Real Talk: Eosinophilic Diseases
Eosinophils are a type of white blood cell that play a role in immune responses and help fight off infections. When these cells build up and cause inflammation in the digestive system, tissues, organs, and/or bloodstream, without a known cause, it may be the result of an eosinophil-associated disease. Join the American Partnership for Eosinophilic Disorders (APFED) for a series of conversations with researchers, clinicians, patients, and other community members as we discuss practical strategies for disease management and treatments, research, and other topics of interest.
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Bone Mineral Density in Pediatric Eosinophilic Esophagitis
06/24/2025
Bone Mineral Density in Pediatric Eosinophilic Esophagitis
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Anna Henderson, MD, a pediatric gastroenterologist at Northern Light Health in Maine, about bone mineral density in EoE patients. They discuss a paper she co-authored on the subject. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:17] Holly introduces today’s topic, eosinophilic esophagitis (EoE), and bone density. [1:22] Holly introduces today’s guest, Dr. Anna Henderson, a pediatric gastroenterologist at Northern Light Health in Maine. [1:29] During her pediatric and pediatric gastroenterology training at Cincinnati Children’s Hospital, she took a special interest in eosinophilic esophagitis. In 2019, Dr. Henderson received APFED’s NASPGHAN Outstanding EGID Abstract Award. [1:45] Holly, a feeding therapist in Maine, has referred many patients to Dr. Henderson and is excited to have her on the show. [2:29] Dr. Henderson is a wife and mother. She loves to swim and loves the outdoors. She practices general pediatric GI in Bangor, Maine, at a community-based academic center. [2:52] Her patient population is the northern two-thirds of Maine. Dr. Henderson feels it is rewarding to bring her expertise from Cincinnati to a community that may not otherwise have access to specialized care. [3:13] Dr. Henderson’s interest in EoE grew as a GI fellow at Cincinnati Children’s. Her research focused on biomarkers for disease response to dietary therapies and EoE’s relationship to bone health. [3:36] As a fellow, Dr. Henderson rotated through different specialized clinics. She saw there were many unanswered questions about the disease process, areas to improve treatment options, and quality of life for the patients suffering from these diseases. [4:00] Dr. Henderson saw many patients going through endoscopies. She saw the social barriers for patients following strict diets. She saw a huge need in EoE and jumped on it. [4:20] Ryan grew up with EoE. He remembers the struggles of constant scopes, different treatment options, and dietary therapy. Many people struggled to find what was best for them before there was a good approved treatment. [4:38] As part of Ryan’s journey, he learned he has osteoporosis. He was diagnosed at age 18 or 19. His DEXA scan had such a low Z-score that they thought the machine was broken. He was retested. [5:12] Dr. Henderson explains that bone mineral density is a key measure of bone health and strength. Denser bones contain more minerals and are stronger. A low bone mineral density means weaker bones. Weaker bones increase the risk of fracture. [5:36] DEXA scan stands for Dual Energy X-ray Absorptiometry scan. It’s a type of X-ray that takes 10 to 30 minutes. A machine scans over their bones. Typically, we’re most interested in the lumbar spine and hip bones. [5:56] The results are standardized to the patient’s height and weight, with 0 being the average. A negative number means weaker bones than average for that patient’s height and weight. Anything positive means stronger bones for that patient’s height and weight. [6:34] A lot of things can affect a patient’s bone mineral density: genetics, dietary history, calcium and Vitamin D intake, and medications, including steroid use. Prednisone is a big risk factor for bone disease. [7:07] Other risk factors are medical and auto-immune conditions, like celiac disease, and age. Any patient will have their highest bone density in their 20s to 30s. Females typically have lower bone mineral density than males. [7:26] The last factor is lifestyle. Patients who are more active and do weight-bearing exercises will have higher bone mineral density than patients who have more of a sedentary lifestyle. [7:56] Ryan was told his bone mineral density issues were probably a side-effect of the long-term steroids he was on for his EoE. Ryan is now on benralizumab for eosinophilic asthma. He is off steroids. [8:36] Dr. Henderson says the research is needed to find causes of bone mineral density loss besides glucocorticoids. [8:45] EoE patients are on swallowed steroids, fluticasone, budesonide, etc. Other patients are on steroids for asthma, eczema, and allergic rhinitis. These may be intranasal steroids or topical steroids. [9:01] Dr. Henderson says we wondered whether or not all of those steroids and those combined risks put the EoE population at risk for low bone mineral density. There’s not a lot published in that area. [9:14] We know that proton pump inhibitors can increase the risk of low bone mineral density. A lot of EoE patients are on proton pump inhibitors. [9:23] That was where Dr. Henderson’s interest started. She didn’t have a great way to screen for bone mineral density issues or even know if it was a problem in her patients more than was expected in a typical patient population. [9:57] Holly wasn’t diagnosed with EoE until she was in her late 20s. She was undiagnosed but was given prednisone for her problems. Now she wonders if she should get a DEXA scan. [10:15] Holly hopes the listeners will learn something and advocate for themselves or for their children. [10:52] If a patient is concerned about their bone mineral density, talking to your PCP is a perfect place to start. They can discuss the risk factors and order a DEXA scan and interpret it, if needed. [11:11] If osteoporosis is diagnosed, you should see an endocrinologist, specifically to discuss therapy, including medications called bisphosphonates. [11:36] From an EoE perspective, patients can talk to their gastroenterologist about what bone mineral density risk factors may be and if multiple risk factors exist. Gastroenterologists are also more than capable of ordering DEXA scans and helping their patients along that journey. [11:53] A DEXA scan is typically the way to measure bone mineral density. It’s low radiation, it’s easy, it’s fast, and relatively inexpensive. [12:10] It’s also useful in following up over time in response to different interventions, whether or not that’s stopping medications or starting medications. [12:30] Dr. Henderson co-authored a paper in the Journal of Pediatric Gastroenterology and Nutrition, called “Prevalence and Predictors of Compromised Bone Mineral Density in Pediatric Eosinophilic Esophagitis.” The study looked at potential variables. [12:59] The researchers were looking at chronic systemic steroid use. They thought it was an issue in their patients, especially patients with multiple atopic diseases like asthma, eczema, and allergic rhinitis. That’s where the study started. [13:22] Over the years, proton pump inhibitors have become more ubiquitous, and more research has come out. The study tried to find out if this was an issue or not. There weren’t any guidelines for following these patients, as it was a retrospective study. [13:42] At the time, Dr. Henderson was at a large institution with a huge EoE population. She saw that she could do a study and gather a lot of information on a large population of patients. Studies like this are the start of figuring out the guidelines for the future. [14:34] Dr. Henderson wanted to determine whether pediatric patients with EoE had a lower-than-expected bone mineral density, compared to their peers. [14:44] Then, if there were deficits, she wanted to determine where they were more pronounced. Were they more pronounced in certain subgroups of patients with EoE? [14:59] Were they patients with an elemental diet? Patients with an elimination diet? Were they patients on steroids or PPIs? Were they patients with multiple atopic diseases? Is low bone mineral density just a manifestation of their disease processes? [15:14] Do patients with active EoE have a greater propensity to have low bone mineral density? The study was diving into see what the potential risk factors are for this patient population. [15:45] The study was a retrospective chart review. They looked at patients aged 3 to 21. You can’t do a DEXA scan on a younger patient, and 21 is when people leave pediatrics. [16:03] These were all patients who had the diagnosis of EoE and were seen at Cincinnati Children’s in the period between 2014 and 2017. That period enabled full ability for chart review. Then they looked at the patients who had DEXA scans. [16:20] They did a manual chart review of all of the patients and tried to tease out what the potential exposures were. They looked at demographics, age, sex, the age of the diagnosis of EoE, medications used, such as PPIs, and all different swallowed steroids. [16:44] They got as complete a dietary history as they could: whether or not patients were on an elemental diet, whether that was a full elemental diet, whether they were on a five-food, six-food, or cow’s milk elimination diet. [16:58] They teased out as much as they could. One of the limitations of a retrospective chart review is that you can’t get some of the details, compared to doing a prospective study. For example, they couldn’t tease out the dosing or length of therapy, as they would have liked. [17:19] They classified those exposures as whether or not the patient was ever exposed to those medications, whether or not they were taking them at the time of the DEXA scan, or if they had been exposed within the year before the DEXA scan. [17:40] They also looked at whether the patients had other comorbid atopic disorders, to see if those played a role, as well. [18:03] The study found that there was a slightly lower-than-expected bone mineral density in the patients. The score was -0.55, lower than average but not diagnostic of a low bone mineral density, which would be -2 or below. [18:27] There were 23 patients with low bone mineral density scores of -2 or below. That was 8.6% of the study patients. Typically, only 2.5% of the population would have that score. It was hard to tease out the specific risk factors in a small population of 23. [18:57] They looked at what the specific risk factors were that were associated with low bone mineral density, or bone mineral density in general. [19:12] After moving from Colorado, Holly has transferred to a new care team, and doctors wanted her baseline Vitamin D and Calcium levels. No one had ever tested that on her before. Dr. Henderson says it’s hard because there’s nothing published on what to do. [19:58] The biggest surprise in the study was that swallowed steroids, or even combined steroid exposure, didn’t have any effect on bone mineral density. That was reassuring, in light of what is known about glucocorticoid use. [20:16] The impact of PPI use was interesting. The study found that any lifetime use of PPIs did seem to decrease bone mineral density. It was difficult to tease out the dosing and the time that a patient was on PPIs. [20:34] Dr. Henderson thinks that any lifetime use of PPIs is more of a representation of their cumulative use of PPIs. At the time of the study, from 2014 to 2017, PPIs were still very much first-line therapy for EoE; 97% of the study patients had taken PPIs at some time. [21:02] There are so many more options now for therapy when a patient has a new diagnosis of EoE, especially with dupilumab now being an option. [21:11] Dr. Henderson speaks of patients who started on PPIs and have stayed on them for years. This study allows her to question whether we need to continue patients on PPIs. When do we discuss weaning patients off PPIs, if appropriate? [22:05] Ryan says these podcasts are a great opportunity for the community at large and also for the hosts. He just wrote himself a note to ask his endocrinologist about coming off PPIs. [22:43] Dr. Henderson says that glucocorticoid use is a known risk factor for low bone mineral density and osteoporosis. In the asthma population, inhaled steroids can slightly decrease someone’s growth potential while the patient is taking them. [23:10] From those two facts, it was thought that swallowed steroids would have a similar effect. But since they’re swallowed and not systemic, maybe things are different. [23:23] It was reassuring to Dr. Henderson that what her study found was that the swallowed steroid didn’t affect bone mineral density. There was one other study that found that swallowed steroids for EoE did not affect someone’s height. [23:51] Dr. Henderson clarifies that glucocorticoids include systemic steroids like prednisone and hydrocortisone. [23:57] Based on Dr. Henderson’s retrospective study, fluticasone as a swallowed steroid did not affect bone mineral density. It was hard to tease out the dosing, but the cumulative use did not seem to result in a deficit for bone mineral density. [24:16] Holly shared that when she tells a family of a child she works with that the child’s gastroenterologist will likely recommend steroids, she will now give them the two papers Dr. Henderson mentioned. There are different types of steroids. The average person doesn’t know the difference. [25:15] Dr. Henderson thinks that for patients who have multiple risk factors for low bone mineral density, it is reasonable to have a conversation about bone health with their gastroenterologist to see whether or not a DEXA scan would be worth it. [25:56] If low bone mineral density is found, that needs to be followed up on. [26:03] There are no great guidelines, but this study is a good start on what these potential risk factors are. We need some more prospective studies to look at these risk factors in more detail than Dr. Henderson’s team teased out in this retrospective study. [26:23] Dr. Henderson tells how important it is for patients to participate in prospective longitudinal studies for developing future guidelines. [26:34] Holly points out that a lot of patients are on restrictive diets. It’s important to think about the whole picture if you are starting a medication or an elimination, or a restricted diet. You have to think about the impact on your body, overall. [27:11] People don’t think of dietary therapy as medication, but it has risks and benefits involved, like a medication. [27:50] Dr. Henderson says, in general, lifestyle management is the best strategy for managing bone health. Stay as active as you can with weight-bearing exercises and eating a well-balanced diet. If you are on a restrictive diet, make sure it’s well-balanced. [28:12] Dr. Henderson says a lot of our patients have feeding disorders, so they see feeding specialists like Holly. A balanced diet is hard when kids are very selective in their eating habits. [29:10] Dr. Henderson says calcium and Vitamin D are the first steps in how we treat patients with low bone mineral density. A patient who is struggling with osteoporosis needs to discuss it with their endocrinologist for medications beyond supplementation. [29:31] Ryan reminds listeners who are patients always to consult with their medical team. Don’t go changing anything up just because of what we’re talking about here. Ask your care team some good questions. [29:47] Dr. Henderson would like families to be aware, first, that some patients with EoE will have bone mineral density loss, especially if they are on PPIs and restrictive diets. They should start having those discussions with their providers. [30:04] Second, Dr. Henderson would like families to be reassured that swallowed steroids and combined steroid exposure didn’t have an impact on bone mineral density. Everyone can take that away from today’s chat. [30:18] Lastly, Dr. Henderson gives another plug for patient participation in prospective studies, if they’re presented with the opportunity. It’s super important to be able to gather more information and make guidelines better for our patients. [30:35] Holly thanks Dr. Henderson for coming on Real Talk — Eosinophilic Diseases and sharing her insights on bone mineral density, and supporting patients in Maine. [30:57] Dr. Henderson will continue to focus on the clinical side. She loves doing outreach clinics in rural Maine. It’s rewarding, getting to meet all of these patients and taking care of patients who would otherwise have to travel hours to see a provider. [32:01] Ryan thinks the listeners got a lot out of this. For our listeners who would like to learn more about eosinophilic disorders, please visit and check out the links in the show notes. [32:11] If you’re looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at . [32:19] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [32:28] Ryan thanks Dr. Henderson for joining us today for this great conversation. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda for supporting this episode. Mentioned in This Episode: , a pediatric gastroenterologist at APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “DEXA scan stands for dual-energy X-ray absorptiometry scan. It’s a type of X-ray where a patient lies down for 10 to 30 minutes. A machine scans over their bones. Typically, we’re most interested in the lumbar spine and hip bones.” — Anna Henderson, MD “We wondered whether or not all of those steroids and those combined risks even put our EoE population at risk for low bone mineral density. There’s not a lot published in that area.” — Anna Henderson, MD “If a patient is worried [about their bone mineral density], their PCP is a perfect place to start for that. They’re more than capable of discussing the risk factors specific for that patient, ordering a DEXA scan, and interpreting it if need be.” — Anna Henderson, MD “I think we need some more prospective studies to look at these risk factors in a little bit more detail than we were able to tease out in our retrospective review.” — Anna Henderson, MD “Just another plug for the participation in prospective studies, if you’re presented with the opportunity. It’s super important to be able to gather more information and to be able to make guidelines better for our patients about these risks.” — Anna Henderson, MD
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Common Nutritional Deficiencies that Affect Those with Non-EoE EGIDs
05/30/2025
Common Nutritional Deficiencies that Affect Those with Non-EoE EGIDs
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Bethany Doerfler, MS, RDN, a clinical research dietician specializing in lifestyle management of digestive diseases at Northwestern Medicine. Ryan and Holly discuss managing nutritional deficiencies in patients with non-EoE EGIDs and a study Bethany worked on. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:17] Holly introduces today’s topic, common nutritional deficiencies that affect those with eosinophilic gastrointestinal diseases that occur in the GI tract lower than the esophagus (non-EoE EGIDs). [1:31] Holly introduces today’s guest, Bethany Doerfler, a clinical research dietician specializing in lifestyle management of digestive diseases, including gastroesophageal reflux disease, motility disorders, and eosinophilic diseases. [1:45] Bethany currently practices as part of a multi-disciplinary team in a digestive health institute at Northwestern Medicine. [2:03] Bethany began working with this disorder almost 20 years ago. She worked with Dr. Gonsalves and Dr. Hirano at Northwestern. Dr. Gonsalves invited her to work with EoE patients. Bethany had not heard of EoE. [2:59] Bethany says the lens that we’ve used to look at food as the trigger and also a therapeutic agent in the esophagus, we’re looking at in non-EoE EGIDs as well; at the same time, trying to make sure that we’re honoring the other parts of our patient’s lives. [3:27] Before Bethany started working in GI at Northwestern, she worked in the Wellness Institute, doing nutrition for patients at Northwestern. Bethany has a research background in epidemiology and she wanted to see better nutrition research in GI. [3:56] Through a friend, Bethany connected with the Chief of GI at that point. Northwestern had never had a dietician working in GI. [4:08] Bethany is pleased to see a trend in healthcare of thinking about the patient as a whole person, including diet, psychological wellness, physical health, exercise, sleep, and more. Bethany wanted to see more research on GI disorders. [4:38] Bethany says that eosinophils in the esophagus indicate that something is irritating the tissues, such as reflux, food triggers, aeroallergens, and other things. [4:58] Eosinophils do belong in the stomach, the small intestine, and the colon. The challenge for researchers has been, how many, where are they supposed to live, and what are they supposed to look like. [5:10] There is eosinophilic gastritis, where eosinophils can infiltrate the stomach, causing a lot of inflammatory responses that make patients sick. We see that in all parts of the small intestine and less commonly, in the colon, as well. [5:32] It’s a good reminder for listeners that eosinophils are white blood cells. When they’re in the tissues, they can swell things up and cause the body to have this inflammatory response in these lower GI tract organs. [5:49] The symptoms patients can experience are vomiting, diarrhea, and abdominal pain, among other things. [6:14] The nomenclature for this subset of eosinophil-associated diseases has changed and Bethany says to hang tight, there is lots of work underway to nail this down further in the next couple of months to a year. [6:29] The last guidelines were published by a Delphi Consensus in 2022. The experts in the field got together and voted on the scientific accuracy of certain statements to develop cut points for how to grade. [6:48] The experts are asking questions like: What counts as eosinophilic gastritis? What do we think are some of the symptoms and the clinical findings so that we all are looking at things through the same lens? [7:02] To get to these consensus statements, there’s a lot of discussion, agreement, and good collegial discussions about making sure that we’re looking at this accurately. [7:12] We’re trying to give the right names to the right disorders and give clear diagnostic criteria, so that we’re helping our patients get a diagnosis, and we’re not labeling something incorrectly and sticking someone with an inaccurate diagnosis. [7:36] The proper terminology is eosinophilic gastritis in the stomach, eosinophilic enteritis in the small intestine, eosinophilic colitis in the colon, and eosinophilic gastroenteritis where the stomach and the small bowel are involved. [7:53] There’s more to come on the clinical criteria of what makes that diagnosis but we’re getting the names and the numbers right. [8:03] Holly agrees that having the symptoms given a named diagnosis is important to patients, knowing that researchers are looking into their illness. [9:00] Bethany notes that the diagnosis also means that there are opportunities for medical therapy, cut points for which medicines or therapies work or not, and billing codes. If we can’t bill insurance companies, patients might not get certain services. [9:28] Ryan tells how beneficial it was for him to have access to multi-disciplinary teams and see specialists he might not have seen without the proper diagnosis and just thought it was a GI issue. He was fortunate to see a dietician and start dietary therapy. [9:53] Bethany says the dietician’s priority is the patient’s health and wellness. [10:13] These disorders carry clinical non-gastrointestinal manifestations: fatigue, concern over what to eat, food access issues, family support, and other food allergies. These are important things for a dietician to consider. [10:37] Are patients growing as they should? Do they feel like they have enough to eat? Do they feel excluded in social settings? There’s a list of important things that we want to be looking at. That’s why it’s important to have a multi-disciplinary approach. [11:07] First, Bethany wants to see that her patients are physically and nutritionally well. That’s a priority if we’re going to try to get rid of some of the food triggers that could be exacerbating the disease. [11:20] Before Bethany takes anything out of someone’s diet, she wants to make sure that they’re getting enough of the good stuff to help them feel good and grow. [11:29] From a diet therapy perspective, Bethany is trying to apply a food removal or substitution protocol to other spots outside the esophagus. They’re seeing that some of the triggers are very similar, both in the stomach and small intestine. [12:09] Dr. Gonsalves, Dr. Hirano, and Bethany did a study, The Elemental Study, where they wanted to uncover if food proteins carried the same trigger risk in the stomach and small intestine as they do in the esophagus. [12:35] They put their patients on a hypoallergenic elemental formula for a period, followed up, and looked at their biopsies of the stomach and small intestine. Fifteen wonderful patients made it through the trial. [12:56] One hundred percent of the patients achieved disease remission and felt better. There were some genetic alterations in the patients. Then they started the process of reintroducing foods over the year. [13:15] That was not part of the original grant but was the team’s clinical interest to see what it is that people are allergic to. Some of the common suspects: wheat, dairy, eggs, soy, and nuts, were found to be very common triggers for EoG and EoN, as well. [13:47] The benefit of working with a dietician as part of your team is, first, we can remediate things the disease has caused nutritionally, and second, we can think about how diet can be a therapeutic tool to use with medications or instead of medication. [14:15] If you want to use nutrition therapeutically, you don’t have to stay there if it’s not the right time to be taking things out of your diet. We have some good, safe, medical therapies. You can find your food triggers but you don’t have to pick that lane forever. [14:42] Holly and Ryan relate their experiences with traveling abroad and going on medical therapies when they can’t stay on their diets. [15:57] Bethany says low levels of vitamins and minerals in the blood can be caused by a disorder or an elimination diet. In the U.S., dairy is the biggest source of protein for young kids. It’s also the biggest source of calcium and vitamin D. [16:22] Dieticians often say, if we are going to use dietary therapy for EoE or non-EoE EGIDs, we have to think of this as a substitution diet. If we remove something, we have to replace it with something equally nutrient-dense. [16:39] Bethany and her group look at serum values of Vitamin D, B12, and iron they assess for patients. For kids, instead of drawing blood, they piece together what they’re taking against what they need and see if there are gaps to fill with food or supplements. [17:32] In patients with non-EoE EGIDs, Bethany says we see the disease intersect with the food supply. When we take milk out, we’re cutting the biggest source of calcium and Vitamin D. We have to replace calcium and Vitamin D. [17:55] In the 1950s, a public health law allowed wheat to be enriched with folic acid and other B vitamins and iron. When we cut out wheat, our patients aren’t getting enough iron or B vitamins. We have to replace those. [18:16] For patients who have eosinophils in their stomach and small intestine, their absorption in the small bowel may be directly impacted. [18:26] People can have low levels of protein in their blood, maybe because they’re eating insufficient protein or maybe because the disease doesn’t allow them to absorb protein sufficiently when there’s swelling in the small intestine. [18:44] There are other nutrients, like zinc, for people who have diarrhea, and magnesium if you can’t eat a lot of whole grains and nuts, There are quite a few nutrients that Bethany is broadly looking at. [18:54] Based on the absorption in the small intestine, patients’ doctors need to look at their B12, folic acid, iron levels, and Vitamin D. [19:12] Holly loves Bethany’s terminology of replacing, not just eliminating, foods. She will use that terminology with her patients to make it feel more supportive for them. [20:40] A lot of people want to get all their nutrients through their food. That’s not always practical. Vitamin D is hard to get exclusively in your diet if you’re not drinking milk or eating wild-caught fish. You have to rely on fortified foods or add supplements. [21:15] One, we want to take a look at your diet and ask how are your calories. We want to make sure you’re eating enough. Two, if we suspect there are some vitamin deficiencies, we check your blood or just empirically supplement you. [21:36] Supplementation should be done carefully. There are some vitamins where you can get too much of a good thing. Vitamins stored in the fat need to be at levels sufficient for repletion, dictated by age and gender. Dieticians know what to recommend. [22:19] For patients who have non-EoE EGIDs, some have tentative swallowing, so Bethany tries to do as many liquid or chewable safe options for supplements as possible. [23:46] Holly works with patients who have feeding difficulty, so she appreciates the liquid and chewable supplements for easier swallowing and quicker absorption. [24:08] Bethany mentions that some fortified oat, corn, and rice breakfast cereals are highly enriched with B vitamins and iron. Look at the labels. It can be a way to layer in more vitamins without purchasing a supplement. [25:24] Holly doesn’t think patients understand how valuable a good dietician can be. She had one patient with celiac who was taking a supplement with gluten in it! She reminds listeners to always consult your care team before making any changes to your treatment plan. [25:59] Bethany’s favorite thing to talk about is foods and where to find what. If listeners have questions, she is happy to post answers on the website. [26:25] The American Academy of Pediatrics says a cup of vitamin-fortified juice a day is not too much sugar and is a good source of Vitamin C and other nutrients. The calcium and Vitamin D you get from a cup of fortified juice is very value-available. [26:46] In the non-dairy drink world, some are nicely fortified and some are not. If you make your almond milk, you’re missing out on the fortifications. [27:11] Bethany likes some of the fortified juices and some of the enriched non-dairy milk options. Those are the best ways to get calcium and Vitamin D for people who need calories. Instead of water with meals, substitute an enriched drink with meals. [27:33] Some people struggle with protein, probably because of their level of food restriction. The typical animal proteins are great. If you can do soy, a cup of soy milk has eight grams of protein. Soy is a complete protein that mimics animal proteins. [28:04] Cook your cereal in soy milk. Use it as the base of a smoothie. This is before getting into protein powders. Try legume-based proteins, if you can handle legumes. Your supplements have to be personalized. That’s the tricky part. [28:30] If you have a lot of food allergies or intolerances, it may be worth talking to your gastroenterologist, allergist, or dietician about adding elemental formula as a supplement. Bethany uses it often with food allergy patients as a safe supplement. [29:31] Bethany primarily treats adults but also young adults transitioning from the pediatric side into the adult world. Sometimes a feeding difficulty follows patients into adult treatment. We need everyone at the table to treat this immune-mediated disease. [30:32] Patient advocacy groups like APFED have ways to help you find dieticians. Also, the Academy of Nutrition and Dietetics has “Find a Specialist” on their website. . Dieticians can do telehealth if you are not near one. [31:45] If the practice that you’re in doesn’t have a dietician, you could gently suggest they have one join the practice, or consult with the practice. Patient advocacy is strong. [33:12] Bethany talks about getting an appointment with a dietician. On the pediatric side, it has to do with the billing code. Ask your insurance if they cover medical nutrition therapy, Billing Code 97802, and for which diseases. Insurance may have stipulations. [34:14] If medical nutrition therapy is not a covered benefit, ask the dietician if they can do a sliding scale. Holly says she has seen plans in several states where the patient can use the HSA or FSA card to pay for medical nutrition therapy. [34:49] Bethany believes in the pediatric world, where growth and development are concerns, there’s a little bit better coverage. [34:59] On the adult side, if Bethany has other diagnoses, like high blood pressure, or diabetes, she is also billing for those because she makes sure what she recommends is also in line with what is good for their heart and wellness in general. [35:55] Bethany was intrigued to learn food proteins do trigger disease activity for our patients in the stomach and small intestine, just as in the esophagus. [36:20] In the Elemental Trial, they were surprised to learn people with non-EoE EGIDs had more allergies than expected. They were more likely to have more than just one or two. They were also more likely to have rare food allergies like legumes or grains. [36:43] A patient may want to learn all their food triggers, but they may be a highly allergic person and it may not be worth trying to remove all their food triggers. [37:06] Bethany wants to remind listeners that the diet approach should be a substitution diet. If you take things out, you’ve got to replace them with other plants. [37:18] There’s great crossover nutrition between fruits and vegetables. Seeds are great as a fill-in for nuts. There are plenty of other whole grains out there besides wheat. There are lots of good ways to get that nutritional balance into your diet. [37:31] For anyone who’s eliminating a food group, even if you’re substituting it, it’s a good idea to talk to your doctor about filling in with a good multivitamin, multimineral supplement. [37:59] Bethany says it’s fun working with colleagues to look for other ways to look at this nutrition lens for patients with Non-EoE EGIDs. [38:14] They are looking at noninvasive ways to find eosinophils to go faster with helping people find their food triggers without having to scope them. [38:28] Bethany is hoping with that research to be able to help people learn how they can cheat, like having pizza once a month if they are allergic to dairy. That’s a question for your care team, but we don’t have a great science-based way to answer that. [38:53] As we study more noninvasive ways to get at eosinophilic activity, we can give patients a little bit more freedom and quality of life. That’s what Bethany is working on next. [39:58] Holly thanks Bethany Doerfler for joining us on Real Talk — Eosinophilic Diseases. For our listeners, to learn more about eosinophilic disorders, please visit and check out the links in the show notes. [40:11] If you’re looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at . [40:21] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [40:34] Holly thanks Bethany for joining us today. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda for supporting this episode. Mentioned in This Episode: , MS, RD, Clinical Research Dietician specializing in lifestyle management of digestive diseases at (In Memoriam) APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “The lens that we’ve used to look at food as the trigger and also a therapeutic agent in the esophagus, we’re doing that in non-EoE EGIDs as well, and at the same time, trying to make sure that we’re honoring the other parts of our patient's lives.” — Bethany Doerfler, RD “We are trying to give the right names to the right disorders and give clear diagnostic criteria so that we’re helping our patients get a diagnosis, and we’re not labeling something incorrectly and sticking someone with a diagnosis that isn’t accurate.” — Bethany Doerfler, RD “The diagnosis also means that there are opportunities for medical therapy, cut points for which we decide if medicines or other therapies work or not, and billing codes. If we can’t bill insurance companies, patients may not be privy to certain services.” — Bethany Doerfler, RD “Look at the [fortified...
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Comparing Pediatric and Adult EoE
04/30/2025
Comparing Pediatric and Adult EoE
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Dr. Melanie Ruffner, an Attending Physician with the Division of Allergy and Immunology and the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia. Dr. Ruffner describes her work in clinic and the paper she co-authored about pediatric and adult eosinophilic esophagitis (EoE). She covers the questions they considered in the paper and the conclusions they reached. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:17] Holly introduces today’s topic, pediatric and adult eosinophilic esophagitis (EoE), and introduces today’s guest, Dr. Melanie Ruffner. [1:23] Dr. Melanie Ruffner is an attending physician with the Division of Allergy and Immunology in the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia. Holly welcomes Dr. Ruffner to Real Talk. [1:50] As an attending physician in the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia, Dr. Ruffner sees patients who have eosinophilic esophagitis and other eosinophilic disorders, including eosinophilic GI tract disorders. [2:09] Dr. Ruffner also leads a research group that studies how the immune system causes inflammation in response to certain foods, leading to EoE. [2:20] Inflammation in the esophagus is tied to other diseases like epithelial barrier dysfunction and fibrosis. [2:28] Our bodies use many different proteins that allow cells to communicate with one another. One type of signaling protein that causes inflammation is called cytokines. [2:41] Dr. Ruffner’s group is interested in how these signaling proteins called cytokines interact with epithelial cells and how that impacts the oral function of the esophagus in patients with EoE. [3:02] In training, Dr. Ruffner became interested in eosinophilic esophagitis and other non-IgE-mediated food allergies because we don’t have a lot of clear treatments or clear mechanisms that cause them. [3:21] Dr. Ruffner felt there was a lot of work to be done in that area. It was rewarding to be in clinical encounters with those patients. Often, patients had spent a long time trying to find out what was happening and to find a treatment plan that worked for them. [4:31] Dr. Ruffner’s group sees some patients who have eosinophilic gastroenteritis and patients who are referred for hypereosinophilia with impacts of inflammation in other organ systems. [5:06] Dr. Ruffner co-authored a paper about pediatric and adult EoE published in the Journal of Allergy and Clinical Immunology. It explored if EoE in pediatric patients and adult patients is a spectrum or distinct diseases. [5:29] EoE is a chronic allergic condition that affects the esophagus. The esophagus carries food from the mouth to the stomach. In people with EoE, the immune system overreacts to foods and causes inflammation in the esophagus. [5:47] Eosinophils are a type of white blood cell. Eosinophils infiltrate the tissue in the esophagus of people with EoE. Doctors look for eosinophils in the tissue of the esophagus as a sign that inflammation in the esophagus is EoE. [6:04] The symptoms of EoE can vary in children and adults. That was one of the things the doctors were interested in when they were thinking about this paper. There are no blood or allergy tests that make it easy to diagnose EoE, which requires an endoscopy. [6:31] An endoscopy is performed by a gastroenterologist. The gastroenterologists look at the appearance of the esophagus and take biopsies. [6:49] A pathologist counts the eosinophils in the tissue to determine if there are eosinophils present. If there are more than 15 eosinophils in the high-powered field of the microscope and symptoms and clinical conditions are present, EoE is diagnosed. [7:25] One of the variables Dr. Ruffner considers is that symptoms can be different in children versus adults. In older adolescents and adults, the classic symptom is difficulty swallowing or dysphagia. That is often caused by fibrosis in the esophagus. [7:54] In younger children this is often not how EoE presents. They may vomit or refuse food. They may experience more weight loss. Symptoms vary over the lifespan. Pediatric EoE symptoms of nausea and abdominal pain can also show up in adults. [9:54] Atopy refers to allergic conditions. In the paper, a history of atopy means a history of allergic conditions, like atopic dermatitis, IgE-mediated food allergy, allergic rhinitis, or asthma. [10:37] These disorders tend to cluster together, over time, because they share many common genetic risks. They cluster in families because some of the genetic risks are the same. Not every family member will have the same atopic or allergic conditions. [11:07] In families, perhaps one person will have atopic dermatitis and allergic rhinitis while another will have atopic dermatitis, allergic rhinitis, asthma, and EoE. They may have inherited different genetics or had different environmental exposures. [11:50] Ryan says that describes his family. They each have different atopic conditions. Ryan got them all! Dr. Ruffner says it describes her family, as well. [12:26] Dr. Ruffner says it’s understandable for families to stress about atopic conditions. Unfortunately, right now, there’s no way to predict who will develop which atopic conditions. It’s on the minds of the medical and research communities. [13:10] IgE is an antibody that binds to food allergens and mediates anaphylaxis, usually within 30 minutes, with hives, vomiting, and difficulty breathing. Not everyone with a diagnosed food allergy will be given an epinephrine auto-injector. [13:44] IgE-mediated food allergies are influenced by type 2 cytokines. Cytokines are immune system signaling proteins that have been labeled as groups. The group that is involved in allergy most heavily is under the label type 2. [14:15] These type 2 cytokines are responsible for influencing B cells to make IgE. In the tissue in EoE, we find that there is a large amount of these type 2 cytokines present. [14:37] This is quite relevant because dupilumab, the monoclonal antibody that has been approved to treat EoE, targets type 2 inflammation by blocking type 2 cytokines. [16:04] Dr. Ruffner says one of the biggest challenges in the field of EoE is we don’t have a way to stratify who should get which treatment for EoE. Patients have to choose between diet and pharmacologic therapy. [16:48] We don’t know enough about the inflammatory profiles to give any patient the specific guided information that one therapy would be better than another. [17:11] Pediatric and adult patients are given the same treatment options. Some dosing, such as proton pump inhibitors and dupilumab, is weight-based so different doses are needed. [17:36] Over time, people’s needs change. From early school age to when people leave home, they may have very different needs. They may do well on diet therapy when their diet is controlled by parents, but, on their own, that may not be the best option for them. [18:20] Therapy may change over time to support each patient’s individual goals. It can be challenging because therapies are imperfect. Each therapy has a percentage probability of success. Not every therapy is guaranteed to work for every individual. [19:01] There is some flexibility and possibility of switching between therapies to support people. Ryan shares one of his experiences in changing treatments. [20:03] Some patients are stable on a therapy for a time but then see symptoms creep back up. Dr. Ruffner strongly suggests they talk to their care team for an endoscopy and biopsy to see if they need to switch therapy and if their diet has changed. [21:31] In young children, Dr. Ruffner sees a much higher incidence of feeding refusal. The child may have a preferred food or a preferred texture like puree, long past when that would be appropriate for the age. [22:41] It can be very difficult to move past this learned behavior even if remission is achieved through therapy. The child may need feeding therapy to help with that. [22:59] Feeding behaviors in older individuals may be much more subtle. Talk about them with your care team. Needing water to eat, cutting food very small, and fearing to eat around people are common eating behaviors to discuss in older patients. [23:53] These eating behaviors affect people’s well-being deeply because they affect how social they feel when they are around people. Ideally, you want to be around people and share in social times. [24:16] Holly has used these eating behaviors herself and notices them in other people. When adults come to her for therapy, she asks how many times they refill their water when they eat, and if food ever gets stuck. They are surprised that those are symptoms. [26:01] Dr. Ruffner says it’s important to recognize the difference in symptoms in diagnosing EoE. The main risk factor of EoE is fibrosis, over time. The thought is that early in EoE there is an inflammatory phenotype, but later, there is a fibrotic phenotype. [26:51] The phenotype refers to the presentation or characteristic of disease. What is the appearance at endoscopy? What do we see in the biopsied tissue? Is there fibrosis or not? [27:15] This is the crux of the paper: Is this on a spectrum, that the inflammation is driving the fibrosis, or are these two different things altogether? There is some evidence to suggest that the inflammation contributes to this fibrosis over time. [27:40] One thing that is missing is following a group of patients from the start and having that evidence. There is mechanistic evidence from studies to show that inflammation can contribute to fibrosis. That was one of the discussions in the paper. [28:29] In endoscopies, something that can be seen with fibrosis or fibrostenotic features is more of an appearance of rings and narrowing of the esophagus. A proportion of patients with strictures or narrowing need to have them dilated. [29:11] For patients who have dilation, it can help with symptoms significantly. When pathologists look at the tissue with fibrosis, they can see changes in the protein structure. There is more collagen and other changes in the tissue, causing fibrosis. [30:03] Some patients use adaptive eating behaviors to adapt to significant changes in their esophagus and go for many years without being diagnosed until they present with an impaction when food becomes stuck in their esophagus. [30:46] This makes EoE a challenging disorder for many because it can be very difficult to diagnose. The journey to a diagnosis is very individual. As a group, adults are much more likely to have fibrosis, leading to dysphagia, strictures, or impaction. [31:25] Statistically, across all patients, you see fibrosis more in adults than in children. [32:42] In the paper, Th1 cells are mentioned. Th1 is an immune system term referring to a cell that produces interferon-gamma. Studies show there may be differences in interferon signaling in different age groups but it needs to be studied further. [33:57] Dr. Ruffner’s team had looked at a small group and saw that interferon signaling seemed to be relatively similar between children and adults. Both CD4 and CD8 T cells (types of immune system cells) are potentially producing interferon in the esophagus. [34:32] More study needs to be done around those immune system cells and their potential significance in EoE, if any. [35:33] The paper suggests that EoE in children and adults is essentially a spectrum of the same disorder rather than distinct diseases. [35:42] Aspects of immunology, responses to different treatments across children and adults, the similar responses to diet and different medications, and over time in the same individuals, indicate these are changes and complications over time. [36:41] Dr. Ruffner suggests that medical researchers need to understand which patients are at the highest risk of complications and work to identify the best treatments to prevent those. [37:14] Dr. Ruffner is thinking about the response to proton pump inhibitor therapy. One of the things she is looking at is whether or not proton pump inhibitors affect how eosinophils migrate into the tissue. [37:33] They are finding that it seems that PPIs can decrease the degree of migration of eosinophils into the tissue. They are very interested in looking at that. Ryan says when Dr. Ruffner gets that paper published, she’ll have to come back on the show! [38:06] Ryan thanks Dr. Ruffner. For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit and check out the links in the show notes. [38:15] If you’re looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at . [38:24] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [38:33] Ryan thanks Dr. Ruffner for participating in the podcast episode. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda for supporting this episode. Mentioned in This Episode: , Attending Physician with the Division of Allergy and Immunology and the Center for Pediatric Eosinophilic Disorders at APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , , and . Tweetables: “EoE is a chronic allergic condition that affects the esophagus. The esophagus carries food from the mouth to the stomach. In people with EoE, the immune system overreacts to food allergens and causes inflammation in the esophagus.” — Dr. Melanie Ruffner “In EoE, there are no blood or allergy tests that make it easy to diagnose EoE without an endoscopy.” — Dr. Melanie Ruffner “Is EoE on a spectrum, that the inflammation is driving the fibrosis, or are these two different things altogether? There is some evidence to suggest that the inflammation contributes to fibrosis over time.” — Dr. Melanie Ruffner “When pathologists look at the tissue with fibrosis, they can see the changes in the protein structure.” — Dr. Melanie Ruffner “There are some folks who have adapted their eating behavior quite significantly and may have quite a number of chronic changes in their esophagus that they have adapted around, and they go for many years without being diagnosed.” — Dr. Melanie Ruffner
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Full Circle: An Immunologist’s Unexpected EoE Journey
03/25/2025
Full Circle: An Immunologist’s Unexpected EoE Journey
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Dr. John Accarino, an allergist and immunologist at Massachusetts General Hospital and Mass General for Children, on the topic of immunology support for eosinophilic esophagitis (EoE). Dr. Accarino shares his experiences as a person living with food allergies, allergic asthma, peanut allergy, and eosinophilic esophagitis. He tells how his experiences help him in his work with patients. Dr. Accarino shares some education on a variety of allergy mechanisms and the treatments that mitigate them. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron. Ryan introduces co-host Holly Knotowicz. [1:14] Holly introduces today’s topic, immunology support for eosinophilic esophagitis (EoE), and introduces today’s guest, Dr. John Accarino, an allergist and immunologist at Massachusetts General Hospital. Holly welcomes Dr. Accarino to Real Talk. [1:49] Holly notes that Dr. Accarino is her allergist and immunologist. [2:03] Dr. Accarino works at Massachusetts General Hospital and Mass General for Children. Allergy and Immunology is a field where he can see pediatrics and adults. Originally trained in pediatrics, now Dr. Accarino sees patients of all ages. [2:23] Dr. Accarino grew up with allergies. He has experienced food allergies since he was young, along with allergic asthma, and some eczema, which he grew out of. Later in life, he was diagnosed with eosinophilic esophagitis. He talks with his patients about his experiences. [2:47] Dr. Accarino also does research on drug allergies in the context of certain drug interactions that involve eosinophils. [3:06] When Holly was referred to Dr. Accarino, it was for multiple sclerosis (MS). He told her, “It looks like you have EoE. I have EoE.” It was a huge relief to Holly not to have to explain EoE to her doctor. [3:41] Some patients start to explain their EoE to Dr. Accarino, and he assures them he understands where they’re coming from. Sometimes, he has to be careful not to think everyone has his symptoms, as there is a large spectrum of presentations. [4:26] Dr. Accarino wasn’t diagnosed with EoE until he was in his allergy fellowship, after he suspected it when he had a food impaction at a steakhouse at a graduation party from his pediatric residency. He tried to manage the EoE with lifestyle changes. [5:39] Dr. Accarino didn’t often go to see a doctor during residency, but he realized it was probably a good time to get an endoscopy. [5:52] Holly shares how she was also diagnosed as a clinical fellow. She was subbing for someone on the GEDP team at Children’s Hospital in Colorado. Listening to all the patients, she realized, “This sounds a little bit like me … What is going on?” [6:23] Even with his medical background, it took Dr. Accarino some time to decide to get the endoscopy and biopsies. You or your doctor have to have a high level of suspicion to realize this isn’t just reflux. Food doesn’t get stuck in every person’s throat. [7:01] Thinking back, Dr. Accarino remembers an instance as a child when a dry muffin got stuck in his throat. He stayed calm and waited for it to pass. He thought it was normal. [7:39] He drank a lot of water and chewed his food a lot. Those are markers of potential esophageal inflammation. [8:20] Different groups have different management strategies for EoE. Dietary management, topical steroids, biologics. A subgroup of people with EoE are responsive to proton pump inhibitors (PPIs). Finding the best management strategy is a work in progress. [8:53] With pediatric patients, the parents control the diet, and the children eat what is prepared. He notes that with adult patients, sometimes they let foods slip through. [9:10] If you want to do a single-food elimination diet with dairy, there’s a lot of dairy in the American diet. Dr. Accarino tried eliminating dairy and wheat, but he still had persistent eosinophils with dietary elimination. [9:24] Dr. Accarino then tried PPIs. To know if you have PPI-responsive EoE, you might do twice-daily omeprazole at a significant dose. Have the endoscopy after a few weeks pass and see if the eosinophils are still present in the biopsy. [9:59] Dr. Accarino did that recently and still has the eosinophils. He plans to talk to his gastroenterologist about considering dupilumab, but he feels that he can mitigate his subjective day-to-day experience of symptoms with dietary elimination and PPIs. [10:24] If you still have the presence of eosinophils on biopsy, there’s still inflammation happening. In the long term, you still have to worry about fibrosis and narrowing. [10:34] The last treatment Dr. Accarino tried was as a research participant in a study for dissolvable fluticasone. He received either the medication or a placebo; he doesn’t know which. [11:01] To stay in the study, he had to journal and report his symptoms regularly. He didn’t have enough symptoms to stay in the study. They were looking for a baseline to see how it changed with either the placebo or the medication. [11:20] In research, you have to have a baseline to start, and then you want to see improvement, plus or minus. With EoE, it’s difficult. You have the biopsy and eosinophils, but there’s a large spectrum of symptoms that people may experience. [12:40] Holly appreciates Dr. Accarino’s unique perspective as a doctor with EoE who has experienced various treatments and diets. He understands the concerns of his patients. [12:43] Dr. Accarino says even taking a twice-daily PPI or other medication is difficult for a lot of people, and that’s the most simple of these therapies. [13:06] Dr. Accarino wants to validate everyone’s experience in terms of how difficult it is to treat this disorder, how it may present in different ways, and how there may be a delay in diagnosis. [13:16] This isn’t IgE-mediated immediate food allergy, where you eat a food and may have swelling within minutes; you may have flushing or hives. That’s very clear. With EoE, it’s a different mechanism; in many cases, there is a delay. [14:37] Allergy, in general, is under the purview of clinical immunology. Dr. Accarino is allergic to peanuts and has an IgE-mediated immediate reaction to them. If he eats a peanut, he has symptoms within minutes. He could have anaphylaxis. As a result, he carries an epinephrine auto-injector. [15:01] If Dr. Accarino has a skin test, it will be positive for peanut. He has IgE antibodies to peanuts. He also has oral allergy syndrome where the body mistakes certain fruits, vegetables, or nuts with certain tree pollens or grass pollens. [15:23] Oral allergy syndrome is usually a lower-risk condition where it’s a less-stable protein that once cooked might not produce any symptoms. If it’s raw when you consume it, you may have oral itching, a bit of throat discomfort, or tongue itching. [15:54] Your stomach acid breaks it down so it doesn’t get into your bloodstream and you shouldn’t have a systemic reaction. [16:01] If Dr. Accarino eats a peanut, his stomach acid doesn’t break down the high-risk, stable peanut protein, it gets into his bloodstream, and he can have a systemic anaphylactic reaction. [16:20] Chronic EoE symptoms can present with something like a food impaction, or bad reflux or belly pain, and nausea. The reaction may not be immediate. It may be progressive over days or weeks. [16:38] FIRE is an interesting condition that takes some time to narrow down. It’s an immediate response of the esophagus, but we don’t think it’s histamine-mediated. [16:56] We don’t know, exactly, the mechanism but it’s in people with eosinophilic esophagitis. They feel differently, and there would be different specific food triggers. [17:11] It took some time to figure out what was going on. Dr. Accarino felt like he had a lump in his throat, then a lump in his chest, nausea, and belly pain. It felt like a slow progression of EoE symptoms, and it was from specific food triggers, in his case. [17:30] In some of the FIRE literature, they looked at banana and avocado. For Dr. Accarino, it took a couple of exposures to protein bars and milk protein whey isolate, specific to protein bars he had multiple times, until he figured out that was the trigger. [17:50] Another protein whey isolate that Dr. Accarino scooped as a powder and made into a shake also led to FIRE. [17:55] It took that event for Dr. Accarino to figure out it wasn’t just a flareup of EoE or reflux but some trigger that caused this response that wasn’t anaphylaxis but may be due to the recruitment of eosinophils or some immediate process not well understood. [18:18] FIRE is going to be very hard to research. How would we figure this out? Would we bring someone in and do an endoscopy immediately and see what happens? There’s a lot of descriptive data and case series. [18:32] Dr. Accarino has had experiences when he knew it wasn’t an immediate anaphylactic reaction, oral allergy, or reflux. He asked what else it could be in the context of EoE. When he looked at different case series, that’s the presentation he had. [19:17] Dr. Accarino acknowledges that having personal experience with FIRE, oral allergies, and IgE-mediated allergies, on top of EoE, has influenced his work as a medical professional. He can share anecdotes with patients as he explains the available testing. [19:39] Dr. Accarino says a lot of immunology and allergy is explaining the diagnostic tools and management strategies we have and what we think is going on. [19:50] The immune system is infinitely complex, and a lot of the practice is making a digestible analogy, not just in the context of allergic conditions but also everything with the immune system. There are so many cells doing so many different things. [20:04] Dr. Accarino explains false positives in testing. He has positive scratch tests for peanuts, cashews, and almonds, which shows he has IgE for each of them. He is allergic to peanuts, but he can eat cashews and almonds. Those are false positives. [20:56] When a scratch test is negative for immediate food allergy, it’s a powerful predictive tool. But you may get false positives. How positive is it? There might be room for more discussion. [21:10] There may be more hesitation for people who do large panels of food testing without any history of reacting to any foods. [21:31] Some people have EoE triggered by milk or wheat but have negative skin tests. That doesn’t mean they aren’t triggered by these foods. The skin test is an IgE histamine mast cell mechanism, not for eosinophils, which are other immune cells. [21:58] We go down these steps of thinking about diagnostic triggers and eventually treatment for those immediate symptoms mentioned for EoE. [22:09] Dr. Accarino doesn’t expect FIRE to be responsive to epinephrine. He doesn’t have to stabilize the mast cells. It’s a chronic disease that’s flaring up. You treat it with a chronic type of treatment. [24:10] Dr. Accarino says that for a doctor, immunology is rewarding, interesting, and complex, but it’s intimidating until you get your foothold and see patients and clinical experiences. [25:14] A lot of medical students and residents are a little fearful of immunology. They might not think about it too much. Dr. Accarino loves to talk about it and think about it. He can’t think of anything more complex in terms of systems within our body. [25:37] Ryan comments on his experiences with IgE-mediated food allergies, some environmental allergies that he has no idea how they work, and EoE, which he believes he has a good grasp on. [25:55] Ryan imagines that having a physician with a good understanding of the immune system and also personal experience would be helpful for a patient with multiple allergic conditions. [26:13] Dr. Accarino sees a large overlap of seasonal or year-round environmental allergies and EoE. There are some studies that show that endoscopies on patients with EoE may change at different times of the year if they have underlying seasonal allergies. [26:33] Some people who have food allergies also have EoE or other eosinophilic disorders. Some discussions with them may be about blood tests that detect eosinophils in the bloodstream versus biopsies of the esophagus, stomach, or colon. [27:15] It’s thinking about what tests are available, what they tell us, and how to use them to predict the next steps, things like dietary changes or for immediate food allergy, considering challenges versus full avoidance. Each test has its pluses and minuses. [27:35] People like a clear test, and they like an easy fix, but sometimes there’s a lot of nuanced conversation of shared decision-making and trying things in a supervised setting. [27:57] Holly speaks as a patient of the investigative testing Dr. Acarino is doing with her immune system trying to figure it out along with her MS and EoE. [28:14] Dr. Accarino says the words immune system, immunity, and inflammation are used a lot in talking about foods. Dr. Accarino uses the framework of the immune system trying to help you. [28:42] Sometimes, instead of making helpful antibodies to things like vaccines or viruses, that give you protection, the immune system makes antibodies that attack a certain organ or your joints. [29:02] Dr. Accarino thinks of treatments that suppress the immune system in certain ways. Some treatments cool down the populations of many different immune cells. Oral steroids and prednisone are used for many conditions for autoimmune flares. [29:29] Oral steroids, in the long term, may lead to weight gain, bone density changes, and diabetes. The big push for many diseases is toward non-steroidal biologics to target specific cells that cause disease. [29:59] For Crohn’s disease, a specific monoclonal antibody is used to target TNF-alpha molecules and blocks that inflammation pathway. [30:14] For EoE, dupilumab, a specifically designed antibody, blocks a specific receptor in a specific pathway so the immune system doesn’t have to be shut down and the patient doesn't have the side effects of steroids. It’s a targeted therapy. [30:32] What you see in commercials for injectable medications are large, designed antibodies that, if you took them in a pill form, your stomach acid would break down and digest. So they are injections and infusions that go directly into the bloodstream. [31:22] Medications that end in -mab are monoclonal antibodies. They are very large molecules that would not be stable in stomach acid. [32:09] Dr. Accarino talks of eosinophil normal function and aberrant function. IgE-mediated reactions are usually related to mast cells, a type of immune cell that shouldn’t be in the bloodstream. [32:54] Dr. Accarino can do a CBC with differential to see the number of white blood cells and the number of red blood cells. The differential of white blood cells will include neutrophils, lymphocytes, and eosinophils. It shouldn’t show mast cells. [33:19] If you have mast cells in your bloodstream, that’s mastocytosis, a different problem. Mast cells live in your skin, in your gut, and around your blood vessels. They’re full of granules like histamine and tryptase. [33:38] Dr. Accarino explains how mast cells release their contents and how he would treat the resulting swelling or itch with an antihistamine or epinephrine. Epinephrine treats systemic reactions and stabilizes the mast cells. [34:16] Mast cells have many receptors and may be triggered by many things other than IgE. This is a conversation Dr. Accarino has with patients who have chronic hives unrelated to any foods. [34:29] Some people get hives from non-steroidal anti-inflammatory drugs NSAIDs. Some get hives from vancomycin. Some get hives when the temperature changes, from tight clothing, or from IV contrast. It’s not an IgE-mediated mechanism, but it’s still mast cells being degranulated. [35:45] Dr. Accarino says people see hives and they think allergy. But, like EoE, it doesn’t involve histamine. There can be hives that aren’t related to allergies. This can be idiopathic urticaria or spontaneous urticaria. [36:04] Sometimes, when switching from a day shift to a night shift, hormonal changes will trigger hives. Sometimes, the stress of having a family member in the hospital will cause hives. An accumulation of triggers can lead to mast cell degranulation. [36:38] There are many ways that allergy can have different mechanisms and treatments, with different cells involved. There are different molecules that cause symptoms and manifestations. [36:50] Navigating that and understanding what might be going on can give people a sense of reassurance. The biggest fear is a life-threatening allergic reaction. People will read about fatal anaphylaxis and wonder if it will happen to them with their condition. [37:16] Sometimes, thinking of the cells involved and the pathways may give a level of reassurance that this may not be the same thing that they read about. [37:28] Ryan thanks Dr. Accarino for joining us today. [37:37] Dr. Accarino says it was nice to reflect on things and to go through different scenarios and experiences he has gone through. It was nice to have the opportunity to share them with Ryan, Holly, and all the listeners. [37:57] For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit and check out the links in the show notes. [38:06] If you’re looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at . [38:15] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [38:25] Ryan thanks Dr. Accarino for joining us today for this fun conversation. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode. Mentioned in This Episode: Allergist and Immunologist at and APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “Allergy and immunology is a field where I can see pediatrics and adults. I was originally trained in pediatrics, but now I see all ages, from infants up until older adults.” — Dr. John Accarino “Part of the conversation sometimes is trying not to overly bias myself, where I say, ‘Oh, this is my experience.’ … Like many diseases, there’s a large spectrum of presentations, … different symptoms...
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The Intersection of Food Allergy and Eosinophilic Esophagitis
02/27/2025
The Intersection of Food Allergy and Eosinophilic Esophagitis
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Dr. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital. Dr. Shreffler is also an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative. His research is focused on understanding how adaptive immunity to dietary antigens is both naturally regulated and modulated by therapy in the context of food allergy. This interview covers the results of a research paper on The Intersection of Food Allergy and Eosinophilic Esophagitis, co-authored by Dr. Shreffler. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron. Ryan introduces co-host, Holly Knotowicz. [1:15] Holly introduces today’s topic, the intersection of food allergy and eosinophilic esophagitis. [1:26] Holly introduces today’s guest, Dr. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital and an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative. [1:43] Dr. Shreffler’s research is focused on understanding how adaptive immunity to dietary antigens is both naturally regulated and modulated by therapy in the context of food allergy. [1:54] Holly welcomes Dr. Shreffler to Real Talk. When Holly moved to Maine, she sent her patients to Dr. Shreffler at Mass General. [2:25] Dr. Shreffler trained in New York on a Ph.D. track. He was interested in parasitic diseases and the Th2 immune response. Jane Curtis, a program director at Albert Einstein College of Medicine, encouraged him to consider MD/PhD programs. He did. [3:31] Jane Curtis connected him to Hugh Sampson, who was working with others to help understand the clinical prevalence of food allergy and allergens. [3:51] As a pediatric resident, Dr. Shreffler had seen the burden of allergic disease, caring for kids in the Bronx with asthma. His interest in Th2 immunity, the clear and compelling unmet clinical need, and the problem of food allergy guided his career. [4:31] Dr. Shreffler’s wife has food allergies and they were concerned for their children. Fortunately, neither of them developed food allergies. [5:21] Dr. Shreffler thinks the food allergy field has a lot of people who gravitate toward it for personal reasons. [5:53] Food allergy is an adverse response to food that is immune-mediated. There is still uncertainty about this but Dr. Shreffler believes that a large percentage of patients with EoE have some triggers that are food antigens. [6:27] The broad definition of food allergy would include things like food protein-induced enterocolitis syndrome (FPIES). [6:47] The way we use the term food allergy in the clinic, there are two forms: IgE-mediated allergies and non-IgE-mediated allergies, including EoE. [7:40] Some patients have food-triggered eczema, some have FPIES. [8:04] In 2024, Dr. Shreffler and Dr. Caitlin Burk released a paper that looked at the triggers of EoE, particularly the intersection of IgE-mediated food allergy and EoE. [8:41] Dr. Caitlin Burk joined the group as they were publishing papers on IG food allergy and EoE. It was a moment where things unexpectedly came together. [9:17] Adaptive immunity to food proteins comes from antibodies that cause milk allergy, egg allergy, peanut allergy, or multiple allergies. The IgE has specificity. [9:40] T cells also are specific to proteins. They express a host of receptors that recognize almost anything the immune system might encounter. They have a long memory like B-cells. [10:09] The overlap in these two threads of research was regarding a population of T cells that are important for mediating chronic inflammation at epithelial sites, including the gut. [10:36] These T cells have been described in the airways in asthma, in the skin in eczema, and the GI tract. Researchers years ago had also described them as being associated with IgE food allergy. People with IgE food allergies avoid allergens. [11:13] T cells, being associated with chronic allergic inflammation, now being associated with food allergies which are not having chronic exposures to the allergen, was interesting and surprising. [11:30] Dr. Shreffler and his group found the T cell subset in patients who don’t do well with Oral Immunotherapy (OIT) and patients who have EoE with immediate symptoms. [12:01] Dr. Shreffler notes differences. There are immediate symptoms of IgE food allergy. There is a subset of patients with EoE who have immediate symptoms that are not fully understood. Maybe IgE plays a role there. [12:28] There are different mechanisms for how symptoms are caused and so different ways of making a diagnosis. A food allergy with an IgE antibody can be measured through skin tests and blood tests. This can help identify which foods are the trigger. [12:57] This common T cell subset that we see in EoE and food allergy, helps to explain why IgE alone is not always a very specific marker for identifying people who will have immediate reactions when they’re exposed to the food. [13:17] For patients who react at low levels, it’s not just that they have more or better IgE but they also have an expansion of these T cells that are common between EoE and other chronic forms of allergy and IgE food allergy. [13:41] There’s a lot to learn that might be relevant for patients about this T cell subset. [14:23] These T cells are a specific subset of the group of Th2 T cells, which are a subset of all CD4 T cells. Some CD4 T cells are important for responding to viruses and tumors. Others are important for responding to outside allergens. [15:01] In an allergy or a parasite infection, Th2 T cells are important. There is a subset of T cells that is driven by repetitive and chronic exposure to the triggering protein, antigen, or allergen. [15:47] Most antigens are proteins that trigger an immune response. An antigen that elicits an allergic response is an allergen. [16:30] A food trigger is a protein antigen that is an allergen. In IgE, food allergies, milk, and eggs are prevalent triggers early in life. For reasons not well understood, a lot of people outgrow them. In older patients, peanut and tree nut allergies are prevalent. [17:01] In EoE, milk is one of the most common dietary triggers into adulthood. Some patients with IgE allergy to milk can tolerate it if it’s well cooked. Patients with EoE are less likely to be able to get away with regular and ongoing exposure to milk protein. [17:54] Milk, eggs, and nuts are common triggers in both conditions. There can also be rare food allergy triggers. That’s part of the early evidence that the adaptive immune response was likely to be involved. It can be so specific for some people to rare things. [18:20] Hallmarks of something being immune-mediated are that it is reproducibly demonstrable as a trigger. It’s going to be long-lived. It’s going to be generally relatively small amounts. The immune system is good at detecting small exposures. [19:07] EoE is tricky because there’s not that clear and easy temporal association between an offending allergen exposure for most people and their symptoms. People don’t associate the symptoms with the triggers. [20:14] A history of having blood in the stools can be milk-allergen-driven and was associated with a diagnosis of EoE in those kids when they’re older. [20:26] There are a lot of commonalities in the allergens but it’s not always obvious clinically. [22:40] A challenge in diagnosing EoE is that providers have to be on guard against their biases. They have to give a patient good advice. In EoE there is no test to identify triggers, except rigorous introduction, elimination, reintroduction, and endoscopies. [24:18] For some of Dr, Shreffler’s patients, it becomes less important to know their dietary triggers. They gravitate toward an approved form of treatment that may, if successful, allow them to have a more normal diet because of effective medication. [24:50] Dr. Shreffler thinks there are other triggers, including pollens. There is evidence of seasonality of active EoE in patients shown to have allergic sensitization to pollens. That’s indirect evidence. If the body is making IgE, it’s likely making other responses. [25:32] There are questions about how large the population of patients is who have EoE that may be more intrinsically than extrinsically driven because of genetic variations. [25:54] Dr. Shreffler believes that EoE in some patients is allergen-driven and in some patients EoE is food-driven. Food is a trigger for the majority of pediatric patients and a large percentage of adult patients but not necessarily the exclusive trigger. [27:04] If a patient is motivated to learn what dietary triggers may be at play, Dr. Shreffler often makes assessments outside of pollen season for allergens to which the patient has demonstrated positivity. [28:09] Looking at the epidemiology, both EoE and food allergy are atopic disorders. You see an increased prevalence of asthma, hay fever, eczema, and even allergic proctocolitis in infancy. You see an enrichment of one disorder to another. [28:29] The overlap of food allergy to EoE is stronger than you might expect. About 30 to 40% of patients with EoE will also have IgE food allergy. A higher rate will have IgE positivity, whether or not that food is a trigger of immediate symptoms. [28:48] Patients with food allergies are about four times more likely to have EoE than the general population. That’s a stronger association than the risk of eczema or other atopic conditions to EoE. [30:09] There are differences between IgE food allergy and EoE. The presence of IgE gives a useful tool for identifying the food trigger in food allergy, but not in EoE. Identifying rare triggers in EoE patients is done by clinical observation. [31:46] Epinephrine and antihistamines are not useful in treating EoE. Blocking IgE with Omalizumab has not been effective in trials in treating EoE. PPIs, topical steroids, and dupilumab are helpful for many EoE patients. [32:38] Dupilumab has been evaluated a bit in food allergy in combination with OIT, and there was no statistically significant benefit from dupilumab in food allergy. [33:25] A group in Pennsylvania has been evaluating epicutaneous immunotherapy as a modality to treat EoE. It’s also being evaluated for IgE food allergy. Dr. Shreffler thinks it’s something to keep an eye on. [33:40] The oral route for immunotherapy can drive EoE for patients. As they become less sensitive from an immediate reactivity viewpoint, a significant percentage of patients develop GI symptoms. This has also been observed with sublingual therapy. [34:14] Iatrogenic EoE, caused by the treatment, may resolve on the cessation of the immunotherapy treatment. [36:25] Dr. Shreffler says in some cases, the shared decision is a decision where he has a strong evidence-based opinion. In some cases, there’s a lot more room for a range of clinical decisions that could be equally supported by what we know right now. [36:57] We’ve said that EoE is a contraindication for OIT. There is a shift happening. Dr. Shreffler sits with families and has a conversation about restricting diet or trying chronic therapy and keeping an ad-lib diet. [37:38] What about doing the same thing by treating the immediate-type food allergy with chronic allergen exposure and then ameliorating the effects of EoE if it emerges, with another therapy? A hundred providers would have a diversity of responses. [38:19] When there is a history of EoE in a family, Dr. Shreffler advocates for getting a baseline scope. It becomes an important “ground zero.” [38:28] The goal is to have less invasive ways to monitor these conditions. [39:32] Chronic inflammation, which is the hallmark of EoE, is well-targeted by therapies like PPIs and steroids. Steroids don’t help with IgE-related food allergies. They’re not effective at blocking the IgE-driven immediate response. [41:13] Until recently, IgE food allergy has only been managed with avoidance. We have some other tools now. Xolair is not effective in EoE but is effective in two-thirds to three-quarters of patients with immediate-type food allergies for preventing anaphylaxis. [41:45] Dr. Shreffler refers to an upcoming study on the effectiveness of Xolair in treating people with food allergies. Those who were able to tolerate a minimum amount were allowed to begin consuming allergen. We’ll get insight into how those patients did. [43:08] Food-induced immediate response of the esophagus (FIRE) is immediate discomfort with exposure to some allergens. Dr. Shreffler explains it. Data supports that these patients are experiencing an IgE-mediated but local response to those triggers. [44:59] If FIRE is IgE-mediated, it may be that Xolair would help suppress it in these patients. It’s worth looking at Xolair for this subset of EoE patients. [45:20] Ryan invites any listeners who want to learn more about FIRE to check out episode #34 with Dr. Nirmala Gonsalvez. [45:37] In the paper, Dr. Shreffler wrote about what he hopes will be the practical usefulness of the finding, the intersection between IgE food allergy and EoE. [45:56] A subset of Th2 T cells express a protein called GPR15. It appears to be a marker for the subset of cells that are playing a role in the EoE. [46:36] Caitlin Burk’s work now is looking at their activation status in active disease and post-diet elimination and remission. She is developing a data set that is leading us toward the possibility of focusing on that cell subset and techniques to adopt in clinics. [47:12] She is also working out more advanced techniques to look at the receptors. Dr. David Hill at CHOP is working on similar research. This research has the potential to lead to the development of better tests for EoE. [47:44] Holly tells Dr. Shreffler this has been such an informative episode with so many tidbits of things to help patients advocate for themselves. Holly thanks him for sharing all of that. [48:12] Dr. Shreffler is trying to see what can be utilized from their research to make non-invasive tests to identify food allergen triggers for patients so they don’t have to go through so many endoscopies. He sees it as a huge unmet need. [48:31] Ryan thanks Dr. Shreffler for joining us. For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit and check out the links in the show notes. [48:41] If you’re looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at . [48:50] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [49:00] Ryan thanks Dr. Shreffler for joining us today for this interesting conversation. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode. Mentioned in This Episode: , Chief of Pediatric Allergy and Immunology and Co-Director of APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “This fascinating problem of food allergy: why does the immune system do that for some people — recognize what should be nutritive and innocuous sources of energy as an immunological trigger? ” — Dr. Wayne Shreffler “A food allergy; because there is this IgE antibody, we can do skin tests. We can measure that in the blood. It’s a useful marker for helping to identify which foods are the trigger.” — Dr. Wayne Shreffler “EoE is tricky because there’s not that clear and easy temporal association between an offending allergen exposure for most people and their symptoms. People don’t associate the symptoms with the triggers.” — Dr. Wayne Shreffler “Everything is shared decision-making. In some cases, it’s a shared decision where I have a strong evidence-based opinion. In some cases, there’s a lot more room for a range of clinical decisions that could be equally justified.” — Dr. Wayne Shreffler “Steroids don’t help with IgE-related food allergy. They’re not effective at blocking that IgE-driven immediate response.” — Dr. Wayne Shreffler “I’m trying to see what we can utilize from our research to make non-invasive tests to identify food allergen triggers for patients so they don’t have to go through so many endoscopies. I think that’s a huge unmet need.” — Dr. Wayne Shreffler
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Guidelines for Childhood non-EoE EGIDs
01/22/2025
Guidelines for Childhood non-EoE EGIDs
Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Dr. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children’s Hospital Medical Center. Dr. Collins was a member of the task force that produced the Guidelines on Childhood EGIDs Beyond EoE. In this interview, Dr. Collins discusses the guidelines and how they were created and shares some of the results, including an algorithm for diagnosing non-EoE EGIDs. She shares why she specialized in EGIDs and what her hopes are for the future development of the guidelines. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz. [1:13] Holly introduces today’s topic, guidelines for childhood eosinophilic gastrointestinal disorders (EGIDs) beyond eosinophilic esophagitis (EoE). [1:27] Holly introduces today’s guest, Dr. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children’s Hospital Medical Center. [1:38] Dr. Collins specializes in the pathology of pediatric gastrointestinal disease, especially EGIDs, and is a central pathology reviewer for the Consortium of Eosinophilic Gastrointestinal Researchers (CEGIR), as well as a member of APFED’s Health Sciences Advisory Council. [2:11] As a pathologist, Dr. Collins examines biopsies microscopically. For EGIDs, she determines the peak count of eosinophils per high-power field, or reports the numbers of eosinophils in multiple high-power fields, and analyzes the tissue for additional abnormalities. [2:33] Dr. Collins then issues a report that becomes part of the patient’s medical record and is provided to the patient’s doctor. [2:41] The biopsies Dr. Collins examines may be the first biopsies for a diagnosis, or follow-up biopsies to determine response to therapy, or as part of ongoing monitoring to determine if inflammation has returned even if the patient has no symptoms. [3:07] Dr. Collins was inspired to specialize in EGIDs after speaking with patients with EGIDs. She used to give tours of the pathology lab at Cincinnati Children’s Hospital. She met affected children and their caregivers. Their courage and gratitude moved her. [3:43] Ryan mentions the wonderful patients and their families in the APFED community. Holly says that as a patient, it’s fascinating to meet a pathologist. Pathologists are generally behind the scenes. [4:42] Dr. Collins specializes in GI pathology, including eosinophilic-related conditions in the GI tract. EoE, eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis. [5:16] In January 2024, “Guidelines on Childhood EGIDs Beyond EoE” were published in the Journal of Pediatric Gastroenterology and Nutrition. Dr. Collins served on the task force that prepared the guidelines. [5:35] Non-EoE EGIDs affect all sites of the GI tract except the esophagus. All sites of the GI tract except the esophagus normally have eosinophils in the mucosa, which complicates the diagnosis. [6:03] Like EoE, the diagnosis of non-EoE EGIDs is made after known causes of tissue eosinophilia are excluded. [6:28] Consensus guidelines help bring attention to best practices and encourage uniformity of practices. [6:50] This is especially important for rare diseases and for centers that see fewer patients with rare diseases than the more specialized centers. Guidelines based on the best information available help these centers. [8:03] The best distribution of guidelines is to publish them in the medical literature and sometimes in multiple journals to target audiences of allergists, gastroenterologists, and pathologists. Guidelines may be presented at national meetings to increase awareness. [8:36] Several specialties are involved in the care of patients who have EGIDs. If patients or caregivers learn of published guidelines, they can also inform their providers. [9:23] Insurance is a big issue for so many patients. Getting coverage for both diagnostic and treatment options can be complex. [9:50] The guidelines may be helpful to insurance companies to accept that a certain drug is needed by a patient with a certain condition. However, if the sequence suggested in the guidelines is not followed, there may be difficulty getting coverage in the U.S. [11:11] Patients can advocate for themselves with insurance companies by explaining that the order of testing is not important but getting the recommended tests done is important. [11:55] The greatest challenge the task force faced was the lack of large clinical studies and quality research reports. We’re making progress in this field but we’re at the beginning. Dr. Collins is hopeful that progress will be made in the next two to three years. [12:24] When there were knowledge gaps, the task force filled them in with their published research and their own experiences. It’s always reassuring to have a well-conducted clinical study that verifies that your thinking is correct. [13:29] How long did it take the task force to create these guidelines? Longer than they wanted it to take! The years they put into composing these guidelines were greater due to the interruption caused by the [COVID] pandemic. They all felt good when they finished. [14:18] The guidelines were written by 26 authors from five continents. These are international guidelines. [14:44] Dr. Collins highlights the pathology. The guidelines state that non-EoE EGIDs should be considered clinicopathologic diagnoses, as EoE is, meaning that biopsies from the affected site in the bowel must show excess eosinophils. [15:10] The guidelines, for the first time, recommend threshold eosinophil values for a diagnosis in the parts of the GI tract other than the esophagus. For a diagnosis of EoE, a threshold value of greater than or equal to 15 eosinophils per high-power field. [15:36] The guidelines now recommend that for a diagnosis of eosinophilic gastritis, a threshold value of greater than or equal to 30 eosinophils per high-power field is present. [15:48] For a diagnosis of eosinophilic duodenitis, a threshold value of greater than or equal to 50 eosinophils per high-power field. For a diagnosis of eosinophilic ileitis, a threshold value of greater than or equal to 60 eosinophils per high-power field. [16:03] For a diagnosis of eosinophilic colitis in the right colon, a threshold value of greater than or equal to 100 eosinophils per high-power field. For a diagnosis of eosinophilic colitis in the transverse and descending colon, a threshold value of greater than or equal to 80 eosinophils per high-power field. [16:12] For a diagnosis in the rectosigmoid, a threshold of greater than or equal to 60 eosinophils per high-power field. [16:18] These numbers may change over time. One or more thresholds will likely change as we gain more experience with these diseases. The pattern won’t change. [16:29] Several studies have shown that the normal pattern of eosinophil presence in the mucosa in the GI tract is that the number increases from the stomach to the right colon and then decreases throughout the colon to the rectosigmoid. [17:40] When giving tours of the hospital, Dr. Collins found that people understood better when they knew the numbers and could see the slides of their biopsies. [18:48] Dr. Collins found literature reviews that suggested that the GI mucosa was often normal in non-EoE EGIDs. She believes that in the next few years, as we publish more and gain more experience, we will realize that is not the case. [19:14] There is already a method for scoring the mucosa in the stomach in eosinophilic gastritis (EoG) and there are abnormalities found in a majority of patients. We have to work on the rest of the GI tract. [19:35] Dr. Collins was surprised that there’s not very good information about the use of proton pump inhibitors (PPIs) in eosinophilic gastritis and eosinophilic duodenitis. There haven’t been studies about that. We need to work on that, too. [20:47] Dr. Collins isn’t sure we can recognize misconceptions about non-EoE EGIDs at this point. It might be premature to label any belief as a misconception. We thought that eosinophils were responsible for all symptoms in EoE, but we know now that is not true. [21:10] Dr. Collins thinks we need to wait a bit before we decide that we know for sure all about non-EoE EGIDs. Ryan is excited to learn what the research will show us next. [21:44] Holly loved learning about the algorithm in the guidelines. [22:01] Dr. Collins says this is the first effort to create uniformity in the way in which non-EoE EGIDs are diagnosed. This algorithm can change over time. It provides signposts for the diagnosis, based on the information we have currently. [22:20] The diagnosis of non-EoE EGIDs should rest on symptoms and the detection of dense eosinophilic inflammation in the mucosa by biopsy and the absence of evidence of other diseases, such as parasitic and other diseases, that might cause dense eosinophilic inflammation in the GI tract. [22:46] The algorithm suggests that the particular anatomic site or sites in the GI tract responsible for the symptoms should be determined, for example, eosinophilic gastritis or eosinophilic colitis. [23:03] The algorithm also suggests that the involved part of the wall in the involved anatomic site should be identified. [23:13] For example, if the symptoms are suggestive of mucosal disease, without deeper mural or wall involvement, the clinical investigation can proceed directly to endoscopy. [23:26] However, if symptoms suggest partial or complete bowel obstruction, which is typical of deep muscular involvement, then imaging studies should be considered before proceeding to endoscopy, to confirm or refute that there is a bowel obstruction. [23:47] If the obstruction is identified, a full-thickness biopsy of the bowel wall may be indicated, possibly requiring a non-endoscopic surgical procedure. If obstruction is not identified, then the investigation can proceed to endoscopy. [24:05] If there is abdominal distension, suggestive of fluid accumulation, consideration should be given to sampling the fluid, using a needle to pull some fluid out to determine if there are numerous eosinophils in the fluid that would indicate eosinophilic ascites, with the eosinophilic inflammation involving the outer lining of the bowel wall. [24:41] The signposts are a little involved. They are a reasonable way to approach working up a diagnosis of non-EoE EGIDs. [25:34] How is EoE ruled out before using this algorithm? It’s sometimes difficult to distinguish symptoms that are relevant only to the esophagus and symptoms that are relevant only to the stomach. [26:26] Someone with upper tract symptoms only will have an upper tract endoscopy, especially if that person has mucosal symptoms that seem to be relevant to the mucosa only. The best thing is to take biopsies of the esophagus, stomach, and duodenum to be sure where the eosinophil infiltrate is. [27:06] If the person has lower tract involvement only, such as diarrhea and lower abdominal pain, and no upper tract symptoms, a transnasal endoscopy could be used to determine if there is EoE in addition to the non-EoE EGIDs. Each case is different. [29:12] As a pathologist, Dr. Collins has seen the guidelines for treating eosinophilic conditions evolve. They’ve become more specific as our knowledge of the data concerning the disease has increased. PPIs are now considered a treatment for EoE. [30:12] Dr. Collins says we need clinical trials testing therapies in children and adults with non-EoE EGIDs. We need to determine which patients have single-site disease and will only have single-site disease, and which patients may develop multi-site EGIDs. [30:42] Those aspects will be addressed in the next version of CEGIR, if it’s funded. [30:49] Ryan tells Dr. Collins it’s been fantastic having her on the show. This has been a good overview of non-EoE EGIDs and the new methods clinicians are looking into to help people get a better diagnosis and treatment. [31:11] Dr. Collins says we don’t have validated instruments yet to measure symptoms, evaluate the mucosa, and evaluate the biopsies under the microscopes. We need to create those validated tools to help us determine the significance of our findings. [31:31] Some data strongly suggest that eosinophilic colitis is different from the rest of the EGIDs; certainly from the upper tract EGIDs. We need to move more deeply into what eosinophilic colitis actually is. [32:05] For our listeners, feel free to check out the article we’ve been mentioning in the show notes. We’ll include a link to it. [32:11] For those of you who would like to learn more about eosinophilic disorders, please visit and check out the links in the show notes. [32:18] If you’re looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at . [32:27] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [32:36] Ryan thanks Dr. Collins for joining us today for this great conversation. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode. Mentioned in This Episode: , Director, Gastrointestinal Pathology APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “The best distribution of guidelines is accomplished by publishing them in the medical literature; sometimes in multiple journals to target audiences of allergists, gastroenterologists, and pathologists.” — Dr. Margaret H. Collins “Guidelines may be helpful to insurance companies to accept that a certain drug is needed by a patient with a certain condition.” — Dr. Margaret H. Collins “It’s always reassuring to have a well-conducted clinical study that verifies that your thinking is correct.” — Dr. Margaret H. Collins “This is the first effort to create uniformity in the way in which non-EoE EGIDs are diagnosed. This algorithm can change over time. It provides signposts for the diagnosis, based on the information we have currently.” — Dr. Margaret H. Collins “We don’t have validated instruments yet to measure symptoms [for non-EoE EGIDs], evaluate the mucosa, and evaluate the biopsies under the microscopes. We need to create those validated tools to help us determine the significance of our findings.” — Dr. Margaret H. Collins
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Eosinophilic Fasciitis (EF), with Dr. Catherine Sims and Jason Ingraham
12/18/2024
Eosinophilic Fasciitis (EF), with Dr. Catherine Sims and Jason Ingraham
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Jason Ingraham, an adult living with eosinophilic fasciitis (EF), and Dr. Catherine Sims, a rheumatologist at Duke University and a Health Services Research Fellow at the Durham Veterans’ Affairs Hospital. They discuss Jason’s experiences living with EF and Dr. Sims’s experience treating EF. They share Jason’s journey to diagnosis and the importance of working with a group of specialists. They share tips on medication and physical therapy, how to communicate with your medical team, and manage your activity and mindset. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz. [1:14] Holly introduces today’s topic, eosinophilic fasciitis, with guests, Jason Ingraham and Dr. Catherine Sims. [1:25] Jason is an adult living with eosinophilic fasciitis (EF). Dr. Sims is a rheumatologist at Duke University and a Health Services Research Fellow at the Durham Veterans’ Affairs Hospital. [1:52] Dr. Sims explains what EF is. Patients may present with symptoms of large plaques on their skin, edema of arms and legs, Raynaud’s Phenomenon, contractures of arms or legs, limited mobility, or loss of the ability to do tasks they used to do. [2:42] EF, as with most eosinophilic disorders, doesn't follow the textbook. Some people will present with one symptom and some with multiple symptoms. There is a disconnect between how we diagnose conditions like EF and how patients present. [3:01] There are major and minor criteria for the diagnosis. As in Jason’s case, it takes time for the symptoms to present. Things develop over time. It took multiple specialists to diagnose Jason. [3:38] Eosinophilic conditions are incredibly different from each other. When Dr. Sims sees a patient with high eosinophils, she thinks of three major buckets: infection, autoimmune diseases, and cancer. [4:12] Patients will often see many different specialists. In Jason’s case, they had done a skin biopsy that wasn’t as helpful as they hoped. That led him to get a deep muscle biopsy to collect the lining of the muscle. [4:47] Fasciitis is the inflammation of the muscle lining or fascia. A sample of the fascia can demonstrate under the microscope if there is a thickening, swelling, or inflammation of the lining of the muscle. [5:24] Dr. Sims as a rheumatologist treats a number of rare diseases. Eosinophilic fasciitis is an ultra-rare disease. [5:43] Jason had a local primary care doctor and a rheumatologist who both did a really good job and referred him to Dr. Sims. She had the benefit of their hard work to guide her next steps. Because EF is so rare, she has pitched Jason’s case twice in rheumatology grand rounds sessions. [6:18] During one of these sessions, Dr. Sims was advised to get the fascial biopsy that ultimately led to the diagnosis. She benefited from the intelligence and input of dozens of doctors. [6:59] In the Fall of 2022, while hiking on vacation with his wife, Jason was extremely fatigued, and his forearms and lower legs swelled. His socks left deep impressions. It was difficult to reach his feet to put socks on. He spent a lot of time uncharacteristically resting. [8:09] Jason’s primary care doctor ran lots of blood tests. He thought it might be a tick bite. Jason started seeing specialists, having tests and hospital visits. [8:57] Jason worked with a rheumatologist in Wilmington, an infectious disease doctor, and a hematologist/oncologist who reached out to a Duke expert. He also saw a pulmonologist and a dermatologist. He got the referral to Dr. Sims for March of 2023. [9:57] The first diagnosis Jason received was after his first hospital stay in January of 2023, when he had bone marrow biopsies, CT scans, ultrasound, and other tests. He was deemed to have idiopathic hypereosinophilic syndrome (IHES). [10:30] It was only a few weeks before his local rheumatologist said his panels were back and one tipped it from an IHES diagnosis to eosinophilic granulomatosis with polyangiitis (EGPA). He joined the Vasculitis Foundation and researched EGPA. [11:03] Dr. Sims told Jason that EGPA was a working diagnosis but he didn’t check all the boxes. There was the underlying thought that maybe it was something else. He had a second flare when he came off of prednisone in June of 2023. [11:48] Dr. Sims scheduled Jason for a muscle biopsy while he was off steroids. That’s how he got the diagnosis of eosinophilic fasciitis (EF). Jason says the disorder is hard for him to pronounce and he can barely spell the words. [12:52] Jason’s wife Michelle encouraged Jason to track his symptoms and medications and keep track of data. Going from specialist to specialist, the first thing he did was give the history. [13:31] Jason found it helpful to create a spreadsheet of data with blood test results, meds, how he was feeling each day, his weight, and even notes about when he had difficulty putting his socks on. Jason is an advocate of owning your continuity of care as you see different doctors. [14:42] Jason says the doctors at Duke talk very well between themselves. [14:49] Jason likes to look back at that spreadsheet and see how far he’s come, looking at the dosage he was on during and after flares and the dosage he’s on now, or zero, on some of the medications. That’s a little bit of a victory. [15:16] Holly works at a private hospital without Epic or CareEverywhere so she gives physical notes to her patients to give to their doctors. She comments that a great PCP, like the one Jason had, can make all the difference in the world. [16:18] Jason’s PCP, Dr. Cosgrove, referred Jason to Duke for a second opinion. That was where he met Dr. Sims. He’s glad to have both Dr. Sims and his PCP accessible. [17:35] Jason says the number of questions you have with this type of thing is immense. When you look up EF, you find very little and the literature isn’t easily digestible by patients. Being able to reach out to your doctors for a quick question is super helpful. [17:56] Jason has been able to do telehealth follow-ups and not always have to travel or take off work, which has been extremely helpful. He has been at Duke a good handful of times for various things but remote follow-ups are helpful. [18:52] Dr. Sims says people just don’t know about EF as it is an ultra-rare diagnosis. Even physicians don’t understand what causes it. It’s lumped in with all other eosinophilic conditions but these disorders don’t all present the same way. [19:19] EoE doesn’t look like EF, even though they’re both driven by the same immune cells. Dr. Sims says the first need is educating providers and patients on what the diagnosis is; awareness in general when a patient is having this swelling of extremities. [19:44] Dr. Sims says at his baseline, Jason is very active with multi-mile hikes. When Dr. Sims met him, he was off from the baseline of what he was able to do. Being aware of your baseline and changes from that is very informative for doctors. [20:07] Dr. Sims talks about the patient being a liaison between multiple specialists. Bringing data to your subspecialist always helps facilitate care and come up with a bigger picture of what’s happening. [20:23] Jason first went to Dr. Sims with the diagnosis of EGPA. She said, let’s treat the EGPA and see what happens but they kept an open mind. With ultra-rare diseases, sometimes it’s difficult for patients not to have a label for their condition. [20:45] Dr. Sims explains to her patients that sometimes we live in the discomfort of not having a label. She keeps an open mind and doesn’t limit herself to just one diagnosis. She seeks feedback from providers who have seen this before and know what works. [21:07] Just as Jason described, you will go through multiple diagnoses. Is this cancer? Is it a parasitic infection? Where did you travel? You will see many subspecialists. It’s extremely anxiety-provoking. [21:31] When Dr. Sims did her grand rounds, she gave a third of the presentation, and the other two thirds were presented by an infectious disease doctor and a hematologist. In these cases, you need more than one subspecialist to complete the workup. [22:10] Dr. Sims says there are a lot of misconceptions that the patient will get the diagnosis right away and the right therapy and get better. There are multiple therapies, not just medications. There are lifestyle and work modifications; it’s a gradual process. [22:22] One of Dr. Sims’s goals for Jason and Michelle is to get back to doing the things that they enjoy, tennis and hiking. That’s a measurement of the quality of life that a patient has. [22:34] Talking to your doctors about how you’re feeling and how you’re functioning is huge. It may be that this is your new normal, but it may also be that we can make adjustments to maximize your quality of life. [23:00] There are misconceptions about the journey of diagnosis and treatment. Have a close relationship with your subspecialist. PCPs have a high burden of expectations. As a rheumatologist who treats rare diseases, it’s helpful to take on a part of that burden. [22:31] If you don’t have good communication with your providers and they aren’t listening to you, you can always go get another opinion. The provider relationship is life-long. [23:43] It’s important for your provider to take what’s important to you into consideration when they make treatment decisions. [25:00] As a rheumatologist, steroids are a first-line therapy for Dr. Sims. Their role is the quick control of inflammation. The goal is always to get you off of the steroids as soon as possible, in the safest way possible. [25:17] When Jason came to Dr. Sims, he was on mepolizumab for the working diagnosis of EGPA. Mepolizumab is one of the primary therapies for EGPA. They talked about not making treatment changes as they were navigating what was happening. [25:40] They didn’t want to make a change of medication and then have that be mistaken for disease activity. They didn’t want too many variables moving at once. [25:47] Typically, the first-line therapy is steroids, meant to help with the swelling, pain, and tightness that patients will get lining their muscles and give them a bit more functionality and decreased pain. [26:00] Long-term, Dr. Sims gives immunosuppressant medication. She prescribed methotrexate for Jason. In EF, the immune system is overly activated, attacking the lining of the muscles and causing the symptoms. [26:51] If you suppress the immune system activity, that leads to decreased inflammation and symptoms in the patient. Steroid use, over a few months, is detrimental, with low bone density, weight gain, high blood pressure, and diabetes. [27:14] Dr. Sims starts with prednisone and folds in medications like mycophenolate or methotrexate. [27:19] Mepolizumab is an interleukin 5 blocker. Interleukin 5 is part of the immune system and is necessary for eosinophils to grow, function, and multiply. The goal of using mepolizumab is to lower the eosinophils that are contributing to the disease symptoms. [27:48] Methotrexate, prednisone, and mepolizumab can work synergistically or independently. Most rheumatologists start with methotrexate or mycophenolate which have fewer side effects and have been around longer. We know how to manage those. [28:08] If there is no response, we may add something like mepolizumab. As Jason was already on mepolizumab, Dr. Sims added methotrexate. [28:20] IVIG, an infusion of immunoglobulin, has also been used as a quick way to control inflammation. It is used in other autoimmune diseases like myositis, which is inflammation of the muscle itself. [29:08] With untreated eosinophilic fasciitis, the lining of the muscle may continue to be inflamed and can lead to fibrosis, damage that cannot be reversed. The patient can become very disabled. Contracture is one result of this. [30:16] Jason says when he tried a new medication, he monitored if it was a good fit and if the side effects were less impactful than the underlying disease. Dr. Sims adjusted his dosages or tried to get off certain medicines as needed. [30:59] After his muscle biopsy from his left calf, it took about a month to get back to walking easily. He was already in physical therapy, going many times for a variety of things. He had back pain, potentially related to his EF. His physical therapist was great. [31:56] The stretches alternated between upper and lower body. Jason bought tools to do the stretches at home. When he’s not feeling as well, he goes back to some of those same stretches. When he was on steroids, he took long walks to strengthen his bones. [32:39] Jason started making phone calls to supportive family and friends on his walks and started listening to podcasts related to his condition or medications. Getting back to tennis and hiking is important to Jason. He’s happy to be out there. [33:20] Jason was open with his employer about his condition. Some of the weekly meds can make him not feel well. His employer gives him some flexibility. He has good days that far outnumber the bad days. He doesn’t have to think about EF too much now. [34:33] It’s nothing like when he was in a flare, especially when he was in a flare before being diagnosed. What gets him through a bad day is giving himself some grace and understanding while he waits for his meds to catch up. He rests more than he wants to. [35:33] Low-impact exercises like walking help Jason. He’s trying to find a support network that gets EF. That led him to APFED, to find anyone experiencing something like what he was. He saw a conference that included a session on EF. [36:09] Jason signed up for the conference and there he met Ryan’s mother who has EF. They were each the first person the other had met with EF. They decided to connect after the conference. They talked on the phone for about an hour. [36:39] She told Jason how she got into APFED and talked a lot about her son who had eosinophilic diseases. Soon after, Jason talked to Ryan as a primer for this podcast. [38:15] Having a community to relate to, even if it’s one person, is massive. It can make you feel less isolated. [38:42] Holly says it’s hard having a chronic illness. She thanks both Jason and Dr. Sims for sharing so much information and their journey and she asks for last words. [38:58] Dr. Sims believes finding a community is critical. She interviews a lot of patients for research and isolation is a frequent theme. Even the doctor doesn’t know what it’s like to live with the condition you live with daily. As Jason said, give yourself grace. [39:33] Dr. Sims tells her patients that they’re different from the general population because they have to spend so much time and energy managing their condition that they can’t do x, y, or z today, and that is OK. She says to stay motivated and positive. [40:12] Find what works for you. Walking is good for your physical and mental health. Have the goal of getting back to what makes you happy. Take initiative and find non-medication ways to recuperate. You have control over ways you can feel better. [40:43] Connect with others and share your story, like Jason did today. It may make someone’s journey a little easier and make them feel less alone. Utilize your condition for good, for a bigger purpose. [41:04] Jason had wished he could meet someone who could tell him what EF would be like over the years. He says to stay positive and find out what you have control over. Jason believes the future is bright for being able to do many things for a long time. [42:26] For our listeners who would like to learn more about eosinophilic fasciitis, please visit and check out the links in the shownotes. [42:33] If you’re looking to find a specialist who treats eosinophilic disorders, like Dr. Sims, you can use APFED’s Specialist Finder at . [42:43] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [42:55] Ryan thanks Jason and Dr. Sims for joining us for this excellent conversation. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode. Mentioned in This Episode: , rheumatologist APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “EF patients may present with large plaques on their skin, edema of arms and legs, Raynaud’s Phenomenon, contractures of arms or legs, limited mobility, or loss of the ability to do tasks they used to do.” — Dr. Catherine Sims “Steroids are … first-line therapy. Their role is the quick control of inflammation. The goal is always to get you off steroids as soon as possible, in the safest way possible.” — Dr. Catherine Sims “Methotrexate, prednisone, and mepolizumab can work synergistically or independently. Most rheumatologists start with methotrexate or mycophenolate which have fewer side effects and have been around longer.” — Dr. Catherine Sims “Stay positive and find out what you have control over. The future is bright for being able to do many things for a long time.” — Jason Ingraham
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The Evolution of Eosinophilic Gastrointestinal Disorders, with Dr. Dan Atkins
11/22/2024
The Evolution of Eosinophilic Gastrointestinal Disorders, with Dr. Dan Atkins
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Dr. Dan Atkins about Children’s Hospital Colorado’s multidisciplinary treatment program for eosinophilic gastrointestinal disorders (EGIDs). In this episode, Ryan and Holly interview their friend, Dr. Dan Atkins. Ryan was a long-time patient of Dr. Atkins and Holly worked as a feeding specialist with Dr. Atkins at Children’s Hospital Colorado. Together, Dr. Atkins and Dr. Glen Furuta developed the Gastrointestinal Eosinophilic Disease Program at Children’s Hospital Colorado as a multidisciplinary treatment center for pediatric patients impacted by eosinophilic gastrointestinal diseases. They discuss how treatments and medicines have developed over the years. The clinic started with local patients but now also receives referrals from around the United States. Listen in for tips on identifying EGIDs and using multidisciplinary treatment. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz. [1:19] Holly introduces today’s topic, the evolution of eosinophilic gastrointestinal disorders, and the guest, Dr. Dan Atkins, a pediatric allergist at Children’s Hospital Colorado. [1:32] With more than 40 years of experience as an allergist, Dr. Atkins has seen the evolution of eosinophilic disease patient care first-hand and helped establish the Gastrointestinal Eosinophilic Disease Program at Children’s Hospital Colorado. [1:46] The Gastrointestinal Eosinophilic Disease Program is a multi-disciplinary program designed for the optimal evaluation and treatment of children with eosinophilic gastrointestinal disorders. [2:10] Dr. Atkins thanks Holly, Ryan, and APFED for programs like this podcast to help educate the population of patients with eosinophilic gastrointestinal diseases. [2:39] Dr. Atkins chose a pediatric residency. The last rotation was with an incredible allergist, Dr. Lenny Hoffman, in Houston. Dr. Atkins loved seeing patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis. [2:59] The thing Dr. Atkins liked about it was he could take kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well. He could see a change in their quality of life. That got him started. [3:22] Dr. Atkins did an allergy and immunology fellowship in Buffalo, New York with Dr. Elliott Ellis and Dr. Elliott Middleton who had just written the Allergy: Principles and Practice text. They were incredible, brilliant mentors and wonderful people. [3:55] Dr. Atkins went to the National Institutes of Health to do basic science research after learning of a double-blind, placebo-controlled food challenge by Dr. Allan Bock and Dr. May in Denver. [4:27] Dr. Atkins did a clinical project on food allergy with Dr. Dean Metcalf, which was one of the first double-blind, placebo-controlled food challenges in adults. They published two papers on it. [4:47] Then Dr. Atkins went to work on the faculty of National Jewish Health. He was there for 25 years. [5:04] Dr. Atkins was invited to join the Children’s Hospital of Colorado because they wanted to start an allergy program there. [5:21] Dr. Atkins got interested in eosinophilic gastrointestinal diseases in 2006 after he saw a patient who had had difficulty eating, eosinophils in his esophagus, and food allergies. In another state, a doctor had put him on an elimination diet and he got better. [5:42] The patient moved to Denver. Dr. Atkins saw him and found the case to be interesting. He looked in the literature and found an article on eosinophilic esophagitis by Dr. Alex Straumann. [5:53] A gastroenterologist, Dr. Glen Furuta, came to Children’s Hospital, looking to work with an allergist. Dr. Atkins met with him and they hit it off. They saw the need for a multidisciplinary program to take care of these patients. [6:31] Dr. Atkins has always been interested in diseases that led to eosinophilia. Most of them were allergic diseases. Eosinophilic esophagitis and other eosinophilic gastrointestinal diseases came along with much more of a focus on eosinophils in the gut. [6:45] The first case of eosinophilic esophagitis that Dr. Atkins treated was a patient in 2006. He believes he probably missed earlier cases just by not asking the right question, which is, “Does your child eat slower than everybody else?” [7:18] Once Dr. Atkins started asking patients that question, it stunned him to find out how many patients said that was part of the issue. He followed up with testing and, sure enough, they had eosinophilic esophagitis. [7:45] Dr. Atkins says that, in general, eosinophils are present in allergic conditions. If you look at “allergic snot,” and stain it up, it’s full of eosinophils. If you have eosinophilic esophagitis and allergic rhinitis, if you swallow snot, it will impact your EoE. [8:40] Dr. Atkins tends to be more aggressive with using a topical nasal steroid spray with patients who have allergic rhinitis because that decreases the eosinophils in the nose. [8:50] Dr. Atkins says since eosinophils are on their way to areas that are involved in allergic inflammation, that’s how Dr. Atkins got interested in eosinophils. It played out with the multidisciplinary group and eosinophilic esophagitis. [9:07] Ryan went to see Drs. Atkins and Furuta when he was eight. Ryan is so thankful he was able to go to their clinic and is grateful that the doctors helped to create one of the first programs dedicated to treating EGIDs in the U.S. [9:40] Dr. Atkins credits Dr. Furuta with the multidisciplinary program. They discussed who needed to be part of it. A gastroenterologist first but Dr. Atkins thought an allergist was also necessary. Treating other allergies helps the patient’s eosinophilic condition. [10:51] They decided they needed excellent nurses who loved working with kids. A lot of the kids had trouble eating, so the group needed feeding therapists and dieticians because these kids have a limited diet. They also needed a pathologist to read the slides. [12:59] Because this is a burdensome disease, they needed psychologists for the child and the family. Learning coping mechanisms is a big part of the experience. [14:20] As the program progressed, they saw they needed an endocrinologist to look at the children who weren’t growing as expected. In clinic, they needed a child health person who could play games with the kids and keep them engaged during the long visits. [14:44] That was how the program evolved. They had an idea but they had to show people it would be an active clinic that would grow and they had enough patients to warrant the program. It happened quickly. [14:54] The program is fortunate to have a wonderful group of people who get along well and check their egos at the door. There are lots of conversations. Everybody’s willing to listen and put their heads together. They compare notes and histories. [15:46] Holly had been working as a feeding specialist at the hospital. Someone was on leave so Holly was put into the clinic. She had never heard of EoE; she didn’t know she had it! Her first meeting was a roomful of professionals comparing notes on patients. [16:31] Holly was in disbelief that these medical professionals met together for an hour weekly to discuss their patients with each other. Later, Holly followed a patient with Dr. Atkins, then Dr. Furuta, then a dietician, and then a nurse. [17:01] As she followed the patient, Holly listened and recognized the symptoms. She thought that she might have EoE! She introduced herself to Dr. Atkins and asked for a referral for a diagnosis. She was diagnosed that year with EoE. [17:25] Holly sees many unique things about the program. She was impressed that they had the foresight to include a feeding specialist, not a common specialty at the time. Holly also thinks it’s neat that the clinic sees patients from all over the country. [18:01] Dr. Atkins says the availability of care is improving across the country. When the program began, people had not heard of eosinophilic esophagitis, not even the local pediatricians. Allergists were just becoming aware of it. They had to be educated. [18:29] There were people in other communities who didn’t have access to multidisciplinary care. Over time the word has spread. Pediatricians are referring patients to the clinic for diagnosis. Care availability has improved. [18:55] Not every patient needs a multidisciplinary program. If you have mild to moderate eosinophilic esophagitis and you’re responding to a current therapy, are doing well, and are communicating well with your provider, that’s great! [19:10] If you need a second opinion or if you have a complicated case, there are some benefits to multidisciplinary care. [19:33] The providers at the clinic listen to the children as well as to the parents. When a food is removed, a dietician can suggest an alternative the child might like. [20:07] The clinic wanted to treat local patients but go beyond that, as well. They learn a lot from seeing patients from all over the country with different exposures and being treated by different doctors. [20:17] When Ryan was young, he would go from his home in Georgia to Denver, yearly. He reflected it felt like summer camp. He got a scope one day and saw the full team of specialists the next few days. It was different from how he was treated before. [21:06] Ryan says he was listened to and heard, and it was such a great experience for him as a patient to be seen in Dr. Atkins’s clinic. [21:46] Dr. Atkins says they are trying to teach children to be their own advocates. If the doctor does not listen to what the patients have to say, why should they be involved? [22:50] A patient experience at the clinic starts with somebody deciding they need to go there and get a second opinion or a diagnosis. They get a referral to the clinic. Dr. Atkins mentions the need for administrative staff as part of the clinic team. [23:40] The patient fills out forms and gives their records to be reviewed by a physician before being seen to see if the clinic is a good fit for them. If it is, the patient is scheduled with an appointment for each doctor and professional in the clinic. [24:02] The patient records are seen by each professional on the team for how they relate to the professional’s specialty. They decide what tests need to be done and if they are covered by insurance. [24:27] The care team meets before clinic to talk about all new and follow-up patients. Then the patient comes in to see the providers, one after another. Patients don’t see all the providers in the same order. The endocrinologist and psychologist are not in the clinic. [25:39] The clinic visit takes three to four hours. It may involve skin testing for allergies or spirometry for lung function. The patient is scheduled for an endoscopy. When appropriate, they offer transnasal endoscopy, which takes only eight minutes and does not require anesthesia. [27:11] If the patient has a stricture and the esophagus needs to be dilated, the patient is asleep for that. There is also the esophageal string test, developed by Dr. Furuta. It takes a little over an hour and tells whether there is active disease or not. [28:02] Care has been made easier. Patients have different options for testing. Holly points out that the family is a part of the team and they are involved in every process and decision. Dr. Atkins says that shared decision-making is a cornerstone of care. [29:31] Dr. Atkins says what happens in the room is the care provider and patient connect and the patient talks about their problems with somebody they trust. To get the patient to do what they need to do, they have to understand and feel understood. [31:03] When Dr. Atkins started treating patients with asthma at National Jewish, patients came for a long evaluation, sometimes months. The only treatments were theophylline and steroids. There were side effects to those medications. [31:39] Dr. Atkins says it has been wonderful to be involved while new treatments have evolved. For eosinophilic esophagitis, when diet works for people, it works. He shares the experience of a teen who is doing great on a diet eliminating milk and eggs. [32:56] Don’t discount diet. It’s still up front. On the other hand, that doesn’t work for some people. A metered dose inhaler with the puff swallowed may work for some. That’s ideal for teenagers. There are other treatment choices like budesonide. [34:14] Swallowed steroids go to the liver, where they are metabolized. Now biologics are revolutionizing treatment. Not everyone needs biologics but they’re a great choice for some. [35:30] A patient starting out doesn’t need biologics as a first treatment. Other therapies may be effective and cheaper. If a patient doesn’t respond, they can go to a biologic. More treatments are being developed. [36:42] Dr. Atkins wishes for a way to determine the food trigger with a simple test. [38:00] Dr. Altkins remembers Ryan as a little kid who should have gotten off of milk but he just wouldn’t do it. He also recalls a patient who thrived when he was put on the right elimination diet, giving up only a couple of foods. [38:33] Dr. Atkins doesn’t want to diminish any of his patients. Every patient is an individual. It’s so much fun working through the problems, the goal, and the adjustments to get there and how the patient is dealing with it, and then watching them do better! [40:35] The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be lifelong. But in the lifetime of patients he is seeing now, Dr. Atkins thinks we will see a cure, or at least, much easier, better treatments. [40:56] In the population Dr. Atkins treats, they start treatment and all of a sudden, they’re not having trouble swallowing. Everyone who had a dilation said they would do it again when needed. They can swallow better. [41:44] But then, they have to maintain control of the inflammation. When people feel better, their impetus to take the medication drops off. If they stop taking their medications, a month later, they can’t swallow their bagels. [42:18] There are holidays, such as Halloween, that are challenging for kids who are on elimination diets. If they collect candy but can’t eat any of it, that may be a problem. [42:48] People who don’t have EoE don’t understand not being able to swallow. Dr. Atkins sees dads who have this but don’t want to go get checked out. He tells them they need to be examples for their children and go get endoscopies to know if the condition is familial. [43:53] Dr. Atkins says there are a number of other excellent programs in the country. [44:24] Holly thanks Dr. Dan Atkins for sharing his expertise to help others and continually teaching the medical community how to recognize eosinophilic diseases and optimize care for all patients. [44:40] Eosinophilic diseases are not going away. Allergists need to learn the ins and outs of all different eosinophilic disorders. The medications available to treat those disorders are increasing. [45:02] Early in your career as an allergist, learn as much immunology as you can and how the biologics work and the newer medications coming out. Follow side effects so you know what to say to your patients and what to look for. [45:20] A lot of EoE patients get picked up in the allergist’s office because they have other allergic diseases. As an allergist, ask if the child or parent eats slower than everybody else. [45:57] Ryan thanks Dr. Dan Atkins for joining today and personally, for all he has done to treat Ryan over the years. He thanks Dr. Atkins on behalf of APFED and for being instrumental in many APFED conferences and educational materials. [46:30] Dr. Atkins’s biggest hope is that people sort out the pathways that lead to eosinophilic esophagitis and that we will have an array of targeted treatments for individual patients to cure that disorder for that patient without side effects. [47:50] Dr. Atkins thanks Ryan and Holly again for the opportunity to join them. It’s been such a pleasure. He thanks APFED again. He has been a big fan for years. Giving patients a voice to share their stories is incredibly important. [47:34] For our listeners who would like to learn more about eosinophilic disorders, please visit and check out the links below. [47:41] If you’re looking to find a specialist who treats eosinophilic disorders, you can use APFED’s Specialist Finder at . [47:51] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [48:07] Holly thanks Dan and also thanks APFED’s Education Partner Bristol Myers Squibb, GSK, Sanofi, and Regeneron, who supported this episode. Mentioned in This Episode: , pediatric allergist APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “I loved helping patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis. You could take these kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well.” — Dr. Dan Atkins “With patients who have allergic rhinitis, we tend to be more aggressive with using a topical nasal steroid spray because that decreases the eosinophils in the nose.” — Dr. Dan Atkins “We are trying to teach children to be their own advocates. … If you don’t listen to what the patients have to say, why should [the patients] be involved?” — Dr. Dan Atkins “The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be a lifelong phenomenon.” — Dr. Dan Atkins
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Navigating Eosinophilic Esophagitis in College with Kate Goncalves
10/24/2024
Navigating Eosinophilic Esophagitis in College with Kate Goncalves
Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED’s Executive Director, interview Kate Goncalves about her diagnosis and treatment journey with EoE. In this episode, Ryan and Mary Jo discuss with Kate Goncalves how she lived with her symptoms for years before finally bringing them to the attention of her primary care physician at age 16, and how she was connected with a gastroenterologist and diagnosed with EoE. Kate discusses her transition from pediatric to adult care, and how she and her care team prepared for her to travel to go to college. They talk about her treatment plan of eliminating milk and using medications, and how it is a challenge to navigate EoE during the long days on her college campus. Kate also talks about the EoE research project she is working on as part of her pre-med studies, and shares advice for people living with EoE and going away to college. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Ryan Piansky introduces the episode, brought to you thanks to the support of education partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Mary Jo Strobel. [1:31] Mary Jo introduces Kate Goncalves, a 20-year-old living with EoE. Kate is the 2024 recipient of The APFED Abbott College Scholarship, thanks to a grant from Abbott, the makers of the EleCare® brand elemental formula. [2:05] Kate is from a small town in Connecticut. She is a junior at Vanderbilt University, studying biology and anthropology. She grew up with day-to-day symptoms of EoE but only expressed the symptoms to her doctor when she was 16 years old. [2:23] At that point, she underwent testing and was diagnosed. Since then she has been trying to find a treatment plan that works for her. She has navigated changes in her treatment plan while going away to college. She comments that, in college, you don’t always have control over the food you eat. [2:42] It has been a challenge but she has a great support system and care team. [3:15] In middle and high school, Kate got a food impaction nearly every day at lunch. She thought it was normal. When she finally brought it up to her primary care physician, the doctor suspected EoE. She also had the symptoms of heartburn or acid reflux. [4:15] Kate immediately had an endoscopy scheduled and was then diagnosed with EoE. [4:22] Prior to a diagnosis, Kate coped with symptoms by drinking “a ton” of water with foods to help them go down her esophagus, which was narrowed from scarring. She also avoided bread and meats. She only recognized these as adaptive behaviors after she was diagnosed. [5:32] Kate was referred to a gastroenterologist. That doctor is still part of Kate’s care team. She also saw a nutritionist when looking for a treatment plan that worked for her. [6:02] Kate avoids anything with dairy in it. Her elimination diet removed anything made with butter, milk, yogurt, and more. At her follow-up endoscopy, her eosinophils were way down so she didn’t have to go through the six-food elimination diet. She was very grateful. [6:43] Mary Jo clarifies for listeners who may not be familiar with the six-food elimination diet, that the foods removed from the diet are typically milk, egg, wheat, soy, peanut/tree nut, and fish/shellfish. [7:05/] Kate says it was a tough transition because more foods than you might expect have milk in them. She is grateful she didn’t have to cut out gluten or nuts. [7:32] Kate admits that sometimes she knows there is dairy in the food and eats it anyway. Then the symptoms are most often severe acid reflux and heartburn. She’ll get a food impaction if she’s been eating dairy for days or a lot of it at once. [8:35] At school, sometimes the dining hall workers aren’t aware if a food has dairy in it. Some foods are mislabeled as vegan. So Kate often has dairy without knowing it until symptoms appear later. [9:12] Kate is on a proton pump inhibitor twice a day and a steroid medication. Her first treatment was the elimination of dairy. The summer before going to college, she was also put on these two medications, in case she was exposed to dairy. [10:50] Kate had to switch from one steroid medication to another because the first one wasn’t working for her varying schedule. She asked her doctor for another medication that fit her schedule better. [11:31] Kate is very grateful to feel autonomy over her treatment plan. She feels her gastroenterologist is amazing. Kate is always free to give feedback about how she is feeling. [11:46] Kate feels a more present role in her medical appointments now, versus before she was diagnosed. Both with her gastroenterologist and her primary care physician, she has learned to be comfortable being forward and truthful with her doctors. [13:16] For patients who have not learned to speak up to their care team, Kate suggests being patient. It takes time to get used to the structure of appointments, follow-up appointments, and appointments with a new doctor. [13:25] When Kate transitioned from her pediatrician to her adult doctors it took her a while to become comfortable with her gastroenterologist and her primary care physician. Don’t be afraid to pose questions and concerns, even questions about other treatment plans. [13:56] Your doctors are there to listen to you and to help you, and you can only gain from bringing something up to your doctor that you are afraid to bring up or that you aren’t sure how the conversation is going to go. [14:47] Kate explains how she tells her friends about her EoE triggers and symptoms and what eosinophils do to her esophagus. Most of her friends study biology and the immune system, so they can understand her condition and needs. [16:12] EoE impacts Kate’s social life. Kate sometimes sits out of activities involving dinners or events with food present. She doesn’t want to be exposed to a trigger food. She has also missed events and activities due to hospital visits and appointments. [16:37] If Kate is having a flare-up of her symptoms, she will also miss activities. All these things lead to feelings of exclusion. No one she knows has EoE. [16:55] Because of her treatment plan and her medications, Kate’s symptoms are somewhat limited so she can participate in activities as she chooses. [17:14] Kate’s advice for people who know someone with EoE is to be open-minded. EoE is kind of an invisible disorder. People often think that being allergic to dairy is lactose intolerance, which it is not. Do some research about EoE and its effects. Offer support. [17:42] A patient has a care team whose job is to care for them. When family and friends include you and care for you, it’s a very different feeling. As a friend, be patient and offer any support you can. [18:34] When Kate travels, her best tool is communication. Informing food service staff about your allergy is the easiest way to ensure that the food you eat is safe. Kate does lots of research when she travels. This includes looking on restaurants’ websites for dietary restrictions. [20:43] Kate prepared for college by making sure she had a full semester supply of medications and ensuring that she was in close contact with her medical care team over the phone and through MyChart. [21:19] She made plans with her gastroenterologist to make sure that if anything did come up or if the treatment plan wasn’t working in the college setting, they would talk it through when it was needed and not wait until she was home for Thanksgiving. [21:54] Kate is thankful she chose a school that was connected to a hospital. She feels more safe and prepared for a bad food impaction. She knows she can seek medical attention and have a team on-site very soon. [22:43] The quality of the dining at the college was a factor in Kate’s choice of schools. Vanderbilt has a dining hall completely free of the eight main allergens. When she eats there, she knows that the food she is eating will be safe, without having to ask. [23:34] For people living with an eosinophilic disorder like EoE, Kate has two tips about preparing to go away to college. First, don’t feel limited by your disorder. At first, Kate was afraid of being far away from her care team, but she couldn’t be happier now. [23:56] At college, there are resources and counseling to help you. Being away from home has taught Kate to be responsible as an adult for the treatment of her disorder. So, second, use college as an opportunity to gain responsibility in treating your disorder. [25:11] Kate is working in a biomedical engineering lab at Vanderbilt University that is researching a way to diagnose and monitor EoE using saliva. They use Raman Spectroscopy to look for biomarkers in saliva from people with EoE, not found in the saliva of healthy people. [25:51] A successful test would be less costly and quicker than an endoscopy with anesthesia. It would provide a point-of-care diagnostic that would lower the cost and increase the efficiency for patients. [28:09] Raman Spectroscopy is a form of spectroscopy that measures the vibrational frequencies between chemical bonds. It reads the composition of biological samples. It can tell the amounts of lipids, proteins, or amino acids. [26:37] The lab is researching the differences in the saliva of people with EoE from the saliva of healthy people. If they can find a difference, and if that difference is universal, we might be able to diagnose EoE using Raman Spectroscopy. [26:55] Kate says that would be awesome because the anesthesia of endoscopy is “a lot”, every time. [27:09] Kate is on the pre-med track, which includes doing research. She wanted her research to be on something that she cared about. She is happy to be at a school that is a top research institution. [27:48] When she learned of this biomedical engineering lab researching ways to diagnose EoE, she immediately reached out to the Principal Investigator and was invited to join. She has been a part of the lab for over a year and it’s been an amazing experience! [28:15] Before going to medical school, Kate plans to take one or two gap years after she graduates so she can further her research with EoE or with other eosinophilic disorders. She would love to see advancements in the field. [29:16] Kate finds that the most challenging part of living with EoE is feeling lonely, She has never met anyone else with EoE. No one knows what it is when she first explains it to them. It’s not a super common disorder. [29:35] Because EoE is a rare condition, Kate doesn’t have much of a community around it in her life. She was excited to learn about and connect with APFED through social media. Even so, it is easy to feel alone in her personal life. [29:54] Kate doesn’t want to have to worry constantly about her food or when to take her medications. She wants to live like a normal, healthy college student, but she can’t. Sometimes she doesn’t take her disorder as seriously as she should. [30:25] Sometimes Kate will have that ice cream because everyone else is having it. She wants to live as though she doesn’t have EoE. Navigating that without a community that relates to her struggle has been a challenge. [30:51] Kate’s parents, siblings, and friends support her, but it’s not the same as having someone who completely understands and is going through it. She feels lonely. [32:24] Kate says that awareness is super powerful. She went 16 years without knowing she had EoE. She wasn’t educated on it. She is sure there are many living with untreated EoE just as she was. [32:42] Kate encourages anyone listening to spread awareness for eosinophilic research. People are struggling with it. Kate was super excited to come on the podcast today to share her story with anyone in college who might be struggling with EoE. [33:05] Kate says, if you’re struggling with eosinophilic disorders, you’re not alone. I’m there, too! She encourages listeners to continue to spread awareness and advocate for eosinophilic disorders. [33:13] Ryan and Mary Jo thank Kate Goncalves for joining the podcast episode to share her story and help spread awareness. [33:19] For our listeners who would like to learn more about EoE, please visit . If you’re looking to find a specialist who treats EoE, you can use APFED’s Specialist Finder at . [33:40] Kate thanks Ryan and Mary Jo for this opportunity. [33:43] Mary Jo also thanks Bristol Myers Squibb, GSK, Sanofi, and Regeneron, APFED’s Education Partners who supported this episode. Mentioned in This Episode: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “I go to school halfway across the country so I don’t have close access to my care team and support. … Knowing I was going to be exposed to some dairy, my GI doctor thought it was best to put me on the steroid medication.” — Kate Goncalves “Your doctors are there for you. They're there to listen to you and to help you and you can only gain from bringing something up to your doctor.” — Kate Goncalves “Feeling support from family and friends… you feel so included and cared for. Feeling that from friends versus feeling that from your care team… they’re very different. Your care team cares about you but that’s their job.” — Kate Goncalves “I think anyone with a chronic illness would relate to this. I just turned 20 and I’m in college. I don’t want to constantly worry about the food I’m eating and when to take my medications. I want to live like my friends.” — Kate Goncalves
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Treating EoE as an Allergist with Dr. Priya Bansal
09/19/2024
Treating EoE as an Allergist with Dr. Priya Bansal
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Dr. Priya Bansal about an allergist’s role in treating EoE. In this episode, Ryan and Holly discuss with Dr. Priya Bansal her career in internal medicine, pediatrics, allergies, and immunology. She emphasizes the importance of patient advocacy and encourages parents to not accept the diagnosis that their child is a picky eater when the child is refusing food. Dr. Bansal talks about the process of reaching a diagnosis and EoE treatment options. Listen to this episode for more information about living with EoE and how an allergist can help. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:51] Ryan Piansky introduces the episode and co-host, Holly Knotowicz. Ryan and Holly will talk about eosinophilic esophagitis (EoE) and how an allergist can help. [1:25] Holly introduces Dr. Priya Bansal, an internist, pediatrician, and allergist, who is on the faculty of Northwestern Feinberg School of Medicine and practices at the Asthma and Allergy Wellness Center in Illinois. [2:06] Dr. Bansal does research and consulting and in a private practice. Throughout her 20-year career, she has enjoyed treating chronic and difficult-to-treat diseases. [3:06] Now, she enjoys patient advocacy, advocating for EoE, and working with the American College of Allergy, Asthma, and Immunology House of Delegates and the American Academy of Allergy, Asthma, and Immunology. [3:38] For new listeners, EoE is an allergic and immune disease of the esophagus. With EoE, eosinophils are found in the lining of the esophagus, causing inflammation, and inviting more eosinophils. EoE is a chronic inflammation of the esophagus. [4:30] A child might have symptoms of food refusal, regurgitation, and abdominal pain. Adults may feel food sticking. The standard for finding eosinophils is endoscopy with six biopsies; two proximal, two mid, and two distal. [5:24] It is a patchy disease, so the allergist will want to partner with a gastroenterologist who will do the biopsies at the three different levels. [6:10] Holly tells how she didn’t get diagnosed until she was in her mid-twenties. Her doctors thought she was vomiting for attention. They were not familiar with EoE. She was diagnosed as an adult when working at a major hospital. [7:00] An allergist at a big academic center, working together with a team of doctors from multiple disciplines, may find it easier to diagnose EoE. Many allergists are not working on multi-disciplinary teams. [7:34] An allergist can look at the resources in the community. Dr. Bansal has several gastroenterology centers that refer patients to her. They partner with Dr. Bansal on the diagnosis and treatment. [8:02] In other clinics, it may be the gastroenterologist who takes the lead in treatment and refers to the allergist to manage the allergic disease that exists on top of the EoE. [8:21] As a patient, the diagnosis process depends on where you live. If you have symptoms, don’t give up. When Dr. Bansal started, she had to ask pathologists to stain biopsies for eosinophils. Today, staining is done routinely; she doesn’t need to ask for it. [9:07] You are your best advocate. If somebody doesn’t believe you, that doesn't mean somebody else won’t. [9:22] Holly is a feeding specialist in Maine. In the three years she has been there, more than 100 people whom she has referred have been diagnosed with EoE. [10:24] Dr. Bansal says that whether you see an allergist or a GI doctor, depends on which specialty takes the lead on EoE in your community. If you do not have a good rapport with your doctor, make a change. Partner with a doctor who advocates for you. [11:59] Dr. Bansal advises that when seeing a different doctor, to print out your biopsies to bring. If you are using a biologic therapy, print out the scope that you had right before your biologic therapy, too. That biopsy is your golden ticket if you switch insurance companies. [13:02] Dr. Bansal uses Care Everywhere, but she wants to see prints of your labs anyway. Not everyone opts into Care Everywhere. She likes the Patient Portal and she is looking forward to someday having a universal portal. [13:43] Dr. Bansal recommends patients sign up with the Portal for their allergist and GI doctor to facilitate communication. [15:14] Patients can scan their printed scope reports and share them with their care team, such as by putting them on a keychain USB drive, in a photo album on a phone, or a scanning app on a phone. There are different ways to store the data. [15:39] Ryan describes how his mother organized his medical history, including all prescriptions, every procedure he has had, and all the doctors he has seen. Ryan was diagnosed at two-and-a-half years old, after visits to six or seven doctors. [17:30] Dr. Bansal participated in an ACAAI video about the difficulty of diagnosing EoE. The video is linked in the show notes. [17:41] It is a challenge to diagnose EoE. Some children have milder forms of the disease. When it’s familial, some patients think it’s normal for the family. Food sticking is not normal for everyone. [20:08] The patient may live in an area with a lack of access to a knowledgeable specialist. Sometimes the patient just doesn’t know who to see. When you make an appointment, call ahead and ask if they treat EoE at that office. Not all allergists do. [22:18] A podcast episode with Dr. Emily McGowan told of her research study on the prevalence of EoE in urban vs. rural areas. It’s not about rural vs urban but about having access to a specialist. Rural patients couldn't find a specialist. [22:44] Ryan notes that you can use the Specialist Finder at to see if there is a specialist in your area. [23:12] With younger patients, Dr. Bansal finds that food refusal is a sign of EoE; that, and abdominal pain. By age 10, patients can say they are having trouble swallowing or that food is getting stuck. [24:28] Holly finds that pediatricians are often not aware that picky eating and food aversion or food refusal are different situations. Food aversion comes from painful swallowing. Dr. Bansal is trying to create an understanding of EoE among pediatricians. [26:15] Another sign Dr. Bansal watches for is FIRE (Food-induced Immediate Response of the Esophagus), which is different from PFAS (Pollen Food Allergy Syndrome). FIRE is a narrowing of the esophagus; PFAS is an oral issue. [27:13] As we get more research and learn more about the disease state and the nuances, the hope is that we could educate pediatricians on how to differentiate a picky eater from a patient with food aversion, using compensation mechanisms to swallow. [28:15] Ryan compares this episode to a “greatest hits” episode, referring to FIRE and compensation mechanisms in the pediatric patient population. Those are great episodes for our listeners to go back and hear again. [29:01] When a patient has an EoE diagnosis, Dr. Bansal practices shared decision-making with the patient. She outlines four options for the patient. The first option is eliminating dairy and known food allergens from the diet. [31:01] With a food-elimination diet, ask your nutritionist what you need to eat more of because of the foods you are eliminating. If you’re taking away dairy, you want to make sure you’re getting calcium and Vitamin D. If you’re taking away wheat, you need zinc. [31:20] The second option Dr. Bansal talks about with her patients is a high-dose proton pump inhibitor (PPI). The third option is topical budesonide, swallowed with honey. Budesonide is a 12-week prescription. Flovent can also be swallowed. [32:46] The fourth option is dupilumab. Insurance companies may require you to fail option 2, the PPI, for eight to 12 weeks before paying for this. [33:40] Dr. Bansal wants patients to understand that they can change between treatment options but she wants a patient to stay on an option for eight to 12 weeks and get a scope to see how it works before switching to another option. Follow-through is necessary. [34:42] Listeners can watch the video of Dr. Jonathan Spergel’s presentation at EOS Connection 2024 to learn more about eliminating milk for EoE and PPI-responsive EoE patients. [35:14] Dr. Spergel also touched on nutritional deficiencies from some diet therapies. APFED just recorded a great podcast episode on that, as well. [35:31] Dr. Sara Bluestein made a presentation at EOS Connection on eosinophilic asthma which included an overview of biologic treatments, not just for EoE but for many eosinophilic disorders. [36:09] Holly loves Dr. Bansal’s team approach with patients, where she acts as the coach, helping guide them toward the decision that will work best for their lives. [36:20] As a feeding specialist, Holly is excited about the dupilumab option for patients who are on feeding tubes for severe inflammation in the esophagus. [38:18] Budesonide oral is for 11 and up and dupilumab is for ages one and up. Any doctor who will give a patient the proper care may prescribe these to the patient. For dupilumab, the success rate goes up over time, starting at around 60% to around 80%. [39:27] You want to get the biologic prescribed and approved for EoE. If it is approved for atopic dermatitis, the dosing is too weak for EoE and it fails at two-week dosing. [39:56] Biologics need to be continued even when symptoms go away, as the symptoms will return. These two medicines are immunomodulators, not immunosuppressants so they don’t increase the risk of other diseases. [41:50] Patients need biopsies to get therapy. [42:13] Ryan reminds listeners about the trans-nasal endoscopy podcast episode and the episode on the string test, which don’t require sedation. [43:06] Dr. Bansal notes that in trials, benralizumab failed as a treatment for EoE. It brought down the eosinophil count but it didn’t treat the patient’s dysphagia symptoms. Some specialists are wondering if there’s more to EoE than just the eosinophils. [44:30] Mepolizumab also reduces eosinophils. It is not known if it is effective against EoE. Tezepelumab is undergoing EoE trials now. It reduces eosinophils in the first two weeks. The data is not out on its effectiveness as an EoE treatment. [44:51] At EOS Connection 2024, Dr. Bluestein gave a great talk on eosinophilic asthma, including information about biologic treatments. More information is coming out about them and their trials for other eosinophilic diseases. [45:27] Dr. Bansal talks about how great it is to have new biologic options for people who tried an elimination diet, PPIs, and budesonide without relief from dysphagia. There was a void in the space, which is what dupilumab filled. [46:27] Allergists think that at least 70% of EoE patients have at least one other atopic disease, such as eczema, allergic rhinitis, polyps, or asthma. In pollen season some patients’ EoE gets worse. [47:11] Dr. Bansal tells patients she doesn’t want them dripping and draining into the esophagus. She doesn’t want them to add inflammation where there is already inflammation. So she treats their allergies. [47:44] After a dilation, a patient may feel cured. It’s just a stopgap; they’ll be back if they don’t treat their EoE. Dr. Bansal hopes that allergists treat any allergies as well as the EoE, so the allergies don’t have a negative impact on the EoE. [49:41] There’s no harm in getting an evaluation and seeing if there is something you could be doing to minimize the overall disease impact on your body and keep you healthier overall. Inflammation anywhere is never a good thing. [50:41] Ryan and Holly thank Dr. Bansal for joining the podcast today. [51:01] Dr. Bansal’s last word: “I would advise parents to trust your instincts. If you think that something’s wrong, even if somebody’s telling you it’s not wrong, get to the right people. Some insurances allow you to make an allergist appointment without a referral.” [52:18] If an allergist tells you there is a problem, know that they have years of experience with allergy patients. Dr. Bansal has hundreds of patients with EoE in the clinic. Create a partnership with an allergist. [53:12] If you would like to learn more about EoE, please visit . If you’re looking to find a specialist like Dr. Bansal, you can use APFED’s Specialist Finder at . [53:29] If you’d like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [53:39] Ryan thanks Dr. Bansal again for joining us on Real Talk: Eosinophilic Diseases. Dr. Bansal thanks Ryan and Holly. Holly would like to clone Dr. Bansal with all her enthusiasm. Holly also thanks Education Partners, Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode. Mentioned in This Episode: Video: Video: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “We have other things that we’re working with. We’re trying to find biomarkers and other tests that are not as invasive but for right now, it’s the endoscopy with six biopsies; two proximal, two mid, and two distal.” — Dr. Priya Bansal “As we get more research and learn more and more about the disease state and the nuances and some of the things that we’re seeing, obviously then, the hope is that we could educate people.” — Dr. Priya Bansal “You’ve got to have your biopsies. I know everyone hates them, everyone hates the scope, it’s uncomfortable, it’s annoying. I get it, but you need it to get therapy.” — Dr. Priya Bansal
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New Findings from the EGID Partners Registry with Dr. Elizabeth Jensen
08/29/2024
New Findings from the EGID Partners Registry with Dr. Elizabeth Jensen
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, have a conversation about the latest findings from the EGID Partners Registry. In this episode, Ryan and Holly discuss with Dr. Elizabeth Jensen two studies drawn from data obtained by EGID Partners Registry questionnaires. One study focuses on extraintestinal pain experienced by patients living with EoE and other eosinophilic gastrointestinal disorders (EGIDs). The second study considers vitamin and iron deficiencies reported by patients living with EoE and other EGIDs. Dr. Jensen hints at connected research she would like to pursue next. Listen for more information about extraintestinal pain, vitamin deficiencies, EoE, and EGIDs. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:58] Ryan Piansky introduces the episode. He and co-host Holly Knotowicz will talk about the latest findings from the EGID Partners Registry. [1:28] Holly introduces Dr. Elizabeth Jensen, an Associate Professor at the Wake Forest School of Medicine and an Adjunct Professor in the Department of Medicine at the University of North Carolina at Chapel Hill. [1:58] Dr. Jensen has been working on research related to eosinophilic gastrointestinal diseases since she was in graduate school. [2:11] Dr. Jensen’s background is in maternal and child health. She was interested in how early life exposures alter colonization of the gut microbiome and how that can lead to immune dysregulation. [2:33] Dr. Jensen became interested in EoE and eosinophilic gastrointestinal diseases because her family members had been affected by these conditions and researchers knew next to nothing about the pathogenesis of these conditions. [2:52] Dr. Jensen’s early research explored early life exposures that relate to the development of eosinophilic gastrointestinal diseases. [3:02] That research paved the way for a variety of ongoing research studies in Denmark, the U.S., and through the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). [3:30] The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or multiple ones. [4:21] The registry is also for individuals who haven’t been diagnosed. The EGID Partners Registry gives a voice to individuals who are living with these conditions, in terms of directing where we go with research and asking patient-centered questions. [4:58] To participate in the registry, go to EGIDPartners.org and register. Once you have registered you will receive a link to a questionnaire. The questionnaire can seem long. [5:23] After the first questionnaire, the registry sometimes asks for updates to your baseline information and asks new questions that have been suggested by others. [5:45] The EGID Partners Registry has a Scientific Advisory Committee, and patient advocacy groups, including APFED, physicians, and researchers, who direct where to go with the rich data that has been collected. [6:07] Some of the questions are specific and asked by registry members with individual interests. Some of the questions are directed by input received by patient advocacy groups. [6:48] After collecting these data, EGID Partners analyzes them and disseminates them by presenting them at meetings to get information to providers and individuals affected by these conditions. [7:50] EGID Partners Registry did a study titled “Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases” and published a poster on it. They explored joint pain, leg pain, and headaches, to see if they were related to an eosinophilic condition. [8:29] They studied pain severity and frequency as well as migraines. A high proportion of individuals reported pain. They studied those with EoE only and those with another EGID, including eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis. [9:06] The second group included individuals with or without EoE. In general, patients who have one of these non-EoE EGIDS, with or without EoE, tend to experience more frequent pain and more severe pain. [9:30] They’ve also seen that result in looking at other comorbidities. It reinforces the idea that patients who have multi-segmental EGIDs, or one of these lower EGIDS, tend to experience, on average, more severe extraintestinal symptoms. [10:39] The three areas of pain highlighted on the poster were legs, joints, and headaches. This was based on feedback from patients saying, “This is what we’re experiencing, is it something that you could look into?” [10:48] It doesn’t preclude the possibility that there may be other types of extraintestinal manifestations that we should be looking at in the future. [11:27] This study by the EGID Partners Registry feels very impactful to Dr. Jensen. It brings awareness to some of the challenges that individuals with these conditions are experiencing. Holly points out it’s a way for patients to get access to experts. [12:20] In this study, the EGID Partners Registry also looked at what proportion of individuals were taking either over-the-counter pain management medications or prescription medication. [12:39] About the migraine headache pain, most of it was over-the-counter use, although some reported prescription medication. [12:54] Ryan grew up experiencing leg pain all the time. He attributed it to his other chronic disorders. It wasn’t until some years ago at an APFED conference that he heard a physician mention leg pain. Ryan had never considered it as an EoE symptom. [13:38] One of the challenges the EGID Partners Registry has is that they don’t have enough individuals registered to start dividing the sample up further, by age. Roughly two-thirds of the respondents were adults. [14:12] It’s also hard to get kids to report accurately what they are experiencing. It often comes down to the caregiver reporting it to the EGID Partners Registry, which brings its challenges. [14:34] Ryan calls all patients listening to sign up with the EGID Partners Registry to allow the registry to get to some of these deeper questions. [14:47] Dr. Jensen adds that people often want to understand why these pains are connected to EGIDs. EGID Partners Registry doesn’t know why. [15:02] There are underlying biological processes that could potentially contribute to this observation of the increased prevalence of extraintestinal pain manifestations. In the EGID population, there is the enrichment of connective tissue disorders and more. [15:36] There is also evidence that there are increased comorbidities associated with a more inflammatory milieu. That could contribute to these extraintestinal manifestations of pain. [15:55] Dr. Jensen hopes to bring greater awareness to patients and providers, honoring what the patient is experiencing and digging a little deeper to understand what may be going on for this patient. [16:17] EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs. They looked at those who had been diagnosed with EoE alone and those who had another EGID, with or without EoE. [16:47] In this study, unlike with the pain manifestation, they didn’t see a statistically significant difference between EoE alone and the other EGIDs. There was some higher proportion in those with the lower EGIDs, but it didn’t reach statistical significance. [17:16] They saw a high proportion reporting physician-diagnosed vitamin deficiency, mainly Vitamin D and a few others. That suggests the need to screen patients for vitamin deficiency with a new diagnosis and when monitoring response to therapy. [18:28] There are reasons why there could be vitamin deficiencies. You may have a restrictive diet or be avoiding certain foods because you know they are going to bother you, or for the lower EGIDs, it may be that you’re experiencing malabsorption. [19:04] Holly plans to send this study to the people she is working with. She will ask them to read it, and then work to get a baseline. [19:56] A patient could ask for this test from any provider. Dr. Jensen says if it helps them to bring the evidence from these papers, that’s great; she hopes this empowers patients when they talk with their providers about the care that makes sense for them. [20:41] EGID Partners Registry compared those reporting a deficiency between those with EoE alone and those without EoE. Eighty-two percent of those with EoE reported a Vitamin D deficiency. About a fourth of each group reported a B12 deficiency. [21:27] Iron was another deficiency reported by 55% in the EoE group and 69% in the Non-EoE EGID group. Vitamins D and B12, and Iron were the top deficiencies reported. Many of the respondents reported they were taking vitamins or dietary supplements. [22:32] Dr. Jensen thinks a nice follow-up study to this would be to learn the proportion of respondents taking vitamin injections or infusions because of malabsorption issues with oral supplements. [22:37] Dr. Jensen thinks this study likely reflects an under-ascertainment of vitamin deficiency. A lot of patients aren’t getting screened. We don’t have the data yet because it’s not a universal recommendation to screen for vitamin deficiencies. [23:01] Dr. Jensen thinks awareness and increased screening will be key. Then we can start thinking about how we mitigate this. [23:24] Patients did not report symptoms of vitamin deficiencies. Dr. Jensen thinks that’s another good follow-up question. She stresses that it’s important to screen for deficiencies whether or not symptoms of deficiencies are present. [24:06] Holly considers her patients with various symptoms of vitamin deficiencies and wants to get on the website and ask questions. Dr. Jensen tells her there is a link on the registry site where you can suggest a question. She asks Holly to suggest a question! [24:30] Patients were asked if they have ever had a vitamin deficiency and were also asked if they currently take vitamins or supplements. A vitamin pill is one type of supplement. [25:10] The study also looked at the use of a variety of complementary and alternative medicine approaches that patients turn to because they’re not getting adequate relief from traditional approaches to addressing their conditions. [25:34] They saw a higher proportion of individuals with non-EoE EGIDs reporting the use of these kinds of alternative treatment approaches. Roughly a fourth of non-EoE EGID patients reported the use of a chiropractor, vs. 10% of EoE patients. [26:11] Roughly one-fourth of non-EoE EGID patients reported turning to different herbal approaches in trying to get some relief for their conditions. [26:49] Dr. Jensen says as a researcher, whenever she does a study, she is led to more questions. All of the research so far has opened the door to many more questions, including questions about individuals who don’t have either EoE or another EGID. [27:20] Dr, Jensen wonders, is this extraintestinal pain unique to those who have EoE and non-EoE EGIDs? How do we best mitigate this? What does the workup look like for the patient coming in with joint pain or leg pain? [27:37] How can we understand the factors that contribute to this pain? How do we get providers thinking about screening for vitamin deficiencies so we have a better understanding of their prevalence in this patient population? [28:04] If patients are not absorbing vitamins orally, How do we mitigate this? How do we optimize their nutrition so they are not dealing with vitamin deficiencies which can lead to other consequences down the road? [28:24] The surprises are always, “What doors are getting opened as a result?” We’ve answered some questions but there are so many questions that we still need to answer. [28:56] Ryan asks if a correlation was found in these studies between vitamin deficiencies and extraintestinal pain. He notices that missing his vitamins correlates with more leg pain. Dr. Jensen asks Ryan to go onto the website and pose that question! [29:10] Dr. Jensen has not looked at the data in that way but she thinks it would be an interesting way to bring these two studies together and try to explain some of what they are observing. [29:21] Holly thanks Dr. Jensen for sharing her expertise and this fascinating research to help all EGID patients have less painful and better quality lives. [29:52] Dr. Jensen makes this request. “Please consider checking out the website, joining, learning more about how you can contribute to this research, and introducing questions.” [30:04] “We’re always looking for new questions and are excited to think about how we can partner with patients in addressing questions that matter to them. Help us continue to answer some of these critical questions.” [30:32] One topic Dr Jensen is interested in researching is the implications for reproductive health for having these conditions. Some research in another data source suggests potential implications. [30:54] EGID Partners Registry observed and reported this year that there may be some indication of a longer time to pregnancy and a lower proportion of EGID patients experiencing a pregnancy. They want to look at that and understand it better. [31:12] They want to understand it with more detail than they can get from the administrative data source with the initial questionnaire. EGID Partners Registry is pushing out a reproductive health history questionnaire now. [31:29] EGID Partners Registry needs individuals to join and respond to the reproductive health questionnaire to help them understand this more deeply and some of the findings they are seeing initially in some of these other data sources. [31:49] Ryan encourages listeners to learn more about Dr. Jensen’s research and EGID Partners Registry by visiting . To learn more about eosinophilic gastrointestinal disorders, visit . [32:13] To find a specialist in eosinophilic disorders, use APFED’s Specialist Finder at . To connect with others impacted by eosinophilic diseases, join APFED’s online community on the Inspired network at . [32:31] Ryan thanks Dr. Jensen for joining us on Real Talk. Dr. Jensen thanks Ryan and Holly for having her on the podcast to talk about this research. Holly also thanks Education Partners, GSK, Sanofi, and Regeneron for supporting this episode. Mentioned in This Episode: Dr. Associate Professor at Adjunct Professor in the APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , and . Tweetables: “The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or with multiple ones.” — Dr. Elizabeth Jensen “The EGID Partners Registry studied extraintestinal pain severity and frequency and migraines. There was a high proportion of individuals reporting experiencing pain.” — Dr. Elizabeth Jensen “EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs.” — Dr. Elizabeth Jensen “Is this unique to EoE and non-EoE EGIDs? … How do we best mitigate this for the patient who is coming in with joint pain or leg pain? What does the workup look like for those patients?” — Dr. Elizabeth Jensen “The surprises are always, ‘What doors are getting opened as a result?’ We’ve answered some questions but there are so many questions that we still need to answer.” — Dr. Elizabeth Jensen
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Live from EOS Connection 2024, Ryan Piansky and Mary Jo Strobel
07/29/2024
Live from EOS Connection 2024, Ryan Piansky and Mary Jo Strobel
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED’s Executive Director, have a conversation about EOS Connection 2024, live at the conference. In this episode, Ryan and Mary Jo discuss highlights of EOS Connection 2024 including Ryan receiving the Founder’s Award with his friend Zach, meeting many new patients and their families, and speaking with the wonderful researchers and presenters. They discuss the status of EoE as a rare disease, and how the awareness of many eosinophilic disorders is spreading. Ryan shares some of his childhood memories of the EOS Connection conference and how great it is to see so many young patients participating in the kids and teen program. Ryan and Mary Jo discuss conference session highlights, including multidisciplinary care teams, the transition from pediatric to adult care, and coping with chronic illness. They invite you to register to watch recordings of the conferenc, which will be available until the end of 2024. Listen in for more information about the EOS Connection 2024 conference. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Ryan Piansky introduces the episode. He and co-host Mary Jo Strobel are live from EOS Connection 2024, APFED’s annual patient education conference. [1:14] Mary Jo Strobel is happy to join Ryan for a wrap-up of key highlights and congratulates Ryan on receiving the Founder’s Award. It was a joy for Mary Jo to present the award to Ryan. [1:38] It was a nice surprise for Ryan. Beth, one of the founders, gave a lovely speech about Ryan and Zach, the other award recipient. Ryan has known Zach for 20-plus years and they are life-long friends. They’ve known Beth for just as long. It was perfect. [2:23] Ryan’s highlights of this year’s conference were going down memory lane looking at the photos in the award presentation, meeting a lot of new patients and families, talking about experiences, and speaking with the wonderful researchers and speakers. [3:13] Mary Jo appreciated how the speakers delivered their messages in a way that was easy to understand. It was great to have them involved in the conference. [3:27] Mary Jo found it interesting when Dr. Spergel said on Friday that EoE may not be considered a rare disease for much longer and he raised the question: Is prevalence rising or are more people being diagnosed from better awareness around EoE? [3:57] Ryan also says it’s interesting to hear. APFED doesn’t want to be necessary. Ideally, everyone can see their pediatrician, get the diagnosis early, and get treatment early, not only for EoE but for everything else. [4:16] So many children come to APFED now, diagnosed early and on treatment options. On the adult side, so many people are coming to APFED saying they’ve lived with symptoms for years, not knowing what it was, and now have a diagnosis. [4:51] While EoE is becoming more common, there are the rarer eosinophilic subsets to talk about, HES (hypereosinophilic syndrome), eosinophilic fasciitis, and EGPA (eosinophilic granulomatosis with polyangiitis). [5:50] Dr. Amy Klion joined the conference virtually but attended the reception onsite. She is crucial to some of the rare eosinophilic disease research projects. [5:59] Mary Jo found Friday’s conversation with Drs. Sauer and McGowan about the management of EoE patients to be intriguing, in particular, when it was recognized that the GI and allergist might not always agree on approaches to treatment. [6:09] There was a lot of excitement around less-invasive diagnosistics. Mary Jo says it was fun to see the videos of Drs. Sauer and McGowan trying the string test. [6:25] Ryan has not yet tried the string test. It was fun for him to see that video of the two doctors trying it. The two doctors also shared their experience trying a six-food elimination diet. It was wonderful to have both doctors at the conference. [6:47] Holly Knotowicz could not join the podcast today but she and Ryan have talked before on the podcast about the importance of multidisciplinary care teams and how crucial they can be. [6:57] It was wonderful to hear from the doctors that they are working on multidisciplinary care teams on the pediatric side, through the transition process, and onto the adult side. Ryan hopes they can create a roadmap for other facilities to follow. [7:13] In the string test, the doctors both gagged at the end, but they made it through and both said their patients do a better job going through it with a straight face! The string test is now available at multiple U.S. sites. [7:42] For Mary Jo, it was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having. A robotics team came on site. There was a fun Family Feud-style game. [8:11] Ryan says the activities were absolutely crucial for him growing up. It was one of his favorite parts of the conference, coming back year after year, being with his friends again in an environment where he was able to feel so normal and among peers. [8:29] Ryan says you can lead a pretty normal life with EoE or other eosinophilic disorders, but it’s not something your school peers can relate to. Coming to the conference is so impactful. Ryan heard multiple kids say, “Wow, you’re just like me!” [8:46] For Ryan, it’s amazing that the conference can offer that environment for everybody. Ryan says it’s wonderful to have the teen program with so many volunteers to help. Ryan met Zach in a kids and teen program and now he helps run them. [9:13] Many incredible volunteers came to help; Ryan mentions some by name. It’s wonderful that the conferences have been able to create such a tight-knit community for these patients. [9:24] Mary Jo appreciated the volunteers doing the kids and teen programming this year for the conference and Amelia coming on-site as well. [9:38] Mary Jo liked the talk on coping with chronic illness and Dr. Kichline’s advice that you may not be able to change the situation but you can change how you react to it. It’s important for children to learn and adults to remember; you are not your disease. [10:06] Ryan remembers that point being emphasized when he was young. Thanks to APFED, we have a mentality here that you’re a kid first and then you also have to deal with allergies, medicines, and doctors’ appointments. [10:18] We want to make sure that you can enjoy school, enjoy your childhood, go out, hang out with friends, and be who you want to be without having to have EoE at the forefront of your identity. [10:32] That goes for all the other eosinophilic disorders and into adulthood. Those who were diagnosed 20 years ago are entering the workplace and figuring out how to be an adult with EoE. We have our lives first and part of that is managing this chronic illness. [10:55] Ryan says it was wonderful that they were able to talk to the disability lawyer. Part of the management of chronic illness is making sure that you can be an adult or a kid and have financial support through something like SSI or employer-based disability. [11:20] Mary Jo comments on the terrific presentations on the virtual day. It was great to hear from Dr. Fussner about EGPA. That tied in well with the new EGPA Toolkit that APFED launched this week in collaboration with the Vasculitis Foundation. [11:47] You can find the new EGPA Toolkit at . [11:59] Ryan thinks it’s exciting that the conference highlighted some of the more rare eosinophilic disease subsets. On the virtual day, presenters talked about EGPA, HES, eosinophilic asthma, and eosinophilic fasciitis. [12:12] Eosinophilic fasciitis is so rare. Two people were chatting in private messages beside a presentation that they had never talked to someone else with eosinophilic fasciitis. Ryan also saw there were multiple HES patients in person this year. [12:30] Ryan states that it is exciting to see patients even with these rare disease subsets being able to come together and hear about the latest research. [12:37] Mary Jo answers that’s why we call it EOS Connection! Ryan agrees; we’re making those patient connections even among these rare subsets. [12:47] Mary Jo had a fantastic time at the conference. She learned a lot and she hopes Ryan and everybody watching did, as well. [12:57] If you did not participate in the live events, Mary Jo and Ryan encourage you to visit and register to access the virtual conference to watch the recordings and explore the virtual poster hall and exhibit hall, through the end of 2024. [13:21] Ryan thanks our for supporting this event. It was wonderful to have so many people here; he hopes everyone was able to enjoy the virtual event. Mentioned in This Episode: APFED on , , , , Tweetables: “It was so wonderful to hear from doctors working on multidisciplinary care teams on the pediatric side, through the whole transition process, and onto the adult side. I hope they can create a roadmap for other facilities.” — Ryan Piansky “It was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having.” — Mary Jo Strobel “We have the new EGPA toolkit resource that we launched this week in collaboration with the Vasculitis Foundation. You can find that resource on APFED.org.” — Mary Jo Strobel “It’s exciting that we were able to highlight some of these more rare disease subsets. In the virtual format, where we’re able to reach so many more people, we talked about EGPA, HES, eosinophilic asthma, and even eosinophilic fasciitis.” — Ryan Piansky
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Artificial Intelligence and Patient Education
06/26/2024
Artificial Intelligence and Patient Education
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, have a conversation about artificial intelligence (AI) and patient education, with guest Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania. In this episode, Ryan, Holly, and Dr. Ketchem discuss Dr. Ketchem’s interests, and his research into using an AI chatbot to provide patient education on eosinophilic gastrointestinal diseases. He shares, in broad terms, the methodology and conclusion of the research and what current and future research he is pursuing about using artificial intelligence to improve patient education and care. Listen to this episode to learn about the current limitations and potential future benefits of using AI to help patients. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [1:17] Ryan Piansky and co-host Holly Knotowicz introduce the topic, artificial intelligence and patient education, and their guest, Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania. [1:30] Dr. Corey Ketchem has an interest in allergic inflammation of the gastrointestinal tract, particularly eosinophilic gastrointestinal diseases (EGIDs), as well as artificial intelligence and epidemiologic studies. [2:01] Dr. Ketchem did his residency at the University of Pennsylvania following medical school. There he met Dr. Evan Dellon, a world expert in EoE. Dr. Dellon became a mentor to Dr. Ketchem. [2:24] As Dr. Ketchem learned more about EoE, he was fascinated by the many unknowns and opportunities for discovery within the eosinophilic GI field. He wanted to make an impact on patient care. [2:51] Under Dr. Dellon’s mentorship, he did epidemiologic studies. Seeking specialized training, he ended up at the University of Pennsylvania where he is getting rigorous training in epidemiology to study EGIDs. [3:18] As ChatGPT was gaining its buzz, Dr. Ketchem saw a lot of clinical applicability. He views AI as an asset in epidemiology and hopes to use it to accelerate his research. [4:30] AI usually references using computers to mimic human abilities, estimate decisions, or predict outcomes. An example is Natural Language Processing (NLP), to analyze and understand human language. Large Language Models (LLM) use NLP. [5:08] ChatGPT is based on a LLM. LLMs use NLP techniques to understand vast amounts of text that they are trained on and generate responses in a chat format. [5:25] Machine learning is another subset of AI that uses statistical techniques to give computers the ability to learn with the data and predict outcomes. [5:50] The hope is to use these AI techniques to speed up discovery and also minimize human expense or labor. [6:28] Dr. Ketchem co-authored a paper in Clinical Gastroenterology and Hepatology about an AI chatbot and EoE. He had been inspired by a cardiology paper on whether ChatGPT would create accurate, appropriate answers about cardiology disease health. [7:19] Dr. Ketchem wondered if ChatGPT could be applied to EoE education. He discussed it with Dr. Dellon and Dr. Krystle Lynch, Dr. Ketchem’s mentor at the University of Pennsylvania, and with Dr. Joy Chang, at the University of Michigan. They came up with a study design. [8:06] The study asked ChatGPT questions about EoE, focusing on patient education and the therapeutics, and seeing if it gave accurate responses or not. [8:45] The four doctors developed 40 questions that they gave ChatGPT as prompts and evaluated the responses. They proposed the questions in two ways: each question in an individual chat and 40 questions in a single chat. [9:41] Analyzing the responses, the study demonstrated that ChatGPT responded with multiple inaccuracies to questions about EoE on general topics, complications, and management. Over half of the responses mixed correct and incorrect information. [10:09] To evaluate the readability of the responses, the doctors used the Flesch-Kincaid reading ease tool. To understand the output from ChatGPT one would need high school and two years of college. That poses a potential health literacy barrier. [11:40] The questions ranged from general: “What is eosinophilic esophagitis?”, to complications: “What is a food impaction?”, “What is a stricture?”, to therapeutics: “What are steroids for eosinophilic esophagitis?”, “Can I use a proton pump inhibitor for EoE?” [12:15] It was not clear where ChatGPT pulled data from to respond to the questions. The data it was trained on was known to be in texts over a year old. Newer data may not have been accessible to ChatGPT. [13:29] The doctors asked about things that were common knowledge in the eosinophilic GI realm, like dupilumab, and ChatGPT didn’t know much about it because it was a newer treatment option for EoE at the time of the study. [13:42] The doctors scored the answers on their scientific accuracy and patient educational value. Simple questions got good responses. For questions about therapies and complications, “it wasn’t doing well.” They identified limitations to the study. [14:14] The doctors asked ChatGPT if EoE is associated with cancer. From their best epidemiologic knowledge, the doctors don’t think that it is. ChatGPT falsely associated EoE with esophageal adenocarcinoma. [14:34] ChatGPT also associated EoE with Barrett’s esophagus. To the doctors’ best epidemiologic data, they are not sure that there’s a connection. [15:02] When the doctors asked the questions in individual chats, they asked ChatGPT for medical literature references for the information. It didn’t provide accurate references. Titles and authors were often incorrect and links often didn’t work. [15:36] The incorrect references were a signal that ChatGPT wasn’t ready to answer complex medical questions. In the more updated versions of ChatGPT, instead of giving references, it says you should consult your doctor, which is the right thing to do. [15:56] The researchers concluded that implementing this technology requires clinical oversight; it’s a tool that should be used with caution for patients in educating themselves and also from the perspective of a physician who is not an expert in EoE. [16:29] Dr. Ketchem had been surprised by how long the responses were. He was expecting paragraphs but got pages and pages. He was also surprised by how quickly people were starting to use ChatGPT in other aspects of gastroenterology. [16:57] While Dr. Ketchem and his team were writing the paper, another study came out about gastroesophageal reflux (GERD) that was somewhat similar to what Dr. Ketchem proposed for EoE. There is rapidly much being published about ChatGPT. [17:14] Although the results were imperfect, there is potential applicability in patient-facing chats in the future for patient education but not yet there “for prime time.” [18:33] These chats need to be transparent about where they’re getting data, especially in the medical field. [18:41] There will always be a role for people in medicine. You can't replace a face-to-face connection with a nurse or a physician with a chat bot. [19:11] Dr. Ketchem says everyone needs to be careful about using AI tools. He advises patients to always discuss any medical questions with their physician. AI tools are not yet able to provide accurate medical information all the time. [19:50] Ryan reminds listeners that this podcast is for educational purposes. Always consult your physician before making any changes to your healthcare. If you ask ChatGPT, also consult with your doctor before making any changes to your healthcare. [20:31] One of the problems with large language models is the potential for inaccuracy. Dr. Ketchem’s gold standard is the medical literature and you don’t know where the large language models are getting their information. [21:04] Future benefits may include helping patients get answers quicker and becoming more educated. Dr. Ketchem hopes we will get to a point where we can trust these technologies and implement them safely. [21:37] Government organizations like the National Institutes of Health (NIH) and the U.S. Food & Drug Administration (FDA) are bringing together experts to think about large language models and create regulatory frameworks for their use in healthcare. Dr. Ketchem tells how HIPAA (Health Insurance Portability and Accountability Act) rules are followed to protect patients. [23:29] Dr. Ketchem sees potential in machine learning to predict which therapies an EoE patient will respond to. AI is also used in colonoscopies to identify hard-to-see polyps. It might be useful in endoscopies to see changes in the esophagus from EoE. [24:35] AI image recognition could also be applied in pathology. Dr. Ketchem is interested in trying to apply it to work he wants to do in the long term. People are working with pathology specimens to automate the counting of eosinophils. Dr. Ketchem discusses the potential use of AI for epidemiology in pathology. [25:43] Dr. Ketchem and Holly discuss the potential for using AI chatbots in medical screening questionnaires. There will always need to be a human element. [27:57] Dr Ketchem speaks to the potential future development of educational videos prepared by AI. It is a complex scenario that would require a lot of training. If a camera is added, AI could analyze where patients are having problems in taking medications. [29:55] Dr. Ketchem says there are many moving parts in healthcare and many stakeholders, making it difficult to implement AI. It could be used in many aspects, but its use must be safe. Dr. Ketchem thinks it will soon be useful in medical imaging. [30:57] In the next decade, AI may be used in drug discovery, clinical decision-making, and healthcare administrative operations. The goal is to improve the care for the patient. Personalized care would be an aspirational goal of using artificial intelligence. [31:29] Dr. Ketchem heard of a computer scientist at a government meeting suggesting a far-future scenario of doctors having digital versions of patients to test the patient’s reaction to a specific medication, based on comorbidities and other medications in use. [32:30] Holly thanks Dr. Ketchem for sharing his research findings to help others. [32:40] Dr. Ketchem’s last words: “The future is bright. There are many open avenues to apply these technologies to eosinophilic GI diseases – in diagnostic support, personalizing treatment, and predictive modeling – to make patient care better.” [33:10] Dr Ketchem is building a research program to use epidemiologic training with artificial intelligence. He hopes to find how to take text from histology or pathology and apply epidemiologic methods, to build a cohort of patients to study diseases faster. [34:03] Dr. Ketchem hopes to use AI to help predict patient outcomes, regarding who will respond to what therapy and who will have more complications from their disease; those are things he is interested in. There are so many unanswered questions. [34:30] After Dr. Ketchem finishes his fellowship, he hopes to be an independent investigator, being curious and answering these questions somewhere. If you know of such a job, please let Dr. Ketchem know! [34:53] To learn more about Dr. Ketchem’s research, please check out the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, visit apfed.org/egids. If you’re looking for a specialist who treats eosinophilic disorders, use APFED’s Specialist Finder at apfed.org/specialist. [35:17] To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at apfed.org/connections. [35:26] Ryan thanks Dr. Corey Ketchem for joining us today. Holly thanks APFED’s Education Partners, GSK, Sanofi, and Regeneron, linked below, for supporting this episode. Mentioned in This Episode: Abstract of paper in Clinical Gastroenterology and Hepatology: Medscape article about the paper in Clinical Gastroenterology and Hepatology: , by Carolyn Crist APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , and . Tweetables: “We ultimately came to the conclusion that implementing this technology requires clinical oversight and it’s a tool that should be used with caution.” — Corey Ketchem, M.D., M.S. “There will always be a role for people in medicine. You can’t replace a face-to-face connection with a chat. That’s just not going to work.” — Corey Ketchem, M.D., M.S. “There will always need to be a human element to it. The goal is to make [AI for healthcare] as good as it can be. We’re certainly not there yet, but it’s probably closer to being here than we think.” — Corey Ketchem, M.D., M.S. Bio: Dr. Corey J. Ketchem, MD is a rising third-year gastroenterology fellow at the University of Pennsylvania, driven by a profound interest in allergic inflammation of the gastrointestinal tract, particularly eosinophilic gastrointestinal diseases (EGIDs). He has acquired a unique skillset in clinical epidemiology and biostatistics that equip him with the necessary tools to conduct rigorous research studies, culminating in a Master of Science in Clinical Epidemiology (MSCE) upon fellowship completion. Dr. Ketchem's passion for EGIDs has spurred a series of epidemiologic investigations focusing on both eosinophilic esophagitis (EoE) and non-esophageal EGIDs, yielding numerous publications in high-quality gastroenterology journals and earning him recognition through various research awards. Moreover, his academic path has included the incorporation of artificial intelligence into his research endeavors, aiming to enhance patient care and facilitate epidemiologic studies. Dr. Ketchem's trajectory is set toward becoming an independent researcher, dedicated to employing high-quality epidemiologic approaches to uncover pivotal insights into EGIDs, advance clinical knowledge, and optimize therapeutic strategies for patients. Bio:
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Food-induced Immediate Response and Eosinophilic Esophagitis
05/30/2024
Food-induced Immediate Response and Eosinophilic Esophagitis
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about food-induced immediate response in eosinophilic esophagitis (EoE), with guest Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine, and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. In this episode, Ryan, Holly, and Dr. Nirmala Gonsalves discuss food-induced immediate response in EoE, recent and ongoing research into FIRE, and advice for providers. Listen to this episode to learn about food-induced immediate response (FIRE). Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today’s episode, food-induced immediate response in eosinophilic esophagitis, and their guest, Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine. [1:38] Dr. Gonsalves is the Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. Her research and clinical career are dedicated to improving the care of patients with eosinophilic gastrointestinal diseases, or EGIDs. [1:53] Dr. Gonsalves’s extensive clinical experiences with EGIDs have shaped her research goals, which include identifying novel treatments and determining the best methods to measure disease activity. [2:20] Dr. Nirmala Gonsalves has been at Northwestern for 25 years and has been involved in the EGID and EoE space for the last 20 years. Dr. Gonsalves met Ryan during her first introduction to APFED when Ryan was “much, much younger,” so she is pleased to see him co-hosting this podcast. [2:56] Within Northwestern Medicine, Dr. Gonsalves is part of the Esophageal Group. Within the Esophageal Group, she co-directs the Eosinophilic GI Disorders Program with Dr. Ikuo Hirano. Working in the EGID space for the last 20 years has been incredibly rewarding. [3:11] Dr. Gonsalves feels lucky to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS) and the Consortium of Eosinophilic and Gastrointestinal Disease Researchers (CEGIR). [3:26] Dr. Gonsalves has focused her clinical career on understanding eosinophilic GI disorders, helping to get better diagnoses, increased awareness, and better treatments, and improving the quality of life for patients with these conditions. [4:19] Dr. Gonsalves describes the study of food-induced immediate response in eosinophilic esophagitis (FIRE). In 2017, gastroenterologist Dr. Alex Straumann, and allergist Dr. Mark Holbreich, both very familiar with EGID, started a multi-center effort and project, working with many physicians and patients to define this condition of FIRE. [4:45] The symptoms of FIRE are very different from what we typically think about as EoE symptoms. The classic symptoms of EoE in adults are dysphagia (difficulty swallowing), or food impaction (a bolus of food stuck in the esophagus). [5:37] This team of researchers in Switzerland, Northwestern, Indiana, North Carolina, Colorado, and Mt. Sinai, to name a few centers, noticed patients describing different symptoms; a more immediate response that was happening in their esophagus when they were exposed to certain specific foods, like beer or wine and avocado or banana. [6:19] Patients described an immediate reaction in their esophagus, occurring any time from seconds to minutes after ingesting that food, as a painful, squeezing sensation, and a narrowing in their esophagus that was temporally related to these foods. [6:42] It started to increase the researchers' awareness that this symptom was different from the classic dysphagia that adults and older children typically present with. [7:12] In the study, they did a two-phased investigation. First, they sent a survey to physicians used to treating EoE, to understand what their experience was about these symptoms. Based on that knowledge, they convened twice to develop a questionnaire for patients, to understand how common this is in the patient population. [7:38] The response was 47 physicians (an 82% response rate). They sent the patient survey to the EoE Swiss cohort and the response was 239 patients (a 65% response rate.) [7:58] Of the physicians, 90% reported patients reporting these symptoms. The physicians estimated this to occur in 5 to 20% of EoE patients. Looking at the patients who had FIRE with EoE, vs. EoE without FIRE, the FIRE patients were younger and more likely to have other atopic conditions like rhinitis, asthma, and dermatitis. [8:42] Patients with FIRE were more likely to have had a prior food impaction, a longer duration of disease, and a longer time to symptom presentation. Those were the risk factors in the patients. [8:56] In the patient questionnaire, 40% of the EoE patients surveyed reported that they had symptoms of FIRE. [9:29] Most of the patients in the study were adult patients. Looking at the average age of the EoE cohort vs. the EoE with FIRE cohort, the EoE with FIRE patients tended to be younger. Dr. Gonsalves suspects that patients are experiencing FIRE earlier on, but they don’t know what is occurring. [9:56] Dr. Gonsalves thinks that is where the investigation is going: to understand when FIRE is happening. The symptoms are quite different than the typical first EoE symptom when something is going down slower or getting caught in the esophagus. [10:27] As far as whether FIRE is experienced by other patients besides EoE patients, the survey team only noticed FIRE in EoE patients. A follow-up study could look at the control cohort or the regular reflux cohort. Patients don’t express these types of symptoms, other than EoE patients, so it seems unique to EoE patients. [10:53] When the team talked about and tried to understand more about the background of FIRE, and the risk factors, they wondered if it was similar to oral pollen syndrome, with a more immediate reaction in the esophagus. [11:49] With adults, certain liquors, wines, beers, avocados, and bananas stand out among triggers. The symptoms are so significant that patients would say on a scale of one to ten, it’s a seven intensity. It’s fairly immediate, within seconds to minutes, with a duration of minutes to several hours. [12:18] A lot of times, patients compensate by not eating those specific foods because they don’t want that condition to happen. For some patients, it’s a profound spasm-type squeezing in their chest that will occur when this happens. [13:44] Dr. Gonsalves says many patients will confuse FIRE with an anaphylactic reaction; it’s not clear what it is. The multidisciplinary group of physicians that worked on this study included allergists and gastroenterologists all tried to come up with the mechanism that causes FIRE. It does not appear to be an anaphylactic reaction. [14:13] When FIRE occurs, the doctors of the multidisciplinary group ask their patients to seek care from their allergist and discuss this with their allergist, to get more testing and understanding of what’s occurring. They want to be mindful if there’s any risk of anaphylaxis, but it does not appear that the FIRE condition is related to anaphylaxis. [14:55] Dr. Gonsalves says we’re at the very early stages of understanding the mechanisms of why FIRE is occurring. The first step was to increase awareness, define FIRE, understand it, and separate it from both EoE symptoms and anaphylaxis. We don’t yet understand the mechanisms. [15:18] At Northwestern, they are looking at a study to define FIRE better. They look to see if there is IgE sensitivity to these foods. If there are not, they look to see if there are any nanometric changes in the esophagus when these foods are in the esophagus. Are people having the esophageal spasms that equate to the symptoms they describe? [16:03] That study is to understand more about the mechanisms causing FIRE. What happens to the FIRE symptoms? Once a physician treats a patient with EoE, the FIRE gets better. Patients sometimes can reintroduce the foods when their EoE is quiet. There is a short window of time to identify FIRE in a patient before treatment. [16:43] Early identification and early treatment is the mantra. They don’t want to delay treatment in any patient. When the EoE goes in remission from treatment, the FIRE symptoms tend to go into remission, also. [17:01] This is unpublished data and research they are working on. Hopefully, they will learn more and be able to share it with APFED. These are their speculations. [18:17] At Northwestern, they are known for dietary therapy. Their patients gravitate toward diet therapy. The foods involved in FIRE symptoms are not big EoE triggers. In dietary therapy, when foods are reintroduced, patients describe recurrent dysphagia, heartburn, and EoE-type symptoms. [18:56] Patients having foods reintroduced don’t typically describe this immediate reaction where their esophagus is spasming, contracting, and feeling very tight right after. That’s a very different symptom. [19:17] For the patients studied, the foods most consistently triggering FIRE symptoms were fruits, wines, vegetables, honey, beers, and vinegar. The foods driving FIRE tend to be the foods driving oral allergy but the symptoms are different; no mouth, tongue, or lip itching, but a squeezing sensation in the esophagus. [20:29] Dr. Gonsalves says they have not identified long-term consequences of FIRE. They are very early in the stages of understanding and following it. The long-term consequences come from untreated EoE. Dr. Gonsalves lists some consequences of untreated EoE, including worsening scarring, strictures, and dysphagia. [21:08] Dr. Gonsalves speculates and wonders if physicians were sometimes confused between dysphagia, oral-pollen allergy symptoms, and FIRE symptoms, without it being clear what the patient was experiencing, leading to a delay in diagnosis. [21:52] Dr. Gonsalves says having patients with FIRE symptoms highlights the importance of having a multidisciplinary program and having a good collaboration with allergists, dieticians, and GI health psychologists to address food fear and anxiety, pathologists, and pediatricians. It’s important to have conversations with colleagues. [22:31] Dr. Gonsalves says there’s no test for FIRE, which is why we’re doing this research project; understanding what is behind FIRE, now that we know FIRE exists, we have a description, and we know how prevalent it is. We need to look at the patient and look for contractions of the esophagus upon exposure to the food with manometry. [23:18] Manometry is a tube with pressure sensors used for measuring esophageal pressure and the strength of contractions. Patients with EoE have various abnormalities in their esophageal contractions. To study FIRE, with the manometry tube in place, the patient will eat the trigger food or drink to see if there are heightened contractions. [25:24] Manometry is not an easy test. It is done when necessary to understand esophageal motility and function. It’s not easy to recruit for these tests and there are not many candidates as the symptoms go away quickly with treatment. The technicians are skilled in doing the testing. It’s done routinely and safely. [26:47] Dietary, pharmacological, steroidal, and biological treatments can be effective in treating EoE symptoms. When EoE symptoms stop, FIRE typically stops. There has not been a study to document this, but it has been observed clinically. After a patient has been treated and then is tested for esophageal motility, FIRE does not typically recur. [28:05] Dr. Gonsalves shares her suspicion that there is something related to esophageal inflammation that triggers this type of response and a hypercontractile state in that setting. Ryan reminds listeners that this podcast is not medical advice; always consult with your physician before making any changes or trying new treatment options. [29:40] When a provider talks to a patient, they might ask about dysphagia if they are making modifications for swallowing, and how they swallow something dry or dense. Can they perceive it going slowly down their esophagus? Are they taking in lots of liquid to help this food pass? Are they chewing excessively? Are they avoiding foods or pills? [30:40] These questions help providers understand if there is disease activity and if they are not symptomatic because of avoiding these types of foods. Those are EoE questions. [30:52] Asking about FIRE symptoms or oral pollen allergy symptoms, the provider will go down a list of allergic history questions about allergic rhinitis, asthma, eczema, and anaphylactic symptoms. Also, mouth itching, lip-tingling, or throat itching when they eat certain foods. [31:20] After they eat these foods, do they ever experience an immediate sensation of narrowing or tightening or spasm in the esophagus, or burning pain that happens secondary to the dysphagia? The important thing is to separate the transit dysphagia of things moving slower down the esophagus from this perception of squeezing pain. [32:18] Holly thanks Dr. Gonsalves for sharing her expertise to help others. [32:37] Dr. Gonsalves’s last word is that this condition exists. Providers, ask your patients about them. It was remarkable to Dr. Gonsalves how profound the symptoms were that patients described to the point where they avoided these foods and were scared of these foods. [32:56] Interestingly, FIRE is very different from EoE symptoms. It does exist. Ask about it! That will help tease out the reactions that are occurring. Especially, understand that when going on a food elimination diet, these are separate from the EoE triggers. [33:18] If you identify these symptoms, or oral pollen symptoms, or coexisting atopic conditions, partner with an allergist so that we understand the mechanisms behind this and make sure that nobody is at risk for anaphylaxis from these types of things. [33:49] Dr. Gonsalves is pleased to partner with TIGERS and to be on a site for the CEGIR Group. Dr. Gonsalves heads up the development of the Non-EoE Consensus Guidelines, to understand what goes into a diagnosis of Non-EoE EGID and what that entails. She continues to research dietary therapy and making it better for patients. [34:31] She works to understand different metrics to measure activity in the esophagus, histologically as well as motility-based, and the genetic changes that occur with different treatments, and doing all this, partnered with an amazing group of collaborators through the CEGIR Consortium and others to improve patients’ quality of life. [35:01] Dr. Gonsalves feels lucky that 20-something years ago, she bumped into the leaders of APFED and other patient advocacy groups and shared their experience with Northwestern. She is grateful for the privilege of working with all the wonderful physicians and patients who help us learn about these conditions. [35:46] To learn more about Dr. Gonsalves’s research, please check out the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, visit apfed.org/egids. If you’re looking for a specialist who treats eosinophilic disorders, use APFED’s specialist finder at apfed.org/specialist. [36:10] To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at apfed.org/connections. [36:21] Ryan thanks Dr. Nirmala Gonsalves for joining us today. Holly thanks APFED’s Education Partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode. Mentioned in This Episode: Publication discussed: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , , and . Tweetables: “Working in the EGID space for the last 20 years; it’s been incredibly rewarding. I’ve been lucky enough to be invited to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS).” — Nirmala Gonsalves, M.D. “Our patients will describe it; it’s a profound spasm-type squeezing in their chest that will occur when FIRE happens.” — Nirmala Gonsalves, M.D. “There’s no clear test yet for FIRE, which is why we’re doing this research project; really understanding what is behind FIRE, now that we know FIRE exists, we have a description of it and we know how prevalent it is.” — Nirmala Gonsalves, M.D. Bio: Dr. Gonsalves is a Professor of Medicine in the Division of Gastroenterology & Hepatology at Northwestern University Feinberg School of Medicine and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. She completed her undergraduate training at the University of Notre Dame, medical school at Robert Wood Johnson Medical School in New Jersey, and her internship, residency, and fellowship at Northwestern, where she has stayed on as an attending physician since 2005. In this role, she has co-authored more than 60 manuscripts and presented at more than 40 national or international meetings that focus on eosinophilic gastrointestinal diseases (EGIDs). Her research and clinical career is dedicated to improving the care of patients with these rare disorders. Her extensive clinical experiences with EGIDs have shaped the overarching research goals that include identifying novel treatments and determining the best methods to measure disease activity. She is a site investigator for the NIH-funded U54 Grant Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR, PI-Rothenberg) and Core Lead for the Northwestern Biorepository for an NIH sponsored PPG Grant on Esophageal Biomechanics (PI-Pandolfino).
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The Spoon Theory and Eosinophilic Disorders
04/30/2024
The Spoon Theory and Eosinophilic Disorders
Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about the Spoon Theory. In this episode, Ryan and Holly discuss the origin of the Spoon Theory, their experiences, and what the Spoon Theory means in their lives. Listen to this episode to learn how the Spoon Theory could work for you. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today’s episode, the Spoon Theory. Both Ryan and Holly will discuss their experiences. [1:39] About ten years ago, fatigue became a challenge for Holly. As she researched options for managing her fatigue, Holly came across the Spoon Theory, a tool she uses and teaches now in conferences and talks. [2:05] The Spoon Theory is a story written and copyrighted by Christine Miserandino in 2003 to help explain how chronic illness affects the amount of physical and or mental energy a person has available for daily activities and tasks and how it can be limited. [2:28] About a year ago, in a Community Conversations episode of APFED’s podcast, guest Ashley Spencer discussed EGPA. Ashley and Holly brought up the Spoon Theory. Ryan calls the Spoon Theory a digestible way to convey the effect of living with fatigue from chronic illness. [2:46] Holly shared how Christine Miserandino developed the Spoon Theory while at brunch with a friend. Her friend asked Christine how she was coping living with lupus. Christine grabbed all the spoons from the table and explained that each task throughout the day costs a spoon. [3:21] Christine asked her friend to walk through every activity of her morning. As her friend started talking about the different things she does, Christine would remove a spoon from her pile of 12 spoons. When dinnertime came, there was only one spoon. That limited her choices for dinner; this was long before dinner delivery services. [4:19] Through this exercise, Christine’s friend learned how chronic illnesses use up a lot of energy just from existing. For listeners who want to read more, please check out Christines’ website, ButYouDontLookSick.com, linked in the show notes. [4:33] Ryan sees the Spoon Theory as an easy way to convey what living with a chronic illness is like. He asks, why is it 12 spoons? Does everyone have the same number of spoons? In interviews, Christine has said 12 was the number of spoons on the table but it is a good representation of the limited supply people with chronic illnesses have. [5:07] According to the theory, healthy people have an “unlimited” supply of spoons, while people with chronic illnesses have to ration their spoons to get through the day. Everybody’s number is slightly different but the theory uses 12. [5:22] Ryan shared a story about seeing his sister during the holidays. She doesn’t have a chronic illness. She seems to have unlimited spoons for activities she plans, while Ryan may run out of spoons around 10:00 a.m. [5:46] Ryan asks if it is always the same number of spoons per day. Holly says your baseline number is about 12 spoons. It can vary if you borrowed spoons from the day before or if you have spoons left over from the day before. Some say on a good day, you might wake up with 20 spoons but a bad day would start with 12 spoons. [6:34] Holly explains about borrowing spoons. If you run out of spoons on one day, before you finish your activities, you might borrow spoons from the next day by canceling a planned activity for the next day. Holly also explains it to people as a lending library. [7:49] When Ryan was young, he attended the APFED patient education conference every year. He recommends it. His parents warned him not to overextend himself but to take it easy and rest during the day. At every conference, he just kept going for 12-plus hours. When he got home, he would crash for a day. He had used up all his spoons! [8:36] Ryan asks what happens when you run out of spoons. Holly shares that when you run out of spoons, your body might have a flare-up, or be more susceptible to getting sick because you’ve become rundown. [9:10] It can also lead to comparison with others and feeling sad or anxious because you don’t have the energy that healthy people around you have. For the average person with chronic illness, cooking from scratch from a recipe could be three or four spoons. [9:51] For someone with a specialized diet, that could double. You’re not just reading the recipe, you have to think about substitutions and go buy them. You have to know if the recipe will taste good with substitutions. It’s mentally exhausting to follow recipes for specialized diets. [11:04] Holly is an extrovert but sometimes being with people can take too many of her spoons, so she carefully plans her socializing. Being with good friends might take three spoons. Presenting at a conference takes more spoons. Walking a dog could take two spoons. Taking medication or brushing her teeth could take one spoon. [12:10] For children with chronic illness, going to school might take four of their spoons. Playing soccer might take five spoons, so at times they don’t have the energy. This can result in absences from school because they want to have typical social lives but don’t have the energy and reserves to do so. It’s the same for adults but it’s a hard fact for children. [12:53] Ryan was diagnosed with EoE at age two. Ryan thinks back to high school. He woke up at 6:15 every day to get to high school before 8:00. Getting to school on time probably took most of his spoons. The rest of the day was exhausting. He never did any extracurriculars in high school. By 3:00, he was down for the count. [13:50] If Ryan’s friends wanted to spontaneously do something after school, he often had to refuse. He needed a few days to prepare physically and mentally for extra activities. Having something sprung on him at the last minute drained more of his spoons. He would like to have had the Spoon Theory to explain it to his friends. [14:52] Holly says there is a mental aspect to having a chronic illness. You have to think about things in advance, especially people living with eosinophilic diseases and/or those who have specialized diets. To consider going out to a meal, you might have to research a restaurant in advance or even talk to the chef. Thinking about and making these phone calls requires spoons. [16:06] Recently Ryan planned to go out with friends. After they picked a restaurant and Ryan chose what he would order, the friends decided to try a different restaurant. Ryan had to check the menus of six other restaurants before they settled on the original one. The extra effort depleted Ryan’s energy and he just sat quietly during dinner. [19:14] Ryan didn’t push himself to be social because it would have eaten into his reserve spoons for the following day. As it was, he slept in the next day. [20:07] Ryan has had days where he has had to use up the next day’s spoons, and then had the next day be equally busy. [20:28] The Spoon Theory can be applied to different chronic illnesses. Most of them are invisible illnesses. It makes sense that Christine’s website is named ButYouDontLookSick.com. [21:29] Holly loves that the Spoon Theory provides a visual representation of how our energy works and how we can manage it. Because many chronic illnesses are invisible, people don’t always understand why we have to cancel, abort, or decline plans. We often have to prioritize activities to protect our health. It’s a different standard. [22:10] We prioritize activities to protect our health and how we feel. Holly uses the Spoon Theory to explain why she declines plans in advance when she has too many things scheduled. She wouldn’t be her best self. Holly rarely schedules anything for after an eight-hour workday. [22:55] Holly thinks of herself as a dynamic person who brings a lot to the table. She doesn’t want to be in an activity where she can’t participate fully. It reflects on how much her diagnosis seeps into her life. She doesn’t like to share her EoE with everybody, even though many people in her life know it and she does this podcast! [23:25] Over the last six months, Holly’s goal has been to map out her week to keep her energy consistent. She plans when to work out in the morning, when to see patients, and when to fly for international conferences. She gives herself a rest day after the flight or she stumbles and mumbles during the presentation. This means she often declines dinner invitations. [24:45] Holly will accept invitations to destination weddings but then will not book anything extra for a week afterward or she knows she will get sick. It’s a pattern. [25:28] Ryan says sometimes people can tell when he’s not at his best, but for the most part, he looks relatively healthy. He’s up and about, at meetings and conferences but it’s such a limited amount of energy that he has available. It’s hard for people with unlimited spoons to gauge how many spoons Ryan has left. [25:57] Holly often presents at medical conferences about feeding therapy, eosinophilic diseases, food allergies, FPIES, and tube feeding, and she incorporates the Spoon Theory into some of her talks. She has spoons at the podium and starts dropping them as she goes, holding one or none by the end. That’s when questions come. [27:25] Holly likes people to know that when they’re working with kids with chronic illness, it’s important to pace out their therapy. For example, give a patient two things to work on until the next time, not ten, to be successful. [28:50] Ryan clusters his multiple specialist annual visits at the start of the fall semester and at the beginning of the spring semester. That means he misses some classes and lectures at the beginning of each semester. It is draining. Tests eat up half his spoons for the day. [30:35] Holly shares how applying the Spoon Theory impacts managing her health. The Spoon Theory helps her create and maintain boundaries. She adamantly tries to stick to a schedule that rarely depletes her spoons per day. It’s still a work in progress. Holly has a therapist who is helping her work on it. [31:08] Holly schedules social things on days when she has little to no other obligations. She has to maintain that schedule. She has good days and sometimes great weeks which leads her to add more to her plate, but then she runs out of spoons more quickly because she’s borrowing from the next day. Eventually, she has no spoons to borrow. [31:42] Holly went on vacation for her birthday and then last week she was doing great, taking some urgent referrals for babies. This week, she had to cancel things. She is learning that she needs to schedule time to recharge and rest even on good days. [32:26] Holly has learned there are ways to increase your number of spoons. The most important things are to be compliant with treatment and follow a specific diet (if recommended). A lot of chronic illnesses have a specific researched diet to help you stay healthy. When you have a cheat day, you’re harming yourself by taking spoons from your next day. [33:31] Working out helps with anxiety and depression. There are physical and mental health benefits. Holly started tracking over the last eight months how many spoons working out earned for her, compared to the spoon it took from her. She finds that it adds three to five spoons to her daily reserve. The endorphins boost her energy. [34:14] Ryan agrees. He goes to the gym at least twice a week. If he misses a day, he feels worse. He goes out for a walk on days he’s not going to the gym just to get moving and he feels better after that. Being stuck inside all day is mentally draining as well. Going for a walk takes extra effort but it does feel better. [35:32] Ryan and his mother have similar food allergy issues so they both carefully stick to their diet. If they vary their diets on vacation, even without eating triggers or allergens, they feel physically bad for a few days until they get back to their usual diets. [36:28] Once Holly learned about this theory and was making new contracts, she realized that there may be times when she might have to cancel and reschedule. When she sends an email about an engagement, she includes an article on the Spoon Theory and describes what she is struggling with, in case she has to reschedule. [37:42] The Spoon Theory is a good way to describe to friends or family why the person with the chronic illness isn’t hosting the holiday but may need to go to a room and rest at the host’s home. It’s a tool to inform loved ones and friends so they can be supportive. It’s a different way to share our struggles with our chronic illness. [38:27] When Ryan meets people and tells them about his health issues, he might say he has food allergies but then also explain how his conditions lead to a limited supply of energy, and then tell about the Spoon Theory. It’s a helpful tool we can all use, going forward. [39:08] Our listeners can learn more about the Spoon Theory by going to Christine Miserandino’s website, ButYouDontLookSick.com. [39:47] To learn more about eosinophilic disorders, visit APFED.org. If you’re looking for a specialist who treats eosinophilic disorders, use APFED’s specialist finder at APFED.org/Specialist. [40:05] To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at APFED.org/Connections. [40:14] Ryan thanks Holly for sharing information about the Spoon Theory. It means a lot to Holly that we have a platform to reach a lot of people. Holly hopes if you are struggling with a chronic illness that you are not alone and you can use this tool to bring your loved ones and friends closer. Maybe weed out the people who aren’t helping. [41:15] Holly thanks APFED’s education partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode. [41:26] Ryan shares how he just met his partner’s friend and by discussing symptoms while picking a place to eat, it turns out she was diagnosed last year with EoE. It’s unusual for him to meet people with EoE out there randomly. Ryan is glad to be creating this resource for people. Holly agrees 1,000%. Mentioned in This Episode: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , , and . Tweetables: “Approximately 10 years ago, fatigue became a real challenge for me and as I researched options on how to manage fatigue, I came across the spoon theory, which is what we’re going to specifically discuss today.” — Holly Knotowicz “[The Spoon Theory] is such an interesting story and it feels like such an easy way to convey what living with a chronic illness is like.” — Ryan Piansky “We all have people in our lives whom we love dearly, but they could maybe be taking too many of our spoons, so you have to be thoughtful about when you plan time with them.” — Holly Knotowicz
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Gastro Girl and GI Diseases: Conversation With Jacqueline Gaulin
03/29/2024
Gastro Girl and GI Diseases: Conversation With Jacqueline Gaulin
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Jacqueline Gaulin, the Founder of Gastro Girl, a source of information for people living with various gastrointestinal disorders. In this episode, Ryan and Holly interview Jacqueline Gaulin about her career, how she started Gastro Girl, its podcast, and the partnership between Gastro Girl, the American College of Gastroenterology, and GI on Demand. Listen in for more information about this empowering resource for GI patients and their families. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:51] Ryan Piansky and co-host Holly Knotowicz welcome Jacqueline Gaulin, Founder of Gastro Girl, a patient-centered company that focuses on empowering individuals living with digestive health conditions through evidence-based information, resources, and access to GI experts to help people make informed healthcare decisions. [1:42] Holly thanks Jqcqueline for having APFED’s Executive Director, Mary Jo Strobel, as a guest on the Gastro Girl Podcast last fall. There is a link in the show notes. [2:07] Jacqueline started Gastro Girl as a blog, in 2007/2008 while working for a startup, trying to do great things for healthcare. She was charged with the Digestive Health channel. They needed content on living with disease and empowering patients. She created a persona, Gastro Girl, and started a blog around her. [2:41] Gastro Girl became a popular part of the site. The company was bought but Jacqueline retained the URL, Gastro Girl, and the persona. She engaged on Twitter and then got a job at the American College of Gastroenterology (ACG) where she dug into GI and learned the pain points from both the provider and patient sides. [3:09] Jacqueline saw that patients didn’t have the resources, access, and champions they needed so she created a company out of Gastro Girl to meet their needs. In 2019, Gastro Girl partnered with ACG to create a provider-focused platform, GI On Demand, that provides ACG members and their patients access to multi-disciplinary GI expertise. [4:02] Ryan tells about his experiences with APFED as a person living with Eosinophilic Esophagitis and Eosinophilic Asthma. His family is passionate about the patient experience for people with eosinophilic disorders. Ryan sees that Jacqueline is also passionate about empowering patients. [4:39] Jacqueline loves that patients and their loved ones are involved in advocacy. There is no better voice than those who walk on that health path. Jacqueline, as a child, saw her grandmother needing laxatives to feel better. Jacqueline didn’t understand. Then Jacqueline got a dog with digestive problems that needed veterinary help. [5:51] Jacqueline was fascinated by the whole connection between the digestive system and our overall health. When she started Gastro Girl she was going through a lot of trauma and lost a lot of weight. She was diagnosed with irritable bowel syndrome (IBS). [6:48] Gastro Girl brings together resources and information that run the gamut of digestive-health-related topics. It has resources and partners, like APFED, that cover all the areas of GI and bring the pieces together to help patients find the information they need, when and how they need it. [7:21] Holly tells how she searched symptoms online, was able to find Gastro Girl, and did a deep dive to navigate many areas. Holly also tells how she saw herself in patients’ symptoms while she was helping in an EoE clinic before she was diagnosed with it. [8:38] Gastro Girl has baseline content on what eosinophilic gastrointestinal disorders are and how they are diagnosed. Then it points to expert partners like APFED to speak to eosinophilic disorder topics and support in-depth. Gastro Girl focuses on symptoms and identifying diseases earlier to get into care quicker. [9:25] The Gastro Girl podcast and YouTube channel have episodes on EoE. The comments that come in on the videos, like “EOE 101,” Jacqueline says are mind blowing. People say the videos help them identify what possibly could be going on and get them to seek care without alarming them. [10:34] Gastro Girl offers evidence-based information and resources so that people know they can come to the site and find sites like APFED and the ACG that are trusted and credible, that will not send them down a rabbit hole and confuse them. [12:07] A colleague of Jacqueline’s friend emailed Jacqueline with her young son’s symptoms. Jacqueline isn’t a doctor and can’t diagnose but the symptoms sounded like EoE. She recommended that the mother ask her son’s doctor if he could be tested. Two months later she heard he had eosinophilic asthma and EoE. [13:21] Jacqueline says the biggest message we could get out there is for patients to pay attention to credible resources. She cautions patients to be mindful and use discretion when going to the sites for their health information. Dr. Google is not great. Holly directs patients toward specific videos or episodes that offer the best information. [14:41] There are some times when Jacqueline does not approve a comment to a podcast or video if she is concerned the comment will do more damage than good. She urges listeners and viewers to exercise caution on what comments they listen to. [16:22] Jacqueline has interviewed many patients, caregivers, and providers in the GI space. She says patients want to be heard and feel that they are being listened to and that they’re getting access to the right information so they can feel better. That can mean different things to different patients in their quality of life. [17:47] Gastro Girl is about putting the patient at the center. Being patient-centric is seeing the patient’s view first. Gastro Girl supports patients having collaborative care and shared decision-making, giving information so they are more educated and informed as they ask questions and collaborate on decisions with their providers. [19:25] Thinking critically and asking the right questions makes you an active participant in your healthcare journey, and hopefully, gets you to a better result. [20:26] Jacqueline learns every day from her podcast guests. She has learned that healthcare providers, gastroenterologists, dieticians, and psychologists care about their patients. They want patients to get better. Their passion and caring are overwhelming. [21:20] Jacqueline has learned that patients are resilient and committed, not only to finding better ways to have a better quality of life but also to advocacy efforts, helping, and lifting their fellow patients. Jacqueline says together we are much stronger than to be isolated by ourselves, dealing with big healthcare issues. [22:55] Many doctors are involved in research, speaking, webinars, and educating fellow providers and patients. It’s mind blowing to Jacqueline! [23:16] Running Gastro Girl and GI on Demand during COVID-19 was hard and stressful for Jacqueline. She was inactive and gained weight. She worried about taking care of others, but not herself. She is back on track, exercising and losing weight. [26:08] Jacqueline says we have to be kind to ourselves; we have to have compassion and grace towards ourselves. We’re very kind and compassionate to others and give them grace. Make sure you extend grace to yourself. [26:27] Jacqueline cites Tara Cousineau, author of The Kindness Cure. Positive reinforcement is better than beating yourself up. When you feel good, you’re going to do the good things next time. [27:46] Jacqueline tells about GI on Demand. It’s provider-focused with multiple disciplines available for healthcare providers. Providers and patients can search for dieticians, GI psychologists, and genetic testing and counseling. This helps GI providers and their practices to help their patients better. [31:24] Jacqueline plans for Gastro Girl to continue to do great work for patients. She is working on an educational bus tour, “Gastro Girl to the Rescue Bus Tour!” with partners such as APFED, to bring information to individuals at home. Patients can be guided to resources, like getting a proper diagnosis or finding a provider. It’s a lot of logistics! [32:56] To check out Gastro Girl’s website, visit GastroGirl.com. To learn more about eosinophilic disorders check out the resources there and also visit APFED.org. If you’re looking for a specialist who treats eosinophilic disorders, you can use APFED’s Specialist Finder at APFED.org/Specialist. [33:21] If you’d like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at APFED.org/Connections. [33:30] Ryan and Holly thank Jacqueline Gaulin again for joining them. Ryan would be happy to go on the Gastro Girl podcast any time to talk more! Holly thanks APFED’s education partners, linked below, for supporting this episode. Mentioned in This Episode: Special Guest Mary Jo Strobel APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “I love when patients get involved in advocacy because there’s no better voice for the patient than those who walk in that path, whatever their health condition or journey is, or even if they have a loved one.” — Jacqueline Gaulin “What Gastro Girl really offers is evidence-based information and resources so that people know that they can come to our site and find sites like APFED and the ACG that are trusted and credible.” — Jacqueline Gaulin “The biggest message we could get out there is for patients to pay attention to the credible resources. I just caution patients to be mindful and use discretion when going to the sites for your health information.” — Jacqueline Gaulin “To think critically and to ask the right questions will get you, hopefully, a better result in your healthcare journey because you’re not just a passive participant, you’re actively playing an important role in your healthcare with your provider.” — Jacqueline Gaulin About Jacqueline Gaulin An early champion of a patient-centric, collaborative, and multidisciplinary approach to gastrointestinal health, I worked for several early-stage health-related start-ups, including Revolution Health. During my time with the American College of Gastroenterology (ACG), I led the ACG into the digital age by creating and executing strategic communications plans and patient education campaigns around a variety of digestive health topics and related research, including IBS, IBD, Liver disease and colorectal cancer awareness. After six years with the ACG, my passion for empowering patients inspired me to evolve my popular blog, Gastro Girl, into a digital health company in 2015, Gastro Girl, Inc., to provide patients with access to the GI expertise and evidence-based information and resources they need to follow their doctor’s treatment plan and make informed health care decisions with their care team for better health outcomes.
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The Family Risk of Eosinophilic Gastrointestinal Diseases
02/29/2024
The Family Risk of Eosinophilic Gastrointestinal Diseases
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Mary Jo Strobel, APFED’s Executive Director, speak with Dr. Kathryn Peterson, MD, MSCI, a Professor of Gastroenterology at the University of Utah Health. In this episode, Ryan and Mary Jo interview Dr. Peterson about the family risk of eosinophilic gastrointestinal diseases, discussing the studies she has done, future work she is planning, and other studies of related topics. She shares that she is a parent to a patient living with an eosinophilic disorder. She hints at future research that may lead to easier diagnosis of EGIDs. Listen in for more information on Dr. Peterson’s work. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Ryan Piansky welcomes co-host Mary Jo Strobel. Mary Jo introduces Dr. Kathryn Peterson, a Professor of Gastroenterology at the University of Utah Health. Dr. Peterson specializes in diagnosing and treating diseases of the digestive system including eosinophilic esophagitis (EoE), Barrett’s esophagus, and inflammatory bowel disease. [2:00] Dr. Peterson works at the University of Utah in Salt Lake City. She co-directs an eosinophilic gastrointestinal disease clinic with Dr. Amiko Uchida. They also work closely with allergy, nutrition, and pharmacy in the clinic and are looking for additional ancillary services to come into the clinic. [2:27] Dr. Peterson takes care of all sorts of eosinophilic gastrointestinal diseases. She works closely with Dr. Gerald Gleich, as well. Dr. Peterson is a mother of a boy living with eosinophilic disease for 10 years, so she experiences both sides of eosinophilic diseases. She loves her job. [3:23] Familial risk refers to the risk of the disease in a patient when a family member is affected, compared to the general population. Looking at a proband (patient), is a first-degree family member (parent, sibling, or child) also affected with eosinophilic disease? Is a second-degree family member (grandparent) affected? Are cousins? [3:58] Dr. Peterson’s is trying to see if and how far out the risk for the disease goes within a family. Based on that, you can get an idea if some shared genes are involved, vs. shared environmental influence of the disease within family members. That’s the idea of doing family risk studies in complex diseases; eosinophilic diseases are very complex. [4:44] Dr. Peterson explains how she conducts a family risk study in Utah. The Utah Population Database is very helpful. The University of Utah has partnered with The Church of Jesus Christ of Latter-day Saints for large genealogical pedigrees that allow tracking disease through expanded pedigrees, with privacy and security limitations. [5:24] It’s necessary to clarify physician coding to make sure it’s realistic and coded appropriately so that results are believable. It’s very hard to recruit family members. Dr. Peterson feels extremely blessed to live in that area. The families are generous and giving. She also believes all eosinophilic families are generous. [6:34] The farther out you can identify the risk for disease, the more likely you will find a common gene that could be implicated in disease risk or onset. If the disease is tracked in extended relatives, it implies a shared gene more than a shared environmental risk. If the disease is isolated within nuclear families, it may indicate an environmental risk. [7:39] In doing familial research, Dr. Peterson is trying to develop a risk score. People are getting pretty good at diagnosing EoE, but Dr. Peterson would not say that the non-EoE EGIDs are well-established or well-diagnosed. They are missed commonly and often. To have a risk score from the extent of the disease in a family is helpful. [8:12] Dr. Peterson notes that studies of cancer risk in extended families have established cancer risk scores and related screening that is needed. [8:43] Dr. Peterson coauthored a paper in November 2020 about the familial risk of EoE, published in the Clinical Gastroenterology and Hepatology Journal. She and her colleagues looked at nuclear families. They were looking for how many members of the nuclear family of an EoE patient have esophageal eosinophilia. [9:28] They used a questionnaire on allergies, food allergies, and symptoms. They pulled in around 70 first-degree family members and scoped them for eosinophilia, pulled the records on the rest of the family members if they had been scoped, and assessed the risk for eosinophilia. [9:51] Including the records, and assuming that everyone who hadn’t had an endoscopy was negative, they found the risk for esophageal eosinophilia in first-degree family members was 14%, bordering on the familial risk for celiac disease. It’s probably higher since they assumed anyone who hadn’t been scoped didn’t have eosinophilia. [10:19] They called it esophageal eosinophilia, because the guidelines for diagnosing EoE suggest that the patient must complain of symptoms, and these family members did not have symptoms. It was interesting to find this high prevalence of eosinophilia in the nuclear family members of EoE patients. They had a higher risk of allergy, as well. [11:14] Dr. Peterson explains the differences between esophageal eosinophilia and eosinophilic esophagitis (EoE). Esophageal eosinophilia means eosinophils are in the esophagus, >15 per high-power field in a biopsy. That could qualify as EoE when you go through the criteria of symptoms. [12:19] We call it esophageal eosinophilia while we rule out everything else that could cause that cell to get recruited into the esophagus. It could be an allergic reaction to a medication, larger eosinophilic disorders, or parasitic infections. Esophageal eosinophilia means you had that initial biopsy that puts you at risk for EoE. [13:06] You have to go down the diagnostic steps: Do I have symptoms? Do I have anything else that explains it? If you have nothing else that explains the eosinophils, and you have esophageal dysfunction, then you can call it EoE. [13:33] Dr. Peterson, speaking personally, believes that educating doctors to ask patients about EoE symptoms would be useful in diagnosing EoE. People cope. You don’t want to focus on your symptoms because you want to be able to focus on your life. If symptoms aren’t brought to a doctor’s attention, a diagnosis can get missed. [16:47] Dr. Peterson discusses risks for EoE in families where allergies are present. Dr. Peterson is involved currently in another familial study to find more information about the risk of EoE where there are allergies in a family. In the preliminary data, it looks like there is a link with asthma. Asthma and EoE in a family seem to track together. [17:31] The risk of EoE seems to be higher with additional allergies within a family. Dr. Peterson says they are cleaning up the data to get a better answer. It appears that allergies in general go along with some of the genes that have been identified in EoE. Watch for Dr. Peterson’s papers going forward! [19:05] They looked at around 300 eosinophilic gastroenteritis (EGE) patients and about 170 eosinophilic colitis (EoC) patients. If you have a proband with EoE, is there a higher family risk of having EGE or EoC? It looks like EoE puts you at higher risk of these other conditions. But with such low numbers in the study, the jury is still out. [20:37] They looked at EGE codes because there is a subset of patients who have eosinophilic disease in their stomach and small bowel who don’t have EoE. They found that in patients who have eosinophilic disease in the stomach or the small bowel, EoE is still commonly seen throughout families. EoE seems to be a common theme. [21:54] Down the road, Dr. Peterson hopes to be able to identify enough families that they might be able to start looking at genes that might put people at risk for more extensive disease. [23:07] Dr. Peterson discusses the difficulty in diagnosing eosinophilic colitis, inflammatory bowel disorder, and other disorders. Having eosinophils does not categorize you as an EGID patient. There are other disorders where eosinophils are present. We need a better understanding of eosinophilic colitis. [25:21] Eosinophilic asthma and eosinophilic fasciitis are disorders that Dr. Peterson has not studied but are in the Institutional Review Board approved documentation for future study. [26:18] Dr. Peterson addresses whether your degree of risk for an EGID increases if you have an immediate family member with an EGID, vs. a second cousin with an EGID. She would say yes, based on the hazard ratios in the data and knowing that eosinophilic disorders are complex and twin studies show an environmental influence. [27:28] Dr. Peterson asks patients about their family history, especially when they have other symptoms besides EoE. It makes her more aware of what to test. [29:10] A paper Dr. Peterson is about to submit studied family members who weren't affected, who were siblings of probands. Their mucosa wasn’t entirely normal. They may be pre-diagnostic. These are patients who need to be followed. There may be things that set people up for the development of this disease, in the right environment. [31:04] Something fascinating from the familial study is the challenge of diagnosing EGIDs. Fifty percent of the people they brought in hadn’t had an endoscopy. We need to be proactive in identifying diseases in patients. In the study, there are a lot of general GI symptoms coded that Dr. Peterson wonders if they may be missed EGIDs. [32:34] The NIH gave Dr. Peterson’s team funding and they were able to do linkage analysis on several de-identified families that were at high risk for EGIDs. It looks like multiple genes have the potential to be involved. Personalizing medicine would be applicable if there were just one specific gene involved. [33:23] Down the road, we may find some genes that portend higher risk and other genes that portend risk where we can do preventative environmental care. We can develop risk scores to identify risks and point to interventions. [34:10] Mary Jo thanks Dr. Peterson for joining us today to share her expertise and help us learn and understand. [34:36] Future research needs to be done where we are able to recruit patients and do more work looking at genetic linkage and get to the point where we can diagnose and identify non-EoE EGIDs well enough to explore them more, including eosinophilic colitis. Defining those diseases is necessary and needed. [35:16] A lot of what Dr. Peterson is trying to do is to look further into combined diseases and hypereosinophilic states to determine if there is some gene within families that may help her to develop other therapies not focusing only on the GI tract but on a global approach to health for these patients. [35:48] There is current research being done to find less invasive ways of identifying disease, such as imaging, so people don’t have to undergo endoscopy. That research is being done on the commercial side. [36:44] Dr. Peterson has been looking at food-specific antibodies. Also, research by other doctors is being done to identify other markers of the foods that often trigger the disease. There has been some interesting preliminary data. This can help patients to eliminate fewer foods. [37:27] Dr. Peterson has been looking at less invasive ways to identify non-EoE EGIDs in ways that can avoid biopsy. [38:04] What’s being done to study Barrett’s esophagus? Dr. Peterson speaks of past and planned research, using the Utah population database. They looked at the risk for Barrett’s esophagus in patients with EoE and it was eight times higher than the normal population. Dr. Peterson correlates risks with reflux for Barrett’s and EoE. [39:26] There are still questions about which comes first, EoE, Barret’s esophagus, or reflux. She also talks about the relationship between achalasia, allergic diseases, and EoE. [41:05] To learn more about Dr. Peterson’s research, please see the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, please visit . [41:29] To find a specialist, visit . To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [41:48] Ryan and Mary Jo thank Dr. Kathryn Peterson again for joining them. Mary Jo thanks APFED’s education partners, linked below, for supporting this episode. Mentioned in This Episode: (to release February 2024) (published November 2020) APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “When we study familial risk, we’re looking at the risk of the disease in a patient when a family member is affected, compared to the general population.” — Dr. Kathryn Peterson “I think allergies, in general, kind of go along with some of the genes that have been identified in EoE.” — Dr. Kathryn Peterson “Fifty percent of the people we brought in [to this familial risk study] hadn’t had an endoscopy. We need to be proactive in identifying diseases in patients.” — Dr. Kathryn Peterson About Dr. Kathryn Peterson Kathryn Peterson, MD is a Professor of Gastroenterology at the University of Utah Health. She is certified by the American Board of Internal Medicine. Dr. Peterson specializes in diagnosing and treating diseases of the digestive system including eosinophilic esophagitis, Barrett’s esophagus, and inflammatory bowel disease. She completed her medical degree at the University of Texas Southwestern, followed by residency and a fellowship at the University of Utah and a master's program in Epidemiology at Harvard University. Bio: .
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Remodeling and Eosinophilic Esophagitis (EoE)
01/30/2024
Remodeling and Eosinophilic Esophagitis (EoE)
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Dr. Amanda Muir, an Assistant Professor of Pediatrics at the Children’s Hospital of Philadelphia. In this episode, Ryan and Holly interview Dr. Muir about tissue remodeling and eosinophilic esophagitis (EoE). Dr. Muir describes remodeling and stiffening, its effects, and how it relates to treatment and inflammation. Listen in for information on remodeling and a pediatric study Dr. Muir is planning. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:48] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. Holly introduces Dr. Amanda Muir, an Assistant Professor of Pediatrics at the Children’s Hospital of Philadelphia (CHOP). She has a translational lab that investigates esophageal remodeling in the setting of EoE. Holly thanks Dr. Muir for joining us today. [1:51] Dr. Muir became interested in eosinophilic disorders as a GI Fellow. There were so many patients with eosinophilic esophagitis and eosinophilic gastrointestinal diseases but there weren’t many good therapies and little was known about the long-term results for children. [2:24] Dr. Muir’s first eosinophilic interest was eosinophilic esophagitis. She joined a lab that was looking at how the esophagus changes over time in the setting of inflammation. After being in the lab, training, and learning all the skills and techniques, she was able to launch her career and lab. [2:46] Dr. Muir started her own EoE clinic at CHOP (Children’s Hospital of Philadelphia) as part of their Center for Pediatric Eosinophilic Disorders. She sees patients at the clinic, then she can bring questions from the clinic to the lab and talk about them as a group. [3:28] Dr. Muir explains esophageal remodeling. There is remodeling that happens in the epithelial compartment of the esophagus. Then there’s remodeling that happens underneath the surface in the lamina propria. For the most part, when people talk about remodeling in eosinophilic esophagitis, they refer to the remodeling happening below the surface. [3:50] There is a burgeoning field dedicated to studying the surface of the esophagus, and Dr. Muir is also very interested in that. For today’s purposes, we are talking about the remodeling that happens under the surface. [4:03] Eosinophils that get to the esophagus secrete chemicals that excite the cells below the surface to secrete collagen. Collagen is the glue that holds the body together. They’re secreting glue to help the esophagus hold together, and the esophagus gets stiffer and stiffer, over time. That is remodeling. It’s the body trying to heal itself. [5:04] Are children and adults equally at risk for remodeling? Patients develop a stiffening of the esophagus more, later in life. It is thought that the more years you have this inflammation, the more stiff your esophagus gets. There are patients six to nine years old who already have signs of stiffening. [5:28] Dr. Calies Menard-Katcher from Colorado published a paper where she described all of the eosinophilic esophagitis patients at her institution who got dilated. Dilation is the process of a balloon stretching your esophagus open when it’s too narrow. She had patients as young as six in her cohort that she described as having EoE strictures. [5:49] Remodeling happens with younger patients but we’re not as good at finding it. [6:08] Any type of inflammation in the GI tract can lead to some stiffening. The typical gastrointestinal disease that we think of as remodeling is Crohn’s Disease. An inflammatory process happens in the small bowel or colon that leads to narrowing and stiffness in the intestines. [6:28] Also GERD (reflux) can lead to stricture, over time. It is just much more rare to see a GERD-induced stricture as opposed to EoE. [7:13] We are not sure, but to some extent, we think of remodeling as not being reversible. Once there is a certain degree of stiffness, the esophagus does not seem to open up without these dilations. If you can control the inflammation, you can halt the stiffening. Maybe there is some degree of reversibility. [7:44] In the Phase 2 dupilumab trials, investigators found that patients on dupilumab were seen to gain two millimeters in diameter of the esophagus, compared to the patients on placebo. We may be able to prevent some remodeling if we catch it soon enough. More research is needed. [8:33] Dr. Muir tells of the work she is doing in her lab. They take biopsies from patients and grow collagen-secreting fibroblasts in a dish. The research is to find out what calms the fibroblasts down from actively secreting collagen. [9:22] It’s tough to follow the symptoms of EoE when patients only have difficulty swallowing foods that are hard to swallow. If patients are not challenging their esophagus, they might not notice having daily trouble swallowing. It’s hard to ask a young kid who is eating a lot of soft foods if they feel like anything’s getting stuck. [10:06] Dr. Muir will ask teenage patients, “Do you ever want to eat chicken? Do you ever want to eat steak?” A lot of times they don’t want to eat it, perhaps because it felt uncomfortable at some point in their life and they don’t want to eat it, not based on taste but on repeated bad events. It’s hard to tease out the symptoms, sometimes. [10:27] Dr. Muir says, based on our Functional Luminal Imaging Probe (FLIP) studies, patients who had feelings of food that felt stuck in the last 30 days did seem to have a more narrow caliber esophagus. There is not a 100% correlation between symptoms and remodeling, but there seems to be some correlation. [11:31] Ryan tells how patients have tendencies to get around their EoE symptoms, with a personal example of keeping food in his mouth and chewing it for a long time before swallowing. A scope would show he had bad inflammation of the esophagus. He had been diagnosed when young and was under treatment and on a restricted diet. [12:26] Biopsies don’t always get a sample below the surface to check for fibrotic cells so it is hard to find remodeling with biopsies. There are some visual signs. Seeing rings or trachealization in the esophagus, or narrowing, can be signs that there is some remodeling under the surface. [13:38] For kids who have a lot of trouble swallowing, Dr. Muir performs an EndoFLIP test regularly. The test catches subtle narrowing that may not be visible to the endoscopist. Doing this test gives the doctor more information and a better sense of the patient's phenotype, such as inflammation, the esophagus being stretchy, or being stiff. [14:49] The EndoFLIP is a balloon with an imaging probe that includes a TV for the doctor to see how many millimeters the esophagus is in diameter as the balloon inflates along the whole body of the esophagus. It’s not an imaging test that goes to radiology. It’s a balloon that is blown up slowly with salt water and that gives this measurement. [15:18] The EndoFLIP is a helpful tool to help determine who may have some more stiffening or determine exactly what the diameter of the esophagus is before starting treatment. [15:33] One of the things that Dr. Menard-Katcher of Colorado, Dr. Ackerman of the University of Illinois, and Dr. Muir collaborated on was to look and see if they could find any markers in the esophagus that would relate to some of the things that are obtainable on biopsy or the esophageal string test. [15:57] What they found was that periostin — a protein made by the epithelium and by the fibroblasts, which is known to activate fibroblasts, and is very high in EoE — seemed to correlate with the EndoFLIP measurements. This makes Dr. Muir think that there might be some potential for biomarkers to detect remodeling. [16:16] The thing that everyone wants for this disease is to find a biomarker where we don’t have to do a scope. As far as finding a non-invasive biomarker, we’re not there, yet. There are some things going on at the tissue level that might clue us in on how distensible the esophagus is. [17:18] The thing Dr. Muir worries about the most with long-term inflammation is that the esophagus is going to get more narrow over time. That will make patients more susceptible to food impaction (although not all patients with food impaction have a stricture). [17:36] One worry is that the esophagus will get so narrow that an endoscope will not be able to pass a stricture. That will lead to more swallowing problems. That is what Dr. Muir hopes to be able to prevent as we get better at treating this. [18:09] Any of the treatments that stop the inflammation and help get you below that “magical” 15 eosinophil count that we all strive for, will help prevent remodeling. So, once you get everything calm, hopefully, the remodeling process will stop. However, with the stiffening, the fibroblasts get more excited and have a hard time turning off. [18:53] Simply turning off the inflammation will not turn off the fibroblasts. Many people within the GI space are looking at fibroblast-directed therapy, especially in Crohn’s disease, there’s a real need to prevent a lot of surgeries that are happening. Dr. Muir hopes to apply some of these to the esophagus, as well. [19:16] In the study by Dr. Menard-Katcher, Dr. Ackerman, and Dr. Muir, there were 80 patients. Some were on swallowed steroid treatment and others were on an elimination diet. There were not enough patients on each therapy to find a significant difference in remodeling between the therapies. Patients in remission had better distensibility. [19:44] Dr. Evan Dellon showed in a paper that patients who have sustained remission have fewer dilations, in the long term. While we don’t have a way to reverse the fibrosis that’s happened, we hope to prevent it from getting any worse. Dr. Muir’s research goal is to find something to calm fibroblasts down and prevent fibrosis or even reverse it. [20:31] Dr. Muir explains that cells under the surface level are fibroblasts. When eosinophils and T cells come in and secrete antagonizing chemicals, the fibroblasts turn on and start secreting collagen. The fibroblasts also turn on when the epithelium is angry and inflamed. There is also evidence that surface cells can secrete collagen. [22:46] Dr. Muir says it’s hard to know how far along in development some anti-fibrotic drugs are. We have many promising targets. Understanding how the remodeling happens is very important to be able eventually to treat this disease. Even though it seems like incremental progress, Dr. Muir believes research is moving the field forward. [24:16] Dr. Muir says her EoE patients at CHOP are generous with their blood and tissue. Getting consenting control patients for lab studies involves a lot of leaps of faith and trust that scientists will grow your cells ethically. Dr. Muir feels lucky she has a good research team that explains things in lay terms to control patients. [26:50] Dr. Muir’s team has videotaped pediatric EoE patients and control patients’ eating. The time EoE patients spent chewing and how long it took to swallow correlated to their esophageal distensibility measured by the EndoFLIP test. She believes that how we feed and the difficulty we have swallowing have to do with esophageal remodeling. [27:41] That’s Dr. Muir’s next area of study. It’s being spearheaded by Dr. Kanak Kennedy, a fellow in Dr. Muir's lab, trying to figure out the relationship between pediatric feeding and remodeling. [28:08] As part of their research, they are videotaping as many kids eating as they can. This involves many control patients who don’t have EoE. Another area of research is on the enzyme lysyl oxidase which organizes collagen into bundles and makes it stiff. She is looking into ways to decrease the organization of the collagen. [29:08] Ryan thanks Dr. Amanda Muir for coming on the podcast and giving a crash course on remodeling and EoE. [29:14] To learn more about eosinophilic esophagitis, visit . To learn more about Dr. Muir’s research, read her . [29:30] To find a specialist, visit . To connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at . [29:47] Ryan and Holly thank Dr. Amanda Muir again for joining them. Holly thanks APFED’s education partners, linked below, for supporting this episode. Mentioned in This Episode: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “I was able to start my own EoE clinic at CHOP as part of their Center for Pediatric Eosinophilic Disorders. I see patients who have eosinophilic gastrointestinal diseases and then I can go back to the lab and bring those questions from my clinic to the lab.” — Dr. Amanda Muir “The thing that everyone wants for this disease is to find a biomarker where we don’t have to do a scope.” — Dr. Amanda Muir “Any of the treatments that stop the inflammation and help get you below that ‘magical’ 15 eosinophil count that we all strive for will help prevent remodeling. So, once you get everything calm, hopefully, the remodeling process will stop.” — Dr. Amanda Muir About Dr. Amanda Muir: Amanda B. Muir, MD, Attending Physician, Children’s Hospital of Philadelphia, Research Institute. Dr. Muir investigates the mechanisms underlying esophageal fibrosis to improve therapeutic and diagnostic approaches.
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Journey to an Eosinophilic Esophagitis (EoE) Diagnosis
12/22/2023
Journey to an Eosinophilic Esophagitis (EoE) Diagnosis
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Moises Velasquez-Manoff, a health and science writer living with EoE. He is a contributing writer for the New York Times Magazine. He writes about the human microbiome and its impact on health, as well as climate, COVID-19, and other health and science topics. In this episode, Ryan and Hollyinterview Moises Velasquez-Manoff about his and his search for help with his burning esophagus. They discuss his journey living with EoE, how he got diagnosed, and the treatments that help manage his symptoms. Moises speaks of various misdiagnoses he received that didn’t address his issues. After reflux was ruled out by a series of three tests, a biopsy during an endoscopy indicated EoE. Now on treatment, Moises is feeling much better. Listen in for a powerful story of a decades-long search for help. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. Holly introduces Moises Velasquez-Manoff, a health and science writer living with eosinophilic esophagitis (EoE). He recently wrote an article that was published in NY Times Magazine entitled, “The Mystery of My Burning Esophagus,” in which he documented his journey and diagnosis of EoE. [1:51] Eosinophilic esophagitis (EoE) is a rare chronic allergic inflammatory disease of the esophagus. It is part of a complex group of diseases known as eosinophilic gastrointestinal disorders or EGIDs. [2:05] Approximately one out of 2,000 people of all ages and ethnic backgrounds [in the U.S] are diagnosed with EoE, and people with EoE commonly have other allergic diseases, such as rhinitis, asthma, or eczema. [2:20] Moises has had asthma for as long as he can remember. It was worse when he was a child and he sort of grew out of it. In adulthood, it was exercise-induced asthma. He has been allergic to sesame and peanuts for his whole life. They make him vomit. He has had eczema, hay fever, and alopecia areata. [3:43] Moises has had problems with his esophagus since his 20s. He is 49 now and only got diagnosed with EoE about two years ago after his burning pain became very bad. It took about a year to rule out reflux, first by using high-dose proton pump inhibitors (PPIs). While on the medication, he still felt the horrible burning pain. He also had unusually bad side effects from the PPIs. [5:25] After eight weeks of PPIs, an endoscopy showed his symptoms were almost gone. Moises believed he had reflux, but he still had the burning. His gastroenterologist suggested an alternative diagnosis, esophageal hypersensitivity, a pain syndrome from years of inflammation. [8:21] Moises went to a second doctor who was an expert on EoE. They did a series of tests to rule out reflux. He did the Bravo PH test or reflux, a peristalsis test, a tube that was left in for 48 hours, and a barium swallow test. Each test was uncomfortable. These tests ruled out reflux. [12:11] The doctor then believed it was esophageal hypersensitivity. The treatment was Cymbalta, an anti-depressant that also dampens pain signals. Moises was able to start eating again and started putting on weight that he had lost. A year after he stopped taking the PPIs, an endoscopy gave him the diagnosis of EoE. [15:48] Reading Moises’s article triggered many memories and emotions for Holly. She experienced symptoms since she was a baby and saw around 13 specialists before she received a diagnosis of EoE in her early 20s. By that time her eosinophil levels were out of control and her esophagus was so rigid she needed several dilations. [18:01] Moises had seen a gastroenterologist for reflux years ago and then two more doctors to get his EoE diagnosis. It was extreme pain that influenced him to seek the diagnosis. He also saw an ENT about sinus headaches, and he believes they were related to his EoE. He finally went to a doctor that specializes in EoE, just in case. [23:08] Today, Moises manages his EoE with an off-label use of the asthma medicine budesonide taken twice a day. He mixes the solution into honey and drinks it, the honey helps the medicine stick to his esophagus. Moises worries about potential side effects as it is a steroid but at small doses. [25:32] Ryan has taken the systemic steroids hydrocortisone and prednisone, as topical steroids were not effective for him. He was also on a restricted diet throughout his childhood. The diets didn’t clear up his EoE; the only thing that helped was high-dose steroids until he began taking a biologic after being diagnosed with eosinophilic asthma. [28:56] The treatment Moises is taking for EoE is localized. There shouldn’t be any systemic effect. He believes if he took a biologic, he may see improvements in his other allergic conditions, such as eczema and his sinus condition. [27:17] When his esophageal burning feeling was at its worst, Moises felt like he was suffocating. Doctors couldn’t explain it to him, but a research scientist told him that sometimes problems in one internal organ, like the esophagus, can confuse the brain stem, so it reads the problem as coming from another organ, like the lungs or the heart. [29:23] What helped with Moises’s gasping attacks was the neuromodulating medicine, the anti-depressant, which changed how the nervous system perceives what’s happening, lowered the ability for pain signals to be transmitted, and calmed his nerves. [30:53] Ryan talks about drugs being prescribed off-label when there is anecdotal evidence that they can improve symptoms of other disorders. Some EoE patients use the asthma medicine budesonide as a topical treatment of the esophagus. It is mixed into a slurry with Splenda and swallowed. Dupilumab was originally approved to treat eczema and has recently been approved to treat EoE. [31:40] Ryan is on benralizumab, a biologic, for eosinophilic asthma but as a side effect, it has also been helping his EoE. He doesn’t need systemic steroids anymore for his EoE. After seeing positive benefits from the biologic, he weaned off the steroids. His parents, who are doctors and involved in APFED, helped him through the process. [34:40] Moises tells how he came to write the article for New York Times Magazine. While he was suffering, he was not considering writing about it. When he finally got his diagnosis and was feeling better, he read an article another science writer published about their journey with a pain condition and was inspired to help other people by writing about his own journey. His first draft was more intense than the finished piece. [37:09] Holly describes the article as very powerful. She felt she was going through it with Moises. She could feel what he was describing as he searched for answers. She appreciates him writing it. Moises says people have written to him from around the world that related to his story. [40:43] Some even asked Moises about where they could find an EoE specialists, and Ryan mentions APFED’s Specialist Finder. To find a specialist who treats eosinophilic disorders, go to . Also, please check out in these show notes. [41:19] As a science writer, Moises has written a lot about the microbiome and its relationship to allergic disease and autoimmune disease before he noticed that this was happening to him. He had written a book, , 11 years ago about the root cause of these debilitating disorders and why allergies are increasing. [42:51] Moises believes that the human microbiome has been impoverished by our modern environment and diets and that has led to an increased risk of allergic conditions. Moises gives the example of European farmers, who live in a rich microbial environment and have fewer allergic and autoimmune conditions. [44:39] Moises says the research also shows that antibiotics early in life increase the risk of asthma, EoE, inflammatory bowel disease, and colon cancer. The more you take, the greater your risk. They have done research with animals, knocking out key microbes and seeing an increase in these diseases. [45:33] H. Pylori is associated with ulcers and stomach cancer, but everyone used to have it, and it is common in the developing world. Research indicates that h. pylori changes how your immune system works. Unless you kill it with antibiotics, you have it for the rest of your life. If you have h. pylori, your EoE risk goes down. [46:32] If you are breastfed, that also reduces your risk of EoE. Breastfeeding is thought to cultivate a healthy colony of microbes in the infant’s gut. Moises credits the microbial deprivation hypothesis for the increase of allergies and autoimmune disorders. There won’t be a treatment for microbial deprivation anytime soon. [47:18] Holly and Ryan thank Moises Velasquez-Manoff for coming on the podcast and allowing them to interview him today about his patient experience and background. Moises thinks it’s crazy how much good evidence there is that EoE has increased in prevalence. Unpublished results show that EoE incidence is approaching 1 in 1,000. [48:45] To learn more about eosinophilic esophagitis, visit . To find a specialist, visit . Ryan recommends reading . To connect with others impacted by eosinophilic diseases, join APFED’s online community on the Inspire Network at . [49:13] Ryan and Holly thank Moises Velasquez-Manoff again for joining them and invite listeners to read . They close by thanking APFED’s education partners, linked below, for supporting this episode. Mentioned in This Episode: NYT Magazine article by Moises Velasquez-Manoff: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “I have had problems with my esophagus probably since my 20s but I only got diagnosed [with EoE] about two years ago after things started getting really bad.” — Moises Velasquez-Manoff “I could not tolerate the PPIs, even though they worked very well to lower my eosinophil counts. But I could not handle the side effects. So we moved to swallowed budesonide slurry. … an off-label treatment.” — Moises Velasquez-Manoff “Science takes a long time, sometimes.” — Moises Velasquez-Manoff About Moises Velasquez-Manoff Moises Velasquez-Manoff is a contributing writer for The New York Times Magazine and author of An Epidemic of Absence: A New Way Of Understanding Allergies And Autoimmune Diseases. He's written a lot about the human microbiome and its impact on health, as well as climate, COVID-19, and other health and science topics. He lives in California. Website: NYT Magazine article:
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Community Perspective: Eosinophilic Gastritis (EoG)
10/26/2023
Community Perspective: Eosinophilic Gastritis (EoG)
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Mary Jo Strobel, APFED’s Executive Director, speak with Dr. Jenny Huang, an allergy and immunology fellow at Scripps Clinic, who has a unique perspective of also living with eosinophilic gastritis (EoG). In this episode, Ryan and Mary Jo interview Dr. Jenny Huang about various EGIDs, her allergy and immunology fellowship, her EoG diagnosis, and the elimination diet she follows to treat her EoG. Dr. Huang speaks about patients she sees, and how her experience of following an elimination diet gives her passion for helping people and guiding them to a treatment plan that works for their lifestyle. She advises patients to ask their doctors lots of questions and tell all their family and friends about their condition so they can be supportive. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Co-host Ryan Piansky welcomes co-host Mary Jo Strobel. Mary Jo introduces Dr. Jenny Huang, an allergy and immunology fellow at Scripps Clinic living with eosinophilic gastritis (EoG). Dr. Huang is passionate about gastrointestinal disorders and spreading awareness about EGID. She recently published a commentary about her experiences. [2:20] Dr. Huang explains that eosinophilic gastrointestinal disorders (EGIDs) are diseases of the GI tract that result from eosinophils, a type of white blood cell causing inflammation. Depending on where the eosinophilic inflammation occurs, you can have different symptoms. [2:43] The role of the esophagus is to get food from the mouth to the stomach. When there is eosinophilic inflammation, you have eosinophilic esophagitis (EoE) that can cause difficulty swallowing or food getting stuck. If you have inflammation in the stomach, that is eosinophilic gastritis (EoG). This can cause abdominal pain or nausea. [3:31] Dr. Huang is an allergy and immunology fellow. She trained in internal medicine. Even in medical school, she knew she wanted to be an allergist. In her second and third years of residency, she began having symptoms that she thought were related to the stress of putting together her fellowship application while working in the hospital. [3:56] One day, Dr. Huang had a terrible episode of vomiting and she knew she needed to get medical advice rather than trying to treat herself. [4:17] Dr. Huang learned about EoG for the first time after she was being evaluated for it. During her residency, she had learned about EoE, but not other eosinophilic gastrointestinal disorders (EGIDs). Her allergist brought it up. Dr. Huang did a lot of reading and research after that. [4:48] Dr. Huang says there were times when she couldn’t finish breakfast because of so much nausea and abdominal pain. She started carrying around TumsⓇ, which was something she had never done. Those things made her realize that something was wrong. [5:11] Dr. Huang was treated by the assistant director of the allergy fellowship program where she is now training. She says he is one of the nicest, smartest people she knows. Dr. Huang had done her internal medicine residency in the same program, so she knew all of the allergists. Dr. Huang had no doubt the doctor would figure out her problem. [5:49] Dr. Huang remembers the day she had her appointment with him. The intake nurse seemed to recognize Dr. Huang from when she had done rotations in the office, but she couldn’t quite place her and didn’t ask. [6:19] Dr. Huang describes her difficulties in following the six-food elimination diet that she and her GI doctor decided were the best option for her to manage EoG. Deciding on a treatment plan is a personal decision that should fit the needs of the patient. Dr. Huang decided on the elimination diet with no idea how difficult it would be. [7:02] Dr. Huang went to the grocery store the same day and was overwhelmed trying to read all the labels. She had never really read nutritional labels before. She stopped going to a lot of restaurants because she had to ask so many questions before ordering. [7:27] Ryan shares childhood experiences of going from an elemental diet to a strict elimination diet. He relates to Dr Huang’s experiences at the grocery store and cooking. [8:15] When Dr. Huang first began the elimination diet, most of her allowed foods were fruits, vegetables, and meats. She was able to add back most foods within a year but the hardest food for her to avoid in the beginning was soy. Her favorite food is tofu. Soy was the first food she added back and she was so happy when she was okay. [8:44] When she started reading labels for her elimination diet, Dr. Huang learned that some soy sauce has wheat in it. So, she started buying soy sauce that doesn’t have wheat in it. [8:57] Dr. Huang did the elimination diet as an adult and found it incredibly difficult. She applauds Ryan for doing it as a child. Ryan is grateful to his parents for helping him navigate that along the way. [9:20] In Dr. Huang’s article, she recommended that providers try living on an elimination diet for a week. It’s challenging! She has not been able to convince anyone to try it. When she suggests it, the look on their face is telling! It’s so hard. If people don’t see a reason to do it, it’s just not done. [10:15] An anecdote from Dr. Huang’s article was about eating at the American College of Gastroenterology conference. She asked the waiter to help her find something free of milk, wheat, eggs, soy, seafood, and other ingredients she could not have. Ryan felt it was so relatable. Ryan was at a conference this summer where he could not eat. [11:13] Dr. Huang brings a lot of snacks with her when she travels. She sticks to brands that she knows are safe for her. She searches ahead of time for restaurants with allergen menus. At restaurants, she always shares what foods she is avoiding so they can help her with choices. [11:42] Mary Jo mentions that the APFED conferences provide appropriate menu choices for people on elimination diets. [12:17] Dr. Huang’s partner is a gastroenterologist specializing in esophageal diseases. He was in general GI fellowship training when Dr. Huang was diagnosed. He has been supportive of what Dr. Huang has been through with the diagnosis. He did the elimination diet with her, helped her cook, and supported her. [13:27] The elimination diet is the only way Dr. Huang has managed her EoG. She has had repeat endoscopies with biopsies and the diet has been working so far. She’s keeping her fingers crossed. [14:00] When Dr. Huang was first diagnosed, she wasn’t sure how bad her disease was or how much worse it would get and it frightened her. Fortunately, her symptoms have been controlled so it hasn’t impacted her career that much. But she feels like this diagnosis has given her a calling and a direction for her career. [14:33] Dr. Huang plans to study EGIDs. She has been doing EGID research studies during her fellowship. She wants to help people with it. She wants people to know that they’re not alone and even though we don’t have all the answers now, we will one day. [15:08] Dr. Huang gets excited when she sees that someone is coming in with EoE or EGIDs because she automatically feels a special connection to them. She spends a lot of time counseling on the diagnosis, making sure the treatment plan fits their lifestyle and is something the patient can realistically do. [15:29] Dr. Huang thinks back to when she would recommend dietary changes without understanding what that meant for the patient. Having gone through it, now she can better counsel patients. [16:38] Dr. Huang discusses quality of life issues of treatment with her patients. She explains how difficult an elimination diet is. Currently for EoE, the only FDA-approved treatment is dupilumab by injection. [18:02] Dr. Huang’s advice for those with a new diagnosis of EoG is to talk to your doctor and ask a lot of questions. Make follow-up in-person appointments. Make a list of all the questions you have and talk through it with your doctor. If you pursue an elimination diet, get with a dietician to help navigate that. It’s confusing in the beginning. [18:36] Patients, talk to your family and friends. They can help support you at medical appointments and procedures. They can call ahead to restaurants and make sure your dietary restrictions can be met there. They can accommodate your dietary restrictions at home. Don’t hide your diagnosis from the people around you. Hiding makes it more difficult. [19:05] Mary Jo thanks Dr. Jenny Huang for joining them to share her experience and ask for additional thoughts. [19:18] Dr. Huang wants people with EoG to know that they’re not alone. EoG is rare but it’s an increasingly recognized and diagnosed disease. It’s easy to feel alone when your doctor tells you that you have a rare disease. Someone else out there knows how you feel. [19:48] Ryan thanks Dr. Huang for sharing all of her experiences today. [19:51] To connect with others impacted by eosinophilic diseases, join APFED’s online community on the Inspire Network at . [20:04] To learn more about eosinophilic gastritis, visit . To find a specialist, visit . Ryan recommends reading Dr Huang’s article linked below. Ryan and Mary Jo thank Dr. Jenny Huang again for joining them and thank APFED’s education partners, linked below, for supporting this episode. Mentioned in This Episode: “” Commentary Published in Gastroenterology APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “If you have [eosinophilic] inflammation in the stomach, that is called eosinophilic gastritis or EoG. That can cause symptoms like abdominal pain or nausea.” — Dr. Jenny Huang “Deciding on a treatment plan is a personal choice and it needs to fit someone’s lifestyle and their individual needs. What’s right for one person may not be right for someone else.” — Dr. Jenny Huang “Did you know that soy sauce has wheat in it? I had no idea until I started reading all the labels. So, we started buying soy sauce that doesn’t have wheat in it!” — Dr. Jenny Huang “When I was first diagnosed, I wasn’t sure how bad my disease was or how bad it was going to get. I read a lot about the possible outcomes and it really scared me. … I couldn’t imagine what it would be like if my symptoms progressed.” — Dr. Jenny Huang About Dr. Jenny Huang Dr. Jenny Huang is an allergy and immunology fellow at Scripps Clinic. She is passionate about eosinophilic gastrointestinal disorders and has made it her mission to spread awareness about what it is like to live with EGID.
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Community Perspective: Eosinophilic Esophagitis
09/27/2023
Community Perspective: Eosinophilic Esophagitis
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE, who serves on APFED’s Health Sciences Advisory Council, talk with Declan, a teenager living with eosinophilic esophagitis. In this episode, Ryan and Holly interview Declan about his EoE diagnosis, his dietary restrictions, how he receives support from his parents and friends, and upcoming milestones such as transitioning clinical care to an adult provider and attending college. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. Holly introduces the guest, Declan, a teenager living with eosinophilic esophagitis (EoE). Declan is 16 years old and has been living with EoE since 2019. [1:38] Declan likes to hang out with friends, play video games, and play the cello. Declan has been living with EoE for about four years. In the beginning, his EoE was hard to handle, in part because it was new to him. [2:03] Eliminating milk because of his EoE was hard for Declan. Once he started the milk-free diet, he got his eosinophils to zero in his second endoscopy. [2:24] Before Declan was diagnosed, his weight was low, he was having trouble swallowing, both of which are signs of EoE. He was at risk of having a feeding tube when he was diagnosed, but is now able to manage his EoE with diet therapy. He feels much better now. His mom helped him find substitutes for things that he can’t eat. He enjoys the substitutes. [3:03] In 2018, Declan lost a lot of weight, had trouble swallowing, and felt like food was stuck in his throat. Losing weight didn’t worry him at first. When he started getting the feeling of food getting stuck in his throat, he became concerned and sought help. [3:39] Ryan was diagnosed when he was two, so he doesn’t remember much of it but his parents told him about it later. [4:10] Holly had symptoms her whole life but they were not recognized as EoE for many years. She put ketchup on all her food and drank a lot of milk to be able to swallow. Holly was diagnosed in her 20s at which point she needed an esophageal dilation. [4:49] Declan was about 12 when he was diagnosed after a period of weight loss and then swallowing issues. [5:12] Declan can’t have milk so his friends thought he was lactose-intolerant. He had to explain EoE to them. They eventually understood. [5:58] Declan has to read labels for the ingredients. If something has casein or whey, he cannot eat it. Eating at restaurants is challenging if they don’t have an allergen menu. He often researches foods online. Declan’s Mom helps him a lot through this journey. [7:20] Declan’s last bad reaction happened shortly after he was diagnosed. He was on a cruise ship with his family. There was so much food with milk on the ship and he decided to have some. After the cruise, he felt terrible, had difficulty swallowing, and food once again got stuck in his throat. Ever since then, he has remained milk free, except if he consumes it by accident. [8:08] If Declan accidentally has milk, he takes a steroid that opens his esophagus a little more and takes away the temporary inflammation. [8:33] Even as an adult, it is still hard for Holly to resist the cheesecake or the pizza with real cheese. She also can’t have milk due to her EoE. [9:15] Declan and his mom recently baked milk free chocolate cookies using vegan butter and almond milk. Declan’s mom has substitutes that she uses in all recipes. One of Declan’s favorites is a homemade dairy-free pizza. [9:52] Since Holly was diagnosed, many new dairy alternatives and substitutes have come onto the market. There are many brands of cheese and milk alternatives. [11:16] Declan takes a pill every night that helps with his acid reflux. [11:42] Ryan describes his journey in the transition of care process from pediatric patient to adult patient. He started by learning the medicines and dosages he was on and having a say in what foods he was eating and what foods he was avoiding. [12:15] At the beginning of Declan’s care, his mom did everything. She made the appointments and spoke to the doctor for Declan. Now Declan is preparing for his transition of care. He is more aware of what he can and can’t eat. He speaks for himself, describing his symptoms and what’s going on. [13:18] School lunches can be difficult for Declan. His mother researched the ingredients of all the foods served at his school. When going to social events, he brings something for himself to eat or just doesn’t eat. [14:35] Declan explains to his new friends what EoE is and why he has to avoid milk. He explains that it doesn’t give him anaphylaxis but does irritate his esophagus. Holly tells her new friends the same kinds of things and that she wants to keep her esophagus healthy. [16:03] If you are a friend of a person living with EoE, you can help by supporting them and being there for them if they need help. Make sure that you and your other friends are aware of what your friend can and cannot eat, especially when visiting their homes, so they can eat with you and other friends. [17:01] Holly shares a story about being very impressed when a friend of hers called ahead to a restaurant to make sure their menu included dairy-free, gluten-free, and soy-free foods she can eat. [17:30] Ryan shares an experience from over the summer going out to eat with friends of his. They remembered his triggers and called ahead to make sure there were safe options for him at a restaurant. [18:20] Declan plans to go to college and his first choice of major is architecture, or maybe chemistry or another science. When in college, Holly was unable to eat the cafeteria food. [19:33] Ryan had a similar experience. After talking with Disability Services and Food Services, it was determined that he needed an apartment with a kitchen to cook for himself. He shared the apartment with three roommates. [20:44] When selecting a college, Declan plans to check in with the cafeteria and see if they have anything he can eat. On a recent college visit, he found a lot of places with dairy-free options that he could eat. [21:27] When Holly was in college, her cooking space included only a microwave and a hot plate. She took a position as a nanny, to have access to a kitchen. Today, the world is becoming more aware of dietary restrictions and making better accommodations. [22:40] If Declan’s family takes a trip, they always research the area where they will be staying to find places where he can eat. If they are traveling far, it becomes harder to research what is available at that location. [23:20] Ryan tells how he prepared for a semester abroad in France. [24:05] Declan’s biggest challenge of living with EoE is making sure he has a place to eat if he’s away from home or on vacation. He always has to research a restaurant to know if they have anything he can eat there. [24:39] Holly always carries a bag with safe snacks like protein bars, and medicines, in case she can’t find safe options at a restaurant or a store with foods she can eat. [25:37] Holly and Ryan thank Declan for sharing his experiences to help others. [25:46] Declan’s closing thought: “You shouldn’t let EoE define you. Know that there are a lot of people that are there to support you; your friends, your family, and even different communities like this one, that can help give you knowledge and support you. Also, you should definitely be open to trying new things.” [26:54] To learn more about eosinophilic esophagitis, visit , to access the Specialist Finder, visit . Ryan and Holly thank Declan again for a great conversation and thank APFED’s education partners, linked below, for supporting this episode. Mentioned in This Episode: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “I just like to do the normal stuff that kids my age do, whether that’s hanging out with friends or playing video games; I also play the cello. I’ve been living with EoE for about four years, now.” — Declan “Once I started the dairy-free diet, I eventually got my eosinophils to zero when I had my second scope, which was really good.” — Declan “Research is the key. … If we’re going to go to a different state, we always research to see in the area where we’re staying, what places I can and can’t eat.” — Declan “It’s a really interesting experience. My journey has a lot of highs and lows, but in the end, I got to experience so much.” — Declan About Declan: Declan is 16 years old and has been living with EoE since 2019. He is in 11th grade and has been playing the cello since 4th grade. He is a huge fan of classic movies, and his favorite classic movie of all time is “Jaws”. He has a passion for architecture and science and loves to play video games and hang out with his friends.
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Esophageal String Test: Monitoring Tool Use and Development
08/29/2023
Esophageal String Test: Monitoring Tool Use and Development
Description: Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council, talk with Drs. Robin Shandas and Steven Ackerman, are scientists who work together at EnteroTrack. In this episode, Ryan and Holly interview Drs. Shandas and Ackerman about the development of the esophageal string test (EST), or simply the string test. They discuss the initial concept and the work that led to the development of the string test to collect samples from the upper gastrointestinal mucosa. The test involves swallowing a capsule, similar in size to a TicTacⓇ, with a string attached. It began as an overnight test, and today is a one-hour test. During the conversation, the researchers explained the use of the string test as a monitoring device for EoE, not as a diagnostic device. They describe how the test is administered with no endoscope, no anesthesia, no recovery time, and only minor discomfort for some patients. They discuss the age range for using the device (as young as 4) and the advantages it offers over traditional endoscopy and biopsy for frequent monitoring of eosinophilic esophagitis. Finally, they advise patients on how to access the test: Ask your clinician about it! Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. Holly introduces the topic of a new unsedated diagnostic tool for EoE, the esophageal string test, or for the purposes of today’s podcast episode, the string test. [1:34] Holly introduces Drs. Robin Shandas and Steven Ackerman, are professional scientists who work together at EnteroTrack. Dr. Shandas is the Chief Executive Officer and Dr. Ackerman is the Chief Science Officer. [1:48] Drs. Shandas and Ackerman, with a team of entrepreneurs, engineers, medical doctors, and scientists, developed the EnteroTracker®, the esophageal string test, a new method for collecting and sampling upper gastrointestinal mucosa. [2:00] Holly thanks Drs. Shandas and Ackerman for joining us today. [2:19] Dr. Ackerman has worked on the biology and the roles of eosinophils in the pathogenesis of allergic diseases, including asthma, eosinophilic gastrointestinal disorders, and other hypereosinophilic syndromes for the past 40 years, starting when he was a post-doctoral fellow at the Mayo Clinic in Rochester, Minnesota. [2:44] About 18 years ago, Dr. Ackerman transitioned his lab to do more clinical translational research in eosinophilic GI diseases. His lab developed and validated the string test and the biomarkers and immunoassays that they use to evaluate the results. [3:10] Dr. Ackerman was also interested in studying how the eosinophil participates in tissue remodeling and fibrosis of the esophagus in EoE and other eosinophil-associated diseases. Notably, this started with a small research grant from APFED in 2007 to 2008, which was followed by a more substantial APFED grant in 2011. [3:51] Ryan was involved in APFED in 2007 and he remembers hearing about the early work that was going on for this new test. He thought it would be fantastic to have a test without anesthesia or a scope down his throat. It was exciting to hear about the development over time. [4:23] Dr. Ackerman and Dr. Glenn Furuta, a pediatric gastroenterologist, initially conducted eosinophilic disease research together at Harvard Medical School. Dr. Ackerman eventually went to Chicago but continued to interact with Dr. Furuta. They published papers together on eosinophils and their roles in GI diseases. [4:47] Dr. Ackerman was inspired to develop the string test when Dr. Furuta pointed out to him the tremendous need for a minimally-invasive or non-invasive test for EoE that would remove the need for children to have multiple repeat endoscopies and biopsies under sedation. [5:11] The endoscopies and biopsies were done to follow patient responses to treatment, especially food elimination diets. Dr. Ackerman’s goal was to provide a way to evaluate disease activity in children with EoE in a minimally invasive or non-invasive fashion. [5:42] Dr. Shandas is a biomedical engineer, entrepreneur, and educator. He has been a scientist for over 30 years. He is a Distinguished Professor of Bioengineering at The University of Colorado. His passion is to take ideas that he thinks can help people and go through the work. It’s really, really hard work to bring those ideas to the clinic! [6:07] Dr. Shandas has been working on the string test for some time. He started eight companies to support this type of activity. The idea of the string test, a simple, non-invasive way to collect samples from the esophagus to support frequent and granular monitoring of disease activity, was compelling when Drs. Furuta and Ackerman presented it to him. [6:38] After Drs. Furuta and Ackerman received funding from APFED they did a lot of basic science research to develop the foundation of the string test. They approached Dr. Shandas to see if he could take the idea and figure out how they could help patients with it. That was compelling to him. He learned a lot about GI and EoE in the process. [7:30] Dr. Ackerman and Dr. Furuta started working on the string test in 2006. It took more than 16 years from concept and pre-clinical lab studies to its marketing and adoption for routine clinical use. It was officially in the clinic at the beginning of 2023. [8:01] Holly Knotowicz was a clinical fellow at Children’s Hospital Colorado in 2010 where they were talking about this and she recognized this would be life-changing for patients in all populations not to have to participate in sedation to get updated information. [8:32] The esophageal mucosa has biological information that may reflect the status of the disease in the esophagus. The conventional way of evaluating what is happening in the esophagus is to put a scope down the throat, pinch out a biopsy from the esophagus, and analyze that tissue for inflammatory cells and inflammatory markers. [9:19] Dr. Shandas learned that the mucosa lining the esophagus has a lot of biological information. Because it is a barrier between the outside and your body it has a lot of biochemical reactions; it may be exposed to environmental allergens or food issues. These things interact with your body through the mucosal layer. It’s a complex layer. [10:08] Scientists are just starting to figure out the number of things that go on in the esophageal mucosal layer. The string test samples the esophageal mucosa from the throat down to the stomach, for the entire length of the esophagus. The mucosa is the repository of information on how your body interacts with EoE. [10:39] The molecules that the body releases as a function of the reaction that’s taking place are expressed in the mucosal layer. The string test collects samples of that mucosal layer. It’s a simple, non-painful, non-traditional method of sampling. [11:10] The researchers figured out there’s a lot of biological information in the mucosa. Dr. Furuta and Dr. Ackerman have both done clinical studies comparing the string test against traditional biopsies to show that there are great correlations. So they set out to develop a clinically available test. [11:30] For the past eight years, EnteroTrack has done work to answer questions such as: What is the process of swallowing the device and getting the sample? What is the process of analyzing the sample? And how do we put all of that into the framework of a clinical product that can be available to patients and clinicians? [11:49] The string test is a phenomenally simple, easy way to sample mucosal content and analyze it for biomarkers, with no need for any sedation or anything to help you swallow the device. It’s a very simple technique. [12:32] Dr. Ackerman was a skeptic when Dr. Furuta first approached him with the idea. He agreed on the need to sample at the site of inflammation. He was surprised at how good the test was in the 16-hour overnight format, compared to endoscopy and biopsy. It was hard to tell the figures apart between the two tests. [13:14] Dr. Ackerman learned they only needed to measure one eosinophil-specific biomarker, major basic protein-1, for a 16-hour test, but when they changed it to a one-hour test, they needed to measure two biomarkers to get enough of a sample. The second biomarker is eotaxin-3, which attracts the eosinophils into the esophagus. [14:18] Dr. Ackerman tells of clinical validation. After multiple applications to the FDA Rare Diseases Program, they were able to get substantial funding to do a Stage 2 clinical evaluation. It was a four-year grant but it took six years to recruit all the patients. They completed and published it in 2019 as the basis for the string test and EoE score. [15:03] Today, the string test is a one-hour test. The visit takes about 90 minutes, including the test, preparation, and removal of the string. The sample is sent to a reference lab. They analyze it and in about 10 days, send your doctor a report that describes the EoE score and the magnitude of the disease. [16:43] There is no recommended frequency for the string test. It can be done as often as your doctor wants to keep track of changes in your disease. Until the string test, there hasn’t been a real solution to monitor the disease, with samples every week, two weeks, or four weeks. The researchers encourage patients to ask their clinicians for the string test. [18:19] After setting a baseline, the frequency of tests can be determined by the patient’s progress and the clinician's findings. [18:45] The string test is not a replacement for endoscopy. Endoscopy plays an important role in definitively diagnosing the disease and getting a comprehensive sense of what’s going on with the disease. The string test is a complement to endoscopy. [19:23] An endoscopic pinch biopsy samples a tiny fraction of the esophageal surface area. EoE is a patchy disease. It can manifest in different places in your esophagus. You may need to do multiple biopsies to make sure you’re covering the esophagus nicely and identify a location where the disease manifests. [20:01] An advantage of the string test is that in one test, you get a sample from your throat to your stomach, the entire length of the esophagus. That allows you to get a very comprehensive evaluation of your esophagus. The ease, cost, time savings, out-patient setting, no endoscopy suite, no endoscopist, and no anesthesiologist, are advantages. [20:39] EnteroTrack is pursuing the possibility of doing point-of-care in-home use of the string test. This would be a significant advantage over the traditional way of monitoring the disease. [21:08] A string test cannot be used instead of an endoscopy to make the initial diagnosis of EoE. It’s intended as a monitoring tool. Its clinical indication is not as a diagnostic test but for monitoring the disease, in combination with a lab analysis of the assay. Endoscopy is used for the diagnosis. [21:45] In areas where endoscopy and biopsy are not locally available, doctors might use the string test to screen patients to consider referring them to a center where they can get an endoscopy and a biopsy as an initial diagnostic tool. [22:49] Holly is excited to have access to the string test for patients on elimination diets, to test more frequently as foods are reintroduced one at a time to the diet, without putting the patient under anesthesia for a traditional endoscopy. [23:58] During the monitoring of EoE, if the doctor sees the data is trending in a certain way, it may be useful to get an endoscopy and biopsy to get additional information. [24:28] Ryan has had dozens of traditional endoscopies and biopsies so he’s always excited to hear about new tests. He’s been putting off an endoscopy and he needs one soon. Is Ryan, an adult, a candidate for this procedure at his local hospital? Yes! He has been diagnosed with EoE, so he can be monitored by the string test. [25:12] The youngest patient to swallow the device was a four-year-old and they did great with it; the test was very successful. EnteroTrack recommends that parents talk to their child’s physician about the option to use this device. The key is if the patient, parent, and clinicians all feel that the patient can swallow the device. [25:35] The string test device is about the size of a TicTac®. It’s important for the swallowing procedure to be successful. EnteroTrack works with clinical groups to give them tips on how best to ensure that the procedure is successful. [25:56] Holly is a feeding specialist. One of the things she helps people with eosinophilic diseases to learn is how to swallow pills. She helps them practice with different kinds of candies and capsules. [26:40] The clinical validation study included patients aged seven and older. Now that the product is released, clinicians, parents, and patients can together make the decision if they can swallow it. EnteroTrack looks at de-identified data to evaluate how the string test is doing. They are seeing younger age groups successfully swallow it. [27:25] There are factors that contribute to successful swallowing. One is the parental motivation of their children. Also, practice swallowing something the size of the device. [27:39] EnteroTrack is providing training to physicians and nurses at the centers that are adopting the test. They are aware of how to make the swallowing part of this test as successful as possible with the least amount of stress. [28:02] The EnteroTracker® is considered a minimal-risk device, and minimal-risk procedure. If you are anxious about swallowing, or you have challenges as you swallow it, you may gag a little bit. [28:37] In the Phase 2 data, there was a small percentage who had challenges in terms of gagging, when swallowing the device. All of those issues were resolved. Even if the patient gags, the clinician has tips to help the patient get through that. Repeated gulps of water can help bring the capsule down and alleviate those issues. [29:37] In the clinical validation studies, there were hundreds of string tests performed and there were no serious adverse reactions or problems other than the minor problem of some gagging. During the 16-hour tests, there was one patient who chewed through the string while sleeping and swallowed it. The string just passed through the GI tract. [32:47] Dr. Shandas has personally swallowed about 50 string tests to understand the patient experience. After the swallow, when the string is in the esophagus, there is a feeling of tickling in the side of the throat in the beginning, but that resolves in a couple of minutes and it is not noticed at all. It helps if the patient has something to occupy their attention. [34:05] The nurses and clinicians are trained to pull the device out, not fast and not slow. It should take three to five seconds. There is some discomfort as the string is coming out. It may feel like burning in the throat but it happens quickly and it resolves immediately. They have not seen big challenges with this, much less than in swallowing. [34:50] The string has two parts. The part that goes from your mouth down your throat is like dental floss. It’s connected to the collection string that goes down the esophagus to the stomach. That collection string is a thicker nylon yarn designed to optimally collect mucosal samples. It would be uncomfortable in the throat, but not in the esophagus. [36:06] EnteroTrack has gotten a Medicare code for the assay and a Medicare reimbursement for the assay. The next step is getting private insurers to pay for the test. EnteroTrack is working on that. It will require educating insurance companies about the value of the test. Patients, clinicians, and groups like APFED can help. [37:51] The string test is clearly less expensive than doing an endoscopy and biopsy. That should be one of the motivating factors for insurance companies. It is significantly lower cost than the test that is used as the standard of care. [38:38] Some large centers have begun using the esophageal string test, including Denver, Phoenix, Tampa, Dallas, and Chicago. EnteroTrack has received interest from clinicians and patients around the country. [39:04] Patients and parents, let your clinicians know if you are interested in the esophageal string test (EST). Your doctor can contact EnteroTrack and ask how to get the test to their clinic. It’s a simple process and the clinical training is very straightforward. [39:35] APFED plans to add information about the esophageal string test to its Specialist Finder at apfed.org/specialist to help patients find clinicians offering this test. [39:53] Drs. Ackerman and Shandas anticipate that the number of centers offering this test will grow exponentially as people see that it’s working for early adopters. [40:10] Ryan and Holly thank Drs. Shandas and Ackerman for sharing their expertise to help others today in the podcast. Dr. Shandas thanks Ryan, Holly, and APFED for the opportunity to talk about the string test. [40:35] As entrepreneurs and researchers, they are constantly innovating, including looking for other applications for the string test. They have clinical trials going on to use the string test for esophageal issues, gastric issues, and small intestinal issues, analyzing the contents for different biomarkers that have correlations with a lot of upper GI diseases. [41:22] To learn more about eosinophilic esophagitis, visit , to access the Specialist Finder, visit , and to connect with patients and families living with eosinophilic disorders, visit . Ryan and Holly thank Drs. Shandas and Ackerman again for an interesting conversation and thank APFED’s education partners, linked below, for supporting this episode. Mentioned in This Episode: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “I was interested in studying how the eosinophil participates in tissue remodeling and fibrosis of the esophagus in EoE and other eosinophil-associated diseases. Notably, this started with a small research grant from APFED in 2007 to 2008.” — Dr. Steven Ackerman “The mucosa that lines your esophagus has a lot of biological information. … The mucosa is the barrier between the outside world and your body. It is this very interesting biological fluid and … it has a lot of biochemical reactions.” — Dr. Robin Shandas “Since we released the product earlier this year, we’ve had a four-year-old swallow the device; did great, very successful. And so, we recommend that patients, parents, talk to your physician.” — Dr. Robin Shandas Featured speakers:
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Live from APFED’s EOS Connection 2023
07/26/2023
Live from APFED’s EOS Connection 2023
Description: Ryan Piansky, a college student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech pathologist living with EoE who specializes in feeding therapy and serves on APFED’s Health Sciences Advisory Council recorded this episode live at APFED’s annual patient education conference in Denver, CO. They shared their experiences with this year’s conference, discussed takeaways from the conference presentations, and offered ways to continue the conversation. Recordings of the conference presentations are available to watch on-demand at apfed.org/conference through December 2023. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. They recorded this episode at the conclusion of APFED’s Annual Patient Education Conference, held June 30 and July 1, 2023 in Denver, CO, in collaboration with Children’s Hospital Colorado. [1:39] Also collaborating on this year’s conference was the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). There were a lot of great sessions at the conference. Holly attended almost all the conference sessions virtually. She felt as engaged as if she were present. She loved the talks on nutrition. [2:48] Holly loved the presentation on EGID diagnostics, both current and what’s coming down the pipeline. It had so much helpful information she can share with her patients that don’t receive care at a major hospital. [3:14] Ryan talks about an exhibit they couldn’t show virtually: a hands on transnasal endoscopy exhibit. People got to play with the controller and practice what it is like for a doctor to do a transnasal endoscopy on a model of the nasal cavity, esophagus, and stomach. Attendees of all ages were invited to try it. [3:38] Ryan found that he wasn’t very good at it. It takes practice! He recalls previous podcast episodes where this technology was discussed. [4:04] Holly received lots of text messages about feeding therapy strategies and transnasal endoscopy. She received at least 13 photos from people who tried the transnasal endoscope with their children. She was jealous not to have been at the conference. Families also reached out to Holly about the string test study. [4:58] Jane Robinson, PhD, presented ways patients can cope with and overcome some of the fears surrounding these new diagnostic methods and treatment options. A lot of kids are scared of getting shots to receive biologic treatments. She also met with an on-site teen group. Ryan loved going to APFED conferences as a teen. [5:49] Dan Atkins, MD also did a Q&A session with the teens. Holly missed being there in person to connect with other EoE patients. The teen group at the conferences were helpful when she was growing up. The teen pictures Holly received were a riot. It looked like a good time. [6:31] The main conference sessions were recorded and will be available on demand to view and engage with through the end of the year. [7:11] Oral Immunotherapy (OIT) was a hot topic in the Q&As, including who could qualify for it. Ryan is excited about biologics as an option for the treatment of EoE and eosinophilic diseases. Ryan was glad the CEGIR scholars were able to present virtually at the conference. [8:12] In 2024, APFED will host the EOS Connection conference in the Washington, DC. area. Ryan hopes to see everyone there in person or virtually. [8:29] Throughout the year, APFED also hosts a webinar series. Recordings of past webinars are posted at and shared on social media. They’re a great way to stay in touch with APFED and see what research is being done. Recent webinar topics include diagnostic tools and eosinophilic disorders, the microbiome and eosinophilic esophagitis, and creative cooking with eosinophilic disorders. Holly is all about the food! [8:59] Ryan and Holly host this podcast monthly. They interview experts in all different types of eosinophilic diseases from all over the world and individuals who share their experiences with eosinophil-associated diseases. [9:34] The last podcast episode that was released was about proton pump inhibitors (PPIs) and EoE, and was co-hosted by Holly Knotowicz and APFED’s Executive Director Mary Jo Strobel. Ryan is excited for the upcoming slate of podcasts including more patient perspectives. [9:59] Please check out to access all the conference sessions on demand, including presentations to help you get caught up on the latest research and wonderful patient perspectives from the conference panels both Friday and Saturday. [10:12] Ryan thanks all of the attendees for joining, especially those who traveled to attend in person. It was wonderful to see so many people back in person. Ryan is thrilled that many were also able to access the conference remotely. You can explore the virtual conference through December 2023 at apfed.org/conference, including a virtual exhibit hall and poster hall. [10:38] Ryan hopes to see you all at the EOS Connection 2024 conference in Washington, DC. Please stay tuned for APFED emails and updates through social media. Please tune in to the podcast and webinars. You are invited to stay connected! [10:53] Holly thanks everyone for tuning in to this episode of Real Talk — Eosinophilic Diseases, and she hopes to see you at APFED’s webinars and podcasts! [11:00] Special thanks to our EOS Connection 2023 collaborators and education partners , , , , , , , , , , , , , , , and . [11:34] To learn more about APFED, visit and follow APFED on social media. Mentioned in This Episode: APFED on , , , , Tweetables: “We’re working with Children’s Hospital Colorado … and … we have been thrilled to have them collaborating with us [on the conference] this year.” — Ryan Piansky “I feel like I was so connected because I have so many people there in person that were texting me and sending me pictures.” — Holly Knotowicz
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Proton Pump Inhibitors and EoE
06/23/2023
Proton Pump Inhibitors and EoE
Description: Co-host Mary Jo Strobel, APFED’s Executive Director, is joined by co-host Holly Knotowicz, a speech-language pathologist and feeding specialist living with eosinophilic esophagitis (EoE) who serves on APFED’s Health Sciences Advisory Council. They talk with guest Dr. James Franciosi, Chief of the Division of Gastroenterology, Hepatology, and Nutrition at Nemours Children’s Health in Orlando, Florida. In this episode, Mary Jo Strobel and Holly Knotowicz interview Dr. James Franciosi about his research with proton pump inhibitors, personalized medicine, the different factors that influence the response EoE patients may have to very high dose PPI treatments and other treatments, including dietary eliminations, swallowed oral steroid medications, and for some patients, biologic medications. Dr. Franciosi explains the uses of these various treatments and compares the risks of medical treatments with the risk of untreated EoE. He also describes the potential for advances in treatment choices. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Co-host Mary Jo Strobel welcomes co-host Holly Knotowicz. Holly introduces the topic of proton pump inhibitors and EoE. [1:28] Holly introduces Dr. James Franciosi, Chief of the Division of Gastroenterology, Hepatology, and Nutrition at Nemours Children’s Health in Orlando, Florida. [1:39] Since 2008, Dr. Franciosi has cared for children and teens with eosinophilic esophagitis (EoE) and eosinophilic gastrointestinal diseases (EGIDs). His team’s mission is to reduce the symptoms of EoE and EGIDs and they have published more than 60 peer-reviewed publications. [1:55] Holly thanks Dr. Franciosi for joining the podcast. [2:06] Dr. Franciosi “grew up” with Beth Mays (now Beth Allen), whose family suffered from eosinophilic GI disease. When Dr. Franciosi was at the Children’s Hospital of Philadelphia (CHOP), he became very interested in eosinophilic esophagitis, which was starting to emerge as something that was different from gastroesophageal reflux. [2:30] Dr. Franciosi had the opportunity to work with Dr. Liacouras, Dr. Spergel, and many others at CHOP. He transitioned to Cincinnati Children’s Hospital with the leadership of Dr. Marc Rothenberg, Dr. Phil Putnam, and a group trying to optimize the care for children with eosinophilic GI disease. [3:01] Dr. Franciosi then moved to a leadership role at Nemours Children’s Health in Orlando, Florida. He has been with Nemours Children’s Health for the past 11 years. There he has done additional research in eosinophilic disease and seen many changes for the good with these conditions. [3:37] Mary Jo notes that early in his career, Dr. Franciosi had worked with Beth Mays, now Beth Allen, who is one of the founders of APFED. Dr. Franciosi has been working with eosinophilic diseases since the time APFED was founded. [3:56] Dr. Franciosi has conducted research into how the role of proton pump inhibitors (PPIs) in the evaluation and treatment of EoE has evolved over time. His team is very interested in what therapies may be effective for eosinophilic esophagitis (EoE) for individual patients. [4:24] The research Dr. Franciosi has been doing for EoE and other conditions is trying to look at the right drug for the right patient, with the right dosing, etc. He calls that precision medicine or personalized medicine. [4:39] Proton pump inhibitors (PPIs) are medications that have been around for decades. There has been an evolution of thought about whether this is a medicine that we use to define the condition of EoE or now something we can use as a treatment option. [4:57] There have not been any randomized, placebo-controlled clinical trials for EoE using this medication and there has been a lot of variability in the literature about how well they work. That’s some of the research Dr. Franciosi has been looking into and also making sure that these are communicated as an option for the right patients with EoE. [5:27] PPIs are traditionally thought of as blocking one of the common pathways for acid in the stomach. A proton pump in parietal cells in the GI tract pumps acid into the stomach that helps you fight bad bacteria. Sometimes the acid can cause irritation in the GI tract, the stomach, and the esophagus. The PPIs work to block those pumps. [6:15] Over the past several decades, the thinking around EoE has evolved from it being thought to be a reflux condition that had a lot of eosinophils or allergic cells, that just didn’t get better, to being thought of as strictly different from reflux, to thinking that it may be a mix for some patients. [6:42] As the first guidelines for EoE were developed, the initial thought was to use the PPI medications to exclude gastroesophageal reflux. In the first consensus guidelines, patients had to fail the proton pump inhibitors at a high dose to be defined as EoE. This has changed over time. In 2018 there were new guidelines with new research. [7:15] The newer thinking is that the PPIs are not to make the diagnosis, but they’re one of several different therapies that we can use; dietary interventions and different medications, including PPIs, swallowed steroids, and some of the newer biologic medications. [8:14] H2 blockers are some of the older medications that block acid in the stomach, but they block it in a different way. They block the histamine type-2 receptor, one of the pathways by which acid is produced in the stomach. The proton pump inhibitors block the proton pump. They’re stronger medications and they work better for acid. [8:46] The H2RA medications have names that end in “tidine” like famotidine. The PPI medications have names that end with “azole” like pantoprazole or esomeprazole. [9:45] EoE is a condition that we’ve learned a lot about over the past several decades. The PPI medications may have different functions. They may block the acid in the stomach; they may also have a role in reducing some of the inflammation. This led to questioning if PPIs should be used to make a diagnosis or as a choice of therapy. [10:36] From the 1990s to the 2000 era, to the most recent guidelines in 2018, the thinking about the treatment of EoE and the use of PPIs has evolved. [10:49] One of the important things to know is that just because you’ve been on a PPI, doesn’t mean that you’re on a high dose of PPI therapy. This is important in children and different practices. [11:12] The general recommendation for PPI therapies is to use a high dose of PPI twice a day. For adults, that’s 40 mg of esomeprazole twice a day. For children, it’s 1 mg per kg of body weight twice a day. That’s a high dose. For some people, it may be that the medication was not used at a high dose. [11:37] The goal ultimately is to back off the high dose and to decrease the amount of medication that’s being administered. [11:47] Dr. Franciosi says the main surprise in his findings was that the studies in both adults and children are “all over the place.” Some people report a 30% or 20% response; other colleagues throughout the world have reported a response of about two-thirds of the patients. It was surprising to see how variable the response was. [12:18] Dr. Franciosi thinks there is variation in the choice of PPI medications, the dosing, and how they’re administered. Dr. Franciosi and his team are also looking at how people respond to these medications. That’s where personalized medicine comes in; your genes, and factors in your body can influence how well you are responding. [12:53] Precision medicine has been used in pediatric gastroenterology for inflammatory bowel disease with medications like 6-mercaptopurine, azathioprine, and some of the biologic medications. People can respond differently to medication. Genetic variation or other factors may create different patterns of response to the same medications. [13:25] Precision medicine and personalized medicine are interchangeable terms. [13:48] Before reviewing the literature for his most recent publication, Dr. Franciosi had done some genetic testing and identified that there are genetic variations that do influence how people respond or don’t respond to the PPI medications. [14:09] We need to learn more about genetic variations. Dr. Franciosi thinks for every new diagnosis of EoE, PPIs should be considered as a medication. It’s important for patients and families to know the different options. Providers may have their own biases but they should lay out the options for their patients and families to decide. [14:47] Dietary intervention has significant benefits for children, teens, and adults. There can be hardships with quality of life that have to be considered. Taking medication for the long term also has considerations. The newer biologic medications are a fantastic step forward but they are expensive. They are just starting to be used for EoE. [15:21] Dr. Franciosi likes to identify to his patients that there are options in treatments: dietary elimination, proton pump inhibitors, swallowed steroids, and biologic medication for people who have strictures (narrowing) in their esophagus or fibro stenosis (scar tissue). These patients are less likely to respond to PPI medication. [15:57] We need to do more research on this and more future prospective trials, patients with scarring are those where a different type of therapy beyond the PPI medications. Patients with inflammatory symptoms seem to respond to PPI medication. [17:04] Dr. Franciosi’s patients and families are making some choices together. Dietary elimination may not be the right choice for certain patients but they need to have the option. Dr. Franciosi presents dietary elimination as effective for many patients. It’s an investment upfront. It presents the benefit of not using long-term medications. [17:44] Sometimes when children have growth concerns, or the dietary interventions don’t work or are not possible, different medications may be considered. [18:13] The benefit of using PPIs in treatment is that you can reduce the inflammation that’s occurring, alleviate symptoms and make patients feel better. There has been some debate about whether this is related to the acid primarily in the stomach and some breaks in the esophagus lining that cause antigens to go in and cause inflammation. [18:51] Dr. Franciosi uses a balanced approach with patients and families. He tells them every treatment has risks associated with it. Also, not treating EoE has risks. He did studies at Cincinnati on what happened to patients 15 years later if they were untreated. It can involve more scar tissue, strictures, symptoms, and growth issues. [19:37] PPIs have gotten a lot of bad press over the past few years, primarily looking at the rates of infection. When you block stomach acid, that acid is no longer there to kill bad bacteria. So there are more associated respiratory infections and stomach infections like gastroenteritis, GI bugs, etc. [20:02] Other risks that have been talked about are dementia and kidney issues, often in older populations and patients who are generally sicker. Many people are on PPIs for general GI disorders unnecessarily. If you don’t need a drug, you shouldn’t be on it. [20:34] The risk/benefit analysis of the infections, and other people have talked about low bone mineral density, etc., have to be balanced with the risk of untreated disease and the potential risk of other medications, as well. [21:14] For the vast majority of patients, EoE is a chronic, long-term condition. Once you take the treatment away, whether that’s eliminating foods, or taking medication, the condition will come right back. That’s also true with proton pump inhibitors. [21:36] The recommended approach for PPIs is a high dose of medication twice a day, to start, a repeat endoscopy after eight to 12 weeks, and come down to maintenance, which would just be once a day. [21:55] Colleagues in Spain, who have published on this, have said about two-thirds of patients responded to the really high dose PPI medications and that among those people that respond, about two-thirds continue on maintenance and do well. Not everybody will necessarily respond or do OK with the lower dose of medication. [22:17] In general, if you take away the medications or the treatment that you’re using, the disease will come right back and those risks of progression or scar tissue, creating strictures, and developing symptoms would return as well. [22:39] If you are considering PPIs, ask your doctor their perspective on the different treatments that Dr. Franciosi has been discussing here. Considerations include PPIs, dietary elimination, swallowed steroid medications, and for some patients, biologic medications. Dr. Franciosi thinks biologics will become more used over the years. [23:43] Dr. Franciosi would recommend asking a treating provider about the choice of PPI medications, the dosing that they’re planning to use, whether or not it is high-dose medication, and even what the plan is for coming down off the medication with an endoscopy or a transnasal endoscopy in eight to 12 weeks, and maintenance. [24:03] In the U.S., high-dose PPI may not be covered by insurance. They may approve 40 mg of esomeprazole once a day but not twice a day, or make it challenging to get approved. The patients may do the second dose over the counter and Dr. Franciosi will walk them through how to do that. [24:58] Dr. Franciosi thinks the ideal would be that patients are diagnosed with eosinophilic esophagitis and then get a cheek swab to determine their profile and what kind of response they will have using esomeprazole or if he recommends oral viscous budesonide or fluticasone. It would also be great to identify who may respond or not respond to biologic medications. [25:37] The ideal of personalized or precision medicine is to be able to identify the right choice of treatment, including dietary approaches, for the right patient, at the right dosing. [25:50] An underappreciated area for EoE is recognizing that we don’t have good testing to identify food reactions, allergies, etc. It would be wonderful. Allergy testing doesn’t correlate because it’s mostly IgE based. So that’s a reason for dietary elimination. [26:38] Mary Jo and Holly thank Dr. Franciosi for participating in the podcast. Dr. Franciosi says the takeaway is that PPIs should be considered as an option for various patients. [27:20] To learn more about eosinophilic esophagitis, visit , , and . Holly and Mary Jo thank APFED’s education partners, linked below. Mentioned in This Episode: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and . Tweetables: “We’ve been very interested in what therapies may be effective for eosinophilic esophagitis, or EoE. The research that we’ve been doing … is trying to look at the right drug for the right patient, at the right dosing, etc.” — James Franciosi, MD “The main benefit [of using PPIs as a treatment for EoE] is that you can reduce the inflammation that’s occurring, [and] alleviate symptoms to make patients feel better.” — James Franciosi, MD “Once you take the treatment away, whether that’s eliminating foods, or taking medication, for the vast majority of people, the condition will come right back. That’s also true with proton pump inhibitors.” — James Franciosi, MD Featured speaker: Gastroenterology at
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A Global Look at Eosinophilic Disorders: Unmet Needs
05/18/2023
A Global Look at Eosinophilic Disorders: Unmet Needs
Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Florence Roufosse, MD, PhD, Professor of Medicine, Internist and Clinical Immunologist at CUB-Hôpital Erasme, Brussels, and President, International Eosinophil Society. In this episode, Ryan and Holly discuss with Dr. Roufosse some of the many unmet needs related to eosinophil-associated diseases. The discussion covers diagnosis, treatment, access to multi disciplinary care, research, and awareness. Dr. Roufosse identifies specific questions she sees an urgency to address and discusses clinical trials. Listen in for a better understanding of some of the unmet needs of patients with eosinophil-associated diseases. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [0:50] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic: a global look at eosinophilic diseases and unmet needs. [1:28] Holly introduces Dr. Florence Roufosse. Dr. Roufosse is a professor of medicine, an internist, and a clinical immunologist at Erasme Hospital in Brussels and is President of the International Eosinophil Society. [1:43] In addition to her clinical work, Dr. Roufosse leads translational research projects to improve the understanding and treatment of hypereosinophilic syndromes (HES). She is also involved in international clinical trials evaluating treatment options for patients living with HES and eosinophilic granulomatosis with polyangiitis (EGPA). [2:18] Dr. Roufosse is an internist working in an academic hospital. An internist is a diagnostician, whom people see if they have many complaints that involve various organs to find a unifying diagnosis for their problems. [2:47] Dr. Roufosse’s interest in eosinophils started when she met Dr. Elie Cogan. He had just published a case report on a patient with hypereosinophilic syndrome who also had T-lymphocytes present. The T-cells were producing growth factors for eosinophils. [3:21] The hypereosinophilic syndrome in the patient was due to these abnormal T-lymphocytes. The case was in 1996. Dr. Cogan asked Dr. Roufosse if she would agree to do a doctoral fellowship on the topic and try to dive deeper into understanding the disease in this patient. [3:37] Dr. Roufosse has been working on HES ever since, doing translational research, working with blood samples from patients she sees in the clinic, and studying the cells functionally and on a molecular basis. Dr. Roufosse is foremost a clinician who sees patients in the clinic every day. [4:00] Dr. Roufosse regularly gets referrals for HES and EGPA. She has a large cohort of patients. Her main job consists of reaching a diagnosis and giving the best treatment to these patients. [4:44] The main mission of the International Eosinophil Society (IES) is to bring together clinicians, investigators, and researchers interested in eosinophils and eosinophilic disorders. The society held its first meeting in 2001. The pandemic prevented them from celebrating their 20th anniversary in person, but they will meet this summer. [5:20] IES brings together clinicians who see patients and people who investigate eosinophils in the lab. Close interactions between clinicians and investigators drive the motivation to understand the biology of these disorders, find the therapeutic targets, and work together, combining findings to make progress. [6:52] There are common unmet needs for eosinophilic diseases and specific unmet needs for individual diseases. Transitioning from pediatric to adult care is an unmet need in eosinophilic esophagitis because the disease begins in childhood. However, eosinophilic syndrome and EGPA occur most commonly in adults. [7:51] Diagnosis is a bottleneck. When people get the right diagnosis, they are already well on their journey of receiving treatment. Diagnosis combines the need for increased awareness among patients, the public, and physicians. A delayed diagnosis may have consequences for patients, such as a progressive disease that is not controlled. [8:31] High levels of eosinophils have the potential to damage organs and induce functional damage and functional alterations. They favor fibrosis. The longer eosinophils stay at high levels, the more harm can occur, so there is a consequence in delayed diagnosis. [8:55] Patients with high eosinophils in blood and tissues will often receive corticosteroid therapy. This is good for a few days but there are numerous side effects to corticosteroid therapy in the short-, middle-, and long-term. Also, the longer the journey is to diagnosis, the more people get discouraged and depressed. [10:02] Part of the unmet need in diagnosis is awareness. There’s a saying, “What you don’t know, you can’t diagnose.” Many physicians don’t know about these eosinophilic conditions. [12:13] APFED and Dr. Roufosse worked together to author “Improving Care in Eosinophil Associated Diseases: A Charter.” The charter outlines the needs and the rights of patients with eosinophil-associated diseases. [13:03] The rights of patients include the right to a timely diagnosis, which implies awareness about the diseases among the public, healthcare providers, and policy makers. Patients also have the right to access multi disciplinary care teams, as the disease may affect different tissues and organs. A patient may even have several disorders at once. [14:06] It’s important that if treatment options are available; patients need to have access to them. This is not the case in all countries. Patients need rapid access to the therapies once an indication has been decided by a specialist. [14:53] Quick diagnosis will decrease the accrual of damage due to the disease, inadequate treatment, and overexposure to corticosteroid treatment. From a psychological point of view, it’s very reassuring to rapidly feel that a label has been given to the disease and that there’s a plan. When there’s no label, there’s no plan. [15:47] The key to shortening the diagnostic timeline is awareness at all levels of healthcare education and specialization. General practitioners need to be educated on what it means and what to do when they see a high eosinophil count in blood or tissue. There needs to be access to the tools to diagnose the associated disorders. [17:00] Patients need easier access to referral centers where they see the experts and access the tools for diagnosis. Multidisciplinary team care is needed when diseases hit different organs. [17:44] When EGPA is controlled with immunosuppressive therapy, often asthma remains a serious problem and very difficult to manage. You need a pulmonologist to take care of that aspect. You need an ear, nose, and throat doctor for complications in those areas. Cardiovascular complications need a cardiologist. [19:21] Dr. Roufosse says it is still challenging for patients to access a multidisciplinary care team. Creating a multidisciplinary care team requires resources. It has to be supported by a hospital. The institution needs to be an academic institution with funding, as doctors meeting to discuss a difficult case does not generate income for the institution. [20:39] Ryan worked with a multi disciplinary care team as a young EoE patient. He traveled every year from his home in Georgia to the multi-disciplinary care team in Denver, Colorado. The fact that his family was able to travel out of state was wonderful. The team was effective and he misses it. Now he has separate appointments for each type of doctor. [22:32] New therapies, for those who have had access to them through clinical trials, are decreasing the need for corticosteroid therapy in many patients. Practically half of the patients with hypereosinophilic syndrome can be tapered off corticosteroids. Dr. Roufosse tells of one of her first patients, whose life was changed by these therapies. [24:04] Not every aspect of disease responds as well to these new therapies, revealing new unmet needs that are being tested with additional new therapies. Dr. Roufosse’s first patient has been helped greatly with biologics for almost 20 years now. [24:55] Dr. Roufosse speaks of more unmet treatment needs. Eosinophils are only a part of the picture. EoE is a complex disease about more than eosinophils. We need more understanding of what the key pathogenic events are across the range of eosinophil-related disorders to be able to identify new therapeutic targets. [26:00] With clinical trials, it can be difficult to find suitable endpoints for the trial and define the efficacy of a new treatment. When is the disease still active with treatment? When can we start decreasing the intensity of treatment? How long do we have to treat with these drugs? Many of these questions are still completely unanswered. [26:53] Over the past 25 years, the time to diagnosis has decreased. Dr. Roufosse rarely now has a patient referred to her that already has severe, irreversible damage. [27:21] How to score disease activity is an area where we still have a lot of work to do. [27:37] Medical codes are used to classify and group diseases for reporting statistical information. In the U.S., they are important for diagnostics and what treatments you get access to. In 2020, new codes (ICD-10) were approved for various subsets of eosinophilic diseases. [28:09] ICD-10 codes are used less in Belgium than in the U.S. but a disease does not “exist” if it doesn’t have a code. Without a code, there is no access to diagnostic tools or reimbursement for therapy for the disease. You need codes to justify hospitalization. C codes also allow Holly’s patients to receive feeding therapy. [30:43] To help patients and caregivers identify medical professionals offering care for eosinophil-associated diseases, APFED hosts a Specialist Finder on its website. It largely has clinicians in the U.S. You can access it at apfed.org/specialists. There is also a badge for specialists who are members of the International Eosinophil Society. [31:10] Dr. Roufosse suggests having handouts for patients listing patient associations and places to find information on their disease. Some people are more comfortable with something tangible and physical. Not everyone uses Google! Doctors need to use different means to share information on how to access specialists. [32:11] Policymakers are important in bringing together information to give access to proper care for these disorders. [33:56] Dr. Roufosse discusses unmet needs in research. We understand so little about these diseases, although great progress has been made in understanding that the eosinophil is a toxic cell that can cause damage and if you target those eosinophils, you are going to prevent some of that damage. We don’t yet have the full picture. [34:32] Some unmet needs are understanding what part of each of these disorders is influenced genetically or combines genetics with environmental triggers. What cells initiate the inflammatory process? What cells and mediators maintain the process? Which mediators should we target? How do we do it without compromising immunity? [35:12] It appears that targeting eosinophils in humans is innocuous, but what are they for? We are learning about what eosinophils are for in mice, but very little about what they’re for in humans. Are normal eosinophils irreplaceable or are there redundant functions with other cells? Some patients have high eosinophils without any illness. [35:46] Some patients have lower eosinophil counts than others and they have rapidly progressive cardiac damage. What characterizes a bad eosinophil? We don’t have the tools to recognize that, yet. We can’t predict which patients are going to require more aggressive therapy earlier in their disease course. That’s very important to research. [36:39] Dr. Roufosse recommends using the apfed.org website with its Specialist Finder and relevant patient resources. Awareness is the key to faster diagnosis, accessing treatment, and avoiding harmful treatment. [37:35] Ryan and Holly thank Dr. Roufosse for being on the podcast. Ryan shares the links including , , and links. Holly and Ryan thank APFED’s education partners, linked below. Publications discussed: Patient charter: Mentioned in This Episode: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , , and . Tweetables: “The International Eosinophil Society is a dynamic ... society whose main mission is to bring together clinicians, investigators, and researchers ... interested in eosinophils and eosinophilic disorders. ” — Florence Roufosse, MD, PhD “Transitioning from pediatric to adult care is typically an unmet need in eosinophilic esophagitis, which very commonly begins in childhood.” — Florence Roufosse, MD, PhD “The unmet need, in … diagnosis, is awareness. … There’s a saying that what you don’t know, you can’t diagnose. … Many physicians don’t know about these eosinophilic conditions. … Turn toward someone … who is more likely than you to know.” — Florence Roufosse, MD, PhD Featured speaker: Professor of Medicine, Internist, and Clinical Immunologist at , President, Dr. Florence Roufosse is a Professor of Medicine, Internist, and Clinical Immunologist at CUB-Hôpital Erasme, Brussels, and is President of the International Eosinophil Society. She is in charge of a specialized consultation dedicated to diagnosing and treating eosinophil-related conditions, that is integrated in the European Reference Network: EuroBloodNet. She also manages patients with systemic auto-immune and auto-inflammatory conditions. Besides these clinical activities, Dr. Roufosse leads translational research projects to improve the understanding and treatment of lymphocytic variant hypereosinophilic syndrome (HES) and participates in international research efforts to better delineate disease course and treatment responses of HES. She is involved in the design and conduct of international clinical trials evaluating the efficacy of novel treatment options in patients with HES and eosinophilic granulomatosis with polyangiitis (EGPA), as well as sub-studies that aim to identify biomarkers and/or disease variants predicting treatment responses.
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Community Perspective: Eosinophilic Duodenitis and National Eosinophil Awareness Week
05/14/2023
Community Perspective: Eosinophilic Duodenitis and National Eosinophil Awareness Week
Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Jess Seidel, a patient advocate impacted by eosinophilic duodenitis. In this episode, Ryan and Holly discuss with Jess her diagnosis and experience with EoD, formerly known as eosinophilic gastroenteritis (EGE), some of the other health issues she experienced, and what her family’s support means to her. Ryan and Jess discuss visiting Washington, D.C., as young patients, on a trip to encourage U.S. legislators to support legislation related to medical formula coverage and the establishment of National Eosinophil Awareness Week so more people would have awareness of and access to the care they need. They all discuss the effects that National Eosinophil Awareness Week has had on access to diagnosis and care. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [0:50] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic, eosinophilic duodenitis, or EoD (formerly referred to as eosinophilic gastroenteritis or EGE), and National Eosinophil Awareness Week. [1:27] Holly introduces Jess Seidel, a patient advocate impacted by EoD. [1:41] EoD is a condition that affects the digestive tract, caused by an increase of a type of white blood cell called eosinophils that causes inflammation. Jess was diagnosed with EoD when she was two years old. [2:30] Jess also had eosinophilic esophagitis and issues in the stomach, as well as the intestines. Her primary treatment was stopping food by mouth and using a feeding tube when she was seven years old. [3:11] Jess has early memories of hospital stays and doctor visits. An early memory that sticks out is trying to drink formula for lunch at school before getting a feeding tube. She notes that everyone was nice to her and curious about her drink. They asked her questions. [4:39] Jess’s younger brother was diagnosed with EoD when he was about seven years old. [4:48] Ryan’s older sister does not have an eosinophilic disorder. He speaks of how supportive she has always been of him and his needs. [5:28] Fortunately, Jess’s brother did not have the same intensity of issues as Jess. He didn’t need a feeding tube and his disease is under control at the moment. But there is something to be said for having somebody who just “gets it.” You don’t have to explain to them where you’re coming from. They just understand what you’re going through. [6:08] Ryan appreciates the annual APFED conference and hanging around people his age who have had similar experiences. [6:27] Holly is kind of jealous as she had an older brother who didn’t get it at all. He’s trying hard but he still struggles with it. He’s reading articles and learning more about why they have to pick certain restaurants. Holly enjoys working with people who have eosinophilic diseases. It’s therapeutic for her. [7:05] Jess is studying film and video production in college. Media has always been an escape for her. It allowed her to experience something different from what was going on in her life. But she always felt underrepresented in the media she consumed. She never saw well-rounded characters experiencing anything that she had. [8:14] When she got back into college and screenwriting and directing, she saw an opportunity not only to create more opportunities for escapism but also to champion more disability and chronic illness representation, both on the screen and behind the camera. [8:52] Holly and Ryan love that Jess is working advocacy into her studies and career path. Holly recently saw a medical drama that had a patient with a food impaction and she felt very seen. Patient advocacy is a huge part of APFED. [9:22] Ryan and Jess met at APFED conferences when Ryan was four or five but Ryan’s first memory of Jess was in 2007 in Washington, D.C. They had G-tubes and backpacks with pumps. They talked to legislators asking for help with formula coverage and the establishment of National Eosinophil Awareness Week. [10:43] Jess remembers the feeling of being in Washington, D.C. At age 11, she felt the gravity of the situation: how important it was that these legislators were listening and how important it was to get them to understand and pass medical formula coverage legislation so people could get the help they needed. It meant a lot to Jess. [11:40] Ryan was seven at the time. He was impressed by Jess as an older patient who clearly understood what they were doing in Washington, D.C. It was an inspiration to him, seeing someone who had these shared experiences with him, going out of the way to make sure more people could understand what patients are going through. [12:25] Jess points out that it’s such a rare disorder and at the time almost nobody knew anything about it. National Eosinophil Awareness Week allows us to put it in the forefront for a week and help amplify the voices of everybody that’s affected by it, from the patients to the families to the doctors working hard to try to treat it. [13:06] Jess has seen a huge uptick in awareness about eosinophilic disorders. When Jess got diagnosed at two, nobody knew what it was. She had to go to a specialist at a children’s hospital an hour from home to get the diagnosis. They went through doctors who told her parents they were overreacting or not being good parents by not making her eat. [13:39] The doctors didn’t know about eosinophilic disorders. There are more resources available now and it’s easier for people to access them. Jess started working with APFED at the beginning of its existence. Now, with a diagnosis, you can go to the internet and find great resources. [14:29] Ryan was diagnosed with EoE in 2002 when he was two. At first, the doctors said he was throwing up for attention. Today, the awareness of eosinophilic disorders like EoE has spread so much. We’re in a better place these days. [15:07] Holly’s journey was different, being diagnosed when older. Growing up, she and her mom were told they were crazy, or she was bulimic. Holly loves that there is now a dedicated week for eosinophil awareness. Patients can feel they have a community and be supported. [15:41] Jess’s condition varies from day to day or even hour to hour, affecting how she might be feeling. She can have great days and then days when she cannot function. She doesn't know what kind of day she’s going to have until she wakes. On a bad day, she’ll do what she needs to do to take care of herself and be kind to herself. [15:56] Since 2007, APFED has celebrated National Eosinophil Awareness Week during the third week of May. Resources for 2023 National Eosinophil Awareness Week, May 14th‒20th, may be found at . APFED currently has an awareness campaign running in New York, in Times Square, with a billboard raising awareness for eosinophilic esophagitis. [19:10] Jess thanks Ryan and Holly for having her on the Real Talk — Eosinophilic Diseases podcast. Jess says, if you’re dealing with an eosinophilic disorder, find a community to have people in your life who understand and support you. It is absolutely invaluable to have a support system and to know that you are not alone. Reach out. [20:02] Ryan and Holly thank Jess for taking the time to be on the podcast. Ryan shares resources including , , and . It’s all about raising awareness and finding a community of support. Holly thanks the education partners linked below. Mentioned in This Episode: APFED on , , , , Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of , , , and .
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Community Perspective: EGPA
04/25/2023
Community Perspective: EGPA
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Ashley Spencer, patient advocate, a young adult from Bristol, PA, living with Eosinophilic Granulomatosis with Polyangiitis (EGPA). In this episode, Ryan and Holly discuss with Ashley her history with EGPA, how she was diagnosed, and some things you can do to advocate for yourself and others if you are living with EGPA. She explains the chronic nature of the disease and the treatments that help her in the day-to-day management of EGPA. You will appreciate Ashley’s positive attitude and determination to improve the outcomes of people living with EGPA. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [0:50] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic: Eosinophilic Granulomatosis with Polyangiitis (EGPA) Today’s episode features the perspective of a patient living with EGPA. [1:52] Holly introduces Ashley Spencer, a young adult from Bristol, Pennsylvania, living with EGPA. [2:03] Ashley thanks Holly and Ryan for having her on the podcast. [2:19] Ashley says it is not a walk in the park living with EGPA. When Ashley was 16, she started displaying symptoms of EGPA. At the time, because of her age, doctors didn’t associate her symptoms with anything other than severe asthma. [2:45] Two years later Ashley developed sinus issues that required surgery. Every year she displayed more symptoms. [3:03] Ashley says EGPA has three stages and early diagnosis can halt its progress. [3:36] EGPA stands for Eosinophilic Granulomatosis with Polyangiitis. Eosinophils in the body are high, causing inflammation within the body including major organs. [4:01] Ashley had exercise-induced asthma. She played sports and danced, but all of a sudden, it went from exercise-induced asthma to severe asthma. She was admitted to the hospital for it and needed continuous albuterol treatments. From age 16 until now, Ashley has not been able to get off steroids, which can cause severe issues. [5:05] Ashley displayed sinusitis issues when she was 18. Within two years, she had four sinus surgeries in all eight of her sinus cavities for sinusitis and nasal polyps. [5:26] The polyps were starting to show eosinophilia but not enough for a full diagnosis. Because Ashley was moving from adolescence to adulthood, she had to be transitioned from doctors at Children’s Hospital Philadelphia to an adult doctor. Her family doctor told her she was getting worse. He sent her to National Jewish in Denver, Colorado. [6:12] Ashley checked into National Jewish Health for two weeks. Every day she saw doctors and had testing. Ashley was diagnosed with Churg-Strauss Syndrome, which is now known as Eosinophilic Granulomatosis with Polyangiitis (EGPA). [7:28] By the time Ashley got the diagnosis, she was in the last stage of EGPA, which is the vasculitic stage. [8:09] A common misconception about EGPA is that it doesn’t affect children and young adults. Another misconception is that EGPA patients may visually look healthy, similar to many autoimmune disease patients. EGPA affects the internal body. [9:18] Ashley’s lungs, sinuses, and her nervous system have been impacted. One morning she woke up and she was paralyzed from the waist down. This shut down her bladder function and she developed mononeuritis multiplex which caused severe peripheral neuropathy from her knees down. [9:48] Ashley was hospitalized for three weeks and then went to a rehab to relearn how to walk. Ashley worked with her urologist to get a medical device to signal when she needs to use the bathroom. [10:33] Ashley also has heart issues but if she stays on her daily maintenance medications, she does well. [11:09] Ashley talks about specialists she sees: a pulmonary doctor, an ear, nose, and throat specialist, a women’s healthcare team for bone health, a urologist, a neurologist, and an allergist and immunologist. [12:18] A good day for Ashley would be if she got out of bed, took a shower, and went to school. A bad day would be not being able to get out of bed and just staying in bed all day and sleeping. [13:17] Ashley and Holly discuss the “spoon theory.” You start the day with 10 spoons and each activity takes away one or more spoons. When your spoons are gone, you are done for the day. You don’t have more to give. [16:45] How you can help a friend with EGPA: Join a Facebook group for EGPA. Ashley shares a personal story of an online friend who became an in-life friend. She encourages listeners to explore Facebook groups related to eosinophilic diseases. [18:31] It’s hard for someonewith no experience with eosinophilic disorders to understand someone with EGPA. [20:33] There are situations you can explain that help your friends not living with eosinophilic diseases to better understand you. [21:41] Ashley has medication and a medical deviceto help her manage EGPA. [22:47] Ashley shares how her care has changed over the last ten years. When she started at the Cleveland Clinic, she went on a biologic to improve lung function that changed her life. She was able to work out again. Her stamina increased. It also helped a little bit with her neuropathy. [24:40] Ashley shares experiences with school and social activities with EGPA. She was in a college physical therapy program when her sinuses caused her to be admitted to the hospital. The doctors told her it was not feasible for her to continue to her senior year and she was heartbroken. She did not graduate or become a physical therapist. [26:23] Ashley’s career now is advocacy. She often speaks to new EGPA patients about the disease and treatment options. She also talks to allergy patients. Years ago, Ashley made national news by going into anaphylactic shock on a plane when flying to the Cleveland Clinic and a Cleveland Clinic doctor on the plane saved her life. [27:38] Ashley’s advice for traveling with EGPA is to wear medical identification jewelry. [30:03] Ashley refers to those living with EGPA as vasculitis warriors. She always invites them to connect with others on social media and to reach out if they need help. [30:58] Ryan shares the online resources to help with the day-to-day management of EGPA at apfed.org and apfed.org/connections. [31:28] Ryan and Holly thank Ashley for sharing her experience. Holly and Ryan thank APFED’s education partners, as well, linked below. Mentioned in This Episode: APFED on , , , , This episode of APFED’s podcast is brought to you thanks to the support of , , , , , and . Tweetables: “To be real with you, it’s not a walk in the park living with EGPA, let alone being diagnosed with EGPA.” — Ashley “When I was 16, I started displaying symptoms of EGPA. But at the time, because of my age, they didn’t associate it with anything other than just severe asthma. And then, two years later, I developed the sinus issue.” — Ashley “By the time I got the diagnosis, I was in the last stage [of EGPA], which is the vasculitic stage. So it was very sad.” — Ashley “It’s not really seen in youth patients and young adults.” — Ashley
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Community Perspective: EoE and Unsedated Transnasal Endoscopy
03/17/2023
Community Perspective: EoE and Unsedated Transnasal Endoscopy
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Eliana, a child living with EoE, about her experiences with endoscopies and unsedated transnasal endoscopies (TNE). In this episode, Ryan and Holly discuss with Eliana her history with EoE, her experience with an elemental diet, and the foods she is able to eat. They also discuss her experiences with endoscopies, including TNEs. You will enjoy her positive attitude and bravery. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [0:57] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic: a follow-up to the recent episode with Dr. Joel Friedlander on unsedated or transnasal endoscopy. Today’s episode features a child living with eosinophilic esophagitis who has undergone several unsedated endoscopies, several of them with Dr. Joel Friedlander. [1:36] Holly introduces 10-year-old Eliana. During Holly’s time at Children’s Hospital Colorado, Holly had the opportunity to meet Eliana and her Mom. [1:49] Eliana thanks Holly and Ryan for having her on the podcast. [2:02] Eliana was diagnosed with EoE and food allergies at 18 months. She has a very restricted diet. Before her fourth birthday, she went on an elemental diet. This means she drinks a medical formula that provides nutrition. [2:41] Elemental means you can’t have foods, so you drink a specialized formula. Eliana can now tolerate approximately 12 foods in addition to the elemental formula. [3:30] Eliana’s safe foods include turkey, chicken, wheat, rice, corn, fish, flour, and natural flavors. Her favorite food is crispy-skin chicken. Her grandpa makes it extra-extra crispy for her! She has learned that one type of food can be five or six different foods if you get creative. [4:29] Eliana likes pan-seared salmon with oil and salt. She also enjoys when her family roasts or smokes a turkey. [4:44] Holly met Eliana when she was 18 months old. They didn’t know then what foods were her triggers. Eliana wasn’t interested in eating, which was a sign that something could be wrong. Now she eats foods with different textures. Her parents and brother help prepare food in different ways for her and her palate has expanded. [5:25] Since COVID-19 happened, Eliana and her family stayed home and cooked a lot. Sometimes Eliana enjoys cooking, but usually her brother or her dad cooks. [5:51] Because she was so young when she was diagnosed with EoE and food allergies, Eliana doesn’t remember the foods she would eat before she was diagnosed. [6:01] Eliana avoids the foods that she knows trigger symptoms. [6:23] Eliana is always excited when she is able to add new foods. [6:54] Ryan explains the endoscopy and transnasal endoscopy procedures and invites listeners to check out Episode 19 with Dr. Joel Friedlander. [7:58] Eliana has had 25 endoscopies, including traditional sedated procedures and unsedated TNEs. Twelve or more were TNEs. Eliana thinks the TNEs are way easier. She says it’s great to have a new way to do it. [8:29] Eliana was five when she had her first TNE following the introduction of corn, which was one of her first foods. She is always excited to get a new food added back to her diet. Her first TNEs were with Dr. Joel Friedlander. Dr. Friedlander doesn’t do them at Children’s Hospital Colorado anymore so Eliana has a new doctor now. [9:03] Eliana helped other doctors as they learned from Dr. Friedlander how to do the TNE procedure. She always got nervous when a new doctor would insert the tube. But she was brave and let them learn. [9:44] Eliana tells about her experiences with TNEs versus traditional endoscopies. The TNE is much faster and you don’t need anesthesia. [10:47] Eliana tells more about the TNE procedure. It starts like a normal check-up where you weigh yourself and they check your vitals and talk with you. They give you a big virtual reality setup and test it. You get to pick a show to watch. Then you head over to the procedure room and sit in a chair. Then they give you a nasal spray to numb your nasal passages. Eliana says it tastes like iron. [11:22] They send a tube up your nose and down your esophagus, which Eliana says feels big and you have to swallow it. It feels like choking. Then they take the biopsies and take the tube out. It takes about 10 minutes. She enjoys having hot tea or ice cream after the TNE. [12:00] With the virtual reality goggles, squishies, and stress toys, Eliana says it goes by faster than you think. [12:31] When the doctor takes the biopsies, Eliana says it’s quick and it feels like a scraping in your throat, like eating a cracker that gets a little stuck. Eliana asks for extra water when the doctor flushes her throat with water. It feels cold and fresh. [13:11] When she has a TNE, Eliana brings her own stress ball. They have stress balls but Eliana likes having hers. She also shares that it’s OK to ask for water or to turn up the volume. And she says taking deep breaths is helpful. [13:48] Eliana shares how watching a show on virtual reality goggles makes it fun. Eliana definitely prefers the TNEs to the sedated endoscopies. [14:29] Holly thanks Eliana for sharing her experiences to help others. [14:42] Eliana knows many people are nervous to get a TNE but says once you have your first one you’ll see it is much better than getting the anesthesia and waking up grumpy or tired. [15:05] Ryan thanks Eliana for coming on the show. [15:23] Ryan shares the APFED links shown below to find resources and specialists who treat eosinophilic esophagitis. [15:48] Holly thanks Eliana for sharing with us and being an inspiration to others. Holly hopes that when other patients who have EoE hear Eliana talk about her experience that they’ll be braver and more willing to try this out and that it can help them add more foods more quickly into their diet. APFED says “Thank you” to all the patients, families, and team members who have helped make unsedated endoscopy and new technologies possible. Mentioned in This Episode: APFED on , , , , Tweetables: “I was diagnosed at 18 months and I have EoE and lots of food allergies, so I have a very limited diet, and before my fourth birthday, I went elemental. … I still do drink a formula.” — Eliana “[Elemental] means you can’t have foods so you’re not eating any foods … only drinking the formula.” — Eliana “It takes a really long time to add in new foods because most of the time it doesn’t work out. … I have 12 foods or more now.” — Eliana “I like pan-seared salmon with oil and salt. Then we roast turkey and my brother smokes turkey sometimes.” — Eliana “[The first time I had a TNE] I was five and I was trying corn. Corn was one of my first foods.” — Eliana “I know plenty of people who are nervous to do [the TNE], but once you do your first one, it’s like, this is way better than the smelly anesthesia and waking up grumpy or tired!” — Eliana
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Pediatric Unsedated Endoscopy: Diagnostic Tool Use and Development
02/23/2023
Pediatric Unsedated Endoscopy: Diagnostic Tool Use and Development
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Joel Friedlander, DO, about the development and use of transnasal endoscopy (TNE), also known as unsedated endoscopy. Dr. Joel Friedlander is a co-founder of EvoEndo and a pioneer of pediatric transnasal endoscopy. Previously, he was the Gastroenterology lead of the Aerodigestive Program at Children’s Hospital Colorado and a bioethics consultant. In this episode, Ryan and Holly discuss with Dr. Friedlander the background and history of unsedated endoscopy. Dr. Friedlander talks about the team at Children’s Hospital Colorado who worked with him on the technology and the procedure. Dr. Friedlander first noticed a similar procedure being used by ENT physicians and speech and language pathologists and wanted to use it for pediatric eosinophilic esophagitis patients. He explains the research they did\. Now Dr. Friedlander and some of his colleagues from the multidisciplinary team at Children’s Hospital Colorado have co-founded a company to promote and spread the use of this technology around the country. Listen in for more information about the use of unsedated endoscopy for EoE. Dr. Joel Friedlander would like to extend special thanks to the individuals and groups who contributed to the advancement of the unsedated transnasal endoscopy for eosinophilic esophagitis. This includes Dr. Jeremy Prager, Dr. Robin Deterding, Dr. Emily DeBoer, the GI and AeroDigestive teams at Children’s Hospital Colorado, APFED, the Bunning Family, the Meister Family, CEGIR, CURED, the Cherry Family, the Friedlander Family, and the Smith Family. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [1:07] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic: a new diagnostic tool for EoE: transnasal endoscopy, also known as TNE. Holly introduces the episode guest, Dr. Joel Friedlander. [1:50] During her time working at Children’s Hospital Colorado, Holly enjoyed collaborating with Dr. Friedlander to support children living with eosinophilic esophagitis. [2:22] At Children’s Hospital Colorado, Dr. Friedlander was part of a multidisciplinary program of ENT physicians, pulmonary physicians, a gastroenterology physician, feeding and speech therapists, occupational therapists, and nutritionists, to work with children who had upper airway disorders, or eosinophilic disorders of the upper GI tract. [2:44] Dr. Friedlander noticed that their ENT colleagues could look in individuals’ throats every day, without anesthesia, using tiny scopes, and speech and language pathologists would use little cameras to look in the back of people’s throats to watch swallowing. [3:00] The multidisciplinary team at Children’s Hospital Colorado wanted the same technology in gastroenterology. They put together some research, which led to a startup company. Dr. Friedlander is the Chief Medical Officer of the company, trying to bring unsedated endoscopic technology to patients around the world. [3:26] Unsedated endoscopy is especially important to patients with eosinophilic disorders that require numerous endoscopies with anesthesia. Doctors don’t want to have their patients go to sleep unless they have to. Although anesthesia is relatively safe, it’s not without potential risks, it drives up the cost of care, and it is inefficient. [3:57] Dr. Friedlander’s research was how to bring the unsedated endoscopic technologies their colleagues had to gastroenterology patients, specifically for eosinophilic disorders. Holly Knotowicz, as a person who has EoE and as a medical provider, loves to hear about creative ways to take care of these patients. [4:47] Holly knows that seeing doctors is scary, but she loved that Dr. Friedlander always had a joke for his pediatric patients. Holly asked Dr. Friedlander for a joke today and he provided a couple of his oldies but goodies. [5:45] One of the most important parts of doing any awake procedure with patients is having a relationship. It is a medical procedure. With this technology, there are different styles. You develop a style as a physician; Dr. Friedlander tells jokes. You also have to know your patient. Every patient is different. [7:35] Dr. Friedlander researched the use of unsedated endoscopic technology to remove sedation risks to pediatric patients, reduce their parents’ fears, make faster and safer diagnoses, optimize the patient’s experience, and lower the cost of care. [8:32] As Dr. Friedlander’s group was developing the technology for TNE, they learned that adult gastroenterologists had tried to introduce it over 20 years ago but it never took up much traction in the U.S. When they started doing it in pediatrics, initially they started using the smallest scopes available, but the little scopes were breaking. [10:01] They went to the hospital asking for another scope to make the technique even better. Originally, an ENT physician would do the procedure through the nose and a gastroenterologist would go into the esophagus, requiring two physicians for a short procedure. So the ENT physician taught the gastroenterologist the nasal procedure. [10:24] The other problem was how to keep a child calm for the four-minute procedure. They tried using video goggles and then moved to VR. After working through about 1,000 procedures in Colorado, they felt they had the right flow for the procedure and patient experience for the children, including Dr. Fiedlander’s jokes. [11:28] Some kids like jokes. Some kids like VR. The team had to choose which kids were the right fit for unsedated TNE. Unsedated TNE works for the vast majority of kids but it’s not for everyone. About five to 10% think it’s easy, about five to 10% say it’s not for them, and the rest can manage the few minutes it takes, vs. anesthesia. [13:30] A typical endoscope used for sedated upper GI tract endoscopy is nine or 10 mm in diameter. An adult transnasal scope (a baby scope for sleeping babies), or noodle scope, is about 5‒6 mm. A transnasal scope for pediatric TNE is 3‒4 mm, like a piece of spaghetti. The different scopes have different features. [14:54] The ENT physician of the group, Dr. Jeremy Prager, worked with Dr. Friedlander to teach him the TNE technique. Dr. Robin Deterding, Chief of Pulmonology at Children’s Hospital Colorado fostered the development of the technology. Dr. Emily DeBoer also collaborated on the initial project. [15:34] Dr. Friedlander, Dr. Prager, Dr. Deterding, and Dr. DeBoer are the co-founders of the company where Dr. Friedlander currently works. They all came together to figure out the best way to bring this unsedated technology to patients, through new scopes and constantly refining the techniques. [15:49] Dr. DeBoer developed 3D models for training doctors who had never used a 3 mm scope or navigated a child’s nasal passage. It takes time for a doctor to learn the technique and get comfortable with the smaller scopes. [17:26] The typical procedure starts with the patient having a conversation with the doctor who is doing it. The doctor will also talk during the procedure. If VR is used, the doctor orients the patient on how to use it and picks a program. There is the orientation to the scope and the procedure and how the patient may feel during and after it. [19:54] Then there is an orientation to the medication administration, including numbing spray in the nose. Dr. Friedlander asks patients ahead of time to practice nasal spray at home to see how it feels. [21:13] Some kids do well with the procedure and others do not. Dr. Friedlander has patients practice slow, deep breaths to help them relax if they start to feel uncomfortable. He tells patients not to hold their breath or pant like a dog. If they take slow, deep breaths and watch the show, it will be over before they know it. [22:21] After preparation, they go to the procedure room. They check who the patient is and their birthday. They use numbing spray on the nose (or throat), put on the VR goggles, have the parent sit behind if the child needs their handheld, turn on the show, turn down the lights, take the camera scope, lubricate it, and do the procedure. [23:10] The scope goes in the nose and down the back of the throat. Dr. Friedlander may ask the patient to swallow it like spaghetti. With the scope down, the doctor takes a few biopsies and removes the scope. The patient may feel it a little bit, based on how sensitive they are. [23:29] Afterward, Dr. Friedlander brings out an ice pop or a slushie to soothe the throat. He recommends the child takes little sips because their throat may still be a little numb. As it wakes up, they can drink more. He recommends eating slowly for the rest of the day. [24:21] As the scope may look in the stomach, patients are to take no food or drink for four hours before the procedure. If the scope will only look at the esophagus, patients are to take no food or drink for two hours before the procedure. Because the scope goes down the back of the throat, there is a slight risk of throwing up. The time for the procedure varies per doctor and location. [25:32] For EoE, usually distal and proximal biopsies are taken, between two and four biopsies each from the bottom and the top of the esophagus, depending on the physician. If going to the stomach or the small intestine, additional biopsies would be taken from those areas. [26:18] Your physician determines how frequently to do this procedure. Based on current data, it shouldn’t be done any sooner than six to eight weeks. With anesthesia involved, it wouldn’t be done that frequently because of the cost. With unsedated technologies, six weeks is OK. Ongoing research may lead to shorter intervals. [27:30] The usual biopsy frequency for patients with EoE is between three to six months depending on your physician, what diet you’re on, and your therapy. If your eosinophilic disorders are stable, and you’re doing well, it might be just once every two years. There is a lot of variation depending on the institution and the physician. [27:48] Before undergoing unsedated TNE, the child or adult needs to go through COVID-19 testing as the scope is going through the nose and there would be a risk of spreading COVID-19 if infected. Some kids find the COVID-19 test to be worse than the TNE. [28:51] TNE can also be done with sedation, so Dr. Friedlander refers to it as unsedated TNE. Dr. Friedlander discusses the benefits of unsedated TNE: 1.) no sedation, 2.) possible increased frequency of endoscopy, depending on your physician, 3.) increased efficiency with less downtime, and 4.) decreased cost, depending on your insurance. [30:37] When the fear and cost of anesthesia are out of the equation, the question is, how often do you need an endoscopy? Doctors have to be thoughtful about this. Just because you can scope doesn’t mean everybody needs a scope. But you can scope to see if your medication worked. It opens up opportunities for other diagnoses. [32:00] A patient with trouble swallowing could have EoE or they could have reflux esophagitis, which is treated very differently from an eosinophilic disorder. An unsedated TNE could show which esophagitis the patient has. [33:17] When a physician is getting started with unsedated TNE, older patients are the easiest because the anatomy is bigger and it’s easier to talk an older patient through it if the procedure is not going well. Some patients have been to ENT doctors and had good experiences with nasal tubes, they make good patients for unsedated TNE. [34:31] Older patients routinely calm down easily. A child (or adult) who screams for minutes after a blood draw is probably not the best patient for an unsedated TNE procedure. The ideal patient is someone the physician can talk to and calm down if they get upset, and patients that are used to nasal medications. [35:06] Until patients try the procedure, it’s not known how a patient will do. With kids under age five, it’s hard to use VR or talk to them. Some kids under five can do it. It’s about a 50-50 chance, compared to over 90% success with older kids. [36:23] For physicians first starting to perform unsedated TNE, 5-to-8-year-olds are more challenging than 9-year-olds and up. Even so, some teenagers are not the right candidates for unsedated TNE. Dr. Friedlander always recommends they try it. Sedated endoscopy requires a whole day off work or school, and unsedated TNE can be done in minutes. [37:38] Adult TNE has been around for years. Most adult centers have transnasal endoscopes but a lot of physicians haven’t been trained in TNE. Some use TNE in the high-risk adult population with significant heart or lung disease and for adult patients who don’t have a driver to take them home after sedation. [38:38] More adult physicians working with eosinophilic disorders are asking how they can offer unsedated TNE to their patients. Adult transnasal endoscopes are thicker than pediatric scopes. Dr. Friedman’s company has longer 3 mm transnasal endoscopes for more comfortable adult use. [39:29] Risks with unsedated TNE may include a sore or swollen nose, sore throat, sore chest, and a little bleeding from the biopsy sites. One to two percent may have some spitting up or throwing up. It’s a medical test. It may go well, it may not go well; probably it’s somewhere in the middle. It’s five to ten minutes and you’re back to school or work. [40:19] There are the same risks as other endoscopies. A scope can go where it’s not supposed to. That seems to occur less than with a regular scope because you may not be going as far and the patient isn’t asleep and can report if something hurts. [41:00] Unsedated endoscopy is a very important tool for a gastroenterologist to have. It’s not a replacement for all endoscopies. As of now, dilations are not routinely done unsedated. Transnasal endoscopes are not designed or sized for therapeutic use. They are for diagnosis and evaluation. [43:27] Holly recalls a mutual patient that couldn’t tolerate unsedated TNE but had a gastric tube and tolerated a trans-gastric endoscopy. Dr. Friedlander researched it and found that the TNE scope fits well through a gastric tube. It takes additional manipulation to use it in that manner. [45:50] If you are interested in trans-gastric endoscopy, discuss it with your physician. [46:40] Concerning insurance for unsedated TNE, the first step is to talk to your physician and care team. If they agree the procedure is appropriate, you can discuss the cost estimate with your insurance provider. [48:41] More and more centers around the country are doing unsedated TNE. Some have websites about it. Google transnasal endoscopy in your region or city and you’ll find websites. APFED is also working on adding information to its Specialist Finder to show these centers. Most importantly, ask your physician about it. [49:40] Holly thanks Dr. Friedlander for sharing his expertise. [49:50] Dr. Friedlander says he is passionate about getting this technology out to the right patients. It’s a good option for a large majority but it’s not for everybody. Know that this is an option. Ask your physicians about this option. Figure out if it’s the best option for you and your treatment plan. Physicians take their cues from their patients. [50:34] Dr. Friedlander thanks Ryan and Holly for allowing him to speak about unsedated TNE and everyone who allowed all this technology to get to where it is, from adult doctors working on it 20 years ago, pediatric doctors working on it now, the eosinophilic disorders community, and APFED. This is an important option for patients. [50:53] Dr. Friedlander asks you to talk to people about it. Let people know about it. It’s an important technology. It’s not for everybody but it’s for a lot of people. [51:08] Ryan shares the APFED links shown below to find resources and specialists who treat eosinophilic esophagitis and to make connections with others impacted by eosinophilic diseases by joining APFED’s online community. APFED says “Thank you” to all the patients, families, and team members who have helped make unsedated endoscopy and new technologies possible. Mentioned in This Episode: APFED on , , , , This episode is brought to you thanks to the support of our Education Partners , , , , and . Tweetables: “If our ENT colleagues could do [unsedated endoscopy] and if our pulmonology colleagues could do [unsedated endoscopy], we want to make sure that our gastroenterology colleagues have these same options for our patients.” — Dr. Joel Friedlander “As much as [anesthesia] scare[s] our patients, it also scares us as providers and doctors, because we don’t want to have our patients go to sleep unless we really need to because, although anesthesia is relatively safe, it’s not without its potential risks.” — Dr. Joel Friedlander “When a physician is first getting started [with unsedated TNE], usually an older patient is better because the anatomy is bigger. It’s easier to talk a patient through it if they’re not doing as well.” — Dr. Joel Friedlander “[Unsedated TNE] is an important option for our patients. … Talk to people about it. Let people know about it. It’s a really important technology. Even if not for everybody, it’s for a lot of people.” — Dr. Joel Friedlander
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Transition of Care from Pediatric to Adult Providers
01/18/2023
Transition of Care from Pediatric to Adult Providers
Description: Host Ryan Piansky is joined by co-host Mary Jo Strobel, APFED’s Executive Director, to talk with guest, Girish Hiremath, MD, MPH, about the transition of care for people living with eosinophilic disorders from pediatric to adult providers. Dr. Hiremath is a pediatric gastroenterologist at Monroe Carell Jr. Children’s Hospital at Vanderbilt in Tennessee. His clinical practice focuses on pediatric patients with eosinophilic gastrointestinal disorders and his research concentrates on the epidemiology, diagnosis, and optimal management strategies to advance clinical outcomes in individuals affected by eosinophilic gastrointestinal diseases, in general, and eosinophilic esophagitis, in particular. In this episode, Ryan and Mary Jo discuss with Dr. Hiremath transition in health care from a pediatric to adult setting, his recently, published research on transition of care, and his interdisciplinary research program at Vanderbilt. Strategies to help facilitate transition and ages to do so, common barriers, and teaching children skills to manage their health are also discussed. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [1:10] Ryan welcomes co-host Mary Jo Strobel. Mary Jo introduces the topic: transition of care from pediatric to adult providers, and the episode guest, Dr. Girish Hiremath. Mary Jo welcomes Dr. Hiremath to the podcast. [2:33] After medical school in India, Dr. Hiremath served in the Indian Navy. Later, he traveled to the U.S. to pursue a Master’s in Public Health at Johns Hopkins. He completed his pediatric residency at INOVA Fairfax Hospital for Children in Virginia and his pediatric GI fellowship at Texas Children’s Hospital, Baylor College of Medicine. [3:03] Dr. Hiremath joined Vanderbilt in 2015. He has taken care of numerous children with gastrointestinal problems. He has also had the unique opportunity to focus on eosinophilic gastrointestinal diseases (EGIDs) and build a multi-disciplinary EGID clinic to provide evidence-based care to pediatric EGID patients, and he developed an interdisciplinary research program. [4:03] Pediatric gastroenterologists will typically treat patients from newborn up to age 18 but there is some variability. Some facilities will treat patients of up to 22 years. The pediatric healthcare provider will look for the right time to transition the pediatric patient to an adult healthcare provider, based on the patient’s readiness and maturity. [4:44] The pediatric healthcare provider will assess if the patient is stable to transition to an adult healthcare provider. If the patient is not doing well from a disease standpoint, it may not be the time to transition this patient. The provider will hold on, stabilize the patient and get them on a good trajectory to transition to an adult healthcare provider. [5:41] Chronic diseases, such as EGIDs, are being identified early in life, in the pediatric age group. Many chronic conditions do not have a definitive cure. Pediatric patients with chronic disease carry their disease into adulthood. The transition of care is very important so they continue to receive due care and guidance to manage their condition. [6:17] The National Alliance to Advance Adolescent Health describes transition of care as the process of moving from a child- or family-centered model of healthcare to an adult- or patient-centered model of healthcare, with or without transferring to a new clinician. It involves planning, transfer, and integration into adult-centered healthcare. [6:41] A successful healthcare transition program will involve a flow of information through multiple stakeholders. The most important stakeholder is the patient on the verge of adulthood. Some other stakeholders are the parents, patient’s caregivers, healthcare providers, and patient advocacy groups, which play a big role in education. [7:20] A transition program can be considered a success if it can improve the ability of the youth and young adults to manage their healthcare and effectively use health services. It’s an organized process with an emphasis on getting the patients integrated into adult-centered healthcare from child/parent-centered healthcare. [8:26] In April 2022, Dr. Hiremath contributed to a publication on transition of care for patients with EGID. The co-authors were a team of experts in EGIDs, including pediatric gastroenterologists, adult gastroenterologists, allergists and immunologists, and experts from Europe and the U.S. on transition of care. It was a great team effort. [9:11] They reviewed data from other chronic conditions such as inflammatory bowel disease and asthma, where relatively more research has been done on transition of care from pediatric-based to adult-based healthcare. Like EGIDs, these conditions can be debilitating and require long-term therapy and office-based assessments and testing. [9:40] Understanding approaches used for other medical conditions to transition care can help the EGID field identify opportunities for smoother transfer of care. They found that from the patients’ perspective, there is a lack of awareness, and suboptimal adherence and compliance to medical therapies, one of the critical challenges that have been well-documented in the field. [10:02] Factors that contribute to these problems are the patients’ young ages and their lack of understanding about the disease’s activity status. For example, there is sometimes a perceived lack of benefit of medication when a patient is feeling well. That age group also exhibits risk-taking behaviors. Plus, education about insurance coverage is helpful. [10:44] All these factors contribute to understanding how to make transition of care more efficient. There are health-system-related issues, too. The providers have a lack of time to focus on the transition of care and education related to that. There is not enough institutional support. There is little reimbursement for services provided. [11:17] These are barriers that have been well-described for other chronic conditions that also apply to EGID patients. [11:40] Ideally, transition of care of EGID patients should focus on the continuity of care through a shared decision-making process. [11:55] It can be helpful to allow adolescents to be independent in care management decisions and to create a comfortable and supportive environment for transitioning to adult care. [12:19] The research team also felt that the transition programs for EGID should be a continuing process that facilitates ongoing quality improvement and learning for all stakeholders. [12:39] Dr. Hiremath and his team were surprised by how little attention has been paid to the transition of care for young EGID patients. Some patients feel good and are not convinced that EoE is a chronic, progressive disease so they do not think much about continued care in their transition to adulthood. There are also provider gaps. [13:17] The disease process of EoE is not fully understood. Other chronic diseases have been studied longer and the disease process is better known. This highlights a great opportunity for researchers to systematically study transition of care and make important contributions to the field. [14:34] There are differences between working with a pediatric doctor and an adult provider. Pediatric providers are part of the family-centered care environment where the patient, parents, and providers are engaged in creating a treatment plan. Adult providers are part of the patient-centered care model, interacting directly with patients. [15:16] EoE presents differently among different age groups. Pediatric providers take care of EoE patients in the inflammatory phase. The adult providers will often see EoE patients when they present with complications such as strictures or food impactions. [15:51] Ryan recalls how, as a pediatric patient, his parents were involved in his care and also expected him to be involved and to help make decisions about treatments. [16:47] In his clinical practice, Dr. Hiremath initiates the process of transition of care when a patient is 12 or 13 years old. He starts with a conversation and introduces the concept of getting the child involved in the decision-making process about their ongoing treatment, changes in treatment, and when to do an endoscopy. He encourages the child to participate. [17:27] Dr. Hiremath encourages patients to educate themselves on the disease. Vanderbilt has the EoE Education Clinic to educate parents and patients. The transition of care is a part of that discussion, about transitioning into adulthood and having an adult healthcare provider. [18:11] Parents need to research adult gastroenterologists in their area who will be able to assume care of their adolescent child when they are ready to transition. This involves logistics such as travel and insurance coverage. Giving parents time to think through the issues will make the process more seamless. [19:19] A child’s doctor may be able to recommend an adult provider. In his practice, Dr. Hiremath makes referrals to EoE gastroenterologists within the Vanderbilt system for a seamless transition.[21:15] The goal is a seamless transition from pediatric to adult care. Unfortunately, there’s no single model program that fits all clinics and patients. Structured transition models improve treatment plan adherence and chronic disease control. However, for EGID patients, a diverse group of providers is involved and they all play a critical role. [22:00] With such a variety of providers, it’s hard to have one standard transition model but there is a specialized-disease-based approach that focuses on engaging adolescent EGID patients and their caregivers, and the stakeholders can facilitate the progression of that care. [22:18] This approach is often very personnel-heavy. It has to be tailored to the needs of the specific institutions, and it requires considerable resources for implementation and delivery. It cannot be translated from Institution “A” to Institution “B.” Each provider at the institution has to assess what they can offer, can afford, and what is most efficient. [23:33] Dr. Hiremath tells how he introduces the topic of transition of care with the intent to give the parents and the patient enough time to think through the process of finding an adult provider without being rushed and educate themselves on what the options are. [26:29] Transitioning from a pediatric provider to an adult provider is an important period. A patient who feels good may think, “I’ve conquered EoE,” ignoring that it’s a chronic progressive disease. Or it may be difficult to locate an adult gastroenterologist who treats EoE patients. These factors contribute to a loss of follow-up. [27:55] Dr. Hiremath explains some of the concerns he hears from patients transitioning to adult care. They have questions about who to call for prescription refills and to set up their next endoscopy. As they turn 18, they are quite knowledgeable about managing their disease but they need to know a lot more about the logistics of the transition. [29:11] There is a limited understanding of the differences between symptoms, diagnostic testing, and treatment in children versus adult patients. In the adult world, there are limited allergists and immunologists who focus on EGIDs. There are fewer adult gastroenterologists who focus on EGIDs. [29:44] There’s a lack of training in transitional care and there are very few transitional programs. The electronic health record platforms of the two institutions may not talk to each other. Information can drop between the cracks. There is limited funding for infrastructure, educational materials, or administrative support for a transition program. [30:38] In the U.S., the patient’s insurance plays an important role in continued healthcare, specifically for EGID-related care. In some cases, it determines who the patient gets to see, how often they can receive procedures, and what medications and doses are covered. The kind of insurance can dictate the depth of care in the U.S. [31:39] EGIDs and EoE are chronic, progressive diseases. They are here to stay for a long time and they advance slowly but surely. If medications or treatments are stopped, the patient is at risk of developing complications. In EoE, people with poorly-controlled inflammation are at higher risk of complications. [32:18] People who are not adherent to their treatment plan are at a higher risk to develop complications, such as strictures or food impactions, requiring urgent or emergent endoscopy. Patients who have inflammation that is not well-controlled tend to withdraw from social circles, and avoid eating with friends. This affects emotional well-being. [33:53] Dr. Hiremath emphasizes again that EGIDs are chronic, progressive diseases. There will be periods where a patient will be feeling great and asymptomatic or will be compensating for their symptoms. The key is to control inflammation and minimize the future risk of complications. This requires long-term medical treatment. [34:20] Prepare early to transition to adult care. The child doesn’t have to know every medication, dose, and frequency, but start by explaining to the child about the medication they are taking. Over time, the patient will take ownership. Dr. Hiremath talks to both his patients and their parents. [36:10] Mary Jo thanks Dr. Hiremath for talking about transition of care and participating in the podcast and she asks Dr. Hiremath about additional resources for patients. [36:21] Online resources Dr. Hiremath recommends include GotTransition.org, The American Academy of Pediatrics, and sites for other chronic diseases that have information on the transition of care, such as Crohn’s & Colitis Foundation. [37:58] Ryan shares the APFED links shown below to find resources and specialists who treat eosinophilic-related diseases and to make connections with others impacted with eosinophilic diseases by joining APFED’s online community. [38:35] Ryan thanks Dr. Hiremath for sharing his research and experiences. Mentioned in This Episode: APFED on , , , , by Girish Hiremath, Adrian Chapa-Rodriguez, David A. Katzka, Jonathan M. Spergel, Benjamin Gold, Albert J. Bredenoord, Evan S. Dellon, Jeannie Huang, and Sandeep K. Gupta This episode is brought to you thanks to the support of our Education Partners , , , , and . Tweetables: “There’s a lot of variability here. Typically, pediatric gastroenterologists take care of newborns to children up to 18 years of age. Having said that, that’s not etched in stone. … It’s mostly patient-related factors.” — Girish Hiremath, MD, MPH “More and more chronic diseases, such as EGIDs, are being identified early in life, in the pediatric age group. Unfortunately, many of these chronic conditions do not have a definitive cure at this time.” — Girish Hiremath, MD, MPH “Unfortunately, there’s no single standard model that fits all transition programs. Structured transition models have been shown to improve medical treatment plan adherence and disease control.” — Girish Hiremath, MD, MPH “Efforts are needed to understand what kind of model would be optimal or most efficient for EGID patients.” — Girish Hiremath, MD, MPH “At the end of the day, it’s their health that they are responsible for.” — Girish Hiremath, MD, MPH “Maybe we can venture out into those [social media] platforms and capture a young audience so that we’re able to reach them in the language that they speak and connect with them.” — Girish Hiremath, MD, MPH
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