Community Conversation: EoE

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 Science Advisory Council, interview Phillip Arceneaux, PhD, on his journey with EoE and balancing his career.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship 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 this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

 

[1:12] Holly introduces today’s topic. It’s May, and each year in May, there are several awareness observances for eosinophilic-associated diseases, including National Eosinophil Awareness Week, World Eosinophilic Diseases Day, and World EoE Day.

 

[1:29] Throughout May, APFED is sharing stories from individuals and families living with eosinophil-associated diseases to highlight the impact of these chronic conditions.

 

[1:38] Ryan says, Today, we’ll be discussing eosinophilic esophagitis (EoE). EoE is a chronic allergic inflammatory disease of the esophagus. It occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable.

 

[1:56] Holly introduces today’s guest, Dr. Phillip Arceneaux, a patient advocate living with EoE since 2019.

 

[2:18] Phil is 35. He was born and raised in Lafayette, Louisiana. He received his undergraduate degree there. He worked at the U.S. Naval Academy in Annapolis, Maryland. Then he worked at the University of Oregon.

 

[2:38] Phil moved to Florida and did his Ph.D. in Mass Communication at the University of Florida. Since 2020, he has been based out of the Cincinnati area, working at Miami University of Ohio.

 

[3:05] Phil was diagnosed with EoE in March of 2019, while finishing his degree at UF.

 

[3:12] Phil was eating dinner with his girlfriend. He took a bite of a roast beef sandwich, and it didn’t go down smoothly, it became impacted. 

 

[3:56] Phil thought he had food stuck in his windpipe. He was running around banging his chest. He calmed down and was able to get some of the food out, and he was breathing again.

 

[4:12] Phil thought he was fine. He quickly realized he wasn’t. He still had a partial impaction. He didn’t know what was going on in his chest. He spent about 30 minutes moving around, coughing, and trying to get his chest to feel right.

 

[4:44] After about an hour, Phil decided to go to the ER. His girlfriend insisted on driving him to the hospital. It was spring break, so the ER was not busy. It still took a couple of hours to be seen and treated.

 

[5:25] The doctors assessed him. They gave him medicine to induce vomiting. About 12 hours after the initial choking, his impaction cleared. They kept him overnight and gave him an endoscopy in the morning to check his esophagus and take biopsies.

 

[6:31] Phil was in the ER for four to six hours before anyone told him what they thought he had. Then the ER doctor told him he was 95% certain Phil had eosinophilic esophagitis. Phil had never heard of it.

 

[7:04] The ER doctor gave Phil a rundown of EoE. He said Phil would have an endoscopy, and then he would be referred to a GI and set up for treatment. The doctor said he couldn’t confirm it before the endoscopy, but he thought it was EoE.

 

[7:31] Ryan says he’s talked to people who have had months-long processes of getting their diagnosis. Phil gives all the credit to the hospital. He was fortunate that his experience was good.

 

[7:55] Phil says that the staff at the ER and the GI specialist were so knowledgeable about the research and where things were going in this area of medicine. They were very confident about the diagnosis and treatment plan.

 

[8:11] Dr. Arcenaux gives a shout-out to his GI. He spent well over an hour with him during his initial consult. He explained how EoE would impact him, from diet, grocery shopping, and challenges eating at restaurants, because of cross-contamination.

 

[8:42] The GI specialist talked him through impacts on dating and dining out  and how to approach social activities.

 

[9:09] Phil’s GI specialist talked to him about employers. He would need employers with health insurance that will cover the endoscopies and treatments for EoE. Phil appreciated the initial onboarding for his EoE diagnosis.

 

[9:41] Ryan says he needs to discuss this with Phil, as he just finished his Ph.D. a few months ago, and he’s looking at insurance for his new job, and how to figure out business lunches.

 

[9:51] Ryan says Ph.D. students are so motivated by free food. As someone with EoE, that never applied to him. Ryan says shifting from normal eating habits to an EoE diet is a major shift.

 

[10:27] Phil knows now that there were signs and symptoms, but he had no idea about them before his diagnosis.

 

[10:33] Phil is on a special diet for his EoE. When he’s not great at avoiding his trigger foods, he starts to see dysphagia symptoms in his swallowing, and he has quite a bit of regurgitation. He had been seeing that for months before this initial major food impaction and ER visit.

 

[10:54] Phil had no idea what was going on. He just thought it was weird that he was regurgitating more than he used to. Sometimes food didn’t go down well. Once or twice, he had a small aspiration event. He thought he needed to chew better.

 

[11:11] He didn’t know what those symptoms meant, and he wrote them off. None of it made sense until that diagnosis. Even then, it took a while to wrap his head around it. Years removed, he sees there were so many signs and symptoms he never processed.

 

[11:28] Holly asks what Phil means by aspiration. He says he means water going down his windpipe, making it hard to breathe, with liquid in his lungs. Holly says that aspiration can be caused by inflammation in people who have EoE.

 

[12:07] Holly says people with EoE can be sent for a swallow study to look at the anatomy of their swallow function. That’s a subject for another episode!

 

[12:35] Ryan says Phil noticed he was regurgitating more than normal and remarks that people with chronic illnesses don’t realize that most people don’t normally regurgitate at all. It’s a sign that something’s wrong.

 

[13:03] The ER doctor didn’t offer Phil any other diagnosis than EoE. The doctor was 95% sure he had EoE, but confirmed it with an endoscopy.

 

[13:20] Holly asks Phil what food allergies he has. As an infant, he had an egg allergy that limited his vaccines. Now he knows his primary allergen is egg, and it led to his EoE issues.

 

[13:51] When Phil started his Ph.D. program, he wanted to eat healthier foods. He cut out fast food, and he ate more eggs. He consumed many eggs during his Ph.D. program. A snack was scrambled eggs or something with scrambled eggs.

 

[14:22] Phil went through a carton of 18 eggs in less than a week. He knew that when he was younger, he’d had egg sensitivity, but as an adult, he’d eaten eggs and nothing happened that registered as an issue. He thought he had outgrown it.

 

[14:40] Phil says he had outgrown other food allergies. He assumed eggs were fine, so he adopted a heavy egg diet to increase his protein intake and be healthier. Then all these symptoms manifested.

 

[15:00] Phil never associated the symptoms with eggs. His treatment plan is dieting and minimizing egg as much as possible. That is not easy in the United States, where everything is processed and often contains egg.

 

[15:19] Holly says she has seen an influx of adult-onset EoE patients with a history of a dairy or egg allergy who were putting cottage cheese and eggs in everything, and all of a sudden, started having regurgitation and food getting stuck.

 

[15:51] Phil doesn’t eat scrambled eggs anymore. One slice of a cake with eggs in it will not send him to the ER. It takes a couple of days of high exposure to reach that point. He knows what he can have daily that will not impact him in the long term.

 

[16:20] Holly and Ryan agree that it’s important to know your limits, and consult with your physicians about foods. Rice is a trigger for Ryan, but if brown rice syrup is about the 20th ingredient, he can have it and be fine. If he were to eat a lot of rice, he will have issues.

[17:21] Phil says he recently got married, and his wife is a health nut. She has radically changed his diet. They eat very high-protein, low-fat, and low-carb. It’s been easy to manage that without eggs. They eat a lot of chicken, turkey, and fish.

 

[17:41] Being from Louisiana, Phil says if he had to give up seafood, he doesn’t know what he would do. He’s a huge craft beer lover. If he had to give up gluten, he doesn’t know what he would do. He can manage without eggs.

 

[18:21] Ryan says dairy was a big trigger for him when he was younger, but now he’s on dupilumab, a biologic approved for treating EoE, and that’s helped him a lot. He’s started to integrate whey protein and milk protein back into his diet.

 

[18:47] Phil says once he finished with school, he graduated and lost health insurance. He didn’t have a source of income or health insurance, so he declined to have dilation therapy. That’s also why he deferred to dietary therapy. He removed his allergens one by one.

 

[19:12] Phil was diagnosed in 2019, not long before the pandemic hit. He lived in a bubble for two to three years and kept to a very regimented diet. That’s where he started to find his balance.

 

[19:30] Phil travels quite a bit as a professor. He goes to international conferences. In 2022, a big annual conference opened in Paris, France. He was living his best life, but didn’t register that every pastry he put in his mouth had an egg wash.

 

[20:14] Phil was there for seven days. On the sixth night, he was eating a tough, dry steak. He had a severe food impaction, worse than the one in 2019. He was with colleagues who didn’t know what he had.

 

[20:40] He paid, excused himself, went to his hotel room, and tried to vomit it up. He couldn’t do it. He called an Uber and went to the nearest ER. He had an emergency endoscopy. It’s not easy to navigate another country’s healthcare system, but he did it.

 

[21:14] When Phil returned from the conference, he said he needed to get serious. He had a GP, but he needed a GI specialist. Cincinnati has multiple great health systems, so he got a GI specialist and started down a path of treatment.

 

[21:38] He told his GI specialist, this has happened to me, and I never want it to happen again. What can we do? He started with proton pump inhibitors. No effect. He doesn’t have acid reflux. Next was the topical corticosteroid, swallowed budesonide. 

 

[22:22] Phil used a pump for asthma, but this was to swallow. After two weeks, he developed a bad case of thrush that took a long time to get rid of. He had never had thrush and didn’t know what it was. It took a couple of rounds of treatment to clear up.

 

[22:43] After that, in 2022, he moved to dupilumab. The FDA had just approved it as a course of treatment for EoE. Phil did not do well with the treatment, and has since gone back to  back to a diet-only course of treatment. 

 

[24:13] Phil says the dupilumab shots did help. He had been having reactions to some foods for years, and after a couple of weeks on the shot, those reactions went away, and he could eat the foods, like avocado and watermelon, again.

 

[24:39] The dupilumab did him some good, as he returned to some foods that he loved, but it wasn’t a long-term solution for him.

 

[24:50] Ryan shares that he started his Ph.D. in 2019. He felt great, he had no symptoms, and he was following up with his GI every year. With no symptoms, he wasn’t scoped until 2025 for insurance reasons. His scope was horrible.

 

[25:11] His symptoms were in remission, but his esophagus looked terrible. He had to switch up his treatment plan. Ryan advises all listeners to follow up with their GI.

 

[26:14] Phil says he thinks he’s in a very lucky position that what his allergen is, what his dietary preferences are, and how he manifests symptoms, do not significantly impact his day-to-day.

 

[26:36] Phil’s doctor in 2019 had advised him that EoE would impact his work and his business lunches. With the treatment plan he has opted into, it doesn’t impact his day-to-day. He says he is very lucky, compared to what other patients deal with.

 

[26:50] It hasn’t impacted his day-to-day, but the problem is, when it does impact something. It’s very big, very noticeable, and it’s in front of everyone. He recalls his Paris episode. He’s very vocal about it. That’s why he reached out to APFED.

 

[27:13] Phil likes talking about it. The only way we know more about it is when we talk about it and share our stories. His colleagues all know he has EoE. They don’t understand exactly what it is, but when he’s having trouble, they understand.

 

[27:44] When Phil has an issue, he doesn’t tell anyone; he just gets up and walks out of the room and paces the hall, doing his stretches.

 

[28:09] Largely, it’s just letting people know he has EoE. They recognize that he manages it himself, and he’s OK.

 

[28:24] Phil says figuring out your medical treatment plan and balancing your quality of life is different from having a disease that can eventually be treated.

 

[28:51] This is something you have to deal with the rest of your life. That’s going to fundamentally change things, not drastically, but in fairly subtle ways. 

 

[29:18] No matter how comfortable you get, you have to be diligent. You always have to be cognizant of your symptoms and stay on whatever your treatment plan is, whether that’s dieting or medication. This will not go away. You’re always going to have it.

 

[29:37] Phil says you have to frame it as a lifelong marathon and find a very sustainable pace. That’s where the quality of life is so important. We’re human beings. We have to enjoy life. Settle in for the long haul. That’s how it will be sustainable.

 

[30:18] Ryan thinks self-advocacy is important, whether talking with doctors, co-workers, or friends. Take care of yourself and make sure you’re doing OK. Make sure you’re putting yourself in a position to stay healthy, especially while balancing a career.

 

[30:45] Ryan says those are great things for our listeners to keep in mind.

 

[30:49] For our listeners who do want to learn more about eosinophilic disorders, we encourage you to visit APFED.org and check out the links in the show notes below.

[30:55] If you’re looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED’s Specialist Finder. available at APFED.org/specialist.

 

[31:04] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experience, please check out APFED.org/shareyourstory.

 

[31:12] 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.

 

[31:23] Ryan thanks Phil for joining us today. This was a super interesting conversation. Phil thanks Ryan and Holly for having him on. He is happy to represent on the podcast.

 

[31:35] Holly thanks APFED’s Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

 

Mentioned in This Episode:

 

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

Apfed.org

apfed.org/specialist

apfed.org/connections

Phillip Arceneaux, PhD

Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

 

Tweetables (Edited):

 

“I took a bite of a roast beef sandwich, and it wasn’t going down smoothly. I drank some water. The bite became an impaction. The water stayed in my esophagus, and I started to aspirate.” — Phillip Arceneaux, Ph.D.

 

“The ER doctor told me he was 95% certain I had eosinophilic esophagitis. I had never heard of it. He gave me a quick rundown of what it was.” — Phillip Arceneaux, Ph.D.

 

“I want to give a shout-out to my GI. He spent well over an hour in my initial consult. He explained how [EoE] would impact me, from diet, grocery shopping, and eating at restaurants, because of cross-contamination.” — Phillip Arceneaux, Ph.D.

 

“I never associated the symptoms with eggs. My treatment plan is diet and minimizing egg as much as possible. That is not easy in the United States.” — Phillip Arceneaux, Ph.D.

 

“This is something you have to deal with the rest of your life. That’s going to fundamentally change things, not drastically, but in fairly subtle ways.” — Phillip Arceneaux, Ph.D.

 

“No matter how comfortable you get, you have to be diligent. You always have to be cognizant of your symptoms and stay on whatever your treatment plan is, whether that’s dieting or medication. This will not go away. You’re always going to have it.” — Phillip Arceneaux, Ph.D.

 

Guest Bio:
Dr. Phillip Arceneaux is an Assistant Professor of Strategic Communication at Miami University in Ohio, where he teaches mass communication courses focusing on media psychology and content strategy. Phil was diagnosed with EoE in 2019 following an ER visit to UF Health Shands Hospital that required an emergency endoscopy. A Cajun French native of Lafayette, Louisiana, he earned his Ph.D. from the University of Florida and has resided in Cincinnati since 2020.