Community Perspective: EoE and Unsedated Transnasal Endoscopy
Real Talk: Eosinophilic Diseases
Release Date: 03/17/2023
The Spoon Theory and Eosinophilic Disorders
Real Talk: Eosinophilic Diseases
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...
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Gastro Girl and GI Diseases: Conversation With Jacqueline Gaulin
Real Talk: Eosinophilic Diseases
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...
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The Family Risk of Eosinophilic Gastrointestinal Diseases
Real Talk: Eosinophilic 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...
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Remodeling and Eosinophilic Esophagitis (EoE)
Real Talk: Eosinophilic Diseases
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...
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Journey to an Eosinophilic Esophagitis (EoE) Diagnosis
Real Talk: Eosinophilic Diseases
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...
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Community Perspective: Eosinophilic Gastritis (EoG)
Real Talk: Eosinophilic 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. 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,...
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Community Perspective: Eosinophilic Esophagitis
Real Talk: Eosinophilic Diseases
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...
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Esophageal String Test: Monitoring Tool Use and Development
Real Talk: Eosinophilic Diseases
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...
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Live from APFED’s EOS Connection 2023
Real Talk: Eosinophilic Diseases
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...
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Proton Pump Inhibitors and EoE
Real Talk: Eosinophilic Diseases
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...
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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:
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Real Talk: Eosinophilic Diseases Podcast
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