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 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 in

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:

Jacqueline A. Gaulin

Gastro Girl
Where Can I Find Resources for Eosinophilic Disorders? Special Guest Mary Jo Strobel

GI on Demand

Gastro Girl Channel on YouTube

The Kindness Cure: How the Science of Compassion Can Heal Your Heart and Your Wor

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 peop

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

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 New York Times Magazine article 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 APFED.org/specialists. Also, please check out Moises’s article 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, An Epidemic of Absence, 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 apfed.org/e

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 apfed.org/connections.

[20:04] To learn more about eosinophilic gastritis, visit apfed.org/eog. To find a specialist, visit apfed.org/specialists. Ryan recommends reading Dr Huang’s article linked below. Ryan and Mary Jo tha

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 apfed.org/eoe, to access the Specialist Finder, visit apfed.org/specialists. 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:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.

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.

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

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 apfed.org/webinars 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 apfed.org/conferences 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 CEGIR, Children’s Hospital Colorado, Sanofi, Regeneron, Abbott, AstraZeneca, Ellodi, Reckitt | Mead Johnson Nutrition, Ajinomoto Cambrooke, Bristol Myers Squibb, EnteroTrack, EvoEndo, GSK, Nutricia, Allakos, and PhRMA.

[11:34] To learn more about APFED, visit apfed.org and follow APFED on social media.

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Children’s Hospital Colorado

EOS 2023 Connection Conference

CEGIR

Real Talk: Eosinophilic Diseases Podcast

APFED Videos and Webinars

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

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, P