Oct 26, 2023
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 thank Dr. Jenny Huang again for joining them and thank APFED’s education partners, linked below, for supporting this episode.
Mentioned in This Episode:
“Becoming the Patient” Commentary Published in Gastroenterology
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:
“If you have [eosinophilic] inflammation in the stomach, that is called eosinophilic gastritis or EoG. That can cause symptoms like abdominal pain or nausea.” — Dr. Jenny Huang
“Deciding on a treatment plan is a personal choice and it needs to fit someone’s lifestyle and their individual needs. What’s right for one person may not be right for someone else.” — Dr. Jenny Huang
“Did you know that soy sauce has wheat in it? I had no idea until I started reading all the labels. So, we started buying soy sauce that doesn’t have wheat in it!” — Dr. Jenny Huang
“When I was first diagnosed, I wasn’t sure how bad my disease was or how bad it was going to get. I read a lot about the possible outcomes and it really scared me. … I couldn’t imagine what it would be like if my symptoms progressed.” — Dr. Jenny Huang
About Dr. Jenny Huang
Dr. Jenny Huang is an allergy and immunology fellow at Scripps Clinic. She is passionate about eosinophilic gastrointestinal disorders and has made it her mission to spread awareness about what it is like to live with EGID.
“Becoming the Patient,” by Jenny Huang, MD