Being Diagnosed With Eosinophilic Esophagitis (EoE) as an Adult and Cooking With a Limited Diet
Manage episode 348422593 series 2927358
Co-hosts Ryan Piansky and Holly Knotowicz, a speech-language pathologist who serves on APFED’s Health Sciences Advisory Council, talk with guest Stephanie Ulrich, NTP.
Stephanie Ulrich is a Nutritional Therapy Practitioner, allergy-friendly recipe developer, and patient advocate, living in Brooklyn, NY. Being diagnosed with eosinophilic esophagitis (EoE) and food allergies as an adult came as a complete surprise to Stephanie and left her feeling overwhelmed with learning how to navigate her new diagnosis. However, her love of food inspired her to experiment in the kitchen, developing nourishing allergy-friendly recipes that she shares on her website, The Open Cookbook. In addition, Stephanie is a health coach at ViuHealth, a virtual care solution designed to help people living with autoimmunity improve their everyday lives through a combination of data science and access to a dedicated clinician-led care team.
In this episode, Ryan and Holly discuss with Stephanie how she navigates life with allergies, asthma, and EoE. They discuss the impact the conditions have on her life, and her journey to diagnosis and finding her medical care team. This includes a discussion about how she changed careers because of her EoE diagnosis and began a website to share allergy-friendly recipes. Listen in for advice from Stephanie Ulrich for adults newly diagnosed with EoE.
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.
[1:25] Holly introduces today’s topic, Being Diagnosed with Eosinophilic Esophagitis (EoE) as an Adult and Cooking with a Limited Diet, and today’s guest, Stephanie Ulrich, a Nutritional Therapy Practitioner, allergy-friendly recipe developer, and patient advocate who was diagnosed with EoE as an adult.
[1:54] Stephanie specializes in supporting people with autoimmune diseases and a wide range of dietary restrictions. She knows what it is like to have a restricted diet. She grew up eating anything, but in her thirties, she was diagnosed with food allergies, EoE, and other autoimmune diseases. The diagnosis that impacts her the most is EoE.
[3:40] Stephanie noticed she had bad heartburn and coughing at night when she was trying to sleep for years before she was diagnosed with EoE. A few months before her EoE diagnosis, she started burping all the time. It was embarrassing. Her heartburn was getting worse. She went to a GI doctor who first thought it might be related to IBS.
[4:21] The doctor suggested an endoscopy for Stephanie but she put it off. Three months later, when she woke up and took a sip of water, she had the worst pain in her chest that she’d ever experienced. Everything got worse from there. Over the next month, Stephanie basically couldn’t eat. She couldn’t swallow. It was scary.
[4:58] When Stephanie had severe chest pain, her doctor sent her to urgent care. After an EKG, the doctor suggested it was GI-related. Stephanie was directed to a gastroenterologist. She booked an endoscopy. That gave her the diagnosis of EoE. Ryan and Holly relate to Stephanie’s symptoms.
[5:52] After Stephanie learned her doctor wasn’t experienced in treating EoE, she started on a journey to find a different doctor. This included attending an APFED patient education conference. She feels fortunate that she found a new doctor quickly.
[7:38] Stephanie uses an elimination diet and medication to treat her EoE. She does not eat the top nine food allergens, plus legumes, corn, most nightshades, most spices, etc. She is in the process of gradually adding food back into her diet in collaboration with her doctor. She is trying to add eight new foods a year. At her lowest point, she was restricted to five foods. Now she can eat at least 50 foods.
[8:21] Stephanie takes a swallowed steroid which has helped her expand her diet, so she is happy about that. She tells how good and bad days contrast for her. Food is emotional for her, and bad days are days when she misses the spontaneity of being able to go out and eat whatever she wants. The hardest days are travel days.
[9:56] Stephanie is still figuring out how to manage eating while traveling. She’s experimenting with shorter trips and getting accommodations with a kitchen included. Her first stop on a trip is the grocery store. She brings a suitcase filled with food and snacks.
[11:38] EoE has changed Stephanie’s career. She first met Ryan shortly after her diagnosis, when she was working as a landscape architect. The long working hours and significant travel were hard to manage. She spent all weekend prepping meals to eat at work and it was exhausting.
[13:01] Stephanie stepped away from her job as a landscape architect. She did freelance work for a few months and then went back to school to become a Nutritional Therapy Practitioner. EoE played a huge role in terms of choosing her career. Now she has a flexible schedule, works from home, and makes food during the day as she needs it.
[14:46] The Open Cookbook is where Stephanie shares allergy-friendly recipes and her experiences of living with EoE and other chronic conditions. She has made a lot of connections with people who have EoE and it has been great for her. She meets other people with EoE on her Instagram account. Developing the recipes helped her love food again.
[16:33] Stephanie has two recipes that stand out for her. They have personal meaning, as they are similar to recipes from her childhood. The first is Beef Stroganoff, made with coconut cream and coco aminos. Stephanie uses a spiralizer to cut daikon into noodles.
[18:42] Stephanie explains her process for creating recipes based on comfort meals people might be missing. She also discusses using a single ingredient in many different ways. She uses butternut squash as an example of a versatile food.
[21:05] Stephanie discusses planning the nutritional content of a recipe. She aims for creating meals that balance being nutrient-dense, while also foods that people are happy to eat. She uses gluten-free, grain-free flours, like tigernut flour (from a tuber), and green banana flour.
[24:19] Stephanie tries to keep her recipes flexible. She wants them to be accessible and inclusive. She encourages people to adapt recipes on the website to make them their own. Chia egg, flax egg, or gelatin egg are egg substitutes. Carob can be swapped for chocolate or cocoa. You can also filter the recipes by diet types for your needs.
[25:46] Some ingredients are more readily available online.
[26:17] Stephanie took a little hiatus from developing new recipes but has begun adding new foods to her diet and is starting to experiment with recipes using those ingredients. This year, she also started an online support group for adults who have EoE.
[27:05] Stephanie has recently added new foods to her diet, including hemp hearts, flax seeds, and sacha inchi seeds to her diet. Flax seeds and sacha inchi seeds are high in Omega-3. Stephanie has also added chicken to her diet and is enjoying chicken wings. She previously had restricted her meats to turkey, bison, and beef.
[28:12] Stephanie has some advice for adults diagnosed with EoE. You don’t have to figure everything out right away. Take your time. It’s OK to feel grief and loss around your diagnosis. Eventually, it will feel like it’s just part of your life and you’ll develop a new normal. Establish your boundaries. Connect with other adults who have EoE.
[30:15] Stephanie shares advice for the family and friends of someone who has EoE. Please continue inviting them to events. If they are not comfortable, they will politely decline. If they come, they may just bring their own food. It’s about continuing to have social connections with family and friends, rather than just about food.
[31:40] Would Stephanie have done anything differently? She would like to have been more patient with herself and her family and friends. EoE is a complex disease and it takes a while to understand what it is. Be patient with the process. You’ll make mistakes but you will get there. She suggests not limiting yourself in what you can do with EoE.
[32:42] Holly thanks Stephanie for sharing her experiences on the podcast to help others. Stephanie thanks APFED for having her on the podcast.
[33:01] Stephanie ends by reminding listeners that if you are an adult newly diagnosed with EoE, you are not alone. There are others who are happy to support you. If you need more medical support, keep looking until you find the right medical team for you. It will look different for every single individual. Keep going. You will get there.
[33:30] Ryan thanks Stephanie for her advice. Ryan shares resource links for listeners to learn more and connect with Stephanie and with APFED.
Mentioned in This Episode:
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
The Open Cookbook on Instagram
Real Talk: Eosinophilic Diseases Podcast
This episode is brought to you thanks to the support of our Education Partners Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.
“I love working with people who have limited diets to think more creatively about how they can use those limited food choices. I want people to feel encouraged and excited about experimenting in the kitchen and feel excited about food again.” — Stephanie Ulrich, NTP
“Growing up, … I could eat anything. … I did have asthma and environmental allergies. … It wasn’t until I was in my thirties that I was diagnosed with a wide range of chronic health conditions, including food allergies, EoE, and … autoimmune diseases.” — Stephanie Ulrich, NTP
“I also take a swallowed steroid right now that does work for me and that’s really allowed me to expand my diet, so I feel pretty happy about that.” — Stephanie Ulrich, NTP
“I started The Open Cookbook when I was able to start adding a few foods back into my diet. At the time I was in this major rut where I was eating the same soup every single day. [I said], ‘I love food and I can’t keep living like this.’” — Stephanie Ulrich, NTP
“The baked goods have a mix of alternative gluten-free, grain-free flours. One of my favorites is a tigernut flour; … it’s a tuber and they just grind it up. It works well as a replacement for almond flour. … Another great one is green banana flour.” — Stephanie Ulrich, NTP
“I honestly just love adding vegetables into everything. I’ll add pumpkin into brownies.” — Stephanie Ulrich, NTP
“It’s also OK to feel that kind of loss and grief around your diagnosis because, honestly, EoE completely changes your life and it takes some time to get adjusted. So give yourself that time. Give yourself that grace.” — Stephanie Ulrich, NTP