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ACG PERSPECTIVES

Patient Perspective: Collaborative Doctor-Patient Relationship Key to Dietary Management of Eosinophilic Esophagitis

By Jacqueline Gaulin

NOT MANY PEOPLE WOULD BELIEVE THAT LORI EATON, A PERSONAL CHEF AND CERTIFIED HEALTH AND NUTRITION COACH,

cannot eat (or even taste) most of the delicious food she prepares for her clients, who have included Dwayne "The Rock" Johnson, Jeff Bridges, and the cast and crew of many TV shows and movies. But for Lori, who was diagnosed with eosinophilic esophagitis (EoE) in 2007, just taking a bite of a dish containing such common ingredients as rice, gluten, soy, corn, dairy, wheat, pork, or fish will trigger any number of GI and other symptoms that will wreak havoc on her body, including swallowing difficulties or a food impaction.

Lori has faced these challenges related to food by learning all she can about EoE and the role diet and nutrition plays in her disease, and by steadfast selfadvocacy that has made her a “model” empowered patient, according to her doctor, a leading expert and researcher in EoE, Evan Dellon, MD, MPH, FACG. Dr. Dellon is Professor of Medicine in the Division of Gastroenterology and Hepatology at the Center for Esophageal Diseases and Swallowing at the University of North Carolina at Chapel Hill. Lori’s strong collaborative relationship with Dr. Dellon has been key to her finding effective dietary management of her EoE and achieving remission. 

Research shows that dietary treatment is effective for patients with EoE, but Dr. Dellon notes that an elimination diet is not for every patient, “Elimination diets may not be the best approach for college students who have to eat in the school cafeteria or people who travel a lot, for instance."

Dr. Dellon says that some patients just cannot tolerate the restrictions, or do not have the discipline, time, insurance coverage or resources to commit to a sometimes expensive and logistically difficult diet, or to attend follow-up appointments and endoscopies, which are an integral part of the process. EoE patients and their physicians should consider these factors when deciding between swallowed steroids and dietary therapy.

AN AVID TRAVELER ON A CHALLENGING JOURNEY WITH EOE

An avid traveler, Lori admits it’s “very challenging” to stay on an elimination diet. “That’s why Dr. Dellon and I have worked out a way for me to have my cake and eat it too,” she says. “I take budesonide when I go on vacation. It’s a short-term steroid treatment which allows me to eat anything I want while I’m on vacation. It helps keep me sane. It helps keep me on my eliminations the other days of the year. I also look forward to vacations because I get to eat like a normal person again.”

She praises Dr. Dellon’s expertise in EoE and his willingness to listen, answer her questions, and embrace her as an educated partner in her healthcare. She credits this as the reason she can enjoy life and trips abroad without worrying about what she can eat. But Lori’s journey to Dr. Dellon wasn’t easy.

Like many patients who suffer for months and even years before seeing a doctor or getting an accurate diagnosis, it took Lori years before she was finally diagnosed with EoE. But she had struggled with a variety of GI issues, such as acid reflux, constipation, and abdominal pain since 1997. These symptoms worsened and proton pump inhibitors (PPIs) only caused unpleasant side effects.

Even after her EoE diagnosis, Lori felt dismissed and unheard. After more failed medications and side effects, she researched the role of diet in GI health and tried to manage her symptoms by eliminating various foods and keeping a food journal.

Over time, her symptoms worsened and by the spring of 2010 her dysphagia was so extreme she was having trouble swallowing applesauce and yogurt. That’s when she sought a referral.

“I’m so glad I stood up for myself and asked for a referral because that’s how I came to know Dr. Evan Dellon. It took several months to get in to see Dr. Dellon, but he was worth the wait. Dr. Dellon gave me a clear and accurate explanation of EoE and the different therapies. Finally, I found a doctor who could help me understand my disease and treatment options! He has been my doctor ever since.”

Lori drives over 300 miles round trip for each appointment with Dr. Dellon. “I haven’t found a doctor in my city with the expertise and understanding Dr. Dellon has. I’ve also never worked with a doctor who is responsive to my questions and open to my ideas. He has a wonderful bedside manner.”

INGREDIENT FOR SUCCESS: A STRONG PARTNERSHIP WITH CLINICIANS

Dr. Dellon is equally impressed with Lori. “She’s incredibly motivated and knowledgeable as a chef, so she knows how to work within the very strict eliminations to make her food both nutritious and enjoyable, so she is better able to stick to the diet, something not every patient is able to do.” He urges that EoE patients who undergo an elimination diet work closely with a registered dietitian or nutritionist to make sure they are getting adequate nutrition and support. “This is crucial for success,” he says.

Dr. Dellon recommends that patients fully understand the process and requirements of an elimination diet and be honest with themselves and their doctors about their willingness and ability to follow it. He suggests clinicians also understand that an elimination diet is not a “one-sizefits-all” treatment option, and that each patient should be evaluated for suitability for treatment type based on their individual circumstances.

“She’s incredibly motivated and knowledgeable as a chef, so she knows how to work within the very strict eliminations to make her food both nutritious and enjoyable, so she is better able to stick to the diet, something not every patient is able to do.”

—Dr. Evan Dellon

THE INSIDE SCOOP: ELIMINATION DIET FOR EOE AND TIPS FOR SUCCESS A Q&A WITH LORI EATON

HOW DID YOU APPROACH DR. DELLON ABOUT TRYING AN ELIMINATION DIET?

Elimination diets were part of the discussion from the beginning of my treatment with Dr. Dellon. Since EoE is triggered differently in each person, it can take a long time to discover a person’s triggers. I wanted to try and figure out what my triggers are versus taking medication.

At the time I started treatment with Dr. Dellon in 2011, there were studies/trials being done on elimination diet and medications. I know I did a budesonide study, and I was on steroids on and off from 2011 to 2013. My insurance company notified me in 2013 that budesonide was no longer covered, so I became focused on elimination diet therapy as my sole treatment.

I told Dr. Dellon that from 2013 to 2016, I had tried various forms of eliminations (gluten, dairy, soy, nuts/seeds, eggs, fish/shellfish) and I was frustrated that I couldn’t get into remission. In early 2016, I came up with my own mega-elimination diet, and Dr. Dellon approved. (Note: Dr. Dellon emphasized that this approach was specifically tailored to Lori given her prior history of treatments, and is not representative of a starting point for most people who go on an elimination diet.)

For eight weeks, I ate only organic chicken, blackberries, sweet potatoes, and nonnightshade vegetables. I used olive oil, avocado oil, and basic seasonings on those items. I only drank water and herbal teas like ginger and peppermint. I kept a food diary and I did not eat anything else outside of this diet, except for one cheat night halfway through the eliminations. It was a challenge, but my mind was made up about achieving remission.

Dr. Dellon performed my endoscopy at the end of the eight weeks, and the result was zero eosinophils! I did it! It was exciting to finally reach remission, but then began the arduous task of reintroduction, and that was immediately humbling.

WHAT WERE THE RESULTS OF YOUR REINTRODUCTION?

My first re-introduction was fish and shellfish. I passed and remained in remission. I was really excited to be getting results and making progress. Then I failed my rice trial and then failed pork. When a food is a trigger, the eosinophils come back into the esophagus, and in order to move forward with trialing a new food, you must first clear out the eosinophils. This means a reset of eliminations for at least four weeks before trialing the next food. To me, it’s the worst part of the process because it felt like time was being wasted, but it is

Photos courtesy of Lori Eaton.

necessary to clear out the eosinophils so the next food trialed gets an accurate result.

I continued to trial dairy, eggs, turkey, beef, corn, nightshades, etc. and I will continue to trial more foods in the future. In 2018, I suspended my food trials due to other health issues, travel, and my work schedule, but my plan is to begin food trials again in 2019.

WHAT ARE YOUR TIPS FOR PATIENTS WHO WANT TO TRY A DIETARY INTERVENTION FOR EOE?

Anyone with EoE could try diet therapy, however, a few people with EoE have environmental triggers. If someone’s EoE is triggered by dust, mold, pollen, dander, etc., those triggers would have to be eliminated before food trials could begin. Dr. Dellon discussed elimination therapy from the beginning of my treatment, but not all doctors support that. I would say for anyone who wants to try to discover their triggers with eliminations and reintroductions, you may need to find a new doctor if your current one isn’t open to the idea. You need to have a doctor work with you in order to test for eosinophils. Only an endoscopy with pathology will be able to show how many eosinophils are in your esophagus when you trial each new food.

I think my success with my elimination diet was due to having a plan. I kept a food diary, counted down the days until my endoscopy, and encouraged myself to stick with it because I could possibly be in remission. Patients need to know going in that it’s not easy. I did not eat a single meal in eight weeks that was not prepared by me. I was afraid of food contamination so I made all of my meals to ensure I was eating safe food. Not everyone can do that, not without a lot of planning and determination.

WHAT DO GI PHYSICIANS NEED TO KNOW ABOUT DIETARY INTERVENTION FOR THEIR EOE PATIENTS?

A disease like EoE should teach doctors that it is time to look at nutrition as a tool for healing. I do not need steroids or PPIs if I do not eat my trigger foods. Many GI patients would prefer to avoid taking medications, as we often have side effects which are as bad or worse than the disease. When I take steroids long-term, I develop oral thrush, restless legs, headaches, sinusitis, rashes, and achy joints. I would rather avoid foods than deal with all of those side effects.

There have been moments over the past decade when I have simply stopped eating because of fear of impaction. There are times I feel socially isolated because I can’t eat what everyone is eating around me. I have felt depressed, resentful, and anxious over food for many years now. I have gone without eating for several meals because there is no food available to meet my elimination diet criteria. Some days are easier than others. I suggest that physicians stress to any patient trying eliminations to take it day by day.

RESOURCES

 Clinical Guidance and Research • ACG Clinical Guideline: Evidence Based Approach to the Diagnosis and Management of Esophageal Eosinophilia and Eosinophilic Esophagitis (EoE). Evan S. Dellon, MD, MPH, et al. Am J Gastroenterol 2013; 108:679–692; doi:10.1038/ajg.2013.71; published online 9 April 2013. • Elimination Diet Effectively Treats Eosinophilic Esophagitis in Adults; Food Reintroduction Identifies Causative Factors. Gonsalves N, Yang GY, Doerfler B, et al. Gastroenterology. 2012;142(7):1451-9.e1. • Dietary Therapy and Nutrition Management of Eosinophilic Esophagitis: A Work Group Report of the American Academy of Allergy, Asthma, and Immunology. J Allergy Clin Immunol Pract. 2017 Mar - Apr;5(2):312-324.e29. doi: 10.1016/j.jaip.2016.12.026. • Six-Food Elimination Diet and Topical Steroids are Effective for Eosinophilic Esophagitis: A MetaRegression. Cotton CC, Eluri S, Wolf WA, et al. Dig Dis Sci (2017) 62: 2408. https://doi.org/10.1007/s10620-0174642-7 • The Six-Food Elimination Diet for Eosinophilic Esophagitis Increases Grocery Shopping Cost and Complexity. Asher Wolf W, Huang KZ, Durban R, et al. Dysphagia. 2016 Dec;31(6):765-770. Epub 2016 Aug 9. • Cost Utility Analysis of Topical Steroids Compared With Dietary Elimination for Treatment of Eosinophilic Esophagitis. Cotton CC, Erim D, Eluri S, et al. Clin Gastroenterol Hepatol. 2017 Jun;15(6):841-849.e1. doi: 10.1016/j.cgh.2016.11.032. Epub 2016 Dec 7.  Patient Resources • American Partnership for Eosinophilic Disorders (APFED) • Campaign for Urging Research in Eosinophilic Disorders (CURED) • Carolinas EoE Collaborative (CEoEC) • The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) • Current Clinical Trials in EoE at UNC • National Organization for Rare Disorders

 How do I find a good dietitian? 1. Ask your colleagues or health system for a referral to a registered dietitian. 2. Visit the Academy of Nutrition and Dietetics website to find an expert. Refine your search to locate an RD with specific digestive health expertise. 3. Contact Gastro Girl: info@gastrogirl.com