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Elimination Diets for Eosinophilic Esophagitis (EoE)… It’s Not as Easy as it Seems

In honor of National Eosinophil Awareness Week (May 16-22), Tara McCarthy, a pediatric dietitian who specializes in food allergies with an expertise in EoE, has shared a guest blog post regarding her personal and professional experience with the elimination diet for EoE.

National Eosinophil Awareness Week was started to increase awareness and educate on eosinophil-associated diseases. Eosinophil-associated diseases involve a type of white blood cell called an eosinophil which play an important role in our immune system. In healthy individuals, eosinophils make up no more than 5% of white blood cells circulating in the body. However, they can be elevated in the digestive tract, organs, tissues or blood and if the cause is unknown, this can be an indicator of an eosinophil-associated disease. Eosinophilic gastrointestinal disorders (EGIDs) are the most common of the eosinophil-associated diseases, specifically eosinophilic esophagitis (EoE). Eosinophilic Esophagitis (EoE) is an allergic condition where eosinophils or white blood cells build up in the esophagus causing symptoms. Common treatments for EoE can include medication or elimination diets.

What I Learned as a Registered Dietitian Following an Elimination Diet – How it All Started

My name is Tara McCarthy and I am a pediatric dietitian who specializes in food allergies. I have been seeing families with Eosinophilic Esophagitis for more than 15 years.  Because so many of my patients with EoE follow elimination diets for treatment, I decided to take on this challenge myself to try and gain some perspective and understand the difficulties that so many of my patients and families face with these diets. Standard elimination diets usually require the elimination of one to six foods for about 8-12 weeks with a reintroduction phase after the initial elimination period. Each year, I pick an elimination diet to follow myself for the entire month of January and have now done this for about 10 years. Some people – and by some people I mean my family – will say, “why do you do these diets and do we have to do these diets too?” My answer is always the same, “I do this to learn more, to feel some of the trials and tribulations of my patients, and to help me understand how to be a better educator, counselor, dietitian and more creative cook”. My family does not follow the elimination diet during the day but I only make one dinner. Sometimes there are some extras at the meal for the rest of the family. For example, if we are having chicken sandwiches, I may not have the bun but have a side of potatoes instead. I always make enough of my “safe” food so anyone in my family has the option to eat the meal I prepared for myself. At first, I think it seemed like a nuisance to my family, but now they are used to it and are very good at supporting my elimination diet journey and keeping me on my toes. “Mom, can you have this?” or “mom, are you sure there is no milk in that?” are common things they will say to help keep me accountable.   

My First Experience

The first year, I removed the top 6 food allergens that are common to EoE. All of the research papers in EoE that talk about the elimination diet call it the SFED (six food elimination diet). In truth, SFED is actually 8 foods (milk, egg, wheat, soy, peanuts, tree nuts, fish, shellfish). That first year, removing 8 foods was a big deal and I was not successful. Why was I not successful? I lost weight and I was so focused on being “safe” by strictly eliminating these 8 foods, that I did not focus on nutrition. Let’s just say, I was hungry a lot and I was eating Swedish fish because it was free of the top 8 allergens. Candy every day is a true dietitian confession that is not a proud moment. This was also one of those moments where I thought ‘I can do better and I now know how hard this is on our families’. As a result, I could be empathetic as well as sympathetic and knew that I needed to improve my knowledge and continue to work on this challenge yearly.

Improved Success the Second Year

The next year, I added two challenges to my 6 food elimination diet, by eliminating candy and adding 12 ounces of an amino acid-based formula daily. The addition of formula was done to help prevent weight loss and again, understand how my clients fit this into their lifestyle on an elimination diet. I also wanted to find out if this was a feasible request. What I learned was that I actually enjoyed the amino acid formula, or maybe I was just hungry and this helped to satiate me. By the end of the month, taking the formula was the easiest part of this diet.

Elimination Diet Challenges

Some of the challenges when following any elimination diet are cost, planning, lack of spontaneity, more home cooking, meeting nutrient needs, maintaining or gaining weight and finding quick, healthy, foods that are easy to take on the go. Who knew I could find dried fruit at CVS? This is important research that helps me guide families through the elimination diet. Families are busy and this diet can feel restrictive. As dietitians, it is our role to make it easier for our families to follow elimination diets and give them the tools to continue to do all the things they did before this diet change. There is a place for Swedish fish, I call it the ‘emergency treat food’ for kids to have when a helpful person brings food to an event that you did not expect food to be. For example, when a kind mom brings munchkins donuts to the soccer game, you will now have the ‘emergency treat food’ as backup.

This experiment also helps me understand that it is exhausting to follow an elimination diet; however, we did have some wins in new recipes, such as top 8 allergen free rice pudding made with canned coconut milk and energy bites made with oats, pumpkin seed butter and dairy free chocolate chips. My kids will be the first to tell you about the fails, I still have not found an allergen friendly pancake recipe that my family looks forward to on a Saturday morning. I love that my family likes to find new allergen friendly recipes and are willing to try new foods. Sometimes, it’s a simple change, such as using coconut aminos in place of soy sauce to make lettuce wraps or stir fry. Potatoes are a staple in my household and hashbrowns have become a quick breakfast enjoyed by all.

Eating out is not a weekly event in my house, and my first year there was some eye rolling when I would explain my “allergies” to the server. One of the hardest parts of communication with the server was explaining I can have soybean oil and soy lecithin but not any other products with soy in the ingredient list as they would not be safe. I found that servers can be helpful or not so helpful just like any profession. The important piece I tell my families is to advocate with kindness. Most restaurants WANT TO HAVE YOU come back, so I keep a list of restaurants in my brain and remember which ones have been helpful with food allergies.

What to Do with What I Learned

From my experience, I have found elimination diets are doable, but definitely take a lot of time and rob you of your spontaneity when it comes to eating. I encourage my patients to try and increase their fruit and vegetable intake and I make sure to educate on all the foods they can have instead of focusing on what they cannot have. It’s all how you look at it!

Cambrooke would like to thank Tara McCarthy for sharing her valuable experience and expertise with the elimination diet to help so many families in the EGID community. 

How Cambrooke’s Formulas May Help Those Following an Elimination Diet

Cambrooke has developed two hypoallergenic amino acid-based formulas that offer a complete nutrition profile designed for children over one year of age. These formulas are a safe supplement to an elimination diet and help to ensure your child’s nutrition needs are satisfied. EquaCare Jr. provides a nutrition and taste profile similar to other junior amino acid formula, but at a more affordable price. Essential Care Jr. is designed as a premium formula without corn, soy, or artificial ingredients. It offers a more natural taste as it is sweetened with monk fruit and contains naturally fermented vegan amino acids. Click here to learn more about how these formulas may be of benefit to your child.