Elimination Diets for Kids with Eosinophilic Esophagitis

Our world revolves around food.  Most events-- family and friend gatherings, holiday get togethers, birthday parties, class parties at school, after game celebrations, special treats for positive reinforcement, and just having a nice meal, all include food.  Food is something we all have in common.  We use food as a way a to socialize with family, friends, even co-workers and acquaintances.

What do you think you would do if one day you were told you could no longer eat your favorite foods.  Let's say you really enjoy that bowl of Corn Flakes with a nice cold glass of milk each morning.  Or you look forward to that steaming cup of coffee with cream.  Perhaps you really enjoy eating yogurt and a bowl of fruit, say strawberries or grapes for lunch.  And how about that grilled chicken or salmon for dinner with a nice roll.  And if you feel like it during the day and don't want to snack, you might grab a piece of chewing gum or suck on a mint.  Now imagine that you can't eat any of these items among many, many more.  How do you think you would react?

So many children with EE are on either elimination or elemental diets.  This can be such a scary, frustrating and overwhelming time for these children and their families.  When we found out what foods Andrew was first going to be taken off, (wheat, chicken, milk, fish, and treenuts) I remember feeling devastated, overwhelmed and so sad for my son.  However, at the same time, I was hopeful that this diet was going to put us on the path to remission.  But my feelings were not the feelings that were most important...there was this 6 year old boy that was being told he was not going to be able to eat his favorite foods anymore.  No more milk, ice cream, cheese, bread, and so many more things that you would never imagine that have these ingredients hidden in them.  Going to restaurants would have to be limited, birthday cake at friends parties was a no-no, he would have to bring his own snack to his basketball games, and on and on and on.  So I asked Andrew how he felt about having to go on this new diet and his reply amazed me. "I'm a little bit sad and a little bit happy.  I'm little sad because I wont be able to eat some of the food I like, but I'm a little happy because I will get to try new foods."  He about brought me to tears.  What  a mature response for a little guy, and how blessed we are to have such a wonderful son.  So then it was my job to do research, buy cookbooks and learn how to change his diet and make his food, as well as our entire family's dinners "Andrew safe".

He later tested positive to more foods, making his total eliminated foods 13, (wheat, milk, eggs, soy, treenuts, peanuts, fish, shellfish, chicken, strawberry, barley, rye and oats) and I had to adapt his diet even more.  When your child has multiple food allergies it is important to learn how to read food labels.  Food Labels-How to Read Food Labels for Allergies is a great website giving helpful hints on how to read labels as well as useful links that give alternate names to look for for the top 8 allergens.  I carried a pocket size card for each of Andrew's allergies that listed all of the names that each allergen could be listed under.  I referred to them as my allergy cheat sheets.  There was no way that I could remember all of the names for all of his allergies, so these cards were a must for me.  I made my own and laminated them, but you can purchase them for $3.00 a piece for the top 8 allergens at  the FAAN (Food Allergy and Anaphylaxis Network) website (as pictured above).

After I learned how to read labels, I had to learn what items to buy.  It makes it easier if you make a list of safe items and where they can be purchased.  Many of the foods that were safe for Andrew needed to be purchased at a health food store due to the fact that they are specialty items...rice milk, rice cheese, special gluten free flours, gluten/dairy/egg free products, etc.  These items are expensive, but become a must to feed your child and keep him well. 


Now for the cooking...I enjoy cooking, but was not thrilled at the prospect of making two meals each night for dinner, so I invested in a couple of allergy free cookbooks,  The Everything Food Allergy Cookbook and The Self-Help Food Allergy Cookbook.  I gave you the links so you could see the books, but I do not sponsor either.  These books are helpful in more ways than just cooking.  They give helpful hints of ingredients to use while cooking allergy free and how they work best.  Now, my friends make fun of me at times, but I make a menu each week and only go to the grocery store once a week.  When Andrew was on the elimination diet, this proved to be even more beneficial in saving time.  Grocery shopping is a laborious activity when you have to read every label of every item you are buying.  So time saving strategies are extremely helpful, and my premade menus enabling me to only go to the grocery store once a week were a definite positive. 


The longer Andrew was on his diet the better I got at changing recipes I had in other cookbooks to make them safe for Andrew.  It takes time and patience and research, but the more you  learn, the more creative you can be.  I do have to say that I am lucky though, because Andrew is a pretty adventurous eater, and there wasn't much I made that he didn't like.  However, I did try my hardest to emulate foods for him that others were eating  in an "Andrew safe" manner.  I can make some killer "Andrew safe" peppermint patties and have even learned how to make dairy free/gluten free/egg free Christmas cookies and chocolate cake.  Who'd a thought?!

But all that is over for now.  After being on his elimination diets for over 9 months his eosinophils were still over 100 and he has now been on the elemental (all liquid) diet for 6 weeks.  I do need to mention that after his first elimination diet of 5 foods, his symptoms significantly decreased and he felt much better, but his eos numbers actually went up from 50 to 100.  They stayed the same after we eliminated the 13 foods, which is why he is on the elemental diet.  That is one of the reasons I find EE to be such a frustrating disease.  During the latter part of his second elimination diet, he was becoming more symptomatic again, so we, my husband, Andrew and I, made the decision for him to go on the elemental diet.  And that journey is for another post.

What is food to one, is to others bitter poison. ~Lucretius                                                                                                                                                   

.........Unfortunately, this is the effect that food has on many children suffering with EE.