Coping With Eosinophilic Esophagitis – Advice for parents of children suffering from Eosinophilic Esophagitis. My daughter has had Eosinophilic Esophagitis (EE) for several years.
Coping With Eosinophilic Esophagitis
What is Eosinophilic Esophagitis?
EE is a disease that is an allergic reaction in the esophagus, the tube that carries food from the mouth to the stomach. Eosinophilic Esophagitis is an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of eosinophils, a type of white blood cell. The most common symptoms of EE in children are abdominal pain, nausea, vomiting, coughing, and failure to thrive. Basically, EE equates to having severe (or numerous) food allergies.
The foods that trigger EE vary from person to person. In my daughter’s case, there were SEVERAL foods that caused problems for her, close to 40 to be exact. We started to notice something was up when she was only three months old and began with vomiting and digestive issues. One of the worst parts about food allergies, EE or severe food allergies is the learning curve that goes into diagnosing them. With my daughter it was case of “OK, she’s allergic to all forms of dairy, let’s try soy milk. Oh, she’s allergic to soy too… let’s try rice milk.” It seemed to never end. All the while, my daughter was in constant pain and we didn’t have any answers. It was also extremely difficult to hand prepare every meal for her knowing a trip to the hospital or severe discomfort was at stake if we allowed her to cheat even a little. Another tough aspect, at least mentally, was watching her mature to a point where she knew she was different from the other kids. I felt so bad for her when she couldn’t enjoy the foods her friends could eat at school for birthday parties.
We took our daughter to gastro specialists and allergists. For years, all they could do was perform a scope periodically to check on her condition, and prescribe meds to help with the gastric reflux pain and ulcers. The poor girl had numerous stomach ulcers and had to endure a full colonoscopy. I cringed during all of the scratch tests and RAST tests. Meanwhile, we would work our tails off to make sure she did not consume any of the triggering foods. At times, this was difficult as new foods would be added to her “list” unexpectedly. With a list of 40 ingredients we had to avoid at all costs, we had few options. We followed an elimination diet. Our daughter was not allowed to consume anything she was allergic too. “Cheating” was not an option.
So, enough of our hard luck story, what about coping With Eosinophilic Esophagitis?
The good news is, if you can keep the triggering foods from the child’s diet (i.e. a complete elimination diet), there is hope that the Eosinophilic cells will clear and the food allergy symptoms will lessen over time. This will allow you to slowly “re-introduce” foods to their diet. Evidence has accumulated in children that diets that eliminate the allergy-inducing food can result in reversal of the esophagitis and disappearance of the eosinophils (Source: www.medicinenet.com). My daughter is proof of this and proof that special diets can work!
Re-introducing foods as means of coping with Eosinophilic Esophagitis is a very tedious process. Every meal is a science experiment. Our first ingredient we were allowed to re-introduce was wheat. It was a slow process and we had to constantly monitor if she had any aches, stomach issues or skin irritation. We had to keep a very detailed food journal. Because of her elimination diet, her body had healed to the point where her body began to accept the foods she was previously allergic to. No cheating! If your son or daughter shows allergy symptoms, abandon ship and start over!
Yes, I am so excited to announce that we have reached a point where my daughter experiences much less discomfort, vomiting, diarrhea, etc. And, best of all, she is able to eat so much more and have a more well rounded diet. I was so happy when she had her first piece of pizza, I literally cried.
We still avoid certain foods, e.g. seafood, nuts, potatoes, rice, green peppers, milk and more. (She is fine with cheese, but we haven’t tried the milk route yet). And, we try to keep the foods she can eat in rotation. Too much of one food can cause that food to be a trigger. So we try to not do the same food day after day, but rather have a rotation of foods on schedule. We are very hopeful that her current success means that we will be able re-introduce more foods successfully without hampering her coping with Eosinophilic Esophagitis progress.
I can’t say I felt confident years ago that we would reach this point. Had you asked me four years ago where I thought I would be in four years, I wouldn’t have guessed that the strict diet would have been so successful.
Looking back now, I can say it was worth it. Limited moments of eating out, vacations that included condos with a kitchen so I could cook her meals, and day after day of analyzing and tracking her food intake. We still continue with much of this today, but we have been able to “loosen the reins.”
I think the reasons for our success are many. My guess is that as a child gets older, his/her system develops and can better tolerate certain foods. Plus, if you can find the triggering food(s) and avoid it/them, you can help heal the Eosinophilic Esophagitis. We also worked closely with a food allergist at Children’s Hospital to help us re-introduce the foods very slowly and one by one, in combination with certain medications.
Coping with Eosinophilic Esophagitis has been a struggle, but the results have been worth the effort.
Do you have any coping with Eosinophilic Esophagitis strategies?