Food Allergies/Eosinophilic Esophagitis

In July 2010 Tyler and Jacob were diagnosed with Eosinophilic Esophagitis. Jacob's numbers were very low, so he went dairy free and was great. We decided about 3 weeks ago to try Jacob out on dairy again to see how he does, so far so good. Tyler though, he has never cleared and we have struggled for the last 3 years to figure out what his trigger food was. When he was originally scoped it was to test for celiac disease, which came back inconclusive, so the doctors involved decided to put him gluten free, he had great results, so they called his test positive. So since July 2010 he has been dairy, gluten and nut free. He has still had issues with his esophagus, with food getting stuck as well as getting upset stomach. He had a repeat scope in July 2011, the GI doctor he had said his scope had improved and just continue what we are doing. Come to find out that GI doctor isn't real familiar with this disease and he actually didn't have a clean scope it had stayed the same, at which point we should have been more aggressive then.

He has been to the allergist many, many times and he is the one who really took over his care. He didn't call the scope clean, did more allergy testing and added some medication to see if that would help. The medicine helped for the time being, but right when he went off he would flare again. In March 2013 I took him to his pediatrician for refills for his asthma, she noticed his growth has slowed a lot and he hit less than 1% for his height and weight, so she referred us to a nutritionist. I took him to the nutritionist a couple weeks later, her recommendation was to power pack his foods and add as much soy to his diet as possible. She wanted him to have soy chocolate milk with every meal, soy yogurt and to add oils to his food. She also suggested we find a diary free protein shake to give him before or after gymnastics. I followed her advice and within 4 days Tyler was having trouble swallowing at every meal. He would have to have a large drink just to get through a meal. When the food gets stuck he can usually drink water and push the food down with water. There has only been 1 time that it took him about 45 minutes to get down, we were almost ready to head to the hospital with him. He can breath during the episodes, he can just feel the food sitting in his chest. So I backed off all soy, didn't take soy out of his diet, only took the milk, yogurt and protein shake back out of his diet till I could find a new GI doctor to take him to.

In June I took him to the new doctor, he seems great, really knowledgeable with this disease and works close with his allergist to plan out the best treatment for Tyler. He had another scope done in June and his numbers came back so high, his upper esophagus came back 100+ eosinophils and the lower came back 40+ eosinophils  These cells are making his esophagus swell, which is causing the swallowing problems. This can lead to the low weight gain and the slow growth, as well as over time if we don't manage it he can build up scar tissue in his esophagus which could lead to permanent damage making it so he could never swallow. His new GI doctor likes the allergist to draw up the food plan and he will manage the medication side of it. Before he prescribed any medication he wanted us to go to the allergist. We went back to the allergist and we have come up with hopefully a good plan for Tyler. All the reading I have done on this disease shows an 8 food elimination diet is the best way to go. So for the next 8 weeks he will be free of all these foods:

Wheat
Corn
Soy
Dairy
Egg
Beef
Nut
Fish

After 8 weeks he will go in and have another repeat scope, which we are hoping will be a clear scope and no eosinphils will be present. If that is the case we will add 1 food back in his diet at a time and re-scope every 6-8 weeks. If the scope comes back clear he will keep that food in his diet and we will move to the next food. By doing this we should hopefully be able to find his trigger foods and know for sure what foods he must avoid. We will never add wheat (gluten) or nuts back in his diet though, they will remain out of his diet for life. I am just hoping this works and after 3 years we can finally get some answers! I hate that Tyler has to go through this, I have told him so many times I wish I could take it away from him and go through it for him. I hate that he can't just go to a birthday party and have what everyone else is having, that we have to pack him his food. This disease is such a guessing game and not everyone has the same trigger foods, it just sucks!