I'm looking for anyone with any experience with Eosinophilic Esophagitis (EE) and/or food allergies. My 4.5 yo DS was recently diagnosed with this along with several food allergies and I am unsure with how to proceed with this diagnosis. He is allergic to:
- Egg yolks
- Cane sugar
- Beet sugar
- White fish
I have no idea what the next step is or who or what will help us down this path. His pediatric GI specialist and his allergist are of no help and only recommend an elimination diet and see what reactions are without the offending foods and what they are when they are integrated back into the diet. Great. Then what? What about at school while we're doing this diet? What am I supposed to feed him? He already has self-restricted his diet to only a handful of foods, all of which have at least one of the allergic items. I can't supplement with pediasure, boost, ensure, or anything else easily obtained from the store because they all have sugar of some sort in them even if I eliminate all food sources. It isn't like my DS's allergic reaction is anaphylactic, it is very distinct to his condition, so it isn't like I absolutely need to avoid any and all contact like a severe peanut allergy or something. He gets diarrhea, constipation, severe stomach pains/cramping, vomitting, reflux, no appetite, weight loss, headaches, things like that. I've found that not all foods containing these items bother him, which is very difficult since I have no idea when he'll flare up. Somedays a food will bother him, and other days it won't.
I'm so frustrated and I don't know where to go. I called and made an appointment with my son's PCM to get a referral to see a dietician in hopes that they can help me navigate this. Any words of advice? I cross posted on the allergy boards, but haven't had any luck. Thanks for any input you can give!