I'll cut right to the chase. We tested him again for allergies, including everything he's been ingesting, and it all came back negative. We were told the same thing at this appointment as we were told two years ago almost to the day...that there are no reliable tests for allergies of the gut (i.e. non IgE reactions). Jonathan clearly doesn't have a food allergy as most people would think (i.e. an IgE peanut allergy).
On one hand we're glad to know he doesn't have this kind of allergy. On the other hand, we really don't know if there are foods that he's still reacting to after eating. Julia was tested for a wheat allergy and Celiac and in came back negative, yet when she eats gluten her stomach gets bloated and it gives her a stomach ache. Just because he doesn't have the standard allergies, that doesn't mean he doesn't have problems with certain foods. We just don't know until we move him to real food and introduce foods one at a time. After this appointment we are moving forward with feeding Jonathan real food through his tube. One at a time we'll introduce new foods and see what happens, hoping to isolate any problem foods. We also hope that we'll see less vomiting, better growth, and increased appetite on real foods. This is the start of the process to get him off of formula and man-made products.
Almost all of the doctors we've talked to now think what's going on is more likely due to Crohn's-like symptoms. We have a big appointment in Denver next week to talk to an IBD specialist, hoping he can give us some answers on where to go next.
