We got a call from Liam's gastroenterologist this evening and guess what? HE DOESN'T HAVE CELIAC.
*deep sigh of relief*
However, he does have a condition called eosinophilic esophagitis. If you click on the link, you'll get a run down of what this condition is and how it's treated. It's not a very well understood disease and it seems as if treatment is constantly evolving (I say that because everything I read says something different).
Anyway, the short explanation is that the root cause (they think) is some kind of allergy. That allergy can be food borne or environmental so pinning down the underlying issue is often impossible. The doctor said that 75% of her patients that have this disorder never pin down the allergy. However, we are going to be doing some blood tests to check for common food allergies just to see if something does pop up.
In the meantime, we can still treat the issue. He'll remain on the Prilosec that has been making such a difference for him and we'll be starting a 6 week course of short-acting steroids. I wasn't initially happy about this because steroids? Not great for bone development. But this isn't cortizone or prednisone. He'll be on something like FloVent or Pulmicort and those drugs are much shorter acting and therefore don't have the same side effects. They are such short actors that he's not allowed to eat or drink for 60 min. following each dose because if he does he'll inactivate the meds. The steroids will bring swelling down and allow the tissues of his esophagus to heal.
After he completes the course of steroids, we'll go back to the gastroenterologist for a follow up appointment to discuss how Liam is doing and if there are further steps to be taken.
I'm not jumping up and down excited that he has this. Chances are good that we won't be able to determine what caused this in the first place and if we don't - does that mean it'll keep happening? I worry about that. In the same breath, it's not Celiac. It's not an autoimmune disorder. It could be so much worse and leave him open for so many other diseases. This? This I can deal with.