Just got the word from my GI – the biopsy results are inconclusive. I don’t have a copy of the report yet, but my doc explained there was a small amount of damage to my villi. However, it was not full villus atrophy as would be expected from a full blown Celiac. He believes the damage could be from “early Celiac disease” or it could be the result of a severe gastrointestinal virus (I had a nasty stomach bug last Christmas). Given my significant positive improvement on a gluten-free diet, he leans towards the early Celiac theory, but doesn’t want to official diagnose that at this point as my blood work (tTg IgA) was negative (8 with 1-10 being normal). He doesn’t want to exclude Celiac at this point either, as I was 6 weeks gluten-free at the time of the blood work and it’s possible my tTg would have been higher before going gluten-free. ARRRRRRGH. Anyone have a time machine that I could use to go back to February and see a doctor BEFORE going gluten-free?? *Sigh*
So, we also discussed options. 1) take the gene test and hope it is negative (so we could positively rule out Celiac), 2) treat as Celiac/NCGI and go along my merry way on the gluten-free diet (complete with a referral to the hospital dietician), 3) go back to eating gluten for EIGHT MORE WEEKS and run a full panel of bloodwork again in August.
So here’s the thing. If I have Celiac, I want my son to be tested. When it comes down to it, the diagnosis/ruling out of Celiac is only important to me for that reason. I already know gluten is poison to my system…the gluten challenge proved that beyond a doubt. I can’t go through another 2 weeks (much less *8* weeks) of gluten hell. I just can’t do it. So, I opted for #1 & #2. Hopefully, the gene test is negative & Celiac is ruled out. If it’s positive, well, I guess I cross that bridge when/if I come to it. (Sidenote: if this is what “early” Celiac is like, I cannot imagine the misery so many of you endured when eating gluten!!!)
So, long story even longer, I’m wondering about the possibility of the villi damage being done by a stomach virus/SIBO/lingering stomach virus. The GI originally planned to take a sample to test for SIBO during the EGD, but wasn't able to (the only tube they had for the procedure is made of latex, I'm allergic). He mentioned a breath test as an alternative, but doesn't feel like that is a strong option at this point. Thoughts? Any insight?
Once again, I am so appreciative of you all - the opinion of those who have been- there-done-that- and-should-have-a-medical-degree-from-the-experience is HIGHLY valued by this girl!!