I'm relieved to report that the colonoscopy and endoscopy showed no abnormalities that the doc could see. He did take another duodenal biopsy. He definitely thinks I'm sneaking gluten. I'm happy that I don't have anything serious going on, but unhappy because the pain and all the D definitely wasn't in my head. And I already tried the elimination diet. When I was on rice, carrots, and chicken I still had D and pain. Same with when I replaced rice with sweet potatoes.
So tomorrow I'm making the calls on all of my lip balms to verify that they're gluten free (most of them have vit E), then I'm tossing any remaining items that may be suspicious unless the company confirms gluten-free status. I've gone off all of my supplements for over a week now and it hasn't helped (they all have clean ingredients and are marked free of gluten). So now I'm going to call the pharmecutical companies again to check the meds I've been taking. I've been working so hard to be gluten free, I just can't imagine that I brought this on myself.
I also bought two books on Amazon regarding celiac. Still can't believe that my local B&N didn't have anything on it but cookbooks.
Anyways, thanks for the support - any new ideas would definitely be appreciated! It's been a rough month.
Jen....I seriously think you should see an allergist or naturopath to be tested for other food allergies/intolerances. I think you are probably not getting any gluten because you are taking it seriously and being very careful. People really get hung up on the idea they are being glutened and then develop fears about eating.....as you mentioned yourself. It may take longer for some to heal but if you are not ingesting gluten, the pains should not be there. Your tTg might take awhile to come down but pain and discomfort should not be there, at this point. It really sounds like other foods are also giving you a problem. This is usually the point where people jump ship and go to see alternative docs because the medical profession will, indeed, think you are cheating. They only concentrate on one thing and that isn't going to help you.
The other issue with the still elevated tTg is other autoimmune problems can cause this. Hashimoto's thyroid, liver disease are but a few. I am not saying you have these additional problems but they are strongly associated with celiac disease and will elevate your tTg.
I hope you feel better soon....hang in there because it can test your patience.