Unfortunately, I don't have any ideas, but just wanted to tell you I'm dealing with similar problems. I haven't been able to return to work, it's ridiculous Have you had your TTG retested or another biopsy? My TTG is still through the roof, so everyone thinks I MUST be getting gluten somewhere, but I (like you appear to be) am VERY VERY careful! My GI has no idea and has never seen someone's TTG stay over 200 for so long while on a gluten-free diet. So, as I said, I don't have any answers, I just feel your frustration, as I'm sure people will also tell you "you must be getting gluten somewhere"
Today I got the reports of my DD's one year follow up blood tests and her anti ttg iga tests are the same as they were at the time of diagnosis, very high positive (>290). Her last test was done in september 2011 and report was the same. After that report, we became super strict and everything for her was prepared at home right from scratch and i mean it. Absolutely, no eating out etc everything was followed completely with full honesty. when i told my DD about her reports, her first reaction was "Mamma, i didn't do anything naughty." She is careful...really careful. the entire family has gone gluten free so as to avoid all kind of cc. So, we did everything we could to the best of our knowledge. And here i am with the results. What do i do? Her thyroid, diabetes, cholestrol all tests are normal.
I understand sometimes other auto immune diseases can keep the antibody levels high, but what is it that i can test for? I don't see symptoms of anything else.
Can someone throw some light on what tests can be done? what are the related symptoms? My DD has shown great improvement in terms of overall health, height and weight etc after going gluten free. She was diagnosed through a biopsy though now i am getting a feel if the biopsy was done correctly or not whether she is really a celiac or not? She doesn't ever show any symptoms of getting glutened. My entire faith on her diagnoses has shaken. I feel so helpless. We would be meeting our doctor soon. Please throw any suggestions so that we can sort out this riddle. Its killing me now.
I have always been on this forum and got a lot from it. My big thanks to everybody for their support and suggestions.
I am in the same boat with high TTG a year later despite being extremely careful in a gluten-free household. I definitely have symptoms when glutened, though, and all my symptoms have not gone away.