Positive Anti Gliadin, Negative Transglutaminase

[Lisa RM]

My son, who is 18, has Down syndrome, hypothyroidism, lactose intolerance and osteopenia, was diagnosed with celiac about 1 and a half years ago. For years, he had GI symptoms (chronic intermittent constipation and diarrhea) and had very high antigliadin antibodies (over 80) but negative endomysial and transglutaminase. Last year, the transglutaminase went positive (30) and a biopsy confirmed celiac.

After more than a year on the gluten free diet, his transglutaminase is normal (1!!) but his antigliadin antibodies are still very high (have come down a little). Our endocrinologist believes he is still getting gluten exposure. Does anyone out there have a similiar story? I'm not sure how crazy I should get about hunting for gluten when I think his compliance is excellent.

[YoloGx]

Even the slightest exposure to gluten can create an auto immune response for someone with celiac. I suggest looking at your face and hand creams, shaving material, soaps and the usual suspects like old iron pans, toaster, wooden chopping boards and bowls, vitamin fillers etc. for wheat based tocopherols, starch etc. Another big killer is caramel flavoring or coloring which is in all kinds of things. Also CC is common if the foodstuff is made on the same equipment that handles wheat etc. There is a big list of these hidden contaminants on celiac.com.

He might also be getting exposed to gluten at his workshop or center if he goes to one. I know since my brother has the same thing. He is compliant at home but doesn't understand why he can't have Stoffer's or eat at Denny's with the group etc. since the social thing is big with him. Glue paste could also be a source. I have yet to track this down with my brother. He's always bringing home these pasted paper constructions. You would think they would be more aware since 12% of those with Down's have celiac, however enlightenment comes slowly.

Bea