Iga Deficiency And Persistent, High Antibodies To celiac disease

[jmeikle]

I was diagnosed with Celiac Disease nearly 3 years ago - by biopsy and blood tests. Despite a strict gluten free diet, I have had persistently high celiac disease antibodies. Despite this, a second endoscopy showed that the damage to my intestines was nearly completely healed. After that second endoscopy my GI doctor mentioned that I was IGA deficient, but did not really explain to me what that meant and didn't seem to have any explanation about why my antibodies were so high (apart from suspicions about my claims to be gluten free). Because of my ongoing skin rashes (palms, elbows, ankles), I went to an allergist, who explained to me that the IGA deficiency means that I am susceptible to even the slightest amount of gluten - which he believed explained the high antibodies and rashes. I do have to eat out at restaurants a lot for work, and know that I definitely get accidental doses of gluten that way (but my GI doctor didn't think that could cause such high antibody levels). Does anyone have any views on this?

[ravenwoodglass]

Being IGA deficient will usually cause false negatives with gluten IGA testing. If your antibody levels are still high it is likely you are still getting gluten somewhere. Have you checked all meds and supplements? Have you eliminated gluten from toiletries? Are you eating from gluten free menus at restaurants or trusting stuff is gluten free? Since you also have a rash that your derm thinks is gluten related you should also eliminate iodine for a while as iodine will keep the antibodies active in the skin.

[jmeikle]

Thanks for your reply. I don't take any regular medications or supplements, and have checked the ones that I do take, as well as all my lipsticks and toothpaste. I order from gluten free menus whenever they are available and take pains to explain which ingredients might contain gluten when ordering in restaurants that don't have them (eg, soy sauce). The allergist I mentioned thought the IGA deficiency allows even trace amounts of gluten to 'leak', as he said the IGAs protect the gut, which seems feasible in terms of explaining the high levels of antibodies - since I know that I do get accidental doses of gluten from time to time at restaurants (for example after eating at our local Asian restaurant in January, using their wheat free sauce, I got sick a few hours later and am still sporting the resulting skin rash). Plus the second endoscopy showed the damage as mostly recovered despite the high antibodies. Thank you for the iodine suggestion - I will try eliminating that next.

[T.H.]

Might also help to call up all your food and hygiene products and see how gluten-free they really are. At first, I was just calling/checking to see if things were 'gluten-free,' and then I found out that was not at all working for us.

Many companies are now calling their stuff gluten free when it's really just 'no gluten added...on purpose.' If a company doesn't test, then you really have no idea how much gluten is in the product. Ingredients can get gluten cc anywhere: the fields, the harvesters, the shipping, the milling, the processing, the packaging.

Also, even gluten-free companies are not created equal, so you can get more gluten with some companies' products. Some have food that tests below 20ppm of gluten. Some test below 10ppm, some below 5ppm. So you could have 1 piece of gluten-free bread that is 20ppm and you'd have the same amount of gluten as 4 pieces of the 5ppm bread.

When we were still not healing, we ended up having to do the whole company calling thing, and it's been a real eye opener. I was really surprised at how many companies don't test at all. I really love when a company tells me that their product is gluten free because none of the ingredients are gluten. Which means, exactly, nothing...as every single one of us who has ever eaten in a restaurant and gotten gluten cc knows very well, ya know?

Shauna