Reasons For A Positive Celiac Blood Test That Is Not A Celiac Reaction?

[T.H.]

My daughter was diagnosed as a celiac 3 years ago. 1 1/2 years ago, she was retested via a blood test AND an endoscopy and she had completely healed.

 

Our house is completely gluten free, including cleaning products and even our pet food. My daughter has a severe reaction to gluten - hours of vomiting and a few days of misery following - so it's very easy to tell when she has gotten contamination. She's also homeschooled, so she's never away from one parent or the other for long enough that she could react to gluten and we wouldn't know.

 

I mention all this because at a recent doctor's appointment, she had a blood test again and this time, it was not only positive for celiac disease, it was a high positive. I'm still trying to find out from the doctor WHICH of the tests are high positive - they are not easy to get in touch with. She was tested because she has stomach pain that started soon after she went gluten free and has never gone away. This pain was present when she had her first testing and was all healed, and it is still present now.

 

My problem is that I KNOW this child is not getting major gluten in her diet. She gets so sick she refuses to even consider eating it. When she didn't know I was nearby, I've heard her cuss out friends for suggesting that she have 'just a bite' of something with gluten. She has mostly whole foods, almost no gluten-free products, and the products are all tested for gluten contamination. On top of that, she eats less gluten-free products now than she did when she had completely healed.

 

I know there are super-sensitive reactions to gluten, and she IS very sensitive, but this being a reaction to gluten really doesn't make sense to me based on our diet and our lifestyle.

 

So my question is this: does anyone have any ideas what could cause a test result like this that is NOT gluten?  Do you know what the chances of a false positive are on the various tests?

 

I need to find out in part because my daughter's doctor has been difficult to talk with on this issue, and isn't as celiac knowledgable as we would wish. She refuses to believe that my daughter isn't secretly sneaking out of the house and cheating on her diet, so she won't look for any other possible reason for the test result. We are working with her, looking at other doctors, and trying to find out what we can on our own.

 

Thanks in advance for any knowledge anyone has on this subject.

[kareng]

I think you need to get copies of those tests and see what was really positive, I have seen docs thinking odd things mean someone is eating gluten.

[nvsmom]

I know a positive tTG IgA can be caused be Hashimoto's, chronic liver disease, diabetes, as well as crohn's and colitis BUT they are not usually high results - just a bit above normal. If it is high, that is usually a celiac disease reaction.

 

The DGP and EMA tests are pretty specific to celiac disease. I have not learned about false positives being caused by other illnesses for those tests.

 

There is some info on testing on pages 10-12 of this report: Open Original Shared Link

 

Let us know what the test results are.  Good luck.

[T.H.]

Thank you  - appreciate the response. :-)