Test says no, but body says Yes?

[Travel Celiac]

New here, and came for answers to this.  I was diagnosed in the Summer of 2007, at the same time two of my kids also tested positive. Actual doctor, actual tests. Have lived as clean as possible for 17 years, with the inevitable accidents (and symptoms and recovery), none recent, thankfully.  I have accepted that I am celiac and have lived accordingly – as have my now-grown kids.

Last week, along with loads of other tests, my primary ordered a Celiac Disease Antibody panel and I just saw the results.  The summary stated "no antibodies detected," although my IgA total was quite high at 425.  The Tissue Transglutaminase IgA was less than <1.0. 

My question is whether antibodies would be found in my body after all this time living gluten-free?

To be clear, if I get gluten and do NOT know it, I will get sick later no matter what. So any psychological element is right out of it; I get nailed every time if there's gluten in my food. Later, we will trace everything and find it.  Small wonder I work so hard to keep gluten out of my diet. I am a senior citizen, and watch my health very carefully.  But now this test seems to indicate I don't have celiac disease... or do I?  LIke the title says, the test says no, but my body says yes and has for 17 years. Any thoughts on what's going on?  Happy to answer question. Thank you.

[trents]

Welcome to the forum, @Travel Celiac!

The high total IGA does not indicate that your celiac disease is actively flaring up. Total IGA is not a test for celiac disease per se but rather is test given to determine if you are IGA deficient, which you are not. IGA deficient people will experience artificially low individual IGA antibody tests such as the tTG-IGA and can result in false negatives. 

The other question is why is your total IGA count high? That can indicate other health issues besides celiac disease so I suggest you research that question and also talk to your physician about it. Here is an article that explains the various tests that can be run to detect celiac disease and the significance of the total IGA test:

Having said all that, I gather that for some reason you are under the mistaken impression that, having been diagnosed with celiac disease some years ago, your recent antibody test should still show elevated levels if you actually do have celiac disease, at least when you have accidental gluten exposure. I think you misunderstand how this all works and what the testing is designed to detect. 

When someone has celiac disease, the consumption of gluten triggers an autoimmune response that, typically, causes inflammation in the lining of the small bowel. This inflammation produces specific antibodies that can be detected by serum testing specifically designed to look for these antibodies. Upon the onset of celiac disease, it can take weeks or months of consistent exposure to gluten for the serum antibody levels to build up to the point where they are detectable by the tests. Once gluten is  removed from the diet, inflammation begins to subside and antibody levels begin to drop. An occasional gluten exposure will not result in restoring antibody levels to detectable amounts once they have receded to normal levels after going gluten free. Again, it takes weeks or months of consistent gluten ingestion for the antibody counts to reach sufficient levels to produce a positive test result.

Yes, you still have celiac disease but it looks like from your recent tTG-IGA test result that you are doing a good job with the gluten free lifestyle.

[knitty kitty]

Welcome to the forum, @Travel Celiac!

You have to be consuming gluten for your body to trigger the autoimmune response and produce anti-gluten antibodies.  If you're not consuming gluten, the autoimmune response is not triggered and you won't produce anti-gluten antibodies. 

Celiac Disease is genetic.  Your genes don't change.  You will always have the Celiac genes whether you eat gluten or not.  

Your negative tTg-IgA  shows that you are successfully keeping gluten out of your diet.  You are doing very well on that point, but you still are Celiac.  Be proud of your accomplishment!