Advice On Test Results

[dania]

Hi, I was wanting some advice on my test results.

 

In Sept. 2013, I had the TTG IgA test done and my result was: <2 (reference range: <20)

However, I had been gluten-free for 2 years at that time so obviously that result is not going to be accurate.

 

Then I had the TTG IgA test done again in May 2014, after eating the equivalent of at least 2 pieces of bread every day since Jan. 2014. My result was: 5 (reference range: <20)

 

Is this significant, or not definitive? I tried to get further tests done at the same time (for ex. IgA EMA) but the lab wouldn't do them. TTG IgA is the only one they would do. I don't know what my total serum IgA is either so that's not very helpful. (Although there is a note on the results saying "IgA deficiency may lead to a false negative result however, the optical density of the anti-TTG result is such that this is unlikely.")

[nvsmom]

Welcome to the board, Dania.  

 

It looks like you are negative for celiac disease but with just one test run, you can't be sure.  As you said, having a total serum IgA is a must so you can know for certain if your result is valid. 1 in 20 celiacs is deficient in IgA, which is more than the regular population, so ideally you should have that run.

 

The tTG IgA is not a perfect test and can miss 5-25% of all celiacs. As you know, your first test was invalid because you were gluten-free. Your second test would suggest that you do not have celiac disease, but what if you are one of the 5-25%? I wish more doctors realized that.

 

The EMA IgA is very similar to the tTG IgA but it tends to be positive when the damage is more advanced. It is very unusual to have a positive EMA IgA when your tTG IgA is negative _ I wouldn't worry about that one too much.

 

If you can, request more tests, and the tests you want are the tTG IgG, DGP IgA and IgG, and the total serum IgA.  Some people are positive in the deaminated gliadin peptide tests rather than the tissue transglutaminase tests, and others are positive in IgG based tests rather than the IgA based tests even if their total serum IgA levels are normal. More tests would be a help.

 

That being said, I live in a city where it is VERY hard to get any tests run besides the tTG IgA - they only do the EMA IgA if you had a positive tTG IgA - so I understand your frustration there. Your only other options would then be to push for the endoscopic biopsy, or go back onto the gluten-free with the assumpyion that the test may have missed you (it could happen) or you have non-celiac gluten intolerance (NCGI).

 

Good luck with whatever you decide to do!