Mixed Results for Child; Doc Says no celiac disease

[akzd]

Hello!  We had our first (only?) pediatric GI visit today upon getting a "high" read on two results from a Celiac Panel for my 7yo (results listed below).  The GI said that, although the tTG-IgA was high, since the Endomysial AB IGA was negative then my child likely didn't have Celiac Disease.  He said they both had to be positive.  This is counter to what I've been researching (including the helpful Mayo Clinic algorithm flow chart).  After much discussion we agreed to re-run the test using *their* labs... and he said he was guessing that the tTG-IgA was going to come back negative.  I was so surprised at the turn of the conversation that I forgot to ask specifically about the Anti-Gliadin IGG AB result (and he didn't bring it up!)  I would probably accept an argument by the doc that these were "weak positives" but his attitude was that the totality of the results did not indicate celiac disease.  Also, he said that they see tTg-IgA numbers in the thousands... so with that reference 26.5 *does* seem low... but when the lab results say that 15 is the max "normal" it's confusing!

I don't want my child to have celiac disease but I also don't want to be dismissed by one doctor.  We had the panel run because there are almost daily complaints of stomach aches and it was done alongside a CBC as precautionary.  Further, we found from an xray (due to an unrelated issue) that she had "severe constipation" although she is regular (outputs typically once/day... but maybe that's not normal for her!)  Note:  She has never had gluten removed from her diet (yet).

I'd appreciate any informed feedback on the test results!  I'm not sure what I'm going to do if the next round of tests comes back "negative" as he predicts. Do I just assume the first round was faulty and move forward with a gluten-full life?

Test                                               Results      Units      Flag Reference Range

ENDOMYSIAL AB IGA                 Negative                   Negative

GLIADIN AB IGA                         8.1              U/ml       0.0-15.0             

ANTI-GLIADIN IGG AB              19.6            U/ml       0.0-15.0       

t-TRANSGLUTAMINASE IGG     12.0            U/ml       0.0-15.0 

t-TRANSGLUTAMINASE IGA      26.5           U/ml       0.0-15.0

IGA                                              199             mg/dl     70-400

[Darren]

I'm not very familiar with how the "scores" work other than a celiac having high numbers. I have celiac. Is it possible that your child has intolerance instead of celiac ? Not sure if intolerant folks have similar blood test results or not. Perhaps that's what it is and if so, that's much better than having celiac!

[squirmingitch]

There is no test for non celiac gluten intolerance. Those people test negative on the celiac serum panel. Hopefully a test for that will be developed soon but as of now there is none.

I am not great at telling you exactly what each of these tests means ie: which is for what but they are all different tests for celiac & any positive can not be ignored. Well, docs ignore them just like in this case, but they should NOT! 

Okay, let's take the positive tests:

The t-TRANSGLUTAMINASE IGA  that was 26.5:

I'm copying & pasting about that test from this site:
Open Original Shared Link

When positive this test is considered 90 percent sensitive at accurately diagnosing celiac disease because the presence of these antibodies correlates highly with the immune system attacking and destroying the intestinal lining, known as villous atrophy.

The test is not only sensitive (90%) but highly specific (98%), the latter meaning that it won’t tell you that you have celiac disease if you don’t. There is a “loophole” to the sensitivity feature however. Much damage needs to occur to the lining of the small intestine before this celiac disease test shows positive, making it a poor early marker for celiac disease. One doesn’t want to have to wait until they are at an advanced state of intestinal destruction. This test won’t show positive until damage is severe. Additionally not all celiac sufferers demonstrate villous atrophy and therefore this wouldn’t be the best celiac disease test for them. TTG- IgA is also not a test for gluten sensitivity.

As to the ANTI-GLIADIN IGG AB positive test, as I understand it, the IGG is slower to rise & slower to fall in celiacs than the IGA. This test is used to detect compliance with the gluten free diet on follow ups of celiacs. This does not mean your daughter is negative -- quite the opposite; she is reacting.

I would suggest you find a new doc because this one clearly does not understand. Your daughter should be referred for an endoscopy.

The negative tests do not outweight a positive result. A positive is a positive and your daughter has tested positive on one of the most important & specific to celiac.

[cyclinglady]

It just takes one positive, like Squirmingithc said.  I would get a second opinion!  

Personally, I tested positive to only the DGP IGA, yet I had moderate to severe intestinal dmamage.  My TTG was negative.  Weird, but true.  I test the same way on follow-up testing too.  That is why good doctors will order the complete panel.  Or if they are restricted to one test for screening, they'll use the TTG.