Confusing Results

[Newfiegirl]

Hi all,

I was wondering if you can help set my mind straight!

When my oldest was only 2 her pediatrician was determined she was celiac. She went through blood work and it was negative. She was a failure to thrive etc.

She's 8 now and we decided to buy the Biocard for testing. She didn't want to do it by herself so we got two. One for her ... one for me. Hers turned out Negative, mine turned out a very light positive. Tested myself again and it still came positive.

Yes I've had symptoms since I was around 19 but never thought celiac. Some of them include C, D, belly pains, anemic, exhausted, extreme migraines, hair loss and recently tingly pinky finger and nausea.

Doctor scheduled blood work for iron, ATTG Anti-transglutaminase IgA etc and I got results today which is confusing.

ATTG <1.0 (<7 negative)

Ferritin 16 (12-300)

Doctor said my test results were fine. There was nothing wrong with me.

I'm confused how my Anti-transglutaminase IgA can be so low but I still get two positives on the Biocard test. Has this happened to anyone else? I'm so confused

[mushroom]

Welcome to the board, Newfiegirl.

The tests are not infallible. There are known false negatives. And you were only given one of the tests. You really need to have a full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

You especially need the total serum IgA because you could be a low producer, in which case it invalidates all IgA testing and they have to do the IgG versions for you.

There is also the endoscopy with biopsy. It is possible to be negative on the blood work and positive on this test. It is also possible to be negative on both blood and biopsy and still be celiac, or that you have non-celiac gluten intolerance, and not celiac disease. This is what is so confusing about diagnosing celiac.

I would ask your doctor to run the rest of the celiac tests, and make sure the DGP is included. This is the newest celiac test and the most specific for celiac. If these are negative, I would still do a gluten free trial for at least three months because these symptoms could certainly be from gluten.

But you were asking about the Biocard too. And I'm afraid I have no experience it with you. I hope someone else can deal with your Biocard results.

By the way, your ferritin is very low. You never want to be at the bottom of the range -- it means you are hanging on to the ladder with your fingertips

[Takala]

If your daughter has been on a gluten free diet all this time from age 2, then she should test out negative for the reaction to gluten, because it is not there any more, to be causing her problems.

[Newfiegirl]

Thank you so much for replying. I had to force myself to go to the Doctor to get the current results. I hate how they look at you in disbelief when you tell them how your feeling. I'll have to gain the courage again to ask for the rest of these tests.

The Biocard tests for anti-tissue transglutaminase (anti-tTg) IgA Antibodies. Is this the same as the Anti- transglutaminase IgA that I just had done???

I was thinking my ferritin was low. Funny how he never caught that even though I did tell him I was anemic before

Thanks for all your help. It is greatly appreciated!

[mushroom]

The Biocard tests for anti-tissue transglutaminase (anti-tTg) IgA Antibodies. Is this the same as the Anti- transglutaminase IgA that I just had done???

I was thinking my ferritin was low. Funny how he never caught that even though I did tell him I was anemic before

Yes, it is the same.

When it comes to testing, most doctors look only for things that are outside range. They don't think of the ramifications of being at the bottom of the range.

[Newfiegirl]

Thanks Mushroom!