Celiac without HLA genes

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michaelt
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Celiac without HLA genes

Post by michaelt »

A friend of mine got diagnosed with CC about 5 years ago. Also diagnosed with soy allergy at the Enterolab about the same time.
He recently did an HLA and it was negative.
He also did Endomysial Antibody IgA, Gliadin Peptide IgG, Gliadin Peptide IgA and Tissue Transglutaminase IgA - all negative.

Are there any other blood tests?

I read on the Celiac Center page from the Chicago University (http://www.cureceliacdisease.org/archiv ... nes-for-it) that Dr Guandalini says that you can't have Celiac without the gene.

According to him if you don’t have the genetic markets for celiac that you don’t have it, and there’s never been any documented cases of anybody having celiac without the genetic markers.

Does anybody know somebody with Celiac who doesn't have this HLA gene? Or can you have something that has the same symptoms as Celiac, but doesn't have the gene - what would it be called and how would you test for it?

thanks
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tex
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Post by tex »

Hi Michael,

To the best of my understanding, there are no additional blood tests that are useful for diagnosing celiac disease. Unfortunately, the medical community has absolutely no blood tests available for detecting non-celiac gluten sensitivity. The only tests that will reliably and accurately detect non-celiac gluten sensitivity are the stool tests offered by EnteroLab.

Dr. Gandalini is only partially correct. The problem with his narrow-minded view is that DQ2 and DQ8 do not define the entire universe of genes that predispose to celiac disease. They are merely the most common celiac genes (and they have been officially medically described). There are apparently additional less common celiac genes that have not yet been discovered and described. And they invalidate his claim, because no one can test for them if they haven't yet been described.

Dr. Scott Lewey is one of the top celiac and MC authorities in this country, and one of the few who actually have a deep understanding of these two related diseases. Here's a quote from one of his articles that addresses this particular issue:
However, there is a new study that reports that being negative for DQ2 and DQ8 does not completely exclude the possibility of celiac disease, especially in men. Previous studies have well documented blood test negative Celiac Sprue, also more common in elderly men with long-standing severe disease. Since DQ2 or DQ8 is almost universally present with the specific blood tests tissue transglutaminase and anti-Endomysial antibodies are present it is not surprising that individuals without DQ2 or DQ8 that are negative for these two blood tests are being reported that meet criteria for Celiac disease.
Ten Facts About Celiac Disease Genetic Testing

Here is his reference:

HLA-DQ and susceptibility to celiac disease: evidence for gender differences and parent-of-origin effects.
Does anybody know somebody with Celiac who doesn't have this HLA gene? Or can you have something that has the same symptoms as Celiac, but doesn't have the gene - what would it be called and how would you test for it?
We have a few members who have both celiac disease and MC. Except for them, almost all of the rest of us are just as sensitive to gluten as the average celiac, but we always test negative to the celiac blood tests, because we have non-celiac gluten sensitivity. For the majority of the general population, the celiac blood tests are almost totally worthless, because they will only detect fully-developed celiac disease, and they are totally incapable of detecting non-celiac gluten sensitivity. The pathetically poor sensitivity of the celiac blood tests is the reason why the average length of time between the onset of symptoms and an official medical diagnosis of celiac disease is still 9.7 years in this country.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
michaelt
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Location: United States

Post by michaelt »

ty tex, as always you have great info
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tex
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Post by tex »

You're very welcome,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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