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What Does All This Mean?

Bis-quit

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Bis-quit Rookie
Bis-quit
Posted

I got real sick last August, I was having D up to 12 times per day. After all the testing my results "suggested" I "might" have microscopic colitis. Celiac blood tests were negative.

I went on and tested thru enterolab and my results said that I DO NOT possess the main HLA-DQB1 celiac gene, however I do possess two copies of a gene that predisposes me to gluten sensitivity.

I recently seen a new GI doctor and he has me scheduled for an endoscopy April 4th, he wants to check me for celiac and he stated that microscopic colitis can go hand in hand with celiac.

My big question is: Since enterolab shows that I do not have the celiac gene, is there any real possibility that I can still have celiac? Is the endoscopy a big waste of money if I do not possess the celiac gene performed thru enterolab?

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mushroom Proficient
mushroom
Posted

Hello and welcome to the forum.

If I were you I would go ahead with the endoscopy. It is just another part of the picture, another piece of the jigsaw puzzle. Oftentimes things don't match up. The blood tests are not perfect, the biopsies are not perfect - there is an approximate 20% error rate on both. The gene testing is not perfect because other genes are recognized in Europe as being celiac genes. Enterolab is not perfect -- Dr. Fine has never published his research in a peer review journal. And microscopic colitis and celiac do frequently co-exist.

You seem to be a person who wants as much information as possible, so why not add this piece of information to the picture and see if it becomes any less blurred? :)

MsCurious Enthusiast
MsCurious
Posted

I got real sick last August, I was having D up to 12 times per day. After all the testing my results "suggested" I "might" have microscopic colitis. Celiac blood tests were negative.

I went on and tested thru enterolab and my results said that I DO NOT possess the main HLA-DQB1 celiac gene, however I do possess two copies of a gene that predisposes me to gluten sensitivity.

I recently seen a new GI doctor and he has me scheduled for an endoscopy April 4th, he wants to check me for celiac and he stated that microscopic colitis can go hand in hand with celiac.

My big question is: Since enterolab shows that I do not have the celiac gene, is there any real possibility that I can still have celiac? Is the endoscopy a big waste of money if I do not possess the celiac gene performed thru enterolab?

Can you post the genetic test results?

Bis-quit Rookie
Bis-quit
Posted
  • Author

Can you post the genetic test results?

The results were:

HLA-DQB1 Molecular analysis, allele 1 0501

HLA-DQB1 Molecular analysis, allele 2 0502

And the exact wording from the results:

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

ravenwoodglass Mentor
ravenwoodglass
Posted

Just because you don't have one of the two commonly associated celiac genes doesn't mean you can't have celiac. While DQ2 and DQ8 are considered to be the two main genes there are firmly diagnosed celiacs that don't have one of those 2 genes. I am one of them. Make sure you continue to eat gluten until your done with all testing and then give the diet a good strict try no matter what the results.

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