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confused Community Regular

i also had the celiac panel done when i sent in for the enterolab test. I wanted to be sure on all counts. Well I just spoke to my doctor and i am positive for celiac. I guess I am one of the few that didnt need to have the DQ2 or DQ8 gene.

paula


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lonewolf Collaborator

So what are your genes? I don't have DQ 2 or 8, but I swear I have Celiac (just not willing to do a gluten challenge to prove it). I have at least one copy of DQ3 subtype 7 (my son has two copies of it, so one had to come from me).

confused Community Regular
So what are your genes? I don't have DQ 2 or 8, but I swear I have Celiac (just not willing to do a gluten challenge to prove it). I have at least one copy of DQ3 subtype 7 (my son has two copies of it, so one had to come from me).

I am

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

paula

lonewolf Collaborator

Thanks. That's very interesting. I've read that DQ3, sub. 7 is almost exactly like DQ8 - I wonder if that's the key. My double DQ3-7 son is very gluten intolerant and it affects his digestive system and his behavior. His tests came out negative, but I think there wasn't enough damage done to show positive, since he's been gluten lite for most of his life.

JerryK Community Regular
i also had the celiac panel done when i sent in for the enterolab test. I wanted to be sure on all counts. Well I just spoke to my doctor and i am positive for celiac. I guess I am one of the few that didnt need to have the DQ2 or DQ8 gene.

paula

Interesting. I took it as fact when I didn't have DQ2 or DQ8, that I didn't have the Celiac gene.

I don't want to know bad enough to go back on Gluten and get a biopsy...but I am certainly interested, being another DQ 3,1 Subtype 7....

Just goes to show you how much we don't know...j

CMCM Rising Star

Well, doctors have really just skimmed the surface of knowledge about celiac disease. While most identified celiacs have DQ2 or 8, not all do. There are other unknown factors at work. With identical twins, who would have the same DNA, there are cases where one twin has celiac disease and the other doesn't. So there are definitely other factors involved. And there have been documented, endoscopy proved celiacs who have neither of the genes. Given the fact that relatively few Americans have been diagnosed thus far (those diagnosed tend to be those with the worst symptoms...thus they seek help and thus they get a diagnosis). But remember the analogy of the iceberg....the diagnosed cases are the tip, and the undiagnosed are the mass under water. So the data on celiac disease is incomplete at this point.

Just remember: those without the celiac gene can be just as sick as those with the gene, and a gluten free diet can help all who react to gluten. If you do not have the officially recognized celiac genes, that does not mean being gluten-free won't help you.

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    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
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