Gene Information Wanted! Please!

[happygirl]

Brian,

Thanks for sharing the information.

So you had positive bloodwork (including tTG?), a positive biopsy will villous atrophy, but you don't have either DQ2 or DQ8? You ARE special, then!!!!!!!

I think at some point, there was another non-gene person on the board. I dont think they are around that often.

Malabsorption is not solely caused by Celiac, so it in itself does not diagnose Celiac.

(Do not think at all that I am questioning your diagnosis, I don't really care why someone decides -or has it decided for them by test results!-that gluten is bad for them, I am happy they have found the answer. I'm just interested in the path that people have gone on to figure it out!)

Laura

[GlutenWrangler]

Rez,

So what you're saying is that nobody ever gets results that say that they do not have a celiac or gluten-sensitive gene? From what I've read, the only known genes related to celiac disease and gluten-sensitivity are DQ2, DQ8, DQ1, and DQ3. So if someone didn't have any of these genes, how would Dr. Fine say they have a celiac or gluten-sensitive gene?

[chrissy]

someone posted a list once of all the genes that dr. fine believes are connected to gluten intolerance------and there were so many of them that almost everyone would be considered gluten intolerant.

[GlutenWrangler]

I'd like to see that list. Do you know where to find it?

Laura,

I'm not sure if it is accurate, but from what I've read, most of the people who are diagnosed with celiac disease who do not have DQ2 or DQ8, have the DQ1 gene. I have DQ1 and DQ3. The literature says 1-2% of celiacs do not have DQ2 or DQ8. So I'm guessing it would breakdown something like this:

DQ2: 90%

DQ8: 8%

DQ1: ~1.5%

Other: ~0.5%

Put in those terms, and considering the number of undiagnosed celiacs, it probably isn't as rare as initially thought. But again I could be wrong.

-Brian

[lonewolf]

I'd like to see that list. Do you know where to find it?

Laura,

I'm not sure if it is accurate, but from what I've read, most of the people who are diagnosed with celiac disease who do not have DQ2 or DQ8, have the DQ1 gene. I have DQ1 and DQ3. The literature says 1-2% of celiacs do not have DQ2 or DQ8. So I'm guessing it would breakdown something like this:

DQ2: 90%

DQ8: 8%

DQ1: ~1.5%

Other: ~0.5%

Put in those terms, and considering the number of undiagnosed celiacs, it probably isn't as rare as initially thought. But again I could be wrong.

-Brian

Sorry to butt in here, but this topic really interests me. I read somewhere (I'll try to find where, I think it might have been on Enterolab's website or a link from there) that 1% of non-DQ2 or 8 Celiacs had DQ3, subtype 7, which is almost exactly like DQ8. My son, who is not officially diagnosed Celiac, has a double copy of DQ3,7 and is DEFINITELY gluten intolerant at the least.

[Gentleheart]

If a person does the complete enterolab test. If they show 1 celiac gene and 1 gluten intolerance gene, definite IgA antigliadin activity, a positive antitissue transglutaminase score and definite malabsorption, what OTHER DISEASES beside celiac disease could produce those same test results? Since skeptics don't think these tests can diagnose celiac, I would like to know what the other choices are. What else could cause the same damage? The malabsorption has to come from something.

[GlutenWrangler]

I completely agree. Other diseases can cause malabsorption, but not malapsorption in concert with genetics and positive antibodies. But I don't think it is absolutely necessary to have one celiac gene. I think it is completely absurd for doctors to say that a person needs DQ2 or DQ8 in order to have celiac disease. It's ridiculous, especially considering the celiac disease is one of the most underdiagnosed illnesses in the world. For all we know, someone could have no celiac genes and no gluten-sensitive genes and still have celiac disease.

-Brian

[GlutenWrangler]

Liz,

I found the information that you were talking about. Here's what it says:

It should be noted that although the older serologic nomenclature is less specific in the sense of defining fewer different types, in some ways it is the best expression of these genes because it is the protein structure on the cells (as determined by the serologic typing) that determines the gene's biologic action such that genes with the same serologic type function biologically almost identically. Thus, HLA-DQ3 subtype 8 (one of the main celiac genes) acts almost identically in the body as HLA-DQ3 subtype 7, 9, or other DQ3 sub-subtypes

I have HLA-DQ3 subtype 9, and HLA-DQ1 subtype 5. Having read this, I think it would make more sense if my numbers looked more like this.

DQ2: 90%

DQ8: 8%

DQ1: ~1%

DQ3: ~1%

Again, I could be way off. I noticed that some doctors say that people with DQ2's and DQ8's make up 98%, and others say 99%. I have no idea which is correct. Anyway there it is.

-Brian