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JoshB

Dq-Testing Services

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So, there's a lively discussion going on another topic, and one of the questions there revolves around what "DQ" testing provides. My previous assumption was that DQ testing worked pretty well, and that it gave you a specific fix on your DQ type. We have another assertion, though, that DQ tests sometimes only tell you whether DQ2.5 or DQ8 was found. If true, this would be totally inadequate for celiac disease screening.

So, what services have people used to determine their DQ types? What sort of results did you get back?

I've used 23andme, and they told me I was homogeneous for DQ2.5. I believe with more work (looking up variations yourself in a public database) that it should be possible to determine most if not all DQ variations. The cost is $99 up front and I think $5/month; you're forced to sign up for twelve months.

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So, there's a lively discussion going on another topic, and one of the questions there revolves around what "DQ" testing provides. My previous assumption was that DQ testing worked pretty well, and that it gave you a specific fix on your DQ type. We have another assertion, though, that DQ tests sometimes only tell you whether DQ2.5 or DQ8 was found. If true, this would be totally inadequate for celiac disease screening.

So, what services have people used to determine their DQ types? What sort of results did you get back?

I've used 23andme, and they told me I was homogeneous for DQ2.5. I believe with more work (looking up variations yourself in a public database) that it should be possible to determine most if not all DQ variations. The cost is $99 up front and I think $5/month; you're forced to sign up for twelve months.

My doc used LabCorp, and I got a "you are positive for HLA DQ2 and negative for HLA DQ8". That's it. Plus, I had to ask her for the gene tests...she wasn't even going to order them and my GI doc didn't even care what they said.

I hate to be a Debbie Downer, but the fact is, Josh, that most people really don't care what their genes are, they just want desperately to feel better. Most people don't have the money and/or knowledge to carry on extensive genetic research about their condition. Doctors just want to push pills and collect your co-pays and send you on your merry way. They don't care about mapping genes and finding cures (unless they are in research, which we all know there is very little of for Celiac disease and non-Celiac gluten-intolerance). Only big pharmaceutical companies care about that stuff, and since there is no drug fix for Celiac disease, we are screwed. :(

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OK, so Labcorp does not seem as useful as one might hope. Better than I feared though, as there is some suggestion that there are tests which won't tell you if you're 2.2, only 2.5. Knowing only "2" is not as useful as 2.5/2.2, but at least it's better than not spotting 2.2 at all. I'd be really interested in hearing from anyone about what a "negative" result looks like from them. Also, has anyone ever gotten a DQ7.5 result? It seems pretty useless if they don't identify 7.5

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I've been completely unable to find a LabCorp DQ test sample, but I did find one for Quest:

http://www.questdiagnostics.com/brand/business/hla_immu_gen/files/17135X.pdf

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So it seems that if you're using Quest you can determine your DQ type, not just whether it is 2 or 8.

I think it's worth noting that it doesn't just tell you, however. You have to look up what your "A" and "B" values mean for yourself. I'm certain that my GP would not have known what to make of this, and that if it came back and didn't say "DQ2" but did have sub-types for DQ7.5 that he would have missed it and said it was impossible for me to have celiac disease.

So my take-away would be to use Quest for now if you have the option, and to be sure to get a copy of the test for yourself.

I'm pretty disturbed that these tests aren't better. I'm thinking that if I asked someone from a testing-company about it they'd say "Yeah, but it's pretty good. This is going to be correct for 97% of cases!" -- That, frankly, is nowhere near good enough. Three percent of the celiac-positive people taking a DQ test that doesn't report your sub-types are going to be told "Nope. Not you", essentially sentencing them to die by lymphoma.

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I'm still waiting on my genetic test results, done through Prometheus. I'm a bit skeptical only because on the paperwork they indicate the test is for DQ2/DQ8, but I don't have the results so I'm not sure what it is going to look like. Prometheus and the GI doctor I saw were both recommended by the local celiac support group. Additionally, they informed me that LabCorp was not a reliable celiac testing lab. Maybe it depends on the area you live in, I can't really say.

I am very interested in whether I carry the genes because I have children, and one day will have grandchildren, therefore this gene is of significant importance to me, as I'm sure it is to many other people. A few hundred dollars give or take is a small price to pay considering what's at stake. If one of my children does not have the gene I won't have to be as concerned with celiac, or the other way around. I feel it's a very small price to pay for that knowledge that could save the lives of my children and the generations that follow. I'm sure other parents, particularly with small children, would feel the same.

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I'm still waiting on my genetic test results, done through Prometheus. I'm a bit skeptical only because on the paperwork they indicate the test is for DQ2/DQ8, but I don't have the results so I'm not sure what it is going to look like. Prometheus and the GI doctor I saw were both recommended by the local celiac support group. Additionally, they informed me that LabCorp was not a reliable celiac testing lab. Maybe it depends on the area you live in, I can't really say.

I am very interested in whether I carry the genes because I have children, and one day will have grandchildren, therefore this gene is of significant importance to me, as I'm sure it is to many other people. A few hundred dollars give or take is a small price to pay considering what's at stake. If one of my children does not have the gene I won't have to be as concerned with celiac, or the other way around. I feel it's a very small price to pay for that knowledge that could save the lives of my children and the generations that follow. I'm sure other parents, particularly with small children, would feel the same.

Please be aware that there are other genes associated with celiac. Just because you don't have DQ2 or DQ8 doesn't mean you can't have celiac and pass the associated genes on to your children.

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