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I'm struggling to know if I was even tested for the same things my daughter was, and which specific genes I do have, since apparently her test was more specific to genes that predispose to gluten sensitivity and mine only looked for those that predispose to celiac?? My best guess is that these results are telling me that I don't have a DQ2 or DQ8 gene, so the gene my daughter got from me must be the DQ1 aka DQ5. But I'm pretty confused.
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I think you are understanding it right. You are not as confused as you think. At least no more confused than the rest of us... or at least me. My brain turns to mush with all the letters and numbers of genetic testing, but I think I've got a grasp on the big picture. The naming nomenclature has apparently morphed over the years, and the terms used in blood vs tissue typing do not match exactly either.. all leading to a lot of confusion.
It is true that
when they do blood test screening for celiac disease, they only look for the main celiac genes, DQ2 or DQ8. The villous atrophy needed for a dx of celiac disease is very highly linked to the main celiac genes (95% will show one of these two genes, and I guess they don't care about the other 5%
). I have heard from several biopsy proven celiacs over the years who have HLA DQ1, but apparently they represent less than 5% of those with celiac disease/ villous atrophy. It is possible to do complete HLA typing by blood, but I guess it is a cost saving measure to test only for the MAIN celiac genes... because "celiac" docs typically don't consider gluten sensitivity outside of celiac disease as worth treating. This IS changing, but not fast enough. I hate that some people are told that gluten can't possibly be the problem just because they lack the main celiac genes!
Enterolab does broader testing, and tells what HLA type you DO have even if you don't have DQ2 or DQ8. This is one reason why I suggest people have the genetic testing done via Enterolab. My daughter and I both have double copies of HLA DQ1, which became of special interest given the work of Dr. Marious Hadjivassilou on gluten sensitivity in neurological disease.
According to Dr. Fine, and a lot of anecdotal patient reports, gluten sensitivity is possible in just about any HLA genetic type. This comes down to the distinction between gluten sensitivity and celiac disease.
Hadjivassiou's research relating to gluten sensitivity that presents as neurological disease (most of his research w/ gluten ataxia) has found 20% of his patients have HLA type DQ1, and the remaining 80% have one of the main celiac genes.
Further explanation here:
http://jccglutenfree.googlepages.com/genetictesting
http://jccglutenfree.googlepages.com...sceliacdisease
Enterolab carries a lot of information, too, about genetic testing. Scan the page for this question:
Why are gene results so complicated, and which genes predispose to gluten sensitivity/celiac sprue?
https://www.enterolab.com/StaticPage...rpretation.htm
Hope this helps!