#9206
Jacqueline ScarbroughJackie Scarbrough
Participant

Hi Nora, the genetic results are very overwhelming and definately very confusing (it was to me anyway).  I am definatley no expert but since it looks like you and I are close genetically in this area, I can tell you a few things that I've found out so far.  Yes, it seems as though you have the “double whammy” for non-celiac gluten sensitivity. 

There has been much research on the double DQ 1 by a doctor named Marios Hadjivassiliou.  It is mostly on neuropathy, which thankfully I do not have, and am hoping to avoid, having caught this before I have incurred the damage that is referred to in many of his papers.  Just google his name (good luck remembering the spelling! lol) and you can read many abstracts from his studies. 

On the “0501”, again I am no expert, but the way I understand it is that for DQ1 there are two subsets, you either have 0501 or 0601 (DQ5, or DQ6).  I actually have one of each, where it looks like you have two DQ5.  What the difference between DQ5 and DQ6 means clinically I really have no idea, we are both still double DQ1.  I'm not sure they really know what this signifies, other than there are slight differences in the makeup of those subsets.  DQ 3 is a different altogether, then there's also DQ2, DQ4 (the only hla NOT connected to problems with gluten), and DQ8.  I'm not sure if there's a DQ7(?)  They only connect DQ2 & 8 to celiac disease.

There is another thread where Dr. O explained to me the A vs B alleles, I'll try to link it for you…. /forum/all-gluten-free-all-the-time/celiac-test-was-inconclusive-what-now/#p787

If there is anyone else to shed light on any of this please chime in!