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purplemaryjane added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsMy Gene Tests - So What's My Risk?So I have assumed myself to have NCGI after negative serology a couple of years back. I am doubting this now, thinking back, so I figured maybe I'd have the genetic test done, and if low risk, not bother with the gluten challenge and testing, and just stop worrying.
Here's my results, hoping someone out there can tell me what my risk is (like 2%, 5% etc) since I can NOT for the life of me find this info.
Just fyi, I do have ankylosing spondylitis (diagnosed 2 1/2 years ago, went off gluten then after negative serology). I also have HLA-B27, feeling like I somewhat got the short end of the genetic lottery stick!!
Results: Positive for celiac disease-associated HLA alleles. (done by Kimball genetics)
Results: DQ2 (DQ!a*05/DQB1*02): positive
DQA1*05:01 or *05:05 detected
DQB1*02:01 or *02:02 Detected
DQ8 (DQB1*03:02): Positive
I know 20-30% of the population have DQ2, but I wonder how many have DQ8? And how many people have both, like me?
If anyone has wise words, I'd love to hear them. In the meantime, I'm 2 months on lots of gluten, feeling tired, irritable, poor concentration, itchy all over, some mouth sores, joint pains, lots of the big C, gassy, upper abdo pains after eating and kind of heart burn feeling, and little (not itchy) bumps all over my neck, back and shoulders. I am having my labs done this week, then booking an endo regardless of the results. Then, going back off gluten, no matter what!! I don't do strict gluten avoidance though (as previously thought NCGI), and don't want to if I don't have to. I felt fine with that ....
Wishing I had my results already - waiting is no fun!!
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purplemaryjane added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsGluten Challenge. Ugh.So I was "mostly" off gluten for 3 years (not worry about crumbs in the peanut butter, eat some icing off the cake at work, still eat soy sauce etc), and feeling good. I had classified myself as NCGI because I had some negative TTGs before going off. I decided to do the genetic test in the hopes that I didn't have a celiac gene, and would then feel quite fine doing my "mostly" diet and not causing any long term health problems vs doing a poorly controlled celiac person's diet. Lo and behold ... DQ2 AND DQ8 possible. Oh well, so much for that strategy.
Now I'm at the 2 month mark of full gluten challenge - hasn't been fun. My ibs is worse, but the worst is my skin - I have overall itchyness, random mouth sores, swollen scaly patch on the edge of my lip that won't go away, fatigue, irritability, and somehow my husband is still hanging in there with me! My usually clear skin is covered in tiny little bumps (not exactly acne, although I have some of that on my face too) but if you look close it's millions of little skin coloured bumps, like keratosis pilaris but all over my neck, shoulders and back. Yuck!! I haven't changed anything else. I always feel like scratching (but don't). My joint stiffness is worse (I also have ankylosing spondylitis and am on a biologic and celebrex).
I was planning on doing 2-3 months, but I'm so done!!! Going for my labs this week and then probably I'll book an endoscopy asap.
In the meantime, I have been checking things off my gluten "bucket list" - this week I had mcnuggets and fries (yum! eat that about once every 3 years anyways), and a mini Cinnabon. In heaven. Food cravings, however, are out of control. I need my test results back before I gain too much weight!!
Anyways, I'm amazed I made it this far, can't wait for my skin to clear up. Anyone else get these funny bumps all over?? I've had it on the backs of my arms before, but this is ridiculous (and gross).
Hopefully I'll be posting some negative test results, and happily going back to my "celiac-lite" diet and feeling way better, and clearing up before the warmer weather and lighter clothing arrives!!
Thanks for reading
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