Here are my gene test results, so it seems it is NOT celiac. Which is good news for my relatives. I guess this narrows what I have down to NCGI, but my GI doc is doing an endo in a couple weeks anyway....
I'm not doubting the interpretation, but can anyone decipher what this means? I get what the first two are and am lost after that.
---------------------------------
Interpretation --- The patient does not have the HLA-DQ variants associated with celiac disease.
More than 97% of celiac patients carry either HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302) or both.
"I believe that if life gives you lemons, you should make lemonade... And try to find somebody whose life has given them vodka, and have a party" - Ron White
""I like the cover," he said. "Don't Panic. It's the first helpful or intelligible thing anybody's said to me all day." ― Douglas Adams, The Hitchhiker's Guide to the Galaxy
“Life may not be the party that we hoped for…But while we’re here, we should dance.”
I was told if I don't have the genes, I ain't celiac (I don't have the genes). Does anyone have any information about the other 3%?
0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more! - Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol - Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks. - Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods. - Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI) - Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving. It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein
So my GI seems to be sure I am celiac negative, given my blood tests were also neg. I'm at a loss as to why he's doing the endo, plus I'm supposed to start a gluten challenge on Sunday. Why would I do a gluten challenge and biopsy if he is convinced I'm negative anyway?
I tend to think that I'm probably not in that "less than 3 percent" group -- I mean those are pretty slim odds. I have to accept that all of the most sophisticated tests say I'm not celiac. I guess the biopsy will be the last test.
I'm kind of freaking out about what to do next because I still can't eat gluten and I seem to have a wheat allergy, as in the puffy face and all. So little is known about NCGI... Are all the potential complications the same? Do I need to be as strict? I don't mind being gluten-strict in my own home, but I do sometimes feel bad giving friends and family the once-over in their own kitchens. Can I lay off them a little if I don't have celiac??
----
Also, does anybody know what the last four gene tests mean, if anything?
Hla-Dqa1 -- 01
Hla-Dqa1 -- 02
Hla-Dqb1 -- 0303
Hla-Dqb1 -- 0603
OK answering some of my own questions here . It looks like the Hla-Dqb1 -- 0303 is the same as DQ9? Is that right? And DQ9 is now possibly linked to a "pre-disposure" to celiac and/or gluten intolerance:
Actually, I've read studies wherein they've found up to 6-8% (I think) being negative for both the alpha and beta chains of DQ2 and DQ8 (which includes, by default, DQ7.5), the study had a very large cohort as well. Let me see if I can dig it up...
EDIT: Here are a couple I've read a long the way.... still digging for the study that showed only 93% of the celiac cohort showed DQ2 and/or DQ8.
Don't bend; don't water it down; don't try to make it logical; don't edit your own soul according to the fashion. Rather, follow your most intense obsessions mercilessly.
~Franz Kafka
I guess this narrows what I have down to NCGI, but my GI doc is doing an endo in a couple weeks anyway....
