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Other Double Dq1s?

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Enterolab informed me (earlier this summer) that I have 2 copies of the DQ1 gene, making me a "double DQ1", non-celiac gluten intolerant person (based on negative blood tests/biopsy).

I know there's a lot of other DQ1 people out there, & I'm wondering if there's already a link somewhere for us to talk about what this means & how gluten has affected us neurologically?

If not, how about it we start one?

Anyone who's interested in talking about this or sharing their experiences would be welcome information for me. I clearly have the neurological reactions to gluten (when I had to eat the stuff

for a 6-week "gluten challenge" for my biopsy I thought I was having a stroke at one point - scary!)

and am so glad I'm not eating it any more.

Looking forward to hearing from all of you!

Diagnosed Fibromyalgia & osteoarthritis in multiple joints 12/06

Diagnosed gluten intolerant through dietary trials 8/07

Enterolab positive for gluten, casein, soy, egg

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

Gluten free 8/10/07

Casein free 8/27/07

Soy & egg free 9/8/07

Eggs back again (whoo hoo!) 11/08

Diagnosed chronic fatigue syndrome 12/09

Starting various supplements/vitamins in hopes of feeling better!

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Hi, I am double DQ1 - I mostly do not eat any grains & no dairy, I am more Paleo diet than anything else. I have a grandson that is also double DQ1, he is 11 now & has failure to thrive & his 9 year old sister is also double DQ1 - she is now overweight & has lost all the enamel on her teeth, this year, she also has a lot of asthma type problems & itchy hives - oh all three of my son's kids have health issues but because my son & dil will not let them be gluten-free - too much trouble...although I spent six months buying them everything to get started & doing recipes etc etc etc.. sigh...

then I have a sister age 54 that had positive blood work & is double DQ1 & she cannot eat dairy either. I have a friend that tested positive via biopsy, she has osteo & a couple other things & then she tested thru Enterolab also, & is double DQ1 & she cannot eat dairy either.

we all take B12 !!!! I think if you have DQ1 you better be on B12 !!!!

I also think that if you have DQ1 you will have depression, on some level if you are eating gluten

my dil - who we know has at least one DQ1, takes antidepressants & has dyslexia - which got better when she was gluten-free for 6 months, but then got worse again when she went back on gluten... oh well such is the decisions that people make for themselves - a donut here or there...

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