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horsegirl

Got My Test Results

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I just got my results from Enterolab, & everything was positive.

Plus, the gene tests showed I am positive for the HLA-DQ 1,1 genes (2 copies).

(Specifically: HLA-DQB1, allele 1 06xx

and HLA-DQB1, allele 2 06xx).

RATS!!!!!!!!!!

No wonder I've had so many severe neurological symptoms, rather than the more "typical" GI/tummy problems (which I've had, but to a much smaller degree).

Now, I'm worried because this means my daughter (3 1/2 years old) also has at least 1 copy of the HLA-DQ 1 gene too. I know I need to get her tested, but I need to process this first.

AND, I also have the anti-casein antibody (21 units, with normal range being <10), so I have

to contend with the gluten-free and casein-free diet.

Anyone who can offer support, ideas, suggestions, hugs, etc, etc to help me deal with this would be much appreciated. I'm going for the EGD/biopsy tomorrow, so we'll see if there's intestinal damage too, although I've only been back on gluten for 6 weeks (was gluten free for 5 months before then).

Wish me luck!

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I just got my results from Enterolab, & everything was positive.

Plus, the gene tests showed I am positive for the HLA-DQ 1,1 genes (2 copies).

(Specifically: HLA-DQB1, allele 1 06xx

and HLA-DQB1, allele 2 06xx).

RATS!!!!!!!!!!

No wonder I've had so many severe neurological symptoms, rather than the more "typical" GI/tummy problems (which I've had, but to a much smaller degree).

Now, I'm worried because this means my daughter (3 1/2 years old) also has at least 1 copy of the HLA-DQ 1 gene too. I know I need to get her tested, but I need to process this first.

AND, I also have the anti-casein antibody (21 units, with normal range being <10), so I have

to contend with the gluten-free and casein-free diet.

Anyone who can offer support, ideas, suggestions, hugs, etc, etc to help me deal with this would be much appreciated. I'm going for the EGD/biopsy tomorrow, so we'll see if there's intestinal damage too, although I've only been back on gluten for 6 weeks (was gluten free for 5 months before then).

Wish me luck!

Did you have malabosrption?

paula

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Hi horsegirl, I offer you a lot of hugs & all my sympathies...

I am also double DQ1 & yes, most people do not get it that gluten makes us sooooo sick.

you will be much healthier and will not have to go thru a lifetime of damaging your body (&the brain) like I have.

since my mother died of colon cancer & I know so many other double DQ1 people that are so sick I wonder if it is the DQ1 & DQ3 people that get all the other diseases like cancer and the other auto immune illnesses & maybe the DQ2 & DQ8 people only get celiac.

& yes, I think that 90% of the American Northern Europen type people should not be eating gluten or dairy.

oh yea, most of us DQ1 people cannot do dairy either & we have a lot of other food allergies. Lucky you if you do not have any other allergies.

Don't worry about your little girl, she will be healthier not eating gluten & the times are a'changin so no telling what the food supply will be like in 30 years. wheat is a cheap inexpensive way to feed the masses...

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Guest Doll
Hi horsegirl, I offer you a lot of hugs & all my sympathies...

I am also double DQ1 & yes, most people do not get it that gluten makes us sooooo sick.

you will be much healthier and will not have to go thru a lifetime of damaging your body (&the brain) like I have.

since my mother died of colon cancer & I know so many other double DQ1 people that are so sick I wonder if it is the DQ1 & DQ3 people that get all the other diseases like cancer and the other auto immune illnesses & maybe the DQ2 & DQ8 people only get celiac.

& yes, I think that 90% of the American Northern Europen type people should not be eating gluten or dairy.

oh yea, most of us DQ1 people cannot do dairy either & we have a lot of other food allergies. Lucky you if you do not have any other allergies.

Don't worry about your little girl, she will be healthier not eating gluten & the times are a'changin so no telling what the food supply will be like in 30 years. wheat is a cheap inexpensive way to feed the masses...

Actually, DQ2 and DQ8 *are* linked with other autoimmune diseases. Especially Type 1 diabetes, MS, and RA.

http://research.dfci.harvard.edu/tcell/kai%20pdfs%20/34.pdf

http://www.direct-ms.org/pdf/MolecularMimi...rpfennigMHC.pdf

There is shared genetics among Celiac and all of these other diseases.

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I just got my results from Enterolab, & everything was positive.....<snip>

Now, I'm worried because this means my daughter (3 1/2 years old) also has at least 1 copy of the HLA-DQ 1 gene too. I know I need to get her tested, but I need to process this first.

Hi Horsegirl -

I just got results back from Enterolab yesterday, too, for my ds and myself. We're already gluten-free, along with my dd, who was the first to be diagnosed with a gluten sensitivity. It's a family affair for us (and many others.) Both my dd and myself also react to casein, so we're gluten-free/cf. At first I found the cf part to be difficult, but we've become accustomed to it. The thing that has helped me the most is just not keeping dairy-type things that we used to like in the house. If my son or dh want ice cream, they can go out for it. I buy sorbets, juice bars, etc., to keep in our freezer at home. I also only buy cheese that my dd doesn't like - it makes it easer for her. I've also been combing my cookbooks and online sites for flavor-full recipes that are gluten-free/cf, and making oversized batches of whatever I find. Not having quick convenience meals and snacks was very hard for me at first, but when I have a fridge full of leftovers, there's always something to eat when we're in a hurry. It's a lifestyle change, to be sure, but I'm starting to see that it's not all bad. My kids think my cooking is better these days (blush) and I definitely pay more attention to what goes in our mouths now. We were always pretty healthy eaters, so I never supplemented with vitamins. I now have both kids and myself on multivites, just to make sure our bases are covered.

Anyway - welcome (to the ranks of the gluten sensitive!) I wasn't completely sure that I belonged here either (except as mom to a gluten-senstive girl) until yesterday. Good luck with your endo....let us know what it shows. And I hear you about processsing before you address your child's potential issues. One step at a time works very well in this world (gluten-free or otherwise.)

Rho

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