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Old 04-06-2010, 06:56 AM
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darlindeb25 darlindeb25 is offline
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Join Date: Aug 2006
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darlindeb25 darlindeb25 is offline
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darlindeb25's Avatar
 
Join Date: Aug 2006
Posts: 744
15 yr Member
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Or, you need to have your B12 checked. Even if you aren't celiac, the gluten is BIG time damage for us, and double DQ1's are more prone to neuropathy. I have been taking B12 for 5 yrs and it did significantly slow my neuropathy progression. It doesn't work overnight, it takes time...was over 2 yrs before I noticed a big improvement. When you have your B12 tested, ask for the number, don't let them tell you it's in normal ranges without getting the number. Our normal ranges, and the doctor's normal ranges often times are very different.

I too am double DQ1---HLA-DQB1,0602 and HLA-DQB1,0603. We also often times are super sensitive...which with your list of no soy, no casein, and no yeast, means you are super sensitive. Be very careful with "gluten free" labeled foods, they are not actually gluten free, they can be anywhere from 5-20ppm of gluten and labeled gluten free. I can't eat any of them, at this time, I am totally grain free. When glutened, my neuropathy symptoms flare.
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Deb

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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