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ShannonA

Results Are In

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Well I got my DNA results and I do not have the celiac gene so that does rule out celiac but I do have 2 gluten sensitive genes:

 

HLA-DQB1 Molecular analysis, Allele 1  0501

HLA-DQB1 Molecular analysis, Allele 2  0503

 

Serologic equivalent: HLA-DQ 1,1  (Subtype 5,5)

 

Although I have had many symptoms before going gluten free, to the extent I could tend to my children, many symptoms have cleared up except for the headaches/migraines/feels like brain on fire.  I have been gluten free for 11 months, corn/dairy/soy/nuts free for 8 months.  I still have neurological symptoms and can't tolerate anything except whole foods and 1 fruit, apple.  I actually got head relief when I had a stomach virus because I didn't eat for 3 days. From what I researched, this lab result with a DQ 1 showed that neurological  symptoms are likely to occur.  What specifically got damaged, my central nervous system? I am still on pain meds around the clock, injections of muscle relaxers and anti-inflammatory, why is it not better yet? Is it reversible damage? None of my doctors believe this to be the cause because I don't have celiac disease but if I eat anything that I am not tolerating now I go back to my previous symptoms, dizziness, fatigue, feeling out of my body, walking off balance, numbness in my legs and the feeling of inflamed brain on fire.  Why is this still occurring if I have been off of gluten for so long? Am I considered Non-celiac gluten intolerant? Also my daughter was tested and has 1 gluten sensitive gene and 1 celiac gene. We thought for sure she got the celiac gene from my because my husband has no symptoms of anything.  Come to find out she got the celiac gene from him, not me.  Should he go gluten free also? Thank you

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Well I got my DNA results and I do not have the celiac gene so that does rule out celiac but I do have 2 gluten sensitive genes:

 

HLA-DQB1 Molecular analysis, Allele 1  0501

HLA-DQB1 Molecular analysis, Allele 2  0503

 

Serologic equivalent: HLA-DQ 1,1  (Subtype 5,5)

 

Although I have had many symptoms before going gluten free, to the extent I could tend to my children, many symptoms have cleared up except for the headaches/migraines/feels like brain on fire.  I have been gluten free for 11 months, corn/dairy/soy/nuts free for 8 months.  I still have neurological symptoms and can't tolerate anything except whole foods and 1 fruit, apple.  I actually got head relief when I had a stomach virus because I didn't eat for 3 days. From what I researched, this lab result with a DQ 1 showed that neurological  symptoms are likely to occur.  What specifically got damaged, my central nervous system? I am still on pain meds around the clock, injections of muscle relaxers and anti-inflammatory, why is it not better yet? Is it reversible damage? None of my doctors believe this to be the cause because I don't have celiac disease but if I eat anything that I am not tolerating now I go back to my previous symptoms, dizziness, fatigue, feeling out of my body, walking off balance, numbness in my legs and the feeling of inflamed brain on fire.  Why is this still occurring if I have been off of gluten for so long? Am I considered Non-celiac gluten intolerant? Also my daughter was tested and has 1 gluten sensitive gene and 1 celiac gene. We thought for sure she got the celiac gene from my because my husband has no symptoms of anything.  Come to find out she got the celiac gene from him, not me.  Should he go gluten free also? Thank you

I would take your whole home gluten free.  And neuro problems are usually the last to clear, and the easiest to bring back.  So a gluten free home may be nec. for your well being.  Try an elimination diet.  Good luck

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I too have very similar neurological symptoms and tested negative for celiac. But I've been 95% better on the gluten free diet. I'm on an elimination diet to determine other food intolerances. What I find is that my neuro symptoms come back if I eat something I'm intolerant of. I had no ideas the nightshades were part of that (tomato, red pepper). So could there be something else in your diet that keeps the symptoms lingering?? It is a very long process figuring out the other foods, but it does work. So far I get symptoms with: prunes, vinegar, almond butter, dairy. Soy, corn, nightshades. Vertigo and tingling seem to be the most common side effects (and bloating!)

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