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Hi, 
I have searched archives and find many folks who report pins and needles
celiac neuropathy, but I only get severe muscle weakness, even my mouth and
eyes, cold hands and feet, aching legs and arms, ataxia.  Along with the
less dramatic sensory sensitivity (loud noises, etc) , irritability, mood
changes, brain fog.  This is after 4 1/2 yrs on strict diet, also cut out
other food intolerances, also on heavy B12.  the episodes seemed to be
related to gluten intake, but now I am very, very vigilent and still having
MS like attacks.  I was undiagnosed probably most of my life, about 24
years.  I am biopsy diagnosed. When I am not having attack, I have strength
and energy more than most. 

I have found that I can be recovering from an episode of this and then drink
a sugary drink such as gatorade and then I crash again, no strength, no
energy, even though blood sugar levels dont correspond.  All tests any doc
can think of come back normal (thyroid, diabetes, etc.).  I havent been to
neuro yet. 

I am now thinking that I will stick to a protien diet while on these
episodes or not eat at all in   order to get better quicker and not relapse.
 It seems to work for me.  Caffiene also seems to help pick me up sometimes,
but not others.  I am also going to try an exercise regime since inactivity
seems to correlate (and maybe presence of other cold/virus - I just read
about this on archives, may be true for me, too).  

I would like suggestions for a doc in the US (I live in Alaska, so I dont
know if I will find a neurologist here who will help) who can help with
diagnosis to be sure it is celiac peripherial neuopathy / ataxia.

I am also looking for evidece that other celiacs have this even after GF
diet, and looking for ANY ideas for treatment of symptoms besides GF diet,
B12, vit D, and eliminating other food intolerances (currently GF, apples,
dairy, soy, rice, potatoes, beef, pork, garlic).

I am also a busy mom of three little kids, also on special diets, so dont
have time to not be able to walk!

I will post this message at the brain talk celiac board as well. 

Thanks for any and all help, support.  I will summarize.

Emily Low, Cordova, Alaska

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