I am newly diagnosed gluten intolerant/possible celiac.. with dramatic weight loss/GI issues that preceeded me going to a GI dr for help..Anyow, the week i went gluten free, and my intestinal symptoms seemed to start improving, i started getting crazy neuro symptoms..

my right knee felt weak, then a week later my forearms started aching really badly, then a day or so later I got weakness in the tips of all fingers and the base of my thumbs (which has not gone away and that was 6 or so weeks ago). i was waking up all night long with "dead leg and arms"sensation like they were asleep and that hasn't resolved either..
now that asleep/tingly feeling is in my shoulders and now even my tongue is wierd, a little slurred speech and swallowing feels odd.. Anyone have this??

I have had EMG, MRI head neck and blood work.. my EMG showed peripheral neuropathy (motor and sensory), MRI's were normal, bloodwork normal except a high B12 (in the 1000), high B6 (double upper limit of norm- was on supplements), and positive ANA (1:80)

I am a 31 yo female... I know the medical community doesnt seem to really think there is a relation between gluten/celiac and neuro issues, but it seems like from looking online that a lot of people do have a connection.. so curious what yall think! (oh yea I cut out dairy and caisen too- i was twitchy all over my body,and had wierd drunk like ataxia feeling after eating caisen for a few days and realized it so no more of that)!
thanks in advance!

I have a wonderful neurologist whom truly believes in the link between gluten intolerance and neuropathy.

As the gluten is leaving your system and it's reactions are calming, you will notice other symptoms the gluten may have been hiding. Your neuropathy may go away, or it may just stop progressing, no one knows for sure, each person is different. A B12 level of 1000 is a good level to stay at with neuropathy, mine is 1899 now, totally approved by my neuro. I have to take 5000mcg of B12 to keep it there. Watch out for B6 though, high levels of B6 will cause neuropathy symptoms and worsen the ones you do have. I would not take so much B6 if I were you. I too have a positive ANA, same as yours. I, of course, am not 21! I am old enough to be your mom!

Stay with gluten free though, it's the best thing for you, especially since you have noticed improvements so quickly. Feel free to email me anytime, I have been gluten free for 11 yrs.

yup be careful with the B6....sometimes the tests don't show a true picture, ie if you can't methylate the pyridoxine....the blood level will be artificially high in a sense....was you supplement P5P or pyridoxine?

Anyone in the medical profession who doesn't think there is a link between gluten and neuro issues is an horribly uninformed. I am a lay person with a decent amount of smarts and I can say 100% that after going gluten free I have not suffered from depression/sadness, multiple ADD symptoms and some minor OCD symptoms. An actual cc brings it all right back.