My knees just buckle for no reason, I have vertigo and IHave Neouropathy everywhere. Legs,arms,digestive tract,colen,and girly parts are even numb. My DR says it is Celiac Disease and I need a neurologist, and a biopsy for insurance so they will pay for the Immunoglobulin Infusion.
I am 1 yr. into the antibiotics for Lyme Disease and thought it was all finally going to get better. I had a lot of shingles during the lyme time. It went undiagnosed for ten years! dang docs never thought to do a test, so my shingles were chronic, despite daily valtrex.
So now I have the neuropothy everywhere, need enemas to poop because the colon is paralyzed and the villi are dead so I get no nutrients from my food. I cannot make heathy blood or anything else for that matter because of the severe malnutrition. I take vitamins galore and use a needle for B-12 so why does my DR want me to have Immunoglobulin infusions?
He says I am in the low 6% of Celiacs who react Nurologically if I consume Gluten and that is causing the Ataxia. I have stopped eating Flour,sugar, and gluten. I find that is the easiest way to avoid it. Just avoid flour and sugar. I understand It will take 2-3 years for the villi in the intestine to come back, IF...big IF..I adhere to this diet strictly, but why the infusion? I feel guilty because I read it takes one thousand bags of red blood to make 1 bag of white cells. Also, will the neropothy go away? I dont drink or do any drugs. exept a small dose of morphine at bedtime...and my legs STILL keep me up.Thanks...
i know how toough it is fighting through trying to be even just 'ok'
it sound like you have had alot of tests and dx's so far.
DO they mention doing a brain mri to look for lesion in your white matter or cerebellum artophy?
(having gluten ataxia does not have to have these findings though)
before i forget to mention, looking on the ataxia foundation site. there are goood threads about gluten ataxia and VERY SPECIFICC blood tests for it.
A person with gluten ataxia need not have celiac disease, so a biospy that can diagnose celiac will not nessicarily have a positive result. But that does not mean you do not have gluten ataxia.
it can seem confusion for sure.
If what you have is gluten ataxia and ffollowing a strickt g/f diet does not garentee an improvement of symptoms.
I hope you find your anaswers. This forum you see does not have alot of activity. I am no way an expert, but if i can help i will like too.
take care today, amo
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