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
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.