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Readers Respond: Do you have gluten ataxia or neurological symptoms due to gluten?

Responses: 10

By

Updated March 20, 2012

From the article: What Is Gluten Ataxia?

People who have gluten ataxia experience problems with balance and gait due to gluten ingestion — according to researchers, the gluten protein literally attacks and damages the part of their brains responsible for motor control. Although gluten ataxia seems to be a rare condition, many people with celiac disease and gluten sensitivity frequently report neurological symptoms. These symptoms can range from gluten-induced brain fog to peripheral neuropathy and can include problems with balance and coordination.

Have you experienced problems with your balance, coordination or gait that you attribute to gluten damage? If so, have you been diagnosed and what was your diagnosis? Did your symptoms improve once you went gluten-free? Share your story.

I am doing some research for my sister

My sis has had many. undiagnosed symptoms. She has been diagnosed w/celiac disease. a few years back,she had ceased up. like a seizure, her hands and feet twisted, she was unable to walk. for an hour or so. her body was stiff as a board. Then latter on. Her eyes would droop. her eye lids would collapse, her doctor ran test. one thing she was unable to do was touch her finger to her nose. she shakes at times and know she has aniexty for several weeks. i'm worried about her. she isn't her self anymore. any suggestions.
—4mysis

Past Ataxia

I also have gluten ataxia that was so severe I used a cane everyday and then a wheelchair as it progressed. I am happy to say that after following a completely gluten free diet, I am almost back to my old self.
—Guest Malia

a name for my syndrome?

For over 20 years, I have known that ingesting of gluten affects my neural function : my right side becomes very weak, there is tingling and burning, difficulty using mouth muscles to speak... But lately, I have had relapses without being able to point to any known source of contamination. I am wondering if other substances can also provoke this reaction?
—Guest Anne-Marie

Gluten Ataxia

For the past 20 years, I suffered with peripheral neuropathy, migraines, visual disturbances, stomach problems etc. About 5 years ago I became very ill, with vertigo, tia's, staggering, slurring my speech. My Neurologist finally recognized these as symptoms of Gluten Ataxia, put me on a gluten free diet, the symptoms disappeared immediately. I eat out a lot and even though I'm careful, I can tell right away if I got something with gluten in it. I'm doing much better now and enjoying life more, I'm glad someone finally realized what was wrong with me. Good luck to you all.
—Guest Rose

Ataxia

I was tentatively diagnosed with gluten ataxia just this year. I say tentative as my neurologist admitted that he knows very little about it and most of his colleagues would have heard next to nothing about it. Gluten ataxia is still 'on the fringes' he said. That being said, I have celiac in my immediate family and never experienced any of the classical symptoms of celiac. However, three years ago I started having extreme bouts of vertigo and I would tilt over when I would walk or stagger. An emergency MRI was performed which showed that I had a brain tumour (benign) but it was not near any of the balance centres. Over the past two years, I progressively worsened to the point where I was having seizure like episodes that would last anywhere from five minutes to hours. In these attacks, my head would wobble back and forth on my head while my torso would rotate in oscillations. Speech at these times was slurred. My understanding now is that these were / are ataxia attacks.
—Guest Pan

Still Wobbling

I have gone on the gluten free diet again to give it another try. I began it again on 30th april. I am seeing the dietician on Thursday and I will see if I improve as my walking and balance are very bad. The Tesco have a gluten free shelf and I go every week now to get the correct foods. So I will write up again in a few months if there is any improvement.
—Guest marie cooper

wobbling

Yes my mobility is very bad. Dr. Hadjivassiliou is my doctor. I don't adhere to the diet.
—Guest marie cooper

gluten sensitivity

(Editor's note: Translated from Italian): I'm Italian and I suffer from gluten sensitivity, I have always suffered from disorders such as diarrhea, abdominal colic, difficulty swallowing, and neurological disorders such as difficulty in speaking properly. All tests were negative for celiac disease. I also had problems with muscles and walking and I was losing my balance and equilibrium, my muscles were very flabby and no sports made ​​me build the muscles. After many years a doctor has told me that maybe I have a gluten sensitivity and a month later the muscles of the legs and my arms have grown a little more and I do not lose my balance, but when I eat gluten, the symptoms come in 3 hours. I agree that I find myself with gluten ataxia symptoms. Hi Pierina from Chioggia (Venice) Italy.
—Guest Pierina

YES, I have Gluten Ataxia

I was diagnosed with Gluten Ataxia and Celiac Disease in January 2009. I was in 51 then and am disabled because of the ataxia and how it's affected my short term memory and language issues. I have a hard time understanding people talking to me and finding words. My neurologist, GI doc and family practice doctor are all on board with believing and supporting me. I also have neurological pain from the gluten ataxia. I'm much better now being gluten free for three years. However if I accidentally eat even a microscopic amount of gluten I'm back where I was 4 years ago, bed-bound, having to use a cane or wheelchair to get around. This lasts at least three weeks. It use to be two weeks, so not good news for me. I am very grateful to get the diagnosis and have much of my functionality back. Thanks for writing this article. I hope people can get an earlier diagnosis and be able to heal entirely instead of waiting years and never fully healing. Get the word out! This is a real diagnosis.
—Guest Serafina57

commonsense

Everyone and anyone with Gluten Syndrome must follow a 100% gluten free diet....no cheating, no exceptions! It is misleading for a doctor to say one condition under the large umbrella of Gluten Syndrome calls for stricter compliance than another condition. As the brilliant and progressive Dr. Rodney Ford says, Gluten Free eating means zero gluten!
—liveloveandpeace

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