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  • Did You Know? Gluten Ataxia and Celiac Disease

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    Reviewed and edited by a celiac disease expert.

      Gluten Ataxia usually starts off with mild symptoms, and gradually become worse over time. When left untreated the condition could lead to permanent damage.

    Balance can be an issue for those with gluten ataxia. Image: CC BY-SA 2.0--KOREA.NET - Official page of the Republic of Korea
    Caption: Balance can be an issue for those with gluten ataxia. Image: CC BY-SA 2.0--KOREA.NET - Official page of the Republic of Korea

    Celiac.com 06/12/2020 - What happens in Gluten Ataxia?  Well, first, we want every celiac person to know what Gluten Ataxia is to ensure we are on the same "wave length". Gluten Ataxia is an autoimmune disorder in which the antibodies that are released in sensitive individuals when digesting gluten attack part of the brain by mistake. Since Gluten is a protein found in wheat, rye and barley, one would think that gluten exposure would have nothing to do with the brain, but since most people have no trouble with digesting this protein, others have a gluten sensitivity or celiac disease.
    In some cases the body's reaction to gluten can become quite severe. In these cases, the body starts to attack the central nervous system which may cause gluten ataxia. People who have issues digesting gluten may also develop digestive problems that cause damage to the small intestine. 
    Gluten Ataxia usually starts off with mild symptoms, and gradually become worse over time. When left untreated the condition could lead to permanent damage.  There is also evidence that people who suffer from gluten ataxia will show signs of cerebellar atrophy. Cerebellum atrophy is the shrinkage of the cerebellum.  The cerebellum if the part of the brain located in the back of the head above the neck. The cerebellum is responsible for movement and has a direct impact on activities such as balance, speech, posture, walking and running.  Gluten Ataxia is a relatively new discovery and thus not yet widely known to doctors and other medical professionals. This can make a diagnosis and proper treatment difficult to obtain.
    However, there are groups of researchers dedicated to spreading information abut this rare condition. As mentioned, it is a progressive condition, which means that symptoms may start off mild and almost unnoticed, and gradually progress to being debilitating.  The symptoms of gluten ataxia are similar to symptoms of other ataxia conditions, which can make it tricky to get an accurate diagnosis. The symptoms appear in basic movements, such as walking or arm control, unsteady gait, difficulty walking, and loss of precise movement skills such as the ability to write or button a shirt.

    Parents should be on the lookout for ataxia symptoms in  their kids. Children with celiac disease, specifically those in their early teens, would likely benefit from mental health evaluation. Strict adherence to the gluten-free diet does not mean you will never get gluten ataxia, especially for those who are not strict enough with their gluten-free diets.  

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    Some researchers have estimated that potentially up to 41 percent of all people with ataxia of unknown origin may have gluten ataxia.  Other studies have indicated much lower numbers. A review of mental health studies indicated a prevalence of roughly 23 percent in patients with unexplained ataxia. 

    In the last eight years or so the celiac community has finally been made aware of "gluten sensitivity" as a legitimate diagnosis. Twenty-five years ago you would not have heard of it, but now it has been given a rightful place along side of celiac disease and dermatitis herpetiformis. The same is true for gluten ataxia, its recent discovery will allow those who have it to say: "Finally, finally, someone is finally listening to me!" 

    Read more at medicalnewstoday.com

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    I have had gluten ataxia and biopsy diagnosed Celiac for about 20 years. I had difficulty walking, seizures, and severe memory issues. The first neurologist told my husband I was crazy and needed to see a psychiatrist. We did that. Fortunately we found a good psychiatrist. The psychiatrist said I had some depression due to the fact I was so ill, but my physical symptoms were real. We also contacted the Celiac Disease Center at Columbia Presbyterian, Dr Green told the neurologist that my issues were real and suggested IvIG treatments while waiting to see a neurologist that specialized in Celiac.  The IvIG helped with my balance, walking and memory to the point I was able to take care of myself and regain some independence. After several years of treatments every 6-8 weeks, our insurance stopped paying for the treatments. They were too expensive to pay for on our own, so the treatments stopped. My problems returned in full force after just a couple months. While waiting for an appointment our family physician suggested a medication that is a form of a vitamin B complex. My blood accepts B vitamins but my brain can not use it in the typical form. Cerefolin is a form of vitamin B that is already broken down in away that my brain will absorb. It is a prescription, of course not covered by insurance, but for me it is a wonder drug. I was able to return to working full time, going to school taking care of my family. I am now in my mid 60s and retired. I am still doing well on Cerefolin and a gluten free diet. Never give up.

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    I truly believe that my mother had gluten ataxia. She passed in 2001, only 5 years after getting an MS diagnosis. She was only 44 years old. I got a Celiac diagnosis in 2007 after 10 years of stomach issues.

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    I was diagnosed as Celiac when I was 45, now I am 57. Years and years of steady decline to include ataxia and aphasia. Many of the misdiagnoses I received included, white matter brain disease, lyme disease and the worst part was my elbows covered in Dermatitis Herpetiformis while doctors performed celiac panels and endoscopies without noticing nor did they ever check for DH. I figured it out on my own after research and the near death of my youngest child who was emaciated and the subsequent death of my mother who suffered from ataxia, aphasia, and heaven forbid Alzheimer's, which I don't believe. 4 foot 11 and wasting away and the best the doctors could come up with was Alzheimer's.

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    I have always told every doctor that I have seen I can tell when I will have a gluten reaction by the onset of severe depression that precedes the intestinal or skin reaction. If all these many scientists would listen to their patients we would all be diagnosed sooner and lead healthier lives. I self diagnosed myself with the help of my daughter who worked in her college library. The college had a medical school. A self diagnoses of dermatitis herpetitaformis after 10 years of suffering and many treatments of steroids and antibiotics and wasting syndrome. I've been gluten free for 37 years. I seldom buy or make gluten free products relying on a diet of wild caught fish, vegetables and some fruit and certain nuts. I still work and am the healthiest person my age I know. I'm a walking miracle and I am grateful for my celiac disease diagnoses as many, too many die without proper care.  

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  • About Me

    I am a freelance journalist and a retired registered nurse and live in Canada. I write regularly for Celiac.com's Journal of Gluten Sensitivity and several secular magazines, as well as for five or six religious magazines, both Protestant and Catholic. Since retiring as a nurse, journalism, my second university major, has been a life saver for me, both my poetry and articles.

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