Jump to content



Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up
  • Yvonne (Vonnie) Mostat, RN
    Yvonne (Vonnie) Mostat, RN

    Did You Know? Gluten Ataxia and Celiac Disease

    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.

    Did You Know? Gluten Ataxia and Celiac Disease - 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.  



    Celiac.com Sponsor (A12):






    Celiac.com Sponsor (A12-m):




    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



    User Feedback

    Recommended Comments

    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.

    Link to comment
    Share on other sites

    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.

    Link to comment
    Share on other sites

    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.  

    Link to comment
    Share on other sites
    Quote

    DESCRIPTION CerefolinNAC®  is  a prescription  medical  food  for use only  under  the  supervision  of a physician  for the  clinical dietary  management  of mild  cognitive  impairment  and is  specially  formulated  to  meet  the  distinctive nutritional requirements  for this  condition. Each  CerefolinNAC®  caplet  contains  

    • 6  mg  of  L-methylfolate  Calcium  (as  Metafolin®)  and  90.314  mg  of Algae-S  Powder  (Schizochytrium)***,
    •  2  mg  of Methylcobalamin  and  
    • 600  mg  of  N-Acetyl-L-Cysteine.

    INGREDIENTS N-acetyl-L-Cysteine,  Silicified  Microcrystalline  Cellulose NF,  Algae-S  Powder  (Schizochytrium  Algal Oil [Vegetable source],  Glucose  Syrup  Solids,  Mannitol,  Sodium Caseinate  (milk),  Soy  Protein,  High  Oleic  Sunflower  Oil, 2% or less  Sodium  Ascorbate,  Tricalcium  Phosphate, Tetrasodium  Diphosphate,  Natural Flavors,  Soy  Lecithin, and  Mixed  Natural Tocopherols  and  Ascorbyl  Palmitate [as  antioxidants]),  Polyvinyl  Alcohol,  Croscarmellose Sodium  NF,  Titanium  Dioxide,  Polyethylene  Glycol  3350, L-methylfolate  Calcium  (Metafolin®),  Magnesium Stearate  (NF,  Vegetable  Source),  Talc,  Methylcobalamin, Beet  Powder Red  (color),  Caramel  FCC  (color),  Carnauba Wax.  

    Contains  Milk  and Soy

    CerefolinNAC®  caplets  do  not  contain  lactose,  yeast  or gluten. CerefolinNAC® is  a  prescription medical  food for  use only  under  the  supervision  of  a  physician. Medical foods  are  intended  for a patient  who  has  a limited  or impaired  capacity  to  ingest,  digest,  absorb,  or metabolize  ordinary  foodstuffs  or certain  nutrients,  or who  has  other special  medically  determined  nutrient requirements,  the  dietary  management  of  which  cannot be  achieved  by  the  modification  of the  normal diet alone.

    Website / Product Information PDF

    *** Note, the methylfolate combo is almost identical to prescription DEPLIN® 7.5. Deplin is a treatment for folate deficiency only and does not provide other vitamins. 

    Metafolin®, methylcobalamin, and NAC are all available over-the-counter. The Cerefolin website also says, "If your insurance company does not cover the cost of your prescription, Brand Direct Health® pharmacy guarantees you will pay no more than $58/month" ($174 for a 90 day supply). 

    Link to comment
    Share on other sites


    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Restore formatting

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • About Me

    Yvonne (Vonnie) Mostat, RN

    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.


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-m):




  • Related Articles

    Jefferson Adams
    Celiac.com 12/28/2015 - Immune-mediated cerebellar ataxias include gluten ataxia, paraneoplastic cerebellar degeneration, GAD antibody associated cerebellar ataxia, and Hashimoto's encephalopathy.
    Despite the identification of an increasing number of immune-mediated cerebellar ataxias, there is no proposed standardized therapy.
    Recently, a research team set out to develop guidelines for treatment of immune-mediated cerebellar ataxias.
    The research team included H. Mitoma, M. Hadjivassiliou, and J. Honnorat. They are variously associated with the Department of Medical Education at Tokyo Medical University in Tokyo, Japan; the Academic Department of Neurosciences at Royal Hallamshire Hospital, Sheffield, UK; the University Lyon 1; INSERM, UMR-S1028, CNRS, UMR-5292, Lyon Neuroscience Research Center, Neuro-Oncology and Neuro-Inflammation Team, 7; and the National Reference Centre for Paraneoplastic Neurological Diseases, Hospices Civils de Lyon, Hôpital neurologique in Bron, France.
    For their study, the team evaluated the efficacies of immunotherapies in reported cases using a common scale of daily activity.
    Their resulting analysis focuses on the importance of removing autoimmune triggers (e.g., gluten or cancer), evaluating immunotherapy (e.g., corticosteroids, intravenous immunoglobulin, immunosuppressants), and adjusting according to each sub-type.
    Source:
    Cerebellum Ataxias. 2015 Nov 10;2:14. doi: 10.1186/s40673-015-0034-y. eCollection 2015.


    Jefferson Adams
    Celiac.com 01/16/2017 - Cerebellar ataxias can be caused by a wide range of disease processes, either genetic or acquired. Establishing a clear diagnosis requires a methodical approach with expert clinical evaluation and investigation.
    A team of researchers recently published a description of the causes of ataxia in 1500 patients with cerebellar ataxia.  The research team included M Hadjivassiliou, J Martindale, P Shanmugarajah, R A Grünewald, P G Sarrigiannis, N Beauchamp, K Garrard, R Warburton, D S Sanders, D Friend, S Duty, J Taylor, and N Hoggard.
    They are variously affiliated with the Academic Department of Neurosciences, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Trust, Sheffield, UK; Sheffield Diagnostic Genetics Service, Sheffield Children's NHS Foundation Trust, Sheffield, UK; the Department of Gastroenterology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Trust, Sheffield, UK; and the Department of Neuroradiology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Trust, Sheffield, UK.
    All patients in the study were referred to the Sheffield Ataxia Centre, UK, and underwent extensive examination, including, where appropriate genetic testing using next-generation sequencing (NGS).
    The team followed-up patients on a 6-month basis for reassessment and further investigations, as needed.
    The team assessed a total of 1500 patients over 20 years. Twenty per cent of those patients had a family history of ataxia, with the remaining having sporadic ataxia.
    The most common cause of sporadic ataxia was gluten ataxia at 25%. They found a genetic cause in 156, or 13% of sporadic cases, with alcohol excess causing 12% and a cerebellar variant of multiple system atrophy causing 11% of sporadic cases.
    Using NGS, they obtained positive results in 32% of 146 patients tested. The most common ataxia they found was EA2. A total of 57% of all familial ataxias were supported by genetic diagnosis. The most common genetic ataxias were Friedreich's ataxia (22%), SCA6 (14%), EA2 (13%), SPG7 (10%) and mitochondrial disease (10%).
    The diagnostic yield following attendance at the Sheffield Ataxia Centre was 63%. Immune-mediated ataxias are common. Advances in genetic testing have significantly improved the diagnostic yield of patients suspected of having a genetic ataxia.
    Making a diagnosis of the cause of ataxia is essential due to potential therapeutic interventions for immune and some genetic ataxias.
    Gluten is a culprit is 25% of sporadic ataxia cases, and clinicians should keep this in mind when diagnosing patients, as many of these cases can be reversed with a gluten-free diet.
    Source:
    J Neurol Neurosurg Psychiatry. doi:10.1136/jnnp-2016-314863


    Jefferson Adams
    Celiac.com 08/10/2017 - Gluten ataxia is defined as sporadic ataxia with positive antigliadin antibodies without an alternative cause. Gluten ataxia patients often receive MRS at baseline and again after a period on a gluten-free diet.
    A research team recently set out to evaluate the effect of gluten free diet on magnetic resonance spectroscopy (MRS) of the cerebellum in patients with gluten ataxia.
    The research team included M Hadjivassiliou, RA Grünewald, DS Sanders, P Shanmugarajah, N Hoggard. They are with the Academic Departments of Neurosciences (M.H., R.A.G., P.S.), Gastroenterology (D.S.S.), and Neuroradiology (N.H.), Sheffield Teaching Hospitals NHS Trust, UK.
    The team included 117 consecutive patients with gluten ataxia in their report. Sixty-three followed a strict a gluten-free diet with elimination of antigliadin antibodies, 35 ate a gluten-free diet, but still tested positive for antigliadin antibodies, while 19 patients were not following a gluten-free diet.
    The N-acetylaspartate (NAA)/creatine (Cr) area ratio from the cerebellar vermis increased in 62 out of 63 (98%) patients on strict a gluten-free diet, in 9 of 35 (26%) patients on a gluten-free diet, but positive antibodies, and in only 1 of 19 (5%) patients not on a gluten-free diet. The NAA/Cr ratio decreased in all 14 ataxia control patients (cerebellar variant of multisystem atrophy), while the researchers saw no differences in the MRS results between patients with celiac disease and those without.
    Better NAA/Cr ratios seen on follow-up scans supports previous findings that gluten ataxia patients see clinical improvement a gluten-free diet
    Such improvements can occur regardless of existing enteropathy, so patients with positive serology and negative duodenal biopsy should still maintain a strict a gluten-free diet.
    Source:
    Neurology. 2017 Jul 19. pii: 10.1212/WNL.0000000000004237.doi: 10.1212/WNL.0000000000004237.


    Jefferson Adams
    Celiac.com 11/28/2018 - Patients with gluten ataxia without enteropathy have lower levels of antigliadin antibodies (AGA) compared to patients with celiac disease. Magnetic Resonance Spectroscopy (NAA/Cr area ratio) of the cerebellum improves in patients with gluten ataxia following a strict gluten-free diet, and is associated with an improvement in symptoms. 
    A team of researchers recently set out to present their experience of the effect of a gluten-free diet in patients with ataxia and low levels of AGA antibodies measured by a commercial assay. The research team included Marios Hadjivassiliou, Richard A Grünewald, David S Sanders, Panagiotis Zis, Iain Croall, Priya D Shanmugarajah, Ptolemaios G Sarrigiannis, Nick Trott, Graeme Wild, and Nigel Hoggard. They are variously affiliated with the Academic Departments of Neurosciences and Neuroradiology; the Departments of Gastroenterology, the Departments of Dietetics; the Departments of Immunology, Sheffield Teaching Hospitals NHS Trust, in Sheffield, UK.
    The team conducted MR spectroscopy on 21 consecutive patients with ataxia and serum AGA levels below the positive cut-off for celiac disease, but above a re-defined cut-off in the context of gluten ataxia, at baseline and after a gluten-free diet.  Of the 21 included patients with gluten ataxia, the team found that ten were on a strict gluten-free diet with elimination of AGA, 5 were on a gluten-free diet, but continued to have AGA, while 6 patients did not follow a gluten-free diet. 
    The NAA/Cr area ratio from the cerebellar vermis increased in all patients on a strict gluten-free diet, increased in only 1 out of 5  patients on a gluten-free diet with persisting circulating AGA, and decreased in all patients who did not follow a gluten-free diet. 
    From these results, the team concludes that patients with ataxia and low levels of AGA benefit from a strict gluten-free diet. The results suggest an urgent need to redefine the serological cut-off for circulating AGA in the diagnosis of gluten ataxia.
    Read more in Nutrients 2018, 10(10), 1444; doi:10.3390/nu10101444


  • Popular Now

×
×
  • Create New...