In Gluten Ataxia, Antibodies Attack the Cerebellum
When you have gluten ataxia, the antibodies your body produces in response to gluten ingestion mistakenly attack your cerebellum, the part of your brain responsible for balance, motor control, and muscle tone. The condition is autoimmune in nature, which means it involves a mistaken attack by your own disease-fighting white blood cells, spurred on by gluten ingestion, as opposed to a direct attack on the brain by the gluten protein itself.
Left unchecked, this autoimmune attack usually progresses slowly, but the resulting problems in balance and motor control eventually are irreversible due to brain damage.
Up to 60% of patients with gluten ataxia have evidence of cerebellar atrophy—literally, shrinkage of that part of their brains—when examined with magnetic resonance imaging (MRI) technology. In some people, an MRI also will reveal bright white spots on the brain that indicate damage.
How Many People Suffer From Gluten Ataxia?
Because gluten ataxia is such a newly-defined condition and not all physicians accept it as of yet, it's not clear how many people might suffer from it.
Dr. Marios Hadjivassiliou, a consultant neurologist at Sheffield Teaching Hospitals in the United Kingdom and the neurologist who first described gluten ataxia, says as many as 41% of all people with ataxia with no known cause might, in fact, have gluten ataxia. Other estimates have placed those figures lower — somewhere in the range of 11.5% to 36%.
Since ataxia itself is a rare condition—affecting only 8.4 people out of every 100,000 in the U.S.—that means fewer still actually have gluten ataxia. Estimates are much higher for the number of people with celiac disease and gluten sensitivity who have neurological symptoms.
Gluten Ataxia: Gluten-Induced Neurological Problems
Gluten ataxia symptoms are indistinguishable from symptoms of other forms of ataxia. If you have gluten ataxia, your symptoms may start out as mild balance problems—you might be unsteady on your feet, or have trouble moving your legs.
As symptoms progress, some people say they walk or even talk as if they're drunk. As the autoimmune damage to your cerebellum progresses, your eyes likely will become involved, potentially moving back and forth rapidly and involuntarily.
In addition, your fine motor skills may suffer, making it more difficult for you to work writing instruments, zip zippers, or to manipulate buttons on your clothing.
Diagnosis Not Straightforward for Gluten Ataxia
Since not all physicians accept gluten ataxia as a valid diagnosis, not all doctors will test you for the condition if you show symptoms. In addition, experts in the field of gluten-induced disease only recently have developed a consensus on how to test for gluten ataxia.
If ataxia symptoms stabilize or improve the diet, then it's considered a strong indication that the ataxia was gluten-induced, according to the consensus statement.
Gluten Ataxia Treatment Involves Strict Gluten-Free Diet
There's a reason for this: the neurological symptoms spurred by gluten ingestion seem to take longer to improve than the gastrointestinal symptoms, and seem to be more sensitive to
lower amounts of trace gluten in your diet, Dr. Hadjivassiliou says. Therefore, it's possible that you might be doing more damage to yourself if you continue to ingest small amounts of gluten.
Of course, not all physicians agree with this assessment, or even necessarily with the advice to eat gluten-free if you have otherwise unexplained ataxia and high levels of gluten antibodies. However, it does seem to be backed up by anecdotal reports from people with diagnosed gluten ataxia and from people with severe neurological problems associated with celiac disease: Those people say the neurological symptoms take much longer to resolve; while some stabilize but never improve.
The number of potential gluten ataxia sufferers is very small when compared with the numbers of people with celiac disease, and it's also small when compared with estimates for
how many people have gluten sensitivity.
It's possible that, as more studies are conducted on gluten ataxia, researchers will find even stronger links between that condition, celiac disease, and gluten sensitivity. In the meantime, if you have symptoms similar to those of gluten ataxia, talk to your doctor. You may require testing to determine if you have another condition that can cause similar symptoms.
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Sources:
Fasano A. et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine. BMC Medicine 2012, 10:13 doi:10.1186/1741-7015-10-13. Published: 7 February 2012
Hadjivassiliou M. et al. Dietary Treatment of Gluten Ataxia. Journal of Neurology, Neurosurgery and Psychiatry. 2003;74:1221-1224.
Hadjivassiliou M. et al. Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics. Brain. 2003 Mar;126(Pt 3):685-91.
Hadjivassiliou M. et al. Gluten Ataxia. The Cerebellum. 2008;7(3):494-8.
Rashtak S. et al. Serology of celiac disease in gluten-sensitive ataxia or neuropathy: role of deamidated gliadin antibody. Journal of Neuroimmunology. 2011 Jan;230(1-2):130-4. Epub 2010 Nov 6.