Because gluten ataxia is a relatively new discovery, and not all healthcare providers agree that it exists, there hasn’t been a universally accepted way to test for or diagnose it yet.
But that may be changing. A group of top researchers in the field of celiac disease and non-celiac gluten sensitivity has issued a consensus statement on how practitioners can diagnose all gluten-related conditions, including gluten ataxia.
Why Does Gluten Cause Ataxia?
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.
How Rare Is Gluten Ataxia?
Because gluten ataxia is such a newly-defined condition and not all healthcare providers 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%.
Gluten Ataxia Symptoms
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. For example, 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 the cerebellum worsens, the eyes likely will become involved, potentially moving back and forth rapidly and involuntarily.
In addition, fine motor skills may suffer, making it more difficult for you to work writing instruments, zip zippers, or manipulate buttons on your clothing.
Complications
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 the brain—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.
Gluten Ataxia Diagnosis
Gluten ataxia diagnosis involves the use of specific celiac disease blood tests, but not the tests that are considered the most accurate to test for celiac disease. If any of those tests show a positive result, then the healthcare provider should prescribe a strict gluten-free diet.
If ataxia symptoms stabilize or improve with the gluten ataxia diet, that’s considered a strong indication that the ataxia was gluten-induced, according to the consensus statement.
Given the newness of this condition and the controversy over its acceptance as a valid diagnosis, however, it’s possible that some healthcare practitioners may not consider it.
Gluten Ataxia Treatment
If you’re diagnosed with gluten ataxia, you need to follow a very strict gluten-free diet.
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.
Of course, not all healthcare providers 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 at least one small study and anecdotal reports from people with diagnosed gluten ataxia and from people with severe neurological problems and celiac disease. Those people say the neurological symptoms take much longer to resolve; while some stabilize but never improve.
A Word From Verywell
The number of people who may have gluten ataxia is very small compared to the number of people with celiac disease or gluten sensitivity.
However, many people with celiac disease and gluten sensitivity also have neurological symptoms, which often include gluten-related peripheral neuropathy and migraine. Some also complain of balance problems that do seem to resolve once they go gluten-free.
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 healthcare provider. You may require testing to determine if you have another condition that can cause similar symptoms.
