Is gluten attacking your brain?
by Alicia Woodward
As editor of Living Without magazine, I never miss an opportunity to talk about gluten ataxia. Gluten ataxia is a little known neurologic condition that develops in response to eating gluten. It’s characterized by the loss of balance and coordination. However, it can also affect fingers, hands, arms, legs, speech and even eye movements. Typical symptoms include difficulty walking or walking with a wide gait, frequent falls, difficulty judging distances or position, visual disturbances, brain fog and tremor.
With gluten ataxia, damage takes place in the cerebellum, the balance center of the brain that controls coordination and complex movements like walking, speaking and swallowing. Purkinje cells in the cerebellum, key in maintaining balance, are thought to be lost in gluten ataxia.
Marios Hadjivassiliou, MD, a neurologist at Royal Hallamshire Hospital in Sheffield, England, first described gluten ataxia in the 1990s. After seeing a number of patients with unexplained balance and coordination problems, he began systematically testing them for gluten sensitivity using antigliadin antibodies, which point to a heightened immune response to gluten but not necessarily to a diagnosis of celiac disease. Hadjivassiliou found a very high prevalence of antibodies in patients with ataxia, coining the condition gluten ataxia. Many patients with gluten ataxia have no bowel symptoms (which are common in those with celiac disease).
Celiac disease, dermatitis herpetiformis (an itchy rash) and gluten ataxia are all manifestations of gluten sensitivity but they are different diseases. Hadjivassiliou argues that gluten sensitivity is not principally a disease of the small bowel; it can be primarily—and sometimes exclusively—a neurological disease.
Gluten ataxia is currently diagnosed when antigliadin tests suggest gluten sensitivity and other causes of ataxia are ruled out. (Small bowel biopsy is advisable in patients with positive antigliadin and celiac blood tests.) It is a diagnosis of exclusion.
A new screening tool may soon help. Hadjivassiliou and his team recently identified an antibody, transglutaminase TG6, which may be a better marker for gluten ataxia. TG6 is primarily expressed in the brain. Although promising, a test for TG6 is not yet ready for clinical use. For now, it’s most important for patients to repeat blood testing, usually after six months of treatment with the gluten-free diet, to ensure elimination of all antibodies.
The gluten-free diet—the mainstay of treatment for gluten ataxia—can result in a stabilization of symptoms. The neurologic system tends to heal slowly. Once ataxia is well established, it’s rare to make a full recovery. However, the outlook isn’t grim. In addition to dietary intervention (strict avoidance of gluten), physical and occupational therapy can make a big difference.
The medical community is still largely unaware of gluten ataxia. If you suspect you might have it, go to LivingWithout.com and print out articles on gluten ataxia. Take these to your primary care physician or neurologist and insist on being screened.
Alicia Woodward, LCSW, is editor of Living Without, the nation’s leading magazine for those with sensitivities and food allergies.