Gluten Attack: Ataxia
Help Through Diet
Delayed diagnosis of gluten ataxia is the norm, says Hadjivassiliou, particularly for those patients like Davison, who don’t have celiac disease or gastrointestinal symptoms. Clinicians may look for gluten sensitivity only if gastrointestinal symptoms are present and they’re unlikely to think of gluten sensitivity in the context of ataxia, says Hadjivassiliou. But his research, published in Brain in 2003, found up to 40 percent of patients with unexplained ataxia have gluten sensitivity. Hadjivassiliou recommends neurologists routinely screen patients with unexplained ataxia for gluten sensitivity.
Those with gluten ataxia have no time to waste, he warns. The gluten-free diet—the mainstay of treatment for gluten ataxia—can result in a stabilization of symptoms. But often, significant damage is already done.
The neurologic system tends to heal very poorly and very slowly, says Murray. Unlike the small bowel lining, Purkinje cells of the cerebellum have no capacity for regenerating, explains Hadjivassiliou. Once ataxia is well established, which can happen in as few as six months, it’s rare to make a full recovery.
Extensive damage helped explain why, even after going gluten free, Bosse continued to have debilitating symptoms. Her ataxia was advanced. It’s not unusual to be wheelchair-bound at diagnosis, Murray says.
However, the outlook isn’t grim. In addition to dietary intervention, physical and occupational therapy can make a big difference.
As a former occupational therapist assistant, Bosse practices many of the skills she used to teach. She spends hours each day ‘retraining’ her brain and muscles to perform everyday tasks. Physical therapy and regular exercise at the gym help strengthen her weakened muscles.
Like Bosse, Hunter began a rigorous physical therapy program shortly after his diagnosis. He also cut out alcohol, which can exacerbate ataxia symptoms. Having read about vitamin D’s many health attributes, including possible benefit in multiple sclerosis and other autoimmune and neurologic conditions, Davison began supplementing her diet with vitamin D. Although Davison feels it improves her symptoms, particularly in winter, experts don’t yet endorse vitamin D supplementation for gluten ataxia. Celiac disease can cause nutritional malabsorption (of copper and vitamins B6, B12 and E, for example) that may affect balance but gluten ataxia on its own is not thought to cause vitamin deficiencies.
The overwhelming evidence is that gluten ataxia is immune-mediated, say experts. Hadjivassiliou and his team are currently studying how the condition damages neural cells, with the hope of one day developing better targeted therapies. 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. Symptoms can stabilize and improve once antibodies are gone.
Next: Slow But Steady