Gluten Attack: Ataxia
Unfortunately, familiarity with gluten ataxia in the medical community tends to be the exception, not the rule, says Murray.
Bosse’s experience echoes this. “I’m not sure many of my doctors understand when I tell them I have gluten ataxia,” she says. “If I had to go to the hospital, I’m not sure the medical staff would know what I’m talking about.”
Bob Hunter, 63, a patent agent from the Big Island of Hawaii, also has gluten ataxia. His wife first noticed back in 2004 that his hands were shaking when he moved them, like reaching for his coffee cup.
“If you want to grab something, you don’t think about all the things necessary to make that happen. You just close your hand around it and do it. But if that part of the brain isn’t working well, you have to be more conscious of every muscle needed to perform the task,” says Hunter.
Like Bosse, Hunter experienced brain fog and problems with his balance, stubbing his toes and ramming his shoulders on door frames as he tried to walk, clumsily, through his house. He appeared drunk. Embarrassed, he was quick to reassure those around him that wasn’t the case.
Hunter traveled from his home in Hawaii to the Mayo Clinic in Minnesota before he was finally diagnosed with both celiac disease and gluten ataxia.
Carolyn Davison, 39, a mother of two from New South Wales, Australia, traveled halfway around the world for her diagnosis. Davison had been hospitalized half a dozen times following frightening bouts of paralysis and numbness in her legs. When her doctors timed how long she could walk before collapsing or losing her balance, the best she could do was four minutes. She experienced other strange neurologic symptoms, as well. She’d write and her letters would come out backwards, she’d get lost in the supermarket and she’d forget she was talking, mid-sentence. Before long, Davison couldn’t work, giving up her job as a therapist specializing in children with developmental disabilities and autism. Unable to negotiate stairs, she moved to a one-story house.
On the long list of conditions Davison was tested for, including Guillain–Barré syndrome and multiple sclerosis, blood work was run for celiac disease. Her antibodies were raised but a biopsy failed to find anything. Although Davison’s neurologist knew that in some celiacs there can be neurologic symptoms, without a clear-cut case of celiac disease, she was out of ideas.
Meanwhile, Davison started to question her sanity. Her doctors were giving up on her but her symptoms were getting worse. Like Bosse, she began experiencing frightening episodes where she couldn’t catch her breath and couldn’t swallow, choking on her own saliva. Terrified, Davison took matters into her own hands. She got online and came across Hadjivassiliou’s research. She showed it to her neurologist, who encouraged her to travel halfway across the world to see him.
Armed with binders full of her medical records, Davison went to England and met with Hadjivassiliou. He ran just one additional test, the genetic screen for celiac disease. The test can’t diagnose celiac disease but some experts believe when positive, it can suggest a genetic predisposition toward gluten sensitivity. For Davison, the genetic test helped provide even more evidence she’s gluten sensitive and after three long and trying years, she was finally diagnosed with gluten ataxia.
Next: Help Through Diet