Gluten Attack: Ataxia
Gluten ataxia is a neurological condition characterized by the loss of balance and coordination.
[Updated May 28, 2015]
Not long after her diagnosis, Sarah Bosse realized her case of celiac disease was not typical. Bosse had joined a support group for newly diagnosed celiacs and was surprised by what she saw at the first few meetings.
“They were working full-time jobs, had families and went out at night. Not to discount the severity of their symptoms and experiences but they had a much more normal life.”
Bosse had expected them to be as sick as she was.
The 26 year old from Raleigh, North Carolina, can trace her celiac symptoms all the way back to elementary school when she spent countless hours holed up in the nurse’s office, nibbling on saltines for her diarrhea, nausea and stomach cramps.
“Looking back, it’s so ironic. Those saltines were making me worse,” recalls Bosse. Her symptoms continued into her teen years and were chalked up to anxiety and irritable bowel syndrome. The bloating, diarrhea and cramping were such a constant part of her youth that when she looks at childhood pictures, she can see the discomfort and embarrassment on her face.
“I didn’t realize it at the time but my life has been about managing my stomach problems,” she says.
Shortly after finishing college, Bosse began experiencing frightening new symptoms. She was increasingly dizzy and disoriented, frequently stumbling while rounding a corner or changing directions. She’d even fall out of a chair or her own bed at times, blaming it on klutziness until balance was no longer her only new complaint. Her head started to feel thick and foggy and she had trouble concentrating, likening it to an extreme case of ADHD. She also began having unusual problems with her vision, seeing bright flashes and noticing that her eyes seemed to bounce, rather than rest on what she was looking at.
“I could be at the grocery store, staring at a display of ketchup. I’d try to reach for one but my eyes wouldn’t stay still so that I could pick it up,” she says.
Before Bosse was able to see a specialist, a far scarier symptom struck. She was asleep in the early hours of the morning when she woke with a start, gasping for breath. She felt paralyzed, as if her body had forgotten how to breathe. Also unable to swallow, she was choking on her own saliva. Petrified, she managed to call for help and was rushed to the emergency room.
Concerned she might have multiple sclerosis, Bosse underwent a series of brain MRIs at the hospital. When they came back clear, she was tested for Lyme disease, lupus, rheumatoid arthritis and countless other conditions over the next several weeks. Results were normal and doctors didn’t have an answer for her.
Then a close friend was diagnosed with celiac disease and Bosse wondered if it could help explain her digestion symptoms. She asked to be tested and just days later, the diagnosis was nailed. Within weeks of eating gluten free, her stomach troubles were turning around but her balance problems were worse than ever.
“I couldn’t walk anything close to a straight line. By that time, I was spending most of my day in a wheelchair. I had to stop working outside my home. It was hard to appreciate the fact that my stomach wasn’t hurting as much because I was housebound,” she says.
Losing hope, Bosse was hospitalized for depression. While there, on a hunch one of her doctors suggested she could have a little-known condition called gluten ataxia.
Next: A Controversial Call