Gluten Attack: Ataxia
If Bosse had any doubts about having gluten ataxia, they were put to rest the first time she accidentally ate gluten. Her roommate had purchased a loaf of spelt bread, and mistaking it for gluten-free bread, Bosse ate it. Within an hour, she was doubled over with diarrhea that lasted for two weeks. Then the joint pain set in. Dizziness, confusion and vision problems kept her bed-ridden for several more weeks.
With this level of sensitivity, a dietary slip is a major setback. The last time it happened for Bosse was at her brother’s wedding. She ate a bite of roast beef and was sick 30 minutes later. She thinks the knife used to slice the meat may have doubled to cut rolls. Three months later, she was still suffering from an exacerbation of her ataxia symptoms. Eventually the symptoms plateaued, leveling out to a point she describes as “just a little lower” than where she was before.
“Every time I’m exposed to gluten, I lose a little bit of something I used to be able to do, probably permanently,” she says.
It’s hard, if not impossible, to fully recover from an incident of getting inadvertent gluten, agrees Davison. “I can’t take any risks with food. The consequences for me are far more serious than for lots of others on gluten-free diets.”
For her own well-being, Bosse doesn’t dine at restaurants. She takes a packed cooler when she goes out with friends. She doesn’t eat food that others prepare. Instead, she invites friends over to her kitchen where they cook using her utensils and ingredients.
“Although all celiacs need to be vigilant with their diet, I really counsel patients who also have gluten ataxia that they can’t take any chances at all,” says Murray. “They’ve got to protect their balance as much as possible.”
Next: Battle for Health