The protein gluten can greatly impact brain function among those with celiac disease. The range of symptoms is huge: from fogginess and inattention to actual damage seen on scans.
KIM Maes doesn’t take it personally, at least not anymore. She knows that when her husband and son seem to be ignoring her requests to take out the garbage or put a load of laundry through, chances are they aren’t being consciously stubborn or forgetful. Their brains just can’t help it.
“What did you have for lunch today?” the nutritionist is inclined to ask them, hands on her hips. “Did you get glutened?”
Both Kurt Maes, a 38-year-old commercial property developer in Arizona, and Conner, who is 9, have celiac disease. Whenever their immune systems detect the presence of gluten, a common protein found in wheat, barley and rye products, they go into attack mode, inflaming and damaging the lining of their small intestines. Both the Maes fellows suffer from symptoms that are not usually considered with the condition, such as absentmindedness and the inability to complete even the most simple of tasks.
Conner was diagnosed first. Although he had suffered digestive problems since infancy, celiac disease was not spotted as the culprit. But when he began to suffer seizures at night, his parents turned to a neurologist. She looked at his brain scans, saw the damage to his cerebellum and quickly realized she had seen these kinds of abnormalities before in patients with the autoimmune condition. Testing then confirmed her suspicions.
Kurt tested positive for celiac disease the following year. Suddenly, a lot of things made sense. Like the diagnosis of attention deficit disorder he’d been given back in college. Like the so-called dairy allergy that made him double over in pain after eating foods such as pizza. Sometimes his mind seemed to wander, right in the middle of an important conversation. He wasn’t a bad listener or allergic to dairy – never mind the ADHD. The abdominal pain and the behavior tics were digestive and neurologic indicators of a condition with a myriad of symptoms and only one known treatment: go gluten-free.
“There were times when it was so frustrating. I’d say, ‘Are you even listening to me?’” she recalls with a laugh about the man she has been with for 19 years. “After going off gluten, Kurt was a changed man – for the most part.”
REMEMBER the old “this is your brain” anti-drug campaign with the egg sizzling in a fry pan? Think of this as the celiac/gluten-sensitive equivalent: “This is your brain – and this is your brain on gluten.”
Dr. Marios Hadjivassiliou, the consultant neurologist at Royal Hallamshire Hospital in Sheffield, England and a pioneer in how gluten affects the brain, suggests that we think of the grey matter in our brain as the computer and the white matter as the cables that hook it all up and keep it going. His latest research shows that the brain scan of someone with gluten-related damage from celiac disease or gluten sensitivity may show various degrees of damage.
Sometimes he sees lesions in the white matter. In the advanced case of someone with celiac disease that has gone undiagnosed for years, the brain may even undergo a significant decline in grey matter density.
Research into how gluten affects the brains of those with celiac disease and gluten sensitivity is still in its infancy, including why symptoms are triggered in the brains of some but not others. The question may seem as puzzling as celiac disease itself, which has symptoms that mimic so many other conditions. But specialists such as Hadjivassiliou and Dr. Daniel Leffler, a gastroenterologist at Beth Israel Deaconess Medical Center in Boston, are beginning to close in on the answers.
With grey matter damage, you may have balance issues, problems speaking or sensory symptoms. With white matter damage, you may suffer headaches as intense as migraines, have tingling sensations in your arms and legs, experience extreme fatigue or suffer from insomnia.
Then, there are the cases of accidental “glutening,” such as the episodes that Kurt and Conner Maes occasionally experience. Known informally as “brain fog” or “foggy brain,” they feature a temporary, often severe inability to think clearly and perform tasks. Even though a person who’s trying to follow a gluten-free diet may feel thickheaded and groggy, there should be no lasting damage once the protein is cleansed from the system.
While mild cases won’t show up on brain scans, Hadjivassiliou’s research suggests that repeated incidents of trying to “cheat” the diet could lead to more serious, long-term brain effects.
Next: More Symptoms, How to Get Your Brain Back