Kim and Kurt Maes with sons Carson (left) and Conner (right).
LEFFLER, the Beth Israel Deaconess Medical Center gastroenterologist, has analyzed data from nearly 1,400 responses to a survey conducted in conjunction with the National Foundation for Celiac Awareness about brain fog. As respondents to the survey were among the NFCA’s online community and presumed to follow a gluten-free diet, his team has been able to estimate that it takes anywhere from 30 minutes to eight hours for brain fog symptoms to appear after gluten exposure. On average, they last between four and eight hours, although they can persist for up to two days.
“It’s not one thing, but probably a syndrome – one where people feel that they are cognitively limited,” Leffler explains. “It could be problems taking directions, compiling lists or multi-tasking, all of which fall under the brain’s executive, or a more high-performing function. Some describe how they can’t even go shopping!”
“The best analogy,” he continues, “is hepatitis C patients and the side effects they experience when treated with Interferon shots … they can feel thickheaded, fatigued and slow, as if suffering from a major cold or flu.”
Leffler believes it’s time brain fog and other cognitive symptoms got more attention in the medical community. “This is an issue that is very real and very common and the big problem is misdiagnosis because it just doesn’t get enough attention.”
Another problem is that although the U.S. Food and Drug Administration has enacted a new standard for gluten-free labeling of foods, it doesn’t apply to other products like drugs and cosmetics. In addition, food regulated by the U.S. Department of Agriculture, like meat and poultry, is beyond the scope of the standard. This means people who follow a gluten-free diet often still have a hard time gauging what is safe and what isn’t. “At the very least, gluten content should be easily found on a product’s website,” the gastroenterologist says.
SHIRLEY Braden agrees that being able to tell that your diet truly is gluten-free is of critical importance. The 56-year-old cut gluten from her diet nine years ago after what seemed like a lifetime of health issues, including headaches and hormonal swings, a hysterectomy at age 46 and having her gallbladder removed. Friends and colleagues treated her with kid gloves, for she tended to be moody at best and a downright crank when under the weather.
“People would ask things like, ‘Is it that time of the month?’ It was infuriating,” she says. “The reality is, I’m not that person at all. Off gluten, I’m very positive.”
These days Braden, who authors the blog glutenfreeeasily.com, still gets accidentally glutened. But the difference is that she now recognizes the symptoms. Like getting sleepy at ridiculously early hours or having restless legs that can’t be relieved no matter how much she tries to stretch and relax them. Or not being able to walk in a straight line, banging into furniture as she tries to make her way across a room.
“I’ll think ‘Uh-oh. We ate out today. You try to put up your guard but sometimes, it isn’t enough.”
Back in Phoenix, Conner and Kurt Maes have learned over the years through trial and unwitting error to be vigilant about what they eat. To better understand the condition and the diet, Kim Maes went back to university to get a Master’s degree in nutrition. She has since become a food allergy coach and created a website (cookitallergyfree.com) and a healthy cooking app for smartphones.
“It has been a real lifestyle change for all of us,” she says. “At home, it’s easy to know the content of everything we put in our mouths. Outside our kitchen, it’s not always as easy.”
For example, Maes recently spent a day fretting because Conner had a cultural event at school, complete with food stations that represented different nationalities. Would he inform himself of what was in each dish before trying it? When he came home, she kept watch over him, anxious.
But he reassured her. “Mom, I must’ve known what not to eat today,” he said. “I feel good. I feel like me!”
Next: Science Sounds the Alarm on Gluten’s Brain Effects