The author felt like her old self within two weeks of going off gluten. Photograph by Mark Bennington.
It was a nurse in my internist’s office who raised the question: “This sounds like it could be gluten-related,” she said after listening to my list of ailments from rashes to stomach discomfort. “Have you considered that?”
That was two years ago. I’d barely heard of gluten intolerance, let alone the array of symptoms it was capable of triggering. All I knew was that, since returning from a vacation in Maine, I’d felt crummy. Nothing—rest, vitamins, doctors’ visits, medications—seemed to help. The old symptoms kept returning or new ones would emerge.
In the ensuing months I would undergo a battery of tests and begin my own investigation into why I felt so bad. By the end, I’d know more about gluten than many doctors. At age 48—after a lifetime of eating foods containing gluten without incident—I would be diagnosed with non-celiac gluten intolerance, also known as gluten sensitivity.
What Is Gluten?
A protein found in wheat, barley, and rye, gluten has been around a long time, though experts believe some grains may now contain more of it because of changes in the way grains are grown. Besides the obvious—breads, pretzels, beer, and pasta—many processed foods contain gluten, usually as a binder or stabilizer. Examples are salad dressings, candy, soups, baked goods, sauces, gravies, and ice cream. Or as my physician put it, “Gluten is in anything that tastes good.”
Until recently, if you’d heard of gluten, it was probably because someone you knew had celiac disease. In people with that condition, gluten triggers antibodies that attack the body’s tissues and damage intestinal villi, finger-like projections in the digestive tract that absorb nutrients. People with celiac disease commonly experience intermittent diarrhea, bloating, and abdominal pain. But there may be less obvious symptoms: depression and anxiety, muscle cramps, rashes, fatigue, anemia, joint pain, and tingling in the legs and feet.
The symptoms can be similar to those of other conditions such as Crohn’s disease, irritable bowel syndrome, and gastric ulcers, which is why, according to one study, celiac disease takes an average of four years to diagnose. The only way to treat it is to adopt a gluten-free diet. Failure to do so can lead to serious health problems, such as malnutrition, osteoporosis, infertility, certain cancers, and neurological problems.
Gluten sensitivity often mirrors celiac disease in its symptoms and sometimes in the time they take to emerge, though with gluten sensitivity the symptoms normally occur faster—often within days, compared with weeks or months for celiac disease. Gluten sensitivity is also treated by cutting out gluten.
The main difference is that gluten sensitivity isn’t an autoimmune disorder and isn’t thought to be life-threatening, says Dr. Alessio Fasano, director of the University of Maryland Center for Celiac Research and lead author of a recent study on gluten sensitivity.
“You are not going to die of gluten sensitivity,” Fasano says, “but your lifestyle can be greatly affected if it goes undiagnosed. Dealing with it can be so stressful and the symptoms so debilitating that it can cause someone to lose their job, lose their partner, things like that.”
For two months before my diagnosis, I experienced brain fog and anxiety that made focusing on work difficult. I was tired and fell into the habit of taking naps. An avid exerciser, I had whittled my workouts—on the rare occasion I felt up to one—from an hour down to ten minutes, due to muscle aches and weakness. My skin itched all the time, to the point of interfering with sleep. And my sinuses were so congested that I rarely went out.
Fasano’s study, published last year in the journal BMC Medicine, provides the first evidence of key differences between gluten sensitivity and celiac disease. Fasano says the two conditions are part of a spectrum of gluten-related disorders.
An estimated 18 million Americans, or 6 percent of the population, suffer from gluten sensitivity, according to the Center for Celiac Research, and Fasano expects the number to climb. Meanwhile, there’s been a fourfold increase in celiac disease over the past 50 years, with just under 1 percent of the population—about 2.5 million people—affected today.
“We don’t know why the numbers are up,” says Peter H.R. Green, director of the Celiac Disease Center at Columbia University. “Gluten just may be more powerful now or there may be other environmental factors.”
Next: "Two weeks later, I was myself. Again."