Against the Grain
Non-celiac gluten sensitivity is hard to diagnose and some doctors are skeptical it's even real. But plenty of people say they have it all right-and they're helping to fuel an entire food industry.
Lauren Amable’s symptoms began seven years ago, right after she returned home from a trip to Portugal and Spain.
“Every time I ate, I felt so ill,” says Amable, a 34-year-old cancer researcher who lives in Rockville. “One of my main symptoms was abdominal pain. I had extreme nausea. I would have diarrhea. It was really hard sometimes even to walk.”
At first, doctors blamed her digestive woes on drinking tap water in Europe. But her symptoms persisted for months, suggesting that something else was going on.
Amable, who stands 5-feet-8, saw her weight drop from 135 pounds to 108.
She underwent a variety of scopes and scans as doctors tried to pinpoint her problem, but everything appeared normal.
“It seemed to just be centered on what I ate,” she says. “I would get really, really sick. I would stop eating. I would feel better a little bit.”
When she stuck with chicken and salad, she’d continue to feel better. But when she started eating pizza, spaghetti and bread again, her digestive tract would resume turning flip-flops.
Finally, Amable diagnosed the problem herself: non-celiac gluten sensitivity, or NCGS.
Little-studied and still regarded with skepticism by some doctors, NCGS is a condition whose symptoms resemble those of celiac disease, an autoimmune disorder in which eating gluten—the proteins in wheat, rye and barley and crossbreeds of those grains—triggers antibodies that attack the lining of the small intestine. This damage can prevent the absorption of nutrients and lead to life-threatening complications, such as low bone density or even intestinal cancer. Though there is no cure for celiac disease, a gluten-free diet can minimize the risk of serious complications.
About one in 100 people worldwide has celiac disease, and the percentage with NCGS could be several times higher than that. But many others are stocking up on gluten-free products or requesting gluten-free restaurant dishes under the misguided impression that they’re healthier choices or even diet foods.
“A lot of that has to do with what I call the Hollywood factor,” says Sally Lukash, a natural foods chef who serves as the healthy eating specialist at the Whole Foods store in Friendship Heights. “These celebrities get on a gluten-free kick, they lose weight, they go on these shows” and attribute their figures to eliminating gluten from their diets.
In reality, gluten-free products such as baked goods “are not the best quality, and they’re not the most nutrient-dense,” Lukash says, noting that sugar is usually one of their top five ingredients.
Yet U.S. sales of gluten-free foods and beverages jumped 44 percent from 2011 to 2013, when they totaled an estimated $10.5 billion, according to Mintel, an international market research firm based in London. More than a quarter of the people in the U.S. who eat gluten-free foods say they do so to lose weight, Mintel found.
“The celiac community did a really great job in raising awareness for patients,” says Dr. Aline Charabaty, a Potomac resident and director of the Center for Inflammatory Bowel Disease at Georgetown University Hospital. “That translated into the whole gluten-free diet craze.”
“Gluten-free” is such a popular claim on food products that the Food and Drug Administration decided to step in. Last August, the FDA published a new regulation defining the characteristics of a food labeled “gluten-free,” “without gluten,” “free of gluten” or “no gluten.” All are held to the same standard: a gluten limit of less than 20 parts per million, which, according to the FDA, is the lowest level that can be consistently detected in foods. Manufacturers have until this August to bring their labels into compliance with the new regulation.
It’s not clear how much gluten is needed to trigger symptoms in people with NCGS or even whether gluten is to blame. Dr. Douglas Seidner, director of the Center for Human Nutrition at Vanderbilt University, spoke on the topic at the American Society for Nutrition meeting in Washington, D.C., this past December. He told attendees that gluten is clearly the culprit in celiac disease, but that it’s possible another component in wheat causes symptoms in some people with NCGS.
“We’re looking at maybe a spectrum of diseases or maybe the same disease where people respond differently to things [in the diet],” Charabaty says. She notes that up to 30 percent of patients diagnosed with irritable bowel syndrome—a common condition that causes bloating, abdominal pain and constipation or diarrhea, but not permanent intestinal damage—are sensitive to gluten or wheat.
Diagnosing celiac disease is pretty straightforward, but diagnosing NCGS is not, leading to some confusion and debate about who should eliminate gluten from their diet. “We don’t have a diagnostic test,” Charabaty says. For that reason, “there are a lot of doctors who don’t think this is real. This disease has been driven by patients.”