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.
Charabaty says she frequently sees patients, especially women, who’ve been told by doctors that their symptoms—which can include fatigue and a “foggy” brain, as well as digestive tract problems—are all in their head, not in their gut. Yet, she says, research does not support the view that NCGS is purely psychological in nature.
“The patient is having a legitimate concern and is suffering,” Charabaty says. “It’s very important to validate the patient’s symptoms.”
Researchers are looking to identify changes in the intestines of people with NCGS. If they can pinpoint them, that would help convince more doctors that the relief found in going gluten-free is not psychological, Charabaty says. “We know there are so many things we don’t fully understand yet.”
For now, determining whether someone has NCGS is a matter of ruling out every other possible explanation, including celiac disease. The Bethesda-based American College of Gastroenterology, a professional group of digestive disease specialists, recommends testing the blood of people who have celiac symptoms to see if it contains elevated levels of certain antibodies characteristic of celiac disease. If it does, the next step is a biopsy of the small intestine to confirm celiac.
For accurate test results, a patient has to consume a tiny amount of gluten. Patients who have put themselves on a gluten-free diet are sometimes reluctant to do that, fearing how it will make them feel, Charabaty says. But others are willing to risk it because they want to know if they have the disease, which runs in families, so they can be alert to it in their children. And, she adds, some people want to be certain they don’t have celiac disease so they can be less vigilant about gluten in their diet.
“The issue is that celiac disease has other long-term consequences,” says Dr. Julia Korenman, a gastroenterologist with Capital Digestive Care in Rockville. “That’s the downside of not knowing for sure. We’d rather have a diagnosis, but I don’t force anybody into anything.”
When patients test negative for celiac disease, Korenman says she next evaluates them for lactose intolerance, which grows increasingly common with age and is relatively easy to diagnose, at least in people who drink milk and eat cheese. If those patients swear off dairy products for two weeks and feel better, she says, chances are their symptoms of bloating, diarrhea and the like were due to the milk they were drinking with their cookies or cereal, not the gluten in those foods. If they’re still experiencing symptoms, Korenman says she asks how much soda they drink and how often they eat apples and pears, all of which produce gas.
If cutting back on gas-producing foods and drinks doesn’t relieve their symptoms, Korenman says she’ll suggest a gluten-free diet.
For Amable, the Rockville woman, repeated testing eventually confirmed that she does not have celiac disease. Still, she thought, “I’m a scientist. There has to be some sort of scientific explanation for this.”
She began keeping a journal of what she ate. “I started realizing that a lot of processed foods, the breads, ramen noodles—I was a grad student—were really, really exacerbating my symptoms.”
She went on a strict, gluten-free diet for a week and thought: Wow, I really don’t feel so bad. So she continued it for several more weeks. It was difficult, but she felt much better.
Amable tried eating gluten-containing products again to confirm her finding. Her symptoms returned.
She hasn’t consumed gluten in nearly two years and says it has gotten easier to avoid it, thanks to the explosion of gluten-free products on the market.
“If I do want bread, there are bread options for me. It’s nice every now and then to have a cookie or cake and make cupcakes and muffins and breads and feel kind of human again,” says Amable, who’s back to 130 pounds. “They actually taste really good.”
Lukash says every Whole Foods store posts a list online of its available gluten-free products. “It’s usually updated every two weeks,” she says. “There are new products constantly coming in.”
Foods prepared in the store’s kitchen can’t be labeled gluten-free because of the risk of cross-contamination from gluten-containing foods, Lukash says. But Whole Foods has a gluten-free kitchen in North Carolina that provides frozen baked goods to all of its stores.
Matthew Newland, chef at Wildwood Kitchen in Bethesda, says he has noticed an increase in diners requesting dietary accommodations. A decade ago, when he worked in Charleston, S.C., perhaps one person a month mentioned wanting to avoid gluten.
“Now it’s five a night,” Newland says. “Almost everything on the menu can be done gluten-free in one way or another.”
Unless you have celiac or NCGS, though, “I don’t think there’s a good reason to be off of gluten. Certainly not for losing weight,” Korenman says. “Gluten or wheat is a good part of the healthy, balanced diet.”
Rita Rubin lives in Bethesda and is a former health writer for USA Today. To comment on this story, email firstname.lastname@example.org.