Those numbers don't account for the millions of other people who go on gluten-free diets for medical reasons not directly related to celiac or gluten sensitivity, says Shepard. "You have parents of children with autism spectrum disorder who find relief for their children on gluten-free/casein-free diets," she says. "You also have people with rheumatoid arthritis, lupus, and other inflammatory diseases who are told to go on an anti-inflammatory diet to help manage their symptoms." Eliminating gluten is one way to help manage inflammatory symptoms.
It isn't clear why so many people react negatively to gluten nowadays, but Shepard and other celiac researchers point to our heavily industrialized food system and reliance on processed foods that commonly contain gluten. "We can't ignore that there's an environmental component," she says. "We've bred these strains of wheat to be pest resistant and to be more prolific, so it's easy to think that we have increased the gluten content. We need to evaluate what we're doing to our food."
Still, she's encouraged by what took place at the summit. Before the meeting, the FDA's primary excuse, Shepard says, was that instituting gluten-free regulations would be complicated, owing to all the processes that would need to be in place to prevent cross-contamination. "But they seemed to be unaware of the implications of their inaction," she says, adding that FDA representatives were very receptive to her and other consumers in attendance who testified to being afraid to eat out or even, in some cases, to go shopping because their foods couldn't be guaranteed gluten free. "We're moving forward."
Until the FDA defines what it means for a food to be truly "gluten free," here are a few things you should know:
• Buy certified. There are currently two organizations that certify food to be free of wheat, barley, and rye gluten at levels less than 10 parts per million. One is the Gluten-Free Certification Organization and the other is the Celiac Sprue Association (celiac sprue is another name for celiac disease). Because gluten can lurk behind vague labels like "artificial flavoring," it's helpful to buy certified products if you're really trying to avoid gluten in your diet.
• Watch out for hidden sources. Gluten is also used in nonfood products, such as pharmaceuticals, vitamins, and alcohol. If you aren't sure about a product, call the manufacturer and ask if the product contains any of these "unsafe" ingredients.
• Learn whether you are in fact gluten sensitive. It can be hard to know if you should try a gluten-free diet. It's become trendy in some circles simply because people, gluten intolerant or not, believe it makes them feel better. But if you think you really are suffering from some sort of gluten sensitivity, read our story Hold the Wheat: Some People Really Are Gluten Sensitive, Doctors Say. If you want to voice your opinion on the topic of gluten-free labeling, sign 1in133.org's petition and letter to the FDA expressing concern over the lack of uniform standards for gluten-free foods.