Why Gluten-Free Foods Aren't Always Gluten-Free

After a decade of trying, the FDA still doesn't have a clear definition of the gluten-free food label. Which means gluten-free food sometimes isn't.

May 9, 2011

The label may say "gluten-free," but that doesn't mean it is.

RODALE NEWS, EMMAUS, PA—People suffering from celiac disease and other forms of gluten intolerance are fed up with the U.S. Food and Drug Administration (FDA). So last Wednesday, they took to the streets of Washington with the world's largest gluten-free cake demanding that the agency stop dragging its feet on defining what it means for a food to be truly gluten free.


The Gluten-Free Labeling Summit, where the big cake was headed, convened food-industry representatives and researchers from leading health institutions together with FDA representatives and members of Congress. At issue was the fact that, despite a mandate from Congress in 2003, the FDA has yet to come up with laws regulating the use of the label "gluten free" on foods. "We don't understand why this is taking so long, when the European Union and countries that are arguably less developed in terms of their food regulations already have effective gluten-free labeling laws," says Jules Shepard, owner of a gluten-free baking company and cofounder of the advocacy group 1in133.org (that's the suspected prevalence of celiac disease, a form of gluten intolerance, in the population), which organized the summit.

THE DETAILS: Like other claims on some food labels—"natural," "antibiotic-free," and "free-range"—"gluten-free" doesn't really mean anything, even though, according to law, the FDA was supposed to come up with a definition as far back as 2006, and with standards for gluten-free labeling by 2008. So consumers have no way of knowing whether a "gluten-free" product truly contains no gluten. Some gluten-free products may indeed be free of wheat gluten, but not of rye or barley gluten, says Pam King, director of operations and development at the Center for Celiac Research at the University of Maryland. "And honestly, there is no such thing as zero gluten because of cross-contamination," she adds. Her group, along with the others who sponsored the summit, is pushing for a limit of 20 parts per million of all types of gluten in products labeled gluten free. That's the limit used in international gluten-free labeling laws. and a level that most physicians agree is tolerable for people who can't tolerate gluten.

WHAT IT MEANS: The lack of concrete labeling laws could put an ever-increasing number of Americans at risk. A recent study suggests that as many as 18 million Americans suffer from gluten sensitivity, a condition in which people react negatively to wheat, rye, or barley gluten but never test positive for the more serious celiac disease. It's estimated that about 3 million total suffer from celiac, an autoimmune disorder that results in diarrhea, fatigue, nerve damage, rashes, or anemia (among other symptoms) after eating gluten from those same food sources. A separate condition, wheat allergy, is affecting a growing number of children. Although exact statistics on the prevalence of allergy to wheat aren't available, wheat is considered one of the eight allergenic foods, alongside dairy, eggs, tree nuts, fish, shellfish, soybeans, and peanuts, that account for 90 percent of food allergies in this country.

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.