The Gluten-Free Trend Is On the Rise, Even Though Celiac Disease Diagnoses Aren't

Self-diagnosed sensitivities could be fueling the trend, say researchers.

Photo by Danny Kim

More people are going gluten-free in recent years, according to a study out this week, especially young white women. But the prevalence of celiac disease—the main medical reason doctors and nutritionists recommend cutting out wheat products—hasn’t changed.

A common belief that gluten-free diets are healthier (and a growing availability of alternative breads and grain products) could be driving the trend, say researchers from Rutgers University. But the findings may also not be as contradictory as they seem: Since people with celiac disease have to eat gluten to experience symptoms, more people preemptively choosing not to could actually be contributing to the plateau in diagnoses, they say.

The article, published online by JAMA Internal Medicine, analyzed surveys and blood tests from more than 22,000 individuals conducted from 2009 to 2014. Overall, 106 people (0.69 percent) were diagnosed with celiac disease, and an additional 213 (1.08 percent) said they followed a gluten-free diet even though they were celiac-free.

Based on this sample, the researchers estimated that 1.76 million Americans have celiac disease, while 2.7 million people without the disease choose to go gluten-free for other reasons.

The rate of diagnosed celiac disease remained steady over time, only fluctuating between 0.58 percent and 0.77 percent for each year of the study. But the percentage of gluten-free participants without celiac disease rose consistently for the first three years—from 0.52 to 0.99 to 1.69 percent—before falling slightly, to 1.08 percent, the fourth year.

When the researchers broke down their results by age, gender, and ethnicity, they found that going gluten-free was increasingly popular among most subgroups—but that the rise was especially pronounced in three groups: white people, adults 20 to 39, and women.

There are many factors that might account for this change, the authors say. “First, the public perception is that gluten-free diets are healthier and may provide benefits to nonspecific gastrointestinal symptoms,” the write. (Here’s the truth: Going gluten-free can be a smart health choice for some people, but just because something is gluten-free doesn’t mean it’s not still filled with refined carbs and unhealthy ingredients.)

There are also a lot of people with gluten sensitivity—about 18 million Americans, according to one estimate—and an increasing number of people are self-diagnosing themselves, say the researchers. A gluten sensitivity is not the same as celiac disease, and it wouldn’t show up on a blood test like the one given in the study. But it can still cause unpleasant symptoms like bloating, stomach pain, and fatigue.

So what does all this mean, exactly? It’s likely that some people are jumping onto the gluten-free bandwagon because they think it’s healthy or a ticket to weight-loss—a “fad component,” as lead author Hyun-seok Kim, M.D., describes it—while others are simply paying better attention to their health and eliminating foods that don’t agree with their bodies.

The study wasn’t able to determine the reasons behind the trend, and the authors can only make assumptions. “What I can tell is that people need to discuss [their reasons] with their primary care doctor or gastroenterologist,” says Dr. Kim. Among other reasons, he says, going on a gluten-free diet before you’re diagnosed with celiac disease can cause a false negative on the blood test—so it’s important to let your doctor know if you’ve done so.

If you do decide to try a gluten-free lifestyle, there are a few things you can keep in mind to avoid potential health pitfalls: Eat more fruits, vegetables, lean meats, and naturally gluten-free grains like brown rice, quinoa, and buckwheat, says Dee Sandquist, RD, a spokesperson for the American Dietetic Association, instead of simply choosing processed foods or sweets that happen to be labeled gluten-free. And be sure you’re getting enough vitamins B and D; gluten-free foods don’t tend to be fortified with these like regular bread products are, so you may have to get these nutrients from other sources.