May is Celiac-Disease Awareness Month. Which might seem unnecessary, if the superfluity of “gluten free” labels and advertisements were any indication of people’s awareness of the disease.  

Gastroenterologist Norelle Rizkalla Reilly believes it’s quite clearly not. She directs the Celiac Disease Center’s pediatric program at Columbia University. Her understanding of public misconceptions comes not just from daily immersion in the world of gluten-related immune disorder, but from a careful analysis of the true window into our souls: our Google histories.

On Friday she published the chart below in the Journal of Pediatrics:


Google Search Term Popularity: "Celiac Disease" Versus "Gluten Free"

(Reilly / Journal of Pediatrics)

“I thought that was particularly illustrative of how the popularity of this diet has increased, totally out of proportion to any sense of awareness of celiac disease,” Reilly told me, an air of exhaustion about her after a “particularly grueling” day in the clinic.

There the foundation of her practice is careful, deliberate implementation of a gluten-free diet, so she has been concerned to see that therapy slip out of its serious medical context. For people with celiac disease, avoiding gluten is a medical necessity. Done carefully, it can take a person from incapacitated to symptom-free in short order, as the lining of the small intestine returns to normal.

Like most medical interventions, though, this one has not been shown (in placebo-controlled studies) to benefit people who do not have the disease. Celiac disease is known to affect about one percent of people. Yet in a global survey of 30,000 people last year, fully 21 percent said that “gluten free” was a “very important” characteristic in their food choices. Among Millennials, the number is closer to one in three. The tendency to “avoid gluten” persists across socioeconomic strata, in households earning more than $75,000 just the same as those earning less than $30,000, and almost evenly among educational attainment. The most common justification for doing so: “no reason.”

In the medical journal, Reilly’s message is that physicians should be educating people that this is not okay. “You have the gluten-free industry speaking with a megaphone,” she said, “and we're trying to do our part to put accurate information into circulation.”

It’s in that context that she addresses the many risks that come with taking on a gluten-free diet when it is not medically warranted. That includes studies that have found increased rates of metabolic syndrome among people who switch to a gluten-free diet, presumably due to poor nutritional quality of gluten-free replica products. Other studies have reported people developing deficiencies in folate, thiamine, and iron, which are added to grain products by law. When researchers in Spain compared 206 gluten-free food products to their traditional gluten-containing counterparts, the team found “marked differences” in the nutrient and caloric contents. “This may represent a nutritional concern for celiac patients,” the researchers concluded, “but it may also be a problem for non-celiacs who consume gluten-free rendered foods.”

For parents concerned about arsenic in rice, Reilly regularly advises that many gluten-free products replace grain products with rice (which she sometimes refers to as “secret rice”). To minimize risk of arsenic exposure, the American Academy of Pediatrics recommends that kids simply eat a diverse diet. Eliminating all foods that contain gluten makes that goal only more difficult.

Among people of all ages, she notes, several small studies have now found deterioration in quality of life after the switch. For children especially, imposing a gluten-free diet can be socially isolating. In the journal Pediatrics, kids with celiac disease who attended a week-long gluten-free camp, where every food was gluten free by default, “demonstrated improvement in well-being, self-perception, and emotional outlook”—which seemed to be because the environment “alleviate[d] stress and anxiety around food and social interactions.”

Life is not gluten-free camp, though. In the real world, gluten-free versions of foods are most often more expensive than the standard formulations, as well. (An especially pointed factor for the 20 percent of households earning less than $30,000 annually and yet worrying about procuring gluten-free products.)

“We obviously have a lot of patients who need to be on a gluten-free diet,” Reilly added, “and I don't mean to alarm those individuals.”

Given the disproportionate number of people who are eating this way without reason, though, there is cause for alarm. Especially among the many people who now mistakenly and blindly conflate “gluten free” and “healthy.” And among those who believe they may have celiac disease but do not get tested. Proper diagnosis is crucial not only to be certain that avoiding gluten and incurring the costs and risks above is truly necessary, but because other conditions sometimes go hand-in-hand with celiac. Those include the skin condition dermatitis herpetiformis, lymphoma, anemia, depression, liver disease, and osteopenia (weak bones). Having a proper diagnosis may inform future medical care not just for patients, but for their families.

As Reilly put it, resolutely but without alarm, “Anything that could potentially derail detection of this disease, including starting the diet on one's own, should be avoided.”