Gluten-Free Craze Is Boon And Bane For Those With Celiac Disease

Gluten is the dietary boogeyman du jour.

And for people with celiac disease, a serious autoimmune disorder, gluten — a protein found in wheat, rye and barley — really is the boogeyman, triggering painful gastrointestinal inflammation and other symptoms. For these people, the phenomenal popularity of gluten-free diets has been both a blessing and a curse.

Kristen Deschamps, a university student in Calgary, Alberta, says that when she was diagnosed with celiac disease four years ago, "it was virtually impossible to find gluten-free products, and if you did, they tasted terrible."

But now she says she can easily find gluten-free doughnuts and pastries.

The profusion of gluten-free foods has made social events much less isolating, says Molly Lewis, a 28-year-old human resources professional in DeRidder, La., diagnosed with celiac disease in early 2014. "Having access to replacement foods helps you feel more included in events, parties and holidays," Lewis tells me.

But wider availability of gluten-free options has come at a price: Some people afflicted with celiac disease say their disorder isn't always taken seriously when they eat out.

"The biggest problem I experience is that restaurant servers don't understand the difference between being celiac and going gluten-free as a lifestyle choice," Deschamps says. "You can see the reaction where they think I'm just trying to lose weight or on a fad diet. I see eye-rolling."

Indeed, gluten-free has been one of the biggest diet trends of recent years. Although less than 1 percent of the population has celiac disease, a 2013 poll found that 30 percent of American adults say they are trying to avoid gluten. And it's not just the U.S.: Canadians and Europeans are increasingly going gluten-free, too.

There's a lot of confusion around gluten, even among people who eschew eating it, as late-night talk show host Jimmy Kimmel humorously demonstrated last year. The dramatic growth of the gluten-free movement has also spawned a vigorous backlash, with critics dismissing it as just the latest dietary fad.

"A lot of people who don't know much about [celiac disease] liken it to the Atkins diet," Lewis says. When she tells people that she avoids gluten for medical reasons, she says, "in many cases, I'm viewed as being difficult or seeking attention instead of just trying not to get sick."

Lewis says it has become worse in the past year. "Four out of five times, when I eat out, I find that my condition was not taken seriously. I can tell by the reaction from the server. They'll look at me like I'm crazy, and I know I'm going to get sick" because gluten will end up in the food, she says. For Lewis, getting sick involves gastrointestinal distress, followed by acne and negative mood changes lasting a week or more.

Deschamps, who also works as a restaurant server, experiences it from both sides: She sees customers order gluten-free meals washed down with a gluten-filled beer. On multiple occasions when dining out, she says, she has been emphatic to servers about her condition but was still served foods containing gluten. She has had major exposures resulting in "severe stomach pain, like a very sharp stabbing — sometimes to the point where I can't move for several hours."

Krista Moise, a 43-year-old chemist in Lively, Ontario, was diagnosed with celiac disease eight years ago. "Because so many are doing gluten-free as a lifestyle now," she says, "I'm embarrassed to ask for a gluten-free meal because of people judging me."

Moise says some gluten-free eaters who don't have her disorder can sound like ex-smokers talking about cigarettes when they say, "Gluten is just so bad for you." She says it's a "holier than thou" attitude that rubs her the wrong way.

"I don't want to be lumped in with these people," says Moise, who says she recently was sick for days after eating an allegedly gluten-free meal at her stepdaughter's wedding.

Many people who avoid gluten have diagnosed themselves with nonceliac gluten sensitivity, a condition that describes less severe reactions to eating the protein. These folks say that eliminating gluten from their diet makes them feel better.

But, as The Salt has reported, gastroenterologists who are trying to untangle the issue are coming to believe that only a very small number of nonceliac people are genuinely experiencing gluten sensitivity.

As gastroenterologist Joseph Murray, a professor of medicine at the Mayo Clinic who studies celiac disease, told The New Yorker, "Everyone is trying to figure out what is going on, but nobody in medicine, at least not in my field, thinks this adds up to anything like the number of people who say they feel better when they take gluten out of their diet."

Some researchers suspect that people who attribute their gastric distress to gluten intolerance are more likely to be reacting to a type of carbohydrate found in wheat and other foods called FODMAPs. Some of these scientists have suggested a better term would be "wheat intolerance."

Aside from the perceptions some have that going gluten-free improves their health, the proliferation of gluten-free labels also sends the message that gluten must be bad. Dr. Ovidio Bermudez at Eating Recovery Center in Denver suggests that some people who are ditching gluten may simply see it as a quick shortcut to health.

"As we [deal] with more stress and greater complexity in how we live, work and play, we are looking for ways to be healthier, and it's taken a toll," Bermudez tells me. For some people, he says, avoiding gluten can be "a way to move towards health and reassure themselves that they're doing something 'right.' "

Unfortunately, such people who simply see a health halo around gluten-free may unwittingly be making life more challenging for those with celiac disease, by contributing to an environment where food servers have come to dismiss gluten avoidance as a silly fad that isn't worth taking seriously.

James S. Fell is a syndicated fitness columnist based in Calgary, Alberta.