When Going Gluten-Free Is Dangerous
Has a ‘g-free’ diagnosis simply become code for ‘diet’—or eating disorder?
As celebrities at the Sundance Film Festival this weekend nibble on gluten-free granola treats, somewhere in a delicious lab Dunkin Donuts chemists continue perfecting a new gluten-free donut. It’s just another week in our increasingly gluten-intolerant world.
But as traditional dieting becomes less trendy —and an explosion of gluten-free products land on grocery shelves—some doctors worry that a growing number of people are diagnosing themselves with a gluten allergy in order to have a socially acceptable method to lose weight. Or even worse, to mask an eating disorder.
Annakeara Stinson, 25, says a doctor suggested she cut out gluten after she started experiencing gastrointestinal problems. She was never tested for celiac disease, the autoimmune disorder gluten-free eating is meant to treat. Stinson immediately latched onto the diet, and lost close to 20 pounds.
“People noticed that I lost weight, and commented that I was such a ‘healthy’ eater, and that was positive reinforcement,” Stinson says. “Ultimately, my gluten-free diet became a weird space I put emotional baggage into. From the outside, people just thought I had allergy issues, but really, it veiled all these other things that were going on.”
“I remember thinking if I were to let go and start eating wheat again, that I would balloon,” says Stinson, who has written about her experience on xoJane.
To be sure, there are many people who need to go “g-free,” as it’s called in the commercial parlance, for their health—specifically those with celiac disease, which affects roughly three million Americans. But researchers estimate that some 80 percent of Americans currently going gluten-free do not have celiac disease.
So what gives? They may have a condition called non-celiac gluten intolerance, otherwise known as gluten sensitivity, which affects about 18 million Americans.
Or maybe they’re just not sure.
“People read these articles on gluten and think this might be the answers to the problems they may have,” says Dr. Mark Borigini, a rheumatologist who recently wrote about gluten sensitivity for Psychology Today. “If you’re using this gluten fear as just another channel for a bigger problem—like an eating disorder—then that’s of real concern.”
“For whatever reason, gluten just doesn't agree with me,” says Kylie Robertson, 24, who recently went gluten-free. “I feel a million times better when I don't eat it, and that's good enough for me. This gluten-free thing can be seen as a weight-loss solution, but that's not my intent. Nor do I have an allergy—not one that's been diagnosed anyways! I've also had celiac screens come back negative. So what the heck am I?”
Good question. Much about gluten sensitivity, and its apparent rise in diagnoses, remains a mystery. Some doctors have suggested the hygiene hypothesis, which posits that children’s immune systems may not be as equipped to digest gluten as they once were because they’ve grown up in overly sterile environments. “Gluten sensitivity is the new kid on the block,” says Alice Bast, president of the National Foundation for Celiac Awareness. “We definitely need more research on it, and we need to find biomarkers for it so we can test more easily for the disorder.”
Until then, the blossoming g-free industry can capitalize on the confusion. The market has grown 28 percent annually since 2008, reaching $4.2 billion in sales in 2012, according to the research firm Packaged Facts, with an estimated 18 percent of adult consumers buying or eating gluten-free products. The FDA said it would issue new, and possibly stricter, rules for labeling gluten-free foods by the end of 2012, but has yet to release the new regulations.
Tricia Thompson, a dietician and author of Gluten Free Watchdog believes strongly that non-celiac gluten sensitivity is “absolutely” a real medical condition, and one doctors should be taking seriously. But its growing reputation as a trendy weight-loss routine “drives me bonkers,” she says. “What really happens is people tend to cut out a lot of junk food when they eliminate gluten—that’s what results in the weight loss.”
Data on the connection between gluten sensitivity and eating disorders is still lacking. Researchers from Penn State did suggest evidence of a link between women who suffer from celiac disease and an increased likelihood of depression and disordered eating. But for doctors dealing with patients with gluten sensitivity, warning signs of an eating disorder may be more difficult to detect.
When it came to her own gluten-free saga, Stinson says she felt like doctors ignored red flags. “I felt like they weren’t reading what was going on with me at all. I wanted them to look at me and realize, here’s a girl who’s radically changed her diet, and has been fluctuating weight. Maybe this is her way of reaching out for help.”
For Stinson, it took a vacation where she allowed herself to start eating gluten again to begin recovery.
“I felt like ‘Finally! I’m free!’ I realized I’d always felt hungry and unsatisfied,” Stinson says. “I tried to start to learn that feeding myself is about cultivating a healthy listening relationship.”
As for Robertson, she says she’s noticed a huge improvement in her health and mood since giving up gluten.
“If this is all some twisted placebo effect, I don't give a damn,” Robertson says. “I feel better. Regardless of whether the change is in my head or my stomach, and I don't intend to mess with that.”