The Truth About Gluten Sensitivity That No One Wants To Hear

Like many food trends, the gluten-free diet has both a legion of followers and a lot of controversy surrounding it. Christy Harrison, MPH, RD, CDN, has her own tale of the way gluten — or a lack thereof — played a role in changing her life dramatically. Here, she generously and publicly shares her story, because she knows there are others out there to whom it may be all too familiar. — KM

I first heard about gluten in 2003, when a friend was diagnosed with celiac disease. It was a dark time in my own life. I was terrified about my impending college graduation and the start of my career; I hadn't gotten my period for nearly a year, and none of the many doctors I'd seen could explain why. I'd recently gone on my first diet and began exercising religiously, in an effort to lose a little weight I'd gained during my year abroad, but the doctors didn't see anything problematic about that — even after I dipped below my old weight. I also told them about a slew of other symptoms that had begun around the same time: fatigue, constipation, mental fogginess, abdominal pain, dry skin, and acne. But no one had any real answers. Looking back, it seems so obvious that I was dealing with an eating disorder. At the time, it never occurred to me — or anyone else. My friend filled me in about the details of her diagnosis. Celiac disease is an autoimmune condition whose symptoms are triggered by even the smallest traces of gluten, a protein found in wheat, barley, rye, and a few other closely related grains. I was instantly struck by how similar her symptoms had been to mine. My friend said they had all essentially disappeared once she started a gluten-free diet. I made more doctors' appointments to get tested for celiac disease (first and second opinions: negative) and started digging around on gluten-free blogs and message boards. There, I found a whole world of people who were going through the same thing I was. Some of them were talking about other symptoms I hadn't even felt comfortable sharing with my doctors: anxiety, depression, and bingeing. Many of the bloggers said it had taken a long time for them to get diagnosed, and some said they'd just ended up going gluten-free without a diagnosis because the diet made them feel so much better.

Everything seemed to fall into place. My body wasn't broken; I was just sensitive to gluten!

Riding that initial wave of euphoria, I tried cutting gluten from my diet for two weeks. At first, it seemed like my symptoms were improving, but by the end of the trial, I couldn't really tell if I felt better or worse. Disappointed, I still clung to the notion that a sensitivity might emerge down the line, and I committed to going gluten-free most of the time. My OB/GYN finally convinced me to go on birth control, which brought my period back, but the other symptoms persisted. Certain I would gain weight from the birth control (and that I was "too fat" as it was), I became even more compulsive about exercise and calorie counting. Blaming gluten allowed me to stay deep in denial, so sure that the problem was what I was eating rather than how (or how little) I was eating. Between all the physicians and specialists I saw, you'd think someone would have screened me for an eating disorder. I certainly met all of the criteria for "Eating Disorder Not Otherwise Specified," but I can understand why they missed me. All too often, medical doctors are not adequately trained in recognizing eating disorders, and furthermore, I didn't fit the stereotype. I was definitely too thin for my frame, but I never looked outright emaciated, so nobody thought my problems might be related to food restriction. It had to be something else. That something else, I resolutely believed, was gluten. So, my disordered eating persisted for years, through the start of my career and a cross-country move from the Bay Area to Brooklyn. As a young journalist starting to specialize in food and health writing (go figure), I was expected to delve into the nascent science on gluten sensitivity. I read up on everything, put myself on a new and improved gluten-free diet, and wrote several articles about the potential benefits of avoiding the maligned protein composite. I went off the diet long enough to get re-tested for celiac disease (third, fourth, and fifth opinions: negative); then, I took the advice of a well-meaning gastroenterologist who told me not to worry about a diagnosis and just to avoid gluten if it made me feel better. I still wasn't completely sure if it did, but now I had a medical authority telling me to give it a shot.

Fortunately, soon after my move to NYC, I started seeing an amazing therapist to deal with my anxiety. It took me close to a year to tell her about my bingeing, and then it all tumbled out: the compulsive exercise, the body dysmorphia, the obsession with gluten. Painful as it was at the beginning, this was the turning point. Therapy helped me identify the harsh, critical voice in my head that berated me for eating in response to normal hunger. I was working as an editor at Gourmet magazine, surrounded by colleagues who had healthy relationships to food. The job both encouraged my recovery and ignited my passion to help others with their own. I decided to go back to school and enrolled at NYU to get a master's degree in public health nutrition and a registered dietitian's license. I wasn't completely recovered yet, but my weight was restored. School helped me dispel those lingering disordered thoughts, thanks to the science and logic of food. I was introduced to the book Intuitive Eating — and it blew my mind. Now I understood that I didn't need to count calories to maintain my biologically appropriate weight, because my hunger and fullness instincts took care of that remarkably well. Finally, it dawned on me: I was eating gluten every day, and all of my physical symptoms were gone. As I slowly loosened the reigns on my eating, the binges became fewer and farther between. About six months before I got my master's degree, they stopped altogether.

To be clear, there's no question that a gluten-free diet is medically necessary for those who have celiac disease. Avoiding some or all gluten-containing grains is also essential for people diagnosed with wheat or gluten allergies. But the other cases — the self-diagnosed, gray-area sorts of cases, with lots of potential confounding factors — can be problematic. Today, as an RD specializing in eating disorders, I know I can't generalize from my personal experience when treating clients, who all have their own unique medical and psychological histories. But I would never counsel anyone to follow a gluten-free diet unless they'd been diagnosed, using validated diagnostic tests, with celiac disease or a wheat/gluten allergy.

Many people suspect themselves of having a lower-grade intolerance or sensitivity to gluten (especially now that going gluten-free has become such a trend). But, in reality, non-celiac gluten sensitivity (NCGS) is often poorly understood, misdiagnosed, improperly self-diagnosed, and, in all likelihood, not even related to gluten at all. The only research to date showing that it's beneficial to go gluten-free for autoimmune diseases was conducted in subjects with celiac disease, who should obviously avoid gluten anyway. And for people who are vulnerable to disordered eating (which is the vast majority of young American women and an increasing number of men), cutting out gluten without medical necessity can mask or perpetuate restrictive eating patterns and make true healing far more difficult — just as it did for me. I see this in my clients all too often. There are the chronic dieters who go gluten-free because they think it will help them lose weight (it won't). There are the health-minded people who try a gluten-free diet because they've read that gluten and grains are killing us (they aren't). And there are the people with eating disorders, for whom avoiding gluten has become one of the many irrational, harmful "rules" that are so common in these diseases. So when I meet people who think they may have a sub-clinical sensitivity to gluten, I always ask: Is it possible that disordered eating could be the problem? It's a question worth exploring, and one that just might save you years of pain. Christy Harrison, MPH, RD, CDN is a registered dietitian nutritionist and certified Intuitive Eating counselor. She writes about food and nutrition for various publications and hosts Food Psych, a podcast exploring people's relationships to food. Follow her on Twitter at @chr1styharrison.
The Anti-Diet Project is an ongoing series about intuitive eating, sustainable fitness, and body positivity. You can follow Kelsey's journey on Twitter and Instagram at @mskelseymiller or #antidietproject (hashtag your own Ant-Diet moments, too!). Curious about how it all got started? Check out the whole column, right here. Got your own story to tell? Send me a pitch at kelsey.miller@refinery29.com. If you just want to say hi, that's cool, too.

If you think you or someone you know may have an eating disorder, visit the National Eating Disorders Association to find help.