Miserable – that’s how Christine Auman describes the 12 years of her life before her celiac disease diagnosis. She was bowled over by fatigue, anemia, swollen joints, vitamin D deficiency, heart problems, dental problems and more.
“I was passed around from doctor to doctor,” recalls the Doylestown, Pennsylvania mother of two. “Nobody could diagnose me.” Like other patients with puzzling symptoms, she was even advised to see a psychiatrist.
Swollen joints in her hands and feet eventually led her to a rheumatologist, who diagnosed her with celiac disease and referred back to her family physician. But that wasn’t the end of Auman’s woes, since the doctor was only superficially informed about her condition. “They gave me a piece of paper that just said: ‘No barley, no wheat, no rye,’” she recalls.
Confused and seeking to educate herself, Auman turned to Dr. Google – the Internet, that is – to learn more. The result? “I became afraid to eat,” she says. Although her symptoms improved on her new gluten-free diet, she found herself “starving” and quickly dropped 15 pounds. In some ways, it was a welcome loss for Auman, who had been moderately overweight. But feeling famished wasn’t sustainable.
Driven by constant hunger and a burgeoning depression, Auman headed to comfort foods found in the gluten-free aisle of the grocery store. “Because I felt like I couldn’t eat anything, I overate the foods that I could eat,” she says. It wasn’t long before she gained back the 15 pounds – “and then some.” Now, she had a life-changing autoimmune disease and a weight problem to worry about.
Gluten-Free ‘It’ Diet Myth
It turns out Auman’s case isn’t unusual. In a 2006 study published in the American Journal of Gastroenterology, a whopping 81 percent of celiacs on the gluten-free diet gained weight within two years after diagnosis, and the dietitians whom Allergic Living spoke to say they see this all the time.
That’s what makes the gluten-free diet’s recent rise in popularity among those who have not been diagnosed with celiac disease so peculiar.
Gluten-free is today is what low-carb was 15 years ago: the “It” diet. Inspired by non-celiac celebrities who tout gluten-free as a way to slim down (we’re looking at you, Gwyneth Paltrow and Russell Crowe), North Americans are turning to the diet in droves. According to a study conducted by consumer market researchers the NPD Group, one-quarter of Americans are trying to reduce or completely avoid gluten in their diets. But if they are doing so to lose weight, they are terribly misguided.
For those with celiac disease who need to adapt to the gluten-free diet for their health, finding there’s weight gain involved along with the diagnosis is the ultimate kick in the pants.
Talk about an emotional rollercoaster: the celiac journey begins with years of feeling awful, with no answers in sight; then, the thrill of a diagnosis; next, the grieving period as celiacs say goodbye to favorite foods; then optimism, as you find a gluten-free diet you can live with; and finally, the frustration of gaining weight on the regimen that heals.
Feeling the Loss of Foods
Anna Baldassini, a 40-something mom and accountant, was diagnosed with celiac disease in 2009. She had been experiencing unusual symptoms since 2003, including iron deficiency and unexplained weight loss. Standing 5-foot-6, she’d long hovered between 160 and 170 pounds, but was down to 150 after her second child was born in 2004.
“People started saying I looked a little skinny,” she recalls. “I hadn’t been that low since I was 16, so I was liking it.” Still, a nagging worry about her iron levels led her to an eventual celiac diagnosis.
Baldassini is an avid cook and baker. Determined not to feel deprived or go hungry, she immediately immersed herself in all things celiac – especially experimenting with gluten-free baking. Within a year, she had gained 30 pounds. “I wasn’t paying attention. My weight started creeping up.”
The adjustment was hard, says Baldassini, who lives north of Toronto with her husband and two kids. “I’m Italian, so I love to bake bread. Pizza and me are good pals. I felt like these things got pulled away from me.” That’s a common reaction among the newly diagnosed.
“Celiacs go through a series of emotions, including a mourning period of giving up their favorite foods,” says registered dietitian Beth Wall, a nutrition support specialist at the University of Chicago’s Celiac Disease Center. These feelings of sadness and anger are fueled and complicated by a subsequent weight gain. It just doesn’t feel fair.
So what is behind the extra pounds with a gluten-free diet? There are three main factors at play.
3 Factors with Weight Gain
Healing Brings Calories: When a person with celiac disease eats foods containing gluten, the immune system responds by damaging or destroying the villi – the tiny, finger-like protrusions lining the small intestine that, among other things, help the body to absorb nutrients. But once on a gluten-free diet, the intestinal lining and the villi usually heal.
That’s when patients finally start absorbing protein, calories and fat, explains Alexandra Anca, a registered dietitian, celiac specialist and author of the Complete Gluten-Free Diet & Nutrition Guide.
The result: those with celiac disease who eat the exact same amount of calories, protein and fat as they always did can suddenly begin to gain weight.
Disproportionate Portions: Thanks to those damaged intestinal walls that don’t absorb nutrients, many with undiagnosed celiac disease can eat large portions of food without gaining weight. “Before being diagnosed, many celiacs become accustomed to eating more food than they need,” says Alice Bast, founder and president of Beyond Celiac, the Pennsylvania-based non-profit group devoted to education and awareness of the disease.
Once celiac disease is diagnosed and the diet undertaken, however, Wall notes that “it can be difficult for adults to modify their eating habits and reduce the quantity of food consumed in order to maintain a healthy weight.”
Consider this: studies show that it takes an average of 11 years to get diagnosed with celiac disease. That’s 11 years of going back for seconds or thirds without gaining a pound. It’s not an easy habit to break.
Foods That Pack Extra Punch: Perhaps the most significant factor in weight gain on a gluten-free diet is unrestrained consumption of alternative foods. Twenty years ago, people with celiac disease had little choice but to banish all breads, cookies, cereals, cakes and crackers from their diets. Today, grocery stores across North America boast an ever-growing number of gluten-free packaged foods.
These foods are tastier than ever, convenient and allow those with celiac disease to enjoy foods like those they used to eat, helping them to feel more “normal.”
Among the aisles of gluten-free products, shoppers can find healthful, nutritious options. But to improve taste, many gluten-free packaged foods contain higher amounts of fats and sugars than their gluten-containing counterparts. And that means higher calorie counts in many cases. For example, Wall says gluten-free pretzels can have seven or eight grams of fat per serving, whereas standard pretzels might have zero to two grams.
There’s also the issue of density. Many gluten-free foods have a dense texture, resulting in smaller average portions when compared to gluten-containing foods. For example, if you’re used to filling your bowl to the top with your old cereal and you’re still doing so now with gluten-free cereal, you’re probably eating more servings than you were before, even though the bowl is filled to the same spot.
That said, “it’s important to feel normal and eat a sandwich,” says Bast, who cried when she ate her first piece of gluten-free bread. She is well aware of the importance of quick and convenient foods for families. “I know how difficult it is for parents,” she says. “They are looking for convenience.”
In some ways, this amounts to a narrow-focused version of the challenge of all North Americans: how to maintain a healthy weight despite the growing availability of convenient tasty treats. But there’s one key difference. In people with celiac disease, achieving a healthy weight is usually secondary to getting the disease under control. After all, a few extra pounds are nothing compared to a daily onslaught of symptoms including diarrhea, cramping, bloating or flatulence.
What’s more, according to the Center for Celiac Research at Massachusetts General Hospital, untreated celiac disease can lead to osteoporosis, organ and gynecological disorders, and even certain types of cancer.
“I think healthy eating habits are important,” notes Bast. But for anyone with celiac disease, “before anything else, make sure you are gluten free.”
Related Reading: Top 5 Gluten-Free Weight Tips