Celiac Disease and Eating Disorders
Not a Choice
“Eating disorders are sometimes glamorized in the media—but living with one is terrible,” says Tribole. “They’re not a choice—they hijack your brain.”
According to the National Institute of Mental Health (NIMH), an eating disorder is an illness that causes serious disturbances to one’s daily diet—whether it’s eating extremely small amounts of food (as in anorexia) or severely overeating (as in binge or compulsive eating). Often it starts out innocently enough. A person with an eating disorder may set out to just eat a little less (or more) but at some point, it snowballs out of control. Severe distress or concern about body weight or shape can also characterize an eating disorder.
Although the teen years tend to be a particularly vulnerable period, eating disorders are popping up at all ages, says Tribole. Of the estimated 10 million Americans battling an eating disorder (most of whom are women), anorexia is the least common type, binge eating is the most common, and bulimia, which involves a cycle of secretive binging and purging, falls somewhere in between.
Importantly, many people with eating disorders have symptoms that stop short of meeting the somewhat strict criteria for anorexia or bulimia. These individuals may be diagnosed with eating disorder not otherwise specified (EDNOS). For many, EDNOS doesn’t sound as severe as anorexia or bulimia but it can be just as physically and emotionally damaging.
Beth suspects she’d be labeled with EDNOS, although, like many, she never sought professional treatment for her eating disorder.
“I didn’t lose enough weight to be considered anorexic and I didn’t purge after a binge like someone with bulimia.”
“There’s not enough data to say which type of eating disorder is most prevalent in those who have celiac disease,” says Rupa Mukherjee, MD, a clinical fellow in medicine and gastroenterology at BIDMC. “It’s also not clear which comes first—celiac disease or the eating disorder. In the Austrian study, celiac preceded the eating disorder in over 80 percent of cases but the opposite has been reported, too.”
Both celiac disease and eating disorders can be elusive to physicians, she points out. Celiac can have vague symptoms for years and likewise, eating disorders don’t start overnight. There’s also a lot of denial and concealment with eating disorders, making it hard for physicians not looking for them to spot them.
In Mukherjee’s experience, the period soon after diagnosis with celiac can be very stressful—the diet is new and very demanding, and, on top of that, patients frequently gain weight. (When the intestines heal, they properly absorb nutrients again, including calories.) “As a clinician when I’m with a patient, I ask myself, am I sensing any body dissatisfaction issues?”
Next: Diet Danger