Celiac Disease and Eating Disorders
Not a Choice
When Beth was 19 and a sophomore in college, she began to cut back on how much she was eating. In high school, she had always thought she could stand to lose 5 pounds—“What girl doesn’t?,” she asks—even though at 5 foot 8 inches, tall and 130 pounds, she was slim. She had dieted a few times then, following the low-carb Atkins plan. This time around, however, her motivation to diet wasn’t just about dropping a dress size. It was also because she often felt uncomfortably full and bloated after eating.
“I became kind of fixated on not feeling so full,” she says. “Then it changed into not wanting to feel full at all.”
Before long, Beth was counting calories of whatever she put in her mouth and keeping her tally under 500 calories a day.
“I did everything I could to stay away from food,” she says.
The less she ate, the more she obsessed about food. She’d spend hours carefully planning what she would or wouldn’t eat each day—counting the number of peanuts or Cheerios she’d allow herself, while she staved off sharp hunger pangs with pickles, sugar-free jello and crushed ice. After starving herself for days or weeks at a time, she’d break down and binge.
“It was like my survival instinct took over and I’d binge on anything and everything I could find. Afterward, I’d feel so guilty—and panic about my weight—I’d go right back to restricting again,” says Beth, now 27. “It was hell.”
In between the starve-binge cycles, Beth managed to go through periods where she ate more “normally.” Then something stressful would happen—a breakup or exam period—and she’d return to restricting again.
During her junior year, Beth was hit with a bout of back pain. She went to the doctor, and, while there, happened to mention her trouble with bloating and “major stomach expansion.” The doctor ordered a few blood tests but didn’t indicate any specific concerns. A week later, she got a phone call from a nurse telling her it looked like she had celiac disease. In a matter of days, Beth underwent a small bowel biopsy and the diagnosis was confirmed.
“I didn’t know if having to go gluten free would help or hurt my eating issues,” she says. Guessing the latter, Beth decided to tell her doctor about her eating disorder. Until then, she had tried her best to keep her behavior under wraps.
“It’s really hard to admit the self-destructive things you do to yourself,” she says. “Maybe I didn’t explain it well because my doctor’s only response was to up my antidepressant dosage.” (Beth had taken a low-dose antidepressant since she was 16.) She filled the new prescription and gave the gluten-free diet a go—she wanted to get better—but it was a bumpy road.
“I felt deprived on the gluten-free diet,” she says. Even though she’d been severely restricting her calorie intake, she hadn’t faced the outright elimination of favorite foods. “Had I been able to eat a bite of something when I wanted it, like a gluten-filled doughnut or cookie, I think I could have escaped the starve-binge cycles more easily.” Instead, she struggled off and on with her eating disorder for the next four years.
Beth isn’t alone in dealing with an eating disorder and celiac disease. There’s plenty of company online in celiac and gluten-free forums. Many describe similar stories of celiac symptoms (such as extreme bloating) leading them to restrict or even stop eating altogether for days at a time. Others describe throwing up to relieve discomfort after eating, setting the stage for bulimia. Some wonder about a gut-brain connection and how it could play a role in celiac disease and eating disorders.
Evelyn Tribole, MS, RD, a nutrition therapist, has treated people with eating disorders since 1984. When her son was diagnosed with celiac disease as a toddler in 1996, she began to specialize in celiac disease, too.
“I’m seeing two things happen right now,” she says. “I’m seeing more patients who have both celiac disease and an eating disorder and, secondly, I’m seeing more in the medical literature documenting a link between the two.”
In 2007, researchers at the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) in Boston explored ten cases of eating disorders among their patients, noting an “association” between celiac disease and eating disorders. The following year, researchers in Austria looked at a much larger group of adolescents with celiac disease and found the rate of eating disorders was double that of adolescent girls without celiac disease (no males in the study had eating disorders).
“Based on what we have, we can say that eating disorders can be a significant comorbid [co-occurring] condition in patients with celiac disease,” says Melinda Dennis, MS, RD, LDN, nutrition coordinator of the Celiac Center at BIDMC. “In addition, there’s a well-established link between celiac disease and psychiatric disorders that frequently coexist with eating disorders, including major depression, anxiety and panic disorder.”
Earlier this year, a web-based survey looked at the “psychiatric functioning” of 177 American women with celiac disease and found over a third reported symptoms suggestive of depression and 22 percent reported patterns of disordered eating.
“Although some women reported just depression and some just disordered eating, many—17 percent—had both,” says lead author Danielle Arigo, a PhD candidate in clinical psychology at Syracuse University.
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 (see Sidebar on page 22). 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?”
A strict, lifelong gluten-free diet is currently the only treatment for celiac disease. With the constant attention on food and it’s preparation, it’s natural to wonder—particularly for those who develop an eating disorder after their diagnosis—how much the diet is to blame.
There are many reasons why someone may develop an eating disorder, according to Steven Crawford, MD, associate director of the Center for Eating Disorders at Sheppard Pratt in Baltimore, Maryland. “We know there’s a biologic basis, including a strong genetic component, to eating disorders,” he says. “Factors like depression, low self-esteem, perfectionism, as well as cultural influences to be thin can all play a role, too.” However, Crawford gives a nod to the possibility that the gluten-free diet—or other special diets—could contribute to an eating disorder, although probably not cause one on its own.
“Any time there’s a focus on food, as in the case with the gluten-free diet, it sets the potential for the development of an eating disorder, if someone is predisposed to one,” he explains. “Preoccupation with food is, on some level, necessary to manage celiac disease, but it can also promote obsessional food-related behaviors.”
There’s a major burden that comes with having a chronic illness, Mukherjee adds. When you couple that with a restrictive diet, it can lead to issues of wanting to exert control and autonomy.
“Very often, eating disorders can be associated with the feeling that you don’t have control over events in your life,” explains Crawford. “One’s weight or meal plan can be something to turn to and exert a sense of control over.”
In fact, celiac disease isn’t the only diet-mediated, chronic condition linked with eating disorders. The metabolic disorder phenylketonuria (PKU) has also been associated with them. In PKU, the body can’t metabolize the protein, phenylalanine (Phe), which is present in many foods, particularly high-protein ones. As a result, persons with PKU must follow a lifelong, low-Phe diet, which means no meat, milk, eggs, nuts and more. One study found 23 percent of women with PKU had “eating-disordered behavior.”
The same study found 33 percent of women with type-1 diabetes had “significant eating problems.” Type-1 diabetes is an autoimmune condition in which the body can’t make the hormone, insulin. Before each meal or snack, diabetics must carefully count the carbohydrates in their food and then calculate the amount of insulin needed to “cover” the carbs. This helps keep blood sugar regulated—the goal of treatment in diabetes.
“Unfortunately, people with diabetes may end up utilizing aspects of their illness in a misguided attempt to control body shape or weight” says Crawford. “For example, misuse of insulin may result in under-absorption of calories.”
A similar practice has been reported in those with celiac disease: they may intentionally eat gluten to facilitate weight loss.
Laura, 39, admits to this. When she was diagnosed with celiac two years ago, she gained ten pounds on the gluten-free diet. “I became really anxious about my weight until one day it hit me, if I cheated, I might shed a few pounds.”
The next day, Laura ate a few slices of regular, gluten-containing pizza. As she suspected, she lost three pounds, thanks to three days of unrelenting diarrhea. Since then, Laura’s cheated at least a dozen times, even though she knows it wreaks havoc with her body and compromises her future health.
Evelyn Tribole wants to be clear: It’s normal to be preoccupied by food when you’re first diagnosed with celiac disease. It’s normal to feel awkward in social situations with food or at restaurants. That’s not an eating disorder, she stresses.
Most experts recommend meeting with a dietician knowledgeable about celiac disease soon after diagnosis. If, after the initial stage of understanding how to eat gluten free, you still feel very overwhelmed or preoccupied by food, then it may be something to look at more carefully, Tribole says.
Warning signs of an eating disorder can include obsessively weighing yourself, over-exercising, compensating if you think you ate too much, avoiding social outings because you don’t like how you feel in your body and excessive anxiety about what you may eat in social settings. (Note: Concern that safe food is available outside the home is valid for those with celiac disease; however, once planning and safety precautions are in place, there shouldn’t be extreme anxiety.)
“An eating disorder may start with disordered eating—lots of rules and time spent around the eating process,” says Tribole. “Rules that don’t involve celiac disease can be a red flag.”
If you suspect someone has an eating disorder, try to talk to them very objectively about what you see, she suggests. Eating disorders can have very serious and permanent health consequences, including stunted growth, dental problems, osteoporosis, infertility, electrolyte imbalances, cardiac abnormalities and even death. According to the National Alliance on Mental Illness, anorexia has the highest mortality rate of any psychiatric illness.
However, eating disorders are treatable.
“We always recommend professional treatment and the earlier it begins, the better the outcome,” says Crawford. Treatment depends on the specific needs of the individual but often involves cognitive behavioral therapy (CBT), a type of counseling aimed at changing one’s thinking about food, eating and body image.
In general, about a third of patients with eating disorders do quite well with appropriate treatment, says Crawford. Another third improve with some good intervals followed by setbacks requiring additional treatment. Unfortunately, the other third have an ongoing, daily struggle with their illness.
“We don’t know if people who have chronic conditions like celiac disease have different recovery rates,” he says.
Crawford’s advice for those newly diagnosed with celiac disease? “Find variety and creativity in the gluten-free diet so that you don’t feel deprived. You never want to eat less—just differently.”
Although Beth struggled with her eating disorder for several years after her celiac diagnosis, looking back, she thinks it was a turning point. Her eating disorder gradually got better—the intervals between each starve-binge cycle, which typically lasted a few months, started to get longer.
Beth attributes part of her recovery to the resolution of her bloating and feelings of fullness. A slow but significant improvement in her depression helped, too. Beth suspects her depression had a lot to do with her urges to restrict.
“It’s been almost three years since I felt like I was really battling my eating disorder,” says Beth. “I’m not going to say I’ll never have a problem again but this has been the longest stretch I’ve ever gone.”
Danielle Arigo, co-author of the 2012 study on celiac disease, disordered eating and depression, says we have a long way to go in understanding all of these issues and what drives them. “Our study was just a first step in looking at behaviors and experiences. However, paying attention to the emotional functioning of women with celiac disease is potentially a huge area of opportunity for improving quality of life.”
“Having a chronic illness isn’t easy. Having to manage a special diet isn’t easy. These things take maintenance and management for years down the line,” she says. “Perhaps we should be asking patients: How are you coping?”
The complete names of two women in this article were withheld at their request.
Medical writer Christine Boyd lives in the Baltimore, Maryland, area.