Some people with Type 1 diabetes have turned to insulin restriction as a form of weight loss. According to the American Diabetes Association, 30-40 percent of young females with juvenile diabetes have this eating disorder, called diabulimia.
Maryjeanne Hunt was 10 years old when she developed Type 1 diabetes and 14 when she stumbled upon the practice of skipping insulin to lose weight. “At one point my sugar went so high that I lost weight,” says Hunt, author of Eating to Lose: Healing from a Life of Diabulimia (2011, Demos Health). Hunt struggled with diabulimia for 22 years. “I was secretly gratified with the sudden five-pound weight loss, even though physically I felt absolutely horrible,” she says.
In people with Type 1 diabetes, also called juvenile diabetes or insulin-dependent diabetes, the body’s immune system attacks beta cells in the pancreas, preventing the production of insulin. Diabulimia is a condition where patients with Type 1 diabetes use insulin restriction as a form of quick weight loss (without insulin, calories are omitted through the loss of glucose in the urine). This “purging” of the sugar from the body, according to the Juvenile Diabetes Research Foundation, can be compared to the purging done by bulimics, who vomit or use laxatives to rid their bodies of the food they consume—hence the term “diabulimia.”
The American Diabetes Association indicates that 30-40 percent of female teenagers and young female adults with diabetes alter or skip insulin to control their weight. “If you have diabetes, then the risk of developing an eating disorder is about twice as likely than if you didn’t,” says Ronald Steingard, M.D., of Walden Behavioral Care in Waltham, MA and research consultant for Harris Center for Eating Disorders at Harvard University.
The standard red flags that apply to most eating disorders also apply to diabulimia, including: food and/or calorie obsession, compulsive or punitive drive to exercise for the sole purpose of calorie expenditure, obsession with food labels or a sudden excessive interest in “nutrition” values, sudden change in eating habits, and perpetual weight loss. In addition, red flags that are specific to diabulimia include: uncontrolled blood sugars, increased urination, fruity breath, weight loss (often despite increased food intake), frequent ketones in the blood or urine, excessive thirst, and diabetic ketoacidosis (DKA). “My most dramatic symptom was a 20-plus pound weight loss over roughly a four-month period,” Hunt recalls.
Like any eating disorder, diabulimia can have serious consequences. Short-term effects include severe dehydration and muscle loss. Long-term consequences include blindness, nerve damage, foot amputations, kidney damage, heart damage, and a type of liver disease called steatohepatitis, even death. “With Type 1 diabetes, it’s absolutely necessary to take insulin to grow and develop and function,” says Robert Rapaport, M.D., director of the division of pediatric endocrinology and diabetes at the Mount Sinai School of Medicine in the Bronx. The longer an individual goes without insulin, the risk of developing any of the above rises exponentially.
An Intersection of Two Disorders
Diabulimia is not recognized in the medical community as an official diagnosis. “Diabulimia is really not a separate disorder, but the intersection of two disorders,” Dr. Steingard says. “The value of the term ‘diabulimia’ is to raise awareness—and perhaps research into—the intersection. An eating disorder is a risk in Type 1 diabetes, and when the two disorders co-occur, the risk to the patient goes up,” he says.
Despite recent media attention, diabulimia is hardly a foreign concept. “The term [diabulimia] is not a new concept. Everyone who has done pediatric diabetes care has known about it for the past 20 years,” Dr. Rapaport says. “As part of routine care, a team of diabetes specialists, physicians, nurses, educators, and especially mental health care professionals and nutritionists would be paying attention to eating habits. Calling attention that eating disorders occur in youth with diabetes is a good service alert for health care providers. Inventing a new term is not useful.”
Parents of teenagers with diabulimia should implement a treatment team including: a primary care physician/nurse practitioner, endocrinologist (either primary or consultant), nutritionist, and educator. “It is critical that there is a team in place to focus on the management of the diabetes regardless of the status of the anorexia,” says Dr. Steingard. “I think that successful intervention requires full knowledge of both disorders,” he says.
Dr. Rapaport stresses that, “People should routinely discuss adherence to the management regimen—which includes nutrition, exercise, and insulin administration—with their diabetes healthcare team. If and when eating disorders are identified, referrals to appropriate specialists should occur promptly.”
Hunt, now a licensed independent wellness coach, never received treatment as a teenager. “I never joined a support group or turned to friends or family,” she says. “After 22 years, I finally told the truth to my doctor. I had to get really honest with myself and own accountability for the choices that led to the illness.”
Tips for Parents
Join a support group. “Be sure you build a network of support for you, the parent,” Hunt says.
Seek support from professionals. “You need to have a team [that is] in tune [with one another] to identify if an individual skips insulin or has atypical or disordered eating habits,” Rapaport says. Some professionals suggest parents monitor the patient’s blood sugar, have mandatory weigh-ins, or require a food journal, though Hunt disagrees: “I believe that, at best, approaching an eating disorder in this way will only address the behavior of the illness, not the illness itself,” she says.
“If you are able to find a place that says they have expertise in both disorders, ask about their experience and qualifications,” Dr. Steingard advises. “Don’t be shy. If you are working with two different teams of experts, you need to push for coordination between the two teams."
24-hour hotline: 425-985-3635
American Diabetes Association
Behavioral Diabetes Institute
The Diabetes Resource
Eating Disorders Coalition
Eating for Life Alliance
Juvenile Diabetes Research Foundation
JDRF’s Social Community for Young People with Type 1 Diabetes
Proud 2B Me
The Renfrew Center for Eating Disorders
(with locations in New York, Connecticut, and New Jersey)