Shedding light on an eating disorder unique to people with type 1 diabetes (T1D)
Eating disorders are relatively common in people with T1D. In fact, nearly 1 in 5 children with T1D, and 1 in 4 females, show signs of disturbed eating behaviour.1
Diabulimia is an eating disorder that primarily affects young women with T1D. It is characterized by deliberately withholding, or restricting, insulin in order to lose weight, explains Dr. Michael Vallis at the Behavior Change Institute, Nova Scotia Health Authority and Dalhousie University in Halifax.
Although restricting insulin does cause weight loss, anyone living with T1D knows that it also causes blood sugar levels to skyrocket. Over time, this takes a toll on health that can have life-threatening consequences.
Diabulimia can accelerate T1D-related complications in young people, including blindness, kidney failure and limb amputation – conditions that are typically seen in much older patients.
One of the most serious complications is diabetic ketoacidosis (DKA), when a lack of insulin causes the body to burn fat in order to fuel itself, creating toxicity in the body, and potentially resulting in coma or even death.
While there are no hard statistics on diabulimia, says Dr. Vallis, it is estimated to occur in up to 6 to 7% of people with T1D. Emilee Wilson is one of those people. Diagnosed with T1D at age 1, the 24-year-old ballet instructor says today she’s happy, healthy and in recovery from diabulimia.
Emilee’s battle with eating disorders began at age 11 when she developed anorexia. By the time she was 16, her pattern changed from severe food restriction to binge eating and purging. She discovered diabulimia “by accident” when, after skipping her insulin, she noticed she had lost weight.
“I began to play around with my insulin and found I was able to manipulate my weight. I stopped checking my blood sugar levels because I knew they would be high. I just ate whatever I wanted,” she says.
Eventually, Emilee began to develop symptoms suggesting poor blood sugar control was taking its toll. She suffered ‘unbearable fatigue’ and a noticeable decline in her ability to focus.
“I could not keep up with even basic daily tasks. I could barely function at all and had to leave university and quit dancing, which is my passion,” she says.
Emilee attended conventional eating disorder treatment programs, including an intensive inpatient program, but these did not lead to lasting recovery.
Dr. Vallis says this is not surprising. Traditional eating disorder programs aren’t geared towards the unique needs of diabulimia patients, so treatment failure rates are high.
Ultimately, Emilee found success in leading her own recovery. For her, this included a combination of strategies she learned from various treatment programs as well as yoga/mindfulness, and artistic expression.
“I was facing the choice of dying or beating it, because I could no longer bear to live with an active eating disorder. It was a slow process, with many slips along the way, but I just kept aiming to get back on track as soon as I could,” says Emilee.
Diabulimia is still a relatively unknown condition, so raising awareness about it (among the medical community and the public) is critical to prevention and better management. The key: developing targeted treatment programs focusing on optimal diabetes management and treating the underlying eating disorder, says Dr. Vallis.
If you suspect you or someone you know is suffering from diabulimia, you should contact your diabetes healthcare team and/or family physician to discuss referral options and receive support, says Dr. Vallis.
1. Diabetes Care 36:3382–3387, 2013
Know the signs of diabulimia
According to the US National Eating Disorders Association, possible signs of diabulimia include:
- Hemoglobin A1C level of 9.0 or higher on a continuous basis.
- Unexplained weight loss.
- Persistent thirst/frequent urination.
- Preoccupation with body image.
- Blood sugar records that do not match Hemoglobin A1C results.
- Depression, mood swings and/or fatigue.
- Secrecy about blood sugars, shots and or eating.
- Repeated bladder and yeast infections.
- Low sodium/potassium.
- Increased appetite especially in sugary foods.
- Cancelled doctors' appointments.