“Diabulimia” is a little known but dangerous practice in which type 1 diabetes patients, mostly women, withhold insulin in order to lose weight.

The American College of Endocrinology (ACE) has produced a short instructional video about diabulimia with the message that the disorder can be overcome.

Although the term diabulimia is relatively new, the disorder is not, Jeffrey R. Garber, MD, a past president of the American Association of Clinical Endocrinologists (AACE), told MedPage Today.

He first encountered the disorder years ago, when a group of patients with diabetes seemed to be experiencing diabetic complications, such as gastropathy and autonomic neuropathy, that were much too early for the course of their disease.

“These complications were typically seen in patients who had the disease for 10 to 20 years. But these women had it for less than 10 years,” said Garber, who is at Harvard Medical School in Boston.

What all these women with type 1 diabetes had in common was an eating disorder, he said.

One study of 234 women with type 1 diabetes found that 30% reported restricting insulin at some point in their lives to lose weight (Diabetes Care 2008; 31: 415–419).

After following the women for 11 years, the researchers found that those who restricted insulin had increased rates of diabetes complications, shortened lifespan, and increased mortality risk.

Factors that were associated with insulin restriction included greater eating disorder symptoms, diabetes-specific distress, overall psychological symptoms, and fear of hypoglycemia at baseline.

The ACE video features Kathryn Ackerman, MD, MPH, from Children’s Hospital Boston; fitness trainer Tarin Jackson, who has type 1 diabetes but never suffered from diabulimia; and diabulimia survivor Maryjeanne Hunt, author of a new book, Eating to Lose: Healing from a Life of Diabulimia.

In the video, Hunt said that the heightened attention to food associated with managing type 1 diabetes is a risk factor for diabulimia. In addition, insulin promotes weight gain.

The more one has control over blood glucose sugar, the less progressive their weight gain, Garber said. But patients often overcompensate. “It’s a trap for weight gain,” he said. “If you’re prone to low sugar, the extra insulin puts on even more weight. But these women realize that if they withhold or reduce their insulin, they will excrete the sugar and keep their weight down.”

Garber said the one question that healthcare providers can ask young women with type 1 diabetes is: do you ever take less insulin than you need?

Possible signs of diabulimia include:

  Elevated hemoglobin A1c (HbA1c) levels
  Blood sugar records that do not match HbA1c results
  Unexplained weight loss or weight gain
  Discomfort with eating or taking insulin in front of others
  Preoccupation with body image, weight, or food intake

In the video on diabulimia, Hunt said that her perfectionism with meal plans gradually encroached into her body image as she entered adolescence.

Both she and Jackson encouraged an active lifestyle as a guard against diabulimia. In fact, that has been an overwhelming message here at the AACE meeting: exercise and healthy eating, along with a commitment from physicians to help patients stay motivated.

“Exercise is the $10 billion drug that no one prescribes,” said one AACE attendee.

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By Chris Kaiser, Cardiology Editor, MedPage Today