A recent news story in a Philadelphia newspaper brought readers’ attention to a common but sometimes unrecognized problem in teenaged girls with diabetes: diabulimia. The article discusses a young woman with type 1 diabetes (T1D) who “realized that by not taking my insulin, I could eat anything I wanted and lose weight.” This eating disorder, a combination of diabetes plus bulimia, is common in young women with T1D.
Two scientific studies summarize the situation:
(1) In a study from 1997, young women with T1D were evaluated over 4-5 years. 26 (29 percent) “had highly or moderately disordered eating behavior, which persisted in 16 (18 percent) and improved in 10 (11 percent). Of the 65 women with normal eating behavior at base line (71 percent), 14 (15 percent) had disordered eating at follow-up. Omission or underdosing of insulin to lose weight was reported by 12 of 88 young women (14 percent) at base line and 30 (34 percent) at follow-up.”
(2) In 2002, a study of 143 teenagers with T1D found that “unhealthy weight control practices were reported by 37.9% of the females and by 15.9% of the males. Among the females, 10.3% reported skipping insulin and 7.4% reported taking less insulin to control their weight. Only one male reported doing either of these behaviors.”
The earliest publications on the syndrome itself are from the mid-1980’s. Interestingly, in none of these publications is there mention of the portmanteau word “diabulimia.” The Philadelphia newspaper story quotes a Boston psychologist, Dr. Ann Goebel-Fabbri, who states that the term is a media invention, but doesn’t state when or where it originated. A website dedicated to the subject, Diabulimia Helpline, also says the word is a media invention. A discussion of diabulimia at the JDRF website misleadingly states it’s a new type of eating disorder – which it most definitely is not.
I decided to see if I could identify the earliest reference to the use of the word diabulimia. Searching PubMed found only five articles mentioning it, the oldest only dating back to 2007. Wikipedia has an article on the subject, but doesn’t give the history of the term, and none of the websites dedicated to diabulimia mention who coined the term and when.
I found a mention in 1999, when Dr. Stuart Brink (a pediatric endocrinologist) said that “omitting insulin can be a version of bulimia. We actually coined the term diabulimia. It causes high blood sugars which then causes huge amounts of glucose losses in the urine - thus calorie loss and weight loss. It’s a very dangerous way to lose weight since the body burns muscle and fat. When carried to extremes, usually in very depressed youngsters, it can lead to ketoacidosis.” Another article, this time from 1998, mentions that “Brink and former associate Harold Starkman, MD have even coined a term for this condition which they have encountered so frequently ‘diabulimia.’”
For the moment, then, 1998 is the earliest mention of “diabulimia” that I can find. And it was endocrinologists, not media specialists, who coined the neologism. But the problem of an eating disorder where deliberate insulin omission leads to subsequent weight loss has been around for a long time – and remains a serious but sometimes unrecognized issue for teenaged girls with diabetes.
Physician who is living with diabetes; editor of www.D-is-for-Diabetes.com