With commentary by AADE presenter Lorraine Platka-Bird, PhD, RD, a diabetes educator
An eating disorder unique to people with type 1 diabetes called diabulimia, has become more prevalent in recent years and been gaining attention among experts, according to Lorraine Platka-Bird, PhD, RD, a diabetes educator who will be discussing the condition at the American Association of Diabetes Educators (AADE) Annual Meeting in New Orleans this week.
But it’s an incredibly dangerous way to lose weight. Not only can having high blood glucose levels make you feel sick on a day to day basis, but if sugar levels get too high, it can lead to diabetic ketoacidosis (DKA), when your body produces high levels of toxic ketones that can lead to diabetic coma, hospitalization, and potentially death.
Sufferers of diabulimia also put themselves at a greatly increased risk for all of the long-term complications of poorly treated diabetes. “The complications show up much earlier and much more severely in people with diabulimia,” says Platka-Bird, director of nutrition at the Center for Hope of the Sierras, an eating disorders treatment center in Reno. She has seen patients in their early 20s that already have neuropathy, impaired kidney function, and blindness.
It’s not uncommon for those with type 1 diabetes to restrict insulin for weight management to some degree, but for some people, it becomes a full-fledged eating disorder. “Diabulimia has definitely increased more over the past several years,” says Platka-Bird, though the research is inconsistent on just how common it is.
Sufferers vary in how they restrict their insulin. Some take long acting insulin but restrict their short-acting bolus insulin. Others do it in the reverse. “How they choose to restrict their insulin is tremendously variable,” says Platka-Bird. “They can become very good at determining how much insulin they need to keep themselves out of DKA,” she says. But many sufferers have repeated hospitalizations due to diabetic ketoacidosis (DKA).
Type 1 diabetics have some inherent risk factors for eating disorders. “All the things we do to treat diabetes are risk factors for developing an eating disorder,” she says. Diabetics have to read food labels, count their calories, avoid “bad” foods, and there’s a big emphasis on maintaining an appropriate weight. All the preoccupation with foods and dieting can prime people for an eating disorder. In addition, weight loss is a common symptom of type 1 diabetes, and some patients may not want to give that up. On top of that, insulin treatment often leads to increased hunger and weight gain, potentially fueling a poor body image.
Though it’s not listed in the bible of psychiatric disorders, the DSM-5, diabulimia is being recognized by experts, who advocate treating it as they do other eating disorders. But it comes with its own set of unique challenges.
The first challenge is diagnosis. Many sufferers go undiagnosed for years because they simply fool their endocrinologist or diabetes educator. Health care providers need to trust the A1c levels, a measure of average blood glucose, and if they don’t match up with what the patient is saying about their use of insulin, that may be an indicator of an eating disorder. In some cases, if the A1c is high and the patient says she’s taking insulin (even if she’s not), the doctor may assume the patient needs more insulin. “It’s not because the prescription is off, it’s that they’re not taking it,” says Platka-Bird.
Signs of an eating disorder in a diabetic include hyperglycemia, elevated A1c despite reported compliance, weight loss despite increased food intake, recurrent DKA, and classic symptoms of diabetes: excessive urination, excessive thirst, excessive hunger.
Patients with diabulimia are treated for an eating disorder with therapies like dialectical behavior therapy and cognitive behavior therapy, as well as education about food. “You have to address the psychology of the eating disorder and the nutritional disorder at the same time,” says Platka-Bird.
Part of the mindset of diabulimics, says Platka-Bird, is they have feel that people don’t understand what it’s like to have diabetes. They also believe it’s a strength to not take insulin and to be able to function at a higher level of glucose than most people can handle.
“We need to educate them and address the issues in a non-shaming way,” says Platka-Bird.