In a sobering study of 341 girls and women with type 1 diabetes, researchers found that nearly 30 percent skipped or reduced necessary insulin injections to lose weight. Those who develop this type of diabetes-related eating disorder increase their risk of eye disease, kidney disease and nerve damage, and triple their risk of death.
An 11-year follow-up with a cohort of 234 of those same subjects found that girls and women with type 1 diabetes who restricted their insulin intake died at an average age of 45 years old. Those who did not restrict had an average age of death of 58, reported the 2008 study.
These are disturbing findings, and on the front lines of eating disorders treatment, experts are responding. In September, the Waltham, Massachusetts treatment center Walden Behavioral Care launched its Type 1 Diabetes Eating Disorders Program, which treats males and females age 12 and above.
Although “diabulimia” is the term used most frequently in the media to describe this subset of eating disorders, Walden President and CEO Stuart Koman notes that it’s a misleading term because this disorder is not a form of bulimia. He prefers the medical term Eating Disorder-Diabetes Mellitus Type 1. It’s a mouthful, for sure, so we’ll just call it ED-DMT1.
Although ED-DMT1 does not include symptoms of anorexia or bulimia, as with all eating disorders, its symptoms can cross categories, or be serious without meeting the criteria for a full-blown disorder. So ED-DMT1 patients may exhibit symptoms of anorexia and bulimia as well. Those who do struggle with ED-DMT1 “are typically worried about body image and have a high rate of depression and anxiety,” notes Dr. Koman.
As Marcia and I write in our book, a team treatment approach of surrounding the patient with a tightly-knit group of professional caregivers is the most effective approach. Dr. Koman and Walden adhere to a multi-disciplinary team approach and design treatment for the individual patient offering care ranging from in-patient, residential, partial hospitalization and intensive outpatient. Most patients who enter the program are evaluated at Joslin Diabetes Center in Boston. A Joslin physican oversees the patient’s insulin management, which in turn guides the course of Walden’s treatment.
Describing Walden’s care and best practice standards in ED-DMT1 care in general (though acknowledging that research in the area is scant), Dr. Koman says the team should include an endocrinologist, a diabetes educator, a nutritionist with training in the treatment of eating disorders and diabetes patients, a psychiatrist for psychopharmacologic evaluation and treatment and a mental health professional to provide individual treatment.
Monthly medical and nutritionist appointments may be necessary, and lab tests and weight checks should take place during each medical appointment. In keeping with the tenets of team treatment, results should be shared with mental health team members. and Dr. Koman notes, “Open, frequent communication between team members is critical.”
If you suspect a family member or loved one is engaging in ED-DMT1 behavior, it’s important to make sure she or he sees a medical professional with expertise in eating disorders. Left untreated, ED-DMT1 can result in diabetic ketoacidosis (DKA), which can be fatal. Symptoms include vomiting, dehydration, difficulty breathing and confusion. Patients may also become comatose. Longer term risks include the aforementioned.
Vigilance on the part of parents, family members or close friends is important because, as Dr. Koman notes, endocrinologist vary in their awareness and sensitivity to the possibility of ED-DMT1, ranging from those who might not “recognize psychiatric disorders leading to these conditions” to exceptional practitioners “who recognize that eating disorders are prevalent among diabetes patients,” and can spot an emerging disorder. Don't assume you have the latter type.