I have to admit that, when a colleague on the Academy for Eating Disorder Social Media Committee that I was co-chairing proposed “diabulimia” as an idea for a tweetchat, I was not particularly excited. As an eating disorder specialist in outpatient private practice, I have not professionally encountered clients with diabetes and eating disorders.
Since we could not easily identify any experts on the topic who also tweeted, the idea languished until the International Association of Eating Disorder Professionals scheduled an event on the topic in my area. John Dolores , JD, PhD, a licensed clinical psychologist and Executive Director of Center for Hope of the Sierras, was the guest speaker.
Prior to attending his talk, I had the luck at the FEAST conference to sit next to Dawn Lee-Akers, CFO at Diabulimia Helpline. Together Dawn and Dr. Dolores educated me on the severity of ED-DTM1 (popularly referred to as “diabulimia”) and the need to draw more professional and public knowledge about this issue (and both agreed to be involved in the chat).
As a result, I was really excited to be involved in helping prepare for the AED twitter chat on the topic this week and to do my part to bring attention to the issue. It was a great and informative chat and I hope you’ll read the entire transcript available here.
Some highlights of what I have learned:
- Diabulimia is a media term; many providers prefer ED-DMT1. It is most commonly the coexistence of Type I diabetes and an eating disorder with manipulation of insulin to lose weight. In this case, the insulin manipulation is considered an inappropriate compensatory behavior (hence the use of the term diabulimia). The individual may meet criteria for Bulimia Nervosa or OSFED. It is also possible to have Type II diabetes and an eating disorder, which may be included in diabulimia if insulin manipulation is involved. Additionally, some people can have diabetes and an eating disorder that are totally unrelated.
- Women with Type I diabetes are 2.4 times more likely to develop an eating disorder than their non-diabetic peers. Statistics vary quite significantly with a reported 45-80% of Type I diabetics reporting binge eating. Multiple studies show 30%-35% of women with Type I diabetes report restricting or omitting insulin in order to lose weight.
- Higher rates of eating disorders among people with diabetes are not surprising due to the way diabetes has traditionally been treated. The traditional diabetes ‘diet’ focuses on low carbs and high protein, which encourages restriction, which in turn can lead to binge eating. Diabetes management includes a lot of focus on numbers and on control which may feed perfectionism. Patients with diabetes often lose weight pre-diagnosis, and gain weight when they start insulin, so come to associate insulin with weight increase. They quickly learn that they can manipulate their weight by under dosing with insulin.
- The effects of compensation by insulin are even more devastating than other forms of dietary compensation. Patients with diabulimia are at risk for serious medical consequences. The most dangerous short-term consequence is diabetic ketoacidosis, which requires immediate hospitalization. Longer-term consequences include peripheral and autonomic neuropathy, retinopathy, cardiovascular disease, and even renal failure. Some of the consequences are irreversible.
- Diabulimia requires a specific and sensitive treatment approach from a coordinated team of professionals with expertise in diabetes and eating disorders. The team should include nursing, endocrinologist, dietitian, therapist, and diabetes educator. It is critical that the team use a consolidated approach and not treat the diabetes and eating disorder separately.
- Intuitive eating, CBT, DBT, & ACT are successful in the treatment for comorbid diabetes and eating disorders. The treatment of diabulima requires medical oversight, including regular monitoring of blood glucose, management of certain side effects of insulin re-introduction, and treatment of new or worsening diabetes complications. Eating disorder patients with comorbid diabetes are more likely to be medically unstable and need inpatient treatment.
With diabetes on the rise and numerous prevention efforts aimed at preventing obesity, I was left wondering: where are the prevention efforts for the even deadlier combination of diabetes and eating disorders? For such efforts, eating disorder professionals and organizations must work together with diabetes professionals and organizations. We invited several diabetes organizations to join our chat, and fortunately, a few did. We must continue to raise attention to this problem and reach out to others outside the eating disorder field.
- Two non-profits, Diabulimia Helpline (in the US) and Diabetics with Eating Disorders (in the UK), are tremendous resources for support & education on Diabulimia.
- The Diabetes Eating Problem Survey (DEPS-R) can be used by providers to assess whether patients with diabetes may have an eating disorder.
- Diabulimia Helpline maintains a list of US treatment centers that have specialized programs to treat comorbid Diabetes and Eating Disorders.
- Diabulimia Helpline recommends this video as the best overview on Diabulimia for patients, family and professionals.
- Dr. Dolores recommends two books:
- For professionals, DIABULIMIA: Diabetes & Eating Disorders; What It Is and How to Treat It: A Guide for Individuals and Families; A Tool for Health Personnel, by Grace Shih
- For consumers, Diabulimia: Towards Understanding, Recognition, and Healing by Aarti Sharma