What is Diabulimia?

Diabulimia is not a medical term, but a term developed by the media to refer to the specific process of insulin omission by a type one diabetic. Additionally, the dual diagnosis of an eating disorder, which may include aspects of Anorexia, Bulimia, Binge Eating Disorder or OSFED, and Type 1 Diabetes can be referred to by treatment providers as ED-DMT1.

Individuals with Type I Diabetes are dependent on insulin injections because their bodies do not make insulin, a hormone that allows the body to access energy from food in the form of glucose. Persons with diabulimia do not take their insulin or significant portions of their insulin in an attempt to control their weight.
Diabulimia
The name “diabulimia,” which combines “diabetes” and “bulimia,” is a bit of a misnomer because it implies that individuals with diabetes who struggle with an eating disorder specifically have bulimia, an eating disorder in which a person uses behaviors such as vomiting, use of laxatives, exercise or other purging behaviors to prevent weight gain. Those with diabulimia try to “purge” or eliminate calories by excreting excess sugar in their urine. However, people suffering from diabulimia may exhibit any number of eating disorder behaviors or they may only manipulate their insulin and otherwise have normal eating behaviors. Some people with type one diabetes continue taking their insulin but still experience symptoms of eating disorders like anorexia, bulimia and binge eating disorder, thus meeting the criteria for ED-DMT1.

Symptoms of disordered eating are higher among individuals with Type I Diabetes than they are in the general population. Specifically:

  • Women with Type I Diabetes develop eating disorders more than twice as often as women who do not have diabetes.
  • Between 45 and 80 percent of those with Type I Diabetes report binge eating.
  • Between 30 and 35 percent of women with Type I Diabetes say they attempt to lose weight by not taking their insulin as prescribed.

It is not known exactly why individuals with diabetes are more likely to develop an eating disorder, but there are several contributing factors believed to play a role. One factor is the increased emphasis placed on food and dietary restraint in traditional diabetes management. Restriction of carbohydrates can be a trigger for binge eating. Perfectionism and control are encouraged in diabetes management. Individuals diagnosed with a chronic medical condition commonly feel distressed and alienated which may make them more vulnerable to bingeing and or wanting to diet to fit in. In addition, there is often weight gain associated with the start of insulin treatment, as an early symptom of diabetes is often weight loss. Lastly, insulin dosing is unpleasant, at least initially.

Symptoms of ED-DMT1 and Diabulimia

The most obvious clinical sign of diabulimia is weight loss. Another major sign is poor blood-glucose control, especially if the person previously had good control. Other symptoms can include excessive thirst, frequent urination, increased hunger, growth failure in adolescents, and severe recurrent episodes of hypoglycemia. The individual may display signs of disordered eating such as dieting, binge eating, rituals around food, refusal to eat around others, and frequent talking about weight and body image. These patients may resist going to the endocrinologist for fear their underdosing of insulin will get noticed, especially if there is a discrepancy between their home meter and their HbA1c test.

Medical Complications of ED-DMT1 and Diabulimia

Individuals with ED-DMT1 and diabulimia can develop severe and life-threatening medical complications. For instance:

  • People with diabulimia were 3.2 times more likely to die over an 11-year study, and to die on average 13 years younger than those who didn’t restrict insulin.
  • The most serious short-term complication is diabetic ketoacidosis. This is a medical emergency and patients suffering ketoacidosis must be hospitalized immediately. Otherwise, it can lead to coma and even death.
  • Longer-term complications include nerve damage, retinopathy (damage to the retina) and loss of vision, heart disease, and kidney dysfunction and failure. Some of these complications are not reversible, even with treatment.

 

Treatment for ED-DMT1 and Diabulimia

Those being treated for diabetes alongside an eating disorder require a coordinated approach by a team of health care providers experienced in treating both conditions. Included on the team should be a nurse, an endocrinologist, an eating disorder physician, a dietitian, a psychotherapist, and a diabetes educator. Instead of treating the two conditions separately, the team must collaborate on treatment plans. Treatment requires careful medical supervision, including blood glucose monitoring, management of side effects due to reintroduction of insulin and treatment of diabetes complications. These patients are more often found to need inpatient hospitalization due to medical instability.

Intuitive eating, CBT, DBT, & ACT are treatment approaches that have been successful in treatment of patients with both diabetes and eating disorders. For diabetes treatment the focus should be on a more flexible meal plan that minimizes the amount of time spent on diabetes management. Unfortunately there is a shortage of treatment programs for ED-DMT1 and diabulimia.

If you or someone you love shows signs of an eating disorder, with or without diabetes, it is important to seek professional help.

 

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Written by Dr. Lauren Muhlheim – 2016

Resources:

Two organizations, Diabulimia Helpline (US Based) and Diabetics with Eating Disorders (UK Based), provide support & education on Diabulimia.

Diabulimia Helpline has a list of US treatment centers that have specialized treatment programs for patients with both Diabetes and Eating Disorders.

Diabulimia Helpline endorses this video as an excellent overview of Diabulimia for patients, their family and professionals.

References:

Diabulimia/ED-DTM1 Terminology

T1D Intel: Learning about the dual diagnosis of an eating disorder and type 1 diabetes

Diabulimia: A Dangerous Duet

Understanding Diabulimia – Know the Signs and Symptoms to Better Counsel Female Patients

Diabulimia – What is it Exactly?