“Diabulimia,” the pediatric endocrinologist told me. “She is missing her doses on purpose.”
“Diabulimia?” I asked. I had never heard of this eating disorder before.
As a new diabetes educator, I was working in in a pediatric diabetes clinic when the pediatric endocrinologist looked at our patient’s insulin pump download. There was a distinct lack of data. The patient had not checked their glucose for the past two weeks, nor given any boluses. Her hemoglobin A1c was over 14% — as high as the portable machine would check. He then looked at the weight chart. She had lost 10 pounds over the past 12 weeks.
What is diabulimia?
Diabulimia, also known as ED-DMT1, is an eating disorder specific to those with type 1 diabetes. It is “a life-threatening combination and the unhealthy practice of withholding insulin to manipulate or lose weight. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors or they may only manipulate their insulin and otherwise have normal eating patterns.”
The warning signs of diabulimia are very similar to the warning signs of newly diagnosed diabetes. A major symptom of diabetes is prolonged hyperglycemia, or prolonged high blood glucose levels. When blood glucose levels are high for long periods of time, the “poly-s” occur:
- Polyuria, or increased urination
- Polydipsia, or increased thirst
- Polyphagia, or increased hunger
Other symptoms include:
- An elevated A1c
- A1c inconsistent with meter readings
- Frequent bladder and/or yeast infections
- Irregular or lack of menstruation
- Rapid weight loss, even without limitations in eating patterns
- Physical exhaustion
- Mood changes
- Decreased concentration
- Repeated hospital admissions for diabetic ketoacidosis (DKA)
Why is diabulimia dangerous?
All eating disorders are dangerous. Combining type 1 diabetes with an existing eating disorder can rapidly make that eating disorder lethal. According to Marilyn Ritholz, PhD, “If you have diabetes and are not taking insulin, your organs will become saturated in glucose. You can put your body into a state of DKA, and you can experience the long-term complications of diabetes such as retinopathy, nephropathy and neuropathy. If left untreated, DKA can lead to death.”
Treatment of diabulimia requires a multidisciplinary approach. The ideal team includes an endocrinologist, a dietitian with experience in diabetes and eating disorders, and a mental health professional who specializes in eating disorders.
It is important to remember that someone suffering from diabulimia does not need to achieve perfection. Working towards perfection can worsen symptoms, causing setbacks, burnout, and “all-or-nothing” thinking. Setting small goals, such as checking glucose twice daily as opposed to not at all, is a great place to start.
Should treatment require a higher level of care, selecting a location with experience in diabulimia is essential. According to the National Eating Disorders Association, or NEDA, “Patients and healthcare professionals can ask to review insulin reintroduction protocols, diabetes management, and staff training in diabetes to determine a center’s true level of expertise.”
Though diabetes educators, endocrinologists, people with diabetes, and caring family members and friends realize that diabulimia is a real issue, the DSM-5 currently does not recognize diabulimia as a specific medical diagnosis.
According to NEDA, the DSM-5 “classifies insulin omission as a purging behavior, therefore it may be coded as bulimia nervosa if the person is binging then restricting insulin. It may be diagnosed as a purging disorder if the person is eating normally and restricting insulin or anorexia nervosa if the person is severely restricting both food and insulin.”
This does not make it any less real to those suffering from this condition.
- Diabulimia. (n.d.). National Eating Disorder Association. Retrieved February 24, 2020, from https://www.nationaleatingdisorders.org/diabulimia-5
- What is diabulimia? (n.d.). Beyond Type 1. Retrieved February 24, 2020, from https://beyondtype1.org/the-truth-about-diabulimia/