What is Diabulimia?

Diabulimia is an unofficial term that refers to an eating disorder in an individual with diabetes wherein insulin is restricted as a means of controlling one’s weight. Diabulimia is a combination of the words diabetes and bulimia. Diabetes is a disease that affects how the body processes glucose in the blood. Bulimia is an eating disorder characterized by a cycle of bingeing followed by compensatory behaviors to “make up” for the calories consumed.

By: Lucy Wild

Diabulimia is an eating disorder that co-occurs with diabetes, most commonly type 1 diabetes, where a person purposely restricts or omits insulin medication with the goal of losing weight. Type 1 diabetes is an autoimmune disorder in which a person has insufficient or non-existent insulin production. Insulin is a hormone that, among other things, drives glucose (the byproduct of carbohydrates) into cells where it can be used as the body’s preferred energy source. Omitting insulin treatment prevents this uptake of glucose, resulting in its removal from the body via urine. This manipulation of proper metabolic functioning results in weight loss, but there are many dangerous health consequences, as insulin is a hormone that is necessary for life.

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The name diabulimia is derived from the fact that purposeful insulin omission is considered to be a form of purging, which is characteristic of Bulimia Nervosa. However, it is also referred to as ED-DMT1, Eating Disorder-Diabetes Mellitus Type 1, by medical professionals because it is not only bulimia that can be co-occurring. Anorexia Nervosa, Binge Eating Disorder, and additional OSFED diagnoses are also experienced by this population. 

Diabetes is a chronic condition for which there is no cure, but there are successful treatments for managing this condition. However, it is within the nature of both the condition and the treatment that puts some at an increased risk for developing a co-occurring eating disorder. Risk factors include:

  • Age of onset: The onset of type 1 diabetes is around the age of 10-16, which is also the age when individuals are at an increased risk of developing an eating disorder. 

  • Weight shifts: Prior to diagnosis, individuals tend to experience a period of weight loss, followed by a period of weight gain with initiation of insulin treatment, resulting in the misleading perception that insulin causes weight gain. 

  • Focus on numbers: There is an intense focus on numbers (insulin, carbohydrate counting, blood glucose, and A1C) and control when it comes to monitoring eating and blood glucose levels. These behaviors feed into perfectionistic tendencies and, coupled with the focus on numbers related to food intake, put some individuals at high risk for developing an eating disorder. 

  • Loss of hunger cues: The metabolic shifts and insulin treatment lead to a loss of hunger cues, a known risk factor for eating disorders.

  • Social stigma: There is an element of social stigma with this condition that can also lead to disordered eating behaviors.

Individuals with diabulimia are at a high risk for experiencing serious health complications. While the human body is resilient and many with diabulimia manage to function with elevated blood glucose levels in the short-term, the consequences associated with insulin omission can be lifelong and severe. Short-term consequences are:

  • Severe dehydration

  • Electrolyte imbalance

  • Diabetic Ketoacidosis (DKA) - a condition when, without insulin, ketones build up and acidify the bloodstream causing damage to organs, blood vessels, and in severe cases coma and even death.

Long-term consequences include:

  • Retinopathy

  • Peripheral neuropathy

  • Kidney, liver, and heart disease

  • Life-threatening consequences: coma, stroke, death

Diabulimia can onset at any time during the diabetes diagnosis. While some warning signs are similar to other eating disorder behaviors such as fear of weight gain, anxiety about body image, and preoccupation with food, there are some important ones that are specific to diabulimia. While this is a non-exhaustive list, here some signs to look for:

  • Increased neglect and secrecy of diabetes management and avoiding diabetes-related appointments

  • Fear of low blood sugar and increased anxiety surrounding insulin use and weight gain

  • Restricting certain foods or food groups to lower insulin dosages

  • Withdrawal from friends/family activities and the desire to eat meals alone

  • Depression and/or anxiety

  • A1c of 9.0 or higher on a continuous basis

  • Unexplained weight loss

  • Constant bouts of nausea/vomiting

  • Persistent thirst and frequent urination

  • Multiple DKA or near DKA episodes

  • Deteriorating or blurry vision

Due to the serious, life-threatening consequences of diabulimia, it is of the utmost importance to seek treatment as early as possible. Treatment should include the help of a comprehensive team of eating disorder treatment professionals, no matter the level of care the individual is assessed for. The Diabulimia Hotline is a great resource for further information and support.

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This post was written by BALANCE Dietetic Intern, Lucy Wild.

Lucy Wild is a Dietetic Intern at New York University, where she is also pursuing a Masters of Science in Clinical Nutrition. Lucy received her undergraduate degree from Goucher College where she studied Dance and Environmental studies. Prior to working in nutrition, Lucy has a background in the performing arts working as a dancer and performer. Life as a performer drove her to cultivate a nourishing lifestyle to support her for long hours of dancing and hustling around NYC. She is passionate about food and the joy and community that come with it. Through working as a Registered Dietitian, Lucy hopes to support others in finding joy, pleasure, and gentle nutrition through food and lifestyle.

Resources

Diabulimia. National Eating Disorders Association. https://www.nationaleatingdisorders.org/diabulimia-5. Published February 21, 2018. Accessed November 20, 2020. 

Margherita Mascolo, MD, CEDS-S. Diabulimia. Lecture presented at: Alsana - An Eating Recovery Community. Accessed November 20, 2020.

Diabulimia Helpline. http://www.diabulimiahelpline.org/. Accessed November 20, 2020.

Eating DisordersMegan Madsendiabetes