What Is Diabulimia?

ED-DMT1 is an eating disorder where people with diabetes omit their insulin

Diabulimia, often referred to as ED-DMT1, is a very serious condition where a person with type 1 diabetes omits their insulin purposefully to lose weight. Although diabulimia is not a diagnostic term, it is often used to describe this condition.

ED-DMT1 refers to any type of eating disorder comorbid with type 1 diabetes. The formal diagnosis will include receiving an eating disorder diagnosis, such as bulimia or anorexia nervosa. The types of behaviors associated with the eating disorder can help health care practitioners identify, diagnose, and treat the condition.

Eating disorder counseling

KatarzynaBialasiewicz / iStock / Getty Images

What Is Diabulimia?

Diabulimia is found in people with type 1 diabetes who need to take insulin in the form of multiple daily injections or infusion to maintain blood sugar control.

A hyper-focus on blood glucose numbers, label reading, meal planning, and carbohydrate counting, as well as food restrictions and "rules" can increase a person with type 1 diabetes risk of developing an eating disorder.

Audrey Koltun, Registered Dietitian (RD) and Certified Diabetes Care and Education Specialist (CDCES) at Cohen's Children's Medical Center says, "People with diabulimia have some of the same medical presentations, such as high blood sugar, and elevated A1c, as someone that just does not take care of their diabetes and does not have diabulimia."

Because of these commonalities, diabulimia can often be hard to identify and treat. On the other hand, there are certain warning signs that can help family members and practitioners working with people with type 1 diabetes screen for it, understand it, and identify if better.

Type 1 Diabetes and Eating Disorders

Research indicates a higher prevalence of eating disorders among people with type 1 diabetes, as compared to their peers without diabetes. According to the American Diabetes Association, "People with type 1 diabetes are twice as likely to suffer from disordered eating patterns."

Disordered eating behaviors may appear as insulin omission. It is estimated that as many as one-third of women with type 1 diabetes report insulin restriction, with higher levels among those between the age of 15 and 30.

This is dangerous because insulin omission is associated with poorer glycemic control and severe risk for increased morbidity and mortality.

Symptoms

People with type 1 diabetes need insulin, a hormone that has many roles in regulating blood sugar, to live. When a person omits insulin, blood sugars will become elevated and the body will compensate to rid the body of extra sugar by eliminating sugar through the urine; this can result in weight loss.

Without insulin people with type 1 diabetes can develop diabetic ketoacidosis (DKA), a very dangerous and serious condition. Chronically elevated blood sugars can cause both microvascular and macrovascular complications including retinopathy, neuropathy, kidney disease, vascular disease, gastroparesis, and more.

Symptoms of diabulimia may be hard to identify as practitioners may mistake them for inefficient diabetes care or "lack of compliance." It is critical for people caring for those with diabetes to understand the importance of early screening and detection as well as educating and listening with compassion and empathy.

Labeling a person as non-compliant is offensive and insensitive. Omitting insulin is a sign that something is wrong, as many people can struggle with diabetes management.

People with diabetes who are eliminating their insulin can present with an array of symptoms that can be categorized as emotional, behavioral, and physical. Koltun say, "In my clinical career, I have seen this more commonly in girls, but diabulimia can also affect boys."

When someone with diabetes omits insulin regularly, they will experience hyperglycemia or elevated blood sugar. In the short-term high blood sugar may cause:

  • Weight loss
  • Increased urination
  • Excessive hunger
  • Excessive thirst
  • Blurred vision
  • Confusion
  • Fatigue or lethargy
  • Dry hair and skin
  • Hair loss

If hyperglycemia occurs for a long period of time, other signs may include:

  • Hemoglobin A1c of 9.0 or higher on a continuous basis
  • Multiple diabetic ketoacidosis or near-DKA episodes (this is very serious)
  • Low sodium and/or potassium
  • Dehydration
  • Frequent bladder and/or yeast infections
  • Irregular menstruation or lack of menstruation
  • Loss of muscle mass

Some behavioral symptoms may include:

  • Obsession over body weight
  • Excessive use of the scale
  • Reporting false blood glucose readings
  • Depending on the eating disorder type you may also see binging, purging, excessive exercise

Diagnosis

Screening should begin in pre-adolescence and continue through early adulthood, as many disordered eating behaviors begin during the transition to adolescence and may persist for years.

Koltun notes, "If I suspect a person with diabetes has diabulimia, I will make sure that their endocrinologist is aware, as well as my social worker. They will then be referred to a psychologist."

The National Institute for Health and Care Excellence (NICE) clinical guidelines state that "Healthcare professionals dealing with those with type 1 types should maintain a high index of suspicion of eating disorders."

Causes

A person can develop diabulimia anytime after a type 1 diabetes diagnosis. As with other chronic illnesses, there can often be a two-way relationship between psychological and physical symptoms. Some causes may be due to diabetes burnout, wanting to lose weight, body image issues, or puberty.

One research study suggests that those with type 1 diabetes and an eating disorder (or those who deliberately omit insulin for weight control) are likely to have multiple psychiatric morbidities, such as depression and anxiety, that can further complicate treatment.

Types

Diabulima does not have its own diagnostic code. Because it is considered a type of eating disorder, it will likely receive an eating disorder diagnosis.

According to the National Eating Disorders Association, in the "Diagnostic and Statistical Manual of Mental Disorders" (DSM-5), "Insulin omission is classified as a purging behavior, therefore it may be coded as bulimia nervosa if the person is binging then restricting insulin.

"It may also be diagnosed as purging disorder if the person is eating normally and restricting insulin or anorexia nervosa if the person is severely restricting both food and insulin. Diabulimia can also be diagnosed as "other specified feeding and eating disorder (OSFED)."

Treatment

Having diabetes comes with many challenges; daily management requires many self-care behaviors to maintain optimal glucose control. Couple the daily challenges with an eating disorder, and things may seem like they are spiraling out of control.

Many people feel guilt, shame, and other negative emotions that can make this disease exceedingly difficult to treat. The good news is that it is never too late to get help and there are many different types of support groups, professionals, and organizations that are dedicated to working with you and your family.

If you or someone you love is suffering from diabulimia, it's important to delve deeper into the struggles that come with the condition and understand that resolving to lose the idea of being "perfect" will be an important part of treatment. Acceptance and willingness to seek help is another especially important step in coping with this dual diagnosis.

Susan Weiner, RD, CDCES says, "The complex dual diagnosis of an eating disorder and type 1 diabetes requires understanding on the part of clinicians, who may be 'well-meaning', but if we don't listen and observe what's going on, we could be reinforcing eating disorder behaviors.

"Person-centered, non-judgmental language, and active listening skills on the part of the health care professional with be vital in treatment."

A multidisciplinary team is also of the essence. This team should include an endocrinologist, registered dietitian who specializes in diabetes and eating disorders, and a mental health professional.

Koltun tells Verywell Health, "If I am counseling someone and suspect they have diabulimia, I make sure that their endocrinologist and mental health professional know right away. Because this is considered an eating disorder, I also make sure that I provide them with hot-lines and support groups.

Simply reiterating diabetes management and discussing complications of diabetes when omitting insulin is not enough. In fact, doing so may fuel the disorder. Koltun say, "I focus on small goals, motivation, and helping people redirect their focus from an unhealthy weight."

Genna Hymowitz, Ph.D., clinical assistant professor at Stonybrook University, tells Verywell Health about the role of the psychologist when treating diabulimia, "Psychologists can help determine whether individuals with diabetes and symptoms of an eating disorder would benefit from some of the available evidence based psychological intervention.

"They can also help individuals with diabulima learn cognitive and behavioral strategies to help change their relationship with food, weight and shape, and eating and better manage the stressors related to having a chronic illness.

"Additionally, psychologists can help individuals stay on track with some of the health behaviors (like insulin use) that are important in managing diabetes."

Part of counseling should include interventions that teach strategies that can enhance coping skills and manage eating disorder symptoms. "These strategies may include mindfulness and relaxation practices, cognitive strategies, and pleasant activity scheduling," says Hymowitz.

Depending on the severity of the disorder, people with diabulimia may be able to work in an outpatient setting. The National Eating Disorder Association says, "Remaining in an outpatient setting should be contingent upon taking a minimum amount of insulin consistently, being able to eat enough food to maintain weight, and not engaging in degrees of purging that causes dangerous electrolyte imbalance."

For those people with more severe cases, hospitalization may be required until they are both mentally and physically stable. Another option could be an inpatient treatment center that specializes in eating disorders and diabetes.

Whichever treatment regimen is best for the individual, it is important to receive on-going therapy by a health professional. If you would like some more information or to connect with someone right away, you can go to the Diabulimia Help Line.

Coping

Coping with a chronic condition, like diabetes, is difficult on its own. When you add an eating disorder, like diabulimia, it can make living day-to-day extremely difficult for those suffering with the disease as well as their loved ones.

Dr. Hymowitz says, "Social support can be immensely helpful for coping with diabulimia. Support groups, either in person or online." Support groups should contain groups that consist of members at every stage of recovery.

Hymowitz also suggests, "Look for support groups that focus on health enhancing behaviors rather than groups that emphasize body shape or dieting.  It is also important to look for groups that consist of members in different stages of recovery."

Loved ones can be an important part of the coping and treatment process, especially if they are educated on type 1 diabetes and eating disorders. Understanding what the person with diabulimia is going through will better equip you to understand how they are feeling and why they behave in certain ways.

Dr. Hymowitz says, "Family members and friends should try to avoid focusing conversations on weight and shape, food, dieting, or eating. This includes avoiding body focused compliments. Friends and family members can also make sure that they listen and validate rather than jump directly into advice giving mode."

A Word From Verywell

Diabulimia is a complicated and serious eating disorder found in people with type 1 diabetes who purposefully omit insulin to lose weight. Because there are serious physical complications, both short term and long term, to omitting insulin, timely and frequent screenings are important, especially during puberty (a time when eating disorders are more common generally).

In addition, a multidisciplinary approach to treatment is vital. The team must consist of an endocrinologist, a dietitian who specializes in diabetes and eating disorders, as well as a psychologist. Depending on the severity of the disease, treatment may include on-going outpatient appointments or in more severe cases, a higher level of care offered at an inpatient treatment center.

Regardless of the treatment facility, treatment will include psychological counseling, active listening, and a true thirst for understanding the person's behaviors. Simply reinforcing diabetes counseling and diabetes complications is not enough and can in fact cause more harm.

Was this page helpful?
Article Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Hanlan ME, Griffith J, Patel N, Jaser SS. Eating disorders and disordered eating in type 1 diabetes: Prevalence, screening, and treatment options. Curr Diab Rep. 2013 doi:10.1007/s11892-013-0418-4

  2. American Diabetes Association. Eating disorders.

  3. Allan JA. Understanding poor outcomes in women with type 1 diabetes and eating disorders. Journal of Diabetes Nursing. 2015;9:99—103.

  4. National Eating Disorder Association. Diabulimia.