What Is Diabulimia?

Diabulimia, often referred to as ED-DMT1, is a very serious condition in which a person with type 1 diabetes deliberately doesn't take their insulin so they can 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 includes an eating disorder diagnosis, such as bulimia or anorexia nervosa. The behaviors associated with the eating disorder can help your healthcare practitioner identify, diagnose, and treat your condition.

What Is Diabulimia?

Diabulimia can affect people with type 1 diabetes who need to take insulin to maintain blood sugar control.

If you have type 1 diabetes, a hyper-focus on blood glucose numbers, label reading, meal planning, carbohydrate counting, food restrictions, and rules can increase the 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 understand it and identify it.

Type 1 Diabetes and Eating Disorders

Research indicates that there's a higher prevalence of eating disorders among people with type 1 diabetes than among their peers of the same age. 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 a severe risk for increased morbidity and mortality.

Symptoms

People with type 1 diabetes need to take insulin, a hormone that has many roles in regulating blood sugar. 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. But other serious adverse health effects occur too.

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 says, "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 skin

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

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

• Hemoglobin A1C of 9.0 or higher on a continuous basis
• Low sodium and/or potassium
• Dehydration
• Frequent bladder and/or yeast infections
• Irregular menstruation or lack of menstruation
• Loss of muscle mass
• Multiple DKA or near-DKA episodes

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 diabetes 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.

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

Diabulimia is not a formal psychiatric diagnosis. 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.

It may be diagnosed as:

• Bulimia nervosa if the person is binging then restricting insulin
• Purging disorder if the person is eating normally and restricting insulin
• 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.

A multidisciplinary team that includes an endocrinologist, a registered dietitian who specializes in diabetes and eating disorders, and a mental health professional can help you get the treatment plan you need.

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 can work with you and your family.

Depending on the severity of the disorder, people with diabulimia may be able to get treatment 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 purging that causes dangerous electrolyte imbalances."

• 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 healthcare professional with be vital in treatment."
• 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 says, "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 diabulimia 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.

It is important to receive ongoing 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

Acceptance and willingness to seek help is an important step in coping with this condition.

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 part of treatment.

Dr. Hymowitz says, "Social support can be immensely helpful for coping with diabulimia. 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 can learn about 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 that affects people who have type 1 diabetes and purposefully omit insulin to lose weight. Because there are serious long-term and short-term complications from omitting insulin, timely and frequent screenings are important.

Depending on the severity of the disease, treatment may include on-going outpatient appointments or in more severe cases, a higher level of care at an inpatient treatment center might be needed.