Diabulimia is an eating disorder that happens when people with type 1 diabetes restrict insulin. It could stem from a few issues, including diabetes management burnout or body image issues that arise with weight gain after diagnosis. Diabulimia leads to high blood sugar levels, called hyperglycemia, which creates a host of short and long-term problems, including death. A team of healthcare providers, with an endocrinologist, psychologist or therapist, a registered dietitian-nutritionist (RDN), and a certified diabetes care and education specialist (CDCES), can develop a treatment plan to lead a patient to recovery.

What Is Diabulimia?

Diabulimia is an eating disorder in which people with type 1 diabetes restrict insulin doses in order to lose weight. Type 1 diabetes is an autoimmune disease where the immune system attacks the body’s insulin-producing cells. People with type 1 diabetes need to take insulin in order to manage their blood glucose levels.

Sometimes people with diabulimia completely eliminate their insulin intake and other times they reduce it by taking long-acting insulin and omitting mealtime doses, says Eric Ip, PharmD, CDCES, a clinical professor and the course director of clinical therapeutics at Stanford University in California, who has studied diabulimia.

Diabulimia can show up alongside other disordered eating behaviors such as purging, or an individual can simply withhold the insulin while eating a normal diet. It can be dangerous because a lack of insulin among people with type 1 diabetes can create serious health problems and even cause death.The signs of diabulimia can be broken into emotional, physical, and behavioral symptoms.

Physical Symptoms of Diabulimia

• Unexplained weight loss

• Excessive thirst and frequent urination

• Elevated A1C levels of 9 or higher

• Nausea

• Exhaustion

• Blurry vision

• Dry skin and hair

• Episodes of diabetic ketoacidosis (DKA)

• Urinary tract infections

• Yeast infections

Behavioral Symptoms of Diabulimia

• Neglecting diabetes management by not administering insulin properly

• Being secretive about testing for insulin and avoiding diabetes appointments

• Not filling insulin prescriptions

• Spending more time sleeping

Emotional Symptoms of Diabulimia

• Worry that insulin leads to weight gain

• Depression or anxiety over body image

• Tiredness over diabetes management and general irritability

• Hyperfocus on food and dieting

There’s no one cause at the root of every diabulimia case. Diabulimia (like other eating disorders) is complex, and the reasons behind the development of it could be from physical, social, or mental health problems. That said, diabulimia adolescents or individuals who are moving out of the home (and becoming in charge of their own diabetes management) are at a higher risk of diabulimia.There are also aspects of diabetes management that can lead to diabulimia, such as having to count carbohydrates and carefully track nutrient intake. “You're being asked to monitor and cut back on carbs and sugars, and it can lead to more of the categorization of good versus bad foods,” says Erin Birely, the owner of Birely Counseling Services and the alumni services coordinator at the Renfrew Center in Baltimore. “It can also cause more focus and almost an obsession over food labels and being aware of carbs.” That, plus the fact that diabetes management can be exhausting (after all, it’s a 365-day-a-year job), can sometimes set the stage for diabulimia.Diabulimia may also come about if someone’s struggling with body image issues after diagnosis. Before being diagnosed, people with diabetes tend to lose weight and then gain weight once they begin treatment, which can be troubling. “It can result in a lot of body image distress because weight gain in our society is seen as an inherently kind of negative thing as opposed to, ‘Oh this is actually [the right weight] if my body is functioning optimally,’” Birely says. “People experience that body image distress and conclude, ‘Well, if I just don't take my insulin, my weight doesn't go up.’”People who have struggled with other eating disorders are also at a higher risk of developing diabulimia.

Diabulimia is difficult to diagnose because most people aren’t forthcoming about the issues they’re having and may feel judged by doctors and family about the way they’re managing their health. “Our study showed that the majority of patients with diabulimia (65 percent) are not forthcoming about their insulin restriction with their medical team,” says Dr. Ip, referring to research published in Endocrine Practice.

Patients need to be open and honest with providers in order for them to know what’s happening and to be able to help. Providers also need to screen patients for diabulimia and inform them about its effects, Ip says. “While there is no official standardized diagnostic criteria for diabulimia, clinicians may use the mSCOFF screening questionnaire or ask the patient if they have ever skipped or reduced their insulin dose for weight management purposes,” Ip says.

Diabulimia treatment needs to encompass both the diabetes and the eating disorder. That’s why a team of doctors — including endocrinologists, psychologists or therapists, registered dieticians, and certified diabetes educators — can and should be involved in the treatment and recovery process.Following a medical evaluation, some patients will need to be hospitalized if they’re experiencing DKA so providers can administer necessary insulin doses and make sure the patient doesn’t continue restricting.

Medication Options

To treat diabulimia, an individual needs to resume taking insulin. They need to pick up their diabetes management and track their blood glucose levels.

That can be difficult, so psychological and behavioral treatments are typically needed before a patient is willing to get to this step.

Psychological and Behavioral Treatments

Non-medication options include:

• Cognitive behavioral therapy: CBT addresses problematic views and works on modifying behavior.

• Psychoeducation: This intervention helps patients become more informed about the chronic health condition and mental health issues they’re facing. It can also address underlying anxiety and depression, which many people with diabetes and many with diabulimia specifically face, according to Ip’s study.

• Nutrition and diabetes management education: The person can learn management strategies and clear up any confusion they have about the nutrients in certain foods.

For the best shot at preventing diabulimia, it helps to be knowledgeable about diabetes and diabetes management. Having the support of a medical team can also help with managing not only the chronic condition but the anxiety that goes with it, Birely says.

Maintaining a healthy relationship with food and setting realistic body expectations can also minimize the risk of developing diabulimia (and other eating disorders).

Diabulimia is treatable, but how long it takes to reach the recovery stage depends on how long diabulimia has been around, the extent to which insulin has been restricted, whether other eating disorders are present, and how treatment is being pursued. Diabulimia is easier to overcome if it is recognized and treated early, because it tends to get worse the longer it lasts. Many of the long-term issues, such as those affecting vision and the kidneys, come about months to years later, Ip says.If left untreated, diabulimia could be life-threatening. One study found restricting insulin increased the risk of death by a factor of 3.2, and individuals who restricted their insulin died an average of 13 years earlier than those who didn’t.

The health risks of diabulimia can be both short and long term.

Short-term complications of diabulimia include:

• DKA This is marked by a lack of insulin in the body, so the body turns to fat and muscle for energy instead. Ketones, which are acids the body creates when it burns fat instead of glucose, are released. That high number of ketones in the blood creates an acidic environment for people with diabetes, which is considered an emergency. This can come about within a day or two of restriction, Ip says.

• Dehydration The body tries to get rid of the excess ketones through urine, but it can get rid of too much fluid and lead to dehydration.

• Slow Wound Healing High blood sugar can negatively impact circulation, which can slow down the healing process.

• Bacterial Infections High blood sugar can also affect the immune system and increase the risk of staph or other infections.

• Yeast Infections Yeast infections are also the result of high blood sugar, which promotes yeast overgrowth.

• Loss of Muscle Mass The body begins to break down fat and muscle when it doesn’t have proper insulin levels.

Diabulimia long-term effects are the same as those for people who have diabetes, though they may come about sooner among people with diabulimia as a result of continuously high blood sugar levels. These include:

• Retinopathy

• Peripheral neuropathy

• Gastroparesis

• Cardiovascular disease

• Kidney disease

• Liver disease

These are serious health issues, some of which can lead to coma, stroke, or death.

Eating disorders tend to be more prevalent among people with type 1 diabetes, especially women and teenage girls. About 1 out of every 11 people with type 1 diabetes has diabulimia, according to one study involving 225 participants. But it could be even higher. Another study found 60 percent of people with type 1 diabetes reported they restrict insulin.

People with diabetes are at increased risk of depression, which is a mental health condition marked by feelings of tiredness or worthlessness, and changes in sleep patterns. “Diabulimia and depression frequently co-occur in patients with type 1 diabetes and can influence each other,” Ip says. “Our study showed that 40 percent of patients with diabulimia had major depression.”

As mentioned, people with diabulimia often experience episodes of DKA that don’t have an obvious cause.

DBH: Dream, Believe, Hope With Diabetes

This nonprofit has a hotline (425-985-3635) that offers help 365 days a year. The organization seeks to educate and support people dealing with diabulimia.

We Are Diabetes

This organization is primarily devoted to the support, education, and awareness for people with type 1 diabetes who are struggling with eating disorders.

Diabulimia Awareness Facebook Group

This online support group from Diabulimia Helpline is designated to help those with diabetes and eating disorders.

Reclaim Your Rise: Type 1 Diabetes With Lauren Bongiorno

This podcast episode, called “Diabulimia: The Intersection of Diabetes and Eating Disorders with Erin Akers,” focuses on how type 1 diabetes management can lead to perfectionism and the development of an eating disorder.

Diabulimia affects people with type 1 diabetes who restrict their insulin dose. Without proper diabetes management, blood sugar can rise to dangerous levels, leaving these individuals at increased risk of various conditions and even death. With support and education, recovery is possible and treatment involves returning to diabetes management.