A new eating disorder, dubbed “diabulimia” by the media, has begun attracting interest. Unlike most eating disorders, diabulimia occurs in one specific demographic: people with type 1 diabetes.

Eating disorders are dangerous conditions requiring professional assistance to overcome. Without treatment, eating disorders can lead to numerous health problems in every major body system, especially the cardiovascular system, gastrointestinal tract, and musculoskeletal system, as well as in the kidneys and brain.

Eating disorders also have the highest rate of mortality of any mental health disorder. Anyone of any race, gender, age, and socioeconomic background can develop an eating disorder. It is estimated that 20 million women and 10 million men will develop an eating disorder at some point in their lives.

Eating Disorder Diagnostic Manual

In the most recent diagnostic manual, there are only three defined eating disorders: anorexia nervosa, bulimia nervosa, and binge eating disorder. However, there are disordered eating behaviors, such as yoyo dieting, self-induced vomiting, abusing laxatives, and self-starving, in which a person might engage but still not fulfill the diagnostic criteria for these three conditions.

There is a catch-all category for this situation, known as Eating Disorder Not Otherwise Specified (ENOS), but research is being conducted about conditions, including diabulimia, that may be included as defined eating disorders in the future. Disordered eating behavior can be dangerous to a person’s health, even if it is not done enough for a diagnosis, and a person engaging in such behavior has a high risk of developing a full blown disorder.

What is Diabulimia?

Diabulimia is when a person with type 1 diabetes purposefully reduces insulin intake in order to lose weight. The term diabulimia, an informal term not used in the medical community, comes from combining the terms bulimia and diabetes. In the medical community, the more accepted term for the comorbidity of eating disorders and diabetes is ED-DMT1 (eating disorder-diabetes mellitus type 1).

Diabulimia is not as well researched as some of the other eating disorders, but a 1994 study on diabetics found that 30 percent of women with type 1 diabetes intentionally restricted their insulin intake in order to lose weight, suggesting that a significant number of people engage in this behavior.

Another study found that girls with type 1 diabetes were 2.4 times as likely to develop an eating disorder as their non-diabetic counterparts. Recent studies put the prevalence of eating disorders in those with type 1 diabetes at between 11 and 39 percent, although it is most likely higher because the data comes from self-reported surveys. Other statistics show that a college-aged female in the general public has a 20 to 40 percent chance of developing an eating disorder, while those with diabetes have double the risk.

Almost 3 million Americans have type 1 diabetes (sometimes called juvenile or early-onset diabetes), a genetic condition in which the pancreas stops producing insulin. Type 2 diabetes occurs when the cells do not respond, or respond incorrectly, to the signals produced by the insulin. Unlike type 2 diabetes, which can be prevented, maintained, and treated by diet and exercise, type 1 diabetes requires lifelong maintenance that involves a very specific diet and regular insulin injections. About 30,000 people are diagnosed with type 1 diabetes annually, usually in childhood.

What Causes Diabulimia?

Like other eating disorders, diabulimia does not have one specific cause. It develops due to a combination of genetics, psychological and biological factors, emotional issues, and societal and peer pressures. Although it is not known why there is such a high comorbidity between eating disorders and type 1 diabetes, some experts hypothesize it is due to the constant focus diabetics must have on food and sugar intake to maintain their condition. The obsession with food can easily turn into disordered eating patterns, which can lead to an eating disorder.

There are some characteristics and behaviors unique to those with type 1 diabetes that potentially increase the risk factors and make those with type 1 diabetes more vulnerable to developing an eating disorder. Many people are first diagnosed with diabetes as teenagers, a high-risk age for developing eating disorders. Before being diagnosed, many of these teenagers find themselves the envy of their peers, because they can eat whatever they want and lose weight. However, once they are diagnosed with diabetes, they gain weight, often very quickly. This might result in being teased by their peers, or cause them to develop a negative body image.

Food Becomes The Enemy

Food also becomes the enemy, since the wrong food might send them into a diabetic coma. Diabetics have to focus on how much sugar and carbohydrates are in every morsel of food they eat, and the process of picking out food and eating becomes more about sustaining life than seeking pleasure. Restrictive diets make diabetics unable to enjoy some of the same foods as their peers, and they might feel embarrassed or ashamed about their condition. They also might end up obsessed about food, both to ensure they eat correctly as well as fantasizing about foods they cannot eat.

Diabetics are also under constant watch and care. Even if type 1 diabetes is managed competently, it can lead to devastating health problems and an earlier death. Diabetics have to go to the doctor frequently, and regularly take blood sugar tests, including a blood test that shows the levels for the past few months. They also need to maintain a healthy weight to minimize stress on the body.

Additionally, diabetics are at a high risk of developing depression and anxiety, which are also common co-occurring conditions with eating disorders. There might be related underlying causes of all these disorders that could contribute to making those with diabetes more susceptible to an eating disorder.

When combined, these factors make it easy for someone with type 1 diabetes to develop disordered eating patterns focused on managing weight. Unlike their peers, who would have to diet, exercise, or turn to disordered eating patterns such as starving or vomiting to lose weight, all a type 1 diabetic has to do is alter the insulin dose. It is easy to do, and many diabulimics are either unaware of the negative consequences, or just do not care. They might also engage in this behavior just to be able to feel in control, which is another trait common to those with eating disorders.

How Does Diabulimia Work?

The body is dependent upon insulin to metabolize food into sugar, which cells need for energy. Without insulin, rather than entering the cells and being used or stored as energy, sugar remains in the bloodstream, and is urinated out. It requires a lot of water for the kidneys to process all the sugar for removal from the body.

This is why diabetics not on insulin are often very thirsty and dehydrated, as well as urinate frequently. Without energy, cells signal the brain that more fuel is required, which keeps the body in a constant state of hunger. The body requires energy to function, so it will start taking the energy from fat storage and muscle, which is never restocked, so a person rapidly loses weight.

Because of this process, when a type 1 diabetic does not take insulin, he or she can eat sugary, high carbohydrate foods and even thousands of calories a day and still lose weight, instead of gaining. This allows a person to binge on favorite foods that are often forbidden on the diabetic diet.

Diabetics quickly recognize that they can easily and rapidly lose weight by manipulating their insulin levels. This dangerous behavior pattern can quickly spiral into continually maintaining a low weight through insulin manipulation. This process puts a lot of stress on the body and can have dangerous consequences.

What Are The Consequences Of Diabulimia?

Diabulimia combines two medical conditions, each of which has potentially life threatening results: an eating disorder and diabetes. Diabetes, even when well managed, has many health complications associated with it, including eye problems, kidney damage, heart attacks, stroke, nerve damage in the hands and feet, gum disease, open sores in the foot, infections requiring amputation, and more. When diabetes is not managed, whether due to diabulimia or another reason, a person has an increased risk of developing these health problems.

Additionally, not using insulin increases the risk of developing a serious condition known as diabetic ketoacidosis (DKA). One byproduct of burning fat for energy is the liver’s product of substances called ketones. When fat is burned too quickly, there is an excess of ketones. This causes blood to become acidic, which can damage organs and cause death. People with diabulimia are prone to DKA, which causes health problems and typically lands them in the hospital.

Even when it does not cause death, diabulimia can cause irreversible health problems. It expedites the known problems associated with diabetes, with people encountering the complications of diabetes in their 20s and 30s rather than later in life. It also causes fatigue, muscle weakness, osteoporosis, and more. The kidneys are often affected the most because they have to process all the non-metabolized sugar. This requires a lot of water, and even when a person drinks large amounts, it leads to dehydration, electrolyte imbalance, and even kidney failure. It can also cause heart problems.

In addition to the complications associated with diabetes, a person with diabulimia may also experience problems due to a lack of nutrition. This can also cause problems with major organs, as well as a chemical and electrolyte imbalance. Overall, this type of behavior pattern is nothing but detrimental to the body. It will cause damage, some of which may be permanent, and it increases the risk of death. Diabetes has a mortality rate of 2.5 percent per year. Anorexia, the eating disorder that has the highest mortality rate, has a 6.5 percent rate of mortality. Diabulimia has a 34.8 percent mortality rate per year.

Symptoms of Diabulimia

It is difficult to accurately diagnose diabulimia for many reasons. For one, people with eating disorders are really good at hiding their disordered eating behavior, and that also applies to those with diabulimia. In fact, it is even easier for them to hide it, because they can just blame it on forgetting to take insulin, rather than admit they have done so willingly.

Additionally, many doctors read the test results as poorly managed diabetes maintenance, rather than an eating disorder. They may chastise the patient, but someone with diabulimia will not listen. It is not that they are forgetting or mismanaging their diabetes, they are purposely doing so to maintain their weight.

Symptoms of diabulimia include:

Extremely high A1C test results (measures average blood sugar level for the past two to three months)

Frequent episodes of DKA, often requiring hospitalization

Very low blood sugar levels

Blood sugar levels fluctuating, but without a specific cause

Body image concerns, especially with an anxiety about being weighed

Engaging in episodes of binge eating or drinking at least two times a week over a period of three months

Excessively exercising

Problems with school, work, friends, family, or other relationships

Refusing to visit the doctor

Eating in secret or hoarding food, excessively dieting

Feelings of depression or anxiety

Isolation and no longer participating in favorite activities

Treating Diabulimia

For successful treatment of diabulimia, it is really important to have staff who are familiar with treating eating disorders and also knowledgeable about diabetes and the medical attention required to maintain the condition. If only the eating disorder is addressed, and the staff is not familiar with diabetes maintenance, it remains easy for the patient to continue to manipulate his or her insulin use.

Additionally, many eating disorder treatments concentrate on teaching patients to not focus so much on watching calorie and sugar consumption and otherwise monitoring their food consumption. However, type 1 diabetics have to continue to focus on the food they eat in order to maintain their condition, which increases their risk of relapse.

Another challenge when treating diabulimia is that people with diabetes will often rapidly gain water weight when they go back on their insulin. For example, they can swell up and gain 20 pounds overnight. For someone with body image issues that have contributed to an eating disorder, this type of rapid weight gain can affect their fragile sensibility and make them once again reduce their insulin intake.

Additionally, they might experience swelling of the legs that could scare them and make them not want to continue their insulin. Another problem is that sometimes, although they might experience health problems when not managing their insulin, when they start retaking it, they might feel worse. This is just the body readjusting to the insulin and it is important that they maintain it; however, some people will not want to go through this period.

Treatment Plans For Diabulimia

Diabulimia is difficult to treat; however, like other eating disorders, it is treatable. A person with diabulimia can learn to overcome the disorder and regain control over life—and his or her diabetes. Treatment of diabulimia should reflect a series of stages and incorporate a multidisciplinary team consisting of a medical doctor specializing in diabetes, a therapist who is an expert in eating disorders, and registered dietician. First, the diabetes must be managed, along with any other health complications caused by the eating disorder and mismanaged diabetes. Secondly, the person needs to have a psychological assessment to screen for any underlying and co-occurring mental health conditions.

Then, a treatment plan should be created that includes diabetes management and help for any mental and psychological problems. It should also teach life skills and coping mechanisms to help a person gain the strength to not relapse. Specialized meals that take into account the dietary requirements for diabetics should also be a part of the person’s treatment.

Awareness Of The Disorder

Recently, two recovering diabulimics launched We are Diabetes, an organization to raise public awareness and support for those with diabulimia. Over the past few years, more research and information has been published about the disorder and the risk of comorbidity of eating disorders and type 1 diabetes.

However, it is still difficult to diagnose and treat, and medical professionals need to be aware of the condition in order to recognize it and find appropriate treatment for those who display the disordered eating behavior patterns. Additionally, campaigns need to be made to warn those with type 1 diabetes about the risk of long-term complications for temporary weight loss.

Eating Disorder Treatment at Sovereign Health Group

Sovereign Health Group offers state-of-the-art, evidence based treatment for eating disorders, as well as mental health disorders, addiction, and dual diagnosis. Our programs utilize a multidisciplinary approach to treat the individual, not the disorder. You can learn more about our Eating Disorder Program here, or you can call our Admissions team at 866-264-9778.