A 2017 BBC documentary called diabulimia, “the world’s most dangerous eating disorder.” While the term diabulimia has only been in use since the mid-2000s, the condition has been described in journals since at least 1983, and medical professionals have documented co-occurring type 1 diabetes and eating disorders for over 50 years. While by definition, it can only affect people with type 1 diabetes, diabulimia is a growing concern.

What Is Diabulimia?

Diabulimia emerged as a popular term but is being used more frequently in clinical literature. The National Eating Disorders Association (NEDA) provides this diabulimia definition: “An eating disorder in a person with type 1 diabetes wherein the person purposefully restricts insulin in order to lose weight.”

The standard diabulimia meaning can refer to a range of clinical scenarios. In most cases, a person with diabulimia manipulates insulin levels to lose weight, but they may also engage in other disordered eating behaviors. Diabetes writer and NEDA volunteer Amy Gabbert-Montag describes three variations of diabulimia:

  1. Binging on food and restricting insulin as well as purging in other ways (bulimia type)
  2. Restricting insulin in addition to significantly restricting food (anorexia type)
  3. Generally restricting insulin regardless of the amount of food eaten

Gabbert-Montag notes that some people use the term diabulimia to refer to a broader set of bulimic symptoms in people with diabetes including other forms of purging. What is diabulimia, then? It can refer to insulin restriction to lose weight, but can also describe a broader range of bulimic symptoms in people with type 1 diabetes.

Diabulimia Warning Signs and Symptoms

As with other eating disorders, diabulimia warning signs can be both physical and psychological. Weight loss and fatigue can signal the onset of diabulimia or other eating disorders, but only in the context of other symptoms. Other medical or mental health conditions can affect appetite, energy levels and weight, and a careful diagnostic process is required to rule them out.

In the early stages, it may be easier to recognize psychological diabulimia symptoms. People with diabulimia often express concerns about their weight and might even mention using insulin to manage it. They may hint at or openly share fears that eating certain foods or using insulin could cause them to gain weight and avoid eating or using insulin in front of other people.

Psychological Symptoms

The psychological symptoms of diabulimia resemble the symptoms of other eating disorders. Eating disorders can develop from different combinations of psychological stress, emotional avoidance, low self-esteem and fixation on weight. Psychological diabulimia symptoms can include:

  • Praising the appearance of people who are underweight
  • Focusing conversations on food, weight or calories
  • Expressing concerns about weight or appearance
  • Talking about insulin’s effects on weight
  • Exhibiting signs of depression or anxiety
  • Isolating and avoiding social activities
  • Being secretive about insulin use
  • Avoiding medical appointments
  • Refusing to eat in front of others

People with eating disorders can project their shame and anxiety onto others, testing the response they get to critical comments about others’ weight or appearance. When people agree with these critiques, it can reinforce their internal narratives about how other people judge them based on their weight.

Physical Symptoms

Physical symptoms of diabulimia can be quite severe, up to the point of stroke, coma or death. Other physical diabulimia symptoms can include:

  • Cessation of menstruation
  • Irregular heart rate
  • Nausea or vomiting
  • Frequent urination
  • Bladder infections
  • Rapid weight loss
  • Dry skin or hair
  • Blurred vision

Medical signs of diabulimia can include high blood glucose results on A1C tests and symptoms of chronic dehydration.

Effects of Diabulimia

The effects of diabulimia include dangerous medical complications. People with diabulimia can experience several short-term and long-term physical effects of frequent insulin restriction:

  • Loss of muscle tissue
  • Reduced immune system function
  • Frequent bacterial or yeast infections
  • Temporary or permanent eye damage
  • Pain, tingling or numbness of the limbs
  • Chronic illnesses like kidney, liver and heart disease

One of the reasons that skipping insulin shots causes weight loss is that without insulin, the body cannot use sugar for energy and instead flushes excess sugar through urine. For energy, the body breaks down fat and produces ketones. This process is behind the popular “keto” diet and is not necessarily dangerous in itself.

However, excess ketones can cause ketoacidosis, a dangerous medical condition in which the blood becomes too acidic. Diabetic ketoacidosis (DKA) can cause critical damage to the liver and kidneys and even death. Symptoms of DKA include symptoms of severe dehydration, confusion, fruity breath, nausea and breathing issues. Many of the most severe diabulimia consequences follow from recurrent episodes of DKA.

Causes of Diabulimia

The causes of diabulimia are multifaceted and complex. In general, eating disorders are caused by a combination of genetic factors, differences in personality and temperament, and personal experiences including childhood trauma, victimization and stress. Women are more likely to develop diabulimia and other eating disorders for several reasons, including cultural messages about the role of weight in a woman’s value and social status.

People with type 1 diabetes often become underweight or experience weight loss before they are diagnosed and start taking insulin. The experience of beginning treatment for diabetes and gaining weight can be stressful and demoralizing, especially when a person goes from being underweight to being overweight. Women who are bullied for the change in their weight and who have other risk factors may develop diabulimia or other eating disorders.

Diabulimia Risk Factors

In addition to having type 1 diabetes, other diabulimia risk factors include:

  • Personality traits like perfectionism and neuroticism
  • Genetic predisposition, or a family history of eating disorders
  • A history of childhood trauma, neglect or abuse, including bullying
  • Social and cultural factors including social and media pressure to be thin
  • Growing up in a family where dieting or overeating was common

Whether a history of dieting is a risk factor for diabulimia or other eating disorders is controversial.

Diagnosing Diabulimia

There is currently not an official diabulimia diagnosis in major medical or psychiatric reference guides. Doctors often use the term Eating Disorder-Diabetes Mellitus Type 1 (ED-DMT1) to diagnose diabulimia, while mental health professionals may use the Other Specified Feeding and Eating Disorder (OSFED) diagnosis from the Diagnostic and Statistical Manual of Mental Disorders (DSM).

Growing awareness is helping more clinicians recognize and diagnose diabulimia. Using a standard clinical interview process, doctors and mental health professionals can determine whether people with type 1 diabetes also have an eating disorder. Focused, sensitive questions can illuminate whether a person is preoccupied with their weight and restricting insulin.

Diabulimia Statistics

Diabulimia statistics show that the prevalence rates of diabulimia are 11 to 15 percent in adolescent girls and 30 to 39 percent in adult women.

Women with type 1 diabetes have more than twice the risk of developing an eating disorder than women without diabetes.

Women who restrict insulin to control their weight die as much as 13 years younger than women who don’t. The mortality rate from diabulimia every year is nearly 35 percent.

Diabulimia Treatment

Diabulimia treatment can be difficult. All eating disorders require medically supervised treatment, and the medical component of diabulimia treatment is even more intensive and specialized.

Unfortunately, eating disorder treatment and diabetes treatment may conflict with one another. While people with diabetes must learn to read labels, count calories and count carbohydrates, people with eating disorders are usually counseled to do the opposite. The same eating plans that can help people who have other eating disorders gain several pounds a week can cause people with type 1 diabetes to gain 10 or 20 pounds.

It is important for people with diabulimia to receive medically informed and supervised treatment. The first and most intensive part of diabulimia recovery may need to take place at diabulimia treatment centers. There are a few of these specialized facilities in the United States. Inpatient treatment at a diabetes-informed eating disorder facility is another option.

Inpatient or intensive outpatient treatment for eating disorders typically involves medical treatment, nutrition counseling and therapy. Research shows that cognitive behavioral therapy (CBT) is an effective psychological intervention for bulimia and other eating disorders. In CBT, people with eating disorders can examine and challenge distorted thinking related to their self-image and develop behavioral strategies to avoid or cope with triggers to binge or restrict.

Diabulimia and Co-Occurring Disorders

For people with diabulimia and other co-occurring mental health disorders, treatment can be even more complicated. It is important for people seeking recovery from both diabulimia and substance use disorders to receive medically supervised treatment, often first at an inpatient facility, where both withdrawal symptoms and complications of diabetes can be addressed.

If you have a substance use disorder and co-occurring diabulimia, help is available. The Recovery Village operates integrated treatment centers for people with substance use disorders and a wide range of co-occurring conditions. Some of our facilities offer eating disorder treatment. Please contact The Recovery Village to learn more about treatment options that can meet your needs.

    

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