Diabulimia and type 1 diabetes: symptoms and treatment

Anyone with type I diabetes knows how complicated and aggravating it is having to constantly measure blood sugar levels, carefully plan everything they’re going to eat, and calculate how much insulin they need.

All of the needle sticks can be painful and exhausting, and for many people with type 1 diabetes, the insulin injections they need to survive can also cause unwanted weight gain. 

Even though insulin injections allow the body to function properly and stave off serious complications, many people (particularly young women) find themselves restricting insulin to avoid any weight gain. 

This condition, known as diabulimia, got its name from the combination of the words diabetes and bulimia. Although the term isn’t officially recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), like many other eating disorders, scientists and healthcare providers are familiar with it.

Diabulimia is more common in women, although anyone can have it. An estimated 20–40% of women with type 1 diabetes develop diabulimia at some point (Allan, 2015; Chelvanayagam, 2018).

Let's take a closer look at the important role of insulin in the body, why it can contribute to weight gain, and recommended ways to treat diabulimia.

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In people with type 1 diabetes, the immune system destroys cells in the pancreas that produce insulin.

Insulin is a hormone that's released by the pancreas when we eat and at little bits throughout the day. It works like a key, opening our cells and letting them take in sugar from the bloodstream to use as energy. 

When a person has low or absent levels of insulin, they can’t utilize sugar from the bloodstream. Instead, it ends up being filtered out of the blood by the kidneys and released in their pee. 

This can have a few consequences. Since your muscles aren’t getting the energy you need, you begin to feel exhausted. Since your body can’t use sugar, you begin to lose weight. On top of that, all the sugar that enters your kidneys uses up a lot of water, making you super thirsty and need to urinate a lot more. 

While most of these symptoms sound like minor inconveniences, some are dangerous and even deadly. Since it can’t properly process sugar, the body turns to other sources of energy.

When your body uses fats or proteins instead of sugars, leftover waste products can build up in the bloodstream causing a very dangerous condition called DKA (diabetic ketoacidosis).

Over time, all the sugar that stayed in your bloodstream can damage kidneys, nerves, and blood vessels. 

For a person with type 1 diabetes, they can’t use sugars. This means many of the calories they consume exit the body unused.

Since it needs to get energy elsewhere, a lot of calories from fat stores are burned, which causes further weight loss. This process is reversed when insulin injections start. 

Insulin therapy helps maintain healthy blood sugar levels. It also leads to weight gain. In fact, putting on weight is a sign the treatment is working (Young-Hyman, 2010). 

But for some people, the weight gain is too much to bear––especially on top of managing the day-to-day stresses of living with diabetes. They may develop diabulimia by skipping or reducing doses of insulin to keep any new weight off (Pinhas-Hamiel, 2015).

For individuals with type 1 diabetes, any kind of insulin restriction can be life-threatening. 

Diabetes already puts extreme stress on the body, and restricting insulin makes it worse. People with diabulimia have higher blood sugar levels and may experience repeated episodes of diabetic ketoacidosis, an acute condition that without immediate treatment can result in coma, kidney failure, heart problems, and death. 

Diabulimia also increases a person’s risk of other diabetes-related complications like kidney failure, vision loss, and neuropathy (muscle numbness or pain in the hands and feet).

People with diabulimia are three times more likely to experience vision loss or early death (Hanlan, 2013; Pinhas-Hamiel, 2015).

The primary sign of diabulimia is insulin restriction. However, people with eating disorders often mask or hide their behavior, so loved ones may not be aware of what’s happening. 

More noticeable symptoms of diabulimia include (Hanlan, 2013; Chelvanayagam, 2018):

• Weight loss

• Obsession over body weight

• Excessive focus on blood glucose numbers

Diabulimia can be accompanied by other eating disorders like anorexia or bulimia. In these instances, the person may exhibit additional symptoms like (Hanlan, 2013):

• Counting calories

• Binging or purging behavior

• Food restriction

• Excessive exercise

• Body image distortion

To manage type 1 diabetes, people have to keep track of what and how much they’re eating. This heightened focus on food alone can disrupt a person’s eating habits or distort their perspective when it comes to their weight.

Research suggests that people with diabetes may have an easier time masking symptoms of an eating disorder since they already spend so much time handling their condition. This is one explanation for why people with type 1 diabetes have higher rates of eating disorders compared to those without (Hanlan, 2013). 

Diabulimia may come on at any time, although it usually begins in early adolescence. Being diagnosed with type 1 diabetes during adolescence also increases the risk of diabulimia, since insulin therapy can add to the normal weight gain that occurs during puberty.

Younger women are the most vulnerable group, with girls being twice as likely as boys to develop diabulimia. 

Teenagers with diabetes are also more likely to report having a negative body image and wanting to be thinner. A history of disordered eating also increases the chance of diabulimia. Studies have found those with eating issues are at double the risk of misusing their insulin (Hanlan, 2013).

People with type 1 diabetes are more prone to depression and anxiety, two conditions linked to higher rates of eating disorders. One study found 77% of those with diabulimia had also been diagnosed with another mental health condition (Allan, 2015).

Restricting insulin for weight loss is common for many with type 1 diabetes. 

Despite its prevalence, diabulimia is not officially recognized in the DSM-5. People with diabulimia are often secretive about their symptoms, which makes recognizing the warning signs difficult. Due to its lack of official recognition and secretive nature of symptoms, diabulimia is often underdiagnosed (Allan, 2015).

To determine if you or someone you love has diabulimia, a health provider may ask questions about your attitudes toward food and body weight. You’ll be asked whether you think of some foods as “good” or “bad,” and if you’ve ever been overweight. They will also ask about your behaviors around eating and insulin use (Hanlan, 2013).

A key component to diagnosing diabulimia is insulin restriction. Although other eating disorders may be present, restricting insulin for weight loss is a core symptom unique to diabulimia.

Left untreated, disordered eating persists for years and rarely resolves on its own. For people with type 1 diabetes, diabulimia can lead to hyperglycemia and serious health complications (Pinhas-Hamiel, 2015).

Treatment for diabulimia often includes help from endocrinologists, dieticians, and mental health professionals. Family therapy or cognitive behavioral therapy may be recommended, while dieticians can provide nutritional counseling to assess eating patterns and monitor nutrient intake (Allan, 2015; Hanlan, 2013).

Healthcare providers can also recommend healthy ways to control the potential weight gain associated with insulin therapy. These may include (Bird, 2017; CDC, 2021):

• Regular exercise. Both aerobic and resistance exercise, as well as high-intensity interval training (HIIT), can help with weight management. Depending on the frequency and intensity of physical activity, you may need to adjust your insulin intake or diet to maintain blood sugar levels.

• Healthier diet. Incorporate more non-starchy vegetables, such as broccoli, green beans, cauliflower, carrots, and spinach into your diet. Opt for foods with fewer or no added sugars, and replace processed foods with single-ingredient products.

• Portion control. Eating smaller portions helps prevent weight gain. When going out to eat, try taking half of your meal to go. At home, pour snacks into a bowl instead of eating straight from the package. 

• The plate method. Fill half of your plate with non-starchy vegetables. Split the other half of the plate in two, dedicating one quarter to lean proteins and the other to carbs. 

• Drink more water. Replace high-calorie beverages and fruit juice with water to stay hydrated and avoid raising your blood sugar.

If you or someone you love is experiencing an eating disorder, contact your health provider. You can also reach the National Eating Disorder Association Helpline at 1-(800)-931-2237.

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Current version

July 28, 2021

Written by

Amelia Willson

Fact checked by

Yael Cooperman, MD

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About the medical reviewer

Yael Cooperman, MD, Ro

Yael Cooperman is a physician and works as a Senior Manager, Medical Content & Education at Ro.