Diabulimia

Diabulimia is an eating disorder in which someone with Type 1 diabetes withholds insulin to lose weight. It can be life-threatening.

People with diabulimia may have other disordered eating behaviors, like purging. Or they may only limit insulin dosages and otherwise have healthy eating patterns.

The name “diabulimia” is misleading. Not all people who have it binge eat or purge — the defining features of bulimia nervosa. Despite this, people widely use the term “diabulimia” to describe limiting insulin to lose weight. Diabulimia is also known as an “eating disorder in diabetes mellitus Type 1 (ED-DMT1).”

By changing your weight with a lack of insulin, you may feel like you finally have control of your body. But diabulimia can lead to severe health problems and even death. It’s essential to get help if you or someone you know has warning signs.

Why does a lack of insulin lead to weight loss?

Insulin is an essential hormone your body needs to use the food you eat for energy. It does this by taking glucose (sugar) out of your bloodstream and moving it into your body’s cells.

If you have Type 1 diabetes and don’t have enough insulin, your body starts breaking down body fat and muscle for energy. This is because it can’t access glucose.

No matter how much you eat, your body is essentially starving because it can’t use the food you eat for energy. This leads to a decrease in body weight.

But this type of weight loss is very dangerous. It can lead to a toxic buildup of ketones in your blood (ketoacidosis). If the lack of insulin is persistent, it can also lead to severe dehydration. This causes weight loss in the form of water loss, which is also dangerous.

Symptoms of diabulimia

Physical signs and symptoms of diabulimia may include:

• An A1c of 9.0 or higher
• Unexplained weight loss
• Dizziness and fainting
• Electrolyte imbalance (sodium and potassium)
• Fatigue
• Nausea and vomiting
• Persistent thirst and frequent urination
• Irregular periods
• Vision changes

Emotional and behavioral signs of diabulimia include:

• Avoiding diabetes-related appointments
• Fear of low blood sugar episodes due to needing to eat food to treat them
• Fear that insulin causes weight gain
• Feeling drained by diabetes management (diabetes distress and burnout)
• Infrequently filled insulin prescriptions
• Irritability and mood swings
• Secrecy about diabetes management
• Multiple diabetes-related ketoacidosis (DKA) episodes or near-DKA episodes
• Not giving insulin (bolusing) for meals and/or under-bolusing for meals

If you or someone you know has these signs of diabulimia, it’s important to seek medical help. One study estimates that diabulimia affects roughly 1 in 11 adults with Type 1 diabetes. It’s more common than most people realize.

Diabulimia causes

There’s no one cause of diabulimia. Diabulimia and all eating disorders are complex conditions. There are lots of reasons diabulimia may develop. And it may be a combination of physical, social and mental health problems.

The mental work of managing diabetes can play a part in triggering diabulimia and other eating disorders, like:

• Constant and intense focus on food, especially counting carbohydrates
• Carefully reading nutrition labels
• Tracking several numbers, like blood glucose levels, A1c results and weight

Several other factors could contribute to developing diabulimia, including:

• A desire to lose weight
• Body image issues
• Diabetes distress
• Cultures that idealize a particular body type — usually “thin” bodies
• Feeling unsupported
• Mental health conditions, especially clinical depression and anxiety
• Needing to eat food to treat low blood sugar
• Peer pressure
• Previous history of eating disorders
• Trauma
• Wanting a sense of control
• Weight gain after initial diabetes diagnosis and treatment

If you or a loved one has signs of diabulimia, it’s important to seek help.

Complications of diabulimia

Diabulimia can have severe short-term and long-term health consequences.

Short-term complications of diabulimia

Several of the short-term complications of diabulimia are due to persistently high blood sugar. Short-term complications include:

• Diabetes-related ketoacidosis (DKA)
• Severe dehydration
• Slow wound healing
• Staph and other bacterial infections
• Yeast infections and urinary tract infections (UTIs)
• Loss of muscle mass (muscle atrophy)

Long-term complications of diabulimia

Long-term complications of diabulimia are the same as those of diabetes. But people who have diabulimia may experience these complications sooner.

Long-term complications include:

• Cardiovascular disease
• Nerve damage to your eyes (retinopathy)
• Nerve damage to your feet and hands (neuropathy)
• Stomach paralysis (gastroparesis)
• Kidney disease
• Liver disease

These complications can lead to frequent hospitalizations and death.

How doctors diagnose this condition

Eating disorders, in general, are difficult to diagnose. They’re usually secretive conditions. Many people with an eating disorder don’t seek treatment on their own. This may be especially true for people who have diabulimia. People with diabetes often fear criticism from healthcare providers or loved ones for mismanaging it.

Because of this, many people with diabulimia are undiagnosed.

You may suspect your loved one has diabulimia if they have an A1c of 9.0 or higher. Another common sign is multiple DKA episodes without any other explainable cause.

It can be difficult to tell the exact cause of persistent high blood sugars. So, in most cases, a person needs to admit that they’re withholding insulin for others to know they have diabulimia.

How is diabulimia treated?

The goals of diabulimia treatment include:

• Using insulin appropriately
• Healthily managing blood glucose levels and weight
• Avoiding short-term and long-term diabetes complications
• Treating psychological issues that may have contributed to diabulimia

Treatment for diabulimia most often involves a combination of the following strategies:

• Medical evaluation and/or hospitalization
• Psychotherapy (talk therapy)
• Nutrition and/or diabetes education
• Medications to help manage depression and anxiety

Diabulimia has physical and psychological components. So, its treatment involves care from multiple types of healthcare providers, including:

• Certified diabetes care and education specialists (CDCES)
• Endocrinologists
• Psychologists
• Registered dietitians

Medical evaluation and/or hospitalization

First, it’s important to make sure a person with diabulimia is medically stable. If they have DKA, they’ll need treatment in a hospital.

In severe cases of diabulimia, treatment will require hospitalization. This way, providers can ensure they’re not restricting insulin. If the person has other eating disorder behaviors, providers can also monitor these.

Providers will likely recommend tests to check for complications.

Psychotherapy

Psychotherapy (talk therapy) focuses on changing your problematic thinking and behavior patterns.

People with diabetes are two to three times more likely to have depression than others. In addition, people with diabetes are 20% more likely than others to have anxiety.

Psychotherapy can help treat depression and/or anxiety. Exploring your feelings about diabetes through therapy can also help with diabetes burnout.

Nutrition and/or diabetes management education

Having a thorough understanding of diabetes can help you feel more confident managing it. With the help of a CDCES, you can learn about the biology of diabetes and management strategies.

Nutrition education may help if you have problematic thinking about certain food groups (for example, “carbohydrates are bad”). And it can help with other disordered eating behaviors.

What is the prognosis for someone with diabulimia?

The prognosis (outlook) for someone with diabulimia varies depending on certain factors, like:

• How long the person has had diabulimia
• How much and how often they’re restricting insulin
• If they have other disordered eating behaviors
• The type of treatment and if they stick to it

Diabulimia gets worse the longer it’s left untreated. The sooner you get help, the better the outcome. But people with diabulimia often won’t disclose that they’re withholding insulin. They might resist treatment or refuse to follow the treatment plan.

Diabulimia is a serious and potentially life-threatening eating disorder if it’s untreated. People with diabetes tend to have a somewhat shorter lifespan than others. But people with diabulimia are at risk of dying much earlier than people with diabetes alone.

The good news is that diabulimia can be treated. Support of loved ones can help ensure a person with diabulimia sticks to their treatment.

How can I take care of myself?

It can be uncomfortable and scary, but it’s important to tell someone if you have diabulimia.

If you already have a diabulimia diagnosis, stay committed to your treatment plan:

• Take your prescribed insulin doses regularly.
• If you take other prescribed medication, be sure to take it regularly.
• If you’re doing talk therapy, see your therapist regularly.
• Reach out to family and friends for support.
• Consider joining a support group for people who have diabetes and/or diabulimia.
• Avoid content (like on social media) that may trigger diabulimia behaviors.
• See your healthcare provider regularly.
• Be kind to yourself.