Diabulimia

Overview

What is diabulimia?

Diabulimia is a life-threatening eating disorder in which a person with Type 1 diabetes withholds insulin in order to lose weight. People who have diabulimia may have any number of disordered eating behaviors, such as purging, or they may only reduce or withhold their insulin dosages and otherwise have healthy eating patterns.

Type 1 diabetes (T1D) is a chronic autoimmune disease in which your immune system attacks the insulin-producing cells in your pancreas. People with T1D need to inject synthetic insulin in order to live and manage their blood glucose (sugar) levels. Taking smaller-than-needed doses of insulin or no insulin at all can lead to severe health consequences, such as diabetes-related ketoacidosis (DKA) and diabetes complications.

The name “diabulimia” is a bit misleading because not all people who have it binge eat, which is the defining feature of bulimia nervosa. Nonetheless, the term “diabulimia” is widely used to describe restricting insulin in order to lose weight. Diabulimia is also known as an “eating disorder in diabetes mellitus Type 1 (ED-DMT1).” Just like anyone else, people with diabetes can also have eating disorders, such as anorexia or bulimia, without withholding insulin.

Diabulimia is a serious condition that requires treatment. A lack of insulin and persistently high blood sugar levels (hyperglycemia) can lead to dangerous health problems and even death.

Why does a lack of insulin lead to weight loss?

Insulin is an essential hormone that your pancreas makes and your body needs in order to use the food you eat for energy. It does this by taking glucose (a form of energy that’s mainly from carbohydrates you eat) out of your bloodstream and moving it into cells throughout your body. Your cells then use the glucose for energy and store any excess in your liver, muscles and fat tissue. Your cells and your body need energy to survive.

If you have Type 1 diabetes and don’t have enough insulin, your body starts breaking down fat and muscle for energy because it can’t access glucose. The glucose then stays in your bloodstream, causing high blood sugar. No matter how much you eat, your body and cells are essentially starving because they can’t use the energy from the food you eat. This leads to a decrease in overall body weight. However, this type of weight loss is very dangerous and has severe health consequences.

If the lack of insulin is persistent, it can lead to severe dehydration, which also causes weight loss in the form of water loss. This is also a dangerous form of weight loss.

A lack of insulin and the elevated blood sugar it causes can lead to several short- and long-term complications and can even cause death.

Does insulin make you gain weight?

Insulin by itself does not cause weight gain.

Leading up to a Type 1 diabetes diagnosis, many people experience profound and rapid weight loss since their body has to break down muscle and fat for energy instead of being able to use glucose from the food they eat. Once they receive treatment in the form of insulin for their diabetes, they usually gain some weight since all of the extra glucose in their blood can be used as energy or stored. In this case, it’s understandable why someone may think that insulin itself causes weight gain, when, in reality, it’s just that your body is able to use and store energy again like it normally should.

Having persistently high blood sugar can also cause severe dehydration, so people who receive treatment after their Type 1 diabetes diagnosis may also gain weight in the form of water, or rehydration.

Everyone’s body needs insulin in order to be healthy and survive. If you have Type 1 diabetes, it’s essential to take your insulin as instructed by your healthcare provider.

Who does diabulimia affect?

Diabulimia only affects people with Type 1 diabetes. A person who has Type 1 diabetes can develop diabulimia at any point after their diabetes diagnosis. Diabulimia affects both children and adults but is more common in adolescents and young adults assigned female at birth.

How common is diabulimia?

Diabulimia is fairly common in people with Type 1 diabetes (T1D), though it can range in severity and be difficult to detect and diagnose.

Up to 40% of people assigned female at birth (AFAB) and 10% of people assigned male at birth (AMAB) with T1D aged 15 to 30 take less insulin than needed in order to lose weight. Research shows that people AMAB with Type 1 diabetes are more concerned about their weight than people AMAB who don’t have diabetes.

Symptoms and Causes

What are the signs and symptoms of diabulimia?

There are several emotional, behavioral and physical signs and symptoms of diabulimia. If you or someone you know is experiencing these signs and symptoms of diabulimia, it’s important to seek help and medical treatment.

Physical signs and symptoms of diabulimia

Physical signs and symptoms of diabulimia include:

Behavioral signs and symptoms of diabulimia

Behavioral signs of diabulimia include:

  • Not giving insulin (bolusing) for meals and/or under-bolusing for meals.
  • Increasing neglect of diabetes management.
  • Secrecy about diabetes management.
  • Avoiding diabetes-related appointments.
  • Discomfort in testing blood sugar or administering insulin in front of others.
  • Infrequently filled insulin prescriptions.
  • Sleeping more than usual.

Emotional and psychological signs and symptoms of diabulimia

Emotional and psychological signs of diabulimia include:

  • Fear that insulin causes weight gain.
  • Anxiety about body image.
  • Feeling drained by diabetes management (diabetes burnout).
  • Fear of low blood sugars (hypoglycemia) due to needing to eat food to treat them.
  • Depression and/or anxiety.
  • Feeling irritable and/or having mood swings.
  • Having an obsessive interest in food, calories and dieting.

What causes diabulimia?

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

When you have Type 1 diabetes (T1D), the things you need to do to manage it can play a part in triggering diabulimia and other eating disorders, including:

  • Constant and intense focus on food, especially counting carbohydrates.
  • Having to carefully read nutrition labels.
  • Needing to track several numbers, such as blood glucose levels, A1c results and weight.
  • Needing to consume food in order to treat low blood sugar (hypoglycemia), which can lead to weight gain.
  • Feeling shame about how you manage your diabetes and/or for having a chronic illness.
  • Difficulty maintaining a healthy weight.

Several other factors could contribute to a person with Type 1 diabetes developing diabulimia, including:

  • Diabetes burnout: Diabetes burnout involves feelings of frustration and mental exhaustion related to diabetes management. It can lead to certain behaviors such as not checking your blood sugar levels as often and more frequent guessing at carbohydrate counts and insulin doses rather than calculated measuring. These behaviors can lead to elevated blood sugar levels and not enough insulin, which can lead to weight loss. Because of this, diabetes burnout could lead to purposefully restricting insulin in order to lose weight.
  • Wanting a sense of control: People with T1D may feel like they don’t have control of their body, and they may have anxiety about diabetes complications or even death. This could contribute to an increased need to control other aspects of their life, such as weight and eating.
  • Body image issues: Having a distorted self-image of your body can contribute to developing an eating disorder, including diabulimia. People with diabetes may be extra concerned about their weight and shape due to certain stigmas against people with diabetes — mainly the stigma and myth that having excess body fat directly causes diabetes.
  • A desire to lose weight: If a person with T1D wants to lose weight, they might try to restrict their insulin to lose weight (diabulimia) instead of using healthy ways to lose weight.
  • Weight gain after initial diabetes diagnosis and treatment: Leading up to a T1D diagnosis, many people experience profound and rapid weight loss since their body is essentially starving due to a lack of insulin, and they’re very dehydrated. Once they receive insulin and become healthier, they usually gain back that weight — in large part due to rehydration. Someone with T1D may not see that treatment and process as becoming healthier but instead as “insulin made me gain weight.”
  • Environment and culture: Cultures that idealize a particular body type — usually “thin” bodies — can place unnecessary pressure on people to achieve unrealistic body standards. Popular culture and images in media and advertising often link thinness to popularity, success, beauty and happiness. This may contribute to someone developing diabulimia.
  • Peer pressure: Particularly for children and adolescents, peer pressure can be a very powerful force. Experiencing teasing, bullying or ridiculing because of appearance or weight or for having diabetes can contribute to the development of diabulimia.
  • Emotional health: Perfectionism, impulsive behavior and difficult relationships can all play a role in lowering a person’s self-esteem and perceived self-worth. People with T1D often feel a lot of shame about their management. This can make them vulnerable to developing diabulimia.

It’s important to note that there’s no single path to an eating disorder or diabulimia. If you or a loved one are experiencing signs and symptoms of diabulimia and/or diabetes burnout, it’s important to seek help.

Diagnosis and Tests

How is diabulimia diagnosed?

Eating disorders in general are difficult to diagnose because they are 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 Type 1 diabetes and diabulimia since people with diabetes often fear being criticized by healthcare providers and/or their families for mismanaging their condition.

Because of this, many people with diabulimia are undiagnosed.

In general, healthcare providers and family members may suspect someone has diabulimia if they have an A1c of 9.0 or higher and have had multiple diabetes-related ketoacidosis episodes or near-DKA episodes without any other explainable cause, such as a malfunctioning insulin pump site or accidentally using expired or spoiled insulin.

However, since it can be difficult to tell the exact cause of persistent high blood sugars, in most cases, a person needs to admit that they are withholding insulin in order for their provider and family members to know that they have diabulimia.

Management and Treatment

How is diabulimia treated?

The goals of treatment for diabulimia 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 the development of diabulimia.
  • Developing long-term behavioral changes for diabetes management.

People with diabetes and people with eating disorders are more likely to have depression and/or anxiety. These conditions can further complicate diabulimia and diabetes management in general. If a person has one or both of these mental health conditions, their healthcare team will likely recommend treatment for the condition(s) as well.

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

  • Medical evaluation and/or hospitalization.
  • Psychotherapy.
  • Nutrition and/or diabetes education.
  • Medication.

Because of the physical and psychological components of diabulimia, treatment involves care from multiple types of healthcare providers, including:

  • Endocrinologists.
  • Psychologists or therapists.
  • Registered dieticians or nutritionists.
  • Certified Diabetes Educators (CDEs).

Medical evaluation and/or hospitalization

First and foremost, it’s important to make sure a person with diabulimia is medically stable. If they’re experiencing diabetes-related ketoacidosis (DKA), which is common in people with diabulimia, they’ll need treatment in a hospital for the DKA.

In severe cases of diabulimia, treatment will require hospitalization so that healthcare providers can monitor the person’s insulin dosages to be sure that they are not restricting insulin. If the person has other eating disorder behaviors, such as purging, healthcare providers can also monitor these.

Healthcare providers will likely order certain tests, such as blood tests and a urinalysis, to check for possible short- and long-term diabetes complications that can be caused by diabulimia and persistently elevated blood sugar levels.

Psychotherapy

Psychotherapy is a type of counseling that focuses on changing your problematic or unhealthy thinking (cognitive therapy) and/or behavior (behavioral therapy).

Unfortunately, there’s been very little research into the psychological treatment of eating disorders in people with Type 1 diabetes. Existing research has revealed that the following types of therapy may help treat diabulimia:

  • Cognitive behavioral therapy (CBT): This therapy’s goal is to address distorted views and attitudes about self-worth, weight and appearance and to practice behavioral modification (if “X” happens, I can do “Y” instead of “Z”).
  • Psychoeducation: This therapy involves providing education and information to those seeking or receiving mental health services, such as people diagnosed with mental health conditions or chronic health conditions. The goal of psychoeducation is to help people better understand and become accustomed to living with mental health conditions and chronic health conditions.

People with diabetes are two to three times more likely to have depression than people without diabetes. In addition, people with diabetes are 20% more likely than those without diabetes to have anxiety at some point in their life.

Because of this, psychotherapy may also help people who have diabulimia treat their depression and/or anxiety, if applicable. Exploring your feelings about having diabetes and the effect it has had on your life through therapy can also help with and prevent diabetes burnout.

Nutrition and/or diabetes management education

Depending on the person’s situation and the cause of their diabulimia, nutrition education and/or diabetes management education may be a part of treatment.

Type 1 diabetes is a very complex condition that can be difficult to manage. Having a thorough understanding of the biology of diabetes as well as new diabetes technology and management strategies could help a person with diabetes feel more confident in their management capabilities and help them better manage their condition.

Nutrition education and counseling may also be necessary if a person with diabulimia has problematic thinking or misunderstandings about certain food groups (i.e. “carbohydrates are bad”) or other disordered eating behaviors.

Prevention

Can diabulimia be prevented?

Although it might not be possible to prevent all cases of diabulimia, it’s helpful to start treatment as soon as someone begins to have symptoms.

In addition, teaching and encouraging healthy eating habits and realistic attitudes about food and body image might help prevent the development or worsening of eating disorders and diabulimia. It’s also essential to be supportive of someone’s diabetes management and to provide them with proper diabetes education and support.

Outlook / Prognosis

What is the outlook (prognosis) for people with diabulimia?

The prognosis for diabulimia varies depending on certain factors, including:

  • 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 adherence to treatment.

Diabulimia, like other eating disorders, gets worse the longer it’s left untreated. The sooner the disorder is diagnosed and treated, the better the outcome. However, people with diabulimia often won’t disclose that they’re purposefully withholding insulin and might resist treatment or refuse to follow the treatment plan.

Diabulimia is a serious and potentially life-threatening eating disorder if it’s left untreated. People with diabetes tend to have a somewhat shorter lifespan than people without diabetes, but people with diabulimia are at risk of dying much earlier than people with diabetes alone. One study found that people with diabulimia died an average of 13 years earlier than people with only diabetes.

The good news is that diabulimia can be treated, and someone with diabulimia can return to healthy diabetes management practices and a healthy weight. Support of family members and friends can help ensure that a person with diabulimia receives and adheres to their needed treatment.

What are the complications of diabulimia?

Diabulimia is a serious health condition that can have severe short-term and long-term complications.

Short-term complications and side effects of diabulimia

Several of the short-term complications and side effects of diabulimia are associated with persistently high blood sugar. Short-term complications of diabulimia include:

  • Diabetes-related ketoacidosis (DKA): Diabetes-related ketoacidosis is an acute life-threatening condition that occurs when your body doesn’t have enough insulin. Insulin is needed to turn glucose, the body’s normal source of fuel, into energy. If there is no insulin or not enough insulin, your body starts breaking down fat for energy instead. As fat is broken down, ketones are released into the bloodstream. For a person with diabetes, a high amount of ketones causes their blood to become acidic (the blood pH is too low). This creates an emergency medical situation that requires immediate attention and treatment.
  • Severe dehydration: A lack of insulin can lead to a buildup of ketones in your bloodstream, which can turn your blood acidic. In an attempt to get rid of the excess ketones through your urine, your body ends up getting rid of too much fluid. This can cause severe dehydration.
  • Slow wound healing: Having constant elevated high blood sugar causes poor circulation, decreases the function of your immune system and damages small blood vessels. All of these factors can delay wound healing and can sometimes progress into complications such as an ulcer in a person with diabetes.
  • Staph and other bacterial infections: Having constant high blood sugar causes your body to produce certain enzymes and hormones that negatively affect your immune system, which makes you more susceptible to developing infections. This risk of infection in addition to slowed wound healing increases your risk of developing gangrene, sepsis or a bone infection.
  • Yeast infections: Excess sugar in your blood makes it easier for yeast to overgrow. This often happens in the vaginal area.
  • Loss of muscle mass (muscle atrophy): Without enough insulin, your body can’t utilize the energy from the food you eat. Because of this, your body begins to break down muscle tissue for fuel.

Long-term complications of diabulimia

Long-term complications of diabulimia are the same as the possible long-term complications of diabetes. However, people who have diabulimia may experience these complications sooner due to having continuously elevated blood sugar levels. Some people with diabetes may never experience complications of diabetes if their condition is well-managed.

Long-term complications of diabulimia include:

  • Diabetes-related retinopathy: This is caused by damage to the blood vessels in the tissue at the back of your eye (retina) caused by persistently elevated blood sugar levels. It causes small black spots or “floaters,” which disrupt your vision. Persistent or recurrent retinopathy can eventually lead to blindness.
  • Peripheral neuropathy: Peripheral neuropathy is damage to one or more nerves outside of your central nervous system — your brain and spinal cord. It results in numbness, tingling, muscle weakness and pain, usually starting in your hands and feet.
  • Gastroparesis: Gastroparesis is a condition in which your stomach can’t empty itself of food in a normal fashion. It's caused by nerve injury, including damage to the vagus nerve. Continuously elevated blood sugar levels can damage the vagus nerve.
  • Cardiovascular disease: Continuously elevated blood sugar levels can damage your blood vessels and heart, which can lead to various cardiovascular diseases.
  • Kidney disease: Continuously elevated blood sugar levels make your kidneys work extra hard, which causes damage to your kidneys’ filtering system. This can lead to kidney disease.
  • Liver disease: Insulin deficiency can lead to non-alcoholic fatter liver disease, a condition in which too much fat accumulates in your liver, causing inflammation.

Living With

When should I see my healthcare provider about diabulimia?

If you or a loved one are experiencing signs and symptoms of diabulimia, be sure to talk to a healthcare provider as soon as possible.

When should a person with diabulimia go to the emergency room?

If you or a loved one experiences signs and symptoms of diabetes-related ketoacidosis (DKA), such as frequent vomiting and labored breathing, go to the emergency room as soon as possible.

How do I take care of myself if I have diabulimia?

It can be uncomfortable and scary, but it’s important to tell a loved one and/or your healthcare provider if you have diabulimia.

If you have already been diagnosed with diabulimia, there are some things you can do to manage your condition and stay committed to recovery, including:

  • Taking your prescribed insulin doses regularly.
  • If you take other prescribed medication, be sure to take it regularly and do not miss doses.
  • If you are participating in talk therapy to treat your diabulimia, be sure to see your therapist regularly.
  • Don’t abuse alcohol or drugs.
  • Reach out to family and friends for support.
  • Consider joining a support group for people who have diabetes and/or diabulimia.
  • See your healthcare provider regularly.

How can I care for and support a loved one who has diabulimia?

There are multiple things you can do to help and support someone with diabetes and diabulimia, including:

  • Learn about Type 1 diabetes and diabulimia: Educate yourself about diabulimia and the ins and outs of diabetes to better understand what they are going through. Don’t assume you know what they are experiencing.
  • Be empathetic: Don’t downplay or dismiss their feelings and experiences. Let them know that you are there to listen and support them. Try to put yourself in their shoes. Don’t shame them for mismanaging their diabetes.
  • Encourage them to seek help and/or treatment: While having an understanding and supportive friend or family member is helpful to a person with diabulimia, anorexia is a medical and mental health condition. Because of this, people with diabulimia need treatment, such as therapy and medical intervention to manage their condition. Encourage them to talk to their healthcare provider if they are experiencing the signs and symptoms of diabulimia
  • Be patient: It can take a while for someone with diabulimia to fully stop withholding insulin once they’ve started treatment. Know that Type 1 diabetes is a demanding and complex condition and that their behaviors and management will eventually improve with treatment and support.

A note from Cleveland Clinic

Diabulimia is a serious and potentially life-threatening condition, so it’s important to seek help as soon as you or a loved one are showing signs of it. Type 1 diabetes is a complex condition that can be difficult and daunting to manage. Know that you are not alone — everybody with diabetes has their ups and downs. It’s ok to ask for help. Your healthcare providers and your loved ones are there to support you.

Last reviewed by a Cleveland Clinic medical professional on 03/31/2022.

References

  • Beyond Type 1. What is Diabulimia?. (https://beyondtype1.org/the-truth-about-diabulimia/) Accessed 3/31/2022.
  • Diabetes UK. Diabulima and Diabetes. (https://www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/diabulimia) Accessed 3/31/2022.
  • National Eating Disorders Association. Diabulimia. (https://www.nationaleatingdisorders.org/diabulimia-5) Accessed 3/31/2022.
  • Winston AP. Eating Disorders and Diabetes. (https://pubmed.ncbi.nlm.nih.gov/32537669/) Curr Diab Rep. 2020; 20(8): 32. Accessed 3/31/2022.

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