Diabulimia

What is diabulimia?

Diabulimia, also referred to as eating disorder-diabetes mellitus type 1 (ED-DMT1), is not an official diagnosis according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) ^[1], but is a term used to describe an eating disorder within the context of diabetes mellitus type 1. Diabulimia refers to the restriction of insulin in those with type 1 diabetes, as a weight loss technique ^[2].

People with diabetes mellitus type 1 need insulin medication to stay healthy, as their bodies do not produce enough insulin naturally, so are not capable of regulating blood sugar levels. A lack of insulin can result in an excess of blood sugar in the body, known as hyperglycemia, which can have serious or fatal effects, including diabetic ketoacidosis, kidney damage, and loss of eyesight ^[3].

During ketoacidosis, blood sugar that would usually be absorbed into the body instead builds up to a dangerously high level due to a lack of insulin, causing the body to attempt to remove it. This results in frequent urination as the body tries to decrease blood sugar levels, meaning that any calories taken into the body are excreted in urine ^[4].

As the body needs these calories to function, it instead uses muscle fat for energy, resulting in rapid weight loss. As such, some people with type 1 diabetes intentionally stop their insulin injections, as a way of quickly losing weight. This is known as diabulimia and is a serious and potentially fatal eating disorder ^[5].

The term diabulimia comes from a fusion of the words diabetes and bulimia, but it should not be confused with bulimia nervosa, which is an eating disorder in which people binge eat and then purge their food in order to lose weight. 

Symptoms of diabulimia

Symptoms of diabulimia may vary from person to person, but typically include ^[6][7]:

Behavioral symptoms

• Testing blood sugars in secret, to prevent others from seeing results
• Injecting insulin in secret and hiding insulin injections, so others are not aware of amounts being used
• Commenting about being fat or unhappy with appearance, or being afraid of insulin causing weight gain
• Changes in diet, including eating less, binge eating, or avoiding specific foods
• Eating alone or secretly and avoiding social situations involving food
• Neglecting health in relation to diabetes, such as not checking sugar and carbohydrate content of food or not checking blood sugar levels regularly
• Not attending appointments with doctors for health check-ups
• Counting calories, dieting, fasting, or excessive exercising
• Social withdrawal and isolation
• Mental health changes, such as anxiety, depression, or agitation

Physical symptoms

• Weight loss
• Regular vomiting
• Feeling thirsty all the time
• Frequent urination
• Consistently high blood sugar levels
• Regular ketoacidosis
• Pain in kidneys or when urinating
• Irregular menstruation
• Change in vision
• Feeling very tired
• Low electrolytes

Causes of diabulimia

Intense focus on food

People with a diagnosis of diabetes are required to think about food much more intensely than those without, as they have to closely monitor and regulate their intake of carbohydrates and sugar to prevent hypoglycemia and hyperglycemia. This intense focus on food can sometimes result in disordered eating or compulsive behaviors around weight management ^[2][8].

Avoidance of diabetes diagnosis

Similarly, people with diabetes may become overwhelmed by the restrictions and requirements created by their diagnosis, which can sometimes result in an avoidance of health maintenance as a way of escaping. This may mean that they ignore any advice about food intake or that they purposefully avoid taking insulin, potentially resulting in diabulimia ^[5].

Prior weight loss

Many people experience rapid weight loss caused by hyperglycemia before getting a diagnosis. Once they begin treatment, this weight is quickly regained, which can cause distress and poor body image, resulting in attempts to lose weight. As their prior experiences have shown that hyperglycemia causes weight loss, they may attempt to recreate this by restricting insulin ^[2][8].

Weight gain through treatment of hypos

Hypoglycemia (hypos) refers to low blood sugar levels and can occur due to changes in diet, environment, or natural changes in the body, causing weakness and potentially serious consequences ^[9].

To treat hypos, people with diabetes need to quickly consume something with a high sugar content to raise their blood sugar level, which can result in weight gain, particularly if this happens regularly. Due to our society’s emphasis on diet culture, the thin ideal, and unrealistic body standards, weight gain can result in feelings of low self-esteem and poor body image, some people attempt to lose this weight, and may experience diabulimia symptoms ^[2].

Mental health

Many people with an eating disorder also experience mental health problems, such as anxiety, depression, and low self-esteem ^[10]. People with diabetes and disordered eating may also experience these conditions, which can cause low self-esteem, poor body image, and a desire to lose weight, which can be achieved through insulin restriction.

Some people may also utilize this technique as a form of self-harm, knowing that restricting their insulin can result in physical consequences, as a response to emotion dysregulation or as a form of self-punishment ^[5].

Bullying

As mentioned, people with diabetes may experience weight gain at the start of their treatment or as a result of treating hypos and may experience bullying or critical comments about their weight from family members or at school or work ^[5][11]. This can contribute to a desire to lose weight quickly, to prevent further bullying and criticism, which may result in diabulimia.

Diagnosing diabulimia

People with diabulimia may not approach a professional for help, as they may attempt to keep their condition hidden to maintain regular weight loss. As such, a diagnosis of diabulimia might only occur if a friend or family member becomes concerned due to their loved one needing to attend hospital for ketoacidosis regularly, or noticing changes in food or water consumption, or weight.

Similarly, a doctor may notice missed appointments, irregularities in blood sugar levels upon testing, or unfilled prescriptions, prompting a requirement for tests and potential diagnosis. Doctors can test hemoglobin A1C (HbA1C), which gives an average blood sugar level over the previous three months, to ascertain whether levels have remained healthy or are consistently high ^[12].

They will also check weight and vision, ask about levels of water consumption, urine output, and eating habits, and potentially utilize a medical questionnaire such as the Eating Disorder Examination to discuss feelings about body image, weight, and food ^[5].

If the information they have gathered presents concerns that insulin is being restricted for weight loss and an eating disorder is present, the doctor will likely make a referral to an eating disorder or mental health specialist to provide further treatment ^[2].

Treatment for diabulimia

Diabulimia is a complex condition with various aspects involved, so treatment will require a multidisciplinary approach, involving specialists in diabetes, eating disorders, and mental health ^[6]. The underlying cause of the eating disorder may vary from person to person, so will require specialist support in managing and treating mental and physical symptoms.

Developing safe and healthy eating behaviors to manage weight, rather than restricting insulin, may require a combination of advice from specialists in diabetes, eating disorders, and nutrition. This team can provide information and guidance, potentially creating a meal plan that manages and applies to all needs, without neglecting specific health requirements ^[2][8].

Physical intervention may be required if serious physical health complications occur, such as severe dehydration, infections, or organ damage ^[4].

Psychological intervention may also form part of the treatment plan, such as cognitive behavioral therapy (CBT), which can focus on managing underlying emotions, providing problem-solving and coping techniques, and helping to form more positive behaviors around eating and diabetes management ^[5][11].

Self-care for diabulimia

If you have diabulimia, you can manage your condition by ^[1][5]:

• Managing well-being: consult with your interdisciplinary treatment team to come up with an approach specific to both your physical and emotional needs.
• Consulting professionals: due to the complexity of diabulimia, it can be challenging or daunting asking for professional support, but your doctor can help by referring you to the appropriate people, so that you feel adequately supported in managing all aspects of your physical and mental health.
• Asking for help: speaking with family and friends about your condition can help to reduce feelings of guilt, shame, or burden, and asking for practical help can make it easier to manage some of the requirements involved with managing diabetes.
• Attending support groups: it can be helpful to attend support groups with others who also have diabulimia, as it can help to reduce negative feelings, provide an opportunity to share and discuss experiences, and increase understanding and acceptance of your condition.
• Learning triggers: by better understanding your triggers, you can learn how to utilize coping strategies and avoid or manage challenging situations that may worsen your symptoms.
• Refraining from weight checking: people with diabulimia might compulsively check their weight on a regular basis, which can reinforce negative feelings around weight, so it is advised to limit weight checking to a maximum of once per week.

Helping someone with diabulimia

If someone you know has diabulimia, you can help them by ^[5][7]:

• Beginning conversations around food: it can be difficult to appropriately voice your concerns with someone who has an eating disorder, as they may prefer to keep the details secret or find it uncomfortable to talk about, but beginning the conversation by asking if they want to talk can open up the possibility of discussions around recovery in a safe and supportive way. It is advisable to not have these conversations around mealtimes, since food is an emotional subject and may prevent your concern from getting across.
• Offering to help: it may be that they are becoming overwhelmed with managing the day-to-day requirements of living with diabetes, struggle with injecting, or feel confused by what they should be eating, so offering your help could alleviate some of their anxieties and challenges.
• Attending family therapy: family therapy could provide an opportunity to openly discuss your or their concerns and experiences, provide better understanding and acceptance of the condition, and provide further support for both you and your loved one.
• Seeking your own support: it can be challenging to support someone with diabulimia, and you may feel overwhelmed or confused about how best to provide this support, so you may wish to attend your own support groups or therapy, to provide you with the tools and support you require.

Frequently asked questions about diabulimia

What are the complications of diabulimia?

Untreated diabulimia can lead to severe and even fatal consequences, such as ^[4][6]:

• Infections
• Impaired wound healing
• Hormonal and menstrual problems
• Severe dehydration
• Loss of vision
• Muscular pain and weakness
• Fainting
• Stomach upset, such as vomiting, diarrhea, and constipation
• Kidney disease
• Heart disease
• Liver disease
• Coma
• Stroke
• Death

How common is diabulimia?

Research suggests that up to one third of people with type 1 diabetes experience diabulimia ^[2]. Eating disorders are believed to be twice as prevalent in those with type 1 diabetes than the general population ^[5].