Chief dietitian at Tara Hospital, Eliana Dawood, explores the co-occurrence of Type 1 diabetes and eating disorders: diabulimia.
What is diabulimia?
Diabulimia is a term which developed in the public and in the media to describe the diagnosis of an eating disorder in a person with Type 1 diabetes which is also known as Eating Disorder – Diabetes Mellitus Type 1, (ED-DMT1).
Diabulimia is not an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, edition 5, (DSM-5). It specifically describes a disordered eating behaviour where a person reduces or omits insulin to lose weight.
What is diabetes?
Let us remind ourselves of what diabetes means. When a person eats carbohydrates, this food gets broken down into glucose. Every single cell in the body gets its energy from glucose. The pancreas produces insulin which helps the glucose move out of the bloodstream and pass into the body cells where it gets used for energy.
Without insulin, the glucose can’t move into the cells and remains in the bloodstream, causing high blood glucose levels. If this continues over time the body’s cells become starved and the body begins to break down fat and muscle tissue to supply the body with glucose. This process produces ketones as a by-product which causes the blood to become acidic. This is known as diabetic ketoacidosis (DKA), which requires hospitalisation and it can lead to seizures, coma and death if left untreated.
Eating disorders in those with diabetes
Any person with diabetes whether Type 1 or Type 2 can develop any of the classified eating disorders. The term diabulimia doesn’t necessarily describe all types of eating disorders which may arise in those with diabetes.
People with diabetes can engage in any number of eating disorder behaviours or they may have relatively normal eating behaviours and only omit their insulin.
Eating disorders in Type 1
Eating disorders in people with Type 1 diabetes increase the risk of DKA as well as medical complications related to diabetes (especially retinopathy and neuropathy) and are linked to higher rates of hospital and emergency room visits.
Prevalence of ED-DMT1
The prevalence of ED-DMT1 in various studies has been reported as follows:
- It’s estimated that disordered eating or eating disorders, including insulin omission has been reported in up to 30% of people with DMT1.
- Women with Type 1 diabetes mellitus (DMT1) are 2,4 times at a greater risk of developing an eating disorder than non-diabetic women.
- Approximately one in three female and one in six male patients with DMT1 reported disordered eating and/or frequent insulin restriction.
Who develops an eating disorder and how does this occur?
Type 1 diabetes often starts in childhood or early adulthood. Adolescence is a period of transition and life changes which can be particularly difficult to navigate and may increase vulnerability to the development of an eating disorder.
In addition, the recommended management of Type 1 diabetes can make a person more vulnerable to an eating disorder. Extra attention and emphasis is placed on meal planning, portion size, carbohydrate counting, label reading, exercise and weight. The sense of intensely strict rigidity and the hyper-focus on control and numbers can result in a blurring of the fine line between managing your diabetes well and developing an obsession.
Despite these attempts at tight blood glucose control, the body is a complex organism and even “optimal” management can lead to high and low blood glucose levels.
In a society rooted in diet culture, the obsession with weight-loss can present a great temptation to skip insulin as a sure-fire way to lose weight. This is particularly appealing to a patient population that is often diagnosed with Type 1 diabetes between childhood and adolescence.
Additional contributory factors include perfectionistic character traits, dietary restraint and a feeling of constant deprivation, pressure and burnout from constant vigilance, and potential shame from judgement by doctors and peers based on these numbers.
It’s easy to see how a person can go on to develop low self-esteem, poor body image, strange food rules, food fears or compulsions considering the above context.
Both disordered eating and insulin restriction should be considered in T1D care irrespective of sex, age at onset, and diabetes duration.
Insulin restriction is associated with increased rates of diabetes complications and increased mortality risk. Mortality associated with insulin restriction appears to occur in the context of eating disorder symptoms, rather than other psychological distress. Anorexia nervosa and Type 1 diabetes together have a 38% mortality rate which is five times greater than anorexia nervosa on its own.
People with ED-DMT1 who are medically or psychiatrically unstable require in-patient treatment. Hospitalisation for DKA and medical stability is the most immediate concern as the immediate goals of in-patient care are stabilisation of blood glucose levels and establishment of regular eating patterns.
It’s crucial for the person to have a multi-disciplinary team who understands both diabetes and eating disorders in approaching their treatment. This would include a doctor, endocrinologist, certified diabetes educator, registered nurse (specialising in diabetes), and a psychiatrist, dietitian, therapist/clinical psychologist and social worker (specialising in eating disorders) who communicate regularly in working towards a common goal.
Professionals possessing both these skill sets are particularly difficult to find. At a minimum, these professionals should have eating disorder experience, a willingness to learn from one another and to work collaboratively with the patient.
Medical and psychiatric assessment and interventions should have a specialised focus on ED-DMT1. Psychosocial interventions often combine enhanced cognitive behavioural therapy for treating eating disorders (CBT-E), Dialectic Behavioural Therapy (DBT) and family-based therapy (FBT) to address the behavioural issues associated with ED-DMT1.
Treatment for patients with ED and T1DM should consider the individual’s personality and role of insulin abuse when determining the appropriate intervention.
There is a higher incidence of mood disorders, particularly depression and anxiety in both men and women with diabetes. Management of co-morbid psychiatric conditions may form an integral part of relapse prevention because if left untreated they may contribute to the dysfunction and distress that can lead to relapse.
Relapse prevention is a crucial aspect of eating disorders treatment and should be included in all phases of treatment. Ultimately, treatment in this patient population should be geared towards assisting patients to have good enough diabetes control vs perfect diabetes control.
Resources for you:
Book: Prevention and Recovery From Eating Disorders in Type 1 Diabetes: Injecting Hope by Ann-Goebel-Fabbri
- Position statement: Diabulimia. Diabetes UK. March 2017
- Sick enough: A guide to the medical complications of eating disorders. Gaudiani JL.2019
- Bermudez O, Gallivan H, Jahraus J, Lessser J, Meier M, Parkin C. Inpatient management of eating disorders in type 1 diabetes. Diabetes Spectrum 2009; 22(3): 153-158 doi:10.2337/diaspect.22.3.153.
- Bächle C, Stahl-Pehe A, Rosenbauer J. Disordered eating and insulin restriction in youths receiving intensified insulin treatment: Results from a nationwide population-based study. Int J Eat Disord. 2016 Feb; 49(2): 191-6
- Atkinson, M. A., Eisenbarth, G. S., and Michels, A. W. (2014). Type 1 diabetes. Lancet383, 69–82. doi: 10.1016/S0140-6736(13)60591-7
- Custal N, Arcelus J, Agüera Z, Bove FI, Wales J, Granero R, Jiménez-Murcia S, Sánchez I, Riesco N, Alonso P, Crespo JM, Virgili N, Menchón JM, Fernandez-Aranda F. Treatment outcome of patients with comorbid type 1 diabetes and eating disorders. BMC Psychiatry. 2014 May 16;[14:14]0
- Wisting, L., Frøisland, D. H., Skrivarhaug, T., Dahl-Jørgensen, K., and Rø, Ø (2013). Disturbed eating behavior and omission of insulin in adolescents receiving intensified insulin treatment: a nationwide population-based study. Diabetes Care36, 3382–3387. doi: 10.2337/dc13-0431
- Goebel-Fabbri A, Fikkan J, Franko D, Pearson K, Anderson B, Weinger K. Insulin Restriction and Associated Morbidity and Mortality in Women with Type 1 Diabetes. Diabetes Care (2007).