Diabetes and eating disorders: Insulin omission and the DSM-5

The fact that eating disorders are more prevalent in young women with type 1 diabetes has been well documented (Affenito et al, 1997; Rodin et al, 1986; Rydall et al, 1997; Pinar, 2005). The omission of insulin in order to promote weight loss is much less understood and researched, however. This article describes the current clinical picture of diabetes-associated eating disorders and outlines the work of the charity Diabetics with Eating Disorders (DWED), which was established to support individuals with the condition.

Defining insulin omission
The practice of insulin omission for weight loss purposes is commonly named diabulimia; however, it should be noted that this is a label given by the media. Among some academics, the nomenclature eating disorders in diabetes mellitus type 1 (ED-DMT1) is used to denote the spectrum of disturbed eating behaviour found within this specific demographic.

Insulin omission as a DSM diagnostic category
Unlike anorexia, bulimia and binge eating disorder, insulin omission is not named as a mental health condition in its own right in the Diagnostic and Statistical Manual of Mental Disorders (DSM). Instead, insulin omission appeared in the DSM-IV subsumed under the criteria for bulimia (American Psychiatric Association, 2000):

“Individuals with diabetes mellitus and bulimia nervosa may omit or reduce insulin doses in order to reduce the metabolism of food consumed during eating binges.”

This reference has been built upon only slightly in the recently published DSM-5 by the additional inclusion of insulin omission under the criteria for anorexia nervosa (American Psychiatric Association, 2013):

“Individuals with anorexia nervosa may misuse medications, such as by manipulating dosage, in order to achieve weight loss or avoid weight gain. Individuals with diabetes mellitus may omit or reduce insulin doses in order to minimize carbohydrate metabolism.”

Although another mention of insulin omission as clinically relevant is a welcome addition to the DSM-5, the position of DWED is that the failure to identify chronic insulin omission as a mental health condition in its own right is problematic. Under these diagnostic criteria, one may ask: “what is the difference between people with diabetes and anorexia and those with diabetes and bulimia?” Simply put, the answer is weight; however, determining eating disorder severity by weight is not relevant to people with type 1 diabetes who omit insulin. The measure of severity for this demographic would more accurately be HbA_1c. Furthermore, these diagnostic criteria propagate the idea that one simply has anorexia or bulimia with diabetes as a footnote. We know that there are diabetes-specific environmental factors that contribute to the development of diabulimia and, perhaps more importantly, that eating disorder treatment programmes that do not address the diabetes-related factors fail abjectly (Rodin et al, 1991; Smith et al, 2008; Ismail et al, 2010).

A treatment model that works
Currently, individuals who are identified as omitting insulin are usually referred to their local eating disorder service. The difficulty is that eating disorder professionals are not experts in diabetes or the psychological implications of diabulimia, often seeing the problem as one of food alone rather than one of food, insulin and all the other stresses of the diabetes regimen. This leads to inappropriate use of NHS resources and, therefore, increased costs, not only in the initial ineffective treatment, but also in the costs of dealing with people with seriously uncontrolled diabetes over the long term. There is also an impact on the individuals themselves, which include failure to maintain employment, reliance on benefits, deterioration in mental wellbeing and relationships and, at its worst, death.

A person with type 1 diabetes who has an eating disorder, particularly insulin omission, cannot be dealt with in isolation by an eating disorder team. What DWED has observed to be effective is the patients’ DSNs being proactive in collaborating with both the individuals and their eating disorder teams to guide and educate them as to how diabetes can be managed whilst the eating disorder is being treated. A multidisciplinary approach is the only effective way to treat a person with type 1 diabetes and an eating disorder. Hopefully, the next revision of the DSM will differentiate diabulimia and reflect the need for this approach; certainly, DWED is working hard to raise awareness of the condition and establish treatment protocols that are effective. A large part of the work that DWED is undertaking involves training both diabetes teams and eating disorder teams in the best ways to support their patients with eating disorders.

Further information
Diabetics with Eating Disorders (DWED) is a Registered Charity in Scotland that was set up in April 2009 by Jacqueline Allan following the death of a close friend. The organisation has grown from a grassroots support service to a well-established body involved in campaigning, training, raising awareness and advocacy. The trustee board consists of recognisable names in the fields of diabetes (Dr Stephen Thomas, Dr Miranda Rosenthal, Dr Jen Nash and Nicola Allen, DSN) and eating disorders (Prof Janet Treasure, OBE), as well as former patients and carers. DWED regularly advises and trains healthcare bodies (such as the Institute of Psychiatry, Royal College of Physicians and Royal College of Nursing), the UK Parliament, the Scottish Parliament, charities (such as Diabetes UK, the Juvenile Diabetes Research Foundation and Beat) and private clinics on eating disorders in type 1 diabetes. They have also been involved in the development of several intervention programmes, have delivered lectures internationally and are currently involved with bodies such as Healthwatch, NICE, Strategic Clinical Networks and NHS England and NHS London. To find out more about DWED, or to discuss how they can work with your team, please visit www.dwed.org.uk or email info@dwed.org.uk.