Although not a medically recognised condition, ‘Diabulimia’ is a term used to describe the dual presentation of Type 1 diabetes and an eating disorder in which insulin is omitted or restricted in order to control weight. Type 1 diabetes demands optimal control of a variety of metabolic measures, most notably blood glucose. The wide ranging and devastating consequences of long-term poor glycaemic control make it essential that diabetes healthcare teams are aware of the potential for disordered eating in conjunction with a preoccupation with weight and negative body image so that it can be recognised and treated early.
What is diabulimia?
Diabulimia relates specifically to insulin omission or restriction and does not include all aspects of disordered eating. It results in the purging of calories through glycosuria and is the most favoured means of weight control in people with Type 1 diabetes . Insulin omission is included in the purging behaviours listed for a diagnosis of bulimia and OSFED (Other Specified Feeding or Eating Disorder) (formerly EDNOS). The deliberate omission of insulin results in severe hyperglycaemia, frequent hospital admissions with diabetic ketoacidosis (DKA), earlier onset of complications, and premature death. An 11 year follow-up study indicated mortality associated with insulin restriction appeared to occur in the context of eating disorder symptoms rather than other psychological distress such as anxiety, depression, fear of hypoglycaemia and diabetes-distress. Prolonged insulin reduction or omission has been shown to be associatied with retinopathy and nephropathy.
It is expected that eating disorders in the general population are under reported because people feel shame and embarrassment for engaging in maladaptive weight control practices. NICE data suggest 11% of the 1.6 million people with eating disorders in the UK are male whereas the Adult Morbidity Survey 2007 suggests that a quarter of the 6.4% of adults, who display signs of an eating disorder, are male. Approximately half of all recorded eating disorders fall into the group OSFED. There are few data on the prevalence of ‘diabulimia’ and while the numbers are not great they represent a significant proportion of people with Type 1 diabetes. Prevalence data for those who report insulin misuse to control weight range from 14-36% although it is often unrecognised and therefore not addressed. Reports vary from 1.4% of men to 10.3% of women and between 7% and 10% of an adolescent cohort. High frequencies of insulin reduction or omission were reported by Jones and colleagues who suggested that the rates of eating disorders in adolescent females may be as high as 30%.
The risk factors for developing an eating disorder in the general population apply equally to people with diabetes and include being a young female, a history of dietary restraint and dieting, weight gain, low self-esteem and family dysfunction. These risks are intensified by type 1 diabetes because the foundation stone for successful management of the condition is a focus on food. People with Type 1 diabetes report a high level of body dissatisfaction together with risk factors for eating disorder development. In a study of 189 people with T1DM, all those who reported omitting insulin were female, and the risk of an Eating Disorder was reported to be 9 times higher in these patients. They used self-report screening measures which tend to display a higher frequency of disorder than clinical diagnostic means. High levels of body dissatisfaction are associated with unhealthy weight control practices.
Recognising the problem
Diabetes-specific clinical characteristics associated with the presence of disordered eating and diagnosable eating disorders include unexplained fluctuations in blood glucose, frequent DKA, improved control only when in hospital, refusal to let others observe injections and anxiety about being overweight.
Diabulimia is associated with feelings of shame and embarrassment, negative body image, low self-esteem, depression and anxiety. People are reluctant to disclose the problem and so it is important to have a high index of suspicion in the context of the above symptoms and regular screening should be an integral part of diabetes care. To date, there is only one diabetes-specific measure of disordered eating, the Revised 16-item Diabetes Eating Problem Survey, that incorporates questions about weight concerns, eating patterns, control and purging, including self-induced vomiting and maladaptive insulin use. Questionnaires that are designed for use by the general population may result in a false positive diagnosis for an eating disorder because specific adaptive behaviours for optimising glycaemic control are not taken into account and may be interpreted as symptomatic of dysfunction.
Early identification of insulin restriction or omission will enhance the treatment outcome. A full assessment of eating behaviours will tease out whether the reason for insulin restriction is related to weight concerns or alternatively as a means of coping with diabetes-specific distress, needle anxiety or generic psychological problems. A detailed understanding of health beliefs, predisposing and perpetuating factors is essential before embarking on a treatment intervention. Insulin omission to avoid hypoglycaemia will require different treatment to that of insulin omission linked to body image concerns and weight control.
Evidence based psychological therapies in the context of a multidisciplinary team are the broad recommendation for the treatment of eating disorders. There are no specific guidelines for the treatment of diabetes and disordered eating; however, the default position for the treatment of people presenting with two complex conditions is a multidisciplinary team approach integrating knowledge of both diabetes and eating disorders. The initial priorities of treatment are to stabilise eating and eliminate any purging behaviour, in this instance, insulin omission or restriction. The weight gain consequent upon improved glycaemic control is a risk for relapse and needs to be anticipated early in therapy. The choice of psychological therapy is determined by the assessment and formulation.
Use of the term ‘Diabulimia’
Diabulimia is used predominately by the media, although its use is becoming more prevalent in academic literature. There has been some controversy about the use of the term because it appears to exclude other eating disorders that occur in people with diabetes (anorexia, bulimia and binge eating disorder). As people with type 1 diabetes can present with any eating disorder, not just insulin omission, it has been suggested that this dual presentation is described as ED-DMT1 as it is more representative.
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^ NICE. CG9: Eating disorders: Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders. http://publications.nice.org.uk/eating-disorders-cg9