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Treating patients with a dual diagnosis of Type 1 Diabetes and an Eating Disorder is challenging, but can be rewarding too. DEDA has collected some resources to aid in the detection, treatment and management of this dual diagnosis

overview

how to help

patient perspectives

resources

overview of eating disorders in diabetes

about eating disorders in diabetes
  • Individuals with type 1 diabetes mellitus (T1DM) are at a higher risk for developing eating disorders compared to the general population 1, 2, 3
  • OSFED/EDNOS and Bulimia Nervosa are the most common eating disorders in T1DM, but individuals may also have Binge Eating Disorder or Anorexia Nervosa 2,3 
  • Females with T1DM are at least twice as likely to develop a clinical eating disorder compared to their non-diabetic peers, and an even greater percentage are at risk for developing a sub-clinical eating disorder 1, 4
  • The practice of insulin omission for weight control is the most common purging behaviour unique to those with T1DM 2, 5
  • Although diabulimia or ED-DMT1 (Eating Disorders, Diabetes Mellitus Type 1) are not currently official diagnostic terms, this terminology is commonly used in the literature and within the community to mean the omission of insulin for the purpose of weight loss 2, 5
  • Between 20-40% of young females with T1D are estimated to misuse insulin for the purpose of weight control 3, 5, 6, 7
  • John Buse, president of the medicine and scientific division of the board of American Diabetes Association stated “Most, if not all women with T1DM are aware of this practice [insulin omission] and there is probably a substantial number who have engaged in it to varying degrees, some to lose a few pounds before an important event, others who practice it so repeatedly they experience devastating medical consequences” 8
causes and contributing factors
  • The peak onset of T1DM is 10-12 years old 9. This is a period in which girls particularly are vulnerable to the physical, psychological and social challenges associated with puberty 1
  • The diagnosis of T1DM can be a stressful time and lead to changes in family dynamic and everyday living. Attention is centred around nutrition, counting carbohydrates, exercise and rigorous focus on trying to achieve optimal glycaemic control 1, 7, 9, 10
  • Initial weight loss at the time of diabetes onset is followed with subsequent weight gain due to the initiation of insulin therapy 1, 7, 10
  • Tight glycaemic control has been linked to a heavier body weight and consequently greater body image dissatisfaction 7
  • Predisposing factors associated with the development of an eating disorder include higher body mass index (BMI), low self-esteem, poorer diet quality, body dissatisfaction, perfectionism 7
  • Treating hypoglycaemic episodes can cause increased food intake, and therefore can be associated with increased weight gain or feelings of guilt in people with diabetes. Hypoglycaemia can promote polyphagia 7, 9, 10
  • Diabetes interferes with amylin production and ghrelin regulation, both of which are linked to increased satiety 10
  • Initiation of pump therapy can intensify the focus on eating behaviours and give the individual more flexibility in manipulating their insulin doses 10
  • Feelings of guilt and depression are common in people with diabetes 10
signs and symptoms
  • Recognising, diagnosing, and treating disordered eating and EDs in T1DM may be life-saving and prolonging in a condition whereby management is largely reliant on behavioural adherence 1
  • A high index of suspicion is required for accurate diagnosis, as eating disorders are often secretive in nature 1 

Signs and symptoms specific to diabetes may include:

  • Poor metabolic control – elevated HbA1c, recurrent DKA, unexplained hypoglycaemia or hyperglycaemia 1, 5, 7
  • Frequent hospital admissions 1, 5, 7
  • Missed clinical visits 1, 5, 7
  • Weight fluctuations, anxiety over being weighed, evidence of vomiting, lanugo, amenorrhoea, pre-occupation with food and weight 5, 7
  • Early onset or acceleration of diabetes complications 1
  • Any signs and symptoms of Anorexia, Bulimia, OSFED/EDNOS, or Binge Eating Disorder 1
complications
  •  Morbidity and mortality rates are at a three-fold increase for individuals with T1DM who restrict their insulin on a regular basis 2, 4.
  • Compared to other eating disorders, the damage diabulimia can cause escalates much more quickly 2

            Acute and chronic complications individuals with T1DM may face include 1, 7, 8:

  • Hyperglycaemia – may be prolonged and/or severe in the case of insulin omission
  • Hypoglycaemia – may be recurring or severe in the case of food restriction
  • Diabetic Ketoacidosis (DKA)
  • Retinopathy
  • Neuropathy
  • Nephropathy
  • Cardiovascular disease
  • Gastroparesis
  • Stroke
  • Increased and slow-healing infections
  • Death
  • This is in addition to any complications from anorexia, bulimia, OSFED/EDNOS, or binge eating disorder 2

how to help

Management of eating disorders in type 1 diabetes is challenging given the complexities of both conditions and their interplaying factors 1. Health professionals working with young people with diabetes need to stay up to date with developments in the field of eating disorders. The following management tips may be helpful in detecting, treating, and supporting the patient with this dual diagnosis:

  • Early detection and intervention is vital and may be life-saving 1. Regular screening for eating disorders is recommended in high risk populations 1,4
  • A low threshold for referral to Mental Health services is warranted where disordered eating is suspected
  • Screening questionnaires used for eating disorders are generally not specific for identifying eating disorder behaviours unique to T1DM, such as insulin omission, diabulimia, or ED-DMT1 7. Certain behaviours such as concern about diet or eating when not hungry may be integral to diabetes care and therefore these questionnaires may not be suitable
  • A multidisciplinary team (MDT) approach is considered the cornerstone for care of EDs in T1DM, and it is imperative the diabetes, mental health services and primary health care services communicate regularly 1, 5 
  • Setting small, realistic goals with the patient may be more appropriate than aiming for optimal glycaemic control in the first instance. Safety is the most important factor 1, 5 
  • Follow standard recommended complication screening guidelines. Complications and mortality are up to three fold with ED-DMT1 2
  • Frustration and anxiety may be present around initial weight gain/oedema with improvement of glycaemic management especially where insulin omission has been a feature. This is a significant barrier to recovery for the patient, where plenty of encouragement may be needed 5
  •  Be aware of possible acute complications of sudden improvement in glycaemic control: Blurry vision, oedema, hypokalaemia, worsening of existing diabetes complications, hypoglycaemia and relative hypoglycaemia 1
  •  Inpatient psychiatric or medical treatment may be required for stabilisation of blood glucose levels, electrolytes, DKA, hypoglycaemia or if the patient is at risk of harm to themselves. Ensure the diabetes and mental health teams are both aware and communicate with each other in this instance 2
  •  Consider flexible approaches with insulin and nutritional therapy 1, 7
  • Encourage parent/whanau involvement where possible 7
  •  Non-judgemental approach is crucial – when trust, understanding and acceptance are established with the HCP, the individual is more likely to engage in treatment 1
  • DEDA accepts patients on the basis of either referral from a health provider or self referral. Health providers can also refer patients by sending us an email with patient contact details and a brief description of the problem. Health professionals can use the below form to contact DEDA for more information on how DEDA can assist.

patient perspectives

We asked patients what they wish they could tell their health providers, and this is what they had to say:

*Names have been changed to protect identity

Amy*, 22, New Zealand

“It makes me feel not so alone when a doctor or nurse says to me “This is a common problem, and it is treatable. Let’s figure out how to do this together”

I wish I could tell you that I’m trying so hard and feel guilty for taking up space in your office when you are busy with more important cases.”

Stacey*, 19, Australia

“Sometimes the diabetes people ask me to do food logs that make my ED symptoms worse. The ED team asks me to fill out a different kind of food log too, so I’m filling out two sets of food logs, when food logs are things that triggered me in the first place.

The most important thing is that I can trust you. The fact that you don’t judge me or tell me off means far more to me than anything.”

Sarah*, 25, New Zealand

“I can’t explain how much it helps me when a doctor says ‘I have heard of diabulimia before’

It is important to work in partnership to find a way that helps the patient to be able to take their insulin/meds, and be “compliant” without using those words. Words like “non-compliant” should be banished in regards to diabetes and eating disorders. We are not being good, bad, compliant or non compliant”

Emma*, 16, Australia

“My head is a war zone 24/7. I live in a hell that I can’t escape. Numbers, numbers, numbers. Control, control, control. Grams of carbs, calories, exercise, units of insulin, weight loss, weight gain, blood glucose values, ketones, hypos, hypers, DKA.

When I am told that I am killing myself by not taking my insulin, it doesn’t help because I already want to die.”

Daniella*, 21, Australia

“Getting better from my eating disorder is the hardest thing I have ever done. I want to get better, but I don’t know how.

I like it when I am given the option to be weighed at appointments or not. I understand this is not always possible, but I appreciate being given the option where possible.”

Claire*, 25, Australia

“I want my nurse, doctor and psychologist to know they make a difference when they listen and understand and point me to people who can help.

I don’t expect the diabetes people to know everything about eating disorders. And I don’t expect the eating disorders people to know everything about diabetes. But I would hope that they understand how the two conditions overlap and how hard it is for me.”

Mel*, 33, New Zealand

“I want to talk openly about my problem with food and insulin, but I feel embarrassed and fear that they might not believe me because I seem OK on the outside.

I wish I was asked more often about my body and problems with food and was told how common it is for people with diabetes to struggle with food. I might not always answer truthfully, but I appreciate that you care enough to be direct with me and ask about it.”

Jade*, 18, Australia

“I can’t sort my diabetes out until I sort my head out.

I wish I could see both the diabetes and eating disorder teams at the same time so everyone was on the same page.”

Resources

references
1. Philpot, U. (2013). Eating disorders in young people with diabetes: Development, diagnosis and management. Journal of Diabetes Nursing, 17, 228-232

2. Dickens, Y., Haynos, A., Nunnemaker, S., Platka-Bird, L., & Dolores, J. (2014). Multidisciplinary residential treatment of type 1 diabetes mellitus and co-occurring eating disorders. The Journal of Treatment and Prevention of Eating Disorders, 23(2),134-143

3. Wisting, L., Froisland, D., Skrivarhaug, T., Dahl-Jorgensen, K., & Ro, O.(2013). Disturbed eating behavior and omission of insulin in adolescents receiving intensified insulin treatment a nationwide population-based study. Diabetes Care 36(11), 3382-3387

4. Balfe, M., Doyle, F., Smith, D., Sreenan, S., & Conroy, R. (2013). Dealing with the devil: Weight loss concerns in young adult women with type 1 diabetes. Journal of Clinical Nursing, 22(13-14), 2030-2038

5. Callum, A., Lewis, L.(2014). Diabulmia among adolescents and young adults with Type 1 diabetes. Clinical Nursing Studies, 2(4):12-17

6. Eilander, M., de Wit, M., Rotteveel, J., Aanstoot, H., Bakker-van Waarde, W., Houdijk, E., Nuboer, R., Winterdijk, P., Snoek, F. (2016). Disturbed eating behaviors in adolescents with type 1 diabetes. How to screen for yellow flags in clinical practice? Paediatric Diabetes, 1-8

7. Pinhas-Hamiel, O., Hamiel, U., Levy-Shraga, Y.(2015). Eating disorders in adolescents with type 1 diabetes: Challenges in diagnosis and treatment. World Journal of Diabetes, 6(3):517-526

8. Colton, P., Olmsted, M., Daneman, D., Farquhar, J., Wong, H., Muskat, S., & Rodin, G. (2015). Eating disorders in girls and women with type 1 diabetes: A longitudinal study of prevalence, onset, remission and recurrence. Diabetes Care, 38, 1212-1217

9. Custal, N., Arcelus, J., Aguera, Z., Bove, F., Wales, J., Granero, R., Jiménez-Murcia, S., Sánchez, I., Riesco, N., Alonso, P., Crespo, J.,  Virgili, N., Menchón, J., & Fernandez-Aranda, F. (2014). Treatment outcome of patients with comorbid type 1 diabetes and eating disorders. BioMed Central Psychiatry, 14(1), 26-37

10. Peterson, C., Fischer, S., Young-Hyman, D. (2015).Topical Review: A comprehensive risk model for disordered eating in youth with type 1 diabetes. Journal of Pediatric Psychology, 40(4):385-390

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