Diabulimia
Type 1 diabetes with disordered eating (T1DE), also known as diabulimia, is a serious eating disorder that people with type 1 diabetes can develop.
What Is Diabulimia?
Type 1 diabetes with disordered eating (T1DE) or diabulimia is an eating disorder that only affects people with type 1 diabetes, usually aged between 15 and 30.
The condition causes them to reduce or stop taking insulin in order to lose weight, alongside alongside other behaviours such as restricting food intake, over-exercising, binging, making yourself sick and using laxatives to try to control weight. Some people don't stop or reduce their insulin but instead control their weight and shape through food restriction or over-exercise, which indirectly limits the amount of insulin required.
Although Diabulimia isn’t a medical term, it’s what this condition has been come to be known as. Healthcare professionals are now generally referring to the condition as T1DE.
Diabulimia and mental health
Diabulimia is serious, but it’s not a recognised mental illness in its own right. Because of this, it isn’t widely understood and some healthcare professionals may not spot the early signs or know how to support someone with it.
How diabulimia develops
There are many reasons why diabulimia may develop. It’s often not just down to one thing – it might be a combination of physical, social and mental health problems. When you have type 1 diabetes, the things you need to do to manage it can play a part in developing diabulimia, such as: • Having to carefully read food labels; • Being constantly aware of calories or carbohydrates in your food; • The focus on your weight when you go to the clinic; • Losing a lot of weight before a type 1 diagnosis and regaining the weight when starting medications; • Having to eat to treat hypos, which can cause weight gain and guilt; • Feeling shame over how you manage your diabetes; • A bad relationship with your healthcare team; and • Difficulty keeping to a healthy weight.
How common is diabulimia?
It is estimated that up to 30% of people with type 1 diabetes have an eating disorder. Eating disorders are twice as common in people with type 1 diabetes than people without the condition.
Insulin and weight loss
People suffering with type 1 diabetes generally lose weight. Starting insulin can mean that they put that weight back on. Some people can find this hard to deal with and this can be one of the reasons they start to skip doses.
Without insulin, blood sugar levels build up very quickly. This is known as hyperglycaemia (or hyper) and sufferers start going to the toilet a lot. Any calories that are taken in, pass straight through and out of the body in urine. This means you can’t get the energy you need from food and you start to break down body fat instead. This leads to dramatic weight loss.
Consequences of diabulimia
If you don’t get any or enough insulin, blood sugar levels won’t come down. This is very dangerous and it can send sufferers into a diabetic ketoacidosis (DKA) – which can be fatal.
If someone with diabetes stops taking insulin for a long time, they may lose their sight, and suffer kidney and nerve damage, due to high blood sugar levels damaging blood vessels.
Treatment for diabulimia
It can be difficult to break out of the harmful cycle of not taking insulin, but with the right help recovery is possible. Diabetes teams, GPs and eating disorder specialists are becoming more aware of diabulimia. Diabulimia needs careful treatment from a team of specialists. Some dedicated recovery programmes are now up and running in the UK., so sufferers can be referred to an eating disorder clinic or a counsellor for specialist care.
Asking for help
It’s not always easy to manage diabetes, and coping with an eating disorder like diabulimia can make it even harder. Sufferers may also feel shame about hiding it from the people they care about.
"Speaking to your friends or family is more powerful than you can imagine. If you’ve not been telling them and then you tell them, it’s a massive weight off your shoulders. Activating support you’ve already got, and realising there are people out there who care about you and love you and want to help. You might find that more powerful than looking for the expert as a first step." Professor Khalida Ismail
Diabetes UK have a helpline number: 0345 123 2399. It is a dedicated diabetes helpline for all people with diabetes, their family or friends, and people who are worried they might be at risk.
The charity Beat Eating Disorders (Beat) offers help to anyone with an eating disorder. There’s a helpline, web chat and lots of information including how to get help and treatment.
An NHS England pilot service to tackle the diabetes eating disorder diabulimia is being launched in London and along the south coast later this year.
The initiative will bring together diabetes and mental health services in a bid to help treat the condition, which is thought to affect two in five women and one in 10 men with type 1 diabetes.
Those who are referred will attend specialist day care centres and receive structured meal planning and advice on glucose and insulin management. Specialist eating disorder teams will comprise of people who have an interest in mental health and type 1 diabetes.
Body image pressure is helping to drive ever increasing numbers of young people to the health service for treatment and support and while diabulimia is rare it can be just as deadly as other more common eating disorders
The service will also provide tailored care ranging from hospital stays where necessary and help in the community to provide advice on diet, insulin doses, as well as mental health support.
The new service comes as the NHS Long Term Plan has committed to deliver a step change in mental health treatment and a renewed focus on children and young people’s health.
The service will begin later this year and if successful, more services will be rolled out across the country.
Professor Jonathan Valabhji, national clinical director for diabetes and obesity at NHS England said: “As a diabetes clinician, I’ve seen first-hand the devastating impact that this condition can have on people and their families and so these services are an important step forward in the recognition of diabulimia. With further emerging evidence from these pilot sites and more joined up working as part of the NHS Long Term Plan, we will treat many more in the near future.”
Online learning will be provided for people with diabulimia, carers and families so they can better understand the condition and support their loved ones.
The pilot will reduce emergency admissions to hospital for complications resulting from diabulimia.
Claire Murdoch, national director for mental health at NHS England said: “Body image pressure is helping to drive ever increasing numbers of young people to the health service for treatment and support and while diabulimia is rare it can be just as deadly as other more common eating disorders.These pilots are another important step forward but the fact is the NHS can’t do it all – wider society needs take a long hard look what more we can do together to protect young people’s wellbeing.”
Libby Dowling, senior clinical advisor at Diabetes UK said: “Diabulimia is a serious eating disorder which – without the right clinical and mental health support – can have devastating consequences, such as stroke, kidney failure and blindness. It can also be fatal. Diabetes UK welcomes this investment from NHS England to pilot two new sites designed to support people living with diabulimia as effectively as possible. It provides new hope that we will be able to much better support people with diabulimia. Diabulimia is often well hidden by those living with it, and difficult to spot by healthcare professionals. And with as many as four in ten women aged between 15 and 35 affected by diabulimia at some point, it’s so important that specialist – and joined-up – services like these are made available to those who need them. These pilots are so important, and we hope their success will inspire even more investment across England.”