August 2012 Issue
Understanding Diabulimia — Know the Signs and Symptoms to Better Counsel Female Patients
By Janice H. Dada, MPH, RD, CSSD, CDE, CHES
Vol. 14 No. 8 P. 14
Samantha considered herself a master of deception. At the age of 13, she was diagnosed with type 1 diabetes shortly after experiencing the telltale symptoms: increased thirst, frequent urination, blurry vision, a ravenous appetite, and unexplained weight loss.
It quickly became clear to her that if her blood glucose levels remained elevated, she would lose weight. “What an amazing discovery,” she thought. Now Samantha could eat anything she wanted and still lose weight as long as she restricted or omitted her insulin injections.
She knew the consequences of uncontrolled blood sugar but felt invincible, as many teens do. She couldn’t control her diagnosis, but she could use her disease to manipulate her body weight. This eating disorder, called diabulimia, doubled Samantha’s hemoglobin A1c levels, sent her to the emergency department numerous times, caused episodes of ketoacidosis, and landed her in an eating disorders treatment center for an entire summer.
This article will provide background on diabulimia, discuss its prevalence, and offer strategies RDs can use to counsel patients and get them the help they need.
As you remember from biology class, the body needs insulin to sweep glucose from the blood into the cells so the body can use it as fuel. Since the pancreas no longer produces insulin in people with type 1 diabetes, glucose accumulates in the bloodstream, causing the kidneys to work overtime through frequent urination to rid the body of excess sugar. As the body is starved of glucose and the calories associated with it, rapid weight loss results.1
Diabulimia patients exhibit behaviors characteristic of the eating disorder bulimia nervosa by bingeing on large amounts of sugary or carbohydrate-rich foods and purging the excess sugar through urination. Individuals with bulimia nervosa who don’t have diabetes binge on large amounts of food but purge with the use of laxatives, self-induced vomiting, or excessive exercise to lose weight.
Currently, the medical community doesn’t consider diabulimia an official diagnostic term, but it’s been used to describe the eating disorder in which type 1 diabetes and bulimia nervosa collide. The first case reports emerged in 1983 when diabulimia was defined as an eating disorder in type 1 diabetes patients who skipped or limited required insulin doses to lose weight.2
Who’s at Risk?
While preteen and teenage girls generally are preoccupied with their appearance, those with type 1 diabetes are even more so and, therefore, have a greater risk of developing diabulimia. Girls with type 1 diabetes tend to have a poorer self-image because of the disease. To make matters worse, they’re encouraged to focus intently on their diet because of their condition. The constant monitoring of blood sugar levels and carbohydrate intake that’s required may create a near-obsessive relationship with food and trigger a full-blown eating disorder. Add to this the tendency toward weight gain due to insulin use and the likelihood of an eating disorder developing increases.
The American Diabetes Association (ADA) states that women with diabetes are nearly three times more likely to develop an eating disorder than women without diabetes.3 It’s estimated that 30% to 40% of young girls and women with type 1 diabetes already have developed or will develop an eating disorder at some point in their lives.4 According to the National Diabetes Fact Sheet released by the ADA in 2011, 25.8 million children and adults in the United States have diabetes, creating a large potential for eating disorder cases.5
Prevalence of Diabulimia
Studies have shown that up to 30% of adolescents with type 1 diabetes skip or restrict insulin to lose weight.2,3 Unsurprisingly, these individuals tend to have poorly controlled diabetes, with a higher risk of developing microvascular and macrovascular complications, such as heart disease, stroke, neuropathy, retinopathy, and nephropathy. In addition, they have three times the mortality risk compared with those who don’t restrict insulin and are estimated to have a 13-year-shorter life expectancy.2 The practice of withholding insulin has been seen in girls as young as 13 and in women as old as 60.2
No matter the age, diabulimia can have devastating and permanent effects on the body. Those with the eating disorder have an increased risk of early comorbidities. And while long-term consequences are the same for anyone who has uncontrolled diabetes, adverse health effects are seen much sooner in those with diabulimia. Short-term consequences include dehydration, frequent urination and glucosuria, insatiable thirst, increased appetite, high blood glucose levels, fatigue, decreased concentration, electrolyte imbalance, and weight loss. Long-term consequences include heart attack, stroke, retinopathy, nephropathy, neuropathy, gastroparesis, vascular disease, gum disease, and infertility. There’s also the possibility of death.
Treatment Approaches for the RD
The cornerstone of care for any eating disorder is working with a healthcare team, say Marissa Kent, MS, RD, CDE, of Mission Viejo, California, and Janice Baker, MBA, RD, CDE, CNSC, of San Diego. Both agree that this team should include a mental health professional, a nurse, an endocrinologist, and an RD. Baker says if the patient is an athlete, the patient’s coach, a physical therapist, and/or an exercise physiologist should be added to the treatment team. She recommends patients receive a complete medical evaluation and an assessment of family dynamics and all external pressures at the onset of treatment.
Kent suggests creating a contract with the patient, which is beneficial for liability purposes and holding the patient accountable. This contract may include specific carbohydrate and insulin dosages recommended by the healthcare professionals involved. In some instances, the parents of a minor patient will need to be involved with the contract, possibly agreeing to administer the insulin injections or monitor food intake.
If RDs are working with patients who have diabulimia, Kent recommends having a good working knowledge of diabetes and eating disorders. She says using motivational interviewing and cognitive behavioral therapy (CBT) works best with her patients. CBT helps patients understand the thoughts and feelings that influence their behaviors. Kent informs patients that they don’t have to restrict food because of diabetes but match carbohydrate intake with insulin doses instead.
Baker says education from the outset is imperative for type 1 diabetes patients. “Individuals should be told they’ll gain weight with the initiation of insulin. Extreme elevations in blood glucose leads to dehydration. Insulin initiation and rehydration will restore weight. This process should be normalized, and a mental health professional should be seen at diagnosis to support body image concerns.”
Keeping It Real
Health professionals and researchers know plenty about the benefits of controlled blood glucose. We can calculate the appropriate amount of insulin to go with the textbook recommendation for carbohydrate intake. However, our patients aren’t robots. They have emotions and taste buds and often grapple with body image concerns and sometimes depression. Therefore, RDs must be realistic, practical, and sympathetic when making recommendations during counseling sessions. RDs need to meet people where they are and work with them to improve their short- and long-term health one step at a time.
— Janice H. Dada, MPH, RD, CSSD, CDE, CHES, is a dietitian in private practice, college nutrition instructor, and freelance writer based in southern California.
Signs and Symptoms of Diabulimia
It’s important for RDs to know that diabulimia may be an issue for the type 1 diabetes patients they counsel. They must ask appropriate questions to determine whether it exists and be ready to make appropriate referrals so patients can get the help they need. The following signs and symptoms of diabulimia can provide important clues:
• a hemoglobin A1c value much higher than would be expected, given recorded blood glucose values;
• changes in eating habits (eating more but still losing weight);
• dramatic shifts in weight;
• low energy;
• unusual food patterns;
• bingeing on carbohydrates and sweets;
• obsession with food and body image;
• anxiety about weight or avoidance of being weighed;
• delay in puberty or sexual maturation;
• irregular or no menses;
• severe family stress;
• frequent hospitalizations for diabetic ketoacidosis;
• preoccupation with label reading beyond typical diabetes care;
• excessive exercise;
• hiding food;
• smell of ketones on the breath and in urine;
• frequent urination (eg, using the restroom during a counseling session); and
• physical signs of malnutrition (eg, hair loss, dry skin).
• Center for Hope of the Sierras in Reno, Nevada, special program for diabulimia: http://centerforhopeofthesierras.crchealth.com
• Laureate Eating Disorders Program in Tulsa, Oklahoma: http://eatingdisorders.laureate.com
• Walden Behavioral Care, with multiple locations in Massachusetts: www.waldenbehavioralcare.com
• Behavioral Diabetes Institute: http://behavioraldiabetesinstitute.org
• Eating Disorder Referral and Information Center: http://edreferral.com
• JDRF: www.jdrf.org
• Something Fishy: www.something-fishy.org/isf/diabetes.php
• DIABULIMIA: Diabetes + Eating Disorders; What It Is and How to Treat It: A Guide for Individuals and Families; A Tool for Health Personnel by Grace Huifeng Shih, RD, MS
• Eating to Lose: Healing From a Life of Diabulimia by Maryjeanne Hunt
1. Diabulimia. JDRF website. http://www.jdrf.org/index.cfm?page_id=107141. Accessed May 21, 2012.
2. Rodin G, Olmsted MP, Rydall AC, et al. Eating disorders in young women with type 1 diabetes mellitus. J Psychosom Res. 2002;53(4):943-949.
3. Hunt M. Eating to Lose: Healing from a Life of Diabulimia. New York, NY: Demos Health;2012.
4. Goebel-Fabbri AE, Fikkan J, Franko DL, Pearson K, Anderson BJ, Weinger K. Insulin restriction and associated morbidity and mortality in women with type 1 diabetes. Diabetes Care. 2008;31(3):415-419.
5. Diabetes statistics. American Diabetes Association website. http://www.diabetes.org/diabetes-basics/diabetes-statistics. Accessed May 23, 2012.