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A few years ago a young man named Jeff came into my office seeking help to lose weight. He was 5'10" tall and weighed 130 pounds. Jeff denied starving himself, denied making himself throw up, and denied over-exercising. I tried to convince him that he was actually 30 pounds underweight. As I looked for the most effective ways of motivating him to restore his health, he brought up the fact that he had type 1 diabetes. Jeff said that he rarely gave himself insulin and that he had "diabulimia." I had never heard of diabulimia and had no idea what I was dealing with. I gave him a list of clinicians and asked him to call me back after he made appointments with an endocrinologist and a psychotherapist.
What is diabulimia?
That night I searched for the term "diabulimia" on pubmed.gov, but nothing came up. When I entered the term into a search engine, however, I got multiple hits for diabulimia chat rooms and blogs. The conversations shocked me: "I have to lose 15 pounds in two weeks to fit into a prom dress. I know I can do it as long as I skip the insulin," wrote one 16-year-old.
Diabulimia is an eating disorder in which people with type 1 diabetes deliberately give themselves less insulin than they need for the purpose of weight loss. When insulin is omitted, calories are purged through the loss of glucose in the urine. Individuals with diabulimia manipulate insulin as an inappropriate behavior to prevent weight gain. This is one of the criteria of bulimia nervosa.1 Clinicians have not defined the frequency and duration of insulin omission and many do not recognize this dual condition as a disorder. Some propose the following definition: an insulin reduction at least twice a week or of over one quarter of the prescribed insulin for the purpose of weight loss for more than three months.2,3
The term "diabulimia" started to surface among public and health communities through news, magazines, and health journals in the summer of 2007. 4,5
Although diabulimia is not yet a recognized medical term, cases of type 1 diabetes combined with eating disorders have been published since the 1970s and early 1980s. 6,7,8,9 In the past few years, the prevalence has ranged from 11 percent to 39 percent 10,11,12 among type 1 diabetes, depending on the sample size, the age group, and the geographic area. 13,14 Studies were conducted through self-report questionnaires. Because some people do not return surveys and some people don't tell the full stories during their interviews, researchers believe that the actual prevalence of type 1 combined with an eating disorder could be much higher. 15
Who has diabulimia and what are the complications?
Inadequate blood glucose control might result in slow growth and development in some teenagers. 16 In one long-term study, teenagers with type 1 diabetes who misused insulin to prevent weight gain had serious medical consequences in adulthood. Some suffered from eye problems ranging from blurred version to requiring laser surgery to blindness; kidney failure which for some required dialysis; or foot ulcers necessitating amputation.17,18,19 According to one study, the painful sensation from nerve damage caused by uncontrolled blood glucose coincided with the peak of weight loss. Remission of pain occurred as weight was regained. 20 The published evidence of complications from type 1 diabetes with disordered eating behavior is staggering. The death rate of type 1 diabetes was three times those who had eating disorders compared to those who did not. 21
Recently I received a phone call from a woman, Lucy, who was in tears. "I am forty and have been battling an eating disorder and diabetes for twenty-five years. I skip shots and have numerous diabetes complications. I now use a wheelchair because of a foot ulcer and neuropathy. Please help some younger people who have not yet destroyed their bodies like me. I have no hope now." Another woman wrote, "I have done so much damage to my body that I feel more like 75 years old instead of 35 years old. And I have completely ruined my chance of having children."
Unfortunately, few teenagers are willing to face the long-term consequences of their actions. Patricia, a sixteen-year-old, said to me "Many people tried to scare me with talk of kidney dialysis. Don't worry," she said, "I would have killed myself by the time I needed dialysis."
One out of five adolescents with type 1 diabetes suffers from depression, according to studies. 14 This further worsens the prognosis and outcome of this serious and deadly condition.
Diabulimia can affect anyone who wants to lose weight. Joyce was 13 when she was diagnosed with type 1. According to her, she was obese through her life until she lost forty pounds for a couple months prior to diagnosis of diabetes. Within few weeks of insulin management, she regained the water she was missing and recovered some of the lost tissue mass. She gained 25 pounds. It didn't take long for her to figure out that she could refuse insulin when she wished to feel good about being slim.
What to watch for
Some of the common warning signs for families and friends to watch for:
Consistent high hemoglobin A1c (glycosylated hemoglobin) or eAG (estimated average glucose).
Glycosylated hemoglobin, or A1c, tests provide an index to the average blood glucose level over a period of approximately three months.2 Estimated average glucose uses the same units (mg/dl) that patients see routinely.22
Frequent emergency room visits for diabetic ketoacidosis (DKA) may be an indicator of the presence of an eating disturbance.17 That said, some patients with diabulimia skip rapid-acting insulin and continue to take basal insulin, and they may not experience DKA. Average glucose of 250 to 400 mg/dl is common. Patricia, the teenager who couldn't face long term-consequences, had an A1c of around 14. Joyce, the teen who disliked gaining back all the weight she lost pre-diagnosis, had an A1c that never fell below 11.
Body image concerns
Individuals who suffer from diabulimia may be underweight, overweight, or within a good weight range. They show a significant increase in drive for thinness and body dissatisfaction 23. Joyce continued to struggle with being 25 pounds overweight. She weighed herself twice a day; if there was any ounce of weight gain on the scale, she skipped insulin and meals. Patricia was in a good weight range, yet regarded herself as fat. She wished to lose at least 15 pounds.
Irregular eating patterns
The eating behavior of diabulimia is very similar to the eating pattern of bulimia nervosa.
Individuals may restrict intake, skip meals, and eliminate sweets and fats with the intention of losing weight. This behavior is followed by an intense over-eating and sense of guilt. The individuals then proceed to limit their eating or avoid taking insulin. The vicious cycle repeats. The intention for people with diabulimia is to lose weight, and some may demonstrate weight loss in a period of time. However, the erratic eating behavior slows the metabolism, and lasting weight loss seldom occurs.
Discomfort eating around other people
Because of their irregular eating behavior, individuals with diabulimia prefer not to eat around other people, especially when they have the urge to overeat. Even if they sit with their family at the dining table, they will choose foods with fewer calories and eat small portions. Patricia refused to eat breakfast with her family or lunch with classmates, yet as soon as she came home from school she ate a big bag of chips and a half dozen cookies in private.
Without insulin, nutrients cannot get to the cells. When the cells need nutrients, the individual feels hungry. To satisfy hunger, they crave food. But patients with diabulimia may feel guilty, defeated, or ashamed when they lose control over their hunger. Therefore, they may hoard foods and eat alone during weak moments.
Joyce's parents could not understand why they kept finding candy bar wrappers in her room when she claimed that she was on a diet to lose weight.
Irregular or nonexistent menses
High A1c levels have been reported to cause irregular menses, cessation of periods, and delayed puberty due to interference with the function of the brain.16 Joyce had not yet started her menstruation cycles at the age of 15, and Patricia had irregular menses.
Unwillingness to follow through with appointments
Fourteen-year-old Mary cried out for help with three DKA episodes. On her third visit to the emergency room, she told the doctors that she had not been taking insulin at home; she needed help and wished to be admitted to the hospital. She was, and after discharge, she was referred to an endocrinologist and a psychotherapist for follow-up treatment. Her pediatrician also referred her to me for nutritional counseling.
Her parents could not accept that eating disorders might have played a role in Mary's diabetes. They requested that the endocrinologist prescribe the "right dose" of insulin and teach her the "correct information." After the initial nutritional evaluation, her parents cancelled the appointment with me. "The dietitian didn't really fix her eating," her parents said to her pediatrician. Mary's parents didn't follow through with her therapist either. They believed Mary's problem was strictly medical and not psychological.
I can only imagine how helpless and hopeless Mary must have felt. She finally got a health team's attention, but then her parents could not support her treatment.
In another case, a mother recognized how much her 22-year-old daughter, Susan, was struggling. She saw Susan curl like a ball in the corner of her college dorm room when she visited her. Susan was tired and nauseous most of the time from hyperglycemia. When her mother checked, there seemed to be the same amount of insulin in the fridge as there was a week ago.
Susan's mom arranged multiple appointments for her daughter's diabetes care, but Susan managed to make one excuse after another and cancelled the appointments.
Due to the unwillingness of the individuals to get well and the lack of awareness and information for the families, follow-up treatment for diabulimia is a great challenge.
Doubtful blood glucose monitoring
If the numbers shown in blood glucose meters seem too good to be true, they are.
Patricia informed me that a specific proportion of water and milk substituted for blood on the test strip produced an ideal reading of blood glucose below 200mg/dL. That was how she convinced the health providers and her mother that she checked her blood glucose and that the readings were fine. If her mother's suspicions were raised by those almost perfect numbers, Patricia then mixed juice with water to increase the number of the reading.
In both the diabetes clinic at Children's Hospital at Stanford and my nutrition counseling private practice offices, I observed the feigned forgetfulness of those who practiced diabulimia. They claimed they forgot to bring their meters; they forgot to enter carbohydrates consumed onto their insulin pump; or they forgot the trend of their blood glucose. Either they didn't want me to know the truth, or they didn't think I could handle the truth. Yet the truth was that they were taking less than their prescribed insulin and managing their diabetes poorly.
There have been few studies conducted to determine treatments for diabulimia.
The following are what I have compiled from a few articles, from talking to health professionals, and (chiefly) through my own experiences.
Proposed Treatment Plans for Diabulimia
Some individuals require hospitalization to achieve metabolic control. Those with symptoms of complications may also need inpatient treatment.
Multi-disciplinary team approach
If hospitalization is not yet necessary, individuals with diabulimia should be followed by a team of experts. For successful treatment of the multi-faceted symptoms and behavior of diabulimia, a multi-disciplinary team approach is crucial. This team should include:
In my practice, I follow clients with diabulimia every other week for nutritional education. I also request that they visit their endocrinologists or nurse practitioners monthly and their therapists at least once a week.
Develop healthy eating habits
Helping individuals to develop healthy eating behavior is the foundation of medical nutrition therapy for diabulimia. For those who are overweight, I work with them on proper portions; high nutrients, and low caloric food choices; a good breakfast; healthy snacks; a realistic meal schedule; and simple recipes for homemade meals. They make steady weight loss progress by improving their lifestyle.
Shift focus away from weight
For those who are obsessed about body weight, refraining from weighing themselves is the best approach. At the Lucille Packard Children's Hospital @ Stanford (LPCH) diabetes clinic, patients have the choice of not knowing their weight. In my offices I have clients look away from the scale when I weigh them.
Promote appropriate exercise
With the exception of patients diagnosed with anorexia nervosa, who are underweight, who have unstable vital signs, or who exhibit compulsive exercise behavior, appropriate physical activities can be usefully integrated into the diabulimia treatment plan.
Find motivators: Everyone has something important to them
Success in helping individuals make progress depends on learning what motivates them. There is always something important to someone; it's up to clinicians and families to find it. You might motivate them by explaining they could:
One might think that preventing limb amputation, blindness, renal dialysis, or death would be good motivators. However, most teenagers and young adults don't seem to think that could happen to them; it's just too far away. Immediate gratification and consequences seem to work much better.
When I started working with the eating disorders program at Lucille Packard Children's Hospital over 20 years ago, I was not sure if any of the information I provided really helped. Most of my patients claimed that they read more nutrition books than I did, and they selectively believed information acquired from friends, the Internet, or magazines. Soon I learned that resilience is the key to educating this population. It's like putting nickels in a slot machine; in order to get the jackpot, one can't give up.
And yes, I have been depositing rolls and rolls of nickels to help my diabulimia patients. I pick a subject at each visit, such as blood sugar monitoring, metabolic blood glucose control, healthy lifestyle, or short-term and long-term complications of hyperglycemia. I simply provide education without judgment, without a sales pitch, and without scary tactics.
Set small goals
It's overwhelming for those who have diabulimia when healthcare providers or caretakers expect them to accept the full amount of insulin prescribed. The less insulin they took, the higher their A1c would be. Thus, they would be prescribed more insulin at the next visit to the doctor. Therefore, the gap between what was prescribed and what was taken actually widened.
When Patricia, the teen terrified of weight gain, first came to see me, she took no insulin at all. She was prescribed 30U of basal insulin at night and a rapid-acting insulin to carbohydrate ratio of 1:15. The first week, she agreed to start with 5U of basal insulin with a 5U increase weekly. One month later, she agreed to check her blood glucose twice a day and make corrections. Three months later, she finally agreed to give herself insulin for her carbohydrate intakes. It's slow progress, but its progress in the right direction.
Jeff, the patient who introduced me to diabulimia, never called me back despite my attempts to contact him. He reached out for help but was not able to follow through. If you know someone who suffers from diabulimia, please find professional help right away.
For more information about Grace Shih, RD, MS, please visit www.GraceNutrition.org
For more information about Lucile Packard Children's Hospital @ Stanford, please visit www.lpch.org
Categories: A1c Test, Blood Glucose, Blood Sugar, Complications & Care, Diabetes, Diabetes, Diets, Food, Insulin, Insulin Pumps, Losing weight, Monitoring, Nutrition Advice, Type 1 Issues, Weight Loss
16 comments - Mar 3, 2009