Diabulimia (a portmanteau of diabetes and bulimia) refers to an eating disorder in which people with Type 1 diabetes deliberately give themselves less insulin than they need, for the purpose of weight loss. Diabulimia is not currently recognized as a formal diagnosis by the medical or psychiatric communities. However, the phrases “disturbed eating behavior” or “disordered eating behavior” (DEB in both cases), or disordered eating (DE) are quite common in medical and psychiatric literature which addresses the condition of patients who have Type 1 diabetes and who also intentionally manipulate insulin doses to control weight along with bulimic behavior.
A person with diabulimia, especially if not caught and treated early, is likely to suffer the negative effects on the body of diabetes earlier than a person with diabetes who is managing their diabetes in a faithful manner. Long-term potential repercussions of diabetes include renal failure, blindness and diabetic neuropathy. With diabulimia there is an increased chance of death. Diabetic ketoacidosis (DKA) is very common in persons with Type 1 diabetes who have diabulimia. This is due to the body's need for a constant supply of energy, which lack of insulin prevents. DKA is a very serious condition that occurs when one doesn't have enough insulin; without treatment it results in death within a very short span of time. Of diabetics who have DEB, a significant number intentionally misuse insulin as a means to control weight.
Suspension of insulin, combined with overeating and resulting in ketoacidosis, may be a call for psychological help or an attempt to escape unpleasant or undesirable environments. Less frequently, it may be a manifestation of suicidal intent. Multiple hospitalizations for ketoacidosis or hyperglycemia are cues to screen for an underlying emotional conflict. Dealing with the feelings brought on by the restrictive regime of diabetes 1 treatment can be overwhelming. In addition, patients may experience anxiety over the possibility of complications developing from diabetes and possible decreased life span.
Diabulimia tends to start in adolescence and is more likely to occur in women than men. One can identify a patient as having diabulimia if there are many unexplainable spikes in their Hemoglobin A1c, weight loss, lack of marks from fingerpricks, lack of prescription refills for diabetes medications, and records that do not match the HbA1c.
Note: these are the symptoms that are present with uncontrolled diabetes
These are the short term symptoms of patients with diabulimia
- Constant urination
- Constant thirst
- Excessive appetite
- High blood glucose levels (often over 600)
- Large amounts of glucose in the urine
- Inability to concentrate
- Electrolyte disturbance
- Severe ketonuria, and, in DKA, severe ketonemia
- Low sodium levels
These are the medium term symptoms of patients with diabulimia. They are prevalent when diabulimia has not been treated and hence also includes the short term symptoms
- Muscle atrophy
- Severe weight loss
- Moderate to severe dehydration
- Edema with fluid replacement
- High cholesterol
If a person with Type 1 diabetes who has diabulimia suffers from the disease for more than a short time—usually due to alternating phases during which insulin is injected properly, and relapses, during which they have diabulimia—then the following longer-term symptoms can be expected:
- Severe kidney damage - high blood sugar can overwork the kidneys, eventually leading to kidney failure and the need for a kidney transplant
- Blindness - this can be a result of retina diseases caused by the damage high blood sugar does to the small blood vessels of the retina. A cohort of type 1 diabetic patients took an average of 11.5 years to develop simple retinopathy compared to diabulimics for whom it took 3.4 years to develop.
- Severe neuropathy (nerve damage to hands and feet)
- Extreme fatigue
- Edema (during blood sugars controlled phases)
- Heart problems
- High cholesterol
Following a diagnosis of Type 1 diabetes, a patient is prescribed insulin injections, given a controlled diet, and must check blood sugar several times a day. This lifestyle may result in weight gain, which some (particularly teen girls) may be unhappy about. This may lead them to neglect their insulin treatment for the purpose of losing weight. Failure to administer insulin places the body in a starvation state, resulting in breakdown of muscle and fat into ketone bodies and subsequently ketoacids, while at the same time making the body unable to process sugars that have been consumed, so the sugars are excreted in the urine rather than being used by the body for energy or stored as fat. This typically results in significant weight loss but also places the patient at risk of a life-threatening condition known as diabetic ketoacidosis. Prolonged failure to administer insulin results in long-term complications such as diabetic neuropathy. Insulin restriction is associated not only with increased rates of diabetes complications but increased mortality risk as well; an 11-year followup study of female patients with diabetes type 1 found that those who restricted insulin had a three-fold increased risk of mortality. Diabetics who restrict insulin die at earlier ages on average than those diabetics who use insulin properly, with the average age of death for a female diabetic who restricts being 45, compared to 58 for those with normal insulin dosing.
Often, people with Type 1 diabetes who omit insulin injections will have already been diagnosed with an eating disorder such as anorexia nervosa, bulimia nervosa and/or compulsive eating. In cases where a person with Type 1 diabetes has another eating disorder, there is a tendency to discuss the other eating disorder more openly than they discuss diabulimia, as many people with diabetes are embarrassed or don't want to deal with the reality that they have lost control of their diabetes. These individuals are often not aware that diabulimia is more common than they think and is also very difficult to overcome. Unlike anorexia and bulimia, diabulimia sometimes requires the afflicted individual to stop caring for a medical condition. Unlike vomiting or starving, there is sometimes no clear action or willpower involved. Diabulimia may be more appealing to individuals who want to lose weight and do not want to feel hungry, or do not want to engage in purging via vomiting. Often there is an obsessive compulsive urge to engage in this activity for the purpose of emotional disassociation or a need to satisfy feelings of control.
Many articles and studies further conclude that diabetic females have, on average, higher body mass index (BMI) than do their nondiabetic counterparts. Girls and young adult woman with higher BMIs are also shown to be more likely to have disordered eating behavior (DEB). Many authoritative articles have been published which show that preteen and teenage girls with Type 1 diabetes have significantly higher rates of eating disorders of all types than do girls without diabetes. This condition can be triggered or exacerbated by the need for diabetics to exercise constant vigilance in regard to food, weight and glycemic control. In adolescents the need for parental control over the young diabetic's life, and the increased weight gain that insulin treatment can cause, may play roles in the increased risk for onset of anorexia and/or bulimia. The frustration of managing blood sugars and their subsequent effects on weight and self perception (altered by dealing with a chronic illness) can also be damaging to self-esteem and body image.
There are no specific guidelines for the treatment of diabetes and disordered eating, but the standard approach for treatment of two complex conditions as multidisciplinary team of professionals which in this case could include an endocrinologist, dietician, psychologist, etc.
- http://www.diabulimiahelpline.org Diabulimia Helpline: The U.S.'s only nonprofit organization dedicated to the recognition and prevention of diabulimia.
- http://www.dwed.org.uk Diabetics with Eating Disorders[UK] Charity dedicated to recognition and support, based in the UK.
- http://www.new.facebook.com/group.php?gid=20504517571 A support group for those suffering with diabulimia
- http://care.diabetesjournals.org/search?fulltext=eating+disorders&submit=yes&x=0&y=0 (Published by the American Diabetes Association)
- http://www.timesonline.co.uk/tol/life_and_style/health/features/article2649279.ece a young diabetic woman who has overcome diabulimia.
- http://articles.philly.com/2011-04-27/news/29478703_1_diabetic-ketoacidosis-insulin-shots-joslin-diabetes-center Philadelphia Inquirer: How to treat Diabulimics
- Diabulimia... The Eating Disorder that Strikes Diabetic Teens from About.com
- http://www.healthcentral.com/diabeteens/c/71576/18873/story A Teenage Girl's Account of Her DiabulimiaOur sponsors