The practice of persons (most often teen girls and adult women) with type 1 diabetes withholding insulin for weight control is not new. The ongoing emphasis on physical appearance in Western societies is partly responsible for this behavior. The fact that the person with diabetes can “purge” calories through their kidneys (as a result of the high blood sugars that occur from insulin omission), make this a more seductive approach to weight reduction than the use of laxatives, weight-loss medications, or induced vomiting. The outcomes for persons who engage in this behavior are nothing less than catastrophic. Blindness, kidney failure and even death are what are now being recognized as the logical outcome of untreated diabulimia.

It’s easier to discover this if attention is paid to a number of factors. First, there may be a significant weight loss compared to a previous medical encounter. The hemoglobin A1C will be elevated in the 12% range or higher. More occasional insulin dose omitters may not have as elevated an A1C value though, making them more challenging to identify and help. Many diabulimics will omit rapid acting insulin doses while maintaining basal insulin levels to prevent total metabolic decompensation (diabetic ketoacidosis). The person may well be in a constant state of ketosis, meaning that fat is being broken down and converted to sugar (and acid byproducts such as ketones). This results in a steady weight loss, or absence of weight gain. In the clinic, patients may forget their blood sugar results or leave their meter at home. If they do bring in data, it may be very sparse or be outright fabricated. If that occurs, the discrepancy between the blood sugar levels (which may look in control) and the A1C (which shows the opposite) would be the only clue to the provider to explore this subject with the patient.

Many of the persons who engage in this behavior have a disruption in their body image. Most feel they are overweight and that insulin is the culprit. The deal the insulin omitting patient enters into is very Faustian in nature (a deal with the devil). The patient leverages their very future for a short term gain. Many don’t know where and who to turn to for help. Experience with eating disorders and type 1 diabetes is not found in many places. Furthermore, the problem itself is very difficult to treat. There are ups and downs to deal with, not to mention the stigma many persons carry regarding this behavior, which most know is wrong, yet engage in it anyway.

Treatment protocols need to be developed. The American Diabetes Association (ADA) must develop expert guidelines for the management of persons struggling with Diabulimia. Until there are better management strategies for generalist and specialist physicians alike, this problem will remain in the shadows and not receive the proper attention its due.

Our colleague Barbara Anderson was recently interviewed for CNN on line about diabetic
bulimia. I spoke with her about this last week regarding 2 of my teen girls doing this.

Check out the story at CNN.