The Signs of Diabulimia

Diabetes Eating Disorder

| May 14, 2011

Meet Mary,* a 16-year-old girl with type 1 diabetes. When her parents ask her how her blood sugar is, she always has a good number. She keeps a tidy logbook of her blood sugars, and they look fine, although her last A1C was inexplicably high. It's been a long time since she was diagnosed, and her parents are confident that she knows how to care for herself. She has been somewhat less energetic for quite awhile, but her parents attribute that to growing pains, as Mary has grown from a chubby child into a very slender young woman. She appears a little dehydrated and flushed sometimes, but she always drinks a lot of water and goes to the bathroom frequently, so her parents aren't concerned. They have also noted a fruity odor about her, which she attributes to a new lip gloss.

Should Mary's parents be worried about her? The answer is yes, because the weight loss, the dehydration, the excessive drinking and urinating, and the fruity odor of ketoacidosis are all signs that perhaps Mary is deliberately not taking her insulin in order to lose weight. In fact, Mary is showing indications of diabulimia; an eating disorder in which the purging associated with bulimia is accomplished not through vomiting, but by shedding glucose as a result of not taking insulin.

Although diabulimia is a very dangerous illness that can lead to deadly ketoacidosis and long-term complications, patients, especially younger ones, do not usually seek help on their own. Shawn Gersman, MD, is the medical director of the Renfrew Center of Florida, a residential eating disorder facility. He says, "The patients are ashamed of what they're doing, and they tend to be very secretive. Also, in the short term, it's working for them. They don't think about the long-term consequences, but just think about the short term of losing weight. Unfortunately, skipping insulin doses for an extended period of time is actually, a very effective method of weight loss. There's not much incentive for them in the early stages to seek help."

Because the children are not likely to come forward, it's important that their parents and loved ones are aware of the physical warning signs that result from abuse of insulin. When patients are skipping insulin and developing diabetic ketoacidosis, they will exhibit many of the symptoms associated with their initial diagnosis of diabetes. They may appear dehydrated, and they frequently go to the bathroom to urinate. Often they complain of excessive thirst, and they tend to become very lethargic. A fruity odor may be emanated, which is a result of the production of ketones. If parents can learn to recognize the symptoms, then these patients can be brought to a professional for help more readily.

Eating disorders occur more commonly in people with diabetes than in the general population. Dr. Gersman says, " I would say that over the last decade or two, we've seen an overall steady increase in these cases."

He goes on, "Essentially, eating disorders are anxiety disorders. They are maladaptive ways of managing anxiety and stress. Diabetes is a stressful condition in and of itself. A diabetic is faced with issues of life and death every day, and that creates anxiety, which is a contributing factor for bulimia because bulimia serves as a release of anxiety."

"Furthermore, because these patients are often going to doctors, there's an increased amount of attention being paid to their body, to their glucose levels, and to their diet, and that focus predisposes them to developing an eating disorder."

"So, the diabetes itself may not directly cause the bulimia, but it makes it easier for the bulimia to occur. It's another method that patients can use to manipulate their body weight. There are also occasions of patients taking extra insulin, the opposite of skipping insulin, in order to binge. It can go either way."

Dr. Gersman says, "We look at purging and abuse of insulin as symptoms, and we want to get at the underlying thoughts and feelings that trigger these symptoms. Typically, someone with anorexia or bulimia with diabetes has thoughts that she may or may not be aware of, thoughts that are creating very uncomfortable feelings of fear, shame, depressed mood, or grief. Quite often the underlying thoughts are of catastrophe or worthlessness. We help the patients identify the underlying thoughts and where these thoughts originate, and then we help them to change the way they're thinking in order to change the way they feel. Once they don't have the anxiety, they are less likely to feel the need to purge."

"The most important thing to emphasize," says Dr. Gersman, "is the recognition of the condition by family and supportive loved ones so that these patients can be brought in for help. Even though there are high rates of successful treatment, there is also always the risk of relapse. Patients may do well for long periods of time and then revert to eating disorder behaviors when they are under stress. So it's important that they have a support network of people who are watching out for them. That's the most important thing that I can get across. Supportive family and loved ones are critical, and the education of family and loved ones to recognize the warning signs."

What should you do if you suspect that your child may have an eating disorder? First of all, she needs to have a complete medical examination to evaluate her medical status. She may need to be brought into an inpatient medical hospital first and then enter a 24-hour residential facility to get the eating disorder and the diabetes treated together.

Dr. Gersman says, "The vast majority of these patients are young, in their teens or early twenties, so a lot of the times the damage they have sustained from high blood sugar can be reversed, or at least mitigated."

*Mary is a hypothetical patient.

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Categories: A1c Test, Adolescent Girls, Diabetes, Diabetes, Diabetic, Eating, Eating Disorder, Health, Insulin Omission, Ketoacidosis, Losing weight, Type 1 Issues

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Posted by Anonymous on 16 May 2011

Or maybe, we should call it dianorexia?

Posted by Anonymous on 18 May 2011

If *Mary is on a pump and sensor then this is a perfect case for what Carelink (Medtronic) can provide when shared with her Dr. There is no way that the high A1c would be inexplicable with the information Carelink provides.

Posted by angivan on 20 May 2011

There wasn't a name for this when I was doing it in my late teens to early 20's. I didn't skip insulin doses, but I didn't give myself enough either, and didn't test my BG's on any regular basis. A1C's were 8 or 9 and I saw my endo maybe twice a year. But I was thin and fabulous! I finally woke up when I was about 24 after reading that high BG is like having maple syrup in your veins, but it took several years to work up to where I am now with an A1C around 6.5 and testing 6-7x a day. What a difference! I did gain weight when I got my BG's under control, but thanks to Symlin I am back to a very healthy weight. Not thin, but healthy. I just hope I've managed to neutralize some of the damage I undoubtedly did to myself all those years ago. Regardless, I'm 44 now, in good shape, and ready for the rest of my life.

Posted by Anonymous on 28 May 2011

"What should you do if you suspect that your child may have an eating disorder? First of all, she needs to have a complete medical examination to evaluate her medical status. She may need to be brought into an inpatient medical hospital first and then enter a 24-hour residential facility to get the eating disorder and the diabetes treated together."
Happy to see boys arn't at risk of this disorder lol

Posted by Anonymous on 20 July 2011

I agree that the name diabulimia has a terrible sound to it. What else could it be called? Any suggestions...?

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