Once a Spokesperson for Juvenile Diabetes, Erin Now Suffers From Diabulimia

Grace Huifeng Shih, RD, MS Author of Diabulimia

| Jul 18, 2011

Erin lay on a bed in the emergency room, finally serious about getting help. Her second episode of diabetic ketoacidosis in a single year had sent her to the hospital shaking and vomiting. For the past seven years, she had been driven by one desire: to lose forty pounds. She refused to give herself her full dose of insulin, fearing weight gain. She hadn't seen her endocrinologist or checked her blood sugar for a year or two.

Erin was first diagnosed with type 1 diabetes at the age of nine. Ironically, she had been a spokesperson for a diabetes organization during high school, the "poster child" for an active, healthy life with type 1 diabetes through the use of an insulin pump.

Erin walked out of the emergency room desperate to find some answers. "Even if I don't get help for my sake, I need to do it for my baby girl's sake," she recalls thinking. She searched the Internet until she stumbled upon my new book about diabulimia. Ecstatic, she ordered it, read it overnight, and made an appointment to see me right away.

A 33-year-old computer engineer with a delightful manner, Erin is 5'9" tall and varies in weight from 160 to 180 pounds. Her personal weight goal has been 130 pounds. With her sweet voice, she told me that she was "dead serious about getting rid of diabulimia. It has consumed every fiber of my soul."

Diabuimia, a term and not a diagnosis, describes those with type 1 diabetes who manipulate insulin as a compensatory behavior to lose weight. Approximately 30 percent of type 1 teenagers and young adult women take less than their prescribed amount of insulin in order to control their weight. Only in the last three to four years have health communities become aware of the scary prevalence of those who practice diabulimia.

With type 1 diabetes, the body has to rely on external insulin to transport glucose into tissue cells. A cell without glucose is like a car without gas. It cannot function. Without insulin, un-transported glucose accumulates in the bloodstream like cotton candy, surrounding blood cells, flowing through blood vessels, and causing kidney, eye, and nerve damage.

The more glucose that accumulates in the bloodstream, the higher the A1C (glycosylated hemoglobin) becomes. The norm for an A1C is 6%. Erin's A1C was over 14% in the emergency room, meaning that her estimated average glucose was over 355 mg/dL. When average glucose is higher than 160 to 180 mg/dL, the kidney excretes it through the urine, causing weight loss. The weight loss may be temporary, but the damage to the body can be permanent.

Erin vowed to follow all of my recommendations. First, I helped her assemble a treatment team, setting up monthly visits to her endocrinologist, biweekly sessions with a psychotherapist, and meetings with me every other week for medical nutrition therapy. Together, Erin and I will document her treatment process and her inner struggles, so don't miss my upcoming columns to follow Erin's story and see if she eventually recovers from diabulimia.

Grace Huifeng Shih, RD, MS
Author of
Diabulimia (Diabetes + Eating Disorders)
What It Is and How to Treat It
A Guide for Individuals and Families
A Tool for Health Personnel

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Categories: A1C, Blood Sugar, Complications & Care, Diabetes, Diabetes, Diabetic, Emergency Room, Insulin Injection, Insulin Pumps, Juvenile Diabetes/ JDRF, Ketoacidosis, Kidney Care (Nephropathy), Kids & Teens, Losing weight, Losing weight, Type 1 Issues, Weight Loss

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Posted by Chris Archer on 19 July 2011

All the best with your struggle. I am a type 1 diabetic, too. You've had yours since you were nine; I was diagnosed around my thirteenth birthday. It's very difficult to have something which does not go away. Please, don't use your condition as a means of weight loss. The consequences of that are pretty terrinle. Take care of yourself, then you can take care of others. God bless.

Posted by shosty on 19 July 2011

I actually get concerned about tweens or teens reading about diabulimia. It seems as if reading about it could give them ideas. I used to shield my daughter (who has type 1) from articles on it.

Being on insulin, even via pump, can mean involuntary ingestion of carbs if the person is doing tight control. The real answer to diabulimea would be a better way to control blood sugars w/out getting low - not going to happen.

Posted by Anonymous on 20 July 2011

Read Ch 13 of DIABETES SOLUTION for how to use incretin mimetics to prevent Diabulemia.
They work.

Posted by Anonymous on 22 July 2011

Another part of the problem that isn't talked about or addressed is sub-q delivery of insulin and insulin pumps. As a pump user for 14 years it has done nothing but allow my additction to food to increase while at the same time I have decreased my exercise as I anm sick and tired of battleing with hypoglycemic events afterwards. The pump allows you to eat when you want, what you want and that causes a need for increased insulin. When you feed the carbs with insulin, you will gain weight. What is needed is SmartInsulin or transplantable islets because delivering insulin sub-q is not only physiologically incorrect but dangerous. I have pockets of fat and scar tissue from/around the insertion sites from the insulin pump, maybe its my genetics, but a different way needs to be found.

Posted by Anonymous on 7 January 2012

Ive had diabetes for 16 years. Of those 16, i battled diabulimia for 15. I had an eating disprder long before 12 yrs old when i was diagnosed...but this was such an easy way to control my weight to meet medias standards and those of my mother, who was "perfect"....i was literally and metaphorically dying to be thin, having dealt with at least 15 episodes of dka, pancreatitis and more.i am now 28 and have finally come to terms with having diabetes after beong diagnosed with diabetic retinapothy. Enduring the idea that at 28 years old, i am losing one of the most important signifiers as an idependent woman (my sight) is frightening. I am doing everything i can now to take preventative action for any further complications. Bottom line is any eating disorder is lethal but diabulimia is so easy to fall into. An eating disprder never goes away. Its like a permanent fun house mirror imprinted in the brain. I spent years of my education studying eating disprders and the relationahip of self efficacy/self esteem among people with diabetes. I think diabulimia is somethong very real and an issue thst needs to be brought to awareness. There is a book called "needles" its an autobiography or biography (cant remember) about a woman who struggles with many of thesxe same trials and tribulations. I think its also important to have people who we can relate to. Both my mother and father are type 1 like me. My father just passed exactly one yr ago from multiple complications caused by diabetes. When i was young not too long after i was diagnosed i went to a sleep away camp specially designed for children with diabetes (camp nejeda) where i maintain 2 special lofe long friends.now as a social worker/psychotherapist i am thoroughly interested in starting a mission or organization to target this trying issue.

Posted by caritenar on 23 April 2014

good share..., very help for me.

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