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

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

Visit FaceBook “Diabulimia Book” and share your thoughts
Follow twitter @DiabulimiaBook


Leave a Reply

Your email address will not be published.