“Are you hungry?” my husband asked me after a particularly difficult hike in the Rocky Mountains last summer that lasted over 12 hours, where all we ate during the day was trail mix and some dried fruit. He was starving.

“I’m fine,” I replied. “My blood sugar is 115.”

He looked at me quizzically, and lovingly reminded me that blood sugar and hunger are not the same thing.

As a person with diabetes, I have had to separate my hunger from my need of food. There have been countless instances when at dinner time my blood sugar was over 400, and I had to wait until insulin brought me down to a safe level before digging in. Conversely, there have been many times (too many to count) where I was not hungry at all, but of course had to eat something because my blood sugar was under 60. I am always cognizant of my blood sugar, but not always of the crucial hunger and fullness cues. This is problematic.

People with diabetes have a tricky relationship with food. Diabetes requires one to be diligent when it comes to tracking what and how much they eat. There is also constant monitoring of food intake (carbohydrates in particular), exercise, and insulin. Additionally, people with type 1 diabetes, whose beta cells have been destroyed by the body’s immune system, secrete none of the hormone called amylin at all. Amylin is a peptide hormone that is co-secreted with insulin, and inhibits glucagon secretion, delays gastric emptying, and acts as a satiety agent. This may be why some people with diabetes struggle to feel full after meals. As a result of all of this constant tracking of food, plus the inability to regulate our hunger cues, people with diabetes may be inherently more prone to issues around disordered eating.

According to the National Institutes of Health, adolescents (ages 12-21) with type 1 diabetes experience elevated rates of disordered eating behaviors in 37.9% of females and in 15.9% of males. For adolescents without diabetes, the rates are 3.8% and 1.5%, respectively. The most common type of disordered eating among people with type 1 diabetes is a little known condition called diabulimia, where people intentionally reduce their insulin intake to lose weight. This is a serious condition that leads to diabetic ketoacidosis (DKA) and even death, if not treated.

One in three teenagers (more often than not a girl) will face disordered eating in her lifetime with type 1 diabetes. We’re bombarded with magazines and ads, fad diets and “quick fixes.” We also have to maintain a healthy HbA1c, measure every portion of food we eat, and make sure we get adequate exercise and take our insulin appropriately. It’s stressful. And how “normal” is it that every 12 year old with diabetes knows the carb counts for not only every sandwich they eat, but all of the snacks they eat at sleepovers, as well as their birthday cake?

Holding all of that healthy knowledge inside is overwhelming, especially in a society that values thinness over all else. It is also powerful that every diabetic holds the keys to their health literally in their hands. If they mismanage their diabetes, they will lose weight (losing weight is also a classic symptom of diabetes, so it stands to reason that diabulimia and the mismanagement of the condition leads to weight loss). People with diabetes face many tough battles, and food is a major source of stress for most people with the condition.

Since many people’s relationship to food is warped, it’s important to note the symptoms of diabulimia if your loved ones are showing any of the following signs, and to seek help if you think they have a problem:

According to the National Eating Disorder Association, signs of diabulimia include:

• Hemoglobin A1c level of 9.0 or higher on a continuous basis
• Unexplained weight loss
• Persistent thirst/frequent urination
• Preoccupation with body image and a fear that insulin will cause weight gain
• Blood sugar records that do not match hemoglobin A1c results (falsifying sugar logs)
• Depression
• Secrecy about blood sugars, shots, and eating
• Repeated bladder and yeast infections
• Low sodium/potassium
• Increased appetite especially in sugary foods
• Cancelled doctors’ appointments

If you think that you or someone you know is struggling with disordered eating or diabulimia, contact the diabulimia helpline or call their hotline, open 24 hours a day: (425) 985–3635.

Have you seen drastic dietary or behavioral changes in someone you love that has diabetes? Do you recognize any of the aforementioned symptoms in your own life? If so, please seek the help you need. Your diabetes and your life depend on it.