FeaturesJun/Jul 2012 Issue

A Double Diagnosis: Celiac Disease and Diabetes

The highs and lows of celiac disease and type 1 diabetes

Photo by Kurtis Roberts

Photo by Kurtis Roberts

Gregg and Shari Friedman sit around the kitchen table. In front of them is a large plastic coffee container, big enough to make 270 cups. But the bright blue jug is filled to the rim, not with coffee, but with two months’ worth of needles used by their 12-year-old daughter Julia, who has type 1 diabetes and celiac disease, both autoimmune diseases that require constant vigilance.

“Do you want to know what a day in the life of Julia is like?” Shari asks, pulling out a kit full of supplies. Julia needs to prick her finger to test her blood glucose level five to ten times a day – when she wakes up, before she eats any food and at bedtime. She also must test her glucose before, during and after strenuous activity like soccer, basketball and cross-country practices. This is necessary in order to maintain Julia’s blood sugar levels within a normal range. Extreme highs and lows can be dangerous to both her immediate and future health.

Julia is not alone. About 2.5 million people in the United States have type 1 diabetes and 10 percent of them also have celiac disease. By comparison, about 1 percent of the general population has celiac. The two diagnoses pack a double whammy: Kids must be constantly on guard, vigilantly controlling their blood sugar while also avoiding any trace of gluten.

“When it comes to eating, most people live their lives uninterrupted. But when you’re a diabetic, your life is interrupted. When you’re a celiac and a diabetic, your life is interrupted two times,” Shari says. “You have to stop and say, ‘What am I eating? Is it safe for me to eat? Does it have any gluten in it? Has it been prepared properly without cross-contamination?’ Then you have to say, ‘OK, I’ve identified the food source. How many carbohydrates does it have? How much am I going to eat right now? Am I going to do any physical activity? OK, let me calculate in my head what’s my best guess for the proper insulin dose, given all the things I just mentioned.’”

It’s been a rough road for Julia and a roller coaster for her parents. When Julia was 8, she developed a persistent raw skin rash on her hands. She was constantly tired, wasn’t gaining weight and exhibited anxiety. Her behavior was erratic, with her emotions inexplicably shifting from sad to mad and tears to anger in the blink of an eye. The Friedmans consulted a series of doctors, including their pediatrician, an ear-nose-throat specialist, a cardiologist, a dermatologist, an allergist and a psychologist but found no resolution.

When Julia was 10, her symptoms escalated. By December 2009, she had lost more than ten pounds, had dark circles under her eyes and was constantly hungry and thirsty. Four months earlier, her blood glucose had been normal but her pediatrician ordered another series of blood tests. This time, he placed an urgent phone call to Shari with the results: Julia’s blood glucose level was over 650 (the normal range for children is 80 to 120). His instructions: Pull your daughter out of school immediately and take her to the emergency room.

Julia wasn’t diagnosed with celiac until three months later, in March 2010, when she was told she had soaring tTG antibodies, positive for celiac disease. After one week on a gluten-free diet, Julia’s troubling skin rash was completely gone and her erratic behavior started to improve. Her parents wonder: If Julia had been diagnosed with celiac disease earlier, would the diabetes never have developed?

Next: Genetically Linked

Comments (1)

Thanks for this story. We are not alone my daughter is eleven now and at ten was diagnosed with diabetes then 3 months later celiacs. Because of her celiacs diagnosis, we had a family screening and her brother was also diagnosed with celiacs .One year later my daughter has stated showing antibodies against her thyroid, I feel abit overwhelmed but we try to be positive. Thanks for sharing your story, it nice to not be alone.

Posted by: tlsteggs | August 17, 2014 9:27 AM    Report this comment

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