FeaturesJun/Jul 2012 Issue

A Double Diagnosis: Celiac Disease and Diabetes

Emotional Fallout

People with type 1 diabetes can eat all foods, including those with sugar. But they need to take insulin to “cover” the food, since their pancreas does not produce insulin. (Of course, they are warned to eat sweets in moderation in order to avoid weight gain and cholesterol issues.)

This means that type 1 kids can have their cake and eat it, too. But what happens when they are suddenly told that their cake must be strictly gluten-free?

“For children, it’s certainly challenging to be in a situation where they can’t eat what the other children are eating,” Philipson says. “With diabetes, you can have a piece of cake. You just have to take more insulin. With celiac, there’s no choice. You just can’t have that stuff.”

The emotional toll of type 1 diabetes is significant, he says. At the Kovler Diabetes Center, a psychologist is on staff. All new patients are offered the chance to meet with the psychologist on the spot, without having to wait for an appointment. Across the country, however, only a minority of patients who need the psychosocial care actually get it, Philipson says, and it’s often not covered adequately by health insurance.

 

Some kids with diabetes and celiac rebel, engaging in self-destructive behavior. Siblings are dramatically affected. There’s a much higher rate of divorce because of the stress of diabetes management and the blame game that ensues when something goes wrong.

“The key is for families to try to be honest and upfront and recognize and validate their feelings even when they’re difficult. It’s okay to be angry. If we have a little cry now and then, that’s okay. Nobody signs up to have two chronic conditions—but there it is and it’s not anyone’s fault,” Philipson says.

Two years into the double diagnosis, the Friedman family still feels the challenges of managing Julia’s health.

“The hardest thing for me is that my daughter is 12 years old with an enormous responsibility every day she wakes up,” Shari says. “As a tween going into the teen years, developmentally that age is free and spontaneous. If my daughter does what kids her age do, it will kill her. So we have to empower Julia to be a tween and teenager and still keep herself safe.”

Shari says the process is also challenging for Julia. “Most people don’t see it because Julia has such a great spirit and she’s so full of life and energy. But this is a lot for a kid to deal with. As a parent, watching it, that’s the hardest thing….You feel helpless.”

One difficult aspect of celiac disease, says Julia, is that she can’t enjoy the same foods as her friends. Even if a restaurant has some gluten-free options, there are many tempting foods she can’t have. The diabetes is challenging because she has to constantly check her blood sugar, give herself shots and miss classroom time.

“You feel like no one else is going through what you’re going through. It’s kind of depressing at times,” Julia admits. It helps her to stay busy with soccer, basketball and cross-country. “When you’re preoccupied, you don’t think about it,” she says. It also helps to have caring friends who ask how she’s feeling and who accompany her when she leaves the classroom to check her blood sugar.

Next: Teaching Success

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