A Double Diagnosis: Celiac Disease and Diabetes
The road is getting smoother for the Friedman family.
“The first year that we were dealing with a double diagnosis, it was very, very stressful, not just for our daughter but for us,” Gregg says. “We’re much calmer now. It took us a while to be able to accept the diagnosis and figure out how to deal with it and how to help Julia without seeming overwhelmed ourselves.”
“We’re lucky in a number of regards,” he says. “There are a lot more food choices and options now than there ever were before. Also, we have a bright, articulate child who can understand the enormity of all this and with time has learned to deal with everything. She’s become very good at expressing herself if she’s not feeling well or if there’s something that’s not right—not just to us but also to others. We’re also fortunate that her core group of friends is very understanding and supportive.”
Support groups can also help families connect with others, says Laurie Higgins, RD, LDN, a certified diabetes educator at the Joslin Diabetes Center, an affiliate of Harvard Medical School.
“I always tell families that support groups are not about sitting around in a circle and holding hands. A local support group can be the best way for them to get information about which grocery stores, restaurants and bakeries cater to the gluten-free community,” says Higgins, who helps families with diabetes transition to the gluten-free diet.
Although it can be challenging to go gluten free, newly diagnosed families shouldn’t delay, advises Amy Hess Fischl, RD, LDN, a certified diabetes educator with the University of Chicago Kovler Diabetes Center. “It’s not advisable to transition slowly. Gastroenterologists recommend eliminating gluten as soon as a positive biopsy is confirmed because gluten is toxic to the system for those with celiac disease. The longer a celiac stays on a gluten-containing diet, the more damage they can do to their bodies. If kids are diagnosed with celiac and remain on gluten, it can affect their growth and blood glucose control, among other problems.”
Fischl stresses the importance of healthy food choices. Consuming excess carbs and calories makes blood sugars more difficult to control, which could lead to weight gain, cholesterol issues and long-term complications.
Chicagoan Stacey Wolin encourages a healthy diet for her daughter Brianna, 17, who has type 1 diabetes and celiac disease. She steers her daughter away from consuming too many carb-heavy gluten-free foods at once. At times, it’s been challenging to achieve a balance between what Brianna may crave and what is healthy.
“As a diabetic, your number one enemy is carbs. But then with the additional diagnosis of celiac disease, the entire focus is the search for tasty gluten-free bread, pasta, cereal and cookies,” Wolin says. Many gluten-free foods “have lousy carbs. They are not very nutritious and they have a high glycemic index so they raise blood sugar quickly. You need to ask, ‘Is this gluten-free food healthy for me? Is it nutritious and is it good for me as a diabetic?’”
Wolin has focused on a positive “can do” approach, even if it means hiding her own doubts and fears from her daughter. “I’ve taught Brianna that it is all very manageable,” she says. “You have to instill confidence and independence at the same time.”
Brianna took that leap to independence when, two summers ago at age 15, she embarked on a six-week cross-country social action trip for teens. Brianna kept a cooler on the tour bus stocked with yogurt, sliced turkey, cheese sticks and baked potato chips. Her mother initially tried calling ahead to find gluten-free restaurants in each city. But when the tour’s plans changed too often, Brianna ended up simply taking a bag of gluten-free food into restaurants with her.
“It was the first time she sat in a restaurant and didn’t feel sad,” Wolin says. “It was just timing. She was ready to say, ‘It’s okay if I’m not eating what my friends are eating.’ She had her gluten-free granola, her yogurt, mozzarella cheese sticks and hard-boiled eggs and was fine.”
Brianna was able to find that balance on her own, as do many kids with type 1 diabetes and celiac disease.
“It was that trip that convinced her that nothing could stop her. She could find food that she knew was safe for her and not worry that it was different,” Wolin says. “I think she’s in a good place now. Now I feel like she can do it on her own.”
Chicago-based health writer Eve Becker is author of glutenfreenosh.com. Her youngest daughter has celiac disease.