My nine-year-old son has type 1 as well as celiac disease. He was diagnosed at age six. He is on a pump and, until recently, has been very stable. Over the past several weeks, he has begun rebelling and is sneaking food/carbohydrates (including food with wheat) without telling us. His blood sugars are skyrocketing and we are paranoid to he point that we don’t want him out of our sight. Up until this point, he has been happy and healthy. We don’t believe there are any major emotional issues. Is this a normal phase for children? What advice to you have to deal with this? Should he be in counseling? What should we parents be doing?

Yes, other children with diabetes do eat food without their parents knowing. However, this is a behavior that needs to be addressed because that means certain food is probably not getting covered with insulin, and, as you know, it is not healthy for your child to have any foods with gluten.

I have a few recommendations that I hope will help your child feel more comfortable and ultimately help stop this behavior. First, it is important to find ways for your son to be honest and tell you what is hard for him about having diabetes and celiac disease, so that he doesn’t not feel like he will get in trouble. Sometimes a few simple things can help like watching the language that you use. I suggest that parents avoid using words like “sneaking” or “cheating” to take away some of the blame and shame that children may feel, because you want your child to feel comfortable telling you what he is eating without feeling like he will get in trouble. Second, once you have spoken to your son about the foods he is eating that you do not know about, I would recommend that you make an appointment with a nutritionist that is knowledgeable about pediatric diabetes and celiac disease. The nutritionist may be able to incorporate more flexibility in your son’s meal plan so that he does not feel as deprived and does not feel like he needs to “sneak foods.” Also, there may be some newer gluten free foods that the nutritionist can suggest. There is increasingly more awareness now about celiac disease and grocery stores are starting to carry more gluten free items. I just led a celiac support group and the parents had a lot of great ideas about what gluten free foods they buy that their children like (ex. gluten free chicken nuggets, pizza, macaroni and cheese, cookies, brownies, etc.) Third, you may want to reexamine the foods that are in your house. It is very hard for a young child (or person of any age) to resist eating foods that are in the house. So, maybe you should not keep some of the foods that are tempting to your child in the house. I know one family only keeps gluten free foods in their house so that the child with celiac disease feels less deprived. That is an extreme example and I know not everyone can afford to buy all gluten free foods, but these parents did not want the child with diabetes and celiac to feel deprived and different from the rest of her family. Finally, it also might be helpful to work with a counselor (psychologist or social worker) that is knowledgeable about diabetes. I know an excellent psychologist in Chicago. Her name is Dr. Jill Weissberg-Benchell and she works at Children’s Memorial. She is extremely knowledgeable about diabetes. Otherwise, you may want to ask your son’s diabetes health care team for the name of a local counselor.

DB