When the focus turns to one child’s celiac diagnosis, brothers and sisters can suffer feelings of neglect.
Your child needs support. I’m not talking about the one who has celiac disease. I’m referring to the other child, the one who doesn’t have to worry about gluten.
I recently spoke with my friend Dr. Ritu Verma, a pediatric gastroenterologist at our local children’s hospital and a member of NFCA’s Scientific and Medical Advisory Council. As the mother of three children, two of whom have celiac disease , Dr. Verma understands the condition both personally and professionally, and she raised an interesting concern. We place so much attention on the children with celiac disease that we often forget the impact it has on other children in the family.
When Dr. Verma’s children were diagnosed with celiac disease, the family rid the house of gluten-containing foods. For the two kids with celiac disease, the change was necessary to stay healthy. For the daughter who did not have the disease, it was a sacrifice she was forced to make.
“I did not have a discussion with her in terms of what we would do for her. I think that was an error,” Dr. Verma confided. “It felt like she did not have a home because we always talked about gluten-free food.”
It’s not just the changes at home, either. Families alter their dining habits, travel plans and holidays in order to meet the dietary needs of one or a few individuals. That special attention can be uncomfortable for those who have a gluten-related disorder, but a sibling who does not have the condition may crave the spotlight and experience a sense of neglect. If those feelings aren’t communicated, it can lead to jealousy and resentment in the long-run.
“The brothers and sisters don’t always speak up, I think because they feel guilty that the child with celiac disease is already suffering and they don’t want to make it worse,” Dr. Verma said. “So, it can often go for years until they reach an explosion point.”
Neither of my daughters has celiac disease, but they have made sacrifices for my health. When my younger daughter baked a wheat-based cake a few years ago, there was flour everywhere. Due to the risk that I could get glutened, my family decided that she had baked her last gluten-containing batch (in our kitchen, at least). My family takes the transitions in stride, but for younger children, it can be hard to explain why they can’t have a Carvel ice cream cake or why other families can go to McDonald’s but their family can’t.
So, how do we tackle these challenges?
Say “Thanks”: It’s such a simple word, but it shows that you acknowledge and appreciate the changes siblings have made to help your family stay healthy.
Consider setting up a gluten-containing section: Much like restaurants allocate storage and prep spaces for gluten-free food, you can do the same in your kitchen by designating a separate cabinet, a specific toaster and a special area of the refrigerator for gluten-containing favorite foods. In many cases, the child will wind up eating the same gluten-free food as their brother or sister, but having the “option” is key. “It’s the knowledge that it’s there if you want it, ” says Dr. Verma.
Next: Involving all Siblings
Involve siblings in the same activities as your gluten-free child: Are you trying out a new gluten-free pizza crust? Ask all of the kids to help pick out toppings and decorate the pizza.
Encourage your relatives and friends to give attention to all the children on visits: For example, “Sarah, these cookies are gluten-free so you can eat them. Brandon, I included lots of chocolate chips because I know those are your favorite part.”
Set realistic expectations: The gluten-free lifestyle can be tough on anyone, so it’s reasonable for siblings to express some frustrations. They won’t always “get it,” but they’ll likely agree to do what’s best for the child with celiac disease.
Check in on siblings: Communication is the most important step. When Dr. Verma diagnoses a child with celiac disease, she always asks the parents to bring the child’s siblings along to their first meeting. It starts things off on the right foot and gives the siblings a chance to hear the doctor making recommendations. That way, it’s not just the parents saying, “because I said so.”
Here’s to all the brothers and sisters – young and old – who stand beside their siblings in the gluten-free journey. We do thank you, always.
Alice Bast is President and CEO of Beyond Celiac (formerly the National Foundation for Celiac Awareness). For free resources to navigate your gluten-free journey, visit www.beyondceliac.org