By Amy Ratner, Director of Scientific Affairs
Children with celiac disease can grow up normally and be happy and healthy. It takes pre-planning, either by verifying safe food will be available when they go to someone’s house, a school activity, a party or some other event or by preparing food that they can take. There are many examples of children who’ve never let the diet stand in their way from preschool through college.
The best thing a parent can do for a child with celiac disease is convey the message that the gluten-free diet does not have to limit them in any way. Being positive is extremely important. Kids with celiac disease often have a great attitude and deal very well with the fact that there are times when they can’t have some foods the other kids are having. Usually, that attitude is fostered by their parents who make sure preparations have been made so their child does not feel deprived. Food is often less of a big deal to kids with celiac disease than their parents.
Some new research is showing that kids who are diagnosed very young and don’t have symptoms are the least likely as young adults to get important follow-up healthcare, including blood tests that show when gluten is triggering antibodies. Since these kids have the benefit of being diagnosed at a point where less damage has been done by unknown celiac disease and a good chance at recovery, it’s a shame for them to lose ground by neglecting follow-up. A recent study found that children were more likely to get follow-up care as adults if they: are introduced at around 16 years old to the idea that they will eventually need an adult gastroenterologist; have a pediatric gastroenterologist who initiates a plan for a transfer to an adult gastroenterologist; and complete the transfer of care by 18 years old.
When she was diagnosed with celiac disease at two years old, I worried that my daughter would not be able to grow up happy and healthy. But she’s now 27, and she went through everything from preschool to college in a perfectly normal way. We decided early on that the diet should not stop her from doing anything she wanted, and that’s how she has lived her life. She participated in activities ranging from Girl Scouts to dance team, went to college far from home and studied abroad in London. Now she’s all grown up and getting married.
If your child is newly diagnosed, I have been where you are, and I know how you feel. So, I hope it helps to know that your child will be OK, too.