This fall, my youngest daughter will start kindergarten at the local elementary school. I will be one of many parents who will have the internal struggle of wanting my child to succeed as I hold his hand and try to hold back the tears. I’m sending my 5-year-old daughter into the big world of education and trusting that everything will be “okay” when the teacher takes her away from me.
However, for my daughter, school can be a deadly place because my daughter has celiac disease. It is an autoimmune disorder that affects 1 in 133 Americans and is fatal if left unchecked. Celiac disease is more than just intolerance to gluten (wheat, barley, and rye). If a person with celiac disease ingests gluten, it can damage internal organs, including the intestines, where the body’s immune system is located and where it processes nutrients necessary to maintain all vital functions. Inside the intestines there are tiny hairs called “villi” that absorb nutrients from the food we eat. When my daughter eats something with gluten, those villi lie down and cannot perform their natural function. Over time, your body will be at risk of malnutrition and you will literally starve to death, even if you are eating. Your body will not be able to live.
We have had her on a gluten free diet for 4 years and it has taken a lot of patience and food research to get to the point where we are today with her health. Who knew that store-bought playdough could contain gluten? Or that the toothpaste we had at home also contained gluten? Going on a play date with other children takes planning and anticipation. Eating out is always a long discussion about what foods are available and how they are prepared. Can we see the food labels for all the ingredients that might be on your plate? Cross contamination in the kitchen is also a big concern.
Along the way, we have met people with celiac disease, but they are generally older adults. I have not put another family with a toddler / preschooler on a gluten free diet. Children can be picky eaters, but when you are limited by these kinds of restrictions, it can be difficult for your child to deal with this part of his life. We always have fresh fruits and vegetables around the house along with the gluten-free products that are now available in many grocery stores (although they are about 240% more expensive than gluten-free foods). We have found many of your favorite foods through trial and error. He likes some gluten-free items, but doesn’t come close to others (his second birthday cake was horrible, more like a sand castle than cake).
To keep my daughter safe, education is the key. I am his mother and his advocate. I plan to meet with the school principal, as well as the cafeteria principal and the teachers my daughter will be with during the day. I will help you develop a 504 plan to outline what is and is not safe for my daughter. You will not be allowed to have food / drink unless I provide it in your lunch bag. I will also bring acceptable snacks for her when a birthday is celebrated in her classroom where cupcakes are the tradition. One of the most important things will be that if there is an incident with gluten, I will be notified immediately. You won’t go into anaphylactic shock or develop hives like other people with allergies do, but it will make you sick with flu-like symptoms for a few days.
There are other problems that accompany celiac disease for children in school. My daughter usually eats snacks every 2-3 hours and uses the bathroom more often than a typical kindergarten student. These are other topics that will also need to be addressed before school. What further complicates this issue is that she also has allergies to soy, peanuts, fish, and most dairy products, but we are working with her pediatric gastroenterologist and hope we can introduce new foods before school starts. The important thing is that at the end of the day she is happy, healthy and safe at school.
