Written by Josh
How we came to know my daughter was a celiac. As I describe in my diagnosis story it took time to figure out why I was feeling ill but the family history sped up the process from what some people experience. Now my daughters’ story is much the same. Yet it still breaks my heart that we didn’t clue in sooner and that we were unknowingly not providing her the nutrition she needed. Lydia is the sweetest little girl although every father would say that about their child. She was your typical little toddler but was often constipated, for some unknown reason, it wasn’t until she was six years old with the seventh birthday right around the corner that we realized something was off. It was lots of little things that in themselves could be dismissed but together they were something. Nearing the end of first grade we became concerned with her development, it was like she wasn’t growing and all the kids around her were, she hadn’t lost any teeth, had never had a haircut yet only had chin length hair, was showing signs of struggling to learn when she had shown signs of being very bright as well as having wild emotional swings. It was the emotional swings and outbursts that finally provided the clue on what was going on. Like you, if you are reading this site I was trying to learn about how to deal with my own challenges with eating gluten free. I was reading an article that I wish I would have saved that had linked ADHD and emotional swings in children as a symptom of celiac disease. The light went on in my head could this really be what was going on with my sweet little girl? We made an appointment to meet with our doctor to discuss the possibility and have her tested. The test came back as we suspected that she was a celiac.
Now what did that mean for our lives? I was just starting to understand how to cook and eat gluten free for myself but what did this mean for a young child? How would she handle it, what about birthday parties and cake, what about school lunches, what about eating at a friend’s house? As an adult I had to read labels, and ask what was in food when eating anywhere. How would a kid just learning to read be able to handle and manage it? Would she even try or understand? Really!? what kid is going to turn down a piece of chocolate cake?
Now at this point in our lives we were by no means the example of healthy eating in general. Mac and cheese, pizza, hotdogs, chicken fingers, were all staples.
We made a couple of key decisions at this point.
- We would make the entire house gluten free to avoid having Lydia accidentally eat a glutenous item while at home. I am a strong believer that a child should have access to a safe environment, this includes not having potentially harmful food available for them to mistakenly eat, we wanted it to be as easy as possible for her. For a little kid to remember which snacks were ok and which were not we felt was too much to ask.
This decision actually simplified our lives significantly, we were no longer cooking 2 meals or a main meal and an alternative of some items for me. And it totally eliminated the risk of cross contamination at home.
- We sat down and explained it to Lydia in as simple way as we could, that she was like daddy and was allergic to wheat and that it would make her sick, this conversation lead to tears, another one of those unexplainable emotional outbursts.
After eventually calming her down we discovered what had triggered the emotional breakdown when we told her that she needed to eat gluten free. She had been exposed to the gluten free diet that I was trying to follow and had over heard conversations about gluten free pizza tasting like cardboard, she loved pizza and didn’t want to have to eat cardboard, lesson here, kids are always listening. And so began our journey with a gluten free child.
The first month was the hardest but it soon became easier to manage. Learning to adapt took time but has been so worth it,
Within a few weeks the emotional outbursts had significantly reduced, teeth were becoming loose, and her hair had grown noticeably. The change in my little girl was undeniable. The part that shocked me the most was how she owned it and took total responsibility for it, never trying to sneak a treat or snack and if she didn’t know if it was gluten free refusing to eat things. My biggest fear turned out to be unfounded. Even as a little kid she could identify that she felt better eating gluten free.
The other thing that helped in her learning and awareness was a friend of hers in school was extremely allergic to peanuts, and the vigilance that she needed to pay to avoid a potentially life threatening reaction. This is one of the things to be thankful for with celiac disease that while gluten must be avoided, in a situation where cross contamination happens you do not need to worry about an anaphylactic reaction.