Navigating The Emotions Surrounding A Child’s Celiac Diagnosis

“My belly hurts,” my four-year-old daughter said to me in a hushed voice one summer day in 2015.

This was not the first time she had stated this in recent days. In fact, in the few months leading up to this day she had expressed this feeling many times and even vomited on more than one occasion. 

What is going on?” I wondered. My little girl did not seem sick. Her stomach aches would seem to pass relatively quickly, and after the few times she did vomit in the past she would be back to her usual self immediately. Yes, she was small for her age and had difficulty gaining weight, but that was just her body type, right? I repeatedly chalked these issues up to simple explanations. “She must have eaten too much.” “Maybe she is nervous about sleeping away from home on our upcoming vacation.” “Maybe she is just pretending, and her belly doesn’t even hurt.” 

But finally, on this specific July day, I decided to call her pediatrician and make an appointment. Just in case.

At our appointment, my husband and I relayed the unexplained symptoms to the doctor. I truly expected the pediatrician to brush everything off and say it was nothing to worry about. Instead, she ordered bloodwork which included a battery of tests to hopefully rule out any issues. She ordered the usual blood counts, as well as various allergy tests, and then added a celiac panel. 

“A celiac panel? Huh…” I thought to myself. Celiac disease had never been on my radar – not even a little bit— and I am pretty good at worrying about all possible outcomes, if I do say so myself. 

“Ok,” I responded to the good doctor, as I knew it couldn’t hurt.

Several days later, the pediatrician gave us a call and delivered the unexpected news. The results of our daughter’s celiac panel were off the charts. We would need to follow up with a gastroenterologist as soon as possible to discuss this further. 

Approximately one month later, after our GI appointments, as well as an endoscopy and biopsy, our daughter officially received a diagnosis of celiac disease. We were shocked. 

I had heard of celiac before. I knew one person who had been previously diagnosed. But, in reality, all I knew about it was that it was the condition where you cannot eat gluten. I had no idea about what gluten actually did to someone’s body who had celiac disease and how serious it actually was. My family had a lot of research and learning to do. 

I searched the internet for everything I could find on celiac disease. We attended a family information session given by our children’s hospital and were sent home with packets of information. To say that we were overwhelmed is an understatement. 

Despite my previous beliefs, gluten was so much more than bread and pasta. Gluten could be hidden in ANYTHING. I had no idea. Reading ingredient labels felt like learning a new language. I learned about cross-contamination, and how to prevent it, for the first time. 

I had no idea how much would be needed to be done to keep my daughter safe and healthy. 

My daughter, being so young at the time, was not phased by the diagnosis. She did not grasp the implications yet or the long term changes that would need to be made. However, while I was so relieved to know that celiac is easily managed with a lifelong and completely gluten-free diet, I worried.

I worried that my daughter would have a very limited diet from then on. I envisioned basically only produce and meat. How were we going to find things for her to eat that she liked? Could she ever enjoy her favorite treats again?

I worried that I would not do a good enough job keeping her food free from cross-contamination. Could we even keep gluten foods in our home anymore? How would I ensure that her food was safe when she was around others who were eating gluten?

I worried about how my daughter’s lifestyle would be impacted by having to be forever gluten-free. What would she do at birthday parties? She loved sharing cake with her friends. Would she ever be able to eat out again? Restaurants were basically her favorite places to visit.

I worried about it so much. But now, looking back at that stressful time, I realize that I did not need to agonize over things the way that I did. 

It has now been four years since my daughter’s diagnosis of celiac disease. Very quickly after going gluten-free she stopped complaining about her belly aches, and she began gaining weight. Her appetite also improved significantly. We were (and still are) thrilled at the changes we saw in her. 

Slowly but surely, we got the hang of finding foods that were delicious and safe for her. I was pleasantly surprised at the number of gluten-free alternatives to our everyday favorites that were available in our local grocery store, as well as how many foods that we already loved were naturally gluten-free.

Ingredient labels are no longer confusing (most of the time), and we have a system down pat for parties and playdates. 

Good handwashing during food handling and healthy habits are now second nature to everyone in our home. Our extended family and friends have even learned important tips and tricks for keeping food free of gluten contaminants. 

Through research and networking, we have even found a few restaurants that we can trust to provide safe gluten-free options. 

And, as far as my daughter is concerned, she has handled her lifestyle changes very well. She knows that she has celiac disease and does not hesitate to let everyone around her know it, too. She has learned to self-advocate and checks if something is gluten-free before eating. Of course, there are times when a moment of disappointment strikes when she sees someone eating something that she cannot have, but we try to alleviate this by having equivalent gluten-free alternatives available always. 

So, if any parents reading this have children who have been newly diagnosed with celiac disease, please know that it will be ok.

Our kids are resilient and they will still be able to find tons of foods that they enjoy.

As parents, you will learn all of the things you need to know, and before you realize it, you will be the ones reassuring and educating others. 

I know this may feel like an insurmountable challenge right now, but you really will do great. Take it from someone who has been there.  

Mia Carella blogs at This Mom With a Blog. 

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