This story is about my daughter, Leighton.
Around 18 months, my youngest daughter, Leighton, would thrash in bed all night long while co-sleeping with my husband and I. We would massage her legs, but it didn't help. Almost daily, we were having to give Tylenol or Motrin to help the symptoms. We went to our pediatrician who dismissed it as growing pains. Symptoms continued to get worse and worse and eventually led to her being unable to run and play with her older sister because the joint pain was so severe. Not only was the joint pain severe, but as she got older, her behavior was beyond "the terrible twos and threes". We ended up in a counselor's office looking for guidance. After all, we had been dismissed multiple times by our pediatrician and Rheumatology by this point too. I knew her behavior wasn't normal, and I knew her leg pain was more than growing pains.
Would you believe that a hair stylist was who helped us on a path to diagnosis? My husband went to get a haircut and was explaining the issues we had been experiencing. She shared that some of her clients noticed a huge difference in joint pain when switching to whole foods and healthier options. We were willing to try anything. We started right away and noticed a big improvement, but it didn't solve the issue completely. She never liked bread, and I think her body almost knew that it couldn't tolerate it, but I also wonder if that's why she never had GI issues which would have likely led us to a diagnosis sooner.
After a few months of cleaner eating, it was time for her 4-year-old checkup. I told the pediatrician that we noticed an improvement when changing her diet and I knew her symptoms were related to food. I asked for allergy testing, and he said, "does she ever complain of a stomachache?" And I said, "eh, maybe sometimes, but not often, just when she needs to go to the bathroom." He said he was going to add a celiac panel to the bloodwork order, and I thought that was a total waste of time, but I was desperate for answers and willing to test for anything.
Then I got the call. "The bloodwork is consistent with celiac disease and her numbers are off the charts." After years of searching for an answer, it was like a gut punch and a sigh of relief all at once. A gut punch because our world had turned upside down and relief because I could finally stop endlessly searching for an answer.
We went gluten free and immediately saw a change in her behavior and her joint pain, though not fully resolved even 18 months later. We continue to work with a Registered Dietician to determine why she is still experiencing joint pain when she is not being cross contaminated.
The toughest part isn't being gluten free and finding products to accommodate this lifestyle, although that can be challenging. It's the social aspect that is the hardest. Every class party, every road trip, every get together revolves around food and it is rarely safe for her. Being left out at such a young age and hearing her ask if she'll ever grow out of having celiac is a heartbreak only another celiac parent can understand. If I could take this burden from her, I wouldn't hesitate for a second.
The other aspect to it is feeling such a heavy weight on your shoulders to know labels, worry about cross contamination, plan ahead for every birthday party or celebration, never having the convenience of a quick fast-food option, and the list goes on. It's exhausting.
We have tried to make lemonade out of lemons and started a support group through the Gluten Intolerance Group in the state of Tennessee. I have advocated for my daughter by training the school on keeping her safe and sharing resources within my group. It gives me some peace knowing that I can be helpful and proactive to bring awareness, understanding, and resources to our celiac community.
This community is nothing short of amazing and has shown us the best in people. It isn't a journey I wish we had to take, but I'm grateful for those who have offered support to us in our journey.