Describe your child’s life prior to diagnosis.
Gabe was a happy, healthy kid. He was in the 90th percentile for both height and weight leading up to his first birthday. He was walking, talking and into everything as a typical toddler.
How did you find out that your child had celiac disease? Did you suspect it beforehand?
Gabe started daycare, and within a few days, he had his first real battle with infections, [and] everything went downhill after that. He slowly stopped walking, talking and became nearly inconsolable. He dropped weight substantially in the first few weeks. He was constantly vomiting or having profuse diarrhea.
We were told multiple times it was just “the virus running its course.” However, we knew something was wrong. We lost our happy, healthy toddler during this time.
We finally requested to see a GI who obtained lab work, and we were utterly SHOCKED to find his celiac disease labs were so high, they were undetectable. We had no suspicion of celiac disease, as we have absolutely no one in the family with celiac disease. This was very new to us.
How long did it take for your child to get diagnosed since their first symptoms?
It was only about four months from the first day he got sick until we received an official diagnosis. Although it was a short period of time, it felt like an eternity. One challenge we faced was our initial GI we saw would only diagnose based on scope and I couldn’t, in my heart, put my one-and-a-half-year-old under general anesthesia when he was already so frail. If his primary care team could have recognized symptoms earlier and started the referral process, it could have sped up diagnosis.
I knew I needed an official diagnosis but I was not willing to let my child continue to suffer consuming gluten. We sought a second opinion at a university hospital who followed European guidelines and diagnosed based on labs alone. We are forever grateful for that.
Describe your experience living with celiac disease.
We have had an interesting journey, because we transitioned to an entirely gluten-free household and still couldn’t get his lab work to budge. We changed all appliances, soaps, dog food, chapstick, toothpastes, play doh—you name it, we made sure it was gluten-free. We eliminated all oats entirely for months and still no improvement in labs—they were still off the charts. We were repeatedly told we weren’t doing something right, despite giving 100% effort and knowing that my child didn’t consume anything that wasn’t certified. I stumbled upon an article about refractory celiac disease and eliminating all milk protein, which caused a sudden and drastic improvement in celiac disease labs. We tried this, and within six weeks of being dairy-free, his numbers came to near perfect!
Our GI said it was the first time he had seen this phenomenon in his practice. Since then, he has had another child with a similar story, and was able to recommend dairy elimination, which helped this child too! I appreciate that his medical team recognizes that they learned something new and can implement that into their practice and care for future patients.
Battling celiac disease as a toddler is not easy. Daycare parties, birthday parties, and holidays are hard when you’re the kid who doesn’t understand why they can’t eat what everyone else is eating. My celiac son is so resilient, kind, patient and understanding, as he has had to battle his diagnosis. I strive to have his compassion and inclusive personality, which I believe he developed from his battle with celiac disease.
What would a cure mean for you?
A cure would mean that we could live a “normal” life. Go out to eat, go to sporting events, shove a cupcake in our face at a party and just ENJOY LIFE!
We have tried to embrace the gluten-free and dairy-free world as much as possible. We try not to shy away and hide, but rather show the world how amazing gluten-free and dairy-free food can be!
We started a cooking show, @glutenfreeforgabe, where my 2.5 year old son shares his cooking journey as a celiac child. We hope he learns to embrace his unique life, advocate for others who may be afraid to speak up and try not to take life too seriously. There’s so much stress and anxiety around celiac disease and safety precautions and we just want to ensure he has a safe space to get creative and laugh a little when things get tough.
