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Jette's Journey to Diagnosis

by Erika Macchione on June 12, 2022

Our journey to Jette’s diagnosis is relatively short compared to what most people experience when they present with potential symptoms of Celiac Disease. Jette’s symptoms started in March 2019, escalated in July 2019 and she was officially diagnosed in August 2019. She experienced just 6 short months of symptoms and for that we consider ourselves rather lucky. 

Jette started presenting with symptoms mid-March. Our initial thought was that she was likely experiencing reflux. Her symptoms persisted for 2 weeks so we put a call in to her pediatrician. He noted our concerns and referred us to a local children’s hospital to meet with their gastroenterology team. 

In June, we visited the GI clinic where her doctor assumed what Jette was experiencing was prolonged post-viral gastroparesis. He recommended that we start a symptom diary and if they persisted, we could do some blood work to explore other potential concerns. We were happy with that, as it made sense to us at the time. Just a simple virus taking a while to leave her body, no big deal. 

July 2019 wreaked havoc on Jette’s body. She was already failure-to-thrive based on her small body size but then more symptoms presented. We involved her in her symptom diary, and she told us each time her belly hurt. She was losing weight from her already underweight body and now not retaining much of what she did consume. Something was seriously wrong.

July 24th brought us back to the GI clinic. We requested this appointment because not only did her symptoms not resolve but they had escalated significantly. This is when things started to get scary. We had no history of any type of bowel disease in our family. There was no basis to start from, so we started with the basics. Labs were ordered to rule out Celiac Disease, Crohn's Disease, Irritable Bowel Disease, H. Pylori, and various intestinal cancers. It seemed to take forever but results finally came back. Out of all her labs, 16 came back abnormal, including all tests in the Celiac Panel. It was a clear answer. Our girl had Celiac Disease, but this wasn’t the end.

Even though Jette had a slam-dunk case according to her labs, current best practice required official diagnosis to take place via endoscopy & biopsy of the small intestine. On August 23, 2019, Jette underwent this procedure. It was a short, less than an hour, outpatient procedure and immediately after, her doctor confirmed her diagnosis. The next week, her biopsies came back, and she had her official diagnosis of Celiac Disease. 

There’s a lot of healing that takes place after a Celiac diagnosis, not only physically but emotionally and socially as well. Jette was young at the age of her diagnosis, so her dad and I have facilitated healing for the whole family. We are grateful that our support system is wide and deep, but the mental load is heavy, and it never ceases. We have found support within the Celiac Community as well. Diagnosis day is only the beginning of a lifelong journey with Celiac Disease, but we are grateful we are able to support Jette every step of the way. 

Remember, the diet change doesn’t happen overnight, I’m going on year three and still learning something new every day. It’s an ongoing journey but so worth the relief you feel as you continue the gluten-free diet!

Contributor: Lauren Haugan, Owner of Play Therapy Creative