For as long as any of us can remember, our kiddo has suffered from terrible tummy troubles.
When she was younger, we were frequent fliers at our local Urgent Care. We’ve also taken her many times to the ER at Nationwide Children’s, to her pediatrician and, more recently, to our primary care doctor.
Z has missed a ton of school over the years due to various stomach-related ailments. She has had x-rays, bloodwork and other tests.
All too often, healthcare professionals (and even us, her loving parents!) chalked her constant nausea and belly issues up to anxiety and stress tied to school pressures.
We knew that whatever was causing the stomach issues, Z’s anxiety and worrying about it was making it even worse than it would be on its own. This intersection of physical and mental health became a vicious cycle that interfered with school and many other things Z wants to do – like travel.
And over the past year or two, Z’s stomach troubles have gotten worse and prevailed even when she is relaxed and happy. It can’t be an anxiety stomachache/nausea if she’s not even feeling anxious at the time – can it?
This year, we finally got a referral to see a gastroenterologist at Nationwide Children’s Hospital. He spent time with us asking Z dozens of questions and came to the conclusion that yes, there MUST be something physically wrong – there’s no way this constant, chronic nausea and GI distress was from anxiety, worrying or stress alone.
We had more tests done, even more bloodwork and, most recently, a visit to the OR for an endoscopy and biopsy. That’s when we finally got the answers we’d been hoping and praying for. Just as we suspected, there IS a physical cause for Z’s symptoms!
The endoscopy showed severe damage to her stomach opening (duodenum), indicative of celiac disease. Her poor insides are just ravaged… it’s no wonder she has such awful symptoms all the time. Our long-suffering baby girl has celiac disease.
We have a follow-up with her GI doc soon, and in the meantime, we will meet with a celiac dietitian for some education. Then, our little family will spend our summer adjusting to gluten-free life and, hopefully, Z will be feeling much better physically and mentally by the start of 10th grade.
Our fingers are CROSSED. This poor kiddo could use a break! And honestly, even though it’s hard to learn that you have a chronic illness, she already feels better just knowing that this pain and discomfort wasn’t all in her head and that there’s a physical cause for the awful distress she’s been feeling.
It’s so good to have answers, even if the answer is that she has a chronic disease. It was difficult getting here, but I have read enough horror stories to know that other families have had it even harder on their path to a celiac diagnosis. I wish we could have known earlier in her life, but I’m just happy to know now so that we can reverse the damage to her intestines and get her back on track.
We just have to get her feeling better. Nothing else matters more to me than that!
If you have tips or advice for a newbie celiac family, I’m all ears in the comments below or over on Facebook or Instagram. We’ve already gotten some great suggestions and recommendations from family and friends.
