Celiac Disease Early Diagnosis
Navigating the early days of a Celiac Disease diagnosis can be overwhelming. Here is our story and answers to some of the most common questions we get about how we knew and what we did.
For more detailed information from a trusted source please take a look at the celiac disease testing information on the Celiac Disease Foundation site.
My eldest daughter, Penny, was 5 and she had just started kindergarten when we started getting daily calls from the school nurse telling us that Penny had a stomachache. At first we shrugged it off as she was getting used to a new school routine, then it started happening not just at school, but also at home every evening at bedtime.
After a few weeks it became clear that her near constant stomachaches were not just transition anxiety and we wondered if she was actually suffering from a larger bout of anxiety about being in kindergarten. We went to her GP and they suggested over the counter stomach medications, a soothing bedtime routine and that we monitor her diet by doing a daily food diary.
After a few more weeks we were struck by how little difference anything seemed to make and by just how consistent and persistent her stomachaches were and how they did not seem to be tied to any particular food, activity or mood. Then her younger sister, Jojo, started complaining of the same thing and we groaned thinking "Oh no! She's copying Penny!" and figured it was just a younger sibling's attempt to get more of the attention that her older sister had been getting due to her discomfort.
We went back to the GP- now with both kids in tow- and shared the food diary for Penny and the persistent, consistent nature of her pain and that context didn't seem to matter- her stomach just was always hurting (unless she was completely distracted by doing something incredibly fun). And that is when we got the blood tests done for celiac disease.
We found out both our older daughters had celiac disease when they were 5 and 3. And we had our youngest daughter Freya tested when she was 3 years old using the blood test (she came back negative for celiac disease).
We first had blood tests done for both children. For Penny, our eldest, the blood test came back with a clear signal that she was celiac. For Jojo, our younger daughter, the blood work came back inconclusive- so a big "maybe?" that we weren't entirely sure how to reconcile with her now consistent and persistent stomachaches.
I was a bit hesitant to move Jojo to a gluten free diet. It was 2018 and the grocery store and restaurant options weren't great and she was our "carbs and candy" kid. There was no way I would be getting her to eat chickpea flour pasta or quinoa bread! I was really struggling to figure out what we would be able to feed her that she might actually eat if we changed the main source of food (ie. pasta) in her diet.
And I was even more reluctant to do the test that would give us an absolutely clear result- as an endoscopy seemed too daunting for such a young child. That is my biggest regret- I didn't feel comfortable getting the endoscopy done until a year or so later- and when we did....guess who had the worst case of celiac disease? Jojo!
So I would (in retrospect) get an endoscopy earlier if I had any question of if my child did or did not have celiac disease. It showed just how much damage was done internally in Jojo's small intestine and made it so clear that we had to be a lot more strict with her diet as well.