Early Diagnosis

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.

Consistent and persistent stomachaches every single day. They tended to be at similar times of day- both during the day after lunch as well as in the evening right before bedtime.

I didn’t realize it at the time, but when we saw the GI doctor for the first time she took one look at Jojo and said “Oh yes, she looks malnourished, she probably has celiac disease as well”. I was shocked as I just thought Jojo was a more petite child. Turns out some children with Celiac are noticeably smaller in stature and in weight as they are not getting the nutrients needed to grow at the same pace as their peers.

As celiac disease is an autoimmune disorder the presence of gluten in the small intestine causes the body to attack this area of the body. When this occurs an integral part of the small intestine called villi that look like little fingers reaching out of the surface of the intestinal wall and that help with nutrient absorption from food are essentially destroyed. The body attacks the gluten in the small intestine and in the process causes inflammation that damages the villi- essentially taking these finger-like shapes and flattening them down into the intestinal wall. This means that the area becomes incredibly inflamed and is also unable to absorb as many nutrients from the food that is passing through this area of the body.

This is what causes both the pain of celiac disease as well as the other problems due to malabsorption of food such as malnutrition and tiredness. This visual from Cleveland Clinic illustrates what happens in the small intestine very clearly.

The girls were in a lot of pain. Their stomachaches were real and uncomfortable enough that they disrupted their sleep, caused them to be unable to focus in class at school and made it so they did not want to eat.

What was interesting was when I saw the photo results from the endoscopy - it was very clear why they were in so much pain- with the celiac disease part of the small intestine called the villi that are necessary for processing nutrients from food get burnt off by the body’s immune system attacking them. This causes what looks like lesions or open wounds within the small intestine and this is what causes the persistent pain whenever food is passing through the intestine.

Before going gluten free, not really. No over the counter medication helps to alleviate the stomach pain from celiac disease. The girls would use a hot water bottle at bedtime and take warm baths which would somewhat ease their discomfort. However, the only thing that truly alleviated their pain and symptoms was going fully gluten free in their diet.

Within 1 week of going gluten free the girls stopped having life-pausing stomach pain. And for the first time in her life, after one week of being gluten free, Jojo asked for a second helping of food at dinner! It was like a lightbulb went off and I finally understood that our child was really suffering the entire time from the food she liked the best and that was what had been causing her picky eating and slow growth.

Given that they were so young- remember 5 and 3 years old- we had a couple years of really struggling with getting their diets under control especially in the school environment (or anytime they were outside of our home) as they were too young to advocate for themselves or truly understand what they could not eat and why.

It probably took about 6-9 months for us to see a full change and for them to be healed internally because remember - part of the challenge of celiac disease is the damage it does to the lining of the small intestine and like any wound this takes time to heal.

And honestly COVID was an unexpected blessing- this period of confinement at home meant that we could completely control all of the foods that they ate and really teach them how to eat well for their needs.

After about 9 months of not eating gluten we went back to the doctor and were shocked to see that both girls had gained 5lbs and grew 2-3 inches!

They stopped having persistent stomachaches. They would sometimes get stomachaches, but that became tied to when they were accidentally exposed to gluten.

Honestly they were annoyed by all the foods that they could no longer eat- they were so young that some of their favorite foods like chicken fingers, Goldfish crackers, french fries etc. were off limits. But over time as they started to feel better and no longer have stomachaches it was worth the annoyance of not having these foods.

And I did a lot of research on groceries and a lot of trial and error. I wanted to find gluten free food that had good taste and good texture (surprisingly hard at times!). The groceries page of this site has a grocery list that I created with some of our favorite gluten-free items that can be a little harder to find in your neighborhood grocery store and links to options to buy from retailers such as Amazon, Target and Walmart that can typically ship nationwide.

I would say it was a solid year before they had no issues and it really seemed that they were thriving (ie. eating well, gaining weight and growing normally again). And it probably took us about that long to really understand the nuances of how to have a gluten free home and what to look out for when we were out in the world either at events, eating out or visiting relatives. I have included a lot of the information about how to navigate being gluten free within your own home, at school and at parties on this site, so I hope it will help you to have an easier experience!