Celiac Disease Symptoms
For our family the symptoms of celiac disease correlated to large life changes for our little girls- going to new schools, starting kindergarten, making new friends. So when the common symptoms manifested it took us awhile to realize that they were not simply connected to social anxiety or new germs from being in a new environment.
For more detailed information from a trusted source please take a look at the celiac disease symptoms information on the Celiac Disease Foundation site.
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!