About 9 months ago I noticed some changes in our oldest daughter. The biggest change I noticed was that she seemed to be more emotional and was starting to have outbursts. We spent months teaching her how to calm herself down. It was successful and the tantrums became less. I have since learned that at age 6 there is a major re-wiring of the brain that occurs which can cause kids to become volatile, more emotional, and unsettled.
While this information made me feel better, I had a nagging feeling in my gut. Something just wasn’t right. She started taking a gymnastics class on Saturday mornings but we made it a rule that she had to rest in her room or nap in the afternoon in order to continue taking it. If not, the class would tire her out and she’s be miserable all afternoon. She seemed tired all the time but that didn’t alarm me as much. She had always gone to bed early and would get really tired even as an infant.
I continued to have a nagging feeling about it. We decided to go gluten free to see if it would help. We didn’t make this decision because she was having any belly pain or discomfort, though. We made this decision because I remembered reading that some parents eliminated gluten and additives and saw that their kids had more energy.
She was not a behavior problem in any way but when she did have a meltdown it was difficult to bring her back over to the calm side. With the elimination of gluten in her diet we saw a much more cooperative child. We didn’t eliminate all gluten so I would say we were 80% gluten free. We eliminated gluten in all of our meals but allowed her to eat gluten at school for snack or if we were out of the house.
One morning she laid down on the floor during breakfast and began to cry. She said there was no specific reason but she couldn’t stop. It was at that moment that I knew I needed to take her to get her blood work done.
I don’t know what I was looking for but I do know that I was hoping there was a reason for her outbursts because I suspected they were all a result of her being tired. I teach parenting classes and knew this was much more than a behavioral issue. Getting her to have her blood drawn was an adventure in itself and in the end, she was braver than I thought I’d be at her age.
A week later the doctor’s office called and said we needed to make an appointment with a pediatric GI. The only result they gave me was that she had an elevated level of an immunoglobulin. I had no idea what that meant.
I’m not one to Google things. I just don’t. I think it’s because I’m afraid I’ll find the worst information instead of the most helpful. Thankfully, I have an amazing best friend who Googled for me and told me “it’s not that bad.”
This morning we had our appointment at the Pediatric GI. Our daughter has Celiac disease. We discovered it because my mama gut was telling me to get her blood work done. Had we not gotten it done, we might have never known. She didn’t have any of the typical symptoms (bloating, gas, diarrhea, belly pain, weight loss, and vitamin & mineral deficiencies). Normally a scope is done to confirm it but the doctor didn’t feel it was necessary. A level of over 20 indicates Celiac and her level was 173. Because her level was so high at a time when she was 80% gluten free, it’s certain.
Celiac disease is caused when gluten injures the lining of the small intestine. It prevents nutrients and minerals from being absorbed into the bloodstream, which is what is making our daughter feel tired even though she eats healthier than anyone I know. With this diagnosis we really need to be more strict on being gluten-free, down to toothpaste and lip balm. Since we’ve been eating gluten free at home this won’t be too difficult for us. It will be a challenge when we are out of the house. I suspect birthday parties will be tough too. (If anyone has a great gluten free cake recipe, I’d love to have it!)
The rest of the family needs to be tested now because Celiac disease is hereditary. Regardless, the whole family will be gluten free. I can’t imagine how horrible she would feel watching her sisters eat something that she can’t have. It’s not a big sacrifice for the rest of us to make and in the end it will make us all healthier.
I am so incredibly thankful that I had that nagging feeling that something wasn’t right in the back of my mind. Sometimes a mama really does know.
Have you ever had that nagging feeling that something just wasn’t quite right?
Read more about how we survived our first year being gluten free
Click to read what we always keep in our gluten free kitchen & pantry