My son was almost 3 years old when we finally diagnosed him with celiac disease, here is his story:
Buddy was a happy, go-lucky little guy for most of his first 2 years. He started getting ear infections at around 1 1/2 years old and they never seemed to go away. He was constantly fighting one after another. He was always sick or getting over being sick. My happy-go-lucky little guy wasn’t so happy. He became lethargic and not very active.
He also had very, very bad diarrhea every day. He would “explode” as we called it 2-3 times a day. I had to bathe him in the middle of the night when he’d have an explosion while he slept. I often threw away this clothes because I could not bear to even try to wash it.
We started getting worried when I noticed that he had not grown much during this second year. I kept a book with records of my children’s height and weight at each doctor’s visit. One day after a doctor’s visit, I noticed he did not grow hardly anything between doctor visits and he wasn’t gaining any weight.
So, we started our journey to discover what it could be. First, his doctor suggested removing dairy. He wanted us to try this for a month and then return. After that one month, I returned with no progress. So he suggested we try removing other possible “trigger foods”. He would almost always have terrible bowel movements after meals and he always drank apple juice, so I thought maybe it was the sugar. (Not knowing it was the pasta and pizza he was having with the juice that was actually the culprit). I cut as much sugar as I could from his diet. I bought sugar free cookies, sugar free ice cream, etc. We did that for one month with no luck. The third visit, we were at our wits ends and asked for a second opinion. We were sent to a gastroenterologists. He was a children’s doctor, so we thought it was a good fit.
On this first visit he said, ” There is something it could be, but I doubt it, let’s test for celiac disease.” He assured me it probably wasn’t and told me to try adding fat to this diet. He ordered a battery of blood tests and sent us on our way. We had the blood work done and waited patiently. I was alarmed, though, to hear the word “disease” attached to any diagnosis. I didn’t know what celiac disease was and it sounded scary. He called a couple of days later with a POSTIVE blood test for celiac (more specifically they test for antibodies, see my page on Celiac Disease for more info).
To make sure though, he suggested a biopsy of his stomach lining. It was the only way to know for sure. We made our appointment at the children’s hospital for his procedure. The day of, he was put under (the scariest thing to watch) and they did a biopsy. We waited another two days and finally the news came, 100% sure it was celiac disease.
I had started doing research well before the final diagnosis. In fact, the first day after our first initial meeting with the gastro, I sat in front of the computer for hours and hours pouring over websites. I mentally checked “yes” to each of the symptoms my poor little guy suffered from and wrote copious notes. So when the final confirmation came, we had come to our own conclusion that Buddy Spuddy did have celiac disease. In fact through this whole process, we also realized that my husband, Steve, had suffered from celiac disease his whole life and didn’t know it. Not only that, his mother and brother were too.
My buddy was a small, sickly little boy when we found out shortly after his 3rd birthday that he had celiac disease. Three months later he was a healthy, strong, growing boy. His little face was round and his body full. His stomach problems were gone and he was no longer sick.
By his 4th birthday, he had made up for his 1 year of not growing and grew 6 inches that year.
Now, he is 9 years old. He is very healthy and growing. I can’t begin to tell you how wonderful it was to have a diagnosis. I know that the worst feeling in the world is not knowing what is wrong with your child. I am so thankful to God that we received a diagnosis for him.
Yes, this gluten free diet has been challenging, especially in the beginning when there was very little on the market, but it has been worth it in the end. Both of my celiac boys are healthier and happier because of it.