Jack's Story

When I think back to right before Jack was diagnosed, it's hard for me to look at pictures, like the one below. We had never heard of celiac disease - why would we think gluten was hurting him?? It makes me sad thinking back to that time, because my little guy was sick and I just didn't know it. 

Jack's 2nd birthday party - he's poor belly is distended
due to inflammation...I had no clue.

Jack had his 2 year well check the week following his birthday. I mentioned to his pediatrician that something didn't seem right. Jack was having diarrhea, seemed irritable and was laying around a lot. At the time, he also had a distended belly, but I didn't know that, I thought that was just the way Jack was made. The pediatrician suggested to run some blood tests just to make sure everything was fine. Little did we know, one of those tests would be for celiac disease.

Jack's pediatrician called me the following week to tell me that Jack had celiac disease and he would have to live a gluten-free lifestyle for the rest of his life. 

In this picture, Jack's bum is flat, it has no fat. This is called
"muscle wasting", which is also a symptom of celiac disease.

The search began! I was on the Internet researching celiac disease and the gluten-free diet. For 2 weeks, I was overloading myself with information. What's gluten-free? How did he get this? Hereditary? Who carries the genes? After two weeks, I finally cried. It was overwhelming! I was scared, shocked and didn't really know what was next.

BUT, it got better and the best part, Jack was IMPROVING IMMENSELY! Within 2 weeks of being gluten-free, Jack gained weight, had solid stools and started running around like a 2 year old. I was SO HAPPY to see Jack feeling better - it was AMAZING!

Jack's diagnosis inspired me to start this blog, in hopes to raise awareness of celiac disease and help others on their journey of living with celiac disease or raising a child with celiac disease.  If someone had told me about this autoimmune disease, maybe I could have caught Jack's symptoms earlier. Jack had the "classic" symptoms of celiac disease, BUT there are many hidden symptoms that are so often misdiagnosed. Luckily for Jack, he was diagnosed right away. I'm so thankful for that every day.

Getting tested for celiac disease is much easier than you may think. In many cases, you have to be your own advocate as well as your child's. Talk with your doctor if you see symptoms in your child. Beware of the red flags when speaking to your child's pediatrician. Many children continue to be misdiagnosed because they are either not tested accurately, the doctors miss the signs or parents are just unaware of what to look for.

In a world where "gluten-free" seems to be a "healthy" way of living, those diagnosed with celiac disease have NO CHOICE but to avoid gluten to keep their autoimmune disease in check.

My hope is to educate others about celiac disease and the gluten-free lifestyle. By educating others, gluten-free living will be seen as a medical necessity and not as a new diet trend.