LandonThe Voices of Celiac Disease

“It has been heartbreaking to watch someone I love dearly struggle with celiac disease. It hurts that when he’s in pain, mom and dad can’t take it away!”

A photo of Landon with mascots. He is smiling.

As Landon is a minor, his story is told by his mom, Kayla.

Describe your child’s life prior to diagnosis:

Landon had a lot of tummy aches and bloating. Sometimes I would have to change him 15 times a day, and even when he was potty-trained he had no control over his bowels. It would just come without any control, sometimes as a mushy blob, sometimes a big, hard ball, and sometimes long poops that would literally clog the toilet.

For three years, Landon’s pediatrician kept telling us to try different things. Finally I asked him to send us to our local Children’s Hospital.

We then met with an amazing doctor who took on Landon’s case and sent him for blood work right away. One of the things on her list was to check for celiac disease, although I didn’t know this until she called me and told me that Landon had celiac disease. She told me that he needed to start a gluten-free diet right away!

Although we are so happy we got answers, this whole thing has been so hard on Landon. He is still struggling big time, even though he is on a gluten-free and lactose-free diet. We will probably get more tests to figure everything else out.

How did you come to know (or suspect) that your child has celiac disease?

The amazing doctor at the Children’s Hospital of Eastern Ontario in Ottawa Ontario listened to our story and sent him for blood work right away! She’s a very smart, amazing lady that we are forever appreciative of and thankful for!

How long did it take for your child to get diagnosed since the first symptoms and what (if any) challenges did you face along the way?

It took three years for him to get diagnosed. That’s a long time for a little baby to go through so much.

The whole time he was (and still is) very uncomfortable. He has chronic pain and most days does not feel like doing anything but laying down because his tummy hurts!

Now that I know the signs and symptoms of celiac disease, I want to help others and raise awareness of celiac disease for my son Landon. I hope no one else has to wait three years to find out they have celiac disease, or any other disease.

Do you believe anything could have sped up your child’s diagnosis? If so, please explain:

Yes! I think our first doctor shouldn’t have waited that long to get Landon tested. He shouldn’t have waited for me to speak up and ask to be sent to our local Children’s Hospital.

Describe your child’s experience living with celiac disease:

It has been heartbreaking to watch someone I love dearly struggle with celiac disease. It hurts that when he’s in pain, mom and dad can’t take it away! All we can do is cuddle and hope it passes as soon as possible. We hope the future will be better for Landon.

Is there anything else you’d like to add to your child’s story?

If you love someone with celiac disease, please just hug them a bit tighter today!