Sweet Faces of Celiac Disease: Meet Toby

Toby is 4 years old and was diagnosed with celiac disease at 2 years old.

What symptoms was your child having before being diagnosed?

Toby was always small for his age, despite the fact that he ate ALL THE TIME.  He also didn't sleep well. Right around the time that we introduced solid foods, he stopped sleeping through the night. He had also never had a solid bowel movement and experienced a significant speech delay. One month before he was diagnosed, he caught a stomach bug from his cousin that never went away. He would wake up in the middle of the night, projectile vomiting and explosive diarrhea. This happened for weeks. We kept going back to the pediatrician, who kept telling us that it was just a nasty stomach virus, and encouraged us to continue giving him only toast and Gatorade, which is full of gluten. Finally, after finding another pediatrician and seeing a GI, Toby was admitted to the hospital due to significant unforeseen blood in his stool, where he underwent a GI scope and was diagnosed with celiac disease.

Any other family members diagnosed with celiac disease?

Toby's great great aunt, who was diagnosed at 70.

How has your child’s life changed since being diagnosed?

In the first 3 months, Toby shot up 4 inches and gained 6 pounds. He was being treated for a speech delay pre-diagnosis, but after diagnosis, his speech went through the roof. He began sleeping better and experienced his first normal bowel movement. He was a different kid, a happy kid.

What advice would you offer a parent who’s child was just diagnosed with celiac disease?

Just breathe, and remember that with your help, your child can lead a perfectly normal life. The world seems super scary for your sweet baby right now, but it will get easier. Just do your research and always, always plan ahead. I keep GF snacks and a GF sandwich in my purse at all times, just in case, so I'm never caught off guard. Also, find yourself a good gf bakery so that you're never caught off guard for the mountain of birthday parties! Haha!

Look at you kiddo!! You're getting so BIG! I'm happy to see you feeling so much better Toby! 

What happened to Toby is what happens to a lot of kiddos...symptoms are mistaken and the child is sent home...

By sharing Toby's story and others, we can educate doctors and parents on ALL the symptoms.