Sweet Faces of Celiac Disease: Meet Spencer

Spencer is 9 years old and 
was diagnosed with celiac 
disease when he was 
18 months old.

What symptoms was your child having before being diagnosed?

Weight loss, diarrhea, screaming with tummy pain, would refuse most foods. Swelling, hives. joint pain and joint swelling. Melt downs. 

I watched my beautiful baby boy slowly start to slip away. Doctors kept giving wrong dx and acting as if I were crazy! Then his weight dropped and his tummy became very distended...the doctors finally figured out that it was celiac disease.

Any other family members diagnosed with celiac disease?

No, but we have had family members who have ended up w colon/ intestinal cancers after having life long stomach issues and pain. My test was inconclusive, but eating mostly gluten-free when I got tested I am going to assume it was a false blood test.

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

Spencer was able to run and play without crying at night with his knees hurting. His tummy pain stopped for years after going gluten-free. He starting gaining weight. He didn't seem to be so out of sorts and was finally sleeping better. No more hours of screaming with tummy pain at night. He began to enjoy food and loved trying new things.

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

Take it one day at a time. It can be overwhelming but pick your child's favorite foods and learn how to make it gluten-free. Then branch out. With the right research you can make anything gluten-free! It's okay to cry, it's okay to mess up a recipe too.

And you have to try again, your kid will forgive you! Learn how to make sweet treats, for kids those are important! Best, easiest, moist cake recipe I found was on the back of the Bob Red Mills gluten-free almond flour! 

Invest in food saver/ freezer containers, cook what you can in bulk and freeze it so you have them on spur of the moment, Like impromptu pizza night! Don't worry about the person who gives looks or acts strange when you bring all the food for your child. Get your kiddo on a 504 plan for school! Educate the school and keep frozen treats at the school for your child so they are never left out of a party. Pre plan everything you can. Send a tin can to the school w safe candies, seems like schools give out tons of treats.

Spencer, look at that smile! So happy to see you smiling! I hope you're doing well kiddo.

And, thank you Mom for all the great tips and suggestions!