Monday, August 21, 2017

Sweet Faces of Celiac Disease: Meet Collin

Collin is 14 years old and was diagnosed with celiac disease when he was 9 years old.

At what age was your child diagnosed with celiac disease?

9 years old

What symptoms was your child having before being diagnosed?

From the time he was a toddler I knew things weren't right with Collin. He wouldn't grow or gain weight like other toddlers and later on kids.  His teeth came in yellow and pitted. He never had a hearty appetite. As he got older his complaints of stomach discomfort became more frequent. By the time Collin was 9 he had undergone 3 upper GI scopes with 3 different diagnosis: reflux, erosive duodenitis, and bacterial overgrowth. Finally, his little body couldn't take it anymore. He stopped growing all together, had depression, severe diarrhea, and bleeding. He was rushed into surgery where FINALLY a biopsy of his small intestines confirmed celiac disease.

Any other family members diagnosed with celiac disease?

His father carries one of the genes. Our daughter did not get the gene.

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

Collin has slowly healed but it was a very long road.  A year after diagnosis he developed joint and bone pain so intense at times he could not walk. He was a patient at Scottish Rite in Dallas under the leading rheumatologist in the nation who had no answers.  Along the way we found out many children with celiac (some we personally knew) suffered this exact same thing. Collin eventually recovered at around 3 months down the road.  

A year after that he developed cross reactive issues where his body started to confuse similar gluten like proteins for gluten.  We spent months taking him off any food protein that could be causing reactions and then slowly reintroduced them one by one so his body learned to read them correctly. After that it was smooths sailing. This year he has grown over 5 inches and finally reached the 50% in height and weight!

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

Read, research, reach for help!

Join support groups, find a specialist for your child that knows Celiac disease, get involved in research and fund raising for a university that specializes/ studies/ does research on celiac disease.

O my goodness Collin - you went through so much!! I'm so HAPPY to hear you are doing much better. You are brave and STRONG! Keep taking good care of yourself.

And Mom, I know it's so hard to see your kiddo so sick and not understand what's going on with his body. Thankfully, he was FINALLY diagnosed. I'm so happy to hear he has grown 5 inches!!


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