Monday, May 19, 2014

Sweet Faces of Celiac Disease: Meet Cyrus

Cyrus is 6 yrs. old and was diagnosed with celiac disease at 2 yrs. old. 

What symptoms were you or your child having before being diagnosed?

Cy is our first child, so -like you with Jack- when his belly started sticking out, we didn't think much of it. Right around the time Cy turned 2, he started taking longer and longer naps. At his worst, he'd wake up from a 3hr nap and be asleep on the floor 15 minutes later. He hated swings and car rides-- again, we just thought he was cranky/clingy, but later it made sense.  His tummy was constantly hurting him-- how would you like to be bounced around in the car or a swing when you already feel nauseous?  Cy was a picky eater. At the worst, he'd eat breakfast and then barely anything else all day. Our pediatrician told us not to stress about the pickiness, but it got progressively worse. 

Finally, when Cy complained that he couldn't walk up the stairs to our apt and his long naps kept happening, I forced myself into the pediatrician's office as a sick visit and made them test for everything.  It was terrifying.  1 week later, we got our diagnosis.  The dr we saw noted that Cy was off the growth chart and was still losing weight. She also noticed his skinny arms. By the time he had his endoscopy, he was starting to lose his balance. I really think we were days away from having to hospitalize him. How could I let it get that bad? 

Like you, I have a really hard time looking at pictures of Cy pre-diagnosis. I take great pride in how his gf diet has changed his life, but there is always part of me that hurts when I see those pictures and feels guilty for not getting a diagnosis sooner. It's just so hard with Celiac because many of the early symptoms are explained away by other things-- he's skinny... you were skinny child, he's a picky eater... all two year olds are picky eaters, he's having loose stools and vomiting occasionally, what kid doesn't pick up a  bug in daycare , etc.

Any other family members diagnosed with celiac disease?

My sister has since been diagnosed with a gluten intolerance, but I think it's Celiac.

How has your life or your child's life changed since being diagnosed?

Cy is night and day from how he was pre-diagnosis. His mood changed within the first day of bring GF. He laughed even. For the first 4 weeks GF, he gained a pound a week. Newborns don't even do that! He'd eat 7-8 bowls of cereal every morning. He ate everything-- steak, scallops, peaches, carrots, there wasn't a food he wouldn't try. His hair thickened, he gained weight like a champ, and he became a "regular" 2-yr old. Seeing him back-to-normal was amazing. I loved just watching him run and be a kid. He loves swings now and has more energy than I can handle most days. We've had a gf house for four years now and I feel very confident with the diet. It has become easier and easier to be gf in the "real" world. 

We talk very openly about celiac and gluten with Cy and I think it has made it easier for him in school. So many kids have an allergy to something, there shouldn't be (and isn't with us) any stigma attached to being gf.  

Being GF saved my son's life, how could I be annoyed with the restriction ever??

Cy's learning to read labels and I'm looking forward to a Disney vacation in the coming years because I've heard amazing things about their celiac awareness.

Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?

I think we just need to be more vocal and open about it. It isn't an allergy, but it should be as easy to talk about as a nut allergy. I've met other parents of kids with Celiac who try to avoid taking their kids places where they'll have to miss out on a treat or who feel guilty if they eat something with gluten and their kid can't. Of course, I'm not savoring a gluten donut in front of my son, but if we're out-to-eat and I have a roll that he wants to try, I just explain that it has gluten in it and it will make him sick. I think he has a memory of how sick he felt pre-diagnosis because if I mention that a food has gluten in it, he wants nothing to do with it and completely understands the restriction. 

I try to talk as much as possible about celiac and being gf. I bring gf treats that I love baking to all school events and talk up how delicious they are.... because they are. Aside from puff pastry(still trying to figure that one out), anything can be made gf and still be delicious, often even pass as being gluten-full when it is not. 

So long story short-- we just need to keep talking. Your website is a great resource.

Wow, thank you Mom for sharing Cy's story in detail with us. It really helps others understand what a child goes through when they are suffering with symptoms of celiac disease. Cy's story sounds very similar to Jack's. I'm so happy both of our boys are doing great! Keep up the good work momma and please tell Cyrus, that Jack says hello from Tennessee! :)

1 comment:

  1. Love this story, but I have to admit to being biased, as the mom is my daughter and Cy is our grandson. All parents of kids like Cy deserve gold medals, and I guess that smiling happy healthy kid is exactly that. Cheers to all!