Thursday, July 6, 2017

Sweet Faces of Celiac Disease: Meet Ericalyn

Ericalyn is 12 years old and was diagnosed with celiac disease at 9 years old. 

What symptoms was your child having before being diagnosed?

She was considered asymptomatic....MAJOR stunted growth, horrible ulcers in her mouth, occasional night terrors, occasional acid reflux, (hair thinning that MOM noticed.....I say this because when I took her to the doctor saying she has bald spots and is losing her hair, the doctor laughed and said she was fine....finally 3 years after her diagnosis, her hair is getting thicker and growing).  I repeatedly took her to the doctor for 4 years saying something was wrong......her stunted growth and second bone X-ray in 3 years finally got the doctors concerned.

Any other family members diagnosed with celiac disease?


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

I wish I could say she's 100% better but this celiac journey has been hard. A diagnosis was so relieving for me but I think she struggles emotionally with the diet change. Sometimes she hates being different and wishes she could be carefree with her friends......she hates being tiny and cringes when people are shocked learning that she's 12 since she is as tall as her 9 year old brother. She is slowly growing taller, her hair is thick now and beautiful, her mouth ulcers are a rare annoyance, her night terrors are gone, and she looks healthier. In my eyes, she is the strongest girl I know. Her scope showed a level C3 (worst possible damage and a slam dunk case for celiac....her pictures are used for display in her doctor's office) and the doctor was shocked she wasn't hospitalized for severe pain because of the intestinal damage he saw. He also was amazed she had energy and her vitamin levels were perfect. He said he's never seen a case like hers. 

I'm hoping one day she is 100% better. Right now we just take it one day at a time.

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

It's frustrating and hard for us as their parent and the one responsible for what they eat.....but keep in mind, how they feel. Learning something's wrong with their insides and they can't have certain foods must be so scary and hard to understand as a child. Be a team through it all and be there to hug or cry through the emotions this diagnosis brings. I was overwhelmed at first but imagining what my child was going through kept me going strong! Teach your child how to take control of this disease by learning what gluten is and the hidden names for it. Also be their voice when they need you to be.....but back off when they need you to as well. Sometimes my willingness to bring a gluten free pizza to a party is met with rolled eyes and annoyance. Don't take it personally. Do more or less day by day, taking your child's lead. 

And.....those family members or friends that go out of their way to remember a gluten free item for your child, will hold a special place in your heart ?? I still get choked up when people remember my daughters diet.

Ericalyn, what a beautiful smile you have! You're absolutely beautiful and I'm so happy to hear you are feeling so much better! I hope you're having a great summer so far and keep taking good care of yourself and never feel embarrassed or ashamed of your gluten-free lifestyle.  Hold your head high and teach others about this autoimmune disease that affects millions. 

And mom, how frustrating for you, knowing there was something wrong those 4 years, but doctors just couldn't figure it out. Being persistent and following your mother's instinct, is something we all must do! We just know when something's off.

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