Sunday, July 30, 2017

Sweet Faces of Celiac Disease: Meet Ryleigh

Ryleigh is 6 years old and was just diagnosed this past year. 

What symptoms was your child having before being diagnosed?

Constipation, stomach pains, paleness, fatigue and delayed growth.

It began with me questioning at every well check why my baby was constipated.  The answers were always, “it's just something she's eating, she'll grow out of it, be sure to give her Miralax daily.”  Finally at the age of 3, after the constant questions about this continued constipation, our pediatrician referred us to a Pediatric Gastroenterologist. This physician humored us by running blood work, but with the same education on giving her more fiber, Miralax or juices.  More than 6 months after that blood work was drawn, I had a phone call, "We found Ryleigh's celiac panel and it was positive."  Found? It was lost? Positive?  Celiac?

 A few days later I called the GI to set up a follow up, at this time he requested that we set up an endoscopy to confirm the diagnosis. I thought sure that should be easy, but her endoscopy came back negative for celiacs. At this point we were back in limbo.  Why is my 3 year old still constipated, she has stalled on the growth chart and has constant tummy complaints. Our GI's advice, keep giving Miralax and she'll grow out of it.

Fast forward 2 long years.  Summer before kindergarten, Ryleigh is 5.  The tummy complaints are more frequent.  By eliminating dairy, bowels are more frequent but inconsistent.  Behavior and emotions are unpredictable.  She's such a picky eater.  I thought, maybe it's attention seeking or anxiety about starting kindergarten.  Then it got worse, the weight loss began, phone calls from school about upset stomachs, Ryleigh would disappear to her bed, in tears, because of stomach pains, even while friends were visiting.  Then there was a Friday afternoon appointment with her pediatrician, she agreed that everything is point towards celiac disease.

I decide to schedule a GI follow up to decide our plan for retesting. The next day, Saturday, I couldn't stand to see her in pain any longer, my only option was to remove gluten from her diet immediately to see if it helped.  With in 24 hours, the doubling Over in pain and tears had ended. That Monday I called for an immediate blood panel from her pediatrician. Celiac panel results within 3 days were higher than the first levels, GI follow up in a week, and endoscopy scheduled within two weeks.  I had to push for this all to happen quickly because I refused to put her back on gluten.

Ryleigh, at 5.5 yrs old, had a confirmed diagnosis of celiac disease.  I can see  people being scared and overwhelmed with a child being diagnosed with celiac, it's scary and a lot to take in, but I was also so happy to finally have an answer to years of symptoms for my baby. 

Any other family members diagnosed with celiac disease?


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

Ryleigh has taken a proactive roll in her disease with making sure she is always eating safe food and a safe environment.   She has grown 3 inches and gained over 7 lbs. She also has more energy for soccer, softball and gymnastics. I love seeing the changes in Ryleigh since receiving her diagnosis and gaining the understanding the importance of a gluten free life to live safely with celiac disease.   

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

It's such a guessing game with the constant worries of cross contamination, but just take it one day at a time and take the time to educate anyone that will listen.

Ryleigh, you are adorable!! And, Jack and I both LOVE baseball! I grew up playing softball and it's so much fun! Jack is starting his 11th season in baseball, can you believe that? Keep playing and having a ball! 

Mom, thank you for sharing her story and showing the frustration of getting diagnosed. This happens SO OFTEN. We were one of the lucky ones to get diagnosed from the pediatrician right away, but then I asked, "What next?" and she said, "You'll have an appointment with a PED GI Specialist." I remember the appointment was like 3 weeks away and I was like, "What?" There was no communication that Jack shouldn't stop eating gluten, so the day she told me, Jack's gluten-free diet started that day - the IMMEDIATE CHANGES IN HIS LIFE BEGAN. We did meet with the GI Dr. and he I both agreed by clinical trial (meaning his results from living gluten-free for the past two weeks) and his test results that a biopsy was not needed. **This is not the case for everyone. As parents, we just have to keep pushing for answers - that's what we do!

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