Wednesday, September 20, 2017

Sweet Faces of Celiac Disease: Meet Jayden

Jayden is 12 years old and 
was diagnosed with celiac disease when he was 
6 years old.

At what age was your child diagnosed with celiac disease?

6 years old

What symptoms was your child having before being diagnosed?

Jayden's  symptoms progressed through the years. He had constipation from infancy on, anemia at 4, head aches from 4 on, and severe stomach cramps at 6 years old. Hindsight, after his diagnosis, many other symptoms Jayden had began to make a lot of sense. Tooth decay (highly acidic saliva), slow growth rate, distended belly/bloating, gas.

Any other family members diagnosed with celiac disease?

No

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

We really had to advocate for Jayden's health. He would be doubled over in pain daily as I sat by his side helpless, agonizing and worrying what could be wrong with my son.  His pediatrician would do testing for random things but I always walked out of the office feeling frustrated, like I wasn't being taken seriously. They would prescribe medications that he did not need and say come back in three months and then we will see. I was there almost weekly because my child was in so much pain. 

Finally we were referred to pediatric gastroenterology. He had a suspicion Jayden had celiac but his blood work for it came back negative. After that phone call I had enough and decided to take it upon myself to remove gluten from Jayden's diet. I didn't want my son to have to go through anymore testing, especially a biopsy.  Almost immediately the pain stopped. The gastroenterology Doc. told me Jayden indeed had celiac and at this point was symptom free so there was no need for anymore invasive testing.  

Jayden is a healthy thriving preteen pain and symptom free. He is a talented musician, playing guitar at local venues with his Dad all summer long. Jayden also loves basketball, fishing, and skateboarding. He's growing up healthy and strong and we couldn't be more proud to be his parents!

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

Google was my savior. I researched everything! Joined many on line groups and discussions about food and health. I included Jayden in shopping so he learned how to make healthy choices for himself. My once picky eater was suddenly and advocate for fresh eating and trying new "weird" foods. He was happy to share his snacks at school and show his peers how good it was.  
Becoming overwhelmed with how to feed a family when one suddenly has to eat so differently is very easy.  Especially holidays, parties and sleep overs. It does take extra thought and time to plan ahead and even make and take food just for your child, but soon enough it becomes second nature.

Jayden, I would love to hear you play! You look great kiddo - keep smilin' and keep playin'. 

Mom, I'm so happy you followed your gut and made sure Jayden was on his way to feeling much better. It can be a frustrating diagnosis - for some it's easy and others, it can be more invasive. I'm just happy he's doing so well. 


1 comment:

  1. This is very sad to hear about the child and the disease he got suffered from. This is a good step you taken to share the details here so that others could get aware of it as well.

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