Tuesday, May 24, 2016

Sweet Faces of Celiac Disease: Meet Cole and Ella

Ella was diagnosed at 7 years old with celiac disease. Her brother,       Cole followed, and was diagnosed at 8 years old. They're now 9 1/2       and 10 1/2 years old.

What symptoms were your children having before being diagnosed?

Cole had headaches, body aches, constipation, stomach aches, asthma and ear infections.  The stomach aches were the last symptom to appear.  

Ella was very lethargic, vomiting, loose stools, very large tonsils that were removed and stomach aches. 

Both has somewhat distended bellies as toddlers but I just thought that was how they were built, looking back. She also has had chronic low iron. It was the kids stomach aches that prompted us to seek medical advice.  They both are also borderline ADD.

Any other family members diagnosed with celiac disease?

No.  Mom and dad both tested, maternal grandmother, maternal aunt, and 1st cousins, paternal - have been tested.  No genetic testing has been done, yet.

How has their lives changed since being diagnosed?

They both are 100% gluten free. 

Ella was most uncomfortable with the stomach aches so I had her looked at 1st.  I had heard of CD  and asked the Dr. if it was possible that she could have this.  After looking at her symptoms/history he said, no, I really don't think it's that.  I insisted that she be tested for it.  When we went back for the results he was shocked!  He associated CD with, "failure to thrive" and since she grew (slowly) he didn't think she was a candidate.  Ella underwent a endoscopy after her blood was tested and found she had the "classic tile floor"-her villi were destroyed. 

We had Cole blood tested shortly after and his IgA levels were even higher than his sisters.  Cole didn't have to have the endoscopy.  Since being diagnosed life has changed dramatically.   Ella's energy returned and stomach aches stopped.  Her digestive issues resolved and she no longer runs to the bathroom during meals.  Cole's body aches/headaches resolved and the constipation got better but is still something we work on with drinking enough water.  He does get occasional migraines which I'm not sure is related or not?  His dad has asthma so I'm not sure if that was CD related or not.  

My kids are very aware of what they eat as they don't want to feel those horrible stomach aches.  They pack food to almost everywhere they go, we rarely dine out unless we are sure they will be safe.  They can not buy school lunches as our district has not introduced a safe GF meal option.  They did try but Cole got sick after pizza school served.  I have not seen it on the menu since as I think they discontinued it.  We would never try that again.  Cole is vocal about his restrictions where as my daughter does not want attention drawn to it.

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

Research!  I've spent countless hours on-line reading and chatting with others, it really does help.  Be vocal, let family and friends know what is going on and educate them as much as possible.  Cross-contamination was the biggest thing people didn't understand.  Some parents are still afraid to have the kids over when a meal or a sleepover is involved but I reassure them to call me with any questions and offer to send food with them.  Replace all the kitchen items that have been glutened.  Get the entire family on the GF diet - it won't hurt anyone and it reduces the risk of cross-contamination.  They take a multivitamin, vitamin C supplement, Fiber supplement and probiotics.

WOW, way to be persistent Mom! We it comes to our children's health, we have to take action and go with our gut! Thank you for sharing their stories and showing others that siblings can have very different symptoms. When a family member tests positive for celiac disease, immediate family members should get tested as well! I'm happy they have each other on this journey together. As they grow and have families of their own one day, they will appreciate it even more. Best to you, Ella and Cole!! I'm so happy they are feeling so much better. Have a great summer!! 

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