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Welcome To Syracuse Celiac Kids

Earlier this year my son Connor was diagnosed with celiac disease.  Since infancy I knew something was wrong.  For every possible diagnosis we scratched off the “it could be” list, two more appeared.  I was frustrated that every time I went to the pediatrician with the same concerns, I was handed an identical copy of ‘Good foods and Bad Foods for Irritable Bowels’.  I can’t count the number of times I rushed from work because Connor was in the bathroom crying in pain at home or school.  I did everything the doctors said, so why was nothing improving and why were his symptoms flip-flopping?

One day in January while doing housework I turned on the TV for some much needed noise when a Dr. Oz segment caught my attention.  One after another, Dr. Oz listed symptoms on the screen and they all fit.  Celiac, Connor had celiac…  I am not into self-diagnosis but I knew I had to listen to my instinct mom-stinct, and immediately started researching.  Within a couple of weeks Connor was getting the blood test that later confirmed an extremely elevated tTG level.

As a parent there is nothing worse than helplessly watching your child suffer.  After his initial diagnosis and upper endoscopy, I was anticipating some difficult times but was motivated to stay positive for Connor and make this a positive journey for our family.  My initial and confident “I got this” attitude was quickly squashed as the reality of life became clear.  School, play dates, sleepovers, camp, travel, eating out, his growing independence, being a picky eater, depression and anger…the list goes on and on, and I felt like things were beginning to spin out of control.  Desperately searching for relevant help, I found a lot of local groups that are wonderful but lack a focus on children.  Luckily I found an amazing woman/mother who offered help if needed.  Just knowing that her support was available helped re-fuel my confidence.

Celiac is still very new to us and every day brings new obstacles, victories and lessons.  Through everything I have been constantly aware of a need for a readily available resource for families and friends of children living with celiac disease.  It’s difficult watching your child struggle, as well as knowing that there are more children and families in the same situation that don’t have the same resources.  My hope is that Syracuse Celiac Kids becomes a place for families and friends of children living thriving with celiac to go for recipes (Connor approved of course), local restaurants, local events, and so much more.  You know the old saying, “It takes a village to raise a child”.  If you have or know a child with celiac than please follow, contribute to, and share Syracuse Celiac Kids.

I can be contacted at SyracuseCeliacKids@gmail.com

 

Facebook, Twitter, and Instagram coming soon!    

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