Saturday, June 2, 2012

The Start of My Journey as a Celiac Momma

My journey as a celiac momma began in the spring of 2011 when my then 5 year old son was diagnosed with Celiac Disease.  Three weeks later, at my insistence, my husband was also tested and diagnosed with CD.  

My journey in diagnosing my son began years earlier, when he was only an infant.  At 5 weeks old he was diagnosed with iso-immune hemolytic anemia and was admitted to the pediatric oncology/hematology department where he received blood transfusions.  Months of regular blood tests followed to determine whether or not he would require further transfusions.  When he was born, my son was in the 78% for height.  By age 3 he was in the <3%, at 4 years of age <3%, at 5 years old he was up to the 5th%, and at 6 years old was up the 6th percentile.  As we head into this summer he will turn 7 and will have been on the gluten-free diet for 1 year.  It will be interesting to see where his growth "stands".As a toddler he was diagnosed with short stature, a speech delay and fine motor delay.  We now know that these speech and fine motor delays are very common in young children with CD.  

My initial responses were varied.  Relief at finally having a diagnosis after 3 years of countless visits with our pediatrician, a variety of x-rays, multiple blood tests, consultations with a pediatric endocrinologist, a pediatric gastroenterologist and invasive blood hormone testing.  However, with my relief also came overwhelming sadness that my son had a "disease", he wasn't "perfect", her would never be "healthy".  I cried tears of relief, sadness, anxiety, guilt and fear.

But then, I got over it and got busy educating myself.  I decided to stop feeling sorry for my son and the life he could never have - the birthday cakes, classroom cupcakes and pizza parties he would never enjoy,  the beer with his college buddies that he could never have - and instead embrace the life he will have.

My intention with this blog is to provide helpful and useful information for families who are also on this journey; to better educate school administrators and school nurses, to raise awareness and to help make life a little bit easier for all those living with Celiac Disease and for the people that love them.

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