Our Celiac Story

When my son, who is now 13, was about 18 months old he lost some weight without explanation.  This was distressing to me as a young mom but also concerned our pediatrician.  He ran a whole battery of test and one in particular came back positive.  A celiac panel test.  I had never heard of celiac and he told me that this particular test had a high false positive rate but he felt like we should follow up and he made us an appointment with a pediatric GI doctor in town.

When we went to the appointment the doctor took one look at my otherwise healthy son and pronounced that he did not have celiac-she could tell by looking at him.  Celiac kids have swollen bellies, chronic diarrhea and were generally sick kids.  What a relief!  She had me keep a food log for several weeks.  We had a follow up appointment at which point he had gained a little weight back.  She told me to be sure he got enough calories and sent me on my way.

Fast forward 8 years and I am sitting at the endocrinologist's office with a 10 year old boy who has not grown an inch or gained a pound in almost 2 years.  He was fast becoming the smallest kid in the 5th grade and was falling farther and farther behind.  We were testing to see if growth hormone shots would be beneficial.  Several weeks later the report from the doctor game back and stated that his growth hormone levels were fine and the only thing abnormal in his blood work was.....you guessed it...the celiac panel. 

Fortunately over the last ten years a new GI doctor had come to town and I immediately made an appointment with her.  She examined Will, looked at all his records and scheduled an endoscope.  His intestines she said were classically celiac.  Gluten free here we come!

I made many mistakes over the next year and half but that is another post for another day.  On to child #2! 

 My daughter's birthday is the first of March and because so many kids are still sick I usually scheduled her well check up for the summer time.  I had done that but there was a huge outbreak of the flu late in the summer that year and the clinic called to say I might not want to bring my well child up to there office!  So by the time that passed it was sick season again and long story slightly shorter it was almost two years between well visits for her.  She was now 9 years old and her growth chart should have showed her hitting that preteen growth spurt.  Just the opposite seemed to be happening.  She had grown almost none at all.  This rang all to familiar for my liking and I called our trusted GI doctor and scheduled an endoscope.  A few weeks later, the day before Thanksgiving, I got the call.  Now I have 2 celiac children  

So there it is, in long form, our celiac story.  We are for the most part totally gluten free.  There is a secret loaf of real bread hidden for my husband, but other than that no gluten in this house! 

I hope you will check back again as I share with you how our family copes and even flourishes Gluten Free!