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Katie's Story

 
12/3/2010

Katie is our third child and by far was the easiest baby out of all of them.  She was happy, healthy and an all around little angel.  Things seemed to change, though, when she reached 10 months old and we introduced solids.  She started to have diarrhea and occasionally threw up.  She went from angelic to cranky and fussy. 
Our family doctor took her off solids and told us it was possible her digestive tract wasn't mature enough.  So we went back to processing her food, but this did not improve the symptoms.  She was taken off milk and, for a short time, this seemed to make a difference, but the symptoms soon returned.

Our doctor referred us to a pediatrician. Blood work and stool samples were ordered, and all came back negative. These tests would be repeated countless times over a 10-month period.  We saw two different pediatricians and an ER doctor - one night she was so lethargic that her vomiting didn’t waking her. 
We heard the same thing over and over again, her tests are normal, she is gaining weight and is not dehydrated, there's nothing wrong with her.  She was gaining weight, they were correct, but she was born just off the growth chart and had never gained enough weight to climb onto the chart; she just always gained enough to follow the line at the bottom.  As her younger cousins passed her in weight and size, I became increasingly frustrated.  What had started as diarrhea had now grown in to total water diaper blow outs, sometimes 8-13 times a day.  Still, we were told there was nothing wrong.

I finally packed my daughter up and drove to Children's Hospital Emergency.  It was the weekend and, although troubling, she was not dehydrated and was not an emergency case.  Within 2 hours she had 12 explosive diapers, enough to require us to change rooms, as she had made such a mess of the bed.  We were referred to the gastro clinic and two weeks later we were seen.

All the tests were performed again, and once again the doctor ordered blood work for celiac disease.  We returned a month later with no improvement in the diarrhea and all the tests were negative.  An upper GI test was booked.  Another month past and we went in for the procedure.  Two days later, we learned the test came back negative. Katie was blood tested a few more times after that, but they always came back negative.

Finally, it was decided to do a 30 day gluten-free trial.  Within days, we started to see improvement.  Katie was happier, more energetic and had only one or two bowel movements a day.

A few weeks later, Katie was switched from the GI clinic to the Celiac Clinic at Children's Hospital.  She is doing so much better and gained 2 pounds within a month, a feat she had never reached, as we were always counting her weight gain in ounces.  She goes to the bathroom once a day and, although not perfect, she is getting on track.  It has been an entire life change for all of us.  My husband and I have both stressed over it, wondered what the future has in store for all of us.  Everything changes now: vacations, family dinners, play dates, etc.

We are very excited, though, that our family will be enjoying a trip to Disney World. Our plans changed slightly, and we are now staying in a resort with a full kitchen so we can do our own dinner.  We are planning on taking our own snacks into the park, and for our lunch with the Disney Characters we have already contacted Disney. They said they will make sure to have gluten-free items ready and waiting for the day we attend.

We always knew Katie was our special angel, we just never really knew how much!
 

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