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Daniel's Story

 
11/17/2008

Daniel's Story


Imagine a world where pasta, pizza and birthday cake are poison, and eating out at a restaurant is a calculated risk. Forget bread, cereal and cookies; they contain gluten, a protein found in wheat, barley, rye, and oats.

That's the world that three-and-a-half year old Daniel lived in, only his parents didn't know it. The wake up call that something was wrong came when his mother realized that her toddler wasn't growing out of his clothes like her other kids. The pediatrician confirmed that Daniel had not grown or gained weight in at least nine months. After doing blood work, the pediatricians concluded that because Daniel was a “picky” eater, he was probably not taking in enough calories and that perhaps his poor eating was behavioral -- you're not doing a good job feeding your son.

What a blow to his loving parents. Feeding Specialists delivered detailed instructions about mealtime. The lethargy, diarrhea, bad mealtime behavior and pale complexion continued. Daniel had a bloated stomach and was very thin. Frustration and feelings of inadequacy were a part of life for Daniel’s parents. It wasn't until an allergist said, "you should have your son tested for Celiac Disease" that they had some idea of the cause of his stagnant growth and lack of energy.

At Childrens’ Hospital, a positive blood test for antibodies and then a positive intestinal biopsy (a visual inspection of the intestines is the only definite way to confirm Celiac) confirmed Celiac Sprue. Daniel was not growing or gaining weight and had sickly coloring because he was malnourished as a result of the disease. His intestines were fighting to not let gluten in, and simultaneously his intestines were not letting in the nutrients from the food that Daniel was ingesting.

The diagnosis was made January 3, 2003. A strict gluten-free diet for life was prescribed. Living gluten-free was a simple concept but a daunting task. During Daniel's first check-up 90 days after diagnosis, his parents’ sense that he was feeling well and growing was reinforced by the jubilant exclamation of “Wow” by the otherwise monotone physician after seeing Daniel’s weight gain and growth recorded that day at his office. In January 2004, after just one year of living gluten-free, Daniel had gained 33% of his body weight and grew more than 20% in height. He now has the energy to go to the playground or participate in sports without quickly tiring. He is very happy, and even at five years old, he knows that he feels good and fully grasps the importance of his gluten-free diet.

Does this story sound similar to your or a family members? You might have celiac disease. Find out now, take our celiac disease symptoms checklist.

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