Anatomy of a Celiac Patient

Anatomy of a Celiac Patient

My daughter, Whitney, went to college; shedding herself of the childhood encumbrances of parental oversight in the natural evolution of a young adult.  It was hard having our first born leave the nest. She was a joy to have in our home where we catered to the diet of a younger brother with Celiac Disease. Celiac disease is a digestive disorder causing one to be unable to digest gluten. Because Whitney'a health also improved while eating a gluten free diet, she had mostly stayed on it without complaint.

 Brett was diagnosed when Whitney was 9 years old. Since his diagnosis the whole house had been cleared of any glutinous products such as wheat (flour), barley, and rye so he wouldn't unwittingly pick up something toxic to himself and pop it in his mouth. Goodbye to crackers and cookies, cake and a myriad of other delightful foods.  Whitney, at age 9,  became the accidental beneficiary of improved health through her 4 year old brother’s diet.

Lest you believe that this was a sad, sad existence, you would have had to be there to see what an unfolding relief the diet came to be.  Like a jigsaw puzzle slowly completing itself, our family was healing from all our little ailments and miseries. Our family was going to the pediatrician fewer times each month; kids were being potty trained earlier; fewer days were missed in school for illness; bed wetting stopped; kids slept through the night; complaints of stomach aches disappeared; energy was restored to all of us. It was as if air was being pumped into a deflating life raft. It was a miraculous diagnosis and diet.

So when Whitney left for college, I didn’t foresee the complication peer pressure would present. It wasn’t long before Whitney’s roommates confirmed Whitney's doubts as to the necessity of such a strict diet. She ascertained that she did not really have a doctor’s diagnosis of Celiac disease and that it was her brother who had the disease, not her.  She started to resist the necessity of staying gluten free. I don't doubt that she decided that she wanted to have a definitive diagnosis. If she had Celiac Disease, she wanted it to be proven. She told me that she planned to go back on a regular diet and my heart sank at the decision from which I could not coax her.

Whitney had eaten gluten outside the home off and on, before leaving for college, when she was out with friends. I could see a difference in her health when she was totally gluten free but she was not convinced that she had a Celiac Disease. Our doctor had refused to test my other children for Celiac Disease after Brett was diagnosed because he said it was so rare there wasn’t a chance any more of my kids had it.  Also, it was an expensive test that the insurance wouldn’t cover without cause. I will say that prior to Brett’s diagnosis, my son Brad had been tested for Celiac Disease and it was inconclusive. I will address that later in my blog when I discuss Brad.

In Jan. 2001, Whitney addressed the problems she had been having for three years of college.  She had overwhelming fatigue, gastrointestinal distress, terrible breath, frequent urination, diarrhea, pale stools, occasional numbness in her extremities  among other symptoms. After trying to eliminate milk and fruit from her diet, she realized it wasn’t helping her over-all heath.  She went to the Dr. and was diagnosed with Celiac disease.  She had a biopsy at the University of Utah to confirm it. 

I keep hoping for a better, more conclusive, inexpensive test.

I keep hoping doctors will recognize the symptoms and have people tested for Celiac Disease.

Chances are, Whitney would have tested negative to the blood test if she had not gone 3 years on a regular diet.  Many false negatives have been found when the disease hasn't progressed long enough. But what a shame to lose three years of health unnecessarily. 

Celiac Disease is an inherited disorder. It seems realistic to test first degree relatives of those who are diagnosed. But, the bottom line is if no one can help you find answers; when all else fails, it makes sense to try a gluten free diet and see if it makes a difference.