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Stumbling Upon Celiac Diagnosis

During the 1980's, medical schools taught that Celiac "Disease" was a very rare disorder, maybe affecting one in 6000 people.  As recently as 1993, studies estimated the incidence to be about 1 in 4500 to 7500 people in the United States.  Few physicians have been updated on just how common Celiac Syndrome really is.  My journey into learning more about Celiac started with this article in the American Family Physician magazine in December, 2002.  The title was very intriguing, “Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think,” written by a family physician from Little Rock, Arkansas. The article described all kinds of gut problems and arthritic problems and even funny neurologic things caused by a FOOD!
The article would have gotten buried in my mountain of other “interesting medical things to think about,” except that I asked my mother to take the article to her neighbor.  Her neighbor was one of my patients.  He had some funny neurologic problems that I could not explain.  I wanted to know if he was interested in being tested for Celiac Syndrome.  Well, of course my nosey mother started reading the article.  She called me later that day, all excited.  This is ME, she said!  This is ME!  She wanted to be tested right away.  Mom’s neighbor eventually tested negative.
But Mom’s blood tests were POSITIVE for Celiac Syndrome.  She had had all kinds of stomach problems over the years as well as bleeding from her gut on and off for no good reason.  She has rheumatoid arthritis.  Mom‘s 70th birthday party birthday cake was made of meringue cookies with nothing but sugar, egg whites and ribbons.  She loved the cake.  My mother’s husband, who also went on the gluten-free diet to be supportive, found out his overwhelming chronic fatigue syndrome to the point of disability was caused by eating gluten. 
About a year later, Mom convinced our teenage daughter, Maraya, that she needs to go gluten-free, no small task.  Mom bugged Maraya continuously for six months until Maraya relented, probably just to get grandma off her back.  Convincing her to give up gluten as a trial was actually easier than convincing her to put out her arm for some blood tests.  She is a gifted young lady, but has struggled with ADD, attention and concentration for years.  Eleventh grade was particularly tough for her because she was always sick with something and always tired.  Sometimes she would talk so fast you couldn’t understand what she said.  I used to say, “Maraya!  Slow down! I can’t understand what you’re saying.”  Now I say, “Maraya, slow down and what did you eat!”
Once I could see Maraya was better off gluten-free, I figured it didn’t skip generations so I started on the gluten-free path as well, even though my blood tested "negative."  Oldest daughter Rita tested positive a few weeks later as a result of working up why baby grandson Ricky was not gaining weight with lots of stomach problems and diarrhea after weaning from breastmilk.  He’s been tested several different ways, but so far the tests are negative.  Keeping him off gluten does help him, and now he's growing well.  They’re not sure yet if he has Celiac Syndrome or something else.  But it sure looks like it's "all in the family."  Testing for Celiac Syndrome can be very tricky.  In any case, trial and error taught me that gluten is NOT my friend....sigh.....
Rima Kittley, MD, FAAFP, ABHM
Lufkin, TX
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