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Cindy's Story

 
5/4/2011

I celebrated my 51st birthday with a huge piece of glu-taminated chocolate cake, knowing it would be my last. The diagnosis had come in only a few days earlier, with a perfunctory phone call from a nurse, whose only helpful advice was to "stop eating anything with wheat in it".  She made it sound so simple....

So, I turned to my younger sister for help. She had been diagnosed several months earlier, with not only celiac, but also ulcerative colitis, and that was only after a spectacular episode landed her in the hospital for a couple of days.  

My sister proved to be a much better source of information than the doctor's office, having done her research with characteristic diligence. None of what she told me sounded like it would enhance my enjoyment of life.  A long list of "can't have's," label-reading, and doing without.... I mentally began to weigh the possibility of continuing on as I had been, all the while knowing that if I did, I'd likely be dead much sooner than I wanted.  

The symptoms had become much more severe within the past couple of years, and I, who had always been underweight my entire life, was losing even more weight, and at a rapid pace.  It had to be the chronic diarrhea that was causing it, but not a single doctor in 10 years had been able to pinpoint the cause.  IBS was the usual response, but nobody seemed inclined to get to the root of what could be behind it.

My gut instinct (no pun intended!) was that it was something I was eating, but various elimination diets over the years didn't seem to help.  In fact, things got worse on the "whole-foods, vegetarian diet" I tried for 6 months. And no wonder -- the whole-wheat bread I was baking from scratch, and the whole-wheat pasta we ate to fill the meat void was unknowingly exacerbating the problem.

By the time I turned 50, it was more than just a lifelong history of being underweight, dealing with canker sores, a miscarriage, and the constant digestive issues.  Now there were episodes of light-headedness and near-blackouts; occasional numbness in various limbs; loud and bizarre noises emanating from my intestines after every meal; and an overall feeling of toxicity, like I was slowly being poisoned.  And I was…but by what, I had no idea.  

In fact, I had never even heard of celiac or gluten intolerance until my sister's diagnosis.  In an attempt to be supportive and informed, I did what we all do these days -- I googled "celiac." There before me was a list of symptoms that sounded so familiar, it was as if I had written them myself. It was my family doctor, who was also a personal friend, who agreed to run the initial blood tests shortly before my 51st birthday. The results were off the charts.

Three years later, the difference in my health is overwhelming.  Although a bone density scan last year revealed I already have osteoporosis in both hips, knowledge is power.  I am doing what I can do to combat it and keep it from getting worse.  Fortunately, all other symptoms are gone -- the strange noises, the diarrhea, the canker sores, the light-headedness, and that toxic feeling have all disappeared.  

Years of having a "leaky gut" resulted in a long list of food allergies, but as long as I am careful about what I eat, I can enjoy life so much more than I thought possible.  So while my diagnosis at first didn't sound life-enhancing, it turned out to be life-saving, and that's a diagnosis I can LIVE with!

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