For many, my story will sound vaguely familiar, if not eerily similar. Yet my story has several twists and turns most haven’t faced.
My diagnosis was 12 longs years in coming. I had a myriad of seemingly unrelated symptoms; explosive diarrhea within 15-20 minutes of eating, migraine headaches, nausea, chronic fatigue syndrome, firbromyalgia, and the list goes on. I was also gaining weight like there was no tomorrow, often 10-15 pounds a month. During this time I was diagnosed with several other diseases, among them pernicious anemia and Hashimotos’ thyroiditis, both of which are autoimmune diseases. (These diagnoses should have raised red flags to any physician, but alas, not so.) I was passed from specialist to specialist each dealing with a single symptom of my complaint and each one concluding there was nothing wrong since all tests were negative. Sound familiar? Most doctors would tell me that my weight gain was caused by overeating, when in reality I ate very little indeed. I was a dietician’s dream, having prepared meals low/fat free for years and faithfully watching my carb intake. I kept a food journal which confirmed my eating habits. Yet, the doctors insisted I “must be cheating” when no one was around.
Unfortunately, the medical system in which I found myself was focused on the care of one type of person – a soldier and as such, the physicians within the military medical system were 1) not trained to “look outside the box” and 2) taught that unusual medical conditions meant medical discharge. So when a female presents unusual or seemingly non-related chronic symptoms, she is most likely labeled a hypochondriac or troubled patient. Thus was my dilemma. Each specialist would give me medication to deal with a symptom and by the time I’d had enough, I was taking eleven different medications daily. I was so sick that I could no longer dare to leave the house for fear the nausea and diarrhea would strike unexpectedly. The medications made me feel worse. No wonder, I was on the equivalent of oral chemo-therapy! I finally took myself off all the meds and feel a bit better. I kept suggesting to the doctors that perhaps my symptoms were related and that a holistic approach to my problems would be in order. You would have thought I had spoken heresy.
When my husband retired from the military we decided to search for a holistic physician to see if I could find help there. This doctor was exceptionally thorough and during my initial visit I related all the symptoms, etc. that I’d been experiencing for over a decade. By this time I had gained nearly 100 pounds with no end in sight. Without a single test, he looked at me and said “I will bet my medical practice that you have gluten sensitivity enteropathy and most likely, celiac disease”. Proper blood, saliva tests and a biopsy confirmed his initial diagnosis. That was in February 2002. He felt that the weight would begin to come off once I was gluten-free and so I embarked immediately on a gluten-free diet. Within three days I found the explosive diarrhea was gone and I was nearly nausea-free. Within a week, my en tired house was cleared of all gluten products. It’s been that way ever since.
But my story doesn’t end there. Here’s the wrinkle. While I began feeling much better, I didn’t lose any weight. In fact, I kept gaining weight and no one could figure out why. I was at my wits ends – couldn’t walk up a flight of stairs without stopping two or three times to catch my breath, couldn’t walk the short distance to the mailbox without gasping for air, could no longer sleep lying down because of the pressure on my chest, had to use an electric cart to shop in the grocery store, etc., etc., etc., because I had now gained 150 pounds. I was sure I was going to drop dead of a heart attack or have a stroke. Every diet had had disastrous results, always gaining instead of losing weight.
After doing some research on the Internet, I decided that the only recourse I had left was to undergo gastric bypass surgery. My insurance company agreed to pay for it and I more than qualified for the procedure. After all the required medical testing was completed, I had the surgery on June 21, 2005. This is usually a 90 minute procedure. I found out later that at the end of the fourth hour of being in surgery, the nurse came out and told my husband that the surgeons had finished the “first” surgery and were now going to start the bypass surgery. When I was fully awake, the surgeon explained that when he began the exploration to reroute the small intestine, an 8″ inch section had disintegrated in his hands and that he’d had to do a bowel resection to get rid of the dead section. He said that the “damage from the celiac disease has been much, much more severe than anyone had suspected or seen”.
His remarks surprised me since I was under the impression that once you were gluten-free everything healed. But as he indicated, since I had gone all my life undiagnosed until I was 51, damage was already irreparable. I am exceedingly grateful to the holistic physician and my surgeons for their expertise and help in getting me well on the road to great health again. In the past 9+ months, I have lost 105 pounds with only about 35 pounds left to lose. I feel like my old self again with no celiac disease associated symptoms whatsoever. It’s great to be alive!