I thought I would start my blogging experience with one most important thing about my life, my battle with Celiac Disease. I started having symptoms as child, with abdominal pain and joint pain, but my worst symptoms started when I was in my early twenties and continued until two years ago. As my symptoms became worse, I would see a doctor and a new health discovery would be made. I would feel relieved, thinking “at last,” I am going to feel better! This doctor had figured out what was wrong! Each time I would say “This must have been my problem." It wasn't all worthless though, some of the health problems that the doctors found over the years were life threatening and required emergency medical attention:
§ Bowel blockages
§ Cholecystitis
§ Ovarian cystic disease
§ Ocular TIA
§ Swollen lymph nodes
§ Pernicious anemia
§ Chronic diarrhea
§ Stool incontinence
§ Chronic fatigue
§ Nausea, vomiting
§ Headaches and disorentation
§ Rashes
§ Life threatening allergies
Since Celiac Disease has so many symptoms, it’s not unusual to be diagnosed with many different diseases; it mimics them so close sometimes that without the proper testing I might have gone through life never knowing that I had CD. I was given multiple diagnoses before I found I had CD:
§ Antiphospholipid Antibody Syndrome
§ Cat scratch fever
§ Mesenteric adenitis
§ IBS
§ Chronic inflammatory bowel disease
§ Overuse tendonitis (in my hands, wrists, and elbows)
§ Herpetic encephalitis
§ Shingles
(This is the short list)
Eventually I would realize that my doctors felt there was nothing they could do, and I would leave each doctor’s office feeling devastated that they couldn’t help me. All of the doctors I had seen had one prescription in common; all of them felt I needed antidepressants. I can’t say I disagreed, at times I requested them. The depression that comes with being in pain all the time can be debilitating. The medication helped me as I learned to plan my life around these new and often socially crippling symptoms.
Two years ago I was hardly able to walk, the joint pain had become unbearable. I felt beat down, depressed and too tired to care anymore; I just wanted to give up. I began researching my symptoms on the internet, it was then that I realized that I was not beaten yet. Still, it seemed like a long shot, but worth a try. I went to several medical web sites, entered my symptoms one at a time at first, checking each result against how I felt. There were so many symptoms, the results would get pretty crazy, and some actually made me laugh! Then out of sheer frustration I entered all of my symptoms on the search line, thirty of them. I didn’t have much hope that this would turn up results, I had tried it before with fewer symptoms with disappointing results, but when I hit “search”, just that action made me feel a little better. The search result was for Celiac Disease (CD), matching 28 of the out of my 30 symptoms listed.
I contacted a gastroenterology office; they said I could schedule an appointment with one of their doctors for a consultation. On the day I went to my appointment, I was introduced to the most unorthodox and surprising physicians I had ever met. At the end of our visit he let me know that he didn’t think it was all in my head, and the test would take place within the week. Thanks to this wonderful, unorthodox physician I was diagnosed with Celiac Disease.
For over 20 years I turned to the medical community to find answers. The symptoms of CD are so broad, and seemingly unrelated, that misdiagnoses are not only common, but expected. I know that my story is not uncommon, many CD sufferers had just as much, if not more trouble getting a diagnosis. In the United States CD is often ignored and rarely diagnosed. Had I been born in England, I would have known I had it from birth. There is no cure for CD, a genetic, auto-immune disease that has many associated diseases. The only treatment for CD is a strict adherence to a gluten free (GF) diet. Imagine, just a diet change! (Gluten Free mishaps may very well be another blog!).
It is unclear if some of my health problems could have been avoided if CD had been diagnosed earlier. It makes very little sense to ponder over that now, I look to the future and I feel better than I have in years. After almost two years of living gluten free, I have enjoyed a better quality of life and I have more energy and less pain. Before my gluten free diet, I would be in pain all day, I would pray the day would end so that I could crawl into bed. Now, I look forward to doing things, going places and in general "living" again. I will always have health problems, I will never be completely pain free, and I will never again eat what other people eat. I am glad that I didn’t give up, and that I had the courage to take the next step, getting tested.
www.webmd.com key work celiac, www.celiac.org, www.celiac.com, http://celiacdisease.about.com
