I first heard the term “Celiac Disease” on August 2, 1999. I was in a medical clinic looking like death-warmed-over and asking (or perhaps the word is “begging”) for an industrial strength laxative. The doctor was equally insistent that I have a colonoscopy and a series of blood tests first.
The examination revealed that I had celiac disease (whatever that meant) and that my only hope lay in lifetime adherence to a gluten free diet (whatever that was). The rather embarrassed doctor admitted that he had read about celiacs but never actually seen one, that my diagnosis came from his computer’s analysis of my medical tests rather than from his own expertise, and that the brochure he was about to give me would put me in touch with people who could explain “the diet” to me.
I left the office in a daze.I didn’t have the laxative that I had requested, the brochure didn’t help me in the slightest, and the thought of making a life-time commitment to any diet made my stomach more upset than it was before. During the first few days, I muddled through on a diet of eggs, unseasoned meat, vegetables, and cream-of-rice soup. But, IT WORKED!!! In three days I was feeling better. After a week I had more energy than I had had for the past decade. After the first month, I was seriously thinking about un-retiring and getting my old job back.
Although I was diagnosed at age 61, I am reasonably certain that I am a lifetime celiac. From earliest childhood , I remember episodes of fatigue, mental confusion, and poor physical coordination. In my twenty’s, I had lesions on my skin that were probably a dermatitis herpetformis . Celiac disease is a genetic disorder, but it takes some sort of traumatic experience to kick it into high gear, That happened to me in February 1996 when I was accused of a crime that might have meant imprisonment and certainly would have ended my career. I won’t go down that road except to say that I was not guilty and my enemies soon realized that there was not point in pursuing vengeance. But it certainly was a major shock. I “went downhill” (in every sense of the word) after that. I blamed things on my misadventure with “the law”, conflicts with my supervisor, the burnout that ever elementary school teacher faces, and the aging process. The real culprit was celiac disease, complicated with the fact that I was living in Germany, land of heavenly beer, delicious breaded schnitzels, gravies and sauces covering everything, and the best bread and pastries in the world. (Writing that last sentence made my mouth water). I retired in 1999 on the first day I was eligible to do so. I lost twenty pounds in the months thereafter — I blamed the stresses of retirement, but … I admitted that something was horrible wrong when I heard my wife discussing with the nephew the best strategy for getting me to surrender my drivers license. A few days later collapsed in front of my son and my grandchildren.
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Well, that brings me back to my diagnosis and the hectic weeks that followed it. At that time I lived in a small city with few restaurants or shopping opportunities. The nearest large stores were in three-hours away in Sacramento, California. I soon realized that my gluten free diet was better than the alternative but was going to get very monotonous unless I learned to shop online. I knew how to send e-mail, but that was about all. Fortunately my son was willing and able to teach me to use the internet for shopping.
About a year later, Paul set up a the embryonic version of this website, gave it to me for a Christmas present, and challenged me to get my celiac act together and share the information I had acquired. I took the challenge. As a retired teacher, I’m convinced that the best way to share knowledge with others. I hope you result has been useful to you.
I don’t have to remind you that celiac disease is a major nuisance — but (if we must have a chronic medical condition) isn’t it wonderful to have one that does not require major surgery or expensive pills, is not contagious, and will not get worse as long as you adhere to the gluten free diet.
I‘d like to publish more celiac stories and I thought it was appropriate to start with my own adventure. If you would like to share your adventure, please send me an e-mail at gfceliac@gmail.com.
Published 07/13/08
