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Celiac Success Stories |
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Tell us about your symptoms before you were diagnosed with celiac disease?
I had always had what everyone, myself included, referred to as a “funny tummy”. I remember my mother saying that she would have to make my baby food from scratch because off-the-shelf versions did not react well with my digestive system. My food allergies would continue through adolescence where I would be allergic to various food preservatives over time that seemed to cause reactions of varying types. In my teenage years through college and graduate school I was always exceedingly thin. I remember being a consistent 28” waist with my weight hovering in the 150-155 range. I looked skeletal and could not understand how everyone else around me, particularly at college, was adding the freshman 10-15 pounds from all of the poor eating choices, late nights, and partying. I always had regular physicals with my family doctor and nothing ever showed up. I chalked it all up to having a speedy metabolism and thought it great that I could wear sample sizes off the rack, eat and drink whatever I wanted and not have to worry about gaining an ounce. In hindsight I remembered having intestinal reactions of varying severity after meals or hitting the bars. I also lived abroad for extended periods and travelled the world extensively and my “funny tummy” always managed to come along for the ride. I tried everything to alleviate my symptoms but not knowing the exact cause made it a challenge. While I enjoyed eating literally anything in any quantity, I did not realize that I was slowly destroying my digestive system and jeopardizing my permanent ability to properly absorb nutrients. Also, not knowing what would cause a reaction made going out annoying because I never knew when a reaction would strike. I have been everywhere from alleys in China to Egypt to the opera when the infamous “reaction” kicked in. Needless to say it was not fun. Tell us what has your life been like since being diagnosed with celiac disease? I feel like my life turned a full 360 degrees since my diagnosis. To start, as Celiac awareness grew, even before my formal diagnosis, I began to monitor more specifically when my reactions were occurring and trying to identify what might be a trigger. I think it was probably the Internet that led me to even the remote possibility that gluten might be the culprit. To be quite honest, I never even thought that gluten could be a culprit. I think the defining moment, which I remember vividly was having a beer or two prior to seeing a show on Broadway and barely being able to make it to intermission. I remember the pain, the sweating, the hoping the scene would end. I actually had to jump-up, climb over a good 8-10 people because the discomfort was unbearable. That moment was probably the moment which led me to proactively take control of my situation and ask my doctor if Celiac could be the cause. Turns out, after testing, it was. To add proverbial insult to injury, shortly after my Celiac diagnosis I developed a deadly allergy to something I had regularly enjoyed – shellfish, all shellfish. So my Epi-Pen is never far from reach. Since my diagnosis I have been enjoying life without having to worry if a reaction was going to happen. Also, I feel better – whatever that means. I am no longer skeletal, quite the contrary. I now have to watch my weight, particularly given the calorie-full, rich gluten free options that are now part of my daily life. In the beginning it was most definitely a challenge and there was a huge learning curve in educating myself as to what gluten meant and what ingredients it was in and at the time this was no small task. It was interesting to note that eventually I became extremely comfortable in living a gluten free life. However, the challenge was getting others to understand what Celiac meant and what I could and could not consume, particularly when dining out. We have come such a long way and I enjoy going into a restaurant now and actually having a chance of receiving a gluten free menu. We still have a long way to go as getting widespread understanding here in the United States but it is happening and one day Celiac will fully mainstream. My goal since diagnoses shifted from fear and apprehension to taking control and living a full and fabulous life the way I want on MY terms. I don’t care if I am in New York or Dubai, I know I will be able to enjoy my locale, experience local flavors, eat myself silly and do it all gluten free. In keeping with this philosophy, and also to do my part in Celiac education, I have created a relatively new site dedicated to living a fabulous gluten free life and assumed the alter ego of Gluten Free Mike (www.glutenfreemike.com).
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