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Celiac Success Stories |
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Tell us about your symptoms before you were diagnosed with celiac disease?
ln 1999, I was 32 years old and feeling like I was about 65. I was about 40-50 lbs. under weight with yellowing skin, anemia, blood pooling in my eyes, migraine headaches, extreme fatigue, constant nausea and many other symptoms too numerous to count. I weighed close to 200 lbs. (6' 2" tall) in high school and set out to lose a few pounds after graduation—my goal was to get to 185 lbs. With some determination I reached my goal within a few months and maintained my ideal weight for a couple of years. Around the age of 23, I started gradually losing weight (a couple of pounds per year) and really did not think much of it—other than mild fatigue (which some people labeled as being lazy), I did not exhibit any worrisome symptoms that would make me think something was wrong. In 1995 I started donating blood on a regular basis and after about five or six times, I was told I was anemic and that I couldn't give blood any longer. The doctors attributed this to the fact that I had given a lot of blood that year. Again, I didn't think much of it and stopped giving blood to give my body time to recover. At this point I weighed about 165 lbs—thin but still not unhealthy looking. I actually was very confident in the fact that I could just about eat anything and not gain any weight. I really used to pile it on, triple chili cheeseburgers, lots of pizza, basically a typical diet for a guy in his early 20’s. As the years went by and the weight continued to go down, I started to think that something was off—just not concerned enough to do something about it. Finally, in 1998, without health insurance, I started going to a doctor and asking questions about what could be going on with me. At this point I had the yellowing skin and the blood in the eyes and was getting a little scared. The doctor decided to test me for numerous things (one test at a time to help me pay for the tests) including, hepatitis, AIDS, candida and some others that I don't recall. Celiac disease was not mentioned as a possibility. Hundreds of dollars later and no diagnosis in sight, I was getting desperate to find an answer. I ended up finding a job with health insurance benefits and decided to look for another doctor and get some more testing done. I remembered my brother had been diagnosed with ulcerative colitis and decided to go to his gastroenterologist. With the first five minutes of my appointment, the doctor mentioned celiac disease as a possibility. My blood test came back as "inconclusive" for celiac disease, I found out this was quite common. Next was the endoscopy and colonoscopy—the results showed that my small intestine was stripped clean of any villi. The doctor gave me a diagnosis of celiac disease and recommended the gluten-free diet. I consulted with a dietician and was on my way to give it a try. Tell us what has your life been like since being diagnosed with celiac disease? Within only a couple of weeks following the gluten-free diet my energy level was noticeably higher and I felt like I wanted to go out and do things for the first time is several years. Within the first month, I gained 10 lbs. Since eating wasn't making me feel sick at my stomach anymore, I found myself eating constantly, I felt like I was making up for lost time. After gaining 25 lbs., I realized that I better start controlling what I eat since I could quickly become overweight. That feeling of invincibility that I had when I was younger was no longer there. I still remember the first time that I dared to go to a restaurant. I was never one to ask a lot of questions about my food and was not interested in making a big deal about my illness. That all changed after one time getting food that was obviously not gluten-free. I had ordered something that I thought was gluten-free but had some cross-contamination issues or some hidden ingredient that I did not expect. I remember feeling like, oh no, not this feeling again. I ended up feeling worse than I remembered, I had cold sweats, a severe headache and the dreaded diarrhea. I remember telling myself, "this is what I get when I don't ask questions". There are still times when I still get sick from some hidden or unknown ingredient but to be honest, it is rare. The biggest problem that I run into at restaurants is waiters saying they know what gluten-free means but in reality they don't. I always ask as many questions as possible, even at restaurants with dedicated gluten-free menus. Most waiters are very helpful and will go out of their way to answer questions. If I get a waiter who seems bothered by it, I'll ask for the manager and that will usually correct the problem. Also, I always try to tip well for helpful servers, this is another great incentive for them to help out. I always feel that if they have a positive memory of somebody with celiac disease, they will be more likely to help the next person with celiac disease that they encounter. I'm now 40 years old and weigh a hefty 220 lbs.—it’s amazing what absorption can do. I'll happily take being a few pounds overweight to being dangerously malnourished any day. I feel confident in my ability to get a safe gluten-free meal just about anywhere I go. I'm sure there will be some accidents here and there and I'll get sick again, but at least I know what is wrong and how to correct the problem. One way that celiac disease has benefited my life is that I'm aware of every single bite I take and I usually know exactly what I'm eating—this can only be a good thing. Now that I've come to terms with how celiac disease effects my life, I am healthy and happy with everything that has happened.
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