I hear about celebrities and others going gluten-free, and they tout it as a miracle. They’ve lost weight. They have a lot more energy. They feel better and more healthy in general. They may even have issues that have improved significantly or completely resolved. They make going gluten-free sound like the best thing since sliced (gluten-free) bread. They love being gluten-free and are eager to have others join them on the gluten-free diet.

Others have spent years being extremely ill. They would go to doctor after doctor to get a diagnosis for their debilitating symptoms. They finally find one who listens and diagnoses them with either celiac disease or non-celiac gluten sensitivity. They feel so much better gluten-free that they now have a new lease on life, and they don’t even think about going back to their old life. They’re now finally healthy and are much happier for it.

I spent years being…normal. I lived my life as the average person, with school and then work. I did normal activities with my family and friends. We ate out, or we ate home-cooked food at home. We enjoyed family and church potlucks. At work, I enjoyed events like holiday luncheons and birthday celebrations with my co-workers. We loved the food and the company. We enjoyed getting together to talk. It was a great way to get away from our desks for a while and just relax. I participated in these activities and thoroughly enjoyed them. Throughout of all of this, I never felt sick. On the contrary, I thought I was healthy. I always got good reports from the doctor, except for the occasional anemia that would show up or the slightly elevated liver enzymes. I ended up developing mitral valve prolapse as well as hypothyroidism. My doctor never seemed overly concerned about any of these. I started trying to eat a healthier diet and exercising daily. I was able to do “Biggest Loser” style workouts with no issues. I thought I was doing all the right things. I did have some symptoms that were bothersome and annoying, like acne and constipation, but they never disrupted my daily routine. I did however wonder why I continued to have these symptoms.

In the beginning, after cutting gluten from my diet, things seemed great. I thought being gluten-free was easy. My mom fixed gluten-free foods for us to eat at our weekly Sunday lunches. When we went out to eat on Wednesdays before church, I would meet up with them at a fast food restaurant and order gluten-free items from their menus. I would check the websites beforehand to see what I could order. I would pick seemingly safe foods like fruit and vegetables from buffets and at potlucks. I was really getting into things and thinking I had it all worked out. That was until about six months in, when things started going south, when symptoms started coming back with a vengeance, and I began to feel miserable, much worse than before I went gluten-free. It took a while to figure out what was going on, that I was continuing to expose myself to gluten from cross-contamination. I began uncovering a ton of ways I was getting exposed. I would resolve things, get better for a while, and then start getting symptoms again. I would have to keep uncovering more and more things. Things were no longer so easy for me. In order to stop the exposures and get better, I had to continue to give up more and more things and make more and more difficult adjustments. I was losing confidence in my ability to handle the gluten-free life. I was becoming more paranoid and more fearful. I continued to get more and more sensitive to smaller and smaller amounts of trace gluten. I ended up having to worry about it on hand-washed dishes and even on packages and containers from the grocery store. I’ve had to continue to make difficult adjustments to my lifestyle and my routine just to avoid the smallest amount of gluten contamination. I never would have thought it would be possible to be this sensitive. I never have any thoughts of cheating on the gluten-free diet because of my level of sensitivity. Who needs willpower when there’s plenty of fear about what could happen if I ate something as small as a communion wafer or even a crumb? My level of sensitivity makes life so much more stressful. I have to be insanely careful when I’m in the kitchen preparing food or when I’m eating food. I have to make sure my hands are clean before I handle food or anything that may come into contact with it. Any type of object or surface may have traces of gluten on it, and any of that trace gluten that I may pick up could easily make it onto my food and affect me if I’m not careful or aware. It becomes very easy for me to live in fear of the food I fix and eat. At times I dread going into the kitchen to prepare food. I hate having to prepare the next day’s breakfast and lunch every work night. I have to set aside plenty of time because of the extra steps I have to take to make sure nothing becomes contaminated. I still participate in meals at church, work, potlucks, and parties, but I bring my own food. It’s something that gets really old with time, as each time you wish and yearn for the ability to be able to join in with the others and enjoy the food that they’re able to enjoy. To add insult to injury, my acne at times even looks worse than it did before I went gluten-free. For even further insult, I had to cut even more foods from my diet. I developed reactions to guar gum and vinegar, and I have to avoid all foods containing either or both of these. I’m still waiting for my ship to come in, to experience resolution of my symptoms and be truly well.

People say that things get better and easier as time goes on, but I think the opposite has been true for me. I’ve had to change my lifestyle drastically over time to keep myself well, while normal people can get healthier and feel better just by making simple changes to their diet and exercise routines. I’m jealous of those who seem to have it so easy. I only wish that I could get by just by changing the food I eat and my exercise habits, as many of the celebrities who have gone gluten-free have seemingly done. Perhaps I would have a different perspective if I had been ill for many years. Perhaps all the changes I’ve had to make would seem a small price to pay to end years of extreme sickness. Since I seemed (and even felt) well and normal in my old life, there are times my old life doesn’t look so bad. To be able to live and eat freely as I had before would be wonderful. There is no freedom in the gluten-free life for me as I have to be concerned about anything that I may ingest or that may come into contact with my mouth. No, the gluten-free life is not a miracle cure for weight gain or lack of energy. No, it is not a blessing that has come along to end years of extreme sickness and suffering. It’s something that has come along to make my life more difficult and at times unbearable. It’s brought with it fear and paranoia, fear of what may be happening inside my body when I’ve been exposed to gluten, and paranoia about possible contamination and unexpected symptoms. It’s brought with it sadness and disappointment, as I’ve had to give up foods I love and fully participating in certain activities because of the food. It’s brought with it plenty of stress because I have to be constantly on my guard and aware when I’m preparing and eating food. At times it has also made me hurt and angry. It’s just not what it’s cracked up to be.

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