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In previous posts, I’ve mentioned that living gluten-free has caused all kinds of inconveniences, difficulties, and frustrations in my life. I’ve listed some sources of those difficulties, inconveniences, and frustrations below. They form the basis of why I hate living the gluten-free life so much.

Cross Contamination: This has to be the single thing I hate the most. It requires a ton of vigilance and care to avoid getting gluten through cross-contamination, and it’s very hard to be that vigilant and that careful every time I’m preparing or eating food. Many of my recent gluten exposures have been through careless mistakes with handling food during preparation and eating. My mind always has to be on what I’m doing. Tuning out and coasting along just isn’t an option anymore. Also, cross-contamination prevents me from enjoying food prepared by others. Even fruit and veggie trays sitting out on a table at a party or on a buffet are risky options. You just can’t know when that food at any point might have come into contact with something that has gluten on it, like a person’s hands or even serving utensils that were not properly cleaned to remove all trace gluten.

Increased stress and worry when eating/cooking: Eating and cooking are supposed to be enjoyable activities. Before I went gluten-free, I was beginning to enjoy cooking, baking in particular. Now, while I do still enjoy cooking, particularly when I successfully convert a gluten-filled recipe to a gluten-free one, it’s much more stressful because I have to be so very careful from beginning to end. Have all counter areas I plan to use been properly wiped down? Did I wash my hands after handling that bag, package, or container? Did I remember not to put a food package or container on the counter area where I plan on placing food directly? Did I wash my hands before directly touching any food? I have to pay attention to every action I take and be careful not to make a mistake, or the entire meal, dessert, or dish is ruined. I of course enjoy eating. Who doesn’t? However, I have to be really careful when eating as well, particularly if I’m eating finger foods like chips or a sandwich. My hands can’t come into contact with gluten at all, on food packages, from my lunchbox, my drink container, my mouse/keyboard, or anything else. My hands and anything I touch have to be (and stay) clean throughout the entire meal.

Gluten-Free as a “Dietary Preference”: I see gluten-free often lumped with other diets like Paleo, GAPS, SCD, Atkins, non-GMO, organic, vegetarian, vegan, etc., which are almost exclusively diets of preference. Gluten-free is seen as a similar-type diet as a result. People go gluten-free to eat more healthfully. They go gluten-free to lose weight. People on these diets of preference, even those who are gluten-free by choice, will probably not suffer any long-term ill effects if they cheat on their diets or go off those diets for any length of time. There are always exceptions, of course, but chances are there will be no harm done if they don’t adhere to these diets 100% of the time. Those of us who are gluten-free not by choice but because we have celiac disease or a gluten sensitivity/allergy must be 100% gluten-free 100% of the time, or we risk doing long-term harm to our bodies. Even the smallest amounts of gluten cross-contamination can cause us symptoms. I believe this is the reason people misunderstand those of us who are gluten-free by need and not by choice; they believe we’re on some kind of diet where it’s okay to cheat or go off it once in a while. They think we’re crazy when we ask for clean dishes, utensils, and surfaces before preparing our food, and they think we’re crazy when we refuse naturally gluten-free foods because we’re not sure of cross-contamination risk. The way we eat is a lot more in line with the way those who have to avoid foods due to allergic reactions have to eat, where even the smallest amounts set off a reaction. While we may not experience immediate, life-threatening reactions when we ingest gluten, those small amounts can cause symptoms or internal damage. If those exposures are repeated over time, the symptoms will become progressively worse. That’s why it’s so important to be 100% compliant 100% of the time on the gluten-free diet.

Burden on Family/Friends: Eating meals with family can be tough at times. I feel like a burden to them because I have to ask them to take all the precautions and care that I have to take when I prepare food, and remembering everything that one needs to do is not easy. For them, there’s the added complication of preparing food in a kitchen that is not gluten-free. They have to make sure that all dishes they plan to use are run through the dishwasher among other things. Also, gluten-free food is expensive, and for family members that may not be able to afford the extra expense, I feel bad asking them to spend the extra money. I do try to compensate for the added expense when I can or help them to come up with less-expensive alternatives. Also, a close friend of mine and I do a lot of things together during the week and on the weekends. I feel bad for him because there are places that he loves to eat that he just doesn’t go to anymore because I can’t go to those places. Most of the time now, he just runs out and gets fast food to bring back to the house. I’ve told him that I would be fine just eating at home or taking something with me if he wants to go to any of those places, but I think he would feel bad for me in that case. We did go to Ryan’s with my sister and her family once, and I just ate a Snickers bar while they enjoyed their meal. Of course I hated that, but my friend and family got to enjoy eating at a place they liked. I tried my best to enjoy being there with them.

Not Able to Participate Fully in Events Involving Food: Luncheons at work and potluck meals at church and at other places are tough. In these situations, I just bring my own food since anything brought in by others would either contain gluten ingredients or be contaminated with gluten. If I feel that the people at these events won’t eat something I prepare, I’ll just go to the store and buy a gluten-filled dessert to share. I’ll either send the leftovers home with someone else or leave them out in the break room at work for others to enjoy. If the location where the luncheon or potluck is held has a microwave oven, I’ll more often than not just bring a frozen dinner to heat up and eat. It’s the easiest and least stressful option, where I don’t have to worry so much about food handling. Of course, eating something like this while everyone else gets to enjoy the delicious food brought in for the potluck is a tough pill to swallow. At a luncheon at work, since I couldn’t go through the line with everyone else to eat, I just took a seat at the table by myself, waiting for others to take their seats after getting their food. It was hard not to cry while I was just sitting there. It also feels awkward going to a restaurant or event for a co-worker who is retiring or transferring to another job. If it’s someone I’ve worked with enough, I want to be there, but it feels weird going with my own food. If I was there with a group of close friends, it would be easier, but with people I may not be as close to personally, I always wonder what they end up thinking about me being there and not eating what everyone else is eating. I know not to care about what others think, but there is always a part of me that does care or at least wonders.

Paranoid about Every “Off” Feeling: Being tired used to be due to not sleeping well the night before or just having a particularly tough day at work. Now, if I feel a little fatigue or otherwise feel the least bit “off”, I start to question whether or not I’ve had a gluten exposure. I start going back through all the meals I’ve had to eat, what food I ate and how I handled it during preparation and eating, to see if I can find a point where I went wrong. I start to wonder about other possible food reactions as well. It would be nice not to worry so much when something “off” happens, that I can just write it off as something that all normal people deal with from time to time, but it’s hard to do when you’re highly sensitive to gluten. I can get gluten from just about anywhere and just about any way imaginable, so it’s very easy for me to become paranoid and start to worry about every little thing I do during the course of a day and that somehow, gluten entered my system doing one of those things.

Insidious nature of gluten reactions: When I ingest something with gluten, something that has really small amounts of it, I may not notice right away. I may feel fine and not notice a problem until days, weeks, months, or even years, later. The symptoms may come on gradually, so gradually that I may not even notice that something is wrong until a good amount of time has passed. I’ve been able to go a few days until maybe a week and a half on a probiotic that contains trace amounts of gluten. I didn’t realize that Synthroid was causing me problems until maybe a month and a half to two months later. I kept thinking the symptoms were being caused by something else, like hyperthyroidism or needing a probiotic to help calm things down. I didn’t realize until about three years after starting the gluten-free diet that wiping down my mouse, keyboard, and lunchbox with a disposable wipe was not removing all trace gluten and that I was getting gluten from my foods prepared for work when they were sitting in the refrigerator with its gluten-contaminated shelves, gluten that came from packages bought at the grocery store. I didn’t feel consistently well for some reason, and I eventually began to notice symptoms more and more after I ate meals at work. I finally traced the symptoms back to the aforementioned causes and found ways to take care of them.

Repeatedly troubleshooting and fixing issues due to gluten exposures and other food reactions: This is another thing about the gluten-free life that is so discouraging and frustrating. You feel bad, discover a source of gluten exposure, deal with that source, and start to get better. You feel great for a while, but then symptoms begin to re-emerge, and you have to track down yet another cause. I’ve been dealing with this cycle repeatedly since I first went gluten-free, and it gets exhausting. I honestly wonder at times if it will ever end. I’ve traced symptoms to gluten exposures and to other food reactions.

When you do feel fine, you always find yourself waiting for something else to happen: Deal with the cycle mentioned above often enough and for a long enough time, and you get to the point where you feel great and wonder how long it will last. You always seem to be waiting for the other shoe to drop, for the next thing that’s going to cause symptoms and get you on a search for the cause all over again. You want to enjoy feeling well and doing well on the gluten-free diet, but it’s always in the back of your mind that there could still be something else out there that has yet to be dealt with and that it will begin to cause problems sooner or later. You would love to let your guard down but feel you can’t. It’s probably a worry that will never go away or leave, or at least a considerable amount of time would have to pass being symptom-free before you feel confident that you’re finally where you need to be.

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