I have to admit that every time I run across someone talking about the positive aspects of living with celiac disease, gluten sensitivity, or a food allergy, I just want to shake my head or roll my eyes. I know and understand that they want to help those of us dealing with these issues to feel better about things, but their words just don’t ring true to me at all. Many of them just ring hollow. I think the main reason is that I see nothing positive at all about my condition. The only positive thing would be not having it at all.
Many of these people talk about having to learn to cook a new and different way and learning to enjoy it and relish it. While I can’t completely disagree, cooking, as I’ve discussed in other posts, has become much more stressful due to cross-contamination and having to be so very careful about how I handle food, food packages, utensils, appliances, and dishes as I’m preparing food so that nothing becomes spoiled. There are times I’ve felt like giving up and just sticking to things like nutritional shakes, packaged snacks, and packaged meals so I could more easily avoid the handling mistakes and the stress that comes with trying to be careful not to make them. I went a long while without preparing anything with my flours, xanthan gum, and sugar because I was trying to figure out how to deal with all the inadvertent exposures I’d been having. I got started back slowly by fixing single-serving items so that if something became spoiled, I wouldn’t be stuck figuring out how to get rid of the rest, by giving it away or throwing it out. Things seemed to go pretty well with those. Last night, I baked my first batch of homemade cookies in quite a while. When I tested the raw batter (and yes, I eat raw batter), I didn’t notice any issues. When I had one of the whole cookies, I didn’t notice any issues then either. Baking a whole batch of uncontaminated cookies felt like a huge victory to me. Now I’m just hoping I can keep them uncontaminated in storage so I can enjoy the rest of them! While it can be great learning to cook a different way, you have to be very vigilant and careful so that your lovely new kitchen creation doesn’t get spoiled by cross-contamination.
Many of these people also talk about learning to eat a healthier diet. Excuse me, but it’s not like I was constantly eating out and pigging out on burgers, pizza, cookies, cake, and ice cream before I began restricting my diet. I was trying my best to learn to eat healthy and restrict my daily calories to a reasonable level because I was trying hard to maintain a forty-pound weight loss. I most certainly wasn’t about to gain all that weight back. When going out to eat, I always tried to pick out healthy and low-calorie food items so that I wouldn’t derail my efforts. Going online to restaurants’ websites to look at the nutrition information for menu items greatly assisted me, and I tried to take advantage of this information whenever possible. I tried my best when eating at home on my own to prepare food at home rather than going out to get something. I ate out enough when I got together with my family and friends. I knew how to prepare meats, vegetables, and other food items for meals quickly and easily. I did have convenience food items like frozen meals that I would sometimes eat, but I would pick out options that included vegetables and lean meats/protein. Even back then, I was reading ingredients labels and nutrition panels to try to find the most nutritious and healthy options.
Some discuss the aspect that our condition can be treated with diet instead of medicine. This isn’t true in all cases. I believe my hypothyroidism is a side effect of my food issues, and I’ll be on thyroid medication for the rest of my life most likely. I need antihistamines to help treat my allergic reactions, and my Benadryl as well as my epi-pens are always with me in case I need them. The antihistamines have their own side effects, like drowsiness, that I have to endure, but taking care of the reaction symptoms is of paramount importance, so I just accept having to deal with them. Others take different medicines to treat other conditions caused by their food issues. While food can heal many maladies, it’s not always enough in some cases. It really depends on the damage done. While they’re not really medicine, I rely heavily on supplements, probably more than the average healthy person. I’ve recently doubled up on my vitamin and mineral supplements to help correct what I believe to be multiple deficiencies.
Other things that may be discussed are the excellent support communites, becoming stronger people, and being better at troubleshooting and solving problems. While I enjoy the support groups and the people I’ve met because of my condition, it would have been great to meet under different circumstances, like running into each other at Dragon*Con, at a church meetup, or something else fun. Believe me, if there was another way I could become a stronger person that didn’t involve some kind of trial or hardship, I would gladly take it. I know that trials and hardships are really what bring out a person’s strength and character, but I certainly wish it didn’t have to be that way. I’ve learned to troubleshoot and solve problems through the job that I do. In fact, my skills learned there have helped greatly in trying to figure out my food issues and navigate living with them. While I’m thankful to God for giving me these skills, taking care of me through my issues, and allowing me to figure out things without having to go for a really long time suffering from an unknown cause, I would have greatly preferred not to use my skills in this way.
Another thing that bothers me is that these people make it look like living with celiac disease, gluten sensitivity, or a food allergy is easy. They either gloss over or don’t really address the struggles that many of us deal with. They might say that things are hard in the beginning, but things get better and easier over time. It has been the exact opposite for me. Making the food swaps in the beginning was easy, but over time, as my symptoms got worse and as I had to deal with increasing levels of sensitivity, things got much more difficult. I’ve had to come to terms with accepting that I may just have to do my best managing symptoms and effects of reactions that are more likely than not going to happen despite my best efforts to prevent them, because of my extreme sensitivity. There are probably others who, like me, wonder what’s wrong with them because despite their best efforts to eat a healthy diet, to learn to cook, etc., they’re still struggling hard with a lot of things. Cross-contamination is such a big deal and such a big issue for me, and it’s difficult if not impossible to find places where cross-contamination at the level to which I have to deal with it is discussed. That’s why I want to put forth my best effort to lay my struggles out there, to show the negative side of my condition, so that others like me can know that they’re not alone in their struggles. Hopefully they can learn from some of the things I’ve had to work through, and perhaps I can learn from them as well.
I see absolutely nothing positive in having celiac disease, gluten sensitivity, or a food allergy. I see it as having to live with a difficult health condition that must be treated in order to stay healthy. If I ignore my condition or don’t treat it properly, I could end up with irreversible damage or other complications down the road. I may even experience anaphylactic reactions from the wheat allergy (and possibly others). I accept and live with my condition because I understand that it’s essential to my health and well-being to do so. I do not see it in a positive light. I do not love or embrace it. It is something I must deal with and live with as I travel through life. It is a limitation that keeps me from things that I would love to be able to do, things that others just take for granted. I despise it. Instead of killing myself trying to find something positive in something that is not positive in the least, I look to other areas of my life that truly do make me happy and truly are positive. For example, I have a wonderful job. I have great co-workers. I have a good support system in my family and friends. They have their moments because they don’t fully understand what I’m going through, but they do care about me and try to make sure my needs are met. I have a wonderful church family and home and am thankful to know that God is in my life and is there for me and takes care of me. I love owning my own home. I love my cat Cocoa very much. I live in a very nice town which is just the right size for me with plenty of shopping options nearby and other areas nearby with even more options. I love that my family lives in the same town and that we’re all near each other. We can see each other and get together often, which I love.
I don’t believe that we need to look for anything positive in our celiac disease, gluten sensitivity, or food allergies if it’s not something we feel we can do or are inclined to do. What’s important is that we understand these conditions must be treated and handled properly in order to remain healthy and to keep from developing other health conditions and complications over time. There are so many other things in life that are positive, from God, family, and friends to hobbies, pets, and many other things, that if we focus on these truly positive things in our lives, things that don’t force us to bend over backwards to find the good, we can live full and happy lives with a very difficult health condition that we can hate and despise all we want, as long as we’re treating it properly.
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