Living the gluten-free life has brought about many painful adjustments over the years and has also made me realize a few things. I’m generally an impatient person with a very short fuse who hates waste. This kind of personality is not a good fit for this kind of life. My patience has been tested in many ways, and it has definitely failed. Also, what I’ve ultimately been working toward is dealing with all the sources of constant or near-constant exposures so they would become a rarity. In turn, I would get to where I was feeling well consistently, my skin would be clear, my nails would be strong, and everything else would generally be where it needed to be. I’m beginning to realize and think that the numerous exposures are just going to be my life, my new normal, and that I’m going to have to find the best way I can to live with them. To me, it’s starting to seem more and more unlikely that I’ll ever be able to be symptom-free for any length of time because of my level of sensitivity.
Having to be so painstakingly careful during preparation and consumption of food has definitely taken its toll on me. I get angry because any normal person would not have to do these things. A normal person can probably prepare and eat a meal in a fraction of the time it takes me. It takes me so much longer because of all the preparation I have to do to make sure the area where I’m planning to eat is clean and that I don’t handle food items or utensils with wheat/gluten residue on my hands. I get angry because of all the waste the level of sensitivity I have causes. Sometimes I have to throw out or give away whole food items because they somehow become contaminated. Food and pills get dropped on surfaces that may have wheat/gluten residue on them, and I’ve had to learn over time the hard way that those things just need to be tossed. I can’t just pick them up and eat them anymore like I used to do, just because I don’t want to waste them. Recently, I’ve had to throw out sandwiches, give away two batches of brownies, give away a gift someone gave to me that came from a bakery where it didn’t seem they really took cross-contamination into account, and give away a bottle of supplements because my finger grazed one of the pills in the bottle. Also, it’s hard to see others be cavalier about not eating food or just throwing it out when I’d love to be able to enjoy the food they’re willing to toss. My nephews are especially bad about not eating food that’s prepared for them and throwing out something just because they don’t like it while I’m sitting there wishing I could just taste the food they’re so willing to toss like garbage. Also, it’s hard not to feel like a failure whenever I have an exposure. I’m always thinking about what I should have done differently to prevent it, and I tend to beat myself up about it. I tend to get upset and frustrated whenever exposures happen. I’m trying to adjust to learn patience as I deal with having to handle things differently. I’m learning that food is not more valuable than my health. If I have to throw out something instead of eating it in order to stay healthy, then that’s what I need to do. It’s still hard, and it still hurts, but I’m trying to be better. When others throw out food or waste it, I’ll have to try to deal with my feelings the best I can and not let it bother me too much. When I have an exposure, it’s good to consider what I should have done differently because I could use that knowledge to prevent a similar thing from happening in the future, but for the present, I just need to learn to let it go and deal with it.
Since I started dealing with cross-contamination sources about three years ago, when I first realized it was a problem, it was always my goal to get rid of all the sources of exposure and
move on toward feeling well and healthy. Now, things just keep getting worse and harder to deal with. It seems I can hardly go more than a day or two without some sort of exposure happening. I know a lot of it is due to carelessness on my part, and I’m trying to find ways to deal with it and to keep myself safe. I’ve transferred my sugar, flours, and xanthan gum to canisters for easier and more fool-proof handling (and hopefully nothing got contaminated in the transfer). I cleaned out portions of my utensil drawer that I believe have become contaminated with wheat/gluten residue over time and washed anything I thought might have been contaminated
through careless handling in the dishwasher. I’ve started washing my can opener and scissors before putting them back in the utensil drawer. I’ve washed my potholders and wiped out the drawer where they’re kept. I’ve run the eye covers on my stove top and the oven knobs through the dishwasher, and I’ve wiped down the oven handle. My plan is never to touch the handle or knobs with unclean hands and never to grab a potholder without washing my hands first. I also don’t plan to sit anything on the stove top that may have wheat/gluten residue on it. I’ve begun setting aside an area of the counter for gluten-contaminated items and only use that area and a tray that I keep put away when not in use for them. I’ve also started washing food packages that can be washed before opening them. I definitely feel a lot more confident handling a washed-down package and using cleaned scissors or a clean can opener to open it. I also plan to give my toaster oven and oven a good cleaning inside as a precaution. Even though my toaster oven and oven have never been used to prepare gluten foods, they probably have gluten residue on or in them due to me and others touching or handling them and anything inside them with unclean hands. Any dish with gluten residue on the bottom may have also come into contact with the oven racks. I have oven cleaner and scrub brushes to get the insides cleaned out. I plan to wipe down the outside of the toaster oven as well. I’m also learning that I’m going to have to set aside my own portion of foods that are hard to handle carefully, like Hershey Kisses, and make sure to wash my hands before trying to handle them in any way. Just
recently, I opened a bag of Hershey Kisses and poured the contents into a container for myself. I opened up another bag to put into a candy dish for others to enjoy. In spite of taking all these steps and trying my best to avoid exposures, I’m going to have to deal with the possibility that they’re going to continue to occur regardless. Sometimes avoidance just isn’t possible. While I still hope they will become few and far between one day, I’m going to have to allow for the possibility that it won’t happen. Keeping that in mind, I’m going to have change my focus and my goal to finding a way to manage symptoms as best I can while dealing with sources of exposures as I think of ways to do so. Thankfully, antihistamines do help with some of the symptoms. I’m hoping that being more diligent in caring for my hands, nails, and skin in other ways will at least make problems in those areas less severe if they don’t ever completely resolve. I’m trying hard to use lotion on my hands whenever I can to keep them from drying out and hopefully to keep my nails from becoming too fragile. I’m also trying to be more diligent in washing my face at least twice a day and using the prescription creams my dermatologist wants me to use to get my skin into a better state even if it never completely clears. I hope to discuss with my doctors about the possibility of any long-term health effects of continuous exposures in case they do become my new normal. Hopefully the outlook will be a positive one (or at least won’t be too negative) and that I can somehow find a way to live with the exposures and their effects as best I can. It hurts having to let go of a dream that I’ve had for a long time, but it’s better than continuing to be disappointed and frustrated as my efforts continue to go unrewarded. Letting go of something that may never be can be liberating and can help me to direct my energies elsewhere, where they’ll be more constructive. I’m not giving up as much as I am letting go and taking things as they come and dealing with them as they come. If it turns out that something else is a problem and is perhaps the root cause of my current issues, then I will definitely formulate a plan to deal with it then, with a doctor’s help if necessary. For now, I just plan to deal with things that I know are causing issues and deal with anything else as it becomes known in the future.
The gluten-free life definitely comes with its fair share of painful adjustments and realizations. It’s been a hard slog to this point in time, but I’m hoping I can make the necessary adjustments, in my thoughts, feelings, and actions, to make living this life a bit easier. I’m also hoping that just letting go and dealing with things as they come instead of wasting energy on wishing, hoping, and fighting for something that may never happen will help lessen the stress in my life and will help me to live my life within my new normal, whatever that ends up being, as much as I can.
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