Trying to be careful without getting in my own way

I am super sensitive to gluten. I have known that for a long time, but it amazes me every time I get glutened. One time, the culprit seemed to be some grapes that someone (who had been handling bread) picked up and then put down, and which I then ate without realizing (until it was too late) that they had done that. This last time, I think it was gluten on my own hands that did me in.

Last month I wrote about starting a new medication and the difficulties in getting my doctor to increase my dose. What I didn’t know when I wrote that piece was that I had just been glutened. That might explain some of my increased anxiety, though not all of it. It definitely explains why I wasn’t responding enough to the medication. As soon as the gluten symptoms went away, I felt how much the new med was helping. That took 19 days. Yes, 19 days. Yikes!

For the first week and a half or so, I barely left the house. Then I started to venture out a bit as needed. The final week I was mostly ok, at least enough to resume most activities, despite the extra pain, fatigue, and bloating. After almost three weeks, the symptoms subsided. The thing is, once I realized that I had been glutened, I tried to figure out how it happened, and there was no obvious culprit. I had not eaten a single thing all week that didn’t come out of my own kitchen. I quickly narrowed down the possibilities:

  • Something labeled gluten free actually had gluten in it.
  • I didn’t wash some produce carefully enough.
  • Twice I ate a meal outside of my home. I brought the food with me. Maybe I got crumbs on the container and transferred those to my hands somehow, and then ate something with my hands.
  • I ate a sliced apple and after a slice or two I realized I hadn’t cleaned my hands.
  • I had a hair on my tongue. I did my best to remove it without using my fingers, just in case they were contaminated.

These all suck. They suck because I am already being so careful in each of these areas, yet I got glutened anyway. There’s no doubt that it was gluten, the symptoms were very clear. I will never know for sure how it happened, but I know that all of these are hard to avoid in the future.

Before this latest glutening I was incredibly careful. I promised myself that this wouldn’t change anything. I would continue to be as careful as I had been before, and I wouldn’t try to control things more. It’s not healthy for me to be so hypervigilant. It takes a severe toll, emotionally and physically, and it doesn’t stop me from getting glutened. It can’t. I will get glutened many more times in my life. I try to keep it as minimal as possible, but there’s only so much I can do, and I have to be realistic.

Yet I have found myself being even more careful over the last few weeks. I hate it, and I am trying not to let this control me, but I don’t know how to do things differently. I don’t want to get glutened again if I can help it, and knowing that it’s inevitable to some extent isn’t enough to make me relax when I am out and about.

For example, I played a card game with friends. They were all eating appetizers and cookies, and I was very aware that they were probably transferring gluten onto the cards that I was touching. I made sure not to eat anything without first washing my hands. That’s fine. The problem is how anxious I felt about touching the cards to begin with. It made me anxious to know I was getting gluten on my hands. I feel like my own body is constantly unsafe whenever I leave my home, and that’s no way to live.

I am trying not to worry about the many ways in which my own home is not completely gluten free. I am sure that my phone is contaminated from being out in the world. I don’t clean every item that comes into my home. Grocery packages probably have gluten on them. My purse probably has gluten on it. My winter jacket will probably have gluten on it. My library books probably have gluten on them.

And there is nothing I can do about any of those things.

I must learn to stop being scared of gluten. Yes, it can hurt me. It could even kill me. But I have to continue living my life, and I can not do that if I am always afraid.

I am trying. It is not enough, but it has to be enough for now. Because what other option is there?

2 Responses to Trying to be careful without getting in my own way

  1. fieryfibrogal says:

    I can’t imagine the anxiety all this vigilance must be causing. I don’t blame you one bit for any hypervigilance or worry that might seem excessive. In your case, the worry seems entirely warranted.

    I don’t know much about Celiac but I’m gluten/dairy sensitive and am constantly worried when I eat anything outside my home. Getting glutened “only” makes me sick for a day or two. You are a warrior.

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