I feel like a crazy person at times. I get paranoid when my food or something that might come into contact with it, like my hand or a utensil, grazes a surface or an object that I know hasn’t been carefully cleaned or wiped down. What if there are traces of gluten on it, and what if I get symptoms from it? Some of the following are ways that I believe I’ve become exposed to gluten and gotten symptoms.

  • I tried in the car to eat some peanut butter cups without my hands ever coming into contact with the candy directly. It didn’t work. My fingers still ended up grazing them.

  • I had a container with a serving of frozen ground beef inside sitting on the counter. I had added hot water to it in order to defrost the ground beef. When I was ready to remove it and put it into a skillet for cooking, I washed my hands but moved the container and then removed the ground beef. I didn’t wash my hands between touching the container and the ground beef.

  • While I was driving, I had a piece of hair in my mouth, and I tried very hard to get it out without touching my mouth. I couldn’t do it.

  • I absently touched my hand to my mouth one morning while I was taking care of my cat, giving her fresh food, treats, and water as well as getting her litterbox cleaned out.

  • My mom, when making meatloaf, forgot to wash her hands after handling the packaging for the ground beef and before she touched the meat.

  • One evening, I had fixed my cat’s food on the counter but forgot to wipe it down afterwards. While making hot chocolate, I had brushed excess sugar from the counter into my mug so it wouldn’t go to waste.

  • At a restaurant, I held my cup to take a drink with the same hand I used to eat from a bag of chips that I brought in myself. Of course, the server grabbed the cup directly with her hands in order to refill it. I didn’t think about it until after I’d eaten.

Other reactions have taken me completely by surprise, where I’m just not entirely sure of the cause. The only explanation I can think of is that I had gotten careless in the preparation and handling of my food. In those cases, all I can do is resolve to be more careful next time. As I’ve stated before, I always have to be on my guard and aware of what I’m doing at all times when I’m preparing, handling, and eating food. Any little slip is enough to invite a gluten exposure.

I would post questions about reactions like this in a gluten-free group on Facebook with thousands of members and would get little to no response. You really do feel lonely in the gluten-free life when even your fellow gluten-free travelers can’t seem to identify with what you’re dealing with. I tried to do internet searches to see what I could find out on extreme sensitivity but came up empty…until someone mentioned the term “super sensitive celiac” in one of my Facebook groups. Searching on this term actually brought up some interesting things, a forum on celiac.com and a blog called Buffalo To Go. There was even a definition on the forum’s site for “super sensitive”:

“those who have been gluten free for at least 6-12 months and suspect they are reacting to lower levels of gluten than the vast majority of celiacs”

I kind of felt like this, especially when I discovered I could not handle probiotics that other celiacs could use safely.  Also, I found myself nodding my head vigorously as I was reading posts on the Buffalo To Go site, especially Gluten is Poo and Thanksgiving.  (Yes, my hands have become very close friends with soap and water over the last couple of years.)  Even though I don’t have a diagnosis of celiac disease, I wonder if I could be considered “super sensitive”. When I went to my current gastroenterologist for the first time and told her about some of my reactions, she seemed blown away. She even told me that she would not recommend a gluten challenge to test for and diagnose celiac disease because such a challenge would leave me “half dead” (her words). One thing that seems to set me apart from others who deem themselves super-sensitive is gluten-free processed foods, where it seems many have to give them up altogether due to reactions to the minute traces of gluten that could be in them. Even my gastroenterologist, when she found out about my level of reaction, asked me how I handled them. I can count on one hand the number of times I could potentially trace a reaction back to a gluten-free labelled food. Even some of those could be called into question because they happened so long ago, before I uncovered other ways I was exposing myself to gluten on a regular basis. I consider myself fortunate in this regard, because if I had to begin questioning gluten-free labelled foods, I would be terrified. I wouldn’t know which foods to trust and which ones not to trust. I’d be playing Russian roulette with each new thing I’d try. I guess, like with the probiotics, I’d have to find a way to find some common thread and then contact manufacturers to check on that specific thing (or things). So far, I’ve been fine with gluten-free labelled processed foods as long as I take the proper preparation and handling precautions.  Perhaps I’m also wise with which ones I choose to try, and perhaps I’ve not eaten them often enough to cause reactions.

So, should I consider myself “super sensitive”? I’m not entirely sure, but I do know from reading those forum posts and the posts on the blog, I certainly feel less alone out there in the gluten-free world.


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