It was about this time last year that I was last ‘glutened’ (a term used by celiacs to describe accidental injection of gluten).
It has taken me a while to learn how to navigate in the world gluten-free. I was overly cautious – until I learned that my antibody counts were normal. Then I ventured out a little more. I found myself missing eating out. I found myself avoiding group activities that involved food. Once my antibodies were down, I realized I could not live that way. I needed to be able to reach out – I needed to be able to eat at more than one place.
I found the app “Find Me Gluten Free” (https://www.findmeglutenfree.com/) to be a life saver. Whenever I’m someplace unfamiliar and need to eat, I pull out my phone and open up the app. It doesn’t show everything, but it often shows several places that are reasonable options.
I’ve learned that most fancy restaurants can address gluten free. Any good chef knows how to handle cross contamination. Most places won’t ‘guarantee’ gluten free – I think that is mostly a US fear of litigation issue. Some are better than others at saying “our gluten free menu isn’t appropriate for Celiacs” … which is a way of saying that our gluten-free menu isn’t really gluten free – it is just an excuse to charge $2 extra to substitute wheat for something that might have been gluten-free when it was taken out the package, but isn’t by the time they are finished cooking it! Ya, that does sound a little cynical.
I have learned to ask for the Gluten-Free menu if a place has one. I still need to talk to the server and be specific about my need to not have cross contamination – but it saves me a lot of time and heartache, as I don’t then see items on the menu that sound good but that I also cannot eat. So I don’t feel like I’m missing out as much.
I am still nervous when I travel. I need to bring my own food for the plane, but also a bunch of my own food for snacks and for breakfast. I miss out on the “free breakfast” at many hotels because they have absolutely no gluten free options. I’ve suggested to several that all they really need to do is have some GF cereal that they don’t put out for everyone (in the little boxes) and hard boiled eggs are also a great GF option. That being said, I usually bring my own breakfast anyways, because I cannot guarantee of finding something, and I cannot risk not having anything.
What this means is that travel takes a whole lot more energy than it used to. Attending conferences (which is something that I used to love to do) is also so much more challenging, that I find myself shying away from them. My dissertation writing has been a great excuse for me to say no to several that I was concerned about. I still do go to some, but I know that I will need to carry a lot of snacks and make my own breakfasts, and not count on getting anything for lunch – which is perhaps the hardest part – going to lunch watching others eat, or not going to lunch with the group and missing out on the social / networking time.
I thought this was to be a happy post – yay 1 year gluten-free – a great accomplishment. It doesn’t feel like a happy post. It isn’t something that will ever end. Research that came out in April indicated that they may have identified a virus that turns on celiac disease. For those that don’t know, celiac is a genetic disease – if you have one of the two genes you can get celiac – but not everyone does. Plus, if you have gene it can turn to celiac at anytime – so could not have it one year, and then find that you have it the next. This research is really promising for those who have the gene but not yet have celiac disease. It may mean that a vaccine can be developed so that those with the gene never develop the disease. That is pretty awesome news and definitely a break through.
There has been some research done on a “pill” or something you can take that might make it possible for the body to digest gluten and not have it react horribly. This would be sort of like the pills you can take for lactose intolerance. It isn’t there yet – but is also promising, in that it would make it easier to eat out without having to deal with the constant fear of getting accidentally glutened. It would make travel a lot easier.
From a home front, I’ve done a pretty good job managing to keep my home mostly gluten-free. My husband has a few things that he likes, so we segregate – but mostly he gets his gluten at work over lunch. He often goes out with his colleagues, and can eat as much gluten as he likes. I don’t think he really misses it at home – but for things like hiking, I’m sure he misses the ability to make a sandwich at home (or at the campsite – although with camping he will buy his own bread – it is just that I won’t even touch it, so there is no way I’m buying it and I do most of the shopping).
And so, there you have it. I’ve lived a year without accidental exposure. Here is hoping a make another one gluten-free.