Not everyone understands….

So, we have issues with gluten or maybe something else. We live in a world where food is dangerous to us. We think about food all the time and how it will affect us. We think about what we drink, skin care, hair care, what we touch, everything!!

The rest of the world does not view food this way. They don’t understand what gluten is. They don’t understand cross contamination. They just don’t get it. And we shouldn’t expect them to understand.

We all get frustrated. It is a pain in the buttocks to deal with this all the time and adding the stupidity and insensitivity of people doesn’t make it any easier. People can be mean especially to those that are different and when it comes to this “fad” diagnosis.

Think about how much we each learned about all of these issues after diagnosis. We didn’t just drop in and know immediately what we could eat. Most of us cried on our first trip to the grocery store. Most of us have two toasters, bought new pots and pans, threw away wooden utensils, and replaced plastic cutting boards all in an effort to keep ourselves safe. Many of us still struggle with social outings, family issues, and all sorts of other things associated with celiac, even though we’ve been at it for a while.

While we expect people to accommodate us, we need to exhibit some grace when someone doesn’t understand.

I always bring a gluten free dish to pot lucks, but never eat. Most of the time, I don’t even label the dish, because people don’t really understand what gluten free eating is like. At the end, when complimented about how good my dish is, I let them know it was gluten free. The shocked look is always priceless!

I rarely eat at parties because I never know how food has been prepared. I eat before and even sometimes after and I rarely explain why. I just don’t talk about it. The most recent time I was blindsided by being served dinner when I wasn’t expecting it. I talked to the host in the kitchen about my issue and she was very gracious. I explained I couldn’t eat the main course. I ate what I could and that was it.

When I go to a restaurant, I always make a reservation and let them know of my gluten issues. I pick a menu item that should be pretty close to gluten free before even thinking about ordering. I talk to the server to reconfirm what I ordered is gluten free. When the food comes, I reconfirm that it was gluten free.

Also, I think that it is inexcusable that a restaurant doesn’t understand gluten issues or allergens at all. While they may not get cross contamination issues, I still expect them to understand ingredients and what the top 8 allergens are. If I am at an upscale restaurant, I expect NOT to get glutened. If I’m at a mid-range restaurant, I know there is a risk but I always hope for the best.

If I’m talking to strangers about celiac, I try to break it down into as simple pieces as possible. If I need to know if something has gluten, I don’t ask if it has gluten. I ask if they used flour in the sauce or another thickening agent. I ask if they marinated the steak or chicken in anything. I ask about what they used to make the salad dressing.

With the gluten free fad still in full swing, there may be a backlash when we talk about gluten free eating. Somebody somewhere will say something nasty about our need to be gluten free. For example, one of the first people I told I had celiac disease, his answer was, “Oh, how chic”. I didn’t really feel that way, but okay. Some may say, “Oh we’ve been eating gluten for a millenia and this didn’t exist.” For me, I simple smile, think they are dumb, and move on. They aren’t worth my time or my breath to fight.

I do have bad days. I have days where people piss me off about this whole gluten thing. I have days where I am deeply saddened by the state of drug development and research. I have days where I simply want to cry. I vent to my husband and on this blog – you’ve seen my bad days. And after a day or two, I get over it. Because to be angry because someone doesn’t understand what I’m going through doesn’t really help anything. It just makes me sad and I don’t like being sad.

I think we need to give people some grace if they don’t understand our issues. Just the same as we don’t understand the issues someone with Multiple Sclerosis or any other disease might have, most people don’t understand what we deal with. A little grace and kindness for those that don’t understand might make our lives a lot easier. I have a million other fights to have and this isn’t one of them.

Anyway, more research posts next week if I can find them. I’ve sort of gotten ahead of the research on this. I hope soon I get really far behind because so much new research is coming out. 😉

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