We all leave our houses at some point and have to interact with the outside world. We have to interact with people when ordering food at a restaurant, talking to friends and family about what we can and cannot eat, and we have to talk to strangers about our disease. What words do we use? How do we describe our disease?
For me, much of what I do depends on who I am talking with and my relationship with them. I have a tendency to try to provide a lot of information to those close to me and less to people I don’t interact with often.
For close friends and family, I talk about celiac disease. I explain that it is an autoimmune disease that destroys my small intestine. I will answer any questions at any time. If going to their house for a meal, I am happy to provide a list of safe foods, modify recipes, and in general help with meal planning. I also feel comfortable saying that I cannot eat at their house and will bring my own food. This is where I am most comfortable asserting myself.
With this group, we will only go to restaurants that I know I can eat safely. Normally, these are 100% gluten free or nearly 100% gluten free restaurants. Maybe on a special occasion I will think about going someplace I cannot eat – but situation causes a great deal of concern and debate in my house. I would only allow this for a child’s birthday, but that’s about it! I’ve had a lot of debate about this too – maybe I’ll write more about this tomorrow!
Also, with this group, if there is a wedding, a shower, or other event where there is a catered meal, I will contact the host to ask them to contact the venue regarding a gluten free meal for me.
For just friends, I will talk to them about celiac disease as well. They get the same explanation and I will answer any and all questions. Although, here, I typically won’t demand they make a gluten free meal. I will ask what someone is making, explain the situation, and bring my own food. If they have the knowledge about cross contamination or other food issues, I might, maybe let them cook for me but they would have to be really special.
These are friends, but they are not inside the circle of gluten free trust. They know about my disease and understand, but I don’t feel comfortable making demands.
If going out to eat with these folks, I will request that we go to a restaurant with gluten free options. Most of the time, they will accept this option and we are all good. For special social occasions, I will call ahead of time to find out about food options and if the event can support my gluten free needs. If not, then I eat before and after and attend the event without issue.
For acquaintances or friends of friends that have invited us to a meal, this is the hardest of all. This is tricky because I don’t have a personal relationship the host. In this situation, I typically will eat before and/or after the event and explain I had a big meal earlier.
If it is a sit-down meal, this is even trickier. I might ask my acquaintance to contact the host on my behalf to make an introduction. Then ask the same questions about what the meal is and because of my disease it is really hard to get gluten free right without experience and would they mind if I brought something in that was the same?
If going out to eat or special occasions with this group, I can make excuses as to why I’m not eating.
Waitstaff or servers at restaurants are pretty easy to manage. If the place has gluten free options, I order from the gluten free menu and explain that I have celiac disease. If their eyes glaze over at that, then I talk about a gluten allergy. If they seem knowledgeable about celiac, then I reconfirm the gluten free menu item and go on about my day.
If the place does not have a gluten free menu, I order something that should be pretty safe – a grilled protein without sauce and minimally processed sides like a baked potato or roasted veggies. I ask if they can make something gluten free – sometimes they can or the chef will come out to talk to me. But for the most part, I can get a pretty safe meal almost anywhere.
If the place is higher end, I expect to not be cross contaminated and them to get my gluten free order right. If restaurant is medium or lower end, I know I’m taking more of a risk.
Celiac is hard. I don’t need to make it harder by making everything about my disease. I want to make sure I get a safe meal every time I eat. I am not going to put myself at risk. At the same time, I don’t need to isolate myself or make other’s feel bad because I can’t eat. It isn’t their fault I can’t eat and it isn’t mine either – it just is. I want to go to enjoy the company and the event more than I want to worry about eating.
I’m not gonna lie, there have been times I’ve left places and cried because I was hurt or frustrated because of this disease. There are times I’ve thought I’ve done it all right and still gotten sick after a meal. There are times I’ve turned down invitations because I was unsure of myself. I’ve also been surprised at the generosity and kindness people will offer. Sometimes people will bend over backwards to offer a safe meal and it is always, always appreciated.
Over time, I’ve gotten better at navigating these social situations and I hope you will too! Good luck out there!