Today’s prompt is slightly more difficult for me to write. My celiac disease diagnosis isn’t even a month old yet. I have only felt marginalized or stigmatized a couple of times. However, I do feel more like I am a burden when I go out to eat or I feel left out at work when food is brought in and I can’t have any.
I struggle with going out to eat because I can no longer go anywhere or order whatever I want. I hate the fact that I have to order special items and ask a million questions. I hate having to tell everyone that there is something wrong with me. That my body doesn’t work properly. It gets very frustrating and sometimes I wish I had never received a diagnosis.
I have learned that I need to say I have celiac disease. We went to a restaurant that I had read was good for people with celiac disease. I asked if the chips were gluten-free and I made sure to order an item marked gluten-free. I did not tell them I had celiac disease and cross contamination could be an issue. I was about 3/4 through my meal when my digestive system was burning and I got a headache. I cannot blame the restaurant as I did not specify my need for gluten-free. Now if I were to go there again and specified celiac disease and need for careful preparation and I still got sick? Then I would blame the restaurant.
A time I felt marginalized or not really heard was when I requested a list of gluten-free items from a sports arena. I was given a list which only contained a few meals, the rest were all snack items. Of the three meals, two of them required leaving items off and I was not a fan of those two items. I went to order the third items, crispy wings (which leaves me questioning what is in the crispy wings because they are usually dredged in flour) and noticed the stand also had crispy chicken tenders. I asked if the wings and tenders were fried and the same oil. They were. I lost all trust in the rest of the items being actually gluten-free without cross contamination. I ended up not eating anything that night at the game and being miserable because I was hungry. The next game I ate dinner at 4 pm and had to eat again after because I was so hungry.
We have since contacted the team who forwarded our email to the company that does the food. They are going to revamp the menu in the off-season and add 6-10 entrees and 10-12 snacks that are gluten-free, which hopefully means there is something I can eat. I just hope they make sure there is no cross contamination and denote if items are fried in separate fryers. Cross contamination of even just a crumb can make someone with celiac disease extremely sick.
We also requested information from another sports venue but haven’t heard back. This other venue has a gluten-free stand but their menu board only had a few items. I just don’t get why I should be limited to 3-4 things, half snack items, because of something out of my control.
I also feel marginalized at work. Every Friday donuts are brought in. I can’t have donuts. They don’t purchase any gluten-free treats. They bring fruit but I eat so much fruit I’d like a freaking cookie or donut once a week. There is also a large work party being planned and I will need to bring my own food. They did not consider allergies when planning the menu and it is a buffet, which means even if there was something gluten-free there is a high possibility of cross contamination unless I am the first through the line (which isn’t going to happen). Also, while planning the idea of allergies and gluten-free was brought up but the answer was, “there will be Mexican food”. Mexican food can be gluten-free but a lot of places here use flour over corn tortillas AND corn tortillas can contain gluten (why is beyond me). Plus, would they ask about cross contamination? Would they make sure the Mexican restaurant knows someone has celiac disease? I felt like they were far too dismissive of allergies and diseases. It did not seem like they cared. I was not at the planning committees but had a few coworkers who attempted to fight for me. I also looked up the Mexican restaurant and could not find them on any safe lists or reviews for gluten-free and celiac disease. I decided it was just best for me to not eat since I cannot guarantee no gluten and no cross contamination.
I didn’t ask for celiac disease and I certainly would not be on a gluten-free diet if I didn’t have to. I cannot imagine how difficult it was for people with celiac disease just a few years ago. There was almost no information and no gluten-free menus. Celiac disease affects about 1 in every 133 people. That is quite a bit and doesn’t include wheat allergies or intolerance. Not everything needs to be made with wheat/gluten. A lot of items just have gluten added for shits and giggles it seems.
I am going to struggle for a while with this because I feel so limited and I feel I cannot just go out to eat. I need to plan. I need to ask a million questions. I need to explain this is a disease not just a diet whim.
No one is going to fight for me but me. I need to accept that I have to tell people I am broken. I have to let them know my body hates itself when I have gluten. I have to be that person when it comes to eating out. It is hard and I struggle with it. I wish more people and restaurants were aware of celiac disease. I wish more people cared but they don’t.
Today’s prompt:
Tell us about a time when you felt marginalized or stigmatized by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did – what did you say or what would you have said to take back control and let them know the were out of line?
