Living With Celiac Disease
I accidentally ate gluten, now everything hurts and I’m dying
Seven years ago I was diagnosed with Celiac disease and told I can never eat gluten. Gluten is in practically everything. Gluten can be in mints or gum or chips or beverages or even medication. There are different degrees of Celiac disease. Some people might have a mild reaction to gluten, while others end up in a fetal position on the floor of a public restroom, crying because a waiter lied to them.
Living with Celiac disease makes dining out next to impossible. I have to contact the restaurant, speak with the chef or manager, and make them understand I’m not just doing this for fun. The responses vary from “We can absolutely accommodate Celiac, my mom/sister/husband has it” to (and I swear this happened) “Well, we don’t DO gluten-free, but you can bring your own meal in, and that way your husband can still enjoy our food.”
I once made the mistake of trying a bit of my husband’s steak at a restaurant. The steak was served with a sauce which I discovered was made with a roux. A roux is a combination of equal parts butter and flour and is used to thicken sauces and soups. Flour is gluten. Gluten is bad for me. Fun night.
A waiter did really lie to me, and I really did end up in a fetal position on the bathroom floor of a Japanese restaurant, crying. It doesn’t take much, as my sauce adventure proves, to send me into a spiral of severe pain, cramping, and diarrhea. I hate it.
Being of Irish, German, and English ancestry, I love everything with gluten. I love pie, I love Yorkshire puddings, I love tea cakes, I love biscuits and cookies and crackers. And I love pasta. I miss pasta the most.
Yes, I can find all those things gluten-free. They taste okay, but they all have the strangest consistency, like paste mixed with sawdust. Oh, and in order to create a better mouthfeel (it doesn’t work), gluten-free products have extra fat. So not only can I not go anywhere near gluten, I’ve gained weight.
My husband and I are planning a road trip this summer. On top of mapping the route and finding lodging, we also have to research restaurants. I’ve checked menus, sent emails, looked at Google reviews from other people with Celiac disease, and so far, I’ve found ONE restaurant that swears I won’t die if we eat there.
If you are in the foodservice industry as a chef or manager, and someone with Celiac disease calls you to make sure you can accommodate them, please don’t get snippy. Please don’t become exasperated. Just tell them if it’s safe for them to eat there or not. Don’t lie, because depending on the severity of their Celiac disease, you could send them to the emergency room, where they might meet a very nice personal injury attorney.
Being diagnosed with Celiac disease is a shock, especially when you realize how many things contain gluten. It takes over your life. You hold up traffic in the grocery store so you can read the entire ingredient list on a can of soup. You spend hours on the phone, trying to find somewhere, anywhere you can dine out safely. I was depressed for months after my doctor gave me the news.
Celiac disease sucks, and ignorant people make it worse. We’re not doing this to inconvenience you or bother you. We don’t have a choice. Trust me, we would love to just order off a regular menu, but we don’t want to spend the rest of the evening curled up on your bathroom floor, weeping and in pain.
Celiac disease can be diagnosed with a blood test. If you have severe reactions to gluten (pain, cramping, fever), ask your doctor to test you. Sometimes, if your results are positive for Celiac, an endoscopy may be required. My doctor did not order any additional tests once my blood work confirmed the Celiac diagnosis.
To learn more about Celiac disease, including the fact that it’s real and not just something we came up with to piss off chefs and servers, please visit this link.
