There are many things I expected when I started this gluten free journey. I expected to not eat out any longer. I expected to have to find new recipes. I expected to have to give up many of the things I was used to eating. I even expected to have to explain to everyone why I couldn't go out with them to certain places or partake in food at parties or barbecues.
Then there are the things I didn't expect. I didn't expect the weird things you find gluten in (like soy sauce, many medications, and even the glue to seal envelopes). I didn't expect the excruciating pain and other side effects that happen every single time I accidentally ingest something that contains or has touched gluten. I didn't expect that even a crumb could make me sick. And most of all, I didn't expect apathy and even antagonism in response.
As I write this, I am awake three hours after "bed time" because I can't sleep due to what feels like crunching glass in my stomach, nausea that won't let me leave the house, and other side effects I never expected wheat to have on a person. This is the reason I feel I need to write this and to let others know what Celiac's can do to a person.
A few days ago, I went to the hospital. I felt faint and dizzy and went to the Urgent Care JUST in case there was something wrong. Typically, any time I've used the hospital on the base, I've had excellent experiences. In fact, I know some of the people who work there (it's impossible to be on such a small base and not know SOMEBODY who works there...) On that particular day, though, I experienced the type of person with whom all those with severe food allergies must come into contact with eventually.
She wanted to give me a medication to help me feel better. Because I learned the hard way that many medications have gluten in them, I explained my "allergy" to her and asked her if we could check the ingredients prior to taking it. I offered to do this myself, because I have an app that lists all gluten free medications and their ingredients. All I needed was the specific brand and name. She rolled her eyes at me and left the room for a minute. She came back and then tried to give it to me again. I explained that I have an allergy to anything with gluten and that I'd be sick for about a week if I took it and it had gluten. She argued with me and then said something to the effect of "a rash isn't that bad of a side effect" and that I should just take it. She was extremely perturbed that I refused the medication until finding out what was in it.
Now, I know it's possible she was having a bad day or is just used to difficult patients and that I shouldn't take it personally...but this isn't the first time I've encountered someone who was so out of the loop when it comes to a gluten allergy. I mean, if I had told her I had a severe peanut allergy there is no way she'd have given me something that had peanuts in it, but with Celiac it was "just a rash." Unfortunately, with all the celebrities touting the "gluten free diet" people unfamiliar with the disease (even in the medical community!) believe it's not actually a disease, but just a healthy lifestyle choice. Oh, how I wish.
So I want to describe to you how being a Celiac has affected me, so that you are aware. (Keep in mind that it affects everyone differently.)
If I have even a small amount of something that has gluten (or has touched something with gluten) I usually know about it within a few hours. The first sign of being "glutened" is a panic attack. I had NEVER had a panic attack until around the time I was diagnosed with Celiac. The panic attack simulates chest pain and a huge adrenaline rush, mixed with an urgent sense of anxiety that won't go away, sometimes for several hours.
The next symptom that arrives is brain fog. At first I didn't associate this with the gluten, but after researching it I have found that most of those with Celiac also experience this. It's like my brain has been shut off. I can't remember what I'm doing, and have no ability to focus. On anything.
That usually doesn't matter a whole lot, because after the brain fog comes extreme fatigue. Fatigue that often causes me to fall asleep right then and there. Last month, I fell asleep while in the middle of eating dinner.
Then comes the pain. Nausea. Searing pain. Migraine. Heartburn. Acne. Cramping. Joint pain. Muscle pain. Stomach pain that feels akin to crunching glass. This lasts for several days, depending on how much gluten I came into contact with. Again, I know other Celiacs who have different symptoms.
I know this was probably more information than you ever wanted to read, but you probably know someone with a food allergy, whether it's Celiac or something different. Luckily, I have some amazing friends who are tolerant of the difficulties we have to work around. They aren't offended when I bring my own food to their houses, or when we have to choose "safe" restaurants. They understand if I can't go out because I got sick (which, thankfully, doesn't occur too often anymore!) Some of them even go out of their way to point out anything at the grocery store they've seen that might be gluten free!
I hope that this will help you to sympathize next time you have trouble understanding those in your life who have these lifelong food allergies, or even the next time you have to go out of your way to accommodate them.