The normal response to people finding out someone can’t eat gluten is the lamenting of lost bread and cookie opportunities. But actually, there are a lot of good breads and cookies in the grocery store and thousands of recipes out there as well. That’s not the hard part, but it’s the most visible.
The things that are the hardest to accept are the more invisible ones. The foods that you only ever had on occasion or things that were reserved as ‘restaurant’ foods. Because of issues of cross contamination, I can’t order most anything fried at restaurants, even if it isn’t breaded. This means with my bun-less burger I get a side salad, no french fries. That means no milkshakes (on top of not doing well with dairy) because of malt flavoring and mix ins that can end up in my ice cream. This means having to say no to the lovely Lindt truffles my professor brought for the last day of class (it’s that damn barley malt again). It means not being able to have chips and salsa at Mexican food restaurants, unless they have special gluten free ones like Maudie’s in Austin, TX and Owl House in Rochester, NY.
I can honestly say I don’t miss bread, pasta, pizza, baked goods galore, and other normally gluten filled foods. We’ve found a way around them. I don’t know if it’ll ever get to the point where most restaurants that cater to gluten free would keep fryer oil separate and safe. Right now, however, it’s the last week of class, and I really just want a burger, crispy, crunchy diner fries, and a huge chocolate milkshake. But I know that’s not going to happen.
This has been a message from your Friendly Neighborhood Celiac.
My immune system is a huge scaredy cat. All it takes is around 20ppm of gluten and it freaks out and starts killing my small intestine. No big deal.
I had to reset my “Days Without Getting Sick” count after this weekend. I lost my combo bonus of 130 days without any signs of getting glutened. Somewhere over my Thanksgiving holiday, it found me. The rough part is, I can’t recognize the symptoms anymore. They keep changing on me. The end result is always the same but the beginning and intermediate steps are not what I thought they were. I noticed I looked a little pale and washed out on Saturday night but thought it was from a lack of sleep. I woke up with a searing headache on Sunday but thought it was just dehydration. By this morning, there was no denying the cause of my feeling like crap. So we’re back to 2 days without a gluten incident.
This has been a glutening from your Friendly Neighborhood Celiac
This is not the beginning of the story. When this story and journey began, I had no idea it would end up here.
I began showing symptoms of general gut issues in 2006, I think. That’s at least when I first remember the pain. I knew how to deal with it, so that wasn’t the beginning either. I got my first tests done in 2010 to rule out Crohn’s or anything worse. Gluten was mentioned and I had a concept of being “gluten sensitive.” I also cut out all caffeine to control spasms in my colon. Everything kept getting better after that summer, until my junior year of college. I don’t know what did it, but the switch flipped and was never going to go back to normal again. After one Tuesday in February, where I woke up feeling so sick and uncertain of what my body was going to do to the point where I almost stayed home from school, I went into the university health center and set up an appointment to talk about all my issues. I got the blood test done thinking it would say “you probably shouldn’t eat gluten at every meal.” A few days later, I was checking my email on my phone when I saw it: “Your blood tests have come back positive for Celiac’s disease.” I pretty much started sobbing in the middle of the hallway. I met my boyfriend in the food court and showed him the email while having my first “Celiac breakdown” as I call them. I had no idea what I could eat anymore. Due to other health issues, I wasn’t able to get my endoscopy scheduled to super confirm Celiac’s and make it so there wouldn’t ever be a reason to touch gluten again. I stayed in my classes while going back on gluten after being gluten-free for three weeks. It wasn’t the best thing for my grades but I was just ready to be done with this whole process. In mid-April, my mom came to visit and take me to my endoscopy and I haven’t looked back ever since.
So this part of the story begins now in October, five and a half months since the last time I (intentionally) ate gluten. There will probably be other flash backs with lessons attached, kind of like How I Met Your Mother. I’ve learned a lot in half a year, and I think teaching others about Celiac Disease and sharing my own experiences is an empowering way to navigate all the frustration, questions, delicious food and new found health that comes with the diagnosis.
This has been a message from your Friendly Neighborhood Celiac