Living gluten free isn’t hard

I couldn’t just leave you with my Angry Celiac post. It’s Celiac Awareness Month after all.

I was diagnosed with celiac disease five years ago. My life has changed quite a bit since then.

Before my diagnosis, I was sick all. the. time. Like, I couldn’t make plans because I’d never know when my symptoms would strike. For nearly a year, I “lived” like this. I struggled – wondering “Is this just normal? Does everyone live like this? Am I just being weak?”

I was in denial and suffering. Eventually, I faced that fear and got my diagnosis.

photo of new grist on the balcony
March 2, 2013 | New Grist – gluten free beer | Ramallah, Palestine

After my diagnosis, at first, I was embarrassed. I didn’t want anyone to know that I was suffering from this weird disease. I worried that celiac would determine the course of my life, in particular, in keeping me from doing the things that I wanted to do. And for that reason, I wanted to keep it secret. Unfortunately, it’s next to impossible to keep a celiac diagnosis secret if you ever ingest food or drink in front of other people (because gluten is in everything. EVERYTHING.).

Fast forward five years, I’m used to certain things. I’m used to invasive questions from quasi-strangers. I’m used to eating strange combinations of things when my planned meals don’t work out for whatever reason. Pre-eating is my jam! I will always have a bag of food with me when I’m traveling. I have a food stash at work. I’m used to people acting weird around me about food. I’m used to people saying odd things like, “You’re so strong for sticking to your diet like you do,” (news flash: it’s not a “diet;” it’s a treatment plan) or making “jokes” at my expense. I’m used to grocery shopping taking forever – particularly if new ingredients or items are involved. I’m used to having dreams where I eat forbidden foods and waking up in a cold sweat, worrying about that happening IRL. I’m used to flashes of unbridled lust when a Pizza Hut commercial comes on. I’m used to “special menus.” I’m used to planning ahead. I’m used to a certain lack of spontaneity.

After I first got diagnosed, I broke down at work when talking to a friend about it. I told her that I wanted to travel to all these places in the world, and now I’d never be able to because of my disease — what would I eat? My nutritionist at the time (whom I no longer see for more reasons than just because I moved away) further cemented that doubt in my mind. She told me I could still travel, but only to countries that were “easy,” such as the UK, France, or Canada. “Great,” I thought, “but what about the places I actually want to go, like India, Turkey, or Easter Island?” She made me feel like those places, those dreams, were now off-limits or out of reach to me.

Luckily, she – the nutritionist – was an idiot. Since being diagnosed, I’ve traveled more than I’ve ever traveled, to places that weren’t on my nutritionist’s approved-for-travel list (and two of the three from my list above). I moved to Palestine and did just fine. Yeah, it was challenging, but I did it.

Veggie pakoras in Tikka Masala sauce with brown rice and garlic/cilantro pita
5/20/2012 | Homemade gluten free Indian food | Ramallah, Palestine

All of this is to say: people make celiac seem like the end of the world (sometimes even the people who are supposed to be helping you navigate this strange new world); that living and eating gluten free is “a hard choice,” or a fate they wouldn’t wish on their worst enemy. And while you do have to say goodbye to some things and learn to live with other things, it isn’t actually a choice at all. Aside from being medically required, it was one of the easiest “choices” I’ve ever had to make. It’s a no-brainer. I don’t have expensive medications to buy for the rest of my life. (Although I do have to buy expensive food.) I don’t have to undergo costly or dangerous surgery to treat my disease. Living gluten free means that I can live a somewhat-normal life. By adjusting my lifestyle and the food that I eat, I can stop being sick and tired all the time. And that is a beautiful thing.

Living gluten free is different, but it’s not necessarily hard.

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12 thoughts on “Living gluten free isn’t hard”

  1. I agree! I’ve only been doing it for 8 months, but it’s really fine. Great, even! I had someone say to me “I couldn’t live like that.” It’s just so strange. People are bizarrely emotionally obsessed with being able to eat whatever they want. I do miss being able to eat out easily or order pizza, but it’s certainly not the end of the world.

    1. Why is pizza so delicious? I still haven’t found a perfect replacement for it – my current favorite is Against the Grain frozen pizza, but it’s not the same as a fresh deep-dish pie from Pizza Hut.

  2. It’s so cool to see that you have been able to travel! That has been the one thing that I’ve worried about since I was diagnosed 6 months ago. I’m so glad to hear that it is possible! 🙂

    1. Not being able to travel was one of my biggest worries post-diagnosis, but don’t worry – you can totally do this! It just takes a lot more planning. And, for me anyway, checking a bag that is half food. 🙂

  3. Hi Emily,
    I’m Koei from Japanese production company.
    I commented on your blog entry “Wasting Time in Wadi Rum” few days ago regarding permission to use your picture of Wadi Rum.
    Please contact me via email and I’d like to explain about our project.
    Thank you,

    Koei Taga

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