My Personal Experience with Celiac Disease
This post is going to be a lot different from my other posts. It’s going to be somewhat informal and it’s going to be a very personal and very real post. I have been living with celiac disease for 7 years now and it has been an eventful journey to the say the least. My personal experience with celiac disease is both negative and positive. Having an auto-immune disease sucks. So does following a diet that most people think is just a “fad diet” (learn why it’s not a fad diet here). Don’t get me wrong, I have grown a love for being gluten-free. What I don’t love is people not taking my dietary choices seriously. Learn about the lessons I learned, the diet philosophies I adopted, the symptoms I endure, the frustrations I have, and why I ultimately don’t hate having celiac disease.
My Dietary Approach
I have one question that ultimately guides my diet and that is “is this gluten-free”. I mean duh, right? However, my personal experience with celiac disease has influenced me to employ a few other dietary tactics to help improve the way I feel and prevent an occurrence of being “glutened”.
1. I ALWAYS read the allergy warning and ingredient list of every processed food I eat (though I admit sometimes I get lazy with foods I trust and then end up missing important label changes).
2. I have accepted that pretty much most gluten-free alternatives are not going to be affordable.
3. Because I’ve accepted the lack of affordability, I don’t really eat gluten-free alternative foods. You won’t find gluten-free bread, pasta, cookies, bagels, etc. in my cabinets. If you do, either I found a really awesome deal at my local grocer, or I have special plans.
4. Because I don’t often eat gluten-free alternatives, my thoughts revolving around my diet don’t typically include those foods. I don’t dwell on the foods that I can’t eat and I don’t dwell on their alternatives. Instead, I focus on the foods that are delicious and naturally gluten-free. So when I think about dinner, I don’t think about how I can make lasagna gluten-free, instead, I think about how I can make a delicious curry or buddha bowl.
Basically, I don’t eat sandwiches, pizza, chicken nuggets, cereal, donuts, pastries, muffins etc. (except on VERY rare occasions). I didn’t switch to a gluten-free diet and just start buying everything I used to eat but gluten-free. However, that’s not to say I don’t enjoy a few packaged gluten-free goodies here and there!
I am a huge advocate for individualized nutrition care. Thus, it’s important to keep in mind that while these tactics work for me, that doesn’t mean they will work for you!
When I eat gluten I am sick for days. I’ll spare you the details but symptoms can get ugly and they have progressed quite a lot since being diagnosed.
I am so sensitive to gluten that breathing it in fogs my mind and can ultimately make me sick. I used to work at a bakery and I had to promptly quit my job 3 months in because I started getting sick on my shifts.
My skin reacts to gluten. While this is a topical reaction and not a digestive related reaction (thus possibly attributed to an intolerance to gluten topically not attributed to my celiac disease), It is very real. I need people to wash their hands before touching me after they handle gluten or else I break out in a terrible and itchy rash. I have horror stories from trying out new eyeliners and having sore puffy eyes for days.
My Fears and Frustrations
Every situation where food is involved outside of my home and control is scary for me. Going out to eat and attending events where food is involved is stressful. These situations involve me constantly watching for cross-contamination. I look for people touching bread and then touching other platters of food and I watch for people using the same utensil they served their pasta with to serve the roasted vegetables with. I look for people dipping bread into shared containers of hummus, and for plates of bread being to close to the platters of fruit. It requires me to always ask myself “could crumbs have easily fallen on to this?”. It is exhausting and having people who understand and can help advocate is so helpful and overwhelmingly appreciated.
Going gluten-free definitely is a tiring and sometimes a lonely lifestyle. However, it’s made me realize and achieve a few key things.
1. I wouldn’t be eating nearly as healthy as I am now if it weren’t for going gluten-free. It was a much-needed push to change my lifestyle for the better.
2. I will never forget I showed up to a sugar-free alternative food sampling lab for a class one day and I was filled with an immense amount of dread because I knew I wasn’t going to be able to try anything. However, I was filled with delight and gratitude when I found out that my professor had taken my celiac disease into account. They let me make my own gluten-free muffins with a sugar-free alternative on the other side of the kitchen. It’s little things like that, where people remember my condition and make an effort to include me that makes me realize who cares, and who is a little less invested.
3. Celiac disease is ultimately what sparked my passion for nutrition and dietetics. It is what lead me to the realization of what I wanted to do with my life and for that, I will be forever grateful.