9 Ways You Can See My Invisible Illness, Celiac Disease

As I've shared before, one of the hardest parts of living with an invisible illness is that you look "normal" - but your body isn't. Last month, I wrote about how people can "see" my invisible illness of fibromyalgia. However, I also have celiac disease...and, people may not realize that there are way more visible "signs" of celiac disease than a gluten free diet. 

9 Ways You Can See My Invisible Illness, Celiac Disease

So, today, I'm sharing the visible quirks and eccentricities that reflect my chronic illness of celiac disease - from my dates' improved dental hygiene to my gluten free swag!

1. My obsession with food labels.

I'm that girl: the girl who takes seven minutes to choose a new brand of cereal to add to her grocery cart. Sure, my dedication to finding the perfect gluten free product to try is partly because I'm a foodie. However, when you have celiac disease, you also need to pay way more attention to food labels than the average American. 

Why? Well, obviously we need to make sure a product is gluten free. However, people with celiac disease also need a cross-contamination-free diet. This means sometimes we need to get out our magnifying glass (joke) or even our phones to do a quick Google search (not a joke) to make sure a "gluten free" product really is just that. (Cough cough, the gluten free Cheerios controversy...)

2. My "clean before you kiss" rule.

It's awkward. It's embarrassing. But it's also a fact: I can get glutened from being kissed by someone who recently ate gluten. When I was with my first boyfriend, I sometimes let my strict "no kissing before brushing" rule slip...but when I started feeling like a zombie, I knew that cross contamination was killing the mood (and me). 

9 Ways You Can See My Invisible Illness, Celiac Disease
Picking a gluten free dinner solves that problem too!
Now, I try to joke, "Fun fact: I can get glutened by a kiss, so all my dates need to brush their teeth first!" early on into a first date. I used to be self-conscious and worried that guys would think my request was too "high maintenance" to deal with. Two relationships later, though, and I know that people who really care don't mind clicking "pause" on romance to brush their teeth. As I always tell my dates: "Your dentist will thank me!" 

And, let's be honest. Only being able to kiss with minty fresh breath isn't a bad deal! 

3. The restaurant dinners where I just watch my friends eat. 

A few weeks ago, one of the other girls in my MFA program had a birthday, and she invited everyone out to dinner at a local bar at the last minute. Honestly, I didn't really feel like going to a restaurant with zero gluten free options and watching people eat. However, I drove myself across town anyway, knowing that a social break from lesson planning would do me good. And you know what? I had a blast.


I talked and joked and goofed around with some new friends as they devoured freshly baked bread dipped in balsamic and olive oil, pasta alfredo and burgers. Most likely, the other customers - if not the waitstaff - wondered why I didn't order any food of my own. But, as one hour and then two hours passed, I didn't mind being the odd one out. 

9 Ways You Can See My Invisible Illness, Celiac Disease
Friends > food
So, the next time you see someone just watching others eat, maybe there's more to the story than a picky or disordered eater. Maybe they're a celiac or food allergy warrior feeding on socialization instead of food.

4. My insecurity with showing my stomach.

I’ve never been a fan of crop tops, but my self consciousness about my stomach has definitely increased since my celiac diagnosis. Suddenly, I had random bouts of bloating, constipation and other not-so-attractive tummy troubles. In the four years since celiac entered my life, I’ve definitely improved my gut health and overall body image. When boyfriends have asked why I rarely show my stomach, though, celiac is usually my first answer.

5. All the snacks in my bag!

BeyoncĂ© may have hot sauce in her bag, but this celiac always has way more snacks than that. One of the biggest challenges of living with celiac disease is not being able to grab a bite no matter where you are - especially if you're living in a small town with limited gluten free options like mine. 

9 Ways You Can See My Invisible Illness, Celiac Disease
One of my favorites!
So, whether I'm leaving the house for an adventurous day trip or an hour of errands, I typically have at least one bar (usually one of my favorite Health Warrior bars) in my purse. Let's just say that if you're ever in dire need of a snack, having a celiac best friend can come in handy

6. The questions I ask every chef or friend bringing me a meal.

What people often don’t understand is that celiac disease is much more complicated than just eating gluten free. As I’ve shared before, if you cut up one piece of bread into 7,300 pieces, just one of those tiny pieces can sicken and cause dangerous intestinal damage in celiacs like me. So, as much as I appreciate it when friends bring me a gluten free treat, I can’t enjoy it without asking about how they cooked it or what exact ingredients were used.

When I’m eating out, I need to ask the chef the same questions - even if the restaurant has a "gluten free" menu. Some restaurants are awesome in that their gluten free options really are gluten and cross contamination free. But I've been told that “gluten free” fries were made in the same fryer as breaded chicken or that the “gluten free” pasta was cooked in the same water as regular pasta too often to assume that gluten free means celiac safe.

9 Ways You Can See My Invisible Illness, Celiac Disease

To the customers or waiters who don't know me and my medical history, I may seem high-maintenance or picky. Really, though, I'm just doing whatever I need to do to eat safely with celiac disease.

7. My freezer, filled to the brim.

We all have those days where we just need some quick, easy comfort food. When you have celiac disease, food allergies or other dietary limitations, though, you can’t just pull into any restaurant or grab a random freezer dinner from your local grocery store.

So, when I do have time to cook or blend up some delish smoothies, I make enough for a family of four and store leftovers in my freezer for emergencies. Add in some of my favorite gluten free breads, tortillas, pre-cooked grains like rice and quinoa and frozen fruits and veggies, and the freezer is my secret weapon to eating gluten free and healthy during super busy days! 

8. The days I feel and look like a zombie.

Even four years after my celiac disease diagnosis, I still make mistakes. For instance, last year, I realized that a probiotic I had been using had changed its formula and now contains traces of wheat. (Luckily, there are plenty of gluten free probiotic options, this this one). 

9 Ways You Can See My Invisible Illness, Celiac Disease

And even when people do everything right, celiac complications can sneak up on them. What do I mean? Well, I can tolerate small amounts of gluten free oats, but if I eat an entire (gluten free) oat-based protein bar or a few handfuls of gluten free oat-based granola, my body goes into zombie mode (complete with brain fog and 24/7 fatigue). Meanwhile, sometimes my stomach will decide to freak out for no reason at all.

What does all of this mean? If the celiac in your life looks a little worse for wear, sure, they could have a cold...but it might be their invisible illness acting up, too. 

9. My gluten free swag.

As challenging as living with an invisible illness like celiac disease can be, invisible illnesses can have a few benefits. Which is (arguably) the biggest? You can choose when (or if!) you reveal your chronic disease to the world. 

Personally, I wear my celiac diaease diagnosis on my sleeve...sometimes literally. I have several shirts related to celiac disease or gluten free food. My backpack is decked out with gluten free buttons. Even my computer rocks stickers about my favorite gluten free brands. 

9 Ways You Can See My Invisible Illness, Celiac Disease

Why do I do this? First of all, it can make the “celiac conversation” with new people a little less awkward. Instead of my gluten free diet sounding like a secret being suddenly revealed, people usually nod and say something like, “I guessed as much by your backpack.” or “I read that in the blog post linked to your Facebook page.” 

Even more importantly, I rock gluten free swag to show that celiac disease is a part of who I am...and that’s it. It’s not my total identity. It’s not the end of the world or a culinary death sentence. And it’s not going to stop me from chasing my dreams and enjoying a lot of the “normal” activities every other 20-something enjoys. 

What Everyone Should Know About Celiac Disease

Much like fibromyalgia, celiac disease and its symptoms are often invisible to the naked eye. In fact, in light of the recent gluten free fad, you can't even consider a request for a gluten free menu or a gluten free option at a work function automatic indications of celiac disease or gluten intolerance. 

9 Ways You Can See My Invisible Illness, Celiac Disease

However, there are several ways you can “see” your loved one or friend’s celiac disease diagnosis...and the more you can recognize the small and large ways that celiac disease impacts their lives, the more you can empathize with their struggles and offer support when they need it.

Celiac disease may be an invisible illness - but it doesn’t have to be an invisible or overlooked issue in the general public. And every time you help spread celiac awareness or support someone with celiac disease, you are part of the movement to make celiac disease just as visible as it is life-changing. 



No questions today - just tell me your thoughts in the comments below! 

Comments

  1. Great post. It will likely increase people's understanding. There is a restaurant by me that I love to bring my nephew to (he also has celiac). IT is 100% gluten free. Absolutely no gluten touched ingredients are served. It makes it so much easier.

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    Replies
    1. 100% gf restaurants are truly blessings!

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    2. Great Post Casey. Ive had Celiac for 20 years and this is one of the most honest and refreshing perspectives. thank you.

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