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Living with Celiac Disease

I have Celiac Disease. It was diagnosed back in late 2015, but I I wonder if I have had it longer. 2015 was ROUGH though, so I doubt it. There’s A LOT of good info I would love to share with you about Celiac Disease. Like how it’s diagnosed, what to look for, and what it actually IS. But this article is strictly about living with it, so I’ll keep all the other jazz to a minimum.

Real quick though, Celiac Disease is an autoimmune condition. Much like my Type 1 Diabetes, my immune system gets drunk in the presence of Gluten and attacks my intestines. Celiac Disease is the ONLY autoimmune disease where the trigger is known, so living with it is straightforward: Avoid Gluten like the plague! It sounds really simple, but it’s actually pretty hard. Which sucks, but with a bit of grit and a lot of humor is totally doable.

My blood test results checking for Celiac

Mindset and Celiac Disease

Why I have to talk about it. Even though I don’t want to.

This is a huge one. Your mindset with ALL chronic conditions really matters, but I find with Celiac Disease it matters a little extra. It’s such a public disease! I mention in my article about T1D that I don’t talk about it much. I do not have that luxury with Celiac Disease. Think of it like this:  T1D is like the crazy klepto cousin that steels shit every time you look away. So you quietly have to watch her CONSTANTLY. But she’s silent and only steals YOUR shit.  Celiac Disease is your obnoxious uncle who all the neighbors can hear and he gets belligerent when he starts drinking. So you only need to watch him when there’s alcohol (gluten)  around. And you have to tell everyone that you can’t allow alcohol in your home. And have to ask if there’s alcohol in whatever they bring over. Or if they drank some before they kiss your uncle because he’s a  huge lightweight and can’t even touch it.

Bring on the bad jokes!

Because I constantly have to ask servers for Gluten Free menus, or talk to the cook, or turn down a delicious looking steak made JUST FOR ME but it has soy sauce in the marinade… I find humor to be my go-to response. If I got butt-hurt or angry every time I wound up at a restaurant that I can only eat water at I’d be a miserable person with no friends. Instead, I usually travel with snacks, eat before I go, research ahead of time, and bring that bad jokes. When someone rolls their eyes because I can’t ‘just pick the croutons off’ I tend to respond with ‘It’s ok. I’m better than you. I’m Gluten Free!’ Which oddly breaks the ice quite nicely. They see that I am not a total snob about it, and I acknowledge their annoyance. This is usually followed up with a quick explanation of Celiac Disease vs. a lifestyle choice.

I have also been known to ask people if I can watch them eat their food when they play the guilt card. I’m not REALLY serious, but the weird ass faces I make when they take a bite usually helps them understand that they do not need to feel guilty. People shouldn’t feel guilty when I can’t eat something or they accidentally made something with gluten in it.

Humor. Use it. Put your own personal spin on it and bring the bad jokes. It helps everyone feel better! and remember, you can eat when you get home. You will not die if you’re hungry for a little while.

The mechanics of living Gluten Free

When I was first diagnosed I was convinced I had to buy all new kitchen stuff and live in a bubble. The articles out there are TERRIFYING. Truth is, I did have to replace some of the plastic stuff in the kitchen, but that was it. I also didn’t make the family go gluten-free, so I have two of some things (like spatulas). The hardest transition to make was not letting people share my food, pick off my plate, or touch anything that might go in my mouth. It sucks when my kid wants to give me a kiss goodbye, but he just ate a bunch of crackers. (And yes, that will make me sick.) I also was wondering why I was so sick randomly but then saw on the side of the playdough ‘Contains Wheat’. My kids had that ALL OVER the table and counter. So now we can’t have commercial playdough in the house. Lame.

In a nutshell, living Gluten Free can be really hard, because it’s everywhere. The Gluten Free fad has been super helpful in bringing new products around, but I still have to be careful. One of the additives used in GF products makes me sick. Oats can make me sick, as well as every grain flour that’s not rice. Gluten is the BIG culprit in Celiac Disease, but unfortunately, other foods can mimic it. It’s a learning process. I cook most of my own meals, or we stick to the same restaurants that have proven to be safe.

So is it really that bad?

When I get glutened? Hell yes, it’s bad! The roof of my mouth swells and chafes, my stomach feels like I swallowed broken glass, I get a nasty headache, my joints get stiff and achy, I’m exhausted, and then I get horrible, sometimes bloody, diarrhea. Feeling like this can last for days at a time. IT SUCKS. So I do everything I can to avoid Gluten. Obviously. Thankfully my discovery of Juice Plus has really helped me heal, so my recovery time from Gluten has grown shorter.

I can’t touch my sons’ food and then touch mine without washing my hands first. I was my hands A LOT. All dinners I cook are Gluten Free and I annoy people a lot when I can’t ‘just take the bread off’ of something when I eat in public. It’s like a peanut allergy, but with what essentially feels like bad flu instead of anaphylaxis. And increased cancer risk.

Celiac Disease is lame, but I am thankful that I know the trigger. Unlike Chrone’s Disease, I know exactly what to avoid right off the bat. Other things may play a role too, but nothing like Gluten does. So I am thankful for that. And I am thankful for the Gluten-Free lifestyle by choice folks. Without them, we Celiacs might not have prepackaged pretzels!