What My Good and Bad Days Look Like With Celiac Disease

Like most living with chronic illnesses, living with celiac disease has its ups and downs. So today, I wanted to really share what my good days and bad days with celiac disease look like.

If you have celiac disease - and especially if you’ve recently been given a celiac diagnosis - I hope this post makes you feel less alone in the emotional rollercoaster celiac disease may sometimes trigger. And if you don’t have celiac disease, I hope this post lets you know what life with celiac disease can actually be like.

So without any more throat clearing...let’s get started.

My Good Days with Celiac Disease...

On good days, living with celiac disease seems relatively easy - especially since a good amount of time has passed since my celiac diagnosis.

On good days, I wake up after a restful night’s sleep and - TMI warning - my digestion is on point, if you know what I mean.

On good days, I have access to plenty of delicious gluten free foods. People often assume that going gluten free means you don’t eat bread or carbs or junk food...but on a good day, my fridge and pantry is full of goodies like gluten free hot pockets, gluten free and vegan bagels, and yummy alternatives to all my old favorite foods. 

On the best days, I’ll even enjoy eating out gluten free at a celiac-safe restaurant. And if that restaurant happens to be 100% gluten free...well, let's just say heaven does exist on Earth.

On my good days with celiac disease, I am energized and nourished. I’m grateful to not have constant acid reflux or fatigue, like I did before my celiac disease diagnosis. And I’m grateful that there are many more gluten free options available nowadays for people with celiac disease like me, and that I have the power to control my disease using diet.

But there are bad days with celiac disease, too.

My Bad Days With Celiac Disease...

Early after my celiac diagnosis, bad days involved still being in pain while eating gluten free...still losing weight...being put on a liquid diet by my doctor...being hospitalized...and being fed through a feeding tube.

Seven years later, I’m now medically in “remission” from celiac disease (thanks to being gluten free and my body finally responding to the diet). And just as my body has changed, my definition of “bad days” has changed too.

Now, bad days look like hours of tossing and turning in bed because something I ate - even though it was gluten free - made my stomach implode like a balloon.

Or dreading going out to eat because I don’t want to make a big deal out of my dietary restrictions during a lunch with my boss or my significant other’s family, but I also don’t want to get sick. So I order a salad and give my usual “celiac spiel” to the waiter (something like “I have celiac disease and need to eat a strict gluten free diet. That means my food needs to not contain any gluten or wheat but also be prepared in a separate space and not come in contact with gluten...”) and hope for the best, but feel too nervous to enjoy the food.

Or bad days can be when I'm glutened and turn into a sleep-deprived zombie...or when I'm not glutened but I'm I crying because I just want a damn slice of Papa John’s pizza and the freedom to eat out wherever I want. Because even after you're a pro at eating gluten free, there are still moments when you make a mistake or when you crave the ability to be like everyone else. 

Which leads me to one of the last triggers of a bad day...and one of the reasons why I’m writing this post:

People sometimes assume I’m gluten free because it’s trendy or I want to lose weight. I've even been accused of exaggerating the seriousness of celiac disease so I could get attention, or for letting celiac disease "be my whole my life." And call me sensitive, but all of those comments hurt.

Because, yes, on my good days, my day can look like anyone else’s, except for what foods end up on my plate. But I don’t eat gluten free to be cool. I eat gluten free to survive. 

And the more people who understand that, the more good days we ALL can have.

What I Hope This Post Can Teach Anyone About Celiac Disease

No one’s life is perfect, and when you add a chronic illness (or several of them!) into the mix, that is even more true.

But I have found that most bad days can get better...with a few helpful factors, like:

• Supportive friends and family
• Self-compassion and patience
• Access to educational resources (check out this post for 31 FREE resources for celiac disease)
• Connecting - online or in-person - with other people who can understand

So the next time you or a loved one with celiac disease is having a bad day, I hope this post helps you feel less alone and even gives you direction on what to do next. Even if that’s just being patient and believing that another good day will come soon. <3 

What are good days and bad days with celiac disease or another condition like for you?