11 Things People With Celiac Disease Do That Seem ‘High Maintenance,’ but Actually Aren’t


7. Turning down some social invitations.

One of the “celiac symptoms” I wish my doctor had warned me about after my diagnosis is the isolation that can result from dietary restrictions. Like it or not, many social activities, especially in college or work, involve food.

When you can’t eat the free pizza or your co-worker’s birthday cake like everyone else, social events can feel a little awkward and even less enjoyable at times. As a result, you may find yourself turning down social invitations where you know there will be tons of food and little people or activities you actually enjoy spending time with or on.

I certainly don’t recommend avoiding every single social event that involves gluten. I’ve gone to countless parties where I can’t eat a thing. By eating ahead of time, bringing my own food or just enjoying the company instead of the food, I’ve still had a blast. However, you also shouldn’t feel guilty for saying “no” every once in awhile, whether it’s because of celiac disease complications or other reasons.

8. Spending extra money on particular brands of beauty or hygiene products.

Some celiacs are fine using any hygiene products they find in their closet. Others, like me, prefer using only gluten-free products, especially if they run the risk of being accidentally ingested (as with lipstick and face wash). If you fall in the latter group, you might find yourself spending more money than you used to on beauty and hygiene products. That’s often just the reality of using high-quality, allergy-friendly makeup or cleansers.

Like with food, there are ways you can save money on gluten-free beauty products. Although I used to use Cleure (and still love their products), I eventually found gluten-free shampoo and conditioner for a fraction of the cost on Amazon. If you do splurge on gluten-free hygiene products though, know that doesn’t automatically make you “high maintenance” or “picky.” You’re doing what you feel you need to do in order to live safely with celiac disease. And as long as you have room in your budget for these extra costs, that peace of mind is definitely priceless.

9. Getting upset over little things, like not being able to eat the cake at your work’s office party.

It happens. You might go weeks, months or even years eating gluten-free with no problem. And then you’re having a bad day, you walk by your old favorite bagel place or you just wake up craving a “real” slice of pizza. And it hurts.

When those kind of moments happen, I encourage you to embrace those emotions and let yourself cry if you need to. You might feel “silly” for crying over a sandwich or pasta salad, but you’re crying about much more than just food. Most likely, you’re really upset about losing the freedom to eat whatever you want, not to mention the less complicated lifestyle you probably once had.

Times like these are when having a solid support system who understands (or at least tries to) can make a huge difference. I always feel fortunate that my mom went gluten-free with me. Although she doesn’t have celiac disease, my mom’s gluten intolerance means she can understand the social isolation, cravings and sad days that can come from dietary restrictions, as well as the joy I feel when I find a new gluten-free food or recipe I love!

10. Often preferring to eat from your “safe list” of foods or restaurants instead of trying somewhere new.

It’s true that there appear to be more gluten-free options than ever, whether you’re walking around the grocery store or looking for a nearby restaurant to dine at. However, “gluten-free” unfortunately does not mean “celiac safe,” and many restaurants’ gluten-free options are cross- contaminated and therefore not appropriate for people with celiac disease.

As a result, eating out gluten-free can honestly feel a little scary. Even though we don’t go into anaphylactic shock like someone with food allergies, eating gluten can majorly hurt people with celiac disease. Personally, I experience stomach issues, extreme fatigue, insomnia, brain fog and several other symptoms for at least a week after being glutened.

So once I do find a restaurant that can do gluten-free right, I often like to stick to that restaurant instead of trying new places — and I’ve heard from many other celiacs they feel the same way. This doesn’t make us “boring” eaters or mean we’ll never ever try new places. It’s just a natural reaction to finding a safe gluten-free haven in a world full of gluten.

11. Asking for help with simple things when you’re glutened.

The last “high maintenance” trait I’m talking about today refers to the time during which people with celiac are probably the most “demanding”: When we’ve been glutened.

Like I explained in the point above, accidentally ingesting gluten can cause major problems in people with celiac disease. Some celiacs even have to go to the hospital to receive fluids or other care after they’ve been glutened.

So when a dietary mistake does happen, we’ll probably need even more help than usual, whether it’s with small things like warming up some gluten-free soup or bigger chores like doing the laundry or grocery shopping. It can be easy to feel “lazy” or “stupid” when you’re glutened and your brain and body isn’t functioning properly. However, feeling guilty about asking for help won’t make you heal any faster — and I can say from personal experience that many family members and friends will do anything they can to help you feel better.

Once you do recover from being glutened, nothing says “thank you” more sweetly than baking some GF goodies for the friends and family who gave you a helping hand!

The Bottom Line

Even though it’s been five years since I received my celiac disease diagnosis, I still sometimes find myself apologizing for the quirks celiac disease gives me. I apologize to travel companions for always packing a ton of food; I apologize to friends for limiting our restaurant choices; and sometimes, I even find myself apologizing to waiters for my “complex” order.

But I’m challenging myself to stop apologizing for traits or factors that are out of my control. If you find yourself saying “I’m sorry” too often for celiac traits, I hope you join me on this challenge as well. After all, we did not choose to have celiac disease and we did not choose to need to eat a gluten-free diet. Not to mention, celiac disease has actually given me several hidden blessings and I’m guessing most celiacs can say the same thing.

So let’s change the mindset around celiac disease (and other chronic illnesses) from “high maintenance” to “worth the work.” Because it’s worth the work of being gluten-free when it lets us thrive with celiac disease. And we’re worth the work others might have to do to have us in their lives.

11 Things People With Celiac Disease Do That Seem ‘High Maintenance,’ but Actually Aren’t

Leave a Reply

Your email address will not be published. Required fields are marked *

Scroll to top