After you’ve recovered from the initial shock of a celiac disease diagnosis and started adapting to living gluten-free, you’ll probably begin noticing just how much your chronic illness shapes your everyday life. You might even find yourself feeling guilty for being so “high maintenance” because of the new precautions you have to take for celiac disease.
I want to kick that guilt to the curb. As soon as I read this post about seemingly “high maintenance” things people with chronic illnesses do, I knew I had to write a post from the perspective of someone with celiac disease. So whether you have celiac disease and want to stop feeling self-conscious or guilty for the gluten-free lifestyle you must follow, or you are a celiac’s loved one and want to better understand what it takes to live with the disease, keep reading to discover 11 things people with celiac disease do that seem high maintenance but really aren’t.
1. Traveling with enough gluten-free food to feed a small army.
There’s a running joke in my friend group and with my family that I’m not high maintenance, except when it comes to food. Whenever I’m traveling, I don’t need to bring a lot of clothes or personal hygiene products, but I almost always have at least one bag or suitcase full of gluten-free food.
Thanks to the increase in popularity of gluten-free foods in recent years, it is easier to find celiac-safe food in more places. However, gluten-free products can vary greatly in prices between one place or another, and different locations of the same grocery store chain might not sell the same gluten free-products.
I typically follow the “better safe than sorry” mantra and often pack more food than I actually need. I imagine many celiacs (especially newly diagnosed celiacs still figuring out where they can safely shop for gluten-free food) adopt a similar strategy. So if our suitcases do feel heavier than the average bag, friends and family can rest assured there is some solid logic behind our food stash!
2. Insisting that shared kitchen countertops be wiped down multiple times a day.
In my experience, the most challenging part of going gluten-free for celiac disease is avoiding cross-contamination. People with celiac disease can get sick from a crumb of wheat or someone using the same plate or utensils to make a gluten-filled and gluten-free meal. As a result, if someone with celiac disease is using a kitchen that also contains gluten, cleanliness is a super important ground rule to set.
Personally, I live alone in my own studio apartment during the school year, but when I’m at home for the summer, my parents’ kitchen does have gluten. I feel bad at times that my family has to change their routine and be extra vigilant every time they pour gluten-filled cereal or make a sandwich on regular bread. However, I try to remind myself that it isn’t my choice to need a gluten-free environment — it’s a medical requirement. And if you have celiac disease or another medical reason to need a gluten-free diet, the same can be said about you.
3. Spending 5 to 10 extra minutes talking to a restaurant server or chef every time you eat out.
I love eating out and there are many safe gluten-free restaurants to choose from nowadays. However, when you have celiac disease, talking to your waitress or asking to speak to the chef is a regular requirement.
Even if I’ve eaten at a restaurant safely several times before, I always explain to my waiter that I have celiac disease and need a gluten-free meal free of cross-contamination. Sometimes, I even ask to speak to the chef or restaurant manager if the waiter doesn’t seem to understand what a “gluten-free diet” really is.
Some celiacs even use special restaurant cards that explain the basics of celiac disease and the gluten-free diet. These can be especially helpful if you’re traveling abroad. No matter how you explain your dietary limitations, however, it can take time — and this process feels 1,000 times less stressful when your dining companions understand how important this conversation is to your own health and personal safety.
4. Insisting there are separate condiment jars, toasters, etc.
When you first learn you have celiac disease, you might not expect to have to buy your own toaster or keep your own gluten-free labeled peanut butter jar or butter container. However, cross-contamination can cause serious health issues in people with celiac disease, which means precautions like these are often necessary when you’re sharing a kitchen with gluten-eaters.
How far you take the “separate gluten-free” theme in your kitchen depends on your own comfort level and your family’s understanding of cross- contamination. For example, some celiacs also have their own separate pots, pans and utensils. Personally, I share most cooking equipment with the rest of my family but it’s always cleaned thoroughly and doesn’t have any scratches where gluten could hide.
Eating a gluten-free diet while living with people who eat gluten can be challenging and requires a lot of open communication and compromises. However, your health should come first and your loved ones or roommates should hopefully understand that.
5. Turning down offered food, even when someone claims it is “gluten-free.”
Just picture this: You’re at a neighborhood BBQ armed with your own safe gluten-free food. Then, a kind neighbor surprises you: She made gluten free brownies with you in mind! However, the more you talk to her, the more you realize she doesn’t understand how sensitive celiacs are to cross- contamination. What do you do?
As awkward as it feels, I often end up politely turning down the food in these kinds of situations. When I can’t be sure that the baking mix, spices, cooking utensils, etc. used in a “gluten-free” dish are actually celiac safe, being polite isn’t worth getting “glutened” and feeling sick for at least a week.
I’m sure this is frustrating to some people and they may think I’m overly paranoid or a picky eater. But I shouldn’t have to apologize for looking out for my health and you shouldn’t either.
6. Extensively researching any new restaurants or places you’re visiting.
After I learned I have celiac disease, going out to eat became a lot more complicated. No longer could I just wander around town and eat at whatever restaurant sounded good. Now, I often relied on research done before I even left the house.
It can definitely feel frustrating to lose some of the spontaneity and flexibility you used to enjoy. Friends and family might also struggle with you not being able to “go with the flow” like you used to. However, if you explain that researching gluten-free options ahead of time makes your trip a lot less stressful and more enjoyable in the long run, I’m sure most companions will appreciate your extra work.
Plus, you can try to make a list of several options for gluten-free food. That way, you can still have some in the moment freedom with choosing. Beyond handy-dandy Google, the Find Me Gluten Free app (and website) is my favorite research tool.
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.
Do you ever find yourself apologizing or feeling “high maintenance” for celiac-related obligations? Or how do you view your chronic disease with a positive mindset? I’d love to hear your ideas in the comments!
An original version of this story first appeared at Casey the College Celiac.