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Celiac disease

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

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.

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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 a suitcase full of gluten-free food.

Thanks to the increase in the 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.

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