While I’m recovering from surgery, several other health bloggers are stepping in. Please enjoy this guest post from April of Livable by Design!

Celiac disease, on the surface, may seem like a relatively simple disease. All you have to do is to avoid wheat, right? But it can be far more complicated than that. Gluten hides in many ingredients and products that you may not consider. Even if it’s not a direct ingredient, the risk of cross-contamination is always present. And the social impact of living with celiac disease can be significant as well!

For all of these reasons (and many more), those of us living with celiac disease usually develop some habits that might be considered a little strange. They are the lifelines that keep us participating safely in life. Here are just a few of the unusual things I do routinely because of my celiac disease.  

Choose Cosmetics Carefully

Gluten has a tendency to hide in just about everything, and that includes cosmetics. It’s a cheap, convenient filler, so many products contain some form of gluten. And even when the ingredients list is safe, cosmetics—just like food—may be manufactured on the same equipment as gluten-containing products. Of course, you won’t be eating your cosmetics. But think about how often throughout the day you might lick your lips or touch your face with hands that may later come into contact with your mouth. When you shower, any products on your hair and face may be washed onto your lips or even into your mouth. The risk of being “glutened” is fairly minimal (except for lip products, of course), but if you are a sensitive celiac, it’s worth choosing safe cosmetics!

Before I try any new product, I do some thorough research. I dig into the ingredients list. I read reviews from fellow celiacs and safeguard groups. Sometimes I even contact the manufacturer directly to make sure the product will be safe for me. And when I find a product I like, I’m very loyal to it! 

Of course, products do get revamped and reformulated at times, so it’s worth re-assessing from time to time to make sure everything I am using is still safe for me. 

Scout Restaurants Ahead of Time 

Restaurants are the one thing that can still make me feel panicky, even after having lived with celiac disease for almost four years. It can be terrifying to entrust myself to a chef I don’t know, servers who may not be familiar with my disease, and utensils or ingredients that may not be safe for me. So, before I eat anywhere, I do a lot of homework!

Thankfully, there are some great resources available to us celiacs to help us determine whether restaurants are safe. My go-to tool is the Find Me Gluten Free app. The app allows me to look restaurants up both by name, and to search by location or type of restaurant. If I’m in the mood for good Italian food in my own town, for example, I can search for Italian restaurants. If I’m traveling, I can search for all restaurants in a given area. Or if there’s a specific restaurant that looks enticing, I can check to see whether it will be safe. Fellow users can leave reviews and discuss specific menu items that they enjoyed. Their profile also specifies whether they are gluten intolerant, celiac, or sensitive celiac. Ratings are given for things like safety, variety of gluten free options, etc. I almost never eat at a restaurant without checking the app first!

Sometimes, though, a specific restaurant hasn’t yet been rated. Or there aren’t enough reviews for me to feel safe. I often call ahead and ask to speak with the manager or chef before visiting a restaurant. I ask questions about the prep space that will be used, ingredients and specific menu items that could be safe, and efforts that the staff will take to prevent cross-contamination. Once I arrive at the restaurant, I again review what I need the staff to do to keep me safe (such as changing gloves before preparing my food), and ask that my order be flagged with an allergy alert. I do not like feeling high-maintenance, and needing to be so detailed in my requests always feels like I am being a difficult customer. But the alternative is that I could get glutened and become extremely sick, so it’s a necessary step I just have to take. 

Ask Friends to Meet for Drinks

One thing I didn’t fully realize until I had celiac disease is just how social eating is in our culture! We incorporate eating into almost every social event: meetings, dates, family get-togethers, birthday parties, celebrations, evenings out with friends, summer barbecues, church potlucks, weddings, funerals… Eating is just a part of socializing—which can make things very difficult for those of us living with food allergies and intolerances. 

When friends ask to meet up, or when my husband and I go out on a date, we often opt to go out for drinks instead of food. It takes a lot of work to find a safe place to eat (and they are few and far between), but most places will have some safe drink options for me. I can usually order a soft drink, coffee drink, or mixed drink or adult beverage that is safe for me. We can still sit in a restaurant and enjoy being out together. We can linger over our drinks and talk. But I don’t have to stress about whether what I’m consuming will make me sick, and we have a far wider ranges of places to choose from!

Stick with Safe Places and Brands

With so much work going into finding safe products and restaurants, of course I have some favorites that I return to over and over again! 

When it came to purchasing things, pre-celiac I was very much in favor of generics and buying whatever was cheapest.  I was not brand-loyal in any way, because to me, being brand-loyal usually meant spending more money. But since my diagnosis, I’ve learned that sometimes I have to be a little brand loyal—at least to the brands or products that are safe for me. 

That doesn’t always mean needing to pay more, though. As food intolerances gain attention, more and more companies are joining the market with safe, affordable items. One of my favorite places to buy groceries is Aldi. They have a growing line of gluten free and vegan items that are budget-friendly and delicious! My other regular source for groceries is Costco. They also have more and more gluten-free, vegan, and organic items to offer, it seems, each month. Between those two stores, I’m usually able to get all of the groceries I need. 

When it comes to restaurants, there are a handful of local restaurants that I know are always safe—and I tend to stick to them. While it doesn’t afford me a lot of variety, it gives me the option to eat out from time to time without having to worry or do all kinds of research beforehand. Sometimes it’s nice to just eat out! There are also a handful of chains that are consistently reliable, such as Red Robin, Chik-fil-A, and Hawaiian Bros. When I’m traveling, it’s good to have just a few options that I know I can fall back on when I need a meal. 

Pack My Own Food

There are always occasions when I will need to eat and safe food may not be available to me. For example, when we are getting together at someone else’s house. Or when we are traveling. One of my biggest fears (and I think it’s a common fear among most of us with celiac disease) is that I’ll get stuck somewhere without safe food to eat. So, to be safe, I quite often pack my own food. 

It can feel rude sometimes to show up to a friend or family member’s house with my own food. I usually try to talk things through ahead of time, and let them know that although I greatly appreciate their wanting to provide a meal for me, it’s just less stressful for me to be able to bring my own food. I find that, unless someone has lived with celiac themselves, it can be hard to understand the nuances of safe food preparation. For example, spices in a kitchen that is not gluten free might have been contaminated while cooking other foods in the past. Plastic utensils and surfaces can harbor gluten from previous meals. Even when someone takes care to use all safe ingredients, it just takes one source of contamination to make me really sick!

I’ve become accustomed to just packing my own meals when we go places. If I know what will be on the menu, I try to prepare something similar for myself. It helps other people feel more comfortable with the idea, and it also keeps me from feeling left out. If my workplace will be celebrating a birthday with a cake, I bring my own slice of gluten free cake (I usually make a large cake, cut it into pieces, and store it in the freezer to be brought out for occasions like that). If everyone else will be eating some type of pasta, I prepare gluten free pasta for myself too. 

When we travel, I always have an arsenal of food with me. On longer trips, I pack a loaf of bread such as Schar multigrain bread (which, unlike most gluten free breads, is delicious without being toasted), some lunch meat, and chips. I almost always have a gluten free protein bar in my purse. And I often make myself trail mix or other snack mixes to keep on hand. 

Keep Separate Spaces and Utensils

I currently have a house full of teenagers, and if you’ve ever known a teenager, you can understand just how much food they consume. While there are more and more affordable gluten free options on the market, the reality is that a fully gluten free diet is expensive. I do cook a lot of gluten free meals for our family, but our kitchen is not fully celiac-safe at this stage of our lives (someday, I dream of having a fully celiac-safe house when we are empty nesters). 

Because I do have the risk of cross-contamination in our house, we are all extremely careful. I claim the top shelf of the pantry and the fridge for my gluten free foods, and those areas are always free of gluten. I keep separate items for things that tend to harbor gluten, such as plastic cutting boards, wooden spoons, storage containers, and toaster. 

Certain ingredients are always kept free of gluten, too, such as our spices, oils, and baking items like baking soda and powder. When we are making a recipe that contains gluten, those items are measured out with clean measuring spoons or cups, and added separately so that they don’t become contaminated. It’s a lot of work, and in an ideal world everything in my life would be safe. But many of us are in situations that don’t allow for that (such as raising a family, living with a roommate, or living in a rented space), so having a stash of dedicated items is essential.

Pre-Washing Shared Items

Of course, not everything I use can be dedicated gluten free. It would be ridiculous to have separate cutlery, plates, glasses, pots and pans, etc. While plastic, wood, and non-stick surfaces tend to harbor gluten, surfaces such as glass and metal do not, and they are easy to clean. 

All of our daily-use items (such as plates, cutlery, and drinkware) go through our dishwasher, and are considered clean enough for me to use. We store them in cupboards away from anything containing gluten, and I can use them without any worry of cross-contamination. 

For larger things like mixing bowls, pots, and pans, I keep a separate dish sponge and pre-wash the things I will be using. This can be a bit of an inconvenience, but it’s usually a quick task to wipe them out and rinse them off, and then dry them on my separate towel to use. If I’m making a recipe, I usually keep a clean plate or tray nearby for all of the pre-washed items I will be needing for the recipe. 

It’s a big adjustment to learn to live with celiac disease, and sometimes it can certainly mean additional work. But once you find your groove (and your go-to places and products), it becomes very livable. If you have celiac disease, what are some of the habits and solutions you’ve come up with?

April Barcalow is a nurse-turned-writer who lives with celiac disease, chronic headaches and migraines, small fiber neuropathy, chronic fatigue, and an undiagnosed autoimmune disorder. She writes about life with chronic illness, its impact on relationships, and tips and ideas to make life with illness more “livable.” She is a wife and mom to three adolescents who keep her life full to the brim. Her writing can be found at www.livablebydesign.online, and on her author webpage, www.aprilbarcalow.com.