Living with Celiac Disease

It’s interesting, I have a laundry list of chronic illnesses that affect my daily life–sometimes in pretty severe ways. But if you asked me which disease I’d get rid of if I could, my answer might surprise you. Although it’s my least serious issue in some ways, the thing that affects my life every single day, and that impacts my social life every single day, is my celiac disease. And, to be honest, because of its daily impact, it’s the disease that often takes the greatest emotional toll on me.

That’s probably a surprising admission to many people. After all, what’s the big deal about having to give up some bread? Unless you’re a carb-craving food lover, skipping bread and pasta probably doesn’t seem like a major loss. But celiac disease is so much more than simple ingredient lists!

The biggest issue with celiac disease is actually cross-contamination. It’s not enough to find something labeled “gluten free,” or made with gluten free ingredients. For those of us with celiac disease (similar to those with severe nut allergies, or other food allergies), it can be equally dangerous to eat food that’s come into contact with gluten. That includes cutting boards and cooking utensils that have been used with gluten foods. It includes spices and baking ingredients that might have come into contact with gluten-covered measuring spoons. It includes sauces, thickeners, preservatives, coloring, and a long–LONG– list of other sources of potential contamination.

To stay safe, for example, I pre-wash all of the pots and pans I use in my home. I have separate utensils and containers for things that are likely to harbor gluten (like plastic and wooden spoons, cutting boards, toasters, etc.). My food is stored on the top shelf of the pantry and fridge, away from all of the other foods. Our spices and baking ingredients are used extremely carefully to prevent cross-contamination, or we keep separate ingredients altogether. I have separate kitchen sponges and dish towels. I only use plates and silverware that have been cleaned in the dishwasher or have been washed separately with my dish sponge.

Are you beginning to feel the weight of celiac disease?

I can’t always eat at home, though. When we are traveling or looking to go out for the night to a restaurant, I do a deep dive into the place where we’re planning to eat. I research its safety for celiac disease and read extensively the reviews other celiacs have left. I often call ahead to speak to the chef personally, to ask about the cooking environment and process for preparing food. When I place my order, I explain celiac disease carefully to the server, and then list specifically what I need from the people preparing my food: washed hands and new gloves, separate fryer/pan from anything cooked with gluten, verifying any sauces or spices are gluten free, flagging my order with an allergy alert, etc. I keep a list of restaurants where I’ve been able to eat safely and, to be honest, I don’t stray far from them! Unless I’m feeling extremely brave, I only eat at places where I know I won’t be “glutenized,” as we say in my house. It’s terrifying to roll the dice at a new place!

What I didn’t realize until I had celiac disease, though, is how social eating is in our culture. If I want to catch up with a friend, more often than not they’ll ask to meet at a restaurant. If we’re celebrating a birthday, anniversary, retirement, baby shower, or anything else, there’s likely cake involved. Holiday get-togethers include big meals and plates full of gluten-y dessert. And for those of us with celiac, all of these come with polite “no thank yous” when we are offered food, sitting out celebrations, bringing our own food, or sweating it out wondering if we’ll be glutenized. We find ourselves answering well-meaning questions about why we aren’t partaking of the food that’s being offered, trying to find a simple way to explain cross contamination, or feeling high-maintenance for turning down food or being particular about what and where we eat.

The social toll is the thing I struggle with the most, and it’s the aspect of celiac disease I didn’t anticipate. I knew I would grieve certain foods, and I even made a bucket list in the weeks leading up to testing of all the things I wanted to eat “one last time.” I can find gluten-free alternatives and adjust to a different diet. But the frequency with which celiac disease gets in the way of my social life is really hard.

I’m not the only celiac out there who feels the weight of this disease. My fellow celiacs know only too well how isolating and frustrating this disease can be! One of the questions my family and friends often ask is, “How can I help?” It’s one of my favorite questions in the world when it comes to chronic illness, because it opens the door to honesty and being able to verbalize what will actually make life easier. If you are wondering the same thing, here are just a few things that might help your friend or family member with celiac disease.

  1. Don’t take it personally if we turn down food, even if it’s gluten free. And don’t be offended if we bring our own food. You may have the very best intentions in the world, but unless you live with celiac disease or I am sure beyond a doubt that the food is safe, it just isn’t worth the risk to me. Many of us can be sick for days or weeks after eating gluten. We appreciate the offer of food, but weighed against the potential suffering, it’s very hard to take the risk.
  2. Ask us what we CAN eat. If you really want to help us by providing a meal (we’re always up for not having to cook for ourselves!), then ask us what we can eat. There are some products, delivery services, and restaurants that we trust and know are reliably gluten free, and we would love a meal from them. No, it’s not the same as cooking a meal for us. But in the end, it accomplishes the same thing: we get out of cooking, and you provided tangible help and support.
  3. Be willing to eat at the same place–every time. Yes, it’s boring. Yes, there are probably many other places you’d like to eat. We’d love a little more variety too! But when we’ve found a place that’s safe for us, we’ll likely keep going back again and again. It’s terrifying (and dangerous!) for us to risk a new place where we might be exposed to gluten, so most of the time, we’ll stick with what we know and trust.
  4. Offer to spend time together somewhere that doesn’t involve food. Restaurants are natural meeting places, we know this. And we love to gather around the table. But sometimes removing food from the equation eliminates the pressure we feel to put ourselves in dangerous situations (or to feel awkward for sitting there without food while everyone else eats). If you want to spend time together, plan alternate places to meet up: a park, a store, a bookshop, a museum, etc. If you really prefer to meet around a table, consider meeting up for drinks instead of food.
  5. Be willing to learn–and really take it seriously. We’re happy to teach you what we’ve learned. We’re happy to show you what it takes to cook safely for us. But understand that this is serious for us, and that you will have to be meticulous. We’d love to teach you everything we’ve learned about this disease, if you’re willing to learn! So let’s cook something together–carefully.
  6. Listen and try to understand how this feels. It’s not “just food.” It’s not that we’re high maintenance. It’s not a minor thing. Living with celiac takes a big toll every day on something that’s very foundational to our lives. If we need a minute to vent, please listen and try to understand. If we shed some tears when we’re trying to pick a restaurant, don’t assume we’re being dramatic. If we’re particular about things, don’t think we’re high maintenance. Listen to us and put yourself in our shoes for a minute to try to understand. Sometimes empathy is all we need!

If you live with celiac disease, what are the things you find most challenging? What would you find helpful? I’d love to hear your comments below!

2 responses to “Living with Celiac Disease”

  1. I don’t have celiac disease so this is a really great insight. I’ve learned more about the condition from another blogger who has it too and I’m so glad for those like you who share your experiences. I’ve got a stoma bag (ileostomy) and have to be careful with food, but that’s such a tiny degree of what you have to consider at home or away from home. Cross-contamination concerns must be really damn difficult to deal with, and I can imagine the social aspects being pretty exhausting too unless you can be sure of what’s what before you go.

    Caz xx

    Like

    • I’m glad this helped you gain some insight into what it’s like to live with celiac disease. To be honest, even though I had friends and family with it, I never really considered the broad impact it has on so many fronts. I imagine you have significant challenges of your own with your ileostomy! We all make the lifestyle adjustments necessary to cope with our illnesses, but I think it can only help to hear one another’s stories and better understand what it’s like to walk in a different pair of chronic illness shoes!

      Liked by 1 person

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