Living With Celiac Disease? Make Time for Self-Care

Living with celiac disease and saying no often go hand in hand. A lot. It’s no to your friend’s home-baked cookies. No to snacks in the office breakroom. No to dinner at a trendy restaurant.

Why? Because you just don’t know if or when gluten will sneak past you. It can seem like you’re always on high alert, and “no” is the only word you say. This can leave you feeling left out and frustrated.

Learning how to live with celiac disease can be both painful and stressful. Avoiding gluten can feel like a full-time job on top of everything else you need to do each day. After all, you’re busy planning meals, going to work, reading labels and keeping flares at bay. It probably seems easy to avoid self-care, too. But maybe it’s time to explore saying yes, especially when it comes to taking care of yourself.

“The first year after diagnosis is usually the hardest. It’s a complete lifestyle revamp,” says gastroenterologist Claire Jansson-Knodell, MD. “You need to think about gluten every time you eat. A lot of social activities revolve around food. So, you can have a lot of anxiety about going to parties, dating and meeting new people. You want to find time for self-care.”

A big part of living with celiac disease means practicing self-care every day. But it doesn’t have to be something expensive or time-consuming. Even little things can make a big difference — physically, mentally and emotionally.

Why self-care is important when you have celiac disease

Coming up with a self-care plan can help lessen stress and anxiety. It can make you feel better about all this change. And it can help you feel better about your quality of life as you move toward having a healthier gut.

It’s important to remember that celiac disease self-care is about building good habits that you can stick to. It’s the same as learning how to avoid gluten and watching for the telltale signs of a flare. You’ll learn what works best for you and keep doing it. Soon, it will feel like second nature.

Celiac disease self-care tips to practice regularly

When you hear “self-care,” do you at once picture a luxurious spa, fluffy robes, face masks and massages? It sounds great (and relaxing), right? But there are also many other, smaller ways to care for yourself when you have celiac disease.

Keep up with your medical appointments

Avoiding gluten is only one part of celiac disease care. You’ll still need regular check-ups and testing as part of your ongoing disease management. But Dr. Jansson-Knodell also sees medical visits as an important aspect of self-care.

“You want to make sure your vitamin levels are good,” she says. “And you also want to keep your healthcare provider updated on any symptoms you’ve been having. Staying on top of your health through medical appointments and testing is key.”

Adopt the buddy system

Making lifestyle changes can feel easier with friends and family on your side. You don’t have to do any of this alone. Tell them about what’s going on. They can help you in your quest to avoid all gluten. They can also help keep you motivated — and offer a listening ear.

Invite someone shopping with you to help read labels. Ask them to join you in the kitchen so you can learn about gluten-free meals together. Talk to them when you’re feeling down or frustrated. Or plan a fun outing together and enjoy the company of people you love.

There’s also another benefit to keeping family in the loop. Celiac disease typically runs in families, so it helps your family better understand their risk, Dr. Jansson-Knodell says.

“First-degree family members have up to a 20% chance of also having celiac disease. Sharing your diagnosis gives your family information that’s important to them and their health,” she continues. “I connect with a lot of new patients who came to get tested because of a family member’s diagnosis.”

Have fun in the kitchen

Following a gluten-free diet isn’t easy. It takes patience and practice. Often, you’ll find yourself eating at home — or bringing food with you to a gathering. So, why not experiment with gluten-free recipes and meal plans?

This is where a registered dietitian can be your new best friend. They can guide you through this new way of cooking — and eating.

Cooking can be a fun adventure. Trying something different in the kitchen expands your mind, palate and culinary skills. And it gives you a fresh outlook on a gluten-free life.

Take a walk (or run)

There’s no exercise prescription for people with celiac disease — but staying active helps the whole you. Exercise triggers good hormones, called endorphins, that help you feel happier. These hormones can also lessen pain. Working out can also give you more energy and better sleep.

Sounds great, right? But there’s something to keep in mind. When you have celiac disease, your body doesn’t always absorb nutrients as it should. When this happens, it can affect your bone mineral density and your ability to do weight-bearing exercises. So, see your doctor before jumping into an exercise routine.

“You may need to do a DEXA scan (bone density test), which measures bone strength,” Dr. Jansson-Knodell says. “The results help us decide what exercises will work best for you. We may also decide you need to take calcium and vitamin supplements.”

When you get the green light to start working out, you’ll want to shoot for about 150 minutes of moderate-intensity activity each week. That’s 30 minutes, five days a week. You don’t even need a gym membership. Even 30 minutes of gardening or raking leaves can count toward those minutes. Get creative about making it fun.

You may also want to try yoga or meditation. They can help decrease stress, build strength, lower blood pressure and reduce chronic pain.

Talk to a therapist

Sometimes, celiac disease-related stress can be more than you can handle on your own. When that happens, it’s perfectly OK to get counseling. Your therapist is here to listen to your concerns and help you learn new ways to manage any anxiety, stress or depression. They can also refer you to support groups and other helpful resources from organizations like the Celiac Disease Foundation or Beyond Celiac.

Living with celiac disease can present a lot of challenges that can feel overwhelming. And it can trigger a lot of anxiety. It’s a big change — and change isn’t always easy.

But building (and sticking to) a self-care routine can go a long way to easing some of the stress that comes with a new way of life. One that will keep getting easier (and feeling better).

“It’s important to acknowledge and recognize all the hard work people with celiac disease do,” Dr. Jansson-Knodell notes. “It’s not an easy condition to live with. And each person has a very different and individual story to tell.”