How to Navigate a Celiac Diagnosis After 50

A dietitian can help you learn how to read food labels to spot hidden sources of gluten, which can lurk in unsuspecting places like salad dressings and soups, and how to minimize your risks of cross-contact, which is when a gluten-free food is exposed to a gluten-containing food, rendering it no longer celiac-safe.

A dietitian can also help you navigate interactions with family, friends and coworkers. “If you’re a traveler, we always talk about how to succeed in traveling and dining out,” Dennis says.

When Felsen and his wife met with a local dietitian, “she went through all the things we should be doing as a household and as a couple,” he says. “We changed everything in our house and our diet.” This included buying a separate gluten-free toaster for his gluten-free bread, since toasters are hard to thoroughly clean.

2. Become an expert

Not everyone has access to a celiac center, and it’s possible that your doctor may not be familiar with the ins and outs of navigating the disease. That’s why educating yourself is paramount, Dennis says.

When it comes to sources you can trust, Dennis points to the websites of the four national celiac organizations — Celiac Disease Foundation, Beyond Celiac, National Celiac Association and Gluten Intolerance Group — as great starting points.

3. Communicate your needs

“A lot of patients feel like they don’t want to burden their family by discussing what their needs are,” says Nancee Jaffe, lead dietitian for the Vatche and Tamar Manoukian Division of Digestive Diseases at University of California, Los Angeles (UCLA).

But if you don’t talk to your family about your diagnosis and have conversations about what your food needs are, then not only are you going to feel unseen when you’re dining at their home, you’re also putting yourself at risk for cross-contamination, Jaffe says.

When Robin Oliveira, 69, was diagnosed with celiac disease 20 years ago, she didn’t ask her husband and kids to go gluten-free with her — but her family made accommodations after she explained what she needed to do to stay safe. For example, they bought squeezable bottles of mustard and mayo so nobody could double dip, and she kept a separate jar of peanut butter.

How you approach a family member depends on your relationship with them. If it’s your daughter- or son-in-law who doesn’t understand what your needs are and they’re the main cook in the family, Jaffe suggests that you “blame the dietitian.” You could say something like, “My dietitian told me that I now need to follow these rules when it comes to dining.”

4. Shop for groceries wisely

Packaged gluten-free foods can be considerably more expensive than regular foods — up to 183 percent more, a 2019 study found — which can pose a problem for people on a fixed income, Kelly says.

One way to save money: “If you have particular products you really enjoy, calling the company can be a very successful way of getting coupons — and gluten-free coupons are usually a little bit more substantial,” Dennis says.

Another tip? “Shopping the perimeter of the store [for naturally gluten-free foods] and staying away from the center aisles where everything is packaged is going to be less expensive,” Dennis says. Some of the naturally gluten-free foods you’ll find in the perimeter of the grocery store include:

• Meat
• Fruits
• Vegetables
• Eggs
• Beans, seeds, legumes and nuts (unprocessed forms)
• Many low-fat dairy products

Shopping at a discount chain store for gluten-free products can also be cheaper, Dennis says. Ocean State Job Lot, for example, often has a big stock of discounted gluten-free flours and other products from Bob’s Red Mill, she says.

5. Find your safe restaurants

One of the trickiest situations for someone who has just been diagnosed with celiac is dining out at restaurants due to the risk of cross-contact. It can also be one of the scariest for patients, Jaffe says.

Her practice gives celiac patients a list of local restaurants they can use as a starting point. “But if you have other favorites that are important to you, this is where together we can look at the menu options to see if we think there are some safe options that could be consumed on premise,” Jaffe says.

RoseAnn Hamm, 69, who was diagnosed with celiac disease three years ago, checks menus first to see if there are gluten-free options marked, while Oliveira says she calls restaurants to find out if there’s anything she can eat. You can also visit the restaurant at an off-hour to talk to the manager or chef about what your needs are, the menu items you’re most interested in trying and whether they can prepare them safely for you, Jaffe says.

Both Dennis and Jaffe say some of the questions you’ll want to ask when dining out include:

• Does this protein have a sauce or marinade on it — and if so, is there any flour in it?
• Can you cook this item in its own pan for me, using separate utensils?
• Do you have a dedicated fryer for gluten-free foods?
• Do you cook your gluten-free pasta in the same water as regular pasta?

Oliveira and Felsen also use phone apps such as Find Me Gluten-Free to search for restaurants. While these apps can be helpful, Jaffe points out that reviews are user-generated and no one is vetting them. She recommends looking to see if the reviewers self-identify as having celiac disease (versus being gluten-free as a lifestyle choice) and how recent the reviews are.

“If it’s been more than a couple of months, I would not trust the reviews,” she says. There should also be more than a few reviews. “I want to see a dozen-plus who are saying they felt this restaurant worked well for them,” she says.

6. Be patient with yourself

“Anyone who’s had to go gluten-free for celiac disease knows that it is not an overnight process,” Jaffe says. Give yourself time to grieve the loss of your favorite foods and know that you will be able to find gluten-free alternatives, she says.

Both Jaffe and Dennis have celiac disease and have seen a big uptick in the availability of gluten-free options since they were diagnosed (17 and 34 years ago, respectively). “You’re riding a wave of awareness. If there’s any time to be diagnosed with celiac, it’s now,” Dennis says.

Also, know that you don’t have to be perfect. “We’re going to make mistakes, and that’s OK,” Jaffe says. If, on occasion, you’re accidentally exposed to gluten, Jaffe and Dennis encourage you to not beat yourself up. It’s the chronic exposure to gluten that can lead to long-term health complications, not a couple of accidental exposures a year, Jaffe says.

“You might feel awful, you might feel nothing — but it’s not the end of the world,” Dennis adds. She likes to remind celiac patients of this: “You’ve made a simple mistake, but you’re never going back to square one, when you were eating gluten before and didn’t even know you had this [disease].”