Just Diagnosed with Celiac Disease: Now What?

Get these 10 tips to gluten-free success for the just-diagnosed celiac.

If you’ve just been told that you or a family member has celiac disease, it’s likely your head is spinning with information overload and you’re in a daze of disbelief. A celiac diagnosis isn’t the worst thing but it can feel like the end of your world—at first.

I was diagnosed more than ten years ago by a gastroenterologist who didn’t offer any guidance about how to live my life gluten-free. Although I commend him for finally discovering the reason behind the ailments that had stumped doctors for many years, when he informed me that I had to change my lifestyle, he didn’t include instructions on how to do it. Since then, I’ve spoken to celiac groups and taught gluten-free cooking classes around the country and I can confirm that my experience was not unique. People are often left with more questions than answers after their diagnosis and they can feel woefully unsupported.

Fortunately, it’s never been easier to embark on a special-diet lifestyle. Follow these tried-and-true steps to be on your way to a happier and healthier gluten-free life.

1. Understand Celiac Disease

Make a point to learn all you can about your condition. Read recently published books written by acknowledged experts and turn to websites run by national celiac organizations, noted celiac research centers and trusted publications. The Internet offers a wealth of material but some of it is erroneous or, at minimum, conflicting. Be sure to verify data and make certain your sources are reliable. As you learn more about the disease and your new lifestyle, you can explore other resources with more confidence and better scrutinize the information being proffered.

2. Build a Celiac-Speciality Medical Team

Consult with a doctor and nutritionist who specialize in celiac disease. We’re fortunate to have a number of celiac research and treatment centers located throughout the United States. If you’re not currently receiving specialized celiac care, consider seeking out the closest celiac center. A good nutritionist can answer your questions and get you off to a good start on the gluten-free diet. Over the years, it’s a smart idea to see an expert physician for regular check-ups and follow-up blood tests to be certain you’re not inadvertently ingesting gluten. Celiacs are typically susceptible to related medical conditions, ranging from lactose intolerance and osteoporosis to other autoimmune disorders, and an alert doctor will be able to work closely with you to lower your risks.

As an important aside, a specialist can counsel your relatives about whether they should undergo blood tests or genetic screening for this inherited autoimmune disorder. Your family members–particularly first-degree relatives–are at risk for contracting the disease. Undetected and untreated, celiac disease can wreak havoc on the immune system and set loved ones up for serious medical problems in the future.

3. Join a Celiac Disease Support Group

Chances are there is a celiac support group within short driving distance from where you live or work. If you don’t consider yourself the support-group type, I urge you to reconsider. These groups offer a wealth of information, food samples, tips for local restaurants, physician recommendations, recipes and, of course, friendship and emotional support.

If your child is now gluten-free, a support group dedicated to kids and their families is a must. These groups organize meetings, parties, picnics, field trips and so much more. Plus, they are an invaluable source for kid-friendly activities and restaurants in your town, not to mention summer camps and food brands.

4. Purge Your Pantry of Gluten

This step includes cleaning or replacing the items in your kitchen where gluten contamination can occur: scratched pans, the toaster, your food mill and breadmaker, among other items. Do the homework to truly understand cross contamination, gluten-containing ingredients and food labeling, so that your kitchen becomes a safe haven that you can rely on for tasty, uncontaminated foods.

If someone in your household plans to continue to eat gluten, organize your cabinets so that no gluten-containing foods are mistakenly used. Use clear plastic bins in your pantry to segregate items so there are no mix-ups when unpacking the groceries or when reaching for cereals or snacks. Color-code pans, utensils and the like with fun-colored duct tape so that it’s easy to tell which are dedicated for gluten-free use.

If all this seems too much for you, encourage the gluten-eaters in your family to join your gluten-free lifestyle. It’s easier and causes fewer headaches (and stomachaches!) if you’re all in this together.

5. Stock the Gluten-Free Basics

Use this time as an opportunity to improve your overall diet by choosing simple, nutritious, unprocessed foods. Most whole foods are naturally gluten-free. At the same time, buy some prepared items, like frozen pizzas, pasta, soups, pretzels and other favorite snacks—whatever you enjoyed eating before going gluten free. Having these on hand will keep you from feeling deprived and help you avoid the temptation to cheat. Try a few different brands to figure out which you like best. Then stick with them for at least six months or until you’re comfortable enough with your new diet to branch out.

The best ways to find tasty alternatives and avoid wasting money (gluten-free commercial products are expensive!) is to get connected with other consumers—yes, a support group—and to attend gluten-free fairs at local natural food stores where you can sample different items before buying.

You’ll also want to stock some gluten-free baking mixes and a reliable all-purpose gluten-free flour blend. After my diagnosis, it didn’t take me long to become frustrated with recipes calling for six gluten-free flours, all different from the ones I’d needed for the last recipe I’d tried. I had cabinets bursting with more flours and gums than I’d even known existed just months before. Worse than the clutter was the expense. Find an all-purpose flour blend that can be used for almost everything from fish sticks and tempura to birthday cake and sandwich bread. Once you’ve gained confidence, you can then experiment with the growing variety of tasty alternative gluten-free flours made from whole grains and seeds. These offer rich flavor, nutrients and fiber that will enhance your culinary repertoire.

6. Dust Off Your Apron 

Even if you’ve never baked from scratch, consider doing it now. Despite all the new gluten-free products available, many just don’t taste like the foods you remember. That’s where you and your oven come in.

Any item you enjoyed prior to your diagnosis, you’ll be able to enjoy once again, gluten free. Bread, cookies, cake, muffins, pizza—you’re limited only by your imagination. A growing number of wonderful websites and cookbooks offer excellent advice.

Again, this is where you’ll thank your support group. These new friends will give you recipes, baking tips and cookbook and website recommendations worth their weight in gold.

You can start with gluten-free mixes and then ease in to your own from-scratch recipes. As you grow accustomed to this new way of cooking, expect a few culinary setbacks. But be assured that you’ll become a pro at creating some amazing treats your whole family will love. You may even discover that you have a knack for cooking.

7. Buy a Designated Gluten-Free Bread Maker

A good bread machine can be your new best friend. This little helper can produce a scrumptious loaf of soft, fresh bread in less time than you may expect. Unlike yeast breads containing gluten, gluten-free dough doesn’t require the laborious kneading, punch-down and double-rise cycles. Thus, in less than an hour and a half, the heavenly smell of baked bread can fill your kitchen. Imagine sandwich bread, French toast, bread pudding, stuffing–all your favorites in very little time and not much fuss.

8. Patronize Local Businesses

You’ll feel better once you figure out the dining spots in your town that serve safe foods. If there are no chain restaurants that offer gluten-free menus nearby, such as Outback Steakhouse or P.F. Chang’s China Bistro, develop a relationship with a small local eatery with an agreeable chef who’s willing to work with you. Become a repeat customer–give them every reason to want to serve you. The same holds true for your local natural food store or grocery. Ask the manager to stock safe items you’ll purchase with regularity. Encourage them to group the gluten-free foods together to make shopping easier.

9. Don’t Settle for Mediocre Taste and Narrow Food Options

Just because you are now eating a gluten-free diet doesn’t mean you don’t have the right to enjoy delicious meals. Trust me. I’ve tasted more than my share of just plain awful gluten-free food. If you’ve done the same, don’t buy it, don’t order it and don’t make it. Once you know it’s possible that your food can be just as good as (if not better than!) wheat-based foods, you’ll become adamant about wanting only the best. If we all demand better, companies and restaurants will have to respond with delicious products.

The “Must Have” section of every issue of Gluten Free & More magazine will bring you the latest and greatest gluten-free food items. We try everything so you don’t have to!

10. Exhale

Relax. It’s going to be all right. Your diagnosis is a life sentence, not a death sentence. You’ve been handed the opportunity to largely control your health by what you choose to put into your body. Without a  prescription, you can heal yourself simply by taking charge and changing a few of your foods. Now don’t you feel better already?

Written by Jules Shepard, originally published in Gluten Free & More.