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Celiac Disease and the Gluten-Free Diet

Getting Past the Initial Shock

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Updated December 13, 2009

You’ve just been diagnosed with celiac disease and you need to follow a strict gluten-free diet. You’re allowed a wide variety of foods – but they can’t contain wheat, barley, or rye (or any derivatives of these grains). Even microscopic amounts must be avoided in order to protect your intestines and reduce your risk of serious complications.

It’s a difficult diet to get used to, but don’t despair. Lots of resources are available to help you learn to thrive on it.

The Celiac Disease Diet: The Initial Shock

Whether you were sick for a long time or not sick at all, you need to be gluten-free for the rest of your life. Your doctor probably gave you handouts with information about what’s gluten free and what’s not. Maybe you also got information on local support groups or a dietitian. Even harder, maybe it's your child who was diagnosed, not you.

Before we know the whole truth, we hear: Gluten comes from wheat, barley, and rye –- and we need to stay away from most oats, too. Whoa. No bread? No pasta? No cakes, no cookies? No oatmeal, pancakes, waffles? Nothing breaded, nothing battered? Ever? Are you kidding?

Hidden Sources of Gluten

But that’s only half the challenge. The reality soon becomes clear: gluten is not just in the obvious places. It makes soups and gravies thicker, and salad dressings creamier. It keeps yogurt and soft cheeses from getting runny, and dried spices from clumping in their little jars. It can be in the molds that give chocolates their shape. It keeps candy bars from sticking to the factory conveyor belt. It can be hidden in the “natural flavoring,” “modified food starch,” and “textured vegetable protein” added to food products. It’s in veggie burgers, turkey burgers, and hot dogs. It’s in chewy candies. It’s the filler in pills and tablets. It hides in lipsticks, toothpaste, and mouthwash. (And if your celiac person is a small child who still puts everything in her mouth, watch out for crayons and Play Doh, because those contain gluten as well.) Even if gluten is not an ingredient in the product you’re buying, it might have been an ingredient in another product manufactured at the same time as yours, in the same processing plant, and cross-contamination may have occurred.

What It All Means

For the rest of your life, you'll need to be vigilant about what you eat. Unless you are absolutely certain that a food has no gluten hidden in its ingredients or contaminating it from other sources, you shouldn’t even taste it.

Maybe someone told you that it could be worse. You don’t need major surgery. You don’t need chemotherapy, radiation, or toxic medicines with side effects. All you need is to change your diet. In your heart, you know this is true.

But for now, there is no way around the painful truth: you’re going to be losing foods --and food rituals -- that you love. It will get easier after a while, and you’re going to feel much better than you ever did before. You’re going to feel strong and healthy, and you'll avoid lots of celiac disease complications. But at first, it’s going to be hard. In fact, if you feel grief-stricken, you’re not unreasonable.

What You Need To Do

Carry with you and memorize the guidelines for the gluten-free diet. These guidelines should be taken merely as a starting point. Contact a local celiac disease support group, and talk to a registered dietitian. Read some of the many helpful books that are available, and send copies to the friends and relatives you spend the most time with so they can learn, too.

Tell your family and friends –- and even selected co-workers -- about your diet. (One reason to tell your family is that there’s a strong genetic component to celiac disease. If you have celiac disease, your relatives are at a higher risk for it.) Give them opportunities to rise to the occasion and help you stay safely gluten-free. As hard as it can be to follow a gluten-free diet, it is almost impossible to do it in secret.

Check the gluten-free status of items in your pantry, and learn how and where to shop for gluten-free food. Find out which stores near you publish lists of their gluten-free products. Take advantage of mail-order companies that will ship gluten-free food (even ready-to-eat meals) to your door.

Become accustomed to the idea of calling manufacturers to check on the gluten-free status of individual products. Usually, there’s a toll free number on the package. (If the product turns out to be safe for you, ask if the manufacturer will send you a coupon for a free sample.) Because manufacturers often adjust ingredients or switch suppliers, you'll need to recheck the gluten-free status of your favorite products periodically.

Be careful when you dine out. Read our tips for gluten-free dining in restaurants. You'll need to learn some new skills: how to interview the waiter and when to second-guess the chef. You’ll also need to know some basics about how restaurants prepare food.

Take Heart!

Finally, a word of encouragement. Once you’ve gotten the hang of it, you’ll be eating a rich variety of delicious foods. In fact, you’ll probably be eating a much healthier diet than you do now. The gluten-free diet allows unprocessed vegetables, fruits, meats, eggs, seafood, dairy products, nuts, rice, corn, potatoes, and much more. Foods can be flavored with spices, herbs, garlic, shallots, onion, and wine. Balsamic vinegar, rice vinegar, cider vinegar and wine vinegar are OK. Sauces can be thickened with corn starch or potato starch instead of flour. You’ll learn to make (or buy ready-made) delicious gluten-free pastas, cakes, cookies, cereals, and even breads.

Guests at my house almost always tell me, after they’ve been with me for a few days, “Nancy, you really can have everything on this diet! You’re not missing anything!” Of course, that’s not right –- I can’t have gluten. But honestly, I don’t miss it, and soon you won’t need to miss it, either.

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