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Chapter 6: Healthy and Safe Restaurant Eating with Celiac Disease or Gluten Sensitivity

by Carol Brunzell, RD, LD, CDE

Carol Brunzell is a registered dietitian and certified diabetes educator who has worked at the University of Minnesota Medical Center, Fairview, for the past 27 years. She specializes in counseling people with diabetes, cystic fibrosis–related diabetes, and celiac disease and diabetes. She is considered by many to be the go-to dietitian on living with diabetes and celiac disease. Due to her expertise, the author of this book requested that Brunzell contribute this chapter and the Tips and Tactics for Gluten-Free Eating you’ll find in the chapters in Sections 2 and 3.

Eating restaurant foods and meals, whether you eat them in the restaurant or take them out, when you have diabetes and celiac disease can be VERY challenging. There are many questions to consider. How can I be sure this or that food or meal is gluten-free? Having diabetes by itself is stressful, but adding celiac disease takes managing diabetes to a whole different level. More restaurants are aware of the importance of serving safe, gluten-free healthy foods and want to make sure your experience in their restaurant is pleasurable. It is important that you know how to find restaurants that are safe to eat in and know the critical questions to ask in order to keep your foods and meals gluten-free.

This chapter reviews the signs and symptoms of celiac disease and non-celiac gluten sensitivity, how these conditions are diagnosed, the basics of eating gluten-free, the gluten-free food labeling law and its impact on restaurant foods, and strategies to eat safely in restaurants. References are provided at the end of the chapter with lists of certified training programs for restaurants, support groups, gluten-free dining resources, and other celiac resources.

What Is Celiac Disease?

Celiac disease is an autoimmune disorder (just like type 1 diabetes) that occurs more often in people with type 1 diabetes. It has been estimated by the American Diabetes Association that about 10% of people with type 1 diabetes also have celiac disease, compared with about 1% of people in the general population (about 1 in 133 people). Having one autoimmune disorder increases your chances of having another autoimmune disorder, hence the link. The incidence of celiac disease in people with type 2 diabetes is not known, but has been estimated to be similar to the incidence rate in the general population.

In people with celiac disease, eating foods with gluten injures the lining in the small intestines. Gluten is a protein made up of gliadin and glutenin. It’s found in wheat and other grains. This causes the body to not absorb nutrients from food normally, which can result in a wide variety of health problems if not diagnosed or treated. The only treatment for celiac disease at this point is following a strict, lifelong gluten-free diet.

Signs and Symptoms

Celiac disease can be difficult to diagnose as symptoms are variable and may often be subtle. Symptoms vary because when individual nutrients are not being absorbed normally by the body, it can lead to all kinds of different health problems. Some symptoms of undiagnosed or untreated celiac disease include diarrhea, unintentional weight loss or poor weight gain, growth failure, abdominal pain, bloating, fatigue, constipation, vomiting, and malnutrition due to malabsorption of food nutrients. Some people who have celiac disease have a higher incidence of being diagnosed with bone diseases, such as osteoporosis, because they are not absorbing adequate calcium and vitamin D. Other people may develop anemia because they aren’t absorbing iron properly. People with diabetes and celiac disease may have unexplained hypoglycemia or blood glucose levels that are difficult to control for no apparent reason. Some people can develop neurological conditions like peripheral neuropathy or ataxia (the loss of full control of body movements) due to malabsorption of certain B vitamins. One manifestation of celiac disease that affects the skin is dermatitis herpetiformis, which occurs in about 15–25% of people with celiac disease. Dermatitis herpetiformis causes an itchy, blistering rash which mostly affects the knees, elbows, butt, scalp, and back in a symmetrical pattern (on both sides of the body). If these signs and symptoms sound familiar to you, mention them to your health-care provider.

Testing Recommendations for Celiac Disease

No one should begin following a gluten-free diet until they get a firm diagnosis from a health-care provider. Testing for celiac disease starts with a simple blood test that looks for certain antibodies. If this test is positive, then your health-care provider should order a biopsy of the small intestine. This test is considered the gold standard for diagnosing celiac disease. To ensure an accurate diagnosis, these tests must be done while the patient is still eating gluten.

Why Omit Gluten?

The gluten-free diet is currently the only treatment for celiac disease. To learn the ins and outs of following a gluten-free diet, it’s important to meet with a registered dietitian who is familiar with diabetes and celiac disease. Refer to the resource list at the end of this chapter to find a registered dietitian with this expertise. Following a gluten-free eating plan may seem overwhelming at first, especially since you are already dealing with your diabetes, so plan to meet with a dietitian more than once. There is a lot of information to learn, but you will get used to it with time. More importantly, once you eliminate gluten you will feel much better and your health will improve. There are many national and local celiac organizations that provide updated information and research, as well as help and support, for people with celiac disease. See the resource list at the end of the chapter for more information.

Fortunately, gluten-free foods are more plentiful and taste much better today than they used to. However, just because a food or menu item is called gluten-free, does not necessarily mean it is healthy. Many processed gluten-free foods are made from refined gluten-free flours and starches. They may be high in fat and calories and low in fiber, vitamin B, and iron. So just like you pay attention to your food choices for diabetes, it is important to choose healthy gluten-free food by reading food labels. Try to limit excess carbohydrate, fat, and sodium.

Once you remove gluten from your food choices, the intestinal damage can heal. The amount of time this takes varies from 6 months to 2 years. If you have celiac disease, it’s important to understand that if you eat gluten, injury to your intestinal lining may still be occurring even if you do not have noticeable symptoms of celiac disease. So to protect your health, carefully follow a gluten-free eating plan.

Non-Celiac Gluten Sensitivity vs. Celiac Disease

Gluten sensitivity or non-celiac gluten sensitivity is not the same as celiac disease. It is not an autoimmune disorder. It is considered a nonallergic, nonautoimmune reaction to gluten. It is typically diagnosed after all other possible digestive diseases causing celiac disease–like symptoms have been ruled out. People who have non-celiac gluten sensitivity feel much better when they eliminate gluten from their diets, but they don’t have the same health risks as people with celiac disease if they eat gluten. There is a lot we don’t know about this condition.

Basics of Eating Gluten-Free

People with celiac disease are advised to choose a well-balanced, healthy, gluten-free eating plan. Focus on the many foods you can eat, not the foods you need to avoid. Choose more whole or enriched gluten-free grains and products such as brown rice, wild rice, buckwheat, quinoa, amaranth, millet, sorghum, and teff (make sure they are labeled “gluten-free” because cross-contamination from equipment in processing plants can be a problem).

All fresh fruits and vegetables, fresh milk and yogurt, unprocessed lean meats, poultry, fish, eggs, peas, beans and legumes, unflavored nuts and seeds, and oils are naturally gluten-free. Do keep in mind that grains, legumes, and seeds can potentially have cross-contact issues. Check out the lists of gluten-free foods below to help you make healthy food choices.

Gluten-Free Grains and Flours:

• Amaranth

• Arrowroot

• Buckwheat

• Corn, cornstarch, corn bran, natural popcorn

• Flax

• Millet

• Montina® (Indian rice grass flour)

• Oats (labeled gluten-free)

• Quinoa

• Rice: brown, white, wild, rice bran, rice flour

• Sago

• Sorghum

• Soy

• Teff

• Whole beans/legumes and flours (garbanzo, lentil, pea, kidney, black, red, pinto, white, etc.)

• Nut and seed flours (almond, hazelnut, pecan, sesame)

• Tapioca (also called cassava or manioc)

• Potato, sweet potato, yam, potato flour, potato starch

Other Non–Grain-Based Gluten-Free Foods:

• Fresh, frozen, or canned unprocessed fruits and vegetables

• Fresh meats, poultry, seafood, fish, wild game, eggs, some processed meats with gluten-free ingredients

• Dried peas, beans and lentils, tofu

• Milk, yogurt, and aged natural cheese made with gluten-free ingredients

• Oils, tree nuts, seeds, natural peanut butter, and salad dressings and spreads with gluten-free ingredients

• Sugar substitutes, sugar alcohols, honey, sugar, pure maple syrup, corn syrup, jams, jellies, candy and ice cream with gluten-free ingredients

• Pure spices and herbs, salt, soy or tamari sauce made without wheat, cider, and distilled and non-malt vinegars

• Coffee ground from whole beans, brewed tea

• Distilled alcoholic beverages (gin, vodka, whiskey, etc.) and wine

Reading Food Labels for Gluten

All foods sold in the U.S. are regulated by the U.S. Food and Drug Administration (FDA) and the U.S. Department of Agriculture (USDA). Most foods are under FDA jurisdiction. The following lists will give you an idea of the kind of foods and ingredients you need to avoid if you are eating gluten-free.

FDA Regulated Foods

When reading the labels for foods regulated by the FDA, look out for the following words/ingredients, which indicate that the food contains gluten:

• Wheat

• Rye

• Barley

• Malt and malt flavorings (e.g., malt vinegar, malt extract, malt flavor)

• Oats (which have not been labeled gluten-free)

• Brewer’s yeast

USDA Regulated Foods

Meats, poultry, eggs, and most packaged products prepared with meat, poultry, and/or eggs are regulated by the USDA. In addition, the USDA also regulates mixed foods, like tuna noodle casserole, which contain a percentage of meat or poultry. When reading the labels of these foods, watch out for the same ingredients in the list above (FDA regulated foods) and also look for these additional ingredients, which may be derived from wheat:

• Starch

• Modified food starch

• Dextrin

If you are not sure whether or not a food contains gluten, and the food is something you’d like to eat regularly, consider calling the food manufacturer. Food must contain the manufacturer’s phone number on the packaging of the product. Today many products also have the manufacturer’s website, which may contain the ingredient lists of their foods.

Gluten-Containing Grains and Grain Products:

• Atta (chapatti flour)

• Barley

• Bran

• Bulgur

• Communion wafers

• Couscous

• Cracked wheat/tabbouleh

• Durum flour

• Einkorn

• Emmer

• Farina

• Farro or Faro

• Graham flour

• Kamut

• Malt, malt extract, malt flavoring, malt syrup, malt beverages, malted milk, malt vinegar, matzo

• Modified wheat starch (it might just say “wheat starch” on the food label)

• Oatmeal, oat bran, oat flour, whole oats (that are not labeled gluten-free). Commercial oats have been found to be highly contaminated with wheat flour. They may also be contaminated with barley or rye grain. Oats that are labeled gluten-free are not contaminated and are safe to eat.

• Pasta, ravioli, gnocchi, lasagna, ramen, udon, soba, egg noodles, chow mein noodles, and dumplings

• Rye

• Semolina

• Spelt (dinkel is another name for spelt)

• Triticale

• Wheat, wheat bran, wheat germ, wheat berries, bread, croissants, pita, naan, bagels, flatbreads, cornbread, potato bread, muffins, donuts, rolls, or any unidentifiable grain or flour product

Other Foods That May Contain Gluten:

• Fruits and vegetables with sauces, breading, or thickeners

• Breakfast cereals with gluten-free grains but that contain malt flavoring or granola with regular (not gluten-free) oats

• Pancakes, waffles, French toast, crepes, muffins, and biscuits

• Flavored milk, flavored yogurt, processed cheese, and spreads made with gluten-containing ingredients

• Canned soups, soup mixes, bouillon, broth and soup bases, miso

• French fries fried in oil along with gluten-containing foods

• Processed meats and luncheon meats containing hydrolyzed vegetable or plant protein (HVP and HPP)—the protein source must now be mentioned on the ingredient list—breaded and battered meats, meats with sauce or gravy, seitan (made from wheat gluten, often referred to as Mock Duck), vegetarian burgers, vegetarian sausage, casseroles, or other mixed dishes made with gluten-containing grains

• Ground spices and spice mixes, seasonings, condiments, and soy sauce made with gluten-containing ingredients

• Salad dressings and dips with gluten-containing ingredients

• Candy and desserts such as cake, cookies, pie, brownies, bars, frozen yogurt, and ice cream with gluten-containing ingredients (like candy).

• Snack foods, crackers, pretzels, granola bars, energy bars, chips with gluten-containing ingredients

• Instant coffee, instant tea, instant cocoa mixes, with gluten-containing ingredients

• Fermented beverages including beer, ale, lager, porter, pilsner, and stout

Commonly Overlooked Sources of Gluten:

• Breading, bread stuffing, dressing, panko breadcrumbs

• Breadcrumbs added to meats such as meatballs or crab cakes

• Broth/bouillon

• Coating mixes

• Communion wafers

• Croutons

• Imitation bacon

• Imitation seafood

• Marinades

• Modified plant and vegetable protein (the protein source must now be mentioned on the ingredient list)

• Some salad dressings

• Processed meats

• Roux (flour and water mixture to thicken dishes)

• Sauces/gravies

• Seasonings

• Self-basting poultry purchased uncooked (injected with broth)

• Smoke flavoring

• Soup bases and cream-based soups

• Soy sauce, teriyaki sauce (check the label, some may contain small amounts of gluten and may not be gluten-free)

• Thickeners

FDA Regulations for Gluten-Free Foods in Supermarkets and Restaurants

In late 2013, the FDA issued new rules for foods that are labeled “gluten-free.” This ruling was several years in the making because it was necessary to first determine the threshold of safety for gluten in foods for people with celiac disease and to determine the most reliable testing method to detect gluten in foods. The FDA’s new rule became effective in 2014. This rule requires that a food labeled gluten-free:

• Cannot contain wheat, barley, rye or a crossbred hybrid of these grains.

• Cannot contain an ingredient derived from wheat, barley, rye, or a crossbred hybrid of these grains that has not been processed to remove gluten.

• Can contain an ingredient derived from wheat, barley, rye, or a crossbred hybrid of these grains that has been processed to remove gluten, but with final product containing less than 20 parts per million gluten.

• Must contain less than 20 parts per million gluten, whether gluten comes from an ingredient or is in the food unintentionally due to cross contact.

The FDA states that any use of an FDA-defined food labeling claim on a restaurant food, including “gluten-free,” should be consistent with the same regulatory definition used on supermarket foods.

Skills and Strategies for Safe Restaurant Eating with Celiac Disease

First and foremost, it’s important to be very familiar with the gluten-free eating plan and the potential for cross-contact or cross-contamination with gluten-containing foods. Cross-contact or -contamination means that the gluten-free food has been cooked with or has touched one or more gluten-containing foods during preparation and is no longer considered gluten-free.

Whenever possible, go to restaurants that have a gluten-free menu and have training or certification though one of the celiac disease organizations. To find these restaurants, see the links under Restaurants with Certified Gluten-Free Training or Accreditation (below). This will help you to trust that the restaurant is knowledgeable about gluten-free dining and the importance of using gluten-free ingredients and preparations that are free of cross-contamination. Many national chain restaurants and smaller local restaurants are certified.

Regardless of whether or not a restaurant is certified, it is still important to ask questions before you eat there. Here are a few steps to take to make sure that the food you order will be gluten-free:

1. Check out the restaurant’s menu ahead of time. The restaurant’s menu will likely be posted on their website (if they have one). If you eat in certain chain restaurants frequently, contact the corporate office to inquire if they have a gluten-free menu or check out their website.

2. If this is a special occasion or an unusual situation, call the restaurant ahead of time, preferably when they are not busy, and speak with the owner, manager, and/or chef. Tell them about your gluten-free diet needs and, if possible, make a reservation ahead of time so they know you are coming. Ask them if they have a gluten-free menu and if they’ll be willing and able to meet your needs.

3. Ask what precautions the restaurant takes to ensure that the food is not cross-contaminated with gluten-containing ingredients or products, with these questions:

* Do they understand the need to keep your food free from cross-contact/cross-contamination with gluten-containing foods?

* Do they have a separate storage and preparation area for gluten-free menu items?

* Do they know what ingredients to look for on food labels to detect gluten?

* Do they use separate cleaned utensils, cooking pots, pans, and strainers for the gluten-free food?

* Do they clean the grill before gluten-free foods are made?

* Do they have a dedicated fryer for gluten-free foods?

Once you get to the restaurant, don’t assume that just because you called ahead, you do not need to continue to ask additional questions. Here are a few more strategies to help you order gluten-free once you get to the restaurant:

1. Introduce yourself to your server and tell them you have to follow a gluten-free eating plan. Note that you can’t eat anything with wheat, barley, rye, or oats (unless the oats are gluten-free). Ask for a gluten-free menu if it’s available.

2. In the resources at the end of this chapter, you’ll see a listing of gluten-free dining card resources. Having a dining card in hand to give to your waitperson can help you explain your needs.

3. Don’t be hesitant to ask questions. Even if the restaurant has a gluten-free menu, it is important that you still ask your server the right questions to avoid potential mistakes. Talk with your waitperson, the manager, or chef (if possible) about your gluten-free needs.

4. Most restaurants, especially sit-down restaurants that prepare food from scratch, do take special requests. Don’t be intimidated, they want you to have a pleasant dining experience and come back. If there is no gluten-free option available, tell the server exactly what you want and how it should be prepared. To minimize challenges, you can usually put together restaurant meals that combine naturally gluten-free foods, such as lean meats, poultry, seafood, vegetables, and fruits, without breading, sauces, or toppings. Ask the server to show you food labels if you are not convinced that an ingredient or food is gluten-free. As a last resort, bring some of your own foods such as gluten-free sauces or salad dressing, bread or crackers, or gluten-free pasta and ask the chef to prepare it in a clean pot and use a clean strainer.

5. Understand that, realistically, there is no way any restaurant can completely guarantee that the food will be 100% gluten-free. The gluten-free diet is complicated, so it is not realistic to expect that employees will know as much as you do. Be cautious, courteous, and diligent when you eat out.

6. When your food arrives, double check with the server that your meal is gluten-free. Ask again about sides, topping, and sauces to ensure that nothing was added to your food. If you are not confident that the food is gluten-free, either send it back or go without. It is better to not eat rather than risk eating food that can make you sick. If you take insulin to cover the rise of glucose for meals, don’t take it until you are confident that the food is safe to eat. (Read more in Chapter 5 about delayed meals.)

7. Unless you are dining with another person who also has celiac disease or non-celiac gluten intolerance, do not split or share food with others. Portion sizes may be too large, so gauge how much you want to eat before you start. If the portion served is too much, ask the server for a to-go container right away, pack half of it up before you start eating, and put it aside. This way you’ll already have a future lunch or dinner!

8. Thank the restaurant personnel when you have had a good experience. Leave a good tip for the extra work they did to assist you. They will remember you and appreciate your feedback and hopefully your continued patronage and that of others who must eat gluten-free!

Pitfalls of Healthy Restaurant Eating with Celiac Disease

Healthy eating and a gluten-free diet are not always compatible. A gluten-free diet does not automatically equal a healthy eating plan. Many gluten-free foods can be just as high in fat and sodium as their gluten-containing counterparts and they may be high in refined flour or starch. For example, a slice of gluten-free bread may contain more carbohydrate than a slice of wheat bread. As always, it’s important to pay attention to what you order and how it is prepared. Additionally, you want to look for hidden sources of gluten in restaurant foods. Keep the following pitfalls in mind when eating to manage celiac disease and diabetes at a restaurant.

1. Many restaurants offer refined grains such as white rice. Try to order gluten-free whole grains whenever possible, such as brown rice, wild rice, quinoa, or others (see the list above). Risotto or polenta are also options. Ask if the grain is cooked in water rather than a stock that may contain gluten. Other gluten-free starch alternatives are baked potatoes or baked sweet potatoes, or beans such as kidney, garbanzo, black beans, split peas, or lentils. Mashed potatoes may be made from a mix that contains gluten and hash browns may also contain gluten, so if you want these, ask how they are prepared.

2. Meats, poultry, fish, and seafood in restaurants are frequently served fried or battered or with sauces, gravies, or breading. Not only are these dishes high in fat but they typically contain gluten. Egg dishes may contain wheat flour. Request that egg or meat dishes be grilled, roasted, broiled, baked, or lightly sautéed with olive oil on a cleaned surface with fresh herbs or spices and lemon.

3. Most soups are high in sodium and also contain gluten (flour, soup base, bouillon cubes, noodles, barley) unless otherwise noted. If the restaurant prepares their soup from scratch, ask what the ingredients are. If there are no gluten-containing ingredients, broth-based soups are a better choice than cream-based soups, as they are lower in total and saturated fat.

4. Plain steamed vegetables are always a good bet, or you can order them lightly sautéed in olive oil and garlic in a clean pan. If you order a salad, be sure to tell the server you cannot have any croutons or other toppings that may contain gluten. Olive oil and balsamic vinegar (or another non-malt vinegar) is a healthy dressing for salads. Make sure your salad is prepared separately from other salad-making ingredients that may contain gluten.

5. Desserts in restaurants are typically very high in sugar and fat and typically have one or more gluten-containing ingredients. You can always be safe with fresh fruit.

6. Wine and hard liquor are gluten-free. All beers, ales, stouts, and porters contain gluten. However, there are a variety of gluten-free beers available. Make sure the beer is “gluten-free” and not “low-gluten.”

Eating out with diabetes and celiac disease can be challenging, but it’s easier than it used to be. Be prepared, call ahead of time, ask the right questions, and over time you will become more confident communicating your needs clearly to restaurant staff. They want you to have an excellent dining experience just as much as you do! Get specific advice about eating gluten-free in different types of restaurants in the chapters in Sections 2 and 3 under Tips and Tactics for Gluten-Free Eating.

Resources

Restaurants with Certified Gluten-Free Training or Accreditation

• Gluten Intolerance Group: http://www.glutenfreerestaurants.org/

• National Foundation for Celiac Awareness: http://www.celiaccentral.org/great-gluten-free-foodservice-training/

• Celiac Sprue Association: http://www.csaceliacs.info/gluten_free_restaurants.jsp

Gluten-Free Dining Cards and Celiac-Friendly Restaurants

• Triumph Dining: http://www.triumphdining.com/products/gluten-free-dining-cards

• Celiac Support (Sprue) Association: http://www.csaceliacs.info/shop.jsp

• Gluten Intolerance Group: http://www.glutenfreerestaurants.org/

• National Foundation for Celiac Awareness: http://www.celiaccentral.org/great/gluten-free-dining-card-tips-887/rev—2/

• Gluten Free Passport: www.glutenfreepassport.com

• Celiac Travel.com: http://www.celiactravel.com/cards/