The Complete Guide. to Gluten-Free Living CELIAC

The Complete Guide to Gluten-Free Living www.nationalceliac.org 1.888.4.CELIAC

Table of Contents Definitions...4 How Will This Affect My Life?...6 Setting Up a Gluten-Free Friendly Kitchen...7 Gluten-Free Shopping and Label Reading...10 Gluten-Free Entertaining...19 The Gluten-Free Restaurant Experience...20 Being a Gluten-Free Guest...24 Traveling...26 About Ingredients...28 We re Here to Help...33 2

Dear Friend, Welcome to the National Celiac Association, a group dedicated to educating, advocating, and supporting people with celiac disease (CD), non-celiac gluten sensitivity (NCGS), Dermatitis Herpetiformis (DH), and gluten-related disorders. We are based in the Boston area, close to major celiac medical centers. Our collaboration with the Harvard Medical School Celiac Research Program guarantees that we have the most up-to-date information about research and treatment of CD. We also have chapters and members across the country, and we maintain relationships with support groups and health care professionals throughout the United States. As you begin your journey to live gluten-free, know that you are not alone. This packet is a starting point to move forward in living gluten-free. It provides an overview of how your lifestyle will change, and it offers practical, easy-to-follow tips on adapting your kitchen, shopping for gluten-free food, dining out, traveling, and entertaining at home. The packet also addresses many of the concerns you or your family are likely to have. If you have additional questions, please don t hesitate to contact NCA by phone or email or go on-line and find one of the NCA chapters in your area. We re here to help. National Celiac Association 1-888-4-CELIAC (1-888-423-5422) Monday Friday 10 AM 3 PM Eastern Time info@nationalceliac.org www.nationalceliac.org 3

Definitions What is celiac disease? Celiac disease (CD) is a genetic and permanent intestinal intolerance to gluten, which is a group of proteins found in wheat, rye, and barley. Derivatives of these grains (farro, spelt, bulgur, couscous, and farina, for example) also contain gluten. Gluten is toxic to people with CD, damaging the villi (finger-like projections which line the walls of the small intestine) and causing malabsorption of food and nutrients. What is non-celiac gluten sensitivity? People with non-celiac gluten sensitivity (NCGS) experience symptoms that are similar to those with CD. However, there is minimal to no damage to intestinal villi. There is no test to diagnose NCGS. A diagnosis of NCGS can be made once CD and a wheat allergy have been ruled out. Eliminating gluten from the diet is the treatment for NCGS. 4

What is Dermatitis Herpetiformis? Dermatitis Herpetiformis (DH) is an itchy, blistering skin rash that is associated with CD. In almost all cases, the small intestine of a person with DH is also damaged to some extent by exposure to gluten. DH is diagnosed via skin biopsy by a dermatologist. The treatment for DH is the gluten-free diet. What are the symptoms? Symptoms of CD, NCGS, and DH vary, can overlap, and may appear at any age. The range of symptoms includes, but is not limited to: diarrhea and/or constipation, bloating, gas, abdominal or intestinal pain, fatigue, anemia, inability to retain or gain weight, amenorrhea (absence of menstruation), headaches, depression and irritability, and dental abnormalities. Even people who report no symptoms ( asymptomatic ) with CD may experience serious complications, such as anemia or osteoporosis, later on unless they closely follow the gluten-free diet. What is the treatment? At the present time, only complete avoidance of gluten results in the healing of the damaged intestine and overall improved health in CD and DH. Strict, lifelong adherence to a gluten-free diet is necessary in order to maintain normal gastrointestinal function and avoid potential complications. Please do not start a gluten-free diet without first confirming the diagnosis of CD, NCGS, or DH with your doctor. The diagnosis of CD is based on blood tests and a biopsy of the small intestine. If testing is done AFTER a gluten-free diet is started, blood tests can normalize, the small intestine may heal, and your doctor will be unable to make an accurate diagnosis. 5

How Will This Affect My Life? Living with celiac disease is all about eating. All your activities related to shopping for, preparing, serving, and eating food will now be affected. Knowledge and planning will enable you to eat well. Over time, you will learn which restaurants offer gluten-free menus or are willing to adapt their preparations to your diet. You will learn to communicate your special dietary requirements to restaurant staff, friends, and family members. You ll become a superb advocate for yourself, your child, your spouse or loved one. Through our magazine, e-newsletter and the member portal on our website, you will gain insights into how to live a gluten-free life with relative ease. At our conferences, you will be able to meet gluten-free vendors and sample their products. Knowledgeable professionals, as well as those who have successfully mastered the diet, will provide you with tips and advice on the GF diet and lifestyle. It is essential to pay attention to how foods are prepared and the ingredients they contain. Reading food labels for the presence of wheat, rye, barley, and oats (commercial oats are commonly contaminated by gluten) will become routine. 6

Setting Up a Gluten-Free Friendly Kitchen Make your kitchen GF friendly to make it easy to prepare delicious and healthy meals at home. Take stock of your kitchen as it was, and then: Begin to read all food labels and keep a list of gluten-free products handy for future reference. Sort through the foods you have on hand in your freezer, refrigerator, and pantry shelves. Identify which foods contain gluten (all traditional bread products, pizza, pasta, cake, cookies, etc.). Check your packaged goods and sauces, looking for ingredients such as wheat as a thickener or malt as a flavoring. Notice how many foods are naturally gluten-free (fruits, vegetables, unadorned meats, fish and poultry, cheese, and a large variety of GF grains, beans and legumes, such as rice, corn, and lentils). Make sure to store any gluten-containing foods in a way that eliminates the risk of cross-contact or leakage. Place items with gluten in separate cabinets or on the bottom shelf. Individual types of GF flours should be kept in separate, sealed containers. Kitchen utensils, pots, and anything else that has had contact with gluten needs to be washed carefully or replaced. Avoid using wooden utensils, cutting boards, and rolling pins that have previously been used with gluten. As your knowledge of gluten-free products grows, keep a list so you can remember them when you shop. 7

Setting Up a Gluten-Free Friendly Kitchen continued Use a separate, new colander for gluten-free foods. A new toaster and bread machine should be purchased for dedicated use with gluten-free breads. Be careful of cross-contact from knives and other utensils that have been used to spread peanut butter, mayonnaise, mustard, jellies, etc. Watch out for cross-contact from the containers of condiments themselves. If, for example, you use a knife to spread jam on a gluten-containing piece of toast, then dip that knife back into the jam jar, the jam has probably become contaminated with gluten-containing crumbs. You might choose to keep two jars of such spreadables, making sure to label the GF one. Squeeze bottles are also a good option. If you decide to make your kitchen gluten-free, please remember that the gluten-free diet is not recommended for someone for whom it is not medically necessary. If an individual with CD/NCGS/DH shares a kitchen with those who eat gluten, consider setting up a system that strikes a balance between all members of the family/household. 8

Safe See page 32 for Safe List Adapted References All grains, starches, and flours made from the foods below must be labeled gluten-free, except for plain rice: Amaranth Arrowroot Bean flours Buckwheat Cassava Chia (seed, flour) Coconut flour Corn (grits, meal, starch, flour, bran) Flax (seed, flax seed meal/flour) Legume flours (chick pea, lentil)* Mesquite flour Millet Nut flours (almond, hazlenut) Oats** Potato (flour, starch) Quinoa Rice (flour, bran, wild rice, rice blends) Seed flours (pumpkin, sunflower) Sorghum Soy (flour, soybean) Tapioca (flour, starch, pearls) Teff Yam flour Yucca flour * See page 18 ** Only select uncontaminated oats and oat products that are labeled gluten-free. See NCA website for information on safety, selection, and introduction of labeled glutenfree oats under medical supervision. Not Safe 1 Wheat, including all varieties, such as spelt; khorasan; einkorn; emmer; and most forms, such as wheat starch (unless labeled gluten-free), wheat flours (for example, semolina), wheat bran, wheat germ, cracked wheat, and hydrolyzed wheat protein Rye Barley (including most forms, such as malt, malt flavoring, malt extract, and malt vinegar) Brewer s Yeast Crossbred varieties of gluten-containing grains, such as triticale (a cross between wheat and rye) Oats (unless uncontaminated oats and oat products labeled gluten-free) 9

Gluten-Free Shopping and Label Reading The key to gluten-free shopping is to familiarize yourself with the labeling laws. The following excerpt, included on pages 10-11, comes from Thompson T. The Celiac Disease Nutrition Guide, 3rd ed. Academy of Nutrition and Dietetics, Chicago, IL, 2014. See reference 1 on page 32 for a link to the booklet. Text in brackets [ ] has been added by NCA. Under the Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA), if an ingredient in an FDA-regulated [U.S. Food and Drug Administration] packaged food product contains protein from wheat, the word wheat must be clearly stated on the food label, either in the ingredients list (for example, wheat flour) or in a separate Contains statement (for example, Contains Wheat). FALCPA applies to the labeling of packaged foods (including dietary supplements) regulated by the FDA. It does not apply to pet foods, cosmetics, prescription and nonprescription drugs, foods regulated by the USDA [U.S. Department of Agriculture], or beverages regulated by the Alcohol and Tobacco Tax and Trade Bureau (TTB). [2] [For information on alcoholic beverages, see the NCA website.] 10

FALCPA applies to ALL ingredients, including modified food starch, dextrin, flavorings, colorings, and incidental additives. In addition, if a spice or seasoning mix includes an ingredient containing wheat protein, the word wheat must be clearly stated on the food label. In addition to wheat, FALCPA requires that manufacturers identify 7 other major food allergens in a food product s ingredient list or Contains statement: milk, eggs, fish, Crustacean shellfish, tree nuts, peanuts, and soybeans. [Notice that the law does not require labeling for barley (or malt) or rye, which are the other grains of primary concern to people with CD, NCGS, or DH. When reading labels for barley, you will find it most often in the form of malt. Rye generally turns up in rye bread. Those grains were omitted as part of the give-and-take necessary to get a law passed that would cover the main offending allergens.] Manufacturers of United States Department of Agriculture (USDA) regulated foods, such as meat products, poultry products, or egg products, are NOT required to follow FALCPA. However, almost all manufacturers of USDAregulated foods voluntarily comply with allergen labeling. End of excerpt. 11

Gluten-Free Shopping and Label Reading continued How Can I Determine if an FDA Product is Gluten-Free? 1,2 Step 1: Look for the words gluten-free on the front or the back of the package. You may also see the phrases no gluten, free of gluten, and without gluten. These phrases are equivalent to the phrase gluten-free. Please note that any product made with a grain, flour, or starch should be labeled gluten-free. Step 2: If the food is NOT labeled gluten-free it does not mean that it contains gluten. But, it is now necessary for you to review the ingredients list and Contains statement to see if there are words that indicate if gluten is present. If it is not labeled gluten-free, is wheat in the ingredients list or are the words Contains Wheat near the ingredients list? If Yes, Stop! This product is not gluten-free. If No, Proceed to Step 3. Step 3: Read the ingredients list. Do you see the words Barley, Malt (unless a gluten-free source is named, such as corn malt), Rye, Oats* and/or Brewer s yeast (Yeast extract/autolyzed yeast extract)?** If Yes, Stop! This product is not gluten-free. If No, the ingredients in this product are gluten-free and it is safe to eat.*** * People with celiac disease are advised to consult with their physician about including gluten-free oats in their diet. ** For more information on additional ingredients, see pages 28-29. *** Please review the most important points about labeling and cross contact on page 16 before consuming any product NOT labeled gluten-free. 12

How Can I Determine if an USDA Product is Gluten-Free? Unlike the FDA, there is no official standard for gluten-free labeling of USDA products. These include: 1,2 Meat products (e.g. hot dogs) Poultry products (e.g. seasoned turkey breasts) Egg products (e.g. some liquid egg products) Mixed food products that contain certain amounts of meat or poultry (e.g. some stews and some chili). Look for the USDA seal if you are unsure whether a product is regulated by the USDA. However, the USDA does state that if a product has a gluten-free label, it should meet the same standard as FDA products. Step 1: Always look for the gluten-free label first. You may also see the equivalent phrases no gluten, free of gluten, and without gluten. Step 2: When you are looking at food that does NOT have a gluten-free label, it does not mean that it contains gluten. But, it is now necessary for you to review the ingredients list and Contains statement to see if there are words that indicate if gluten is present. Do you see the words Wheat, Barley, Malt (unless a gluten-free source is named, such as corn malt), Rye, Oats*, and/or Brewer s yeast?** If Yes, Stop! This item is not gluten-free. If No, does the product contain modified food starch, starch, and/or dextrin? If Yes, Stop! This product could contain gluten. 13

Gluten-Free Shopping and Label Reading continued Modified food starch, starch, and dextrin are possible, but not common, sources of gluten in these products. If you don t see a gluten-free label, contact the manufacturer to ask the source of the modified food starch, starch, or dextrin, or avoid the product until you can find out more information. The name and address of the company is a required feature on all USDA labeled products. If No, the ingredients in this product are gluten-free and it is safe to eat.*** * People with celiac disease are advised to consult with their physician about including gluten-free oats in their diet. ** For more information on additional ingredients, see pages 28-29. *** Please review the most important points about labeling and cross contact on page 16 before consuming any product NOT labeled gluten-free. 14

The Gluten-Free Labeling Rule The FDA published the final rule for the labeling of food as gluten-free in 2013. Food manufacturers are not required to use the term gluten-free on labels. If they choose to, it must meet the FDA s gluten-free labeling requirements. To be labeled gluten-free the food must: 1,2 Be naturally gluten-free, such as bottled water or a bag of raw carrots, or Meet both of the following criteria: The food does NOT contain an ingredient that is a gluten-containing grain (such as wheat). The food does NOT contain an ingredient derived from a glutencontaining grain that has not been processed to remove gluten (such as wheat flour). A gluten-free food MAY contain an ingredient derived from a gluten-containing grain that has been processed to remove gluten (such as wheat starch), as long as use of that ingredient in the food does not cause the food to contain 20 or more ppm of gluten. A gluten-free food must contain less than 20ppm of gluten, regardless of whether the gluten comes from an ingredient in the food or is in the food unintentionally due to cross-contact. The phrases such as made with no gluten-containing ingredients, not made with gluten-containing ingredients, and low gluten are NOT equivalent to gluten-free. 15

Gluten-Free Shopping and Label Reading continued Important points about cross-contact and labeling: 1. Cross-contact may occur anywhere gluten-free food comes in contact with gluten, including the field or factory. Some gluten-free foods are processed in facilities that only make gluten-free food, but the manufacturer may use ingredients that have been contaminated with gluten. Other gluten-free foods are made in shared facilities and/or on shared equipment with gluten. This does NOT necessarily mean that the food is unsafe or is contaminated. It does make it very important that all manufacturers test their gluten-free products to be sure that they contain less than 20ppm gluten. 1 2. Many naturally gluten-free foods and beverages (for example, bottled water, a can of olives, plain diced tomatoes, olive oil) have little or no risk of cross-contact with gluten-containing grains. In these low-risk cases, it is generally safe to buy the food or beverage even without a gluten-free label. Other foods, such as grains and flours, energy bars, candy, etc., have a much higher risk of cross-contact. In these higher-risk cases, it is recommended to choose foods labeled gluten-free. 1 16

3. Gluten-free foods that list wheat ingredients: Some products are labeled gluten-free but include the word wheat in the ingredients list or Contains statement. This labeling may seem odd. However, it is allowed because certain ingredients derived from wheat may be included in foods labeled gluten-free as long as the final food product contains less than 20ppm of gluten. Examples are wheat starch, modified food starch (wheat), and ingredients that may be made from wheat starch, including dextrin (wheat), maltodextrin (wheat), glucose syrup (wheat), and caramel (wheat). Under the FDA s gluten-free labeling rule, if a food is labeled gluten-free and also includes the word wheat in the ingredients list or Contains statement, the following must be added to the label, {The wheat has been processed to allow this food to the meet the Food and Drug Administration requirements for gluten-free foods.} 1,2 4. If you have questions about manufacturing practices that could result in cross-contact or concerns about any of the ingredients, a call or message to the food manufacturer may be helpful. As you shop, you will begin to mentally group foods into four categories: Items that are naturally gluten-free, such as unprocessed and unadorned fresh meats, poultry, fish, and produce Products that obviously contain gluten, such as breads, pastas, pizza, cookies, cakes, and so on Specially made and clearly labeled GF breads, pastas, pizza, cookies, cakes, etc. Prepared foods, such as frozen entrées, soups, deli items, and dairy products that may require further label-reading and perhaps on-line research in order to determine whether they are gluten-free. All whole gluten-free grains and products made from gluten-free grain, flour, and starch (e.g., bread, crackers, energy bars, cereals, protein powders, etc.) should be labeled gluten-free, showing that there is no risk of cross-contact. 17

Gluten-Free Shopping and Label Reading continued Bulk bins: Avoid purchasing items from bulk bins since there is a great risk of cross-contact with gluten-containing ingredients stored next to or above the gluten-free ones. Scoops can also be easily contaminated when used for items from a different bin. It is recommended to purchase gluten-free items that are packaged by the manufacturer and labeled gluten-free. Lentils and Legumes: Lentils and other legumes are allowed by law to contain a certain percentage of foreign grain, including wheat, barley, and/or rye unless they are labeled gluten-free. However, whether the lentils and other legumes you buy are labeled gluten-free or not, rinse canned ones thoroughly under running water. Pour dry legumes onto a cookie sheet, pick through them, and then rinse thoroughly under running water. [See https://www. glutenfreewatchdog.org/news/general-product-warning-check-your-lentilsincluding-certified-gluten-free-lentils-for-foreign-grain/] Nuts and Seeds: Nuts and seeds may be cross-contaminated with glutencontaining grains in the facility. Choose labeled gluten-free nuts and seeds when possible, particularly seasoned or dry roasted. It s important to note that wheat free does not necessarily mean glutenfree. For instance, breads labeled wheat free might contain rye or other grains, which are not allowed on the gluten-free diet. 18

Gluten-Free Entertaining Once you master the GF diet for yourself, you don t have to make changes when cooking for others. You can make many recipes gluten-free with relatively minor alterations. To thicken a gravy or stew, for example, substitute gluten-free flour, cornstarch, or arrowroot for wheat flour. Use gluten-free croutons on salads. You can make lasagna with gluten-free noodles. Most people won t notice the difference. How about a gluten-free barbecue with grilled meats, fresh vegetables, and salads? For desserts, serve fruit, sundaes, and meringues. Make some of your favorite fried foods by substituting GF breadcrumbs, GF flour (including nut flours), or crushed GF corn flakes. It s all about planning. Make sure, by the way, to add one or more of the growing number of terrific GF cookbooks to your kitchen bookshelf. And look for tasty GF recipes in every issue of the NCA magazine, e-newsletter, and on our website. Holidays may present special challenges as you try to recreate favorite family recipes with gluten-free ingredients. With time and experimentation, however, you will discover many fine substitutes. And if you know that some family members just won t find Thanksgiving to be the same without Aunt Jane s recipe for gravy or stuffing, encourage them to make it for themselves and others, but make a safe alternative you can enjoy. Likewise, if you think your guests would prefer the bread, crackers, or rolls they are familiar with, you can provide them, or you can ask your guests to bring them. Provide substitute items for yourself. Remember, avoiding cross-contact is essential when you are eating. When you entertain at home, you have absolute control over the food you eat. Show off those new gluten-free recipes you have worked on. And, in the words of Julia Child, bon appetit! 19 19

The Gluten-Free Restaurant Experience There are a lot of opportunities to eat out at restaurants that cater to those with CD, NCGS, and DH. Restaurants fall into several categories: Restaurants that are entirely gluten-free (rare, but they do exist) Restaurants that have separate gluten-free menus Restaurants that do not have separate gluten-free menus but clearly indicate which items are already gluten-free or can easily be made gluten-free Restaurants which will accommodate your gluten-free needs with care and competency Restaurants that are hesitant to serve you for fear they cannot do a good job 20

It is our responsibility to do our homework before dining out. The bedrock of this is our knowledge of the gluten-free diet and how food is prepared. Our website (www.nationalceliac.org) has a list of gluten-free and gluten-free friendly restaurants. Many smartphone apps are available to help you find suitable restaurants. The Internet, in general, is a good resource. For ethnic restaurants (and for times you travel) there are restaurant cards in many languages that explain the gluten-free diet, the ingredients we cannot eat, and a description of cross-contact. Your work, however, is not over! You will need to continue to communicate your gluten-free needs throughout the dining out process. When you make a reservation, alert the host that you need to eat gluten-free. When you arrive at the restaurant, telling the person who is seating you is optional. However, that person will often bring this to the attention of the waitstaff and/or the manager. Determine whether there is a separate gluten-free menu. When the waitstaff arrives, announce that you are the person who needs to eat gluten-free. When the food arrives, confirm that the order you are getting is, indeed, gluten-free. Does this sound like a lot of work? It certainly is, but it is the process whereby you can allow yourself to venture out to a world of culinary delights. 21

The Gluten-Free Restaurant Experience continued Tips for dining out gluten-free: Review menus in advance to get an idea of which items are likely to be safe and which are to be avoided. Call the restaurant at a quiet time to inquire about gluten-free options. Always bring a gluten-free dining card that explains the diet. These are available through NCA, and one is located in the back pocket of this booklet. Let the staff know that you have CD, NCGS, or DH; this diet is medically necessary, not a choice. Tell the staff that you must avoid food, sauces, soy sauce, marinades, and salad dressings that contain or come into contact with wheat, rye, and barley, even in tiny amounts. Emphasize the need to avoid cross-contact. Bring gluten-free bread and crackers to the restaurant, if you like. Some restaurants will let you bring your own pasta. Make sure it is cooked in fresh water, not water that was used to cook gluten-containing pasta. Never take a chance with the food. If your salad arrives with croutons or your hamburger with a bun (not gluten-free), insist that this dish needs to be re-made from scratch because of the cross-contact. Soups are rarely gluten-free. Au jus almost always contains gluten. Believe it or not, some restaurants add flour to mashed potatoes or eggs; double check this. Rice dishes are often enhanced by spices, broth, or other hidden gluten, such as orzo (wheat). Make sure yours is gluten-free. 22

If you are ordering fried food, make sure it is prepared in a dedicated fryer (one not used to fry anything with gluten). If something doesn t look right, do not hesitate to question it. It is better not to take chances. If you have any doubts about the restaurant s ability to feed you, order as plainly as possible (plain broiled fish, chicken or steak, plain steamed vegetables and a baked potato). If the restaurant staff makes a genuine effort to respect your diet, make sure to show your appreciation by thanking them sincerely, by tipping generously, and perhaps by offering a positive review on-line. Some members write about their restaurant experiences for the NCA magazine and add their favorites to our on-line database. 23

Being a Gluten-Free Guest Accepting an invitation to share a meal at a friend s or relative s house can be one of the most important parts of a relationship. When we add our gluten-free requirements, however, it can present some very complicated dynamics. It is amazing how different friends and family can be when it comes to understanding and honoring our diet. Some will call and discuss the menu with you in advance. Others will think they know about the diet and become defensive if you remind them. Still others might be casual about not having much for you to eat. Some will set aside food so that you don t risk cross-contact. Others may choose to create an entirely gluten-free dinner for you and all of their guests. Whether the event is a family gathering, barbecue, potluck meal, or formal dinner party, the issues will always be the same: what will be safe to eat and how will you communicate your gluten-free needs? At many events, you will likely be able to find at least a few items that you can eat safely, such as some types of chips, most cheeses, fruit and vegetable platters, and undressed, crouton-free salads. However, your approach to eating at these events will depend on your comfort level, the kind of party it is, and the relationship you have with the host. 24

In order to eat safely: Check with the host or chef to determine which dishes will be safe. Offer to bring a contribution (gluten-free, of course, ensuring that you can eat something). Get permission from your host to interview other guests to find out what you can eat if it is a pot luck meal. Be first in line at a buffet so you can avoid cross-contact of the foods you can eat. These are new skills. Each one of us needs to assess our own comfort level as we ask for special consideration. However, it is never impolite to take care of your health. Avoiding gluten is your goal. And, don t forget to write a note to your host to thank them for their efforts. Although this can end up being a straightforward, safe experience, there are times that are more challenging, especially around holiday dinners. Every family has its own traditions; when it comes to foods, many of those traditions include gluten. Some family members are willing to make the adjustment to make the stuffing gluten-free, for example, but a gluten-free pumpkin pie might not be welcome. Offering to bring some of these traditional dishes can often be a good solution. If someone is offended that you are not willing to taste just a little bit of the dish you ate for years, it is time to take a breath and remind yourself that a little bit of gluten is not worth the risk, even for the sake of family harmony. Negotiating this with friends and relatives will become easier over time. 25

Traveling If you love to travel, don t let having CD, NCGS, or DH stop you. There are ways to navigate a safe, gluten-free trip no matter how you are traveling and where you are going. You already have the skills to communicate your gluten-free needs. You know how to shop locally. Finding gluten-free shopping and dining options away from home is as easy as searching the internet and contacting local NCA celiac support groups. If you plan to travel internationally, finding restaurant cards in just about every language is easy on the web. No matter how you travel or where you are going, bringing along a few of your favorite gluten-free foods can be comforting. Most cities have stores that carry gluten-free foods; research ahead of time either on-line or by contacting a local NCA celiac support group. For convenience, you might want to carry GF cereals, snacks, breads, pastas, energy bars, and crackers. 26

A few additional tips: For car travel, fill a cooler with gluten-free goodies. GF snacks, breads, bagels, frozen waffles, energy bars, sandwiches, and cookies will ensure that you won t go hungry. Some international airlines offer gluten-free meals. Ask and arrange for one when you reserve your flight (and identify yourself as soon as you get on the plane so someone else doesn t get your meal!). Bring some GF staples in your carry-on in case you are delayed. At hotels/motels, ask for a room with a refrigerator and microwave. Some places may let you store your gluten-free items in their kitchen refrigerators. Contact your tour company or travel agent before booking a trip to find out how your gluten-free needs will be accommodated. Look for travel companies that cater to gluten-free clients. Contact local NCA celiac support groups for restaurant and shopping recommendations or look over the restaurant list on NCA s website. If renting a house, consider bringing your own toaster bags (they can be found on-line) and a few utensils, pots, and pans that you know will be safe. 27

About Ingredients Knowledge is power. Here s some useful information on a few food ingredients that usually set off alarm bells among people with CD, NCGS, or DH. For information on other gluten-free/gluten-containing ingredients and frequently overlooked sources of gluten, visit the NCA website. Oats NCA is concerned that some manufacturers are not adequately testing their oats for gluten, or using methods to sort and then test their products that are inadequate. Sound information about the safety of gluten-free oats is greatly in flux at this time. Please check our website for the most up-to-date information available. Artificial Flavorings These are blended from chemical compounds, so they are gluten-free. Color Additives These generally are derived from chemicals and dyes and are free from food allergens. Distilled Vinegar Vinegar made from wine, rice, balsamic, or apple cider is risk-free. White vinegar is also safe because it is made from corn and other gluten-free grains. Malt vinegar, however, is not gluten-free because it is made from barley. Malt This is a flavoring ingredient that is usually made from barley. It may be listed as malt, malt flavoring, malt extract, or malt syrup. Any product containing malt is not gluten-free, and must be avoided. Maltodextrin Maltodextrin is not related to malt. It is a sugar that is usually derived from corn, rice or potatoes. Even if it is made from wheat, the ingredient is considered gluten-free because the amount of gluten it would contain is highly unlikely to result in a food product to contain 20ppm or more gluten. 3 28

Modified Food Starch Most often this ingredient is made from corn. If it is derived from wheat starch, however, modified food starch may not be glutenfree. If an FDA-regulated product sold in the U.S. contains modified food starch which contains wheat protein, the word wheat will appear in the ingredients list or the Contains statement on the package. In USDA-regulated products containing wheat-based modified food starch, wheat may not be stated on the label. Food containing wheat-based modified food starch may be labeled glutenfree as long as the final product contains less than 20ppm. 3 Monoglycerides and Diglycerides These are fats used as chemical binding agents. They do not contain gluten, though occasionally wheat may be used as a carrier. If so, wheat will be listed in the ingredients list or the Contains statement on an FDA-regulated package. Natural Flavorings Unless wheat, barley, rye or malt is included in the manufacturer s ingredients list, or the Contains statement (wheat) on the package, the natural flavoring is probably free of gluten protein. 3 Smoke Flavoring When used as an ingredient in a food product, dry smoke flavoring may sometimes use barley malt flour to capture the smoke. It is not known at this time how often this occurs or how much gluten smoke flavoring may contain. 3 Contact the manufacturer if you have concerns about this ingredient. Yeast Extract/Autolyzed Yeast Extract These ingredients may be made from spent Brewer s yeast, a by-product of the beer brewing process. To be on the safe side, avoid yeast extract and autolyzed yeast extract UNLESS the product is labeled gluten-free. [3] [See the NCA website for more details.] 29

About Ingredients continued Cosmetics There is currently no scientific evidence that gluten used in cosmetics that are NOT ingested is harmful to individuals with CD, NCGS, or DH, particularly if hands are washed after applying. Hand lotion (if the individual uses a lot of lotion and does not wash his/her hands before eating) and products used in and around the mouth, such as lipstick and lip balm, are more suspect for potential, though likely minimal, gluten exposure. 4 Cosmetics free of gluten-containing ingredients can be found in the marketplace. More studies are needed on the gluten content of cosmetics containing ingredients derived from wheat, barley, rye, and oats, particularly for the lips and hands. Miscellaneous Sources Anything that goes into your mouth or nose should be checked for gluten. That includes medications (both prescription and over-the counter), supplements, gums and candies. Religious Observances There are gluten-free and low-gluten Communion wafers for those of the Christian faith, and unleavened, gluten-free, oat-based matzo for those of the Jewish faith. Allergen Advisory Statements One unintended consequence of the allergen labeling law is that many companies have added cautionary or may contain statements to their labels. A label with one of these statements might read, for example, Processed in a facility that also processes wheat, May contain wheat, or Processed on shared equipment with wheat. Products with these types of statements are not necessarily contaminated and products without them are not necessarily free of contamination. These statements are voluntary; manufacturers may choose not to include them on food labels even if their products are processed using shared equipment or facilities. All food is required to be processed using current Good Manufacturing Processes (GMP) to prevent unintentional ingredients, such as allergens, from ending up in a product. 30

When a product is labeled gluten-free under the FDA gluten-free labeling rule, the food must contain less than 20ppm. This rule applies even when an allergen advisory statement for wheat is also printed on the label. The rule applies to gluten that is in a product intentionally (an ingredient) and unintentionally (through cross-contact). 3 Regardless of the label, it is always a good idea to ask the manufacturer about steps taken to avoid cross-contact. A registered dietitian specializing in the gluten-free diet can help you find safe foods, recommend specific nutrients to balance your diet, and lead you to reliable resources to help you adjust to your new gluten-free lifestyle. Visit the NCA website to find a nationwide listing of dietitians who specialize in CD, NCGS, and DH. Frequently Overlooked Sources of Gluten or Potential Gluten Beer/Ale/Lager (unless labeled gluten-free; NOT gluten-reduced or gluten-removed) Breading and Coating Mixes Candy Communion Wafers Drink Mixes French Fries (shared fryers or gluten-containing ingredients) Herbals and Nutritional Supplements (e.g. probiotics) Imitation Meats/Seafood Licorice Marinades, Sauces, Gravies Matzo/Matzoh meal Medications and Vitamins/Minerals Panko (Japanese bread crumbs) Play Doh Processed Deli Meats Salad Dressings Seasoned Rice Mixes Soup base, Broth, Bouillon Soy Sauce, BBQ Sauce, Teriyaki Sauce Spice Mixes, Seasoning Mixes Thickeners (Roux) Wine Coolers This list is not comprehensive. If in doubt, call the manufacturer. 31 31

Additional Resources US Food and Drug Administration. Center for Food Safety and Applied Nutrition. Food Allergen Labeling and Consumer Protection Act of 2004 (Title II of Public Law 108-282). August 2004. www.fda.gov/food/guidanceregulation/guidance DocumentsRegulatoryInformation/Allergens/ucm106187.htm US Food and Drug Administration. Questions and Answers: Gluten-Free Food Labeling Final Rule. Updated August 5, 2014. www.fda.gov/food/guidance Regulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm 362880.htm US Food and Drug Administration. Food Allergies: What You Need to Know. Last updated 4/5/2017.https://www.fda.gov/Food/IngredientsPackagingLabeling/ FoodAllergens/ucm079311.htm Safe List (page 9) Adapted References from The Ultimate Guide to Gluten-Free Living. Celiac Disease Center at Columbia University, NY, 2017. Case, S. Gluten Free: The Definitive Resource Guide, Case Nutrition Consulting, Inc. Saskatchewan, Canada, 2016. References 1. https://www.eatrightstore.org/search-results?keyword=celiac+disease+nutrition +guide (See option for single copy of the book) 2. https://www.federalregister.gov/documents/2013/08/05/2013-18813/foodlabeling-gluten-free-labeling-of-foods 3. https://www.eatrightstore.org/product-type/pocket-guides/pocket-guide-to-glutenfree-strategies-second-edition 4. Thompson T, Grace T. Gluten in Cosmetics: Is There a Reason for Concern? J Acad Nutr Diet. 2012 Sp;112(9):1316-23 Edited by Melinda Dennis, MS, RDN; Reviewed by Amy Keller MS, RD, LD June 2018 32

We re Here to Help We hope that this booklet has answered some of your questions as you begin the gluten-free lifestyle. With time, you will grow confident and comfortable with the diet. Most importantly, you will feel better because your body will no longer be ingesting gluten, which is, after all, toxic to people with CD, NCGS, or DH. The NCA Board, thanks to our affiliates at the Harvard Medical School Celiac Research Program, keeps current about the most recent research and legislative activities. We pride ourselves on advocacy on behalf of our members and the medical community that provides our care. We welcome your input and questions, and invite you to attend our yearly conferences. We hope you will consider joining one of NCA s local support groups in your area. There is no better way to take care of yourself than by being part of the celiac community. We extend a warm welcome to you. Our mission is to support you in any way that we can. Contact us with any questions or concerns you may have. 1-888-4-CELIAC (1-888-423-5422) Monday Friday 10 AM 3 PM Eastern Time info@nationalceliac.org www.nationalceliac.org 33

Notes 34

Pocket Position FPO Business Card Holder Di-Cut

20 Pickering Street Needham, MA 02492 www.nationalceliac.org 1.888.4.CELIAC 6/2018