Frequently Asked Questions

A: There are at least three ways to determine if a product is gluten-free; sometimes you'll want to do all three, just to make sure.

Read labels. Reading labels is a way of life for celiacs. Label reading should be  covered when you meet with a dietitian. Learn to read them carefully, and try to memorize safe and forbidden ingredients. The first several times you shop, you should bring a print-out of the safe and forbidden ingredients and additives lists to the store with you. It's important to read product labels because companies will often substitute ingredients when making a product, changing its gluten-free status. Just because a product is gluten-free today doesn't mean it will be the next time you buy it.

Text taken from Going Gluten-Free pamphlet with permission.

Call manufacturers.

Shopping tip
Take your cell phone with you while you shop. If you're shopping during business hours and find a product with questionable ingredients, you can call the toll-free number on the package and make sure it's gluten-free while you're still in the store.

Check a gluten-free shopping guide or the Internet. There are several shopping guides that you can buy (check your local support group or the Internet to find them), as well as free listings of gluten-free products on the Internet (see the Resource section at the end of this guide). Also, many stores and restaurants list their gluten-free products and menu items on the Internet, or will mail them to you if you call. Remember, ingredients change, and product guides and listings can become outdated, so you still need to periodically call manufacturers.

A: People have sensitivities to many different things. Celiacs tend to assume that when they feel badly, it must be because they've ingested gluten, yet that's not always the case. People with celiac disease also can have allergies or difficulty with absorption of some sugars. Symptoms related to food should be discussed with your physician. It is important to thoroughly check out the foods you're eating. Have the ingredients changed? Are there suspect ingredients that could contain "hidden" gluten? Or do you react to the food for an entirely different reason? The bottom line is that if a food doesn't sit well with you, talk to your doctor.

A: No. Celiacs have a variety of responses to gluten, ranging from no symptoms whatsoever to severe distress. Gluten is harmful to celiacs, whether there are symptoms present or not. Sometimes someone will accidentally or intentionally ingest gluten and have no reaction, and may assume they have "outgrown" the condition. No one outgrows celiac disease. Symptoms may not be present or overt, but gluten is always toxic to celiacs.

A: Usually not. In fact, most labels do not list gluten as "gluten." Instead, the label will say "wheat," "flour," "barley," "malt" or another ingredient that may have gluten in it, such as "flavorings." It's important not to make assumptions when you're reading labels. For instance, "flourless" means there's no wheat flour, but there could be sprouted wheat or other gluten-containing grains. And it's important to remember that while gluten-free may mean a product is wheat-free, wheat-free doesn't mean gluten-free. It's true that labeling is improving, but there still are no labeling laws specifically regulating gluten-free products in the United States, so all labels should be examined closely.

The Food Allergen Labeling and Consumer Protection Act (FALCPA) was signed into law by President Bush Aug. 2, 2004 (Public law 108-282). FALCPA applies to food products that are labeled on or after Jan. 1, 2006

The new law requires:

• Food statements to list in plain language what, if any, of the eight main food allergens (milk, egg, peanuts, tree nuts, fish, crustacean shellfish, soy and wheat) are contained in the product.

• Allergens to be listed if used in spices, natural or artificial flavoring, additives and colorings.

• The FDA to examine how best to address the problem of unintentional contamination and cross-contact of foods, and determine the best way to inform consumers with food allergies about the risk of cross-contact.

• The FDA to issue a proposed rule that will define and permit the voluntary use of the term "gluten-free" on the labeling of foods by August 2006 and a final rule no later than August 2008.

Source: The Gluten Intolerance Group of North America.

A quick lesson in reading labels

Q: Are there listings or publications that can help me determine if a product is gluten-free?

A: Yes. There is helpful information at http://www.gluten.net/downloads/print/GIG%20Diet%20Instruction.pdf and http://www.gluten.net/downloads/print/Easy%20Find%20Fix.pdf. In addition, some of the resources included in the "Resource" section of this guide will provide safe and forbidden ingredient listings. Remember, though, that there is no way to list all gluten-free products; you will need to do some checking on your own. Also remember that ingredients change, and listings can become outdated.

A: Obviously, it is a matter of personal preference, and you will develop a list of your favorite products. But if you're interested in others' opinions, contact your local support group and ask the members which products they enjoy. Sometimes support group meetings offer samples of products so people can try them. Members may also be able to direct you to stores in your area that carry gluten-free products.

The gluten-free diet is difficult – at first
It's easy to get caught up in the difficulties of this diet. Realize that it's OK to be angry, scared, frustrated and confused. Deal with those emotions in whatever way you find most therapeutic – confide in close friends, seek counseling or find other emotional outlets. When first diagnosed, many people with celiac disease never imagine that the intricacies of the diet will come easily; but before they know it, studying labels and ingredients becomes second nature.

A: Admittedly, this can be difficult at first. Eating away from home requires planning and patience. It's important to remember that your diet is your responsibility; don't be offended if others don't understand or meet your special needs. There are several tips for eating away from home in the books and resources listed at the end of this guide, and with time you'll learn which restaurants and friends are especially accommodating. There are a few basic tips that will make eating out easier.

1. Check the Internet for lists of gluten-free menu items. Many restaurants, especially the larger chains, have their gluten-free menu items posted on their Web sites. Some will even mail you a gluten-free menu.
2. B.Y.O.F. – Bring Your Own Food. Whether it's a small snack or an entire meal, you can't go wrong if you bring your own food.
3. Call ahead. Whether you're going to a friend's house or a restaurant, it's a good idea to call ahead and talk to the chef. Even restaurant chefs are glad to tell you what ingredients they use, and usually will arrange for your gluten-free meal to be ready for you when you arrive. Many will allow you to bring your own foods and will prepare them for you, especially if you call ahead. If you're going to a friend's house, offer to bring the dessert or another part of the meal that you can make gluten-free. Remember that contamination-free preparation and presentation are important considerations, too.
4. Fill up before you go. It's always a good idea to fill up before you leave the house. That way, if there is little or nothing you can eat, you won't starve.
5. Be assertive, but tactful. It can be embarrassing to ask a friend what they're preparing, talk to the chef at a restaurant, or ask to see a product so you can check ingredients. But it's crucial that you be assertive so that you avoid what could be painful and harmful mistakes.

Q: But it's my birthday – isn't just a little bit of cake OK?

A: No. Even if you are like some people who do not feel the symptoms from eating gluten, you can't sample, even a little. Instead, treat yourself to a candy bar, ice cream, gluten-free cake, or one of the other many delicious gluten-free delights that are available today.

Feeling deprived?
There's no need to feel deprived on the gluten-free diet. Many commercial products, including candies and candy bars, chips, ice cream, and pudding (many of which are available at any grocery store) are gluten-free (call the manufacturer and read labels to be sure). But even pretzels, crackers, cookies, brownies and cakes aren't necessarily off limits, thanks to some excellent sources of gluten-free products now available online, by phone and at specialty stores.

A: This is worthy of several chapters in a book (see the Resource section at the end of this guide). A few basic tips will help.

Empower your child. As parents, our goal is to raise well-adjusted children who will be able to live healthy, gluten-free lives – and you won't always be there. Involve your child in his or her condition, no matter how young he or she is; read labels with him or her, encourage him or her to make food choices (help, but don't do it for your child), and allow your child to help with food preparation and menu selection. Teach your child to gracefully decline well-meaning friends and family who offer forbidden treats.

Educate the teachers. Provide your child's teachers with as much information as they will accept about the condition and the diet. Copy the lists of safe and forbidden ingredients or gluten-free product listings from the Internet or books, and have your teachers keep them on file. If they will read the books or information contained in some of the other resources listed at the end of this guide, offer to buy or lend them a copy. Make sure they understand your child's symptoms, so that if he or she accidentally ingests gluten, the teacher will be aware of the consequences.

Send a lunch. It is possible to let your child buy lunch at school, but it takes planning, coordination and cooperation between you and your lunch provider. In the beginning, it is best to send a gluten-free lunch and snacks to be safe.

Provide the teacher with treats. A large bag of Halloween-sized candies works well to leave with the teacher, in case there are surprise birthdays or unplanned events involving snacks or treats. If you know of a party or birthday, bring your child a special cupcake – or better yet, bring gluten-free cupcakes for the entire class.

A: Dermatitis herpetiformis (DH) is sometimes referred to as a "sister" to celiac disease. It presents as a severe, itchy skin rash. Everyone with DH has intestinal damage, but generally without the gastrointestinal symptoms. Only about 5 percent of celiacs have these external symptoms of DH.

Treatment for DH is the same as for celiac disease: a strict, gluten-free diet for life. Sometimes, though, people with DH also must avoid iodine. Drugs such as Dapsone can be used to control the itch for the first few months until the gluten-free diet kicks in. However, Dapsone does not heal intestinal damage, has significant side effects and needs to be monitored with frequent blood tests. Dapsone helps the DH subside and the gluten-free diet keeps the skin rash under control.

A: Most celiacs who eat gluten experience a reaction, whether it's gastrointestinal in nature, headache, irritability, joint or muscle pain, or another symptom. Usually the response occurs within four to six hours after ingesting gluten; it's important to think back on the foods you've eaten to determine what you ate that may have contained gluten, so that you can avoid that product in the future.

If you do ingest gluten, the most important thing to remember is that you'll be OK. Don't panic. Mistakes will be made, and you'll survive them. There is no need to call 911 and no need to call or see a doctor. Be sure to make note of what you ate so you can avoid it in the future. Most importantly, don't let a mistake derail you from sticking to a 100 percent gluten-free diet. If you make a mistake, learn from it and get back on track.

Talking to friends and family about celiac disease
Everyone you talk to about this condition is likely to have a completely different reaction. Some will understand and put forth a lot of effort to learn about the diet; others will have a hard time accepting the diagnosis and may not be receptive to information about the condition. If you have trouble explaining it to others, use the resources listed in the back of this guide to help you. Loan books to people, refer them to websites, and encourage them to learn more about the condition. The better they understand it, the more support they will provide.

A: For specific dietary concerns, you should always consult a dietitian or your physician. But the gluten-free diet can be a very healthy diet, and one that does not have any harmful effects.

Who else should be tested?
In first-degree relatives, the incidence of celiac disease is 1 in 22. For second-degree relatives, the incidence is 1 in 39. And remember, many of these people either have no symptoms whatsoever, or have symptoms that are not considered "classic" for celiacs. If you or your child has been diagnosed with celiac disease, all first- and second-degree relatives should have the blood screen for celiac-related antibodies every two or three years. Encourage your family members to get tested – you may dramatically improve their lives.

Another diagnosis! Celiac disease and other conditions
It is common for someone with celiac disease to be diagnosed with or to have additional conditions, such as diabetes, Down syndrome, lupus, arthritis, or thyroid disease. Often, these other conditions were diagnosed before celiac disease, so the diagnosis of celiac disease can be especially painful, begging the questions, "what now?" or "why me?" (or your child).

While it may seem at first as though this is insult upon injury, the truth of the matter is that once you begin the gluten-free lifestyle, you likely will find that symptoms arising from other conditions may improve and the quality of your life be enhanced. Certainly you will have more energy, and your body, finally able to absorb important nutrients, will be stronger and better equipped to withstand stress and trauma.