Gluten Free Basics
Gluten Free Frequently Asked Questions
- People who have been diagnosed with Celiac by a physician. These persons must maintain a strict GF diet to be healthy and to avoid serious auto-immune diseases.
- People who believe that they are gluten intolerant, or have learned that they are. They have health issues that improve with the gluten free diet.
- Some people who have a wheat allergy and find it easier purchasing foods that are gluten free. Though these folks should consult with their doctor first, since a person with Celiac is different than someone a wheat allergy. The standard that is often recommended for Gluten-free is less than 20 parts per million gluten. This may not be acceptable for someone with a wheat allergy. Also, there is no standard set in the United States at present, so some products that state “Gluten-free” may not be gluten free.
- There are also a group of people who are seeking a healthier diet, and think being gluten free might be the answer. There are some questions as to whether this might be the case.
2) What contains gluten?
Wheat, rye barley, and sometimes oats. Oats itself does not contain gluten, except that in the USA most oats are grown, harvested, stored and processed alongside wheat, sometimes using the same equipment. Therefore when these oats are tested, they contain wheat gluten. The most obvious products containing gluten are breads, crackers, cakes, cookies, and pasta. Also, as you read labels, you’ll see wheat, barley, malt (which is barley), and rye as ingredients.
Gluten is in many processed foods such as soups, sauces, salad dressings, frozen dinners, beverages, beer, and many other foods that will surprise persons new to this diet. Some meats that have added ingredients, such as basting or added liquids, contain gluten. One has to be especially careful with hams and bacon.
Reliable sources of guides for eating gluten free are Gluten Intolerance Group at www.gluten.net (in Auburn, Washington, phone 253-833-6655) and Celiac Sprue Association at www.csaceliacs.info ( in Omaha, Nebraska phone 877-272-4272).
3) When looking on the internet, there are so many gluten free sites and organizations, that I get confused. How can I tell which are the best sites?
- Yes, there are many sites and much information. Unfortunately, some of the information is not accurate. Some trustworthy sites with solid information about a gluten free diet are the two national organizations listed above and the two universities that have conducted extensive research regarding Celiac
- The University of Maryland Center for Celiac Research at www.celiaccenter.org,
- The University of Chicago Celiac Disease Center at www.celiacdisease.net.
The University of Chicago Celiac Disease Center’s Information Hotline is the only one of its kind in the nation. This information line provides expert help with questions regarding symptoms, testing, diagnosis and procedures. Feel free to call and ask questions related to the disease, its treatment or follow up care. Call Monday through Friday, from 9 a.m. to 5 p.m. central standard time at (773) 702-7593 with your questions.
The University of Chicago Gluten-Free Care Package Program is a basket of gluten-free resources, including a gluten-free food guide, support group information and food samples to instruct patients on the gluten-free diet. If you or your child has been diagnosed with Celiac disease through a biopsy in the past three months, call: (773) 702-7593 for your Gluten-Free Care Package. It will contain all the information you need to start the gluten-free diet so that you can spend your energy getting well instead of looking for information.
- There are also many websites and blogs with gluten free dining recommendations and gluten free recipes, etc.
4) How do I get started on a Gluten Free diet?
- Any fruit, any vegetable, any meat with which nothing is added is gluten free and absolutely safe. The clue is – when nothing is added.
- It’s best to start slow, with a few absolutely safe items at a time, and slowly adding more as you educate yourself to know what is safe. Listen to your body too. For some people, the following items may cause a problem as you begin the diet, but usually become safe over time: beans, dairy products, raw vegetables. As your intestines heal, then these food items are fine. Again, listen to your body, since not everyone responds the same. If your insurance covers the cost of a nutritionist or dietician, by all means use this benefit!
- Read labels. Especially watch for the words: wheat, rye, barley, oats. Be aware of the various varieties of wheat which include spelt, kamut, farro, durum, bulger, semolina, triticale, emmer, einkorn. Some of the more commonly listed hidden forms of gluten include: malt, modified food starch, textured vegetable protein, extenders and binders, hydrolyzed vegetable protein, stabilizers.
- The trick is to watch meats that have something added, like the turkey one buys for Thanksgiving that has already been basted. (sometimes the broth they baste it in contains gluten).
- It helps that as one of the 8 top allergens, the government requires wheat to be listed on the label.
Some companies list items as Gluten Free, but the government has not yet set a standard for this labeling, so there may be an unknown amount of gluten present. In that case, it’s a good idea to bypass the product, or you can call the Customer Service phone number on the label to inquire.
- Look up the guidelines for a gluten free diet from one of these trusted sources:
University of Chicago Celiac Disease Center at www.celiacdisease.net
University of Maryland Center for Celiac Research at www.celiaccenter.org
Gluten Intolerance Group at www.gluten.net
Celiac Sprue Association at www.csaceliacs.info
5) One has to be careful of cross-contamination. What does that mean?
Be careful that your food does not get crumbs or gluten from being on the same surfaces as gluten or using the same utensils. Even a tiny amount of gluten (1/64th of a tablespoon) can cause harm.
Because of the risks of cross-contamination we recommend getting another toaster that is dedicated gluten free and use a separate cutting board for gluten free food. Don’t stir your gluten free food on the stove with the same spoon your family member is using to stir their gluten containing soup or pasta.
Pots and pans used to cook sticky gluten-containing foods like pasta, pancakes, grilled cheese should be cleaned extra well to make sure no gluten residue remains after washing. It also pays to be careful with pasta strainers where over-cooked pasta pieces can sometimes get stick into the mesh.
Take care with butter, and jars of jelly, peanut butter, and mayonnaise. When your family member uses these to put on their bread, then the crumbs stay in the jar. It’s usually easier to have separate jars of each of these for the GF person in the family. The alternative is to train everyone to use a clean spoon every time they dip into these items, and to trust them to remember.
Also, avoid salad that has had croutons on it, even if the croutons have been removed, since the contact with the croutons have left tiny crumbs of gluten residue on the salad & can cause harm.
6) What are some unexpected problem areas with a gluten free diet?
- Medications. Check with pharmacist to make sure that they do not have wheat as a filler – in inactive ingredients.
- Lipsticks. Many companies offer gluten free lipsticks. Check with the manufacturer of your favorite brands.
- Salad Bars and buffet lines at restaurants and potluck suppers, etc, where persons go through a line & spoons can sometimes be used for adjacent dishes that may contain gluten.
- Well meaning relatives and friends who may not understand about the importance of reading all labels well or who may not understand the finer points of label reading for gluten. Also they may not be aware of all cross-contamination issues. If you are unsure of a food item, it is best to not eat it.
- Work situations, which includes bringing lunches to work or lunching out with co-workers. Bringing the lunches is quickly resolved. Going out to lunch requires some planning. Calling the restaurant ahead can give you an idea of whether you can trust them or not. One plan is to eat just before going, ordering a salad – emphasizing to the wait staff that you cannot have croutons. It’s always a good idea to carry a food bar with you, in case you don’t get a good meal, so you can eat it afterwards. Many gluten free persons have horror stories about adverse reactions or going hungry to avoid the gluten.
- Banquets and wedding receptions: Contact the caterer or banquet center ahead of time and give them enough time to plan ahead. Most caterers will have some experience serving gluten free meals. It’s best if you speak with the caterer yourself.
- Communion wafers. Check with your church, usually your pastor. The Catholic Church may not be accepting of offering wheat free wafers, but most Protestant churches are. Some churches are already offering gluten free wafers, while some churches are not there yet. It is best to photocopy some pages from books or the internet, explaining the issue and cross-contamination concerns. When persons from churches read the medical evidence, they are usually very willing to assist with an acceptable solution.
- Play dough. One of the main ingredients in play dough is wheat flour, therefore it is not usually gluten free. There are easy available recipes to make your own.
- Cosmetics, including make-up and lotions. A small percentage of people also get a rash called dermatitis herpetiformis, a chronic inflammatory disease that produces lesions that burn and itch intensely. It sometimes occurs in association with celiac, gluten sensitivity and allergy. If this is the case for you, then you may contact cosmetic manufacturers to check out other gluten free cosmetics.
7) My child has been diagnosed with Celiac and it sure is overwhelming. Is there any help for us?
- Donna Korn is the parent of a child with celiac and she has founded “R.O.C.K.” Raising Our Celiac Kids, a support group for parents, families and friends of kids with Celiac disease or gluten intolerance There is a local support group in Charlotte. You can reach Donna Korn at firstname.lastname@example.org. She is the author of many books on this topic for children and for parents. This group addresses many of the special needs of children, like menu ideas, school lunches, holiday activities, overnights with friends, summer camps, babysitting issues, teenagers’ peer pressure, educating teachers and daycare staff, etc.
- The Celiac Sprue Association has a section on their website www.csaceliacs.info regarding children. This includes sample letters to school teachers, principals, cafeteria staff, etc.
- The Gluten Intolerance Group has:
- A Celiac Kids Club Magazine
- A program for teen-agers who need to be gluten free called TAGS
- Gluten Free Kids Summer Camps. The next GIG Kids Camp East is at Camp Kanata, Wake Forest, North Carolina. Camp Kanata Registration – www.campkanata.org August 5th-11th, 2012
- The University of Chicago Celiac Disease Center’s Information Hotline is open Monday through Friday, from 9 a.m. to 5 p.m. central standard time at (773) 702-7593, to answer questions. If your child has been biopsy diagnosed within the past three months, you may also request their gluten free care package with a gluten free food guide, support group information, food samples, and other resources.