PRESCRIPTION: Gluten-Free Lifestyle

Right now you probably feel like the only person in the world who has a strange sounding illness called "celiac disease." Actually, however, there are thousands of "celiacs" (that's what we call ourselves) out there who know what you're going through. So, cheer up. You're not alone. We've been right where you've been and understand the confusion you feel. We know the questions you're asking yourself like, What am I going to eat?

The good news is, you don't have a dread disease that requires continuous medication. But your life is never going to be quite the same. It's going to get better. You'll be just as normal and healthy as you want to be. It's all up to you.

If you’ve recently received your diagnosis, you may not be completely clear on what celiac disease is all about. Celiac Disease ("CD") is a chronic digestive disorder in which the surface of the small intestine is damaged. The damage is caused by eating grain products containing a protein called gluten. Gluten is found in the grains wheat, barley, rye and perhaps regular oats.

Celiac Disease has also been called gluten intolerance, gluten sensitive enteropathy, non-tropical sprue, celiac-sprue, or Coeliac Disease, but all are one condition. A typical case of celiac disease probably does not exist. Each patient exhibits a variable combination of symptoms of varying severity. In children, the symptoms may become apparent three to five months after first consuming gluten-containing foods. Some babies with severe "colic" may in reality have celiac disease. Children with celiac disease may gradually become irritable or listless and have abnormal bloating and/or develop a large abdomen. The stools may become abnormal, perhaps large, pale and offensive, or loose with diarrhea. The child may also vomit, possibly projectile in nature. Most celiacs lose weight or fail to grow normally. Some children become very ill with diarrhea and dehydration or, conversely, constipation.

In adolescents the symptoms of celiac disease may be non-specific consisting of poor appetite, poor growth and anemia. For these reasons the disease may be more difficult to diagnose. It is possible for adolescents to have a period of time where no outward symptoms are manifested even though a previous diagnosis of celiac disease resulted in a good response to the gluten-free diet. Although some people may have a "latency period," damage is still being done in the intestines. No one ever "outgrows" celiac disease .

Adult celiacs may exhibit such signs as anemia, weight loss, chronic diarrhea or large, malformed multiple bowel movements, abdominal cramping and bloating, intestinal gas, abdominal distention, muscle wasting or weakness, and/or lack of energy. The most common symptoms are weight loss and diarrhea, or constipation. Adult symptoms may appear after a severe bout of the flu, an operation, pregnancy, menopause or other stress-related event.

If not diagnosed early, malabsorption may lead to some of the following situations: dehydration, electrolyte depletion, growth retardation, swelling, anemia, peripheral neuropathy (numbness and tingling in the fingers and toes), central nervous system and spinal cord lesions (affects primarily the cerebellum and balance), or personality changes (especially common in children). Children may become irritable, cranky and have difficulties with mental alertness, concentration and/or memory function. The same processes may occur in adults.

All of these clinical problems are due to the inability of the small intestine to absorb nutrients normally. The variation in the combination of symptoms is thought to be related to the variable amount of intestinal damage and the length of time nutrient absorption has been abnormal.

Perhaps you learned about the connection to CD when your dermatologist diagnosed you with dermatitis herpetiformis (DH). It is thought that dermatitis herpetiformis and celiac disease are one and the same disease but with different manifestations and different stages and sensitivities to gluten.

Typically, DH can be characterized as an intensely itchy skin eruption distinguished by blistering outbreaks usually on the elbows, knees and feet. The symptoms of intense burning, stinging and itching cannot be overemphasized. It is common for DH lesions to be symmetrically distributed on the elbows, knees, buttocks, scalp, neck, shoulders and lower back. The face and facial hairline are occasionally affected. And rarely, the lesions occur within the mouth.

Seventy-five to ninety percent of patients with DH, as well as many of their relatives, have none of the classic symptoms of celiac disease. However, research shows that 11.2% of first-degree relatives indeed have celiac disease, and 1/3 of these are asymptomatic.

Maybe you have noticed that in addition to having problems with grains you also don’t feel well after eating or drinking dairy products.

Lactose intolerance occurs frequently in celiac-sprue in the active stages of the disease. The lactase enzymes necessary to digest lactose are produced on the tips of the intestinal villi. When the villi are damaged, there is a decrease in the ability to generate lactase enzymes. Therefore, newly-diagnosed celiacs are encouraged to limit their intake of milk and milk products, as well as foods containing milk and milk products as an ingredient, until their gut is well on its way to recovery.

Although we recommend newly-diagnosed celiacs abstain from dairy for 2-4 months, many celiacs recover their ability to digest milk products as the gut heals.

The following are thought to be linked to Celiac Disease and Dermatitis Herpetiformis:

Type I Diabetes Mellitus - high blood sugar due lack of insulin production by the pancreas.

Autoimmune Chronic Active Hepatitis - inflammation of the liver from autoimmune factors.

Myasthenia Gravis - a muscular dystrophy disease that causes muscle weakness.

Not being able to eat grains seems downright un-American. Even the patriotic song "America the Beautiful" refers to "the amber waves of grain."

Grains have been a dietary staple in the diets of civilized society for centuries. They are so prevalent in our modern culture that it is difficult to get away from them. Wheat, at least, seems to be everywhere. You'll be surprised to learn just how many places grains can turn up. They sneak their way into foods that seem completely harmless for celiacs.

You have to read labels, check menus, call restaurants, question cooks and do anything it takes to make double-sure you're not eating any of the offending grain products.

It may take a while to get used to your new lifestyle. And because you will not be eating the same as everybody else, you may be perceived as "different."

"She's pretty strange, some may say, "She can't eat anything!" Or, "Don't invite him to lunch with the rest of the guys; he can only eat at a few restaurants."

Being different is very difficult for some, yet comes easily to others. But you don't have to be an "oddball." By preparing your own meals at home, "brown bagging" at work, and calling ahead when you go out to restaurants, you can be a part of the group and fit in just like everyone else. But it will take a bit more work than before.

Recovering from celiac disease is like finding your way out of a forest. Think of your diagnosis as discovering a map in the woods. And imagine that attached to the map is a note that says, "This map shows the path out of the woods. You must walk out yourself, step by step. Stay on the path and you will find your way back to health." The map shows the following steps:

Step 1: Eliminate obvious sources of gluten from your diet. This would include any foods containing the grains wheat, rye, barley or oats. Many alcoholic beverages such as beer are made from grains. This step is going to mean big changes in your diet and lifestyle. It's not easy but it is necessary. You can do it!

Step 2: Analyze all the foods you normally eat to determine where gluten-free substitutions may be made. It is important for you to find suitable substitutions for your favorite foods. There are numerous commercial sources for gluten-free bread, pasta, flour, cereal, etc., which allow you to continue eating many of the food items you have come to enjoy.

Step 3: Start slowly using fresh food. Choose plain meats, poultry, fish, vegetables and fruits. Add in new foods one at a time every 2 or 3 days.

Step 4: Begin trying new foods that are safe for those with celiac disease. Adding some variety to your menu will give you a lift! If you haven't been a big vegetable eater, try some veggies you've never had before. Maybe new types of fruit would bring a new dimension to your diet. Fortunately, there are a number of gluten-free cookbooks available.

Step 4: Keep a food diary. Write down everything you eat with brand names and your body’s reactions.

Step 5: Become a label reader. Reading ingredient lists on food labels can be a challenge. You will probably be surprised to learn how many different ingredients some packaged food items contain. Normally labels do not spell gluten out for you. You will find that there are many ingredients that you cannot identify. When you shop, make a list of unknown ingredients and check them out with your local support group. Also, don't hesitate to call or write manufacturers to determine whether a product is gluten-free. Most food products contain a toll-free customer service number.

Step 6: Go the extra mile to check out items you might never consider. Think of any product that comes into contact with your body. A variety of other non-food items can contain gluten, such as toothpaste, mouthwash, chewing gum, breath mints, lip stick, suntan lotion and postage stamp/envelope glue (although there are envelopes & stamps that are self stick.) Also, keep an eye peeled for cross-contamination. Butter dishes and jelly jars are easy places for crumbs from toast and pastries to wind up. Cross-contamination can also occur when you put gluten-free bread in the family toaster (a toaster oven that can be easily cleaned is better), or when you fry foods coating with gluten-free flour in the same grease used to fry other grain-based products. No "double-dipping!"

The first thing you will want to do after eliminating all sources of gluten from your diet, of course, is join the National Celiac Association. The NCA will be your source of continuing information and assistance as you adapt to your new lifestyle.

THE COMPLETE GUIDE TO LIVING GLUTEN-FREE (which is $19.95) provides 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, entertaining at home and more.

NCA’s Practices:

We educate, advocate and raise awareness of celiac disease and gluten intolerance.
We foster a sense of community, belonging and camaraderie.
We keep a close affiliation with a core of expert gastroenterologists and nutritionists.
We provide empowerment to live with a chronic disease and share a positive outlook as ambassadors of the disease.
- An e-newsletter, NCA News, with items too important to wait, goes out monthly
We offer a periodic newsletter GLUTEN-FREE NATION.
We offer membership, the dues of which support the celiac and gluten free community.

►National Celiac Association, 20 Pickering Street, Needham, MA 02492;

Boston area: 617-262-5422

Toll Free: 1-888-4-CELIAC

Website: https://nationalceliac.org/contact/

E-mail: info@nationalceliac.org

Your first year of membership is $35
Your membership will automatically renew annually ($30) until cancelled.
Your supportive membership helps our non-profit organization educate, advocate for, and provide resources to the celiac disease and gluten free community.

Support groups usually schedule meetings on a routine basis, depending on the group’s wishes. The meetings are tremendous sources of information. A typical meeting might involve a guest speaker or video presentation, a discussion of sources for purchasing gluten-free products, distribution of handout literature, and information about which local restaurants or commercial products are safe for celiacs.

In areas where there is no support group, there are persons who serve as Chapter leaders to help you with this same information.

Support groups and resource persons will make the process of adjustment go more quickly.

See the details about the Houston Celiac Support Group in another part of this web page.

With all the talk of staying healthy by maintaining a diet that is low in fat, sugar, sodium, etc., it is possible that some might think of the celiac meal plan as a "low-gluten" diet. This is absolutely not the case! There is no way to get well by simply "cutting back" on food containing gluten.

The critical reason for banning gluten for life is that every small particle does some damage even though you may not be aware of it at the time. Case history data appears to prove that later in life celiacs run a high risk of severe relapse or may develop new or related health problems. The message is very clear: avoid gluten.

The importance of removing every iota of gluten from your diet cannot be stressed enough. If there is any question in your mind about this, please refer to the sections entitled, "Risk of Lymphoma", "Risks of Ingesting Gluten" and "Lack of Symptoms."

In the beginning, you will make inadvertent mistakes. Try to trace back what might have caused the upset, write it down in your food diary, and vow to avoid that product. Just get back to your GF routine!

Once you have seen a dietitian with expertise in celiac disease, you are responsible for your own dietary management. The support group can answer specific questions concerning safe food products, but concerns about overall dietary health should be directed to your physician and/or registered dietitian.

You will eventually come to consider yourself a celiac disease expert. That is why it is important to fully educate yourself about Celiac Disease. You will become quite experienced in what is acceptable and what is not. If you can't determine whether a product is gluten-free, write directly to the manufacturer or call the toll-free number listed on the package. If you explain your dietary problem and ask for specific information, they are generally willing to help.

Cheer up! You don't have to live on bananas and boiled rice. You will be pleased to learn that there are actually plenty of food choices available for celiacs, so don't worry about going hungry.

First off, you can eat any food that doesn't contain wheat, barley, rye or oats. This includes meat, fish, salads, vegetables and fruit. Just make sure there is no grain involved in the preparation or serving of the food, for instance, breading or flour on fish, meat or fried vegetables; cracker crumbs in casseroles; or croutons on salads. Many times the issue is just a matter of choosing an alternative brand.

Meats in restaurants might be marinated questionable ingredients, for example, soy sauce.

Beyond that, there are numerous substitutes for all of the things you can't eat. A number of companies (Chrunchmaster, Pamela's Products, Canyon Bakehouse, Little Northern Bakehouse, Annie’s, Nameste, Bob’s Red Mill, King Arthur Baking Co., Shar, and many others) make gluten free breads, flours, pizza crusts, macaroni, spaghetti noodles, cookies, pancake mixes, etc. Many of these items are available in health food stores. If you can't find them locally, or want to ensure freshness, you can order the products by mail order.

People diagnosed with Celiac Disease, Gluten Intolerance and Gluten Sensitivity should avoid all gluten (wheat, barley, rye and perhaps oats) forever. Because the new labeling law has been in effect for over a year, we anticipate that all food labels have been changed.

You will now find label reading easier for wheat and wheat derivatives. In the past, such nebulous terms as 'modified food starch, texturized vegetable protein, hydrolyzed plant protein, emulsifiers, stabilizers, natural flavors, etc. could mean hidden gluten. Now we don't have to worry about these words if the label does not say the product contains wheat. Wheat is our biggest offender.

Words that denote WHEAT: Wheat, and any derivatives, most soy sauces, wheat bran, bread crumbs, bulgur, cereal extract, couscous, cracker meal, durum, durum flour, enriched flour, farina, gluten, graham flour, high gluten flour, high protein flour, kamut, triticale, cereal extract, matzo, semolina, spelt, triticale, soft wheat flour, vital gluten, wheat (bran, germ, gluten, malt, starch), whole wheat berries, whole wheat flour, barley grass, orzo (rice-shaped pasta), matzo meal. Until the FDA officially defines the term "gluten" by 2008, you need to look at all food labels for wheat, barley, rye and oats and avoid.

OATS: (All commercial oats are contaminated with gluten.) There are some pure sources in the U.S.: www.glutenfreeoats.com , and Gifts of Nature ( www.giftsofnature.net ). These are "certified" gluten free. Wait to try these pure oats until you are comfortable with your gluten-free diet, at least six months. Add this source of fiber gradually into your meal planning. Be advised that not all celiacs can tolerate even the pure oats.

If a product is wheat free, is it also GLUTEN FREE? Answer: Not necessarily. Other grains that do contain gluten may be among the ingredients.

You, like many celiacs, might have great success at making your own breads. Bread machines are available from several companies, such as Regal, Toastmaster, Zojirushi and Welbilt. Be sure to purchase a heavy-duty model that can be programmed for ONE rising cycle.

Substitutes for wheat flour, such as rice flour with bean flour, potato starch, tapioca starch and/or sorghum flour make very good yeast breads, although they taste different from wheat products and are not as easy to bake. Using a mixture of gluten-free flours plus xanthan gum for a binding agent, it is possible to make quite tasty gluten-free breads. Gluten-free breads do best with only one rising. Try to choose a model that can be programmed for one rising cycle, if possible. You have to get used to the different taste of gluten-free breads; they are best eaten warmed up in the microwave or toasted.

Some health food stores advertise certain flours to be used as substitutes for wheat flour, but they either have wheat in them or are very questionable for celiacs. The flours to be avoided are wheat, barley, rye, oats, triticale, spelt, and kamut. Wait to use millet, amaranth, and buckwheat because they could be contaminated with wheat, but they do not inherently contain gluten.

A consumer specialist is available to help celiacs with minor recipe problems or who need help in adapting recipes to bread machines. This service is provided jointly by Red Star Yeast and Welbilt Bread Machines. Call 1-800 4-CELIAC (1-800-423-5422.)

Another option is to grind your own grains with a grain mill. This allows you to make your own flour from whole buckwheat (not a form of wheat, but still causes trouble for some celiacs), whole rice or tapioca. If you are a pasta lover, you will be happy to learn that pasta machines are available from companies such as Pasta Express, Magic Mill and Popeil.

Original Gluten-Free Flour Mix : 2 parts white rice flour, 2/3 part potato starch flour and 1/3 part tapioca flour.

Bread Flour Mix : 1 part white rice flour, 1 part brown rice flour, 2/3 part potato starch flour and 1/3 part tapioca flour.

Try to help your celiac family members feel as normal as possible. It is important that they fit in. One way to do that is to cook gluten-free for the whole family.

When everyone is eating basically the same foods, the one on the GF diet is not singled out. It's easier to prepare one meal for everyone, rather than to cook special foods for the dieter in addition to what everybody else is eating. Exceptions might be special gluten-free breads, cookies and pastries, which are more costly than ordinary foods. Your celiac family member may be the only one to eat these baked goods.

If you have a celiac child, it makes him or her feel better to be eating the foods that the rest of the family is enjoying. As for desserts, wouldn't it be healthier for the whole family to enjoy fruits and homemade custards or puddings rather than rich pastries?

If you are an adult GF dieter, the lunch box solution is rather simple. Nowadays, with so many people on low fat diets, low carbohydrate diets, low salt diets, etc., it is a common sight to see fellow workers pull out thermos jugs of soup, or cans of tuna (packed in water, not vegetable broth), containers of cottage cheese or yogurt (unless you are lactose intolerant), fresh fruit, homemade salads or other "health foods."

You will find it easy to prepare lunches containing such items as plain, cold leftover meat (be careful of "luncheon" or "deli" sliced meat, unless checked out; Boar’s Head brand is GF), hard-boiled eggs, cheese, celery, carrots, fruit, or a small bag of chips. This kind of dieting requires no special baking or food preparation.

For snacks, you can fill your desk drawer with an assortment of potato or corn snacks, raisins, dates or rice cakes.

Children are more likely than adults to have lunch box problems. You may be lucky enough to convince your kids that their special lunch-time treats are just great, but they may feel "different" and want something more like what everybody else is eating. This may force you into the gluten-free bread baking routine or on a search of local health food stores for gluten-free bread so you can make sandwiches.

If you have a chicken drumstick nut on your hands, great! Cook up a two-week supply. Individually wrap and freeze them, and pull one out each morning for the lunch box. Pack it along with a variety of other goodies, and you have a happy brown-bagger.

Keep the pantry well supplied with snack-size packages of gluten-free chips, nuts, popcorn or gluten-free, sugared cereal (this makes a nice dessert). These items, along with raw vegetables, fresh fruit, candy and home-made baked goods are convenient for adding to lunches. Another handy item is individually wrapped cheese slices or triangles. (Be careful of most processed cheese.) Cheese is a good source of protein at lunch time. Dried beef sticks may also be popular and convenient for lunches. (Check out processed deli meats like bologna or sausage with each manufacturer; these may contain cereal fillers.) Keep a youngster surprised with a variety of interesting tidbits and he'll be happier. If the school has a cafeteria, make sure your child knows enough about the diet so he can select carefully from the menu. Many schools publish the menu in advance so that the child will know if he should bring a lunch or buy it there.

With a very young child, it may be helpful to speak to the school nurse and explain the dietary requirements. She should be able to help in finding out what foods the cafeteria uses in preparing lunch, and in assuring that your child stays with his diet even though he is away from home. The teacher, of course, should also be informed so that she can cooperate with the family in alerting them about special birthday parties where a gluten-free cupcake, etc. can be supplied for the dieter.

You will find that another challenge is eating in restaurants. Even if you order a menu selection that appears to be completely gluten-free, like a salad, steak and baked potato, there is no guarantee that it is. It's a simple matter to order the salad without croutons, and to refrain from eating bread and pie crust. However, the safest looking thing on the plate, the steak, could be a gluten-filled land mine. (Be aware that you cannot eat the filling on pies because the wheat crust has had contact with a knife.)

Many restaurants use a meat marinade that contains gluten in the vinegar. Some chains receive their marinated meat in pre-packed, vacuum-sealed bags. So, you can see that eating out requires more investigation than simply reading the menu.

It is important to call ahead to check for menu items you can eat. Speak with the manager and ask if they would be willing to prepare a non-marinated meat serving. When you arrive, explain the situation to the wait staff. (Since they won't understand what celiac disease is, simply tell them you're allergic to grain products in any form.) Don't hesitate to ask about ingredients in menu items or to request substitutions.

Order salads without croutons. Don't accept a salad that has to have croutons removed from it; ask for a fresh one. If your burger arrives with a bun, ask for a freshly cooked patty rather than allowing the bun to be removed. The crumbs are enough to cause a reaction. And even if you have no reaction, remember that minute amounts of gluten can still cause intestinal problems. Check to see if French fries are fried in the same fryer with breaded foods, and if so avoid them.

It pays to go all out with charm and gratitude with both wait staff and managers. Make them feel truly appreciated for helping. Then, the next time you go in, they will remember your kind treatment and attend to your needs without a discussion.

If you are invited to dine with a friend, ask what will be served. If the menu isn't "celiac friendly," explain that you are on a special or restricted diet. Make a request to have yours served without gravy, for instance. If lasagna is being served, you could bring your own piece of chicken or arrive after dinner because you are "allergic" to lasagna. Or ask permission to bring a favorite dish, then bring along a large, attractive platter of something gluten-free and serve your plate from it. Anything is better than sitting with an empty plate, which can be offensive to a host/hostess.

With proper planning and preparation, you can enjoy traveling without worrying about ingesting gluten. There are plenty of portable, lightweight, non-refrigerated foods that fit easily into a purse, briefcase or carry-on bag. Pick from the following when packing for your next business or pleasure trip: nuts, raisins, dates, figs, gluten-free granola bars, gluten-free pretzels, beef or venison jerky, fruit roll-ups, rice cakes, corn chips, instant cream of rice, grits, gluten-free cookies, bean paste and hard candy.

Outdoor enthusiasts need not give up their hobby. In addition to these portable foods, you may also choose from this lineup when planning backpacking and camping trips: Carnation Instant Breakfasts, Lipton Cup-a-Soups, Dole California Style and Hawaiian Style trail mixes, gluten-free breads for sandwiches, dried fruits, gluten-free pancake mixes, instant potatoes and canned vegetables. Also available are 8-oz. military style MREs in foil packets at $4 each from My Own Meals, Inc. at 847-948-1118 or FAX- 847-948-0468.

Continual cheating on the gluten-free diet or accidental ingesting of gluten from hidden sources may cause:

The inability of some intestinal villi to fully regenerate and allow complete nutrient absorption.

Any constant irritation to a weakened area can promote a cancer in your body. That is why it is so important for you to allow your gut to completely heal, and to ensure that it stays that way.

It appears that people with celiac disease and dermatitis herpetiformis who are consuming gluten on a regular basis, whether through cheating on the diet or through hidden sources, are at an increased risk of developing intestinal lymphoma (a type of cancer). However, when one is on a strict diet and the gut heals completely, the risk of cancer is reduced to about that of the general population.

It has been proven that even when there are no symptoms, small amounts of gluten, usually from hidden sources, can be taking their toll on a celiac's intestinal lining. The amount of gluten that sneaks in may be just under the threshold for causing a reaction, yet still be enough to effect gradual but certain damage to the lining of the intestinal tract. When there is unhealed damage to the intestinal lining, there is a risk of developing more serious health conditions.

Several blood tests are available to screen for celiac disease. Together, the tests -- the IgA and IgG anti-gliadin antibody blood test, the IgA anti-endomysial antibody blood test (EMA), and the issue transglutaminase (tTG) -- are most effective at making an initial diagnosis. The EMA and tTG tests are the most specific and sensitive for celiac disease, over 95% accurate. The full screening picture is made with these 4 tests, plus serum IgA (to test whether the person is IgA deficient). The IgA and IgG tests can be administered to check whether celiac patients on a gluten-free diet are ingesting gluten from hidden sources.

The blood tests are used first to point the way toward celiac disease or to rule it out. The “gold standard” of diagnosis is the endoscope procedure where a gastroenterologist takes multiple tissue samples (8-20) which he/she, with a pathologist, analyzes under a microscope. The last step in diagnosis is good blood test results while on a gluten-free diet.

First-degree relatives of persons with CD or DH (brothers/sisters/ parents/children) may have these tests run to see if they have celiac disease without any symptoms (known as "silent sprue"). Although family members may be symptom free, serious permanent damage can occur in the intestinal tract, which can cause severe health problems later in life.

There are about five or more specialty labs throughout the country that process the tests, and they suggest that the physician or lab contact them in advance for directions on how to draw the blood and how to mail it to them properly.

It may take you a while to get used to your new lifestyle. And because you will not be eating the same as everybody else, you may be perceived as "different". By preparing your own meals, "brown bagging" at work, and calling ahead when you go to restaurants, you can be a part of the group and fit in just like everybody else. It will just take a little more work than before.

We also lucky that there are many food vendors who have gluten-free lines of flours, mixes and food products for celiacs. Thus, you can add variety to your diet. More information is available from the Houston chapter and NCA.

Support groups play the important role of helping identify what foods are free from gluten, how to adjust recipes, and give updates on where to locate foods that are free from the offending grains. These resource groups provide continuing education on CD, encouragement, and practical help in coping with this often frustrating condition in order to contribute to your continued health and well-being.