A diagnosis that can be upsetting.

Many people worry about the dietary limitations and restrictions. However, there is no reason for concern. Even though it means following certain guidelines, living with celiac disease can be lived with intensity and enjoyment. Individuals with celiac disease need not make any compromises in quality of life!

The diagnosis of celiac disease is the start of a series of major changes for the better. First of all, simply through the adoption of a gluten-free diet and without the aid of any drug therapy, patients will experience the gradual resolution of their symptoms, even if these have lasted for many years. The return of health manifests itself not only in the disappearance of distressing problems such as weight loss or abdominal bloating, but also in an overall upswing in psychological and physical well-being, particularly a marked improvement of mood, ability to concentrate, and muscle tone. To realize these benefits, individuals with celiac disease have to learn to live with a treatment that feels unfamiliar at first. Eliminating bread and pasta – foods that have assumed a symbolic value in many societies – from one’s diet is quite an adjustment. Nevertheless, the negative impact of this dietary restriction can be countered with imagination and knowledge. With imagination, one can discover a whole world of foods that are permitted in the “celiac diet” – both those foods that are naturally gluten- free and those that the specialty food industry is making available in greater and greater quantities. And with knowledge, to which this brochure intends to contribute, one can learn to manage more easily the small problems that can confront celiacs in their everyday lives. 

_ Prof Carlo Catassi Department of Maternal and Children’s Sciences, Università Politecnica delle Marche, Italy Center For Celiac Research, University of Maryland, Baltimore, USA

Celiac disease is a permanent dietary intolerance to gluten.

Gluten is a protein that is present in wheat, emmer, kamut, spelt, rye, triticale and barley. In a genetically predisposed individual of any age, the ingestion of even small quantities of foods containing gluten triggers an immune response in the small intestine, causing chronic inflammation. This causes the eventual disappearance of the intestinal villi resulting in a wide range of symptoms that vary from person to person. In a healthy individual, the intestinal wall is covered with villi, the function of which is to increase the surface area of the intestine to aid the absorption of nutrients. However, in celiac disease these villi are greatly reduced and the mucous lining of the intestine is damaged. Because of the decrease in surface area, the absorption of nutrients such as protein, fats, carbohydrates, vitamins and minerals is inhibited, leading to malnutrition and loss of function. Gluten intolerance is one of the most common conditions worldwide. It affects approximately one out of every 100 people in North America. A similar frequency has been reported in developing regions, such as North Africa, the Middle East and India, where large quantities of wheat are consumed.

Gluten is a protein substance that is present in certain cereals, such as wheat, emmer, kamut, spelt, rye, triticale and barley. The main function of gluten is to act as a binding agent, which gives baked goods their characteristic structure and texture.

Celiac disease has a complex pathology that is caused by a variety of hereditary and environmental factors. 

Genetic factors 
Celiac disease has a genetic component, demonstrated by the fact that it tends to run in families. Family members of those with celiac disease are approximately ten times more likely than the general population to develop the disease. However, not all of the numerous genes that contribute to a hereditary predisposition are presently known. The best-understood factors belong to the human leukocyte antigen (HLA). The HLA-DQ2 and/or DQ8 genes are present in the vast majority (at least 95 per cent) of individuals with celiac disease. The presence of HLA-DQ2/DQ8 alone, however, does not necessarily lead to a development of the illness, as these same genes are found in a high percentage of the general population (approximately 20-30%). 

Environmental factors 
The environmental component of the celiac disease is an exposure to gluten in the diet.

The symptoms of celiac disease can vary. Some people may feel no symptoms at all while others may have multiple and severe problems. 

Celiac disease can affect many different organs and systems in the body, resulting in a wide variety of symptoms that vary from person to person. The most common symptoms are diarrhea or constipation, weight loss, fatigue, abdominal bloating and pain, vomiting, and, in children, failure to grow. Other symptoms such as anemia, osteoporosis, and vitamin or mineral deficiencies may also occur. 
The various presentations of the celiac disease can be divided into typical cases with gastrointestinal symptoms (these cases are in the minority today) and the more frequent atypical cases, which are characterized by vague symptoms such as colitis (the so-called “irritable bowel”) or an iron deficiency that is resistant to iron supplementation. There are also the silent forms, which are occasionally diagnosed in individuals at risk (family members of those with celiac disease, for example, or individuals with diabetes who are detected through blood test screening) despite the absence of obvious symptoms. In such cases, the apparent lack of symptoms is misleading; after treatment begins, a marked improvement in overall well-being is noted. Finally, the condition is suspected in some individuals because they have a non-intestinal complaint that may be associated with celiac disease, such as a skin condition called dermatitis herpetiformis, mouth ulcers, diabetes, osteoporosis, infertility, thyroid disease, allergies, food intolerance, or a neurological condition. In some individuals – fortunately very rare – cases, untreated celiac disease can result in severe complications such as small bowel ulcers and intestinal cancer.

There are four presentations of celiac disease.

Typical celiac disease 
The typical forms of celiac disease begins early, generally within a few months of the start of weaning, with symptoms of intestinal malabsorption, chronic diarrhea, growth failure, lack of appetite, vomiting, and abdominal distension (“bloated belly”). 

Atypical celiac disease 
The atypical forms of celiac disease presents late with predominantly non-gastrointestinal symptoms, such as iron-deficiency anemia, elevated liver enzymes, dental enamel defects, dermatitis herpetiformis, or short stature in schoolaged children. 

Silent celiac disease 
The silent forms of celiac disease are diagnosed by chance in apparently healthy individuals as the result of screening. Silent celiac disease presents with positive laboratory antibodies and positive intestinal biopsies but have no apparent symptoms. Many cases are silent only in appearance; after beginning treatment, individuals register a marked improvement in psychological and physical wellbeing. 

Latent celiac disease 
Cases are defined latent or potential if they present positive laboratory markers but normal intestinal biopsies. Individuals with latent celiac disease, if left on an unrestricted diet, may in time develop a full-blown intestinal lesion. An increased incidence of celiac disease, often in a silent form, is found in those with autoimmune diseases (especially type 1 diabetes and thyroid disease), other syndromes (Down’s syndrome, Turner’s syndrome and Williams syndrome), or a deficiency of serum immunoglobulin A (IgA).

In the presence of symptoms that can be associated with celiac disease, an initial diagnosis of gluten intolerance can often be obtained on the basis of blood tests alone. A definitive diagnosis, however, can be made only on the basis of an intestinal biopsy. In this procedure, a tissue sample from the small intestine is collected and then subjected to a histological exam, which can reveal possible atrophy of the intestinal villi. In individuals suspected of having celiac disease, there are several tools used to make the diagnosis. These include blood tests for measuring antibody, intestinal biopsy and genetic testing. A definitive diagnosis, however, can be made only on the basis of an intestinal biopsy while on a gluten containing diet. In this procedure, a tissue sample from the small intestine is collected and then viewed under a microscope, which can reveal possible damage to the intestinal villi. 

Blood tests 
Certain blood tests are useful in screening for celiac disease. Primary among these is the highly reliable and automated test for antitransglutaminase antibodies (anti- tTG). An equally effective, though less widespread, test is for anti- endomysial antibodies (EMA). Tests for antigliadin antibodies (AGA) are particularly helpful in screening children under the age of three. These tests for celiac disease are dependent on the body’s ability to make serum IgA, therefore an additional test for serum IgA should be done. 

Intestinal biopsy 
In the event that the blood tests are positive, the next step is to perform an intestinal biopsy, a procedure in which tissue samples from the small intestine are taken by means of an endoscope and then analyzed under a microscope. If the characteristic alterations in the intestinal lining (blunting of the villi and an increase in intraepithelial lymphocytes) are found, a definitive diagnosis of celiac disease can be made. 

Genetic tests 
In some cases, the genetic testing may be helpful in ruling out celiac disease but not for diagnosing the disease. The HLA-DQ2 and/or DQ8 genes are present in the vast majority (at least 95 per cent) of people with celiac disease. The presence of HLA-DQ2/DQ8 alone, however, does not necessarily lead to a development of the disease, as these same genes are found in a high percentage of healthy individuals (20 to 30 per cent of the general population).

A strict gluten-free diet is the only effective therapy.

A life-long, strict gluten-free diet is currently the only effective treatment for celiac disease. All foods containing wheat (including lesser known varieties - emmer, einkorn, kamut, spelt), rye and barley must be eliminated. It is crucial to keep in mind that even small quantities of gluten can cause damage. Careful attention must be paid to the ingredients of common foods on the market, since traces of gluten may be present in various products. It is essential to consult with a dietitian with expertise in celiac disease for a nutritional assessment and education about the gluten-free diet. There are additional resources on celiac disease and the gluten-free diet available on pages 62-63.

The first effect is a reduction or elimination of clinical symptoms. 

Eliminating gluten causes clinical symptoms to disappear, the normalization of antibody tests and the restoration of the normal structure of the intestinal lining. The length of time for recovery varies from person to person. In individuals with typical symptoms the effects of the diet are astonishing. There is a marked improvement in mood and appetite, followed by the reduction of gastrointestinal symptoms and, in children, resumption of growth. For individuals with atypical presentations or those diagnosed later in life, the recovery process may take longer. Following a strict life-long gluten- free diet minimizes the risk of long-term complications such as osteoporosis, cancer of the gut, and other associated autoimmune disorders (e.g., type 1 diabetes, thyroid disease).

The advantages of a gluten-free diet:
_the intestine returns to normal
_nutrients are absorbed and utilized by the individual
_lost weight is regained
_psychological and physical wellbeing is restored

The gluten-free diet may be challenging in the beginning. The good news is that there are many foods that are naturally gluten-free such as meats, dairy products, fruits and vegetables, even rice, corn and potatoes. Many of your favorite foods including breads, pasta, pizza, cookies, baking flours and mixes are available in a gluten-free form.

There is no universal definition for the term gluten-free. Various countries have different gluten-free labeling regulations, acceptable levels of gluten if any, ingredients allowed, and terms and symbols that can be used on products. 

Codex 
The World Health Organization Codex Alimentarius Commission adopted the Draft Revised Codex Standard for Gluten-Free Food in July 2008. The draft states that a food labeled as gluten-free may not contain more than 20 ppm gluten. 

USA 
The Food Allergen Labeling Consumer Protection Act (FALCPA) became law in 2006. The top eight allergens which includes wheat (but does not include barley or rye) must be listed on all product labels by their common or usual name on all foods regulated by the FDA. The FDA is also required to issue a rule to define and permit the use of the term gluten-free on the food label. The final ruling is to be enacted by fall 2010. The use of the term gluten-free on package labels will be voluntary. It should be noted that this does not include products regulated by the USDA (e.g., meat, fish and poultry).

Canada
There is a specific labeling regulation for the term gluten-free. This claim is monitored by using a sensitive test called ELISA with a limitation of 20 ppm. This level is used as guidance for the enforcement action. Canada does not have any specific symbol that is used to denote the gluten-free claim on the package label. Health Canada has also has a proposed regulation that would require all the top allergens and gluten sources to be included on the product label by their common or usual name.

Safe foods or foods without gluten
Numerous naturally gluten-free foods exist that may be consumed without reservation. These include plain meat, poultry, fish, eggs, nuts, legumes, milk, yogurt, cheese, fruits, vegetables, as well as different grains and starches such as amaranth, buckwheat, corn, flax, millet, quinoa, rice, sorghum and teff. 

Caution foods 
Certain foods may be consumed only after one has made sure that they are free of gluten. Some processed and packaged foods, along with certain ingredients may contain gluten (e.g., soups, sauces including some brands of soy sauce, salad dressings, deli meats, frozen burgers (beef, poultry or fish), flavored teas, candies and chocolates. 

Foods not allowed
Foods that must be eliminated completely include all those containing derivatives of wheat, emmer, kamut, spelt, rye, barley. Regular commercial oats are not recommended as they are often contaminated with wheat, rye or barley.

Oats as a grain do not contain gluten. However, many commercial oat products on the market are cross-contaminated with wheat, rye or barley. There are some companies in North America and Canada now producing pure, uncontaminated oats. Research has revealed that most people with celiac disease can tolerate these oats but it is essential that introduction of pure, uncontaminated oats be done under the guidance of health care professionals.

The gluten-free diet is healthy, tasty and balanced. 

For the well-being of the whole body, it is advisable to eat a variety of foods, drink plenty of water, and use fats, salt, sweets, and alcohol in moderation. A varied diet is important for good health. Foods should be selected from a diverse food groups each day.

The following sample menu is a guide to help you adjust to the gluten-free diet. The dishes listed here are simple to prepare and can be readily incorporated into one’s daily routine. There are also numerous cook books on the market that can help inspire your meals while maintaining a gluten-free menu.

How to prepare a safe meal without gluten.

Select ingredients that you know are gluten-free. Keep a list handy of foods that are naturally gluten free and gluten free products from a reliable source.
_ Never use unwashed utensils (bowls, ladles, strainers, pots, etc.) that have been in contact with gluten containing foods.
_ Do not place the food directly on contaminated surfaces, such as the countertop, baking pans, the bottom of the oven, hotplates, grill, or even your hands. Clean everything well before beginning work.
_ Use a toaster over, or a separate toaster, or reusable toaster bags.
_ Do not reuse oil that has already been used to fry flour-coated or breaded food.
_ Use squeeze bottles of condiments wherever possible (ketchup, mayo, mustard) to avoid double dipping.
_ Do not reuse water that has already been used to cook gluten containing pasta.
_ Use greaseproof paper (wax paper) or aluminum foil on plates and surfaces that may have been contaminated.

Counteracting possible dietary deficiencies and associated intolerances.

The gluten-free diet, which has now been used to treat individuals with celiac disease for more than 50 years, is a dietary pattern that is safe and nutritious for all age groups, even in special situations (such as pregnancy or diabetes). The gluten free diet could be low in B complex vitamins, calcium, iron, and fiber. Adding plenty of high complex carbohydrate grains, flours, plenty of fresh fruits and vegetables on a daily basis will enhance the nutritional content of the diet. Foods rich in these nutrients are listed in the box. A gluten-free multi-vitamin or other supplements may be prescribed by your healthcare provider depending on your specific nutrient needs.

Iron:
Sources: meats (beef, liver), fish (sardines, clams, oysters), beans (white, lentil,chickpea), grains (quinoa, buckwheat, teff) dark green leafy vegetables, seeds and nuts

Calcium:
Sources: Dairy products (milk, yogurt, cheese), fortified milk substitutes and juices, fish (sardines, salmon with bones, trout, perch), dark green leafy vegetables (spinach, dandelion and turnip greens, kale), beans, grains (quinoa, buckwheat, millet)

B Complex vitamins:
Sources: Grains(quinoa, buckwheat, millet, brown rice, amaranth) dark green leafy vegetables, legumes, meats and dairy products

Fiber:
Sources: Beans (navy, kidney, split pea, lentils, black beans, pinto beans, chickpeas) sweet potato with skin, grains (quinoa, buckwheat, millet, brown rice, amaranth, flax seed meal, rice bran) raw fruits and vegetables; stewed prunes, dried figs, nuts

It may occur in celiac disease. 

Some individuals with celiac disease may also present with a temporary lactose intolerance. Lactose intolerance is an inability to digest the carbohydrate lactose found in milk. Usually lactase (the enzyme that digests lactose) is found in the tips of healthy villi. In some individuals with celiac disease the temporary blunting of villi may cause lactose intolerance. Nevertheless, a reduced tolerance to lactose may persist even after starting the gluten free diet. In these cases, the consumption of foods which are rich in lactose, especially cow's milk, may cause persistent symptoms such as abdominal pain and flatulence. The treatment of this condition requires the avoidance of foods that are rich in lactose, such as whole milk and dairy-based ice cream. Since the intestine retains the capacity to digest limited quantities of lactose, other dairy products such as yogurt and cheeses are generally well tolerated in most cases. There are many reduced lactose products on the market (lactaid milk, lactaid cottage cheese, lactaid ice cream, as well as the lactase enzymes tablets and drops). In addition there are many lactose free products (rice, soy or almond milk, cheese, and other dairy substitutes) that may be used while the intestines heal.

Two illnesses with a common origin, one balanced diet to treat them both 

Between five and ten percent of patients with Type 1 (insulin dependent) diabetes are also affected by celiac disease. In order to treat these two diseases together, it is necessary to maintain a healthy, balanced diet. The diabetic diet plan should include enough calories to maintain a healthy weight consisting of complex carbohydrates (i.e. gluten-free bread and pasta) and foods that are rich in fiber (vegetables, legumes, and fresh fruit), lean proteins and heart healthy fats. With regard to fats, it is best to select those of vegetable origin (such as olive and canola oil) and those rich in polyunsaturated fatty acids (such as anchovies, sardines, and mackerel) for their beneficial effect upon the levels of cholesterol in the blood. In order to avoid a spike in blood sugar levels after meals, foods that are high in sugar (sweets) should be consumed in moderation. Finally, it should be kept in mind that the treatment of celiac disease has a very positive effect upon diabetes, both because it helps to improve metabolic control and sometimes even to reduce the need for insulin.

Research on a therapeutic solution is still underway.

Studies are being conducted, for example, on less toxic varieties of grain, on enzymes that are capable of metabolizing the protein elements that are most difficult for celiacs to digest, and on anti-transglutaminase or anti-cytokine and immunomodulatory drugs capable of blocking the abnormal response to gluten (similar to a vaccine). At present, tests on the efficacy of these potential alternative treatments are still at a very early stage. While it is easy to envision a rosier future for individuals with celiac disease, predicting a time frame for the completion of the research is more difficult. It must be stressed that any new treatment will have to prove itself to be better than the existing one, namely the safe, effective, and readily available glutenfree diet.

Routine follow up is recommended with your physician and dietitian.

Once the diagnosis is made your progress will be followed through blood tests. If the blood tests return to normal routine biopsy are not necessary. However, it is advisable for the individual with celiac disease to have periodic checkups with their physician and dietitian. There are additional laboratory tests can help to monitor your health status. 
These include: 
- antibody levels
- blood tests for iron and ferritin will monitor your iron metabolism. Any persistent iron deficiency can be addressed with supplementation. 
- bone density tests monitor the health and strength of ones bones 
- basic metabolic tests (total cholesterol, HDL cholesterol, triglycerides, and blood glucose) should be done on a periodic basis especially if there is a marked increase in weight. 
- anti-tTG antibodies and possibly the HLA-DQ2/DQ8 genotype tests should be done for immediate family members (children, brothers, sisters and parents). 
The risk of having the celiac disease is approximately one in ten. For this reason, even if family members appear to be in good health, they should be tested for the celiac markers.

The most difficult hurdle to overcome is the initial diagnosis. 

For many people being diagnosed with celiac disease is a relief. It is the underlying reason for their fatigue, anemia, or other symptoms. The other reason for relief is that good health can be restored by following a gluten-free diet. This initial relief and improvement in physical health can be followed by the realization that this diet regime is for life. For the individual with celiac disease, the rigours of a strict dietary regime can be challenging. However there is a wide variety of gluten-free products recently made available by the specialty food industry that has contributed substantially to improving the quality of life for the individual with celiac disease. Gluten-free products are more and more readily available in supermarkets, either in prepared form or as ingredients to use in cooking. The gluten-free diet becomes especially challenging when meals are consumed away from home, because the availability of gluten-free dishes and snacks is still limited in restaurants, bars and cafeterias. This situation is, however, getting better year by year, thanks to the dedicated efforts of celiac associations and the growing attention of institutions and the mass media.

Life at school 
Travel, social occasions, school and college or sleep away camp are all areas of special concerns to children with celiac disease. Elementary and middle school years are all about learning to be social and interact in a group. Compliance to a gluten-free diet makes this a very difficult task for children with celiac disease. Not only must their food be gluten-free it also cannot be mixed with the other meals and snacks because of cross contamination issues. In addition to the hazards of meal and snack time, the classroom itself poses several challenges to these children. Some art supplies may contain gluten such as playdough, paper mache and glue. Art projects requiring glue and other material are usually performed at the child’s desk. This seemingly simple task rendered the child’s own desk contaminated, and therefore must be cleaned before the child has their snack or lunch at the same table or desk. Now it is understood that a child may not be eating their art supplies, nor are they absorbed through the skin, but careful handwashing will avoid any potential trace ingestion. Many schools, camps and day care facilities can provide safe meals for celiac children. In the United States provision of a gluten-free meal is considered a right of the individual under the Americans with Disability Act. Under the Americans with Disability Act a 54 0 Accomodation Plan can be developed with the institution that will ensure provision of either meals or other provisions for individuals with special need. 

Adolescence 
Adolescence is a turbulent time for teens as well as their parents. It is a time when teens often will challenge the usual routines, rules and any limitations that make them feel different from their peers. It is a time when they most want to be similar to the group rather than different in anyway. Food and meals away from home is the usual way teens socialize further making socialization and fitting in even more difficult for the teen with celiac disease. Another area of concerns for teens is leaving the safety of there home and going away to college. The prospect of entering that semi adult world of college study is daunting enough on its own. Now the adolescent with celiac disease must also maneuver through the dining services to make sure they are able to obtain a safe uncontaminated gluten free meal. The best approach is to support and guide the teen through these times of self development. Discussions of health and following a diet can become confrontational and therefore professional guidance is recommended. The good news is that these turbulent times are temporary. Most teens develop their own sense of identity that will include a gluten-free diet.

Schär is a company specializing in the production of gluten-free foods.

We are serious about our quality and our commitment to you. Here are 10 good reasons to feel good about Schär. 

- Naturally gluten-free 
- Absence of lactose in many of our products
- Freshness without preservatives 
- High natural fiber content in many products 
- No hydrogenated fat or trans fat 
- Quality oils: sunflower seed and olive oil 
- Ingredients rich in nutritious components (such as isolated pea protein and lupine) 
- Uses flours naturally rich in nutrients instead of starches 
- Exhaustive quality control procedures to ensure a guaranteed level of maximum quality beginning with the manufacturing process 

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 - latest information on the gluten-free diet 
- gluten-free recipes 
- a free subscription to our consumer magazine "YourLife" 
- useful tips and resources for a healthy, happy gluten-free lifestyle 
- postings on gluten-free events 
- free samples to try and ending at your kitchen table 
- 25 years of experience and leadership in the European market setting the standard for taste & quality

Living life without giving up taste

The result of Schär’s research is, year after year, a range of products that are always new, fresh and delicious. Thanks to these products, individuals with celiac disease do not have to give up the pleasures of fine dining. A balanced and varied diet is the prescription for a long and healthy life, especially for individuals with celiac disease. Guided by this vision, Schär has developed a vast assortment of foods, which, though gluten-free, are nutritious, flavorful and tempting. The life of an individual with celiac does not have to be one of sacrifice and deprivation. And Schär knows this well, having worked to ensure that for over 25 years. Taste for Life is for those who won’t compromise when sitting down to a good meal.