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A Guide to Living with Celiac Disease

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A Guide to Living with Celiac Disease CD SKILLS A guide to living with celiac disease Visit CD SKILLS (Danube Transnational Programme) website and stay informed: http://www.interreg-danube.eu/approved-projects/cd-skills Our e-learning tools for patiens and health care professionals are available at: www.celiacfacts.eu CD SKILLS (DTP 571) project is co-funded by the Interreg Danube Transnational Programme. Authors: Jernej Dolinšek, Jasmina Dolinšek, Petra Rižnik, Tomaž Krenčnik, Martina Klemenak, Marija Aja Kocuvan Mijatov, Simona Ornik, Majda Jurše, CIP - Kataložni zapis o publikaciji Jernej Vidmar, Ilma Korponay-Szabo, Goran Palčevski, Marina Milinović, Univerzitetna knjižnica Maribor Igor Dovnik, Judit Gyimesi Gallisz, Peter Szitanyi, Marcela Floriankova, Kaja Krajnc, Alina Stanescu Popp, Otilia Man, Ida Čarnohorski, Zrinjka Mišak, Maja Piskernik, 616.341-008.6(035)(0.034.2) Maria Luisa Mearin, Margreet Wessels, Nataša Dragutinović, Vesna Pavkov, Almuthe Christina Hauer, Mirela Marković. A GUIDE to living with celiac disease Editors: Jasmina Dolinšek, Petra Rižnik [Elektronski vir] / [authors Jernej Dolinšek ... Proofreading: Tina Kamhi Trop [et al.] ; editors Jasmina Dolinšek, Petra Rižnik]. - E-priročnik. - Maribor : Municipality, 2021 Publisher: Municipality of Maribor, 2021 Design: Studio 8 Način dostopa (URL): http://www.interreg- danube.eu/approved-projects/cd-skills/outputs This e-brochure contains advice relating to gluten-free diet and gluten-free living, ISBN 978-961-95378-1-7 (PDF) but it doesn’t replace medical advice from your doctor, dietitian, or any other COBISS.SI-ID 66435843 specialist. It is absolutely recommended to visit your physician and to follow his advice. Living with coeliac disease You have probably just been diagnosed with coeliac disease and you have to change to a gluten-free diet, which will enable you to control your health. The first steps will not be easy and your head is probably over- perfectly safe for you: meats, vegetables, fruits, fish, and most loaded with new information, but a coeliac diagnosis is not the dairy products (natural and unprocessed). Rice, corn, potato, worst thing, although it can feel like the end of your world. buckwheat, quinoa, and millet are all safe, as long as they are not contaminated with gluten. This booklet/guide will support This booklet/guide will provide you with information about coe- you to make a smooth transition into your new lifestyle. liac disease, its symptoms, diagnostic methods and treatment, the importance of dietary adherence and regular follow-up as Make an effort to learn all you can about your condition. Read well as the recommended screening of family members. It will recently published books written by acknowledged experts and offer you guidance about living a gluten-free life, about chang- turn to websites run by national coeliac organizations, noted es in your lifestyle, where to find necessary information, patient coeliac research centres, and trusted publications. The Internet support, and answers to your questions. Using this guide, you can be a source of material but some of it might not be reliable. will find that eating, cooking and travelling gluten-free can be easy. Our tips will help you to transform your kitchen into a glu- We suggest you join a coeliac disease patient support group (coeli- ten-free zone or at least into a safe environment where the risk ac society), which will give you plenty of information, food samples, of gluten contamination is minimized. We recommend you to tips for local restaurants, physician recommendations, recipes, and, watch our “Gluten-free kitchen” video tutorial, available at our of course, friendship and emotional support; they organize various project website http://www.interreg-danube.eu/approved-pro- meetings, parties, picnics, camps, trips, and much more. We wish jects/cd-skills. you a balanced gluten-free everyday life at home, on the go, and when dining out. If you would like to learn more about coeliac dis- You will find a detailed gluten-free bread recipe and some glu- ease, please refer to our website and join our e-learning course for ten-free shopping tips. You will also see that a gluten-free diet patients, which is available at www.celiacfacts.eu. can be rich and varied. You will soon be able to leave your symp- toms and suffering behind by following a diet, a treatment that Dear reader, we hope that you will find a lot of helpful informa- involves no medications, no side effects, and no surgical proce- tion reading our booklet/guide. We sincerely hope that it will dures. All you have to do is cut “gluten”- a protein fraction from help you to better organize the very demanding gluten-free life wheat, rye, barley, and in some cases oats or their crossbred va- you are about to live. We also wish that meeting your everyday rieties, and its derivatives out of your diet. By cutting out gluten, challenges of coeliac disease will be less stressful with our help. your body will begin to recover, however, it is crucial to assure that your diet is properly balanced. The fact is, a lot of foods are Asst. prof. Jernej Dolinšek, MD, PhD 3 TEST YOUR KNOWLEDGE ABOUT About coeliac disease COELIAC DISEASE Coeliac disease is an autoimmune systemic disorder caused by ingestion of gluten If you want to test your and related proteins found in wheat, rye, barley, and in some cases also in oats in knowledge, please genetically predisposed individuals. It is one of the most common chronic diseases contact the lead partner. among children and adults and affects about 1% of the population in Europe. However, many patients remain undiagnosed. Coeliac disease is a complex disorder testinal mucosa characteristic for coeliac The coeliac iceberg is large, representing strongly associated with HLA-DQ2 or DQ8 disease, although they seem to be clini- 1% of the total population. However, only haplotypes and specific immunological cally asymptomatic. Diagnosis of coeliac a small proportion of these patients is and environmental factors. In coeliac dis- disease is primarily based on the clinical detected, corresponding to the tip of the ease patients, ingestion of gluten triggers picture. However, the final diagnosis is al- iceberg. Various data show that only 10% of patients are detected due to symptoms chronic damage of the small intestine. The ways based on the presence of a specific and signs, whereas 90% can remain consequence of the morphological chang- reversible immune response and in the undiagnosed for a longer period. es in the intestinal lining is its weakened majority of patients also on detecting his- function with symptoms of malabsorp- tological changes of the small intestine. In tion. The characteristic clinical symptoms some cases, the diagnosis can be made of the disease, such as diarrhoea and ma- without an intestinal biopsy. It is impor- labsorption syndrome, are not the most tant, that patients do not start with a glu- common forms of the disease anymore. ten-free diet before they receive the final Atypical symptoms and silent forms of diagnosis. The only possible way to treat the disease are becoming more and more coeliac disease is a very strict lifelong glu- frequent. Based on the clinical picture, ten-free diet, which improves the clinical coeliac patients can be divided into two picture, normalizes the level of antibodies, groups: symptomatic and asymptomatic and restores the damaged intestinal lin- coeliac disease. The symptomatic coeliac ing. Following a strict diet is also the only disease usually presents with gastroin- way to prevent the development of serious testinal or extra-intestinal symptoms and long-term effects of the disease. The most The size of the submerged part depends signs. The term asymptomatic or silent significant risk factor for long-term com- very much on patients’ awareness, coeliac disease is used to refer to patients plications is inadequate gluten-free diet knowledge of healthcare professionals, who were diagnosed with changes of in- compliance. and availability of reliable diagnostic tools. 4 Prevalence and symptoms of coeliac disease Coeliac disease (CD) occurs in 1 of 100 people in Europe and it is more frequent in women. Family members of patients are more often affected than the general population. Possible symptoms and signs of coeliac disease sorption, gastrointestinal symptoms nowadays occur only in about half of the patients. There are vulnerable periods of life In coeliac disease, almost all organs can be affected, but the when high nutrient demands may lead to severe symptoms pattern of the damage is not unvarying and not all types of faster or more often. These are early childhood (1-4 years of symptoms can be attributed to coeliac disease. Symptoms age) and puberty, both characterized by a fast spurt in growth, are usually a consequence of a combination of inflammation, and lactation period after giving birth in women. Most coeliac nutrient deficiencies due to subnormal absorption, and auto- disease patients are, however, symptom-free during childhood immunity to the enzyme transglutaminase (TG2). Antibodies or have non-specific or mild complaints for which no medical against transglutaminase are produced early in the course of advice is sought. Some symptoms or signs, such as low bone coeliac disease. Transglutaminase is present in the mesh-like mineral density or neurological problems may become appar- architectural frame of tissues, called reticulin fibres, and is re- ent only after decades. sponsible for the integrity of connective tissue by making firm connections between molecules. The binding of coeliac anti- Stomach and gut bodies to TG2 may disturb the normal interactions of TG2 with other proteins and may lead to structural alteration in different Diarrhoea, bloating and flatulence are common symptoms organs. of coeliac disease. Reduction of the absorptive surface of the gut leads to decreased absorption of nutrients which part- Coeliac disease can be present even in the absence of the ac- ly remain in the gut and can cause diarrhoea, fatty, pale and tual symptoms.
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