Celiac disease is an autoimmune disorder characterized by an inability to digest gluten, a protein found in wheat and other grains It affects as many as in 133 Americans yet remains frequently undiagnosed Written by a nurse, dietitian, and clinical pharmacist, CELIAC DISEASE provides everything you need to know about how to get diagnosed, manage your symptoms, and adjust to living a gluten-free lifestyle, including how to: • Eat gluten free and avoid hidden glutens, especially in common medications • Prevent the most prevalent complications of celiac disease • Cook and bake gluten free using delicious, easy-to-prepare recipes Mary Kay Sharrett, MS, RD, LD, CNSD, is a clinical dietitian at Columbus Children's Hospital in Columbus, Ohio She is the clinical liaison to the Columbus Children's Hospital Gluten-Free Gang Support Group Steve Plogsted, PharmD, is a pharmacist at Columbus Children's Hospital in Columbus, Ohio He specializes in the prescription and over-the-counter medication needs of patients with celiac disease ALSO AVAILABLE AS AN EBOOK BOWER with Sharrett and Plogsted Sylvia Bower, RN, lives with celiac disease and has been a practicing nurse for 50 years She has participated in the Gluten-Free Gang, one of the first celiac disease support groups, for over 16 years Bower is the author of What Nurses Know…Gluten-Free Lifestyle and has published articles in a variety of media outlets including the Gluten Intolerance Group Magazine a guide to living with —ALESSIO FASANO, MD, Director, Center for Celiac Research, Massachusetts General Hospital GLUTEN INTOLERANCE “A comprehensive guide to living with celiac disease and gluten sensitivity As Sylvia points out, we’ve taken ‘giant steps’ forward in the diagnosis and treatment of celiac disease since the publication of her first book in 2006 With this edition, Sylvia offers the same downto-earth guidance for the newly diagnosed, and Mary Kay provides terrific guidance about navigating the gluten-free diet I would definitely recommend this book for anyone wishing to learn more about how to live both gracefully and gratefully with celiac disease and gluten-related disorders.” CELIAC DISEASE AN INDISPENSABLE GUIDE FOR THOSE WITH CELIAC DISEASE, THEIR FAMILIES, AND ANYONE SUFFERING WITH SYMPTOMS (SUCH AS STOMACH PAIN, BLOATING, FATIGUE, HEADACHES, AND ANEMIA) WHO SUSPECTS GLUTEN INTOLERANCE SECOND EDITION 11 W 42nd Street, 15th Floor New York, NY 10036-8002 with Mary Kay Sharrett, MS, RD, LD, CNSD, and Steve Plogsted, PharmD CELIAC DISEASE a guide to living with GLUTEN INTOLERANCE second edition www.demoshealth.com $18.95 SYLVIA LLEWELYN BOWER, RN cover design by carlos maldonado Celiac Disease Also by Sylvia Llewelyn Bower, RN What Nurses Know Gluten-Free Lifestyle Celiac Disease A Guide to Living with Gluten Intolerance Second Edition Sylvia Llewelyn Bower, rn with Mary Kay Sharrett, ms, rd, ld, cnsd, and Steve Plogsted, pharmd NEW YORK Visit our website at www.demoshealth.com ISBN: 978-1-936303-63-2 e-book ISBN: 978-1-617052-06-4 Acquisitions Editor: Julia Pastore Compositor: diacriTech © 2014 by Sylvia Llewelyn Bower, Mary Kay Sharrett, and Steve Plogsted All rights reserved This book is protected by copyright No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher Medical information provided by Demos Health, in the absence of a visit with a health care professional, must be considered as an educational service only This book is not designed to replace a physician’s independent judgment about the appropriateness or risks of a procedure or therapy for a given patient Our purpose is to provide you with information that will help you make your own health care decisions The information and opinions provided here are believed to be accurate and sound, based on the best judgment available to the authors, editors, and publisher, but readers who fail to consult appropriate health authorities assume the risk of injuries The publisher is not responsible for errors or omissions The editors and publisher welcome any reader to report to the publisher any discrepancies or inaccuracies noticed Library of Congress Cataloging-in-Publication Data Bower, Sylvia Llewelyn Celiac disease : a guide to living with gluten intolerance / Sylvia Llewelyn Bower, RN with Mary Kay Sharrett, MS, RD, LD, CNSD, and Steve Plogsted, PharmD[M01] —Second edition pages cm Includes bibliographical references and index ISBN 978-1-936303-63-2 1. Celiac disease—Popular works 2. Gluten-free diet—Popular works I. Sharrett, Mary Kay II Plogsted, Steve III Title RC862.C44B69 2014 616.3’99 dc23 2014014102 Special discounts on bulk quantities of Demos Health books are available to corporations, professional associations, pharmaceutical companies, health care organizations, and other qualifying groups For details, please contact: Special Sales Department Demos Medical Publishing, LLC 11 West 42nd Street, 15th Floor New York, NY 10036 Phone: 800-532-8663 or 212-683-0072 Fax: 212-941-7842 E-mail: specialsales@demosmedical.com Printed in the United States of America by McNaughton & Gunn 14 15 16 17 18 / 5 4 3 2 This book is dedicated to my husband Jack Bower who has been by my side and encouraged me through it all Contents Foreword by Ivor Hill, MD ix Preface xi Acknowledgments xiii Share Celiac Disease, Second Edition 1. What Is Celiac Disease? 2. Diagnosis and Treatment 19 3. Dermatitis Herpetiformis 33 4. A Healthy Gluten-Free Diet Mary Kay Sharrett 43 5. Complications 55 6. Tackling the Emotional Side of Celiac Disease 65 7. Raising a Child with Celiac Disease 75 8. The Gluten-Free Kitchen 85 9. Eating Out and Enjoying It 97 10. Managing Celiac Disease 107 11. Pulling It All Together 113 12. Gluten in Medications Steve Plogsted 125 13. The Future for Celiac Disease 135 FAQ 139 Recipes 143 vii viii Resources Mary Kay Sharrett 183 Bibliography 197 Glossary 205 Index 211 Celiac Disease Foreword Celiac disease is now considered to be one of the most common chronic conditions affecting mankind and occurs in about 1% of the general population in the United States While it has been gratifying to see the diagnosis made more frequently in the past two decades, there are still many people with celiac disease who remain undiagnosed or go for prolonged periods with symptoms before the condition is recognized Confirming a diagnosis of celiac disease can bring relief to those who have suffered unexplained symptoms for long periods of time but may lead to a host of new concerns that go with the major lifestyle changes that occur with treatment Maintaining a strict gluten-free diet for life is essential for the health and well-being of people with celiac disease A gluten-free diet can be cumbersome to follow, increase the cost of living, and impose new restrictions on one’s lifestyle For these reasons it is important to be certain of the diagnosis and not confuse celiac disease with other “gluten” sensitive conditions for which such strict adherence to the diet may not be necessary The second edition of Celiac Disease: a Guide to Living with Gluten Intolerance by Sylvia Llewelyn Bower is both timely and a delight to read The author takes one through a brief history of celiac disease before describing the variable clinical manifestations that make the condition so unique and interesting Tests to identify those who might have celiac disease are covered and the importance of confirming the diagnosis by means of an intestinal biopsy is emphasized ix 203 Philip, R., Patidar, P., Saran, S., Agarwal, P., Arva, T., & Gupta, K (2012) “Endocrine manifestations of celiac disease.” Indian Journal of Endocrinology and Metabolism, 16(Suppl 2), S506–S508 doi: 10.4103/2230-8210.104149 Potocki, P., & Hozyasz, K (2002) “Psychiatric symptoms and coeliac disease.” Psychiatria Polska [Psychiatr Pol], 36(4), 567–578 Riddle, M S., Murray, J A., Cash, B D., Pimentel, M., & Porter, C K (2013) “Pathogen-specific risk of celiac disease following bacterial causes of foodborne illness: a retrospective cohort study.” Digestive Diseases and Sciences, 58(11), 3242–3245 Rodrigo, L., Blanco, I., Bobes, J., & de Serres, F J (2013) “Clinical impact of a gluten-free diet of health-related quality of life in seven fibromyalgia syndrome patients with associated celiac disease.” BMC Gastroenterology, 13(1), 157 doi: 10.1186/1471-230X-13-157 Rostami, K., Steegers, E A., Wong, W Y., Braat, D D., & Steegers-Theunissen, R P (2001) “Coeliac disease and reproductive disorders: a neglected association.” European Journal of Obstetrics and Gynecology and Reproductive Biology, 96(2), 146–149 Rubio-Tapia, A., Hill, I D., Kelly, C P., Calderwood, A H., & Murray, J A (2013) ACG clinical guidelines: diagnosis and management of celiac disease The American Journal of Gastroenerology, 108(5), 656–676; quiz 677.doi: 10.1038/ajg.2013.79 Sanchez-Albisua, I., Wolf J., Neu, A., Geiger, H., Wascher, I., & Stern M (2005) “Coeliac disease in children with type I diabetes mellitus: the effect of the gluten-free diet.” Diabetes Medicine, 22 (8), 1079–1082 Siegel, B (1998) Prescriptions for Living New York, NY: HarperCollins Soni, S., & Badawy, S Z (2010) “Celiac disease and its effect on human reproduction: a review.” The Journal of Reproductive Medicine, 55(1–2), 3–8 Review Bibliography 204 Volta, U., Caio, G., Tovoli, F., & DeGiorgio R (2013) “Nonceliac gluten sensitivity: questions still to be answered despite increasing awareness.” Cellular Molecular Immunology, 10(5), 383–392 doi: 10.1038/cmi.2013.28 Woodward, J (2013) “The management of refractory coeliac disease.” Therapeutic Advances in Chronic Disease, 4(2), 77–90 doi: 10.1177/2040622312473174 Zebrowska, A., Narbutt, J., Sysa-Jedrzejowska, A., Kobos, J., & Waszczkowska, E 2005 “The imbalance between mettallo-proteinases and their tissue inhibitors is involved in the pathogenesis of dermatitis herpetiformis.” Mediators of Inflammation, 2005(6), 373–379 Zugna D., Richiardi, L., Akre, O., Stephansson, O., & Ludvisson, J F (2010) “A nationwide populationbased study to determine whether coeliac disease is associated with infertility.” Gut, 59(11), 1471–1475 doi: 10.1136/gut.2010.219030 Celiac Disease Glossary Anemia Reduction below normal in the number of red cells or quantity of hemoglobin that occurs when (a) blood production is disturbed, (b) there is blood loss, (c) there is poor or a lack of iron absorption Antibodies Cells that the body develops when it feels it is being attacked An antibody is a protein used by the immune system to identify and neutralize foreign objects such as bacteria and viruses Each antibody recognizes a specific antigen unique to its target Production of antibodies is referred to as the humoral immune system Aphthous stomatitis Sores in the oral mucosa commonly called canker sores (Not caused by the herpes simplex virus.) Arrhythmia Abnormal heart rate Celiac/coeliac disease Also referred to as celiac sprue, gluten-sensitive enteropathy, and nontropical sprue Symptoms include one or more of the following: gas, abdominal pain, bloating, chronic diarrhea, pale foulsmelling stools, weight loss/weight gain, fatigue, anemia, bone or joint pain, osteoporosis/osteopenia, behavioral changes, tingling numbness in legs, muscle cramps, seizures, missed menstrual periods, infertility, recurrent miscarriage, delayed growth (children), failure to thrive (infants), a phthous ulcers (sores in the mouth) 205 206 Constipation Infrequent or difficult evacuation of feces (stool) Crohn’s disease An inflammation of the digestive tract Most commonly affects the lower part of the small intestine called the ilium The swelling extends deep into the lining of the affected area (all layers may be involved) Also called ileitis or enteritis Symptoms include: abdominal pain, diarrhea, bloating, weight loss and/or bleeding Dental enamel hypoplasia Loss of enamel on teeth due to malabsorption of calcium Dermatitis herpetiformis Skin condition that occurs in 25% of CD patients The skin eruptions are extremely itchy and are a manifestation of the damage that is happening in the small intestine Diabetes mellitus type 1 Usually called juvenile diabetes which is a condition requiring insulin to regulate the blood sugar Diabetes mellitus type 2 Common onset is over 40 years of age Controlled with hypoglycemic medication and diet Diarrhea Abnormal and frequent liquid evacuation of feces (stool) Down syndrome A chromosomal condition associated with mental retardation, characteristic facial expressions, and poor muscle tone Increased risk of other physical conditions Endomysial antibodies Antibodies produced when the gluten in grains are introduced into an individual with CD Celiac Disease 207 Endoscopy Procedure that allows the gastroenterologist to examine and biopsy the esophagus, stomach, duodenum, and small intestine by using a tube (scope) with a light on it Enriched Adding back nutrients lost during the processing of the food product Fortified Adding nutrients that are not present in the original product Gliadin A protein complex found in wheat that produces antibodies in an individual with CD Gluten ataxia A loss of balance condition of CD which is caused by the antibodies tissue transglutaminase six (tTG6) Gluten contamination elimination diet (GCED) A detailed list of ingested foods that can identify what foods create symptoms and determine gluten contamination in the diet Gluten-free diet (GFD) A diet that contains no known proteins of wheat, barley, and/or rye Gluten-sensitive enteropathy A diagnosis frequently used for CD Glutenin A protein found in wheat Hemoglobin An iron-containing red blood cell that functions to transport oxygen from the lungs to the tissues of the body Hordein A protein complex found in barley that produces antibodies in an individual with CD Glossary 208 Hypochondria (hypochondriac) Severe anxiety about one’s health associated with numerous and varying symptoms that cannot be attributed to disease Immunochromatographic assay A highly accurate new laboratory test that is showing promise in diagnosing CD Iron deficiency anemia Caused by iron deficiency either by blood loss, malabsorption of iron in the small intestine, or disturbance of blood production Irritable bowel syndrome An inflammation of the intestine that can occur in any part of the intestinal tract from various causes Symptoms include: diarrhea, abdominal bloating, abdominal pain, and constipation Lactose intolerance Inability to digest lactose, which is the sugar found in milk Results in abdominal pain, bloating, gas, and possible diarrhea Lupus erythematosus (SLE) Autoimmune disease that is a generalized connective tissue disorder, usually involving several body systems Malabsorption Any condition that prevents nutrients from being absorbed from foods into the digestive tract Multiple sclerosis An autoimmune disease in which there are lesions in the central nervous system causing numbness, speech problems, and visual problems It has periods of remission and is a long-term condition Multisystem disorder More than one system in the body is affected In CD, the gastrointestinal tract is involved; however, the skin, brain, and other areas of the body may be involved Celiac Disease 209 Non-responsive celiac disease (NRCD) When symptoms persist while on the GFD Osteoporosis Calcium deficiency that results in bones becoming porous and increasing a risk of fracture Peripheral neuropathy Loss of feeling in the fingers or toes as a result of nerve endings dying Prolamines A protein complex found in grains that produces antibodies in an individual with CD Refractory celiac disease (RCD) Persistent symptoms and signs of malabsorption after gluten exclusion for 12 months with ongoing villous atrophy Seculin A protein complex found in rye that produces antibodies in an individual with CD Sjögren’s syndrome Autoimmune disease that occurs in middle-aged or older women Symptoms include: dryness of the mouth, inflammation of the eyes, and enlargement of the parotid glands Small intestine The area of the digestive tract between the stomach and large intestine It contains the villi (or folds) that absorb most nutrients Sprue A term formerly used for celiac disease (celiac sprue) Tissue transglutaminase A family of enzymes that are specific and sensitive to the antibodies produced by CD (tTG in the gut, tTG in the skin, and tTG in the nervous system.) Glossary 210 Turner syndrome Chromosomal condition that affects development in females Ulcerative colitis Inflammation and sores in lining of the rectum and colon Symptoms include: diarrhea, a bdominal pain, anemia, fatigue, loss of appetite, weight loss, rectal bleeding, skin lesions, joint pain, and growth failure (children) Villi The small hair-like projections in the small intestine that absorb nutrients from food Williams syndrome Developmental disorder that affects many parts of the body Mild to moderate mental retardation, unique personal characteristics, distinctive facial features, and heart and blood vessel problems Wireless capsule endoscopy A miniaturized camera that is swallowed and remotely visualizes the intestinal tract Xanthan gum Substance added to gluten-free baked products to add elasticity to the dough Celiac Disease Index Academy of Nutrition and Dietetics, 111 Addison’s disease, 61 Adversity, dealing with, 122–123 aerobic exercises, 119 American Celiac Disease Alliance, 80, 111 anemia, 56 celiac disease and, antibodies, endomysial, aphthous ulcers, 10–11, 62 autism and gluten sensitivity, 17, 61–62 autoimmune diseases, 10–11, 14, 17, 22, 63 DH and, 36, 37 baking gluten-free breads, 86, 93–94 buns, 94 cakes, 94–95 cookies, 95 ingredients, 90–91 “banana diet” theory, bean flours, 91 blood tests, 9, 20–21 calcium, 52 GFD and, 43 anemia and, malabsorption, 52, 56–57 osteoporosis, 37, 117 cancer, 24, 57, 71 GSE, 34 care conference, 27–28 celiac disease (CD), 34, 107–112, 116–118 acting, not reacting, 96 Addison'’s disease and, 61 age of onset, anemia and, 56 aphthous ulcers and, 62 assay, autism and, 61–62 autoimmune diseases and, 62 awareness, 110–111 baking gluten-free, 90–93 blood tests (tTG and EMA), 20–21 calcium malabsorption and, 56–57 cancer and, 57 care conference, 27–28 changes in knowledge about, children, diagnose, 23–31 clinical trials, 137–138 common emotional reactions, 66 common experiences, 68–69 complications, 55–63 cravings, 94 defined, 5–8 dental enamel disorders and, 56 dermatitis herpetiformis and, 9–10, 32–42, 58 diabetes and, 62 diagnosing children, 23–31, 77 211 212 celiac disease (CD) (continued) diagnosis, 19–31, 135–136 diet and, 2, 3–4, 11, 15, 22–23 Down syndrome and, 62 dysrhythmia and, 62 eating out, 97–105 educating the public, 110, 137 EMA, 6, emotional issues, 65–73 family and, 24, 69 fibromyalgia, 62 friends and, 24, 68, 69 future for, 135–138 genetics and, 21–23 history, 2–5 IgA test, 20 infant onset, 75–76 infertility and, 58–59 inflammation and, 56 joint pain, 62 kitchen safe zone, 85–89 lactose intolerance and, 9, 59 liver disorders and, 61 living with, 27–31 medications and, 125–133 menopause and, 59 microscopic colitis and, 62–63 multiple sclerosis and, 63 versus NCGS, 15–16 neurologic symptoms, 59–60 newly diagnosed children, 66 nonresponsive and refractory, 63 pathology, 35 pregnancy and, 58–59 prevalence, at risk individuals, 11 schools and children with, 79–81 self-assessment, 11–14 Sjögren syndrome and, 63 support and education and, 71–73 support groups, 66–71, 76, 78–79 symptoms, 9–11 treatment, 19–31, 136–137 type I diabetes and, 62 who should be tested, 10–11 celiac iceberg, 24–25 cellulose, 131 children with celiac disease diagnosing, 77 infant onset, 75–76 need for parental education, 77 schools and, 79–81 snacks and, 81–84 support group role, 76, 78–79 teaching independence in food choices, 76–77 club soda, 103, 114 croscarmellose sodium, 131 crospovidone, 132 Dapsone, 36–37, 40–42 dental enamel defects, 56–57 depression, 57–58 dermatitis herpetiformis (DH), 33–42 autoimmune diseases and, 36, 37 celiac disease and, 9–10, 36, 58 diet, 39–40 and genetics, 35–37 GFD and, 36–37 other skin rashes cause, 33–34 treatment, 37 diabetes, 11, 23, 37, 62 neuropathy and, 60 diagnosis, 4–5, 8, 10, 19–25 and self-assessment, 11–14 personal stories of, 25–27 dietary reference intakes (DRIs), 48–49 digestive system, Down syndrome, 62 DRIs See dietary reference intakes dysrhythmia, 62 Celiac Disease 213 educating others in celiac disease research, 137 friends and family, 103–104 the public, 110 school officials, 79–80 eggs, GF baking, 90 ELISA See enzyme-linked immunosorbent assay EMA See endomysial antibodies emotional issues and celiac disease, 65–73 endomysial antibodies (EMA), enriched foods, 48 enzyme-linked immunosorbent assay (ELISA), 20 European Union, food labeling, 111–112 excipients, in pharmaceuticals defined, 125 list, 131–133 manufacture and, 126 exercise, 119 FALCPA See Food Allergen Labeling and Consumer Protection Act family, kitchens, 82, 85–86 fiber intake, 48–51 fibromyalgia, 62 first-degree relatives, with CD, 22 flour mixes, 91–93 folate, food sources, 49 Food Allergen Labeling and Consumer Protection Act (FALCPA), 45–46 food labels, ingredients to avoid, 45–46 fortified food, 48 friends and family dealing with, 122 eating with, 103–104 gelatin, 90 genetics celiac disease and, 21–23 dermatitis herpetiformis and, 35–37 GFD See gluten-free diet gliadin, 5, 17 gluten harmful forms, 5–6 what it does in dough, 90 gluten containing grains/ products, 5–6 gluten-free diet (GFD), 22, 29 challenges, 113–114 cross-contamination of grains, 44 and dermatitis herpetiformis, 36–37 diet card, 97 eating with friends and family, 103–104 educating family and friends, enriched/fortified foods and, 48 fiber, 48–51 food diary, 118 friends and family, 85–86, 103–104 grains and starches, safe, 44 healing the body, 114 health and, 43–53, 114–116 ingredients to avoid, 5–6, 46 kitchen, 82–89 essentials, 90–93 lifestyle, 118–119 medications and, 125–133 the mind and, 119–120 nutrition, 48 obesity and, 114–115 physician follow-up, 116–118 restaurant dining, 97–105 the spirit and, 121–124 vitamins and minerals, 53 weight loss on, 114 gluten-free foods, 114–115 Gluten-Free Food Service Management and Training Program (GFFS), 102 Index 214 Gluten-Free Gang, 39, 66 typical meeting of, 67–71 gluten-free menus, 98–99 Gluten-Free Restaurant Awareness Program, 102 Gluten Intolerance Group, 109 gluten-sensitive enteropathy (GSE), 34 See also celiac disease (CD) gluten sensitivity “point of care” tests for, 136 grains and startches, gluten free, 44–45 GSE See gluten-sensitive enteropathy healthy diet, 114–116 herpetiformis, 33 hordein, IBS See irritable bowel syndrome IgA tissue transglutaminase (tIG) test, 15 immunofluorescence, 35 immunoglobulin A (IgA), 20 infertility and pregnancy, 58–59 inflammation, 56 iron, food sources, 49 irritable bowel syndrome (IBS), 16 kaolin, 132 kitchen, for gluten-free diet, 82–83, 85–86 baking GF breads, 93–94 breaded and fried dishes, 96 buns, 94 cakes, 94–95 CD safe zone, 86–89 cookies, 95 cooking GF, 95 eating, for health, 96 essentials, 90–91 flour mixes, 91–93 gluten, replacing in recipes, 90 gravies and thickeners, 96 puddings and pie fillings, 95 lactose, 51 lactose intolerance, 51–52, 59 lactose-restricted diet, 52 larazotide acetate, 136 leaky gut See permeable gut lesions, scaly skin, 10 liver disorders, 61 Marsh Classifications, 21 medications determining gluten-free status, 127 excipient ingredients in, 131–133 gluten in, 125–131 menopause, 59 mental outlook dealing with self, 121–124 and prayer, 123–124 microscopic colitis, 62–63 National School Lunch Program, 80, 81 NCGS See non-celiac gluten sensitivity neurologic disorders, 59–60 niacin, food sources, 50 non-celiac gluten sensitivity (NCGS), 15–16 nonresponsive celiac disease (NRCD), 63 nutrients, food sources, 49–50 oats, gluten free, 44 Official Journal of the European Union, 111 permeable gut, 56, 114 “point of care” tests, for gluten sensitivity, 136 Celiac Disease 215 polyols See sugar alcohols potato starch, 91 pregnancy, 58–59 Prescription For Living (Siegel), 120, 121, 123 public awareness, 110–111 RCD See refractory celiac disease recipes angel pie, 172–173 bean salad, 162–163 biscuit mix, 165–166 bread, soft white, 170–171 bread, West Tennessee corn, 171–172 breakfast brunch casserole, 145–146 broccoli salad, 163 cake, deluxe buckwheat almond, 174–175 cake, easy flourless chocolate, 175–176 chicken, Jamaican jerk, 156–157 chicken ’n broccoli pie, 155–156 chicken nuggets, crunchy, 153 Chinese corn soup, 160 cole slaw, 164 buckeyes in winter, 173–174 corn bread, West Tennessee, 171–172 corn pancakes, 146–147 crackers, cheese, 166–167 early wake-up call, 147 eggplant parmesan, 153–154 enchiladas, chicken, 151–152 English muffins, 147–148 flour mix, 149 fruit fluff, 177 fruit salad, 176–177 fry magic, 144 gluten-free and dairy-free pancakes, 148–149 graham crackers, 168–169 lasagna, 155 lasagna, polenta, 157–158 minute chocolate mug cake, 178 muffins, banana nut, 164–165 muffins, chocolate, chocolate chip, 167 pancakes, corn, 146–147 pancakes, Sunday morning, 149 peanut butter fudge, 179 pizza, corn tortilla, 152–153 pork, sweet and sour, 159–160 potato soup, 161 quiche, spinach, 158 salad, chicken, 152 salad, easy fruit, 176–177 salad, million dollar, 177–178 salad, spring mix, 159 sandwich buns, 169–170 shake-n-bake, 143–144 spinach casserole, aunt carol'’s, 150 spinach pie, 158 thick crust pizza dough, 144–145 tortilla soup, 161–162 waffles, Sunday morning, 149 refractory celiac disease (RCD), 63 Rehabilitation Act of 1973, 80 restaurants children, 105 contamination, 101 cook versus chef, 98 diet card for, 97 national chains with gluten-free menus, 98–99 planning ahead, 105 reading the menu, 100–101 riboflavin, food sources, 50 rice flour, 90 safe zone in kitchen, 86–90 saponification, of fats and oils, 131 schizophrenia, gluten sensitivity, 17 Index 216 schools and children with celiac disease, 79–80 secalin, shellac, 132 Sjögren’s syndrome, 63 small intestine, destruction of villi, snacks for children, 81–84 soy flour, 91 starches and grains, gluten free, 44–45 sugar alcohols, 128 support groups, 66–71 sweet rice flour, 91 symptoms of celiac disease, 9–11 neurologic, 59–60 thiamin, food sources, 49 United States Department of Agriculture (USDA), 45–46 U.S Food and Drug Administration (FDA), 125 gluten free, 46–47 vegetables, gluten free, 48 villi, 5, 6, destruction of, 1, 8, 15, 17, 34 healing of, 22–23 Marsh Classifications and, 21 vitamin B12, food sources, 50 vitamins and minerals food sources, 49–50 supplements, 53 weight loss, 114 wheat allergy, 16 wireless capsule endoscopy, 21 xanthan gum, 90 Celiac Disease About the Authors Sylvia Llewelyn Bower, RN, lives with celiac disease, has been a practicing nurse for 50 years, and has been certified in Nursing Administration and as a Case Manager She has participated in the Gluten-Free Gang, one of the first celiac disease support groups, for over 16 years She has been a member of the Ohio Nurses Association and has spoken multiple times at the National Annual Celiac Conference She is the author of What Nurses Know…Gluten-Free Lifestyle and has published articles in a variety of media outlets including the Gluten Intolerance Group Magazine Mary Kay Sharrett, SM, RD, LD, CNSD, is a clinical dietitian at Columbus Children’s Hospital in Columbus, Ohio She is the clinical liaison to the Columbus Children’s Hospital Gluten-Free Gang Support Group Steve Plogsted, PharmD, is a pharmacist at Columbus Children’s Hospital in Columbus, Ohio He specializes in the prescription and over-the-counter medication needs of patients with celiac disease He has spoken at n umerous regional and national conferences on the topic of m edication and the celiac patient [...]... the gluten in your daily diet affects your body SELF-ASSESSMENT TO EVALUATE FOR CELIAC DISEASE Always present Occasionally Never GENERALIZED SYMPTOMS Fatigue Headache Joint pain Hair loss Heart palpitations (continued) Chapter 1 – What Is Celiac Disease? 12 SELF-ASSESSMENT TO EVALUATE FOR CELIAC DISEASE (continued) Always present Occasionally Never Shortness of breath Iron deficiency anemia Weight... AUTOIMMUNE DISEASES Fibromyalgia Hypothyroidism Sjögren’s syndrome Multiple sclerosis Lupus erythematosus Insulin-dependent diabetes (type I) Celiac Disease 15 Celiac Disease vs Non -Celiac Gluten Sensitivity The large increase, interest, and use of the GFD has had a profound effect on the gluten-free world The GFD has become popular and for many has become a way of life, whether they have a diagnosis... entire body may show symptoms because it is not receiving enough fuel to function The age of onset varies from infancy to the elderly, and the symptoms can be very subtle or obvious An infant may show symptoms when he or she is introduced to grains at an early age The symptoms may include diarrhea, constipation, foul-smelling stools, fatigue, slow growth pattern, irritability, and even a swollen belly from... deficiencies Fibromyalgia (continued) Chapter 1 – What Is Celiac Disease? 14 SELF-ASSESSMENT TO EVALUATE FOR CELIAC DISEASE (continued) Always present Occasionally Never Low calcium Joint pain CHILDREN TWO AND ABOVE Diarrhea Constipation Short stature Delayed puberty Diabetes type I Down syndrome Delayed growth INFANTS Chronic diarrhea Swollen belly Weight loss Pain Failure to thrive Down syndrome OTHER... individuals with Turner syndrome, and those with Down or Williams syndromes Self-Assessment Use this assessment to help identify your symptoms and determine if you should see your doctor for a diagnosis of CD If you have three of these symptoms in one category or ten on the whole assessment, you should ask your d octor for a celiac profile test At that point, do not stop eating gluten Your doctor will need... CD may not know they have the disease and exhibit no symptoms and as many as 60% of people with CD may exhibit non-classic symptoms The classic signs are fatigue, listlessness, diarrhea, and weight loss If any of these persist for more than a few months, your doctor will usually order a blood test The most common result of such testing is iron-deficiency anemia This anemia is caused by the body not... Increased gas after eating Bulky or lose stools Irritable bowel SKIN Itchy rash on elbows, knees Blistering rash NERVOUS SYSTEM Numbness and tingling of feet and hands Difficulty with balance Depression Anxiety Behavioral changes (continued) Celiac Disease 13 SELF-ASSESSMENT TO EVALUATE FOR CELIAC DISEASE (continued) Always present Occasionally Never REPRODUCTIVE SYSTEM Infertility Still birth Recurrent... grains causes the body to produce endomysial antibodies (EMA) An antibody, also known as an immunoglobulin (Ig), is a large Y- shape p rotein used by the immune system to identify and neutralize foreign objects There are two varieties of EMA antibodies, EMA IgA and EMA IgG These antibodies create an inflammatory process that destroys the villi (Figure 1-1) Previously, this Celiac Disease 7 Stomach Liver... can make life with celiac disease seem all the more enjoyable Ivor Hill, MD Medical Director Celiac Disease Center Nationwide Children’s Hospital Columbus, Ohio Celiac Disease Preface This book is written in the sincere attempt to offer new and vital information to individuals diagnosed with celiac disease (CD) or non -celiac gluten sensitivity (NCGS) Knowledge will set us free Family members and health... specific for celiac disease The history of CD is still being written today as new research continues There is much we still don’t know about this disease The evolution of grains, the environment, and genetic factors all play a role It’s important to remember that CD is not a new disease, even though recent increases in familiarity may make it seem so The more informed that you are about the history of CD,