"Why does such a harmless word feel so overwhelming? What am I going to feed my child? How will my child participate in all the "normal" childhood experiences when there is so much he can't eat? Why does everything revolve around food?"
These are all natural feelings to have after your child has been diagnosed with Celiac Disease. Believe it or not, the diet does get easier and your child will enjoy all the typical childhood experiences you have dreamed for him or her. So . . . Life won't be as convenient as it used to be, but your child and your whole family will be eating healthier because of this diagnosis. The Junior League Family Resource Center has many books, cookbooks, video tapes, articles and websites available to help you on your journey. This website also provides you with an extensive list of local, state and national support groups to help you adjust to this life changing experience. In time, you will learn how to shop and cook gluten-free. Life will become routine and "normal" again -- and your child will be healthy and happy.
By Janet Lowery, Parent of 4-year-old John
2002
What is Celiac Sprue?
Celiac disease (also known as celiac sprue) is an intestinal disorder. It is caused by an allergic-like reaction of the body to a protein (gluten) that is found in some grains (rye, wheat, and barley). This reaction of the body results in injury to the small intestine, which prevents the normal digestion and absorption of food. Malabsorption from the damaged intestine can create malnutrition and vitamin deficiencies leading to other illnesses.
Symptoms which suggest celiac disease can often be very vague. In adults, this could be diarrhea or anemia. In children, failure to grow or develop appropriately, diarrhea, or distension of the abdomen are most common.
Recent studies show the prevalence of celiac disease in the U.S. to be as common as 1 in 150-250 people. It often goes undiagnosed and misdiagnosed. Celiac disease can be a diagnostic challenge, sharing symptoms with many other conditions. The standard test to make the diagnosis is a biopsy of the small intestine. This is done under mild sedation through a scope, which goes through the mouth. This is not complicated. Recently, however, new blood tests have been developed which makes screening for celiac disease even easier.
Treatment is a special diet free of grain gluten and oats, which is usually effective in complete resolution of symptoms. Because damaged villi can create lactose intolerance, sometimes lactose (milk sugar) may need to be avoided initially for a few months. The diet requires dedication to zero tolerance of gluten for life.
By Bill Long, MD
Old Harding Pediatric Associates
Team Reviewers and Monitors
Bill Long, MD
Old Harding Pediatric Associates
Nashville, Tennessee
For current activities and information on support group meetings, please check out our website at http://www.nashvilleceliacs.org
New book addition: Recognizing Celiac Disease; Signs, Symptoms, Associated Disorders and Complications has been donated by CSA Nashville and is available in the Family Resource Center Library. This is a comprehensive resource for professionals and also for individuals wishing an in-depth look at celiac disease.
Related Vanderbilt Links
Division of Gastroenterology and Nutrition
The Division of Gastroenterology and Nutrition offers a full range of clinical services; basic research and laboratory studies; and training programs as they relate to a wide variety of pancreatic, liver, intestinal, and nutrition disorders.
Nutrition Clinic
The Vanderbilt Nutrition Clinic is a comprehensive counseling center with licensed dieticians who provide medical nutrition therapy for diagnosis-specific diet problems and weight control.
Against the Grain: The Slightly Eccentric Guide to Living Well Without Gluten or Wheat By Jay Peters Lowell New York, NY: Henry Holt & Co., 1995. Category: Specific Chronic Health Condition
A comprehensive guide that not only covers coping with celiac disease but also how to live well. Includes strategies and travel tips.
celiac disease By Peter H.R. Green New York, NY: Celian Disease Center at Columbia U Med Ctr, Rec'd 2009. Category: Specific Chronic Health Condition
The restrictions of the gluten-free diet at a difficult adjustment for a child. The result is a kind of "emotional earthquake.", with repercussions felt virtually everyday by the child, the family, and everyone else involved in his or her care. This brochure will a helpful guide.
Celiac Disease - A Hidden Epidemic By Peter H.R. Green, MD, Rory Jones New York, NY: HarperCollins, 2006. Library of Congress Number: RC862.C44G74 2006 Category: Specific Chronic Health Condition
This book is intended to generate informed patients who know what questions to ask of their physicians and how to understand the answers. The personal stories and diagnoses throughout this book are based primarily on the patient population seen at the Celiac Disease Center at Columbia University.
Celiac Disease Nutrition Guide By Tricia Thompson Chicago, IL: American Dietetic Association, 2006. Library of Congress Number: RC 862.C44 T467 2006 Category: Nutrition/Weight Management
This "survival guide" provides essential information for people diagnosed with celiac disease, an intolerance to gluten.
Food Allergy Field Guide: A Lifestyle Manual for Families By Theresa Willingham Littleton, CO: Savory Palate, Inc., 2000. Category: Specific Chronic Health Condition
“Eat differently without seeming different” is the goal of this positive, upbeat field guide to helping your child — and your child’s other caregivers – manage food sensitivities to wheat, gluten, dairy, eggs, corn, peanuts, soy, and other common food allergens. The book includes information on how to read food labels, grocery shopping and eating out, and dealing with emotional, social and psychological issues that children with food allergies may encounter. The book offers tips to parents on helping their child with food allergies enjoy parties, field trips, and outings.
Gluten-Free Cookies By Jeanne Basye Phoenix, AZ: What No Wheat Enterprises, 2008. Category: Nutrition/Weight Management
From childhood the author loved to bake cookies and specialized in this art. When her husband was diagnosed with a form of celiac disease she accepted the challenge of becoming a gluten-free household and continued baking cookies.
Gluten-Free Diet By Shelley Case Regina, Saskatchewan, Canada: Centex Books, 2001. Library of Congress Number: RM 237.86.C37 2006 Category: Nutrition/Weight Management
This book contains a wealth of information useful for everyone interested in an accurate resource for the gluten-free diet.
Gluten-Free Diet: A Comprehensive Resource Guide By Shelley Case Regina, Saskatchewan, Canada: Case Nutrition Consulting, 2001. Category: Specific Chronic Health Condition
A useful guide for gluten-free eating with lists of products, manufacturers, meal tips, and some recipes.
Gluten-Free Gourmet Cooks Fast and Healthy, The By Bette Hagman New York, NY: Henry Holt & Co., 1996. Library of Congress Number: RM237.86.R93 2000 Category: Nutrition/Weight Management
The author is an acknowledged leader in gluten and wheat-free cooking that can restore good eating to those who must follow this diet.
Gluten-Free Kitchen, The By Roben Ryberg Roseville, CA: Prima Publishing/Random House, 2000. Library of Congress Number: RM237.86.R93 2000 Category: Nutrition/Weight Management
An excellent source of gluten-free recipes that taste great and are easy to prepare. This book offers a wealth of tips and helpful hints for successful gluten-free cooking.
Incredible Edible Gluten-Free Food for Kids: 150 Family-Tested Recipes By Sheri L. Sanderson Bethesda, MD: Woodbine House, 2002. Library of Congress Number: RC862.C44 S26 2002 Category: Nutrition/Weight Management
This cookbook can save families time, money, and anguish by providing clear guidelines for selecting ingredients and preparing food safely for a child on a gluten-free diet. It is the first cookbook to provide delectable gluten-free recipes formulated especially for children. Readers can choose from a wide array of recipes that cover every meal of the day, as well as snack-time. Numerous recipes take 30 minutes or less to make and are so easy parents can involve their child in the preparation. In addition to food recipes, there are tips for cooking substitution, entertaining, a list of resources, as well as a detailed trouble-shooting chart for the gluten-free baker. Sanderson also offers advice on how to deal with situations outside the home that may compromise a child’s diet, such as peer-pressure and day care.
Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-free Children By Danna Korn Bethesda, MD: Woodbine House, 2001. Library of Congress Number: RJ456.C44 K67 2001 Category: Specific Chronic Health Condition
An informative first book specifically about celiac disease in the young child. This book helps with issues like understanding your child’s behavior and the challenge of finding day care. Covers strategies for coping with celiac disease and gives advice and ideas for dealing with medical, diet, and behavioral issues. Also includes a resource section for a wide variety of products and services.
Living Gluten-Free For Dummies By Danna Korn Hoboken, NJ: Wiley Publishing, 2006. Library of Congress Number: RM237.86K67 2006 Category: Nutrition/Weight Management
For individuals with a wheat allergy, gluten intolerance, celiac disease, or for readers who want to learn about the benefits of a diet free of wheat, barley, and rye.
New Ultimate Guide to Gluten-Free Living, The By Peter H.R. Green New York, NY: Cekuac Disease Center at Columbia University, 2006. Category: Nutrition/Weight Management
This guide was published to help you navigate the gluten-free life with ease, confidence, and lots of enjoyment.
Recipes for the Specific Carbohydrate Diet By Raman Prasad Beverly, MA: Quayside Publishing Press, 2008. Library of Congress Number: RC862.I53 P73 2008; C:2 Category: Nutrition/Weight Management
Recipes that are grain-free, lactose-free, and sugar-free. Nutritional help for IBD, celiac disease, autism, cystic fibrosis and other diets.
Recognizing Celiac Disease By Cleo Libonati Fort Washington, PA: Gluten Free Works Publishing, 2007. Library of Congress Number: RC862.C44L53 2007 Category: Specific Chronic Health Condition
This comprehensive and easy-to-use resource guide will go a long way in helping folks restore their health and regain their lives. This well-researched reference manual is recommended to healthcare professionals and patients alike.
Special Diet Celebrations: No Wheat, Gluten, Dairy, or EggsWheat-free Recipes and Menus: Delicious Dining Without Wheat or Gluten By Carol Fenster Littleton, CO: Savory Palate, Inc. Category: Specific Chronic Health Condition
Celebrate Special Occasions with food that everyone will enjoy! Birthdays, graduation, parties, picnics . . . some of life’s best moments include dining with friends and family. Eat your favorite dishes at home or at any special occasion — just change the ingredients with creative substitutions. You can customize each wheat-free, gluten-free recipe to also omit dairy and eggs or use other sweeteners besides sugar. Recipes emphasize fresh, wholesome ingredients that are safe for your diet.
Wheat-Free, Gluten-Free Cookbook for Kids and Busy Adults By Connie Sarros New York, NY: McGraw Hill, 2004. Library of Congress Number: RM237.87.S268 2004 Category: Nutrition/Weight Management
Provides a perfect opportunity to learn to cook gluten-free and eat well with recipes that break the age barrier.
Wheat-Free, Worry-Free: The Art of Happy, Healthy Gluten-Free Living By Danna Korn Carlsbad, CA: Hay House, 2002. Library of Congress Number: RM237.87.K7 2002 Category: Nutrition/Weight Management
Danna Korn’s second book encourages an optimistic outlook about gluten-free living and provides lots of helpful tips and recipes. The book also gives ideas for traveling and eating out, and it considers the psychological issues of dietary restrictions. One of the most helpful features of this book is the Products and Services Guide that gives the contact information for companies that make wheat-free and gluten-free products.
Videos
CELIAC - DELICATE DIET Nashville, TN: Middle Tenness Celiac Chapter #76 Category: Specific Chronic Health Condition
Channel 5 Meryl Rose interview with Cheryl Chamberlain
Fun on a Gluten Free Diet By Mary Kay Sharrett, R.D The Gluten Intolerance Group Length: 60 minutes Library of Congress Number: RC862.C44 F86 Category: Nutrition/Weight Management
Pediatric Dietician, Mary Kay Sharrett presents the topic of Gluten-Free diets in lecture form with an overhead projector. Emphasis is placed on the food guide pyramid and issues such as celiac disease, support groups, concerns with gluten-free dieting, ingredients to avoid, gluten-free grains and starches, vitamin deficiencies, and family involvement. The audience asks questions and recieves immediate feedback.
Gluten Free Playtime (adult portion) By S. Sanderson The Gluten Intolerance Group, 2000. Library of Congress Number: RC862.C44 S263 2000 Category: Nutrition/Weight Management
This presentation by a gluten-free recipe developer and mother of a child with celiac disease begins with ideas of gluten-free “play recipes” like play dough and soap that can be used with children with celiac. Sanderson provides parents with tips for how to avoid contaminating gluten-free foods with gluten foods and for choosing child care, and she points out things to consider when your child enters school and when participating in activities like communion at church or sports. The first section of this video is oriented towards helping children with celiac understand the importance of following their diet and what to do when they are tempted not to.
Pediatric Presentation and Treatment of CD (Celiac Disease) By A. Fasano, M.D. The Gluten Intolerance Group, 1995.
Dr. Fasano, professor of gastroenterology at the University of Maryland School of Medicine, explains celiac disease from a medical perspective. He discusses the diagnosis and treatment of the disease, covering genetic tendencies, possible causes, and the prevalence of celiac. He also talks about conditions that can often accompany celiac, and he explains the most current research in the field as of the mid-1990s.
Websites
Basic Information about Celiac Disease http://www.enabling.org/ia/celiac Author: Enabling Support Foundation, a non-profit organization whose mission is to provide the technological tools to empower individuals with disabilities to maximize their inherent potential.
The site has resources for individuals with celiac disease, such as recipes, newsletters, and support groups along with basic information and frequently asked questions about the disease. The site also includes the St. John’s listserve database.
Celiac Disease Foundation http://www.celiac.org Author: The Celiac Disease Foundation is a 501(c)(3) non-profit, public benefit corporation dedicated to providing services and support relating to Celiac Disease and Dermatitis Herpetiformis, through programs of awareness, education, advocacy and research.
The site includes information on symptoms, causes, diagnosis, treatments. Also includes information on screenings, support groups (in California), and a quarterly newsletter.
Celiac Sprue Association/United States of America, Inc. http://www.csaceliacs.org Author: Celiac Sprue Association/United States of America, Inc.
This site has information on the CSA, diagnosis & treatment, diet, and recipes. Also includes information on related conditions, medication, support groups, and coping, plus a newsletter.
Safe and forbidden food lists for gluten-free diets. This is a part of the multi-award winning site www.celiac.com. The site provides extensive links and shopping guides, as well as other valuable information.
Informative articles on celiac disease range from a detailed medical description of the disease to a list of commonly asked questions. Especially helpful are pictures of side effects which may accompany celiac, information on the prevalence of the disease, and the correlation of celiac with other diseases.
A wide array of delicious gluten-free and wheat-free gourmet baking mixes, prepared rolls, breads and baguettes, cookies, snacks, pasta, vitamins, baking and cooking accessories, “baking from scratch” ingredients, cookbooks, gluten-free recipes.
Gluten Intolerance Group of North America http://www.gluten.net Author: Gluten Intolerance Group of North America
Site includes information on celiac and related conditions, including symptoms, diagnosis, treatment, and diet. Information on food, cookbooks, and newsletters are also included.
Informative articles on celiac disease range from a detailed medical description of the disease to a list of commonly asked questions. Especially helpful are pictures of side effects which may accompany celiac, information on the prevalence of the disease, and the correlation of celiac with other diseases.
Miss Roben's is a vendor of specialty foods, including foods for those with multiple food allergies. The website also has a "Free Of" search to find foods or products that are free of allergens like gluten, dairy, etc.
R.O.C.K.: Raising our Celiac Kids http://www.celiackids.com Author: Danna Korn, founder of R.O.C.K. (Raising Our Celiac Kids) support group and author of Kids with Celiac Disease: A Family Guide to Raising Happy, Health Gluten-Free Children.
This site is for families and friends of gluten-free kids. Raising kids on a gluten-free diet presents unique challenges and situations, and this site is filled with valuable information and resources to help you deal with them.
Informative articles on celiac disease range from a detailed medical description of the disease to a list of commonly asked questions. Especially helpful are pictures of side effects which may accompany celiac, information on the prevalence of the disease, and the correlation of celiac with other diseases.
This site has an article called College Bound for Celiacs. Excerpts from the Houston Celiac-Sprue Support Group newsletter: Nov. 1999 THE SPRUE-NIK PRESS: Published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan, Volume 9, Number 2, February 2000.
Community Services
Support Groups
Jackson Area Celiac Support Group Methodist Le Bonheur Healthcare, 367 Hospital Blvd Jackson, TN 38305
Meetings: Third Thursday of each month at 6pm. Contacts:
Joan Chance, Chairperson 731.668.7468 jkchance@bellsouth.net;
Jacquleine Maxwell 731.661.9589 jacqueline.maxwell@att.net;
Julie Plunk 731.661.2179
The Nashville Celiac Sprue Support Group, Group # 76, is affiliated with the Celiac Sprue Association, USA(CSA). The group meets every other month to support a gluten-free lifestyle.
Contacts:
Dr. Herschel Graves 615.352.5442 hagraves@comcast.net
R.O.C.K. (Raising Our Celiac Kids) is a free support group for parents, families and friends of kids on the gluten-free diet because of celiac disease, gluten intolerance, autism, ADD/ADHD, allergies, or personal preference. It is open to all ages.
R.O.C.K. (Raising Our Celiac Kids) is a free support group for parents, families and friends of kids on the gluten-free diet because of celiac disease, gluten intolerance, autism, ADD/ADHD, allergies, or personal preference. It is open to all ages
R.O.C.K. (Raising Our Celiac Kids) is a free support group for parents, families and friends of kids on the gluten-free diet because of celiac disease, gluten intolerance, autism, ADD/ADHD, allergies, or personal preference. It is open to all ages.
Western Kentucky Celiac Support Group Paducah, KY
Contacts:
Rose Mary Mueller 270.527.8330 norbert1@hcis.net;
Annabelle Beverly apbeverly1@hotmail.com; Joyce Busse tubbs@apex.net
Resources for: Children and Teens (according to age range)
Gluten-Free Cookies By Jeanne Basye Phoenix, AZ: What No Wheat Enterprises, 2008. Category: Nutrition/Weight Management
From childhood the author loved to bake cookies and specialized in this art. When her husband was diagnosed with a form of celiac disease she accepted the challenge of becoming a gluten-free household and continued baking cookies.
0-0 years
New Ultimate Guide to Gluten-Free Living, The By Peter H.R. Green New York, NY: Cekuac Disease Center at Columbia University, 2006. Category: Nutrition/Weight Management
This guide was published to help you navigate the gluten-free life with ease, confidence, and lots of enjoyment.
0-0 years
Wheat-Free, Gluten-Free Cookbook for Kids and Busy Adults By Connie Sarros New York, NY: McGraw Hill, 2004. Library of Congress Number: RM237.87.S268 2004 Category: Nutrition/Weight Management
Provides a perfect opportunity to learn to cook gluten-free and eat well with recipes that break the age barrier.
3-7 years
Eating Gluten-Free with Emily By Bonnie J. Kruszka Bethesda, MD: Woodbine House, 2004. Library of Congress Number: RJ456.C44K76 2004 Sub-Category: Nutrition/Weight Management
This book provides many answers to the question a child asks when he/she first become aware of their condition. While the lifestyle changes that a diagnosis of celiac disease brings can at first seem overwhelming, the increased availability of gluten-free products, better food labeling, and growing awareness of celiac disease makes management of a gluten-free diet more workable than ever before.
4-8 years
How I Eat Without Wheat By Karen Fine Bloomington, IN: AuthorHouse, 2007. Library of Congress Number: RC862.C44F56 2007 Category: Specific Chronic Health Condition
Every family who has a child with celiac disease, allergies, sensitivities-or a restricted diet of any kind-will enjoy the message and the lessons this informtative book.
5-8 years
Trouble That Jack Had, The By Jane Pintavalle, Diane :Pintavalle Milwaukee, WI: Friends of Celiac Disease, 2004. Library of Congress Number: RC862.C44P56 2004 Category: Specific Chronic Health Condition
A story of a little boy and his family as they cope with the diagnosis of celiac disease. As Jack and his family learn more about a gluten-free lifestyle they are pleased to discover all of the food he CAN eat.
7-13 years
Gluten-Free Friends: An Activity Book for Kids By Nancy Patin Falini Centennial, CO: Savory Palate, Inc., 2003. Library of Congress Number: RM237.86.F35 2003 Category: Nutrition/Weight Management Sub-Category: Nutrition/Weight Management
This delightful, innovative activity book is brimming with a wide variety of learning activities and easy-to-use educational techniques for children approximately ages 4 through 11. Through play, it is designed to promote a positive, fun team approach between the parent and child who has celiac disease or gluten intolerance.
Videos
5-10 years
Gluten Free Playtime By S. Sanderson The Gluten Intolerence Group, 2000.
The first 15 minutes of this video are oriented towards children with celiac disease. Sanderson discusses with a group of kids why they should follow their diet and how to deal with the pressure to eat foods containing gluten. She then teaches the group of kids how to make gluten-free (and therefore edible!) play dough. A discussion for parents follows.
6-0 years
CELIAC - DELICATE DIET Nashville, TN: Middle Tenness Celiac Chapter #76 Category: Specific Chronic Health Condition
Channel 5 Meryl Rose interview with Cheryl Chamberlain
R.O.C.K. (Raising Our Celiac Kids) is a free support group for parents, families and friends of kids on the gluten-free diet because of celiac disease, gluten intolerance, autism, ADD/ADHD, allergies, or personal preference. It is open to all ages.
R.O.C.K. (Raising Our Celiac Kids) is a free support group for parents, families and friends of kids on the gluten-free diet because of celiac disease, gluten intolerance, autism, ADD/ADHD, allergies, or personal preference. It is open to all ages
R.O.C.K. (Raising Our Celiac Kids) is a free support group for parents, families and friends of kids on the gluten-free diet because of celiac disease, gluten intolerance, autism, ADD/ADHD, allergies, or personal preference. It is open to all ages.
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All information on this website is for educational purposes only. Specific medical advice, diagnoses, and treatments can only be given by your personal health care professionals
