Ask Shelley Case: My Child Was Diagnosed with Celiac Disease… Now What?
Q. My child was just diagnosed with celiac disease and learning about the gluten-free diet is overwhelming. Where do I begin and what resources are available to help us?
A. Learning about celiac disease and how to eliminate gluten can be very challenging for both the child and family, especially in the beginning. Start slow and take it one day at a time! “One of the most important and effective steps you can take to equip your child to live gluten-free is to empower them with good self-esteem and the skills needed to make independent gluten-free food choices in and out of the home” says dietitian Nancy Patin Falini. “Instill in your child the appeal of being unique while dispelling the myth of needing to be like everybody else.” Fortunately there are many resources and groups that can help you on this new gluten-free journey…
See a Registered Dietitian
The first essential step is to consult a registered dietitian with expertise in celiac disease. The dietitian will do a complete nutritional assessment, provide detailed information about celiac disease and the gluten-free diet, as well as develop an individualized meal plan. Practical information about label reading, shopping, recipes, substitutions, preventing cross contamination, eating away from home and traveling will also be covered in the initial and follow-up visits. To locate American dietitians specializing in celiac disease see http://www.glutenfreedietitian.com/newsletter/dietitians-specializing-in-celiac-disease/ The Canadian Celiac Association has a list of celiac chapters that have dietitian advisors. Contact the local celiac group at http://www.celiac.ca/chapters.php
Join a Celiac Support Group
A number of national celiac support groups and their local chapters offer information and have regular meetings to help individuals and family members. For links to the American and Canadian groups see www.glutenfreediet.ca/groups.php
There is a special support group for parents, families and friends of kids with celiac disease or gluten intolerance called R.O.C.K. (Raising our celiac kids). It was founded by Danna Korn after her son was diagnosed with celiac disease in 1991. For more information or to locate a R.O.C.K. group near you, contact Rock@celiackids.com
Seek out Practical Resources
The Gluten-Free Diet: A Comprehensive Resource Guide by dietitian Shelley Case is a 368 page book filled with detailed information about the gluten-free diet. It includes a listing of foods and ingredients allowed, to avoid and question; gluten-free labeling regulations; as well as meal plans, recipes, cooking hints, substitutions, nutrition information, cross contamination, eating out, over 3100 gluten-free specialty products, a directory of more than 270 companies, listing of cookbooks, books, websites and other helpful resources. See www.glutenfreediet.ca/overview.php
Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children by Danna Korn provides parents with advice and specific strategies on how to deal with the diagnosis, cope with emotional challenges, and help their child develop a positive attitude. Includes practical information on menu planning, shopping, food preparation, recipes and eating outside the home (e.g., birthdays, restaurants, camps, vacations). Available from www.amazon.com
Dietitian Nancy Patin Falini’s Gluten-Free Friends: An Activity Book for Kids is an illustrated book for children ages 4-11 years. The book features two friendly kids who explain what gluten is, describe how gluten makes them sick and which foods to avoid, and how to make healthy food choices. Easy-to-follow instructions for parents and caregivers help guide children through learning activities and explore their thoughts and feelings about gluten-free living. Available from www.savorypalate.com
Children’s Hospital Boston has developed a 2 hour DVD entitled Raising Your Celiac Child: Guidelines for a Gluten-Free Life. It includes 12 interactive modules with practical advice on celiac disease, lifestyle management and emotional support. See www.childrenshospital.org/celiac
Three other wonderful illustrated story books for children are:
• No More Cupcakes & Tummy Aches: A Story for Parents and Their Celiac Children to Share by Jax Peters Lowell
• Eating Gluten-Free with Emily: A Story for Children with Celiac Disease by Bonne Kruszka
• How I Eat Without Wheat by Karen Fine
Sheri Sanderson has written a cookbook for kids called Incredible Edible Gluten-Free Foods for Kids. Features 150 family-tested recipes, general food preparation tips, baking substitutes, as well as an overview of celiac disease and the gluten-free diet, tips for dealing with daycare and schools, and resources.
Wheat-free Gluten-Free Cookbook for Kids and Busy Adults by Connie Sarros has 198 easy recipes along with a chapter devoted to safe kitchen craft projects for kids of all ages. See http://gfbooks.homestead.com/kids.html
The American Celiac Disease Alliance has practical guidelines and resources to help families navigate the school lunch program. See http://americanceliac.org/for-families/school-lunch-faq/
Food allergies, sensitivities and celiac disease can be tough on a kid. Childhood traditions like trading sandwiches in the lunchroom, celebrating classroom holidays with cookies and treats, and sharing birthday cake with friends are often off-limits or require diligent oversight in order to be safe. Whether managing their unique needs leaves kids feeling isolated or helps them build self-confidence has a lot to do with how they are taught to view their situation.
Ask Shelley Case is a feature of BeFreeForMe.com. It is published the second Tuesday of each month. Shelley Case is a Registered Dietitian, Consulting Dietitian, Speaker and Author of Gluten-Free Diet: A Comprehensive Resource Guide. Visit Shelley and more glute-free tips at: www.glutenfreediet.ca
November 10th, 2009 at 7:32 am
This is a very good answer that points a newly diagnosed person with celiac disease in the right direction. Basically, it can apply also to adults. I’m celiac and I’m forwarding your website to a friend who has been recently diagnosed. Thanks for your informative and reassuring site.
November 10th, 2009 at 11:27 am
Our son, now almost six, was diagnosed when he was three. It was earth shattering – for no other reason than we’d never heard of Celiac Disease! Our pediatrician was amazing and helped get us connected. However we move out of state shortly after that, and needed to revamp our resources.
The best two things we did were: (1) find and meet with our local R.O.C.K chapter. Having other parents with Celiac kids offer advice from their experience was incredibly beneficial, and (2) we read Shauna Ahern’s Gluten Free Girl book. This might sound strange, and we read a bunch of other books as well, but her take on gluten-free life was the eye opener we needed to feel good about the path we were about to embark on and helped us let go of feeling like he was going to be “left out”.
Our other suggestion, having done it, is to slowly purchase food and cookbooks. We went hog wild and ordered about $70 in books from Amazon and LOTS of GF products from our local store. We wouldn’t suggest that at all! Get a few books from the library, including those with recipes, and browse them. Then make slow purchasing decisions from there. As far as food goes, don’t buy any one product in bulk until you’ve tested it out and made sure your son/daughter likes it.
Finally, seek help from the GF community. LIke Shelly Case mentioned above there are so many resources – one of which is all the blogs that focus on GF lifestyles! They can be miracle workers when you need advice, or the right recipe so you can make your favorite sugar cookies for the holidays!
Good luck! It does get so much easier!!
November 10th, 2009 at 3:40 pm
My daughter and 6-year old grandson are also on a GF diet. When he was in Kindergarten, she kept treats at school with the teacher for Alex to eat when the other children brought in snacks for the class and gave the teacher a list to look for items that might contain gluten. This year, at the parent-teacher group meeting for first-graders before school began, she gave the other parents a memo regarding Alex’s special diet needs and asked that they get in touch with her when they plan to bring a treat to school so that she can make something as similar as possible so that Alex will not feel that he was being singled out. Some of the parents have even called her when they are bringing a treat in and asked for the necessary information so that they could make GF treats for all the children.