Ep 183 Resources for the Newly Diagnosed Family

I spoke with Lisa Rigney on Episode 180 of the podcast about what happens when a child gets diagnosed.  Realizing it actually becomes a diagnosis for the entire family, I asked Lisa back to talk about some of the resources she found and used after her daughter was diagnosed.  Recently, Lisa wrote an article for the newsletter of the Edmonton Chapter of the Canadian Celiac Association listing the resources that she often recommends to families.  We look at her list and how she was able to benefit from becoming part of both local and virtual celiac communities.  Here is an extensive list of resources from Lisa's article.   Resources for parents of newly diagnosed children 2021 https://theceliacscene.com/canadian-celiac-association-growing-up-celiac-resource/ pdf This link provides you with information on how to help your child cope on the gluten free diet: https://www.celiacedmonton.ca/gluten-free-diet/helping-your-celiac-child-cope-with-the-gl uten-free-diet/ This is a great link covering a lot of topics including what questions to ask at restaurants, navigating birthday parties and how celiac disease affects a child at school: https://www.caringforkids.cps.ca/handouts/healthy-living/celiac-disease-and-your-child Check out this link for lots of useful information: http://fcrc.albertahealthservices.ca/health-information/library/information-prescriptions/cel iac/ This 6 page document from the AHS includes a list of foods to avoid and ones which are safe: https://www.albertahealthservices.ca/assets/info/nutrition/if-nfs-gluten-free-diet.pdf You will also find resources for teachers by clicking on this link: https://www.celiac.ca/living-gluten-free/children/ Click below for a fun article from Generation GF - Gluten free from A to Z article: https://mail.google.com/mail/u/2?ui=2&ik=239ea9609b&attid=0.1&permmsgid=msg-f:170 0303079945275889&th=1798b0a482a409f1&view=att&disp=inline Celiac Disease and important areas of nutrition to understand: Spotlight on fibre, folate, B12, calcium, Iron and Zinc. https://www.celiac.ca/wp-content/uploads/2018/08/Spotlight-on-Fibre_final.pdf https://www.celiac.ca/wp-content/uploads/2018/08/Increasing-your-Folate-Intake_final.pdf https://www.celiac.ca/wp-content/uploads/2018/08/Increasing-your-B12-Intake-final.pdf https://www.celiac.ca/wp-content/uploads/2018/05/CCA-Calcium-Tip-Sheet.pdf https://www.celiac.ca/wp-content/uploads/2018/05/CCA-Iron-Tip-Sheet.pdf https://www.celiac.ca/wp-content/uploads/2019/04/Zinc-Tip-Sheet.pdf To watch: The AHS Series: "Living with Celiac Disease - Celiac Disease - an overview" - module 1 https://youtu.be/Bul73e9maiY "Living with Celiac Disease - An introduction to gluten free foods" - module 2 https://youtu.be/WLj7Kv7vCJ8 Edmonton Chapter – Canadian Celiac Association www.Celiac.Edmonton.ab.ca Written by Lisa Rigney, Program Coordinator Published in the Edmonton Celiac Circular Summer Issue 2021 Resources for parents of newly diagnosed children 2021 "Living with Celiac Disease - living with the gluten free diet" - module 3 https://youtu.be/p19CyRP6VGw Suggested Webinars: The celiac team at the Hospital for Sick Children (SickKids) in Toronto Canada has launched 4 new interactive e-learning modules for patients and their families which are housed on the AboutKidsHealth website within The Celiac Learning Hub. The direct link to the modules is: Celiac disease: eLearning Modules Diagnosis and management of Celiac disease in children and young adults hosted by the CCA: https://www.youtube.com/watch?v=D1OycgdTzIs Food and nutrition for children & teens with CD/gluten disorders hosted by the CCA: https://youtu.be/fDt3b8ERLNM Beyond Celiac Town hall - a conversation with CHOP Celiac Centre: https://youtu.be/n8v1irzeyUo Youtube Videos: Nutrition fact labels - how to read - for kids - Dr Smarty https://www.youtube.com/watch?v=ylY0w04AAVk Teaching kids about reading food labels https://www.webmd.com/diet/video/kid-food-labels Understanding the Nutrition facts label - Cincinnati Children's hospital https://youtu.be/tB7BgszxLs8?t=99 Sadie's Gluten free tips https://www.youtube.com/watch?v=afM5EaYQ30k To listen: Podcasts: Check out Sue Jennetts's "A Canadian Celiac Podcast" which is a very informative podcast on all things CD related. https://acanadianceliacpodcast.libsyn.com/ Gluten Free Apps: Gluten Free 24/7 for double checking ingredients Find me Gluten Free for locating restaurants where you live or when you are travelling. Recommended books for caregivers: Gluten Free: The Definitive Resource Guide by Shelley Case Celiac Disease for Dummies by Ian Blumer and Sheila Crowe Recommended books for children: Mommy, What is Celiac Disease by Katie Chalmers Eating Gluten Free with Emily by Bonnie J Kruszka The Celiac Kid by Stephaine Skolmoski Adams Gluten Free surprise by Debbie Simpson Further Reading: https://theceliacscene.com/study-urges-universal-screening-celiac-disease-children/ https://theceliacscene.com/celiac-disease-genetic-risk-factor-testing/ https://theceliacscene.com/gene-test-celiac-disease-results https://theceliacscene.com/back-to-school-celiac-disease-gluten-free-gourmet/ https://www.schaer.com/en-ca/a/how-go-gluten-free-beginners Edmonton Chapter – Canadian Celiac Association www.Celiac.Edmonton.ab.ca Written by Lisa Rigney, Program Coordinator Published in the Edmonton Celiac Circular Summer Issue 2021 Resources for parents of newly diagnosed children 2021     Sue's Websites and Social Media – Podcast https://acanadianceliacpodcast.libsyn.com Podcast Blog – https://www.acanadianceliacblog.com Facebook - @acanadianceliacpodcast Twitter – CeliacPodcastCA Email – [email protected] Baking Website – https://www.suesglutenfreebaking.com Instagram - @suesgfbaking YouTube - https://www.youtube.com/playlist?list=PLUVGfpD4eJwwSc_YjkGagza06yYe3ApzL Email – [email protected] Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com