Ep 183 Resources for the Newly Diagnosed Family - a podcast by Sue Jennett: gluten free baker and podcaster
from 2021-07-28T10:30:05
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/
- 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 – acdnceliacpodcast@gmail.com
Baking Website – https://www.suesglutenfreebaking.com
Instagram - @suesgfbaking
YouTube - https://www.youtube.com/playlist?list=PLUVGfpD4eJwwSc_YjkGagza06yYe3ApzL
Email – sue@suesglutenfreebaking.com
Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com
Further episodes of A Canadian Celiac Podcast
Further podcasts by Sue Jennett: gluten free baker and podcaster
Website of Sue Jennett: gluten free baker and podcaster