Ep 183 Resources for the Newly Diagnosed Family

Let’s start the blog with the show notes for this Episode –

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. I made as many of the links active as I could, some you may have to get to manually, but there’s lots here to choose from!

Resources for parents of newly diagnosed children 2021
https://theceliacscene.com/canadian-celiac-association-growing-up-celiac-resource/
● 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
“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:

1. Gluten Free 24/7 for double checking ingredients
2. Find me Gluten Free for locating restaurants where you live or when you are travelling.
   Recommended books for caregivers:
3. Gluten Free: The Definitive Resource Guide by Shelley Case
4. Celiac Disease for Dummies by Ian Blumer and Sheila Crowe
   Recommended books for children:
5. Mommy, What is Celiac Disease by Katie Chalmers
6. Eating Gluten Free with Emily by Bonnie J Kruszka
7. The Celiac Kid by Stephaine Skolmoski
8. 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

My Thoughts –

When I was diagnosed, there seemed to be plenty of resources to help me convert to a gluten free diet, deal with social situations and come to terms with my life-long diagnosis.  As I have mentioned here many times, within 6 months of my diagnosis, my five-yearold daughter was diagnosed. 

As a parent, you concentrate your energies on your children, that’s just human nature and motherly instinct.  I transferred everything I had learned about celiac disease and the gluten free diet into concepts she needed to work through her day-to-day life.  Needless to say, I was more comfortable having her at home where I could feed her with great care, than leaving to go to play dates, birthday parties and even school.

One way I chose to deal with her being out in the world was to get her a medic alert bracelet.  The bracelets don’t seem to be as common these days, but those many years ago, I had to jump through hoops to get her a bracelet to indicate she could not eat gluten.  The hoops involved registering her in an international data base in case she required medical assistance and was unconscious, a valuable extra of having the bracelet.  As she was only five, I taught her to point to her bracelet if someone wanted to give her food.  As suspected, adults who knew about her celiac, were wanting to give her safe food, and those who were unaware were scared off by the bracelet.  It worked well for us.  As she grew older, she was able to articulate her condition better and advocate for herself.

Fast forward to earlier this year.  Whenever I want to bounce an idea off someone, I contact Ellen Bayens of theceliacscene.com.  Ellen always has great words of wisdom.  We chatted and came up with ideas of resources that might be helpful to children with celiac and their parents.  Lots of brainstorming later (thanks for that, Ellen), and Celiac Kid Stuff was created. 

Celiac Kid Stuff is an online store featuring stickers that can be placed on items of gluten free food that go in a child’s lunch, get sent to school for a special class occasion, get left with a child at a birthday party, or even for carefully made gluten free items at bake sales.  There are many uses, but they all have one thing in common – Speaking Up Without Saying a Word!

Another cool thing on the store are wristbands for kids.  The wristbands, much like what I did for my daughter, say they are celiac and can’t eat gluten, but are way cooler, and more suited to the active lifestyle of busy kids.

If you are a parent or caregiver for a celiac child, or know someone who is, please check out the new online store CeliacKidStuff.com for some helpful stuff that make kids (and their parents) feel special.