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.

A Conversation with Jerry Bigam

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

It’s always special when I have a returning guest to the podcast.  I last spoke in person to Jerry Bigam during the “State of Celiac Symposium” organized by the Canadian Celiac Association in Toronto more than two years ago.  So much has happened since.  I was curious as to how our trusted gluten free businesses faired during the complete upheaval of the past 18 months.  Turns out Kinnikinnick was well positioned and took swift action to both maintain their direct to consumer base, and take advantage of the many changes that were taking place in our lives, including staying at home, having kids out of school and our reluctance to venture out for shopping.  Jerry has led Kinnikinnick through the past 18 months with a strong vision for the future, and for a commitment to celiac consumers.

Instagram – https://www.instagram.com/kinnikinnickgf/

Twitter – https://twitter.com/kinnikinnickgf

Facebook – https://www.facebook.com/KinnikinnickGF/

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 –

As I mentioned to Jerry in our conversation, the business of gluten free baking is more complex than traditional wheat baking.  The supply chains are not as deep and more investigation must be done into every ingredient used in a facility.  Covid was a test for any business.  

Some businesses were unlucky, through no fault of their own.  Maybe, signing a lease early last year on a retail space that saw little walk-in business for an extended period of time.  On the other hand, some businesses were lucky, again through no particular genius of their own, maybe deciding to downsize a business office space to make working from home an experimental option for some.  Covid impacted everyone, businesses and consumers alike. 

Many businesses were forced to close.  I’m afraid the extent of closures is still not yet known.  Others, like Kinnikinnick, were well positioned to weather a storm.  They did lose their cruise ship business, which was a blow, but because their products were “essential” for much of their consumer base, their innovation was well received and appreciated by paying customers.

I can’t for a moment suggest that Jerry, or anyone in management at Kinnikinnick could foresee a global pandemic, but the burden of operating an essential service business brings with it thoughts of how you might serve your customers through situations you hadn’t planned for.  I remember when I was operating my bakery, and SARS was something that was beginning to effect how Canadians went about their day-to-day business.  It was natural for me to consider how I would be able to prepare and sell my baked goods if suddenly restrictions were put in place.  Of course, I had no idea what restrictions would look like, but I knew I had a loyal following of customers that depended on me and my staff.  Its a big responsibility.

Clearly, some companies, and Kinnikinnick is certainly one of them, was quick to problem solve at the beginning of the pandemic with solutions that could evolve into practices that would efficiently meet the needs of their clients.  Hopefully, we’re coming out of the pandemic and it will be interesting to see what “pandemic solutions” remain with businesses to meet the evolving needs of their customers.  I, for one, will be paying close attention.    

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

On this episode I speak with food blogger and recipe developer Cinde Little, also known as The Everyday Gluten Free Gourmet.  Over the past year, Cinde has pivoted her in-person baking and cooking classed to online classes, and this is where I spent an enjoyable evening this past week.  This may not seem like a big deal, but Cinde has worked to achieve a high quality of audio, video, timing and student experience.  She has two cameras on her, so we can see her in her kitchen, as well as a closeup of her work area.  I learned something in our class making biscuit-style cinnamon buns and it was nice to hear Cinde say she learns from her students in every class.  You can follow Cinde on Instagram at everyday.gf.gourmet.  As well, you can browse some of her recipes and sign up for a baking class on her website at www.everydayglutenfreegourmet.ca

Sue’s Websites and Social Media –

Podcast https://acanadianceliacpodcast.libsyn.com

Podcast Blog – https://www.acanadianceliacblog.com

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 –

Baking – I’ve mentioned before that my gluten free baking journey started only after my daughter was diagnosed.  I was six months into my diagnosis when hers was confirmed.  I hadn’t tried many gluten free recipes in those six months, but now I was on a mission.

My mother had always baked for our family when I was young, and I was determined to bake for my family too, only now it would be gluten free. 

At the beginning of any celiac disease journey, there comes a time when you feel helpless, not in control of your food or your life – at least that’s the way I was.  Then I started to bake.  I had many fails, and many just so-so victories, but I did it.  Gluten free baking is a science onto itself and I was determined to, if not figure it out, at least get a handle on it and be able to bake and share my creations with family and friends. 

For me it was about control.  I couldn’t get a cookie with a cup of tea when I met a friend in town, but I could bake one and bring it with me.  I could have complained, but instead learned from my failures and kept on baking.

We all deal with the challenges of celiac disease differently.  Before my daughter’s diagnosis, I spent much of my time feeling sorry for myself.  Fast forward, I learned to bake, baked for family and friends and opened a small gluten free bakery in Kingston, Ontario.  The bakery operated for ten years and it was a great deal of work, but I was on a mission.  I still very much enjoy baking, and it still gives me a sense of control over celiac disease.  Today, I can safely say – “mission accomplished”.

A Conversation with Lisa Rigney

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

On this episode I speak with Lisa Rigney of the Edmonton Chapter of the Canadian Celiac Association about her family’s experience of having a child diagnosed with celiac disease.  Lisa takes us through what happened, and more importantly, how the family coped.  We all understand a serious diagnosis is overwhelming, but I think by sharing our experiences, it lets us all realize that we can only do our best in trying times.  Lisa explains some of the situations she wasn’t prepared for, as well as the discussions she had with other family members, friends and the school.  At the end of our conversation, we agreed to meet up again soon to talk about the support systems available to families of the newly diagnosed, and expectations as the child gets older.

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 –

I had in my notes to ask Lisa about some of the emotions she and her family felt around her daughter’s diagnosis at the time, but I didn’t expect to ask her about “guilt”, and it was something we kept coming back to.  I think we can all agree that the child who gets a diagnosis of celiac disease is alleviating themselves of many years of health issues, and that’s a good thing.  On the other hand, there is often the thought – why me, why us, why our family?

Guilt is an odd emotion.  We feel it because we think we could have done better, or because we had caused some part of an unfortunate situation.  There will always be unfortunate situations whether your child has a serious medical condition or not.  As far a celiac disease goes, it may be not packing suitable snacks for an unexpected outing, but with other children, it might be you didn’t pack an extra pair of shoes or socks after they stepped in a deep puddle. 

As parents we want the best for our kids, and Lisa said it correctly, that we’d gladly take the celiac disease ourselves than having it diagnosed in one of our children.  But that’s not the way it goes. 

Many of the families I know, have, over time, learned to be grateful for the “first” family diagnosis that led to solving the medical mysteries of other family members.  Often the “first” is in a child.  We regularly take our kids to see a doctor for recurring complaints that, as adults we might let pass.  Because they are our children, we pay more attention to their health than our own.  I suppose, that turns out to be the opposite of “guilt”.  We go out of our way to ensure the health of our kids, and sometimes that means finding out they have a condition with a genetic component, that is life long, will be difficult at first, but as it resolves, life will be good again, health is restored and often other family members realize they too need to pay more attention to their health.  Not guilt, but love.