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Ep 188 September 2021 Roundup with Ellen Bayens
Let’s start the blog with the show notes for this Episode –
It’s the beginning of September, so it’s my opportunity to speak with Ellen Bayens of The Celiac Scene about the studies and articles she has found over the past month to present to us. We talk about a study looking at the gut microbiome of infants, in an effort to identify differences over time in the gut microbiome that later develops into celiac disease. As well, we look at an article from Beyond Celiac that examines some of the perceived difficulties of the gluten free diet and how they might be a hinderance to adherence. Ellen tells us of an adventure vacation that was very celiac safe.
Ellen has compiled a list of 10 products that might be helpful when the time comes to sending kids back to school with lunches. Apart from the food, we also chat about the importance of kids being able to advocate for themselves and their diet, which brings up a short discussion about the stickers and wristbands available from Celiac Kid Stuff.
For the full articles, here are the links from theceliacscene.com
Do Changes in the Gut Microbiome Precede Celiac Disease?
When is the Gluten-Free Diet Not Enough?
Rave Review for Celiac-Friendly Wildcoast Kayaking AdventuresAnd here are links from Ellen’s list for school lunches. The ones with asterisks are available online, the others are found at retailers everywhere.
Cloud 9 Gluten-Free Baking Mixes *
House of Yee Gluten-Free Potstickers
O’Dough’s Bread, Buns, Bagels & Muffins
Royal Nuts Gluten-Free, Peanut-Free Nuts *
Tilly’s Galley Soups & Rice Mixes *
Sue’s Websites and Social Media –
Podcast https://acanadianceliacpodcast.libsyn.com
Podcast Blog – https://www.acanadianceliacblog.com
Email – acdnceliacpodcast@gmail.com
Celiac Kid Stuff – https://www.celiackidstuff.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 –
Something that many people take for granted has been put to the test over the past 18 months – being able to travel safely. Of course, Covid-19 has been the issue for most people, but for celiacs the ability to travel safely is something we experienced prior to March 2020, and it’s something that will concern us once travel begins again.
It’s hard to imagine in what other community we would get excited to read or talk about the experience of one woman not getting sick on a wilderness kayak adventure trip. It’s not as if she needed medicine to maintain her health and was surprised she could make arrangements to receive that medicine while on her trip, but conversely, she leads her life avoiding gluten and was able to continue to do so while travelling.
A simple thing really, safe food; food that meets particular specifications, at least for one person. Strange that we are both surprised and encouraged that it can be accomplished.
Something Ellen mentioned keeps coming back to me – one of the guides for the kayak trip was also celiac. It makes me remember the many times when I’ve been in a restaurant, or a doctor’s office, or on a cruise ship and found a fellow celiac or someone with a celiac connection. Life went so much smoother. Just think, eight out of ten people with celiac disease are not officially diagnosed. How much better would life be once those undiagnosed celiacs became part of the diagnosed group. They could take their places in our society to bolster our ranks, to be a bigger voice, to be a presence. Ellen got it right when she said that every employer should have a celiac on staff. I would welcome that new normal.
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Ep 187 Celebrating with Kinnikinnick
Let’s start the blog with the show notes for this Episode –
Some good news on this podcast from Julie Greene of the CCA and Marina Michaelides of Kinnikinnick. Kinnikinnick has partnered with the Canadian Celiac Association in celebration of their 30th birthday. Partnering with the CCA means helping them with ongoing special projects. In this case, Kinnikinnick is sponsoring the wide distribution of the Growing Up Celiac book for families. Additionally, they are hosting a contest for kids which will run for 30 days, with a terrific prize pack each day! Kids are encouraged to go on the CCA website to enter (with a parent or guardian) by spotting the difference in two pictures – kids love to do that! I am thrilled that Celiac Kid Stuff stickers and wristbands were chosen to be a part of the prize packs.
Kinnikinnick is also introducing some new products for their birthday, including three new flavours of Kinni-TOOS cookies. Currently, if you place an order of a minimum $50 you get a box with all the new flavours together (until supplies last). If you haven’t purchased from Kinnikinnick in a while you may not realize that they have switched most of their products to “free from” most of the major allergens including milk and eggs (they were always nut free). If you enjoy Kinnikinnick foods, (and who doesn’t) now is the time to order while they are in a great giving birthday mode!
Here’s the link to the CCA website to enter the contest – https://www.celiac.ca/
Also, here is where you can order directly from Kinnikinnick – https://www.kinnikinnick.com/
Here’s the link for my website Celiac Kid Stuff – https://celiackidstuff.com/
Sue’s Websites and Social Media –
Podcast https://acanadianceliacpodcast.libsyn.com
Podcast Blog – https://www.acanadianceliacblog.com
Email – acdnceliacpodcast@gmail.com
Celiac Kid Stuff – https://www.celiackidstuff.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 gluten free can be a challenge. I remember, before I started my small bakery, I tried hard to refine my recipes till they were just right. Often, as is common with gluten free baking, I could make something just fine one day, and when I would try the next day, I would get a different outcome. Humidity and rice flour is just one of the challenges.
Often, I would have a customer come into the bakery to ask if something could be made free from something like, milk or eggs or nuts. Sometimes I could do that. It did take trial and error – my amazing brownie recipe isn’t amazing if I just leave out the walnuts!
If you’re not familiar with baking and baking ingredients you might not know how integral some of those requested omissions can be to a recipe. Milk adds moisture and protein. Eggs are for binding, adding protein, giving lift and helping strengthen a rise when baked. Nuts, and often we used almond meal, again give strength with protein, as well as texture, and allow the finished product to hold it moisture and freshness. These are just some of the examples of ingredients, that people ask me to leave out.
My challenge was whether I wanted to offer baked goods which I felt would be inferior, but would meet the needs of the customer. My choice as a business person was mostly no. There were a couple of foods I made that with minor substitutions gave a similar product and met one of these needs (amazing chocolate cake). In that case, I removed the original cake from our menu and only prepared the version without milk and butter.
Offering “free from” versions of common foods and having them look, taste and behave (maintaining freshess) like the original is a much bigger challenge then baking gluten free without those restrictions. As well, the supply line for ingredients must be vetted not only for contact with gluten, but the other free from ingredients as well.
I spoke to Jerry Bigam of Kinnikinnick a couple of years ago about their choice to go free from the top allergens throughout their entire product line. He knew it would take time. I realized it would be difficult. I understand they have had some ups and downs, but they are doing it and doing it well.
You may never have baked gluten free, but take it from me, gluten free baking is challenging, free from gluten free baking is something that deserves recognition!
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Ep 186 Step Up for Team Celiac
A Conversation with Julie and Megan from the Canadian Celiac Association.
Let’s start the blog with the show notes for this Episode –
As the pandemic has progressed, organizations have become more creative in adapting their annual events to still continue, but in a different format. That is certainly the case with the Scotiabank Run being held in Toronto. The CCA is heading up Team Celiac and inviting anyone across the country to Step Up for Team Celiac and participate in whatever way they can – choose a suitable distance, walk and run, challenge yourself with more than one distance, or run during the in-person event in Toronto. Other cities host Scotiabank Runs and some of our celiac groups are very involved in the events in their own locations, but if you can’t participate locally, or the Toronto run is your local run, head to the CCA website to sign up to Step Up for Team Celiac. Julie and I also discussed the upcoming virtual CCA conference, which has a different format this year. The first day is for the yet to be, or recently, diagnosed with the second day being for the those of us who have been diagnosed more than a couple of years. The CCA is also asking for our help in formulating their proposal for labelling of some foods, including supplements that do not currently fall under the labelling regulations for food. More information on these initiatives can be found on the CCA website – www.celiac.ca
You can learn more about many of the topics we discussed on the social media platforms for the CCA and the Events page of the website at –
www.celiac.ca/news-events/events/
Sue’s Websites and Social Media –
Podcast https://acanadianceliacpodcast.libsyn.com
Podcast Blog – https://www.acanadianceliacblog.com
Email – acdnceliacpodcast@gmail.com
Celiac Kid Stuff – https://www.celiackidstuff.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 –
My husband tells me I have the best jobs, and work hard, problem is, most of my jobs are volunteer and don’t pay me anything. I learned from my mother how satisfying being a volunteer is. As a child not yet in full-time school, she brought me along with her to the local “old folks home”. Now we call that a long-term care facility, and retirement homes, many with great facilities, have sprung up everywhere. Those many years ago a long-term care home was part of our community and I learned very young, that the very old were usually very kind.
To me, being a part of a volunteer organization came naturally, I grew up with it. Nowadays, time seems to be so much more precious, and it’s difficult to pull yourself away from your time-consuming and ultimately valuable family responsibilities to simply give of your time. I can’t fault anyone who isn’t able to see their way clear to volunteer. In some circumstances we can only consider being able to allocate that time to a charity or not-for-profit, as a luxury.
It occurs to me that with everything else going on in our lives, if we can somehow take some of the time for things we are doing already and focus it toward a bigger purpose, maybe that can allow us to do more. Most of us are trying to do more on a regular basis, and it can be exhausting. This brings me to the organized runs, in this case the Scotiabank Run. You aren’t asked to organize the run, or even organize a team. The ask here, is for you to take the time you already allocate for a walk or run and make that time do double duty. Chances are a couple of times of week at least, you walk the dog, or walk the kids to the park, or go for a run, or hike – let’s do the same thing, but make it count more – double duty. That’s a perspective on volunteering and supporting our community that most people can get behind, and involved in. Sometimes we just have to be creative to make it work.
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Ep 185 Health for Those Struggling with Gluten Free
A Conversation with Cinde Little
Let’s start the blog with the show notes for this Episode –
On this episode I speak with Cinde Little, a guest I recently spoke with on the podcast regarding her virtual baking classes. Cinde has released a comprehensive course for those new to gluten free, as well as those who are continuing to struggle with the gluten free lifestyle. In Cinde’s words –
“This is an introduction to my course called HEALTHY ME, a guide to take you from overwhelmed to confident in 30 days. The course is for you if you’re new to the gluten free diet or still struggling to stay on it. Your lifestyle is as individual as you are so the course allows you to determine what is most important right now. It’s designed to be personal and includes 9 areas of life because a gluten free lifestyle isn’t just about the diet. HEALTHY ME is an acronym that stands for: Healing, Eating, Advocate, Lifestyle, Travel, House Rules, Your Community, Medical Team and Education. As soon as you register for the course you get instant access to all 9 video modules, a workbook with personal action plan and a Resource Guide to get started right away. Follow this link to register or learn more: https://everyday-gluten-free-gourmet-school.teachable.com/ Visit my website at https://everydayglutenfreegourmet.ca/ and CLICK on the HEALTHY ME COURSE tab to see the course details and sign up. I’m Cinde, the Everyday Gluten Free Gourmet, sharing tips and recipes to help you create a gluten free lifestyle you love.”
Sue’s Websites and Social Media –
Podcast https://acanadianceliacpodcast.libsyn.com
Podcast Blog – https://www.acanadianceliacblog.com
Email – acdnceliacpodcast@gmail.com
Celiac Kid Stuff – https://www.celiackidstuff.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 –
It’s been more than 25 years since my diagnosis. I am grateful for my diagnosis. Over those 25 years, I’ve tried to participate in the celiac/gluten free community, taking an active part to improve the lives for those whose medicine is the gluten free diet.
Strange thing though, I can’t remember many details of those early years. I remember flopping down on my bed in tears because I’d made a dinner for the family, and I couldn’t eat any of it. I remember having my daughters tested and Deanna’s coming back positive. I remember searching for a gluten free cake recipe to make for her fifth birthday. I even remember going to my first (and only) dietitian appointment – but honestly I don’t remember much – I was pretty overwhelmed.
What I do remember was the pain before my diagnosis, and how, over time, it went away.
Operating my gluten free bakery, attending CCA conferences and being the contact in my area for the newly diagnosed, I’ve met and helped many people and families who were facing this new challenge. Trouble is, so many years on, I can’t remember much about the day-to-day issues and struggles.
A few years ago, I went back to college to take courses in media, public relations and event management. One assignment we had was to write about something we considered ourselves an expert in. The choice was simple. I would write about what it’s like to get a diagnosis of celiac disease. My paper was informative and comprehensive until the instructor started asking “simplistic” and “dumb” questions. The questions were on purpose to make me realize that as an “expert”, I should be writing for someone who knows little of the subject matter. This is an old concept, but it was new to me – “The Curse of Knowledge”. It’s difficult to un-learn something, especially if it’s one of the cornerstones of your overall knowledge on a subject. I was humbled. I could explain the damaged villi in a small intestine, but I wasn’t explaining what happens for the first meal after the doctor gives the diagnosis, or how to look differently at your kitchen. Way before learning to read labels, there is a time of panic, not being able to feed yourself for so many reasons. I’d forgotten that, and I have to work hard to put myself back in that position, so I can help others. It’s people like Cinde, natural educators who take the curse of knowledge and work with it, who can really make a difference for so many.
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Ep 184 August 2021 Roundup
A Conversation with Ellen Bayens
Let’s start the blog with the show notes for this Episode –
I look forward to chatting with Ellen Bayens of www.theceliacscene.com at the beginning of every month to get caught up on celiac and gluten free news that has come to light over the past few weeks. On this episode, Ellen and I speak about a press release from the UK regarding the price increase of rice flour and how it might affect gluten free food producers. Ellen also tells us a diagnosis story from a family with a young daughter which highlights many of the frustrations felt by families with a sick child. Both Ellen and I are excited to talk about a new venture we’ve started to support celiac kids and their families. Our website www.celiackidstuff.com has begun selling stickers and wristbands that let kids tell everyone around them that they are special, they are celiac, and they need to eat a gluten free diet. The stickers and wristbands are aimed at kids from ages 4-12, as well as special stickers for caregivers to use when sending food to school or get togethers. On a similar, but different note, Ellen and I speak about restaurants in her area. There seems to be abundance of places to get gluten free fish and chips, or maybe I noticed this because its such a treat for me, and hopefully, other celiacs as well. Ellen mentions a very clean brand of jerky that is well labelled gluten free and free from other additives. Also, if you are in the Victoria area, we identify a discount you can get, just for mentioning www.theceliacscene.com.
Soaring Cost of Gluten-Free Ingredients Could Trigger Price Hikes
Another Cautionary Tale of a Child’s Delayed Celiac Disease Diagnosis
Celiac Kid Stuff – stickers and wristbands www.celiackidstuff.com
Introducing 100% Gluten-Free Bare Bones Fish & Chips in Port Alberni
900 Degrees Wood-Fired Pizza Flips to Gluten Free!
Pirate Chips Every Day – All You Can Eat
Rock Cod Cafe Now Almost 100% Gluten Free!
NEW! Introducing Country Prime Meat Snacks
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 –
Okay, I can’t help myself but to be excited about launching our new website www.celiackidstuff.com, in an effort to equip kids and their parents with the tools they need for the kids to go out into the world and back to school.
I remember years ago, when I hosted a week of summer sleep away camp for celiac kids here in Ontario, we spent some time talking about what it was like to be a kid with celiac disease. One thing that keep coming up was something even adults find draining – having to explain that you can’t eat gluten, what it is and why.
Most kids learn quickly that their foods can be different from their friends, and over time, they are able to articulate that. For the most part, young children, don’t realize that all adults who offer them food don’t actually understand their special needs.
The camp kids said social situations were the worst. Having to single yourself out when all you want to do is fit in. As adults this can be difficult, but for a child it can be devastating.
We made the stickers and bracelets cool, so that kids would be proud to use and wear them. Each child has a unique identity, and the stickers and bracelets help children feel more confident about their differences.
We decided to make the bracelets in green and purple. I was thinking one of those colours would likely appeal to any child. I was surprised to see that kids want both, and even want to wear them at the same time! I think that’s great!
If you have a celiac child, or know a family with a celiac child, please tell them about this new resource. Thanks!
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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:- 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
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.
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Ep 182 The Kinnikinnick Response to Covid
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.
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Ep 181 Baking with The Everyday Gluten Free Gourmet
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
My biscuit-style Cinnamon Bun ready with a cup of tea by the lake. 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”.
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Ep 180 When a Child Gets Diagnosed
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.
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Ep 179 July 2021 Roundup
Let’s start the blog with the show notes for this Episode –
On this episode I speak with Ellen Bayens of theceliacscene.com to discuss the many topics and articles she brought to our attention over the past month. To begin the conversation, I invited Tamir Barzilai from the company honeycomb.ai. Tamir’s company is developing an app which will allow you to set a profile with your dietary restrictions, and give you specific meal suggestions at restaurants to meet your needs. The app will be released in late summer or early fall, and will charge for use on a monthly basis. Tamir invited our listeners to sign up for the app prior to release at a cost of $14 (US) to own the app for life, without monthly charges. There are other advantages to joining the beta testing for the app when it releases. Tamir explains what makes this app with artificial intelligence different from other data based and often crowd sourced information apps. You can sign up as an early adopter for the app at –
Ellen and I go on to chat about three online medical resources that provide indepth information on celiac disease and other related gut health issues. One of the resources compares celiac disease to IBS, a condition many of us have been diagnosed with.
Ellen and I talk about a recent article on money saving strategies for the gluten free diet, and a study performing a new type of mass screening of children in Italy for celiac disease. As well, Ellen talks about our unique ability to host visiting students who require a gluten free diet.
Expert Tips on Saving Money on Gluten-Free Groceries
IBS vs CD | Similar Symptoms | Different Causes, Triggers & Treatment
Canadian Digestive Health Foundation | Celiac Disease Resource
Badgut.org Gastrointestinal Society | A Resource for Celiac Disease
Study Makes Case for Mass Screening of Children for Celiac Disease
Ladysmith & Nanaimo! Would You Host an International Student with Celiac Disease?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 was fascinated speaking with Tamir about his concept for a meal search app using artificial intelligence (AI). It doesn’t seem that long ago that I was thrilled to find an app that had other people’s suggestions for meals they’d eaten that seemed safe and gluten free. The bar was lower, sometimes the suggested meal didn’t exist on the current menu, or the chef had changed, or staff weren’t completely onboard with the knowledge about gluten free. Human error often gets in the way.
Maybe that’s why I was excited that this app was utilizing AI, which simply means that the app is programmed to do some of the thinking for the user. It makes sense. The gluten free diet is rule based: no wheat, rye or barley as ingredients; no cross-contamination in a shared fryer; no questionable ingredients in sauces etc, etc. This would seem to suit artificial intelligence quite nicely.
The real surprise with honeycomb.ai is the extent to which AI works for both data capture and data search. The AI is set up to make the job of the restaurants easier, with the app already knowing what goes into many dishes. As well, when the user sets up a profile, AI “learns” about your preferences and is able to make very specific recommendations.
I spoke with Tamir about his motivation for creating such a complex app, and he said, with his knowledge of the power of AI, he was surprised it had not yet been done. We often think of ourselves as the “questioners” when we sit down in a restaurant. We have different levels of questions depending on how comfortable we are with the answers. I’d like to think that honeycomb.ai will be our “questioner”, paving the way with an accommodating restaurant. This is exciting!