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

It’s the beginning of the month again, so I get the pleasure of speaking to Ellen Bayens of theceliacscene.com about some of the topics of interest that have come up during the past month.  We discuss the diagnosis story of the family of a Neonatologist in the US who sought out the team at the Celiac Disease Program at Boston Children’s Hospital for help.  Ellen and I discuss how comprehensive the whole family approach to treating and further diagnosing family members is.  See the link below to the article about this family’s journey.  Ellen and I go on to look at some of the feedback we’ve had about the stickers and wristbands from www.celiackidstuff.com and how families can use these tools to help their kids eat safely.  The silicone wristbands for kids which say – I’m a Celiac Kid     I Can’t Eat Gluten – are now being made available for gluten free bakeries to sell directly.  If you know of a bakery that might be interested in offering the wristbands, please let me know and I can reach out to them.

Ellen and I speak about bagels and doughnuts – I’ve ever the purest, but explain to her why fried doughnuts are rare.  Also, below is my recipe for Gluten Free Doughnut Holes.

In the previous episode of the podcast, I recorded a discussion with my adult daughter Deanna, about our differing attitudes towards celiac disease and the gluten free diet.  I am grateful for the opportunity to have these discussions as I suspect that much the same dynamic is going on in other families with multi-generational celiac disease.  Also, at the end of that podcast, Episode 191, I included a short “blooper reel” which Ellen refers to and gives a classic insight into mother/daughter interactions.

Episode 200 of the podcast is approaching, and I’ve decided to mark that milestone with a special episode allowing Ellen and my audience to ask me questions.  If you have a question, or comment you’d like Ellen to pose or discuss with me, please email her at ellen@theceliacscene.com.

https://theceliacscene.com/sending-kids-school-celiac-disease/

Sue’s Doughnut Holes

1 ½ cups gluten free flour blend (I use ½ cup of each white rice flour, potato starch & corn starch)

1/3 cup white sugar

1/3 cup skim milk powder

1 tsp guar or xanthan gum (omit if your flour blend includes gum)

1 tsp salt

1 tbsp baking powder

1 tsp vanilla extract

2 tbsp oil

2 eggs

2 tbsp water

Blend together all the dry ingredients.  Add vanilla, oil, eggs and water.  Add more water 1 tbsp at a time if batter is too thick.  Blend by hand, or with a mixer.  Batter should be thicker than pancake batter but not as thick as cookie dough.

In a saucepan heat oil to 375° (only fill saucepan less than half full with oil, leaving enough room for the bubbling expansion of the batter).  Drop spoonfuls of the batter into the hot oil, cooking only 3 or 4 at a time.  Turn to cook evenly till dark golden.  Remove onto absorbent paper towel.  While still warm, place in a bag with sugar and cinnamon to coat.  Can be kept in sealed container 3-4 days.  If you want to eat the doughnuts right away, you can drizzle them in icing or chocolate sauce, but just know they will not keep well if they get soggy (so eat them up!)

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 –

Over the past few years, I’ve shifted many of my buying habits to online.  Certainly, the pandemic has changed the way we shop for most of us.  For me, an online store was a resource that anyone, anywhere could use to get something they wanted or needed.

When setting up the online store www.celiackidstuff.com, it did not occur to me that any of the products would be available anywhere else, besides through the website.  Recently, I had reason to visit a couple of gluten free bakeries in Ottawa, and yes, one reason was to do some shopping, but before I planned my trip, I thought back to my time operating a gluten free bakery and the customers who came in.  My bakery was usually the first stop for the newly diagnosed.  Husbands, wives, parents and children came in seeking safe food for themselves or their loved ones.  There’s no prescription to hand into a pharmacy, just the requirement for gluten free food.

What I was able to provide, because of my knowledge and training from the Canadian Celiac Association was support and advice, not only about safe food, but how to navigate a gluten free lifestyle.  We never thought of it as a lifestyle then, and only because of the popularity of the diet, do we consider it an accepted way to eat now.  The families I was drawn to and felt needed more guidance involved the diagnosis of a child, often the only celiac in a family.  Parents were lost.  How to provide safe food at home was one thing, but allowing their child to eat outside of their sight was quite another.

Somewhere, in planning my trip to the gluten free bakeries in Ottawa, it hit me.  Years ago, I was the first stop for parents of a newly diagnosed celiac child, so things must be similar today, and I had a tool that could help them in so many ways.  Selling the wristbands at the trusted place where safe food was available will make a difference to families who are urgently searching for solutions for their gluten free child.  I’m excited to be able to offer the Celiac Kid Stuff wristbands to bakeries who are the ‘boots on the ground” when it comes to filling the needs of celiac families.  If you know of a gluten free bakery that might be interested in offering the wristbands to customers, please either speak with them, or pass on the information to me.  You’ll be doing a good thing.

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

On this episode I speak with my daughter Deanna.  She has been a guest on the podcast in the past, and I take this opportunity to ask her about some of her attitudes and coping skills dealing with celiac disease and how those compare to my approaches.  I was a Mom of two beautiful girls when I was diagnosed, with Deanna’s diagnosis coming five months later, just in time for her fifth birthday.  Having suffered from an unknown cause for some very diverse symptoms for many years, my diagnosis became one of questioning every food, not only for me, but for my daughter.  In contrast, Deanna doesn’t remember her symptoms prior to diagnosis and has been raised to understand the diet completely and take it in stride.  Hopefully, you will find some aspects of each of our perspectives in your approach to the diet and how it affects your life.  I couldn’t resist the urge to include some of the bloopers from our conversation in a mix up at the end of the podcast.  It was a joy to have such a heart-to-heart with my all-grown-up daughter.

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 became clear to me when I was talking with Deanna (and listening as I edited the audio) was that our attitudes towards the diet and celiac disease are formed by our initial experiences. 

In my case, I suffered for years.  Finding a diagnosis was a blessing, but I confess to feeling the anger of “why me?” and “why has the diagnosis taken so long?”.  Like many adult celiacs, I lived through my childhood years, my school age years, my dating years, my early adulthood, my early married years, and motherhood before I found the key to health.  The “key” unlocked the gluten free diet, but then I had to put in the work to not only understand the diet, but to master it.

In Deanna’s case, she was too young to really notice that her Mom was experiences any health issues.  Once I received my diagnosis, there was a bit of a shake up in the family eating routine, but a young child rarely notices those differences.  It was simple to explain to her that Mommy couldn’t have certain foods, and like most kids, it didn’t mean much to her.  Once I received her diagnosis, so many puzzle pieces came together – multiple ear infections, what I thought were reactions to some medications, lots of tummy aches, low energy after eating – it was all making sense.

Deanna doesn’t remember a time in life before the gluten free diet.  She was excited to try her first gluten free Oreo, never remembering she ate them until her 5^th birthday.  On the other hand, I remember everything: how I would meet friends at MMMuffins in the mall for tea and a treat; late night snacks at the only diner in town open after the clubs closed; attending gatherings and only remembering the people I socialized with; being able to just get in the car and go out for a day without a care as to what my next meal would be.  My diagnosis solved the mystery, but added a new layer of complication to my life.  In Deanna’s case, it was just a pivot – there was always a plan for her next meal, always gluten free foods on hand and I was there to ask the questions for both of us.  Our conversation made this difference in our perspectives clear, but it took a bit of thought on my part to understand why.  I think I’ve worked through that and am grateful for her unquestioning acceptance of the diet. 

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

The Canadian Celiac Association successfully presented two virtual conferences in 2020 and is now gearing up for the 2021 Conference.  I speak with Nicole Byrom RD from the CCA who is organizing the conference.  This conference will be somewhat different from all other CCA conferences in the past, in that of the two days, November 13^th and 14^th, the first day will be geared towards those who have been diagnosed for two years or less.  The second day will focus on information for those who have been diagnosed longer than two years.  Certainly, anyone is welcome to join either day, but I find it intriguing that this distinction was made.  You can find out more about the conference, the speaker lineup and how to register by going to the CCA website and clicking on News & Events where you’ll find the Conference information listed – https://www.celiac.ca/news-events/national-conference/

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 hard to remember exactly how many CCA conferences I’ve been to.  I can mostly remember them by the variety of cities and warm welcomes I received in different parts of the country.

One of my first conferences was in Hamilton, Ontario.  At the time, I was a member of the CCA, but I didn’t live in Canada.  I was living with my husband and two daughters in Bermuda.  Life was good for us in Bermuda, and that’s where I was finally diagnosed, and my daughter was diagnosed five months later. I can’t recall what year I attended the Hamilton conference, but one reason I did was because they offered a children’s program, and without knowing other celiac kids in Bermuda, I was somewhat desperate for Deanna to meet other gluten free kids. 

We had an amazing time at the conference and Deanna met a girl her age who was there with her celiac Mom.  The girls became good friends.

I wasn’t able to attend all the conferences held since my return to Canada, but here are some locations I remember – Kitchener-Waterloo, Ontario; Kamloops, BC; Toronto, Ontario; Ottawa, Ontario; Moncton, New Brunswick and Halifax, Nova Scotia.  Attending so many conferences, I got to know many of the Chapter Executives who would often be the only travelling delegates from other provinces. 

Attending CCA conferences all across Canada was an amazing experience with memories I will always treasure.  But, the luxury of being able to attend conferences far from home as the chapter representative was something that most members missed out on.  Virtual meetings can’t replace the social time, formal dinners and meeting new friends that happens at a face-to-face get together, but, it can make available the presentations from the excellent speakers that give real life to a conference.  The CCA is very big on inclusivity, and virtual conferences do just that.  I particularly like that the conference is free of charge, with donations kindly accepted – no one is excluded. Maybe one day, I’ll get to meet in person again with my CCA friends, but for now, I take great comfort in knowing that everyone can attend these informative conferences, no one misses out and even if you’re in the newly diagnosed category, as I was at the conference in Hamilton, you’ll gain so much that will help you live a fuller gluten free life.

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

On this episode I speak with Carmen from the Ottawa Chapter of the Canadian Celiac Association who came up with the idea of organizing a sleep away camp for kids with celiac disease.  The camp was to have occurred last year, but as we all know, the pandemic changed that.  The camp did go ahead this past August and I’m thrilled to be able to talk to Carmen about both organizing the camp as well as being on site to ensure the food was prepared and served strictly gluten free.  Carmen has two daughters and they both attended camp, along with some of their friends.  Carmen’s daughter, Rosie,  has celiac disease, and I was thrilled to be able to ask her what she enjoyed about camp, both the activities and the meals.  You can find more information at campceliac.ca

Camp was made better for the donations of very generous sponsors, some of which are –

Schar Gluten Free

Rizopia Gluten Free Pasta

O’Doughs Gluten Free

Farm Boy Grocery

All Free Allergen Friendly

Purest Foods

The Bean Sprout – Dedicated Gluten Free Chinese Food

Only Oats

Bobo’s

Queen Street Bakery

Sun Butter

Aidan’s Sans Gluten Free

Nature’s Path Organic

Kinnikinnick Gluten Free Foods

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 –

I remember a few years ago, I was watching a sporting event on television and the hosts were recalling some past seasons statistics.  One of the statistics they listed had an asterisk beside it.  I was immediately confused and asked my husband what it meant.  Apparently, that was a shortened season due to some labour dispute or strike.  Made sense.

Looking back on 2020 and now 2021, it occurs to me, both of these years will be forever known by the asterisk beside them in lists of yearly accomplishments.  Labour disputes or strikes might affect some statistics, but a global pandemic ticks all the boxes for unexpected, unwelcomed and uncomfortable.

What is extraordinary is that both 2020 and 2021 will both have asterisks beside them when it comes to Camp Celiac.  The camp for 2020 was planned, subscribed to, donated to, and talked about, but, as we are acutely aware, camp was a no-go last year.  Lots of work went into planning, but no amount of work could make it happen under the dark cloud of so much that was not known about Covid-19. 

The asterisk beside the year 2021 for Camp Celiac means something altogether different.  Camp Davern was given preliminary go-ahead instructions mid-June.  With not enough specific information on guidelines and a very tight ramp up schedule, it was a bit of a miracle that camp actually opened on time.  There were issues – limits on the number of campers, fewer qualified counselors available to work the summer, testing to be done on site, and the dreaded decisions that had to be made ahead regarding what to do if there was a positive test.

Despite these challenges, Camp Davern opened and hosted weeks of happy campers.  Thankfully, Celiac Camp was scheduled to run closer to the end of summer than the beginning, when routines were in place, counselors were comfortable with the rules, and in the case of our celiac campers new to Davern, and who didn’t know any different.

Celiac Camp at Camp Davern near Perth, Ontario (about 90 minutes outside of Ottawa) was a roaring success.  Many people worked hard to achieve that success, but in the end all that matters is that the kids were happy and well fed.  Celiac kids were the regular kids for one week.  I think everyone involved in camp should be very proud of the 2021 *.

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 Adventures

And here are links from Ellen’s list for school lunches.  The ones with asterisks are available online, the others are found at retailers everywhere.

Care Bakery 

Celiac Kid Stuff *

chef Pola’s Granola

Cloud 9 Gluten-Free Baking Mixes *

Corn Thins 

County Prime Meat Snacks 

Forno de Minas Cheese Rolls 

Glutenull Baking *

Gnu Santé gnubees Beverages *

Grimm’s Fine Foods 

House of Yee Gluten-Free Potstickers 

O’Dough’s Bread, Buns, Bagels & Muffins 

Royal Nuts Gluten-Free, Peanut-Free Nuts *

Stella’s Perogies 

Tilly’s Galley Soups & Rice Mixes *

Wendel’s True Foods *

Wise Bites Quinoa Snacks * 

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.