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Ep 215 The Gluten Perspective
Let’s start the blog with the show notes for this Episode –
This week I chat with someone who is almost a part of our family. My daughter Deanna’s boyfriend Adam has learned a great deal about celiac disease and the gluten free diet over the past few years. His perspective is from someone who has no eating restrictions. We often wonder how the rest of the world sees us, and how we can best help them to cope with our eating restrictions. Adam takes us through his education on celiac disease, what he expects when they eat away from home and, how he copes with educating his family and friends, as well as being protective of Deanna.
Deanna and Adam 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 –
From a parental point of view, it’s certainly comforting that someone else is looking out for my daughter and trying to keep her safe. It’s hard enough to go back in time to remember my learning curve about celiac disease, but in Adam’s case, it’s third person. He has to understand the condition, understand how to eat safely, and how to educate others who are around Deanna. In our household, I taught the family as I learned. Deanna was only five when she was diagnosed, so she doesn’t remember her life before celiac. My husband saw me suffer with digestive issues for years and was empathetic and helpful in any way he could be. My younger daughter doesn’t know anything different.
That worked at home, but eventually Deanna was going to go out into the world and needing to stay safe as an adult. She takes her need for the gluten free diet in stride, and it’s that easy-going attitude that has rubbed off on Adam. They both know the severity of the condition, but also have strategies worked out to keep Deanna safe. What became clear in my conversation with Adam was the responsibility he takes on to ensure that “his” world is safe for her. His world includes his family, friends, family traditions, vacations, and everyday situations.
Those of us with celiac disease, for the most part, started our education about gluten after we received our diagnosis. In Adam’s case, it started when he met Deanna. We continue to learn everyday how to make our daily meals satisfy and safe. Adam, too will continue to learn. Our motivation is our health, his motivation is caring for someone special – so different and not different at all.
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Ep 214 In Conversation with The Allergy Chef
Let’s start the blog with the show notes for this Episode –
On this episode I’m welcoming an extraordinary individual, not only for what she has accomplished, but for the simple fact that she’s still alive. Kathlena is The Allergy Chef, mostly because her list of allergies is so long that she had to come up with recipes to make meals from the foods she could eat. Kathlena went on to set up a powerful website to serve the multi-allergy community. Among her allergies are wheat and corn, but it is her severe sensitivity that would give anyone pause. She has started a website and program called RAISE to provide a multitude of resources to the allergy community. A discount code has been extended to podcast listeners – acc50 for 50% off the first month of membership on the RAISE website. As well kids online baking classes can be accessed at freeandfriendlyfoods.com/collections/online-courses
Main website: raise.theallergychef.com
Instagram: @theallergychef
Kathlena The Allergy Chef with her respirator 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 doesn’t happen often with podcast guests, but I was overwhelmed after talking with Kathlena. Receiving a diagnosis of celiac disease and having to change your eating for the rest of your life is enough to put most people into a tailspin, and that’s understandable – gluten free is hard. The challenge Kathlena faces and is overcoming is monumental.
We all hear people say – “if I couldn’t eat bread (or a particular pizza, or a particular bagel), I’d die”. Well those of us eating gluten free know that no one is going to die switching to gluten free. In Kathlena’s case, she could die, if she were to eat a normal diet, or even a strict gluten/wheat free diet.
We know celiac disease is not an allergy, and the more I think about it, the more I see the distinction. As I mentioned I have a severe allergy to flaxseed. My reaction to flaxseed is digestive, but it’s much more violent than my reaction to gluten. My gluten reaction does last longer, than my reaction to flaxseed, but I’ve learned to cope with it better. The sum total is my complete avoidance of both gluten and flaxseed – if there’s a chance either one is in a food, I have to give it a miss.
Many people with celiac disease have or develop allergies to other foods. For me, it happened about four years after my celiac diagnosis, just when I thought I had everything under control. I know celiacs who can’t have eggs, or potatoes, or corn (not as sensitive as Kathlena) and an allergy to lactose or milk is not uncommon.
I’ve always looked at my “extra” allergy as another layer of avoidance. It wasn’t until I spoke with Kathlena that I realized the parallels between struggling with celiac disease and struggling with one or more allergies. In the case of allergies, the struggle is compounded by adding on multiple foods or substances. Kathlena’s drive to make resources for the allergy community is more than admirable. She is smart, a go-getter and a survivor. In her situation that’s what it takes to keep going and to keep giving back.
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Ep 213 Update on Dental Issues and Celiac Disease
Let’s start the blog with the show notes for this Episode –
I’m welcoming back to the podcast Dr. Melissa Ing who is a well accomplished dental educator with a specific interest in celiac disease. Dr. Ing shares with us the information she presented in two lectures at the recent Chicago Midwinter Conference. Her first lecture was titled “Celiac Disease, Non-celiac Gluten Sensitivity and Your Dental Patients”. The second lecture was about nutritional influences on oral and systemic wellness. Melissa is very much into the “Mouth-Body Connection” and teaching a whole-body approach to dental professionals. In 2020, Melissa put together articles she wrote for the CCA’s Better Living Gluten Free Publication on Oral Health. Here is the link to that publication –
https://conta.cc/3tEPeD4 This is the article Melissa suggested you might want to share with your dental professionals to help them learn more about celiac disease.
Melissa has been a guest on two episodes of A Canadian Celiac Podcast –
Episode 106 Celiac Disease and Dental Education
Episode 169 Celiac Disease and the Dental Office
These are the samples of different grains Dr. Ing uses for her “game” during her lectures.
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 –
By the time most of us get a diagnosis of celiac disease, we’ve seen our fair share of doctors from different specialties. When I think back to the doctors I consulted or were referred to, I certainly don’t count my dentists on that list. After talking with Dr. Melissa Ing, I can see how a dental professional could have played a part in my eventual diagnosis.
Melissa was very kind with her time, and outside of our recording she let me pick her brain about some personal dental issues and how they related to the conditions she mentioned. I remember once my dentist, after seeing a clear yellow line on my front teeth suggested that I most likely had a high fever when those teeth were developing or maybe when they were pushing through my gums. I didn’t pay much attention at the time, as I was undergoing a procedure with him to remove the lines.
In hindsight (isn’t it great how hindsight works?), what he was actually trying to explain to me was that our teeth can tell the story of our health. This is all the more important when it comes to recent research linking dental health with other conditions including alzheimer’s disease. We’ve all been told how important flossing is, and like many of us, my flossing habit comes and goes. Dr. Ing stressed the importance of flossing for good gum health, which is important on the list of things we can do to try to stave off alzheimer’s.
Whenever I speak with Dr. Ing, I learn something. This time it made me realize how the teeth can tell a story, and how integral teeth and gum health is to our overall health. I best get out the floss, this time the habit is going to stick.
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Ep 212 March 2022 Roundup
Let’s start the blog with the show notes for this Episode –
Ellen Bayens of theceliacscene.com has given us some great articles to look at this month. Somehow, she found an article written on the issues of cross contamination in restaurants in Malta. It’s amazing to see that celiacs in another part of the world with a very diverse cuisine from ours have the same issues ordering food in restaurants. As well there is an interesting study that was done recently looking at the blood tests done with children and how indicative they are of a final diagnosis of celiac disease. The aim of this study is to identify a benchmark level for blood tests that would indicate a biopsy for a child is not necessary.
We discuss the curious issue of Novak Djokovic, the international tennis star who has publicly said that he is on a gluten free diet for his health. There is more behind this story, and much of it will leave you with more questions than answers.
Are you familiar with the FODMAP diet? Ellen explains the premise of the diet and how it is being used by some celiacs who are struggling to gain remission from their symptoms. In Episode 93 of this podcast, I interviewed Steven J. Singer, who runs Fody Foods, helping those who are using the diet as a tool towards better health.
Ellen gives us more information on how you can post questions on Instagram for Selena DeVries @celiac_dietitian. As well Selena offers a focused Facebook group for those with persistent symptoms, along with courses and assistance on her website www.healthbean.ca.
Ellen and I go on to speak about food including the Taco Revolution foodtruck, Trumps Foods Hazelnut Torte on Amazon.ca, the Everyday Gluten Free Gourmet online cooking classes and Stella’s Perogies, which my daughter recently found in Ontario at a Metro store.
Trumps Foods Gluten Free 9″ Chocolate Hazelnut Torte • Restaurant Cross-Contact Concerns are Common to Celiacs World Wide
• Standards for Diagnosing Celiac Disease in Children, Without Biopsy, Continue to Evolve!
• Is Gluten-Free Tennis Superstar Novak Djokovic Undermining our Credibility?
• Low FODMAP Diet Found to Improve GI Celiac Symptoms in Celiacs• Tuesdays Instagram Questions & Answers Session (FREE!)
• Join Selena’s Symptom Relief Facebook Group
EVERYDAY GLUTEN FREE GOURMET ZOOM CLASS CALENDARMar 2 – Thai Curry & Salad Rolls
Mar 5 – Yeast Bread Series: Soft Dinner Rolls
March 23: Beautiful Buttermilk Biscuits
April 2: Yeast Bread Series – Pizza
April 9: Understanding Gluten Free Flour
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 –
Sometimes you get to the point where you think you’ve heard it all. This is never the case with celiac disease, from the variety of symptoms to diagnosis stories, there is always more to learn. The story Novak Djokovic told about the testing that led him to believe he has a gluten sensitivity is one I’ve heard before, among others.
When I operated my bakery, I had the privilege of speaking one-on-one with most of my customers. They wanted to explain their difficulties with gluten free food or the gluten free lifestyle and often wanted to share their diagnosis stories. I was always willing to listen, in hopes I might be able to offer some advice. I heard too many stories of stool samples being sent to labs in Texas – after which the patient would receive an extensive list of the foods they cannot eat. These lists were not limited to gluten, or even lactose, but went on with lists of food additives, vegetables, meats and grains. The question I got after I was shown one of these lists was – What CAN I eat? These tests may have a purpose, and for some they may even identify a condition that has slipped through the cracks. My response was usually that I didn’t know how the results were arrived at, and didn’t have much faith in them. My attitude was – If a test is valid and useful for medical practitioners it would be available in Canada and not only from a pricey lab (hundreds of dollars) in the US. You may not agree with me, but seeing the test results without any instructions on what to eat, or follow up to re-test or monitor, didn’t seem like a valid strategy for such a dramatic change in diet.
Once, on the topic of diagnosis, I was told about the “loaf of bread” test, similar to the one given to the tennis star. When I appeared sceptical, I was assured by my customer that the person who performed the test, was not legally able to diagnose celiac, so this was the best alternative. Clearly this was not a qualified medical practitioner, or they could have at least asked the patient’s doctor to request lab work. My customer thought I would be happy to hear this test wasn’t done by anyone qualified to make a full diagnosis. To the contrary, I was upset to think that someone could perform (as Ellen called it) a party trick, change someone’s diet for life and not even attempt to get a qualified diagnosis.
Most women who have had a child remember the “test” that was performed over their pregnant belly with a ring on a string to determine the sex of the baby. That party trick had a 50/50 chance of being correct, and no one ever took it seriously. These other “tests” have much less validity, and people pay for the privilege, which makes them want to believe, and often they delay or defer any valid testing for celiac disease – and we all know that doesn’t go well.
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Ep 211 Food Bullying and the Gluten Free Diet
Let’s start the blog with the show notes for this Episode –
The topic of food bullying is a broad one and means different things to different people. To help me tackle with subject, I invited Nicole Byrom, Registered Dietitian with the Canadian Celiac Association to discuss food bullying in the context of the gluten free diet. The act of making someone feel bad for the food they are eating often comes from a place of ignorance about celiac disease and non-celiac gluten sensitivity. Education can be a key factor in your response to a food bully, but issues get more complicated depending on who is the being bullied and who the bully is. Children often face negative comments on their food when away from home and adults often have negative interactions with family members, or they are seen as being needy and high maintenance. Nicole is able to put food bullying in perspective with tips and strategies to empower you or your chid. Nicole gave us her email, Nicole.Byrom@celiac.ca, if you have any suggestions for issues you are facing that the CCA may be able to help with.
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 –
When I started editing the audio files for this podcast, I kept hearing two words – negative and positive. These are very specific terms, it’s not very often that one person’s negative would be someone else’s positive, as we often hear with trash becoming treasure. Herein lies our challenge. The bully, in comments, tone and sometimes deeds is completely negative. It’s hard work turning the negative experience for someone being bullied into a positive experience for both parties.
Nicole’s strategies of education and empowerment are a good place to start. Education involves the victim feeling secure in their knowledge of celiac disease and the gluten free diet, as well as being able to pass on some vital facts to the bully in hopes that they will realize the seriousness with which you must take the diet.
Empowerment is harder to “learn”. Most kids get pretty good at it. Those of us diagnosed later in life often have trouble finding a balance between talking (emphatically) and listening (with sincerity).
The other thing we touched on near the end of our conversation was just saying “NO”. This sounds simple, but the diverse social, cultural and family situations we often find ourselves in, make saying that little word very had. For me, like most celiacs, being glutened is painful and can set me back for a couple of days at least. These episodes give me the strength to stand up to anyone who wants to challenge me, or make me feel bad for eating my special food. No food is worth the pain, discomfort and longer-term effects on my body. The bullies don’t realize that, because if they did, they wouldn’t be bullies. Oh yes, and during my editing, I realized we both used the word “positive” much more than the word “negative” – so there is a way to deal with this.
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Ep 210 The Big Gluten Free Pizza Episode
Let’s start the blog with the show notes for this Episode –
This episode is a fun and informative conversation with two of my friends about Gluten Free Pizza. Fortunately, my friends Ellen Bayens (theceliacscene.com) and Cinde Little (everydayglutenfreegourmet.ca) are experts when it comes to ordering pizza in a restaurant and making pizza in your home kitchen. Ellen gives us some great tips on the questions you need to ask to ensure your gluten free pizza is safe to eat in a restaurant. As well, she gives us some information you can use to decide if ordering a takeout pizza is safe for you. Here is the link to Ellen’s list of questions to ask and the Gluten Free Pizza restaurant she spoke about –
Cinde and I talk about some of the options available to you if you want to make a gluten free pizza at home. There are premade pizza crusts, pizza dough and dough mixes. Although each of these options may be gluten free, the best gluten free pizza crust will likely come after experimenting with different yeast-based crust recipes. Techniques are very different from wheat pizzas and can often be best learned from a baking class. Whether you’re baking your pizza in a very hot oven, on a pizza stone or steel, or on an outdoor barbeque, Cinde gives us lots of tips to make your best gluten free pizza. You may want to join one of Cinde’s baking classes to gain some confidence and set you up for success with gluten free pizza.
Cinde’s Class Calendar – https://everydayglutenfreegourmet.ca/class-calendar-2/
Cinde’s Information on Flour Blends – https://everydayglutenfreegourmet.ca/recipe/gluten-free-flour-mix/
I mentioned my Gluten Free Cauliflower Pizza crust and you can see the video along with the ingredient list at the following link –
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 –
There were a few years when I operated my gluten free bakery that my life revolved around making more gluten free pizzas than you can imagine. All my pizzas were made by hand, and I had to recruit extra staff to make it all possible. The job was daunting with orders for hundred of pizzas each week, baked, topped, frozen and boxed. I did enjoy the process though.
After the bakery closed, it took me a bit of time to begin enjoying making pizza at home; and even more time to begin experimenting with different recipes. On Cinde’s suggestion, I recently purchased the book “No Gluten, No Problem Pizza” by Kelli and Peter Bronski. This book is a deep dive into different types of pizza dough, and techniques, and was written after the couple travelled to Italy and within the US, visiting more then twenty-five pizzerias and eating more than sixty gluten free pizzas. This is my kind of reading.
Currently, I’m working with the New York style dough recipe, using my pizza stones, but I’m anxious for the summer months, when I can switch to the heat of the propane barbeque to see what difference that makes. I’m happy with the results, and even happier with the challenge of making a variety of crusts that will suit my taste.
The thin crust pizza I made at my bakery will always be something I enjoy, but being able to add a healthier cauliflower crust and now a newer method and recipe to make a chewy thicker crust, is a good start on my overall pizza repertoire. Making pizzas is fun again, eating them is fun too!
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Ep 209 Discovering Nairn’s Gluten Free
Let’s start the blog with the show notes for this Episode –
I had the pleasure of speaking with Maria and Emma about Nairn’s Gluten Free Products imported from Scotland. Maria is the importer/distributor and Emma is the Brand Manager in the UK. Maria clarifies the requirements of importing a product and ensuring the packaging and labelling meets Canadian standards. Emma fills us in on the long history of oats in Scotland, as well as the origins of the Nairn’s bakery. She details how and why Nairn’s started their gluten free product line, as well as how they source oats and test for gluten. You can follow Nairn’s on Instagram @nairns_canada, and on Facebook at Nairn’s Oat Crackers Canada. Recipes can be found on the UK website at nairns.com/recipes. You can purchase Nairn’s products at some of the large grocery chains in Canada and online at www.well.ca. More recipe ideas can be found in the CCA 2021 Holiday Survival Guide – download your copy at https://www.celiac.ca/wp-content/uploads/2021/11/2021-CCA-Holiday-Guide.pdf
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’m always happy to help promote safe gluten free oats in the diets of those with celiac disease or those on a gluten free diet.
Growing up, I often ate oats, either as oatmeal for breakfast or in a variety of oatmeal cookies, both store-bought and homemade. I was diagnosed with celiac disease at the end of 1995 and at that time, we were years away from having “gluten free” oats available for those on a gluten free diet. I was open to trying every new grain or non-grain ingredients I could, that was gluten free – and there were many, but I still missed my oats.
I remember a CCA conference many years ago when Dr. Vernon Burrows made a presentation telling us that if oats could be grown apart from gluten containing crops, harvested and processed with “free from gluten” equipment, then the oats would be gluten free. It was quite a concept those many years ago, but all of us who heard the presentation were hopeful, that one day, celiacs would be able to buy and consume safe oats and oat products.
Of course, we didn’t realize it then, but so much more had to happen to before safe oats were available to the gluten free consumer. Health Canada regulations and labelling laws had to be changed to recognize this specially grown and prepared oat product, along with education of consumers. The education part was taken on by the Canadian Celiac Association. A position statement was issued and added to over the years and is worth reading – https://www.celiac.ca/living-gluten-free/oats-statement/
My excitement about oats stems mostly from the fact that our oats have the same taste and nutritional value as “regularly processed oats”. Over many years, much care has been taken to produce different gluten free grains, combining them in blends to allow us to create wonderful baked goods. Oats, on the other hand are the whole grain – not broken down into starches, or hydrolyzed – available in different forms for different uses (groats, rolled, quick oats and flour). In my oatmeal cookies, I use oat flour and rolled oats. Gums and other standard gluten free additives are often not needed when baking with oats as they are a whole grain. The new Gluten Free Oreo Cookies contain gluten free whole oat flour. The nutritional breakdown is spectacular – 75 calories, 3g of protein, 2.5g of fibre in only ¼ cup (20g).
I use gluten free oats in my baking whenever I can. I find oats filling, nutritious and satisfying. Gluten free oats now are more than I could have even dreamed of when I sat in on Dr. Burrows presentation those many years ago.
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Ep 208 February 2022 Roundup
Let’s start the blog with the show notes for this Episode –
It’s the beginning of February, so that may mean Groundhog Day to some, but to me it means a lively conversation with Ellen Bayens of www.theceliacscene.com.
Ellen and I talk about a study looking at a link between atopic dermatitis and celiac disease, along with a publication of a report on increasing prices for gluten free in the UK. We also look at a paper from Turkey about the common myths surrounding celiac disease – most are universal. Ellen brings to my attention that Earth’s Own Oat Beverage will no longer be gluten free and we explore the why’s and how’s of that happening. Ellen highlights a couple of my recent podcasts Ep 207 about Suki the Gluten Detection Dog as well as my Gluten Free Weigh In episodes with Aaron. Every Tuesday, Selena Devries answers questions on her Instagram Story (@celiac_dietitian), but I never knew how to send her a question. Ellen walks us through the process, which is simple, but unless I was ready to do it, wouldn’t have explored. Here are the links to the topics Ellen and I spoke about.
• Significant Association Between Atopic Dermatitis and Celiac Disease
• ATTENTION: Gluten-Free Product Labeling Change | Earth’s Own Oat Milks
• Prices Up ⬆️ Selection Down ⬇️ for Celiac Shoppers
• “Inmate with Celiac Disease Starving to Death,” says Attorney
• More Misconceptions About Celiac Disease• Aaron Copes with the Emotions of a Celiac Disease Diagnosis
• Tuesdays Instagram Questions & Answers Session (FREE!)
• Join Selena’s Symptom Relief Facebook GroupSue’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 try not to go down the rabbit hole that is social media when I’m researching a topic, and this is especially true when I consider something like the choices Earth’s Own had to make when switching from gluten free oats to “regular” oats.
It is difficult for us as consumers to step into the minds and boardrooms of the food producers and grocery store chains. I’ve sat in some of those meetings, and they were not what I expected. I particularly remember one meeting when I was presenting a new product to my distributor who would then list it for stores (mostly health food stores) to stock on their shelves or in their freezers. I had prepared some slick product cards with photos and nutritional information, case dimensions, storage instructions etc. As well, I had samples, plates and napkins. I was ready to sell.
The distributor had invited the marketing people and the sales people from my “area” to review the product. I was ready, gave my short talk, handed out the product cards and prepared the samples. It should have all worked perfectly, except they had very little interest in tasting the product. I was completely taken aback. Most attendees didn’t sample the product, and the ones who did, seemed to be doing it out of courtesy. How could this be? It was a great new gluten free offering!
Turns out the interest in the product boiled down to –
- What is the cost at my door?
- Is the packaging appropriate?
- What is the shelf life?
- Does it require freezer space?
- What price are the competitors?
I was able to answer all their questions, but as a gluten free food producer, I was most concerned about taste, texture, shelf life, visual appeal. As a distributor and retailer, they were most concerned about picking up the product, storing it, delivering it, and if it was unique, it would be an easier sell to their stores. Oh yes, their biggest concern was price!
Any large food producer has to walk the fine line between producing a food they are proud to promote, and the acceptance of grocery stores to list it, order it, and shelve it appropriately. And then there’s the price, which regardless of product quality will make or break the wholesale and retail equation. Earth’s Own had difficult decisions to make, ones I’m sure they wish they didn’t have to make, and one they knew would disappoint some customers. I’m sad to lose the brand from our gluten free shelf, but tend to believe that Earth’s Own did their best to alert their gluten free consumers and did the best for their brand in the long run.
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Ep 207 Suki The Gluten Detection Dog
Let’s start the blog with the show notes for this Episode –
On this episode I speak with Kendra, the human who trained Suki to be a Gluten Detection Dog. Kendra speaks about how Suki was trained to alert her if any food, drink or medication contains gluten. Kendra trained Suki during Covid, and although Suki is ready to accompany Kendra into restaurants, stores and on public transportation, the training is ongoing. Kendra takes us through some of the interesting instances when Suki was able to detect very small amounts of gluten, which Kendra would not have been able to detect from ingredient lists. I preface and follow up my conversation with Kendra with some general information on working dogs, that you, like me, may not have been aware of. I’m looking forward to a follow-up conversation with Kendra, so if you have any questions for her, please email me at acdnceliacpodcast@gmail.com
You can follow Suki on Instagram at @sukipwd
Kendra also mentioned her trainer, the website is www.crescentservicedogs.com
Kendra and Suki 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 find the idea of having a dog that can alert to any gluten in a food, beverage or medication is almost a miracle. I shouldn’t be surprised since we have all seen videos of drug sniffing dogs, finding illegal drugs hidden in well sealed packages, buried in other pungent substances. I will never cease to be amazed at the enhanced sense of smell of our canine companions.
That got me thinking as to how most of us look for gluten in our foods and medications, and thought of some pros and cons for the current options.
Pros and Cons of Different Ways to Detect Gluten
Reading and Understanding Labels – steep learning curve of the suspect ingredients as well as navigating current labelling regulations; time consuming to read every label every time; must research or call the manufacturer if there are unanswered questions; research and ask questions every time a meal is eaten from a restaurant with the more questions you ask, the more you should be able to be assured of the safety of your food; discretion can allow you to keep your diagnosis “private”
Nima Sensor – cannot test food before you buy it; the sensor is only testing for gluten in the small sample used and if negative : ) does not necessarily mean that the entire serving is gluten free, as gluten may be present in another part of the food; cost to purchase the sensor; cost to purchase the individual test strips, there may be a hesitancy to use the costly test strips saving them for the most suspect of foods; testing foods while in a restaurant or out in public may get some questions and stares and is making the diagnosis “public”
Gluten Detection Dog – very long and involved training for both dog and owner; if properly trained the dog can alert to gluten in any form at a store before purchase, at home preparing food and all ingredients, food ordered in restaurants and medications; dog can travel with owner to detect gluten while away from home; a well trained dog can detect very small amounts of gluten under 20ppm; ongoing cost of keeping a pet including food and health care; having to be prepared to deal with public reaction to a dog wearing a “gluten detection dog” vest; training never stops and must be continually re-enforced; owner still has to understand all the rules around gluten free and be vigilant in restaurants when ordering; making the diagnosis “public”
My comparisons are not very scientific, and they do show my bias. I’ve never been a fan of the Nima Sensor, I think it can give a false sense of safety. I’ve learned to read labels and re-learned as regulations changed, and I’ve done it over 25 plus years, so I’m comfortable with that. As a newly diagnosed celiac Kendra saw the diagnosis as a significant problem with her job which involved regular travelling. The decision to purchase and train a gluten detection dog is a major life commitment. Clearly Kendra will reap the rewards of her hard work and decision for many years to come. Just as the Nima Sensor may be the answer for some people, and reading labels is the answer for most of us, wouldn’t it be great to have a cuddly companion who is always watching out for any gluten in your food.
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Ep 206 CCA Dietitians and The New Labelling Guide
Let’s start the blog with the show notes for this Episode –
On this episode I’m speaking with Nicole Byrom RD, and Caleigh McAulay, dietitians with the Canadian Celiac Association. At the CCA’s recent virtual conference, Nicole and Caleigh presented the new CCA Labelling Guide, which, although there have not been new regulations on gluten labelling, clarifies many of the questions Nicole and Caleigh regularly receive. We talk about the term “may contain” and levels of risk involved in certain labelling terminology used in Canada. You can access their presentation and print out the guide at –
As well, Caleigh spoke to me about the CCA’s Gluten Free Product Finder, which lists all the foods bearing the gluten free certification from the CCA.
https://www.celiac.ca/living-gluten-free/gf-product-finder/
There is a new app for your phone which will replace the pocket dictionary from CCA to determine if an ingredient is gluten free.
One question that is often asked of both Nicole and Caleigh is about eating out or ordering food for delivery. This subject was well covered by Ellen Bayens of http://www.theceliacscene.com during the recent conference and you can view her presentation at –
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 –
The Canadian Celiac Association has been trying for many years to secure the services of a dietitian as a resource for both members and the general public. The CCA has been fortunate to have dietitian interns help out at the office in Toronto, prior to Covid. It was wonderful to realize that interns, trained on calls from celiacs and general inquiries would soon be practicing in Canada.
It is more exciting that the CCA now has the services of two dietitians, Nicole on the west coast and Caleigh in the Maritimes. There are many of us who have been volunteering with the CCA for years and much of our volunteer time was taken up with the newly diagnosed. Over time, lots of people have worked hard to train us lay people in the terminology to use when speaking with the newly diagnosed. Understanding the questions as well as the emotional roller coaster of the newly diagnosed takes an empathy, which is difficult to teach.
All of us CCA volunteers can be thrilled that now there is professional help to answer the wide range of questions from celiacs and their families. It’s always been difficult to establish the trust with a new celiac that makes them comfortable to ask any questions – remembering the old adage that there are no stupid questions. Especially now, with staying home and social distancing, they can ask a professional on the other end of the phone. I would be re-miss to not mention that donations from individuals in Canada have allowed the CCA to employ both Nicole and Caleigh. Thanks to everyone who has donated to the CCA and thanks Nicole and Caleigh!