Dietary gluten avoidance

Gluten, a protein found in wheat, rye and other grains, appears in many food products on grocery store shelves and restaurant menus. In this podcast, Dr. Natalie Riediger and her guests discuss their research using the 2015 Canadian Community Health Survey dietary data as they explore dietary gluten avoidance in Canada, including who is avoiding gluten and what their dietary patterns are.

Natalie Riediger is an Assistant Professor in the Department of Food and Human Nutritional Sciences at the University of Manitoba. Christa Dubesky is the President of the Manitoba Chapter of the Canadian Celiac Association. Anne Waugh is an MSc student in the Department of Food and Human Nutritional Sciences and Research Assistant working with Dr. Riediger.

Transcript

Introduction: 0:04

The way we grow and produce food is ever changing, shaped by consumers and the climate in which we live in farm research at all points of our food system is essential for continuously improving food's journey from farm to table, The Manitoba Agriculture and Food Knowledge Exchange explores timely research innovations and applications that make our food system better than ever, join us for today's podcast.

Natalie Reidiger : 0:27

Welcome to the Manitoba Agriculture and Food Knowledge Exchange podcast. I'm Dr. Natalie Reidiger and I'm going to be your moderator for today's podcast. I'm an assistant professor in the department of Food and Human Nutritional Sciences, a Canadian Institutes of Health Research, early career investigator, and a recipient in 2018 for the JA Campbell Research award from the Canadian Celiac Association. So today we're going to be talking about dietary gluten avoidance in Canada. I have 2 guests today for our podcast. The first is Christa Dubesky, President of the Manitoba chapter of the Canadian Celiac Association, who was diagnosed with celiac disease 7 years ago in Northern Manitoba. Welcome Christa.

Christa Dubesky: 1:06

Thank you Natalie for having me.

Natalie Reidiger : 1:08

Our other guest is Anne Waugh, who is my master's student, also in the department of Food and Human Nutritional Sciences and a research assistant on the study that we did looking at dietary gluten avoidance in Canada, and she herself is also gluten free, and so brings those personal experiences and insights to the study. So welcome Anne.

Anne Waugh: 1:21

I'm happy to be here.

Natalie Reidiger : 1:28

So just to set the stage, I'm going to tell our listeners a little bit about our study that we did, which was funded by the Canadian Celiac Association. So together with my post-doctoral fellow, Dr. Adriana Mudrey, we looked at Canadian Community Health survey data that was collected in 2015 on the dietary intakes of Canadians, including a subset of people who avoid dietary gluten. We looked at not only what people were eating, but who was avoiding dietary gluten, and how their diets differed compared to those who didn't avoid gluten, but some of the multiple dietary avoidances that people followed, as well as their eating habits in terms of eating out at restaurants. So there are many aspects to this study. So we shared some of this research with the Canadian Celiac Association, Manitoba chapter, back before the pandemic and that's where we met Christa Dubesky. So Christa, can you tell us and our listeners a little bit about, the Canadian Celiac Association and specifically the Manitoba chapter and their role?

Christa Dubesky: 2:32

Certainly. So, thank you again, the National Canadian Celiac Association, works in collaboration with the Manitoba chapter, the National deals with Canadian Food Inspection Agency and Health Canada, and they have advisory committees that come up with the guidelines for people to have them read labels and get their vaccine and things such as that. And they also are regulating the research funding that comes, that they collect and disperse it out such as the JA Campbell work. And so we work in collaboration with them to bring that information at the local level, where we prepare, collect, assess information and it break it down for individuals related to celiac disease. We investigate the availability and procurement of gluten-free food products within the province to make sure that there is food available for people. And then we r aise funds to support our efforts to bring this information forward. We have a newsletter and we have in p erson meetings, that you mentioned, where we have individuals, speaker series essentially, where we have someone t hat's an expert in something related to celiac disease. Either it's a physician, a d ietician, dentist, dermatologist, or we have someone from the grocery store, come in and tell us about their food p roduct. And so we have that occur, and we're still continuing to have that with COVID where we've moved onto the zoom p latform to do that. We also have a gluten-free 1- on-1 sessions where individuals who are newly diagnosed and having difficulty navigating g luten-free lifestyle. We provide information sessions on how to r ead l abels, and w e also have a walk-a-thon where we raise money to help support us. And right now that money is going t oward our food bank initiatives. We found out during the pandemic that Harvest Manitoba, which is the distributor of food for the province to the food bank, w eren't sorting for gluten-free anymore. So it came to light that there wasn't food available for people who have this dietary restrictions. So we've worked in relation with them to actually buy gluten-free food, have g luten-free f ood donated, and this past Saturday, we had a team of 10 socially distanced people packing kits. T he 120 kits packed to be given to people who need it through the food bank. So that's what we do in the province to support those living with celiac disease.

Natalie Reidiger : 4:49

That sounds like great work. So maybe just to backtrack for those listeners who maybe aren't as familiar with gluten, Anne can you tell us what is gluten and what foods have it and why anyone would want to avoid it besides celiac disease? Although we have Christa here talking about celiac disease, and that's an incredibly important stakeholder and group, more people avoid gluten that don't have celiac as well. So tell us a little bit about that.

Anne Waugh: 5:38

For sure. So gluten is a really neat thing. It's a protein, but it doesn't actually exist in something like a dry wheat flour, there needs to be water introduced to create gluten. Which is really fascinating. And it comes from the interaction of two other proteins that are found in grains like wheat or barley or rye, as well as some other kind of interesting hybrids between those and gluten is super neat. It provides something like your sourdough bread with its beautiful elastic properties. So it's a really neat substance. And actually a lot of recipes that use wheat flour are kind of centred around the management of gluten. So something like a pie crest doesn't have a lot of gluten in it at all. You're kind of going for a flaky buttery kind of thing. Whereas a loaf of bread for example, is a great example of a very glutinous product. So gluten related disorders or people who might avoid gluten are folks with celiac disease, which you kind of already talked about as well as people with an allergy to wheat specifically. So just like a regular allergy to dogs or something like that you can also be allergic to wheat as it turns out there's also something called non-celiac gluten sensitivity, which is kind of in its own arena and that's what I fit under I think. So it's not celiac disease it's not a wheat allergy, it's kind of something a little bit new and something we're still kind of figuring it out. As well, people with irritable bowel syndrome might also be avoiding gluten. So there's all sorts of different folks who would choose to avoid gluten as avoiding gluten is the only treatment available for those disorders, at least currently.

Natalie Reidiger : 6:25

And for people with irritable bowel, i t might help manage their symptoms, you know, as they perhaps try to avoid different foods to manage their symptoms. And of course there's a whole bunch of people who avoid it for quote unquote health reasons. Although we don't really have any evidence for that. So this is a heterogeneous group of people avoiding gluten. And as you mentioned, it's found in a lot of foods that are everywhere, especially in Canada. So Christa in our research, we found that 1.9% of Canadians report avoiding dietary gluten. We weren't really quite sure what percent we were going to get when we were looking at this data. So it was, yeah, with 1.9%, does that number Christa, does that surprise you?

Christa Dubesky: 7:30

Not really. There was a trend, a surge, right when I got diagnosed that everything was being labeled gluten-free and there was some social influencers saying, you know, to avoid it. So it doesn't really surprise me that individuals are avoiding gluten it seems. But I don't think that there's... of that 2% I don't know if that's fully avoiding gluten completely and they're completely cutting out of their diet or they think that they're avoiding gluten by selecting gluten-free products. So maybe just one of those things where they're reporting, but they don't really understand that they are avoiding gluten. So we find a lot of people within our association who are still consuming gluten, even though they think that they're consuming or they're trying to be gluten free. So they report that they're avoiding it, but they may not necessarily be doing it at a hundred percent rate. So it doesn't surprise me that the number's actually higher than what the percentage is for people diagnosed with celiac disease and tied in with individuals who have that non-celiac gluten sensitivity, which that gluten intolerance, we say at the Celiac Association, Manitoba chapter, that we are very tolerant of the intolerant to gluten who might not be diagnosed with celiac disease. We understand that there are individuals, a lot, many of them, cause Manitoba does have one of the highest MS rates in Canada. A lot of people are recommended that they don't consume gluten for that too. So we have a lot of individuals with a lot of autoimmune disorders avoiding gluten. So it doesn't really surprise me, that I actually was thinking it was higher regardless of your... the survey... but it'll be... it doesn't surprise me. But it doesn't... it's not shocking to me. I actually thought it would be a little bit higher.

Natalie Reidiger : 9:04

In the Prairie provinces, it is higher. So we did find that there was significant variation in different areas of Canada, which surprised me. And actually when we met each other a few years ago, I think it was you or somebody else at the Canadian Celiac Association, gave us some insight as to why we were seeing this different pattern. Because I think in the Prairie provinces, Anne correct me if I'm wrong, it was closer to 2.7%. And it was 1.5% in Ontario. So Ontario had the lowest prevalence of gluten avoidance and people had about half the odds of having gluten avoidance there, as compared to say Atlantic Canada, which had the highest, but wasn't actually all that different from BC or the Prairie provinces, which were up in the 2.5 to almost 3 range. So Christa, why do you think Ontario was kind of one of the anomalies, I guess Quebec was as well.

Christa Dubesky: 10:01

They have to pay to be tested in Ontario. So I think what's leading to this is that a lot of people are just self-diagnosing and they... there's a lot of research that's been done where if individuals have the full, you know, red or gold seal level, where they have the biopsy and they've got it confirmed through blood type, through genetic testing, through family history and through the biopsy of your gut, they are much more compliant. So in Ontario, I think a lot of people are self-diagnosing or they're just looking at family history and they're not being as compliant to the diet that they require. So I think that, and so they're reporting lower numbers because they may cheat more, or they may not feel that they've got that diagnosis. So they might test it a little bit more. Whereas someone who has that full diagnosis and they can see, or they have family members where they traced the history of what the outcome is. Cause it's more than just gut, there's skin conditions, there's iron, there's anema, a common symptom, there's 300 symptoms to celiac disease. I think that that may be why the number is so much lower.

Natalie Reidiger : 11:02

Thanks. So 1 of our other interesting findings once we started looking at the dietary patterns was a lot of avoidance of other foods among Canadians who avoid gluten and the highest avoidance of another food was dairy. So we found that 20% or 1/5 of Canadians who were avoiding gluten were also avoiding dairy. Although we were less surprised by this finding, Anne. We actually, in our research, reading the literature, we kind of expected to see that this was going to be higher, so can you tell us a little bit about that Anne, and maybe the social and nutritional implications of these multiple dietary avoidances.

Anne Waugh: 12:02

For sure. Yeah. It was really interesting to see that a lot of gluten avoiders were also avoiding dairy and actually that's the umbrella that I fit under. So I was definitely interested to look into this. Absolutely. So one of the, one of the reasons we suspect this might be the case is that untreated celiac disease especially can result in significant damage to your small intestine, which is where the digestive enzymes for milk sugars are located. And so if there's damage to that part of your small intestine, you won't be able to digest the milk sugars. So you will be lactose intolerant at least temporarily. So untreated celiac disease is kind of associated with lactose intolerance. However, once you're treated, as in avoiding gluten for long enough that your small intestine has been able to recover, you should be able to consume lactose no problem. It's interesting to think that potentially there is a lot of untreated folks with celiac disease out there, potentially. I also think lactose intolerance is fairly common on its own, like 10% of the population or something like that might have some degree of lactose intolerance. So that might also be related, but having multiple dietary avoidance is certainly makes your life complicated. I know that I'm a very difficult dinner guest. So it's sometimes hard to manage, especially socially that, you know, your options are quite limited sometimes whether it's going out for dinner or ordering in or something like that these days that you have to be pretty careful about, about what, what you're ordering or where you're ordering from and nutritionally, that can also be difficult. I know I find that for myself, sometimes that you have to be careful and things like calcium, for example, or vitamin D, which actually we found to be a little bit lower in people who are avoiding dietary gluten, if you're already avoiding something like dairy, potentially, that's going to be very complicated for you and something you have to be aware of.

Natalie Reidiger : 12:55

Thanks. Yes, that's right. We found calcium and vitamin D were both significantly lower in their intake. People avoiding gluten. So definitely important nutritional implications. On the bright side, though, we did find that people avoiding gluten were taking nutritional supplements to a greater degree than Canadians, not avoiding gluten. Christa, did you have anything to add to Anne's answer?

Christa Dubesky: 13:44

I start my day with a daily cocktail vitamin. So yeah, it is very much what she said there, that it's really nice to see when people actually get their diagnosis and they're always like lactose intolerant too. And then we always say to them, you know, don't introduce the lactose right away. Try a little small amount. And then all of a sudden they realize that they can add that to their diet. There's other food sources too, like oats are avoided for the first year after diagnosis, even gluten-free oats. Then when I, for myself, I have an issue with quinoa. So if quinoa is highly processed, I can eat it. But if when I first I was... there was no quinoa in my diet. So it's really good when people have that information that they don't always have to completely avoid things forever, that after a certain time frame, when that gut heals that's million threatened to, for people for awareness, that that does happen, that you can get quote unquote, better for this. That you can have those extra foods added in and it really does add diversity to the diet. So it's a good thing.

Natalie Reidiger : 14:41

Oh, for sure. The pleasure of being able to eat dairy and like Anne said, being able to go out and have a bit, a bit more freedom. So that leads me to our next finding and question, which we found that people who are avoiding gluten had about a 1/3 of the calories from restaurants compared to even people avoiding meat like vegetarians or vegans, as well as Canadians who had no dietary avoidances. So... 1/3 of the calories is quite a big difference in actually when we were going to publish this research, they're like, you know, the percentage of calories doesn't seem very big, but on an average day, yeah, it may not seem big, but it adds up over time, right? Because not everybody eats at a restaurant every day. And of course, clearly not now. And I think many of us who like myself, who don't avoid gluten... I'm missing restaurants, we know that gluten-free foods are difficult to come by at restaurants. And there's also the issue of cross-contamination. So Christa, tell us a little bit about how this impacts you personally, or... and also... you know... others at the members of the Canadian Celiac Association and this challenge, because it is a real challenge.

Christa Dubesky: 15:53

I was actually shocked by this number that about a 1/3 of the calories come from the restaurants, because I know for myself now, granted I do live in Northern Manitoba where I am very limited. There is no gluten free restaurant, there's gluten friendly and gluten wise. And I personally tend to not... I become a really great cook because you kind of have to, but you crave that normalcy. So when I do travel down to Winnipeg, pre-pandemic, I belong to a Facebook group that had... I wanted to go and be able to eat. And I, for myself, I looked at safety and numbers. So I figured I'm going to see if anybody else wants to maybe get together for supper, because it's really great when you get together with people and you don't have to explain that awkwardness, that awkward moment of where... I can't eat that I can't eat this and just to go and have that sense of normal. So that's where the 1/3 of people get in their calories. That's where it doesn't surprise me because people just want to feel normal. And so for myself, I would start organizing dinners. And just the last dinner that we had, we had... went for Chinese food. Fortunately in Winnipeg we have a restaurant that's not completely gluten free, but they do really well with managing gluten-free and we had 35 people come. And so that to me is an amazing, that's really telling from our first group where it was 7 to 35 over, I think, a 4 year period, because the restaurant begin to know and they see we're willing to pay a lot, if the food is good, cause there's usually an up-charge tied with gluten-free. If the food is good, you can have a whole community support you in terms of business. And so that's what seems to happen. And then in terms of within the chapter, we have our meetings 4 times a year when we would gather in a group and, there was 1... it was a potluck. And so people bring gluten-free food. And so it is really, you have that anxiety tied to it, whether or not what you're putting into your... you're always worried about what you're putting into your mouth with cross-contamination. And, you know, people will want to bake for you or cook for you or take you to a restaurant. And it's hard sometimes. Cause, and that's where within the chapter, we really work with giving people the tools to say, I can't do this or what they need to stay at a restaurant so that they're able to go and eat. And then they have to do that preliminary work before hand. And so it tends to limit us, but we tend... in our selection of where we can go, but tend to go to that same restaurant. If we feel safe going there, I can see that there's a few places I go... I personally go up to eat maybe once a month when I'm in the city, like come down and I'm like, okay, I'll go once. For the most part, I tend to avoid it, but I know that that's not doesn't work for everyone.

Natalie Reidiger : 18:21

So is there a list of restaurants that the chapter recommends for Winnipeg or Brandon?

Christa Dubesky: 18:28

Well within the social media world and within Facebook, there is a group that you can go and you can search restaurants in your area and it has grown. And we... that group people are pretty unbiased. If it's not a great meal, if they... they'll share it with others, if they feel unsafe or if they have somewhere that it's labeled as gluten friendly or celiac friendly, they'll let you know. So for instance, there's a restaurant chain that goes right across Canada. They have a menu that you can go through and pick your selection and they call it gluten friendly. And we really believe... when we go... we ask about labels of what their products are coming in and their sauce is... has may contain... may contain wheat. And that's a personal choice for some people to go in. Some people are like, oh, I don't have any reaction. And then others are like, I have had a reaction. And so I tend to not gauge my food choices on other people. I'm not a king, I don't have a food taster. It'd be great if I did... the things..."is there gluten in this?". You have to make those personal choices for yourself. And that's where we really... its empowering to see for people when they have those tools available to them, to see how they are able to make wise food choices. That 1/3 of calorie intake. I'm curious if that's an Ontario or where there's really like, that's where I'm assuming the Atlantic provinces have such a higher number of people that are avoiding gluten because maybe their education is a little bit stronger. There's a tighter community. And so that might be tied with it too, is that, that education's out there. So Ontario has a great education, but they're widespread and so getting that consistent education across the province, a bit of an issue, but like I said, safety in numbers. I find that if you're working with restaurants and letting them know what they need to do with that education, they're like... there's one gluten-free restaurant in Winnipeg and it does well. It really does. And we can go there and eat safely and it's great.

Natalie Reidiger : 20:15

Oh, that's great. Well, maybe some restaurants will listen to this. I mean, 2% while in the Prairies, like I said, it's higher, it's not really a negligible number. And even for people who are friends, relatives that are free as well. So, you know, people are going out with other people who are not gluten-free too. I think from a restaurant perspective, it's something that probably more should be looking into.

Christa Dubesky: 20:37

Yeah, it is getting better. Like I said, they... like... when I look at Regina, they have 6 gluten-free restaurants. And so when I look at Winnipeg, I'm like... why don't we have more like... straight, strict gluten-free. Saskatoon does really well too. So we know about them because we talk about when you're traveling, when we could travel. And so I call it the celiac underground, where you can, the communication that... it's really important. It is a quite a subculture ensuring that we all make sure that we can get gluten-free food available.

Natalie Reidiger : 21:05

Oh, for sure. And it actually would be interesting. We didn't look at regional differences in the restaurant, like eating out at restaurant, the pattern. So the results we found were from across Canada, but it would be interesting, I guess, to look at specific cities, although it's hard because we don't have that many people in the survey that avoided gluten to get reliable estimates.

Christa Dubesky: 21:26

It will be really interesting to see if that Ontario group actually eat at restaurants more... because again... they have more choices if you're in Toronto, there's lots of restaurants. Right? And so they may be going to those restaurants and getting their caloric intake, but they may not necessarily be buying the gluten- free food to comply with it on the other side. So it really is interesting... that the research, it's just fascinating.

Natalie Reidiger : 21:48

Okay. So, Anne question for you, this was your first exposure to research. So she started this as an undergrad student before doing her master's and obviously in an area personally relevant to you. So tell us a little bit about that experience.

Anne Waugh: 22:02

Well, I really enjoyed it. I have to say, I guess I should clarify my master's research isn't a part of this project, but this project has been really fun to kind of keep coming back to, and seeing the whole research process from the start of the study to, uh, publications and the... and the sharing of results. So it's been really great to look at something that, I mean, does impact me and kind of be able to bring that perspective forward and kind of interpret the results and with that mindset that's been really neat and it's been a great opportunity to kind of dive deeper into the science a little bit and explore that. I've always kinda wanted to know more and being able to do so with and apply all of that knowledge has been, yeah, really awesome. And I've enjoyed the opportunity to kind of share these results with, with other folks.

Natalie Reidiger : 22:48

And Christa, what about you and the CCA? How do you see this research potentially supporting your work and your mission and your mandate, or I guess the celiac community more generally and where do you hope research will go? Maybe... that's sorry 2 questions.

Christa Dubesky: 23:02

When I can see research going in, it just validates us as a community that people are taking genuine interest in what ailments we are suffering. And so... that anytime that research is being done and it's good scientific research, and it's gonna benefit, I just... gives me a good feeling inside, because ultimately it gives us a launch point for education, which is what our mandate is. So to educate and make sure that that information is made available to individuals. So it just shows how important perhaps support is in a community based on this. So that would be an interesting research launch point too, is if people are... where are they compliant? Is there more... the research would be, if these people are complying with the gluten-free diet, are they getting more support from the community? And that would also be a launch point for restaurants and information for them. So any research... it's like any news is good news, kind of thing, for us awareness is always beneficial. Any type of awareness that's brought forth in terms of research and educating is always beneficial. That makes it easier for all of us in the community to live with being gluten-free. When we know that people are taking interest and it's moving forward and progressing, and it brings more awareness to us and that just makes it... why we do the work for the CCA, why we're working to bring that education there. It just makes it a lot easier for us in general. And so I think I answered the first part and where do I see this research progressing? I think I tied in on that too, I think I caught that 1. It'd be interesting to see the relationships coming forward that would validate the hard work that we do. You get that information out to people.

Natalie Reidiger : 24:32

Well, that's great as even as somebody who doesn't avoid gluten, I thoroughly enjoyed this study and I've learned a lot. Yeah. It feels good to validate, you know, people's experiences and to hear the struggles in the health care system and eating out. So I think this is an incredibly important topic and 2% is not small. It sounds small, but it equates to many, many people... thousands... hundreds of thousands.

Christa Dubesky: 24:59

That's 2 in 100.

Natalie Reidiger : 24:59

So I do think this is really important and I, and I hope to continue doing work in this area. We were so excited to be able to share this, some of the findings in this podcast, and we also have an infographic that's also on The Manitoba Agriculture and Food Knowledge Exchange website, along with this podcast. So please go check it out and thanks so much for listening and thank you to Christa and Anne for joining me here today to discuss our research. So thanks again and take care.

Christa Dubesky: 25:27

Thank you.