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Episode 57: Jan Steele - Celiac Disease
31 Plays1 month ago
Jan was diagnosed with celiac disease at just three years old. She shares her experiences, from childhood challenges to her current work in France, where she runs a gluten-free teaching kitchen. Through the conversation, Jan illustrates how celiac disease is not a limitation but an opportunity to embrace a mindful, health-oriented lifestyle. She offers practical advice, like focusing on whole foods and learning to cook from scratch, while also advocating for better awareness in restaurants and among healthcare professionals. Her positivity shines through her words, offering encouragement to anyone navigating similar journeys.
The song that Jan selected is Where I belong by Kurt Harris.
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Transcript
Introduction: Jan Steele on Celiac Disease
00:00:00
Speaker
Hi, I'm Sylvain Bertolo, and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who leave them every day. My guest today is Jan Steele, and we're going to talk about celiac disease. Hi, Jan. How are you doing? I'm well. Thank you for having me, Sylvain.
00:00:20
Speaker
Well, thank you for joining. I'm very excited about our discussion because I know we're going to talk about diet, but also I know you're in France and it's always nice to talk to someone who's in my home country. Right. As you know, I love starting with a song. So what song did you choose and why?
00:00:44
Speaker
So i I found this very difficult because my first career was as a music teacher and so I love many, many, many, many, many, many songs. But um there is one that I do listen to often and it's a Kurt Elling song called Where I Belong.
00:01:01
Speaker
And what I love about it is the chorus. So he goes through and enumerates all of these different sort of characteristics of things that happen in his life. And then how those things remind him that he belongs where he is, in fact, and that it's all very normal and that everything that he's encountering is meant to be and that it's all fine. So I find it just a very serenity building song.
00:01:28
Speaker
no Yeah, that's nice. And I know it's a tough question. i would I would struggle myself to answer that question. That sounds very nice. So we are talking about celiac disease.
Understanding Celiac Disease
00:01:43
Speaker
First of all, to start with, would you be able to tell us how it affects you? So celiac disease, in a nutshell, can be described as an intolerance to gluten.
00:01:57
Speaker
um And it's a little bit more involved than that, but at the end of the day, that's what we're talking about. The main adjustment that people have to make to their lives is that they need to adopt a strict gluten-free diet as a result of being diagnosed with celiac disease. And do you know why gluten is not good for your body? So the more I read about gluten, the more I'm convinced that it's actually not great for any of us and that the human body actually does struggle with digesting it in every instance. So there was a a study that was done by one of the leading celiac disease researchers um who demonstrated that in every human or in all of the cases case study participants in their intestine
00:02:50
Speaker
gluten triggered a relaxing of the tight ju junctions. So when we talk about our digestive system, we have to imagine that the digestive system is actually on the outside of our body, right? From the mouth to our anus, it's like a garden hose for all intents and purposes. And anything that's inside that garden hose is still in fact on the outside of our body.
00:03:15
Speaker
right And our intestine our small intestine becomes the interface that is supposed to be just permeable and enough to allow through the particles that will become the nutrients in our body.
00:03:28
Speaker
and everything else should be kept out. And what gluten does in all of us is it relaxes the tight junctions, which are like the gates that allow things in or out of our body. And so you can imagine that if those tight junctions are are relaxed, we can imagine that that's potentially putting us all at risk for things coming into our body that maybe shouldn't have been there.
00:03:56
Speaker
And so this one study demonstrated that all of the participants had a relaxing effect as a result of gluten. And then most people, I mean, anybody that didn't have any kind of a sensitivity, their tight junctions then did in a very fairly, a relatively short amount of time go back to being tight junctions. And so the relaxation effect was eliminated and then they, you know, their, their intestine was sealed back up.
00:04:22
Speaker
In someone like me with celiac disease, what's going to happen is not only are the tight junctions going to relax, but they're going to stay relaxed. And so I'm going to have a more frequent entering into my body and triggering that of my immune system of things that shouldn't necessarily be there. And then my what happens is my immune system actually goes so far as to begin to attack the mucosal lining of my intestine in the first
Triggers and Genetic Markers of Autoimmune Diseases
00:04:50
Speaker
place. so it it Because celiac disease is an autoimmune disease, and so where my intestine becomes the the tissue of my body, that my intestine my immune system will then start attacking. And so there will then be damage on my intestinal lining if I continue to consume gluten.
00:05:08
Speaker
Okay. And that I imagine is painful and then leads to further complications. Well, and very dangerous in the sense that your your absorption of nutrients happens there and it only happens there or mostly happens there. And so, whereas an intestine that is healthy is supposed to be lined with tons of cilia that amplify the surface area of the absorption space.
00:05:37
Speaker
in a damaged gut, the cilia are all beaten back. And so the ah the absorptive surface is very, very, very diminished. And so whereas in a healthy body, if we laid it out flat, this the absorptive surface is supposed to be similar to like a tennis court in size, in a very, very, very damaged gut, it can get to be the size of like a ping pong table.
00:06:01
Speaker
And so you can see how well then your capacity to absorb nutrients is so diminished that even if you had a very immaculate diet and who has that diet, you're not getting the nutrients that you need in order to thrive. Yeah. Yeah. Okay. So when were you diagnosed? I assume that's something you're born with. Is that right? Well, no, autoimmune diseases are are curious because they can crop up as a result of many, many, many different things.
00:06:29
Speaker
One of the leading researchers on autoimmune disease, Dr. Sarah Valentine, she describes it as a sort of a trifecta. So you've got ah a hereditary component.
00:06:42
Speaker
you've got an environmental component and you've got day to day lifestyle component. Um, so, you know, maybe a third of the determining factor of whether or not you develop an autoimmune disease comes from your genes. And in the case of celiac disease, they've managed to identify that HLA DQ two and DQ eight are the two alleles that are indicative of celiac disease. and So in a family where you've got someone who's diagnosed with celiac disease, often what they'll do is they'll get everybody else in the immediate family to at least check for those genes to see do you have a propensity for this? Because there's lots of people that have those alleles but don't develop it. And then there's other people, but if you don't have those alleles, you won't develop it.
00:07:33
Speaker
and Okay, I see. So it's at least a first step of seeing, okay, well, do you have the propensity for it? And then if so, maybe you want to be at least careful in going forward, if if if ever you have a a period of intense stress in your life, and then you start feeling poorly, maybe you check to see if the antibodies are happening or you know,
00:07:52
Speaker
because you do have a susceptibility for this disease. Yeah, I think. and So what how old were you when you were diagnosed?
Jan's Diagnosis Journey
00:08:01
Speaker
So i was I'm a bit of a unicorn in the celiac disease world because I was diagnosed at the age of three, which for my generation is quite early.
00:08:10
Speaker
Most people tend to be, die even today, most people tend to be diagnosed later in life as a result of a prolonged period of illness because it is a disease that's kind of tricky to diagnose. It's got symptoms, clinical symptoms that are very diverse but that are also very attributable to a bunch of different diseases and so it's kind of one that doctors seem to not think of immediately.
00:08:37
Speaker
ah Is it something you can test only through genetic testing or or do you have to try the diet to confirm that you have cenae? So it's a bit of a controversy I would say or there's a bit of a dichotomy between the conventional wisdom or the conventional medical model and maybe the more functional medicine model. um so The way that they test for celiac disease typically is, first of all, we can do that genetic test to see if you've got any of either of those two alleles or both, but they don't typically do that. we you know Typically, in a conventional medicine model, you don't test until you've got an issue.
00:09:19
Speaker
And so if you're clinically presenting with different symptoms, then what they'll do is do a blood test and look for the antibodies to gluten. And so then the problem, if someone adopts a gluten-free diet before having done that test, then your antibodies will necessarily you know, even if you are celiac, if you've now stopped eating gluten, your antibodies will then diminish. And so that'll corrupt the measurements to the point that maybe they won't diagnose you. Like if I took a the blood test for celiac disease today, I would not show up as having celiac disease because I don't eat gluten and so I won't have those antibodies. So you do in fact need to be eating gluten regularly in order for that test to function properly.
00:10:04
Speaker
the once So if you get a blood test and it is high with antibodies because you've been eating a gluten-free diet or a gluten-containing diet and you are looking for a diagnosis, then if you've got a measure that is quite high, they may then confirm the diagnosis by doing an actual biopsy of your intestinal tissue and look for the damage that we were talking about.
00:10:28
Speaker
That's typically how it happens. So when I was three, that's what they did. They did the biopsy and okay and they see that there's damage. Then you go on a gluten-free diet and then maybe even six months later you do another biopsy to confirm that yes, it's been improved.
Symptoms and Diagnosis Controversies
00:10:43
Speaker
The one exception I guess is in children where the biopsy is fairly intrusive. And so often they can corroborate certain, like I'm not a doctor. I don't know what the standards of practice and stuff are. I'm not claiming to know you know, what all the rules are, but this is kind of what I'm hearing around me and this is certainly how it happened for me. Typically today or often today, pediatricians are are sort of a front line. They're getting quite good at diagnosing celiac disease and often it's because there's a ah failure to thrive or the the child will stop growing. And so if there's a real sort of break in the growth curve,
00:11:23
Speaker
that's one of the things that they will then test for the antibodies. And just with those two pieces of information, the child has stopped growing and they've got high antibodies to gluten, then they will do the diagnosis and forgo the biopsy.
00:11:37
Speaker
Often that's what will happen for a child. But for an adult, they will want to do the blood test for antibodies plus the biopsy. Yeah, okay. You just mentioned in children failure to thrive as a symptom. What do you mean by that?
00:11:57
Speaker
Yeah, because it is kind of a vague term, isn't it? I'm not, I don't know the clinical definition of what that means, but in my head it's, so what my mom tells me is that Um, I was just poorly. I was tired all the time. I was anemic. I was systematically and and anemic. She was giving me, you know, iron supplements and still I was anemic and then more iron supplements and still I was anemic and now an adult dose of iron supplement and still as a three year old, I'm anemic. So she, she kind of kept taking me back to the doctor and said, no, you know, she, everything is coming out pretty much normal except for the iron. And she said, but you know,
00:12:38
Speaker
It doesn't make sense that she could still be anemic if I'm giving her an adult dose and she's a three year old and still she's anemic. So there seems to be like an underlying absorption problem. And so it was my mom that kind of continued to push. And we were just fortunate enough that there was a ah doctor, this was in Calgary in Canada. And we were just fortunate that there was a doctor in the hospital who I think he was of African origin and he knew this disease because it's a disease that at that time certainly was very poorly known and certainly people didn't test for it. And even today they say that up to 50% of patients with celiac disease go undiagnosed
Global Gluten-Free Options
00:13:17
Speaker
for a period of up to 10, 15 years. wow okay And so to to live um with malabsorption, so essentially that's what's happening is you're living with malabsorption for 10 to 15 years, you can imagine
00:13:30
Speaker
all of the other problems that you are created as a domino effect because you're you know just becoming um deficient in this nutrient and then deficient in this nutrient and deficient in this nutrient and you know those things in and in and of themselves cause other problems.
00:13:47
Speaker
ah Yeah, it's interesting. I i mean, I've heard about celiac, obviously. I think a lot of people have, but you don't really realize the impact yeah it has or the po potential impact it can have. So do you have any treatment? So the treatment that, the only treatment that is prescribed today is the strict gluten-free diet for life. And that was true in my in my time as well. yeah And so the difficulty there is that doctors then say, you know, good news. We've identified the problem for you and all you have to do... is Adopt a gluten-free diet and so you sort of you're sitting there and you feel relieved do you think oh wonderful We've got a name for it and we've got a solution so and it seems so simple and then you go home and you think wait What's gluten and where is it and how do I and what and what do I need to do and then you realize oh my gosh? It's in everything. How do I avoid this? Mm-hmm? So yeah, that's when the new learning curve begins
00:14:46
Speaker
Yeah, I always feel sorry when when you go to a supermarket, and here I'm talking about England. I don't know where it is in other places. And you look at the gluten-free shelves. It's a very, very small section of the supermarket. And like you say, it's in so many products. It must be quite hard to find things to eat. or How do you manage that?
00:15:15
Speaker
Yeah, well, I mean, I think the good news is that in fact, if we're talking just about natural food, everything is gluten free. So all of the meats, pure meat is gluten free. All of the vegetables, pure vegetables are gluten free. All of the fruits, pure fruits are gluten free. Where we come into problems are when we start looking at the post agricultural model where we start leaning into the grains, right? Because it's the three foods that can, the three ah grains and cereals that contain gluten are wheat, rye, and barley.
00:15:54
Speaker
Now there are some other grains that are susceptible to cross-contamination to a point that it can be problematic for celiacs too and those are oats and millet. um There's something about ah the ways in which oats and millet are cultivated and harvested and stored and I don't know if it's in the silos or is it on the In the production line, is it the machinery? Is it that a field of oats grows typically next to a field of wheat? I don't know. I'm not a farmer. so But those are the grains that we are told to be careful to be sure that we are looking for a gluten-free label on gluten-free oats, for example. I wouldn't i wouldn't recommend that celiacs eat just oats that are not labeled gluten-free.
00:16:42
Speaker
And in fact, when I was diagnosed, oats were among, it was on the list of things to avoid. When I was diagnosed, I was told to avoid wheat, rye, oats, and barley. And then over the course of my lifetime, ah people have realized that the protein that's found in oats is slightly different from gluten and it's not actually gluten. And so it should be allowable for celiacs. Now there's a ah portion of celiacs who do continue to react to oats, but if it's a gluten-free oats, the large majority of celiacs should be able to tolerate those.
00:17:12
Speaker
Yeah. So is it something that, so for yourself, you were diagnosed at three, was it easy to have a gluten-free diet at the time or not? Well, I would say that it was easier perhaps than now. I mean,
00:17:31
Speaker
It's not true. it's It's not, it was never easy. And I think my mom would, I mean, I didn't have to do any of it, right? I was three. My mom had to do all of this work. So was it easy? No, but it was easier in the sense that at that point, I mean, we're talking about 1979, 1980, like this is the age of the dinosaurs, right? So it was a time when people still cooked.
00:17:52
Speaker
And you made your own food and so because you're making your own food, you have control over what goes in what and it's less of a big deal. Today, I think and what I'm observing around me is that the act of cooking is less and less common and more and more people are relying on industrial products. And as soon as that's the case, now it's trickier.
00:18:17
Speaker
Yeah, a I completely agree. How old were you when you moved to to France? Oh, so I came to France as an adult. I left Canada about 20 years ago. So 2004, something like that, 2003. I first went to the States to do a master's and then I went overseas to do international teaching.
00:18:42
Speaker
um teaching in the international school circuit and then when I met my husband I joined him in France for a while and then we continued and we went over to South Asia and then his job actually brought him back to France each time in between missions but at the at that point I was touring the international schools and working in international schools so I mean I've lived in about nine different countries over the course of my life and we've just settled permanently now in France starting in 2018.
00:19:10
Speaker
Wow, impressive. and do you see Have you seen any differences between those countries in being able to have a gluten-free diet? For sure, for sure. Yeah, and curiously, the most um the place in which I had the most vast choice the the greatest selection in gluten-free products was Beirut. Really? Very strangely, yeah. I think it's part of the the diaspora, you know, the the Lebanese diaspora is everywhere and then also they come back to live in Beirut sometimes and when they come back to live in Beirut, they like to have their products that they knew from Switzerland and Italy and Canada and wherever. And so there's just this plethora of
00:19:54
Speaker
gluten-free products that come from Italy and gluten-free products that come from Switzerland and gluten-free products that come from France. So it was just fascinating to to taste all of these different things and to compare like pastas and you know to be able to have access to an Italian gluten-free pasta was just wonderful. Yeah. um But yeah no definitely every different country does it better or worse and I think broadly speaking France is perhaps the least um up to date. um There seems to be real resistance still and there's still a lot of stigma with respect to the gluten-free diet here in France. I don't know if it's the bread culture or if it's just strong norms and so we're resistant to diversity or resistant to change. I don't know.
00:20:40
Speaker
the the French cuisine thing too. There's a lot of authority that chefs are attributed. And so then the chef is supposed to decide what are we going to eat today? And I have to go in and say, yeah, but you you don't get to decide because you don't know what I'm allergic to and you don't know what I'm sensitive to. And so thank you, but no, I'm not going to eat that and I can't. So there's this sort of back and forth that
Cooking Gluten-Free in France
00:21:03
Speaker
doesn't seem to happen as much elsewhere. Yeah.
00:21:06
Speaker
Well, that's my opinion now. I think there's there's a and still very strong culture and and pride in food in France. Sure. and And I think I experienced it myself because I have gout, so I have a specific diet that I need to follow as well.
00:21:26
Speaker
And it is very difficult to find the right food for me. And for me, it's just a vegetarian diet. I don't struggle finding the right food in supermarkets, but as soon as you try to go to a restaurant, for example, you have very little options. right And ah it's interesting because what I've found is that despite French cuisine being regarded as one of the best in the world, very little of that cuisine is is actually vegetarian. So then then when you think about gluten, I can imagine that a lot of the dishes you would find in a restaurant can't be gluten-free.
00:22:16
Speaker
Sure. No, and it's very counterintuitive because we could so we could imagine that you know if the bread culture is very important as an aspect of our culture, then we could have adopted a different approach, which would be to ensure that even the people who have a sensitivity to gluten, ah be able to enjoy the bread culture that is such a huge component of their culture. And we could have then invested time and energy in making sure that that be the case, right? So we could have had a real proactive, oh, well then yes, we do believe that this bread culture is a really important component of our culture. And so we want to make sure that everybody, every French person has access to it.
00:23:01
Speaker
that's not the way we've gone. We've gone kind of the other way which is that we have these norms and there doesn't seem to be a lot of recognition that people are different and that in fact everyone is different and everybody's needs are different and so it's really difficult I think to be diagnosed with celiac disease as a 40 year old person in france who has come and wants to feel like they belong and so I've actually come to open a gluten-free teaching kitchen here in france and that's one of the things that I'm able to bring to the table here is that I'm Absolutely. I have no Complex about being celiac. I mean, I'm I'm celiac in the way that I have brown hair You know what I mean? It's like it's been a part of my identity forever. And so when people
00:23:50
Speaker
Perhaps try to want to imply that there's a problem with being celiac. I just don't hear it because I yeah, whereas somebody who's diagnosed as a 40 year old is feeling really problematic, you know, they go to a restaurant and they feel like they're they're being a pain or they're being um picky or they're being difficult for the waiter and for the kitchen and for and i'm like ah no it's a service industry and so they can either provide the service that is going to feed you and you're gonna then in return you know provide them with some money or not and and it's fine and everybody can choose where they want to appear on that spectrum but i don't think that that we should for a second imagine that we're being a problem when we're trying to support the businesses that are around us.
00:24:38
Speaker
Yeah, but so these people are diagnosed, you know, and they feel like they have to give up everything that they love in the world. And this really important aspect of their culture, which is the bread culture, because there's very little available. I mean, more and more, don't get me wrong. I mean, certainly in the last 15 years that I've been in and out of France, things have changed for the better for sure, but it's slow going and it's, um,
00:25:04
Speaker
not, the quality doesn't always follow. And like you said, the in certainly in the supermarkets, just in the broad, you know, the gluten-free section of the supermarket, the products that are available there are not great products. I mean, you know, a store bought gluten-free bread is just not worth eating. I think especially if you are a person who grew up eating an actual baguette from an actual French Boulangerie. I just, I don't think that you can feel what you want to be feeling while you're eating that piece of bread. It's no. So the solution that I recommend to people and that I'm really trying to promote as a message broad scale is to say doctors, you know, if we're diagnosing celiac disease,
00:25:50
Speaker
the prescription that is required. Yes, there's no medicine for celiac disease, but what is required is a series of cooking classes so that you can learn the basics of how to feed yourself now in a way that will be satisfying and nutritious and delicious. you know like I think it has to you have to put a little bit of time and energy into going back to the basics and learning and and taking this as an opportunity to reevaluate how did you eat and how do you now want to eat because you didn't get sick like this overnight. um And so if you do nothing but replace all of the kind of crappy gluten-containing foods that you were eating with now crappy gluten-free versions, I don't think you're going to feel better yet.
00:26:40
Speaker
um And I don't think that it's actually going to solve the problem. I think that maybe this would be a great opportunity to say, hmm, how did we get here? And maybe do we want to sort of backpedal on some of the poorer decisions that we've been making just out of convenience and out of, you know, lack of time, lack of energy, lack of whatever. But I think that's not the message that's being conveyed by the doctors during diagnosis. And that's my biggest frustration is I feel like people are being told that it's just fine to just go and lean into that gluten free aisle in the supermarket. But I don't feel like that's going to be either satisfactory or nutritious or delicious. So yeah it's like it, it loses on the entire list, right? It fails on all of those aspects.
00:27:28
Speaker
Yeah, it's interesting that going back to what you said, like we need to learn cooking again. And it's not that you don't have access to the raw ingredients that you need. If I understand correctly, it's learning to go back to those raw ingredients and then learning to do good food with those raw ingredients. Right, right. And it's not like people 50 years ago didn't eat good food. It's just that they made it from scratch. That's right. no And part of it, so part of it is the modern frenzy that we are all kind of that, you know, the the trap of the frenzy that we are all kind of falling into. It's one of the things that allowed me to travel as much as I did is because a carrot
00:28:20
Speaker
is identifiable whether I'm in Kuwait or I'm in Lebanon or I'm in Canada,
Improving Restaurant Protocols for Celiacs
00:28:24
Speaker
right? I can go to the grocery store and buy a carrot and know that that carrot is going to be gluten-free. When I'm into the packaged goods and I now have to rely on the language, now now I'm hooped. I don't speak Arabic enough to be able to look at the ingredient list and be sure that what I'm reading is gluten-free. But if I can buy an apple and I can buy a piece of steak and I can buy a chicken, you know? so it It saddens me to see and read um the extent to which some people who are newly diagnosed do now live their diagnosis as a bit of a life sentence o because they prevent themselves from doing so much. They prevent themselves from accepting a dinner invitation for fear that they will get sick. They prevent themselves from taking a trip for fear that they're going to get sick. They prevent themselves from engaging with
00:29:15
Speaker
you know, a restaurant somewhere just because they don't trust that they won't get sick. And I don't think that that's the way to go. I think that it's, you know, that's not going to be the more health promoting lifestyle. I think we need to be able to in include ah in our societies a space for people that have food intolerances. And and honestly, since doing cooking school,
00:29:42
Speaker
I realize that it's entirely possible and that it's not such, it's not as big a deal as people imagine it to be. yeah it's It's in fact very, very possible for all of our restaurants at every level of the budget to engage with this problem a little bit and it would improve the availability of food at every level of the budget really quite dramatically and so thereby improving everybody's you know lifestyle.
00:30:14
Speaker
Yeah. How is it received in France, your teaching school? what What's people's reaction? Well, my clients, they're the most wonderful people. they're you know i I benefit from the fact that there is such little in the way of offering in the gluten free space in France. And so people are thrilled to come and have a place where they can eat safely.
00:30:41
Speaker
where they can learn to broaden their repertoire of gluten-free recipes and their understanding of the chemistry of gluten-free baking and pastry.
00:30:52
Speaker
where they can finally maybe just even come for a holiday. Maybe they don't want to learn anything at all. Maybe they feel like they live in the day-to-day perfectly fine, but they would love to have just ah like a weekend where they don't have to think about it, you know, um because it does add to the mental load necessarily. um And so, yeah, people will come and they'll come maybe as a family, maybe they have two or one celiac child and they want to just go on a holiday where it's a holiday for everyone because, you know, if they don't come here, then typically they're going to be renting what an Airbnb so that they have their own kitchen. But then somebody has to figure out the new grocery store and this new location and the new products that are... So it's like a whole big thing, you know, and if you want to just go away for a weekend, then they could just come here. And, they you know, we benefit from being in the Sevan National Park. So it's beautiful nature. It's a spectacular surroundings. and
00:31:45
Speaker
So all of that, you know, adds to it to boot. But the whole purpose is to sort of allow people to engage with the issue as much as they want, you know, if they want to just learn and learn and learn and learn and learn and figure out how to make stuff and make a hamburger bun and make a bread and make a, I don't know, whatever, a pie and make a pazucre and make a, you know, quiche or whatever they want to make, we can make it with them.
00:32:13
Speaker
Or if they don't want to talk about it at all, but they just don't want to get sick when they're on their holidays, that's fine too and they can just come. What I notice is that it's very, I think i think it's it's sort of a relieving, it's like a relief for them to come and feel normal because we can talk it about it and we can also not talk about it. But in any event, everybody's eating around the table. Everybody's eating the same thing.
00:32:39
Speaker
There is no question as to, but am I going to get sick or am I not? The kids also who are celiac come and my kids are gluten free as well. And so everybody just, everybody just eats and everybody just enjoys a meal together in the way that they used to. Right. Yeah. Without it being such a thing. No issue, no stigma. No issue. That's right. Yeah.
00:33:03
Speaker
How would you like to see things change? Because you you talked about restaurants, you talked about, for example, boulangeries making gluten-free bread. Is there anything else you'd like to see, to see a real change for CNN? I think about it a lot. And I think, you know, obviously my one little space is not going to change the underlying issue for people in France. But I think what would really make a huge step forward is if we could agree that restaurants not only be required to
00:33:48
Speaker
So European law requires that restaurants on their menu flag anything any um item that contains any of the allergens that are listed for Europe. and So a gluten fruit so um a menu, no matter which restaurant you go to, should be flagging which items contain
Adapting Japanese Cuisine for Celiacs
00:34:08
Speaker
gluten. So that's a first step.
00:34:11
Speaker
Now it must be said that that is very poorly implemented in France right now and often what restaurants will do because they just don't want to engage with this issue is they will put on the front of their menu anything that we serve may contain and then they list the allergens and then they say talk to your server.
00:34:27
Speaker
Now the problem is is that the server has no idea. yeah First of all, what is gluten? where what you know they've they've just They've not engaged with the process all too frequently. So I would really love to see restaurants as a whole be required to develop some sort of protocol in the same way that in the UK, in Canada, in the US, protocols have been put in place to minimize cross-contamination in kitchens, in professional kitchens. And I think that that's enough. I think if we could at least get to that stage so that I could be confident that as soon as I flagged myself as a gluten-free person, a gluten-free client coming into the dining room,
00:35:13
Speaker
I would trigger a certain protocol in the kitchen that guarantee a minimization of cross-contamination. We're never gonna guarantee um because the world is not gluten-free. So we have to accept that there's a little percentage of risk that is just unavoidable. But at if at least we could make a small effort to minimize wherever possible the risk of cross-contamination,
00:35:41
Speaker
I feel like that would just go huge lengths to making life more manageable for people living with celiac disease. It would build confidence. It would require, you know, it would, it would allow us to feel like we too are welcome in professional kitchens and professional restaurants in a way that has not yet come to be generally true.
00:36:09
Speaker
There are lots of really, really great restaurants that welcome us really, really well. And I'm you know i'm not saying that every restaurant is does this poorly, but there's a bunch. There's a bunch. Yeah, yeah, yeah. Now I can imagine. It's interesting because we are hearing about diversity and inclusion. And we never talk about that aspect of inclusion not being made feel bad ah because you can't eat the same thing as everyone else. Well, that's part of inclusion. And yeah, I think you've you've explained it very well. Yeah, ah it's reachable. It's not like we're asking people to cook with things they've never seen before. That's right. I mean, I'll give you a simple example. I don't understand, and ever since doing cooking school, and i I just, I don't, I still don't understand. So in like a Japanese restaurant,
00:37:08
Speaker
Really, the one of the only ingredients that poses a problem for us in a Japanese restaurant is the soy sauce because a soy sauce contains gluten because the soy is fermented on wheat.
00:37:19
Speaker
And so there's a contamination issue. And so like normal, and quote unquote, normal soy sauce has gluten in it. A simple fix, which would, which would result in everybody being able to be served safely would be to switch out the normal soy sauce for a gluten free soy sauce, which doesn't taste different, which is not more expensive and So, you know, I was in kitchen school going, why? Why are we serving this one when we have this one? And you like you tell me, taste them both. Tell me, do do you, is there a difference? Because I can't taste the the regular ones. So you taste them. Every single person that I made, taste both of them said, no, they're totally the same.
00:38:02
Speaker
And I said, okay, so maybe it's a cost problem. maybe And so then I go into the you know the manufacturing and I look and the cost is exactly the same. And the packaging is exactly the same. And so there's no reason not to, but until you until you think about The problem of exclusion, of course, you just go with what we've always used. You don't, you know, there is no reason in your mind to go. But if in a Japanese restaurant, if we only used gluten-free soy sauce, 90% of the menu would now be entirely gluten-free.
00:38:36
Speaker
yeah Yeah, it's a case of, first of all, awareness and then understanding. Exactly. And then once you understand, you're probably going to be willing to make that change. but That's right. But that's a process you need to follow. And in certain instances, you know, the compensation or the adjustment maybe will have a cost or maybe will have, and so then that, you know, you have to work through
Encouragement for a Gluten-Free Lifestyle
00:38:58
Speaker
those issues. But certainly in the situation or in the instance where there doesn't seem to be even a cost,
00:39:05
Speaker
whether it be in the name of you know tasting or flavor or cost, like financial cost. In that instance, it really is just an awareness problem. Yeah. Yeah. Wow. Well, it's extremely interesting. And you've, you've changed my mind, not that I had a stigma or anything, but I didn't realize that a gluten free diet was so reachable. If you go back to to the source of what food is made of. That's absolutely. i mean my my I'm um constantly, I have teenagers. And so one of my one of my children's biggest frustration is that I don't buy food, which he wants to describe as food. He keeps on saying, there's no food in the house. All we have is ingredients. well and I feel very proud about that. I'm like, well, good, make yourself something. but Yeah. Well, I love asking the same question to finish to my guests. What's your happy place, the place where you feel at peace? Oh, well, I'm here at this, this town. I feel very fortunate to live in a tiny, tiny little town of 200 people where we live essentially in the forest.
00:40:20
Speaker
I have two donkeys and a couple of chickens and a barn cat, and honestly, it's paradise on earth. Wow, that sounds amazing. Yeah, it's super cool. We'll have to put a link on the website so people can find you and see for themselves. That would be wonderful, yeah. Anybody that wants to come on down, there's a great flight path between London and Montpellier, and then from there, we can come and pick you up. We're about an hour north of Montpellier in France, in the south of France.
00:40:49
Speaker
Amazing. And I know the area and I recommend it. It's amazing. It's spectacular. yeah People say to me, but you're from Canada. Canada is beautiful. And I'm like, turn around. It's gorgeous here. What are you talking about? and It's a different kind of beautiful. Yeah. I mean, it's Yeah. Well, it's been lovely talking to you. I think you're on a great mission and I'm sure people who listen to this discussion and who are celiac will feel better by hearing your conviction that being gluten-free is not an issue and and can be easily solved in a way. Yes, thank you very much. No, it's wonderful that you take the, I love the the the focus of your podcast where you're really focusing on the patient experience. And I think you're right. I think if I have one message, it's that
00:41:46
Speaker
You're going to be fine. It's totally fine. It's very manageable. Everything that you loved to eat before you were diagnosed will still be able to be eaten after you've been diagnosed. You'll just have to learn how to make a version that is gluten-free. And if you need help with that, reach out. I'm happy to help you. Amazing. Well, thank you very much for your time and I hope you have a lovely day where you are. Thank youivva you. too Take care. thank you