173: Coeliac Disease is not Gluten Intolerance nor Food Allergy. We clear out the Confusion

Rosie (00:00)
How are you? Yeah. Yeah.

Roula (00:00)
Rosie, hold on, hold on. Before you

me how am I, I want to know about your coeliac reaction. Because what is that? You know, we talked about my migraine the other day.

Rosie (00:11)
There could be an episode

here, yes.

Are you ready for story time?

Roula (00:19)
Story time it is. Shoot. Fire up. How do you say?

Rosie (00:20)
Okay.

I don't know.

Roula (00:25)
Start!

Rosie (00:27)
So listeners, I think I might have mentioned this, I don't know, but I have coeliac disease, which means my body, when it is exposed to gluten, which is a protein, decides to attack itself. So it's an autoimmune disease, and when I eat gluten, ⁓ it makes me very sick. Now, so I have to have a gluten-free diet, and it is very strict. For example,

Roula if I was to come to your place and you made ⁓ some bread, for example, you know I'm coeliac, so you wouldn't give me that bread, but say you touched that bread and then you then touched my gluten-free bread and gave that to me, I could react just because your hands had touched your bread. So it can be less than 10 milligrams exposure and I could react. ⁓

And this is getting very boring, isn't it? Let me get to the point. I have to be careful. No? Okay.

Roula (01:31)
don't think so. There are many people

who have the same what do you call it illness? Disease? Autoimmune disease? Yeah.

Rosie (01:38)
Mmm. Yeah, it's a disease. Yeah.

Yeah, so it's different. It's not an allergy. It's an autoimmune disease and it's not an intolerance. Not that. So I have to get really good at reading labels because many ingredients contain gluten that you wouldn't think. So soy sauce has gluten. ⁓ Herbs and spices, even though the ingredients aren't gluten.

it can be exposed to gluten because of the factory or sometimes they add gluten or flour so it doesn't clump. And if a product says may contain gluten, I don't need it because that means there could be cross contamination. Now recently I have discovered a very delicious iced coffee since moving to this location. I don't really like coffee.

except for some reason I tried this iced coffee. Amazing. my gosh, I'm addicted, Roula. Like, I love it. And recently I've just been having really bad skin, like pimply, I've been bloated, like I was wearing a t-shirt the other day and my stomach was pushing out on the material and I thought, have I put on that much weight? And I've been really tired lately and just all these things. And itchy, well, yesterday.

I bought an iced coffee. I drank said iced coffee and a couple of hours later I was really itchy and I was talking to a friend and I'm like why am I so itchy? And I went away. I was lying in bed just on my phone relaxing. I fell asleep with my phone in my hand. I was that tired and then had the deepest sleep ever. And it occurred to me, my god, I think it's the iced coffee.

That was the only thing I had yesterday and I reacted how I usually react if I'm exposed to gluten. So I get itchy skin, pimply, bloated, very tired. There are so many different reactions. You can have the diarrhea and the vomiting and all sorts of things. So was like, shit, it's the iced coffee. And then I start thinking back going, well, I've started drinking more iced coffee and all these symptoms have been around.

It's the fucking iced coffee. But it does not... yet.

Roula (04:02)
Hold on, hold on.

I noticed something like few days ago, if I'm not wrong, you posted something on your TikTok account that this is the most delicious iced coffee, drink it. Is it the same one?

Rosie (04:11)
Yes, yes, it's

the same one. So I've been having it a while and I just haven't connected the dots because for me it does vary person to person but the reaction when you're exposed to gluten can be delayed. It could be instant within a couple of minutes, it could be hours later like it was for me yesterday, it can even be days. So it can be hard to pinpoint it but because it was the only thing I had yesterday.

I was like, oh my God, it's gotta be this. are no ingredients in there that contain gluten. There is no may contain gluten warning. But then I Googled it. I thought, what if other people with coeliac have reacted to this? Well, I couldn't find any stories from people who had reacted, but then I discovered that this iced coffee, there is also labeling that's slightly different. Same brand.

and on the back it has, maybe present, gluten.

And I went, what? So I called up the company and they were like, I don't know if it's gluten free, let us escalate it. Today I got an email and they said, there's no gluten in it. And I said, well, I reacted like this and I could be wrong, but it's what usually happens when I have gluten. So I'm worried there's some cross contamination. I know your ingredients are not gluten ingredients.

Roula (05:25)
Wow.

Rosie (05:42)
but there could be cross contamination. And I've been going back and forth with them. And the most recent email I got said there is no chance of cross contamination. And I thought that's it. I cannot be polite anymore. I said, look, I appreciate you helping me, but there is always a risk of cross contamination. So it's great that your facility doesn't handle any gluten. That's good. However, what if some of your workers eat gluten? Most people do. Even if they've washed their hands.

There could still be gluten on there. Hot water doesn't kill gluten, high heat doesn't kill it. Antibacterial sprays or whatever don't kill it. So if they touch some packaging, for example, it could be enough for me to react. And I said, what about the ingredients you're using? Their facility may be exposed to gluten. And I haven't had a response. ⁓ But I am on my fucking soapbox Roula. I'm looking into how much it'll cost to get this tested because I am adamant.

that there's trace amounts of gluten in here. And I'm actually really sad because I love this iced coffee. I'm so frustrated. Yes.

Roula (06:50)
Okay, Rosie, let's say

how many, after you stop drinking this, how many days you need to get back to your normal self to start feeling I'm getting my energy back, my skin is healing, I'm not bloated, et cetera.

Rosie (06:56)
Mm.

Yeah. ⁓

at least a couple of days. Sometimes it takes weeks.

So, and that's what makes this hard is it looks so different and there's different time frames so you can never be 100 % sure. But I went to bed last night, I don't even know, usually you know this, I'm usually up at like 1am, 2am, 3am, not last night. I slept, Tilly woke me up, I took her out for the toilet, went back to bed and I woke up at 2pm.

and I was still exhausted. So I have been awake not even three hours. ⁓

Roula (07:51)
very unusual for you, totally unusual.

Rosie (07:55)
I mean I like sleep but yeah I'm just exhausted and frustrated. Yeah, yeah, yeah. So it's just hard and I put a video on TikTok and a few, someone commented who has coeliac. They said

Roula (08:01)
You would be working on the van and doing something. It's not, yeah.

Rosie (08:17)
I react to dairy products even though they don't have a Maycontain warning and there's only one brand this person can have in dairy that they don't react to. And I'm like, well this is it. There is something going on there. And I think why I'm on my high horse is yes, I'm annoyed I got gluten, but there's other people and what?

I could be wrong, I just have to say that, but I'm assuming I'm right. What I would love is this packaging to have a May contain gluten warning. That way people like me with coeliac won't have it and they won't react because the damage can be irreversible. It can lead to cancer, ⁓ you know, cause it's an autoimmune disease and yes, that's not going to happen from one exposure, but I have been having so much of this and it's just...

Anyway, blah blah blah blah blah. Celiac disease is frustrating

Roula (09:15)
So what do you eat? How do you, if I say sesame seeds, do they have gluten?

Rosie (09:18)
you

They don't, but I haven't bought sesame seeds in a long time because the label usually says may contain gluten.

Roula (09:31)
so you cannot make the zaatar

Rosie (09:35)
Maybe I need to grow my own. I don't even know how they grow with.

Roula (09:37)
Yeah, your own sesame seeds. I don't know how they grow.

Yeah. Okay. You're telling me now that whatever you eat, you read the label, you get into details so you know what you need, how you can eat something that won't have a reaction. This is exhausting.

Rosie (09:48)
Mm-mm. Yeah.

Yes, yes, yeah.

It can be, and I've caught myself out before. You know, I'm very vigilant with this because I don't want to be feeling sick and I don't want to damage my body. And sometimes brands change their recipe. So I usually make my own hot chips or fries, whatever you want to call them, in the air fryer.

But sometimes I'm lazy and I buy the frozen ones. And there's one brand that is gluten free by ingredient and I use. so once I know it's safe, I don't even look at the label. Well, they changed their recipe. I got glutened and I was like, it's got to be the chips. And I looked at the packet like I know this is safe, but it had changed and it had a may contain gluten warning.

Roula (10:49)
⁓

Rosie (10:50)
So it's just, you have to be vigilant. And it's frustrating, but it's worth it to be vigilant because it just, no. Well, I mean, look, you can, but it's very risky. if you go out with friends, they'll say, yeah, they have gluten-free options on the menu. And I'm thinking, well, that's great, but it's made in a restaurant that handles gluten.

Roula (10:58)
But you can't eat out either.

Rosie (11:16)
And most people, chefs included, don't understand coeliac disease and cross contamination. So they will use the same utensils, the same frying pan, everything to make so-called gluten-free food. So it is exposed to gluten and I will react. But people don't understand that. there are a few places that understand they have a separate area of the kitchen, separate utensils.

Roula (11:31)
Yes.

Rosie (11:46)
And there's a special app I have where people with coeliac disease review places. And so if someone with coeliac disease has been to this place and go, yep, I ate there, didn't get sick, da da, I'll go, okay, I'm gonna try it. But I will always ask them the questions. Is it prepared separately? Da da da da da. And even then, there's a risk, because there's gluten in the kitchen. But Roula every now and then, there is a place that is 100 % gluten free.

And when I find those places, I go nuts. I'm like, I want everything on the menu. I'm eating every day here for a month. Like it is just like a unicorn. It's very exciting. for someone who loves food so much, I have found it difficult. And I like eating with the people I love and sharing that. And like when we meet, Roula, I'm going to want to eat delicious food. I want you to cook for me, but we're going to have to be very careful.

Roula (12:43)
You know, this is such an eye opener because I don't know what coeliac disease is. But if someone and after you explained to me, I can also imagine for a person who have coeliac disease is that it's hard for them to explain it to people. And it's hard for the me, for example, who's listening to take it seriously or I'm not saying that it's hard for me to take it seriously. It just has so many details and specific

Rosie (12:48)
Mmm.

Mm.

Yes. Yes.

right.

Mmm... Mmm...

Roula (13:13)
handling

etc that persons who don't want to take make the efforts will find that it's all it's too much effort I'm not gonna do it or whatever you know it you know what I mean

Rosie (13:22)
it's hard. you know what else happens? They think I'm,

I do. And what else happens is they think I'm just being dramatic. They're like, as if you would react to that. Mm-mm.

Roula (13:31)
Yes, I have a small example. have a very

small example, which doesn't compare to your Celiac disease. Since I'm born, I cannot drink milk or like I can't eat pancake, etc. I didn't know what that is, but my mom used to tell me, I don't know how I raised you without milk. I gave you tea, I give you other stuff, I'm yogurt. But this is what I remember.

Rosie (13:44)
I didn't know this. Okay.

Yeah.

Roula (13:59)
and I still cannot drink milk. It just hurt my stomach so much. And I had for years of pain in my intestines and no one knew what it is back then. So I was careful with what I eat my mom managed it for me without knowing what that is.

Rosie (14:01)
Mmm? Mmm?

Wow. Yeah.

Mm.

Wow,

right, yeah.

Roula (14:19)
Only recently,

like in a few years that I started hearing that people have allergy. My God, it's on the top of my tongue. can't remember what it is when you. Yeah, lactose intolerance, et cetera. And when I want a cappuccino, I want it with oat milk or soya milk. And since few years, this become trend and hype. And I'm happy because finally I can have a cappuccino without milk and that doesn't feel sick.

Rosie (14:26)
Yes. Lactose?

Right, yes.

Yes. Right. Yes. Yes.

Roula (14:50)
And I noticed when I asked for this in places that don't have it, they think, she's coming from the city. What a fucker. She just want her plant based milk. No, I mean, I really didn't know about my suffering with milk until I tried the plant based.

Rosie (14:54)
Mm.

Yeah, exactly.

Yes. Fuck off. There's a... Yeah!

⁓ it's difficult,

isn't it? And the other thing is people might go, yeah, I'm gluten intolerant, but being intolerant is different. It's different because people with an intolerance generally, again, I'm generalizing, but generally can tolerate a certain amount of gluten and it's more. So for example, the cross contamination risk, they could go to a restaurant,

that knows nothing about cross contamination. And if it's using gluten free ingredients, even if it's cooked on the same surface as gluten stuff, they'll be okay. But for someone like me, I won't be okay.

But then it gets more complicated because some people with coeliac are asymptomatic. So they won't show symptoms, but their insides are getting destroyed. So it's just like, it's so complicated and it's so misunderstood, but it has such a big impact on so many people's lives. And apparently only 20 % of people with coeliac disease are diagnosed. So many people don't even realize. Yeah.

Roula (15:59)
⁓

don't know, don't even know.

So to conclude this, can say and dear listeners, go back to that episode. Headache is not a migraine and gluten intolerance is not coeliac. So let's make these clear. These are two different things, four different things. Thanks, Rosie I'm so glad we talked about this because

Rosie (16:31)
Exactly. ⁓

Exactly.

Roula (16:39)
You know, we talk about so many important things in life and unimportant, and this is an eye opener. Yeah.

Rosie (16:43)
⁓ I'm glad you found it useful. I

feel like I've spoken a lot, but it is something I'm passionate about. So thank you for asking the question.

Roula (16:50)
Finally, I have something

where you're only speaking. Thank you so much. Thank you for listening, guys. Bye.

Rosie (16:55)
You're so welcome.