Chapter 1: What is the main topic discussed in this episode?
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And this month is Celiac Awareness Month.
Around 78,000 people in Ireland are living with undiagnosed celiac disease. We're going to talk through this along with some of the symptoms now to keep an eye out for. I'm joined by dietitian with the Celiac Society of Ireland, Sarah Kioser, you're very welcome to the programme. Good morning. Thank you for being with us. So many people living with this thing and they don't know it.
And I think that will be surprising for a lot of people listening to this because you always think, well, if you're celiac, you're going to know about it because there are going to be certain things that really don't agree with you.
So this is the thing a lot of people would like as you say assume sure I'd know I'd have it and I think you know 30 years ago we used to talk about celiac disease as it turned up in children you got lots of diarrhea you got weight loss it was very obvious. What we now know is that that is the really severe end of it in terms of symptoms and it's usually where it has progressed.
What we now know is that the symptoms can be outside of the gut really an awful lot of them would be outside of the gut and you can actually have celiac disease and have what looks like a perfectly healthy gut. So you can have things like mouth ulcers, poor tooth enamel, very specific skin rashes, hair loss, migraine and infertility can all be signs of celiac disease.
Infertility as well.
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Chapter 2: What is Celiac Awareness Month and why is it important?
And it's only when you do the growth chart. And what I'd always say to parents, when was the last time did you have to buy them shoes? Because I've two kids, when they were five, six, seven, you know, 13, you were buying them two pairs of shoes a year because they were just growing out of them.
If a parent says to me, do you know what, they haven't grown out of shoes in a year, 18 months, two years, that's a child who's not growing. And that's where you have to go to the doctor and ask for the growth chart, not just an eyeball of do they look okay. Are they actually tracking on their height and their weight for their age is really important to do.
And celiac, I mean, literally it's a simple blood test, but it's not a standard blood test. People will tell me, oh, my doctor did bloods. Just did they check? Did they actually check for celiac? It's not a standard one that's done.
Chapter 3: How many people in Ireland have undiagnosed celiac disease?
And is that the start then of the diagnostic process?
That's the beginning. So in children, if the blood test is high enough, if it's 10 times over normal, that's pretty much diagnostic, although with kind of with a gastroenterologist to see it. With adults, we would follow with a biopsy and the biopsy is the camera down endoscopy. And it's very important.
Chapter 4: What symptoms should you look out for regarding celiac disease?
Again, I'd have patients say, oh, I have the camera down, but sometimes they only went as far as the stomach and they didn't go into the small bowel and take the biopsy. So, you know, it's really important to make sure they took the four biopsies there when they were doing it. But for adults, we like to do the biopsy with that and really just confirm it.
OK, and this listener whose son was diagnosed at 13, they're just saying how difficult his life has been, what a challenge it has been. So when he was a teenager, he couldn't go out and eat with his friends and have pizza and chips and all the rest. He couldn't eat school meals, can't eat at the canteen in college or work.
Travelling is really hard, stomach issues now, even though he follows a strict diet. What is the treatment like and living with the disease?
So the only treatment at the moment is a strict gluten-free diet and the emphasis on strict. And what I would, I work obviously the last eight years with the Celiac Society and I do the Celiac Clinic and I would regularly see people who are still having symptoms. And when we go back in, there's usually just tiny bits of gluten. And it's a thing that a lot of people miss.
Like if you're celiac, you have to be as strict as if you had a peanut allergy, like tiny, tiny, tiny bits of gluten will be a problem. So people need a toaster that has never had ordinary bread in it. You know, if you have fried onion rings in a deep fat fryer, you can't then use that for chips because the oil has gluten in it and the gluten is going on to the chips.
So it's really that's where the difficulty, for example, with eating out is. And some restaurants are absolutely fantastic and it's definitely worth the conversation. Travelling can be difficult, you know, accessing things like gluten free food at airports can be a real struggle for a lot of people. And I think the biggest thing is a lot of people think it's a fad.
They think there was a very big gluten free fad there about 10 years ago.
Yeah, and do you know what? I was going to say to you, I've never seen as many items on menus and in shops that are gluten free. You know, because of that, because lots of people decided that they weren't eating gluten for no reason, really.
You know, fans come and go, but like... I think it's kind of done two things. The fad did increase the number of gluten free products available, but it also led a lot of people to roll their eyes when someone says I'm celiac because they often equate them as being a lifestyle choice. Now, you can have a non-celiac gluten intolerance. It's a very definite thing.
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Chapter 5: How can celiac disease affect fertility in men and women?
We've lots of posts on that, so definitely follow us there. And that also gives people information about events that we're running throughout the month and throughout the year with that. But you can also contact us directly. Our email is info at celiac.ie and we've people there who'll be able to respond to you, give us a ring, send us an email, DM us on Instagram with that.
You know, it's been brilliant to be able to have the whole month this year and we're delighted that Promise Gluten Free have been sponsoring for us again this year, which is great. But there's so much information out there and we run a celiac clinic. I run the clinic there. And we do a lot of events for adults, for children.
We have chef and food advisor to give people advice about, you know, we do catering training and really just the support for people with celiac disease that they need.
Because it's a big, big lifestyle adjustment, isn't it? It's a huge change.
And what's interesting in Italy now, they are now testing every single child in Italy for celiac disease. They're the first country to step up and go. It's time to do it because we miss so many. And we think it's about one in 50 people in Ireland have celiac disease.
Would you like to see that happening here?
I would love to see that happening here. I think it's definitely time to do it. And I think once we get the first results from the Italian screening, I'd say in the next 10 years, we'll start to see it in countries around the world.
Sarah, thank you very much for coming in.
That is Sarah Keogh, who is a registered dietitian with the Celiac Society of Ireland.
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