00:00:00: Hello everyone, welcome to this new episode of the EEG podcast.

00:00:05: It's Pratipundra here, Gastroenterologist from the UK and podcast host for UEG an amazing organization doing so much for education within European gastroenterology.

00:00:16: Now I recently covered celiac disease with Professor David Sanders.

00:00:22: That was released a few weeks ago and I would strongly urge the listeners to listen to that episode before coming on this one.

00:00:29: In that episode, mainly we discussed about diagnosis of celiac disease And he does mention The only treatment for celiac diseases is gluten-free diet Although there are new drugs in development but none of them Are ready for prime time use although We discuss quite lot On various aspects did not discuss about gluten-free diet, how to advise our patients.

00:00:55: And in my own practice I feel my own knowledge and especially the knowledge of gluten free diet amongst clinicians is limited.

00:01:04: then we rely heavily on referral to dietic services or dieticians who would predominantly give this advice to the patient's.

00:01:13: Especially when i see my patients ,I say oh Mr Smith you've got these diagnosed with celiac disease You need go on Gluten Free Diet And I'll give a ten-second advice.

00:01:22: Yeah, Google search or go to this website and then that's about it.

00:01:26: but luckily i have wonderful celiac dietician service led by Christian Relyon and its easy for me.

00:01:34: however don't think so.

00:01:35: all of us across Europe have access to specialist celiac disease dietitian For the patients and overall because lot of these patients are managed still by gastroenterologists that we as clinicians know about the dietary aspects of celiac disease, which I feel often get it wrong.

00:01:58: So today to talk about this... We have Christian Costas who is a celiac specialist dietician running the dietitian-led celiac service at Bradford Teaching Hospitals in the UK.

00:02:11: He's multi award winning dieticians and he also co-author of the latest iteration of the British Society Celiac Guidelines that are due to be published soon.

00:02:22: A more important question, what I appreciate is your dedication to education in all matters of celiac disease.

00:02:29: you have produced some amazing online content and we have a huge presence on line with your Instagram page.

00:02:36: if people want to check it out i'm sure Kristen will tell us.

00:02:39: its a celiac underscore dietician.

00:02:42: He has a huge presence with more than twenty thousand followers online.

00:02:46: Welcome to the podcast!

00:02:47: Thank you, Pradeep for having me and thanks to UEG for their fantastic platform.

00:02:53: they've got it's true honor to be here to speak about such a special subject.

00:02:57: Excellent okay.

00:02:58: Christian let's start off.

00:02:59: I mentioned about the dietitian-led celiac clinic that you run.

00:03:05: could you mention what is this?

00:03:07: How did he set up?

00:03:08: maybe?

00:03:09: And if there are any other clinicians out there who want to set this service up along with their dietetics colleagues, how could they go about it?

00:03:17: in brief?

00:03:18: Brilliant, great question.

00:03:19: So the dietician-led celiac service is something that's been kind of growing in the UK I'd say over the last twenty years.

00:03:26: so we're definitely not the first ones to have it but we've given a lot of momentum.

00:03:30: Really what this model flips historic models on its head right?

00:03:34: Rather than having traditional gastroenterologist sees the patient from diagnosis going follow up and then maybe refers to dietitians.

00:03:40: at start when they might get like one or two appointments we assume that everything's fine, it turns out around and after diagnosis then the patient sees a dietician.

00:03:52: The dietitian kind of takes care of the patients' care and then refers back to gastroenterology when needed.

00:03:57: And what we've got in Bradford... We sort of established that with some extended roles where we have some agreed bloods.

00:04:03: there I myself as a dietician on our other dieticians can take.

00:04:08: but they're good thing about is that the patient gets structured support from diagnosis to ongoing follow-up.

00:04:13: That helps us make sure Dave Sander was saying, you know the diet's the cornerstone of treatment.

00:04:18: so we really make sure that patients get their right support from the start.

00:04:22: They get that, but there's medical issues.

00:04:23: There is a quick access and we've got team working with gastroenterologists to explore things further if needed.

00:04:29: so it gets the best of both worlds.

00:04:31: And what we have shown was also cost effective way for doing things.

00:04:34: It can save gastroontologist appointments and necessary investigations Patients having improved confidence too.

00:04:40: We published some data around this.

00:04:41: So I think its all a win-win For everybody really done in their right ways.

00:04:46: So I would say if people want to set it up, you know we always advise a lot of people on some other things that can be done.

00:04:52: But i think there's good conversation about how it could run and make sure its safe effective And this team working between gastroenterologists and dietician is key but were happy to help out.

00:05:02: If anyone has any questions or wants data Yeah,

00:05:07: that's a good way to go Christian.

00:05:09: I think most of the patients wait long time to see gastroenterologists and disease area where we tend to sort of ignore or at least not.

00:05:18: you know lot of us don't have the latest update knowledge on these things And somebody who has a special interest in this would run it much better way than patients getting mixed up with various other disease conditions.

00:05:30: Generally, gastrointestinal diseases have very benign disease whereas patient side they suffer quite a lot and that's where the importance is I think

00:05:40: for sure.

00:05:41: so Christian let us move on.

00:05:43: Let say we've made new diagnosis of celiac disease

00:05:47: And

00:05:48: I sent a referral to you, this is the first time that patients don't have any knowledge on what your free diet is.

00:05:57: What's your approach?

00:06:01: Brilliant, I think it's a great question.

00:06:03: It is really common to say so i'd say start off...I think its important to highlight that yes time will be limited in all these consultations.

00:06:10: there are only so much you can do right with the knowledge and training they have at this point.

00:06:15: So first thing if u don't have access to dietician I think it's really about signposting to the best sources of information there.

00:06:23: and i would say first off for example, rather than saying To The Patient right if you go on google we've got some trusted sources.

00:06:30: That's a really good first step.

00:06:31: Right that's the best one.

00:06:33: because what happens is?

00:06:34: I see A lot with patients in the little Google.

00:06:36: Some will find Good Sources some others And they get Really Confused.

00:06:39: So Say In UK For Example We have Celiac UK.

00:06:41: The Charity Supports People With Celiac Disease But The Celiac Society International Whatever Country You're In try to get them to go the celiac society.

00:06:49: They can also join the Celiac Society potentially, and there's some good resources for food they can find.

00:06:56: There are support groups that sometimes structure it so they connect with other people.

00:07:00: This is a really important thing in celiac disease because people feel very isolated.

00:07:03: So if you connect with another person then they will have advice or help from their onset.

00:07:08: That signposting could make big difference.

00:07:12: But I'd say an important point even when we talk about five minutes A really important thing is, although as you were saying Pradeep.

00:07:20: You've got so many conditions to deal with and celiac disease isn't going be the most severe.

00:07:24: but what I'd say those five minutes can be life changing for that patient.

00:07:27: right because they'll come to clinic with expectation of God diagnosis.

00:07:31: What's my treatment?

00:07:32: Right?

00:07:32: So i think it actually saying to them there this important condition because it's a multi-system autoimmune condition.

00:07:39: As Prof Sander was saying, they can affect different areas of the body and the only treatment is diet.

00:07:43: but their diet has to be done really well right?

00:07:45: And I would say even if you don't have the advice... A real quick thing.

00:07:48: we'll talk about later potentially.. But what i'd say as he get them to touch your eyebrow these are this is what they need to avoid in the gluten free diets an acronym BROWBROW Right.

00:07:58: so you've got barley rye, oats and wheat.

00:08:01: So at least you're telling them the main grains that they need to look out for right?

00:08:05: And then oats we'll talk about later a bit.

00:08:07: but at least he can say right remember that brow barley rye or some weeds if got like five minutes there.

00:08:12: so sign post them.

00:08:13: also tell him it's an important condition even if you don't have access to dietician there that he can send them too.

00:08:21: At least tell the patient this is an important diet, try and seek really good information.

00:08:25: so they get any support out from someone who's got specialist knowledge in their diets.

00:08:30: great but these are some good starting points there.

00:08:33: And at least they're in the same five minutes, it's the concept around the importance of the time for that patient and really is not an easy thing to do because what I'd say this diet is much more complicated than most other treatments with a patient when it entails right?

00:08:46: The restriction, the challenges.

00:08:48: so its good highlight on then those five minutes or atleast you give them a head.

00:08:53: start these,

00:08:55: maybe you can explain briefly about that.

00:09:05: Sure!

00:09:05: Yeah great question.

00:09:07: so what I'd say is with them we tend to do two steps.

00:09:11: the first one is really explaining the diagnosis in a bit more detail.

00:09:15: if thats needed had that from their gastroenterologist doctor, but at times limited to some of them will have some questions.

00:09:21: So I think it's the why behind everything?

00:09:23: Why do you need to follow such a restrictive diet?

00:09:26: because we're asking someone to restrict gluten for life.

00:09:28: so they have to do it for good reason.

00:09:29: That is first connecting point with patient needs.

00:09:31: understand how it affects condition and everyone has different symptoms.

00:09:35: make those connections.

00:09:37: try connect dots first.

00:09:39: second then tell about restriction.

00:09:41: what say?

00:09:42: summarize really quickly It's, you know, glue is a problem when you eat it.

00:09:46: Right?

00:09:47: And that?

00:09:47: and what if you think of where are you going to eat gluten?

00:09:50: so you're gonna eat it with When You buy something or the food label or when you're eating food from outside of the house.

00:09:57: So we kind of go through those three scenarios and talk about labelling, will bring up this brow acronym barley rye oats and wheat... We'll talk about.

00:10:04: oh it's hopefully a. you know we've got bit time.

00:10:06: we can talk about what's in a bit more detail later right but is these things that-that we avoid?

00:10:10: Right!

00:10:10: And then what we'll talk About.

00:10:12: right This Is What You Need To Consider With Food Labels What You Have to Do At Home Making sure people at home are aware because there's this whole thing around cross-contamination, or cross contact of gluten.

00:10:21: It's not just the ingredients how foods are cooked and prepared same with their food labels.

00:10:25: And then when you eat out what sort things do have to do?

00:10:27: What questions You need to check When you go up to a restaurant so as you can see it impacts things you know patients.

00:10:34: Then we'll ask about stuff like traveling, going to weddings.

00:10:37: All these things you might not think of but it impacts patients day-to-day.

00:10:40: so we try to give them the whole.

00:10:41: this is what you need to restrict and This Is What You Need To Include Into Your Diet because We Also Need To Focus On What They Need To Eat.

00:10:47: But I Guess In A Nutshell Hopefully If That Gives a Bit Of Context And Then That Helps Them To Understand Right It's This Gluten Free Diet I Need To Do But Now This Is How iNeedToApplyItInMyLife And that's why I would say, although we talk about gluten-free diet as one.

00:10:59: There is not one gluten free diets because the way we apply it with each patient is different and its a bit more personalized.

00:11:05: Each person scenario situation going to be different at work you know?

00:11:08: At home all of those sort stuff.

00:11:10: Okay thanks Christian for explaining that.

00:11:13: i guess The most common scenario icon across or That I face has a clinician.

00:11:20: He's about dietary ingestion prior to diagnostic testing.

00:11:23: so there are two scenarios here.

00:11:26: The patient goes to primary physician or even a secondary care with some adult symptoms.

00:11:32: We run a screening test such as TTG, Or patients have already had that TTG done in the primary care.

00:11:41: they're positive and waited five months to see a gastroenterologist.

00:11:45: In that time They kind of said oh yeah I know I have celiac disease restrict gluten in the diet, and they've come to see their gastroenterologist.

00:11:53: And the gastroenologists are trying to say let's do a DETO biopsies when we do diagnostic testing what should be the dietary intake or gluten challenge so-to-say?

00:12:04: What is your advice?

00:12:05: how would you give that advice?

00:12:06: Yeah,

00:12:09: another really good one.

00:12:09: A very common one right?

00:12:10: So I think that this is a tricky area too.

00:12:13: there's a lot more layers than we initially think.

00:12:15: so all times will might say like normal diet but then you break it down to what does normal diet mean?

00:12:20: or even we save gluten containing diets.

00:12:22: We've got to define its even further and what would say is a lot from been working on the guidelines To bring look at all of recent data And give more specifics to clinicians.

00:12:31: Really and i'd say when it comes to the Gluten Challenge There are probably four key areas That we want to Look At.

00:12:37: The first one is the type, right?

00:12:39: So a lot of times we say a gluten challenge but if you're telling your patient to eat bread.

00:12:45: We know that bread will have gluten and it's also got some fructans in it.

00:12:49: so there are other things that can trigger digestive symptoms for their patients because they get challenged with gluten with actual vital gluten powder, right?

00:13:05: Or sometimes you can find it at supermarket.

00:13:06: Vital Gluten and sometimes even get patients to like microwave it too because It's a flower.

00:13:11: so we've got to migrate for health safety reasons or heat it up And then actually be added things like water yogurt and that pure gluten.

00:13:19: Now, again that's a bit tricky.

00:13:21: So in the guidelines we'll be sharing a few tips around but I think it is helpful thing because its not to say hopefully reduce chances of patients getting extra symptoms too.

00:13:29: But there are also some other foods like sourdough spelt bread for example right?

00:13:33: That spelt will have wheat and glutinine productions through making it sourdough will have less FODMAPS in it too, right?

00:13:41: So the type of food that we give then is important.

00:13:45: Right so That's a first step I would say.

00:13:47: but Then we have to look at the amount The Amount Of Gluten.

00:13:51: We know In A Lot Of Trials That The Ammount From A lot Of Them Is Kind Or Something Like Three To Six Grams Is Probably What Will Recommend.

00:13:58: And The Guidelines.

00:13:59: What I'd say is to give you an idea, right?

00:14:01: Three grams of gluten.

00:14:03: If use your hand there's a portion that's quite good.

00:14:05: so it's like a fistful of pasta maybe or slice bread more-or less.

00:14:09: To give you the idea

00:14:10: That's per day.

00:14:11: So what we would do if that was three grams?

00:14:15: then yes Per Day We recommend something like three to six but even more because think about the test with celiac disease.

00:14:24: Check there's abnormal response.

00:14:25: The more gluten in diet the better.

00:14:28: And a lot of times what we try to say, if you can go up to something like ten grams then that's probably even better because a lot the data really is that amount per day but also their time right?

00:14:38: The-the amount of time That would do it on.

00:14:41: so I guess the key message Really A Lot Of Times Is The More Gluten For The Longer The Better Right.

00:14:46: But A Lot Patients Might Struggle With Amounts So It Say Probably Six Weeks.

00:14:50: Or You Want To Do Something Like If You Wanna Remember This Six Number Six Six Grams for six weeks probably a good amount to do.

00:14:56: If we can push that further, the amount of gluten great but if not six grams is some data for two week challenge with higher amounts like ten grams potentially?

00:15:05: But I don't think we have reassuring data to say that you can guarantee in two weeks that person... For example, that person who's telling me or potential patients per deep ...that they've gone on a gluten-free diet after their serology was raised until they had biopsies and then actually see histological changes there.

00:15:22: you might not see it with everyone.

00:15:24: So I think six weeks is something quite good, we can do a bit longer fantastic.

00:15:28: but the other thing that So you'll get some patients won't want to do that.

00:15:41: I think managing expectations is a really important part of this, it's saying... Some of these symptoms like abdominal pain, nausea normal but they tend to settle a bit more when your eating gluten for a bit longer.

00:15:51: so maybe its bad at the start But if you keep pushing through then might settle and be able to do or you may have been able to start a graded challenge where we start off with three grams and build up six And than thats better.

00:16:04: The key thing in keeping them doing their challenges are lot.

00:16:06: patience them about this, then what they might do is stop it completely rather than just reducing gluten.

00:16:12: So if we can keep a lower dose for longer that's going to increase the chances of seeing some histological changes or changes with zoology.

00:16:20: so I think those are these sort of areas and sometimes as dieticians you know what we do?

00:16:24: We advise patients on their diet be able to keep doing eating as much gluten possible by making some of these little tweaks.

00:16:31: Excellent!

00:16:31: It's not a simple answer but the way you're trying to say is three-to-six grams, which is probably a slice of toast or two slices of toast.

00:16:43: A

00:16:43: couple I'd say at least yeah...a couple of slices of bread for six weeks

00:16:47: and a handful of pasta ...for six weeks at least.

00:16:50: okay good more the better longer the better in terms of increasing that sensitivity.

00:16:58: anyway.

00:16:59: Okay, Christian.

00:17:00: That's good to know why things are not that straightforward so which is understandable?

00:17:05: So let's say you talked about what advice do you give patients at the beginning and then normally would see them after a year or six months or so.

00:17:14: I'm assuming most patients are compliant with their diet.

00:17:19: Let us say on the follow-up clinic Normally if I see such patient i'll say one sentence yeah how're doing on a gluten-free diet?

00:17:29: and they say, yes talk no problem whatsoever.

00:17:32: Whereas in your setup...in your clinic I'm sure there's more to it than just you know.

00:17:37: patients might..might say but then maybe contamination that this would be.

00:17:41: how do you go about sussing out these other things at constant ongoing gluten exposure?

00:17:48: i think that's more relevant in patients who have ongoing symptoms right.

00:17:52: so how do?

00:17:55: Yeah, sure.

00:17:55: So what we tend to do is... We will ask a few more structured questions and from doing it so long that some common areas start asking about When we're looking at evaluating adherence, it's important to probably break it down into voluntary and involuntary adherents.

00:18:13: So a voluntary gluten exposure you can say is voluntary because the patient will tell you straight off I'm eating gluten they know the source and their telling your right?

00:18:22: It might be happening this or in weekend where i struggle socially when i eat out.

00:18:27: so there are few of these things.

00:18:29: that's easier.

00:18:31: but The thing that happens a lot is this involuntary gluten exposure.

00:18:36: And that's where patients will tell you, right?

00:18:38: I'm following the diet but there's more to it and what i'd say are different definitions.

00:18:42: so if they've never had the right support or education before then might think I am doing perfect because no one has told me I need to avoid cross-contamination and just avoiding things from an ingredient point of view.

00:18:52: Or have thought about stuff like sometimes as few little extra layers when they eat out asking for things shared fryers For example If their getting food be used in fryers that are use to have like other foods with gluten for example.

00:19:07: So this is the UK, for example fish and chips right very common to see.

00:19:10: so these share fires where there's a lot of wheat going into them if their food is prepared they're then come cross-contamination.

00:19:18: But what I'd say is that even from our data, that we published.

00:19:21: What we showed was in patients who were putting their hand up and saying I'm following gluten free diet We identified involuntary sources of gluten exposure In about forty percent Of them right?

00:19:31: And that goes to show there's a big mismatch between what patients think they're doing with the following The gluten-free diets on whats actually going On...and it's for these things little Things like food labels.

00:19:40: They might not be checking everything on A food label..they Might Not Be Checking as we are saying For cross contamination or Cross contact on a Food Label be missing certain ingredients because they're not spotting everything at home.

00:19:50: There might situations where assuming things are fine and then communicate stuff to their family or people at home, maybe getting involuntary exposure to gluten as other people doing double dipping with bread into the spreads.

00:20:05: so there's small things in that I would say.

00:20:07: what we tend do is ask more detailed questions about how patients navigate different scenarios.

00:20:12: it gives us a lot of information on injuries and avoid gluten or cross-contamination.

00:20:20: So, Christian that forty percent is quite a lot I thought more than what i would think patients are not aware they're being exposed to.

00:20:30: clinicians just assume these.

00:20:32: probably the patient will have ongoing symptoms.

00:20:34: so you do explore this.

00:20:37: tease it out of the patience.

00:20:39: give them advice if there've gone on going symptoms.

00:20:42: That brings onto their next question What is the bare minimum, what are the amount of gluten exposure that's required to cause histological changes with that causing symptoms for patients?

00:20:57: How low it is important.

00:20:59: It was

00:21:01: a great question and I think this an eye-opener when we start telling them things like cross contamination.

00:21:09: so how much gluten does it take to cause me damage in my gut?

00:21:12: So what I'd say is one of the best studies we've got to date, right?

00:21:16: Is a study from Carlo Catasse's group whose Carlo Catase has published a lot for great research on celiac disease back to two thousand and seven.

00:21:24: What they did was gave patients with celiac diseases captures different amounts of gluten And were able see at which stage people start more histological changes symptoms and identified that ten-to fifty milligrams of gluten was enough to trigger damage in their gut.

00:21:40: To give you that in real life terms, ten milligrams right?

00:21:44: Let's go back to slice of bread there.

00:21:45: Everyone knows it.

00:21:46: so if you get a slice of Bread You chop that into one hundred pieces.

00:21:50: One of those A hundred pieces from that slice Of bread is about Ten milligrams Right.

00:21:55: So we know That thats gonna be too much.

00:21:58: And Thats why when We talk About celiac disease and the gluten free diet When we look at thresholds labeled gluten-free, they have to have way less than that.

00:22:08: So that cumulatively people can have a few gluten free foods in the day and no it's not going to cause damage right?

00:22:14: so That's why the threshold... And this is different in different countries but In The UK & Europe It's No More Than Twenty Parts Per Million!

00:22:22: That has To Be This Safe

00:22:24: Limit!!

00:22:24: Again If We Go Back To The Slice Of Bread To Say A Lot People Will Say Well With Twenty Part per Million Right?

00:22:28: Or Twenty Milligrams Per Kilogram, twenty parts per million.

00:22:31: What Is

00:22:31: That??

00:22:31: It'S A Proportion

00:22:32: Right?!

00:22:32: So if we Get That Same Slice of Bread where we've said that one out of those a hundred pieces is too much, right?

00:22:38: For it to be safe.

00:22:40: Twenty parts per million would be the same slice divided in a million pieces now and no more than twenty people can have gluten for them to save so its way smaller Right!

00:22:49: And you kind almost see on this scale.

00:22:52: So when I explain these to patients they help understand.

00:22:57: cross-contamination or contact Those are two terms used is a thing and we don't just have to avoid the ingredients, you've got to avoid these scenarios.

00:23:05: And it really helps a lot of patients right with their symptoms too.

00:23:08: that's why a lot them don't fully respond to the gluten-free diet.

00:23:11: there are other causes which we see.

00:23:12: obviously but one of things that trips him up a lot too once they know how to avoid it takes some good steps forward.

00:23:20: yeah I think thats where Christian let say the patient come to see gastrointrosis for followup and they have ongoing symptoms.

00:23:28: And a simple question of are you following the diet or not, is not sufficient?

00:23:34: At a formal review by specialist dietician.

00:23:39: it's so important if we're saying forty percent of those still being exposed involuntarily.

00:23:44: Definitely

00:23:45: That's really good.

00:23:46: to highlight that!

00:23:47: It's very important for gastroenterologists to take home from this conversation.

00:23:53: Yeah, I dad in to their pretty.

00:23:57: the important things is that it's safe.

00:23:58: So what we showed him our data is at that saved and necessary endoscopies too right.

00:24:03: so these patients if you know he can't get into bottom why they're getting symptoms, are going to end up having a repeat endoscopy.

00:24:09: So we were able to identify and show that in the data actually reduced.

00:24:12: unnecessary endoscopies will solve this symptoms quicker.

00:24:16: And then patients who despite still have symptoms We get them agastroscopy and can explore whatever test They need.

00:24:22: so it's really cost effective way of managing things.

00:24:25: you get to root cause of problem much quicker with communication That detail from their diet.

00:24:32: Great!

00:24:32: Well explained question.

00:24:34: Let's move on to the diagnosis of potential celiac disease and I covered this with Professor David Sanders earlier.

00:24:41: So, in the guidelines of Sanders team defined potential celiac diseases as those patients who are positive serology but they haven't developed damage within their small bowel

00:24:56: i.e.,

00:24:57: they don't have villus atrophy or very minimal changes.

00:25:01: And I guess Prof Sanders did highlight that, you know always check why.

00:25:04: That is make sure they've taken better biopsies and all of that.

00:25:08: yeah we'll will check all that.

00:25:09: but he said these patients if there are true potential celiac disease patients These are the ones in waiting room to develop celiac diseases.

00:25:19: So what would be your advice for such patients?

00:25:26: Yeah, and I think i'd take a very similar approach to professor sanders because really we know they're in the waiting room potentially but some of them you know one third of them won't develop celiac disease.

00:25:37: so it's about shared decision making there.

00:25:40: And I think its' realy about making sure that patients got the information they need make their decisions.

00:25:45: what would say is you know, we've got... You could follow gluten-free diet.

00:25:48: Most patients will notice symptom improvement.

00:25:51: but I think what we see from a lot of patients is that they feel it's quite restrictive approach for life.

00:25:56: so some of them would come back and say well actually this too challenging to implement without knowing to have full-blown celiac disease, and I would rather wait.

00:26:06: And i think it's really about having a plan that the patient agrees with... ...and their way back in if they've got symptoms or issues.. ..and potentially do another endoscopy sometime.

00:26:15: but there are options where we can say If the patient prefers not change her diet thats fine.

00:26:21: If they want to go on a gluten-free diet, then we'll support them fully to do that.

00:26:24: But there's also these patients are in the middle which is I was saying you know?

00:26:27: We have to personalize their diets and they might say well i get symptom relief but don't wanna fully do it or avoid cross contamination.

00:26:34: And I would argue That this fine too because They dont' have full blown celiac disease Can see they have villacetrophy.

00:26:41: So what can be done Is help with that wave as far as they want To continue monitoring them See how things evolve.

00:26:47: so thats why its really about shared decision-making and trying to personalize it for the patients.

00:26:53: And then again, being in line with recommendations from gastroenterologists.

00:26:56: so we're all on the same page.

00:26:57: I think that's always completely key.

00:26:59: Yeah

00:27:00: as you said Dave said It is a spectrum.

00:27:04: Patients can be at different stages.

00:27:06: The aggressiveness of your approach would really depend upon what process along each patient are individually.

00:27:17: Definitely

00:27:19: Chrissie, you mentioned about the barley rye oat wheat.

00:27:23: Can I comment on oats and gluten so to say?

00:27:26: A little bit more because that was...I thought it was a bit controversial or maybe that's my understanding?

00:27:31: Yeah sure!

00:27:31: And this isn't just your understanding It is highly controversial right?

00:27:38: So basically oats has been controversial for quite some time in celiac disease

00:27:43: Right?!

00:27:44: What we've known for sometime.

00:27:46: Some people with celiac disease will react to oats too, right?

00:27:50: And the reason for that is because oats have got a protein called Avinin which is quite similar to gluten.

00:27:58: So some patients get what we call cross-reactivity where although oats themselves don't have gluten... right?

00:28:04: There is a protein in them that's similar and some people can be sensitive to them.

00:28:08: So, that's one problem.

00:28:09: but actually the more common which we've seen historically is that you think of how oats are milled or harvested.

00:28:16: it tends with wheat so factories will produce and package them.

00:28:20: they're packed Rye, barley too.

00:28:23: So there's a lot of what we call cross-contamination.

00:28:26: so the biggest challenge in celiac disease really is to make sure that first people with celiac diseases they eat any oats that are always labeled gluten free oats because if their not then likely going have symptoms and problems And a lot early data about oats had oats that were contaminated right?

00:28:42: That muddies the waters when you're trying to see who's sensitive or who isn't.

00:28:51: make sure that the oats they're actually labeled gluten-free, right?

00:28:55: Now however what I'd say to this is because of these issues with sensitivity and with a gluten free diet as said in Europe.

00:29:02: The whole twenty parts per million thing isn't Europe or UK.

00:29:05: different countries have different approaches.

00:29:06: so for example if you look at Australia does not allow oats at all in their gluten-Free Diet Because Of These Issues With Oats.

00:29:14: Previously So Different Countries Have Different Ways Of Applying The Gluten Free Diet but interestingly enough been really keen to actually explore this issue without further and say, do we need to fully avoid them or not?

00:29:28: And they published one of the best well-controlled studies.

00:29:32: We've got only last year Jason Tidin's group led by Melinda Hardy with a publication in twenty twenty five from the team in Australia.

00:29:41: What they did is challenged people with gluten free oats and pure avanen right.

00:29:46: it was interesting about thirty patients And previously, we sort of understood that maybe it was about ten percent of people with scenic diseases are sensitive to gluten-free oats.

00:29:54: But their studies showed this is likely closer to something like three percent right?

00:29:58: Again, there's a small study.

00:29:59: It's hard to show they do long term data but its reassuring and I think the lot things i would say in my practice will recommend.

00:30:08: patients Are okay to have oats as long as you're gluten free from the start and monitor them.

00:30:12: if these issues We can always remove them.

00:30:14: take him out.

00:30:17: It's already restricted enough when you take wheat.

00:30:19: out of the diet, that's an important grain and most patients don't replace it.

00:30:23: So actually I would need a very good reason to remove oats out from someone's diet for like because they're really good source of soluble fiber you know?

00:30:31: They've got loads of really good nutrients in there for our patient so we get enough fiber on their diets too!

00:30:39: That balance between restriction and inclusion.

00:30:40: but as long as we monitor... There is no one way of doing things.

00:30:43: But i think we have to make sure always gluten free And if we monitor patients then give them the right advice.

00:30:48: We see there's issues with them.

00:30:50: Some we might need to take it out of their diet, but we should always explore those symptoms accordingly.

00:30:55: Lovely.

00:30:56: Krishnan.

00:30:56: I think.

00:30:56: earlier they alluded to the patients in the follow-up clinic that persistent symptoms and against the first thing to explore are probably most common reason why we felt these ongoing involuntary or voluntary gluten exposure.

00:31:12: let us call it.

00:31:13: what is your approach for such a patient?

00:31:14: so if you come to see

00:31:17: Great question.

00:31:18: And I think it's my approach has evolved a lot over time, right?

00:31:21: So what i'd always say is the initial thing in someone who's got celiac disease.

00:31:25: and actually we look at data and Sheffield published some fantastic data here because of how the UK set up for non-responsive celiac disease, suspected refractory celiac diseases.

00:31:37: People send them there.

00:31:38: so they actually looked at the causes of non responsive celiacs right?

00:31:42: So they published this great paper in twenty twenty two and what we found was that most common cause is what were talking about ongoing gluten ingestion.

00:31:49: About twenty five percent of patients main cause because their still eating gluten.

00:31:53: Right!

00:31:54: That's first thing.

00:31:54: with celiac disease We've always got to get suspect out.

00:31:56: We have rule it out first Are They Actually Still Eating Gluten?

00:32:00: Thats Always The First Step.

00:32:01: But interestingly enough, what the second most common cause was IBS.

00:32:06: or functional type symptoms, or DGBIs as we know call them.

00:32:09: So really and that was about twenty two percent of patients.

00:32:12: so really at these patients are coming with persisting symptoms About half.

00:32:16: you can sort of resolve them with making sure they're following the diet And supporting them with IBS type advice.

00:32:22: a lot then will have this type symptoms But in some of them We'll Have A mix Of other conditions Some associated with celiac disease As we Know microscopic colitis Inflammatory bowel disease A few full array of things and some Will come back With refractory Celiac Disease which is extremely rare, right?

00:32:37: So that's going to be the most unlikely scenario.

00:32:46: But I spot so many of these cases.

00:32:48: And i think a lot this data, you know that's from previously but we're getting more and more on the state of dgbi is raising in general right?

00:32:55: I'm sure you see loads of them in clinic pretty compared to previously too!

00:32:59: And...and..I Think That really A LOT OF THEM WE GET.

00:33:02: IT'S A BIT MASKED BECAUSE IT'S BIT OF EVERYTHING SOME.

00:33:04: THEY MIGHT NOT BE FOLLOWING THE DIET AS MUCH BUT THEN THERE IS A BITE OF LIKE THIS DGPI stuff going on too.

00:33:09: So a lot of the advice really is about the gluten-free diet but also making sure they're eating enough fiber, make each other managing stress getting enough exercise optimizing sleep.

00:33:17: it's like the full package really and that's what I see really resolve symptoms with people fully It's when those causes And then we might need to personalize or tailor their diets because They have another medical condition.

00:33:30: if you've got IBD Or something like that We might need adapt the diet more To help them in area.

00:33:36: That's great question.

00:33:37: I think we covered most of what i feel that is lacking for a gastroenterologist to understand about the dietary aspects, Is there any other things that have been missed out or anything you think are relevant in either patients or gastrointrologists?

00:33:55: probably that just keeping the emphasis, I know talked about it a bit before but i'd say its like really the diet.

00:34:02: as we've said diagnosis is more complex than what you often think.

00:34:06: so getting to diagnosis right is such an important thing.

00:34:09: As Professor Sanders was saying too doing all of these tests you can elevate this certainty because were putting someone on a diet for life and restrictive in challenging diet impacts The patients, their relatives or friends family all of that.

00:34:21: So I think that's a really important thing.

00:34:23: and then it's not just about what we take out the diet It is what you put in And thats where we've got to focus on gluten free grains getting enough fiber diversity getting off vitamins and minerals also.

00:34:34: that reduces risk for these patients developing more disorders of gut brain interaction.

00:34:40: they have better diets.

00:34:41: We already advised them about diet and lifestyle.

00:34:43: so its almost like if we front load right advice at this start for the future self-management.

00:34:50: So I think it's really investing in these sorts of things, really helps and then i'd say link to that!

00:34:55: And...I just feel like you know I'm such a big advocate and multidisciplinary working, right?

00:35:00: And I know with yourself.

00:35:01: I'll always pop your questions, Pradeep if i've got any question.

00:35:04: you're really good at checking things and getting back on it.

00:35:07: think that's such an important thing to work closely between dieticians gastroenterologists sometimes even psychologists which because patients can feel really impacted psychologically for many of these things the symptoms not coping with a diet so Really where we can't work in together is such an

00:35:23: Excellent question.

00:35:23: I think the thing about what you introduce because you're taking away quite a lot from these patients, some patients already malabsorbing and then put them on further restriction that they might go into more malabsruption rather than curing

00:35:39: for sure.

00:35:40: And it's also further, you know what we call food related quality of life right?

00:35:43: So Food impacts people so much and I think We give them these options.

00:35:48: It helps them getting the nutrients The right nutrients into their diet.

00:35:52: but Also many patients feel very frustrated with a diet because they Feel its so limited But no one has told them What can eat.

00:35:58: instead They've just told them Don't Eat this!

00:36:00: As clinicians if were aware Of that then That is good.

00:36:04: part of our work Is to get balance With patient Then come back To clinic This interesting thing.

00:36:09: And many of the patients, even ones with disorders that have got brain interaction a lot are like say we've got IBS and C-lectas.

00:36:13: They'll come back to my symptoms or bear but i'm eating more!

00:36:17: I mean during my diet.

00:36:18: how is it possible?

00:36:19: It's perfectly possible.

00:36:20: We just need the right guidance and support for them.

00:36:23: That's fine Christian.

00:36:24: The one thing I wanted to highlight Is you know You put out so much out there on your Instagram... ...the education material and really strongly suggest people To follow your posts some amazing posters that you publish.

00:36:39: Can I just remind us what your Instagram handle is?

00:36:42: Sure, thank you.

00:36:42: yes so it's at on instagram at celiac underscore with the UK spelling C O E. Celiac underscore dietitian and dieticium with a D rather than a C dietician.

00:36:54: And then yeah share loads of useful things for i'm always really keen to support health professionals patients.

00:36:59: So anyone feel free to get in touch if I can help With anything more than happy To do In this space.

00:37:05: Okay, and is there any other resources that clinicians or patients can get to?

00:37:09: You mentioned about Celiac UK but anything else in terms of dietary advice.

00:37:13: Simple things they can access

00:37:16: Yeah.

00:37:18: So the ones that I most know are UK ones, right?

00:37:21: In the

00:37:21: U.K.,

00:37:21: there's a website we can link which is actually patient webinars with some colleagues who were dietitians down in summer set to create these resources for patients and they've got really good.

00:37:29: breakdown of celiac disease where gastroenterologists and dietician as it recorded webinar.

00:37:34: so i think thats'a really good one!

00:37:36: That's an helpful one.

00:37:37: We have CeliacUK.

00:37:38: this also...I worked within the street to create resource free-for clinicians like a forty page booklet.

00:37:45: you can get it as a PDF or clinicians can get sent to the department, give us a printout so we could link something like that in show notes.

00:37:53: kind of like that scenario was saying, Pradeep we've got five minutes in clinic where you can just say right there.

00:37:57: You go...you have a booklet.

00:37:59: so you get the Celiac UK then also with the British Dietetic Association and some colleagues who created food fact sheets for Celiak disease which again I can forward them to be downloaded.

00:38:10: it's one pager is key.

00:38:12: things need know but i think if all those link they are helpful resources or not based on

00:38:18: U.K.,

00:38:19: always reaching out see what around positive thing and the CDAC associations.

00:38:25: Christian, that was lovely!

00:38:26: And this is really enlightening certainly for me.

00:38:28: thanks coming on today.

00:38:30: Thanks from the

00:38:33: UAG.