UEG Journal podcast episode 14: Self-Reported Non-Coeliac Gluten Sensitivity and Disorders of Gut-Brain Interaction

00:00:05: Hello and welcome to the UAG Journal podcast.

00:00:08: My name is Manuela, I am a trainee editor at UAGJournal And i'm based in Porto Portugal.

00:00:33: But what exactly sits behind that experience?

00:00:36: Is it fully gluten, is part of a disorder of gut-fraining interaction?

00:00:40: and what happens when avoiding food starts to become a problem in itself.

00:00:45: A new study published in the UG Journal explores these questions entitled Privilege of Self-Reported Non-Celic Gluten Sensitivity and its Association with Disorder Of Gut Brand Interaction And Disordered Eating

00:01:02: And we are delighted to be joined by the senior author, Professor Imren Aziz from The University of Sheffield.

00:01:09: Imren welcome!

00:01:11: Thank you Manuela.

00:01:12: thank you Morsin for this very kind introduction and for me to be a part of the UEG podcast today.

00:01:19: So before we get into numbers I want to start somewhere slightly different.

00:01:24: What led you and your team do these work Imren?

00:01:27: Okay so i'd like take back maybe decade or two where there was this almost sudden explosion in individuals who were reporting sensitivity to gluten-based products.

00:01:40: Now at the time, many of them were directed to the celiac specialist clinic and of course following investigations most these people did not have celiac disease.

00:01:52: At that time The Celiac fraternity coined the term non-celiac gluten sensitivity which whilst having stuck over this time period has been extremely debated as a nomenclature.

00:02:05: On the other hand, we have individuals who are experts in the field of IBS or disorders of gut-bren interaction and here we see many people who report sensitivity to food items.

00:02:17: around seventy percent of people with IBS report problems with food items such as for example lactose wheat onions garlic etc.

00:02:26: so these patients that were presenting fit in to the spectrum of IBS and DGBIs.

00:02:32: So we had two kind of polarizing views as to what exactly is going on here, And over the last decade We've tried to reach some middle ground and understand better As To What The underlying pathophysiology Is Here ,and i think In general what we have established is That the vast majority Of People who self-report sensitivity to gluten based products.

00:02:56: One, do not have C disease and two have symptoms compatible with DGBIs.

00:03:00: And three the symptoms tend to be almost likely attributable to fructans which is present in wheat as a fermentable carbohydrate or possibly a nocebo effect.

00:03:12: by Nocebo we mean that if you think something's going to harm it will.

00:03:16: however That does not discount very small proportion of people that may have a gluten-specific response.

00:03:24: So, it gives you a bit of feel as to the platform we have for non-selected gluten sensitivity.

00:03:31: but there are some other questions... For example what is the prevalence on this condition?

00:03:36: There's data out there which has been limited by heterogeneity because different sample sizes and study design etc.

00:03:45: component is that whilst a lot of attention has been paid towards these individuals having symptoms, does sound like IBS?

00:03:51: What about other DGBIs for example functional dyspepsia etc.

00:03:55: Do they have symptoms compatible with those conditions?

00:03:58: and thirdly These individuals may not just be avoiding gluten.

00:04:02: They maybe avoid all the food products too Like we see in IBS.

00:04:06: So though The question Is how many food items are they avoiding And Are there A risk Of potential disordered eating patterns.

00:04:16: Thanks, Imran for this very informative information.

00:04:20: I hope it would be interesting to our listeners.

00:04:23: so on that very interesting intersection between IVS versus celic sensitivity or celic gluten and avoidance behavior what are your thoughts about in general about why didn't a restrictive food intake?

00:04:39: Thanks, Mohsin.

00:04:39: So what you've just mentioned is what we referred to as arphid.

00:04:44: now arphide Is a relatively new diagnosis that was introduced in the DSM around ten years ago and it stands for avoidant and restrictive food intake disorders.

00:04:55: It is different from the classical eating disorders That were trained To look For example anorexia nervosa or bulimia.

00:05:03: These individuals are not driven by their body weight.

00:05:07: Rather, arphid is a condition where individuals restrict their food and it can be to the point when he becomes irrational.

00:05:14: And it leads to medical and psychosocial complications.

00:05:18: now what I should mention Is?

00:05:20: What we haven't really explored on.

00:05:23: what would the purpose of our study was if you take account of birds eye view Of looking at the general population are looking out this intersection between DGB eyes non-celeglute insensitivity unarphid To see what the relationship All association was there.

00:05:39: And that uncertainty is really the core rationale of paper, right?

00:05:42: Whether non-celiac glock trans sensitivity specific hypersensitivity or part of a more heterogeneous phenotype associated with DGBI and eating disorder?

00:05:54: Right

00:05:55: Yes.

00:05:56: So Imran talking about this study I think thats very interesting background.

00:06:01: so can you take us bit about results and sort what did you find important from the

00:06:08: data.

00:06:08: Okay so what we did is, we conducted a population based internet survey across the United States and the UK in twenty-twenty three And In total We had around four thousand adults two thousands From each of these countries.

00:06:25: These were selected Based on predefined age and sex quarters.

00:06:30: Now importantly participants Were invited to take part in A general health survey and by that what I mean is we did not advertise it as a gluten sensitivity or gastrointestinal study to try and mitigate any selection bias.

00:06:47: We then use validated instruments throughout the questionnaire, for example we assess disorders of gut-brain interaction or DGPIs using the full Rome IV diagnostic questionnaire.

00:07:04: having instruments that assess specifically for psychological distress,

00:07:07: i.e.,

00:07:07: anxiety and depression... ...and also somatic symptoms and quality of

00:07:11: life.".

00:07:13: And just to make an important distinction for our listeners this paper examines self-reported NCGS right?

00:07:20: Absolutely!

00:07:21: The word self reported is crucial.

00:07:24: we define NCGS as somebody reporting intolerance to gluten without a self reporter diagnosed with CLABSIS.

00:07:31: So we're not claiming these individuals had gluten sensitivity confirmed by blind or gluten challenge, but rather what you see commonly in clinical practice where people self-reported gluten sensitivity.

00:07:42: Yes and now let's get to the headline number.

00:07:46: how common was it Imran?

00:07:48: We found that fourteen point two percent of adults self reported non-silat gluten sensitivity And what we noticed is that the results were similar across the two countries around thirteen point five in the united states and fourteen point eight percent in the uk.

00:08:06: i would say that is quite a big number.

00:08:08: so there's almost like one in seven people in these countries.

00:08:12: So what do you thought about this?

00:08:14: Yes, it is a substantial proportion of the population but I think another result probably more interesting and that is almost one in ten of those who self-reported non-silia gluten sensitivity were following a gluten free diet which is somewhat Unusual.

00:08:31: Yes, and that immediately raises an interesting question if someone regards themselves as gluten sensitivity why are almost lying out of them still eating gluten?

00:08:43: Exactly!

00:08:43: And that's one of the several clues That this story might be a bit more complicated than just gluten alone.

00:08:50: So individuals self-reporting non-celiac gluten sensitivity also tend to report reactions to multiple other foods.

00:08:58: In fact what we found in our study was those individuals are made and self-reported around three non-gluten food sensitivities compared with zero in people without non-silat gluten sensitivity.

00:09:11: Thank you, so if we're talking about sensitivity to other food items is there any particular culprits here that would like go through?

00:09:20: Yeah it's a wide range.

00:09:22: for example what we found many people were reported sensitivities.

00:09:28: food items, for example, fifty-eight percent report sensitivity to dairy products.

00:09:33: Forty six percent is sugary foods and a substantial proportion also reported problems with onions eggs and nuts.

00:09:41: Now some of these associations particularly linking wheat unions etc.

00:09:46: may be linked to fermentable carbohydrates so called fund maps.

00:09:50: And because the component on fun maps is fructans which are found in this dietary components, but that doesn't explain everything because we also found people were reporting sensitivity to non-fodmap foods for example eggs and fish.

00:10:03: So rather than seeing a clean signal pointing towards one particular dietary component We're seeing much broader pattern of food related symptom attribution.

00:10:13: Yes!

00:10:14: And it fits with your hypothesis that increased visual sensitivity and dietary hypervigilance may be part of the picture right?

00:10:23: Actually yes, but I do think we just need to be slightly careful here.

00:10:27: Firstly it's important to recognise that these symptoms are genuine in this patients.

00:10:34: We're not debating what is the culprit?

00:10:38: Is it gluten or something else found alongside wheat?

00:10:42: and as i mentioned most common evidence seems point towards fructans or nocebo effect Or even broader than that within the spectrum of DGPIs.

00:10:52: And let's move to these orders of gut-raining direction.

00:10:55: What did you find here, Imran?

00:10:59: Again and properly.

00:11:00: not surprisingly there was a very strong overlap.

00:11:03: so what we notice is around sixty percent of individuals with self reported non-celiac gluten sensitivity fulfilled the Role Four criteria for any DGPI.

00:11:15: compared Importantly, and I think this is where it's new.

00:11:23: Is that data?

00:11:25: This was not confined to IBS.

00:11:27: rather we saw associations across different GI regions including the esophagus, the gastrodudinum The most commonly condition that we see there is functional dyspepsia Other bowel and inner rectal disorders.

00:11:40: And even after we adjusted for example demographics underline and mood disorders having self-reported NCGS were still associated with around eighty percent higher odds of having a DGPI.

00:11:52: And one interesting point which I was looking at is association with mental health disorders and specifically mood disorders, so why this is important?

00:12:03: In what context does it need to be taken into consideration?

00:12:06: yeah i think because one potential criticism might be that this all simply driven by psychological distress anxiety depression etc.

00:12:17: But what we found is that the association between DTPIs and non-silaglute sensitivity remained after adjusting for these factors.

00:12:25: And, that suggests at the overlap it's more complex and fits within a broader gut brain interaction model than simply stating this all psychologically

00:12:34: driven.".

00:12:35: Yes so off of the five hundred sixty nine people reporting NCGS only about one third as NCGIS without either other... diseases of the brain-brain axis or ARFID symptoms.

00:12:50: Yes, so what you've just mentioned Manuela is around a third people with non-cidic gluten sensitivity seem to have non-cylinder gluten sensitivity alone whereas remaining two thirds seemed to have a DGBI and all ARFIDS symptoms.

00:13:07: And in fact if we pull the whole group together Around one in four had the triad of NCGS, DGPI's and ARFID.

00:13:16: And what I should just allude to here which did not mention earlier.

00:13:21: when we talk about ARFid has three different elements or drivers.

00:13:25: one is a fear of consequences the other is picky eating and another is poor appetite.

00:13:31: so you can envisage that individuals who have sensitivity to food based products under having GI symptoms whilst they may initially restrict one food Over time, it can start becoming maladaptive and they may end up kind of dietary stacking their restriction to a point where he becomes maladaptives.

00:13:49: And that is what we mean by healthy.

00:13:52: That's great!

00:13:53: So if you go into group level differentiation any particular characteristics different between these groups or other elements would be good for our practicing gastroenterologists?

00:14:06: Yes I believe that recognizing people with non-cellular gluten sensitivity may have different kind of phenotypes.

00:14:15: So maybe NCGS alone, but others may have DGPI and often is important because those that had the triad has the greatest phenotype or so I've got a great severity on the greatest health burden in healthcare utilization.

00:14:29: So for example they had greater psychological distress, somatic symptom reporting reduced with physical mental quality life And as i mentioned Greater Healthcare Utilization.

00:14:39: And in that particular group with a triad, anxiety and depression were present over sixty percent.

00:14:45: In contrast those with isolated NCGS seem to have relatively mild affinity time with lower psychological distress and fairly average health care

00:14:54: utilization.".

00:14:55: This suggests that simply asking does this person have gluten sensitivity may be much less useful than asking what else is happening alongside it right?

00:15:06: Absolutely I think key message from this study and also the importance of viewing your patient holistically rather than just going down one straight track.

00:15:18: So we are coming to an end.

00:15:19: so taking all these fascinating messages in study into account, what would be you take home a message for practicing gastroenterologists?

00:15:29: The first thing I say is don't panic!

00:15:31: And don't immediately refer them to the celiac specialist but rather broaden it out.

00:15:36: You, of course you need to exclude celiac disease and relative organic pathology based on the history and examination and presence in any alarm features.

00:15:43: But once your done that rather than simply focusing exclusively where the gluten should be removed ask yourselves whether patient fulfills criteria for a DGPI?

00:15:54: Whether they are restricting multiple food items or if there is fear of symptoms driving their eating behaviour And four high risk patients this crucial point.

00:16:05: Do not try to manage these patients as a gastroenterologist alone.

00:16:09: You need a team or multi-disciplinary team comprising dietetic support and also psychologists, trying help dampen down the brain axis but also slowly reintroduce unnecessarily excluded foods.

00:16:24: you may consider appropriate psychological therapies for example CBT and even use of neuromodulators.

00:16:30: But I think that take on point is we have to move away from the vast majority of these patients being purely driven by gluten avoidance, but rather that they have a broader bio-psychosocial model in play.

00:16:42: And that's the approach we should be considering.

00:16:46: Thank you Imran.

00:16:47: So one final question What would your most like to see happen next?

00:16:53: I think We need to disentangle this heterogeneity Of the pool of patients That currently with non-seleg gluten sensitivity As I mentioned, the vast majority.

00:17:04: It will be for example, fructans or nocebolthus driving their symptoms and to manage them along the lines of DGBIs etc.

00:17:13: However there is also going to be a very small proportionate patients where it's specifically gluten-driven And There are some data that suggest how do we differentiate between these two groups?

00:17:27: And I think that is where we need to move forward and then enable us to provide better care for

00:17:36: our patients.

00:17:36: Excellent, Imbrad for this fascinating discussion.

00:17:38: so indeed the true question is gluten causing the symptoms or rather why does this person having these symptoms?

00:17:45: What other cause can look into it?

00:17:47: Thank you very much for being here and for expanding your work so well!

00:17:54: Thank you also, Mohsen for being always my co-host and hope to see all in our next UED podcast where we can keep with the most exciting literature that is coming up in gastroenterology.