
IBS and Parkinson’s Disease Connection
If you’ve ever sat across from a doctor after a “normal” colonoscopy, feeling both relieved and completely dismissed, I want you to know something: you are not imagining your symptoms. I hear this so often from my clients, and honestly, I lived it myself for years before I understood what was actually happening in my gut.
I recently sat down with Dr. Nicholas Talley, a neurogastroenterologist at the University of Newcastle and one of the most cited researchers in the world on disorders of the gut-brain interaction. We talked about what IBS really is, a surprising link between IBS and Parkinson’s disease, and a brand-new 2026 clinical consensus on when restrictive eating becomes dangerous. I want to walk you through what I learned, because it changes how I think about care for my own clients.
IBS Is a Real Disease, Even When Your Tests Are Normal
One of the most validating things Dr. Talley told me is this: IBS is a real, diagnosable disease, even though standard tests like colonoscopies and blood work typically come back normal.[1] That’s because IBS isn’t caused by visible damage to your gut. Instead, it involves how your gut functions:
- Visceral hypersensitivity — your gut nerves are more reactive to normal digestion, so things that shouldn’t hurt, do
- Motility changes — your gut muscles move too fast, too slow, or unpredictably, causing diarrhea, constipation, or both
- Increased intestinal permeability — sometimes called a “leaky gut,” where the gut lining doesn’t filter things as well as it should
- Low-grade inflammation and immune activation
- Microbiome disturbances — changes in the bacteria that live in your gut
None of these show up on a standard scope. That’s exactly why so many patients are told “everything looks fine” and sent home with no plan.
IBS affects an estimated 4–10% of people worldwide, making it one of the most common gastrointestinal conditions on the planet, and one of the costliest in terms of healthcare spending, missed work, and strained relationships.[2]
How Doctors Actually Diagnose IBS
Dr. Talley explained that IBS is diagnosed using the Rome criteria, a symptom-based checklist developed by international GI experts. The most recent update, Rome V, was published in Gastroenterology in May 2026 and made an important change: it now recognizes abdominal discomfort, not just pain, as a qualifying symptom, and it lowered how often you need to feel it (from once a week down to just three days a month).[3] This change was made specifically because the older criteria were excluding real patients whose symptoms didn’t fit a narrow box.
What this means for you: if you meet the Rome V criteria and your screening tests are normal, that combination is a valid IBS diagnosis. You shouldn’t need to keep chasing more tests to be believed.

Myth: “My tests were normal, so it’s not IBS.”
Fact: Normal results are expected with IBS. It rules out other conditions like celiac disease or inflammatory bowel disease — it doesn’t rule out IBS.
There is often fear around antibiotics in gut health discussions, but in cases like SIBO, they can be an essential and effective part of treatment when used appropriately.
The Gut Microbiome and IBS: What We Actually Know
I asked Dr. Talley directly about the microbiome, since so many of my clients come to me after ordering an at-home stool test. His answer surprised me in its honesty: the microbiome in IBS is real, but the science is still evolving, and most commercial microbiome tests aren’t yet reliable enough to guide treatment.
Here’s what we do know:
- The gut microbiome is measurably different in people with IBS compared to people without it
- Some people with IBS have small intestinal bacterial overgrowth (SIBO), others have disturbances in the colon, and some have both
- Fecal microbiota transplant (stool transplant) has been tested in randomized trials, but results are mixed and inconclusive overall
- Commercial gut microbiome tests currently give inconsistent results between providers and don’t yet have the evidence base to reliably guide diet or treatment decisions
Practical takeaway: if you’re considering an at-home microbiome test, know that even leading researchers don’t yet recommend them for guiding your care. Save your money for an evaluation with a GI specialist instead, someone who can actually interpret your symptom pattern.
A Surprising Link: IBS, Constipation, and Parkinson’s Disease
This part of our conversation genuinely stopped me in my tracks, and I want to be careful in how I share it, because having IBS does not mean you’re going to develop Parkinson’s disease. Dr. Talley was clear on that point. But the research is fascinating, and I think it’s important for both patients and clinicians to understand.
The Gut-Brain Theory of Parkinson’s
Up to 80% of people with Parkinson’s disease have constipation, and it often begins years, sometimes decades, before any motor symptoms appear.[4] Researchers now believe that in a meaningful subset of cases, Parkinson’s disease may actually begin in the gut, not the brain.
The leading theory involves a protein called alpha-synuclein. In Parkinson’s, this protein misfolds and clumps together. Emerging research suggests these misfolded proteins may originate in gut nerve cells and travel up the vagus nerve (the main nerve connecting your gut and brain) into the brain itself, where they contribute to the disease process.[5] Interestingly, people who have had their vagus nerve surgically cut appear to have a lower risk of developing Parkinson’s, which supports this gut-to-brain pathway.[5]
Dr. Talley’s own research group has found that the gut’s immune response, not just the bacteria themselves, may be a key driver connecting IBS, constipation, and Parkinson’s risk.
Should You Be Worried?
No. Dr. Talley was emphatic about this: Parkinson’s remains a relatively uncommon outcome, even among people with chronic constipation or IBS. His advice for anyone with IBS or constipation is the same advice I give my own clients:
- Prioritize a generally healthy, varied diet
- Stay physically active
- Address constipation early rather than letting it linger for years
- Work with a provider who can distinguish between diet-related constipation, pelvic floor dysfunction, and medication-related causes

When Diet Changes Go Too Far: A New 2026 Clinical Consensus
This next part is close to my heart as a dietitian, and I think it’s some of the most important information in this entire post.
Many of you reading this have already cut out gluten, dairy, or entire food groups before ever seeing a dietitian. Dr. Talley and I talked about a well-known phenomenon that gastroenterologists see: patients whose gut symptoms become so severe after eating that they start eating less and less, sometimes to the point of significant weight loss and nutrient deficiencies.
Until recently, these patients were often mislabeled as having a primary eating disorder. But a new 2026 multi-society clinical consensus, developed using a formal expert Delphi process, gave this pattern an official name: DGBI-induced altered food intake behavior (DGBI-AFIB).[6] It’s now recognized as distinct from an eating disorder like ARFID (avoidant/restrictive food intake disorder) — the eating changes are secondary to real, physical gut dysfunction, not a primary psychological condition.
Why This Distinction Matters
Getting this differentiation right changes treatment completely:
- DGBI-AFIB treatment focuses first on calming the underlying gut dysfunction, alongside careful, dietitian-guided nutrition rehabilitation
- A primary eating disorder requires eating-disorder-specific psychological and nutritional care
- Some patients need both, especially if they have a history of disordered eating and are now also managing a diagnosed gut condition
The consensus also states clearly: feeding tubes should only be considered in cases of life-threatening malnutrition, after all oral approaches have been tried. In most cases, tube feeding doesn’t actually improve outcomes for this group, because the underlying gut dysfunction is still there.[6]
The Biggest Red Flag Doctors Are Trained to Look For
Dr. Talley shared a simple but powerful clinical clue: what happened first?
- If gut symptoms came first, and restriction followed as a way to cope with pain or discomfort, that points toward DGBI-AFIB
- If restriction came first, and gut symptoms followed, that’s a stronger signal of a primary eating disorder
Myth: “A low FODMAP diet is safe to try on your own before seeing anyone.”
Fact: The 2026 consensus specifically states that a strict elimination diet like low FODMAP should not be started in someone who is already significantly restricting food, because it risks pushing them further into disordered eating.[6] This is exactly why I always recommend working with a registered dietitian before starting any elimination phase.
The Low FODMAP Diet: Still the Most Evidence-Based Option
Even with these important cautions, Dr. Talley confirmed that for patients who are not already severely restricting, the low FODMAP diet remains the most well-studied dietary intervention for IBS. Across multiple randomized controlled trials, it improves symptoms in roughly 50–70% of patients who complete the full protocol.[7]
A few things Dr. Talley wanted every patient and provider to understand:
- The low FODMAP diet has three phases: elimination, reintroduction, and personalization — it is never meant to be a permanent, restrictive diet
- The reintroduction phase is what allows you to identify your actual trigger foods, so you can eat as widely as possible long-term
- Working with an expert (like a GI-trained dietitian) significantly improves outcomes, since doing this diet alone is genuinely difficult
- Other options worth discussing with your dietitian include a Mediterranean-style approach and a simplified food antigen elimination (like removing wheat and dairy specifically)
I’ve written more about how to actually do the low FODMAP diet step-by-step here: What Is the Low FODMAP Diet & Identifying Food Triggers.

For a deeper dive into diet options for IBS, check out our episode What Is the Best Diet for IBS?
What I Want You to Take Away From This
If there’s one thing I hope you carry away from Dr. Talley’s insights, it’s this: your symptoms are real, even when your tests are normal, and there is a science-backed path forward.
Here’s how to put this into practice:
- Ask your provider about the Rome V criteria if you’ve been told your tests are normal but you’re still symptomatic
- Be cautious with commercial microbiome tests — the science isn’t there yet to guide treatment decisions from them
- Don’t panic about Parkinson’s disease — the connection is real scientifically, but the individual risk from IBS alone remains low
- Notice what came first — your gut symptoms or your food restriction — and share that timeline with your care team
- Work with a GI-trained dietitian before starting any elimination diet, especially if you’re already eating a limited range of foods
- Build a care team if your symptoms are complex: a GI doctor, a dietitian, and where needed, a GI psychologist or pelvic floor therapist
You deserve a full, well-fed, connected life, not one shaped by fear of your own gut.
Ready to finally understand your own IBS triggers and get a real plan in place? Join my free training, 3 Steps to IBS Relief, where I walk you through the exact framework I use with my clients to identify triggers, calm symptoms, and rebuild a normal relationship with food.
References
- Corsetti M, Shin A, Lacy BE, et al. Disorders of Gut–Brain Interaction and the Rome V Process. Gastroenterology. 2026;170:1261-1282.
- Corsetti M, Shin A, Lacy BE, et al. Disorders of Gut–Brain Interaction and the Rome V Process. Gastroenterology. 2026;170:1261-1282.
- Rome Foundation. Rome V Diagnostic Criteria for Disorders of Gut-Brain Interaction. Published May 2026.
- Talley NJ, et al. [Interview data, IBS Nutrition Podcast, 2026]; see also Braak H, et al. Staging of brain pathology related to sporadic Parkinson’s disease. Neurobiol Aging. 2003;24(2):197-211.
- Gut mucosal cells transfer α-synuclein to the vagus nerve. JCI Insight. 2026.
- Shah A, et al. A Clinical Practice Update for the Management of Patients With Disorders of Gut-Brain Interaction and Altered Food Intake Behavior. Neurogastroenterology & Motility. 2026;e70337.
- So D, et al. Supplementing Dietary Fibers With a Low FODMAP Diet in Irritable Bowel Syndrome: A Randomized Controlled Crossover Trial. Clinical Gastroenterology and Hepatology. 2022. (Cites 50-70% symptomatic response rate across multiple RCTs.)
Transcript
Jessie (00:00):
Welcome to the IBS Nutrition Podcast, your go-to source for navigating the complex diagnosis of irritable bowel syndrome. Here we dive deep into IBS and discover the power of diets and lifestyle to find freedom from your IBS symptoms. Whether you’re newly diagnosed or have been managing IBS for years, you are in the right place for relief. I’m your host, Jessie Wong, format dietician and a gut expert. For years, I suffered from debilitating gut symptoms that kept me out of work, feeling constant discomfort in my body and anxious around food. Today, I’m in control of my IBS, able to eat the food I love again, travel whenever I want, and spend quality time with loved ones. It is my mission to help you do the same and transform the way you live with IBS. Let’s get started. Hi everybody. Welcome to another episode of the IBS Nutrition Podcast.
(00:54)Today’s guest is someone I have genuinely been wanting to have on this show for a long time. And recently he spoke at Digest Disease Week, one of the largest gastroenterology conferences in the world on IBS constipation and Parkinson’s disease. And his talk was phenomenal because when it comes to understanding IBS and disorder of the gut-brain interaction, this person has quite literally written textbooks published over a thousand research papers and is considered one of the most cited scientists in the world in this field. Let me introduce you, Dr. Nicholas Talley. Dr. Talley is a distinguished laureate professor and neurogastroenterologist at the University of Newcastle in Australia and adjunct professor at the University of North Carolina. He is the director of the National Health and Medical Research Council Center for Research Excellence in Transforming Gut Health and has published over 1600 journal articles with more than 150 citations, which means his research is actively shaping how doctors and dieticians around the world understand and treat functional gut disorders such as irritable bowel syndrome and functional dyspepsia.
(02:16)He is a champion of the Order of Australia and has received the New South Wales Scientist of the Year Award. Before returning to Australia, Dr. Talley spent over a decade on the consultant staff at Mayo Clinic in Rochester, Minnesota, where he served as professor of medicine and professor of epidemiology and was the director of the motility interest group in the division of gastroenterology and hepatology. He was also named a distinguished alumni of Mayo Clinic in 2020, one of only six people in the world to receive that honor that year. His team was also the first in the world to discover a genetic mutation in a subset of IBS as well as a brand new disease called eosinophilic duodenitis found in 40% of people with functional dyspepsia. And he co-authored a landmark clinical practice updates published just this year on a brand new patient category that is reshaping how we think about eating and gut health.
(03:25)Today we are covering three big topics, so grab a seat and get comfortable. First, we are going to have Dr. Talley walk us through what IBS actually is, because even though so many of you have been living with it for years, the science behind it is still widely misunderstood and hearing it from one of the world’s leading experts is something really special. Second, we are diving into the connection between irritable bowel syndrome, constipation, and Parkinson’s disease and what patients can actually do right now given what the science is telling us. And third, we are rounding out this episode with the latest research on eating disorder, disordered eating, and disorder of the gut-brain interaction, including that brand new 2026 clinical practice update that Dr. Talley co-authors, which may change how a lot of you understand your own relationship with food and your gut. Welcome to the IBS Nutrition Podcast, Dr. Talley.
Dr Nick Talley (04:28):
Thank you. Pleasure to be here.
Jessie (04:31):
We are so grateful Dr. Talley is taking the time to come and talk to us. Now let’s dive into our first topic, IBS. So for someone who is newly diagnosed or have been told that they might have IBS, how do you usually describe IBS in plain language to a patient sitting across from you?
Dr Nick Talley (04:51):
Well, I think there’s more and more evidence IBS is a real disease. It’s a clear cut syndrome that we see in practice. We diagnose it based on symptoms because there are not currently well-recognized objective tests, but all of us, many of us are working on developing objective tests that we hope will be applicable in practice in the future. But we see the syndrome very, very clearly in practice. People present with abdominal pain or abdominal discomfort, and it’s related to their bowel habit, particularly diarrhea or constipation or a mixture of both. But the pain can be relieved by opening the bowels or made worse by opening the bowels.
(05:39)When there’s diarrhea, there may well be pain that accompanies this. Same for constipation. And this combination of symptoms is very, very characteristic of what we call irritable bowel syndrome. And IBS is probably several diseases, not one, but it’s certainly a very important condition because it affects, depends on the epidemiology study, but affects up to seven to 10% of the whole world’s population. It’s enormously prevalent. And so this is a very important condition costing billions and billions of dollars in terms of healthcare costs, indirect costs as well, because people lose work sometimes and have their relationships affected, all sorts of impacts of this disease. And it’s very interesting because IBS can start in the gut and then the brain can be affected. So people can start with IBS symptoms and then they can get anxious, depressed, and other symptoms later down the track. And that’s probably driven by the gut dysfunction, gut disease processes.
(06:48)But others with IBS develop it the other way around. Their brain goes first. They get anxious, depressed, they’re under stress, and then their gut becomes abnormal. And that’s probably a different process, but it leads to the same IBS, what we call the phenotype, the same picture of disease. So IBS, very important condition. It’s a real disease in my view. We understand some of the mechanisms. For example, the gut is very, very hypersensitive in IBS typically. There are motor abnormalities which explain why people get diarrhea or constipation or both. The gut’s motor function is disturbed. There’s increased permeability of the gut in some people. There’s microinflammation abnormalities that occur. The mucus layer can be affected. And the microbiome, all those organisms that live within us that keep us healthy are disturbed in IBS typically. And so that’s also an important area of research to sort out the relationship between the microbiome and IBS.
Jessie (07:57):
That’s great explanation. Now, why do so many patients get told their test are normal and sent home without any answers? And what can doctors do to better communicate that tests won’t show up positive?
Dr Nick Talley (08:12):
Well, there’s no doubt if you just do a standard endoscopy, a colonoscopy, an upper endoscopy, you won’t find any pathology when you do this in someone with IBS. And this is why it used to be called a functional gut syndrome. But in fact, that doesn’t mean it’s not a real disease. It just means on that particular approach to testing, it’s unhelpful for this particular condition. So people need to understand that they may well have normal tests. That doesn’t mean they don’t have IBS. IBS is a diagnosis based on the symptom pattern at the present time. It’s very, very characteristic symptom pattern. People need to meet what are called the Rome five criteria for IBS now, which are well-described and available to clinicians to use. And if people meet the Rome five criteria and have normal screening tests, that really is very, very clearly a diagnosis that you can make of IBS.
(09:16)And I think it’s education for the providers. It’s also education for patients to realize that they shouldn’t accept that they’ve got normal tests and there’s nothing wrong with them when they’ve got symptoms. There is something wrong and they need to go and see someone who actually understands these conditions and can make a proper positive diagnosis.
Jessie (09:39):
Absolutely. So even though the tests are normal, it doesn’t mean something is not wrong. There are people that can help. There are treatments and management tools that can really help a patient with irritable bowel syndrome.
Dr Nick Talley (09:51):
There are definitely management approaches that are effective. There are more and more management options now than there used to be. And really patients need the right label, the right diagnosis so they can get the right treatment approach. And the other complicating thing is some people with IBS have other syndromes as well linked to this. And so it may not just be IBS alone. Part of IBS can be other syndromes. And recognizing the whole picture is so important for prescribing the right kinds of treatment approaches because that can lead to substantial symptom relief and certainly a much better outcome for people with the condition. So definitely make sure you seek the right providers to cover that.
Jessie (10:41):
Yeah, I love that to make sure you see the right provider to help you create treatment plans. And I often say that make sure you assemble a team that works for you. Have a PCP, have a GI doctor, have a dietician, have a psychologist, and maybe a pelvic floor therapist if you can find one.
Dr Nick Talley (10:59):
Certainly if you’ve got a complex syndrome, because IBS is a spectrum. There are people with mild symptoms who aren’t terribly badly affected. They need to know the diagnosis and they need to have some treatment, but they don’t necessarily need a whole team to do this. But there’s another end of the spectrum which is really severe. And that group definitely really benefits from a multidisciplinary team approach. And the people that you listed a moment ago would be some of the people you’d want on that team to help provide multidisciplinary care. And we know from randomized trials, multidisciplinary care is better than standard care for the management of IBS. You get much better outcomes. So that’s clearly important.
Jessie (11:47):
Yes, yes. Thank you. Yes. And thank you for advocating for the allied health providers. Okay.
Dr Nick Talley (11:54):
No, they’re very important. I’m very lucky to have dietician support in my clinic, for example. There is some psychology support as well. This is really important for managing people with complex syndromes, and some people are very complex and require complex management.
Jessie (12:12):
Yeah, absolutely. And I hope in the US or in Australia, we will have more and more providers who specialize in this area and can help more patients because there is a lot of patients suffering out there. Okay. One more question on IBS before we move on. What is the role of the microbiome play currently in IBS?
Dr Nick Talley (12:34):
I think it’s fair to say it’s an evolving science, the microbiome in IBS, because it’s a complex area. We know the microbiome is disturbed in IBS. Some people have what’s called small intestinal bacterial overgrowth, which is really a disturbance of the microbiome of the small intestine. Other people will have disturbances in their large intestine in the colon. And in fact, some people of course have both. And that’s well established that there is a change in the microbiome in IBS. But it’s very complex studying the microbiome because not only is it affected by the disease you have, it’s affected by the diet you have, by the exercise you do, by the medications you take, by the environment you live in. It’s very complicated. And these forces all work together to influence the organisms that you have in your gut, and those organisms can keep you healthy or potentially make you unwell.
(13:36)So that’s really important to know. In IBS, there’s certainly been some work on looking to change the microbiome to see whether that can improve IBS symptoms. And so for example, fecal microbial transfer, stool transplant, has been tried in IBS in randomized clinical trials. Now, a few studies have been really very positive and look very promising, but a significant number of other studies have been disappointing and clearly negative. And overall, when you pull them together, the data really are unclear. It’s unclear whether there’s a benefit or not. It’s equivocal. Basically, there’s no great signal. I suspect we just need to get better at doing the science and understanding the microbiome to sort this out. And in the future, I predict we’ll be doing microbiome modulation for some of these syndromes like IBS, perhaps in more sophisticated ways than just giving someone else’s stool to people and hoping for the best, which is kind of what’s been happening up to now in essence.
(14:46)So I think we’re along a path to understand this better. There’s no doubt the microbiome modulates the gut immune response. And in some people with IBS, we have evidence, others have evidence the immune response is abnormal, and that may drive symptoms in some people. So the ways to modulate this, to change it back to a healthy sort of homeostasis, a healthy situation is really where we need to go. We’re not there yet, but certainly it’s an interesting active area of research.
Jessie (15:18):
That’s great. I loved your explanation and the answer. Now, if somebody is hearing an ad or maybe they’re going to a provider who is recommending to test their gut microbiome, what would your advice be?
Dr Nick Talley (15:31):
My advice at the moment would be not to do this because most of the providers, the commercial providers that they use different platforms, you get different results. If you send your stool to five different ones, you’ll get five different results, which will be incredibly confusing and doesn’t help you. And most of the information is unhelpful actually. It just doesn’t tell you what to do unless you’ve got an infectious agent that happens to be there, which is very unusual. We’re doing some work to look at how we can better improve that sort of information that might come back to people if they want to get tested. That’s an area of our research at the moment that we don’t at the present time recommend commercial providers because there just isn’t the quality of information required to change practice at the moment. It may be different in a few years, but right now that’s the situation.
Jessie (16:27):
Well, thank you for clarifying that. I think right now what we see a lot of the practice is people being tested, get this very scientific looking report saying something is overgrowth, something is lacking, and then they’re put on a protocol or restrictive diet and test again in a few months. And we have seen a lot of patients spending a significant amount of money just getting stool tests and then doing these protocols multiple times with no results.
Dr Nick Talley (16:54):
And there’s no scientific evidence to support microbiome change driving diet advice. There’s very good diet advice for IBS, but that’s not the approach to take.
Jessie (17:05):
Yes. Well, let’s talk about dietary advice for IBS from your perspective.
Dr Nick Talley (17:10):
Well, look, I think it depends on the patient, on the subtype of IBS they have, and on their willingness to go in a dietary trial and take this approach. There’s still some standard dietary approaches that can be helpful, very simple dietary advising. For example, increasing dietary fiber a little bit to see whether that can help improve bowel function and reduce bowel spasms, if you like, reduce the pain that people have. And some people are minority in my experience, but some people respond well to this. And sometimes using a fiber supplement can be very helpful in this setting. So that’s one very, very simple approach. But I think the most impressive data remains with the low fermentable carbohydrate diets, the low FODMAP diet approach, which was really spearheaded by Monash University and the group down there in Australia. And that diet’s been shown to improve IBS symptoms in 50 to 70% of IBS patients who are adherent to the dietary protocol.
(18:20)And that’s impressive. I mean, 50 to 70% is a very significant number of people who will improve. The most important thing about the diet is to have an expert help guide you through this, in my opinion. I think it’s hard to do this on your own. There are apps available, there are books out there, there’s information, but it’s hard to do on your own. So I always tell patients, please, it’s important that you get expert guidance here. And the other thing is you don’t go on a low FODMAP diet and stay on that permanently. The idea is to go on that for a period of time and then have reintroduction of food so that we can identify what’s really precipitating symptoms and have that removed from the diet. So you are the expert there rather than me, and my dietician’s the expert rather than me as well.
(19:14)And I have a series of very good dieticians who I work with in research and in practice, and they do a fantastic job managing this. And that’s really been helpful for many patients with IBS symptoms. And randomized controlled trials really support the view that low FODMAP diet is a scientific methodology. There are other diets you can try. The Mediterranean diet’s looked promising recently as an alternative. The Mediterranean diet seems to be good for everything as far as I can tell. So there are alternative diet approaches, and I’m sure there’ll be improvements in dietary approaches in the future. The other one that people are exploring is something like the six food elimination diet, a food andigen elimination approach where it’s a little bit simpler to take out milk and wheat and so forth out of the diet. And some people respond well to food andigen removal actually, and that’s clearly the case.
(20:19)So that’s another alternative approach you can talk about with your dietician expert. But the low FODMAP diet’s my go-to at the present time.
Jessie (20:28):
Yeah, absolutely. And for our listeners listening, we do have two episodes that talks about diets for IBS. Episode number three is about what is the best diet for IBS. And number five is about the low FODMAP diets. And like what Dr. Talley was just saying, it’s not the long-term diet. You really have to do the reintroduction phase to understand your triggers so you’re not staying stuck, which we are going to talk in a little bit about a person’s relationship with food when you have a functional gut disorder such as IBS. All right, thank you so much for all of that information. Let’s move on to Parkinson’s disease. This is a fascinating area, and I think a lot of us are not even thinking that far down the road, but does Parkinson’s disease start in the gut? What is the science telling us?
Dr Nick Talley (21:19):
The answer’s probably yes. And it’s a very, very interesting relationship and it’s something that my research group has become very interested in in recent times. So we know that up to 80% of patients with Parkinson’s have constipation as one of their key symptoms. Some of these Parkinson’s patients also have IBS. They clearly have IBS clinically. They fit the syndrome, they meet the criteria, the ROME criteria. Interestingly, these bowel symptoms can begin years, decades even earlier. And later on, Parkinson’s disease evolves. And there’s a theory that Parkinson’s disease in a subset, a major subset of the disease cohort begins in the gut. The AlphaSynuclein, the abnormal folded proteins, they deposit in the enteric nervous system. They appear to climb up the vagus nerve. Because if you cut the vagus nerve, you are protected from Parkinson’s disease, very interestingly. And they appear to go up to the brain and they deposit up there.
(22:36)And of course, then the manifestations of the motor symptoms and the other features of Parkinson’s disease can begin. This hypothesis has been out there for 20, 25 years now, but we’ve become very interested in this idea of, well, if that’s the case, can we study the various pathways that are abnormal in IBS and constipation and in Parkinson’s to see whether we can learn where we might intervene to prevent Parkinson’s in the future? That’s the thinking. And we’ve got some preliminary data that we presented at DDW and just got published, which suggests that the microbiome’s abnormal in Parkinson’s disease. We’ve known that, and it’s abnormal in IBS. The bacterial composition is different in Parkinson’s from IBS, but the functional consequences of the bacteria are very, very similar. And some of the pathways in Parkinson’s are there in IBS too, which is very interesting at least to us.
(23:46)And it’s not just the bacteria, it’s the immune system’s response to the bacteria that is abnormal in Parkinson’s disease. It’s a clear immune stimulation. The gut gets turned on in Parkinson’s. The gut immune system gets turned on in Parkinson’s. We think that’s fascinating because that can be modulated potentially by doing something at the microbiome level. And there’s preliminary evidence too that some diets may slow Parkinsonian progression, which would fit with the hypothesis that yes, if you modulate the microbiome and diet’s one way to do this, then perhaps you can actually impact Parkinson’s disease risk. So we’re going to follow that up, and that’s where we’re going with some of our – Jessie (24:36):
That’s fascinating. Now, when you say the protein started in the enteric cells, are we talking about the colon or are we talking about the small intestine or is it throughout?
Dr Nick Talley (24:45):
It’s a good question. Most people have thought it was the colon, but actually it may well be the small intestine that gets impacted. And the animal work’s been mostly in the colon, but the small intestine could also be affected. And it’s probably the small intestine where this is all going to be most important. And indeed, our view remains IBS often starts in the small intestine. It’s often a small intestinal disease, although many have focused on the colon rather than the small intestine because the small intestine’s harder to get to. But it looks like that’s a very promising avenue for IBS and a promising avenue for Parkinson’s too.
Jessie (25:28):
That’s very interesting. Now, if this is a provider talking to our patients, trying to get to a better understanding of what may be going on, how can they distinguish whether something, the problem might be coming from the colon or the small intestine? What are symptoms that we are looking for?
Dr Nick Talley (25:45):
It’s difficult because you can get diarrhea from the small intestine or from the colon, of course, from both. Water secretion occurring abnormally in either area can lead to diarrhea. So symptoms don’t really discriminate. People think constipation might discriminate, but I’m not sure that’s true either completely. It may be partially true if there’s slow transit, but many patients with constipation actually have pretty normal transit times. So that doesn’t necessarily mean the colon’s abnormal even if you’re constipated. So I don’t think symptoms help differentiate. And the only way you can really differentiate is to understand what’s going on at a mechanistic level. And taking samples, for example, of the mucosa and looking at the microbiome along the lining of the gut, looking at the immune system firing up from the cells lining the small intestine. And you can do that in the laboratory. And that’s some of the work we’ve done in functional gut diseases to try and ascertain how much is small intestine versus other areas.
(26:51)And the small intestine is remarkably important. For example, there’s infiltration of abnormal cells in IBS in some people, mast cells in some people, which you can see in the small intestine, but really we can’t find in the colon at all. So I think the small intestine’s a good target area, which has been understudied until relatively recently.
Jessie (27:18):
Thank you for sharing that. That’s very different than what we’ve been told for a long time when it comes to IBS. Now you were talking about IBS and constipation can proceed Parkinson’s. Are we talking about all types of IBS or is it diarrhea, constipation or mixed or both?
Dr Nick Talley (27:36):
It’s not clear. We suspect it’s IBS constipation because constipation’s such an important symptom in Parkinson’s, but there are some published data. There’s a bit of mixed information here. Some published data. There’s a very nice study, came out a couple of years ago, big study from the US, which suggested IBS non-constipation could also be a risk factor. So we’ll have to wait and see if that pans out or not. And that’ll be an area that we’ll do some work in down the track that we’re planning to look at that particular issue. And I want to emphasize the fact you’ve got IBS doesn’t mean you’re going to get Parkinson’s disease. It’s a relatively uncommon outcome. But the point is if we can understand this better, we can help people with IBS and we can help people, of course, with Parkinson’s disease as well. And that’s the ultimate goal.
Jessie (28:31):
Well, I love you saying that. I think we can all take a breather rights now thinking, okay, yes. Now, if somebody who is young who have IBS and/or constipation, what would you recommend the patient to do? What about treatment?
Dr Nick Talley (28:46):
I think a healthy diet is what I recommend actually. Healthy lifestyle, healthy diet. It slows the progression of neurodegenerative diseases in general, including Parkinson’s. So a healthy lifestyle is only going to be beneficial for everybody who’s got these gut conditions. I very much hope most people are not predisposed to developing Parkinson’s. I’m sure that’s not the case. And we need to understand why people who don’t have familial Parkinson’s, because there is a subset where it’s genetic. But in people who have sporadic Parkinson’s, we need to understand why they might later on develop this. And that’s going to be something that I hope we’ll also be doing some work in. The environmental factors that drive this disease remain uncertain, but Parkinson’s is increasing in the population, so there is something going on in the environment.
Jessie (29:41):
Okay. Well, we do really look forward to those studies, hoping it will come out soon. All right. So if a patient’s with constipation and IBS, would you recommend treatments as soon as possible? And also like what you were saying, making dietary and lifestyle changes to improve overall health
Dr Nick Talley (30:00):
I think I would recommend certainly diet, exercise, and appropriate healthy lifestyle changes to every patient with any syndrome actually. But yes, I think for constipation, diet’s a critical issue for at least a subset of these people. Being careful not to mix up those people who need dietary approaches from those who’ve got pelvic floor dysfunction, pelvic floor dysenergia, which means they’ve got a problem in the muscles at the lower end that need fixing rather than something else. And also, of course, people with medication-induced constipation. There are lots of other causes of constipation that you need to think about when you are assessing somebody, but definitely dietary approaches are helpful. I don’t think people should be anxious about developing something like Parkinson’s in 30, 40 years down the track. I think that’s unlikely to occur. But of course, we want to prevent that in those who are at risk, and that will be the future research I hope that will come out from ours and other studies.
Jessie (31:05):
Okay, thank you. And for those of you listening, actually, Dr. Tricia Pasricha was on here recently promoting her book That We’ve Been Pooping All Wrong. You’ve Been Pooping All Wrong. And for anybody listening, if you have constipation, go check out that book, go listen to that podcast episode. It’s very enlightening. And she’s also a researcher in this area, understanding Parkinson’s and irritable bowel syndrome and constipation. Okay. Well, thank you so much for all of your knowledge here, sharing everything, and we really hope there’s more research to come, but we also know that a lot of these research will take time and we’ll just have to wait for the time being. Now, let’s move on to my favorite topic as a dietician. Okay. I think you keyed a new term here. Altered food intake behavior in patients with DGBI, which is disorders of the gut-brain interaction, and IBS is classified as a DGBI.
Dr Nick Talley (32:05):
Yeah, this is a very important area, and we’re seeing this more in practice as well. So we now know patients with IBS and related functional gut syndromes may have a real problem with eating normally because their gut dysfunction basically stops them from eating normally. And in particular, they may well have symptoms after they eat, so they can’t finish a normal meal, so it’s very uncomfortable or painful, or there’s other issues that occur after eating, so people cannot eat normally. And this is not a primary eating disorder. This is a secondary phenomena, secondary to the gut dysfunction, the gut symptoms that people with IBS and other functional gut syndromes experience. So we believe, and this consensus certainly agreed that was just published, that we’ve been misclassifying some of these people who have disturbed eating with a functional gut syndrome. We’ve been misclassifying them as having an eating disorder when in fact they’ve got something that’s really secondary to their gut dysfunction.
(33:20)And the treatment needs to focus on addressing the gut dysfunction as a really key issue and not just the eating disturbance per se, because that’s the differentiation between an eating disorder and this gut-driven food avoidance. Anyway, so that’s what the consensus suggested. And we think this is particularly important because there’s been a group of patients coming to see providers like myself and others around the world who really are asking now for enteral nutrition as part of the management. And unless they’re grossly malnourished or really unwell, giving an enteral feeding tube in this setting doesn’t help reduce symptoms and does not improve the outcome for people really at all. And what’s worse, people, if they are given a tube, usually don’t tolerate much in the way of feeds anyway because the gut isn’t working properly. So bottom line is it’s a failed strategy in many cases with risks.
(34:33)So this consensus suggested that you needed to be very judicious with when you might decide to give an enteral feeding tube approach to somebody with difficulty eating and severe IBS or other related syndrome.
Jessie (34:49):
Well, that’s taking the approach to the extreme, I think, there with a feeding tube.
Dr Nick Talley (34:56):
I think so. And I think there are ways that there are pharmacological approaches, there are dietary approaches, oral intake approaches that can be helpful.
Jessie (35:05):
Yeah. Great. Great. I’m glad we agree on that. And we know that a lot of IBS patients starts eliminating food even before they see a dietician or sometimes even before they see a gastroenterologist such as putting themself on the low format diets, gluten-free, dairy-free, and sometimes even cutting out a whole food group. At what point does this become a red flag for something more serious?
Dr Nick Talley (35:32):
Look, I think if the restricted eating began first, if people start to restrict and then get GI symptoms, that’s probably a really big red flag. That suggests there may well be a primary eating problem rather than a primary gut problem. Again, the consensus suggested actually asking patients specifically about what began first and what led to what, because that’s really, really helpful. And I think people who are really severely food restricting with a functional gut syndrome, I think those people, they are potentially at risk of an eating disorder, either developing one afterwards after their gut problem or having one primarily. And the people who I’ve seen severely restrict have often had a history of past eating disorder, and now they’ve got gut symptoms, and now they’re restricting again. And those people, I think, need expert eating disorder support as well as gastrointestinal and dietician support to be able to be managed most effectively.
Jessie (36:46):
Okay. Well, now let’s zoom out a little bit talking about a broader group of patients who have GI symptoms and are food restricting. Sometimes we see weight loss and nutrition deficiencies. What does the treatment pathway look like for these group?
Dr Nick Talley (37:02):
Well, I think refeeding is really important, but the preference is to do this orally and provide oral supplements as appropriate. You may have to try multiple different supplements to find success. Some patients tolerate one supplement, but can’t tolerate 10 others for reasons that aren’t clear to me at least. But that certainly is the anecdotal experience. So I think really this is where the dietician plays such a crucial role in both assessing the nutritional status and providing appropriate advice so that the caloric intake and the balance of the diet is sufficient for that particular individual in front of them. And foods which are clearly precipitating symptoms, assuming it’s not everything, foods that are clearly precipitating symptoms can also be potentially hopefully excluded at least for a short period of time as part of the management process. But the refeeding’s really important here because regardless of what’s going on, if that isn’t done successfully, that leads to longer term issues in terms of management that are difficult to address.
(38:15)For primary eating disorders, refeeding remains the absolute critical piece of the puzzle as well. So regardless of whether it’s a primary eating disorder or whether it’s secondary to a gut syndrome, food avoidance because of the gut syndrome, the refeeding, the dietician support, absolutely essential. And we always get the dietician involved in this setting. Yes.
Jessie (38:40):
And in cases like this, if we see them in clinics, we really start challenging food as soon as possible when their symptoms are more at baseline to pinpoint the triggers so a patient is not cutting out everything because we have seen a lot of cases where they put themselves on lymphomet for a long time, gluten-free, dairy-free, when in reality they can actually tolerate a lot of those foods, but maybe a few smaller ones that they might have to restrict from their diets.
Dr Nick Talley (39:06):
There’s no doubt about that. Even lactose deficient patients, people with no lactose, they can’t break down lactose, they can’t break down milk products. Many of them will tolerate normal amounts of lactose completely without any symptoms. There are a few who get symptoms possibly because their microbiome’s a bit different actually. Some of the people with lactase deficiency do get symptoms after milk products, but not everybody. So the people who completely cut out milk in that setting don’t need to in almost all cases. And the same with gluten-free. If you haven’t got celiac disease, you don’t have to be on a rigid gluten-free diet. You can reduce gluten that may improve symptoms in some people, but you don’t have to be on a rigid, totally gluten-free diet typically anyway. So again, that’s another issue in terms of misunderstanding that can occur.
Jessie (39:58):
Right. Okay. Well, thank you so much for sharing all of that. And of course, how we see disorder of the gut-brain interaction and how people are changing the way they eat and what we can do better as providers to support them. Well, actually, one last question about that. What would you say to physicians treating DGBIs and they are noticing patients are cutting out a lot of foods? How would you recommend them changing their approach when telling patients what to and what not to do? What I’m seeing in the US is the low OMAP diet has been recommended left and right, whether the patient find it themself online or they hear it from their doctors without being referred to a dietician.
Dr Nick Talley (40:41):
So I think that’s a very good point. I want to make this point actually. A low FODMAP diet, an exclusion diet, a strict exclusion diet is contraindicated if people are severely restricting food already. It is contraindicated because you risk putting people into a primary eating disorder in the near future if you then prescribe a restricted diet as part of the management. And I think a lot of providers don’t recognize that risk. And there are some studies, and not great studies, but there are some studies which support the view that is a risk. And in fact, in that consensus you mentioned, it was recommended you do not use a food restriction diet in the setting of someone already severely food restricted. So that’s number one for providers to understand. And then I think doctors aren’t well trained in nutrition and dietetics. This is part of the problem, but they need to understand a little bit about this and certainly be encouraging patients to ensure their intake is adequate, to be minimizing restrictions that are unnecessary, and to see an expert, a dietician, nutritionist, an expert who can help guide them if that isn’t working as part of the management.
(41:59)So that’s really important. You don’t have to know everything as the gastroenterologist or the neurogastroenterologist, but you need to know where to seek help.
Jessie (42:10):
Yeah, absolutely. I think that is one of my big concern, especially attending DDW every year. Little for my diet is mentioned 20, 30 times or in a lot of presentations. But what is not being mentioned is the referral to a dietician so that patients don’t get hurt from being on a restrictive elimination diet. And thank you so much for saying all of that. Okay, last question before I let you go. What is one thing that you would change about how IBS is being diagnosed or managed currently? What would it be?
Dr Nick Talley (42:46):
It would be that every doctor who sees patients with gut symptoms recognizes IBS and can make a positive clinical diagnosis without doing so many tests that some people order, which are unnecessary. That would help patients and that would get patients on the road to the appropriate management earlier. And that would lead, I think, to better outcomes for everybody with this condition. So that to me seems still an issue that is not solved even today.
Jessie (43:19):
It is. And I’m very hopeful the room five criteria can help shorten the time that it takes to get to the right diagnosis. Thank you so much, Dr. Talley. We really appreciate you taking the time to talk to us today.
Dr Nick Talley (43:33):
Thank you for having me.
Jessie (43:34):
Thank you for tuning into the IBS Nutrition Podcast. We hope today’s episode has brought you closer to understanding and managing IBS. Remember, you are not alone on this journey and finding freedom is possible. For more on IBS, make sure to follow us on your favorite podcast platforms and please leave us a five-star review. We would really appreciate that. You can access links mentioned in this episode in a show notes. To learn more about your type of IBS and how to identify your own food or lifestyle triggers, register for our free IBS masterclass, Three Steps to IBS Relief for our proven holistic three-steps approach to managing IBS once and for all. Head to IBSDietician.com/masterclass to register. Until next time, take good care of your guts and here’s to your health and happiness.
Free Resources to Help You Get Started:
| Resource | Link |
| IBS Nutrition Podcast | ibsdietitian.com/podcast |
| Free Low FODMAP Starter Guide | ibsdietitian.com/fodmap-diet-pdf |
| IBS Patient Toolkit | ibsdietitian.com/resources |
| Free Symptom Tracker | poopedia.org/resources |
| Stool Education (Poopedia) | poopedia.org |
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