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Non-Celiac Gluten Sensitivity vs. Celiac Disease: What’s Really Behind Your Gut Symptoms

Non-Celiac Gluten Sensitivity vs. Celiac Disease: What’s Really Behind Your Gut Symptoms
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Do You Need To Be Gluten Free For IBS? Celiac? Non-Celiac Gluten/Wheat Sensitivitiy

If you’ve ever felt better after cutting out bread, pasta, or anything with wheat in it, you’ve probably wondered whether gluten is the real problem, or whether something else was going on. It’s one of the most common questions in the gut health world, and it’s also one of the most misunderstood. Gluten has become an easy target, but the research tells a more complicated story.

This article is based on a conversation with two experts who have spent their careers studying this exact question. Dr. Stefano Guandalini is professor emeritus and former chief of pediatric gastroenterology at the University of Chicago and co-founder of the university’s Celiac Disease Center. Associate Professor Jessica Biesiekierski leads human nutrition research at the University of Melbourne and has played a central role in shaping how the medical community understands non-celiac gluten sensitivity. Together, they help explain what celiac disease actually looks like, what’s happening when someone reacts to wheat without having celiac disease, and why so many people improve on a gluten-free diet for reasons that may have very little to do with gluten itself.

Why Celiac Disease Is So Often Missed

Celiac disease is an autoimmune condition triggered by gluten, and according to Dr. Guandalini, its prevalence appears to be rising worldwide. Since genetics don’t change quickly, the increase is thought to be connected to environmental factors, with gut microbiome research currently generating the most interest, though no single cause has been identified.

What makes celiac disease particularly tricky is how often it goes undiagnosed, even in places where awareness is relatively high. Dr. Guandalini pointed to a large screening study of school-age children in Italy, a country known for strong celiac awareness, that found a combined prevalence of about 1.6 percent. Even there, roughly 60 percent of those found to have celiac disease had no idea they had it.

Part of the problem is that the classic image of celiac disease, a young child with a distended abdomen, poor appetite, and chronic diarrhea, is becoming less common. Many people with celiac disease instead experience symptoms outside the digestive tract entirely, including headaches, joint pain, anemia, hair loss, and in some cases neurological symptoms such as ataxia or, rarely, seizures. Because these symptoms don’t obviously point to the gut, they’re frequently missed. Dr. Guandalini shared that in one survey of adult hematologists, a majority said they wouldn’t test a child with unexplained iron deficiency anemia for celiac disease unless GI symptoms were also present, despite anemia being a well-documented presentation of the condition on its own.

Family history matters too. First-degree relatives of people with celiac disease have a meaningfully higher likelihood of also having it, yet many never get tested simply because they don’t have symptoms.

How Celiac Disease Is Actually Diagnosed

Diagnosis typically starts with a blood test measuring tissue transglutaminase (TTG) antibodies. If those levels are significantly elevated, a second, more specific antibody test (anti-endomysial antibodies, or EMA) can often confirm the diagnosis without needing a biopsy at all. According to Dr. Guandalini, updated pediatric guidelines from Europe allow clinicians to skip the biopsy in roughly half of cases where both markers are clearly positive. When TTG levels are only mildly elevated, a small intestinal biopsy is generally still needed to confirm the diagnosis, since EMA testing tends to be less sensitive at lower antibody levels.\

celiac disease diagnostic testing algorithm

Image source: Mayo Clinic

This is exactly why both experts stressed a point that matters for anyone currently pursuing testing: don’t restrict gluten before you’ve completed the full testing process. If you reduce or eliminate gluten before your blood work, or even before a follow-up biopsy, the results may not accurately reflect whether you have celiac disease. In the episode, the general guidance shared was to continue eating gluten consistently, framed as roughly four servings a day (for example, two slices of bread or half a cup of pasta count as two servings), until all recommended testing has been completed. This applies to the low FODMAP diet as well, since many people following it are unintentionally reducing their gluten intake at the same time.

What Non-Celiac Gluten Sensitivity Actually Is (Non-Celiac Wheat Sensitivity)

For people who react to wheat but test negative for celiac disease and wheat allergy, the term used has typically been non-celiac gluten sensitivity, or NCGS. But according to Dr. Biesiekierski, that name may not accurately describe what’s happening.

Unlike celiac disease, NCGS doesn’t involve intestinal damage or a clear immune marker. Instead, current research points toward the gut-brain connection, meaning symptoms are shaped by how the gut and brain communicate rather than an immune attack on the gut lining. Dr. Biesiekierski was clear that this doesn’t make the symptoms any less real. People experiencing gut pain, bloating, altered bowel habits, fatigue, or brain fog after eating gluten-containing foods are having a genuine physical response. The question is what’s actually driving it.

She used the example of a bowl of pasta to illustrate the problem. That bowl contains gluten, but it also typically contains fructans (a fermentable carbohydrate and part of the FODMAP group), plus a sauce that may include onion and garlic (more fructans), tomato (which contains natural food chemicals called salicylates), and possibly wine or coffee alongside the meal. Any one of these, or a combination, could be contributing to symptoms, which makes it very difficult for someone to correctly identify gluten as the culprit just by noticing they feel better without pasta.

Research summarized in a 2024 Lancet paper Dr. Biesiekierski co-authored, drawing on roughly 60 studies including double-blind gluten challenge trials, found that gluten-specific reactions are uncommon and, where they do appear, are often small and not reproducible. In several trials, participants reacted just as strongly, or more strongly, to a placebo as they did to actual gluten. A separate trial from Norway found that fructans caused more bloating than gluten itself. Based on this body of evidence, Dr. Biesiekierski’s research group now frames non-celiac gluten sensitivity as sitting much closer to IBS and the gut-brain interaction spectrum than to celiac disease.

The Placebo and Nocebo Effect, Explained

One of the more striking points in the conversation was the size of the placebo response seen in gluten trials. Across nearly 20 double-blind randomized controlled trials involving thousands of participants, Dr. Biesiekierski noted that around 40 percent of people reported symptoms in response to a placebo, not actual gluten.

This connects to something called the nocebo effect, where the expectation of harm can genuinely trigger physical symptoms. Dr. Biesiekierski explained this isn’t imagined or exaggerated. It involves measurable changes in nervous system activity and pain processing. When the brain expects a food to cause harm, it can amplify normal gut signals into pain, urgency, or discomfort, a concept often described as visceral hypersensitivity. This is one reason working with a GI-focused psychologist can be a valuable part of care for some patients, alongside dietary strategies.

Why Do People Feel Better Gluten-Free, Then?

If gluten-specific reactions are relatively rare, why do so many people genuinely feel better after cutting it out? Dr. Biesiekierski offered a practical explanation: removing gluten usually means removing a lot more than gluten. It often means cutting back on ultra-processed foods, becoming more intentional about eating in general, and feeling a sense of control over symptoms, all of which can genuinely improve digestion, particularly for people with a sensitive gut or IBS. Simply feeling reassured that a “problem food” has been removed can also help calm the gut-brain system.

A Note on Terminology: Is “Gluten Sensitivity” the Wrong Term?

Dr. Guandalini made a strong case that the name non-celiac gluten sensitivity is misleading. Since the evidence for gluten specifically triggering symptoms is limited, while reactions to wheat as a whole (including components like ATIs, proteins found across many cereals) are somewhat better supported, he suggested “wheat intolerance syndrome” is a more accurate term. He also pointed out that the word “sensitivity” implies an immune response that hasn’t been demonstrated, and argued “intolerance” is more appropriate.

He was also candid that, in his experience and after reviewing the available research, he remains unconvinced this condition exists in children, a position he has expressed in writing in response to a widely cited pediatric study.

What This Looks Like in Clinical Practice

In my own practice, most patients arrive having already eliminated several food groups on their own, often starting with dairy, then gluten, sometimes an entire FODMAP category, without a structured way to figure out what’s actually responsible. Restricting the FODMAP group means removing far more than gluten, including a wide range of fruits, vegetables, and other foods, which can leave the gut increasingly sensitive over time.

Our approach typically starts with stabilizing symptoms based on the person’s IBS subtype, then reintroducing foods one at a time to identify actual triggers rather than assuming. When gluten specifically seems to cause a reaction, we sometimes use gluten-containing foods that are also low FODMAP to help distinguish whether fructans or gluten itself is the trigger. For patients who do react to gluten and where celiac disease can’t be ruled out, genetic testing (checking for the HLA-DQ2 and DQ8 genes) can be a helpful tool, though it isn’t diagnostic on its own, and testing standards continue to evolve.

IBS diarrhea explained

If diarrhea is the part of IBS that keeps you stuck at home, constantly anxious about leaving the house, or fearful of eating, you’re not alone. Many people living with irritable bowel syndrome (IBS) struggle with unpredictable and persistent diarrhea, often without understanding what’s causing it—or how to stop it for good. Listen to this related episode for more information.

When to Seek Professional Guidance

If you suspect celiac disease or a wheat-related reaction, the most important step is to get tested before making dietary changes. Undiagnosed celiac disease and prolonged, unstructured food elimination both carry real downsides, from missed diagnoses to unnecessary long-term restriction. Working with a doctor and a dietitian who can guide testing and structured reintroduction gives you a much clearer answer than trial and error on your own.

The Bottom Line

Gluten is often blamed for symptoms that may actually be coming from fructans, other FODMAPs, food chemicals, processed food intake, or the gut-brain connection itself. Celiac disease is a distinct, testable autoimmune condition that requires accurate testing before any dietary changes are made. For everyone else experiencing symptoms after eating wheat, the current research suggests the picture is more nuanced than “gluten is the problem,” and understanding what’s actually driving your symptoms usually requires a structured approach rather than guesswork.

Medical accuracy notes

A few points worth verifying before publishing, since they come from spoken conversation and involve specific figures or claims:

  • The Italian screening study statistic (1.6% combined celiac prevalence, 60% previously undiagnosed) should be checked against the original source for exact figures and citation.
  • The claim that “8% of celiac patients with GI symptoms have constipation” should be verified against a citable source.
  • The “82% of hematologists” survey statistic should be sourced and confirmed before publishing, as no citation was given in the transcript.
  • The nocebo response figure (“around 40%” across nearly 20 trials) should be checked against Dr. Biesiekierski’s published Lancet paper for exact wording and figures.
  • The statement “we know IBS do not cause nutrient deficiencies” is a fairly absolute claim and should be reviewed or softened, since it wasn’t elaborated on further in the transcript.
  • The DQ7 gene and its planned addition to celiac genetic testing recommendations should be confirmed with the Celiac Disease Foundation or a current clinical source, since testing guidelines can change.
  • The mention of a specific “four servings of gluten per day” and “10 to 12 weeks” gluten challenge guidance reflects conference discussion referenced by the host and should be checked against current official testing protocols before being presented as a firm recommendation.
  • Confirm that the research study link (gutresearchstudy.com) and its recruitment details (US and Australia, 12-week duration) are still accurate and active at time of publishing.
Transcript

Jessie (00:01):
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 discomforts 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. All right. Hi everybody. Welcome to another episode of the IBS Nutrition Podcast.

(00:55)Today, we are tackling a topic that brings so much confusion, anxiety, and frustration to the gut health community, gluten and wheat. To help us unpack this, I am beyond thrilled to welcome two world renowned experts to the show. First, we have Dr. Stefano Guandalini. He is professor emeritus and former chief of the section of pediatric gastroenterology at the University of Chicago, a member of several academic societies. He served as president of Aspen European Society for Pediatric Gastroenterology, Hepatology and Nutrition. Dr. Guandalini’s main interests throughout his career have been diarrhea diseases, celiac disease, and the clinical use of probiotics. He authored 200 original publications and over a hundred invited reviews in peer-reviewed journals and contributed over 30 chapters to gastroenterology textbooks. His publications have been cited over 14,000 times. He served as the main editor of six books, among which the Textbook of Pediatric Gastroenterology, Hepatology and Nutrition published in 2022 for Springer and currently undergoing an update for another edition.

(02:23)And in 2025, he authored the second edition of Essential Pediatric Gastroenterology, Hepatology and Nutrition for McGraw-Hill. Dr. Guandalini, thank you so much for joining us here.

Dr. Stefano Guandalini (02:38):
It’s my pleasure. Thank you for the invitation. And I’m sorry that all the titles you had to put took me so much time. So I apologize for that.

Jessie (02:49):
I think I missed one of the title. You are one of the co-founders at the Celiac Disease Center at the University of Chicago. Is that correct?

Associate Professor Jessica Biesiekierski (02:59):
Yes.

Jessie (02:59):
Yes. We are just so glad you’re here. And we are also joined by Associate Professor Jessica Besekeski or Jess. So for listeners, there’s two Jessie and. Well, there’s a Jessie and Jessica on the show. If we say Jess, it means Dr. Biesiekierski. And if it’s Jessie, that would be me, the IBS dietician. So Dr. Jessica Biesiekierski, she is the head of human nutrition at the University of Melbourne and a National Health and Medical Research Council Emerging Leadership Fellow whose research examines how diet shapes GI functions and gut-brain interactions. She has been central to the global debates on non-celiac gluten sensitivity and from early studies that helped define the condition to recent work, reframing it from within the gut-brain interaction spectrum, and now leads international clinical trial testing how to personalize dietary and behavioral care for IBS. Her contribution has been recognized through awards, including the Nutrition Society of Australia Meat Career Award in 2024, the International Rome Foundation Research Award for Original Global Research in DGBI in 2024, and two Rome Foundation prizes for the most cited research in functional GI disorders. She works closely with clinical industry and international partners to translate gut science into practical nutrition solution that improve patient outcome. Jess, we are so glad you’re here.

Associate Professor Jessica Biesiekierski (04:40):
Thank you so much for having me. Pleasure to be here.

Jessie (04:43):
We are really looking forward to talking about celiac disease, gluten tolerance, and non-celiac wheat sensitivity today. So for our listeners today, we have four major topics we are going to dive into. Number one, celiac disease, diagnostic methods, and why it is so difficult to diagnose. Number two, Jess is going to explain her recent research on non-celiac wheat sensitivity and what is really happening in your gut and brain. And number three, Dr. Guandolini is going to talk about non-celiac wheat sensitivity and maybe why the term non-celiac gluten sensitivity might be a misnomer. All right. And number four, I’m going to share what I see in clinic when it comes to true gluten intolerance versus fructin intolerance and why it is very dangerous for patients to self-diagnose and restrict food. All right, let’s dive into celiac disease. Dr. Guandolini, can you talk to us a little bit about celiac disease, the prevalence, diagnosis rate, and diagnostic method and why it is so difficult to diagnose?

Dr. Stefano Guandolini (05:50):
Sure. So how many hours do you have?

Jessie (05:53):
We have as much time as you need.

Dr. Stefano Guandolini (05:56):
I mean, your questions are enough to fill a whole symposium, three day symposium, but I’ll try to condense that as much as possible. So I would say in terms of the prevalence of celiac disease, this is a kind of a moving target because the prevalence appears to be increasing worldwide. More so in some areas, less so in other areas, but in general, the trend is to increase. Since this is a multifactorial disease, that is there is a genetic component and there are environmental components, one cannot think that there are genetic changes occurring in such a brief period of time. So what is changing is the environment. And here, really every gas is still open, but most of the recent research seems to point toward the influence of microbiome. The microbiome in the gut is playing a central role in many conditions, but certainly also in celiac disease and drug development that are very interesting.

(07:07)We are not at the point of identifying a single or even a multi-strained probiotic to solve the issue of celiac disease for sure, but things are progressing in a very exciting manner in this regard. Be what it is, the prevalence again is increasing. In Italy, for instance, my friend, Carlos Catasio, who is an epidemiologist of celiac disease and has been looking at this issue for many years. Recently, well, yeah, a couple of years ago, published the result of a large number of children of school age being tested in Italy and found that the prevalence combining those who already knew that had celiac and those who did not raise to about 1.6%. So that’s one in 60 children have celiac disease. And again, there are areas in which this is more common. But even in Italy where the awareness is so great about this condition and people think about it and test for it often, even there in this analysis, 60% of those who are eventually found to have celiac disease by certain criteria, 60% of them did not know.

(08:27)So it was just a discovery of a screening condition. In fact, there in Italy, there is already now a national new law that is demanding to begin early next year with the mandatory screening with celiac disease. Now that’s a controversial issue because I think everybody can see pros and cons. The pros, of course, as that you diagnose people and children that would not have been diagnosed. But the difficulty are, if you do this test, let’s say at three years of age, and then you don’t repeat it, you miss all those that will develop celiac disease later. And as you know, this condition can have its onset at any point in time, a few months after beginning to eat gluten until you are a hundred years old. So then what do you do? You have to repeat it. And then if you repeat, it becomes really costly. And so is it worth it? How much money are we saving?

(09:32)And do really people who have no symptoms and need to be diagnosed, or can they stay just on gluten and forget about being diagnosed? There is no clear cut answer, even though the majority of the evidence seems to point to the fact that even those who have no symptoms or minimal symptoms are still at risk of developing other autoimmune conditions and developing even possibly malignancies. So going back to your question, I think I addressed a part of the prevalence again in the Western world that appears to be around 1%, one to 2% more higher in the Scandinavian countries or in the Sub-Saharan Africa for some reasons. But once you start looking for celiac disease, you basically find it. It’s hard to diagnose because people don’t think of celiac disease and it can be presenting with many manifestations. And actually the classical presentation that I used to see when I started practicing medicine, that is the child, the young child with a large abdomen, very irritable and anemic and with lack of appetite and lots of diarrhea, that presentation is really now becoming more and more rare.

(10:55)Extraintestinal manifestations such as headaches or associated autoimmune conditions can be presenting manifestations. And people don’t think of it. I remember when I was in the committee of reviewing abstracts submitted for a major Congress, there was a question. One survey was directed to hematologists, adult hematologists. And the question was, if a child presents with unexplained iron deficiency anemia, would you test this child for celiac disease? Well, 82% of those that responded to survey say, no, I don’t see the need because if there are no gastrointestinal manifestation, they cannot have celiac disease. So clearly there was at least a few years ago, but I still think there is now a large portion of colleagues that are not really sensitive enough to the protein manifestations of these conditions. Think arthritis, think type one diabetes, again, as an associated and so forth. The list as you know well is long.

(12:10)Dermadaricepiformis and so forth. So the first issue, the first obstacle here is the lack of awareness about the protein manifestations of celiac disease. And also about the fact that celiac disease can occur in first degree relatives on known patients at a higher rate. 10 to 20 even percent of the first degree relative to celiac patients may have celiac disease and yet they may not get tested because they have no symptoms. And typically men refuse to be tested because, well, I have no symptoms.That’s a typical men mentality. I have no symptoms. I don’t need to be tested. That’s of course it’s not the case. So there is some work still to be done to improve diagnosis rates. But as it is, as I said before, even in Italy with a large degree of awareness in the medical community and even in the public, about 60% of those who have celiac disease remain undiagnosed.

(13:19)If you want to know what the symptoms are, I think this is already know, but basically we classically distinguish, as I mentioned, gastrointestinal versus extraintestinal manifestations. Gastrointestinal are those that I briefly alluded to. So abdominal pain, diarrhea, but can also have constipation. Interestingly, 8% of the celiac patients with GI symptoms have constipation of the presenting symptoms and people don’t think of that often. So 8% of celiac patients present with constipation that don’t have diarrhea. This is due to a number of conditions affecting intestinal motility, which can be sluggish in patient with celiac disease. And then again, of course, lack of appetite in the infant also vomiting is not constant, but very common symptom. And then the extra intestine manifestations can basically occur at any district, at any organ and system. You can have osteopenia up to all the degree up to the osteoporosis in adults.

(14:25)It’s less common in children. And thankfully it’s reversible completely in children, which is not so in adults, I guess. Then you can have, again, anemia. It’s very common. Lack of other nutrients causing symptoms such as alopecia. You can have then associated arthritis. You can have a number of neurological and psychological manifestations, including seizures. Epilepsy can be due to celiac disease. It’s not very common, but it has been very well demonstrated and documented. You can certainly have ataxia and then less important manifestations such as headaches, but they can be pretty annoying. So again, there is a mixture of many extraintesia manifestations that can present and they can be presented with GI or without GI, single or in association. So the suspicion should be still be always pretty high. To make a diagnosis, things have been recently simplified by the European Society for Pediatric GI, which came up in 2012 with new diagnostic guidelines that were then refined and revised in 2020 and that currently largely utilized throughout Europe and still encounter some resistance in the United States, even by pediatrician.

(16:04)But my money is on the fact that they’re going to be more and more utilized, not only in children, but also in adults. And there are, of course, already rather papers and studies showing that even in the adult population, applying these so-called simplified criteria might actually be quite effective. So basically what happens is that we thankfully have a very sensitive and specific test, which is a serological test. So you test the levels of tissue transglutaminous to antibodies. And if they are above a certain limit, that’s highly suspicious of celiac disease because they seem to be pretty specific, although they can also be found in other conditions such as type one diabetes. Then if the patient has a very elevated levels of TTG antibodies, then you test this patient for the anti-endometrium antibodies or EMA, which are much more specific than the TTG. Their specificity is basically 100%, especially at levels above one to 40, one to 80, because it’s a dilution test.

(17:24)If you have levels below one to 40, but levels above that, 180, 260, one to 320, then the specificity is so incredibly high that these new diagnostic guidelines have proven that at that point, the diagnosis of celiac disease can be made for certain. You do not even need to do the biopsy, which for many decades had been the cornerstone of the diagnosis of celiac disease since people showed that celiac disease is characterized by villous atrophy. So the atrophy of the nice villi we all have in our small intestine. So with that, the diagnosis appears rather simple. The problem is that not every celiac patient has these levels so clearly elevated. And the TTG, instead of being 10 times above the normal, maybe two, three times above. So if they say the threshold is one to 20 and they have levels to one to 40, one to 60, what do you do?

(18:33)In general, in these cases, the anti-neomisomal antibodies tend to be negative because they need kind of, even though they are incredibly specific, they’re not as sensible. So they may be negative in patients who have celiac disease with low titers of TTG. I hope I’m not making this too complicated. In presence of the patient who has TTG two, three times more than normal, then I guess if the suspicion is high, you have to proceed with the biopsy. That is the crucial point. In my experience and in the experience of many of my pediatric colleagues, if you apply these guidelines. So the patient that present to your practice who fall into the possibility of skipping the biopsy because they have high TTG and clearly positive EMA are roughly half of the patients. So you may be able to skip the biopsy in about 50% of the patient, which is a great improvement of course.

(19:37)Again, there is resistance in applying these rules, so to speak, these guidelines in North America. Actually, I will say more in the USA. In Canada, they are more open to this. But again, I believe that they are very effective. You don’t even need to do the genetic tests beforehand. So that’s very easy. The real problem, and I don’t want to talk too much, but the real problem is patients who already come to you on a gluten-free diet because they say, “Oh, I had symptoms.” Nowadays, as you know, it’s a fat. Everybody goes gluten-free. And then there are personalities who support this. And everybody now is an influencer. If you’re not an influencer, you don’t count. You are nobody. So people influence you to think that gluten is bad for you. Forget about gluten. It’s a poison. Well, gluten is not a poison, of course. I mean, it is really for celiac patient who need to avoid it very strictly, but otherwise that’s not the case.

(20:43)But if you start to be on a gluten-free diet, and if your brain begins to think, “Oh, actually I’m much better because I am gluten-free die.” And as Jess knows very well, the role of brain is very important in this world, in this condition. Then you start to be on gluten-free die. You present to your doctor and say, “Am I celiac or not?” And so what do we do? I guess my recommendation will be if you can do first the genetic test, because a negative genetic test rules out celiac disease. You can stop there and tell your patient, “Well, you feel better on rule and free. It’s your choice. I’m not here to tell you what to put on your table for breakfast, lunch, and dinner. I’m okay with it. Just be careful not to choose manufacture the gluten-free produce, but because as you know very well, this we open in a Pandora ways of they lack fiber, they lack micronutrients and so forth and so on.

(21:49)But anyway, on the other hand, if the patient is HLA, DQ2 or DQ8 positive, then it’s hard. Then it’s hard. You have to convince this patient to undergo a gluten challenge. Gluten challenge can be done for a short time. There are studies showing that actually you don’t need to have three months or six months on gluten and condemn this patient to suffer. You can do that in a strict manner, even a few days may be enough, and then do a biopsy. But you have to be convincing. And if they are resistant to the challenge, then I guess you have to surrender at that point and say, look, once you change your mind, come back and then we’ll discuss this. But it’s hard. It’s hard. And it’s also very hard to follow the diet. But fortunately, we have people like you to help. So that’s the thing today.

(22:42)We didn’t have that a long time ago. Now it’s much better.

Jessie (22:45):
Yes, the gluten-free diet is extremely hard. Well, thank you, Dr. Guandolini. That is a fantastic overview of how to diagnose celiac disease and why it is so challenging to diagnose. And for our listeners here, if you are getting tested for IBS or getting any test done, we want to really emphasize don’t cut out food before you get testing done. Not gluten-free diet, not even the lofamet diet, because oftentimes when people go low vomit, they’re already cutting out too much gluten for the celiac test. We were just at DDW, and one of the consensus I hear from one of the very seasoned dietician at Columbia Celiac Disease Center, my dear friend, her recommendation is four servings of gluten per day. And then at DDW, there was a presenter, I can’t remember who, that talks about maybe we need to extend eating enough gluten from six to eight weeks to 10 to 12 weeks, which can be really hard.

(23:43)But if you’re getting testing done, eat four servings of gluten. It can be four pieces of bread or half a cup of pasta will be one serving of gluten. Eat four servings of gluten until you get your blood test done. And don’t stop if you get the first set of blood tests because it may not be of the celiac serology test that you need. Like what Dr. Guandolini was saying, the TTG IgA first, if that’s negative or mildly positive, then we’ll move on to EMA. So don’t decrease your gluten consumption until you’ve moved through all of the blood test and then potentially getting a biopsy. I think one of the big problem I see in clinic is if any of the tests is mildly positive or positive, patients will hear from the doctor, “Oh, you potentially have celiac, or you potentially have gluten tolerance, you cannot tolerate gluten.” And when patients hear that, they automatically cut out gluten.

(24:39)And by the time they do their biopsy, it may not be accurate anymore. So if you are listening, don’t cut food out until you’ve gotten all of the tests done. And if you are a provider listening to this podcast, make sure you let your patients know, “Hey, this is a series of tests that we are going to perform. And all of these tests rely on you eating enough gluten so that we can get an accurate test result.”

Dr. Stefano Guandolini (25:06):
Absolutely.

Jessie (25:07):
Okay. Yeah. All right. Well, now let’s move on to something very exciting. And Jess here from Australia, Australia has done so many amazing research in this area, and Jess was trained with Monash University and now at the University of Melbourne. Can you tell us about everything that you’ve done and all the events that we have in the space of non-celiac gluten sensitivity?

Associate Professor Jessica Biesiekierski (25:33):
Yeah, I can. And it is very much a evolving area and an area that has shifted in our understanding over the last 20 years and has a number of different nuances to it, some of which Dr. Guandolini has already touched on. So I think to start with perhaps just some contextual and definitions. So we’ve talked already about celiac disease, where there’s that clear gluten triggering an autoimmune disease. We should acknowledge that there is also wheat allergy, which is different again, but a really clear specific allergic immune response often where there is that reaction and symptom onset that can be quite severe very rapidly. And then we have this area of non-celiac glute sensitivity, non-celiac wheat sensitivity. There is many different terms that are being used interchangeably. I think as I continue, I will probably use NCGS or non-celiac gluten sensitivity just to contain it to one term, but I do acknowledge that they can be used to encompass other gluten reactions.

(26:41)So with NCGS, we don’t see that gut damage that you see in celiac disease. We don’t see those allergic or allergy antibodies. We don’t see any clear immune marker. Instead, what we’re seeing is the, and what we now believe is that symptoms are coming from not only how the gut is functioning, but importantly, how the gut and the brain communicate. And why the area has become quite complicated and noisy is because there is this debate around this mismatch that we’re seeing in the scientific evidence and how common gluten sensitivity is perceived to be, further complicated by the difficulties and challenges in diagnosing celiac disease. And I think it’s worthwhile also absolutely acknowledging upfront that the symptoms that people who are self-reporting to be gluten sensitive, the symptoms are very real and I want to absolutely acknowledge that. And these symptoms that people with gluten sensitivity often report vary from being very gut dominated.

(27:41)So bloating, pain, altered bowel habits, but also a lot of fatigue, brain fog, things that absolutely overlap with celiac disease as well. Versus in NCTS, that underlying mechanism is very different. When we drum down to actually trying to understand the evidence and how the evidence is evolved, and I’ll touch on a couple of landmark studies, the evidence is very mixed and it’s absolutely less about how the immune system is attacking the body and now more about how the sensitivity of the gut and the brain system and how that gut and the brain signaling and the brain is interpreting those gut signals towards certain foods or other food-related signals. Dr. Guandalini nicely really touched on how this area of food-related symptom induction is very complicated because we have so many influences, but also the media, the food industry, and many people genuinely promoting the gluten-free diet, which makes it hard for one to understand what was it in that bowl of pasta that was truly triggering their symptoms.

(28:52)And to use a bowl of pasta as an example for anybody listening, when you have a bowl of pasta, you have the pasta which contains the gluten, which is the protein component in the wheat. But that pasta also contains a carbohydrate component, which are froctans, which is one of our fermentable carbohydrates that make up the FODMAP group. There is probably also a sauce on top of the pasta that contains onion and garlic, which are more froctans. There may also be tomato, which contains salicylates and other natural containing food chemicals that we also have some evidence to show may also induce or trigger similar IBS or gut-related symptoms. And then that bowl of pasta is probably consumed alongside a glass of wine, maybe a coffee after a stressful day of work. So it’s worthwhile acknowledging that there are many factors here or combination of factors and influencing triggers that could be responsible for triggering that symptom response.

(29:53)Unfortunately, if you go to the dear Dr. Google, gluten being the dear villain is It’s often the visible thing that is then blamed. And I would like to argue in today’s conversation that it is being often incorrectly blamed because of how many different influencing factors there are. So to touch on some of the evidence and the science and where the science is currently at at the moment, last year we published a body of work in the Lancet, which really encompasses all the available evidence examining if there is gluten sensitivity outside of celiac disease at the moment. Within that paper, there’s almost 60 different studies, including many double-blind gluten challenge trials. But the consistent finding that is coming out now is that it’s quite striking that the gluten-specific reactions are uncommon and where they do exist, they are very small and often not reproducible. So this means that we are not seeing this gluten-driven or gluten-specific condition that we earlier thought two decades ago and earlier on in the piece.

(31:08)When we ask patients about what they believe and when we’re looking at the gluten-containing intervention versus a placebo containing intervention, many of these self-reported participants in these trials are reacting equally or even more strongly to the placebo. So we’re seeing this placebo response. And actually when there is a negative or a symptom induction to a placebo, we call it a placebo response, which comes back to our gut-brain signaling that we can talk about further as well. There’s a couple of other key trials that I’d like to touch on really quickly. So when these patients do, they do improve on a low FODMAP diet. Even when gluten is reintroduced, we see that symptom response is still really low when they are on a low FODMAP diet. We also have a landmark trial from Norway that showed fructans caused more bloating than gluten itself. So it brings us back to that pasta bowl that fructans in the wheat are hiding behind the gluten label.

(32:09)And more recently, a really clear and striking feature that is coming out now is this understanding of expectation. So in these blinded trials, when people don’t know whether they’re eating gluten or placebo, the symptom differences almost vanish. This is what we are seeing here is that the brain is genuinely amplifying when the gut signals that it’s predicting harm and the placebo response and the underlying physiology behind this is measurable, that the symptoms are real. So we now propose that the reframing NCGS or gluten sensitivity as part of the gut-brain interaction and being much closer to IBS than celiac disease.

Jessie (32:54):
Dr. Guandolini, did you have something you wanted to add?

Dr. Stefano Guandolini (32:57):
No, I agree completely with Jess. Of course, newer papers and they did findings. Also other groups, I remember a study a couple years ago again in Denmark, if I’m not mistaken. Also, Stephan Osby and Joe Maury participated in the young adults showing once again that once they were selected because they thought they had symptoms caused by gluten and then they were put gluten-free. Finally, they went into the placebo and gluten challenge. Their reactions were exactly the same whether they were on placebo or placebo. So the expectancy of what’s going to happen plays a major role. I just want to quote the title I gave to the. I was requested to do a presentation a couple of years ago on this issue, non-citac gluten sensitivity. And my title I’m reading there, it was gluten sensitivity. Surely a sensitive, but perhaps not a gluten subject. Because in reality, this is a sensitive subject.

(34:06)There are strong opinions. People would almost kill to support the existence of this condition and the role of gluten, and people are very skeptical about both. But I guess we have to proceed with evidence-based criteria as Jess very properly said. We are learning more and more about this condition, but clearly the role of gluten per se, look, if we did not know about celiac disease, we would not have given the name of gluten sensitive with non-celiac gluten sensitivity. It’s just because we knew the role of gluten in celiac that we melioha, that’s what it is. It’s gluten again. Well, may not be gluten at all. May not be gluten at all. Again, many studies seems to be shedding this, let alone the role of possibly beyond fructus, which Jess and others have shown do have a role in this condition. But people don’t know about ATI.

(35:09)These proteins are common to a vast number of cereals and they seem to trigger some innate immune reaction. Are they responsible for non-silic wheat sensitivity? We don’t know really. There is no known.

(35:29)So much one can say, but a few things more from my perspective. First of all, again, I think non-silica gluten sensitivity is a misnomer for all the reasons that were said during this webinar or seminar. In reality, the role of gluten is less than well documented. While that of wheat is actually more acceptable, so I would probably recommend using every time the term non-silica wheat sensitivity rather than gluten sensitivity, and that is a better scientific term. Even the word sensitivity, I don’t want to appear too pedantic here, but sensitivity seems to suggest an immune reaction, which nobody has shown. So probably a less committing term such as intolerance would be more appropriate. This is a syndrome. It’s not a condition. As I am convinced, the term is like an umbrella term. There certainly are people who are sensitive to fructus. There certainly are a large number of people in which the placebo nocebo effect, so well explained by Jess with the role of brain is playing a role.

(36:49)There possibly are a few people who are truly reactive to gluten or to ATI, and therefore there is a commission of things. So this is a syndrome. We should call it wheat intolerance syndrome rather than not silica gluten sensitive. That’s my plea. The other thing that I want to say in concluding my part is that we really are uncertain about the presence of this condition in children. I looked at this from my experience. I looked at this from PubMed many times, including today to be sure I was not missing anything, including today. And I must confirm that I am absolutely not convinced that this entity exists in children. A couple of papers I strongly object. I mean, the paper that is most commonly quoted for this is by another very astute, very good and very respectable and respected adult GI Italian physician, Gujero Francavilla, who published in 2018 a study documenting in his words the presence of non-celiac gluten sensitive.

(38:09)Even then, he had to say, because they started with 1,400 children recruited initially. Then as the work progressed, many were excluded for a reason or another. And then those who believed to be sensitive to gluten were finally enrolled. They went through a placebo, I mean placebo and gluten rather exposure. This was done in a rigorous matter in a multicenter fashion, double-blinded. And they concluded that there were four subjects. Remember, they started with 1400, but at the end, they documented four children who clearly had a visual anago score, high response to gluten and very low to the placebo. And they conclude that this shows that they have this condition. I’m not convinced. I’m not convinced. If you look at the paper, there are also four children exactly by chance the same number that responded with a very high visual anago score negative response to placebo and had absolutely zero response to gluten.

(39:19)So what do we do? I think they canceled each other. Just by chance it happens that these children responded to gluten just as the others responded to placebo. And in fact, we wrote with Dr. Gibson and Dr. Lunding, we wrote a letter to the American Journal of Gastroenterology saying, “Yeah, I’m not convinced.” But beyond this and besides this, I stopped working a couple of years ago, but still I have many decades of work on my shoulders. And I’ve never seen convincingly a child, I’m talking about children being a pediatrician, who has non-celiac gluten or wheat sensitivity. So I’m not saying it doesn’t exist because I don’t want to be narrow in my judgmental opinions, but I express strongly my opinion that so far no one has convincingly demonstrated the existence of wheat intolerance syndrome in children. And that’s my final take on this.

Jessie (40:34):
Yeah. Well, thank you. I’m going to share what I see in clinic afterwards, but Jess, please go on. Yeah.

Associate Professor Jessica Biesiekierski (40:41):
Yeah. We’ve talked a little bit about the imagery of that bowl of pasta. And we’ve talked about fructans versus gluten and really what is in wheat. But I think it’s also worthwhile stepping back and thinking why do so many people say they feel better when they cut out gluten? Because when people are removing gluten, they’re often changing much more than just gluten containing or wheat containing foods. We have acknowledged the FODMAPs and the role of fermentable carbohydrates where there is that large overlap of fructan and gluten-containing foods. But they’re also often when you are removing wheat and gluten-containing foods, you are also cutting back on things like ultra processed foods. You become more careful in the way that you eat. And often that also leads to a feeling of being more in control of your symptoms. And all of those changes can also genuinely improve gut symptoms, especially in people that have a sensitive digestion or IBS.

(41:46)And on top of that, feeling reassured that you’ve removed a potential problem food can also help calm that gut brain system and reduce symptoms. So I think the broader terminology of what we’re using indeed intolerance, but I would also fit it within IBS or DGBI in a broader sense because I think that benefit is usually coming from a broader dietary and psychological change rather than that removal of gluten or wheat-containing foods itself. Yeah, I just wanted to add that.

Jessie (42:24):
No, that’s really helpful. And I think to add on to what you were saying is patients, a lot of the times that’s what we see too, patients cut out all the foods by themselves. They go dairy-free, that’s usually the first one to go, and then they go gluten-free. And then somewhere on the internet or from their doctors, they hear about the lymphoma diets. There’s one big group that they’re removing and their symptoms still persist. And it is very complicated when we are talking about what is actually causing symptoms. Is it the gluten in the food? Is it font maps in the food? Or is it maybe there’s just too much acid in the tomato sauce or the alcohol triggering symptoms? Or could it be too much fat from the diet? These all can contribute to symptoms.

Dr. Stefano Guandolini (43:12):
Is a free conversation at this point, which I am enjoying very much. I was just thinking homo sapiens has been around for what? 300,000 years, right? Now for the first 290,000 of these 300,000 years, we have not been eating anything that agricultural evolution afterwards brought us. We were not drinking milk because we did not domesticate cows or sheeps or goats. We did not eat gluten or wheat because we did not domesticate wheat. We ate basically berries, fruits, meats, fish, vegetables. And so our species adapted to a diet which we encountered and used for hundreds or thousands of years. Then all of a sudden, new antigens come around. Here you have, as we said, milk, here you have wheat, here you have eggs, here you have all these things that can be causing not people adapted. People developed reactions to this food. Think about milk.

(44:28)The human being is the only species, the living species on this planet that drinks the product of a mammary gland of another species. This is insane. Yet everybody thinks, “Oh, you have to drink milk. It’s very healthy for calcium.” Yeah, it’s very healthy. The cows produce milk. What do the cows eat? Do they eat milk? Do they eat parmigiano or edgiano or butter? No, they eat grass yet. They are healthy and they produce calcium. So I’m trying to debunk some myths here and bring back to the philosophical vision that all these new antigens, food antigen that we introduce are basically our fault because we diverged from a natural diet. That said, I’m going to eat my pasta tonight for sure.

Jessie (45:20):
And please keep drinking your milk because we know osteoporosis is a huge problem, especially for women going through menopause. We want to do strength training. We want to make sure we have better calcium intake. So I think that maybe on a public health standpoint where we are trying to really enrich our food to make sure people are not being deficient. But let’s come back to people cutting out foods. I think people who are blindly cutting out foods, but don’t know how to challenge each of these food groups because differentiating gluten intolerance versus fructan intolerance is not that hard. But what is very difficult is the placebo and the nocebo effects. That’s not something you can replicate in an outpatient clinical setting. That’s something you might be able to do on a very small sample size. Jess, do you know that placebo-nocebo research paper, how many participants were in that one research?

Associate Professor Jessica Biesiekierski (46:15):
Yeah. So what we have done is being able to look at within those gluten-blinded trials, how many people actually responding to the placebo arm and then have reframed that in a nlacebo response percentage. And it’s around 40%. So it’s quite high.

How many participants do you know? How big was nocebo?

Associate Professor Jessica Biesiekierski (46:35):
When you collate all of those, it’s thousands and thousands of participants across almost 20 double-blind randomized control trials in this space now. Jessie (46:44):
Okay. Yeah. Oh, that’s Associate Professor Jessica Biesiekierski (46:46):
Great.

(46:47)And I think although yes, it is difficult to then think about how you can do that in a clinic sense, look at a nlacebo response and be able to test it. Rather, I would say it’s about how you can then talk to the patient and be able to explain what the nocebo effect is and explain that the nocebo effect is a true physiological process. It’s not imagined symptoms. This involves measurable changes in the nervous system activity, pain processing, gut function has been well known and well researched about for a long time in the psychological field. And I think explaining to the patients about visceral hypersensitivity and heightened gut sensitivity and what is happening and underlying those processes and underlying expectation, prior experience with food, and how that relates to altered gut brain signaling. So it can be as simple as saying your visceral sensitivity, how strongly your guts nerves are reporting sensations to the brain, and your gut-brain signaling how your brain is interpreting those reports.

(47:58)And what underlies those is when the brain is expecting danger, those gut signals are amplified and that can then turn normal digestion into pain, urgency, or discomfort. So it may be then highlighting other disciplines to be involved in that care model where we bring in a psychologist.

Jessie (48:20):
Yeah, absolutely. Absolutely. And I want to share what I see in clinic as well, which I’ve talked to Jess and also shared with Dr. Bandolini. So we work with primarily IBS patients who have not found any symptom relief despite trying everything. Usually by the time they come to us, they’ve already cut out all of the food that they’re eating. So what we usually do is to really stabilize their symptoms depending on what subtype of IBS they have. Strategies might be a little bit different. For the listeners, we’ve got episodes that talks about constipation. We’ve got episode that talks about bloating. We’ve got episode that talks about diarrhea. So go back to the early episodes to learn more about that, but stabilizing symptoms first and then doing food challenges one at a time to see what people can and cannot tolerate. Now, what we have seen is that a lot of the times patients would have trialed, for example, the gluten-free diet in the past or have been staying on the low format diet for prolonged period.

(49:18)I think the people that come to us have really stayed on the low format diet for a long time and they’re cutting out more and more food because we are really encompassing a huge group of food here. It’s not just gluten, it’s everything and a lot of fruits and vegetables and their guts becoming more sensitive. And when we reintroduce fat maps, usually if we do resolve whatever is causing their symptoms in constipation, then it’s really gut motility issue. And like what you’re saying, sometimes we do bring in or refer out to psychologists if they’re very anxious or if they need help with that gut-brain connection because IBS patients or celiac disease patients, that heightened gut sensitivity can be very debilitating for a lot of them. But we do have to really resolve whatever is going on before challenging the FOTMAPs. Otherwise, likely they’re not more likely than not, they can’t tolerate a lot of it.

(50:13)Now there is a subsets that I see where when we do FODMAP challenges, they can tolerate fructin with no problem, with the exception of gluten-containing foods. And now we usually recommend gluten-containing foods that are low for map too, so that we can tease out, is it a fructin problem or is it a gluten problem? And there is a subset that we see when they do eat gluten-containing food, they have a reaction. Sometimes their reaction lasts longer term and we see symptoms lasting for two to four weeks. Now, the hardest thing for us to differentiate as dieticians is that we don’t know if this is celiac disease or non-celiac wheat sensitivity. And like what Dr. Guandolini suggests, we always recommend genetic testing if possible. So if you are a clinician listening to this, this can be another tool to help your patients. Maybe not getting a celiac diagnosis, but understanding the risk of potential celiac disease in a patient who might be not able to eat gluten or have symptoms when they eat gluten.

(51:25)But I think having a way to test food separately and having somebody to guide the patient to do that instead of having patients cutting out all the foods is really, really important. And that goes the same for all dieticians or doctors out there. Don’t just put patients on a diet. Have them challenge the food, especially if it’s GI patients. But we do see subsets that don’t tolerate gluten. We don’t know if they have celiac or not. In some of the cases that we see, they have the celiac genes, their DQ2 and DQ8 gene. In some of the patients we see, they don’t have the genes. And I know I talked to the Celiac Disease Foundation at DDW, they are adding on a new gene into the genetic recommendations next year. So I’m wondering, are we missing part of the gene? I think what they were saying is the DQ7 gene is more prevalent in the South American population, and that’s not being tested currently in the US.

(52:28)I don’t know what it is like in Australia, but it’s not being tested in the US rights now. And they are thinking of including that into the recommendation next year.

Dr. Stefano Guandolini (52:38):
Yeah.

Jessie (52:38):
And Jess, did you want to talk about the research that you are doing and you’re trying to recruit American-based Australian and American-based IBS patients, right?

Associate Professor Jessica Biesiekierski (52:51):
Yeah, thank you. So acknowledging particularly the discussion around the gut-brain framing to formally test that my team is now leading a international trial where we are putting two opposite IBS treatments head-to-head. So we’re looking at the low FODMAP diet, which I believe many of your listeners will know well about. So removing those fermentable trigger foods and then exposure-based cognitive behavioral therapy, which takes effectively the opposite approach, gradually reintroducing those foods while retraining how the brain is responding to those gut symptoms. And the trial, we’re looking for people with IBS all across America or Australia. And the aim of the trial is to try and match the right patient to the right treatment right from the start. So to be able to understand what works for whom and why. And if you have IBS, you’re listening, please visit www.gutresearchstudy.com to find out more information to see if you are eligible.

(54:00)You’ll be randomized to either arm. You’ll receive individualized one-on-one advice from either a dietician or a psychologist and receive free treatment fully online for 12 weeks.

Jessie (54:13): So if you’re listening. On that note, I also want to say something because we know there is an overlap between IBS and celiac disease diagnosis. Oftentimes, patients with celiac disease is diagnosed with IBS first. Me and my colleague at University of Washington, Kendrick Camp, we are hoping to do research on IBS patients to see the initial research. We don’t fully have a plan yet, but we are hoping to look at the genetic compositions of IBS patients to see what is the percentage of IBS patients potentially have the celiac disease gene. I think that’s our initial step. And then maybe for future research, we can look into even anemia. Do people have iron deficiency anemia? Could it be, is it IBS or is it something else? Because we know IBS do not cause nutrient deficiencies, whereas other GI conditions do and what population of IBS patients may have these issues.
(55:10)So more to come. I’ll send out emails, but if you are ready to help research rights now, go to, can you say that website one more time?

Associate Professor Jessica Biesiekierski (55:20):
Yes. Www.gutresearchstudy.com.

Jessie (55:25):
Yes. And we’ll include it in the show notes as well.

Associate Professor Jessica Biesiekierski (55:28):
Thank you.

Jessie (55:29):
Well, thank you both for joining me. Do we have any last words or words of encouragement for patients who are currently dealing with gut symptoms and are really struggling?

Dr. Stefano Guandolini (55:39):
Thank you for having us. It was fun. I enjoyed it. Sorry, turn up to you.

Associate Professor Jessica Biesiekierski (55:44):
Yeah, thank you, Jessie, very much for having both of us. A fantastic and really important conversation. I do hope anybody listening feels validated. Your symptoms are real. It is a challenging space. And I really look forward to the research and the clinical care really moving towards a shift of personalized gut-brain-focused care. And yeah, with conversations like this, it helps us get there. So thank you.

Jessie (56:11):
Well, thank you both of you. Well, thank you, Jess, for all the research work that you do. And thank you, Dr. Guandolini. You are bringing in research and a lot of real-world experience working with patients. I think one of the things we talked about earlier before we started the podcast recording is that there are times when patients decide to put themself on the gluten-free diet, and that is always an option that when patients realize they cannot eat gluten moving forward. There is so many layers of grief that people go through, and it is a very challenging diet for a lot of patients to navigate because gluten is in everything. And it is very hard. And like what Jess is saying, your symptoms are real.

(56:59)It’s not made up, and we are going to learn more about it and find ways to better help you. Right. Thank you both. 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 the 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.

(00:54)Today we are taking a highly clinical yet very incredible validating look at what’s actually causing your IBS. For decades, patients have been told by doctors that their scopes look totally normal, leaving them to feel like their pain is just all in their head, but modern science have completely shifted the narrative. IBS is now officially classified as a disorder of the gut brain interaction, DGBI. So to help us understand the science behind, we have Dr. Megan Riehl to the show. Welcome, Dr. Megan Riehl. Thank you so much for being here.

Dr. Riehl (01:34):
Jesse, it’s a pleasure to join you again. Thank you so much for having me.

Jessie (01:38):
Dr. Riehl is an internationally recognized GI psychologist, associate professor of medicine and the director of the GI Behavioral Health Program at the University of Michigan. She specializes in gut brain behavioral therapies and is fiercely dedicated to delivering compassionate practical care for DGBI. She is also the co-author of the fantastic book, Mind Your Gut, and the co-host of the Gut Health Podcast. I have to say the book, Mind Your Gut is something everybody needs, especially for those with IBS. Read it on better understand the condition and it’s also packed with tools to help you better manage your condition. Dr. Riehl, again, so thrilled to have you and for our listeners today, we have three major topics on the agenda. Topic number one, we are diving into the science of DGBIs and the gut-brain axis. Number two, we’re going to unpack the vasovagal reaction, the terrifying dizzy or sweating feeling on the toilet and what it means for IBS patients.

(02:46)And number three, Dr. Rio is going to give us three highly actionable, evidence-based tools to help you calm your nervous system and find relief. Now, let’s dive right into our first topic, the first one. What is DGBIs?

Dr. Riehl (03:05):
Yeah. So we think about DGBI as more of this modern medical term and it moved from functional gastrointestinal disorders into this era of DGBI. And really this wasn’t too long ago in terms of time. Really, five to 10 years ago is when we started to make this shift. And things like irritable bowel syndrome and some of our other functional conditions didn’t really feel functional for patients. And so literally the nomenclature of how we were describing these very complex, difficult to manage, frustrating conditions, patients really literally were like, “I do not feel very functional,” and there was really a big disconnect here. And so when we start to bring in the brain, I think there can also be a little bit of worry there because many patients that have been living with functional gastrointestinal disorders, now known as disorders of gut brain interaction, have had that experience of having a complete workup of their medical symptoms, being told, “Hey, everything looks great. You’re doing fine. Just keep taking your medication, come back and see me if something gets worse and good luck to you. “That almost is not even on the bad side of the spectrum. The really horrible experiences come when a patient is told, “This is just in your head, go ahead and go live with this. ” So when we bring in the brain into how we describe these conditions, I think that what we really are doing is highlighting the true reality of how these conditions are driven in the body and that’s through our brain gut connection, which is a very real phenomenon and a situation where our brain is constantly assessing what’s going on in the gut and the gut is sending signals up to the brain and so we call it a bidirectional communication pathway. So this is how we kind of came to rename these same conditions.

(05:20)So IBS is the most well known in the disorders of gut-brain interaction, but really just this shift from better identifying and helping patients and the field to recognize that this is a condition where the digestive system and the nervous system are not communicating and regulating the way we want them to. And even though things may look normal, and I’m putting that in quotes, we really have to get into how the brain and gut interact in order to help you manage those conditions.

Jessie (05:56):
Yeah, absolutely. Now some of the symptoms patients feel, right? Let’s move on to point number two. What are some of the symptoms that patients view that stems from the gut brain interaction?

Dr. Riehl (06:09):
Yeah. These are common ones that even people without a disorder of gut brain interaction can experience subdominal pain, cramping, bloating, diarrhea, constipation, urgency, belching. Sometimes you can get a chest or even a throat discomfort, feeling fu more easily or quickly after meals. Those are some of our very common symptoms. And then how those present really in terms of severity, frequency, duration helps us then classify some of the diagnoses within that group of disorders of gut-brain interaction.

Jessie (06:48):
Right, absolutely. Now, what is vasovagal reaction?

Dr. Riehl (06:54):
So this is also something that a lot of people have probably experienced. And I think sometimes when we think about IBS, as you mentioned at the top of the podcast here, you can get that sweaty, clammy feeling, but really some of the symptoms that people are prone to with this response is heightened nervous system sensitivity. Say that 15 times fast or five times fast, heightened nervous system sensitivity. And this is really where our body’s autonomic nervous system is responding in a way where we feel our heart rate increase. Our blood pressure becomes a bit dysregulated and that can trigger some of our pain symptoms like that cramping. You might get sweaty, you might feel a little faint, you might feel really nauseous or dizzy and patients that are living with IBS can experience this in kind of the midst of a flare up of their GI symptoms.

(07:58)I have some patients that will feel this kind of vasovagal response just before having more urgency or a bout of diarrhea. Some patients where they’ve had those bouts of diarrhea, those more severe symptoms, and then after the fact they feel some of these symptoms. So it’s really your nervous system, specifically your autonomic nervous system revving up and really making the whole situation a bit worse.

Jessie (08:32):
Can we explain a little bit more about what is our autonomic nervous system? What do they do? How are they regulated so our audience can better understand this?

Dr. Riehl (08:42):
Yeah. This is a really important concept, especially for those that might be living with a DGBI because this is really where the heart of our brain gut behavioral therapies can target. So our autonomic nervous system is made up of your parasympathetic system and your sympathetic system. And the sympathetic system is thought to kind of, you can think about it as your fight, flight or freeze response. It’s going to kind of go on guard to keep your body safe. And our parasympathetic system is also known as our body’s relaxation response or the rest and digest state. So our goal is to kind of keep us moving toward that parasympathetic state, specifically when we’re at baseline and we’re just going about our day. And so this is what the autonomic nervous system regulates. Its job is to kind of tell the body where to be focused. And in a lot of patients that are living with IBS or DGBIs, our sympathetic system begins to dysregulate in situations where it really doesn’t need to.

(09:54)So in a way, it’s interpreting situations with threat that it perceives as a threat and then responding, which then kicks up the symptoms that happen when our sympathetic system is ramping. And that can be your heart rate is racing, your breathing gets short shallow, your muscles clench, tense and tighten. And those are all kind of bodily responses that are not very conducive to GI symptoms because it also is going to make cortisol surge through your system and it can really impact the stress hormones that are going through your body. And so that can further perpetuate some of these GI symptoms of feeling faint or feeling more severe nausea, having that cramping and spasming kick up so that your urgency worsens. And when you can understand some of the mechanisms of which your body is and your brain, because this is really being driven by your brain gut connection.

(11:02)And so when we can understand this and help you identify that, yes, these are real symptoms that are happening, that your brain is a part of this picture, but also the interpretations that the brain is making about the sensations that are happening in your body we can shift into when we have some of these symptoms, how might we respond a bit differently to help activate our parasympathetic system, which is our relaxation response, as I said, and different things like diaphragmatic breathing or muscle relaxation. I’ll get into those tips in a little bit. Those are beautiful ways that you can more quickly activate your relaxation response to help calm some of these uncomfortable physical sensations.

Jessie (11:49):
I love that. Now for patients who are listening, when is a good time for them to maybe start thinking about this or start thinking about working with a psychologist or a therapist who specializes in GI disorder?

Dr. Riehl (12:02):
Yeah, it’s a great question because it is important to highlight that the majority of GI psychologists, our job is to kind of jump right in there. We’re going to be working on skills and strategies to help you better understand your condition, how to implement our brain gut behavioral therapies to address your physical symptoms and some of the GI specific anxiety that can go along with that using what are called brain gut behavioral therapies. And so our work is a bit different from a general mental health provider who for Lord knows none of us are short on stress these days and our mental health is so very important. And so you would want to prioritize if you’re experiencing anxiety, depression, trauma that is not so related to your GI condition, we want to prioritize your mental healthcare with somebody who really can kind of work with you to stabilize those mood and anxiety and trauma symptoms.

(13:02)But if you’re somebody who, as I’m talking today, you’re kind of going, “Yeah, before a trip, I always get increased bloating and urgency and diarrhea. While I’m traveling, I get more constipated. I have bloating and gas. I’m always afraid of what I’m going to eat or how that trip is going to go or man, my work stress every time that kicks up my GI symptoms worsen.” Man, I really am a stress responder and when I feel my stress, I feel it in my gut and my GI symptoms are worse. Those are really patients that we can do some remarkable work with in a pretty short amount of time with our evidence-based therapies and we can really help you. I always say our goal is that I’ll never completely cure IBS.That’s not a possibility and anybody that promises that out there is selling you snake oil.

(13:55)But what we can do is improve your confidence to manage IBS and we can also reduce the severity, the frequency and the intensity of your flareups and hopefully go longer and longer periods of time without a bout of these symptoms. But the key is that if you do have a flareup of symptoms, you’ve got a really good toolbox of strategies and you know what to do, you know what’s happening and you know how to calm it down and that makes living with some of these conditions much more bearable. And in fact, you can live a very full, wonderful life where you travel, you manage your stress and you can have all the relationships and beauty of the world.

Jessie (14:40):
Yeah, I love that. So for anybody listening, this is a really key option or key team member to help you manage your IBS. And we often say when it comes to managing IBS, you need a team of providers behind you, PCP, GI provider, GI psychologist, GI dietician, and oftentimes a pelvic floor therapist if needed.

Dr. Riehl (15:01):
Yes. We need a team. The dream team.

Jessie (15:06):
Yes, a dream team. All right. Well, now let’s move on to the next topic, which is three actionable tools to help patients find relief. I’m sure everybody is eager to learn what tools they can use today to find some relief with their gut symptoms.

Dr. Riehl (15:21):
Yes. Well, I wouldn’t be able to talk about this topic and tips without mentioning diaphragmatic breathing. It is a strategy that I teach pretty much every patient that comes before me and I mentioned it in talks and to my colleagues. So me and diaphragmatic breathing go way back. And this is a simple strategy of learning how to slow your breath and deepen it down into the belly. The way I teach it is about a four second inhale through the nose and your goal is to learn how to help that belly rise and then a six second exhale through the mouth so that the belly falls naturally and gently. And this is going to activate and move your diaphragm. And the beauty about this is a lot of people have learned it maybe with a mental health provider as a stress or anxiety management strategy. But when you’re actively doing this type of breathing, it can calm and soothe and even massage the intestinal organs in a way that we don’t get with our normal breathing.

(16:24)So this is one of those strategies that’s going to activate that relaxation response for you, activating your parasympathetic system. And that is a really important thing to have in your back pocket. If you have some cramping or urgency and you have that, oh crap moment, where is the bathroom? When you can learn to shift into, oh crap, okay, let me start breathing, as opposed to, oh crap, like, oh my God, my god, oh my God, I got to get to the bathroom. I’m going to make it. I’m going to have an accident. It’s going to be the worst thing in my life. That’s just ramping that sympathetic system up. Our breathing is going to activate our parasympathetic system. So I have a YouTube brief about four minute clip that if you just Google my name with diaphragmatic breathing, you’ll find it and people have found it really helpful in terms of just learning the strategy. So that would be tip number one.

Jessie (17:15):
Okay. I love that you have a YouTube video and it does take practice for somebody who have never really done it before, it does take practice.

Dr. Riehl (17:22):
It does. And so give yourself some grace and space to practice this. I actually prescribe it to my patients to kind of get them comfortable building the habit. So the prescription is usually practicing for just two minutes, three times a day and anchoring it to things that you’re already doing. So eat breakfast and then do a little diaphragmatic breathing. Have lunch, do a little diaphragmatic breathing, get into bed at night, do a little diaphragmatic breathing. And before you know it, it feels a lot more comfortable because you’re learning a new skill.

Jessie (17:56):
Yeah, absolutely. I love that. Okay. What is our second tool here to help calm that gut bring access?

Dr. Riehl (18:02):
So another one is, again, just a simple strategy of body scanning. A lot of times, especially these days, we still are doing a lot of Zoom meetings, we’re doing a lot of sitting, we’re doing a lot of computer work. And so even in this sitting position in front of a screen, our body kind of just the tension builds and before we know it, we’re sitting here for hours on end and holding tension in our body. And so I will have people put a little sticky note right on their computer screen with some kind of a reminder. For me, for years, my sticky note was just an up arrow and that my eye would catch it and I would just sit up straighter. I would pull my shoulders back and down. I would release any stress and tension in my jaw, wiggle my fingers around a little bit, but that really like sitting up straight, pulling your chest back, pulling the shoulders down a little bit, you really just very quickly notice, oh my gosh, I wasn’t even thinking I was tense.

(19:04)I wasn’t thinking I was stressed, but now my breath, I can get a deeper breath. I can kind of also feel a little bit of energy come into my system as I kind of work to release some of the stress and tension. So again, a body scan does not have to be you sit down for a 20 minute meditation. I like to kind of encourage you to pick three places in your body where you know you hold tension and for a lot of people it’s that those shoulders, neck, upper back, jaw, hands. And so it could be a simple like open up your hands, move the fingers, come up to the shoulders, open the shoulders and the chest and then kind of think about your hips sinking back into your chair wiggling around so that you loosen the lower back as well and that’s it.

(19:55)And if you can get into the habit of kind of doing a body scan a few times a day, again, you’re activating your relaxation response. You’re telling your body that when you’re sitting at your desk, there’s no need to sit here uncomfortably tense because that’s another thing that a lot of people will kind of have an aha moment with is we get just comfortable being uncomfortable. I say that sometimes with my patients and their pants that how often are you sitting in tight pants for hours and hours and hours and the why? Why? If you’re sitting at your desk at work, now granted, don’t sit there pants free, but we have bodies that can kind of expand and contract based on what we’ve eaten and what’s going on in our day. And so making us comfortable is really all a part of the second tip.

Jessie (20:48):
Yeah. I love that. And I just did a little bit of… I followed what you were saying and doing it. I thought, oh my goodness, I was tense. And I think a lot of the times we hear from our patients too with IBS especially is that they’re very tense in the abdomen area.

Dr. Riehl (21:03):
Of course.

Jessie (21:04):
And that is one area we usually recommend doing a belly massage. If they notice that tense, maybe doing the body scan and then doing the shoulders and maybe massaging your belly if that’s where you hold a lot of tension at. I love that. What a great tip. I’m going to put an arrow on my computer as well to remind myself.

Dr. Riehl (21:22):
Yeah. And I think I would have patients back in the day when I used to have patients come into my office where they would see my up arrow and they’re like, “Doctor, what is that? ” And I would then explain, “Hey, you’re going to get this tip as well, and I do my best to practice what I preach.”

Jessie (21:42):
That’s the hard part when we have a very busy day is hard, but having that visual sign, right? Visual reminder really helps us to do it and it doesn’t take long. That’s the amazing thing about the tips you are giving. It takes maybe two minutes to do deep breathing and maybe take a minute or 30 seconds to scan your body and then shake things up a little bit. Well, and now let’s move on to our third tip. What is the last thing you would recommend for patients to do right away?

Dr. Riehl (22:08):
Yeah, movement and being really, really gentle with yourself and trying your best to let go of an all or nothing mentality with this. So I have three little kids and my relationship with exercise has been different for the last decade. When I was kid free, I guarantee I was getting that 150 minutes plus of moderate to significant exercise. I wouldn’t miss my exercise. It was a big mood booster for me and also just really important. Well, as I’ve aged and I’ve had kids, sometimes it’s I get on my Peloton still in my work clothes with really the intention, I’m going to sit here for 10 minutes and just pedal my legs and that’s going to be good enough. And so I really think that people are, you can get in your head about what your routine has to… I have to exercise every other day or I’m going to do it every day.

(23:09)And as the hours tick by in the day and you’re like, “I don’t know when I’m going to fit this in. ” Even if it’s a 10 minute walk at the end of the day, it’s still moving your body or there are times where I might get a good decent lunch hour and I’ll just run out to our parking lot and walk just for fresh air and feel the sun and get my body moving even if it’s 10, 15 minutes. So that can be really good for our gut, but also tremendously beneficial for our brain health and boosting our mood. I think it’s something that you can do as a family or with loved ones too. So it’s just one of those things where if my daughter wants to go for a bike ride, it’s not going to be like a strenuous exercise activity for me.

(23:58)I know that because the bike veers off and the training wheels fall off and somebody is looking at a bug, but it’s moving our body together as a family and that I think also helps to set some healthy values around just our whole body health that we’re aiming for and it’s not going to be perfect, but it’s got to be practical.

Jessie (24:22):
I love that. Right. It’s not I have to do 30 minutes of exercise, but maybe how can I add in five to 10 minutes here and there through the day? That makes me feel better and I can let go of being perfect about what I’m doing. Oh my goodness. These are amazing tips. Thank you so much. Now let’s move on to our five rapid firing questions. First one.You ready?

Dr. Riehl (24:49):
I’m Ready.

Jessie (24:50):
What is your go – to chaotic weeknight dinner when you have no energy to cook?

Dr. Riehl (24:56):
Okay. Let’s see. I would say so Costco has these, I think it’s Tyson chicken nuggets, frozen chicken nuggets and I’m not a processed meat kind of gal, but they’re actually pretty good. So we do them in the air fryer and again, I keep it so simple. I always have frozen veggies in the freezer and rice packets are another microwaveable rice packets. And so sometimes we’ll get a little creative and like mix it all up, maybe do a fried rice situation. But if I’m really truly honest, it’s like they’re getting chicken nuggets on the plate, but with some veggies and a starch and I’m letting any mom guilt go with that.

Jessie (25:43):
Well, your kids are fed and they are happy.

Dr. Riehl (25:46):
That’s right. That’s right. That’s what matters.

Jessie (25:47):
Yes. I would add maybe a fruit to that, then it’s perfect.

Dr. Riehl (25:52):
Yes. And thank you for the dietician always pointing that out. My kids are nine, seven, and four. And also that’s another life stage where I could prepare the most wonderful, nutritious meal in the world and somebody’s going to love it, somebody’s not going to eat it, somebody’s going to want it later, somebody’s going to eat it for… And so we put dinner on the table and I try to put it on as early as possible, like as close to after school as possible, but depending on schedules, just who knows? But once they want to eat again, which may be five minutes later or an hour, fruits and vegetables are the choice. So that’s usually where they’re getting extra fruits and vegetables and that’s their before bedtime kind of routine.

Jessie (26:42):
I love that. I get it. You’re such a super mom with three kids, busy

Dr. Riehl (26:48):
Work. Well, I’m not going to lie. There’s probably fruit by the foots in there and there’s other stuff, but we do. We always have lots of fruits and vegetables around and they’re all of the age where they can kind of cut it up. And my daughter knows she’s not allowed to use a very sharp knife. So watching her cut an apple with a butter knife as she figures it out. But yeah, they’re gravitating toward the good stuff too. And I just did the thing I try not to do, which is good versus bad and using more of that language of like, this is really healthy for our bodies as opposed to like, you can never have fruit by the foot. We do, but it’s available, but quite honestly, they’ll choose the other stuff as well.

Jessie (27:38):
Well, it’s okay to choose, right? It’s about the balance and eating more rainbow. Yeah, I love that. Okay. Well, second question. Are you a coffee or tea person to start a busy clinic day?

Dr. Riehl (27:50):
Coffee. Coffee all the way. I love coffee.

Jessie (27:54):
I know I just had a friend on the podcast and she said, “I’m a mean person without my coffee and I agree a hundred percent. All right. Next one, sweet or savory when you want something comforting.

Dr. Riehl (28:07):
Sweet.

Jessie (28:09):
Okay. All right. Will, what is one wellness trend or diet trend that you wish would dissapear from social media forever?

Dr. Riehl (28:18):
I just wish those that didn’t have the degree or the education would just disappear and stop muddying the waters for people that are just trying to feel better. So I think that really relying on people that have science-based appropriate qualifications, that’s who we really want to focus our attention on for some help and support.

Jessie (28:44):
I think that is so important for our listeners to hear. When you are hearing a message on social media, go take a look at the person’s profile. Can you figure out if this person has any actual real certifications or licensure, not just something made up. And if somebody says that they’re a doctor but there’s no way to figure out what type of doctor they are, chances are they’re not a real doctor. Yeah. So be careful. There is so much misinformation on the internet. Okay. Last but not least, what is your personal favorite 60-second trick to come your own nervous system?

Dr. Riehl (29:22):
In 60 seconds, self-talk and deep breathing. I am okay. I’m going to be able to make it through this. I can get through hard stuff and just starting to kind of feel my body do that body scan deepen my breath. It’s a superpower to be able to recognize that your body is responding to whatever stressor is in front of you and know that if you intentionally release the stress and tension from the limbs and the body and you use your cognitions to help you move Through that period of time, it will pass quicker.

Jessie (30:04):
I love that. Well, Dr. Riehl, thank you so much for joining us and especially thank you for sharing all of these tips that can really help IBS patients and anybody who is struggling with GI symptoms.

Dr. Riehl (30:17):
Yes. Thanks for having me. Always happy to talk about it.

Jessie (30:21):
Yes. And for those of you listening again, you can find Dr. Megan Rio on social media. I’ll link off the links in the show notes and she has an amazing book. Can you tell us what the name of the book is?

Dr. Riehl (30:32):
Yes. It’s Mind Your Gut, the Science-Based Whole Body Guide to Living Well with IBS. I co-wrote it with Kate Scarlata and we’re really proud of it. It’s now available in Spanish. We also just heard it was available in Turkish, so it’s getting around the world and we’re really excited for people to continue to read it.

Jessie (30:54):
I love that. I’m going to have to get it for my family members when it comes out in Chinese or maybe I have to translate it first for

Dr. Riehl (31:00):
Them. We need to do that. Yes. So we’ll have to mention that to the publishers.

Jessie (31:07):
Please do. Again, thank you so much, Dr. Riehl.

Dr. Riehl (31:11):
Thank you.

Jessie (31:12):
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 the 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/masterclasstoregister. Until next time, take good care of your gut and hears 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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