The Gut Health Podcast

Navigating Life with Celiac Disease: Insights from Dietitian Experts Nick Trott and Lori Welstead

• Kate Scarlata and Megan Riehl • Episode 10

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Discover the intricate world of celiac disease with insights from two esteemed GI dietitian experts, Nick Trott of the Royal Hallamshire Hospital in Sheffield, England and Lori Welstead, from the University of Chicago Medicine. Within minutes of this episode beginning, you learn that a celiac diagnosis can happen in the absence of noticeable GI symptoms and that it is possible to find great delicious gluten-free meals outside your home with some tips and tricks!

Kate, Dr. Riehl and their guests highlight the challenges and triumphs of living gluten-free head-on, unraveling common misconceptions surrounding gluten-related symptoms and the necessity of gluten-free diets. We shed light on personal stories of dietary transitions (and the often undiscussed topic of food shaming), the grief of losing gluten, and the resilience needed to embrace a new lifestyle. While there can be emotional and nutritional challenges that accompany this diagnosis, you will feel validated and hopeful throughout this episode as you hear the latest research advancements and the evolving landscape of celiac disease management. 

You are in for a gluten-free treat with Episode 10 as it is packed with practical guidance, hot off the press science and expert insights for anyone touched by or interested in celiac disease.



Helpful information and resources

Information on the drug development pipeline:

https://www.beyondceliac.org/research/drugdevelopment/drug-development-pipeline/

Learn about the clinical trial process:

https://www.beyondceliac.org/wp-content/uploads/2020/10/Clinical-Trial-Process-Infographic-from-Beyond-Celiac.pdf


The Dating and Celiac Disease Study

Lebovits J, Lee AR, Ciaccio EJ, Wolf RL, Davies RH, Cerino C, Lebwohl B, Green PHR. Impact of Celiac Disease on Dating. Dig Dis Sci. 2022 Nov;67(11):5158-5167.

https://pubmed.ncbi.nlm.nih.gov/35635630/

 

Restaurant finding app: Find Me Gluten Free 

America's Test Kitchen book: How Can it Be Gluten-Free 

Podcast and documentary: The Celiac Project

Third party testing: Gluten Free Watchdog

Thank you to Zego Foods for the sponsorship of this episode. 

Learn more about Kate and Dr. Riehl:

Website: www.katescarlata.com and www.drriehl.com
Instagram: @katescarlata @drriehl and @theguthealthpodcast

Order Kate and Dr. Riehl's book, Mind Your Gut: The Science-Based, Whole-body Guide to Living Well with IBS.

The information included in this podcast is not a substitute for professional medical advice, examination, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider before starting any new treatment or making changes to existing treatment.

Kate Scarlata:

Thank you. The Gut Health Podcast will empower you with a fascinating scientific connection between your brain, food and the gut. Come join us. We welcome you.

Dr. Megan Riehl:

Hello friends, and welcome to The Gut Health Podcast, where we talk about all things related to your gut and well-being. We are your hosts. I'm Dr Megan Riehl, a GI health psychologist.

Kate Scarlata:

Hi, and I am Kate Scarlata, a GI dietitian. We have a really exciting podcast today with two amazing, internationally renowned guests. We're talking about celiac disease, an immune-mediated condition that's triggered by eating gluten the protein in wheat, barley and rye.

Dr. Megan Riehl:

Yes, celiac disease affects about 1% of the global population, and if you or a family member are impacted, we have a gluten-free treat for you today. As Kate said, we're joined by two incredibly insightful celiac disease experts from both the US and the UK. That's right, friends. The Gut Health Podcast has gone global. Nick Trott is a gastroenterology expert dietician covering the specialist celiac clinic at the Royal Hallamshire Hospital in Sheffield, England. His areas of particular clinical interest include celiac disease, gluten ataxia, non-celiac wheat sensitivity and the low FODMAP diet approach to one of the common topics that we talk about here disorders of gut-brain interaction. In 2017, Nick attained a master's degree in clinical research from the University of Sheffield and is currently pursuing a PhD on the role of the dietician in the management of celiac disease.

Kate Scarlata:

Welcome, Nick.

Nick Trott:

Welcome. Thank you so much for having me. Guys, it's a pleasure and an honor to be on with you Megan, Kate and Lori. It's a full circle moment because I've shared so much and read so much of the materials you've produced. Megan, I can't tell you how often I've shared your diaphragmatic breathing video to patients. So, Kate, you've inspired a lot of my interest in the area. And Lori, lovely to be here and meet you as well.

Kate Scarlata:

Awesome and I get the pleasure of introducing my dear friend. I think we're soul sisters from another life or something. Just totally connect with you, lori. Lori is an amazing celiac expert dietician and she has spent the last 20 years at University of Chicago Medicine in there as a GI dietician, but really as a nutrition advisor for their Celiac Center, which is really world-renowned. Lori is a member of the Academy of Nutrition and Dietetics and the Society for the Study of Celiac Disease. Her clinical interests include celiac disease, of course, and other gluten-related disorders, but also eosinophilic esophagitis, constipation and again one of our favorite topics irritable bowel syndrome. Lori aims to help improve the quality of life in her patients by making realistic dietary and behavioral modifications. She was diagnosed with celiac disease in 2015, and it certainly has impacted her life and her career as a GI dietitian. So welcome Lori, thank you.

Lori Welstead:

It's such an honor to be here. I'm so excited to talk everything about celiac.

Dr. Megan Riehl:

Yes yes, we're so thrilled to have you both and, as we get started, we like to kick things off with a myth-busting question. So let's start with you, nick. What myth would you like to bust for our audience pertaining to celiac disease?

Nick Trott:

Oh, such a brilliant question, Megan, and I think both me and Lori will have a few of these to sink our teeth into. I think primary one that comes to mind for me is it's not a condition that always presents with people who are underweight or malnourished, necessarily, or people who just have GI symptoms. So classically we would think of celiac disease as presenting with someone very underweight, maybe chronic diarrhea, alternating gut pain and things like that. And that's certainly the case. People do present like that. But the modern diagnosis people can be a normal weight, have a slightly elevated body weight and have no GI symptoms at all. So that's one of the reasons.

Nick Trott:

It's a bit of a chameleon of a condition. It presents in a number of different ways and I think over the years it has affected our ability to diagnose the condition because we've become even clinicians come with some preconceived notions about the illness. So it's very important that as part of promoting awareness, that we say it's not just a disorder of the gut. My boss, professor Sanders, says the gut is the gateway but then the disease can affect other parts of the body. So I'd say that would be one of the things I would think of is presentation cannot just be GI.

Kate Scarlata:

Perfect. Thank you, and Lori, how about you? I know there's a lot of myths out there surrounding the gluten-free diet. Would you like to myth bust something for our audience? Absolutely.

Lori Welstead:

So I think one of the big ones is that people automatically think that a gluten-free diet is going to be healthier for like the regular population, right? So specifically, we know that the gluten-free diet is necessary for celiac disease but for the rest of the population, you know, they might not need to be gluten-free. They might notice if they go gluten-free they might have less gas and bloating. But we know, through Monash University down in Australia they've done some studies and they find that the fructans, which are the fermentable part of wheat, rye and barley, are the ones that are really sometimes driving those GI symptoms and it's not necessarily the gluten which is the protein in wheat, rye and barley. So I think that's a big one. I see patients all the time outside of celiac disease that feel that they need to be on a gluten-free diet, and so I think it's really trying to open their eyes and seeing if they can tolerate things like sourdough bread versus being fully gluten-free if they don't need to be.

Kate Scarlata:

Yeah, that's important because, as you mentioned, sourdough bread, because of the processing, the slow leavening, it still has gluten not appropriate for celiac disease, but it will reduce the fructans often and can be tolerated for people that are fructan sensitive. So that's a really, really important point.

Dr. Megan Riehl:

So while we all can't travel overseas, Nick, you are working in the town that just hosted the International Celiac Disease Symposium, so that's quite convenient for both you and for us to learn, and we would love for you to share. Let's go your top three most interesting research updates or findings from this most recent meeting.

Nick Trott:

Thanks, Megan. Yes, we were very, very lucky. Not often with these conferences you have to travel quite a distance, but I could just stay home and it was on my doorstep just down the road, so it was wonderful to have it in Sheffield. We had over 600 clinicians, so that included psychologists, dietitians, food technologists, gastroenterologists, as well as other sort of expert areas. Charities and patient representatives have come along from a number of different countries.

Nick Trott:

Representatives have come along from a number of different countries and I think what came out in my mind there were several things that flow into each other from diagnosis to treatment. So the first thing that came out is certainly and this is starting to sort of, I think, get into clinical practice now is the idea that we can diagnose people without a duodenal biopsy. So traditionally the diagnosis of celiac disease had primarily been with clinicians, who have then been, hopefully, case finding, so looking for people who likely have the condition, based on symptoms and based on blood work, and then testing for it serologically. We have a number of different tests that are used around the world. Primarily, it's an antibody called tissue transglutamase that is used, as well as some others called the endomysial antibody. In Europe they use deamidated antibodies as well, and that's very useful. But then we need to traditionally follow that up with a duodenal biopsy, and in pediatrics they haven't been doing that for a long period. They've just been using blood work.

Nick Trott:

And now in Europe, post the pandemic and during the pandemic certainly where I'm from in the UK we issued some interim advice about using blood work alone.

Nick Trott:

One of the advantages of that is people don't need to have an invasive procedure and hopefully it would mean we'd be able to recognise the diagnosis and get more people diagnosed. In the UK it's estimated that probably only about 36% of people have been diagnosed, so there's a big burden of disease that goes unrecognized and we think by just using a serological diagnosis we may be able to recognize the condition and reduce the burden of unrecognized disease. So we know and Lori will probably go into this as well that it can have a knock-on effect in terms of the comorbidities and untreated celiac disease on bone health, vitamin and mineral status and even things like there is an associated risk of small bowel cancer with a condition, although that is a fairly low risk. So we really want to get the disease recognized and diagnosed. Now there are some issues with that serological diagnosis. We have to be very, very, very careful how we apply it. It's still considered in the stages where we need to know more how it's going to impact practice. We certainly don't want to dilute the diagnosis.

Nick Trott:

So, if we do go down that road.

Nick Trott:

It needs to be done in a very careful way where people are not just diagnosed on the wrong level of the marker. So we use this has to be 10 times the upper level of normal to be a proper diagnosis. And then people need access to their celiac dream team. I know that Megan and Kate often talk about the IBS dream team. That's right. Yeah, in celiac disease we need a celiac dream team, which usually is a yeah, it's a combination again of a dietician, ideally a GI psychologist and that's something we need to develop in the UK but also gastroenterology. So I think that would be my one big thing take away the development of that. But equally, we need to be careful about how that's applied. And I'm just aware that I'm going on a bit. Should I move on quick?

Kate Scarlata:

You're good, you're good. What else? What else? Anything really? Yeah, like just hot off the press.

Nick Trott:

Yeah. So moving on from sort of the diagnosis to treatment, what we're looking at now, I think, is how we get access to people that are, you know, most relevant to that care and that treatment. So for me, obviously, hopefully it doesn't. I know it's three dietitians here but it is about aspect to GI dietetics and certainly in the UK that's been a problem having the specialism available. So we often think about how we can get access to dieticians and I think one of the things that came out of work that we're doing locally in Sheffield but also my dear friend and colleague Cristian Costas in Bradford and Dr Yvonne Jeanes down in Roehampton University in the UK, we're now developing ways that maybe people can access specialist GI services, dietetic services post-diagnosis. So Christine is doing digital work about digital review and follow up and myself or Yvonne, we've been looking at digital webinars. Hopefully we're developing a national webinar in the UK where people maybe you can't get access, maybe to a specialist GI dietitian can access that as a service and even though maybe that's not individualized like seeing me and Laurie individually it means we're getting in the initial vice out in those first few months post diagnosis so people can get accurate nutritional information about how to follow the gluten-free diet and Megan

Nick Trott:

I think the third thing that came out and hopefully you'll be happy to hear this is the steady and I would say it needs to be quicker integration of gi psychology into celiac disease treatment. We were very lucky to have Dr Rosie Satherley from Surrey who presented, and we're working together on integrating dietetic and psychological practice together and how we can do that to enhance those areas of practice. So for people in celiac disease a bit like we may see in patients with DGBIs and disorders of gut-brain interaction there's a subset of those patients that do present with maladaptive responses to the diet or have specific challenges in terms of disordered eating, and Rosie has done a lot of work in that area. So we're hopefully going to integrate recognizing the condition more, getting access to GI dietitians more and also integrating psychological practice. So those are the three big things I would think that came out of what I found interesting from the symposium.

Dr. Megan Riehl:

This is fantastic. So you know, really so many people with a variety of GI conditions deserve that dream team and that the evolution of the dream team is to have some digital therapeutics available and also kind of scouring and putting all of this work out on the internet from reputable sources so that people that are looking and they're curious about this diagnosis they're finding the work that you're doing and your colleagues. So this is really exciting, innovative information coming out of the UK.

Kate Scarlata:

I love it. Yeah, you guys seem to be just, in some ways, a little bit ahead of us in even just the role of the UK. I love it. Yeah, you guys seem to be just, in some ways, a little bit ahead of us in even just the role of the dietician.

Nick Trott:

It's always we're lucky in the center I work in and a number of different centers, and I think that practice is getting replicated around the UK of always a dietitian with a specialism working with a GI doc to ensure that we're working seamlessly, but then getting referrals in from primary care and maybe even getting patients referred in that way. So it's just another pathway into recognizing the condition.

Kate Scarlata:

Yeah, absolutely so Lori, I wanted to talk to you because I always found it You're just so candid and honest about your own celiac diagnosis and really the grieving process of not being able to have some of your favorite foods. You live in Chicago. It's like Food Nation. I don't think we talk enough about that grieving process of losing some of your favorite foods with the diagnosis of celiac disease. Could you share just a little bit about your own experience and then also you know how you help your patients through that or just recognize that it is somewhat of a grieving process?

Lori Welstead:

Absolutely. That's such a great question. So you know, I was working as a dietician for 11 years when I was diagnosed. So I already had seen, you know, thousands of patients at that point. So it's such an interesting thing for me to get diagnosed, right, because, yes, I love gluten. I always would say gluten was one of my best friends. Right, I live in Chicago. Everything there's just gluten everywhere. Right, so it was such a I had a really more in the loss of gluten, Like it was like a family member dying or a friend that passed away, Right, so I mean, I was.

Lori Welstead:

I went through all the stages of change. I was in, you know, denial, then I would be fine, and then I'd walk by a food truck and just start crying, right, because I'm like, oh my gosh, they all know my name at this food truck, Like that was. You know I was married to a chef and you know we all, we did everything was about food. So it was such a big change in my life, Right. So what really helped me overall? Like even when I was talking to patients, to just to help them and listening to them and listening to you know, this is not easy. This is a big part of your life that you have to, you know, adapt and change and you know swap out some things.

Lori Welstead:

So, even with my patients, I always say, now, what do you miss the most? Right, because it's trying to find those different things that you can swap out and you can have some replacements. And so even in my, you know, journey, I've tried so many different foods. Some things are not that great and it's not a great swap out. So I always try to embed that into my sessions with patients to find, okay, what are you really missing? Let me see what I can help you to find a good swap out. Right, Because you want to find some joy and find some delicious food, but not just be so doom and gloom about it.

Lori Welstead:

So, and then, another thing that really helped me is, you know, I had two very early miscarriages before I was diagnosed. So that really helped me to say, okay, I want to be healthier, I want to, you know, and now I have two healthy children that were born, you know, naturally, right. So just on a gluten-free diet for one year. So I think that also helped to really motivate me and also helps to motivate my patients, you know, just to know that just by making a small change, which is not easy, can really make a big difference in your life and your energy and all of that. So I really found that I actually had more sustainable energy, even though I always had energy before. This was more sustainable after I went gluten-free and I was finally diagnosed.

Kate Scarlata:

So those are great motivators, right. So you know talking to if it's a young woman that would like to have children or someone that's feeling particularly fatigued, because I know fatigue can be something. You know I think of celiac disease in my patients with fatigue. Right, it's a common problem in undiagnosed celiac disease.

Dr. Megan Riehl:

And headaches. Headaches are another one. Patients where they'll say I had headaches and migraines for years. That to Nick's point, you know no other symptoms. But that was one of the symptoms that improved once they got their diagnosis and started the diet.

Kate Scarlata:

Yeah, so that's a good motivator. But you know, I think at the same time we do need and in certain cases you know, a GI psychologist could be really helpful here with patients that are and I know I just wanted to touch on this because I think this is a big issue too With celiac disease or another type of gluten-related disorder, there's a lot of food shaming why are you on that diet, just have a bite? Or holidays like, oh, we've got to make a gluten-free dessert. How do you help your patients navigate that? And let's start with you, lori and I'd love you to chime in too, nick, on this, because I do think, especially this episode we're going to be airing near the holiday season, and I do want to address that piece because people living with food intolerance deal with it all the time. So could you start with just a couple thoughts on that, Lori?

Lori Welstead:

Sure, so yeah, you know, and again, this is not a typical someone goes on a diet, you're just going to go off it for certain times.

Lori Welstead:

So I really try to explain that to my patients like this is going to be lifelong and you know what are the things that you might miss at your different family gatherings.

Lori Welstead:

Let's see some different swap lots, whether it's you know pie crust or different things that you can have in place and really just kind of educating and slowly explain to your family.

Lori Welstead:

Because, yes, I have a lot of families and even patients that push back and that cheat a lot. So it's trying to find what is going to help to motivate them to kind of stay on the diet and to listen to their family members but also try to educate them as well in a nice way about it. Because, yes, we absolutely get people that, oh, no big deal if I cheat, but we know that if you are cheating and not following the gluten-free diet you might have that kind of smoldering inflammation in the GI tract that can spark other autoimmune or other conditions. So again, it's all about, you know, education and the patient also not wanting to if they do have overt symptoms, not just cheating and then feeling sick, even those that don't have overt symptoms, if they're cheating, really trying to educate them from the ground up, to explain to their family why they have to stay on this diet? Because, yeah?

Kate Scarlata:

it's not easy. It's not easy, and could you like what would be your elevator speech to a patient when they're visiting with people that don't understand? I always do that with the FODMAP diet. This is what it is, and FODMAPs cause me pain and that sort of thing. Is there an elevator speech for patients, maybe that they could tell their family or friends?

Nick Trott:

Absolutely. I just love what Lori was saying there about smoldering inflammation as well, because you do see that with patients and yeah, it's fantastic Really, just following on from what Lori was saying, I think it's so important. It's friends and family illness. So when we do group clinics we invite everyone along. So that would be sons, daughters, and often the direct family members need testing as well. Incidentally, we would encourage that there's a 10% increased risk in first degree family members.

Nick Trott:

But we always emphasize that you know this is not a lifestyle choice. If you were treated for, you know, IBD or diabetes, you would have medication and the medication, the treatment for celiac disease is the diet. So it's an autoimmune condition, it is a disease treated by a dietary approach. But I think I often like, and I think you have, to think about the individual person and what's going to the situation, because sometimes you have to, I think, not to use that metaphor of battles, but you have to pick your conversations carefully, sometimes with family and friends, but sometimes knowing the underlying tests can be useful. I've had this fed back to me.

Nick Trott:

If you know that, you know you've had this elevated tissue transglutamate, you know you've had a duodenal biopsy, what can be really powerful for patients is using that language because it emphasizes a disease, like you know, saying "I thought it was a lifestyle choice, but I have a TTG, you know, over 300. And when I had my biopsy it showed a mass grade 3A or subtotal villous atrophy. So you're explaining that language and quite often people will emphasize oh, this is a person who's actually gone through that diagnostic process. This is not just an intervention because I've read about it in a magazine or I've heard about it from someone online. So that is a strategy that can be helpful. But I think it is that emphasizing this is the treatment for my autoimmune and it is a multi-system autoimmune disorder, so we have to take it seriously. So that's something that we do use, but hopefully most of the time after a number of know everyone's in everyone's business with diet and making judgments and trolling and it's really.

Kate Scarlata:

It's rough out there and people that live with food intolerance. It's not just a choice, and so I think, yeah, we just need to empower them to be strong and fight against the trolls.

Kate Scarlata:

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Kate Scarlata:

Nick I wanted to ask you back to the meeting and I know there have been alot of different celiac treatments trying to kind of come up with other things, whether it's enzymes that break down gluten vaccines vaccines, a number of things have been trialed and everything seems to fizz out by phase two or three. Was there anything really exciting on the pipeline for celiac disease at the meeting?

Nick Trott:

Any rumblings? Yeah, I think this is a question that obviously we get asked a lot in clinical. Lori, I'm sure you must get asked this a lot as well. You know, will there ever be an alternative to the diet? Yes, I can follow it, but it would be nice if there was a possible alternative.

Nick Trott:

And I think I would split these things up. Like you say, Kate, they have to go through this proper sort of scientific process of human trials and eventually hopefully getting regulatory accreditation in the uk and around the world and in America. I would say I'd split them up into things I would call adjunctive treatments. So that are things that probably will come online first. I still think we're maybe a few years away, but those are the things that are probably going to become available. When we say adjunctive, what we mean is it's not a replacement for the gluten-free diet. So these would be things like you were saying, kate, things that maybe block gluten in the GI tract to a degree, or glutenases that break it down effectively. So those would be things that are probably going to come initially Again, I think these things are a few years away and then we're looking at immunomodulating drugs

Nick Trott:

that may eventually be more things that are going to hopefully normalize the immune system would mean that people could go on to a more standard diet, but those things are still a number of years off and it is frustrating. I think one of the things about the way these things are reported you see, maybe a trial online is reported, but we've got to be aware where it is in that pipeline of drug development and like whether it's an IBD drug or whether it's a drug for diabetes all these are the conditions we have to go through the same process for drugs for celiac disease. I think we're at a time where we've never been closer, but we're still a number of years off. I think in the and Lori, please tell me what you feel

Nick Trott:

I think sometimes, when people hear cure for celiac disease, what they're hearing is an injection and they're done, and they're out the door down to a pizzeria to get a standard pizza. That's not the way it's going to go at the moment, with a lot more work to do, and so and I think there will always be and again I'll be interested to hear what Lori says I think there'll always be a subset of patients that make the choice that they want a dietary treatment. The point is is to have a number of different tools in our armamentarium, in our knapsack, and that may be adjunctive treatments, it may eventually be immunomodulating drugs, but it may be a diet. I think likely. Like I say, the first things that are probably going to become available is following a gluten free diet, but something that would protect you when you're out and about or on holiday, and there are no situations and Lori will know this from her lived experience the big challenge is often eating out and going on holiday, and I'm sure you could speak to that, Lori.

Kate Scarlata:

Absolutely yes, Lori

Kate Scarlata:

any pipeline drugs that you've heard of or anything going on at University of Chicago?

Lori Welstead:

You know, I know we have a couple of studies going on. I don't know all the exact details. There's like a D-challenge study going on. There's a couple of different things that we're doing and there's another one coming down the pipeline that we're working on. That's going to be with Columbia and Vanderbilt and Beth Israel coming up, so that will be a clinical trial. Yeah, so there's some things coming down the pipeline but no outcomes yet. We do have a brain fog study going on at University of Chicago. I actually took part in it, I was one of the patients. So there's some interesting things that they're looking at to kind of look at those symptoms that it's hard to really explain, right, brain fog when it comes to celiac disease. So you know there were functional MRIs and things like that after getting a gluten challenge that they did. So there's a lot of exciting things that will probably be coming out once that study is completed.

Kate Scarlata:

Yeah, I often think of you know, I've been doing this for a million years. So I started dietetics, you know, late 1980s, right, and celiac disease. Like we knew nothing, nothing. I mean, I was like I had to go to another hospital to get a gluten-free diet handout. It was so overwhelming because it's, you know, it's a lot right, there's a lot of nuance and there was no gluten-free products. There's a lot of nuance and there was no gluten-free products. So really seeing this evolve. And gluten-free bakeries there's a new gluten-free bakery in Boston everyone's raving about by this Michelin Star chef. It's really nice to see an awareness. We're diagnosing more people and we have more yummy foods to provide and more educated. We still lack educated dieticians but there is far greater interest than there was in the late 1980s.

Lori Welstead:

Yes, oh, absolutely. Even when I started I mean even in my internship I had my case study was celiac disease and I had to do so much research and that was back in like 2002. Right, so it was like there was not much out there, right. And then, even when you were diagnosed, you would get a binder and patients would have this big, huge binder, and that it was just very overwhelming, right. And there was no clear labeling. So now it is nice, the labeling's a little clearer. I mean, I used to call different companies to see what was in their stuff because there was nothing. So we definitely have come a long way, for sure.

Nick Trott:

I think Lori makes such an important point there. In the UK there was a recent study by my friend, Yvonne Jeanes. Maybe about 80% of patients were not getting adequate education on the diet. And if you think about the health skills we're asking them to undertake label reading, navigating social situations, and then, on top of it, what we want them to do is follow what we would class as a healthy diet as well, that we're encouraging everyone to do so. I think you get this.

Nick Trott:

You know multiple strands of treatment burden and one of the things that I think can be frustrating and again it'd be interesting to hear what you say from the US perspective, laurie is like a lot of those foods that are culturally relevant for people. You know breads, pastas and things. They're kind of demonized in some ways, and then we have this ultra process component coming into it and, of course, we have to be aware of overall dietary patterns. But it's so important to food related quality of life. One of the things that we did locally was actually look we're waiting for this data to be published at the moment, but we noticed that younger patients tend to have a degraded food-related quality of life with celiac disease and they're often the people that are most challenged in terms of, you know, going out and socializing, and I think you know labeled gluten-free substitute foods.

Nick Trott:

What we need to do is give people the health literacy skills to choose the right one to fit in an overall pattern that's going to best support their metabolic health and their improvement from celiac disease. But we just don't want to dismiss these foods out of hand. On one hand, I think it's the dichotomy of the gluten-free space. People saying gluten is the devil, it's inflammatory for everyone. That's not true. And then when you're on a gluten-free diet, oh, it can be really harmful to your metabolic health. It's like any dietary approach the truth is in the middle and we need a moderate, sensible approach and give people the skills to be able to do it in a way that's going to support their long-term health.

Dr. Megan Riehl:

So this kind of feeds into why we see some of the documented connection between anxiety, depression and celiac disease, and there have been several studies that have shown that both children and adults with celiac are at a higher risk for developing these psychiatric comorbidities when we compare them to the general population. So you're starting to hit on some of the factors that contribute to this. Are there any other things that can really validate this connection for our listeners? And, Lori, I'll start with you, from you know, maybe your lived experience, but also your vast experience talking with patients about this connection?

Lori Welstead:

Yes, that's great.

Lori Welstead:

So I think, yes, it's very multifactorial, right. So for many patients, even myself, my primary care doctor, prior to me getting diagnosed, she was trying to give me all these like anti-anxiety, anti-depression stuff, and then, not even a year later I was diagnosed. So then I came back to her, educated her and she said, Lori, you have changed my practice. I am checking people for celiac disease, even if they have, because I only had constipation, I didn't have that much diarrhea, and so everyone would say, "oh, Lori, you just have IBS, right. And then I just chalk it up and say I have IBS, okay, okay, right.

Lori Welstead:

So I think there's a variety of things where, prior to you getting diagnosed, you might have and I had low B vitamin levels, right, b12. That's very important for your overall wellness you might have diminished vitamin D, which could affect you in so many different ways, right, it's almost like a hormone in your body. And then just other things, folate, and again just that feeling of not feeling very well, right. So I think that could be prior to diagnosis and then, of course, after you're diagnosed. I always talk to my patients about this. I refer many of my patients to our GI psychologist, Dr Alise Bedell, and so I work with her very closely, with a lot of our patients, because I think that's a huge component, because, again, when they first go gluten-free, again they're overwhelmed, they're anxious, they don't know what to eat, they're scared to eat out at all right, and so there's so many different components. So I think, again, listening to the patient, validating their experience, and then, you know, working with that dream team for sure.

Lori Welstead:

And then repleting their vitamin levels too, if needed.

Dr. Megan Riehl:

That's right, that multifactorial approach that you know you're not just anxious or depressed because you have celiac disease, it's not a just, it's probably, you know again, it could be vitamin levels, nutrients, the physiological symptoms of things, and then also you may be experiencing symptoms of anxiety and depression because you have this new diagnosis. So let's look at things holistically and Nick any other factors that come to mind with your experience.

Nick Trott:

Yeah, I think Lori summarized it. It's always that combination of the underlying organic autoimmune that can drive reactions from a sort of cognitive you know, mental health status. And we also get people and again I'm sure Lori would have seen this people who become, they normalize their symptoms. So they'll often come into clinic and I've been told I've got celiac disease but I feel fine when I'm eating gluten. And then you can have that discussion and go through things and they'll come back into follow-up in four to six months and go I hadn't realized how unwell I was. So they've normalized their pre-morbid state. So that's something that we're aware of sometimes. But equally, I think the other side of it it goes back to Rosie's work. So she's developed a tool called the CDFAB, which is behavioral too, that we can look at in terms of sort of like treatment burden, of following the diet. So you will have people that you know they'll come and I'm sure you know we will have all had this experience in different GI conditions. Or you know I don't like to eat out, or I didn't go to my cousin's wedding because you know staying home keeps me safe. So you get this diminished quality of life because of fear of symptoms and that can feed into things like ARFID, you know, avoidant restricted food disorder in some of our patients. So I think a lot of more work needs to be done in how that area is impacted in celiac disease and again with work like Rosie and other GI psychologists, you know, pioneering that. But it's a very important combination, I think. The one other thing I would add in and we definitely need more research so we work with the neurologists in Sheffield. One of my colleagues, professor Marios Hajidvassiliou. He's looked at a number of different years from the neurological side of the patients with celiac disease. So this thing called gluten ataxia that we know can affect a subset of patients, but again, there's a lot less known about that than celiac disease and celiac disease in some ways is a Cinderella condition. So I think over the next few years there's more researches than in that area We'll know how to identify people that are having maybe the neurological effects of gluten.

Nick Trott:

One thing I would say that I really want to caution people about again from the online dialogue in this area. You do get non-traditional practitioners saying things online about gluten. That is just fear-mongering. It's so important that if you've got a concern about any symptom that you eat. When you eat gluten, please do not cut it out of your diet just because someone online has said something or you've been emotionally sort of heard something online that is affecting your fear about eating it. For the vast majority of people it is not going to be a problem. We know that gluten can be included in the diet for thousands of years, you know in humanity. But I just think when we're talking about these niche areas like the neurological effects or these other negative effects, it's so important that people get adequate, proper, scientific medical workup for their condition and don't just go on to the diet, because that can have a knock-on effect to your mental health as well

Dr. Megan Riehl:

100%, and can you just tell our listeners what gluten ataxia is?

Nick Trott:

Sure, yeah.

Nick Trott:

So gluten ataxia good idea to explain it a little bit more. Ataxia is a balance issue, so it can affect your gait. For some people it can affect even the things like their swallow ability. It can present, we think, a lot of what we call idiopathic unexplained ataxia. A subset of that may be to do with neurological gluten sensitivity. There is a set of antibodies being developed, so in celiac disease we use something called TTG2 or tissue transglutamase 2. There's an antibody for the neurological condition called TTG6, but it's only available in certain specialist centers. So it's one of those things I think over the coming years that will get used more and maybe applied more.

Nick Trott:

But it's very, very important that people do not self-diagnose, I think, particularly with the neurological side of it, because we're talking about the brain and people's balance and those other conditions. It can sound very scary, but it's very important that people get properly worked up medically for that. In terms of what sometimes I read online non-traditional practitioners, if I can word it that way, the politest way they're sometimes taking that science that's been taken and misinterpreting in it. And it's so important that when we talk about this yes, we need to talk about it in a public way and share that to raise awareness. But it's really important that people do not assume they've got a condition like that without proper discussion with a neurologist and maybe a gastroenterologist to a degree.

Nick Trott:

So it's a condition that we do see and we support people with a gluten-free diet but, like celiac disease, they need follow-up to monitor their nutrition, to follow up their response to the diet. Patients like that often do need MRI scans. They'll need what we call a spectroscopy, something that we would do locally that looks at certain chemicals in the brain. That can be done, so it's very important. It's a very niche diagnosis. It's rare. We don't want to unduly scare people about a condition like that, but it's something that we need to acknowledge. That warrants further research and exploration and treatment where appropriate.

Kate Scarlata:

I just want to interject quickly because you're saying proper diagnosis, proper diagnosis and the importance of not mucking around with a gluten-free diet on your own, because we need the presence of gluten in the diet for proper diagnosis. And again, being in dietetics, a million years no one was going gluten-free on their own, so we knew they were eating gluten and we tested them. But now so many people are gluten-free and even the physicians aren't even asking that question. So for our listeners, you need to be consuming gluten and for proper diagnosis, don't self-diagnose. And we're talking like the equivalent of a couple slices of bread. I'm going to ask my celiac experts for about a month. Is that reasonable?

Lori Welstead:

Yes, we usually recommend. Okay.

Kate Scarlata:

Okay, so I'll leave that there.

Dr. Megan Riehl:

Okay, that's a mic drop moment. We need those that can consume gluten to consume it, and if we're curious about a diagnosis, we still need you to consume gluten. And another thing that you mentioned earlier is ARFID, which is a complex eating disorder where an individual is consistently avoiding specific foods or entire food groups, and this is problematic because it results in nutritional deficiencies, weight loss and other just psychosocial challenges. And recent research and this is really emerging is showing that ARFID is quite common in people with celiac disease, as well as other GI conditions and those that have more ARFID symptoms, those with celiac disease are more likely to have higher rates of anxiety, depression and that lower quality of life that you've been discussing, Nick and Lori, and so just I'll take this opportunity what are your thoughts on this connection and understanding ARFID a little bit? We're really early on in this, but how do you see this in your clinical practice and patient care strategies that we want people to be aware of? Nick, we'll start with you.

Nick Trott:

Oh, thank you. Yeah, so I'd be fortunate enough to work with some specialist eating disorder colleagues more in the looking at DGBI space on this and I think, Kate, you'll be able to speak to this. One of the problems we have in GI conditions sometimes is we don't really have validated screening tools in the same that we would do within the eating disorder space. So I think we have to be careful, a little bit careful of how we apply some of those screening tools. So I think we have to be careful, a little bit careful of how we apply some of those screening tools. I will use the short form, ARFID questionnaire, sometimes with patients, but more as a discussion tool rather than obviously as a dietitian. I can't diagnose anyone with a condition like that. You know we need the support of psychology and specialist colleagues. But again, because of the nature of the job that me and Lori will do and I'm sure Lori will speak to this as well we have to have an awareness of how the diet can impact people and I think we can signpost people to the proper services.

Nick Trott:

I do see people that I say would fall within that range of sort of symptoms and we have that discussion and then we often refer them on for further support and assessment. Locally where I work, there are some, depending on how they're presenting, there can be some self-help materials that people can use or then they might be able to refer it on for further assessment. But I think it's again, it's an area that warrants more research and we need to have clinicians have an awareness, and that's why I would say it's so important to have this multidisciplinary approach and to work with colleagues that can raise this awareness and teach us as GI dietitians.

Nick Trott:

So in the UK, Kate, I know you were saying maybe it feels like in the UK we're further on with dietetic practice in some ways, but we're so far behind with GI psychologists and I look with envy at the US and how well you integrate it into care. So I would say we do need more psychology support and hopefully with my colleagues like Rosie, we're doing that. But I would say we do need more psychology support and hopefully with my colleagues like Rosie, we're doing that. But I'd be very interested, Lori, of your experience as well.

Lori Welstead:

Yeah, I mean, I think it's a challenge because if you think about the gluten free diet, you have to essentially avoid certain foods, right. So that again could be a challenge initially and can kind of drive this right. So I have patients that will say I have not eaten out in two years and I'll say, well, that's terrible, that's not where we want you to be right. Or they'll say I'm gluten-free, dairy-free, soy-free, nut-free, and they don't necessarily have to be, but they read some misinformation, right. So I'm constantly trying to again kind of myth bust, like you know, and I'll explain to the patients that I also have celiac disease, that you know you could eat out, we can find places for you. You don't have to only eat out of only gluten-free restaurants, right. So I think there's so many different ways that I'll go about this. And also even dairy, right. So patients think like they might just be lactose intolerant, but then they're thinking they have to avoid all dairy. So I really try to help to like, open up my patient's eyes to say wait a minute, we can add more variety, decrease that food fear.

Lori Welstead:

And again, I do work with our GI psychologists very often for some of these patients. So you know, even after an hour session sometimes with patients are like, oh my gosh, I feel so much better now, like you totally relaxed me, because now I actually feel more comfortable, versus always feeling like I can't eat out, I can't do this, I can't do that, right. So, and again, we know, there's that study that looked at individuals with celiac disease and the quality of life is literally people compared it to those that are on dialysis three times a week. For what? Four to six hours. So that is not where we want to be. So we really want to help to increase the quality of life with those with celiac disease for sure. So it's a challenge.

Lori Welstead:

Absolutely.

Kate Scarlata:

It is a challenge and I often think about, like, just what are some of the antecedent factors? Like who did someone say strict gluten free diet for life? You know, I mean we used to say that. I don't say it like that anymore, but you know, our just well-meaning colleagues really instructing and encouraging this level of hypervigilance that patients feel overwhelmed by and leads them down to this whole food fear, and I think we do need to understand that a little bit so that we can help patients prevent it, maybe right.

Nick Trott:

That's so important, Kate. I think we need to normalize people making mistakes. Obviously, we say it's important to aim to avoid gluten completely, but the truth is a lot of people will have accidental exposure that's just beyond their control and we need to normalize that, and often in the early days that may happen, but it can be a learning opportunity.

Nick Trott:

Yes, it may cause symptoms that can be very unpleasant. But equally, I think I would always want to encourage, and I think we would all do this in our practice. What we want to do is encourage people to share where things have gone wrong so we can have that open discussion about how we can think of strategies when they're eating out, when they're traveling, to minimize those risks, but as soon as you eating out of the home it's about understanding that it's about putting strategies in place that you know ensure that you're following the diet as best as you can, but in the real world you're only human and mistakes may happen, and understanding that, I think, can be useful as well.

Lori Welstead:

Yes, and I also wanted to touch on, you know, there's not much research when it comes to cross contact. We'd have a paper coming out and I was in charge of that section and if you think about it, there's literally what? Two fryer studies. There's not that much data on some of that. So I think sometimes yes, as dietitians you know, in my 20 years I probably worried some patients in the past. Now it's like, okay, we do need to have more studies, but again the studies always go to like drugs versus some of these food things right, there's not much money and how much cross contact is in this food, right? Or whatever, and the different practices. So, yes, I think it's really you know we have a lot of work to do.

Nick Trott:

Still that it's really you know we have a lot of work to do still, that's such an important point. When you get a room of clinicians in this area interested they're interested in the immunology which is so important they're interested in those things. When you get a group of people who have the condition, what they want to know is do I share toasters? What level of cross-contamination is important? Can I share spreads? You know they want to know the real practical things. Anne Lee, who's one of our dietetic colleagues in the area, who's one of my dietetic heroes she's actually, you'll be aware of this they're undertaking a kissing study at the moment and it's these real life issues to patients that are most important and that's where we need to fund a lot of the research about, I would say, things on the ground that improve people's quality of life is knowing these practical everyday things. So we need to recognize the basic research, but we need to recognize the patient research that's actively going to improve the gluten-free approach for people as well.

Kate Scarlata:

Absolutely, and that study was Jessica Lebovits right. So, she's at Columbia as well and she has celiac disease and she was chewing saltine crackers and then, you know, deep kissing, as she put it and yeah, I don't think kissing is a big risk. I think that's the bottom line, right Even if you're eating saltine crackers that stick to your teeth.

Kate Scarlata:

Let's talk a little bit about the use of oats. Specifically, we know they are technically gluten-free, outside of contamination and growing and that sort of thing, but some people have problems with oats. So what is your approach to including oats in the gluten-free diet for a newly diagnosed patient? And we can start with you, Lori.

Lori Welstead:

Okay, yes, this is such a controversial topic, right. So I think it's. You know it has to be very individualized. We do allow patients to consume oats. I know not every you know clinic does that. We say we want them to be certified gluten free. If they could be purity protocol, that's another.

Lori Welstead:

The oats are never grown in the same field as wheat and all of that. There's like another standard for that. But we want the oats to be labeled gluten-free. And again, we want to make sure someone's eating not too much oats, right, Because there's so many oats in different products.

Lori Welstead:

I had a patient that was eating 10 different things that had oats in them, right. So you want to look to see. You know, it's like one serving of oats per day, right, it might be like a cup or whatever after cooked. But we're just watching for all the other things that might be added. Now, again, there is a small subset of patients that do react to the avenin, which is the protein in oats. This was done in Europe and so there is a small subset of patients that do react to that. So we are aware of that.

Lori Welstead:

So, again, kind of treading lightly and then to kind of backtrack, say if someone's numbers are not going down on a gluten-free diet and their TTG is persistently elevated, then I like to go over the diet with a fine-tooth comb, see where there might be some issues. And sometimes we do take the oats out for a short time to see if we can get those numbers down. It has to be very highly individualized. And then, lastly, if you think about oats, they are high in fiber, right, so they might cause some gas and bloating. So I do educate my patients on that, just to be aware that you might find some gas and bloating but it might be just due to the fiber content in it.

Kate Scarlata:

Excellent.

Kate Scarlata:

How about you, Lori's?

Nick Trott:

Yeah, I mean Lori's describing perfectly what we would do clinically as well at an individual level. It used to be in the UK we would wait six to 12 months post-diagnosis to introduce gluten-free oats. Obviously the oats like Lori was saying you know this would be, I think in America it would be called a purity protocol oats. In the UK we would call them, you know, label gluten-free oats that have been tested below 20 parts per million. That's the only oats that we would consider suitable.

Nick Trott:

There has been a lot of research in Australia with Jason Tye-Din, whose Professor, Jason Tye-Din in Australia, has done a lot of work in this area. So it looks like from his work although I think he was saying this may be a slight overestimate maybe about 8% of the celiac population might have a problem with gluten-free oats, but it's likely potentially lower than that. So I think it's a very small patient population that we're talking about. For most people in our practice we would encourage them to include gluten-free oats from diagnosis and, just like Lori was saying, we would follow them up. And this is the important thing at the moment is follow up, so monitoring symptoms, monitoring blood work and seeing how they're responding, obviously listening to individuals about how their responses are.

Nick Trott:

I think, like you're saying, Lori, it's that thing between people maybe having somewhat of a fiber response to it or maybe even a slight nocebo. So nocebo is a placebo's evil twin. People will maybe have heard that oats can be a problem and then obviously they may develop symptoms from that. So that's a small subset of people that I think that can happen with. So I think the best tools that we've got at the moment is follow-up and monitoring blood work. Jason is looking, hopefully, at another, maybe a test that could be done that can help us identify people more accurately and earlier on in diagnosis, hopefully in the future. But I think it's a small subset of patients but hopefully we'll have watch this space because we may have other tests that we can identify these people with.

Kate Scarlata:

Perfect. Now what about nutrients of concern? Because I know that the gluten-free diet you know wheat is fortified here in the US, so a lot of wheat products will have those extra nutrients. That's not the case for the gluten-free grains. Are there particular nutrients of concern for a new diagnosis, particularly maybe just because of the disease itself and then the food products being not so great in certain nutrients? Could you speak to that, Lori, briefly?

Lori Welstead:

Oh, sure.

Lori Welstead:

Yes. So if you think about all those B vitamins so B12, folate they might be low on that at diagnosis. And also the foods are not fortified. And then also iron, so some people might be low on iron. So making sure that those levels are repleted and checking patients again if they're having fatigue, to check what their ferritin or their iron studies are. So those are. Vitamin D again, calcium could sometimes be diminished in some of the patients who want to look at their bone health. Make sure they're consuming those calcium-rich foods as well.

Kate Scarlata:

Yes, very important. So some of it's disease-related, that they might be low on them, and then other things, They're just not really getting a lot. And I would say fiber too, because a lot of the stuff is white rice. I don't know if that's the same for you, Nick. Is it a lot of stuff refined in the gluten-free space?

Nick Trott:

It is, and I think it speaks to again about health, literacy, skills and skills nutrition skills that we want everyone have to be able to look at food labels and to make an individual choice about the overall dietary pattern that you're aiming for. So I think there's a number of different elements to this. One thing I would say I think some of the intake issues on the gluten-free diet it's a specialist population that needs support, but they can be somewhat reflected by the issues we have at a general population level in terms of fiber intake. You know, if we look in the UK, we look at the National Diet and Nutrition Survey, the average intake of fiber of people from 18 to 65 is about 19 grams of fiber and that's often reflected in that. We would aim for 30 grams of fiber for most people, although that can be a little bit high all in one go if you're not used to it. So I think some of those things can be reflected in the general population. But certainly, just like Lori was saying, for us it would be calcium intake. We aim for everyone and I would say a lot of people.

Nick Trott:

If you're diagnosed post-40, you'd be wanting to have a baseline bone scan of your density, what we would call a DEXA scan undertaken to see if you need additional supplementation. But for everyone with celiac disease we would say obviously this may slightly be different between countries about 1,000 milligrams of calcium a day and that might require some supplementation. Obviously, vitamin D in the UK, where we live, in terms of the climate, we have to have vitamin D for everyone between October and March, about 400 international units and then you have to individualize it.

Nick Trott:

We will very occasionally it's fairly rare to trace elements, so copper, zinc and selenium, where patients seem to be having ongoing problems. And I would say there is some evidence that if you're anemic, you often present with a more severe symptoms and often, sometimes people can be anemic but without GI symptoms. So that's why sometimes it can be picked up. You may not have the gut symptoms but you may have iron deficiency anemia. So if that's something that happens, you get tested and celiac disease haven't been raised and there's no explanation. It's so important to think celiac disease in that situation.

Kate Scarlata:

Perfect.

Lori Welstead:

Yes, I've had so many patients that have been on iron infusions for years, and then their numbers would never replete until they were diagnosed.

Kate Scarlata:

So, yes, I think it's very important. Iron deficiency is a big one, yeah. So, Lori, can you just briefly talk about some of your top resources, whether it's a digital app for restaurants or just a few tools that you might give to the patient that arrives at your office?

Lori Welstead:

Absolutely.

Lori Welstead:

So I love the app for restaurants Find Me Gluten Free. It actually was started in Downers Grove, Illinois, where I went to high school, so it's a great app and now it's international, so it's in many countries. I love if people are really into cooking. America's Test Kitchen has a book that's called How Can it Be Gluten-Free. It's awesome. It talks about the science of all the different recommendations, and so I love that. The Celiac Project is a podcast and there's also a movie of documentary called The Celiac Project and they have over 400 episodes and it's a great one that I do recommend to patients just to listen to. I was interviewed for one of the episodes and then also I do like the Gluten-Free Watchdog. She does kind of third party testing. Tricia Thompson she's a registered dietitian as well with celiac disease, so she's a great resource and I reach out to her very often, even with my patients.

Kate Scarlata:

That's perfect, I love that.

Dr. Megan Riehl:

So we could talk to you guys all day, and we will probably have to have you come back on for sure, because we've learned so much from the both of you and clearly we could continue talking all day. We thank you for your experience and your expertise in this area and, as we wrap up our podcast, we like to ask all of our guests the following question Nick and Lori, what is something that you prioritize when it comes to your overall health and wellness? And, Lori, we will start with you.

Lori Welstead:

So I think one of my big things is joy, right, so I'm trying to find joy in my exercise, things that will bring me more energy and fun. So that was my food and with my exercise, so I'm very big on that. You know all the colors of the rainbow and then finding joy in all that I do.

Dr. Megan Riehl:

I love it. Boost those endorphins.

Kate Scarlata:

Yes, yeah, Lori is a rainbow queen.

Kate Scarlata:

I always wore my rainbow sweater for you, but it was too thick for this day. But yes, yes all rainbows.

Kate Scarlata:

How about you, Nick?

Nick Trott:

Yeah, absolutely the same. As I get older a little bit older now, maybe it's because of what I do as well I'm trying to focus on bone health a bit more, so I do a little bit more weight training these days. But like you, Kate, I like to get out into nature. We're lucky in Sheffield I can get out into the Peak District. But the other activity for my soul that I've always done is music. I love DJing, so I still do that a little bit. So I like to get out there and share some music and that's movement as well.

Kate Scarlata:

Yes, it is. My husband was a DJ for a short time too. How cool and loved it.

Kate Scarlata:

It was a good side hustle, but I'm glad you do that.

Nick Trott:

Spreading the musical joy.

Kate Scarlata:

Yes it's all about joy, All right. Well, thank you so much to both of you for coming. This was just as perfect as I expected it to be and just so informative for our listeners that are interested in this topic. So please be sure to subscribe, follow and like The Gut Health Podcast. Your support means the world, friends.

Dr. Megan Riehl:

Thank you for joining us as we grow this gut health community. We hope you enjoyed this episode and don't forget to subscribe, rate and leave us a comment. You can also follow us on social media at The Gut Health Podcast, where we'd love for you to share your thoughts, questions and experiences. Thanks for tuning in, friends.

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Kate Scarlata

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Megan Riehl

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