Join Colleen as we discuss the complexities of managing Eosinophilic Esophagitis (EOE) with Courtney Dunn, a fellow registered dietitian who not only specializes in this field but also faces the daily realities of the condition. Our discussion explains the different food elimination strategies and why identifying personal food triggers is critical. As Courtney shares her personal experiences with EoE, you will gain a better understanding of the psychological challenges patients face, learning how empathy and patient-centered care are paramount in supporting individuals as they navigate the emotional process of dietary changes and strive for remission.
Our conversation underscores the importance of empathy in treatment outcomes, leaving listeners with a resounding message about the transformative power of compassion in healthcare. Join us for this heartfelt exploration into EOE, where wisdom meets warmth in the quest for better patient care.
Empathy Meltdown? Why Burnout Busts Your Empathy Levels
NIH Article on EoE:
Eosinophilic esophagitis—established facts and new horizons
Courtney Dunn, RD
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Raise your hand if you know what the acronym EOE means. Now keep your hand up if you know what an EOE friendly diet is. Today we're discussing Eosinophilic esophagitis, or EOE for short, a condition that affects around 1 in 2500 people, according to the NIH. Now hold on. Before you consider listening to something else because you don't treat patients with EOE, let me assure you this one is worth the listen, so stay with me. My name is Colleen, I'm a pediatric PA and registered dietitian, and this is the Exam Room Nutrition Podcast, where each week, I'm equipping you with the nutrition education you never had in school to help you be a more compassionate, confident clinician. Eoe is a chronic inflammatory immune system disease exclusively affecting the esophagus, with a wide range of symptoms, and making the diagnosis can be very challenging. I am so excited for this conversation today, and you guys are truly in for a treat, because my guest, courtney Dunn, shares not only her clinical expertise as a registered dietitian for over a decade, but she shares her personal journey as a patient living with EOE. In today's episode, courtney helps me navigate through the complexities of an elimination diet. We explore the essential vitamins EOE patients should be on and we're going to tackle concerns of cross-contamination to make sure that our patients stay safe on their journey. Courtney offers a close-up glimpse into the dramatic impact EOE has on a patient's quality of life and the profound psychological effects of this challenging disease. Courtney points out that patients are mourning the loss of foods they've loved their entire life, and she teaches us how important supportive listening is for the patient to achieve remission. Don't miss the end of the episode in the nutrition notes segment, where I review a medscape article titled Empathy Meltdown why Burnout Busts your Empathy Level and I explain how your empathy can improve patient outcomes. Courtney, I am so excited to hear your professional and personal experience with EOE. Welcome to the show. Thanks, colleen. I'm excited to be here. Eoe is becoming more and more common thanks to advances in medicine, and we are getting better at diagnosing and managing the disease. We know that dietary interventions are a major component of the treatment plan for patients with EOE. So for those of you who would like to learn more about EOE, I'm going to link an amazing article from the NIH and the show notes, in addition to a ton of other helpful resources. But, courtney, I would love if you could start this conversation by giving us an overview of a typical EOE friendly diet, sure.Courtney:
So I mainly work with adult patients and after being diagnosed as an adult, I would say most of my experience with EOE is in the adult population. However, more people are being diagnosed with it recently. So a lot of the diet recommendations and disease management is actually extrapolated from the pediatric population for adults. So a lot of the recommendations that I followed myself and gave to patients come from that pediatric research. So there's not one size-fits-all diet for EOE. You know, unfortunately, like everybody is different, all of our bodies respond differently to food and especially with EOE. So mainly an EOE friendly diet would be avoiding any food triggers that trigger your EOE. So it can be an allergen in your diet that causes the immune response of theosinophils that attack your esophagus. So that's different for every person. So it's hard to say that there's like one diet to follow. But typically when patients are diagnosed they're started on a food elimination diet and then they follow that food elimination diet until they can determine which foods are their triggers and which foods need to be permanently eliminated from their diet. At that point and then, once they identify their triggers, it's just about living your life and avoiding the foods that you're allergic to that trigger your EOE.Colleen:
So the one size-fits-all is not appropriate here. So that's actually really helpful, because I remember from when I was back in college the elemental diet is what everyone has to follow. So has the research changed and the guidelines changed on that, or is that still a sake that if clinicians are still recommending that to their patients?Courtney:
So the elemental diet is obviously really restricted and that is really only achieved in patients where they might be on some sort of elemental tube feeding. So that would be more reserved for probably really severe cases of EOE. Usually the first line of determining what your food triggers are is that you would follow just an empiric elimination diet. So there's two different ways, mainly, that you can do it. You can follow the six-food elimination diet or there's a four-food elimination diet. So the six-food elimination diet avoids the top six allergens, so that's gluten, dairy soy, eggs, fish and shellfish and then nuts and tree nuts, While the four-food elimination diet only avoids gluten, dairy eggs and soy. So it's a little bit less restrictive. So those are the initial steps that you would follow.Colleen:
So let's just consider the six elimination diet. Are they eliminating all six of those foods at the same exact time?Courtney:
Right. So in my experience and what's typically recommended, when I was diagnosed with EOE I was having a lot of reflux and difficulty swallowing and chest pain and feeling like I was choking on food. So after my diagnosis, when they did an EGD and they showed us in the bills on biopsy, I met with my GI doc and they recommended that I follow the six-food elimination diet. So at that point I eliminated all top six allergens from my diet and then about six to eight weeks later it's recommended to undergo another endoscopy. So at that point they're testing to see if you have a cinephil buildup on that biopsy. So after I followed the six-foot elimination diet I had a decrease in my cinephil count but I was still having some of the cinephils on biopsy. So they actually started me on a PPI at that time. So once I started the PPI I could then reintroduce another food group. So I started with fish and shellfish first. Fish and shellfish and nuts and tree nuts are actually shown to be the less allergy producing for patients with EOE. So we usually start with the less likely culprit of the food triggers and then go from there. So you would have a repeat endoscopy about every six to eight weeks after you reintroduce a food group, if you don't have a decrease in your cinephil count. The threshold is about 15 cinephils per high-powered yield. If it's more than 15, that food is permanently eliminated. If it's less than 15, we can assume that it's safe for you to eat and you can add that back into your diet. So the elimination diet is not meant to be long-term and it's really a tool to help identify those triggers. What a useful tool.Colleen:
Thank you so much. I'm learning so much from you and of course EOE should be managed by gastroenterologists, so hopefully I have some listening. But I know the majority of my listeners are in primary care and we are still overseeing their care for EOE, so hopefully this is helping you guys consider some of these things, especially if your patients either can't get into their GI, can't get in to see them, or if they're just asking you some of these questions in clinics. So I wanna linger here a little bit longer because you're teaching me so much about the elimination diet. So we've got those six foods we're gonna initially eliminate for six to eight weeks and then we can start to slowly reintroduce one food group at a time, and you recommended either fish and shellfish or nuts and seeds. What would be the next progression of the addition of the?Courtney:
food groups. I also think that it's important that a patient has an allergist on board. So I worked really closely with my gastroenterologist and my allergist and then when I was diagnosed, they asked me if I wanted to see a diagician. But I figured I could do it on my own. But it's really important that each patient who is diagnosed with it is referred to a dietician and an allergist to also help manage these conditions. So I would meet with the allergist, we would discuss my progression and then she also asked other symptoms that I was having. I was having some dermatitis on my lips too with eating, so we tried to figure out like which foods were maybe causing that. I also have a history of asthma, so that was playing into it as well. So it's important to have those multiple providers. So when I would meet with my gastroenterologist and the allergist we would kind of decide which one would be safest for me to start with. So typically you would save gluten and dairy for the end, because those tend to be the main triggers for most people. So I actually reintroduced two food groups at a time because they figured that we could expedite how many endoscopies I needed to have. So I did the fish and shellfish and the nuts and tree nuts together, and those were fine. And then the next EGD. I did eggs and soy together and then I did dairy and gluten separately, just because those tend to be the higher allergen rest for patients.Colleen:
And you're eliminating those foods for about six to eight weeks at a time, and then you're following up at that point.Courtney:
Yeah, so I would typically have my endoscopies and then schedule another one. They wanted to weigh just to get yourself time to heal from the procedure. So it's definitely can be costly for patients and it can be a barrier to care to have to get these repeat endoscopies. So trying to group together two food groups, if you can, can help expedite the process and help undergo less procedures, which is always great.Colleen:
Yeah, that's a good point and I was just thinking that that's a lot of endoscopies to go through, especially if you're a busy working adult.Courtney:
It is definitely a challenge and it's unfortunate, since this is a non-IG mediated allergy. Skin testing is not necessarily accurate in EOEs, so the gold standard really is these biopsies through endoscopy.Colleen:
Now, are there any safe foods for all EOE patients, or is it really that individualized?Courtney:
per patient. I would say it's not individualized, because you could also run into patients who have other food allergies on top of EOEs. So we would think that rice and potatoes and peas those are not top six allergens that people can tolerate, but individual people might have issues or other food allergies with those foods. So I think it's really important that they follow with the dietitian so they can have a tailored elimination diet to them, but also so they know they're doing it correctly and they're being monitored for any sort of micronutrient deficiencies that they could develop Once they've established they're safe foods and some of those high allergen foods that they're perfectly fine to tolerate.Colleen:
Could this change over time? Could you develop an intolerance, or is it like once you're safe, you're good to go for the rest of your life?Courtney:
So that's actually an interesting question that I've asked my own allergist, because I'm not sure. So I was able to achieve remission with just a gluten-free diet and the PPI daily. So I'm pretty excited that I don't have a super restrictive diet. That's really great. But I've asked her if I'd be ever be able to eat gluten again and they don't really know the answer. So there's still a lot of ongoing research into the disease and management of it. There's some new medications that have come out, like biologics. I'm not a doctor so I'm not gonna get into that, but I think we'll just have to wait to see where the research goes.Colleen:
Yeah, it's so interesting and it is very much so developing disease, and so I'm so happy to hear that you're in remission with a gluten-free diet, although that's challenging in and of itself. So, beyond just figuring out your trigger foods, what are their challenges should our primary care clinicians be aware of when it comes to helping EOE patients?Courtney:
I think there's a whole host of challenges that patients with EOE phase and in addition to just not feeling good, you know, just your stomach hurts, it hurts to eat, you want to avoid food. That's in itself a challenge. But then you also have to consider, like the psychological impacts from this disease. So social isolation is a big one. You have these symptoms that you can't really explain to other people, like, oh, I eat a piece of bread and I feel like I'm choking on it, or my chest really hurts. People who don't experience it don't really know what that's like. So if you develop difficulty swallowing mid-meal, you're having to explain that to other people. Like, oh, I have to stop eating because I'm having trouble swallowing this. So it's isolating in that way. And then once you're following the six-food elimination diet, it's tough to go eat out with friends or worry about other people cooking for you because you don't know if their allergen foods are in what they're preparing. So that's also difficult. And then also the cost barrier. So changing your diet, having to eat specialty foods, having to undergo multiple endoscopies, all of those things can be pretty costly. So that's definitely a factor for patients. And then we also have to consider the nutrition implications of it. So, if they're on this really restrictive diet or they at risk for, you know, vitamin deficiencies, malnutrition, unintended weight loss, all of these are things that people at EOE have to consider.Colleen:
Yeah, so many more challenges than just like hey, follow this elimination diet, see you in eight weeks. You know it could be just so sterile our recommendations and it's so much more impactful than that. I want to talk to you on a personal level here. It probably took a little while for the diagnosis to be made. Just from what I'm hearing and what I know about EOE, what do you wish a clinician might have asked or done differently? That might have changed the outcome or changed how quickly you are diagnosed and we're able to get properly treated.Courtney:
So I think also the problem with diagnosis is that the range of symptoms can be very wide and you could go in with these oh, I'm having heartburn or difficulty swallowing, so that's kind of difficult to pinpoint what you think it could be. But also, if there are anyone like me, I also just thought people didn't feel good. Like I was like oh, it's normal, people's stomach hurt all the time, it's fine. So I look back and I was going years of just not feeling well, and that's pretty common. Most people experience symptoms for about eight years prior to even being diagnosed, as the symptoms build over time. Like I wasn't always choking on food, what really prompted me is that I would Be home and eating a sandwich and then feel like the food was stuck in my throat and I couldn't get it out. And I'm young, I shouldn't be choking on food. Like I knew that wasn't normal. But I'm also work in healthcare and have access to great healthcare and you know health literacy To. To then follow up with my doctor and say, hey, this is happening, this isn't normal. At that point they actually ordered a video swallow for me, which I didn't end up undergoing because I had met with the GI doctor at that point and they had said oh, this is probably not dysphagia, there's probably something else going on, we should do an endoscopy. So I was pretty lucky that I had pretty quick access and diagnosis once I brought up my symptoms. But you're right, there's a lot of patients who are saying, oh, I just get prescribed reflex medication or I just could told to follow a FODMAP diet, or the doctor doesn't think I need to undergo more EGDs to figure out what my triggers are. So I think, as we continue to educate providers and advocate for our patients and advocate for Ourselves, like, hopefully, that diagnosis and treatment can come quicker.Colleen:
Do you recommend that? We would ask all of our patients to lock their food, and sometimes is that an important and helpful step in diagnosis.Courtney:
I think it could be, because if you're noticing that it's maybe maybe every single food might be overwhelming to the patient, but Maybe when they're noticing an increase in symptoms, I'd always tell my patients like do you notice your stomach hurts? Like right down what you ate at that meal or what you had that day, and then if you can maybe see there's like a certain food that's linked throughout, and then as a provider, you can maybe like, oh, it's bread or eggs every time, like this could potentially be one of the top six allergens, super helpful.Colleen:
Do we need to be monitoring any routine labs, or are there any any labs that would be specifically helpful in managing?Courtney:
EOE patients. So I would say, in terms of vitamins, if you have a patient that's on a long-term PPI, it's a good idea to check vitamin B12 levels annually, and the reason why is just the way that vitamin B12 absorption works is that the the PPI is reducing the acid in our stomach, which then can reduce intrinsic factor, which is needed to bind to the B12 and help with the absorption and to the small intestine. So even if your patient's eating meat, which is our primary source of B12, if they're on the PPI, it's a good idea. Just check those levels and work, leave them if you need to. Also, if you have a patient who's dairy-free, making sure that you're being mindful that they're eating enough calcium in their diet, and I would check a vitamin D level annually as well yeah, that's a really good point.Colleen:
We tend to forget about some of the nutritional implications of those PPI's. So you mentioned vitamin D, you mentioned B12. Are there some vitamins that we should be recommending besides those, or should we talk about any of the meal replacement supplement drinks or anything like that with these patients?Courtney:
So I personally think it's a great idea to have a patient on just a standard multibitamin while they're in the elimination diet. Just because they're eliminating so many food groups, they could just be at risk for other micronutrient efficiencies. So I think a standard multibitamin is a safe bet. I would just encourage the patients to always check labels Sometimes they may contain gluten or soy just so that the Supplements are also allergen-free when they're following that diet. I don't typically recommend herbal supplements or medications just because they're not regulated by the FDA and they could have other implications. So I think a standard multibitamin is reasonable.Colleen:
Really, really helpful. I'm really good reminder to check for the allergens in the multibitamin, because you could be following this soy-free diet and then you're eating soy in your multibitamin oh my gosh, yeah it's tough.Courtney:
Label reading is an unfortunate thing with the OA too, because you never know. Labels change all the time and manufacturers don't have to tell people, so always checking the label, even if you think a food is safe, just to make sure that there's not an allergen in there when you're about to eat it.Colleen:
Are some people so sensitive that cross-contamination could be a concern as well?Courtney:
I think with any allergy, it's important to be mindful of cross-contamination. This is not an anaphylactic allergy, but also you don't want the information over time. So it's really important that if you're preparing foods so you use separate utensils, separate cutting boards or really wash the items well in between preparing a food that has an allergen and a food that does not have an allergen. It's also important to keep in mind. You know I follow a gluten-free diet, so I have my own toaster that's gluten-free. If I have to use a shared oven, I'll make sure I put down foil so that it doesn't have cross-contamination. That way, condiments can also be a sneaky place for cross-contamination. So if you're using mustard and Someone's using a knife and they spread it on bread and they put it in there, that could carry cross-contamination. So having your own condiments at times can be helpful, or making sure you're using separate utensils and cleaning them well.Colleen:
So many things that we don't think about as clinicians that impact your life, right? I mean that's, that's a huge cost too, literally like two toasters, where you're supposed to keep two, two toasters, you know.Courtney:
Two mustards. I honestly, what are we doing?Colleen:
here. Yeah, I want to linger a little bit on the cooking methods, because we talked about toasters and ovens and condiments and everything like that in the home. Does the cooking method matter for patients? Are fried foods Triggering, or is this again a case-by-case example of where it might differ for each patient?Courtney:
I would say with fried foods. If it's a shared fryer and they're say they fried A breaded item and then they're going to put in french fries, those french fries are not going to be gluten-free because the oil itself is going to be Contaminated. So that's definitely something to keep in mind when people go out to eat is that you have to ask if they have a separate fryer for their gluten-free items, because at that point there is a risk of cross-contamination. But if you're cooking at home, I there's not necessarily triggers of how you're preparing the food. It would just be making sure that, like there's certain sauces that don't have hidden gluten in them or hidden allergens, that's what you would have to be mindful of.Colleen:
So talk about you know that first question I asked you with the specific challenges that EOE patients face. This is a huge one that sometimes we don't really think of. When we're just giving like, hey, follow gluten-free diet could, like you know, go talk to the dietitian. That's really detrimental and stressful to patients. So I hope that my listeners are keeping that in mind when they're giving suggestions and recommendations, that they're keeping at that human level and maintaining compassion and understanding and walking side by side with the patient.Courtney:
And it's really a change in your quality of life. I live my whole life eating these foods that I loved and you also have to mourn the loss of that. There's a big change that you could lose cultural foods or foods that you grew up with, and we eat a lot of foods that bring us joy, and it's not just fueling our bodies, so there's really a social aspect to food that can be lost with EOE, and I even went through a period of time and I'm a dietitian and do this all the time where I was really bummed and I felt like I couldn't eat anything or ever enjoy anything again, and so I think allowing the space for patients to express those feelings and really empathize with that, that can also help with maintaining long-term remission, and it's also that's why people don't always follow the diet and they could have continuing symptoms just because they do want to eat the foods they love.Colleen:
Like that's tough too yeah, you said that so well is that you are mourning the loss of a food because, like you said, especially as an adult, right, you enjoy these foods for so long and now you physically can't have them. So what a journey. I mean, you're really inspiring. I've learned so much from you. I think a huge takeaway point is that empathy component, because it's it is a complete, drastic lifestyle change. So I'm so grateful for you and opening my eyes and I really hope that my listeners have learned a lot from you and they might be changing their approaches, whether it be what kinds of questions you're asking or what kind of recommendations you're giving. And then, of course, making sure you're checking in with your patient and asking hey, how are you Like, how are you doing with all of this? And I think just that simple question we forget to ask people because we hear you can walk in like hi, I'm PA Sloan, how are you? Good? Okay, and just like, move on. But I think if clinicians can pause and say, no, actually, how are you, how are you doing? I think it would open up a door for the patient on a whole another level, with trust and just that relationship with their practitioner. I'm curious to hear your thoughts if you think that would impact you as a EOE patient.Courtney:
I definitely think so. I think also my experience with EOE opened my eyes in a way as I was providing care for people as well, because I'm used to prescribing medical nutrition therapy and diets to help manage chronic conditions, and it's easy to just be like, oh, here's a handout, avoid these foods. And then, once the tables were turned on me and I had to do it, it was overwhelming and that's my job, so I can't even imagine how somebody feels they just got 10 minutes and a handout. I say good luck. So that's also changed the way that I deal with patients and really checking in and just providing supportive listening and be like I know this really sucks, I understand it and I think, having also the lived experience of it, that allows me to connect in a different way, to be like I get what you're going through, like these are things that might have helped me, like maybe this can help you. But yeah, just checking in, because we're all humans at the end of the day and this is a big life chain.Colleen:
I love that. Courtney, this has been an incredible conversation. Thank you so much for sharing your personal experience, and your professionalism and just your ability to connect with patients is really, really inspiring. So thank you for sharing that inspiration with us. Is there any final thoughts or anything else that we didn't touch on that you wanted to leave?Courtney:
us with I just think so much for having me, I think having more access and talking about the disease and then also ways to treat it so people know that there's hope and there's options and you can get to remission. So I think having more providers aware of it can help with diagnosis.Colleen:
You can follow Courtney on Instagram at EOE dietitian. She sees patients virtually, so if you are thinking of some patients that might benefit from working with a registered dietitian who specializes in EOE, courtney's your girl. She also has an ebook covering all things EOE and diet that I'm gonna go ahead and link up in the show notes below if you would like to learn more about EOE and nutrition, or if you would like to provide that for your patients, it is free. Courtney, thank you so much for being with us. Thanks so much for having me. All right, guys. Now it's time for my nutrition notes. In this section, I will leave you with a nutrition tip and encouraging quote or an interesting case that I think might add value to your day. So today I'm actually gonna be summarizing and reviewing an article that recently came out from Medscape and it goes really well with, I think, the theme of my discussion with Courtney today, and that is empathy. So this article from Medscape came out March 1st of 2023 and it's titled Empathy Meltdown why burnout busts your empathy level. I'm just gonna read a few highlights from it and have a little discussion of why I think empathy is so important in your patient care and why I stress this so much during each of my episodes. So the article starts by saying compassion is born out of a sense of empathy, the ability to understand and share the feelings of others. Studies on empathy show it to be crucial to quality healthcare, and not just for patients. In one study on empathy ratings among doctors, 87% of the public believe that compassion, or a clear and obvious desire to relieve suffering, is the most critical factor when choosing a doctor, and there's actually been some studies that showed that the more empathetic the clinician was, the better outcomes patients had. When one study, patients with diabetes treated by more empathetic positions had significantly lower rates of acute metabolic complications that required hospitalizations. Empathetic relationships with our patients can lead to fewer disputes, higher reimbursements, greater patient satisfaction, fewer malpractice lawsuits and a more rewarding experience for patients. An OBGYN, dr Trubo, was quoted and I think she says it really well. She said patients consistently mention how grateful they are that someone has listened to them and validated them. She says when patients feel heard and validated, they are more likely to communicate openly and this raises the potential of being able to create a treatment plan that they will actually participate in and ultimately it enriches patient care, and I think she hit the nail on the head there. We all want our patients to follow the prescribed treatment plan right, and it should be a collaborative decision-making process. However, if there's no empathy, if you're not listening to your patients, if you're not acknowledging the struggles and the difficulties, or maybe even, like Courtney said, you're not mourning the loss of certain foods that they used to enjoy now they can't, if you're not doing that and you're just cold and you're just handing them a folder and say go, bring this to check out. They'll print you a diet that you need to follow. They're really gonna be very unlikely to follow that treatment plan because it wasn't delivered to them in a compassionate way. And I hope that that review of the MedScape article was just a reminder for you to be empathetic Of course, empathetic to ourselves, because I think that's where it must start from. We have to have compassion and grace and forgiveness and encouragement to ourselves before we can give that away to anyone else. And if you've been listening for any amount of time, you know that this is my goal for you guys as clinicians to become a compassionate, confident clinician when discussing nutrition. And so empathy is huge and I really hope that throughout the discussion today, from hearing Courtney's story personally and also hearing how she interacts with her patients professionally. I hope that you will try to be a more empathetic clinician, not only when discussing labs, imaging, diagnosis, but also when it comes to nutrition, because it is a huge lifestyle change that we're asking our patients to be committing to. Thank you so much for listening. I don't even have words to express how grateful I am that you would choose to spend 30 minutes with me, so I'm really really thankful for you and I'd love to connect with you. You can find me on Instagram at examry nutrition. You haven't already. Please share this podcast with your colleagues. We all need to be reminded on practical things, but also on kind of the more human level, things like empathy and compassion, so I'd love if you could share this with your colleagues. Well, as always, guys, let's continue to make our patients healthier, one exam room at a time. I'll see you next time.