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“Swallowing Struggles- My Life with a Diva Esophagus - One Patient’s Experience
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It's wonderful to be here. Thank you all for joining us and spending the day. When we were putting the topics together here, I think one of the things that intrigued me was working with my colleagues here to say, hey, this is a little bit about how I approach diet therapy within our GI practice, with our APPs and GIs and nurses and psychologists. And, you know, what do I want you to know about a couple of clinical pearls for working with your patients, but also let's say that you don't have a robust nutrition offering for your EOE patients and you're interested to get that started. I'd love to sort of give you some guidance and answer some questions on that today. These are my disclosures, none of which are relevant. So here's our beautiful Eosinophil. Thanks to our pathologists for highlighting this image. And what I wanna talk today, if we look at it in a few stages, we're gonna talk a little bit about the history of diet therapy and EOE. I'm gonna walk you through just some brief elements of doing a nutrition assessment. Going back to Dr. Hobson's talk is sort of identifying some of those individuals who may be more nutritionally compromised. We may want to make sure that we're not starting, let's say on diet therapy until we improve their symptoms and their nutritional status. And we'll really look at sort of the history and the course of diet therapy offerings so that you can be guided as to what to pick and how to start. And of course, we'll go through what some resources are that can guide you in your clinical practice. The treatment team for those of us working with EOE and non-EOE agents has grown exponentially. I think we appreciate when food is involved. It's requires more than just our GI approach that we need in our brain gut specialists, our psychologists, we may need feeding therapists, dieticians, nurses, pharmacists, especially for our highly atopic individuals that may be on multiple medical therapy and really looking holistically at how we approach the treatment of these patients. Today, of course, we'll center right now on the nutritional treatment of these patients. Our global GI nutrition goals, for me, I really want to assess someone's baseline diet and their allergen load. You know, if I have a patient, for example, that just had bariatric surgery, I've had these patients and they are drinking tons of protein shakes that are milk-based and that's sort of the predominant thing in their diet, it may give me clues about things that I want to alter as opposed to doing a full six-food elimination diet. I also want to see if now is a good time for diet therapy. I mean, sometimes patients will meet with me to say, I'm considering my options. Maybe I want to do diet, maybe I want to do meds, but I've got to know what it is that I'm going to be eating and just logistically, can I swing it? We also want to make sure that we are improving symptoms and preventing complications. If I have a patient who's interested in diet therapy, but they have a very narrow caliber esophagus, I'm going to want to get them on medical therapy, possibly also with dilation until their esophageal diameter is a little bit safer for us to be able to stop therapy and experiment with diet. Because of course, there's always the chance that diet isn't going to be able to be the primary treatment therapy for your patients. So just a few little guide points on assessing your patients nutritionally. This is obviously very different when you work with pediatric patients. There are other growth parameters. I think one red flag for pediatric patients on the growth, there's a few, we want to make sure they're growing, not falling on that growth curve, that they're continuing that curvy linear. Doesn't matter if they're in the fifth percentile, as long as they've got that arc to their growth. Of course, parents' feedback on them being picky eaters, we want to see that they're developing from an oral motor perspective. In adults, we look at percent weight loss. So if someone has sort of self-restricted feeding resulting in weight loss, and they've got all these high nutrition impact symptoms, heartburn, they feel like food is going down slowly. Our colleague, Dr. Brano, has published on ADAPT, which is an acronym for sort of some of these adaptive skills that our EOE patients are very good at, chewing slowly, taking small bites of food, using water to sort of get the food bolus down. So some of these nutrition impact symptoms are also important to consider in the baseline assessment. When we think about the history of EOE, it really began with this Sentinel study by Kelly and Sampson in the early 90s in a pediatric population of 10 kids, previously refractory GERD patients that were put on an elemental formula. And if you haven't used elemental formulas, these are infant formulas that are enzymatically pre-digested to be completely broken down, GI friendly, and the gut doesn't really recognize them as an allergen. Those individuals improved, and this was the first sort of clue that food allergies may play a very important role in EOE. If we look at from the mid 90s to now, one of the goals, of course, has been to simplify the experience for our patients. You know, how do we get people the best clinical bang for their buck with the least amount of restriction? Amir Kagawala at Lurie Children's and other colleagues at other centers around the US and in Europe began studying in the early 2000s, avoiding the most usual suspects, the six food elimination diet, dairy, wheat, eggs, soy, nuts and tree nuts, fish and shellfish, and were able to report improvement in close to 70% of pediatric patients. The problem is that diet was very restrictive, and so in both pediatric and adult patients, the goal was to continue to simplify once we learned more about what the common triggers were, and that culminated with a randomized multi-center intervention trial comparing single food, which was dairy elimination, to the six food elimination diet, also known as the SOFEED study, and that was part of the Seegers Consortium, and I'll show you a slide or two on that in just a few minutes. So when we think about what diet should I choose, what should my course be, I'd like to walk you through a little bit of the outcomes and where the current recommendations are, and part of this also really falls back to the shared decision-making. I think looking at outcomes and efficacy is really important because we've got to present these options to our patients so they can help choose what feels like the right next step for them. So the AGA and joint task force guidelines on the treatment of VOE show all, show empirical elimination, the six food elimination diet, elemental diet, which is just using formula, the most restrictive, and a test-directed or allergy-directed elimination diet. Empirical elimination of the usual suspects is the most productive in terms of improving outcomes and also sort of the least restrictive compared to something like elemental. The recommendation from the joint task force is to do the six food elimination diet over no treatment at all, although guidelines are evolving to try to simplify this. We do a lot of six food at Northwestern, and we're really also starting to do more simplified diet approaches. Let me go back. Sorry, I got a little clicker happy there. So just highlighting again, these are the big food groups that we're removing, and it's worth saying that 50% of the protein that Americans eat comes from cow's milk protein. So removing cow's milk protein derivatives is actually a considerable piece of dietary elimination for most individuals. As a dietitian, it's important that we focus on not just what we want people to get rid of, but also what they can eat. So we spend a lot of time, a lot of resource development on what we want people to eat. So generally when you're doing a six food elimination diet, the foods you can eat are lean proteins, chicken, beef, pork, very difficult to do in a vegetarian patient, although certainly we can rely on legumes and gluten-free whole grains, and then of course, wonderfully, lots of variety of fruits and vegetables. Certainly challenging in people who have some texture issues and maybe have a limited tolerance or a limited interest in eating fruits and vegetables, but we really try to focus our materials on what people can eat. So let's talk about the timeline of food reintroduction when we do a six food. And again, not that I'm pushing six food, but before we talk about more simplified approaches, it's really important that we sort of highlight the time and the procedures involved in a six food elimination diet. You may have patients who are IgE allergic to foods on this six food group. They may have issues with eggs and nuts. And so thinking about a dairy elimination diet, or other foods in this six food group is an important consideration. We're not going to add back their anaphylactic foods, but important to think about procedures. So here's how we do it. We remove, let's say, all of those foods, all of those six food groups, and we do that baseline endoscopy to see if the diet worked. We look at the clinical look of the esophagus, the EREFs, as well as the histologic improvement. And these are important markers for people, especially as we gauge response to diet, because occasionally we'll have a patient who will say, you know, I accidentally ate my kid's mac and cheese. We'll talk more about that in some slides to come. You know, when do we push back the endoscopy based on contamination versus sort of powering through and accounting for that in the findings of the endoscopy. And just to sort of jump in there, I think that sometimes if someone has a small dose contamination, what we may see is a bump up in eosinophils, but the clinical look of the esophagus looks good, inflammation is controlled, and so forth. So if diet therapy worked, then we start the process of reintroducing things. We run the odds here and cluster up two of the lower risk foods. So we know from our data and other centers that fish and nuts are pretty low triggers for our patients, about 10%. And so we'll add two weeks of fish and shellfish, and then layer onto that two weeks of nuts and tree nuts, and then we'll do another endoscopy. If that looks good, then we'll move on to soy and eggs. When we get to dairy and wheat, because they're such big triggers, we have a tendency to do those as single food trials. In our highly atopic patients, we may do multiple food trials as single food trials. So going back to shared decision-making, when you're presenting options to your patient, see that this is at the very least 18 weeks. And so we often tell people there's somewhere between four to six endoscopies, and close to six months worth of intensive treatment for us to really identify these food triggers if this is the route that we go. We've mentioned before that at least 60% of patients, if not more, are allergic to one to two foods. So the big push in the literature, as you know, is to start with a more simplified approach, sort of a step-up approach, starting with eliminating one or two foods, and letting patients know this is the efficacy rate of starting with a two-food elimination group, and then we'll work our way up to, say, four food or six food if this doesn't work. We don't have a lot of great data, though, on how this approach, top-down versus bottom-up, impacts quality of life. So I would like to talk about the findings of SOFEED study. So SOFEED was that single food versus six food trial, and I was thrilled to be part. Northwestern was one of those centers, and I was one of the dieticians on the study, so I really got to see the behind the scenes there. It was a multi-center trial where people were randomly assigned to single food, milk only, or six food. And there were a few little caveats that might differ from clinical practice, like if someone got contaminated, we wouldn't hold them up from their endoscopy, we wouldn't push back the endoscopy, we would just sort of account for the contamination, so that may have affected outcomes. But what you see here is that there's very good comparison in outcomes, histologically, between the milk only and the six food. To get to really good improvement in histologic outcomes, less than one eosinophil per high-power field, that's where we see the six food is sort of the winner. We also see that when it comes to histologic improvement, endoscopic appearance, that really the diets comparatively produce the same outcomes. There are some nuances in sort of when you would do a six food versus a single food, but the findings of the papers published, and I understand some of the guidelines coming down the pipeline, are that a single food elimination diet is a reasonable place to start. But I think the holistic discussion needs to be there about if milk isn't your trigger, then we want to consider these other foods. So just going through what is known currently about the efficacy of varying levels of restriction and their outcomes. We see the levels of efficacy here, and I will say that when it comes to two food, gluten and dairy, that's 45% efficacy has been published. Most of our patients are choosing to start with two food, not just single food. We, in our group, we have actually seen patients adhere really well to the diet, and maybe because we have a lot of support for them, but also because there's a selection bias in people who choose to do diet therapy. We've been able to show that close to 60% of people who completed the six food and were able to identify their one to two triggers have been able to maintain their wellness on that. Lucendo's group also was able to identify that people who were in remission because of diet therapy, when they go back and survey them three years later, they're still able to maintain that wellness and their esophagus from diet therapy. We did also see in this study, by the way, that people, as you can imagine, who had more food allergies or who did the six food and weren't able to identify their triggers or maybe were partial responders, were patients that were more likely to have stress and anxiety over the diet therapy approach. So sort of like, if it works, you're happy. If it doesn't work, you're not happy. One thing that I will say in this slide, this was where we went back and we reviewed the records of over 200 of our patients that went through the six food elimination diet to look at who was a responder, who wasn't a responder. And I think the thing I wanna really point out here is just that when we had patients that were partial responders or who didn't respond to six food, we actually clinically gave them the option to do the diet again. And these might be for patients who said, you know, I had some contamination here and there. I wasn't really very adherent with taking my PPI. I'd like to try it again. Or for people who are like, you know, I think I've got some other food triggers. And in that case, we can certainly talk about that more, but we would go on to eliminate things like corn and legumes. And we found that we were able to capture more responders. So sometimes doing another round of diet therapy with a few tweaks may make sense for your patient who was a partial response first time around. Okay, so how to start. First, I think it's really important to have a guided clinical discussion, you know, shared decision-making about the feasibility of the diet, looking at lifestyle factors to really set the patient up for success. I am biased because I'm a dietitian, but I think, you know, APPs get, there's a lot of pressure on our advanced practice providers to do it all, be the clinician, be the dietitian, and really to sort of juggle and wear a lot of hats. I think it's important to pull a dietitian into your team if you don't already have one. We're certainly happy to answer questions about billing during the open Q&A. And even if you don't have a full-time dietitian advocating for maybe an inpatient dietitian who can be paid to work like one day a week in an outpatient GI clinic, there's lots of training resources out there for EOE and diet. And so even if they're not an eosinophilic specialist, they can become competent pretty quickly. I also think it's important just for us to sort of take this dive in the next few slides on like food. And I spend, you know, I get an hour with my patients, I spend a lot of time talking about what's in the food, how do we put it together, where do we bob and weave around potential contamination? So these are just a few of like the hidden triggers that might pop up in your diet. One thing I'll mention is that, you know, most people know when they're avoiding dairy that they're avoiding milk and yogurt, but they forget about like the cross-contamination from a shared fryer. And all restaurants forget that butter and ghee are technically dairy and that will equally contaminate your patient. Of course, I'm thinking about dietary balance. You know, Oreos happen to be dairy-free, but that's sort of not the dairy-free diet that we're looking for. So it's not that people have to be perfect eaters, but we're really looking for diet balance, looking for a variety of textures, nutrient density, and giving people go-to guides on what to eat and what to order and how to navigate this socially. It's important that, of course, I'm trying to keep other parts of our patients well. Many of our patients, you know, two thirds of the U.S. is overweight and obese and may have concomitant comorbid conditions like diabetes and heart disease, for example. And so I'm often thinking about diet quality as part of the, you know, not just getting rid of the trigger, but also then here's how I want you to eat to make sure it's healthy. You know, many adults are sort of like, I hope I lose weight. That's why I want to do the diet fair. So it's really important for adults, at the very least, to be focusing on this. And these are just a couple of the foods that we typically stress and build into the diet, keep the focus on antioxidants, for example. I, you know, load my patients up with resources, snacks, menus, shopping guides, dining out guides, conversation starters to have with family and friends about why they're doing the diet. And I think these are really important. We see from the literature that this optimizes patients, helps to minimize stress in patients and also helps to optimize their experience. We do talk a lot about dining out. You know, interestingly, almost 20 years ago, we started doing the six food with our adult patients. And at the time, you know, we didn't know what we didn't know we were learning as we went along and we didn't let our patients eat out. We didn't let them drink alcohol. I mean, those early patients, you know, maybe in some ways that's why our data was so good, but we certainly did it at the expense of our patients' quality of life. Now we've gotten a little more savvy about how to help our patients navigate with dining out, but restaurants do the best they can, but the more that someone dines out, certainly the more opportunities there are for cross-contamination. If the diet is ineffective, we're always thinking about contamination. I don't really use the term, you know, compliance because sometimes, you know, patients will say I blew it. I just couldn't handle it anymore. I had to like have a cookie and they will tell on themselves. But many times people attempt to do the right thing and find out sort of after the fact, like, boy, my chest was burning. I wonder if something was in the food that I had in the restaurant. The other thing that's important is maybe new allergens were introduced. You know, maybe someone really does have an issue with legumes or chicken or things like that, that we've sort of amplified those foods on their diet. And, you know, talking about PPIs, I know that PPIs are a treatment for EOE and it's no longer required to do a PPI trial, but oftentimes if people, you know, don't do the diet with a PPI and they're partial responders, we will try to fold that in and do another repeat and see if their outcome is different. I do want to revisit this topic that came up earlier of ARFID. It's an excellent thing that we are, for to be on our radar. ARFID is an eating disorder that is both sensory as well as symptom avoidance. And we see this a lot in our IBS patients and in other conditions as well. I mean, I think no condition is really immune from developing ARFID, but with the case study that was discussed earlier, it's just an excellent thing to think about in your patient who maybe has quiet disease, a good diameter esophagus, and their eating is really limited because they're having a lot of symptoms. That's where we try to bring in our behavioral medicine colleagues and really try to build back that avoidance hierarchy to help get over food fears or to go after symptoms in other ways. So just a few resources for clinicians before moving on. Very excited to, you know, scream it from the mountaintops that ASGE is developing this trainer, training of the trainers program. And myself and many other colleagues were involved in developing the curriculum. That's excellent. There's two nutrition modules, one on nutrition assessment and sort of the nuances of it, and one on selecting the right diet. And again, if you are new to having a dietician in your group, but you're interested in having one get more up to speed on EOE and nutritional therapies for EOE, these would be great resources for them as well. And just one or two more slides here to wrap up. The Academy of Nutrition and Dietetics, along with the AGA has partnered also for this dieticians in gluten and gastrointestinal disorders. This is sort of a mouthful of a group, but the goal was for us to provide physicians and clinicians who are members of the AGA with resources, introductory resources, all of these different GI conditions. They're meant to be downloaded and printed. We have some on EOE, we have an upper esophageal working group, one that's in there as well. So this is a great thing to augment in your clinical practice as well. And so in summary, you know, obviously shared decision-making is really important in diet because so often we see people say, well, just cut out dairy and then we'll repeat the scope or let's cut out these foods and maybe there isn't a follow-up scope. So I really want to highlight the importance of being very systematic about what we do with diet and that follow-up endoscopy. We know food allergies play a role in not only the pathogenesis, but also maintaining that disease activity and removing food allergens does play a role in treatment, but it's a role that our patients have to pick. Right around this time of year is where we say to our patients, we would love for you to do diet. Let's pick this back up in January. So we talk now about what we want to do. We get our scope scheduled and we go live on January 2nd. And then we have to consider, of course, giving our patients the necessary resources so that they know not only what they need to cut out, but what it is that they actually can eat, how to read a label, how to be social and be successful. So thank you very much. And with that, I'll turn it over to my colleagues for the next talk.
Video Summary
The speaker discusses the approach to diet therapy for Eosinophilic Esophagitis (EOE) in a GI practice, emphasizing a collaborative approach with various specialists. The talk covers the history of diet therapy in EOE, the importance of a nutrition assessment, and strategies for introducing diet therapy. Key points include the evolution from elemental diets to more practical two-food or single-food eliminations, guided by shared decision-making with patients. The speaker emphasizes the importance of assessing baseline diets, allergen loads, and ensuring patients are symptomatically and nutritionally ready for dietary modifications. The role of dietitians is highlighted as crucial in developing practical dietary plans and managing social and psychological aspects, such as helping patients navigate dining out and addressing potential food anxieties. Support is provided through resources like the ASGE training programs and collaborative efforts with dietetic organizations to streamline nutritional interventions for EOE patients.
Asset Subtitle
Bethany Doerfler, MS, RD, LDN
Keywords
Eosinophilic Esophagitis
diet therapy
nutrition assessment
dietitians
elemental diets
ASGE training
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