Dr. Ron Falk invites Dr. Evan Dellon, internationally recognized expert of EoE, to talk about the signs you or your child may have the condition, recent FDA approved treatments including budesonide and dupilumab, and on-going research in the field.
Dr. Dellon is a professor of medicine in the UNC Division of Gastroenterology and Hepatology and an internationally renowned investigator and physician who has spent his career studying and taking care of patients with EoE. He is also the director of the Center for Esophageal Diseases and Swallowing and cares for patients from across the nation, with EoE.
Topics Covered
00:00-01:21
Dr. Falk: Hello and welcome to Season Two of the Chair’s Corner from the Department of Medicine at the University of North Carolina at Chapel Hill. I am Dr. Ron Falk, chair of the Department and the host of this podcast where we’re dedicated to empowering patients like you with knowledge about your condition, enhancing your quality of life every step of the way, each and every day.
Dr. Falk: Today, we invite Dr. Evan Dellon, who’s a professor of medicine in the UNC Division of Gastroenterology and Hepatology, to talk about a really interesting condition called eosinophilic esophagitis. Try saying those words quickly. Commonly referred to as EoE. Dr. Dellon is absolutely an internationally renowned investigator and physician who has spent his career studying and taking care of patients with EoE.
In fact, he’s the director of the Center for Esophageal Diseases and Swallowing and cares for patients from across the Southeast, I would actually suggest across the nation, with this EoE condition. So welcome Evan Dellon.
Dr. Dellon: Thanks so much. It’s a pleasure to be here.
01:21-03:05
Dr. Falk: So, before we really delve into talking about what’s new and the treatment or therapy of eosinophilic esophagitis, since the FDA just a few months ago approved a new treatment, let’s talk about what this eosinophilic esophagitis is all about. What is it? How common is it? When was it first recognized?
Dr. Dellon: Absolutely. So EoE is an allergic condition of the esophagus. And often I make the analogy that you can think about it as asthma of the esophagus. And it’s a condition that’s named because a type of inflammatory cell. The eosinophil is in the esophagus where it shouldn’t be, and it has some allergic properties that lead to the cause of the condition, and that causes an allergy problem in the esophagus.
Now, in the field of GI EoE is interesting because it’s a relatively recently known disease. It’s only been described about 30 years. And at the time of its initial description, it was incredibly rare, case reportable in different journals. Over the last two decades, it’s increased in how common it is very rapidly, actually far outpacing how much people know about it and how much people are looking for it.
So it’s a real rise in the incidence of the disease, which is really interesting and something that we don’t see with a lot of new diseases. And so right now we think it’s about one in a thousand or possibly even more common than that. EoE previously was really thought again to be a rare disease. But now at least here, we can have several new diagnoses every week with additional patients being referred in.
03:05-05:41
Dr Falk: So how do you know if you have it? What what’s the first tip off
Dr. Dellon: so many patients, particularly adolescents and adults, the main symptom is trouble swallowing and the tricky thing there for patients is really understanding that trouble swallowing, food going down slowly, food sticking in the chest is not normal. What I hear again and again is that patients figure that they have a, they took too big of a bite or they’re eating too quickly. They’re not just not chewing their food good enough. And so they adapt their behaviors to minimize their symptoms.
And even though they have this trouble swallowing, they become accommodated to it, sometimes even subconsciously. And that can actually prevent them from coming to care with these trouble swallowing or dysphagia symptoms for many, many years. And so that is really the trouble swallowing is really the most common symptom.
Sometimes we see heartburn or chest discomfort and it can masquerade as something far more common, like reflux disease. And you have to sort that out a little bit. And then the other interesting thing is in younger children, infants, in school age children, the symptoms are totally different. The youngest kids may not grow well, they may not eat well, or they may not progress to other kinds of foods or they may have abdominal pain or vomiting and so they have those kind of symptoms. And then these trouble swallowing symptoms don’t appear usually till later on.
Dr. Falk: So if you are a parent of a young adult or a child or an adolescent, as you described earlier, how do you not overreact but yet react when the concern of, ‘hey, wait a minute, my kids complaining that they’re not swallowing right’ rather than blowing it off, what other questions do I ask them?
Dr. Dellon: So, you can look for certain clues to behavior about whether, you know, first of all, how common it is, if it’s a one-time thing and it never happens again, you know, that’s sort of a different thing. But if there’s a pattern, if they tend to be a slow, picky eater, they’re the last one at the table. If they’ve never learned to swallow pills.
If you notice that, you know, everybody at the table drinks one glass of water at a dinner and they’re going through three glasses and sit before and after every bite, if they’re just chewing their food really thoroughly into mush. Those are subtle symptoms that there is trouble swallowing and that they’re accommodating. And of course, if they start getting foods stuck more frequently, that’s something that you want to bring to the doctor’s attention for your kids. And if it’s happening to you, bring it to your doctor’s attention yourself.
05:41-07:23
Dr. Falk: So especially for an adolescent or really anybody, this must have a remarkable impact on the individual’s life. First of all, you’re not going to be able to get their food down, what are the social impacts?
Dr. Dellon: Yeah, they’re really quite profound for some patients. And it’s interesting, when I first see a patient, they often focus on the more recent events. I was in the emergency room with a food, food, food stuck or, you know, this is what’s happened the last couple of years. But often I ask them or thinking back, you know, knowing what you know now, when do you really remember things starting? And frequently someone may say, ‘you know, in elementary school, a hot dog got stuck and I never thought about it.’ Or, you know, I’ve always been very careful. And when you start getting into that, there are people who are afraid to eat in public. You know, they have to know where the bathroom is. They don’t go out to business lunches or dinners, and if they do, they may not order food or they may only order very soft food.
And if you think about how frequently social events involve food, there can be a pretty big impact. If you can’t enjoy it regularly.
Dr. Falk: Why close to the bathroom, they do have vomiting it out or.
Dr. Dellon: Yeah, so if the food gets stuck, patients often want to know what their strategy is and rather than often they stop eating, people will frequently adjust their position, try to drink some fluid, but if it’s really caught, they often will go to the bathroom and sometimes bring the food up.
It’s also embarrassing if it happens. And so even among people who, when it happens at home, if you have young kids or other family members, it can be, you know, distressing to them to see to see you have symptoms like that. So that’s where they often will understand where they can go to try to do that.
07:23-10:25
Dr. Falk: For us to think about the therapy that we’re going to want to talk about, we actually have to understand a little bit about the cell that you described that really is in the wrong place at the wrong time. What is an eosinophil? What is it?
Dr. Dellon: That’s a great question. And so, the eosinophil is a normal white blood cell and it’s a normal part of the immune system in everybody. And it’s normal to have them in low levels in your blood and even in low levels in the stomach and intestine and colon. But in the esophagus, it’s never normal to have them there.
And so when we start seeing them there, most of the time now, it is related to eosinophilic esophagitis. There are other conditions that sometimes can cause eosinophils to get into the esophagus, particularly GERD, which gastroesophageal reflux disease. And that’s something that, you know, I as a doctor have to work out for different patients. But in general, it’s a marker of an allergy problem in the esophagus.
And what’s interesting is, we’re learning really in the last couple of years, even though the name of the disease is EOE, the Eosinophilic isn’t the be all, end all. It’s the most prominent cell that we can see when the pathologists normally look at biopsies under the microscope. But it turns out if you look carefully or do other stains, you can see many other kind of cells.
And so there’s a lot of different in different inflammatory cells, different inflammatory processes. And different changes to the esophageal lining that happen in the condition. And what we think is that the longer you have this inflammation in the esophagus without treatment, the more likely you are to get scar tissue in the esophagus. And when you get scar tissue, that’s when the esophagus starts to narrow, and foods can get stuck.
And in some ways, that’s why the symptoms may differ between kids and adults. The kids don’t have symptoms that long. It’s very inflamed. They have pain and vomiting. But if then that continues for years, decade, you get to a place where the esophagus is really scarred down and an adolescent or adult is going to have food sticking.
Dr. Falk: So, inflammation in the esophagus before scar is more pain, the swallowing problem, if it’s not pain, it could be just because. Well, the unfortunate consequence of the esophageal wall scarring. Is that right?
Dr. Dellon: That’s right. That’s right. And the other thing to mention is that these symptoms, you know, heartburn and chest pain and trouble swallowing or dysphagia, they are not specific for EoE. In other words, almost any condition of the esophagus can cause those three symptoms. And so you can’t tell just by symptoms that, hey, this is EoE as opposed to any other condition.
Dr. Falk: So you have to have a biopsy and endoscopy and take a small piece of tissue and look at it under the mic.
Dr. Dellon: That’s right. For diagnosis right now, in addition to the symptoms and seeing what other conditions the patients have, many have other allergic conditions. We do endoscopy, upper endoscopy and biopsy to not only confirm the diagnosis, but make sure there aren’t other things going on.
10:24-12:08
Dr. Falk: So what’s causing all of this and why on earth is this condition happening more frequently? What are we being exposed?
Dr. Dellon: It’s really the million-dollar question and it’s certainly very interesting. And in general, all allergic diseases are increasing. And if you compare now to 30, 40, 50 years ago, the proportion of everybody, there’s just a lot more allergic disease.
And so what you see seems to be rising more quickly than those other conditions. There are probably changes in the environment. Now, EoE is thought to be a food allergy related condition and in the majority of patients. So, there is a question of whether changes to the food that we eat are responsible for this. There’s obviously been many changes over the last several decades to food, but there are also environmental changes, potential packaging, changes to our food contaminants.
There’s some evidence about things that change early in life, like we’re all growing up in to clean of an environment and so our bodies aren’t becoming tolerant to normal things in the environment. So it’s likely a combination of all of these. And then you add that on in the esophagus, there may be issues with the lining of the esophagus being a little leaky and letting allergy factors into the lining of the esophagus to trigger EoE that really shouldn’t be there otherwise
Dr. Falk: it could be anything that’s going down the hatch because it could be food, it could be something you’re drinking, it could be almost anything is what you’re saying.
Dr. Dellon: That’s right. Even environmental allergens, pollen sometimes can go down and trigger it. But in a given person, it can be quite difficult to understand what the initial cause was because, again, people have years of symptoms before they’re diagnosed.
12:09-19:28
Dr. Falk: So the cool new opportunity is, is that now there’s some interesting targeted therapies, drugs, that have come online that really offer some hope. Talk to us about these new options
Dr. Dellon: Absolutely. So it’s a really exciting time. I think there’s been a huge amount of knowledge gained about what the underlying causes and allergic factors that are responsible for early and now we can target treatments to them.
There’s several general treatments. I may just say a word about how we approach treatments. Some people want to go ahead and figure out, are there foods that cause they’re early and that’s a reasonable option. And we have ways to remove certain foods from the diet and test to see whether people are better with those foods out of the diet without medicines.
And then on the other side, we have several different medicines that we use, in terms of newer medications. Just recently there’s been a medicine called budesonide oral suspension that’s approved for use and budesonide is an anti-inflammatory steroid. And the concept here is that you’re swallowing pre-made formulation that’s sticky and sticks to the esophagus.
And I often liken this to say rubbing a steroid cream onto a bug bite. It takes away redness and irritation. And obviously we don’t have a cream that you can rub in the esophagus. But this is a good a good approach. And it’s taken a really long time. People have been using what I call home brews of this for decades. They would take the liquid version that you might use in a nebulizer machine for asthma that goes up into a vapor and actually mix it with, say, honey or some other thickener to swallow it.
But the problem with that, when I’m trying to treat patients is it’s very inconsistent and it’s a lot of work for the patients. And so you never know really the concentration or how much they’re getting. And so with this one, this is an approved standardized formula that was tested in clinical trials. And so it’s now available for patients age 11 and above to use.
Dr. Falk: So let’s just come back to something you suggested earlier. How often does food elimination, hundreds getting rid of or starting with a really, really bland diet and then adding foods back or starting with your diet and removing what you think are the triggers? How often does that work?
Dr. Dellon: Well, it depends on how strict you are with the diet. And we know that EOE is a food related or a food driven condition. Because if you if there’s studies where patients were given nothing but an elemental formula. So this is a liquid formula with no allergens, it’s just made of amino acids. And so if you give patients with you this formula and nothing else, 90% or more get better and they get better quickly within a couple of weeks.
It’s just not a feasible treatment for most people. And so instead there’s been this concept of empirical imitation diets. And what that means is we know on average what the most common food triggers are for patients. And if you remove them, depending on how many you get rid of, that gives you your chance. So, for example, dairy is the most common trigger for EoE, and if you just remove dairy, about 40% of people will get better.
And by better… they’re feeling better, the esophagus isn’t inflamed anymore and the biopsies show that the cinephiles are gone or have decreased substantially. Now, if you add, say, wheat to that, then you might gain five or 10% more. But then after that, you start getting you hit a wall, basically because it becomes really hard to do the diets. We used to do this diet all the time called the six food elimination, which is where you eliminate dairy, wheat, egg, soy nuts and seafood.
And so if you or listeners think to what you had for breakfast today, it’s you’re going to have a pretty empty plate probably if you eliminate all that stuff. And so, it’s hard to stick with People have to work with a dietitian and even there the best of the response rates are maybe 55 to 65%. So now we often recommend patients if they want to go for the diet elimination, start with dairy alone or maybe dairy and wheat and see how it goes.
Dr. Falk: So when would you then add budesonide this new oral suspension?
Dr. Dellon: Yeah. So you can add that either if a patient doesn’t want to do the diet elimination or if it hasn’t worked, but that that medication could be used right as soon as someone is diagnosed or it could be used after they’ve tried other kind of treatments as well.
Dr. Falk: So there are new injectable kinds of treatments that are available. Can you talk about those?
Dr. Dellon: Yeah, absolutely. So the medicine that was approved about two years ago now for EoE, initially in patients 12 and above and actually just again three months ago was approved for kids one year of age and above and 15 kilos and heavier is a medication that’s been approved for a number of years for asthma and eczema.
And it’s also approved for several other allergic conditions. And it blocks two of the factors that are heavily involved in causing EoE. And those same factors also cause asthma and eczema.
Dr. Falk: What are those factors?
Dr. Dellon: There are two cytokines or chemicals in the body called IL 4 and IL 13 and it is able to block both because it blocks the receptor for the IL 4, but that receptor is involved in signaling both IL 4 and IL 13.
Dr. Falk: And what is this injectable call?
Dellon: It’s Dupiliamab
Dr. Falk: Say that three times in a row.
Dr. Dellon: Yeah, and for EoE it’s a weekly injectable and the medicine is in the biologic class. So it’s actually an antibody protein that blocks this receptor. And so it was studied in a phase two and phase three trial program and it had very nice efficacy.
The majority of people who who took it, 60% or so, had their biopsies essentially improved with very low eosinophilic levels. They also had improvement in their symptoms of dysphagia and trouble swallowing and the endoscopic signs of inflammation that we look at improved as well. And that was across the board in the littler children and in the adults seeing those kind of improvements in the biopsy and in the endoscopy.
Dr. Falk: So now there are two, at least two therapies, that are aimed at EOE that you didn’t have.
Dr. Dellon: Yeah, but the one thing I would say about the Dupilumab is that it’s, it’s a medicine because it’s systemic and because it’s injectable, it’s typically reserved for patients who are a bit more severe, who often haven’t responded to budesonide or who haven’t responded to a different set of medicines.
The proton pump inhibitors like omeprazole, they can also be used early on in EoE. In the trials, the patients had EOE for about five years before they got the medication. More than half hadn’t responded to other medications and a number of them also had scarring in the esophagus and needed dilation. So it’s not the usual medicine, oh I just got diagnosed with you EoE, I should go right on Dupilumab.
19:28- 21:53
Dr. Falk: Are there other therapies coming down the pike?
Dr. Dellon: You know, there are quite a lot of therapies that are in clinical trials. And I think one thing about the field with EoE is it’s very collaborative. So, for me as a gastroenterologist, I work with allergists, I work with both adult and pediatric providers, I work with pathologists, dietitians and epidemiologists, as well as basic science researchers.
And what’s been nice is we can look at other allergic diseases and other inflammatory diseases like Crohn’s disease or ulcerative colitis, inflammatory bowel disease, or even some of the rheumatologic conditions. And look to see what medications may target common things in between the two different conditions. And so for example, here at UNC, we have multiple clinical trials open that are enrolling patients for new biologic therapies that target different cytokines and different factors or different cells besides the eosinophil.
There have been some very novel early phase studies looking at medicines that might induce immune tolerance or might impact trafficking of the white blood cells to the esophagus. We also have a clinical trial for diet elimination, where we’re looking at some new allergy tests to try to better predict what foods might cause EoE. The traditional allergy tests that are used are not very good at predicting EoE triggers at all.
So there’s quite a number of very encouraging therapies coming down the line.
Dr. Falk: So let me just repeat, if you think that you know what the trigger is, obviously try to eliminate it, try to stick to some approach to food elimination, if that doesn’t work, I guess then this oral steroid budesonide. Which I’m sure gets rid of eosinophils because steroids are good at getting rid of eosinophil. And then this new and drug, that’s an injectable. Really a tremendous advance in a very short period of time. Yeah, that’s wonderful.
Dr. Dellon: You know, it really is. And I would say up front, the discussion I mostly have with patients is do they want to do a diet elimination, or do they prefer to do a medicine?
Because the diet elimination isn’t for everybody. And some people are really interested in getting to the cause and other people are interested in it. But once they hear what’s required, they prefer to do a medication.
21:53-23:41
Dr. Falk: I’m a parent and I’m worried about my child. They have many of the signs and symptoms that you’ve described. They’re a picky eater. They’re drinking constantly. What’s my next step? Who do I talk to?
Dr. Dellon: I think in that case, and you know, for adults, too, for that matter, the first step is really talking to the primary care physician and going through the symptoms and expressing the concern about possible EoE. I think the things that providers will look at is also the chances that there may be EoE there.
Like I said, those kind of symptoms are not specific and can be caused by a lot of things. But if you take that child who’s a picky eater, who seems to be getting food stuck a little bit, and you add on that they have asthma and that they had eczema as a baby and that they’re allergic to peanuts, then there’s a really strong chance that they may have EoE.
Dr. Falk: But let’s say they don’t have that and they’re picky eater or you’re more and more concerned, you talk to your pediatrician, you talk to your internist, you talk to your family doc… and they’ve never heard of EoE. ‘What is eosinophilic esophagitis?’ And you say, ‘well, wait a minute, I’m worried that I have it or my child has it.’ What’s the step after that then?
Dr. Dellon: Then the step is really a referral to a gastroenterologist because the final common pathway for diagnosis is endoscopy. And many of those upper GI symptoms, the path for diagnosis is going to be an endoscopy. So you’ve got to get to that specialist for a referral and evaluation.
Dr. Falk: And if you’re an adolescent or you’re a younger human, a pediatrician, they’re a pediatric gastroenterologist as well as adult,
Dr. Dellon: There are, including right here at UNC.
Dr. Falk: Including right here at UNC.
Dr. Falk: If you wanted to leave patients with words of encouragement, what would they be?
Dr. Dellon: Well, I think we’re in a really exciting time for the condition and seeing the rapid improvements in the therapies in our approach to diagnosis, the rapid dissemination of information about the condition to gastroenterologists and allergists.
And now down I even think to primary care physician providers and pediatricians. It’s a very exciting time in the field. And so, you know, as a patient, you never want to have a diagnosis. But I think the thing to understand here is it’s again, coming back to that asthma allergy. It is a chronic condition. It needs to be managed.
But we have the tools to in most people manage it quite well. And many more tools are coming down the pike.
Dr. Falk: Great. Evan Dellon, thank you so, so much for joining us and providing a wonderful, optimistic view of how we can move along with eosinophilic esophagitis.
Remember, you are not alone on your health journey. Stay informed, stay proactive, and together as a community, we can make a positive difference in managing your health and well-being.
Thanks so much for joining us. Until next time, take care.