Hope for Food Allergies: Dr. David Stukus on Allergy Innovations and the Doctor-Patient Connection

Season 3: Strengthening our Support Systems 

Renowned allergist Dr. David Stukus joins Dr. Whitehouse to discuss the evolving landscape of allergy treatment and what it means for those living with food allergies. We discuss promising new therapies, advancements on the horizon, and what patients should know about emerging treatment options. Beyond the science, we also examine the importance of a strong doctor-patient relationship—what Dr. Stukus sees as the barriers to this and how open communication, trust, and collaboration can improve both medical outcomes and quality of life. 
 
Photo credit: Nationwide Children’s Hospital

Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme
www.kyledine.com

You can find Dr. Whitehouse at thefoodallergypsychologist.com and on Instagram (@thefoodallergypsychologist) and Facebook (Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist)
Email: welcome@dramandawhitehouse.com

Transcript

Dr. David Stukus: 0:00

there's more and more treatment options being investigated. So hold on to your hats. I mean, if we had this conversation once a year for the next five years, it's going to change. there are other treatment options that approach different pathways, We're learning more and more about, long term treatment? The future is very bright.

Speaker: 0:17

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence..

0:39

This season on Don't Feed The Fear. We are talking about strengthening and expanding our support systems. And what this has actually turned into for me has been, the opportunity to talk with a lot of the people who've been influential On our own allergy journey here in my house, and to thank them for the help and the support that they provided to me, At times, I have mentioned, and my guests have mentioned some of our discouraging and frustrating experiences with the allergists that we have worked with, but I also wanna make sure that I acknowledge how hard allergists are working. I've had some that were not a great fit for us,. But overwhelmingly, the experience has been wonderful with those that were a good fit for us, who were supportive and who guided us through different treatments to get my son into a good spot. So thank you to them. Thank you to all of the doctors out there working hard to keep us educated and safe. And in that spirit, I'm excited to share this conversation with Dr. David Skuas. DRAs or Dr. Dave as his patients call him, has devoted his career as an allergist to communicating evidence-based practices and best clinical practices to colleagues, medical professionals of all backgrounds, patients and the general public. You probably are familiar with him. He's active on social media. He uses his popular Twitter and Instagram accounts at Allergy Kids Doc to dispel myths and combat misinformation. DRAs is an academic allergist who holds multiple leadership positions in the American Academy of Allergy, asthma and Immunology, and the American College of Allergy, asthma and Immunology, he has been named a top doctor in pediatric allergy every year since 2015.

Dr Amanda Whitehouse: 2:15

I'm really glad to finally meet you. I've been following all of your content for a while. and it's nice to. Put a face to the name.

Dr. David Stukus: 2:22

Yeah. Well, thank you. And I appreciate you reaching out.

Dr Amanda Whitehouse: 2:25

You just stepped down from your podcast, right? And was it in December? So in here, I roped you back into,

Dr. David Stukus: 2:31

Oh no, if I could somehow find a way to like, Sustain a living being a podcast guest. I would love that. I love this.

Dr Amanda Whitehouse: 2:37

I think most of our listeners are listening to the content that's out there and they're probably familiar with you, but I don't think a lot of us know fully all of the hats that you've worn and the roles that you have played because there are quite a few. Would you mind telling us just a little bit more about all of the projects you've done and positions you've explored?

Dr. David Stukus: 2:57

Yeah. So, um, I am an academic pediatric allergist, uh, through and through, which means I work at a, at a major Children's Hospital, Nationwide Children's Hospital in Columbus, Ohio. And at my institution, I have several roles. My most prominent role is as the director of our food allergy treatment center, which means it is my job to make sure that our clinical operations are up and running and that we're always adjusting towards the latest evidence based. Practices. I do a lot of teaching in my role with different trainees at different levels. Um, I participate in clinical research. I like to write and publish as well. You know, over 100 peer reviewed publications out there, a dozen book chapters. I've written a couple textbooks and I love teaching. I mean, medical education is what I love. So every opportunity I get to either, you know, give grand rounds or give presentations at regional national meetings that I love that. Now that's just my day job. In addition to that, I've been involved with our national organizations. Uh, I'm currently the vice president of the American College of Allergy, Asthma, and Immunology, which means I'll be president in two years. Uh, I served as a social media editor and host the podcast for the American Academy of Allergy, Asthma, and Immunology for six years. And I'm, I'm on the executive committee for the American Academy of Pediatrics. So what this allows me to do is really help just learn how the organizations work, learn how they can help our patients, how they can help members and practicing allergists and physicians, uh, and contribute in various ways with committee work and things like that. And then I love working with advocacy organizations as well. So I, I try to do what I can, uh, but you know, it can spread you thin at certain times.

Dr Amanda Whitehouse: 4:32

It sure sounds like it. Is that why you stepped down from the podcast?

Dr. David Stukus: 4:36

That, yeah, it was time. I, you know, that was a great role. I cherished it. Um, it really changed my career in a great way, but I thought it was time for a new voice as well. I typically step down from major things. Once a year, uh, because I do a reassessment of my personal and career goals, my one, three and five year goals. And I realized that, you know, for that position I'd have to commit to another three years. I don't think that lined up with what I want to do three years from now. So it's time for a new voice and we found a great replacement.

Dr Amanda Whitehouse: 5:05

Yeah, it seems like you're always up for a new challenge and a new

Dr. David Stukus: 5:09

Uh, I love building things and creating things. I realize that that's what gets me motivated. Um, I don't want to just go in and punch a clock every day that won't satisfy me career wise. So yeah, that's that's I guess I seek out opportunities. You were also a member of the panel of Allergists who did the most recent round of updates for best practices and allergy practice parameters. I am sure I fumbled the name there. Yeah. You can't keep all the acronyms straight yet, right? So I was the, it's called the Joint Task Force on Practice Parameters for Allergy Immunology. So it's 12 allergists invited to join this amazing group where, we're tasked with basically going through all of the evidence and doing a meta analysis and systematic reviews and then coming up with, they're not quite guidelines, they're more here's best practices. and I was a member of that for five years, and that was one of those roles. I loved it. I voluntarily didn't re up for my second five year term because it, I was just busy with, stuff going on with their kids lives. And I, you know, the conference calls were interfering and it took a lot of time, but I would love to go back and rejoin that group in the future. But yeah, I was able to help write, um, some of the, the most recent parameters, uh, in regards to anaphylaxis and, uh, food allergy and, um, drug allergy and things like that.

Dr Amanda Whitehouse: 6:23

I'd love to hear what you think is most important for us to know about that.

Dr. David Stukus: 6:27

Where do we begin? Like no seriously the conversations I have with families in the office today. I wouldn't have had two years ago five years ago It's a bit much to say everything has changed with food allergy, but a lot has changed in regards to just our understanding of diagnosis, prognosis, individual risk, treatment, prevention. I think the biggest paradigm shift, there's a couple. One was when we started recommending that we introduce allergenic foods like milk, egg, wheat, soy, peanuts, tree nuts. Um, seafood to babies around four to six months of age and keep those foods in their diet consistently. That's our best path towards preventing food allergy. The advice before that, which is way outdated, was to avoid those foods. Uh, that was based on get best, you know, opinion at the time. But the evidence has evolved tremendously. Um, you know, with the pivotal leap trial that was published a decade ago that really showed us if we get the peanut in the baby's diet, it can help. promote tolerance and protect them. So that's a huge shift and that really still causes a lot of confusion with families and with pediatricians lately. The most updated evidence. And again, it's important for people listening to understand, you know, evidence changes and accumulates over time. And science is really messy. We rarely have definitive answers. Oftentimes, new research contradicts prior research. There's levels of evidence. Some research studies are really well done, and they can show things like cause and effect. Other studies really just show us a peek at what may be associated with each other. So the evidence surrounding eczema, as well as anaphylaxis r Um, in the last decade an really help families under to manage both of those

Dr Amanda Whitehouse: 8:09

It's interesting us out because there is s so much new information a doctor who's out there on social media myth busting and telling us like this isn't true. This isn't true. Here's the truth, but really it seems like Allergy and immunology is a field where there's so much gray area. As a psychologist I'm helping people all day long. You're you're in black and white thinking let's find the gray area so I was wondering if you could comment on what that's like trying to Give clear parameters when there is still so much in between.

Dr. David Stukus: 8:40

Yeah, I, I love that you brought that up. So I think we can really establish the diagnosis. So that's, that's the most important part of what we do in allergy immunology. Like what is your actual diagnosis? All of the symptoms that occur for allergic conditions, whether it's allergic rhinitis and you get itchy, sneezing in the spring, food allergy, causing hives and vomiting. All of the symptoms that occur due to allergies can occur for non allergic reasons. So there's a ton of overlap. I probably undiagnosed suspected food allergy in half of the families I meet at the first encounter. Everybody comes to me thinking their child has a food allergy, but 50 percent of the time we clarify. No, no, this is actually what their diagnosis is. which really impacts management. So we have to have a good diagnosis up at the forefront because that changes your entire life. And then with the gray area, it's actually a good thing because there's so much nuance involved and there's such individual variation. We don't want to be treating everybody the exact same way. That is such a disservice to everybody out there. Um, so it's hard because if you go on social media or the internet, you may, read people or meet people that are doing things one way. That may be completely different from the way that you should be managing yourself or your child. And that's okay. Uh, that's the message we want to send. It really is, should not be one size fits all it, whether it's asthma, allergic rhinitis, eczema, food allergy, everybody should have their own individual plan.

Dr Amanda Whitehouse: 9:58

Of those, 50 percent that you're dispelling, the suspected diagnosis, what's going on with them and how are you ruling it out? I understand, the basics that just a positive test can be a false positive But give us a little more detail on who might fall into that false positive category and why

Dr. David Stukus: 10:13

yeah two big buckets And parents are so good at you know, seeing when something's going on with their child So one it's natural for parents to associate symptoms with their child eating a food Kids eat all day every day, right? So if they start getting rashes or they start having symptoms, it's natural for them to think, Oh, well, they ate this that day or you know, they've been eating this and they're having these symptoms. So oftentimes that's more correlation and not causation. The second big bucket is, no, your child is having symptoms that we think are clearly linked with that food, but it's not due to an allergic mechanism. Sometimes it's more difficulty digestion, like intolerance. We see a lot of kids that get contact rashes on their face, uh, to things that don't cause allergic reactions, like berries and citrus and tomato sauce. Um, so yes, I hear you and believe you. You see these symptoms, and you associate with your child eating that food, but it's really important for me to figure out, are they allergic or not. Because if they're allergic, we need to know that because it puts them at risk to have more severe reactions potentially, but if they're not allergic, that means we don't, we probably don't have to avoid that food and we don't need to worry about things like carrying epinephrine and anaphylaxis and stuff like that.

Dr Amanda Whitehouse: 11:18

That's good to know. So how do people find a great allergist who can help them distinguish this? I know there are a lot of great doctors. There are also some of us who have gotten not the best information from some of our doctors. So how do we know?

Dr. David Stukus: 11:32

A large part of what I do is is I try my best to translate evidence into clinical practice, and that's I have that privilege when I speak at our national meetings, my colleagues and things like that. There's a huge lag. Um, so not all allergists are sort of up to date with evidence based practices. Not all medical professionals are up to date with medicine, you know, best practices. If you come to me with concerns about primary immune deficiency, I cannot help you. I've been so deep in the food allergy world for the last five years. I am not up to speed with that literature and that, that, that way to practice. So I'm not a good person for that sort of thing. Um, it can be difficult to tease that out through websites. Um, a lot of times you have to meet with them and see their approach. Um, In general, especially with things like food allergy and children, major academic centers are typically have more opportunities to offer things like oral food challenges and spend more time with people to kind of tease things out. That being said, a lot of community allergists are fantastic at diagnosing and treating this. Unfortunately, there's no easy way. One thing I can say is it's really important that you, making a point with a board certified allergist, immunologist, that board certification really makes a huge difference in regards to their level of expertise and understanding. Um, we live in a, in a society where anybody can hang a shingle that says they're an allergist, including folks that aren't even like qualified medical professionals. Um, so really vetting and making sure you know who you're seeing. And both of our professional organizations in the United States, the American Academy and American College of Allergy and Immunology. have a listing of board certified allergists in your area. So that's a good place to start.

Dr Amanda Whitehouse: 13:07

Okay, I'll make sure I link those in the notes for people who are looking and maybe want to consider, looking for somebody new. we're talking this season on the podcast about building your support system. And obviously I wanted you here to help us make the most of our relationships with our allergists. How do, how do we do that? How do we walk into the office with all these questions and all this information that may or not be correct and make the most of our time and our relationship with you?

Dr. David Stukus: 13:29

Yeah, um, so a couple of thoughts. One is have an open mind, because as I mentioned, half of the people that I meet come in convinced their child has an allergy and it's my job to clarify and, and, you know, educate them and, and as long, you know, most of them are open to that. Sometimes people get really upset because, you know, it's really These cognitive biases we have and they have this confirmation bias and they don't believe me and I do my absolute best to explain to them and demonstrate to them. And, um, and every once in a while, they're just, you know, that's their identity and who they are. So if you can have an open mind going in thinking, okay, here, here are my concerns. Um, so being able to clearly demonstrate that the history is extremely important. So we need to hear from you, like what's going on with you or your child? Um, you know, what are you associating it with? What's the timing of onset for any symptoms that are occurring? What are the symptoms? How long are they lasting for? Have you tried any treatment so far? Um, have you taken anything out of the diet, you know, things like that. Um, and then, you know, from a parent family standpoint, if you're meeting with an allergist and they're. They have their back turned to you, and they're just clicking boxes during that encounter, and they're not, you know, listening to you and answering your questions. I mean that, that you're allowed to seek a second opinion. Um, not everybody has the same sort of bedside manner and approach. So you really need to have a trusting relationship with whoever you work with. And I tell families all the time, I say, listen, here, you've, this is the approach I've spent time discussing this with you. If what I have to offer you doesn't quite gel with what you're looking for, there's no hard feelings. There's other allergists in town. Uh, so please meet with them and see if they can offer you something that you feel much better with.

Dr Amanda Whitehouse: 15:01

Another thing that I tell a lot of the patients that I work with, obviously, I'm not giving them any medical advice, but sometimes they're having confusion or questions about things. And I will often tell them, You're allowed to call your allergist and ask to come back in and have an appointment. Some people think, Oh, but we don't go back in for our checkup until next year. So I was hoping maybe you could confirm that because I think we feel a little intimidated.

Dr. David Stukus: 15:22

Oh, absolutely. All right, here's the, let's, let's get into it, shall we? So here's the dark side of medicine is all of us are under pressure to see more patients do more. We're getting paid less for what we do. Uh, the health insurance in the United States is a mess. So, um, it's natural. People want to be reimbursed for their time. Uh, I chose academics for a reason. I just have a salary regardless of how many patients I see or what I do and things like that. But if you're in community based practice, like you have to be able to support your business. Um, so for some allergists, if you are going to send them messages, um, it's a chance that they may actually bill for that time. They should tell you that up front and they should say, if we're going to have a 15 minute telephone conversation, this is what I charge for it. Uh, so that you can have a longer conversation and that you can, you know, they can actually, you know, get reimbursed appropriately for that time that they're giving you and their expert opinion. And that's okay, but they should be willing to do that. So you should feel comfortable to reach out to them and say, I have follow up questions. What's the best way to do this? Sometimes it's through the electronic health record. Sometimes it's through a telephone call. Sometimes it's through a follow up visit. I get people reaching out to me all the time on social media. Asking me specific questions or even more general questions, and I would love to help them, but I can't I'm not there I'm not their physician. Um, I don't know anything about them and it's it's Unethical for me to provide any advice whatsoever on social media, but I tell all of them the same thing Please reach out to your personal allergist with these questions and you know more often than not they say well They're not they're not willing to answer them and I said well then seek a second opinion like it It stinks that you have to do that and it's really unsettling But if that's the point that you're at to you're reaching out to some stranger on Instagram Like maybe you should rethink that relationship you have with your own allergist

Dr Amanda Whitehouse: 17:06

I agree. I think it's a tough balance because obviously none of us are experts and know better than you, but we also have to have that trust. And if it's not there, then obviously any, any advice that's coming or, or recommendations are going to, be regarded differently if we aren't feeling really comfortable with that connection and relationship.

Dr. David Stukus: 17:23

Absolutely. Yeah. So I encourage you and for your listeners like, yes, you are allowed to ask questions. You're allowed to reach back out. You don't have to wait for that next scheduled visit. Um, and if you're not getting that support that you need as much as you can find somebody else.

Dr Amanda Whitehouse: 17:37

Thank you. That's good to hear. you mentioned some of the challenges and restrictions don't apply to you because of the nature of your position. But what is for you the hardest part of working with patients?

Dr. David Stukus: 17:48

That's a great question. I think access to care, it breaks my heart, especially with, infants that have concern with food allergy because we, we now have an opportunity to offer treatment and we can really, you know, guide their management. But when I meet families that wait 2 months to see an allergist or 3 months, and they were given terrible advice and they've been living in constant fear. and their lives have been ruined and they stopped all their social engagements and stopped going to restaurants. That just breaks my heart. Um, so that, that limited access to care is really frustrating. Uh, I'm in a position where I can work on, on fixing that. And lately we've been able to see families within one, within a week, basically. A lot of times I can see them the next day. Um, so that is an ideal scenario. Um, but yeah, that's, that's been one of the hardest parts, I think.

Dr Amanda Whitehouse: 18:32

I do see that challenge a lot of times and I'm in a, not a big city, but a somewhat bigger area and people are waiting a long time and in the meantime, I think that's where we are on Google and we're on social media and I think then that's where the misinformation can come in. Would you agree?

Dr. David Stukus: 18:49

100%. Um, we also see it from actual board certified allergist. So this is where it gets really tricky is and you know, we in our specialty, you're going to get a range of opinions. Um, there's still a lot of allergists that are doing unnecessary panel testing. Uh, so you go in thinking that your child has a reaction to egg. and you walk out being diagnosed with 12 different food allergies that they don't actually have. Uh, we often see them as a second, third opinion and can clarify that diagnosis over time. But these families are living with this for months and months. Uh, or sometimes we miss a window of opportunity where we could have introduced the food and maybe prevent that allergy from developing. So that's the other really frustrating part is not only the misinformation online, but just the bad advice people are getting from their own medical professionals.

Dr Amanda Whitehouse: 19:31

I've heard a lot of people ask you, what's the most common myth that you hear? But I want to ask you, what do you think is the most dangerous or the most concerning misconception or myth that's out there about allergies?

Dr. David Stukus: 19:43

Oh, I think the most concerning one is, strict avoidance is mandatory. Even trace amounts can kill you. Um, so this is where all this started like 15 years ago when we didn't have a good understanding of actual risk from reactions. This is why we have peanut free schools. Uh, this is why we have peanut free playgrounds and sections of baseball games from a medical standpoint. These are vastly not necessary. Um, there are Children and people out there that are exquisitely sensitive to very small amounts, but they are the exception and not the rule. And we now have ways that we can actually protect those individuals through treatment options. Uh, so sending that message to families now, especially when, you know, we're doing threshold challenges and identifying, you know, many Children aren't even gonna react at all until they eat a certain amount. Um, that's just a really bad misconception that continues to sort of get parlayed and in the food allergy space, you know, this better than anybody fear cells. Right? So all the fear based messages, even from some advocacy organizations, that's what gains people's attention. That's how you get clicks and things like that. I mean, I don't, I've never sent a fear based message when it comes to food allergy in my entire career. There's no need. Um, it should be positive based messaging like we can help you. Uh, so yeah, I think that's the one that stands out. Yeah.

Dr Amanda Whitehouse: 20:57

I love that, and I agree about being careful what you're consuming, I've been careful about how do I even approach this on social media, and you've done it well, but I don't want to do that, any of those techniques where you're trying to gain followers, and, and that's what people are drawn to, is that, that fear based approach, and alarmist, messages, and so that's what we see the most of, and that's what gets passed along, and the, and the soothing, calming, great grounding information, like what you're sharing. Although people are listening to you. So you're doing something, right?

Dr. David Stukus: 21:24

Well, so I've and I've learned lessons along the way. Um, I I tried addressing. This is a really tricky subject So when we talk about food allergy fatalities, you know, thankfully they are very rare They're tragic every time they occur and we need to be aware of them But it's also well established though. That's not the reality for the vast majority of people that's Not something that's going to be, you know, part of their life. Um, and when you try to address that on a platform like social media, it's really hard to get in the nuance. And, uh, I, I personally upset a lot of people because it's a very emotionally charged subject in my effort to provide reassurance. A lot of people weren't ready to hear that. Um, and that's okay. And that was a lesson learned on my end of like, this is not the medium for me to do it. So I stopped doing that. If that's fine, I can do it when I'm in a room with people and I can read the room and answer questions. Um, I can do it one on one conversations, but, um, yeah, it. It's a tricky space out there.

Dr Amanda Whitehouse: 22:15

It is. I talk a lot to my patients and on the podcast too about, what's going on with our nervous systems and how when we're in a fear state, the blood flow is restricted to the areas of the brain that can receive that information. And so, I try to remind people, like, literally some of that information is not going to be absorbed by your brain if you're in this constant fear state and seeking out this scary information. I think people have to be grounded first before they're able to receive. The message that you're trying to send, right? We're not in that state when we're on social media.

Dr. David Stukus: 22:43

I, I, I love that, how you put that. You're right. So I, I, so I recognized years ago of people are just dumping their anxiety on me. And that's their emotional response to it. And I don't get upset with that. I, I feel bad for them. There's nothing I can offer. And I can just say I'm really sorry you're going through this. I hope you find the guidance that you deserve. Um, but oh my gosh, that's a, more often than ever I'm seeing that on social media. They're just using it as their diary or their psychologist. And then you get in the echo chamber because other people then climb onto it. And this is where I, you know, I like, I've been personally attacked by people in the food allergy community. Um, I've had to block people because then they come after me and now all of a sudden I'm the bad guy. Uh, when I'm really just, I'm just a conduit for the evidence. So this isn't Dave's opinion out here. This is, you know, this is the reality of it. But anyway, that's a different story for a different time.

Dr Amanda Whitehouse: 23:28

It's tricky though. I think, you know, from what I've seen and followed, you've done a good job balancing it. But for those who are wanting to hear that information and listening, I would love if you would share with us what you want to get across about those unfortunate, very obviously tragic and rare. Those those deaths that we're all afraid of every food allergy parent. That's our worst nightmare.

Dr. David Stukus: 23:50

Yeah, a couple of thoughts. One is, um, these aren't happening in young Children. So, you know, all the parents I meet that are scared to death to send their kids to school, those aren't the ones that are experiencing these sorts of outcomes. Um, it's almost unheard of in infants, toddlers and school age kids. Um, when you look at the data surrounding it, it's almost always going to be young adults, adolescents and, um, more often than not, they either don't have their epinephrine with them or they don't use it in a timely fashion. there's really, really scary scenarios where people get multiple outcomes. You know, treatment treatments with epinephrine, and they still have a fatality, but those really are extremely rare. So we can learn from that, right? So we can really help our adolescents and young adults know that, hey, let's let's continue to be mindful of this. Let's make sure that we're, you know, double checking things. We're going to restaurants. Let's make sure you have your epinephrine with you. Let's make sure you communicate with your social, your peer network and the people that you're dating and hanging out with. Like, do they know you actually have food allergies? Do they know that you have epinephrine in case you're in a situation? You know, um, These are such rare occurrences that it's hard to be prepared for it 24 7, but if we can establish good basic sort of, you know, habits that make sure we have these things with us, then that's how these get prevented. Um, so that's sort of the messaging is, you know, that we we know enough to know that there's

Dr Amanda Whitehouse: 25:07

and I get what you're saying. It's hard to be prepared. We can't anticipate and control everything. But at the same time, it's, it's pretty simple to be prepared, right? Just to always have your epinephrine and always have the people who know you know that you have an allergy and to use it right away. Is that, is that really the bottom line? As far as if we control that, we're pretty much going to be okay.

Dr. David Stukus: 25:25

I mean, for the most part, there's really scary stories of, uh, undeclared allergens from certain restaurants and stuff like that. There's nothing we can ever do to control for that, um, but you can have your epinephrine with you and use it if that situation arises. and now we have treatment options available. So that's the other thing is I really want people to understand, like, especially if you're exquisitely sensitive, like, we can help you. Um, there, there's no need to live in fear. Um, there are so many options available now.

Dr Amanda Whitehouse: 25:52

I agree, and I would love for you to talk about that because this is common in social media and our food allergy circles. Oh, my child is too sensitive for these treatment options. Right. And I felt the opposite. I have to do something for this kiddo So I was wondering if you could talk about that, how, these treatment options have gone from the gray area to now very widely used and well established. Right.

Dr. David Stukus: 26:12

Right. Yeah. So the two main treatments are one is being exposed to what you're allergic to and really, really small amounts. You have to do this under supervision. So there's oral immunotherapy. There's something, you know, therapy where you're actually getting very small amounts of the allergen increasing this over time. This is a daily therapy for years and years and years. is desensitizes your immune system. So you become more tolerant to smaller amounts. So this really is is very helpful for accidental ingestion of small amounts. It can increase your threshold and decrease your risk to have a severe reaction. Um, it's unlikely this is going to cure most people with their food allergy. That's really important, especially when we have well established immune systems and teenagers and young adults. If we start this early in life in the first couple of years, maybe we have an opportunity to help that. you know, usher that out and make it go away. But that's still, you know, being investigated. The second option is a medication called, um, Omalizumab Rezolair. And this is a biologic that we've used for over 20 years. And what this does is it targets the IgE antibody that causes reactions, So you don't have to eat the food, uh, because with OIT and SLIT, you actually have a risk of causing reactions every time you take a dose. We have ways of lowering that risk and making it more manageable. But with Xolair, you don't eat the food. And with Xolair, it's really cool because it doesn't care what you're allergic to. It's ideal for people with multiple food allergies. Oh, by the way, it's a great treatment if you happen to have asthma and environmental allergies as well. So now we're treating the whole person with one treatment. The downside is you have to get it by injection either every two weeks or every four weeks. And every treatment is roughly two to 3, 000. You want to make sure insurance covers it. yes, we can help you. We can protect you and you don't have to worry about those things. Are we going to get you to eat where you're allergic to? No, that's not what this is designed to do, but we can help navigate the world and make it much safer for you.

Dr Amanda Whitehouse: 27:53

Obviously a lot has changed. change since we were trying to navigate that. I had doctors kick me out of their office just for asking. Like I read about this thing called OIT How terrifying for me to be that scared. And then, and then for them to be shoving me along, just because I wanted information, you know?

Dr. David Stukus: 28:08

Yeah.

Dr Amanda Whitehouse: 28:08

So for those of us who are nerdy like me, can you give us It's a boiled down explanation of what's the mechanism, how does Zolair work on the body to prevent the reactions and address the allergies.

Dr. David Stukus: 28:20

Yeah, so Zola is a very specific treatment that binds to the IgE antibody that's in our body. So if you have IgE against a food, let's say just peanut, uh, then when you're exposed to peanut, the peanut actually binds to that IgE antibody, which is then attached to the allergy cells and it opens them up and releases all the chemicals that cause allergic reactions. Histamine is one of the major ones that can cause itching and swelling and vomiting and difficulty breathing and things like that. There's more, a little more to it than that. But what this, what this medicine Zolaire does is when you block up that I. G. E. Um, you need to be exposed to higher amounts of peanut in order to trigger the allergic reaction. Um, so that's how sort of it works. Uh, and it doesn't let you start eating peanut. Although when combined with small levels of oral immunotherapy, this is new research. Uh, part of the big trial that got Zolaire approved. Zolaire will make O. I. T. Safer. Uh, which makes sense because you're, you're sort of blocking that, that IgE antibody. when you stop treatment, you go back to being allergic. Um, that's just the way it works. So it's, uh, it's a long term treatment. even with OIT, if you stop treatment, the vast majority of people are still allergic and they can't, you know, they go back to having reactions. So that's important to understand as well.

Dr Amanda Whitehouse: 29:29

a lot of people have fears about the side effects they're hearing with Zolair. What would you say about that?

Dr. David Stukus: 29:33

Yeah, I don't know where this is coming from because, you know, it's, it's one of the few medications that we've had for 20 years. Like the safety track record is unbelievable. Um, there's a boxed warning on there that it can cause anaphylaxis, which we don't understand. How does a treatment for allergies cause anaphylaxis? We don't know. There's, there's, it's very rare and almost always it occurs in the first three injections, which is why we give those first three in the office. Uh, and then we can transition you to add at home dosing if you want. Some allergists prefer to give every dose in their office, which is fine as well. Um, yeah. Initially, like when I was doing my training to be an allergist 20 years ago, there was some concern that maybe Zolaire was associated with cancer. It turns out after studying it in thousands of patients, that was a statistical anomaly and it didn't pan out. Um, but other than that, I don't know where all these fears are coming from other than, um, you know, the zeitgeist. Fear

Dr Amanda Whitehouse: 30:22

of the unknown. I think, you know, that's always such a powerful thing with allergy life because so much of it's the unknown.

Dr. David Stukus: 30:28

Yeah, and and that's why we try our best to extract and be like, you know, no, I've been prescribing this treatment for literally two decades. Uh, it just has a new indication. Just we didn't have the good studies like we do now to show that it works for food allergy. And that's why the FDA didn't approve it for that. But it has indications for chronic hives for chronic rhinosinusitis and nasal polyps. Um, yeah, it's amazing. Hopefully people understand. Well, just because it got approved a year ago, it doesn't mean that it's only been around for a year. Um, and I, I think, you know, with the, the world we live in now, and all the confusion surrounding all the covert vaccines, and there's just a lot of, you know, anti pharma, anti medication, all this other stuff. But, you know, hopefully people can just have that honest conversation with their own allergist and really understand. Is this a good option for my child? And, and what does that look like?

Dr Amanda Whitehouse: 31:13

Yeah. Could you in the same way comment on some of the fears that people have about the different immunotherapy options, OIT and SLIT? You mentioned briefly, but what's your take on those if people aren't interested in Zolaire and they are looking just at that path without medication added in?

Dr. David Stukus: 31:29

Yeah, we also want to make sure people understand really risks, benefits, expected outcomes and the regimen involved. So this is not an easy decision to make. Uh, it's one that should be revisited we call it the concept of shared decision making where every family, you should really say, here's what is most important to me. I want to make sure that my child never has a reaction. Ever, ever. Well, OIT is not a good option for you because side effects do occur. Most of them are pretty mild and we can manage them, but yeah, okay, fine. That's fine. Um, oh, by the way, avoidance without treatment is a great option for many people. I think that a lot of folks out there, they get pressured. why would you not put your child on this treatment? My child did great with it. That's great. That's your story. You have no idea what my child's story is. avoidance is great. I have so many families. My son is a teenager. He's 15 pistachio allergy. He doesn't want to treat. He doesn't want to do OIT. He's like, I'm pretty sure I can make this successfully work for him. He's like, I'm just not going to eat it. And he's traveled to Europe with his school and he's doing great. He just, that's his choice and that's fine. So avoidance is an absolutely great option with OIT and SLID. It really is understanding. Okay. This is you taking proactive control of your child's allergy, and you're treating them every single day at home, hopefully under a lot of supervision, and you have, um, you know, the room to ask questions and stuff like that. Um, but just really thinking through what does this look like in your daily life? If you have a seven year old, he's playing three sports, um, and there are practice all the time. I don't know if these are going to fit into your daily life because we want to have periods without exercise for about two hours after the dosing. Uh, so those are things to consider.

Dr Amanda Whitehouse: 32:58

You make such a good point because I think the more information there is out there, the more pressure there is to do something right and to take action. But I work with a lot of families who are doing fine, avoiding, and then they're hearing all these things and feeling this pressure. Oh, I should be, I should be calling every manufacturer of every label know, have you had any problems with the food? You know, oh, we're not supposed to be eating out. Well, no, if you're doing fine and things are going along fine, many people, like you're saying, can be safe by being careful and avoiding.

Dr. David Stukus: 33:26

Oh my gosh, I have families. This is probably once a month. They say, I feel like such a bad food allergy parent because I'm not calling manufacturers. We go to restaurants, we travel, they do, you know, play dates and social activities. Um, we read labels and we have their epinephrine. And I was like, why? I was like, you're doing a great job. I was like, that is successful. It's food allergy management. I said, you're, you're living your best life. Uh, you're taking necessary precautions. You're not letting it define you. And by the way, when was the last time your child had a reaction? Yeah. It's been years, or you know, just their initial reaction oftentimes. I say, no, you, this is, this is the epitome of management. You're doing an amazing job.

Dr Amanda Whitehouse: 34:03

thank you for saying that. Because I think there are a lot of people out there who are, you know, struggling with that. The more and more they're hearing, and the more people are talking about all those exciting things that are coming up.

Dr. David Stukus: 34:13

Yeah, there's, there's just so many opinions these days. Um, and it's really hard to sort through and, but these are very powerful influences in our daily lives, especially relatives and friends and family members. I hear that more than anything of like, you know, my, my cousin or my, my sister told me this. Um, and she's really pressuring me to do this. What do you think about it? I'm like, well, it's, that's the same as if you're on a social media group and you know, the echo chamber pushing you into a certain direction or another. So, you know, Really, really thinking through what's best for your family.

Dr Amanda Whitehouse: 34:41

that's sometimes where I come in, in terms of families weighing all these decisions, obviously I can't make medical recommendations to them, but I will help them consider what their, family life is like, what their child's personality and, and mental health is like, and theirs, and what kind of support system they have, and I think that plays a big factor in what you decide to. Like you said, OIT is not for everybody,

Dr. David Stukus: 35:00

Well, absolutely. And you can change your mind at any point. So for some families, maybe it's not the right decision now, but it's that option will exist. It's not going away. Same thing was all there. Um, a lot of families, they say, well, let's see if if their allergy persists when they're an adolescent or teenager. And maybe we'll consider something like that before they go off to college to give them some protection, which for everybody listening, if you're not, uh, You know, we should be following, um, typically with labs at least once a year, uh, for, you know, because a lot of kids outgrow their food allergy, and I've met people that they were diagnosed a decade ago and never had follow up testing, and they probably lost their allergy five years ago, and, uh, yeah, so hopefully your allergist is also talking about prognosis with you as well.

Dr Amanda Whitehouse: 35:40

Good to know. speaking of all these new things, talk to us about the new options for epinephrine. I think that's what a lot of us are the most excited about. I just ordered my son's first nephi.

Dr. David Stukus: 35:48

Oh, yeah. Yeah. Yeah. So the first, um, intranasal epinephrine device is the trade name is nephi was approved in September. I believe it's a two milligram dose. So that one is only if you weigh 66 pounds or above. Um, there are one milligram dose I just learned is going to be available sometime in the next few months, and that's gonna be down to, um, 30 pounds. Eso very exciting. There are two other epinephrine nasal sprays I'm aware of that may come to market in the next 1 to 2 years. There's also a sublingual epinephrine strip. It's kind of like a list. Rene strip that we should have available by the beginning of 2026. Eso these are all needle free. When you, when you look at a lot of families tell me, well, does it work? So no, uh, to IRBs, Institutional Review Boards are what we use to help govern. Are we doing safe and ethical research? No IRB in the world is going to approve a study where we intentionally cause anaphylaxis and then randomize them to either get nasal epinephrine or no treatment at all. It's not going to work. So the way they study this, it's the same exact way that they studied the auto injectors in the first place. Is, you give the medicine to healthy volunteers, and then you look at parameters inside their bloodstream. How fast does the epinephrine reach a certain concentration, how high does it go, how long does it last for, and then what effect does it have. on parts of the body where it, where it impacts us, such as blood pressure and heart rate and stuff like that. So the nasal epinephrine was near, I mean, it was essentially the same as giving it through an injection. Uh, they also studied the nasal epinephrine in people with allergic rhinitis, environmental allergies, uh, because that's a big concern, right? Is it going to absorb? It actually absorbed a little bit better. Um, so yeah, so that's how these things are studied. We're going to be part of, um, multiple sites that are going to, um, be part of a clinical trial where we enroll people during oral food challenges that if they require epinephrine, we will randomize them to either get the nasal spray or the injection. So we'll actually have some real life advocacy data in the next year or two.

Dr Amanda Whitehouse: 37:44

I think that will be helpful for people, to hear. You understand this is the same way that the injectors we're tested and verified.

Dr. David Stukus: 37:49

It's like, um, you know, we'll never have a study demonstrating that parachutes work for people jumping out of airplanes.

Dr Amanda Whitehouse: 37:55

good comparison. you mentioned something that reminded me of something earlier in the conversation. The difference between, threshold testing and food challenges. Could you talk about that? I don't think a lot of people understand.

Dr. David Stukus: 38:07

No, this is kind of another paradigm shift. I told you in the beginning, everything's changed. Um, so not, there's not a lot of folks doing this. We've been doing these threshold challenges for a couple of years. Um, so there's, you know, oral food challenges are the gold standard. Um, this is the best way. So if you're allergic to something When when you eat it, you should have reactions. If you eat a certain amount, you know, a serving size or 4 to 5 grams without symptoms, it's very unlikely that you're allergic. So when either the diagnosis is in question or people with known food allergies, we think it may be going away. The oral food challenge is the most valuable part of what we do. It's an extremely empowering experience. I know there's a ton of fear mongering surrounding them. Uh, it's been suggested that they're inhumane. Um, that is, you know, we do a thousand food challenges a year at our center. And yeah, I mean, I can tell you this is the most helpful thing that we do. The threshold challenge is, it's very similar where we give a very small amount of the food. We observe if nothing happens after 10 or 15 minutes, we give a little bit more, a little bit more, a little bit more. Instead of trying to get them to eat an entire serving, we'll go for a very small amount that we measure out. So, like, if we do a peanut threshold challenge, the single highest dose is one peanut. So we're not proving whether you're allergic or not, because these are people we typically think you're probably allergic. And if you were to eat enough, you'll have a reaction. But these are people that have extreme restrictions because they, they thought maybe. if they're exquisitely sensitive or severely allergic, or they're not quite sure if they should pursue treatment. And often, oftentimes we can demonstrate like, wow, your child ate two peanuts and nothing happened. I'm not saying go eat peanut whenever you want, but I am saying you don't need to worry about trace amounts, cross contact. I still want you to communicate and read labels, but you know, your child's threshold is higher than they'd ever received through that sort of exposure. And if you want to start oral immunotherapy, we can start them at a higher dose and maybe aim for a higher goal dose as well. So that's sort of how we use those challenges.

Dr Amanda Whitehouse: 39:53

So that would be an individualized decision then, once you do that, do we just avoid it, or do we move into? OIT from here. Would they start the dose at the threshold that you had established then if they moved into OIT from there?

Dr. David Stukus: 40:06

Yeah, so it all depends. So we also wanna identify are they somebody who is exquisitely sensitive? So we have children react to small amounts and that's important information to know as well. Uh,'cause that means either we need to adjust the protocol for OIT and go to a much slower pace, or we may consider something Xolair. Um, so it, it's just a valuable experience regardless.

Dr Amanda Whitehouse: 40:24

Thanks for explaining that. it sounds like you're saying a lot of places are not offering that specifically, right?

Dr. David Stukus: 40:29

Not that I'm aware of. this is sort of new, even in the literature, just like, like in the last year is when we started seeing a lot of folks talk about this sort of thing, but it just goes back to it's such a great time for food allergy management because it is so highly individualized. And if I haven't impressed this message enough upon your great listeners, it's, it's okay. Everybody else's story is their story. That's not your story. Um, so we need to figure out what your story is and then it can help guide your management.

Dr Amanda Whitehouse: 40:54

The impression I'm getting from you describing all this and you tell me if this is wrong, but it sounds like the, with so much happening, the field is moving from these broad recommendations to more and more individualized Is it just becoming so specific to each person when it used to be just a broad, avoid and carry epinephrine?

Dr. David Stukus: 41:12

That's the way it should be. Uh, again, as I mentioned before, it's gonna take a while for everybody to kind of catch up. Um, but that's where we are. I mean, we're, we're in that space. That's why, that's why I shifted gears in my career and fell in love with food allergy seven, eight years ago. I knew that we were on the cusp of individualized management, just like we were with asthma 15, 20 years ago. It's not one size fits all with asthma either.

Dr Amanda Whitehouse: 41:34

Is there anything else that's on the horizon, even if it's just an idea, theory stage that you think will be a big change?

Dr. David Stukus: 41:40

I mean, there's more and more treatment options being investigated. So hold on to your hats. I mean, if we had this conversation once a year for the next five years, it's going to change. Um, so there's the, it's called epicutaneous, um, immunotherapy. So the peanut patch, um, you know, that was, it's That was shown to be effective years ago. The FDA didn't approve it because the sticky part of the patch wasn't quite sticky enough. So we're going to have those results sometime in the fall. Uh, so we may have that and that's, that might be a no brainer. Just put the patch on your skin and kind of set it and forget it. And any side effects are localized to the skin. Um, there are other treatment options that approach different pathways, including potential oral treatment options. So we can get away from the needle with biologics, which can be really fascinating. Uh, and just we're learning more and more about, long term treatment? Can we sort of space? Oh, I see doses out as kids get further along. Uh, can we combine therapies to really make them better tolerated and safer and more effective? The future is very bright.

Dr Amanda Whitehouse: 42:38

That was a lot packed in to, the conversation, but a lot of information in there. So thank you. Will you tell everybody where they can find you on social media if they don't already know?

Dr. David Stukus: 42:47

Yeah, so I mostly live on Instagram these days. Um, my handle's at AllergyKidsDoc. so I've gone through my own personal journey. Along with my academic side to everything else I do, I've taken a truly academic view of social media and I've taken a deep dive into learning how it's impacting all of our lives, especially our medical decision making and things like that. And as I've learned more and more about this, I've learned how the algorithms have hijacked our brains. So I try my best not to be on my phone. so I'm not posting as much as I used to in the past, but I'm still out there. I can never give individual medical advice, but I love interacting with folks and I learned from all of you. And I take that back to my patients and I take what I learned from my patients and offer it to all of you as well.

Dr Amanda Whitehouse: 43:28

Great. So the last question that I like to ask everybody on the show again, let's get out of the fear mongering. Tell me something good about allergies.

Dr. David Stukus: 43:39

it's a hidden superpower actually. Then people don't talk about this enough, but, uh, in general, Children who have food allergies, they tend to eat healthier. Um, they tend to have more confidence as does anybody with chronic medical conditions that they have to manage on a regular basis. Uh, families learn to cook, which is often a great sort of, um, family event where, you're learning these skills and trying new recipes. Um, so I think that, in many ways it can be empowering, and these kids actually do very well. Um, and I know there's a lot of scary stuff in the world especially in the food allergy community, they talk about how people are insensitive, but children aren't. I can tell you that, you know, school aged kids and teenagers, like, they have such support from their classmates and their friends. So yeah, I know there's, you know, jokes being made about it and commercials and stuff that make everybody mad, but like your, your child's going to be okay. It's all going to be okay.

Dr Amanda Whitehouse: 44:32

thank you so much for joining me here on the show. You have so much good information to share. I love conversations that really dive in like this.

Dr. David Stukus: 44:39

It was my pleasure. Thank you for inviting me.

44:42

And now here are your three ideas for action steps to help you follow through on our conversation today. Number one, if you don't already follow Dr. Skuas on Instagram and Twitter at allergy kids. Doc Number two, if listening to today's chat has made you realize that your allergist might not be the best fit for you, or if maybe you're someone who just gotten epinephrine from your primary care doctor and never saw a specialist, you can find the College and the Academy of Allergy, asthma and Immunology easily online. And there are also links in the show notes for you on both of their websites. You can search for a board certified allergist near you. And number three, whether you're considering meeting with a new allergist, haven't seen your own allergist in a while, or considering treatment options, or maybe have questions about your own health, take a moment to jot down some notes about your thoughts, observations, and questions. Remember that Dr. Skuas explained to us that it helps our doctors provide the best care when we come prepared with good notes and careful observations about the timing and onset of our symptoms, how frequent they are and how long they last foods we've eaten, foods we've eliminated, any treatments we've attempted, and anything else that might be helpful for them in providing us with good medical care. Thanks again so much to Dr. DUIs and thank you for listening today. I. the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda White house. Thanks for joining me. And until we chat again, remember don't feed the fear.