#71 Shared Decision Making in Allergy Treatment Choices with Dr. Shahzad Mustafa

We are living in an exciting time in food allergy medicine with multiple treatment options to choose some and likely more on the way soon. But more options can also mean more overwhelm. I've invited some of the world's foremost experts in allergy to join me for this exciting season guiding us through these choices and decisions to lead us from overwhelm to confidence.

In this episode, Dr. Shahzad Mustafa joins us to talk about how shared decision making helps families make treatment decisions without panic or pressure. Dr. Mustafa gives us an overview of our options and explains how he guides patients through their decisions using a collaborative, values-based approach that balances medical evidence, risk tolerance, and individual goals. This conversation is about partnership, clarifying goals and needs, and making medical decisions through an informed and individualized lens.

Episode links:
Dr. Mustafa - https://www.rochesterregional.org/providers/syed-s-mustafa#
January 2026 article, "Updates in the Management of Peanut Allergy" - https://www.annualreviews.org/content/journals/10.1146/annurev-med-050224-121037

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www.kyledine.com

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Transcript

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Shahzad Mustafa, MD 0:00

It's an incredibly exciting, positive time in food allergy. We have legitimate, meaningful therapies that should be improving quality of life and potentially facilitating introduction of food allergens into the diet of infants and toddlers. In 2019, I offered zero food allergy therapy. Zero. I said strict avoidance, and here's your epinephrine device. In 2020, we started doing FDA approved peanut OIT for individuals four to 17. In 2022, we started doing OIT and infants and toddlers and expanded the foods beyond Peanut. And since last year we've been doing Xolair and I guarantee you this conversation in two years will look absolutely different. It's an extraordinarily exciting time and the beauty is a lot of these therapeutics are incredibly safe and well tolerated and have meaningful clinical impact. So, incredibly exciting time. It's really fun to be a part of this specialty right now.

Amanda Whitehouse, PhD 0:53

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.. this season is the most exciting one yet for me. I'm doing something a little bit different that I've been working on for over a year, which is bringing in all of our best experts to walk you step by step through one of the most emotionally complex parts of living with food allergies, making treatment decisions. There are more options in the world of allergies than ever before. And while that's exciting, it's also overwhelming. More options don't automatically mean more clarity. And one of the things that the people I talk to say the most is that they feel confused and overwhelmed by what is out there and what they should do. So I have been working so hard on this season with so many amazing experts to help you understand your options, think clearly, ask good questions, and make informed decisions that are values-based and not fear-based. They say that many times our work is a creation of what we wished we'd had or what we needed ourselves. And this podcast in general is probably that, but this season especially is at the heart of what I wish I'd had a little over 10 years ago when I started navigating these questions for myself. Back then, there were very little resources. A lot of these things were controversial or unavailable, and it was difficult to navigate that by myself. Thank goodness there are so many more resources out there now, but I wanted to create these all in one place, walking you sequentially through these decisions. So I wanted to start with today's episode by Dr. Shahzad Mustafa. Dr. Mustafa is the chief of Allergy immunology and rheumatology at Rochester Regional Health. In addition to seeing both pediatric and adult patients, Dr. Mustafa is involved with teaching medical trainees and participating in clinical research, particularly work on the quality of life considerations in food allergy. Dr. Mustafa's work focuses on quality initiatives and improving the systems of healthcare delivery. Dr. Mustafa is here to talk about shared decision making, what that means, what it looks like in practice, and how patients and parents can feel more empowered when navigating immunotherapy options. This episode is on the longer side, but I promise you that it is packed full of information. This is a really great introduction to walking us through what are the options out there for food allergies at this moment? What's on the horizon and how do we begin to consider what we might want to choose for ourselves? So let's dive in. Dr. Mustafa, thank you for joining me here on the Don't Feed The Fear Podcast.

Shahzad Mustafa, MD 3:41

Thank you so much for having me.

Amanda Whitehouse, PhD 3:43

Of course I had the opportunity to see you speak recently. We're not far away from each other. You're in Rochester, New York, and I'm in Buffalo, New York, and you gave a great talk to the local food allergy parents group about all of the new opportunities that are coming and the exciting book, complicated decision making process when it comes to that. So I wanted to have you on to share that with all my listeners too. Would you mind starting just by telling everybody a little bit more about how you ended up doing allergy work and where you're at now?

Shahzad Mustafa, MD 4:11

Yeah, so I'm an allergist and clinical immunologist. I practice in Rochester, New York at Rochester Regional Health as an allergist immunologist. I see children and adults. I see patients four days a week. I do a lot of medical teaching and we do a lot of clinical research. Um, I trained in Denver, Denver. Has a pretty big allergy kind of immunology presence. I trained at a place called National Jewish and University of Colorado and Children's Hospital of Denver. Um, so did a lot of food allergy and management of eosinophilic GI disorders in that setting. So when I came back to Rochester in 2009, um, you know, had a special interest in food allergy and it lent itself very well to my interest. My other interest, which is totally unrelated, but. In a wild way, becoming related in some intersections of the world is immune problems with cancer and chemotherapy. So totally different world.

Amanda Whitehouse, PhD 5:07

Interesting. Is that part of your work, a personal interest that you're just diving into?

Shahzad Mustafa, MD 5:12

Yeah, it's just one of those things that I, you know, I see patients four days a week, so we come up with more questions than answers to things and we, I realize how little we know, and that was an important one to me. That kind of came through my practice. So yeah, different interests, but food allergy is fascinating. We have a really rich cohort of patients at our practice, and for what it's worth, I have three children and my youngest, my 12-year-old has peanut cashew and pistachio allergy. I do think. That matters. I, I think it contextualizes some of these conversations and makes it a personal experience, and I appreciate the very important difference between science and feelings sometimes because it's different. So

Amanda Whitehouse, PhD 5:49

that's why I am here. That's why I've got a job too. But I appreciate you sharing that. I do think it makes a difference to us, as you know, and this is me with my food allergy parent hat on, not the psychologist. It's important for us to feel understood and obviously a, a very informed allergist can be an amazing tool, but that extra level of feeling like you understand the experience creates safety and trust in you. That might not be quite as deep other.

Shahzad Mustafa, MD 6:12

Yeah, I hope so. I mean, I, I, I live with this at home and again, I appreciate how that feels at home. I, I'm very, you know, hopefully knowledgeable in the research and the science, but it doesn't always translate. And, uh, options and people often ask, what would you do? Well, it's not hypothetical for what I do. I can actually tell 'em what we do, and it's not right or wrong. And that's gonna be the, I think the gist of a lot of what we talk about today with treatments. There's no right or wrong. There's no one size fits all. We have the privilege finally in food allergy to actually have treatments. Didn't have that years ago. So. There is no right or wrong and sometimes as we'll talk about, right. I think with choices it actually gets harder, it gets more complex, it gets nuanced, and I think that might be where we're at right now.

Amanda Whitehouse, PhD 6:52

Absolutely. And, and it's even more complicated because you expect it to feel better, to have solutions and, and for it to end up feeling more complicated can be frustrating. Like, oh, now I have options and I don't know which one, or what are the potential problems? It gets overwhelming.

Shahzad Mustafa, MD 7:05

Yeah, I mean, I don't like to be in a world of black and white, um, but black and white, although undesirable is sometimes very easy, right? March, 2020, COVID hits. It was black and white. You can do anything. It was terrible for me and most people, but. It wasn't complicated. You couldn't get a haircut, you couldn't go to a restaurant, you couldn't really travel. And then summer 2020 happened and things eased up and it went from black and white to shades of gray. Like, yeah, you can go to a restaurant, but you gotta sit six feet away, or things like that. And it actually became much more complicated and people had more questions at that point. So that's kind of the world we're in with food allergy. For years, it's been strict avoidance and carrying epinephrine and treatment of accidental injections. Well, now there's. Actually for depending on your food allergen for peanut multiple FDA approved options and other options that are not FDA approved. Like I said, there's no right or wrong answer. Nothing's perfect and it's, it's complicated. So this is a fun conversation to have.

Amanda Whitehouse, PhD 8:03

Yeah. Well I love that you acknowledge that and that you have this perspective that we don't know everything. We have more questions than we have answers, which of course is the case about, just about everything in life. Um, but I think it's refreshing for us to hear our doctors admitting that to us, that we're doing the best we can with what we have at hand now, and that's constantly changing.

Shahzad Mustafa, MD 8:23

I think it's incredibly important to acknowledge that. I know I do a lot of medical training, so I'm always working with the students and the trainees. There's something called the halflife of information, um, how, you know, how often things are new. The halflife of information in medicine, it used to be seven years, um, and there was a Harvard Business Review article in September, 2024. The halflife of information right now is two and a half years in medicine and getting shorter. So what that means in English is. If I look back to 2022, say two and a half years, half of what I was doing then I probably am not doing now 'cause it's outdated. And that's absolutely true in our practice. Probably 70% of what we do today we weren't doing in 2022. So that's a pretty remarkable thing. And that can be frustrating 'cause I can offer a 1-year-old a treatment today that is time sensitive and we'll talk about that, that I simply could not offer 10 years ago. And it's, I didn't know what I didn't know. I didn't know it for my own 12-year-old. And. If people get frustrated, but you know, if we stop and think about it, we don't treat cancer today like we did 20 years ago. You're always learning. We're hopefully getting better. Um, and I think our opportunities in food allergy, they are getting better. But the other part of the half-life information thing, Amanda, is change is really hard. Change is hard no matter how. Scientifically driven and change is hard for our communities and our patients. Change is hard. We have to admit it. For allergists and pediatricians, an uptake of change is hard. Um, so a lot of these therapies, as they're quote unquote, a little bit newer. Access and being offered them can be a challenge for our community and patient. That's definitely where we're at. Uh, we'll get into all these details, but it's an exciting time, but it can be a frustrating time too, and I think it's okay to acknowledge both.

Amanda Whitehouse, PhD 10:11

I appreciate you doing that. It's very true. Where do you think is a good starting point? Do you wanna tell us how it's unfolding in your particular clinic? Because I know you're involved in all of these things and the research behind it.

Shahzad Mustafa, MD 10:21

Sure. I mean. I, I have to always take it back, and I know you've covered these on previous podcasts, but the first part of food allergy is getting the diagnosis right. I can't speak to treatment without doing that. I, I'm sorry to be harping on what should be basic, but food allergy remains very significantly over-diagnosed in the United States of America, not by the population or surveys. By allergists, by pediatricians, by primary care physicians. And again, I'm not putting blame on anyone, even the allergy community, over diagnosis allergy. So that is the most important thing. That has always been the case. You don't wanna be over diagnosing food allergy. Avoiding foods is hard and impairs quality of life. The importance of accurate diagnosis is just. Even more important now if we're gonna actually consider therapeutics based on the diagnosis. And I hate to be this way, but I have met people on indefinite food allergy therapies that are probably not allergic to the food, and that's not a unique experience for me. Most allergists who manage food allergy and do it well will share similar stories. So getting an accurate diagnosis is imperative. We have to understand our food allergy testing. It's good skin testing, IgE testing, blood work. It's good. It is not. A yes no test for food allergy. My analogy is it's not a pregnancy test. It's not the gold standard. Many people may have positive or reactive skin testing or detectable antibody levels in the blood who are not allergic to that food, and that can't be overstated. So if we're diagnosing food allergies based on skin testing and blood work. We're gonna be horribly over diagnosing food allergy. It's much more nuanced. It depends on the history. Sometimes you have to do controlled exposures, food challenges in the office setting. Um, so that's, you know, hate to go backwards, but we have to get the diagnosis right. That's always true for everything in medicine. But with food allergy therapies now available, it's even more paramount than it ever has been before.

Amanda Whitehouse, PhD 12:28

Yeah. No, I appreciate you starting there and I know we have been laughing because your friend, Dr. Dave ssas had been on the show and this is a big platform of phase two. I think it's worth repeating 'cause he talked about in-office food challenges and threshold challenges, which I don't think are very commonplace, at least to, to many of us. Seeing allergists outside of bigger research associated facilities like yours?

Shahzad Mustafa, MD 12:48

Yeah, I'll say that if you're eating a food and you're not having obvious reactions, you're probably not allergic. No matter what any testing shows, we shouldn't be ordering testing to go looking for reasons for other things, food allergies, pretty stereotypic. I eat food XI have an immediate reaction. If I don't eat it, I don't have it. So that's step one. Um, many times between what. The families, patients tell us and the testing, it's still unclear if someone's truly allergic to a food. And that's when we do an in-office observed food challenge. And that is not really a research tool. I don't mean to be dogmatic, but anyone who is managing food allergy. Should be offering food challenges. I'm not saying that's true. Um, food challenges are complicated. They take a long time, they tie up an exam room. There might be reactions, a significant percentage of allergists don't offer them or don't offer as many as they should. And there is, you know, papers on this, but I don't think this is a research tool. If you're managing or diagnosing food allergy, you have to. Utilize food challenges when appropriate, just for your perspective. In our practice, we have six allergists. We do about 15 food challenges a week. That adds up to be a big number. Historically, we've done food challenges for two reasons to A, make sure someone is or isn't allergic to food when it's uncertain, or B, if someone is allergic to a food. To prove that they've outgrown that allergy because so many individuals outgrow food allergy like milk and eggs and wheat, and soy, and even 20% of people who are peanut allergic may outgrow the allergy. Third reason to do food challenges with the availability of therapies, and most of these therapies are not felt to cure your allergy. The role of threshold challenges, actually giving someone the food even when you know they're allergic. To try to figure out at what amount they have a reaction. And now this is pretty nuanced. This is incredibly uncommon and probably maybe not even being done routinely in research settings for studies, of course, but in clinical practice threshold challenges to determine what dose it generally takes to have a reaction is uncommon. We do a lot of that in our practice too, because it impacts the therapies we choose. So that's tough, right? You're telling an allergist and a family that your kid or yourself, you are going to react. We are going to cause an allergic reaction, but that's okay if we're gonna learn a lot about what dose you react at. We're gonna learn about what treatment looks like and how effective treatment is because food allergy reactions managed appropriately, people do very well. Um, I think it should be said aloud as an allergist. I personally don't think a reactions is necessarily a bad thing. Not treating them appropriately can be a bad thing, but reactions actually can be quite informative. And there's data on this too, man, like people who tolerate a food in a food challenge and can consume it. Not surprisingly, their quality of life improves after a food challenge, but even individuals who have reaction during food challenge, the majority of report improved quality of life afterwards. It's, it's incredibly informative. It's, it can be a very empowering experience, actually. So going backwards, gotta get the diagnosis right. Food challenges to confirm or refute it and yeah, maybe the role of a threshold challenge to figure out not only are you allergic, but are you allergic and sensitive with a very low amount or small amount of the food, or does it take a higher dose of the food to have a reaction? And there is a, there is a spread on that in individuals, which that's not a concept. I was really taught in my training back, you know, a long time ago now, 15 years.

Amanda Whitehouse, PhD 16:31

There's about 10 different questions I could ask you about that. I know I rambled out forever. How do you address that part, with the kids and the parents or if they're adults with food allergies of walking into that challenge, knowing that they're likely to have a reaction or possible. And then your insight on what contributes to that quality of life improvement after they do.

Shahzad Mustafa, MD 16:50

Yeah, it's hard. Um, it's incredibly unnatural to eat a food that you've been avoiding for much of your life. It's even more unnatural to eat a food that you know you're about to have a reaction to. And the scary part about allergic reactions is they can be somewhat unpredictable. I mean, food challenges, and there's excellent research on this, they are safe when performed in their right hands. They're not just giving individuals slugs of food, you know, tons of peanut butter. You do it in a graded stepwise dosing, starting at a very low dose. So when people do react, they tend, tend to be milder reactions, but no anaphylaxis is absolutely reported in food challenges. We have anaphylaxis in our office during food challenges all the time, and that's a very scary word, but treating anaphylaxis appropriately, it can be very empowering because it is generally very responsive and quickly responsive to appropriate treatment, which is epinephrine. I think that's what speaks to the quality of life in challenges that do have reactions. Some people are avoiding foods that they've never even knowingly had. They don't even know what it happens. They don't even know what an allergic reaction feels like. Uh, I hope that's not the case for too many, but that can be the case. And just knowing what an allergic reaction feels like can be empowering. The response to treatment, I think is one of the most empowering things, um, of epinephrine is a scary thing. It's, well, I used to say it's a needle and an injection, but not necessarily now.

Amanda Whitehouse, PhD 18:16

Right.

Shahzad Mustafa, MD 18:17

We talk about that too as there's FDA approved intranasal epinephrine, but just the effectiveness and the relative ease of epinephrine administration is incredibly empowering to patients, children, adults, families, everyone involved. So and now we're doing threshold challenges. It's very different to be given, let's say one 30th of a peanut and have a reaction versus needing to have two full peanuts to have a reaction. Those are two very different people. We say they're both peanut allergic and they are, but someone is very sensitive to let's say 10 milligrams of peanut protein, which is one 30th of a peanut, versus someone who can have a full peanut and not have a reaction. But at two peanuts, they'll have a reaction. And telling them that and how they manage the world and foods with precautionary labels and accidental exposures. Those are very, very different patients and very different risk profiles and actually potentially very different approaches to therapies if people choose. So it's a fascinating time, but yeah, you hit the nail on the head, like as we have all these things, the uniformity in allergists, I'm gonna put it on our field, to be delivering all these options to our families is becoming more and more heterogeneous and more and more varied rather than uniformly similar. Absolutely.

Amanda Whitehouse, PhD 19:36

Frustrating and I, I'm becoming more aware of that as I've been doing this podcast, but understandable because the information's coming out so quickly, like you said.

Shahzad Mustafa, MD 19:44

Yep. It's changing and there's a reality of business and every practice is different. You may not have the capacity to do food challenges that take, you know, a couple of hours and things like that, so there's a lot of considerations. There's only about 5,000 allergists in the US, which is one of the smaller specialties. So there are states with a single one or two, three allergists covering hundreds of miles, you know, out, especially out west. So yeah, access to this care can be challenging at times.

Amanda Whitehouse, PhD 20:09

It is. I just wanna say to the listeners, it's not an attempt to guilt or tell people that you should. It's, it's truly a privilege for people. It's not as simple as just walk into your doctor and get these treatments. But for those who are, the more information and the way that you approach it, I think could be really helpful for people to hear about it.

Shahzad Mustafa, MD 20:25

I grew up on the other side of medicine. I have a younger sister who I talk about a lot who's really kind of gave me the experience of navigating healthcare and being advocates for your own care and the care of your loved ones. My goal today with you, Amanda, is having this conversation, is honestly just to raise awareness. And if our food allergy community has that awareness, then they can be better advocates for themselves or family members or loved ones. This is not a, you should do this or do this. I just wanna raise awareness and try to share the information that we have today, which continues to change. It's fun.

Amanda Whitehouse, PhD 20:55

I agree. And the way that you talk about it, I think is really comforting and soothing to some people, versus kinda scary and overwhelming. So I'm, I'm happy to have you here for that.

Shahzad Mustafa, MD 21:04

You know, food allergies are undesirable. I'm not happy my 12-year-old has food allergies, but it's all relative. You can manage it. You can maintain an excellent quality of life. You can do all the things you wanna do actually with a food allergy. I think that's something that needs to be said. I think that's something that needs to be encouraged by allergists.

Amanda Whitehouse, PhD 21:21

Agreed. So in-office, food challenge done, allergy correctly established and diagnosed. Yeah. Perhaps maybe for some people a threshold challenge to know what we're working with or where a starting point is. Where do, where do you go from there? Where do you start diving into all of these options?

Shahzad Mustafa, MD 21:36

Yeah, it's, it's complicated. So my first question to the family, or patient, it depends on their food, but I will always ask them the goal of their food allergy management. Many people are like, I'm fine. I have no interest in eating shellfish. I I don't come across it in my life. I don't live in Maine. No one in my family likes seafood. I'm shellfish allergic. I'm fine not eating it. That is great. Strict avoidance. Perfectly appropriate if that works for the patient slash family. So the first question I always ask is, what is your goal in managing your food allergy? And if it's, well, I'm good with avoiding it. My goal is fine. Quality of life is great, that's fine. Some people will say, well, I don't really want to eat it. I'm a teenager. I'm peanut allergic. I've avoided peanuts my whole life. I had an accidental exposure a few years ago with a granola bar, but. It was, okay, I don't really want to eat it. I don't even like the smell of it, but I would like to feel safer when I'm around it or when I'm eating out at restaurants or what have you. So that person doesn't want to eat it, but that person wants protection from a reaction and the setting of accidental exposure. Right. Versus someone who's different, whose parents, in a 1-year-old or a 4-year-old says they're peanut allergic but I would really love for them to start eating PB and j. That's a different goal. So that goal drives some of our therapy. Let's start, I guess with protection for accidental exposure. There's two ways to get there and they're potentially FDA approved both for, depending on the foods. One is omalizumab or the brand name is Xolair, right Amanda? This is an injection medicine that's FDA, approved for multiple things. Including food allergy for any IgE mediated food allergy, it doesn't matter if it's milk or eggs or peanuts or tree nuts or seafood. This medication is FDA approved. It's an injection medicine every two to four weeks and what it does as of today, and this is gonna change over time, is that it increases the amount of allergen it takes to have a reaction. So the FDA label says if you have a food allergy. You are eligible for Omalizumab or Xolair, X-O-L-A-I-R, and if you are treated with this injection medication that's treated indefinitely, you will still continue to avoid your food allergen. But in the setting of an accidental exposure, it is less likely to have a reaction, and if you have a reaction, a much less severe reaction. And that can be very meaningful for families who are nervous about exposures, accidental exposures, restaurants, traveling, sports. That can meaningfully, potentially improve quality of life, right? The beauty of Omalizumab or this medication called Xolair is beyond food allergy. It works for multiple other allergic conditions. It's not a new medicine. It's a new application for a medication that's been around since 2003. It's FDA a approved for asthma in children. It's FDA approved for hives. It's FDA approved for sinus inflammation, sinusitis and nasal polyposis. So it's not FDA approved, but it has probably some effectiveness for environmental allergies. So, so many of our individuals with food allergy may have asthma and allergic rhinitis, environmental allergies. So this medication could actually help multiple things. And that comes up all the time. We treat people not body parts and if I'm treating someone's peanut allergy it would be nice to improve their asthma too and maybe help their environmental allergies along the way. So that's one treatment option, and we can get into the details of that. Another approach, which is available, but only about 5% of allergists in America offer. This is oral immunotherapy. This is, again, you're allergic to a food and then exposing the individual to small amounts of the food over time. Increasing it over time to do one of two things is to, again, increase the dose enough to a point of where. You're still not eating the food in your diet, but if you come in contact with it, you shouldn't have a reaction. So the same goal, but there is absolutely research that shows if you do oral immunotherapy, these small food exposures in particularly young children, particularly for peanut, has the best data. There may be an opportunity to actually introduce it, just ad-lib freely into the diet. So with oral immunotherapy, I think age of starting it is incredibly important with the biggest yield and. Infants and toddlers, um, less, you know, oral immunotherapy for peanut, I mean, it was studied in adults. That didn't work at all. There was no effectiveness in 18 to 55. In four to 17. It's FDA approved one to 17. And that's why, because in the adults it didn't work. Increase in exposure had multiple side effects, but it didn't make people less sensitive. It didn't increase the threshold dose or the amount it took to have a reaction. In four to 17, it certainly desensitizes people. It increases their threshold dose, but it comes at a cause. Though many, many, almost, not all, but many have side effects and reactions along the process. And the one to 4-year-old range, the side effects are much less and the effectiveness is even better. So oral immunotherapy can do what this medicine Xolair does. It increases the amount to have a reaction, but in young children, particularly for peanut, but possibly other foods as well. It may actually facilitate introduction of the food allergen into the diet. Those are two wildly different approaches and I think we'll spend some time on that. I'll just tell you the two other approaches for immunotherapy. One is sublingual drops under the tongue. It's being studied. It's very rarely offered in clinical practice, and people have probably heard of the peanut patch. Epi cutaneous, a patch on the skin that transduces peanut protein across the skin. That's being looked at for FDA approval as we speak. So, sublingual immunotherapy is being offered, but pretty rare in clinical practice. Epi cutaneous is not yet offered but hopefully will be coming down the pike, and particularly for peanut. But oral immunotherapy and Xolair versus avoidance is kind of what I think most patients have an opportunity to think about right now.

Amanda Whitehouse, PhD 27:52

It's a lot of things.

Shahzad Mustafa, MD 27:53

That's a lot information. That's a, that's a heavy lift.

Amanda Whitehouse, PhD 27:56

Why don't we go back to them, to the beginning of your list to the Xolair and then distinguish between Xolair and the Dupixent and, 'cause I understand there's different uses for each of them and I think people are a little confused thinking it's the same medication.

Shahzad Mustafa, MD 28:07

Yeah, those are very different medications. These are both injection medications. That are approved for multiple conditions in the world of allergy. Xolair Omalizumab, it's anti-IgE. It blocks your IgE, which is your allergic antibody. So just in essence, it makes it harder to have an allergic reaction. You can still have one, it's just harder. So that's why it's approved for food allergy. It's been studied for allergic asthma and individuals who are on appropriate asthma inhalers, but still not doing well children. It's approved for hives. It's approved for nasal polyps and sinusitis. This this is Xolair. Dupilumab is not blocking IgE. It blocks another inflammatory chemical IL four IL 13. You don't need to know that, but it's an anti-inflammatory medication that's FDA approved for multiple things as well in the allergy space. It's approved for eczema, atopic dermatitis, notably down to six months of age. Pretty remarkable injection medicine approved in a six month old baby. Eczema, asthma. It's approved for, again, nasal polyps. Sinusitis like Xolair. It's approved for eosinophilic esophagitis, which is inflammation of the esophagus. People can present with trouble swallowing, choking, gagging, bad reflux. It's approved for chronic hives just like Xolair. It's approved for a condition called pargo nodularis, which is a dermatologic condition. Goodness, recently it was just approved for COPD or emphysema. So lots of uses, but different. Interestingly, to date, studies have been going on for Dupixent, dupilumab and food allergy, particularly peanut allergy to date. And this might change over time too. They haven't borne out. It hasn't been affective, which frankly is a little bit surprising because dupilumab much like omalizumab or Xolair does decrease your allergic antibody over time. So one would've thought that it has similar benefit in food allergy to date it hasn't been shown to. So again, this comes up when we're taking care of people. Many patients have food allergy and something else. If you have food allergy and let's say eosinophilic esophagitis or really bad eczema. I gotta ask the family, if you want to do an injection medicine, what's more meaningful to your quality of life? Could you do both? I guess you could, but that seems like a lot, especially in children. I, we tend not to, it's no, there's no reason you cannot. But the amount of patients in our practice who are on two injectable biologic medications, it's pretty small, especially children. So if someone's like, my eczema really drives me nuts. It's itchy. I can't sleep at night. I have a peanut allergy, but I'm okay avoiding it. You might go for Dupixent in that patient. Some other patient has eczema and food allergy and they're like my eczema's okay. I manage it with some hydrocortisone frequent baths using Aquaphor afterwards. But my peanut allergy, gosh, it really changes what I do. I don't socialize the way I want. I don't travel. Well, that person's not a good candidate for Dupixent, even though they have eczema too. That might be a Xolair patient. This is the world, right? We keep saying this phrase in medicine, shared decision making. There is no right or wrong answer. We just present options and we have conversations and different families can choose different things. It's okay. So yeah, Xolair and Dupixent are not the same.

Amanda Whitehouse, PhD 31:13

Thank you for clarifying that. I think that was really helpful because moving on to the, next option which sometimes can be paired or done separately, we can talk about OIT. Where we can weigh whether and one of the injectable medications is appropriate and for which conditions and symptoms, and then with the OIT discussion, you talked about goals first.

Shahzad Mustafa, MD 31:32

Yeah, it depends on goals, right? And if your goal is increase threshold dose, AKA protection from a reaction of accidental exposure, OIT can almost certainly get most people there. It's a big commitment. You're ingesting a food allergen on a daily basis and increasing the dose typically over like some period of six to 12 months. Guess what? People who are allergic to a food generally don't like having that food. This is a major problem with older children with peanut OIT. They are averse to the taste of peanut. My son's 12, he's peanut allergic. He can't even stand the smell, like he can't be near it. He thinks it's absolutely disgusting and I think this is obviously a self-protective mechanism, so eating a food allergen that you're allergic to in increasing doses on a daily basis provides a challenge in itself. But most individuals I would argue, can be desensitized to food. Our best data is for peanut. For other foods, there are allergists, including our practice that offers oIT for other foods, but they're not FDA approved. And I, and I think that's okay. It's kind of off the shelf foods appropriate dosing measured protocol. But every food has different characteristics and our knowledge is best for peanut. But you can be desensitized for other tree nuts and sesame and maybe eggs and milk and wheat but desensitization is a big ask. Of families, we kind of call 'em allergists light like you're giving the doses at home. You have to be aware of what an allergic reaction might look like. You have to be comfortable with treatment. That's, that's a big ask for families. Side effects happen, allergic reactions to the dose happens. You're trying to protect someone from allergic reactions in the setting of accidental exposure, but it's coming at the cost of potential allergic reactions with their daily dose, which could be argued to be a little counterintuitive,

Amanda Whitehouse, PhD 33:26

My experience with OIT, I'd rather have a reaction in the house when I know what's going on. We're within our two hour window. It's easy for me to identify what's happening versus anywhere all the time, everywhere we go. And I'm not saying that's correct for everybody, but that's how

Shahzad Mustafa, MD 33:40

I conceptualize that. Well, that's what individuals who pursue OIT would say, right? And others who are like, hmm. I don't really like the idea of allergic reactions, and you're telling me it could happen anytime I give my child or myself, this dose, that's actually every single

Amanda Whitehouse, PhD 33:53

day.

Shahzad Mustafa, MD 33:54

Every single day in increasing doses. And it can happen in low doses, it can happen at high doses. That's scary. And that actually may not be something I wanna pursue. So OIT is absolutely appropriate if you have access to it. Peanut has the best data. Other foods are possible. I personally, this is just my opinion. The biggest thing for OITI think is the age of initiation. Like we talked about. It doesn't work at all in adults. It works in four to 17, but works is relative, the desensitization is there, but maybe less than younger children. And the side effects are more. It works incredibly well, especially peanut in age one to four. Most children are diagnosed with a food allergy by about age one ish, one to two most. There's an opportunity to really get after it right at the time of diagnosis, particularly for allergens that tend to be lifelong allergens. Peanuts, tree nuts, seeds. Most children, not all, but most children with milk or egg allergy tend to outgrow it. Peanuts. 20% outgrow it. Tree nuts, maybe 15%. Seeds, we don't know the exact number, but smaller amount. So if you get diagnosed with one of those allergies at a young age, and if you pursue OIT at such a young age, and there's an opportunity not to just be less sensitive, not to just be protected from an excellent exposure, but actually start consuming the allergen, that's a really, really big value proposition, and that's I think a game changer. We use that word carefully. We don't say cure because studies look at cure. But to look at cure in the clinical practice is hard 'cause you have to do OIT, then you have to stop it and then you have to reintroduce it. So that's not practical. But in our practice I will speak to it 'cause this is published, recently, in Journal of Allergy, clinical Immunology and Practice. We. Took a bunch of children who are peanut allergic under the age of four. The paper has about, I think 60 patients put 'em through OIT for peanut in about, in seven months, 85% were freely consuming peanut in their diet. That's pretty remarkable. It's not a placebo controlled study per se, it's our experience. But it's pretty remarkable. And the thing with OIT is often people do OIT and leave someone on a daily dose kind of indefinitely. In this younger population, we kind of went from that to incorporating into their diet with the regular foods and whatever amount and frequency they want. Kind of cool.

Amanda Whitehouse, PhD 36:17

And that's one of the things that I've heard you talk about being important to be aware of is the medicalization of food. Oh yeah. Can you say about that?

Shahzad Mustafa, MD 36:24

That's perfect. I'm an old man. I, I've been prescribed some daily medicines. I hate taking my daily medicines. And to tell a family that Johnny was peanut allergic. He's done OIT and now he must consume one peanut, two peanut, three peanuts, or some amount of peanut powder every single day. That's actually a pretty high ask. I think for peanut it's doable 'cause peanut is a very common food in the US culture. But when you start, and we talk about this all the time, desensitizing to tree nuts like cashew or pecan or walnut or sesame. Consuming those things on a regular basis is actually kind of a hard ask, and it's this funky thing. We're doing all these things to improve quality of life. Many families will start this process or think about it and be like, Hmm, consuming X amount of walnut every single day actually does not seem desirable. It may actually worsen our quality of life. And there is data that OIT in certain populations actually makes quality of life worse, not better. Um, can

Amanda Whitehouse, PhD 37:26

you share details about that?

Shahzad Mustafa, MD 37:28

Yes. I mean, I think it depends on the age. A 1-year-old, a lot less freedoms in this world versus a 14-year-old, right. I've desensitized teenagers to food. Based on mostly parental wishes. They went along with it, but then we found out that they were dumping the food in the toilet or behind their bed. That's real. People have those experiences.

Amanda Whitehouse, PhD 37:46

Yeah,

Shahzad Mustafa, MD 37:46

it's taste aversion. They don't want it. They don't feel good when they have it. They don't like the way it tastes. They don't really know why they're doing it. They don't have any interest in having the food anyway. So the key here is all of these therapies, whether it's Xolair for food allergy, not other conditions, asthma's different. EOE is different. But for food allergy, the real goal. The real goal, I think, and this is my opinion, is to improve quality of life with food allergy. You do that by decreasing the likelihood of a reaction if you come across the food. Can these improve your quality of life? Could they decrease your chance of ending up in urgent care or ED with an accidental exposure? Absolutely. But the goal is quality of life. And interestingly, Amanda, that's actually not what's the primary study points in these studies, right? The studies are figuring out how much of the food you can have before you have a reaction. So medicalizing food, telling someone to eat some fixed amount of food every day indefinitely, that may actually be more, you know, disruptive than helpful.

Amanda Whitehouse, PhD 38:44

Agreed. I wanna go back to questions that I know people will have about some of the things that you touched on. And you're obviously emphasizing this idea that if we're eating a food safely, right, that's the gold standard, that's the test. But with the younger kids who do go through OIT, what does the data say about what happens with their blood work? I know people wanna know even though that's not. Necessarily the most important

Shahzad Mustafa, MD 39:06

factor. Yeah. People love tracking things, right? Yeah. People love tracking

Amanda Whitehouse, PhD 39:09

things. All of us moms have our spreadsheets with our blood poor people. I

Shahzad Mustafa, MD 39:12

hear, I hear it, I see it. I live it. I don't think it's has great clinical utility, but over time you do tend to see your food allergy allergic antibodies, food specific IgE go down over time. That's not the end all, be all. That doesn't mean if your levels go down, oh, you're great. Or if it doesn't, if your levels don't go down, it doesn't mean you're great. And that's very important with Xolair, Xolair, omalizumab blocks, IgE, right? So once you're on that, the utility of skin testing and blood work is almost useless. And that's something people don't like. They're like, I want it checked. I'm like, well, you're on a medicine that really messes with those results. You really can't have it checked. Or you can, but it doesn't mean anything. So yeah, IgE testing. Should decrease over time, but I'm not sure how much that helps us. Skin test reactivity should decrease over time. I'm not sure how much that helps us. I really would focus on how are things going clinically? What is the patient yourself, your child, actually able to consume safely?

Amanda Whitehouse, PhD 40:09

Okay. If you're comfortable sharing, I know everyone will wanna ask with you being a food allergy parent too, what's the decision making process look like with your own son?

Shahzad Mustafa, MD 40:17

Oh yeah. I'm very comfortable sharing. My son has seasonal allergies. He's wheezed as a child but doesn't really have asthma, thankfully. He's allergic to peanuts, cashews, and pistachios. We did never, we never did any oral immunotherapy because, the juice wasn't worth the squeeze for our family. The process of doing it would probably have added more anxiety and more disruption to our daily life than managing his peanut and tree nut allergy. And that's not because oral immunotherapy for peanut's not effective. It, it is. I would've done it if I knew about it when he was one for sure, because then the opportunity to get rid of the allergy, it really wasn't an option until he was let's say seven or eight. So at seven or eight, I kind of missed that window. So that's, there's a little inherent frustration, but that's the half-life of information In medicine, you only know what you know, you can only do what you know it today. Right? So offering him OIT at eight, seven, or eight, we thought the, the pros did not outweigh the cons. My son is on omalizumab, Xolair, for food allergy. The reason is Xolair and Dupilumab in a lot of these injection medications in our field have excellent, excellent, excellent safety profiles. And that can't be said enough. We go to medical school and the first thing we learn is do no harm, and food allergy, it's meaningful, it's disrupted, it affects quality of life. I sure as heck, wish my son didn't have food allergies, but we have to be very careful. We cannot pursue therapies that are harming people because I don't think food allergies is an illness. I think it's a condition. Those are different and we don't wanna be treating people and giving 'em complications and illnesses. So the safety profile of Xolair is excellent. So that was very reassuring to me and my wife. It has excellent efficacy and the age matters. He started when he was 11. He's becoming much more independent, a lot more autonomy, visiting friends. Making his own decisions we're not around as much anymore. He's not a one or 2-year-old under our thumb, right? Plays sports. We travel a lot. So it gave us a real comfort socially in settings where he's doing things independently or when we're traveling, particularly internationally, which can get tricky with food allergies, everyone knows. So it gave us tremendous comfort that it would likely be increasing his threshold dose, protect him in the setting of accidental exposure with an excellent safety profile. I'll tell you Amanda, when we do food Xolair in our practice and we've prescribed it, I don't know the exact number, probably about 110 times. We offer every single person a food challenge after four to six months to see if it's actually working. As I told you, the skin testing and blood works not helpful.

Amanda Whitehouse, PhD 42:49

Right.

Shahzad Mustafa, MD 42:49

Um, my own son won't do it. He thinks it's crazy. I knew I was

Amanda Whitehouse, PhD 42:54

gonna ask you that.

Shahzad Mustafa, MD 42:55

Yeah, no, you won't and I appreciate it. Again, what's the goal? The goal is to improve quality of life. For foods like peanut, people don't want to eat it. They just wanna be protected.

Amanda Whitehouse, PhD 43:03

If you don't mind me asking, this is a little bit of a sticky question, but you're an approachable guy, so I'm gonna throw it out there.

Shahzad Mustafa, MD 43:10

I have a pathology of being overly honest. It gets me in trouble.

Amanda Whitehouse, PhD 43:12

Well, I, I kind of like it. Um. Some of us, unfortunately, especially when we have limited options for allergists, do not find them to be as receptive and the conversations go very negatively when we bring up. Well, I heard this Dr. Mustafa talking about that we should be doing in an office food challenge. Why am I not doing it? And that's not the way we're approaching it, but you know, more allergists than I do. What can we do on our side of things to have a productive conversation when we're just trying to learn or get information?

Shahzad Mustafa, MD 43:38

Oh gosh. I mean, medicine used to be very top down. I am, your doctor. I will tell you what to do. I mean, that's not right. It's kind of flipped on its head where it sometimes feels bottom up a little bit, where patients are literally telling me what to do and if I don't do it, they get mad. That's not right either. We wanna be in this world and we say it a lot, but I think it's hard to do. We wanna be in a world of shared decision making that I'm your advocate, I'm part of the team. I'm going to provide you with information, and together we will make decisions. It is absolutely appropriate for two families with the exact same medical history to make different decisions. We all have different values, different belief systems, different goals. Um, but yeah, I mean, here's the pathologic honesty. There's not many clinicians who are really good at that. That's a hard thing to do. It's not algorithmic. It's uncomfortable because you may not even agree with what the patient's doing, and that's okay. It's not you, it's them. You're trying to advocate for them and you're always there, you know, if things change. But it's tough. I do think the food allergy community can be helpful in word of mouth of allergists in communities that are really good at this. I always tell people, you get your physicians, clinicians from word of mouth, not Google. If you're in a community, I will say, and I have this from my experience, my own family, do not be afraid if you have access to get a second opinion, you will not offend well, even if you do offend your doctor, they're not the right doctor if they're offended. I encourage second opinions for people. A, our styles might not jive. I appreciate that. But b, you just want to hear information from someone else, do not be afraid of offending your allergist. If you have access to someone else and go have another conversation, like I think that should just be said.

Amanda Whitehouse, PhD 45:27

I love it. Thank you for saying that, because I think we do. We're doing that dance too, of not wanting to play Dr. Google and walk into your office and say, here's the situation, but we're nervous when we're doing it, so the way it comes across can be tricky. And, and you're right, we have to just make the decisions for ourself, not,

Shahzad Mustafa, MD 45:42

I have family members that are unhappy with the care they're getting from Doctor X, Y, or Z for whatever specialty, and they won't seek another one. 'cause they're like, I don't wanna offend him like he'll know or she'll know. Good. Like it's fine. This is your healthcare. Then again, appreciating that access to allergist is incredibly limited, especially when you get out of urban, suburban settings.

Amanda Whitehouse, PhD 46:03

Definitely. Well, thank you. We appreciate you. You have such a knack for putting this into words and explaining it in a way that we can grasp and digest, so thank you for doing that. Please keep doing it. Even if you're honesty gets you in hot water sometimes we want you out there doing that for us. So thank you.

Shahzad Mustafa, MD 46:18

Thank you so much for having me. I hope this conversation was worthwhile to you and everyone listening.

Speaker 46:24

I know that that information was so worthwhile for so many of you listening, and I also know that it's a lot. So as we wrap up, here are three practical steps you can take after listening to this conversation to help you sort through what you've heard.

Speaker 46:37

Number one, as Dr. Mustafa explained, clarify your values before your appointment. What are your priorities in regards of protection against accidental exposure, expanding diet, reducing anxiety, increasing independence. There isn't one right goal, but knowing where each of those ranks in terms of importance to you helps to make your decisions much clearer.

Speaker 47:00

Number two, consider Dr. Mustafa's input on preparing questions and going into conversations with your provider seeking out partnership and shared decision making. Try coming up with the questions that you're unsure about before you go, what you specifically want to know about their practice and what they offer, which aspects of your priorities or your medical needs you want to address. And knowing for yourself what kinds of things might make you pause, consider or reconsider treatment decisions.

Speaker 47:30

And then number three, if you feel like you could benefit from some extra support in navigating all of this, you can follow me by subscribing to the show, on social media @thefoodallergypsychologist, or on my website thefoodallergypsychologist.com/connect. That will take you to the signup for my newsletters. In all those places I'll be sharing updates about the workbook that I've been working so hard on to accompany this season and to provide support on the social emotional side of considering choosing and navigating immunotherapy treatments. It is called From Fear to Freedom: A Workbook For Navigating Allergy Immunotherapy and it will be available in June. I'm so excited for it to be out there in the world and hopefully help some of you who could use it.

Speaker 48:00

There are more options than ever before in allergy treatment. I hope that this episode will kick off an amazing season of helping you feel supported in that. With the right support, all of these new options can be empowering instead of overwhelming. Thank you again to Dr. Mustafa for modeling for us what thoughtful collaborative care looks like. If you know someone that this episode would be helpful for, please share, leave a rating or a review wherever you listen, and help me to continue reaching people in our community who need support. I'll be back to talk to you again next week.. 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 Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.