The Food Allergy Brain Episode 13: Dr. Douglas Jones, MD

This week on The Food Allergy Brain, Mia sits down with Dr. Douglas Jones, a board-certified allergist, co-founder of the Food Allergy Support Team, and one of the first physicians in the country to bring oral immunotherapy (OIT) into private practice.

Dr. Jones has spent nearly two decades reshaping what food allergy treatment can look like, and he traces it all back to one pivotal moment: a mother sitting in his office, newly handed a long list of her daughter's allergies, who looked at him and asked, "What do I feed her?" He didn't have a good answer that day, and it changed the entire course of his career. In this conversation he walks Mia through the "food allergy treatment menu", why there's no one-size-fits-all approach, and how he matches each patient to their own goals and stage of life instead of forcing them into a box.

The two also go deep on the mental health side of living with food allergies, why the nervous system often takes longer to heal than the immune system, the guilt so many parents (especially moms) carry, and the misinformation he gently debunks every day, from numbers equaling severity to unvalidated tests preying on vulnerable families. Dr. Jones shares one of the most moving descriptions you'll hear of watching a patient's true personality re-emerge as the weight of fear finally lifts. Mia opens up about her own lifelong food allergy anxiety too.

This is a hopeful, grounding conversation about treating the whole person, not just the immune system, and if you've ever felt buried under the burden of managing allergies, this episode is a reminder that better answers, and real hope, exist.

Find Dr. Douglas Jones:
Instagram, Facebook & TikTok: @drdougjones
Podcast: The Immune Edit (YouTube, Apple Podcasts & Spotify)

Find Mia Silverman (Allergies with Mia):
 Instagram & TikTok: @allergieswithmia
 Website: allergieswithmia.com

Transcript

SPEAKER_01 0:01

Welcome to the Food Allergy Brain. I'm your host, Mia Silverman, Food Allergy Advocate, Content Creator, and Master Student in Clinical Psychology. This podcast explores the mental and emotional side of living with food allergies through conversations with experts and people doing important work in this space. Before we begin, please remember that everything discussed on this podcast is for informational and educational purposes only. It is not medical advice. For questions about your own health, food allergies, or treatment, always consult with a qualified doctor or medical professional. For today's episode, I'm so thrilled to welcome Dr. Douglas Jones, a board-certified allergist and immunologist based in Salt Lake City with nearly two decades in private practice. Dr. Jones was among the first allergists in the country to offer OIT or oral immunotherapy back in 2012, and he co-founded a nonprofit called the Food Allergy Support Team, dedicated to education, research, and best practices for the food allergy community. In this episode, Dr. Jones shares what drew him to allergy and immunology, how he thinks about the growing food allergy treatment menu from OIT to biologics and beyond, and why he believes treating food allergy means treating the whole person, including the mental and emotional burden that patients and families carry every day. Without further ado, let's get into the conversation. Dr. Douglas Jones, welcome to the podcast. It's an honor to have you on here today. I know you're very busy, so just thank you for making the time to be here to talk about food allergies and mental health.

SPEAKER_00 1:32

Yeah, thanks for having me. It's it's an honor. I've enjoyed your podcast and uh really excited for our discussion.

SPEAKER_01 1:39

Yeah, same with your podcast as well. Oh, so thank you so much. Um, I guess I'd love to begin for those that may be learning about you for the first time. Could you just share a bit about who you are and the important work you do for the food allergy community?

SPEAKER_00 1:51

Sure. So I I've I'm based in Salt Lake City, Utah, but I I actually have a practice that's hybrid. So I have a telehealth license. Uh it's called an interstate compact. So I can actually see patients uh across the United States, um, not just in Utah. So we have a hybrid practice where a couple of days in clinic, and then I do a lot of telehealth, and again, licensed in many states, um, able to do that outreach. It's uh private practice, and I've been doing this for uh a while, uh coming up on 18 years. I think I've been in private practice now. Um, we started food allergy treatments uh back in 2012, uh so quite a while ago, and we were uh uh among some of the first to do it uh back when it was just in its infancy, brand new. And and over the course of time I've just uh evolved that and uh ended up co-founding a nonprofit organization called the Food Allergy Support Team, and that's dedicated to education and and research and best practices. So we we work directly with Ford Certified Allergists and their teams to help educate, train, provide resources so that other allergists can uh maximize their practices and and the service they're providing the food allergy community. So been involved on a number of areas.

SPEAKER_01 3:21

That's just so impressive. I'm just that's amazing, all the work you do and for such a long time. So just huge like thank you for what you do for the allergy community. We need more allergists like you who are such leaders in the space and trying to make a positive difference. So just thank you again. Um, I guess you know, there's different medical specialty specialties out there, and you chose allergy and immunology. What kind of got like what got you interested in that specific specialty? Um, was there like a particular moment in your medical school time that kind of got you interested in it? Or what was your experience with that?

SPEAKER_00 3:52

Yes, uh actually I went to medical school to become a different type of doctor, and it was some uh different kind that motivated me to do that. And in my first year of medical school, I was starting to shadow that type of physician, and immediately I just thought, this isn't me, and uh kind of panicked because I'm a planner. Uh, I like to know ahead of time and plan. And even though it was early in medical school, and so I took on an active search to find out, okay, what is me? And the uh allergist, like a month or two later, came to our first year med students and uh was giving our immunology lectures, and I remember I was really just impressed with that, and I thought, well, maybe I can shadow him in clinic. And so right after class, I went down and and uh his name's Tim Craig. Uh, this is a Penn State uh university in Hershey. And um I went down and I said, Hey, Dr. Craig, do you mind if I shadow you in clinic? And he he's a wonderful man, beautiful human. And he said, Of course, come come in. And and uh what I did when I went and shadowed though was I just let people know, hey, I'm just I'm just a med student first year, and I would kind of interview the patients and just say, How has this made an impact in your life? And uh I I loved hearing the answers, you know, I loved hearing the difference in the quality of life. I loved hearing the interaction that those patients had with Dr. Craig. And then coupling that, I knew there was a lot coming down the pipeline on the research side. And I really haven't looked back from those days. Uh, really loved the patients, loved, you know, trying to tackle their challenges and help them and make that difference in their quality of life. One thing I love about allergy and immunology is is when you board certify in that, you can see children and adults. And I I really like having a specialty area, but I really like seeing both. And and I like the ability to cross over and even track children as they advance into adulthood and and the different seasons of life and the different challenges there. So I like being I like that mix a lot. And so it's just been me. But yeah, I had that moment for first year med student.

SPEAKER_01 6:29

Wow, that's amazing. I think that allergy and immunology is a always a growing, evolving field. I think that's super awesome that you're able to kind of jump into that and not only like see younger patients that you probably have had and grow up and see how hopefully they've had an improved quality of life, but just seeing the evolution of the allergy treatments out there. And as you kind of mentioned in the beginning of our conversation, you know, you um built one of the early offices like based on or oral immunotherapy or OIT in the country, if I'm correct. Um, you know, that's I feel like still it's not like as new as it was back in the day, but it's still a treatment. I mean, like for reference, when I used to see my old allergist, he was like super anti-OIT for me. And so I think that depending on the kind of training that you had in your residency, kind of determined if you were gonna be more pro or anti-OIT. And so for you, definitely were very for it. Kind of what got you interested in wanting to start like having an OIT focused um treatment um or like office, and how has that been like to this day?

SPEAKER_00 7:29

Yeah, there were two events uh early on that were very pertinent in me kind of moving towards that. Um one was uh actually it was a medical conference that I attended, and this was early on. This was, I think, back in 2012. And uh at the NAS or national meeting, uh I listened to a pro-con debate between Richard Wasserman and Hugh Sampson, and I kind of heard both sides of this where oh, we need to keep OIT into in the research setting only. And and Dr. Wasserman, who really is the I would say maybe grandfather at this point of of the OIT, because we have different generations coming down, but uh gave such a motivating presentation that day. And one of the things that I found interesting was um, and I'll never forget it, it was they were each kind of giving their points, and I kind of saw Dr. Wasserman as helping people now in clinic with a potentially life-threatening problem in a thoughtful, meaningful manner. Hugh Sampson made a comment that day that where he said, um, you know, why would I if I refer patients over to do OIT in private practice, then how do I get them to enroll in my study? And I and I really took me back for a minute. I thought, wait, that just doesn't that just didn't sit right with me to forego, you know, people um in you know getting treatment every day. It's like, well, we can still do research, you know. I I thought we can still do those things, but people need help now. And so after that, it just sat with me for I don't know, a few weeks, a few months. I didn't really, I was still very young, younger uh as an allergist. And then shortly after that, I had this family come in, and I had already been treating their son, and he had peanut and tree nut allergies, and it was the typical avoid, epi, hope, all of the things. And then the mom brought in her daughter, who was 11 months old at the time, and she had just had a drop of milk kind of spill on her, and she got hives everywhere. And and I remember at the beginning of that conversation, the mom just said, We already have to avoid peanuts and tree nuts. Not don't tell me milk now. And we, you know, to add that to our family, because even though it was two children, I mean, as you can as you can appreciate, it's a family situation, and it you know, it affects everyone. Well, after kind of you know, our testing and various things, it turned out the daughter had milk, eggs, wheat, peanut, and tree nuts. And so we added immensely to that family's burden, if you will. And I remember when we were kind of going over everything, mom looked at me and she said, What do I feed her? We were all crushed, and I and I said, I don't know. I I don't I don't know. And that day we we uh shed some tears, and and because it's one thing for an allergist to look at a patient and say, Okay, here's your allergies, you have to avoid X, Y, and Z, or maybe A through Z in some cases. Um, and you give them the plan and tell them you know to have Epi and leave. Then we're on the next patient. But for that family, you just changed every minute of every day, and that is heavy. It is a heavy, heavy burden of every minute of every day. You just changed. And and I remember after that family left, I actually went back in my office. I didn't go directly into the next patient, and I just took a moment and I remember thinking, what did I just do? I didn't serve them, I did not serve them at all. And then this discussion with Dr. Wasserman and Chief Sampson and that whole thing came to my mind, and I thought, people need help now, they need a better answer than what I just gave now. And so I called Dr. Wasserman and he said, Can I learn? Can I learn from you? And he was gracious enough to say, Yeah, come to Dallas, uh, which is where he was located. He's like, Come to Dallas. I'm happy to share. And thankfully he was so willing and and professional and collegial. So I did. I I went there and and that those are kind of the two moments though that really motivated me. Is one first hearing about it in kind of that pro-con debate section, and then next, the conflict that I had uh with the patient and really feeling like I wasn't serving them and they deserved a better answer. And how do we get that? And and so that's where it landed me.

SPEAKER_01 12:55

I mean, wow, I mean, clearly you're probably your perception of OIT definitely changed. I mean, uh, based on like when you were in your residency, did you even have any OIT related training? Or no? Yeah.

SPEAKER_00 13:06

No, the the closest thing that we had was because when I was in my residence of fellowship, it was 2006 to 2008. So there was some really early trials. I do remember we were set to do a clinical trial for peanut. And I remember as a fellow when I was in training, part of the inclusion criteria to get into that study was we had to put people into anaphylaxis, basically. We because we had to prove before we could do any therapy that they actually had it, and part of the criteria was they had to react. And I'll I'll still I still remember one of the first patients we took care of was the daughter of one of the pulmonary critical care, uh, you know, chief of the pulmon pulmonary critical care unit. And I remember we were all uh were we gonna have to intubate her, or we, you know, there was all kinds of fear around the unknown. And thankfully that study didn't last long. It was actually closed, uh, it was never completed. Um, but that's what we had to do uh in that early, early study. And then we didn't have anything else um after that. And so everything I've learned and how I practice now is completely different to what I learned in my training.

SPEAKER_01 14:33

Wow. And so do you feel like you know, having OIT as an option probably brings you a lot of hope for your patients um and their caregivers, um, I would assume that's correct.

SPEAKER_00 14:45

Yeah, and what I love now is over the last decade, decade and a half, it's evolved to where it's not just OIT. You know, we have a whole we have a menu to pick from. I call it the food allergy treatment menu. Uh people with food allergies always have their menu, right? And the menu that they have to look for. And now I like to evolve that to we now have a treatment menu to to pick from, whether it's um, you know, just OIT or sublingual immunotherapy, there's biologics that that your FD approved. Um, you know, there's newer therapies that are going to be approved probably shortly. And so now we have options, and and what we like to do is not just have the one, but or try to you know put everyone to a box, but I always say we want to try to fit the patient to to a protocol or to the therapy. So it's it's it's finding the size that fits the one, not a one size fits all. And so we really want to individualize our therapy based on a lot of factors for people because people are so different and they are individuals.

SPEAKER_01 15:59

Yeah, absolutely. I actually was gonna just ask you about all these different other treatment options like OIT and slit and biologic. So that is like the perfect segue into that. And you know, you just mentioned, you know, how each patient is very unique in terms of like the severity of their allergies, they're just and also like their life circumstances. When it comes to OIT, you know, based on your your medical experience and knowledge, you know, what do you who do you think is a good candidate for something like this? Obviously, this is not medical advice, but just from what you've seen.

SPEAKER_00 16:28

You know, I kind of look at it as we've gone from a single-lane highway, a single-lane road to a multi-lane highway now, and with the treatment menu, and they all have trade-offs, first of all. Like all the treatments have have various trade-offs, different risk benefits. And that's where I think it's important that you have a candid conversation with people. And and you mentioned it just a minute ago. There's different life circumstances, there's different access finances, stress, past trauma, or anxiety surrounding it. And it's important that we match those things. See what are they willing to trade off? What is kind of the, you know, how do they define success? So what uh problem are they trying to solve? And people often ask me, well, what are you going to do? And I reverse the back and say, Well, what are your goals? And then I'm gonna help try to support you with no matter what your goals are and what your situation is, what problem you're trying to solve. I want to match that. So, with that context, kind of getting back to who may be a good candidate for OIT, uh, often it's those people that may want to incorporate the food into their life. So, meaning some people may want just protection from an accidental exposure from a cross-contaminant, they may want that level of protection, which is totally fine. Uh, but with if you want to actually incorporate that food into the diet, be able to what we call free eat. There, there's different terms for these. Um, OIT is probably, you know, the best answer for that particular individual, if that's what they want. The trade-offs are a little more side effect, a little more risk uh of reacting. The the protocol and and what you have to do is a little more stringent than say sublingual immunotherapy. Um, so there are trade-offs to being able to free eat that food. But if that's something they want to do, I think they're a great candidate for that.

SPEAKER_01 18:47

Yeah, that makes complete sense. And I and I wonder too, you know, when you propose, like obviously this is different from a case-by-case basis, but just generally speaking, when you do offer these different treatment options, that probably does bring a lot of peace of mind to the parents and and and probably the child, depending on the age of the child, compared to probably when you first started practicing. You know, how does that make you feel? Does that bring you a lot of just hope that, you know, there are these treatment options out there? We kind of discussed that a little bit, but just and kind of just knowing that these options are available. Like, how does that make you feel as a physician? I know you mentioned at the time when you did have that one patient that you weren't really able to give them a specific um, like any solution, just like here's epi, avoid the food, compared to now, that probably, yeah, I'd love to get your thoughts on that.

SPEAKER_00 19:36

That's a great question. And it it's fantastic. You know, it's it's one of the best things that I've been a part of in medicine, uh, because we've been able to take a situation where this, you know, the the story before where I didn't feel like I'd served the patient. I didn't feel like I'd really offered them anything of value to their life. Um, now we we have a whole menu to pick from with different trade-offs, but we can talk through that and say, you know what, let's find the one that fits you. Let's find the one that fits your situation. And the answer, by the way, doesn't have to be the same for all the foods. Let's say somebody has uh five food allergies or ten food allergies or whatever that is, we may want to approach those different foods differently because that food and what that person wants from that food may be different, uh, depending on the food. You know, like milk, eggs, and wheat are often things people want to fully incorporate into the diet because it's so common. But if but if they had those foods and then they also had a bunch of tree nuts, maybe they don't even like those or want that in there. And so they just want they want to fully incorporate these three foods, but they just want that protection of cross-contamination and kind of easing that burden off their shoulders for the other foods. And so it's like, okay, let's make something, let's construct that plan that is realistic. And the other thing about the therapies is there's trade-offs, but we also want to do the one not only that's realistic, but that they can sustain. Because that's the other thing is we we don't want to do something that's impossible, not sustainable. Um, and and I've also found through this, we want to have continual check-ins with the patient and say, all right, in this phase of life, are we still in agreement with how we want to proceed? Are we still serving your your goals here? Because as we enter into different phases of life, that answer may evolve, it may change. And and I think we all have to be open to that. You know, what's important to you or what was important to you five years ago may look very different now, and that maybe it looked very Different five years from now. You know, you're young, you're you're at a stage of life where things are evolving. Your life is evolving. And so your priorities may change. We have to be open to that and adapt to that.

SPEAKER_01 22:13

I think that's also the beauty of being an allergist. You're again you're able to see these patients in different stages of their life and kind of meet them where they're at. So that's like honestly, really powerful and impactful that you can kind of because I think lots of physicians or doctors, you'll kind of just see them once a year and that's kind of it. But you have the opportunity to see them more frequently and again, like kind of reassess each time you see them how they're feeling, where they stand with if it if they're doing a treatment and in a specific period of time in their life. So that's a really great answer. So thank you for sharing that, Dr. Jones. Um I'd love to kind of transition a bit more to the mental health side of living with allergies. And I think that we kind of discussed a little bit more just with the treatment options and how back in the day when there weren't that many options, how discouraging that can feel for parents um and their children as well. But just generally speaking, just to kind of start off with, based on your experience as a as a physician, um, you know, when you see patients that are living with food allergies, how do you see that affect their mental health? Do you feel like there's a specific type of experience that they that's kind of common that you've noticed? Again, it's kind of case-by-case basis.

SPEAKER_00 23:19

Yeah, this is a huge aspect. And then it's part of I look at it not as separate entities, but it's just part of food allergy. Food allergy to me encompasses more than just the immune system, uh, which is kind of how we were taught back in med school and and in residency fellowship training is you you really are taught at the time just to focus on the immunology and and what's happening. But we not only have immune systems involved, but we have nervous systems that are involved and hormone systems that are involved. And all of those systems work together, not in isolation, but they work together and in concert and communicate. And I think it's really important that when we look at food allergy, that we're including all of those systems because that's part of it. And I I often say we're not only desensitizing to a food, but we're also desensitizing kind of from that past trauma or the anxiety that that person may carry, the fears that are there. Those are all very real and tangible and play a role in how people are going through therapy. And and often it's quicker and easier to desensitize your immune system than it is uh the nervous system. And that that takes a you know, kind of a different kind of retraining, and I think it's something we have to pay attention to. But we'll we'll often get people, and and how you'll see this is in fact, I had a conversation with a patient not long ago where the mom, you know, they get so, and there's kind of a difference between just anxiety, not just anxiety, but anxiety versus trauma from it. But the mom said, I'm watching my child eat this food, but I'm still so anxious and I'm still so nervous. And it's a classic example of we're desensitizing that from an immunologic standpoint that nervous system retraining lags. Um, but nonetheless, we get there. And, you know, if people need some professional help, there's some great resources for that. And I highly encourage it. Um, very much so. I think it should be part of uh a treatment plan, and it's just so critical.

SPEAKER_01 25:46

Absolutely. I 110% agree. And I'm kind of going a bit off script, so I apologize. I'm kind of throwing these newer questions at you, Dr. Jones. Um, it's just a this is a great conversation. Um, so you know, you kind of mentioned that you didn't really have much training on the psychological impacts of food allergies during your residency or or fellowship. Um, so when you were entering into that population of patients and the caregivers too, like, was it a surprise to you seeing the mental health side of these patients and how they also struggled because you probably were not anticipating that to be the case?

SPEAKER_00 26:21

That absolutely, that's a great question. And I could not I could not fathom at all the burden that food allergy patients and families were carrying. I didn't know the extent until it was gone. Like I I could not fully appreciate how much weight and burden they were carrying until I started seeing it being lifted. And one of the most beautiful things of people getting treatment is you know, a lot of times when they come in the office, I you know, you're you're kind of reading body language all the time and and looking for different clues just just so you can understand them and and try and help them the best that you can. And so many times when they come in, you can feel how tight you know their body is, and you can see the the tightness on the face and the stress and the the neck muscles and how tight they are, and there's no smiling. There's and and even with children, sometimes they won't look you in the eye, they they won't engage, they won't say anything. Then, as they start going through the treatment, and immunologically, they see and biologically, wow, I can take this food, and the mental aspects start shifting, and the burden starts lifting. Now all of a sudden you start seeing engagement, you see shoulders go from here down to more relaxed. You see the face muscles relax, you start seeing smiles, you start seeing people visibly exhale, you know, when when things are happening, you see personalities emerge that they always had. It's not like a new personality, it's it's their true personality. It's just it had kind of been overwhelmed by the fear, by the anxiety, and the stress. And when those burdens are lifted, you start seeing those things emerge and blossom. And it's like, what a beautiful thing. What an absolutely beautiful thing to help people get back to themselves, and kind of you feel like you're gently leading people back to themselves, and it's awesome.

SPEAKER_01 28:39

That's beautiful, and I think it kind of touched on what you said a little bit earlier about how allergy is not just like a immunological immunology or like health-related issue, but it's also psychological, there's a psychological piece to it, and so not only just treating the actual health issues itself, but also the mental health side of it too, by just offering those treatments. And so when you do have, you know, a new patient that comes into your office um that's maybe young, and you know, they get diagnosed with all these allergies, and the caregivers especially are super, super anxious about it. And like kind of what do you typically say to the caregiver, and maybe the patient too, to kind of bring some peace of mind and comfort, um, kind of ease that stress, because it's obviously a very, I mean, I can't imagine how my mom felt when she found out that I had all these lot, like this long feed list of allergies. Um, so yeah, I'd love to hear your thoughts on kind of how you approach that situation.

SPEAKER_00 29:33

A lot of times it just starts with with education, because first of all, part of what I feel leads to the fear, anxiety, and stress is there's all kinds of misinformation and misconceptions, first of all, that they're carrying because of you know, they've heard of different stories online, or this social media group, or that social media group, or some, you know, other influencer that is trying to create fear so they can sell their product or whatever, they they're all they're carrying a lot of that. And so usually a foundation point for me is just to start with a matter of fact, let's educate, let's let's help you understand what is, let's help you understand what isn't, let's open communication. And because I think when people have misinformation dispelled, when they're able to kind of get a more correct understanding first, then we can start leading them through the fear. Because I think education leads to empowerment, then understanding helps maybe not get rid of the fear, but it helps people understand how they can better live in the fear and and start functioning. And I think that's kind of the first foundational piece. And then you just kind of gently lead them along, and then when you say, okay, let's properly educate, let's give you some empowerment, let's get a good understanding, let's focus on what this is, what this isn't, what we can do, what we can't do. Now they feel like, okay, we're communicating, we're heard, we're validated. Um, then you can kind of give them hope from there of okay, these are the options that we have. This is the situation. Now they're mind shifting to not just hope, but hope and a plan. And that's the difference where you know we we not only have the hope of something better here, but we also have a plan and a very specific plan. And we have this person here who's gonna help guide us through this, and that's where we start.

SPEAKER_01 31:46

I think that's really smart. I think as you said, like knowledge is I mean, education and knowledge is power, and I think that that definitely there's a lot of misinformation on the internet, as you definitely can imagine and and and know. And I'd love to kind of quickly ask the question about that, because you know, when you do have especially caregivers coming in and you know, they're in these different Facebook groups about allergy and all these different things, like what are the common misconceptions that you've had to debunk? Um, yeah. Does that make is that does that make sense? Hope it makes sense.

SPEAKER_00 32:16

Yeah, yeah, there's there's a lot. I think um you know, one of the common ones is my kids too severe, or numbers equals severity, and people start comparing their stories online, and the one thing I'm gonna say is I don't think I've ever seen somebody give the full story online. They give the part of the story that they want the audience to hear.

SPEAKER_01 32:51

And yeah, it's true.

SPEAKER_00 32:53

That that's different than the full story that needs to be elicited in a doctor's office in in confidence and confidentiality, where they can understand the whole situation. And so that's where I don't like when people are comparing online and the misinformation they carry is they may make some comparisons that aren't actually even true or accurate. Um, like, you know, my child is more severe than yours, or my child is too severe for treatment, or my child has this and this and this, so it excludes them from treatment. I I can't think of really times when we can't offer something now, and and so those are kind of the things that we like to debunk and demystify out of the gates. Also, just the diagnosis itself is probably one of the bigger misinformation buckets, um, because uh one of the things is when I first started, we this t 12 years ago, 14 years ago, whatever it was, you know, people would come with life-threatening, you know, true Ig mediated food allergy, but then when you get more known, any symptom that somebody has that was created by food, they start coming to you for. And everyone wants to throw that's an overgeneralization, but a lot of people want to throw any symptom that they have into a food allergy bucket, and that just doesn't serve. You know, I I think we have to really understand the differences of terms, and part of what I try to educate and empower on is what is the difference between true food allergy? What's the difference between a non-IgE mediated food allergy like F-PICE? What's what's the difference in um etosinophyll gasophagitis? What's the difference with food sensitivity, uh, food intolerances like lactose intolerance? What's the difference in something called oral allergy syndrome, for instance, or celiac disease? So there's all kinds of different ways, you know, that that but that your body's interacting with the food. And I see so many people just putting it all in the food allergy bucket, you know, let's cure your gut and we'll fix all your allergies. No, I wish it was that easy.

SPEAKER_01 35:33

That's not how it works.

SPEAKER_00 35:34

We all do. I know, we all do. And so even just helping people understand like if you have a list of 20 foods uh that you very legitimately may be reacting to, is it all the same? Or let's really understand you're reacting to these foods because of this, you're reacting to this set of foods because of that, and just helping get that information of a correct diagnosis, using correct terms for it. Now we understand how we can better treat that. But just the foundation of diagnosis, and and there's so many unvalidated tests, you know, so many companies taking um advantage of people that are vulnerable and and seeking answers because not just the food allergy community, but people that may have intolerances and significant gut issues are being taken advantage of. And that's what we try to dispel is a lot of myth on the even just the diagnostic side.

SPEAKER_01 36:39

Oh, yeah. I mean, also too, I feel like skin testing and blood testing aren't always accurate either. Right. Like, at least from our personal experience, too. Like it I I had a skin test that said, oh, I am like it was very either very low or negative for um hazelnut. And then I did a food challenge and I was actually anaphylactic to it and the other way around where it's like, oh, I'm super, super severely allergic to cod and I ate it and I was fine. So I think also having to probably dispel that information or or educate your patients and caregivers that these tests aren't always that's probably also their thing to you. Because I mean, I can imagine when you know a caregiver brings their child into the office and does these skin testing and they see all these allergens come up, it's like, oh my gosh, like this is horrible, but we don't even know if they're actually legitimate or not.

unknown 37:23

Right.

SPEAKER_00 37:24

Yeah, exactly. And and I like the point that you just brought up in that even our validated tests are imperfect and and really have to be interpreted with nuance. Um I always say not all nuts are created equal and nor their tests.

SPEAKER_01 37:43

Very true, very true. That's a good point. So, you know, so not only is education very important for you know, parents, uh caregivers, and the children themselves, I think also for, you know, uh when when kids are and you know entering schooling, like going to school and having to talk to the teachers, or or if the kids are in daycare talking to the care like daycare folks, um, you know, for everyday people um in food allergic like kids' life, you know, again teachers, coaches, grandparents, friends, parents, like everyone, what do you want them to know most about food allergies that are listening to this?

SPEAKER_00 38:22

That it wasn't the parents' fault, number one. Uh in a lot of those support systems, um I would see a lot of moms carrying a lot of guilt, and uh I don't like seeing that. Uh it's not their fault. And and I would like them to be kind of free, you know, from the guilt, free from the judgment, free from uh a lot of that particular burden that they're carrying. I would like those coaches and teachers and grandparents and family, other family members and all of them to understand this is a real deal, uh, especially when it's you know if you have um true IgE mediated or not IgE mediated food allergy can be life-threatening, can happen in an instant. Um and just because we're preparing, you know, I always tell people we like to be in the military where we're preparing for worst-case scenarios, not most likely. And that's okay. It doesn't mean you're a helicopter mom or overly anxious. You you're just responding to what you've been trained to do. And try to, you know, I just in the same way try to educate them of what this is, what this isn't. This is why we have to take certain precautions, this is why we have to act a certain way, this is why it matters that we read a label, this is why it matters that we talk to people at the restaurant, or this is why it matters that we get on early in an airplane and wipe the seats down. You know, trying to explain the why behind the actions of what's happening and helping them understand, yeah, this is real, but this is why we do it. But then also just uh again, I just don't want parents, especially moms, carrying the guilt because they they start racking their brains of what did I do? What did I do wrong? What did I do wrong? Could I have done something different? And sure, you know, if you're gonna have another child, you you wanna have information and perhaps do some things that maximizes your or or minimizes your risk uh of passing on the food allergy. But even if you do everything perfect, sometimes it just happens. Um and and I just don't want people feeling guilt over it.

SPEAKER_01 40:54

I think that's so important. I think we don't talk about, especially like parents' guilt, especially, um, because you're right, they probably do think that it's their fault that they could say something different, like by you know, maybe introducing the allergens to their baby as soon as possible, like like the peanut puffs, for example, or even just eating the allergens while they're pregnant. Um, so I think that's a really important um like just topic generally speaking to bring up. So just thank you for acknowledging that. I'd like to kind of so to kind of wrap this episode up, I asked this question to all my guests, and they all give a very different answer, which is kind of cool. So I'm very curious to hear your thoughts on this, Dr. Jones. Um, but if you could design the ideal emotional and medical support system for um food allergy families and patients, what would that look like to you?

SPEAKER_00 41:42

It would look like a community where you can ask any question where people are listening, where they're supportive. Um you can not only ask any question about the current, but also question what may currently be, and be uh open to change and open to learning as the science evolves and and pivoting and not getting too stuck into one space. Um so I I think just having a community where there's compassionate, clear, you know, open communication amongst each other so that we can just better understand each other. I I think so much of the issues in the world are you know just misunderstandings. Uh there um just a lot of misunderstanding, not having that tolerance for somebody else's experience and and just you know, if we could just understand and hear and validate and have compassion on each other and have compassion on yourself too. Um I I I think is is huge. And and that's what I would love to see. Less judgment, more compassion and understanding.

SPEAKER_01 43:12

I think that, you know, again, it's a really great answer. And I think that, you know, humans are social beings and we thrive in community. And I think that I hope that one day we can have a that can be the norm where there are spaces available where people that have food allergies can ask those questions, can feel supported, and also give themselves a lot of grace and self-compassion because food having food allergies or being a food allergy parent is really tough. Um I think that that's definitely a really, really again, really great answer. So thank you, Dr. Jones. Um so for those that want to uh follow you on social media, listen to your podcast, where could they find that? And I'll make sure to link it all in the description below.

SPEAKER_00 43:53

Sure. Uh most of my social media handles are just Dr. Doug Jones. So whether it's um Instagram or Facebook or TikTok, it's just at Dr. Doug Jones. And my podcast is called The Immune Edit, and that's on um YouTube, it's on Apple and Spotify.

SPEAKER_01 44:14

So amazing. Well, thank you so much for taking the time um to be on my podcast today, Dr. Jones. This was a really great conversation. I think a lot of people are gonna learn a lot from this and just you know feel really validated. Um, and for those who are listening, thank you for listening to today's episode. I hope you all have a great day, night, afternoon, or wherever you're from. And I'll see you next time. Bye.