FAACT's Roundtable

Ep. 228: Allergists Speak Up - Making Sense of Food Allergy Social Media

• Farah Khan, Manisha Relan, Zach Rubin • Season 5 • Episode 228

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Three leading allergists, Drs. Farah Khan, Manisha Relan, and Zach Rubin, are sitting down with FAACT to share their perspectives regarding how patients can use social media to benefit them as they manage food allergies. We’ll also explore how to avoid social media pitfalls and how to speak to your teen and young adult about navigating food allergies.

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Thanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Caroline: Welcome to FAACTS Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the FAACTS to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast. I am a food allergy parent advocate and the founder of the Grateful Foodie Blog. And I am FACTS Vice President of Community Relations.

Before we start today, I would just like to take a moment to thank the American College of Allergy, Asthma and Immunology for their kind sponsorship of Facts Roundtable podcast. And please note that today's guest was not sponsored by the college or compensated in any way by the sponsor.

To participate in this specific, specific podcast today is extra special since we have three leading allergists, Drs. Farah Khan, Manisha Ralin and Zach Rubin, who are sitting down with FAACT to share their perspective regarding how patients can use social media for their benefit and manage their food allergies.

We'll also explore how to avoid social media pitfalls and how to speak to your teen and young adult about how to use social media responsibly when managing food allergies.

Welcome doctors Khan, Relan and Ruben to FAACT's Roundtable podcast. Dr. Rubin, welcome back, to our other two fabulous doctors. Welcome. We are absolutely thrilled, ecstatic. I don't have enough words to describe how happy we are to have all three of you together to talk about this subject.

That is so critical.

Dr. Relan: Thank you.

Dr. Rubin: Thank you for having us.

Caroline: So we're gonna just dive right into our topic of social media and how it can be helpful for caregivers and people managing food allergies. So we know there are influencers, doctors like yourselves, food allergy organizations and researchers all posting on social media, plus younger and older caregivers and patients all sharing their personal experiences.

But how does one even begin to understand how to navigate this really wide, vast landscape? So we're gonna turn to Dr. Khan to kick us off by sharing your thoughts.

Dr. Khan: What I always tell my patients, parents, families that I'm seeing in clinic is to start to, to frame the conversation and what you're looking for based on the information that you're getting in your provider's visit.

So if you have been diagnosed with something, then it's much easier to say, this is my starting point. And then, you know, all of us look for community. And when you're living with a chronic medical condition, it can be really, really lonely.

And, you know, you get 15 minutes, maybe, if you're lucky, in the doctor's office with the doctor or the healthcare provider. And so then we really do look for other things to kind of fill out that information.

So I would say start at least with the conversation that you've had with your provider and use that as a. As a frame of reference before you start just getting overwhelmed with the amount of information that's on the Internet.

Dr. Rubin: There's all sorts of different resources that you can look into, organizations like your own that can be very helpful, that also posts on social media. And sometimes it can be very difficult to figure out what is a vetted source of information.

And so physicians should have their credentials publicly available online. So you should be able to check out if they're legitimate or not and to figure out whether they have a medical degree or a do.

Are they a psychotherapist, you know, something that's actually helpful in the field of food allergy before you dive into their type of content, there's a lot of influencers out there who are parents who will share their experiences, and sometimes they could give bad advice.

So remember not to take medical advice directly from people on social media. It's, it's. It's more of a way to kind of guide questions and spark curiosity, and then you should always bring that back to your physician.

Dr. Khan: Sometimes you get really conflicting information when you're looking at another family or a patient or parent who has the same diagnosis as you, like, oh, peanut allergy or egg allergy. But there can be so many other things that impact that diagnosis.

And so you can't. I always say this like, you can't compare your chronic medical condition journey to somebody else. You can't compare. Compare your peanut allergy journey to somebody else.

You just can't do that.

Dr. Relan: I feel like there's pros and cons to like being online. It's a community that you can access and you can reach. But then that comparative game, you know, as you were saying, it's also important to know that your provider is up to date and is giving you the best information.

So sometimes you feel like you have to ask and you should just use the online space as, like you said, as a turning point, as a discussion point, as an ability to say, all right, here's all the information that I'm getting.

What is pertinent for my child or for my case and bring it back to the doc. I like that you mentioned that.

Caroline: Yeah.

Dr. Rubin: Remember, stories and anecdotes are some of the lowest quality of evidence towards helping a general population. So a classic example I always remember, and I talk about in a lot of my lectures, is a mom who says that their child had eczema and was really bad, but once they got rid of cow's milk in the diet,

it magically overnight got better. And we can't substantiate claims like that online. And it can be highly impressionable to people, especially if somebody you see on a regular basis in social media who has millions of followers.

Those types of claims always have to be taken with a grain of salt.

Caroline: Thank you so much. That was just a wonderful piece of information for our listeners to sink their teeth in. As we get warmed up here, now we're going to turn to Dr.

Rubin. You have a very large following on social media. And when the FDA earlier this year stopped sending email communications out to consumers and doctors and basically anyone who had signed up to receive them, you took to social media with solutions.

So can you help us explore how to confirm medically vetted information?

Like, someone can go on there and see that you're a doctor and so forth, but how do they navigate all of this? Because there's so many voices on social.

Dr. Rubin: Media, it can be very, very challenging. I always recommend, recommend folks to, when they see somebody that they're listening to to look their name up. It's not hard to get outside of the social media platform and go to Google or whatever search engine you want to look for and find what their credentials are and see,

see what they're trying to do to help people.

Especially when we had that communications pause, it was hard to figure out what was going on. And people didn't necessarily know to check the FDA's websites or the CDC's websites every day.

And they had a hard time, you know, trusting that kind of information. And so it's really important that you, when you follow people, to vet them out for yourself. And, you know, oftentimes word of mouth will get out.

And I, I found that recently, over the past few months, that a lot of people have been talking about what I've been trying to do. A lot of my patients have been very appreciative of it, and it's not something I ever expected to do in the year 2025, but here we are,

and we'll hopefully be able to get back to, you know, the type of content that I've really enjoyed with allergy I just felt inclined to do it because our food allergy community relies on these recalls in order to know if certain things are safe.

Because oftentimes mistakes happen. There'll be undeclared allergens in different food products and we want to prevent those allergic reactions from happening.

Caroline: So I will link the social media information for our doctors so you can follow them yourselves personally.

Dr. Relan: And if I can add, if it sounds too good to be true, it is. There is no cure for food allergies. But if someone is exclaiming that there is, like to have a little bit of common sense.

Like if it sounds too good, if it's behind a paywall, if it's supplements, like to also always kind of come at it with the question of curiosity. Like, we want to hear about it.

Your doctors want to hear about it too, because I want to know the latest and greatest always. So if you find something, bring it to me. I will tell you what I think, think, and we can have a discussion about it.

But I would not recommend just jumping into things without looking for something that's peer reviewed. Meaning that like your colleagues as Dr. Kahn and Dr. Rubin are mine can also vet from my stuff.

And like, that's how science is, right? Like, we grow together by asking questions and being curious.

My perspective is that there's actually for patients to be aware, like Dr. Rubin said, there's credentials should be available. You should be able to find out what the training is.

But there's actually websites for us as allergists. You can look up and see that I'm board certified. Dr. Rubin's board certified, Dr. Kahn is board certified. And so be aware that the two governing bodies for allergists are the American Academy and the American College of Asthma, Allergy and Immunology.

So those resources are available to anyone.

Caroline: To access and listeners. I'm going to make sure that in our show notes, I put the links to those websites too. So we have those.

Now we're going to turn to Dr. Relan. Can you highlight social media pitfalls to avoid and then how a parent or caregiver might explain those pitfalls to their young adult or teen?

So what I'm getting at is during our Facts Summit that we held just this last winter here, we watched a video of a young person consuming their allergen and then getting ill.

And it was horrifying. But what left a lot of us thinking is how do we go home and talk about that video or talk about these things with our children in a way, or even a young adult I have college age kids in a way that they can hear,

I think.

Dr. Relan: Depending on the age of the child, using language that they understand,

like realizing that our kids are very smart, they know more than we think they know, and to be open and honest with them because as soon as they think that we're holding something back, we're going to lose their trust.

You know,

why do they turn to their peers is because they think they're going to get the truth from them. And it's so much more important for us to just always maintain that, like, your allergen will make you sick.

You know, it could be a nice way to start with a younger age child and then an older age child, your allergen will make you sick. But this is an example of like allergic reaction symptoms and this is what you need to know.

And then to an even older teen or, you know, over 18, like they should have their, as their asthma, their food allergy action plans, like on their devices if they have them, so that they know exactly what the signs and symptoms are.

And this is just a side note, but like oftentimes when I see parents and families together, the mom is always able to give me the history. But the child should also know what their history is with their allergen.

And so teach your kids the skills that they need to understand the seriousness of this so that they are not trusting online sources that they have never met.

I think the other thing is when we grew up, we didn't have social media quite the way we see it now. And so I used to think everything on TV is acting and fake.

Like that's how I was. Took everything with a grain of salt because I'm like, it's a screen, what do I know? And I think it's important to share that with your kids and to be like,

this is a skewed perspective of reality and what you are dealing with is real life. And I think helping the kids navigate social media in general at broad and then kind of helping them hone into their chronic medical condition is very helpful approach.

Dr. Khan: I was going to say, Manisha, you highlighted some fantastic points. And I think as parents and physicians, we know that teenagers and adolescents start to take riskier behavior and make riskier decisions, right as they get into that frontal cortex that is developing, you know, like, do I really need to carry my EpiPen?

Oh, a little bit of shrimp won't hurt me. And as they're navigating those normal developmental stages, I think it's also important for parents and families to change their Narrative. Right.

Because what we say to them when they're five years old in kindergarten, navigating the cafeteria lunch table is going to be different from like when they're starting maybe oral immunotherapy a little bit later or when they're teenagers.

So changing the words that you're using to help navigate the chronic medical condition, I think is also really important.

Caroline: Yeah.

Dr. Relan: And you know, to echo off of what you just said, talking to your allergist, because as your child is growing up with their food allergy or any chronic medical condition, we're here to reassess.

Right. Like we can help navigate, oh, what if the allergen touches my skin? What if I took a bite? Like, we can help answer those questions. And that's what we're here for, to navigate as the adolescent period.

Like, what about going out? What about going on dates? What about meeting someone? What about that part of life that we cannot neglect and we should feel comfortable talking to our doctors about?

So like, use us as a sounding board. That's what we're there for. That's what those yearly visits and check ins are all about.

Caroline: So I just feel we just had the best parenting 101 of children with food allergies. Where were you like 20 something years ago? Yeah, my kids are that old.

Amazing. Fantastic information. Thank you. So now let's turn to Dr. Khan. What message might you have for food allergy related content creators regarding their ethical responsibilities to followers? Because we've seen young kids get on there and post and we've seen older people, but we all know there is an ethical responsibility.

Dr. Khan: So I think the ethics of being involved in the social media space, I mean we have really seen it evolve like through the pandemic and just in the last year or so and in the last few months, it's, it's a different place than it was a few years ago, 10 years ago.

And I think, I think the ethical responsibility that every creator holds themselves to is going to be a little bit different. Right. So as physicians, I mean, I've talked to Zach and Manisha about this.

We feel very responsible. So we edit and then edit again. And we are very careful with the language that we choose, with the words that we choose. And it's not only because we took an oath to do no harm, but because we understand that there is so much gray in the conditions that we treat and the way that patients present and stuff.

So even if somebody is just sharing their food allergy journey from a personal perspective, that's great. Again, community is Very, very important when you, when you have a chronic medical condition, but just be wary of comparing your journey to theirs.

And if things don't look exactly the same, because social media is like, is where the devil basically lives to compare, right? Everybody's like, oh, well, I don't have that bag.

Well, oh, I don't have that. Or I didn't talk about that. And it's very hard and it's a very slippery slope. So I just, just do no harm.

Dr. Relan: Is what I want people to take away.

Caroline: That's a great takeaway.

So now for Drs. Relan and Dr. Rubin,

speaking directly to our medical professional listeners out there, what message might you have for them, for your peers?

Dr. Rubin: I strongly encourage my peers to get on social media and help out because there's just a mountain of disinformation online. When people get a lot of their information about their health online, they can easily be swayed towards information that is not necessarily correct.

And doctors are still considered to be one of the most trusted professions, even though there's been somewhat of an erosion of trust over the years.

Not necessarily manufactured by physicians, but kind of the system that we operate under.

We need these trusted voices to be out there. And I will tell you from personal experience, by doing this, I have found that I have gained my patients trust even before they walk in the door and they're excited to see me.

They saw what I was doing online and it really establishes rapport right away. So I strongly encourage all my colleagues to try to create some educational content because we are the experts and we can really make a difference.

Dr. Relan: I find that being authentic and being who you are really reflects through on what you create. It's an open space. Our voices are important and we can add to the conversation.

And for me personally, I have learned so much more than I have possibly shared just by working with colleagues, staying up to date, knowing what my patients are hearing so that I can be there to be like, oh, no, that's that's not true, that that's not how that works,

or oh, yes, did you hear, like, the newest thing just came through and it just got approved and yep, I know all about it. So it's a good way to kind of stay up to date and informed and connected with your patients, your community, and your actual, like, area of expertise as well.

Caroline: Thank you for that fabulous sage advice.

We're actually at the end of our time together, so before we wrap up today, I would love each of you to share anything that you feel that we didn't cover or you want listeners to hear from you.

So why don't we start with you, Dr. Khan.

Dr. Khan: I. I think social media is a really wonderful place to be able to connect with others and to get information that you wouldn't necessarily have access to. And it's not because it's, like, on purpose by omission.

It's just sometimes doctors don't have enough time to cover all of the nitty, gritty details and nuances. And we're. We're not covering all of the topics that may come up over the next six months or 12 months until you see us back.

So I think there's definitely a place for it. I just want people to be very cautious about who they're taking advice from. And then bring that back to your provider.

This was the first thing that I said on the podcast. But bring it back to your provider. Bring. Get back to your doctor. And we are more than happy to discuss with you how it relates to you, your kiddo, your family.

Caroline: Thank you.

Caroline: And then how about Dr. Relan?

Dr. Relan: I, too, am extremely grateful to social media for the opportunities for connecting with you. Like, I would never have had that moment happen to being here. But I also want to give our listeners permission to turn social media off.

If what you are listening to does not make sense, if the advice that you are receiving doesn't jive with you in your heart of heart, you're like, that just doesn't sound right.

Unfollow, delete, close the app, limit your time. That is something that I have been working on this year because you can fall into the doom and gloom. You can fall into the rabbit hole of comparison.

You can fall into all but gimmicks and think that everything is true. But in reality, I'm not holding any truth from my patients. And if there was a cure, would have told you.

Dr. Relan: If there was something we could have done, I would have told you. So turn it off. And that is okay. This is your permission to do so.

Caroline: Wonderful words of advice from both of you so far. That rabbit hole boy, we know that one so well. And so now, Dr. Rubin, wrap us up.

Dr. Rubin: Yeah. To add on to those two points, I think it's important also that if you're a consumer of content related to food allergies, it's also helpful to share your story online if you're comfortable doing so, because it'll help connect you with other people.

And also other people can find solace in shared experiences. So there's so much misinformation about food allergies out there, and it can create all sorts of different issues. But if you're able to tell your story in terms of this is what my life is like living with food allergies,

I think that helps foster empathy from the general community so that we can all live a little bit happier, healthier, and safer.

Caroline: Well, thank you so much to the three of you. I don't think I can even find words strong enough to express how excited I am about this podcast because I come from that space as a parent as well, and this is all information that I want my family to hear.

So thank you to each of you for your time. You're obviously extremely busy people and we just appreciate you to no end, so thank you. Thank you so much.

Dr. Rubin: It's our pleasure.

Dr. Relan: Thank you. Thank you for giving us a chance.

Caroline: Before we wrap up today, I would just like to say thank you to the American College of Allergy, Asthma and Immunology for their kind sponsorship of the FAACT Roundtable Podcast and for their support over the years.

Thank you for listening to FAACT's Roundtable Podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review and listen to our podcast on Pandora, Apple Podcasts, Spotify, Google Podcasts, iHeartRadio and Stitcher.

Have a great day and always be kind to one.