Ep. 283: How to Navigate Evidence-Based Science Online

Finding trustworthy, evidence-based information about food allergies can feel overwhelming—especially when you’re trying to make informed decisions for yourself or your child. So how do you know what’s reliable, and how can you use that information to have meaningful conversations with your healthcare team?

We’re joined by Dr. Manisha Relan, member of FAACT’s Medical Advisory Board, to help guide us through how to find medically vetted information on food allergy treatments and management—and how to navigate the internet after your provider introduces a new medication, treatment, or concept.

Resources to keep you in the know:

• Manisha Relan, MD - FAACT Medical Advisory Board
• Allergists Speak Up: Making Sense of Social Media - FAACT Podcast

FAACT's Roundtable Podcast can be found on Apple Podcast, Pandora, Spotify, Podbay, iHeart Radio or wherever you listen to your podcasts.

Follow us on Facebook, Instagram, Threads, BlueSky, LinkedIn, Pinterest, TikTok, and YouTube.

 Sponsored by: Genentech

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

Transcript

Caroline: Welcome to FAACT's 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 facts 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 and advocate, and the founder of the Grateful Foodie Blog.

And I am FAACT's Vice President of Community Relations.

Before we start today's podcast, we would like to take a moment to thank Genentech for being a kind sponsor of FAACT's roundtable podcast. Also, please note that today's guest was not paid by or sponsored by Genentech.

To participate in this specific podcast today we're joined by Dr. Manisha Relan,

member of FAACT's medical advisory board, to help guide us through how to find medically vetted information on food allergy treatments and management and how to navigate the Internet after your provider introduces a new medication,

treatment or concept.

Welcome back, Dr. Relan, to FAACT's Roundtable podcast. As usual, we're very excited to have you on. You are so relatable, so personable that it's just fun. And you take these topics that maybe aren't so fun and you make them really delightful and easy to understand.

So thank you for being here.

Dr. Relan: Thank you for having me. It is such an honor to return and I can't wait to dive in.

Caroline: Excellent. Well, we're just gonna go.

So for listeners who might be tuning in for the first time, let's help them to get to know you better. Can you share your background and then what drew you to food allergies?

Dr. Relan: Absolutely.

I'll try to summarize it really quick. So I'm a pediatric allergist by training.

I completed fellowship about 12 years ago and I jumped right private practice afterward.

I have been in New York for almost all of my training except for medical school,

and I fell into allergies. It was never on my radar that I was going to be an allergist. I was thinking something like PICU or NICU or adolescent medicine, like something completely different.

And then I went on an allergy rotation and honestly, food allergies just came easily. I majored in nutrition and food sciences as an undergrad.

I have a pretty good foundation and I think about food very differently from a scientific perspective. I think of building blocks.

And so the protein component of the food is very easy to kind of grasp. And so I, my allergy attending was like, you're very good at this. This is so natural to you.

Are you sure you don't want to be an allergist? And I was like, no, no, no, pick you, pick you, pick you. All the way. Pick you. Which is pediatric intensive care unit.

And and then wouldn't you know, I got sick in the middle of residency. My allergy mentor came again and she was like the hospital. And she was like, are you sure you don't want to be an allergist?

I really, really think you are meant to be an allergist. And I gave it thought. And then that hospital stay, I decided I was going to pursue allergy immunology. And so here I am.

I love the immune system.

So when I was sick I was thinking so. And this is what I loved about the ICU as well was the detail.

I love thinking all the way down to the molecule level and that you have to do a lot of that in the ICU if to really, you know, critically sick patients.

And you have to think fast and you have to think deep. And so I got to carry a lot of that same love of science to AI.

Here I am.

Caroline: And I love that you're with us, but a little hard that you had to go to the hospital to have that epiphany. But I am so glad you are now part of the team.

Dr. Relan: Thank you.

Caroline: And actually literally part of the team because you're on FAACTS medical advisory board too. Not just team food allergy community, but Team FAACT.

Dr. Relan: Thank you.

Caroline: Thank you for your help and actually thank you for your passion and being with us.

So now diving into the topic. Many of us see something on social media and then we think, wait, wait, you know, I need to ask my doctor about this.

So if that happens, where should families start so that they can feel prepared but also have a really productive discussion with the doctor?

Dr. Relan: I think we should always be open minded and open to receiving new information.

Maybe something different than what we may believe in. I think this is where growth happens,

is a space where something new comes up and instead of shutting it down, we say pause.

Hold on,

let me write that down.

Let me think about that.

Does that make sense to me? No, wait, I have more questions.

Wonderful. Bring it to your doctor.

Bring it written down. I love when people write down notes and bring it to me because if I don't know, I will look it up and I don't Know everything.

I have learned so much by being online and in conversation, both in direct messaging with people that choose to converse with me off the comment box and also people that converse with me in the captions.

It's a community and like anything else, when we all show up together, open minded and respectful of each other,

we can exchange information and learn together.

Caroline: So on that same note,

how can someone also tell that when they're going to their doctor, they're bringing medically vetted information and not a wives tale or bring something that might be very, very off and not medically?

Okay, Because I know sometimes it's embarrassing. I'll go to my doctor and I'll say oh, I saw this. And they're like Caroline, you know better than that.

I mean, and they say that just because we're good friends. But I get what they're saying is okay, I didn't maybe look at this hard enough. But how can someone also tell that if you see something on social media that it could be a valid treatment option or a valid concept to bring up with the doctor?

Dr. Relan: I think look at who's posting. That information is the first thing, right? Like what does the information say? Does it sound too good to be true? Because it probably is.

What does this information say is they're trying to sell me something. So is it a supplement?

Is it a product where there is a gain to be had by the person that's trying to sell me something?

Are you only going to tell me the secret to life and the cure of food allergies if I pay X, Y and Z amount of money with my credit card before you tell me?

When it comes to science, when it comes to facts, Caroline, we don't gatekeep most doctors, I would say most because I can't. I don't wanna speak for every 100% of them.

But majority of us went into medicine because we care about and we like what we do, which is science and learning.

So if I know something, I'm going to want to shout it out loud to the world and I'm going to want to say this is the evidence. This is the newest, this is the latest and greatest.

Did you see the breaking news? Like I'm going to want to shout it, but you should look at my credentials.

Who am I?

What do I have to gain by sharing this information with you?

And perhaps I have nothing to gain other than to educate and that's okay. Perhaps I do make money. You know, there are are accounts online that might be branded or in partnership and are trying to teach about a medication or a disease state,

and that's okay. But I always say, vet the account. What is the person's credentials? What is the person's experience with this condition?

Is this condition truly what you have? Have you been diagnosed with it? Or is this something you're suspecting you may have,

and like I said, write it down.

There may be major majority of the time where it's probably not true or factual, but we're all doing our best. And,

you know, if you don't have a medical degree, how are you going to know and discern what is what? And a common misconception for our field, I find,

is many people can't tell the difference between an allergist and an ent.

And how often have I had patients come and ask me about their tonsils and adenoids. And I'm like, but I'm not the surgeon. I won't be removing them or. And I'm sure my ENT partners have asked me.

They've messaged me as recently as last week,

hey, is it true that Xolair is being used to treat food allergies? And I was like, yes. Why did you. Why are you asking me this? I'm like, it's been years now.

It's been approved for years. And they're like, oh, patients are asking me, and I don't know anything about this.

And so there's a lot of misunderstanding or perhaps just lack of knowledge, right. About what a certain specialist does or does not treat. And that's okay.

Ask questions.

Caroline: That's really good advice. And I love how you're saying ask questions,

because truly, I think that's for some of us run into trouble is we see this idea. Someone's had great success. I want that for my family or my child or myself.

And I just get all excited and go running. But you're right. Pause and start asking lots of questions. And that's going to be very helpful.

And on the concept of questions, and we've all been there,

you start with one quick search, right? You see one thing. I've done this myself. You go onto the Internet to look up a word, a definition. That's where I always fall apart.

And then suddenly, you're down this rabbit hole, right? All of a sud, sudden, I'm looking up one definition of a word, and then I'm about ready to buy a power pack for my phone.

I mean,

I don't even know how that goes, but, you know,

or you're going down and you're in these different disease states now. And you're positive you've got some crazy thing. And so we've all done this.

So how can a family recognize when they've gone just a little too far?

Like, how much do they really need to know when they're bringing in a concept or a new idea that they saw online to their doctor? Like, how do we stop that deep rabbit hol Problem?

Dr. Relan: Oh, yeah, I don't know if it's possible, honestly. Some of us fall really, really deep in the rabbit hole, and that's okay, too. Like, let's acknowledge it.

I fell into the water rabbit hole one day and I. I don't want to tell you about all the things I was reading about where our water comes from and all the tre.

I was like, whoa, whoa, whoa. But I try my best during my visits with my patients to share websites with them that I find are trustworthy or reputable.

And so. So if you come across something new that you're like, oh, I mean, when omalizumab got approved, right, in 2024, like, that was a new thing. And maybe they found out about it before they had the doctor's visit.

You can go to a reputable site and say, are other sites also reporting this?

Am I just finding this on one piece of the social media, or is this like, widespread news? Because again, science doesn't gatekeep, so why would one person be the only person talking about this?

Let's ask ourselves the questions. Why is it early in the research stage? Maybe there's a new discovery. I mean, it does take time for real medical information to trickle down.

So it's okay to ask the questions, to ask your doctor when you're at the next visit to say, hey, what websites do you find trustworthy? Where I can continue to learn about my disease state or treatment options or stay informed.

Maybe the practice has websites, or maybe the practice has their own website or listserv or newsletter.

Maybe they'll refer you to fax.

Maybe there'll be other national organizations that they might refer to and say,

keep a bridge of this, you know, and follow these outlets,

which I try to do, because this day and age, we're all connected to the Internet.

Caroline: That is very true. And sometimes it could just be so overwhelming.

So I like how you've given us some criteria and some tools to look at the website, ask the different questions to see are they viable, are they up and up, are they saying the same things, what are their gains?

I think that's all really, really helpful. So now on the flip side of this, let's say you go to see your doctor and they do mention a treatment to you or a new epinephrine option.

If that happens,

then where should the families turn to learn more? Because we've all had that moment too when we go to our doctor's office where we forget to ask more questions.

And so then I'm like, okay, well when I get home, I'll look that up. How do we do that?

Dr. Relan: I would say if it's a medication, I like to go right to the website.

And medications are heavily regulated in this country.

There is a lot of hoops they have to jump through, a lot of things that have to get reported.

And I think everyone makes the best effort and they're, you know, we can all make mistakes too. We're human. But I would start with their website first. I would also think about a national organization.

So to me, that entity has a lot of people behind it. So it's not just one voice saying X, Y, Z in an echo chamber kind of situation, but multiple groups of specialists or multiple leaders in their field that can all sit and make a consensus, perhaps to echo something that is up and coming.

Caroline: Yeah, so you're talking like going to quite AI or the medical,

the national medical organizations.

So going somewhere like that where there'll be articles and information and videos,

Dr. Relan: I think looking into like peer reviewed kind of stuff so that it's like a group of people that have sat down together and had a conversation. Because if you look at any of our consensus statements or guidelines, they're all made with more than one allergist at the table.

And if you have ever come to any of our committee meetings, they're very fascinating because we'll be sitting there, usually a mix. And I love how interdisciplinary it is and how everyone has a turn around the table.

But you can see how big the room is and how different opinions can be and varied. And that's the beauty of it,

is that no one size fits all,

but there can be within the group consensus there's also definite no's.

Does that make sense? Like, and then there's definite 100% food allergies. Like diagnosis is this way. And the treatment options are avoidance. And epinephrine is the only, you know, the first and only treatment.

Like there's some things that are just

Caroline: facts that are just straight. Yes. And I will definitely,

for our listeners put links to AAAAI and ACAAI.

And these are again listeners, national organizations that are highly respected. And there's a lot of information I've used it Myself, where I've gone in and I've just typed in a certain word, a certain disease state,

just certain topics and videos will pop up and articles will pop up and definitions and lots of things. So that's a really good suggestion. This has been really wonderful with giving us some really practical,

simple steps to take to just try to figure out what's what, how to go to our doctor, how to have a conversation, how to do some research.

So before we say goodbye today, is there anything else that you want listeners to hear about you on this topic?

Dr. Relan: I think your doctor doesn't know everything.

I want to put that out there.

We can't. We're humans,

but a lot of us try our best and want to learn.

And if we don't know, a lot of us will say, let me look that up. I don't know,

Let me go learn about this. Let me go ask a colleague.

I'm never afraid to tell someone I don't know.

But the next steps are also really important.

And some of the misinformation. There's clear things that maybe you've come across in your readings or online this. Some things are just vetted not to be true.

And a very common myth that's running in my head right now is using honey to treat seasonal allergies.

Right. Like the pollen that the bee goes and gets the honey from is not the same flowering pollen that causes your allergies, which are from tree pollens. And so like, we can always find a hint of truth in any myth and in any misunderstanding.

And so there are a few things that we clearly can say no to in clinic, in,

in or during an office visit that I can just tell people that's wrong.

But there is a lot of things I could tell people I need to learn more. I don't know that one. And then I can come back and tell you X, Y and Z is what I found.

Actually,

one of the things that my patients taught me was about Zyrtec withdrawal syndrome. There's a few sub selected people that get really itchy when they stop using Zyrtec. And I didn't know the first time my patient said that to me that they're really itchy.

I'm like, huh?

We use this medicine for itchy skin. What do you mean you're itchy now that you're off of the medicine? And I went looking it up and wouldn't you know, there was a case series and then I called the patient.

And now it's like a known thing about this medication that some people makes and so like it's a learning thing. We are all in this together. Doctors are humans too,

and we have to give ourselves grace and give them some grace to continue to learn and to improve.

Caroline: And the landscape is changing so rapidly. I mean, I've been in it for 25 years and there's a lot of change and even just the last five years. So you're right.

It really is a partnership with the patient and the team.

Dr. Relan: Being a part of organizations helps,

I think back does a great job. I have to put a plug in. Of course. This is why I was so excited to join is because I love that you guys stay on top of the newer things.

And it's hard enough to do it in a silo. It's hard enough to be in private practice and trying to remember to learn and read and stay up to date.

It can be done. It should be done.

But it definitely helps if you're part of an organization and you go to meetings or you go to their websites and you say, I'm a listserv. And that way you're kind of connected.

Absolutely.

Caroline: Well, thank you so much for those wonderful words of wisdom that you shared at the end here and for the entire podcast. And just again,

I just love how you're so relatable and you just make things feel so simple and doable. And so we appreciate your time and your attitude and your energy and everything that you do for our community.

So thank you so much.

Dr. Relan: Thank you. I am humbled and really grateful. Thank you for the kind words. It's an honor to be here and it's an honor to serve.

Caroline: You're very welcome.

Before we say goodbye today, I just want to take one more moment to say thank you to Genentech for their kind sponsorship of FAACT's roundtable podcast.

Also, I want to note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast.

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 another.