FAACT's Roundtable

Ep. 267: Traveling with Mast Cell Activation Syndrome (MCAS)

• Season 5 • Episode 267

Share episode

Living with Mast Cell Activation Syndrome (MCAS) requires constant awareness and preparation—but what happens when you hit the road or board a plane? We’re joined by content creator and patient advocate, Jenna Gestetner, who’s sharing her top strategies and favorite tips for traveling safely and confidently with MCAS. 

Resources to keep you in the know:

You can find FAACT's Roundtable Podcast on Apple Podcasts, Pandora, Spotify, Podbay, iHeart Radio, or wherever you listen to podcasts.

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

Sponsored by: ARS Pharma

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

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, I just want to pause for just a moment to say thank you to ARS Pharma for being a kind sponsor of FAACT's Roundtable Podcast. And please note that today's guest was not sponsored or paid by Ars Pharma to participate in this specific podcast.

Living with mast cell activation syndrome requires constant awareness and preparation.

But what happens when you're traveling and you hit the road or you're boarding a plane?

Today we're joined by content creator and patient advocate Jenna Jestiner, who's sharing her top strategies and favorite tips for traveling safely and confidently with mast cell activation syndrome.

Jenna, welcome back to FAACT's Roundtable Podcast. People just love you and we're so happy that you're here to share your wis and just your great personality.

Jenna: Thank you for having me. I'm so excited to be back.

Caroline: I am too. This is absolutely fabulous. But for those who may not know you yet, can you share your background,

including your journey with mast cell disease and social media? If you can just give us everything.

Of course.

Jenna: So a little bit about me. I'm originally from London and I've lived in Los Angeles for most of my life.

And I just graduated from usc, the University of Southern California.

I started social media almost three years ago. It'll be three years in December.

And I really started because I had had these health problems my whole life that seemed so random. But as I got older and as they got worse, we sort of realized that they were actually connected.

And when I was 18, right before I went to college, I got diagnosed with mast cell activation syndrome. And that explained all these strange allergy like symptoms that I had.

But you know, I, I always came back on allergy tests as completely negative and I never like, grew up thinking I had allergies.

So when I found out that I had a mast cell condition,

everything just sort of went from there. It was one of those things that felt very isolating because it is so complicated and. And it is mostly invisible. And so I didn't really connect with people on it.

I didn't really know how to explain explained and I didn't really know how to talk about it.

And so when I started posting on social media, I instantly found a community of other people who could relate. And it actually allowed me to develop more of that language around how to talk about it and how to deal with it in my life.

And I hope that I can share some of that with other people and hope that they can do the same in their own lives.

Caroline: I was just saying to Jenna before we started that one of the things I just really adore in her is that she normalizes this life.

And I think that's just something you do so great. You just normalize it. And you travel so much too, in this whole normalization.

Before we get into those travel tips, can you help our listeners understand what mast cell activation syndrome is and then how it affects day to day life and then ease into travel planning?

Cause obviously it's gonna impact everything.

Jenna: Yeah, well, I'm gonna go ahead and assume that most people listening know about allergies. And I think when most people talk about allergies, they're referring to IgE mediated allergies.

And so that IGE is just one receptor on the mast cells, which are a type of white blood cell that are in the immune system. And mast cells release many different mediators, one being histamine, which I think is probably the one most people know about.

And so, you know, in an allergic reaction, IgE mediated allergic reaction,

the foods bind, essentially bind to the IGE receptors on the cells, and then the mast cells release histamine and then that causes the symptoms of an allergic reaction. But in a mast cell activation syndrome, there are many other receptors on the mast cells that many different things combine to everything from like hormones to different other cells in the body and foods and things like that.

And there are also many other mediators, and those mediators get released by the mast cells and cause all kinds of symptoms that truly can affect every part of the body.

And when you have mcas, the best way of describing it is that you're much more sensitive to things your mast cells like. I heard Dr. Describe this the other day as.

It's as if they're leaking and twitching. And I think that's a good way of describing it. It doesn't always make sense. One day you could react to something, and one day you Know, the next day you might not.

And it's truly like,

they're. They're just, like, already leaking, these mediators. So you sort of at a base line level, have lots of symptoms, and then they're also twitching. So maybe you get. You get a little bit too cold, and they start releasing mediators, and you're essentially having an allergic reaction, and it was just cold,

or you're having an allergic reaction and you. The pressure just changed out outside or wherever you were.

And it looks so different for everybody. And I think that's one reason why a lot of people don't know about it and why it's hard to get diagnosed and hard to get treatment.

But it also truly does affect every aspect of your life,

whether that's, like, mentally and physically.

And it means that there's a lot more preparation you have to do a lot more extra steps you have to take when you're doing things. The reason why, you know, traveling can be challenging is, like I said, there are so many things that can trigger mast cells.

And so what I've always been told and what has helped me the most is kind of step one in treatment is to figure out your triggers and avoid them. Right.

So most of the time, what that looks like in your everyday life is creating a routine and sticking to it. And when you travel, you don't really have that routine.

You're around all new things. There are so many things that are out of your control. And that's ultimately why travel can be so difficult for people with master.

Caroline: Well, and that's what makes travel so fun too, though, is having all these adventures. So you've got to really try to find this balance between traveling and staying safe. But having new adventures, well, and then also, too, your environment's constantly changing,

cause of either hotels or staying with somebody. Let's dive in a little deeper now on some strategies. So with, you know, mast cell disease and if someone's looking to travel, what's the first thing say someone says, you know what, I want to go to Florida for New Year's.

What's the first thing they should think about? Or what do you suggest?

Jenna: Yeah, like you said, part of what makes traveling so fun is that spontaneity and being able to do all these different things.

Now, I'm a very naturally anxious person who likes routine,

but I will say that. And I sort of heard somebody say this, and it really resonated with me that preparation is the most important thing, because anxiety and stress is not what keeps you safe.

It only keeps you from enjoying and being present.

And what does keep you safe is preparation and being cautious.

I always like to try and put things in place. And obviously this is dependent on who you're traveling with, what resources you have to travel. And there are so many factors and I'm not gonna, you know, pretend like that doesn't exist.

But some of the things that I've known to help me are one, I know that the plane ride is the part that that can be the biggest trigger for me.

So oftentimes, not only does that mean I'm going to have a flare up from the plane ride and might not feel good the next day, but it also means that the days leading up to the travel, I'm thinking about and worrying about the plane ride.

And then if I'm only somewhere for five days, I'm then probably spending those five days worried about the fact that I've got to go back on the plane home now.

So for anyone who doesn't follow me on social media, I graduated in May, and for the past six months I've been traveling.

And the way I've been doing it is I've been staying somewhere, somewhere for at least a month. That way I'm not worried about the plane ride because it's like a once in a month or even longer than that thing.

And so I'm able to actually enjoy. And then the second thing would be having a kitchen. I don't always have a kitchen when I travel, but because foods are one of the most complicated things for me, sometimes I can still get access to food at a hotel, at restaurants,

but it causes a lot of anxiety and uncertainty and I like to have that control. So being able to stay somewhere with the kitchen, which again, like I said, isn't always possible,

but when I can, it's really helpful because it allows me to take control over that part of my life and then be able to spend the rest of the day out doing other fun things.

Caroline: If you're staying in a hotel, do you try to get a room with like a refrigerator and a microwave and do maybe some in room cooking? Or do you order maybe through Instacart or doordash or something and have food brought in?

Like how do you deal with a hotel and eating?

Jenna: It's a big mix. So obviously I, I do research on restaurants before and I try and find restaurants that have foods that are on the menu that I can eat that maybe they just need to be modified a bit.

And sometimes that means going to the restaurant, sometimes it means doordash or Uber eats.

And oftentimes if I find a restaurant and it works well and they make it right, I will just keep eating at that restaurant.

And as far as fridges, yeah, I find most hotels either have a fridge or they can put one in your room.

The microwave I actually can't do because I can't really have leftovers because the histamine builds up and then I don't really tolerate that.

So there are a lot of complexities. But there have been times where I've been able to stay at more resort style hotels. And so you're typically like there the whole time.

And in those cases I've reached out in advance to see if I can speak to the chef.

And most of the time I've been able to speak to the chef in advance. And I think these people, they want to help you. Like you're a guest at the property, they want to help you.

But I think it's about sort of pulling your weight on that.

I think I used to always feel like I was a burden for,

for needing certain things or having to ask for things. And I think that you shouldn't feel like you're a burden for getting your needs accommodated, but that's as long as you pull your weight and put in the effort.

And so what that looks like for me is emailing in advance, getting the chef's contact information, being very clear about what it is that I need and making it as easy as possible for them.

So kind of, I guess, fortunately enough for me,

because of how limited my foods are that I can eat, I basically eat the same thing every day and two of the meals are the same. I eat the same thing for breakfast and lunch and then something slightly different for dinner.

So I basically just tell the chef, this is what I'm going to have every single day. And I communicate with them. And oftentimes I'll say, what's the best way for me to contact you on a day to day basis?

And oftentimes it's WhatsApp, whether it's directly with the chef or somebody that works with the chef,

and this is based on discussions with, with them. But oftentimes what I've done. So this is now what I suggest because this is what has worked for me. When I talk to a new chef, I'll say, you know,

how does it sound if like the day before or even the morning of, I say, this is where I'll be eating for lunch at this time. This is where I'll be eating for dinner at this time.

That way they're able to plan around their schedule, and I'm not just randomly texting them, being like, hey, can I have food right now?

Caroline: So I watched Jenna in person,

live,

working with the chef, and I have to tell you, it was amazing. So, in fact, recently held their food allergy summit, and Jenna was in attendance, and she did just that.

She'd reached out to the chef ahead of time. We also followed up. And the chef adored you, Jenna. He honestly was raving to me about you, how you were the perfect guest.

And you're right, it wasn't a burden. He really wanted to meet your needs. And because you reached out to him so far in advance, he was able to make sure he had all the ingredients on hand,

because in busy restaurants or properties like that,

the food comes in and out daily. I mean, it is constantly moving. And so he was able to plan ahead. But what he loved was your communication. You were so clear with him on what you needed and when you needed it.

And they would have it ready on time, they would come walking by with it, and they would tell me, oh, this is for Jenna. We're ready. She's coming down. And, I mean, it was fantastic.

But seeing the other side and seeing the food service side and how much they appreciated that, I mean, I know it takes a little work ahead of time on you, but when did you start doing that?

Was that just kind of natural idea? Cause it's brilliant.

Jenna: Yeah. Well, first of all, I want to thank you, because that was also because of you, with all your help organizing everything, and anyone who's listening, if you're interested in going to the Facts Summit next year and you have any kind of allergies, like, don't even worry about it.

Everyone was taken so well care of. And I would say I really started doing it because it was. I mean, obviously it was a necessity. You know, my family does travel a lot.

My dad was always the biggest, like, support in all of that. And he helped me at first, you know, reach out to the chef, talk to them.

I used to be very, I guess, like, shy about asking because I just felt, like, very confused. I also would get very overwhelmed when people wouldn't understand. And I just, like, didn't really know how to explain it.

And I've gotten more confident over time. So I know it's not. It's not always easy at first, and that way, that's why it can be helpful to have somebody that might be able to be there and sort of assist in those conversations,

because it can be complicated, especially when for example, with me, I have to also be specific about the way things are cooked. I remember going to a hotel one time, and the first day I got there, the chef got super excited about cooking my fish on this wooden wood fire grill and how good it was going to taste.

And I got hives all over my body because it was higher in histamine because of the wood and the fire. And obviously he didn't know that it wasn't his fault.

And, you know, I communicated that, and we did it differently next time. But like you said, I think communication is the biggest thing, and then honoring and respecting that. So I always communicate.

And whenever I do communicate, if I say, you know, I would love to have lunch at 12:30 at this restaurant, and they say, yes, I'm going to be there at 12:25.

I'm not going to be late, regardless of whether or not the food is ready at that time. I'm showing them that, like, I appreciate their time and their effort, and I'm not going to disrespect that.

And I think that's actually something that I've gotten a lot of chefs really appreciate, is that, you know, they. They have people that come that.

That ask for things and don't really respect the effort that they're putting in.

Caroline: That's a really good point, because again, I watched you and actually our other attendees as well, and everyone was so grateful and so thankful and so kind. Like you were saying, I would love to have this at this time.

You know, just the tone you used and the tone everyone used that made such a difference. Cause they were so proud that they were able to really meet your needs and work hard on it.

Do you see a difference between hotels and, like, Airbnbs?

Airbnbs, for me and my family, make us a little nervous because we also have animal allergies, animal hair allergies and stuff. So we've tried a few, but my family actually just prefers to go to a.

A hotel where it's a chain. They have standard cleansers and things that we're used to. But what are your thoughts?

Jenna: Yeah, I personally prefer to go to hotels than Airbnbs just because of what you said. I feel that there's higher cleaning standards, more. There's more standardized things for those kinds of things.

And also it's nice to be able to have the hotel to be able to help with things.

But I'd say that an Airbnb, it's one of those things that depends on the resources you have. I think it's just A bit more effort maybe in research to put in on an Airbnb B where I'm staying right now in Miami for a couple of months.

I rented a place and when I arrived I bought all unscented hand soap, dish soap, cleaning products. So even though they had some of these things, I went out and bought my own of them to be able to use.

And when I got here, you know, I do trust that everything was clean. But I put all the plates and everything in the dishwasher again and put it on a sanitized cycle with the fragrance free dish soap.

And so I, I do often take those extra steps just out of my own comfort to do that.

But I think it really depends. I know for hotels,

Marriott Residence Inn and Hyatt House are like two that I've done before that I really like. And I feel like they're really high quality places to stay as well.

Caroline: And they have those special rooms too because like with Marriott will ask for the allergy friendly room where they change all the pillows and they clean with different products and, and they really great depth.

I mean they spend a lot of extra time preparing those rooms. Again, we love it with our environmental allergies.

And so now there's certain things that you travel with. Specifically my family,

everyone carries a jar of sun butter or wow, butter and bread and crackers that are safe for them. So they figure if they get in late somewhere and there's just not enough time, they've got some kind of protein source.

We now bought this funny little egg cooker that you plug it in and it cooks eggs. So they just get raw eggs when they get to town and they, they use those.

So they have a few funny, I call them funny little staples.

They do not call them funny. But do you have any kind of staples that you travel with like that?

Jenna: I mean, not really. Just because like I said, for me my food is so limited. But I will say one of the things that I guess I've just traveled a lot in my life and even before I had allergies, I would always like bring my own food to the airport.

My family is one of those people that was like, we don't eat airport food. Even though airport.

My parents were just like that. They would just be like, oh, we're bringing food, like sandwiches or whatever it was.

So I got very used to doing that and I didn't realize how many people thought that you cannot bring food through security.

The only time I've ever had issues is like in the UK for some reason, like UK And Europe is a bit more particular about things. But whenever I've had a doctor's note, it's been absolutely no problem.

So I just suggest getting a doctor's note either way. But my two biggest tips for that is frozen ice packs.

Yes. Your bag will always get pulled through for a second check. Because I was told one time that on the X ray machine, they can't tell if liquid's frozen or not.

So they pull it out because it looks like liquid. But when they see that it's frozen, most of the time it's absolutely fine. And if they're made, they make an issue.

I just asked to speak to the manager and the manager's always like, yeah, if it's frozen, it's fine. So frozen gel ice packs for cold food and then for hot food,

a double walled insulated container. So when you have a metal, aluminum, whatever container,

if it's double walled, that insulates the heat. And my biggest tip for that is pour boiling water into it first. Because if you don't, it's cold and then you put your hot food in it and it takes all of the heat out.

But if you pour hot water in it first, then it's hot. When you put your food in, that heat's already insulated in and the temperature's already been acclimated and then it doesn't take heat from your food and it stays hot surprisingly long.

Caroline: That is a brilliant suggestion.

My daughter went to Korea and we live on the west coast.

She did not eat the entire flight. She just didn't want to eat, or I shouldn't say she didn't eat. She had some snacks and I think she had a sandwich.

But then coming home,

she barely had any food. And these are fantastic suggestions. I didn't even think about the ice pack or the hot food, of course.

Do you see differences in flying and traveling domestically versus overseas?

Jenna: I mean, no. Leaving the U.S., whether it's internationally or domestically, like from the U.S., I've never really had issues. Like I said, the only time I've had issues with the whole ice pack thing has been in the UK and some places in Europe.

They're like, you're not allowed ice packs unless it's for medication. Which now I've got a doctor's note. They usually don't make an issue.

And also I put my medication with the food and then what are they gonna do? Make me, like, take the food out next to my medication.

Caroline: These tips have been great and the time has just flown by. So before we say goodbye, is there anything else you want our listeners to hear from you?

Jenna: I'd say just don't be afraid to try new things,

you know, even if it's doing a small trip first or going somewhere where you know that you'll be able to find food.

And like I said before, don't feel like you're a burden for getting your needs accommodated. As long as you're pulling your weight and putting in the effort,

being respectful and communicating like it is a need and it's not a preference,

you have the right to have that met.

Caroline: Thank you for these brilliant tips. Truly.

Everyone can use these for food allergies or any other health condition. I think they're just rock solid. Thank you so much for your time. Enjoy your current trip and hopefully we'll see you next year again in Chicago at the Food Allergy Summit.

Jenna: Thank you so much, Caroline. I always love chatting with you and yeah, definitely be at the Summit next year. So anyone listening, if you want to come hang out with us, come to the Summit next year.

Caroline: It is a good time and educational and the food's good, so we'll see it. Thank you, Jenna.

Before we say goodbye today, I just want to pause for one more moment to say thank you to ARS Pharma for being a kind sponsor of FAACT's roundtable podcast. And please note, today's guest was not sponsored by or paid by ARS Pharma 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.