Caroline's Story: When Food Turns Fatal

Summary

The Medical Detectives: Caroline's Story — When Food Turns Fatal

Episode Release Date: January 22, 2025

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Introduction

In this gripping episode of The Medical Detectives, host Anna O’Brien and orthopedic surgeon Dr. Erin Nance delve into Caroline's harrowing journey with severe food allergies and the mysterious medical condition that turned her life upside down. Through candid conversations and firsthand accounts, Caroline shares her struggles, triumphs, and the relentless pursuit of answers in the face of life-threatening reactions.

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Early Life and Initial Allergic Reactions

Caroline’s story begins with a seemingly ordinary childhood disrupted by unexpected medical emergencies. Born a healthy baby, Caroline experienced her first severe allergic reaction at just two years old.

[02:03] Caroline: "I was born a happy, healthy baby... Until I was two years old, I randomly had an anaphylactic allergic reaction to crackers with traces of nuts in them."

Her parents, unprepared for such severe allergies, quickly adapted by acquiring multiple EpiPens and meticulously preparing her meals to avoid allergens. Over time, Caroline outgrew many of these allergies during her elementary school years, allowing her a bit more freedom with her diet.

[04:46] Host: "What were your first memories of understanding that you had an allergy?"

[04:52] Caroline: "The first thing that comes to mind is going to people's birthday parties and bringing my own food... a bright red penny that said, 'Do not feed' on one side, and 'Allergies' on the back."

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Navigating Allergies in Adolescence

As Caroline entered adolescence, her allergies became manageable, allowing her to lead a relatively normal and active life. However, her first significant challenge arose during a high school relationship.

[08:18] Caroline: "For the first time in my life, I experienced being gaslit or invalidated about my allergies."

Her boyfriend dismissed the severity of her condition, leading to Caroline feeling ashamed and less vigilant about her allergies. This laxity culminated in a severe anaphylactic reaction during her freshman year of college.

[09:06] Dr. Nance: "I need that shirt, but just the front."

[10:28] Dr. Nance: "And literally, that's what happened."

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Freshman Year: A Medical Mystery Unfolds

Caroline's freshman year at Holy Cross College was marked by recurrent anaphylactic reactions without identifiable triggers. Despite her meticulous efforts, the causes remained elusive, leaving both Caroline and the medical staff baffled.

[17:13] Caroline: "I felt immediate relief from the EpiPen... But I was still having reactions without a clear cause."

Her experiences led to multiple hospitalizations, each visit to the ER more confusing than the last. The uncertainty and lack of answers took a significant toll on her mental and physical health.

[20:08] Caroline: "I was back home, and my boyfriend came over to visit, and he kissed me... and within two minutes, I went into anaphylaxis again."

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Diagnosis and Hope: Understanding Mast Cell Activation Syndrome (MCAS)

After months of uncertainty, Caroline and her mother sought specialized care, leading to a pivotal diagnosis of Mast Cell Activation Syndrome (MCAS) in April 2018.

[37:20] Host: "Mast Cell Activation Syndrome is like having your body's police force go into overdrive, causing havoc instead of protecting you."

Dr. Maria Castells, a renowned specialist, provided Caroline with a clear diagnosis and a treatment plan, offering much-needed validation and hope.

[38:12] Caroline: "Mast cell activation is related to a bunch of different things... It really depends on the person."

With this diagnosis, Caroline began managing her condition more effectively, introducing medications that helped stabilize her reactions and regain some normalcy in her life.

[40:52] Host: "And when you got the diagnosis and you said, you felt relief, did it help also with your relationship with other people that now you had something to tell them?"

[41:08] Caroline: "Absolutely. I could tell them what I had. They could Google it if they wanted to... I could advocate for myself better."

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Sophomore Year and Continued Struggles

Although Caroline made progress, her journey was far from over. A trip to the Caribbean resulted in another severe allergic reaction, further reducing her list of safe foods and pushing her health to critical levels.

[45:29] Dr. Nance: "Love that we replaced the toxic boyfriend with a supportive friend."

Her continued struggles led to significant weight loss and discussions about more invasive treatments, such as a central line for Total Parenteral Nutrition (TPN). However, Caroline’s determination and the support of her medical team eventually led to a breakthrough.

[53:41] Dr. Nance: "So you really do only just eat oatmeal and formula."

[53:44] Caroline: "It was kind of like my thing."

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Finding Normalcy and Advocacy Through Social Media

After overcoming numerous medical challenges, Caroline discovered a powerful outlet for her experiences: social media. By sharing her strict diet and daily life, she connected with a broader community, providing support and raising awareness about MCAS.

[58:08] Caroline: "You take 100 milligrams of Benadryl every night... We need to decrease your dosage."

Her most-watched video showcased her navigating a restaurant with her boyfriend, highlighting the practical challenges of living with severe allergies while maintaining a semblance of normalcy.

[64:10] Caroline: "I can't drink from communal glasses... But I was still out at this beautiful restaurant with my amazing boyfriend and watching a beautiful sunset."

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Looking Ahead: Hope and Resilience

Caroline remains optimistic about expanding her diet and improving her quality of life. She continues to work closely with her healthcare providers, experimenting with food trials in hopes of reintroducing more foods safely. Her plans include ambitious projects like converting a van into a mobile safe space, symbolizing her resilience and adaptability.

[66:38] Caroline: "I'm very hopeful and optimistic that I will eventually be able to expand my diet... I'm working with my doctor and other health professionals to food trial."

Her journey underscores the importance of self-advocacy, the value of a supportive family, and the power of community through shared experiences.

[65:42] Caroline: "You were really, I think, a shining example for them."

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Conclusion

Caroline's story is a testament to the complexities of living with severe allergies and chronic medical conditions. Through relentless perseverance, support from loved ones, and advocacy, she has transformed her life from one of fear and uncertainty to one of hope and empowerment. Her narrative not only sheds light on the medical mysteries surrounding MCAS but also inspires others facing similar battles to seek answers and advocate for their health.

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Notable Quotes

• [00:44] Caroline: "I've been stopped in the street... feeling seen and feeling heard kind of for the first time."
• [03:53] Caroline: "Annual allergy blood tests to objectively see how I was doing as a child."
• [13:35] Dr. Nance: "We're often taught that these moments where we advocate for ourselves and our health are sometimes difficult or being inflexible."
• [14:25] Dr. Nance: "This is not your fault. You were in a situation where you were repeatedly reminded that your needs were difficult."
• [37:20] Host: "Mast Cell Activation Syndrome is like having your body's police force go into overdrive, causing havoc instead of protecting you."
• [53:44] Caroline: "I learned to love it. My friends always joke that, like, they should replace, like, the Quaker oats head with, like, my head 100%."
• [65:42] Caroline: "You were really, I think, a shining example for them."

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Caroline's journey, as recounted in The Medical Detectives, offers a profound exploration of the intersection between medicine and personal resilience. Her story highlights the often-overlooked struggles of individuals with severe allergies and chronic conditions, providing both empathy and inspiration to listeners navigating similar challenges.

Transcript

[Caroline]

Foreign.

[Dr. Nance]

So before we even started recording today, I just was talking because I'm still not skilled enough in the world of LE podcast to realize that it counts down before you go. So I gave you guys a wonderful introduction to this episode that unfortunately, you will not hear. So I'll try to make up for it in the future, but let's just segue into the reality of things. How are you doing, Dr. Nance?

[Host]

I'm still recovering from the response of our first and second podcast, which was just insane. I was getting stopped in the street.

[Dr. Nance]

You got stopped in the street?

[Caroline]

Yeah.

[Host]

Which is, you know, usually not a good sign for a doctor. Right? No, that's. That's not good. But no, I've just been overwhelmed by the response from. From all the listeners and all the people who are really feeling seen and feeling heard kind of for the first time.

[Dr. Nance]

Honestly, that's what we set out to do, and it feels so good that it's working. Like, I feel like there's just not a lot of places for these kind of discussions to happen. And I'm so glad that we get to be that place. Like, what a cool job. We're not making any money yet, but I'd like to say it's cool. It will be cooler.

[Caroline]

When we get.

[Dr. Nance]

You know what? Actually, I would do it even if we didn't make money, because that's not what it's about. But, you know, money is nice. Let's. Let's not lie. I got medical pills.

[Host]

Well, I'm super excited to introduce our next interviewee. And I would say imagine that you have a food allergy, but on steroids.

[Dr. Nance]

That sounds terrible, but I'm intrigued. So let's jump in.

[Host]

Here we go. Let's do it. Hi, Caroline. Welcome to the Medical Detectives.

[Caroline]

Hi. So glad to be here.

[Dr. Nance]

So tell me a little bit about yourself, Caroline. Let's just jump right in. I can't wait to hear about your story.

[Caroline]

Yeah, absolutely. It's a bit of a roller coaster, so strap in. But it all kind of starts from. From day one. I was born a happy, healthy baby, which is great. Until I was two years old, I randomly had an anaphylactic allergic reaction to crackers with traces of nuts in them, which, looking back on now, was really the first incident or hint to what I would later be diagnosed with. And this was totally shocking to my parents because they had no idea I had developed allergies. And I don't remember any of it, but apparently it was really, really horrifying. You know, I blew up Like a balloon. My throat got super tight. So I was just kind of. All I could really make out was like, screaming whistle notes. And they got me to the hospital just in time. So they called 911, the ambulance came and all of that. And I was intubated and tested for allergies, and a few weeks later discharged. And I had, you know, all these new allergies to foods. And this was something that my parents had never had experience with. I feel like it's kind of a generational thing in terms of we're seeing, you know, the younger and younger generations have more and more allergies. But props to them, they adapted right away and they learned everything they could about allergies. They immediately got as many EpiPens they could. And my mom was hand making and home cooking all of my meals, and I was really only able to tolerate a few things. So we're talking like she was hand cranking potato pasta and I was just only able to eat a few vegetables. But over the course of elementary school, I outgrew a lot of those allergies, which was great. So I was able to, you know, have fruit and vegetables and all sorts of. Can I. Yeah, sorry, I'm just.

[Dr. Nance]

I'm just bumping in because I have a quick question. So you had the allergic reaction at 2, right? And then how long was that, like, food sensitivity for? Until you were about five. Is that what I heard correctly?

[Caroline]

Yeah. Yeah. So basically when I. I'd say around first grade, I started outgrowing allergies.

[Dr. Nance]

How did you find that out? Like, how did you. Cause, like, I would be terrified if I were a parent and my child had just had anaphylactic shock and went into the hospital. Like, how. How did your parents get brave enough, I guess, to let you eat anything other than the potato pasta? Because I. I would have, like, I would captured you so hard.

[Caroline]

Yeah. So they didn't. They got me an allergist. And annually we would do allergy tests. And it started with blood draws. So some people do like a skin prick test and, you know, you'll see how big the hives get. And that kind of indicates how allergic you are to that specific food. But for me, it was, you know, blood tests kind of from day one, just because I was so reactive. So the answer to that would be annual allergy blood tests to objectively see what, how I was doing as a child.

[Host]

What were your first memories of understanding that you had an allergy?

[Caroline]

I think the first thing that comes to mind is going to people's birthday parties and bringing my own food. And so my mom did a great job of getting a really cute cake container that I could bring my own homemade cupcake or. I always had a bag on me. I've always, always, always left the house with a bag because I need my EpiPens, I need my Benadryl. And I think that those kind of early years, I'd say like kindergarten, but actually now, now that we're kind of discussing it, an earlier memory would be when we would go to the gym with my mom, we being like me and my siblings, and she would work out for an hour and, you know, drop us off at the daycare at the gym. And she would have me put on this bright red penny that said, do not feed on one side, and then allergies on the back.

[Dr. Nance]

I was going to say, I need that shirt, but just the front.

[Caroline]

Like, same.

[Dr. Nance]

Can you just imagine, like, walking down the street. Do not feed.

[Caroline]

Like a petting zoo.

[Host]

Better than a dog.

[Caroline]

So I think that would have to be the earliest one, and that was pretty foolproof, you know? Yeah.

[Host]

And, you know, I have a young daughter and a couple of her friends have significant nut allergies and bee sting allergies. And I think a lot of the. The fear for the parents, right, is that they. They try and control things as much as they can.

[Dr. Nance]

Right.

[Host]

The environment and the food. But it's just so scary. Scary when you send your kid off to that field trip and you hope that nobody brought the peanut butter sandwich. Right. How would you describe if. If you knew kind of what your parents were experiencing and how you experienced that as a child yourself?

[Caroline]

Yeah. I think for as long as I can remember, my parents have instilled in me to be loud and proud about my allergies. And really just another word for that is advocating. So when I think back to kind of tangible examples of that, I'd say it was her marching into the elementary school with me before my first day of kindergarten and saying, this is my daughter. She has anaphylactic allergies to these things, and she cannot be sitting with all the other kids at the cafeteria at their lunch tables. We don't know what they're packing, so we need to create an allergy table. So I was the first member of the very important allergy table. It was kind of like a VIP lounge. You had to get, like, an invite and you had to get patted down and make sure that your lunch did not contain any allergens and everything. But throughout the years of elementary school, Slowly but surely, more and more kids needed to be seated at the allergy table as well. So I think, in terms of. Everybody knew that I had allergies, and that was really important for my parents and also for me. So I think that fear and advocacy were probably the biggest staples. So my adolescence and teenage years were really normal. It was just the fact that I had a handful of food allergies at that point. But life was good. I was very active. I graduated high school and was recruited to row out of college. And I was just really looking forward to. Yeah, so, like, crew. Yes. Rowing. Yes. Like, on the water in a boat.

[Dr. Nance]

Okay, that's cool.

[Caroline]

Yeah. And I live in. Like, I live in the suburbs of Boston, so, you know, rowing on the Charles river every day or five days a week for practice was a dream. So I was dating a boy, senior year of high school, and for the first time in my life, I experienced being, I believe, gaslit or invalidated about my allergies. So basically, the first time that we went out to dinner together, I gave the restaurant and the waiter my whole spiel and saying, very severe allergies. Can't do any cross contamination. Like, I will take the plainest thing on the menu. And after the waiter walked away, my boyfriend said, like, I feel like you're being a little bit dramatic about that. Like, I know other people with allergies, and they don't make this much of a big deal out of it. Like, why do you do that? And, you know, it was kind of out of curiosity, but it made me feel bad. It made me feel like I was doing something wrong. And at that point, I was falling in love with him, and I was young and dumb, but we've all been there. I basically was like, well, I have really severe allergies. I can't even do skin tests. We have to do blood work. And I had given him the whole spiel, too, at the beginning of our relationship, how he couldn't have any of my anaphylactic allergens within 24 hours of kissing me. Or maybe just the day of, if we need to be a little bit more flexible. And then, like, ideally, if he could brush his teeth before, that'd be great. So I started noticing little things like his teeth or his mouth wouldn't really smell like. Like toothpaste or mouthwash, which was different, because in the beginning it did. And I brought it up to him, and I said, are you brushing your teeth before we kiss and before I see you? And he's like, yeah, like. Like, I don't know. I can't always remember to do it. So, you know, I took it into my own hands, and I said, okay, that's fine. Like, I'll get some mouthwash, and you can just swig that beforehand. And so I got a little travel bottle of mouthwash, and I would ask him to do it, and he'd say, oh, it's like. It's so spicy and gross. Like, I hate the taste of it. And I'd say, okay, I'll. I'll do it with you then. And it was just these little small infractions that kind of added up over time. And I think what happened was I became.

[Dr. Nance]

It was trash. I mean, that's what happened.

[Host]

I mean.

[Dr. Nance]

Sorry. I do not like this, man.

[Caroline]

Hey, you know, your words, not mine.

[Dr. Nance]

I will own them. You could get a little spicy in your mouth if you want to get a little bit spicy later. That's all I'm going to say.

[Caroline]

Yeah, so I got a little too lax about my allergies. I let my guard down. I really hate how much he influenced the way that I operated, because I was so good and I was so regimented. And, yeah, I don't know, I feel like I developed this new kind of shame, feeling kind of weird or embarrassed about it. So I think that that altered the way that I handled things. And, yeah, I just got kind of sloppy. So going into my freshman year of college, it was like, literally the first weekend, and they had a student athlete event where, you know, all the teams were there and all the upperclassmen were there. So you're a nervous freshman trying to make a good impression. And there was all these food trucks. And I remember distinctly recognizing one of the food trucks that I had had, like, a year or earlier in that year. And I checked the ingredients. It was an ice cream truck. Checked the ingredients. And I was like, okay, I know that I can have that thing from that menu because I've had it and I've asked and everything, and so I won't have to ask them if it's, you know, what the ingredients are, because I want to make a big deal, and I want to call attention to myself, and no one's going to think I'm dramatic. So that's exactly what I did. I ordered the same thing that I had gotten a few months prior, and I should have said, I have allergies. Can we please make sure there's no cross contamination? And given my spiel that I had given a hundred, hundreds of times, and I didn't And I took a bite out of the ice cream and immediately started going into anaphylaxis. So that was a really interesting experience because I had never. I didn't know what anaphylaxis felt like because I hadn't gone into anaphylaxis since I was two years old. But I just remembered this head rush and then feeling my throat start to tighten. And I looked at my friend who was a freshman who also rode on the same team as me in high school. So we knew each other well. And I said, oh my God, I think I'm going to anaphylaxis. And so she sat me down and I took my EpiPen and yeah, went straight to the hospital. So it was kind of this gut feeling that it couldn't have been anything else. It was that kind of itchiness, the head rush, the tightening. And I just knew that I had to take my EpiPen. And it was scary because, you know, I'd practiced with the practice EpiPens before, but actually putting the needle into my leg was the new experience.

[Dr. Nance]

I feel like we have to acknowledge here just because I know there's a lot of people listening who probably really relate to this idea of when you have a condition. You know, self care can feel selfish because it is sometimes all encompassing. Right. I just, I feel like I need to call that out because I feel like we're often taught that these moments where we advocate for ourself and our health are sometimes difficult or being inflexible. And I think that that's a really important narrative that we need to change. And I don't have any answers on how we change it, but I just wanted to call attention to it because it's something I've honestly been thinking about myself a lot recently.

[Caroline]

Yeah, I think that one way that we can combat that is just talking about it. And I've certainly, I've stayed quiet about that part of my story, honestly, for, you know, I started posting about my journey in March of 2024, and I did not mention anything related to the ex boyfriend story until probably a month ago for a few reasons. One, like we had to get a lawyer involved when we broke up because there was a lot of like, cyber stalking and threats and all of that. So I was just scared as right place out. Yeah, many women are and unfortunately can relate to that. But also I was ashamed too, and, you know, feeling like I didn't want to blame him because looking at the facts, like it was my fault. Like, I. I didn't Say, oh, I don't like.

[Dr. Nance]

I'm not gonna let you say that. I'm not gonna let you say that because I feel like that that isn't fair. You were in a situation where you were repeatedly reminded that your needs were difficult. I don't want you to put that blame on you. That is. And I, I'm not a doctor, I'm not a therapist, but I can tell you that is not your fault. And you were like 18 years old and this is all you'd ever known. And this one person you loved wanted you to change this part of yourself so they could completely in love with you. Right? And I just, I've been that girl and we've all done that. And that is just part of growth. That is not your fault. And I'm, I'm sorry. I'm not gonna let you say that on here.

[Caroline]

No, thank you.

[Dr. Nance]

Not gonna let you do that.

[Caroline]

I appreciate that. I, Yeah, I think it's something that I'm like, it's a part of my story that I, I still struggle with, but I know that it will do more good to just talk about it to help anybody else who's maybe feeling like they're in a civilization similar situation or if they, you know, get into a similar situation, they can recognize it.

[Host]

And as a parent, when I talk about that control issue and trying to control the environment for your child and remove all of the possible, you know, barriers that can come your way, in the end, you are living by yourself, right? You're, you're in college and you can only hope that the systems you had put in place, where it was just part of your everyday to bring your EpiPen with you, like, that's, that was the win. Right? You did save yourself and you saved yourself because you had built up this consistency, right, of checking things. And so it really is a testament to, as I said, that consistency that you built up, that your, your family and your friends and your support system, you know, did that. And I'm just glad that again, you know, you're gonna come across people like your ex boyfriend who will make you doubt whether you need to do that or that's necessary, make you feel bad. But in the end, you were the one who saved yourself.

[Caroline]

Thank you. Yeah, that's honestly really therapeutic to hear. And I really appreciate that kind of outside perspective because I think I also have a tendency to want to take control of my life and I don't want to be a victim of my circumstances. So oftentimes I'm like, you know, this happened to you because you didn't do xyz. So what are you going to do to, you know, make it better? But when you say that, I always forget. There was a football player that same day who also had nut allergies, who also ended up in the hospital, who also ate from that exact same ice cream truck. So I'm not sure exactly what the. His story is in terms of what he spoke with them about, but that's a little detail that I tend to forget.

[Host]

Well, Caroline, so now you have had your second major anaphylactic reaction. Take us through. You went to the er. What happened when you were there?

[Caroline]

Yeah, so I felt immediate relief from the EpiPen. So it worked. And that was all I needed, which is great. Went to the er, they got me hooked up just in case I needed extra IV Benadryl or something like that. But the protocol when you have an allergic reaction is just to keep you for six hours, monitor your vitals, make sure everything looks good. So. So I did fine within six hours. Nothing else flared up. So they released me and I went back to school. I remember the next morning I woke up at like 5am and I remember just feeling this kind of like overwhelming tightness in my throat and my chest. And I just kind of wrote it off as like, oh, it's probably my reaction just still kind of triggered. But maybe it's not a big deal. Maybe it's just anxiety, honestly, but it was just getting worse throughout the lift. And then the feeling never went away for a few days. And then my boyfriend, my ex boyfriend, came and visited that weekend and he kissed me. And I didn't immediately go into anaphylaxis. But a few hours later, after I ate some stuff and like, I don't know, drank some water and who knows, I did end up going into anaphylaxis again. And it was to something that I had eaten several times before, like in the weeks prior that I had had throughout my whole life. And I wasn't convinced that it was cross contamination or anything like that. Had to take an EpiPen, like ambulance to the ER again. And my mom came out to visit again and she said, like, what's going on? I was like, I have no idea. Like, honestly, I didn't eat anything that I'm allergic to. I checked the ingredients. Like, I, I know that it wasn't the food. And then a few days later, I was only eating single ingredient foods at college. I was eating just from the allergy kitchen, which was an amazing resource that the college provided to anybody with allergies and was just feeling those allergic symptoms, ended up going into anaphylaxis again. I can't remember what I ate that made me go into anaphylaxis. But my mom came out to the ER again, and luckily, also, I should say that we. My hometown is only an hour away from the college that I went to, so very accessible, which is great. But she basically, as soon as I was released, she brought me back to our house, and she was like, we need to figure out what's going on. Like, we're going to go see your allergist. And at the time, these ER doctors didn't really know what was going on. I told them, yeah, I was just here, like, last week with these allergic symptoms, with this allergic reaction, and they were basically like, okay, I think it's a heightened immune response, like, but we're not really sure. Just try to, like, really try to just be really safe about the food that you're eating and that kind of thing. So I kind of felt like I was going crazy a little bit because I didn't know what was causing it, and I became very scared.

[Host]

Do you think the physicians thought you just weren't paying enough attention to what you were eating?

[Caroline]

Possibly. I think that is probably what they thought. I mean, I was just like, a freshman who was at college for the first time, and who knows? Maybe I was stressed out or maybe I wasn't being careful about the dining hall or. Yeah, I don't know. So, yeah, I was back home, and my boyfriend came over to visit, and I ate dinner, which was totally safe, homemade, like, single ingredient. And I did okay with that. And then he gave me a kiss, and I was like, whoa, whoa, don't kiss me. I don't know what's. What's causing me to have these allergic reactions. And then within, like, two minutes, I went into anaphylaxis again.

[Dr. Nance]

And literally toxic for you. He's literally toxic.

[Caroline]

I think I was allergic to him.

[Dr. Nance]

Yeah. Yeah.

[Caroline]

Well.

[Dr. Nance]

And, yeah, your body was like, you're not going to recognize. We're going to make it real obvious.

[Caroline]

Yeah.

[Host]

Boyfrienditis.

[Caroline]

Yep. Oh, my gosh. When I was in these episodes of subsequent anaphylaxis, going into reactions where I wasn't really sure what was triggering them, and I was being super safe about what I was eating and all of that. Oftentimes I was seeing, you know, different EMTs, but I was getting familiar with the emergency room doctor because I was ending up in the ER multiple times in the span of just a month. And she really didn't have any answers. All she could really provide me was, you know, refilling my EpiPen prescription, offering Benadryl, and keeping our fingers crossed that these reactions would settle down. And, you know, at first, she hypothesized that maybe I was stressed. You know, it was my first month at college, and I was also exercising a lot because of the rowing team and a whole host of things, that maybe it was a perfect storm. Perhaps there was mold in the dorms, or, you know, it could be all these different factors, which was all just to say, hey, I'm not really sure what's causing this. Hopefully it'll go away. Which was invalidating in a sense, but also scary because nobody could explain what was going on. So this is all just to say that September and October of my freshman year, I was basically in and out of the hospital a bunch until middle of October. When I was home, he'd kissed me. I ended up in an ambulance. I ended up in Boston Children's Hospital, told him the whole thing, and they, you know, believed me right away. And they said, okay, like, you're going to the icu. We need to figure out what's going on here. So I was at the ICU at Boston Children's for about two weeks in October. And there we deduced that I was triggered by food. So anytime I ate was really when we were seeing the MAST cell symptoms or the allergic reactions happening. And it was just food trial after food trial, which is basically like, you know, trying a small bit of a single ingredient food, seeing if you can tolerate it, seeing if you have any allergic reactions. And then if you tolerate it, great, Then you slowly increase the amount. If you don't, then you, you know, move on to the next food. So food after food, I was failing. I was losing weight, losing energy. I was so confused. I was so scared. And by the end of the two weeks, I was only able to tolerate oatmeal, eggs, and bacon. But the overwhelming consensus through all the doctors who were doing rounds and all the nurses and everything was basically that this should go away in a couple months. And if it doesn't, then I might have this thing called mastocytosis. But I would need to get, like, a specialist to get that diagnosis. And that takes a few months. But honestly, if I just take some antihistamines, it'll probably go away in, like, two months. So in the fall of 2017, my freshman year of college, when I was having these repeated anaphylactic reactions. I really didn't have any answers. All I knew was that there was three foods that I wasn't having allergic reactions to and that I should take some antihistamines. And that was kind of the direction that I had at that time.

[Host]

So, Caroline, this is your freshman year of college, right? Not ideal to be going in and out of the ER when you're trying to go to frat parties and football games and your own varsity sport. So tell us what it was like being a college student and having a severe illness.

[Caroline]

It sucked a lot. I think that also my expectations for college were really high. For one thing, my mom also went to the college I went to. It's called Holy Cross. And she had an amazing experience. She had so many hilarious stories, and I just knew it was going to be the best four years of my life. I remember on my official visit for rowing, calling her. When my host went to use the shower, I called her. I said, mom, this is the one. I'm coming here. This is the school for me. And it all just felt like all the pieces were coming into place. I felt like I was going to meet my best friends, make the best memories. So I think to have the realities of chronic illness and the shock of getting sick immediately hit within the first week of college was really, really difficult because everything that I was excited for was no longer on my radar. Rowing, which was arguably the most important part of my life in high school, became such an optional frame of mind for me because somebody who was concerned about what their VO2 max heart rate could be was now concerned with just trying to breathe and doing body checks on how tight is my throat right now? Is my tight. Is my throat tight enough for me to take an EpiPen? Do I think I can get by with a Benadryl? How about just a puff of an inhaler? I completely felt foreign to my body. You know, I was somebody who had heard from multiple coaches that the worst that can happen is you pass out on the erg, which is the rowing machine, and, you know, we pick you up and that's it. Like, your body will tell you when it's too much to now. I was somebody who. The smallest piece of food, which I thought was safe, could kill me. So it became. It was like. I. Gosh, I don't even really know how to describe it. It was like I had a. It was like somebody just completely threw out the whole book of my life and was like, actually, we're starting new and you're not going to know Anything about your body, you're going to lose your capacity for socializing and lose your curiosity and excitement for life. You know, I really became scared and, honestly, depressed. My freshman year was probably the hardest year of my life. I was waiting to see a specialist for about eight months. And during that time, I was really holding on to hope that things would get better. And they weren't really getting better. And I was also trying to just keep up with my classes. I was trying to keep up with if I saw somebody that I recognized smiling at them, even if that was not what I had the capacity to do. Anytime that I had saw somebody that knew me and they'd say, oh, my gosh, how are you? Like, I haven't seen you. And trying to figure out how much I should tell them, because at that point, you know, I commuted back and forth from school my entire freshman year with my mom. I was lucky enough where, you know, she didn't work at the time, so she was able to drive me back and forth. But I really felt like a ghost. So, you know, all the little interactions that you have with people, like in your hallway or in the communal bathroom or going to the. The mail office, I didn't have any of those experiences because all I was doing was willing myself to get out of the car, kind of walking into class, feeling like I was made of concrete, and then sitting down and trying to focus on a lecture while I felt like my throat was tightening or while I felt like my face was flushing or while I was trying to hide the hives all over my chest. So I was really, really just trying to kind of make it through each day and surviving. Yeah, exactly. Surviving.

[Dr. Nance]

Surviving.

[Caroline]

Yeah. So I didn't have the luxuries of worrying about who liked who or where the next party was or if the coach was being really hard on the team, or all the problems that I thought I was going to have were absolutely minuscule.

[Host]

I think that is so relatable to so many people, kind of no matter how large your illness or disability is. Right. Is that that feeling of being left out? And what was interesting is that when you were younger, you were able, probably because of the help from your parents and support system, make it seem like that was a special, unique thing for you, and now you're more on your own and you feel the weight of those differences and being left out. Now, obviously, you also were much sicker at the time, so it's a whole nother thing to deal with. But I think for a lot of kids who are going to College and just the fact that they are going is an achievement. Right. I've spoken to more than a few high school seniors who have pots and they, they don't even think college is in the cards or living by themselves is. Is even possible. So just to hear your story that you were still doing it, right. It might not have been what you thought it was going to be, but you, you still did it is still an inspiration to a lot of people.

[Dr. Nance]

Agreed.

[Caroline]

Thank you. I think. Yeah. And I think, I mean, it's totally like my circumstances helped a ton. Like, I think if I went to school, you know, even an hour further away, I might have taken my freshman year to just focus on my health. But it was the fact that my mom made herself available so quickly. She said, like, we can do this. If you want to do this, I will help you do this. And I also credit my siblings. You know, I have two younger siblings who were in middle school and high school at the time, and they lost their mom that year, you know, in a way because she was getting up with me at 6am to get me to my 8am on time. Sitting at campus all day without a complaint. We would get home at like 8pm it was just crazy. So I also don't know how she did it. She's the heart and glue of this house and she kept on keeping on. And I think that that is where I learned how to do that. And I wouldn't have been able to do it without her. But yeah, I think my freshman year, I am really proud. I only dropped one class and I stayed as optimistic as I could in front of other people. I think that's all I kind of had the capacity for. But I am proud of myself for finishing that year for sure, and I'm glad that I did. But it could not have been done without the help of my family.

[Dr. Nance]

And now I'm crying because the mom, your mom is just an angel.

[Caroline]

Yes.

[Dr. Nance]

I'm so glad you had that support. I'm so glad that she was there for you.

[Caroline]

Yeah.

[Host]

All right. So you've now had multiple anaphylactic reactions. You are getting by, you know, with your EpiPens and Benadryl and inhalers. But what happens next?

[Caroline]

Louder than anybody else. My allergist was the doctor who said that this could probably be mast cell activation or mastocytosis, and we need to get it checked out and diagnosed by a specialist. I saw her after an eight month waiting period. And my allergist had also given us a heads up that it could be over a year. So when we heard it was going to be eight months, that was kind of better than we anticipated. And I also was. In the back of my mind, I had also had the voices of, you know, the ER docs or people who weren't really sure what was going on, that this might go away in a couple months. I might be totally fine. You know, I might end up just canceling the appointment. So I wasn't waiting for that to be my saving grace. So this is the spring of my freshman year, gearing up for finals, and I was so ready to be done with the year. There had been a couple times where, you know, in the spring semester, I had to leave class and just cry in the bathroom because I was so exhausted and just so tired of, you know, muscling through it. So tired of my diet, so tired of not having friends, and so tired of not knowing how to explain what was going on. You know, people would. People knew, obviously. Freshmen. All of our fall of freshman year, I was in and out of the hospital in between all the anaphylactic reactions in the fall and then actually seeing the specialist and getting the diagnosis in the spring. My mom and I were definitely playing detective. And I remember compiling a list of all these potential diagnoses so I could ask the doctor if it was this. Okay, if it's not that, then is it this? And just kind of go through those lists because I wanted an answer and I wanted a diagnosis. Even if it went away in a couple months and everything was resolved, I wanted to know why it was happening in the first place and if they could deduce why it all started, too. Because I was kind of, I'd say, prior to the fall of 2017, the fall of my freshman year, I kind of operated under the assumption that you go to the doctor, they tell you what's wrong, they give you medicine, and you're cured, or at least you have relief. And I think I had a huge kind of loss of innocence or moment of reckoning when I realized my freshman year of college that they don't know. They don't always know what's going on. They don't always know how to help, even if they're trying their best. There are such things as medical mysteries. Throughout my countless hospitalizations that freshman fall, I had so. So many residents and nurses come in, look at my chart, get the debrief, and basically say, oh, my gosh. Wow, you're a unique case. Gosh, we don't know what to do with you. I've never seen anything like this. And that is. It's really worrying because you think that there's a precedent for these things. You think that, gosh, there must have been somebody before me who's come in here that you've been able to fix. I mean, gosh, these people were some of the smartest people. We're talking Boston Children's Hospital. That's a very, very highly ranked hospital with really, really good medical professionals. And to think that you are at kind of Pinnacle Care, but to still not have any answers is really, really terrifying because, I mean, gosh, what do I know? I'm just 18 years old. I hated chemistry in high school. Like, I. There's no way I'm gonna figure this out, right? So I think it's. It's really grim to watch countless medical professionals say how unique your case is or how mysterious or, wow, you're. This is a real. You're. You're stumping us with this one. It's like, shoot, I thought I was coming here to get some, but I really turned a corner for the better in April of 2018. April of 2018 changed a lot for me because that's when I got my diagnosis. So I got in to see Dr. Maria Castells, who no longer sees patients because she's doing full time research. But she is a huge name in the mast cell community. And I remember going into that doctor's appointment with my mom and being so ready to just like, I don't even know. We had so much. We had so much kind of frustration and anger built up, I think, from all those past ER visits without getting many answers that we were going to leave there with an answer. And she basically did a clinical examination. She told me all the tests she was going to run. And she said, you know, we haven't even done the test yet, but I'm pretty confident that you have mast cell activation. And I'm going to put you on this medication. This medication, you know, this is a mast cell stabilizer. This is an antihistamine. Like, these are things that have been proven to work. And she basically also took the time to explain mast cell activation to me. And I had spent the fall and the winter with my mom Googling and going on Facebook, support groups, anything from mastocytosis to eosinophilic esophagitis to anxiety or like, asthma. It was just. It could have been a whole range of things. And for her to sit down and say, this is mast cell activation syndrome was extremely validating. My mom and I Both started crying. Actually, it was a mixture of, okay, the relief of, you have a diagnosis, you have answers, and we have a treatment plan. But also in the same sentence, she said, this is a chronic condition. There is no cure, but there are things we can do to help you live a better life.

[Host]

So I want to give kind of a little analogy for people who might have never heard of mast cell activation syndrome, or MCAS as sometimes people call it. But it's like if you have a friend who comes over and they want to help clean up after dinner, but instead of just washing the dishes, they start vacuuming the floor and dusting the whole apartment and they're doing too much for no reason. Right? And that's basically what is going on in mast cell. They're supposed to be helping you guard against infection, but instead they are just going off and, and causing, you know, havoc on your healthy body.

[Dr. Nance]

So is mast cell always food related or is it related to other things as well?

[Caroline]

It's related to a bunch of different things. So it depends on the person, depends on the patient. Bio individuality is alive and well when it comes to mast cell activation. For some people, they are most triggered by cleaning chemicals like bleach or laundry detergent. Other people are really triggered by fragrances like perfumes or candles. People are triggered by food, like me. I'm also extremely triggered by environmental allergens like dogs and cats and mold. So it really just depends on the person. And I'm not sure why exactly our triggers present so differently, but yeah, it varies.

[Host]

Yes, I interviewed a woman who was a allergic to water and had to live on iv, IV hydration. Just really, really awful, you know. And then the other kind of kicker is that you may not even know what will set off. So it's not as if you go, I know I have a strawberry allergy, so I'm not going to eat any strawberries. Right? You might have been eating strawberries your whole life and all of a sudden you eat a strawberry and now you have a reaction. So you can't predict, you know, what is safe and what's not. And that's what makes it so difficult to do, to treat.

[Caroline]

So that doctor's appointment was pivotal, I think, for my mental health, for my physical health. Basically, as soon as I started the medications, I felt relief and I was able to introduce more and more foods. And by the fall of that following year, so the fall of my sophomore year, I was eating basically all like single ingredient foods and back to school and back to living a more normal Life. So things got a lot better in April of 2018, and thank God they did, because I don't know what I would have done if I had to keep muscling through. And I know that in the scheme of when we're talking about the world of chronic illness, an eight month waiting period for a diagnosis is not long. People go like a decade without having answers. So I'm extremely privileged to be living near a medical hub like Boston and to be able to get in to see this doctor. But I think that it's. There's a lot of discourse around, you know, what if a diagnosis is good or bad or, you know, don't let the diagnosis define you and like, you are more than just your illness. But it's also, I think, really important to be validated and to have answers and to get the treatment that is subscribed for people with those conditions.

[Host]

And when you got the diagnosis and you said, you know, you felt relief, did it help also with your relationship with other people that now you had something to tell them?

[Caroline]

Absolutely. Absolutely. I could tell them what I had. You know, they could Google it if they wanted to. But also I had an elementary understanding of what mast cell activation was so I could tell them, you know, everybody has mast cells. They're just allergic cells and they're allergy cells and they're kind of like policemen. Like, they identify the bad guys, the pathogens, the infection, the allergen, and they attack them, they go after them, they arrest them. But my mast cells are special. They are working overtime. Kind of like you were saying earlier, Dr. Nance, they are doing the most. They are flagging down, pulling over every car, and we don't really know why. They can't give us a good explanation, but they're working overtime. And I basically was able to tell people that I'm receiving treatment that helps calm down my mast cells and help them know that they don't need to be triggered by everything. So going into my sophomore year of college, I really, I felt like myself again. I was not as symptomatic. I was on a lot of medications. I think another big thing was I was able to get a disability letter for accommodations. So for one thing, like, I lived in a single apartment dorm in college where I could control, you know, there was nobody in my bathroom using things that contained nuts. There was nobody using things in my microwave that would contain like, nuts or sesame or just any of my allergens. So being able to tell people what I needed was really pivotal as well. And to kind of not hold back when asking for accommodations. Like, for example, I do like an infusion once a week and an injection every other week. And those things make me really tired. And I sleep for like three hours after them. And I'm going to need an extension because, you know, that person had a few more hours than I did. And I can't pull an all nighter because it'll be detrimental to my health. So those sort of things. And the office of Accessibility at Holy Cross was really, really amazing with helping me with that and all my professors and everything. So sophomore year was a really great experience. I was able to be more social. I just had more energy. I felt like I was an advocate for myself, and I had answers, which was amazing. I slowly but surely got more comfortable and kind of, you know, was able to expand my bubble. So eating more and more foods, starting to go out to restaurants and ordering the safest thing on the menu, but being able to have that kind of normalcy, which was really nice. And yeah, I started to kind of have those normal college girl problems. Like, does this boy like me back? Oh, my gosh, this professor's being so annoying this week. Like, those luxuries was. It was amazing. Flash forward to the spring of my sophomore year, and I decided to expand my bubble a bit more and leave the country. So me and my friend went to the Caribbean and we went for Easter weekend because we have a nice long break with our Catholic school. So we got down there and we'd stocked up on a bunch of just safe food for me and made sure we were in, like, a safe place, that I wasn't allergic to anything there. And we went out to dinner that first night, and I told the restaurant about my allergies and gave them my whole spiel and then ordered single ingredient stuff on the menu. And I took like two bites of it and went into anaphylaxis. And that was one of the worst feelings ever. I knew exactly what was happening. And I was in a country that was so far away from my home, so far away from my doctors. And I took my epipen, was rushed to the hospital, and once everything was stabilized, I looked at my friend and she was there, right by my bedside. And I said, I just got my life back. This can't be happening. I can't do this again. And I was just devastated. And for me, that anaphylactic reaction was very similar to the one I had my freshman year, where it triggered a series of other anaphylactic reactions in which my list of Safe Foods was getting smaller and smaller. Granted, we didn't have the ex boyfriend, which was great. So we don't know, you know, maybe there was fewer exposures.

[Dr. Nance]

Love that we replaced the toxic boyfriend with a supportive friend. So, you know, at least we're in a slightly better situation.

[Caroline]

That's right.

[Dr. Nance]

Still terrible, but slightly better.

[Caroline]

That's right. And I basically was. Was relapsing. So the end of April and the entirety of May was very similar to September and October of my freshman year. So April and May of my sophomore year, I was in and out of the hospital having allergic reactions to more and more food, only down to a few foods. As soon as I got back home to Boston, I was trying foods to see if I could tolerate more and more. And I think the kind of oh, shit moment was I was tolerating watermelon okay for the first couple weeks after the Caribbean. And then my mom had gone grocery shopping. She came home with a watermelon, and I cut into it, and it was yellow. And I was like, oh, mom, did you know you bought a yellow watermelon? Like, I didn't even know those existed. And she was like, oh, my gosh, no, sorry. And I was like, it's probably fine. So I cut out a slice and I tried it because I was like, okay, this has got to be the closest thing to watermelon. Like, it's fine. I've been eating other fruits too. Like I was eating an apple or, you know, a banana a day, and I immediately had so much rashing and hives and swelling and just discomfort. Basically, I immediately had an allergic reaction. It wasn't necessarily anaphylactic, but it felt pre anaphylactic. And that was when I had a moment of, oh, my God, I'm really, really reactive right now. And then a few days later, I was trying to go to sleep, and I hadn't eaten anything in like six hours, but my throat just felt like it kept closing and closing. And I was. I just felt like I wasn't getting enough oxygen. So that's when I took the EpiPen and we went to the emergency room. And at that point, I was really only able to tolerate, like, sweet potato, carrots and oatmeal and chicken, I believe. So once I realized that, oh, my gosh, I'm not tolerating any fruit just because I ate the wrong watermelon. Like, shit, this is going downhill quickly. And my list of foods that aren't triggering me is decreasing quickly. And by June, I was only able to eat Oatmeal. By June of 2019, we were about a month and a half out of that reaction from the Caribbean. But I had had subsequent hospitalizations to other food that I was not allergic to, but was having anaphylactic allergic reactions to. And I was only tolerating oatmeal at the time. I was back at the ICU at Boston Children's, and they basically were like, we can't discharge you on this diet. Like, you're. You're just going to come back in being malnourished. And, I mean, even at that time, I'm five, eight, and I think a healthy weight for me is usually like 135 or 140. And I was down to like, 105. And I was bruising so easily. I was just gray. Like, I just looked sick. So they had started discussions about doing, like, a central line to just get the nutrients straight into my heart. But that was a really scary prospect just because there's the possibility for so many complications and you're just alone.

[Dr. Nance]

Is that a feeding tube or is that like something else, a central line? What is that?

[Host]

It's a. It can be a form of feeding. So you can either have feeding through your veins or through your gut. And so traditionally, people think of a feeding tube either, you know, through your nose or directly inserted into your intestine. But there is a form of nutrition called tpn, which provides the nutrients straight into your heart.

[Dr. Nance]

Oh, wow.

[Host]

Into the bloodstream.

[Dr. Nance]

Science is cool.

[Caroline]

Yeah. And the theory was I was clearly being triggered by digestion in some regard. So to kind of maybe pass over all of that and just go straight into the veins was the idea. But when we were talking about doing a central line, I was really scared about the complications and also how heavily I'd be relying on medical equipment. So basically, you know, the day to day becomes very, very complicated. Everything has to be sterile. There's so much equipment. There's so many tubes and little attachments. And I knew how much I had to do just to manage my medication regimen of just pills. I really was scared of the prospect of being that reliant on something like a center line. So I basically asked if we could just keep trying food. And I asked every single doctor that came in, who was doing rounds, regardless of, you know, if I'd seen them before or not, if there was any other thing they can think of or any food they could think of, like, what's the least allergenic food that comes to the top of mind, you know, even if they weren't specialized in allergy, just trying to pick everyone's brains. When we were talking about doing a central line, I was really scared about the complications and also how heavily I'd be relying on medical equipment. So basically, you know, the day to day becomes very, very complicated. Everything has to be sterile. There's so much equipment, there's so many tubes and little attachments. And I knew how much I had to do just to manage my medication regimen of just pills. I really was scared of the prospect of being that reliant on something like a central line. So I basically asked if we could just keep trying food. And I asked every single doctor that came in who was doing rounds, regardless of, you know, if I'd seen them before or not, if there was any other thing they can think of or any food they could think of, like, what's the least allergenic food that comes to the top of mind, you know, even if they weren't specialized in allergy, just trying to pick everyone's brains. But then this one doctor who typically worked with toddlers and babies was doing rounds, and she got briefed on the situation, and she said, okay, this is really weird, and let me know if you're open to it, but we have hypoallergenic toddler formula. And I was like, okay, I'm open to that. Like, I'm open to anything. And after a series of failed food trials, you know, after the course of a few weeks, I tried this hypoallergenic formula. And it's. It's basically. It looks like a protein powder. You mix it with water. I had like 1 ounce of it, just took a sip. And I remember there being, like, several doctors in the room, several nurses. I think the social worker was there. Like, everybody was there. And I was kind of just waiting for the reaction to hit because that's kind of what had been happening. And to my pleasant surprise, it went down totally fine. And it was a huge, huge relief for the whole medical team, for my family, for myself. And over the course of a few days, we were building up tolerance or, you know, building up the volume of that formula. So by the time I was discharged, I was on about half a can a day of powder. When she had that idea, I honestly was up for anything. So I was fine with the prospect of drinking baby formula. But I do remember a moment where, you know, the baby formula went well. I had trialed the formula, and it was no reaction, which was great. And I was increasing the amount that I was taking and I do remember sipping it, and it just tasted so bad. And it was a few days after it had been a success. And so I was just a little bit beyond the survival mode of, like, I don't care what this tastes like, as long as it has sustenance. Like, I'm so hungry and just being like, oh, my God, I'm 20 years old and drinking baby formula right now, and it tastes really bad. This sucks. And that's still. That's oatmeal and hypoallergenic formula. To this day, for the last five and a half years, that has been my nourishment. It has all the calories I need to survive. It has all the vitamins, minerals, nutrients. Basically, it's nutritionally complete. So that is what I live off of. And the oatmeal just happens to be kind of the solid substance form, which is good for, you know, bowel movements and stuff like that.

[Dr. Nance]

So you really do only just eat oatmeal and formula.

[Caroline]

It was kind of like my thing.

[Dr. Nance]

You like it now?

[Caroline]

I learned to love it. My friends always joke that, like, they should replace, like, the Quaker oats head with, like, my head 100%.

[Dr. Nance]

You've earned that.

[Host]

Yeah.

[Dr. Nance]

You probably eat more oats than any person else.

[Host]

You.

[Dr. Nance]

You deserve to be. Why are you not working with them?

[Caroline]

Yeah.

[Dr. Nance]

Yeah, let's.

[Host]

Dear Quaker, get this girl on a box. Sponsorship opportunity. Opportunity.

[Caroline]

My DMs are open.

[Dr. Nance]

Pop on into her DM.

[Caroline]

Yes. She's earned it.

[Host]

Yes. Were you able to get to the point where you were able to row again? How does it affect your energy levels to do beyond just existing?

[Caroline]

Yeah. So the end of my sophomore year was when I had that relapse reaction. I decided to take my junior year, or what would have been my junior year off. But, you know, the real story behind that is I did actually move into college for my junior year for a week, and then had a complete physical and mental breakdown because I was so exhausted. And I was like, I can't believe I can't do this, but I can't physically do this. And then moved all the way back. Makes sense. Yeah. And I realized that I needed to take some time for my body and all of that, so I rested a lot that year. It just happened that in that winter, a viral pandemic hit. And so it was okay timing on my part, I'd say, because everybody had to go home.

[Dr. Nance]

Everybody took a break. Everybody. The entire world was like, you know what? It's nap time.

[Caroline]

They're like, she's onto something.

[Dr. Nance]

Trendsetter. That year was VIP lounge trendsetting.

[Caroline]

That's right, I'm influencing. But Covid was really scary for, you know, people with pre existing conditions. So I was really the girl in the bubble because I was so scared to get Covid and to die of it. But then the following year, you know, I resumed my my courses and my classes because everything was online because of COVID So that was another silver lining. But I was really exhausted. I think for the first I'd say year or two years after that relapse from the Caribbean, I was exhausted. I was taking naps every day. I felt like I was in a fog. I don't really have a lot of memories. My memories all come from my pictures. So I can recount things from my pictures, but I think my brain fog was just off the charts. And I think that my body was just trying to do kind of the bare minimum. You know, I lost my period for a while and I was just bloated in like really weird places and my body was just off. So I'd say I really felt like I got back to myself for my senior year, which was the fall of 2021. And at that point I had slowly but surely built up some tolerance for physical activity. So I was walking, running a bit, doing kind of very low impact exercises. So technically, if you look at the roster, I was on the Rowan team for the entirety of my college experience, but I really was barely in the boat. But I will say, my senior year I was back to practicing probably 50 to 60% of what the rest of the team was doing, which was a huge improvement from the rest of my college experience. And then by the spring of my senior year, I was back in the boat. So that was a really emotional day when I got back in. And it was again one of those moments where I felt so much love around me and so many people supporting me and wanting to see me come full circle. So that was important for me for a few reasons. One being that I was on scholarship actually for rowing at this college. And I was really, really proud of that. I was really proud to be a top recruit. So I think that I needed that closure to see out why I really was at this school and also just to kind of feel like I was back a part of that community that I held so near and dear to my heart.

[Host]

So now you graduate college and you are have a similar path to Anna and myself in that you have taken your story online. Can you talk about what inspired you? Just start sharing Your. Your kind of disease journey.

[Caroline]

Yeah, absolutely. I really didn't talk much about my health or my health journey prior to this year. Publicly online, all of my close friends and family knew about everything, but I really wanted to be perceived as normal. I really had hope that I'd eventually heal and be normal. And I think that I wanted to.

[Dr. Nance]

So real. Yeah.

[Caroline]

I wanted to maintain an image just in case I was normal again. And I think if you look. If you look at my social media from my freshman year until spring of this past year, you would be like, oh, my God, she's totally normal, happy, healthy. Like, look at her moving and grooving. She gets out in the world, she's wearing her cute outfits. And I lived for that because there's just. So. I should honestly make a little TikTok about it, but there's so many pictures where it's like, the real story behind the picture would just. Absolutely. Just have people gobsmacked. Like, you know, I would have to lay down for two days after because I was standing up for 30 minutes taking pictures or, you know, something like that.

[Dr. Nance]

And there's like an embarrassment and a shame. Like, you can't hang, right? Like, I can't hang. So I can't. But I don't want anybody to know that because I'm afraid that maybe next time they won't invite me. Maybe next time it'll be too difficult. Yeah, maybe. Maybe if people knew how sick I really was, they wouldn't want to be around me. Because being around me takes work.

[Caroline]

Exactly. Yeah. So I was kind of operating under that mask for a while. A year after graduating college, I switched mast cell specialists because my old mast cell doctor was going full time into research, so all of her patients got moved over to her coworker. He basically took a look at my chart. You know, I had my initial intake with him. He looked at my chart, and he was like, oh, my God. You take 100 milligrams of Benadryl every night. And I was like, yep, on the dot, 11pm like, thinking I'm like, the best patient ever, you know, and then he's like, and you take Zyrtec three times a day. You take Allegra three times a day. You take omepadol twice a day. You take. Going through all these list of medications, he's like, are you tired? And I'm like, extremely. Every day, like, all I want to do is sleep. And he's like, you're on a medication that is. You're on double the dose. That People are allowed to be on if they, like, operate heavy machinery. And I'm like, okay, yep. And he was like, also, you're on like, double the amount of Montelukast that is also known as Singulair. That's allowed because there's like a black box label on it, like about like suicidal ideations and depression and stuff. And he was like, how, how are you mentally? And I'm like, I'm okay. Like, you know, I'm doing the thing and, you know, doing life. But he, long story short, he was like, we need to get you off of a lot of these meds, or at least we need to decrease your dosage. Dosage by a lot. And this is all to say that I basically took some time off of work. So I've been a healthcare recruiter for two years now, and I took some. A few months off of work to do a big medication taper. And that medication taper lasted from September of 2023 until March or April of 2024. So at that time, I was not working. I was. Had a lot of free time and the fall was really, really difficult. I was highly symptomatic. And he told me that, he said, you know, we're taking you off of these antihistamines, we're decreasing your dosages, like for the sake of your long term health. But in the short term, you're going to be really uncomfortable and your body's going to be adjusting. And that's exactly what happened. You know, I was more reactive in the fall and the winter and felt a lot more sick and it was upsetting. But by the springtime, I felt more like myself and I was nearing that medication taper. But I still had that free time on my hands. And I don't know, one day I just kind of had this moment of realization where I was like, I don't think that I'm ever not going to have mast cell. I was like, I actually think I'm going to. They're probably right. I'm probably going to have this forever. So I made a video. I just propped up my phone and I had made Tiktoks before, but it was all very aesthetic or funny or nothing ever, ever, ever showing my illness. And I just set up my phone and I was like, this is what I eat three times a day every day for the last five years. And immediately it caught fire. And people were so interested. And it was everybody from, you know, people with normal food allergies saying, like, oh, my God, I thought I had it bad. Being allergic to nuts or being celiac, but this doesn't even compare. Or just people who had no health conditions but they were really curious about why, why was I on this diet? Like why can I only eat two foods? And then also people who are in my exact same situation being like, I have MAST cell activation, I'm down to four foods, I'm really, really struggling right now. So a mixture of all those responses ignited this kind of passion in me to continue to share and to answer questions and recognize that by no means am I an expert or a doctor or anything like that, but I do have a lot of experience just with my experience. I have a lot of experience with my body and my life and I can at least share that. So since March I've been shamelessly kind of posting my day to day my lifestyle and it's improved my quality of life so much in so many ways that I could have never anticipated.

[Dr. Nance]

I would say that you are an expert in yourself, as you said, and I think you're. There is as much value in medical advice as there is in the experiential advice and having someone who's been able to get it, you know, manageable. I think manageable is the best word you can use because it's not like you said, it's never going to be perfect. So I think for people struggling it, even people not even with the same condition, just finding an answer and being able to live in that truth is a really powerful thing and being able to see how it changes someone is also really powerful.

[Caroline]

Thank you.

[Host]

What has been your most watched video?

[Caroline]

I think it was from this summer. Me and my not toxic gaslighting boyfriend.

[Dr. Nance]

A good boyfriend.

[Caroline]

Me and my boyfriend went out to dinner. I'd say drinks in heavy quotations because I can't really eat or drink anything from restaurants and I essentially showed people what I do when I hit the town. So I basically can't drink from communal glasses because maybe the dishwasher didn't do a great job and maybe somebody ate something that. It's like a really big trigger for me. I can't even drink from the plastic cups just in case somebody touched an allergen and then touched the rim of the cup. And yeah, I showed myself ordering a bottle of water and then being like can I just have it from the bottle? And them giving me like a really big bottle and being like you sure. And me being like mm. And then just drinking the water from the bottle and my boyfriend ordering a fun cocktail and us sharing this moment of you Know, being out, being on a date, having a beautiful sunset in front of us and having it be a really good experience. But, you know, it looks a little different for me. I can't order a fun cocktail, but it's a lot better than, you know, sitting at home and doing nothing.

[Dr. Nance]

You found a way to live. I think that's what's so inspiring about something like that is you found your own version of living. It's beautiful.

[Caroline]

Thank you. Yeah, I get a lot of comments that are like, I can never live like this, or, you know, I would, I'd rather end my life than, you know, whatever. But I think for one thing, you'd be surprised at what you're able to withstand and also you'd be surprised at what you can focus on that you can be really happy about and grateful for. And there's a lot of in that video. Although I'm not able to drink out of a glass like a normal person or drink a cocktail like a normal person, I was still at this beautiful restaurant with my amazing boyfriend and watching a beautiful sunset and I don't know, even just little things like I got dressed up and I really liked my outfit that day and being grateful that I had people to share it with online who care and who are curious.

[Host]

What are your hopes for the future?

[Caroline]

I am very, very hopeful and optimistic that I will eventually be able to expand my diet. I'm working with my doctor and other health professionals to food trial. Food trialing is really tough because it invites instability. You know, I know that food is one of my biggest triggers and to willingly rock the boat is scary. And it's, you know, you also question saying, okay, why am I doing this? Because if I could just do oats and formula forever and just live normally and feel good, then that would be fine. But I think the thing that keeps me persistent about food trialing is, is that I've seen other people with MAST cell activation slowly but surely incorporate foods back into their diet. Me being one of those people, you know, my freshman year of college, I was only on those three foods. And then over time I was able to expand. I also know how much food impacts our overall well being and our health. And I think I would be doing a disservice to my body if I gave up on that hope or that, that part of life. And I also just kind of, from a mental perspective, like, I was talking with my friend the other day and you know, she recently got engaged and we were joking around and she was like, what kind of like, are you gonna have an oatmeal and formula cake? And I was like, girl, like, I was like, I can't even joke about that because, like, I need to picture myself having a regular cake at my wedding. Otherwise, like, I don't know how much I have to live for, which sounds so dramatic, but it's true. Like, you need to have that version of yourself that. That ideal version of yourself that you're working towards. Otherwise, you know, what do you. You just be stagnant all the time. So food trialing is hard. There's a lot of things that go into it. It's, you know, I'm coordinating with my mental specialist, I'm coordinating with my more holistic doctor. And it's. It all has to be low histamine. It all has to be single ingredient, has to be organic and minimal pesticides. And there's so many pieces of the equation, all for it, sometimes all for it just to fail. And sometimes, objectively, the reaction is just too bad and you have to move on to a different food. But it's difficult because there's not a quantitative measurement. Your body doesn't say, hey, that was like an 8 out of 10, so maybe try a different food. It's all very objective, and there's a lot that could play into it. You know, if I. If I don't get enough sleep one day, I'm more reactive. If I'm stressed out about something, I'm more reactive. And some days I'm just randomly more reactive for no reason I can point to. So food trialing is difficult. And I. And I did. I put it off for a while. I did not food trial during my junior or senior year of college because I wanted to get back to classes. I wanted to get back to rowing. I wanted to get back on campus. I didn't food trial my first year out of college because I had a job that I loved and I still love, but I wanted to prioritize that and be, you know, successful. And then the year after that, I had to do my medication taper, which was increasing a lot of my symptoms. So that was in no way stable ground for me to food trial. And now I'm at this place where over the last few months, it's necessary for me to push that boundary. And it's definitely a long road. But I'm hopeful that I can get one more food back in my diet. And although it's proven difficult at times, I've tried and failed. Sweet potato and broccoli and chicken and a handful of other things before that it is not going to help if I believe that it'll never happen. So I'm really hopeful that I have some normalcy back with my diet and I think it is, you know, essential for my long term health. And yeah, I just, I think I can see myself getting there. It's just a matter of finding the right food, being in the right circumstances where my nervous system is settled and I don't have any triggers around me. But I also hope to keep on keeping on every day and finding things to be joyful about and be grateful for. And I think I've done a really good job at adapting to my situation and accepting that this is my, my new normal. I don't think I could have been posting on TikTok my freshman year, my sophomore year, my junior year, or even my senior year because I just hadn't reached that level of acceptance and I was still going through a period of mourning where I was mourning my potential life. I was convinced I was going to go abroad. I just had this whole vision that didn't come to fruition and now I can see, you know, although it's been a really, really rugged journey, it's led me to some beautiful places and beautiful people. For example, I just made a huge purchase. I just bought a van that I'm going to make my safe bubble on wheels. And, and that is, I'm so excited. Yeah, that's going to be an incredibly adventurous chapter of my life that I don't know if I would have done that if I didn't have all these kind of restrictions and challenges with my body, you know.

[Dr. Nance]

I can't wait to see you document that. I think that's going to be fascinating because like I'm there for the Renault, but then also like that added element of adapting it to fit you is really cool. That's really cool. I'm excited about that.

[Caroline]

Thank you. I just, I don't want to be in my childhood bedroom for the rest of my life. You know, as much as I, I love my childhood and I love my parents, they want to see me get out there too. You know, I think that that's one way I can certainly do that.

[Host]

I'm thinking like pimp, my ride comes. Oh yeah, Home makeover. But it's the van. Well, thank you so, so much for being so open and vulnerable and sharing your story and sharing the brave parts and the scary parts. I think there are so many young women, you know, I, I don't again know if it is a generational thing but I feel like there is just so much more diagnosis of autoimmune disorders and conditions that are related, like MCAs and pots and ehlers danlos that are unfortunately becoming more and more common. And people need people to look up to. And so I think you are going to be really, you know, a shining example for them.

[Caroline]

Thank you.

[Dr. Nance]

Great.

[Caroline]

Thank you so much, both of you, like, you both, too, are, you know, providing so much valuable input in the medical world. And I'm just, like, really honored to have the opportunity to speak with, with you both and share my story. And you're both very good listeners, and you ask incredible questions. So I'm really excited to see where this, where this podcast go.