IMAGINE only eating two foods for breakfast, lunch and dinner every single day - that is the case for 25-year-old Caroline, who survives on a diet of just oats and baby formula. At the age of two, she had her first anaphylactic reaction to crackers and was rushed to hospital - but this was just the beginning of a long line of severe allergic reactions that would eventually result in a diagnosis of mast cell activation syndrome (MCAS). As Caroline told truly: "It is basically an allergic disease in which the patient can have serious allergic reactions to a whole host of things. For me, my biggest triggers are food, pets and pollen." Caroline's most recent anaphylaxis at the age of 19 reduced her list of safe foods to the oats and baby formula combination she now lives on day-in, day-out. She admits that she used to get "so bored of just eating these two foods" but when she took to TikTok to post light-hearted videos explaining her condition, the response surprised her. Suddenly, she was receiving suggestions of recipes she should try - and this enabled her to expand her repertoire and fall back in love with eating again. However, she has also been questioned and mocked online, with people accusing her of faking her condition - adding to the long list of hurdles Caroline already faces in her everyday life. Something as simple as leaving the house or socialising with friends requires intricate planning and precautions to be in place - but particularly with the support of her mom, Julie (who she calls her "emotional support human") she has been able to face the restrictions placed on her head on. As Julie told truly: "I'm so proud of Caroline, the way that she has handled the last several years, her determination to be happy and stay happy." And with that positivity, Caroline is determined to continue raising awareness for MCAS, but also to encourage people "to be grateful for what they do have... Finding the silver linings, finding the good stuff in life!"
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00:00I live off of oats and baby formula to survive my allergies.
00:05I have mast cell activation syndrome and food is such a big trigger for me.
00:09I've gone into anaphylaxis multiple times.
00:13When my throat starts closing up and I start struggling to breathe,
00:17it's honestly the most terrifying feeling ever.
00:21Sometimes people will just comment like,
00:23if you can only eat two foods, why aren't you thin then?
00:26You're not allergic to food, you're just allergic to a lack of attention.
00:32Today, I'm surprising my friends with my favorite recipe.
00:35It's oat waffles and baby formula ice cream.
00:41All right, so I got my medications for the day,
00:44which is a pretty intense cocktail.
00:49I'm Caroline. I live off of hypoallergenic formula and oats
00:53in order to avoid allergic reactions.
00:56These are mast cell stabilizers.
00:58MCAS is mast cell activation syndrome.
01:01It is basically an allergic disease in which the patient can have
01:05serious allergic reactions to a whole host of things.
01:09For me, my biggest triggers are food, pets, and pollen.
01:14This one keeps my airways open, all of that good stuff.
01:18These just go down the hatch.
01:20I've had severe food allergies since the ripe age of two years old.
01:25At the time, I wasn't allergic to anything.
01:27All of a sudden, I went into anaphylaxis.
01:29My parents rushed me to the hospital,
01:31and then I didn't have any more allergic reactions until I was 18 years old.
01:35I ate ice cream that was cross-contaminated with nuts,
01:39and all of a sudden, I went into anaphylaxis.
01:41Instead of my body just recovering, I kept on going into anaphylaxis.
01:45I was having allergic reactions to all these safe foods
01:47that I was eating for years and years and years,
01:49and my list of safe foods kept on getting smaller and smaller and smaller
01:53until I was literally just down to oats.
01:55One of the doctors came up with the idea of trying hypoallergenic baby formula.
02:00That's been about five years now.
02:03Hi, everybody. We're making scrambled oats.
02:06It's kind of amazing how much you can make with just two foods.
02:09I used to get so bored of just eating these two foods.
02:12I would literally just heat the oats up with boiled water,
02:15and then I'd add a bit of formula.
02:17But ever since posting about it on TikTok,
02:19you guys have come up with so many good recipes.
02:22This is so good.
02:23I first started posting on social media about my condition a couple months ago.
02:28It seems like I've ended up raising awareness for mast cell activation syndrome,
02:31which is really cool because I didn't even know what it was
02:34when I was first diagnosed with it.
02:36Morning, honey.
02:37Hi, mommy.
02:38My mom is the most supportive and loving person I've ever known.
02:43That looks pretty good.
02:44Yeah, I think so too.
02:46These kind of smell like eggs.
02:48The very scariest moment that we had was when you were hospitalized
02:53and you then went into anaphylaxis right in front of all the doctors right there.
02:59And she was in ICU for several days.
03:01That was literally terrifying.
03:04But it's improved a ton, obviously.
03:10It's nice that she can now make things that are similar to ours.
03:14So many things in life are based around meals and dinners
03:18with family and holidays and things like that.
03:20Everybody is really willing to make it work.
03:26I have different dinnerware than my family
03:28because this helps keep my food separate
03:31and there's no risk for cross-contamination.
03:33It's cuter than yours, so.
03:35I agree.
03:37I've seen multiple comments on my TikTok
03:39of people accusing me of faking my illness.
03:43Somebody said,
03:53The hypoallergenic formula has everything I need to survive.
03:55In order to hit my daily intake amounts, calories, nutrients, vitamins,
04:01I try to eat five cans a week.
04:03Big girl's gotta eat.
04:06There are a lot of holistic practices
04:09that have helped people with mast cell activation find relief.
04:12It helps tune in to my body
04:15and helps me understand that everything that I feel
04:18doesn't mean it's a symptom.
04:24Anytime I leave the house, I take several precautions
04:27to make sure I keep my symptoms at bay
04:29and I don't flare up my immune issues.
04:32Got my emergency meds, my EpiPens.
04:37I never, ever, ever go into somebody's house or apartment or car
04:42if they have a pet dog or cat
04:44or if they eat my severe allergens
04:47because just breathing in those allergens
04:49can ruin the next several weeks for me.
04:52You could argue that it would be a better, safer move for me
04:56to literally just never leave the house,
04:58but I don't think that is conducive to a high quality of life,
05:02so I do choose to go outside every day
05:05because I feel like it helps desensitize my mast cells
05:09to pollen and other allergens.
05:11I feel really safe when you're by my side.
05:14Like, I would consider you my emotional support human.
05:18Honored.
05:20I'm so proud of Caroline,
05:22the way that she's handled all of the last several years,
05:25her determination to be happy and stay happy.
05:29We've been walking for a bit. How are you feeling?
05:32I'm pretty tired. I'm pretty brain fogged.
05:34Take a little break?
05:35Yeah, that'd be good.
05:37Dysautonomia is an autonomic immune system issue.
05:41Basically what that means for me is I have a ton of nerve damage.
05:45If I stand up or walk for more than about 20 minutes,
05:49I'll start to experience a lot of dizziness, lightheadedness.
05:53There's no way we can really prove
05:55that the mast cell activation caused the dysautonomia,
05:58but I got sick with mast cell activation syndrome
06:01in September of 2017,
06:03and then I got diagnosed with dysautonomia in August of 2018.
06:07When I was really sick with dysautonomia,
06:09I was actually in a wheelchair for a while.
06:11So it's a miracle that I'm able to go on a walk down the street with my mom.
06:19Hello!
06:20Hi!
06:21Woo!
06:24I'm happy you guys are here.
06:26Socializing looks very different for me.
06:28I try to get creative
06:30and think of other things I can do that don't revolve around food.
06:33So that might be going to an art museum,
06:36or going on a walk,
06:38or having my friends over for a paint night.
06:41So when we first met Caroline,
06:43it was before I would say her most recent really major reaction.
06:50It was our sophomore year, middle of the year in college,
06:53and at that time we were able to all sit together at the dining hall.
06:59My friends are incredibly supportive,
07:01and I really thank my lucky stars every day for them
07:05because every single friend that I've had before I got sick,
07:08they're still my friends now.
07:11Did you guys have lunch yet?
07:13No, not yet.
07:14Okay, amazing, because I have an idea.
07:16I was thinking we could have lunch together.
07:19Okay!
07:20Close your eyes.
07:25Chefing up.
07:27All right.
07:31And open.
07:33Whoa!
07:35And formula ice cream.
07:37Okay.
07:38Dig in.
07:43It's actually really pretty good.
07:47Yay!
07:49You're not just saying that to be nice.
07:50No, like I'm actually surprised.
07:52When people see my story,
07:54I hope that they are inspired to a degree
07:59to be grateful for what they do have
08:02and be grateful for all the things that their body does correctly.
08:06I've had some tough moments and low points with this disease,
08:10but overall, I'm so proud of myself
08:13for the way that I've come out on top of it,
08:15and I hope that it maybe inspires others to stay strong
08:20and keep pushing through,
08:22finding the silver linings,
08:23finding the good stuff in life.