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.
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