GUEST POST: The downsides of MCAS remission

Don’t get me wrong. MCAS reactions can be terrifying. I don’t wish them on anybody. I hate when anyone suffers.

For years, I took care of my mom as she struggled with life-threatening MCAS reactions. I could literally hear her heartbeat speed up as her body flooded with mast cell chemicals. I told her to lay down and promised I wouldn’t leave her side. I even followed her to the bathroom when her intestines swelled and cramped, forcing her to throw up.

Sometimes, the inflammation caused her so much pain she cried. I wiped away her tears and tried to distract her. In the moment, she was often too confused to appreciate my interventions, but she always thanked me later.

When we went out in public, I sneezed violently at anyone wearing perfume. I wish I could have pulled them aside and explained they are polluting the air we breathe. To be fair, I too have been guilty of rolling my body in a signature scent, but masking your skin with synthetic chemicals is unnatural at best. My mom always says that’s what a bath is for.

—

Then one day, my mom’s scary reactions stopped.

I didn’t question why. All that mattered to me was that she felt better. For the first time in years, she invited people over for cake to celebrate. I literally jumped for joy as she filled the room with laughter.

Our time together changed dramatically. Before MCAS remission, I had to encourage her to take small walks around the neighborhood. Now, she invited me on walks every day–sometimes twice a day! I was excited at first, but then she started to outpace me. A couple times, she made us walk so far, that I lay in the grass with exhaustion.

Of course, many people think the hardest part was when she told me she didn’t need me anymore.

Yes, she literally said that. Out loud. Then closed the door in my face.

And yes, I cried. It was a surprise retirement nobody prepared me for.

But over time, I learned to enjoy my new routine. I had more time to sleep and hang out with my brother. I even dabbled in interior decorating and DIY crafts, while my mom engaged in what can only be described as the human version of zoomies.

However, there is one part of her remission I will never embrace.

Before remission, her overactive mast cells inflamed and irritated her intestines so severely that she couldn’t properly digest FODMAPs or salicylates. Meanwhile, spices set off reactions before they ever got to her stomach. Chicken, beef, and flash frozen fish were fine, but no garlic, onion, or even pepper.

She didn’t have much energy or physical strength to cook either, so she’d regularly buy a fresh rotisserie chicken, portion it out, and freeze it with plain white rice. Same meal, seven days a week, without fail. She would get sick of it, but I never did. I happily ate all her leftovers when she was too disgusted.

When my mom went into remission, she swore she’d never buy a rotisserie chicken again.

Instead, she hauled bags upon bags of groceries filled with colorful produce and fragrant herbs into the kitchen, followed by clanking pots, sizzling oil, and a cacophony of spices that tingled my nose. I salivated with the anticipation of sharing new meals full of flavor.

She didn’t even let me taste them.

“You can’t have this; it’ll make you sick,” she said. “I’m sorry, but you’re a dog.”

But I live in the present! I cried. I don’t worry about things like stomach aches and diarrhea. Bring on the trial and error!

She ignored me.

For years, I did everything to keep her safe and happy, and now that she is finally in remission, I am the one with the restrictions.

– Sancho, retired service dog and very good boy

White and red colored toy poodle sitting with mouth open like he is smiling

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A wrinkle in my remission

Last summer, I got my fillers removed.

Not the gel type, of course. I would never threaten my mast cells like that.

After nine years of prednisone, I successfully tapered off and watch my face deflate. Corticosteroids don’t just cause appearance changes with dreadful names like “moon face” and “buffalo hump;” the redistribution of fat, particularly around joints, can be painful. Although my skin lost its prednisone glow, I was thrilled I could slip my arms into clothes and bend my knees without discomfort.

One of the very few perks of mast cell activation syndrome (MCAS) can be looking younger. Overactive mast cells can plump tissue, boost circulation, and remodel connective tissue, all while training humans to evade sunshine like a vampire. I wrecked my flawless skin no more than two weeks into MCAS remission when I flew to Florida before remembering beach vacations require sunscreen.

For five years, my skin care routine included Benadryl cream and cromolyn squirted into lotion to combat allergic shiners and facial flushing. Now I am using Tretinoin, which literally increases the number of mast cells in the skin, to fight wrinkles and boost collagen. Yes, my mast cells are so stable that I have a prescription to recruit more.

Soon after stopping prednisone, I developed a prominent wrinkle anyway. Rather than feel disappointed, I was perplexed. The wrinkle is on the bridge of nose, a horizontal line between my eyes. Who gets their first wrinkle on their nose?

When my mom informed me it’s called a “bunny line” I dismissed it as some kind of maternal euphemism. So, I Googled it and learned not only is that the terminology, but it can be caused by smelling something repulsive.

DID MCAS GIVE ME A WRINKLE? All this time I’d been holding onto the fact at least my mutated mast cells made me younger, when really, they were engraving my face.

Every time I entered a bathroom with an air freshener.

Every time a coworker entered a meeting wearing perfume (despite being told not to).

Every time laundry fumes wafted over the sidewalk.

Every time I scoured a new room like a blood hound hunting VOCs.

Every scented trash bag and Amazon package.

Every freshly sanitized room.

Maybe wrinkles should merely indicate where the smiles have been, but in my case, they indicate every MCAS ambush I fought to survive. I certainly have earned this wrinkle and I will wear it with pride–mostly because Botox seems like a terrible way to protect my remission.

Or maybe, I’m just overly expressive. And cute as a bunny?

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I can eat anything… kinda

I have become an enthusiastic eater. I would say a foodie, but I still am learning basic knowledge about foods and flavor. Yes, I did try to eat the whole edamame pod.

When my MCAS symptoms went into remission in 2021, I could suddenly eat and exercise without worrying about a life-threatening MCAS reaction. Embracing my new freedom, I decided to simultaneously taper off my steroids, play all the sports, and become a vegetarian. Well, technically, I became a pescatarian, but when you live in Minnesota–same thing.

Why would someone who just experienced severe food restrictions for 5 years CHOOSE to limit their foods?!?

First of all, I never wanted to see chicken again. From 2016-2021, plain chicken was one of about 15 foods that my mast cells could usually tolerate if prepared correctly. No pepper, no oil, and definitely no garlic. Fresh or frozen, but never refrigerated. My work lunch, hospital meal, and birthday dinner was plain chicken with a side of plain white rice.

(Note: I don’t call it a “safe food,” because any food can trigger a MCAS reaction if your digestive system isn’t working. Chicken was easier to digest, but there were plenty of times I just had to skip meals because fragrance, heat, or other stress rendered my digestive tract useless.)

Second, I was scared of eating meat. If you recall, I was bitten by a lone star tick in April 2021, an insect notorious for carrying alpha-gal, which can cause severe allergic reactions to red meat and other mammal products (e.g. beef, pork, lamb). After coming so far, I refused to live in fear of anaphylaxis. So I decided to stop eating meat until I could get tested. (It takes awhile for the body to produce IgE antibodies.)

At the same time, I knew I needed protein to play sports. Although I could finally digest soy, I never dreamed of MCAS remission for the sake of eating tofu. Gross. I did my best to find alternative protein sources, but was so relieved when I tested negative for Alpha Gal in October 2021. I slowly resumed eating meat, and felt better than ever. I assumed my protein deficiency days were behind me.

Meanwhile, my attempt to taper steroids on my own did not go well. An endocrinologist informed me that my decision to become a competitive athlete at the same time was a bad, if not impossible, idea. When I increased my strength training and experienced symptoms more severe than my endocrinologist could explain, she blamed my mast cells.

“Maybe you don’t know you’re having a mast cell reaction,” she said.

“Maybe you don’t know how to help me,” I thought, as I did my best not to rage burn all my cortisol on her ignorance.

No one would have blamed me for stopped that doctor, but I did some research instead and asked, “Could I get a prescription for a continuous glucose monitor? My blood sugar seems to be tanking in conjunction with my cortisol and a Freestyle Libre 3 could help me stay safer. And then I would have more information for the upcoming appointment.”

My doctor had never informed me that cortisol regulates blood sugar or suggested I test my blood sugar when feeling low cortisol symptoms, but she did prescribe the continuous glucose monitor. At 3 AM on the first night, the alarm screeched as my blood sugar plummeted. It continued to document my lows in the middle of the night and after my workouts. Suddenly, my endocrinologist was not concerned about my mast cells.

Of course, I invested in juice boxes, but I also became more curious about protein, which can help stabilize blood sugar. My life changed when I asked my fellow competitive skaters how much protein they eat. In disbelief, I Google my recommended amount. My jaw dropped and then I shoveled yogurt into my mouth.

Over the years, I have learned the intricacies of mast cell disease including dozens of mast cell mediators and the NDCs of particular medications, but I never learned how much protein my individual body needs. Unlike these skaters, I had limited experience with sports as a kid. I was too busy being sidelined by illness or injury to learn how to build muscle.

When my MCAS symptoms became more severe, nutrition took a permanent back seat. I was simply trying to survive. Eating was often dangerous. Right before remission, my stomach began bleeding, a life-threatening complication. However, I can’t help but wonder how understanding my protein needs then might have helped me.

With this new information, I downloaded a protein tracker on my phone, started hitting my goal, and began feeling better. I still struggled with low cortisol, but it became more manageable. I joined a gym with a body scanner to track my muscle growth and ensure I was correctly fueling my body. (This also helped me pace my steroid tapers.) To this day, it angers me that a doctor with no training in MCAS blamed my mast cells before asking about my nutrition.

A few weeks ago, I celebrated four years of MCAS remission. I no longer take medication for MCAS and I can eat anything… but I choose to prioritize protein. I’ve even rekindled my love for chicken, as long as it’s smothered in sauce or spices. Protein has allowed me to continue to heal and thrive as an athlete. High FODMAPs, salicylates, and histamine foods are all good now–low protein not so much.

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