An intro guide to Mast Cell Activation Syndrome and how it has fundamentally changed my life. Living under the constant threat of anaphylaxis is hard - but there are ways to make it easier.
I'm so sorry about this, BBT. We found out when I as a toddler that I am deathly allergic to horses (we had 2 and my grandfather was going to get me a pony and carriage...thanks for the crap genes, dad). In my late 20s, I developed an anaphylactic reaction to aspirin and its brethren. I can only take Tylenol. I haven't been stung by a bee in ages, but I wonder, Will I have my Epipen with me the day I do? Because, with me, who knows? Wasn't allergic before. Will I be now? My terrible "specialist" pediatrician said I would "outgrow the allergies". Sure, Conrad. All the old ones have stayed and new ones to pop up. I hope the trigger(s) can be found. It took me ages to understand it was aspirin. And then it was a doctor who gave me an aspirin product (after I told her about my allergy), and that caused the anaphylactic reaction. And this was before I had an Epipen, because horses are kind of easy to avoid. LOL. Hope you're feeling better. xo
Is there any chance you might have MCAS? Do you have EDS? I only ask because many of us can’t tolerate aspirin or NSAIDs - Tylenol only. And we don’t grow out of our allergies.
I always carry epi and liquid Benadryl - learned that lesson the hard way when I got stung by a wasp out on a walk alone and collapsed on the street. Do not recommend! lol
I don’t have EDS and suppose I could have MCAS, but things seem to be under control…I think? I got rid of my annual six-week sinus infection by cutting out grains (and nuts and eggs and legumes…had already cut out red meat and dairy). I’m allergic to opiates in that I projectile vomit (which a doctor told me is a ‘reaction’ not an allergy…I told her I’m allergic to throwing up), except for Darvocet, which, of course, they took off the market! But I was born with allergies, some of which I’ve outgrown…others, like animals, have stuck around. When I went to get the shots, I was allergic to so much, I’d have to get a shot in each arm, each week. Until the injection site would bleed, and then I quit. Enough was enough. When I had the anaphylactic reaction to the aspirin product, my allergist (the good one) said, “You can either pop a Benadryl or call 911.” LOL. I loved that man. My Bens have expired. I’ll have to get more. And sorry about the wasp experience! Scary to the effing max! xo
Worth keeping it in mind just in case - so much of what you’re describing aligns with my experience (and I cut out all the same foods as you too). Opiate allergy is also very common in MCAS.
I was so fortunate with the wasp that a kind person drove by and stopped for me! I was always taught never get in a car with a stranger - but I made an exception that day 😂😂
LOL. I’ve been there, too. On the fast lane side of the freeway early on a weekend morning heading to work, my car overheated. I had no choice but to pull over to the left because no one would let me over on the right. A very large, kind gentleman in a Corvette stopped. No one else did (and this was before cell phones). He offered to take me to work. Because of him, I was on time! There are good people in the world. xo
I adore that! Honestly I’ve been helped by strangers so many times - and most of the times I’ve been hurt has been people I’ve known. Kindness of strangers is very real.
I used to live in a rather scary neighbourhood with a needle exchange site and a homeless shelter - one night when I came home there was a man asking for money outside my apartment. I didn’t have any on me (I never carried cash when walking alone) and genuinely apologized for not having anything.
He offered to help me take my groceries upstairs! It retrospect it probably wasn’t the safest choice to allow a stranger to come up to my door - but he was so kind and the bags were heavy. I actually ended up making him a hot chocolate to go :)
BBT, just want to say how much I appreciate your writing. Your essays are clear, lucid, direct, and powerful. Every sentence advances the reader’s understanding. And your tone is a miracle of balance. You are a terrific resource, and I believe that you undoubtedly are helping many more people than you will ever know. Thank you!
This is so incredibly kind! You made my whole day with this comment.
Writing is hard work and takes the majority of my spoons on any given day - and comments like yours make all the effort and fatigue worth it. Thank YOU for reading and taking the time to comment 💜
Hi from your fellow MCAS ginger friend. Mine is not nearly as severe as yours. That truly sounds like a daily nightmare. The only food I seem to have newfound trouble with is garlic; the smell and taste makes me nauseated. Mostly I have skin reactions (eczema) and have had to cut out any products with fragrance because of how my skin reacts but also how much the smells affect my breathing and make me lightheaded.
Interestingly, I had a severe reaction to cromolyn sodium - ended up in the ER puking my brains out. I’m now on montekukast, hydroxyzine, and famotidine (Pepcid).
Not sure if you’re subscribed to Jodi Attenberg here on Substack, but she has a great MCAS resource page on her website: https://jodiettenberg.com/mast-cells/
(forgive me if you’re the one who told ME about HER - my brain isn’t working properly lately).
I think I was the one who told you about her - she’s a good friend and designed my logo (and honestly is the reason I ended up on substack!). Her resource will be linked in part two - it’s essential reading!
As for Cromolyn Sodium - did you start on a full dose? Many doctors don’t advise patients to go low and slow and it can make you have a severe reaction. I always think of it as the mast cells fighting back because they know they’re in trouble.
It took me months to work up to a therapeutic dose - but once I got there it made a big difference.
You’re right - my ID doc didn’t tell me to start off slowly. But I’m afraid it’s a bit like the “whiskey effect” - have one epically bad night with a substance and you’re turned off from it forever. I don’t think I could give it another shot. It’s okay for now; I think my MCAS is mostly under control. Still awaiting the results of my HAT test, too. I’ll keep you posted!
I completely understand that - and I hate that they didn’t tell you to go slow. It’s a sure fire way to fail the med. Grrr. Glad things are relatively well controlled though!
Just checked out the ER guidance doc - WOW. What a great resource. And just had me connecting the dots - I’ve long had an allergic reaction to morphine, and last year I reacted badly twice to corticosteroids. I’m also not tolerating alcohol at all these days. This is really illuminating - thank you for sharing it. I’ll boost your post in my next one.
You’re so welcome! I keep that guide on me at all times.
I also wasn’t this severe when I was first diagnosed (I had the condition long before COVID) but sadly things have progressed. Unsure if it’s a progressive condition or if perimenopause and other health issues are driving it - but it’s a lot more difficult to manage now versus in my thirties.
I know the feeling! I used to have the best diet - I was big into wellness culture and made everything from scratch, all whole foods, even made my own nut milk and cheese. MCAS ruined all of that.
I’m going to tackle diet more in part 2 because it’s so hard to ensure all your nutritional needs are met when you’re a) taking a bunch of meds and b) reacting to every dang thing you put in your mouth!
Thank you, really informative, didn't know about the different presentations of anaphylaxis. Interesting as my daughter and I are both having more reactions to things since COVID, mostly runny eyes and nose and sometimes throat, so this is worth knowing! So sorry you're having to deal with this. I totally empathise with a smaller life, mine is more fatigue and pain related. X
I’m glad it was helpful! I honestly want to shout the anaphylaxis info from the rooftops as so many people don’t know - and it’s dangerous to be in untreated anaphylaxis.
I hope your allergies don’t progress to MCAS - but at least now that you’re aware you will have an idea what to watch out for. Part 2 will be a lot more in depth… it’s taking a long time to finish though.
I have severe ME and after a year of tests for my gastrointestinal problems proving nothing, my ME specialist Dr Weir said it’s MCAS.
Problems began following a very severe UTI. I had 3 weeks of antibiotics. I lost weight so my husband and carer both wanted to feed me up with lots of high histamine food which I now recognize.
I’ve experienced pain & bloating for most of my adult life. First it was IBS then it was found I had coeliac disease so thought once gluten was removed all symptoms disappeared, but alas, no!
I’ve been eating with a heat pad & hot water bottle on my stomach for 15 months now but on 13th September the pain was so great I could no longer cope.
I even put a lot of weight on because I ate high calorific food and being bed bound, it was easy to gain weight. The heat numbed my stomach so I didn’t feel the pain. Unfortunately, this weight gain has gone against me and the heat no longer works.
I was admitted to hospital as a preventative measure to prevent malnutrition which so many people with severe ME have including dying of it. Read about Maeve Boothby O’Neil.
My GP suggested a course of TPN to give me gut rest which I so desperately need. That suggestion went against me too.
In hospital I wasn’t allowed my sodium cromoglicate, which I have to purchase from a pharmacy in Germany, because it’s unlicensed and my county of Dorset 🇬🇧 doesn’t prescribe it or Ketotifen.
I saw seven gastroenterologists none whom would contact my ME specialist because that would mean they’d have to admit they knew nothing about MCAS.
I did the dietitians suggested supplement diet of Fresubin over a long weekend which still caused me the same symptoms.
I was then visited by the nutrition support team led by a gastro consultant. She said I had functional gastric pain syndrome (code for its in your head). She put me on a low histamine & low Fodmap diet which I stuck to despite the pain, hives, bloating, itching, nausea plus my airway being compromised one evening.
No doctor would discuss MCAS.
The following week the nutrition support team visited me again led by gastro #7 and he said I should be discharged as wasting an NHs bed! Good start! Then he diagnosed me with severe constipation & prescribed a new medication which I was grateful for as I’d been requesting something to speed up my gut since admission. Again, he would not entertain MCAS. When I asked how can severe constipation cause allergic reactions he simply shrugged his shoulders and said I don’t know! Can’t fix everyone 100% he said. 🤷♀️
So I was discharged the next day and they emailed Dr Weir 5 days after discharge and not asking for advice!
Now I can’t eat anything without a severe reaction. The level of pain has reached a new high of which I can no longer cope. No meds or heat help. The only way to stop the pain is not to eat.
I’ve started a new feed but that has the same effect. Dr Weir wants me to have a NJ tube but I now suspect the MCAS is past the jejunum and so TPN via a PICC line is the best course of action in my opinion.
My private dietitian is referring me to a private neurogastroenterologist who knows MCAS well. I’m hoping he can tube me.
I’m exhausted with it all but mostly the pain.
I don’t know if other things than food affect me although stress definitely affects my gut.
My plan is to try and get MCAS on the NICE guidelines so it is taken seriously.
To end, if I’d been vomiting constantly or I’d lost 3 stone I may have been taken seriously. They can’t see my pain or my nausea and they ignored my photos of my distended abdomen and hives.
My stomach needs a very long rest rest because this ‘flare’ has been going on for 15 months and shows no sign of stopping.
I’m producing a Vlog on X & 🦋 so my journey is recorded incase I end up dying of malnutrition.
I have not been formally diagnosed with MCAS, because the treatment is the same for Chronic Idiopathic Urticaria, which I was formally diagnosed with, but my allergist and I are fairly confident that I have it. I am on Xolair, which thank god keeps it at bay most of the time, but it is still an UNHOLY pain in the ass. Thank you for raising awareness!
I’m so glad you were able to get on Xolair (and that it’s helping!).
The only thing I would add is that while the treatments may be the same - the management could be different in cases such as surgery. Because the mast cells release more than just histamine - I’ve found surgeons and anesthesiologists like to be aware of it because it can lead to more bleeding, issues with BP and heart rate and of course - difficult intubations.
That might be true of chronic idiopathic Utecaria too - I’m not sure. But perhaps just something to keep in mind? I was very difficult to keep under and bled way too much in all my surgeries.
This makes me wonder…. I am allergic to multiple anaesthetics and antibiotics, allergic or intolerant to loads of foods, mosquito and other bug bites leave with huge inflammation, I can’t use any other detergent than Fairy on my clothes, if a hotel uses wrong one I’m itching to death all night, can’t use anything either SLS in it (shampoos etc), allergic to chlorhexidine too….i wonder what will try and kill me next 🤷🏼♀️ but no doctor ever suggest MCAS ?
Sounds like it could be possible! MCAS is also known to get worse at night because histamine dumps in the evening.
Many doctors aren’t familiar with it and/or think it’s so rare they won’t consider it.
It wasn’t suggested to me for YEARS until a doctor diagnosed my POTS and EDS. MCAS is commonly seen with those disorders so she sent me to an MCAS specialist and he put the pieces together.
Thanks for the well-written and informative article. I’m still trying to figure out all the systems that were damaged by my COVID vaccine (and following ones). And how to cope with multiple issues when my PCP sends me to specialists for each discrete issue. All I do is go to doctors. And try to avoid getting COVID or any other diseases floating around. I finally have a name for my condition—PVS, for Post Vaccine Syndrome. I got accepted into the Yale LISTEN program as an observer, so I can now attend the infrequent zoom meetings where the doctors talk about their research. I found a support group for other PVS people (the study is for Long Covid, but they’ve recognized the parallels, so the support group is a godsend). I understand your situation completely, and have many of the same limitations (although I don’t have the extreme food experience that you do). Just knowing I’m not the only one with these types of issues is somehow comforting. Thanks so much for sharing your story.
This is a really solid intro, and packed with resources. I clicked through to the Emergency guide. I've a few NIH articles that I saved to understand Cytokine storms from Covid.
I know that this is going to be a good series and brilliant resource for others. Raising awareness of MCAS is essential.
The emergency guide is invaluable - it’s helped me so many times (especially if at an ER where they aren’t familiar with me). The cytokine storm is definitely something to watch out for - and Covid is known to cause severe mast cell degranulation
Interestingly there was a study that came out recently showing that antihistamines may have some protective measures against COVID. Given the huge doses many of us take … perhaps we are lower risk than we realize!
A lot talking about food here, but you also touched on scents and that's something I'd love some help with. I'm trying to stick to natural and scent-free products because I have family members with high sensitivities, but many are ineffective, or some smell even worse. Are there certain types of scents you know of that are safer than others?
Unfortunately it varies wildly by individual. For me truly scent free tends to be best - and it’s important to learn to read labels because many “scent free” products have parfum or fragrance (nonsensical - but that’s been my experience).
Sometimes it’s best to DIY a product with handy ingredients you have around the house - and that way you can be sure it’s truly scent free.
I may consider doing a fourth post which will look at various do it yourself options for skin and body care. Many aren’t very hard and once you learn how to make a safe lotion you can make creams to assist with reactions by adding things like Benadryl and/or Cromolyn!
Thanks for this great introduction to MCAS! I rarely come across others who have this more atypical presentation. One of the earliest descriptions I saw of it was that we have “leaky” mast cells. We tend to have constant low level symptoms and when we trigger reactions they tend to take hours to days to show up. Trouble tends to sneak up on us, versus happening in dramatic stereotypical anaphylactic shock events. It doesn’t mean that we aren’t really sick. It just means that the journey to our reaction looks different.
My latest stupid trigger is the “rumble strips” on the Interstate Highways.There is LOTS of road construction and the lanes are being shifted so that traffic is driving directly on the “rumble strips”. When other cars drive on them and I can hear the sound I start having migraine, vision issues and pain in my ears and jaw. If the car I am in has to drive on them, I have excruciating bone pain and if we have to stay on the rumble strips long enough, I lose the ability to respond/speak/voluntarily move. It definitely makes leaving the house awkward.
Yes! That’s a great description. We absolutely have a different journey to reaction. My facial flushing has become constant these last two years - same with hives on my shoulders. So I know I’m low level reactive all the time. My bucket is so full that it doesn’t take much to tip me over into anaphylaxis (and don’t even get me started on rebound reactions and how horrible they are).
A rumble strip buddy! They trigger me as well. I’m so sorry you’re dealing with that but I’m also relieved I’m not the only one. Car rides in general trigger me but I can minimize it by running an air purifier in the car (my small Levoit can actually run off the cigarette lighter) and wearing an eye mask and headphones. But nothing helps with vibrations.
Thank you for covering this important topic. My MCAS is not as severe as yours, but it's been a wicked challenge. It was a great day when I discovered an H2 blocker combined with antihistamine could resolve some of the worst reactions.
I am not a fan of mast cells...
Looking forward to better understanding of how to prevent all reactions.
Completely agree with Holly - they’re a curse a lot of the time. I hate suppressing my stomach acid as I swear it’s made meeting my nutrition needs more difficult - but the mast cells were also destroying my stomach and esophagus and natural approaches had failed. It’s such a frustrating tight rope act.
My next article will include more dietary advice as well as various lifestyle changes that have made a big difference - for the first few years I focused on diet alone and ignored other aspects which was a mistake. It’s really a whole body disease that requires a big picture approach.
Agree about H2 blockers. I am fortunate to be able to go off of them most of the time these days. Been at this since the 90s. My last round with cimetidine led to swollen tender breasts (it always does that) but this time it led to painful hard lymph nodes to the point I ended up getting an ultrasound to see what was happening. It was only after that I found out that is a rare side effect. Stopped the med.. lymph glands calmed down.
Oh that’s interesting - I had no idea it could do that to lymph nodes. I had to have mine scanned as well and they’re still super swollen! Thanks for pointing that out.
Thank you! I don’t know if I can get off them right now (the reflux and GI issues are some of the worst I’ve had and I’m losing so much weight) but definitely going to talk it over with my doc. We’ve all been stumped about my lymph nodes and maybe this is the answer!
Wishing you luck. If you find an alternative that works as well, I would love to know. Cimetidine is a very interesting drug that has properties other h2 blockers don't have including possible antiviral effect. Which may explain the lymph node involvement. Not sure what I will do if I need to go back on them.
I'm so sorry about this, BBT. We found out when I as a toddler that I am deathly allergic to horses (we had 2 and my grandfather was going to get me a pony and carriage...thanks for the crap genes, dad). In my late 20s, I developed an anaphylactic reaction to aspirin and its brethren. I can only take Tylenol. I haven't been stung by a bee in ages, but I wonder, Will I have my Epipen with me the day I do? Because, with me, who knows? Wasn't allergic before. Will I be now? My terrible "specialist" pediatrician said I would "outgrow the allergies". Sure, Conrad. All the old ones have stayed and new ones to pop up. I hope the trigger(s) can be found. It took me ages to understand it was aspirin. And then it was a doctor who gave me an aspirin product (after I told her about my allergy), and that caused the anaphylactic reaction. And this was before I had an Epipen, because horses are kind of easy to avoid. LOL. Hope you're feeling better. xo
Is there any chance you might have MCAS? Do you have EDS? I only ask because many of us can’t tolerate aspirin or NSAIDs - Tylenol only. And we don’t grow out of our allergies.
I always carry epi and liquid Benadryl - learned that lesson the hard way when I got stung by a wasp out on a walk alone and collapsed on the street. Do not recommend! lol
I don’t have EDS and suppose I could have MCAS, but things seem to be under control…I think? I got rid of my annual six-week sinus infection by cutting out grains (and nuts and eggs and legumes…had already cut out red meat and dairy). I’m allergic to opiates in that I projectile vomit (which a doctor told me is a ‘reaction’ not an allergy…I told her I’m allergic to throwing up), except for Darvocet, which, of course, they took off the market! But I was born with allergies, some of which I’ve outgrown…others, like animals, have stuck around. When I went to get the shots, I was allergic to so much, I’d have to get a shot in each arm, each week. Until the injection site would bleed, and then I quit. Enough was enough. When I had the anaphylactic reaction to the aspirin product, my allergist (the good one) said, “You can either pop a Benadryl or call 911.” LOL. I loved that man. My Bens have expired. I’ll have to get more. And sorry about the wasp experience! Scary to the effing max! xo
Worth keeping it in mind just in case - so much of what you’re describing aligns with my experience (and I cut out all the same foods as you too). Opiate allergy is also very common in MCAS.
I was so fortunate with the wasp that a kind person drove by and stopped for me! I was always taught never get in a car with a stranger - but I made an exception that day 😂😂
LOL. I’ve been there, too. On the fast lane side of the freeway early on a weekend morning heading to work, my car overheated. I had no choice but to pull over to the left because no one would let me over on the right. A very large, kind gentleman in a Corvette stopped. No one else did (and this was before cell phones). He offered to take me to work. Because of him, I was on time! There are good people in the world. xo
I adore that! Honestly I’ve been helped by strangers so many times - and most of the times I’ve been hurt has been people I’ve known. Kindness of strangers is very real.
I used to live in a rather scary neighbourhood with a needle exchange site and a homeless shelter - one night when I came home there was a man asking for money outside my apartment. I didn’t have any on me (I never carried cash when walking alone) and genuinely apologized for not having anything.
He offered to help me take my groceries upstairs! It retrospect it probably wasn’t the safest choice to allow a stranger to come up to my door - but he was so kind and the bags were heavy. I actually ended up making him a hot chocolate to go :)
That is lovely. I think if we listen to our intuition, we know. Good people give off good vibes. xo
BBT, just want to say how much I appreciate your writing. Your essays are clear, lucid, direct, and powerful. Every sentence advances the reader’s understanding. And your tone is a miracle of balance. You are a terrific resource, and I believe that you undoubtedly are helping many more people than you will ever know. Thank you!
This is so incredibly kind! You made my whole day with this comment.
Writing is hard work and takes the majority of my spoons on any given day - and comments like yours make all the effort and fatigue worth it. Thank YOU for reading and taking the time to comment 💜
Hi from your fellow MCAS ginger friend. Mine is not nearly as severe as yours. That truly sounds like a daily nightmare. The only food I seem to have newfound trouble with is garlic; the smell and taste makes me nauseated. Mostly I have skin reactions (eczema) and have had to cut out any products with fragrance because of how my skin reacts but also how much the smells affect my breathing and make me lightheaded.
Interestingly, I had a severe reaction to cromolyn sodium - ended up in the ER puking my brains out. I’m now on montekukast, hydroxyzine, and famotidine (Pepcid).
Not sure if you’re subscribed to Jodi Attenberg here on Substack, but she has a great MCAS resource page on her website: https://jodiettenberg.com/mast-cells/
(forgive me if you’re the one who told ME about HER - my brain isn’t working properly lately).
I think I was the one who told you about her - she’s a good friend and designed my logo (and honestly is the reason I ended up on substack!). Her resource will be linked in part two - it’s essential reading!
As for Cromolyn Sodium - did you start on a full dose? Many doctors don’t advise patients to go low and slow and it can make you have a severe reaction. I always think of it as the mast cells fighting back because they know they’re in trouble.
It took me months to work up to a therapeutic dose - but once I got there it made a big difference.
You’re right - my ID doc didn’t tell me to start off slowly. But I’m afraid it’s a bit like the “whiskey effect” - have one epically bad night with a substance and you’re turned off from it forever. I don’t think I could give it another shot. It’s okay for now; I think my MCAS is mostly under control. Still awaiting the results of my HAT test, too. I’ll keep you posted!
I completely understand that - and I hate that they didn’t tell you to go slow. It’s a sure fire way to fail the med. Grrr. Glad things are relatively well controlled though!
Just checked out the ER guidance doc - WOW. What a great resource. And just had me connecting the dots - I’ve long had an allergic reaction to morphine, and last year I reacted badly twice to corticosteroids. I’m also not tolerating alcohol at all these days. This is really illuminating - thank you for sharing it. I’ll boost your post in my next one.
You’re so welcome! I keep that guide on me at all times.
I also wasn’t this severe when I was first diagnosed (I had the condition long before COVID) but sadly things have progressed. Unsure if it’s a progressive condition or if perimenopause and other health issues are driving it - but it’s a lot more difficult to manage now versus in my thirties.
Oh, that title. Right there with ya.
I’ve been dealing with it for over a decade on my own, and only now do clinicians start to believe me.
H2 blockers work best for me…except then I have a bunch of nutrient deficiencies, especially b12.
Someday, I’ll just be eating rocks. 😂
I know the feeling! I used to have the best diet - I was big into wellness culture and made everything from scratch, all whole foods, even made my own nut milk and cheese. MCAS ruined all of that.
I’m going to tackle diet more in part 2 because it’s so hard to ensure all your nutritional needs are met when you’re a) taking a bunch of meds and b) reacting to every dang thing you put in your mouth!
Thank you, really informative, didn't know about the different presentations of anaphylaxis. Interesting as my daughter and I are both having more reactions to things since COVID, mostly runny eyes and nose and sometimes throat, so this is worth knowing! So sorry you're having to deal with this. I totally empathise with a smaller life, mine is more fatigue and pain related. X
I’m glad it was helpful! I honestly want to shout the anaphylaxis info from the rooftops as so many people don’t know - and it’s dangerous to be in untreated anaphylaxis.
I hope your allergies don’t progress to MCAS - but at least now that you’re aware you will have an idea what to watch out for. Part 2 will be a lot more in depth… it’s taking a long time to finish though.
Thank you xx
I have severe ME and after a year of tests for my gastrointestinal problems proving nothing, my ME specialist Dr Weir said it’s MCAS.
Problems began following a very severe UTI. I had 3 weeks of antibiotics. I lost weight so my husband and carer both wanted to feed me up with lots of high histamine food which I now recognize.
I’ve experienced pain & bloating for most of my adult life. First it was IBS then it was found I had coeliac disease so thought once gluten was removed all symptoms disappeared, but alas, no!
I’ve been eating with a heat pad & hot water bottle on my stomach for 15 months now but on 13th September the pain was so great I could no longer cope.
I even put a lot of weight on because I ate high calorific food and being bed bound, it was easy to gain weight. The heat numbed my stomach so I didn’t feel the pain. Unfortunately, this weight gain has gone against me and the heat no longer works.
I was admitted to hospital as a preventative measure to prevent malnutrition which so many people with severe ME have including dying of it. Read about Maeve Boothby O’Neil.
My GP suggested a course of TPN to give me gut rest which I so desperately need. That suggestion went against me too.
In hospital I wasn’t allowed my sodium cromoglicate, which I have to purchase from a pharmacy in Germany, because it’s unlicensed and my county of Dorset 🇬🇧 doesn’t prescribe it or Ketotifen.
I saw seven gastroenterologists none whom would contact my ME specialist because that would mean they’d have to admit they knew nothing about MCAS.
I did the dietitians suggested supplement diet of Fresubin over a long weekend which still caused me the same symptoms.
I was then visited by the nutrition support team led by a gastro consultant. She said I had functional gastric pain syndrome (code for its in your head). She put me on a low histamine & low Fodmap diet which I stuck to despite the pain, hives, bloating, itching, nausea plus my airway being compromised one evening.
No doctor would discuss MCAS.
The following week the nutrition support team visited me again led by gastro #7 and he said I should be discharged as wasting an NHs bed! Good start! Then he diagnosed me with severe constipation & prescribed a new medication which I was grateful for as I’d been requesting something to speed up my gut since admission. Again, he would not entertain MCAS. When I asked how can severe constipation cause allergic reactions he simply shrugged his shoulders and said I don’t know! Can’t fix everyone 100% he said. 🤷♀️
So I was discharged the next day and they emailed Dr Weir 5 days after discharge and not asking for advice!
Now I can’t eat anything without a severe reaction. The level of pain has reached a new high of which I can no longer cope. No meds or heat help. The only way to stop the pain is not to eat.
I’ve started a new feed but that has the same effect. Dr Weir wants me to have a NJ tube but I now suspect the MCAS is past the jejunum and so TPN via a PICC line is the best course of action in my opinion.
My private dietitian is referring me to a private neurogastroenterologist who knows MCAS well. I’m hoping he can tube me.
I’m exhausted with it all but mostly the pain.
I don’t know if other things than food affect me although stress definitely affects my gut.
My plan is to try and get MCAS on the NICE guidelines so it is taken seriously.
To end, if I’d been vomiting constantly or I’d lost 3 stone I may have been taken seriously. They can’t see my pain or my nausea and they ignored my photos of my distended abdomen and hives.
My stomach needs a very long rest rest because this ‘flare’ has been going on for 15 months and shows no sign of stopping.
I’m producing a Vlog on X & 🦋 so my journey is recorded incase I end up dying of malnutrition.
Thank you for writing about this subject 🙏
I’m so sorry for what you’ve been through - I didn’t realize Cromolyn and Ketotifen weren’t offered in Dorset. That’s terrible!
I’m very familiar with Maeve’s case unfortunately - as you said this is far too common for people with severe ME.
I hope you can get the support you both need and deserve - no one should be left to starve and suffer.
I have not been formally diagnosed with MCAS, because the treatment is the same for Chronic Idiopathic Urticaria, which I was formally diagnosed with, but my allergist and I are fairly confident that I have it. I am on Xolair, which thank god keeps it at bay most of the time, but it is still an UNHOLY pain in the ass. Thank you for raising awareness!
I’m so glad you were able to get on Xolair (and that it’s helping!).
The only thing I would add is that while the treatments may be the same - the management could be different in cases such as surgery. Because the mast cells release more than just histamine - I’ve found surgeons and anesthesiologists like to be aware of it because it can lead to more bleeding, issues with BP and heart rate and of course - difficult intubations.
That might be true of chronic idiopathic Utecaria too - I’m not sure. But perhaps just something to keep in mind? I was very difficult to keep under and bled way too much in all my surgeries.
Oh and likely have CFS / Sarcoidosis aswell but trying to get those tests challenging on NHS and private won’t either …
It's awful how hard we have to fight to get necessary tests. I hope you find someone to help soon!
This makes me wonder…. I am allergic to multiple anaesthetics and antibiotics, allergic or intolerant to loads of foods, mosquito and other bug bites leave with huge inflammation, I can’t use any other detergent than Fairy on my clothes, if a hotel uses wrong one I’m itching to death all night, can’t use anything either SLS in it (shampoos etc), allergic to chlorhexidine too….i wonder what will try and kill me next 🤷🏼♀️ but no doctor ever suggest MCAS ?
Sounds like it could be possible! MCAS is also known to get worse at night because histamine dumps in the evening.
Many doctors aren’t familiar with it and/or think it’s so rare they won’t consider it.
It wasn’t suggested to me for YEARS until a doctor diagnosed my POTS and EDS. MCAS is commonly seen with those disorders so she sent me to an MCAS specialist and he put the pieces together.
Thanks for the well-written and informative article. I’m still trying to figure out all the systems that were damaged by my COVID vaccine (and following ones). And how to cope with multiple issues when my PCP sends me to specialists for each discrete issue. All I do is go to doctors. And try to avoid getting COVID or any other diseases floating around. I finally have a name for my condition—PVS, for Post Vaccine Syndrome. I got accepted into the Yale LISTEN program as an observer, so I can now attend the infrequent zoom meetings where the doctors talk about their research. I found a support group for other PVS people (the study is for Long Covid, but they’ve recognized the parallels, so the support group is a godsend). I understand your situation completely, and have many of the same limitations (although I don’t have the extreme food experience that you do). Just knowing I’m not the only one with these types of issues is somehow comforting. Thanks so much for sharing your story.
I’m so glad you found this helpful - and I’m sorry that you’re struggling. We’re learning more all the time but still have a long way to go!
This is a really solid intro, and packed with resources. I clicked through to the Emergency guide. I've a few NIH articles that I saved to understand Cytokine storms from Covid.
I know that this is going to be a good series and brilliant resource for others. Raising awareness of MCAS is essential.
The emergency guide is invaluable - it’s helped me so many times (especially if at an ER where they aren’t familiar with me). The cytokine storm is definitely something to watch out for - and Covid is known to cause severe mast cell degranulation
Interestingly there was a study that came out recently showing that antihistamines may have some protective measures against COVID. Given the huge doses many of us take … perhaps we are lower risk than we realize!
A lot talking about food here, but you also touched on scents and that's something I'd love some help with. I'm trying to stick to natural and scent-free products because I have family members with high sensitivities, but many are ineffective, or some smell even worse. Are there certain types of scents you know of that are safer than others?
Unfortunately it varies wildly by individual. For me truly scent free tends to be best - and it’s important to learn to read labels because many “scent free” products have parfum or fragrance (nonsensical - but that’s been my experience).
Sometimes it’s best to DIY a product with handy ingredients you have around the house - and that way you can be sure it’s truly scent free.
I may consider doing a fourth post which will look at various do it yourself options for skin and body care. Many aren’t very hard and once you learn how to make a safe lotion you can make creams to assist with reactions by adding things like Benadryl and/or Cromolyn!
Thanks for this great introduction to MCAS! I rarely come across others who have this more atypical presentation. One of the earliest descriptions I saw of it was that we have “leaky” mast cells. We tend to have constant low level symptoms and when we trigger reactions they tend to take hours to days to show up. Trouble tends to sneak up on us, versus happening in dramatic stereotypical anaphylactic shock events. It doesn’t mean that we aren’t really sick. It just means that the journey to our reaction looks different.
My latest stupid trigger is the “rumble strips” on the Interstate Highways.There is LOTS of road construction and the lanes are being shifted so that traffic is driving directly on the “rumble strips”. When other cars drive on them and I can hear the sound I start having migraine, vision issues and pain in my ears and jaw. If the car I am in has to drive on them, I have excruciating bone pain and if we have to stay on the rumble strips long enough, I lose the ability to respond/speak/voluntarily move. It definitely makes leaving the house awkward.
Yes! That’s a great description. We absolutely have a different journey to reaction. My facial flushing has become constant these last two years - same with hives on my shoulders. So I know I’m low level reactive all the time. My bucket is so full that it doesn’t take much to tip me over into anaphylaxis (and don’t even get me started on rebound reactions and how horrible they are).
A rumble strip buddy! They trigger me as well. I’m so sorry you’re dealing with that but I’m also relieved I’m not the only one. Car rides in general trigger me but I can minimize it by running an air purifier in the car (my small Levoit can actually run off the cigarette lighter) and wearing an eye mask and headphones. But nothing helps with vibrations.
Thank you for covering this important topic. My MCAS is not as severe as yours, but it's been a wicked challenge. It was a great day when I discovered an H2 blocker combined with antihistamine could resolve some of the worst reactions.
I am not a fan of mast cells...
Looking forward to better understanding of how to prevent all reactions.
Make sure to check your nutrients, especially b12. H2 blockers are a lifesaver and a curse.
Completely agree with Holly - they’re a curse a lot of the time. I hate suppressing my stomach acid as I swear it’s made meeting my nutrition needs more difficult - but the mast cells were also destroying my stomach and esophagus and natural approaches had failed. It’s such a frustrating tight rope act.
My next article will include more dietary advice as well as various lifestyle changes that have made a big difference - for the first few years I focused on diet alone and ignored other aspects which was a mistake. It’s really a whole body disease that requires a big picture approach.
Agree about H2 blockers. I am fortunate to be able to go off of them most of the time these days. Been at this since the 90s. My last round with cimetidine led to swollen tender breasts (it always does that) but this time it led to painful hard lymph nodes to the point I ended up getting an ultrasound to see what was happening. It was only after that I found out that is a rare side effect. Stopped the med.. lymph glands calmed down.
It's always something!
Oh that’s interesting - I had no idea it could do that to lymph nodes. I had to have mine scanned as well and they’re still super swollen! Thanks for pointing that out.
It seems that very few show this as a possible side effect. My doctor was surprised. Here is the link that I found.
"Seek immediate medical attention if you have any of the following symptoms:
... swollen lymph glands
There is a lot of other stuff in the list they give.. including the breast issues I get.
https://www.medicines.org.uk/emc/product/1734/pil
Thank you! I don’t know if I can get off them right now (the reflux and GI issues are some of the worst I’ve had and I’m losing so much weight) but definitely going to talk it over with my doc. We’ve all been stumped about my lymph nodes and maybe this is the answer!
Wishing you luck. If you find an alternative that works as well, I would love to know. Cimetidine is a very interesting drug that has properties other h2 blockers don't have including possible antiviral effect. Which may explain the lymph node involvement. Not sure what I will do if I need to go back on them.
I had no Idea you could be in anaphylaxis and not have throat involvement - thank you for sharing
Bob
You’re so welcome - understanding anaphylaxis is critical to keeping yourself safe with MCAS!