▲ 3 r/MCAS

Does NSAID use increase histamine response?

Hey, everyone. What do you know about the possibility of NSAIDs increasing histamine responses?

Any links to research, news articles, and personal experience would be very appreciated.

-

Some of my personal backstory:

One specific allergy trigger keeps getting worse and it has escalated to the point of danger and madness. ...and now my persistent symptoms are so bad I don't know what to and I am also wondering if I am reacting to new things as well... I am in crisis and trying to figure out what is causing this or how to get out of it. I just started reading about the NSAID thing and am wondering if this issue is in play.

I have chronic pain due to a genetic condition and acquired illnesses. I have been on daily aspirin for a few years now. It helps immensely with my joint pain and allodynia. In the past year, I have also been Rx'd celebrex, as needed, for severe migraines. I have been using it probably about 1x every 3 days. It is by far the most effective migraine med I have ever tried, with *seemingly* no side effects, AND it started helping with a lot of disabling symptoms from some of my other health conditions.

I am also on a LOT of other OTC anti-inflammatories and thinks to help with pain (eg high concentrated fish oil, high dose Magnesium). These all help a lot but I am still in sleep-ruining and life-ruining pain. Just to say, I am not solely relying on nsaids and think I could replace them with more dietary and OTC stuff because I'm already doing those.

.

.

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u/WorriedAboutU7601937 — 7 hours ago
▲ 3 r/MCAS

Does a shower calm down your MCAS skin itching?

As the title asks: Does a shower calm down your MCAS skin itching?

I am trying to figure out if I have MCAS. I get itchy all over my skin from known triggers. A shower can stop that symptom if I catch it early enough. I only get persistent itching after many repeat exposures/flares in a condensed amount of time. I am wondering if folks who have diagnosed MCAS can stop their skin itching with a shower. My thought process being: if the answer is widely no, they can't, then perhaps this is not an MCAS reaction but something else.

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u/WorriedAboutU7601937 — 3 days ago

I have a bunch of rare diseases, and one undiagnosed life-ruining one that I am trying to figure out

Does anyone have any experience, info, leads that can help me figure out what the heck is going on with me and reacting to peanuts???? I have been treated for the past year on the presumption that it might be MCAS, but I am really starting to doubt that and don't know what to do next.

MCAS relevant framing: In May 2025, I described what peanuts do to me, and my doctor said it "sounds like an inappropriate histamine response" and has treated me on the presumption that I have MCAS. Cromolyn Sodium, daily OTC histamine (was already on daily Loratadine), and famotidine and/or alka seltzer gold for flares (I cannot tolerate these much due to it causing vomiting due to low stomach acid). None of these seem to produce any change. I typically have side effects to any Rx, and curiously, Cromolyn seems to do nothing. Other folks report having to carefully titrate up. It’s like drinking water for me.

Other background: I am medically disabled. I have a long list of diagnoses, but the big ones are: hEDS (aka hypermobile Ehler-Danlos Syndrome), Myalgic Encephalomyelitis (ME/CFS) (Since age 18, I am 41 now), Postural Orthostatic Tachycardia Syndrome (POTS). I have a LOT of allergies that are definitely “true allergies” (all the animals, all the trees and grasses, mold, etc). These are controlled mostly by controlling my environment and daily loratadine. Symptoms with these are immediate asthma, itchy water eyes, congestion and nose running. I also have severe food intolerances and crazy gut issues. Mainly, no gluten...I only eat in my own home to control gluten. Without gluten, crazy gut issues just seem to be crazy and not reactive to any particular foods (most MCAS patients report histamine symptoms from specific foods). I have the “IBS” label and chronic candida, low stomach acid which I take Betaine Pepsin for (otherwise I will be throwing up a lot).

Ok, info dump incoming…

My main questions:
DOES ANYONE HAVE A SIMILAR REACTION TO PEANUTS OR ANYTHING ELSE?

CAN ANYONE STEER ME TO INFO THAT MIGHT HELP ME FIGURE THIS OUT?

Thank you so much in advance. <3

PEANUTTING: Symptoms are clear when I am exposed: My scalp gets this very specific itchy-prickly. Then, my skin gets itchy, started with my feet/legs and moves up my body, underneath my clothes. Sometimes I also have tightness in my breathing, but never a scary amount.

The initial symptoms themselves don’t seem to be that big of a problem, but they are an ALERT that I’m about to be fucked for weeks to months.

Symptoms after exposure: Brain cognition essentially shuts off. I have no short term memory or much access to long term memory. I will forget what I’m doing while I’m trying to do it. I can’t read. Verbal processing is minimal to zero. It is almost physically impossible but also dangerous for me to be out of bed. Extreme drowsiness. I can not stay awake but also don’t sleep well because I am in so much pain that lying in the bed hurts. I am so fatigued and in so much pain, it’s hard to roll over and reposition in the bed. I am bedridden except to toilet for at least a week, sometimes more, and then it is only with a lot of caffeine that I can try to be out of bed. I need assistance to shower or bathe for the first 7-10 days. I need to be fed in bed. My entire body gets puffy in a way unlike any bloating or other medical issue I have.
I also have mental/mood disturbances. Highly irritable to angry. I hate everyone and everything. I want to break up with my boyfriend and end friendships. (This is NOT my personality. This is the absolute opposite.) I become a crazy person. If I am ever not sure if I am in a major ME/CFS crash or had a peanut exposure, the way I can tell is the mood disturbances and that the recovery is even worse than an ME crash.

It takes many weeks to months to recover back to baseline.

History of peanut allergy:

I was not allergic to peanuts until age 22/23. I used to eat plenty of it. Cheap, delicious protein source.

I suddenly became allergic to peanuts and some other tree nuts seemingly overnight and my gluten intolerance escalated from lifelong tummy aches and bloating to mega problems. Almonds, macadamias, cashews = swollen itchy throat, difficulty breathing. What I would consider a “true” allergic reaction for some tree nuts started for the first time...the peanut problem was new at the same time, but different symptoms.

I actually thought I had a reoccurring or relapsing flu for a summer. I already had ME/CFS, so I was accustomed to chronic pain and “crashes,” but the peanut reaction would happen very quickly, then I would be literally stuck in bed with fatigue, EXTREME body pain, low cognition, and I would sleep almost continuously for 1-3 days. One day, I got struck with symptoms right after my lunch break – I had a fine first half of my shift, ate lunch, when I clocked back in, I suddenly could not figure out how to do my job, I was weak, I felt a bit dizzy and like my body was trying to fall asleep while I was standing up. My manager noticed something was wrong and asked me if I was ok. I had to leave immediately, and then, again, was “sick” for a few days. Because of that sudden onset, I started to suspect it might be a food reaction, not an illness, and started tracking foods. Eventually peanut was on the suspect list (someone gave me a small handful of trail mix right before I clocked back in after my lunch that day I had to leave work), so I strictly cut it out of my diet for a significant period of time. The “flus” stopped, but then I decided to “test” my theory on purpose when someone bought me a peanut butter muffin on a Friday afternoon, and I had no plans for the weekend. My boss pre-approved me not coming to work on Monday if I had the reaction. Roommate agreed to look in on me to make sure I drank water and ate a little...I went home, got ready for bed, ate the muffin in the early evening, had the reaction, slept for 3 days in excruciating pain. Couldn’t go in Monday (Day 3). Tuesday I went back to work but I was still impaired for another few days. Back to “normal” in about a full week.

I went to allergist around this time. Did blood test for foods, nothing terribly remarkable which was surprising. Skin prick for environmental and animals = I was highly reactive to almost everything. She diagnosed "oral food allergies" at that time. She did not know what to say about the peanuts. I can’t remember if we did a blood test at that time for peanuts or not. I stopped eating them completely, hoping that maybe it was an acquired allergy from eating “too much” and it would subside with time. It did not. It has only gotten worse and worse over the years. It used to be that I just couldn’t ingest it (one bite = full reaction), now I cannot be in the vicinity of a peanut without having the full reaction.

Every exposure since my 20s has lasted longer and been more severe. When I “tested” my theory at age 23, I ate a peanut butter muffin and was knocked out for the weekend, and it took about 1 week to totally recover. Aug 2019, someone hugged me after they had touched/eaten peanuts and I was bedridden for about 2 or 3 weeks, and then I felt back to normal by about 6-8 weeks.

Most recent exposures:

Dec 2024: niece opened a Larabar that had peanuts in it when we were in the car (so I didn’t even ingest or touch it) and I was totally bedridden for 2 months and mostly in bed for another 2 months. I cleaned the car the day of the exposure, but the next time I rode it in, symptoms went up. Mom then cleaned the car with my direction. Again, it seemed to re-expose me. I had to have someone take my car to be professionally cleaned by a man who specifically does allergy-related cleanings and then it was ok.

Oct 28, 2025: a hug in the driveway from someone who said they hadn’t even eaten anything that day). Barely functional all of Nov and most of Dec. I unfortunately immediately went into my house, into my office and started working on the computer and about 10 min later, hit a wall and realized what may have happened. So…my office was contaminated and I continued to react every time I went in the room despite cleaning insanely and repeatedly, despite precautions every time I had to go in the room (coveralls, mask, gloves, which I then would take off on my way out so it wouldn’t get into the rest of the house →immediately get into the shower), despite the fact that I barely went in.

A week before Christmas, I *started* to be able to be out of bed and do some things again...then

Dec 24 2025, family party. Everyone knew not to bring peanut foods, etc. Everything was fine and fun for a few hours. “Flipz” pretzels were put out with desserts. I started feeling symptomatic - tingles on the scalp. Looked at package: “made in shared facility with peanuts.” On the way home, scalp tingles progressed to itchy skin… We jumped into action with the OTC interventions (pepcid, benadryl, etc) but I fully went down. I did not start to be able to do anything until about mid March. Only after 1st week of April did I feel like I was finally over it.

Mid-May: at Genoa pharmacy, candy jar had foil wrapped Reese’s cups - managed to clock symptoms immediately after getting into Dad’s car and not bring anything into the house, etc...immediate shower/ “decontamination” procedure, so it didn’t take me all the way down.

June 5, 2026: took me all the way out. Brother came to visit. He had peanut butter with his breakfast, but fully showered, brushed teeth, clean clothes, etc and didn’t come over to my house until about 4pm. He picked up meds from Genoa. So again, in the little vestibule where they have a candy dish. He hugged me on arrival, we sat down to chat, and I got the itchy scalp. I sent him home right away, set about cleaning, etc, got in the shower, the whole deal… No dice. I was fucked.

June 15, 2026: Got in Mom’s car to go see the Allergist-Immunologist. Reaction started as we drove away and continued to escalate throughout the day (Doc was 20min away, then we had blood labs and an Rx to pick up, so I was essentially in and out of the car for several hours). Mom doesn’t eat in the car, keeps it very clean, etc. Had it professionally cleaned after the incident – No wrapper or peanuts found. No idea how a peanut could have gotten in except that a grandchild rode in the car the weekend before my appt. (Side theory: I have a new trigger that makes the same crazy reaction as peanuts)

----

I am in crisis. I am afraid to leave my house or let anyone inside (which is bad because I’m so unwell I need to be looked after). My short term goal is to control the reactions so I can recover enough to think straight. My baseline is so profoundly low, it is hard to tell if I have been re-exposed or not.

I am following up with the Allergist-Immunologist (who does not seem to be willing or able to treat me for this) and my Integrative MD (who has been treating for presumed MCAS but I think he is out of ideas on this). Integrative MD offered to give me a compounded Ketotifen Rx, but I am hesitant to throw anything else into the mix, because I really have no idea if this is MCAS or not!
My family is looking for leads for other allergists / doctors who might be equipped to deal with this, but that is probably going to be out of state, which is a huge logistic and financial difficulty. I am in CT, USA.

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u/WorriedAboutU7601937 — 3 days ago

Can eating peas make peanut allergy worse?

Sometimes products with pea ingredients mention to consume with caution if you have a peanut allergy. (I guess because something about the 2 legumes is similar). Does anyone have experience they can share with peas seeming to be -or definitely not being- a problem?? I have increasing sensitivity to peanuts. I eat peas and started using pea protein in smoothies, seemingly with no problems...but I am wondering if increased pea consumption is making my peanut issues worse. I would say I've eaten more peas in this past year than previously, and I am having more peanut related sensitivity and reactions. Thank you for any info or experience.

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u/WorriedAboutU7601937 — 3 days ago

Abnormal Peanut Reaction, anyone experience this? Is it allergy? MCAS? or WHAT!?

Well, it's been about 20 years of increasing hell, and it's come down to posting on the internet to see if anyone has similar experiences...

I don't seem to have a "true" peanut allergy, but I have a severe, abnormal reaction to it. It started age 22 at which point I had to ingest it to react. Now, in my early 40s I have the full reaction from skin contact and possibly airborne.

One consult with an allergist and they basically said they don't know how to treat me, but that I should carry 2 epipens on me at all times (even just around the house) because I am so sensitive and reactive that they are concerned it could go anaphylactic at any time.

Has anyone experienced or even heard of anything like this!?! I am currently in crisis and don't know what to do.

Thank you so much in advance. <3

PEANUTTING: Symptoms are clear when I am exposed: My scalp gets this very specific itchy-prickly. Then, my skin gets itchy, started with my feet/legs and moves up my body, underneath my clothes. Sometimes I also have tightness in my breathing, but never a scary amount.

The initial symptoms themselves don’t seem to be that big of a problem, but they are an ALERT that I’m about to be fucked for weeks to months.

Symptoms after exposure: Brain cognition essentially shuts off. I have no short term memory or much access to long term memory. I will forget what I’m doing while I’m trying to do it. I can’t read. Verbal processing is minimal to zero. It is almost physically impossible but also dangerous for me to be out of bed. Extreme drowsiness. I can not stay awake but also don’t sleep well because I am in so much pain that lying in the bed hurts. I am so fatigued and in so much pain, it’s hard to roll over and reposition in the bed. I am bedridden except to toilet for at least a week, sometimes more, and then it is only with a lot of caffeine that I can try to be out of bed. I need assistance to shower or bathe for the first 7-10 days. I need to be fed in bed. My entire body gets puffy in a way unlike any bloating or other medical issue I have.
I also have mental/mood disturbances. Highly irritable to angry. I hate everyone and everything. I want to break up with my boyfriend and end friendships. (This is NOT my personality. This is the absolute opposite.) I become a crazy person. If I am ever not sure if I am in a major ME/CFS crash or had a peanut exposure, the way I can tell is the mood disturbances and that the recovery is even worse than an ME crash.

It takes many weeks to months to recover back to baseline.

History of peanut allergy:

I was not allergic to peanuts until age 22/23. I used to eat plenty of it. Cheap, delicious protein source.

I suddenly became allergic to peanuts and some other tree nuts seemingly overnight and my gluten intolerance escalated from lifelong tummy aches and bloating to mega problems. Almonds, macadamias, cashews = swollen itchy throat, difficulty breathing. What I would consider a “true” allergic reaction for some tree nuts started for the first time...the peanut problem was new at the same time, but different symptoms.

I actually thought I had a reoccurring or relapsing flu for a summer. I already had ME/CFS, so I was accustomed to chronic pain and “crashes,” but the peanut reaction would happen very quickly, then I would be literally stuck in bed with fatigue, EXTREME body pain, low cognition, and I would sleep almost continuously for 1-3 days. One day, I got struck with symptoms right after my lunch break – I had a fine first half of my shift, ate lunch, when I clocked back in, I suddenly could not figure out how to do my job, I was weak, I felt a bit dizzy and like my body was trying to fall asleep while I was standing up. My manager noticed something was wrong and asked me if I was ok. I had to leave immediately, and then, again, was “sick” for a few days. Because of that sudden onset, I started to suspect it might be a food reaction, not an illness, and started tracking foods. Eventually peanut was on the suspect list (someone gave me a small handful of trail mix right before I clocked back in after my lunch that day I had to leave work), so I strictly cut it out of my diet for a significant period of time. The “flus” stopped, but then I decided to “test” my theory on purpose when someone bought me a peanut butter muffin on a Friday afternoon, and I had no plans for the weekend. My boss pre-approved me not coming to work on Monday if I had the reaction. Roommate agreed to look in on me to make sure I drank water and ate a little...I went home, got ready for bed, ate the muffin in the early evening, had the reaction, slept for 3 days in excruciating pain. Couldn’t go in Monday (Day 3). Tuesday I went back to work but I was still impaired for another few days. Back to “normal” in about a full week.

I went to allergist around this time. Did blood test for foods, nothing terribly remarkable which was surprising. Skin prick for environmental and animals = I was highly reactive to almost everything. She diagnosed "oral food allergies" at that time. She did not know what to say about the peanuts. I can’t remember if we did a blood test at that time for peanuts or not. I stopped eating them completely, hoping that maybe it was an acquired allergy from eating “too much” and it would subside with time. It did not. It has only gotten worse and worse over the years. It used to be that I just couldn’t ingest it (one bite = full reaction), now I cannot be in the vicinity of a peanut without having the full reaction.

Every exposure since my 20s has lasted longer and been more severe. When I “tested” my theory at age 23, I ate a peanut butter muffin and was knocked out for the weekend, and it took about 1 week to totally recover. Aug 2019, someone hugged me after they had touched/eaten peanuts and I was bedridden for about 2 or 3 weeks, and then I felt back to normal by about 6-8 weeks. Now, I am at that level of slow recovery and I am even more reactive. I am so sensitive, it honestly seems like it has to be imaginary, but it definitely is not.

Since Dec 2024, I have had more and more reactions, and instead of just the initial event and fallout being a problem, any clothing or belongings seem to be "contaminated." I have to carefully come in my house, disrobe and put everything in a garbage bag in the garage, walk straight to the shower to wash thoroughly to stop the initial itching reaction from continuing. If I touch anything or leave any items elsewhere in the house, I will then have reactions when I touch those items or areas again. Last fall, I hugged someone outside my house and came in and sat at the computer before realizing it happened. I basically contaminated the room - I continued to react to the room despite insane, repeated cleaning, getting a new keyboard, wearing coveralls which I would leave in the office and then go straight into the shower from. The most exposure, I did the garage protocol and Boyfriend came to clean / throw stuff away from the garage and he made an error with using an "in house" trash can, which caused me to continue to react when being in the room that that trash can ended up back in.

----

I am in crisis. I am afraid to leave my house or let anyone inside (which is bad because I’m so unwell I need to be looked after). My short term goal is to control the reactions so I can recover enough to think straight. My baseline is so profoundly low, it is hard to tell if I have been re-exposed or not.

I am following up with the Allergist-Immunologist (who does not seem to be willing or able to treat me for this) and my Integrative MD (who has been treating for presumed MCAS but I think he is out of ideas on this).
My family is looking for leads for other allergists / doctors who might be equipped to deal with this, but that is probably going to be out of state, which is a huge logistic and financial difficulty. I am in CT, USA.

Other background: I am medically disabled. I have a long list of diagnoses, but the big ones are: hEDS (aka hypermobile ehler-danlos),Myalgic Encephalomyelitis (ME/CFS) (Since age 18, I am 41 now), Postural Orthostatic Tachycardia Syndrome (POTS). I have a LOT of allergies that are definitely “true allergies” (all the animals, all the trees and grasses, mold, etc). These are controlled mostly by controlling my environment and daily loratadine. Symptoms with these are immediate asthma, itchy water eyes, congestion and nose running. I also have severe food intolerances and crazy gut issues. Mainly, no gluten...I only eat in my own home to control gluten. Without gluten, crazy gut issues just seem to be crazy and not reactive to any particular foods besides those that I have identified and avoid. I have the “IBS” label and chronic candida, low stomach acid which I take Betaine Pepsin for (otherwise I will be throwing up a lot).

Could this be MCAS? In May 2025, I described what peanuts do to me, and my doctor said it "sounds like an inappropriate histamine response" and has treated me on the presumption that I have MCAS. Cromolyn Sodium, daily OTC histamine (was already on daily Loratadine), and famotidine and/or alka seltzer gold for flares (I cannot tolerate these much due to it causing vomiting due to low stomach acid). None of these seem to produce any change. I typically have side effects to any Rx, and curiously, Cromolyn seems to do nothing. Other folks report having to carefully titrate up. It’s like drinking water for me.

I used to have to INGEST peanuts to have this reaction, but now it seems possibly airborne and DEFINITELY from skin contact.

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u/WorriedAboutU7601937 — 3 days ago

Severe, abnormal reaction to peanuts. Anyone else experience this???

Well, it's been about 20 years of increasing hell, and it's come down to posting on the internet to see if anyone has similar experiences or advice.

My main question is: DOES ANYONE HAVE A SIMILAR REACTION TO PEANUTS OR ANYTHING ELSE?

Thank you so much in advance. <3

PEANUTTING: Symptoms are clear when I am exposed: My scalp gets this very specific itchy-prickly. Then, my skin gets itchy, started with my feet/legs and moves up my body, underneath my clothes. Sometimes I also have tightness in my breathing, but never a scary amount.

The initial symptoms themselves don’t seem to be that big of a problem, but they are an ALERT that I’m about to be fucked for weeks to months.

Symptoms after exposure: Brain cognition essentially shuts off. I have no short term memory or much access to long term memory. I will forget what I’m doing while I’m trying to do it. I can’t read. Verbal processing is minimal to zero. It is almost physically impossible but also dangerous for me to be out of bed. Extreme drowsiness. I can not stay awake but also don’t sleep well because I am in so much pain that lying in the bed hurts. I am so fatigued and in so much pain, it’s hard to roll over and reposition in the bed. I am bedridden except to toilet for at least a week, sometimes more, and then it is only with a lot of caffeine that I can try to be out of bed. I need assistance to shower or bathe for the first 7-10 days. I need to be fed in bed. My entire body gets puffy in a way unlike any bloating or other medical issue I have.
I also have mental/mood disturbances. Highly irritable to angry. I hate everyone and everything. I want to break up with my boyfriend and end friendships. (This is NOT my personality. This is the absolute opposite.) I become a crazy person. If I am ever not sure if I am in a major ME/CFS crash or had a peanut exposure, the way I can tell is the mood disturbances and that the recovery is even worse than an ME crash.

It takes many weeks to months to recover back to baseline.

History of peanut allergy:

I was not allergic to peanuts until age 22/23. I used to eat plenty of it. Cheap, delicious protein source.

I suddenly became allergic to peanuts and some other tree nuts seemingly overnight and my gluten intolerance escalated from lifelong tummy aches and bloating to mega problems. Almonds, macadamias, cashews = swollen itchy throat, difficulty breathing. What I would consider a “true” allergic reaction for some tree nuts started for the first time...the peanut problem was new at the same time, but different symptoms.

I actually thought I had a reoccurring or relapsing flu for a summer. I already had ME/CFS, so I was accustomed to chronic pain and “crashes,” but the peanut reaction would happen very quickly, then I would be literally stuck in bed with fatigue, EXTREME body pain, low cognition, and I would sleep almost continuously for 1-3 days. One day, I got struck with symptoms right after my lunch break – I had a fine first half of my shift, ate lunch, when I clocked back in, I suddenly could not figure out how to do my job, I was weak, I felt a bit dizzy and like my body was trying to fall asleep while I was standing up. My manager noticed something was wrong and asked me if I was ok. I had to leave immediately, and then, again, was “sick” for a few days. Because of that sudden onset, I started to suspect it might be a food reaction, not an illness, and started tracking foods. Eventually peanut was on the suspect list (someone gave me a small handful of trail mix right before I clocked back in after my lunch that day I had to leave work), so I strictly cut it out of my diet for a significant period of time. The “flus” stopped, but then I decided to “test” my theory on purpose when someone bought me a peanut butter muffin on a Friday afternoon, and I had no plans for the weekend. My boss pre-approved me not coming to work on Monday if I had the reaction. Roommate agreed to look in on me to make sure I drank water and ate a little...I went home, got ready for bed, ate the muffin in the early evening, had the reaction, slept for 3 days in excruciating pain. Couldn’t go in Monday (Day 3). Tuesday I went back to work but I was still impaired for another few days. Back to “normal” in about a full week.

I went to allergist around this time. Did blood test for foods, nothing terribly remarkable which was surprising. Skin prick for environmental and animals = I was highly reactive to almost everything. She diagnosed "oral food allergies" at that time. She did not know what to say about the peanuts. I can’t remember if we did a blood test at that time for peanuts or not. I stopped eating them completely, hoping that maybe it was an acquired allergy from eating “too much” and it would subside with time. It did not. It has only gotten worse and worse over the years. It used to be that I just couldn’t ingest it (one bite = full reaction), now I cannot be in the vicinity of a peanut without having the full reaction.

Every exposure since my 20s has lasted longer and been more severe. When I “tested” my theory at age 23, I ate a peanut butter muffin and was knocked out for the weekend, and it took about 1 week to totally recover. Aug 2019, someone hugged me after they had touched/eaten peanuts and I was bedridden for about 2 or 3 weeks, and then I felt back to normal by about 6-8 weeks.

Most recent exposures:

Dec 2024: niece opened a Larabar that had peanuts in it when we were in the car (so I didn’t even ingest or touch it) and I was totally bedridden for 2 months and mostly in bed for another 2 months. I cleaned the car the day of the exposure, but the next time I rode it in, symptoms went up. Mom then cleaned the car with my direction. Again, it seemed to re-expose me. I had to have someone take my car to be professionally cleaned by a man who specifically does allergy-related cleanings and then it was ok.

Oct 28, 2025: a hug in the driveway from someone who said they hadn’t even eaten anything that day). Barely functional all of Nov and most of Dec. I unfortunately immediately went into my house, into my office and started working on the computer and about 10 min later, hit a wall and realized what may have happened. So…my office was contaminated and I continued to react every time I went in the room despite cleaning insanely and repeatedly, despite precautions every time I had to go in the room (coveralls, mask, gloves, which I then would take off on my way out so it wouldn’t get into the rest of the house →immediately get into the shower), despite the fact that I barely went in.

A week before Christmas, I *started* to be able to be out of bed and do some things again...then

Dec 24 2025, family party. Everyone knew not to bring peanut foods, etc. Everything was fine and fun for a few hours. “Flipz” pretzels were put out with desserts. I started feeling symptomatic - tingles on the scalp. Looked at package: “made in shared facility with peanuts.” On the way home, scalp tingles progressed to itchy skin… We jumped into action with the OTC interventions (pepcid, benadryl, etc) but I fully went down. I did not start to be able to do anything until about mid March. Only after 1st week of April did I feel like I was finally over it.

Mid-May: at Genoa pharmacy, candy jar had foil wrapped Reese’s cups - managed to clock symptoms immediately after getting into Dad’s car and not bring anything into the house, etc...immediate shower/ “decontamination” procedure, so it didn’t take me all the way down.

June 5, 2026: took me all the way out. Brother came to visit. He had peanut butter with his breakfast, but fully showered, brushed teeth, clean clothes, etc and didn’t come over to my house until about 4pm. He picked up meds from Genoa. So again, in the little vestibule where they have a candy dish. He hugged me on arrival, we sat down to chat, and I got the itchy scalp. I sent him home right away, set about cleaning, etc, got in the shower, the whole deal… No dice. I was fucked.

June 15, 2026: Got in Mom’s car to go see the Allergist-Immunologist. Reaction started as we drove away and continued to escalate throughout the day (Doc was 20min away, then we had blood labs and an Rx to pick up, so I was essentially in and out of the car for several hours). Mom doesn’t eat in the car, keeps it very clean, etc. Had it professionally cleaned after the incident – No wrapper or peanuts found. No idea how a peanut could have gotten in except that a grandchild rode in the car the weekend before my appt. (Side theory: I have a new trigger that makes the same crazy reaction as peanuts)

----

I am in crisis. I am afraid to leave my house or let anyone inside (which is bad because I’m so unwell I need to be looked after). My short term goal is to control the reactions so I can recover enough to think straight. My baseline is so profoundly low, it is hard to tell if I have been re-exposed or not.

I am following up with the Allergist-Immunologist (who does not seem to be willing or able to treat me for this) and my Integrative MD (who has been treating for presumed MCAS but I think he is out of ideas on this). Integrative MD offered to give me a compounded Ketotifen Rx, but I am hesitant to throw anything else into the mix, because I really have no idea if this is MCAS or not!
My family is looking for leads for other allergists / doctors who might be equipped to deal with this, but that is probably going to be out of state, which is a huge logistic and financial difficulty. I am in CT, USA.

Other background: I am medically disabled. I have a long list of diagnoses, but the big ones are: hEDS (aka hypermobile ehler-danlos),Myalgic Encephalomyelitis (ME/CFS) (Since age 18, I am 41 now), Postural Orthostatic Tachycardia Syndrome (POTS). I have a LOT of allergies that are definitely “true allergies” (all the animals, all the trees and grasses, mold, etc). These are controlled mostly by controlling my environment and daily loratadine. Symptoms with these are immediate asthma, itchy water eyes, congestion and nose running. I also have severe food intolerances and crazy gut issues. Mainly, no gluten...I only eat in my own home to control gluten. Without gluten, crazy gut issues just seem to be crazy and not reactive to any particular foods (most MCAS patients report histamine symptoms from specific foods). I have the “IBS” label and chronic candida, low stomach acid which I take Betaine Pepsin for (otherwise I will be throwing up a lot).

MCAS relevant framing: In May 2025, I described what peanuts do to me, and my doctor said it "sounds like an inappropriate histamine response" and has treated me on the presumption that I have MCAS. Cromolyn Sodium, daily OTC histamine (was already on daily Loratadine), and famotidine and/or alka seltzer gold for flares (I cannot tolerate these much due to it causing vomiting due to low stomach acid). None of these seem to produce any change. I typically have side effects to any Rx, and curiously, Cromolyn seems to do nothing. Other folks report having to carefully titrate up. It’s like drinking water for me.

I used to have to INGEST peanuts to have this reaction, but now it seems possibly airborne and DEFINITELY from skin contact.

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u/WorriedAboutU7601937 — 3 days ago
▲ 3 r/MCAS

Is this MCAS? Abnormal peanut reaction

Well, it's been about 20 years of increasing hell, and it's come down to posting on the internet to see if anyone has similar experiences or advice.

MCAS relevant framing: In May 2025, I described what peanuts do to me, and my doctor said it "sounds like an inappropriate histamine response" and has treated me on the presumption that I have MCAS. Cromolyn Sodium, daily OTC histamine (was already on daily Loratadine), and famotidine and/or alka seltzer gold for flares (I cannot tolerate these much due to it causing vomiting due to low stomach acid). None of these seem to produce any change. I typically have side effects to any Rx, and curiously, Cromolyn seems to do nothing. Other folks report having to carefully titrate up. It’s like drinking water for me.

Other background: I am medically disabled. I have a long list of diagnoses, but the big ones are: hEDS (aka hypermobile ehler-danlos),Myalgic Encephalomyelitis (ME/CFS) (Since age 18, I am 41 now), Postural Orthostatic Tachycardia Syndrome (POTS). I have a LOT of allergies that are definitely “true allergies” (all the animals, all the trees and grasses, mold, etc). These are controlled mostly by controlling my environment and daily loratadine. Symptoms with these are immediate asthma, itchy water eyes, congestion and nose running. I also have severe food intolerances and crazy gut issues. Mainly, no gluten...I only eat in my own home to control gluten. Without gluten, crazy gut issues just seem to be crazy and not reactive to any particular foods (most MCAS patients report histamine symptoms from specific foods). I have the “IBS” label and chronic candida, low stomach acid which I take Betaine Pepsin for (otherwise I will be throwing up a lot).

Ok, info dump incoming…

My main questions: DO YOU THINK THIS SOUNDS LIKE MCAS OR NOT?
DOES ANYONE HAVE A SIMILAR REACTION TO PEANUTS OR ANYTHING ELSE?

Thank you so much in advance. <3

PEANUTTING: Symptoms are clear when I am exposed: My scalp gets this very specific itchy-prickly. Then, my skin gets itchy, started with my feet/legs and moves up my body, underneath my clothes. Sometimes I also have tightness in my breathing, but never a scary amount.

The initial symptoms themselves don’t seem to be that big of a problem, but they are an ALERT that I’m about to be fucked for weeks to months.

Symptoms after exposure: Brain cognition essentially shuts off. I have no short term memory or much access to long term memory. I will forget what I’m doing while I’m trying to do it. I can’t read. Verbal processing is minimal to zero. It is almost physically impossible but also dangerous for me to be out of bed. Extreme drowsiness. I can not stay awake but also don’t sleep well because I am in so much pain that lying in the bed hurts. I am so fatigued and in so much pain, it’s hard to roll over and reposition in the bed. I am bedridden except to toilet for at least a week, sometimes more, and then it is only with a lot of caffeine that I can try to be out of bed. I need assistance to shower or bathe for the first 7-10 days. I need to be fed in bed. My entire body gets puffy in a way unlike any bloating or other medical issue I have.
I also have mental/mood disturbances. Highly irritable to angry. I hate everyone and everything. I want to break up with my boyfriend and end friendships. (This is NOT my personality. This is the absolute opposite.) I become a crazy person. If I am ever not sure if I am in a major ME/CFS crash or had a peanut exposure, the way I can tell is the mood disturbances and that the recovery is even worse than an ME crash.

It takes many weeks to months to recover back to baseline.

History of peanut allergy:

I was not allergic to peanuts until age 22/23. I used to eat plenty of it. Cheap, delicious protein source.

I suddenly became allergic to peanuts and some other tree nuts seemingly overnight and my gluten intolerance escalated from lifelong tummy aches and bloating to mega problems. Almonds, macadamias, cashews = swollen itchy throat, difficulty breathing. What I would consider a “true” allergic reaction for some tree nuts started for the first time...the peanut problem was new at the same time, but different symptoms.

I actually thought I had a reoccurring or relapsing flu for a summer. I already had ME/CFS, so I was accustomed to chronic pain and “crashes,” but the peanut reaction would happen very quickly, then I would be literally stuck in bed with fatigue, EXTREME body pain, low cognition, and I would sleep almost continuously for 1-3 days. One day, I got struck with symptoms right after my lunch break – I had a fine first half of my shift, ate lunch, when I clocked back in, I suddenly could not figure out how to do my job, I was weak, I felt a bit dizzy and like my body was trying to fall asleep while I was standing up. My manager noticed something was wrong and asked me if I was ok. I had to leave immediately, and then, again, was “sick” for a few days. Because of that sudden onset, I started to suspect it might be a food reaction, not an illness, and started tracking foods. Eventually peanut was on the suspect list (someone gave me a small handful of trail mix right before I clocked back in after my lunch that day I had to leave work), so I strictly cut it out of my diet for a significant period of time. The “flus” stopped, but then I decided to “test” my theory on purpose when someone bought me a peanut butter muffin on a Friday afternoon, and I had no plans for the weekend. My boss pre-approved me not coming to work on Monday if I had the reaction. Roommate agreed to look in on me to make sure I drank water and ate a little...I went home, got ready for bed, ate the muffin in the early evening, had the reaction, slept for 3 days in excruciating pain. Couldn’t go in Monday (Day 3). Tuesday I went back to work but I was still impaired for another few days. Back to “normal” in about a full week.

I went to allergist around this time. Did blood test for foods, nothing terribly remarkable which was surprising. Skin prick for environmental and animals = I was highly reactive to almost everything. She diagnosed "oral food allergies" at that time. She did not know what to say about the peanuts. I can’t remember if we did a blood test at that time for peanuts or not. I stopped eating them completely, hoping that maybe it was an acquired allergy from eating “too much” and it would subside with time. It did not. It has only gotten worse and worse over the years. It used to be that I just couldn’t ingest it (one bite = full reaction), now I cannot be in the vicinity of a peanut without having the full reaction.

Every exposure since my 20s has lasted longer and been more severe. When I “tested” my theory at age 23, I ate a peanut butter muffin and was knocked out for the weekend, and it took about 1 week to totally recover. Aug 2019, someone hugged me after they had touched/eaten peanuts and I was bedridden for about 2 or 3 weeks, and then I felt back to normal by about 6-8 weeks.

Most recent exposures:

Dec 2024: niece opened a Larabar that had peanuts in it when we were in the car (so I didn’t even ingest or touch it) and I was totally bedridden for 2 months and mostly in bed for another 2 months. I cleaned the car the day of the exposure, but the next time I rode it in, symptoms went up. Mom then cleaned the car with my direction. Again, it seemed to re-expose me. I had to have someone take my car to be professionally cleaned by a man who specifically does allergy-related cleanings and then it was ok.

Oct 28, 2025: a hug in the driveway from someone who said they hadn’t even eaten anything that day). Barely functional all of Nov and most of Dec. I unfortunately immediately went into my house, into my office and started working on the computer and about 10 min later, hit a wall and realized what may have happened. So…my office was contaminated and I continued to react every time I went in the room despite cleaning insanely and repeatedly, despite precautions every time I had to go in the room (coveralls, mask, gloves, which I then would take off on my way out so it wouldn’t get into the rest of the house →immediately get into the shower), despite the fact that I barely went in.

A week before Christmas, I *started* to be able to be out of bed and do some things again...then

Dec 24 2025, family party. Everyone knew not to bring peanut foods, etc. Everything was fine and fun for a few hours. “Flipz” pretzels were put out with desserts. I started feeling symptomatic - tingles on the scalp. Looked at package: “made in shared facility with peanuts.” On the way home, scalp tingles progressed to itchy skin… We jumped into action with the OTC interventions (pepcid, benadryl, etc) but I fully went down. I did not start to be able to do anything until about mid March. Only after 1st week of April did I feel like I was finally over it.

Mid-May: at Genoa pharmacy, candy jar had foil wrapped Reese’s cups - managed to clock symptoms immediately after getting into Dad’s car and not bring anything into the house, etc...immediate shower/ “decontamination” procedure, so it didn’t take me all the way down.

June 5, 2026: took me all the way out. Brother came to visit. He had peanut butter with his breakfast, but fully showered, brushed teeth, clean clothes, etc and didn’t come over to my house until about 4pm. He picked up meds from Genoa. So again, in the little vestibule where they have a candy dish. He hugged me on arrival, we sat down to chat, and I got the itchy scalp. I sent him home right away, set about cleaning, etc, got in the shower, the whole deal… No dice. I was fucked.

June 15, 2026: Got in Mom’s car to go see the Allergist-Immunologist. Reaction started as we drove away and continued to escalate throughout the day (Doc was 20min away, then we had blood labs and an Rx to pick up, so I was essentially in and out of the car for several hours). Mom doesn’t eat in the car, keeps it very clean, etc. Had it professionally cleaned after the incident – No wrapper or peanuts found. No idea how a peanut could have gotten in except that a grandchild rode in the car the weekend before my appt. (Side theory: I have a new trigger that makes the same crazy reaction as peanuts)

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I am in crisis. I am afraid to leave my house or let anyone inside (which is bad because I’m so unwell I need to be looked after). My short term goal is to control the reactions so I can recover enough to think straight. My baseline is so profoundly low, it is hard to tell if I have been re-exposed or not.

I am following up with the Allergist-Immunologist (who does not seem to be willing or able to treat me for this) and my Integrative MD (who has been treating for presumed MCAS but I think he is out of ideas on this). Integrative MD offered to give me a compounded Ketotifen Rx, but I am hesitant to throw anything else into the mix, because I really have no idea if this is MCAS or not!
My family is looking for leads for other allergists / doctors who might be equipped to deal with this, but that is probably going to be out of state, which is a huge logistic and financial difficulty. I am in CT, USA.

DO YOU THINK THIS SOUNDS LIKE MCAS OR NOT?
DOES ANYONE HAVE A SIMILAR REACTION TO PEANUTS OR ANYTHING ELSE?

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u/WorriedAboutU7601937 — 3 days ago