Anyone else have histamine intolerance or MCAS

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I have no major allergies except for ragweed pollen, yet in the past two years I've had two instances of a brief (less than 2 hours) but extreme illness about 2 hours after dinner.

The first time was almost two years ago after eating ravioli with tomato sauce and parmesan cheese. I remember have intestinal cramps and running to the toilet about 90 minutes after eating. While on the toilet I first noticed an itchy/burning sensation in the palms of my hands. It's similar to the sensation of running your hands under very warm water while they are still numb from being out in the cold. After the itchy hands I started itching other places. There was not any severe rash, but I noticed my skin felt more puffy than usual and had a slightly numb-to-the touch feeling along with the itching. After this I got nauseas and started vomiting and just started feeling more and more awful with each passing minute. It all escalated over a period of 20 minutes, then faded away at about the same rate as it came on, with just a lingering itch and slightly unsettle stomach lingering into the night.

That time I told my doctor and he decided it was some kind of food poisoning, but it didn't make a ton of sense as my wife didn't get ill. The extremely short duration was also odd.

Now fast forward to this year. My wife got COVID at work around the second week of November and I caught it from her and started having symptoms around Thanksgiving. I had both vaccine shots in the spring, but still had a mild case. I mostly just had cold symptoms with an occasional low fever. The weird thing is I noticed my stomach acting up even before I got the characteristic sore throat. I just noticed I couldn't eat as big of a meal and I felt nauseated for a few hours after eating certain things. This nausea thing has lingered even after other symptoms went away. I also have alternating constipation and diarrhea ever since.

Now the most frightening thing happened just over a week ago. My cold and flu symptoms were already long gone, but I was constipated. I ate a meal of rotisserie chicken, rice, and green beans. About 2.5 hours later I started having cramps and ran to the bathroom. It was similar to the event two years ago, but it got even worse. After vomiting I started getting extremely lightheaded and having a weird sensation of fullness in my ears. Also this horrible feeling I can't even fully describe. I don't remember having trouble breathing, but I was just dripping in cold sweat and my blood pressure must have been extremely low. It was just that feeling that something horrible was happening.

I remember thinking I should get off the toilet and go lay down, but being hesitant because I didn't have a chance to wipe or clean up. The next thing I know I'm waking up on the ground. My wife heard me fall and ran to the bathroom but I had stupidly locked the door. I remember being unable to even stand because I could hardly feel my legs. I just crawled over to the door. I think I probably reached up to unlock the door, but all I remember is waking up again feeling my wife trying to push the door open against my weight. So I passed out twice. My wife was yelling at me to stay down. She could tell that I was passing out whenever I tried to stand up. She asked if she should call 911, but I told her to wait. In hindsight I probably should have just told her to call the ambulance, but of course I was hesitant about hospital charges given being in the US. Thankfully I recovered at this point. I think staying on the ground instead of upright helped my blood pressure stabilize. I asked for allergy medicine and my wife gave me some benadryl. It all subsided over the next half hour and I was finally able to get to my bed. I was so tired I immediately fell asleep.

Anyways, after reading all over the internet the next day I discovered that I had experienced anaphylactic shock, and that it can be fatal. I have no history of extreme allergic reactions so I was clueless about this. I don't remember my throat closing or having difficulty breathing, just the extreme dizziness and awful feeling from what must have been very low blood pressure. I got an appointment with my doctor (which I had yesterday) and this time he agreed it was some kind of allergic reaction and that I should call 911 if I ever feel like I'm going to pass out.

Reading more on the internet it seems to me like the only real good explanation if it isn't an allergic reaction is that I have either severe histamine intolerance or some kind of mast cell disease, either systemic mastocytosis or mast cell activation syndrome (MCAS). It's also intriguing to me that some researchers believe these types of disorders can lead to chronic fatigue and treatment resistant depression. I have been dealing with fatigue and depression for OVER 25 YEARS even though I only recently had allergic symptoms.

Of course it's really hard to know anything for sure. I also don't really know how to approach doctors. I try to just describe the symptoms instead of throwing terminology around so they don't think I'm dead-set on self-diagnosing... but at the same most doctors just don't even know about any of these things. I did get a referral to an allergist, but it's almost 40 days out unless there's a cancellation and they can push it up.

The reason I'm sharing here is I've heard there is often a link between these problems and so-called "leaky gut" that is prevalent for people on the autism spectrum. It's frustrating as there's no simple way to diagnose any of this other than diets that force me to eliminate almost everything I like. Feels almost impossible for someone who's already a picky eater to give up hundreds of foods. I'm just hoping there is some other way to treat this.

Just wondering if anyone here is in the same boat as me.

My colleague spoke about this exact problem recently. He experienced worrying side effects while taking increasing antihistamine doses. One thing that worked for him was that there are at least two distinct main antihistamine drugs. By alternating doses of those, he found he could limit tolerance build-up.

It's been a rough season (southern hemisphere here). If you already have a tolerance build up you'll need an opportunity to reduce and reset that.

I don't have much in the way of normal allergy symptoms. I don't even have that many normal allergies. I don't normally take antihistamines. The problem seems to originate in my intestine. Symptoms always start with an upset stomach. I might be diamine oxidase deficient. Lacking in the enzyme that breaks down intestinal histamine.

I think I will move this to in-depth adult life discussion. Nobody seems to be interested here.

I’ve only come across one person with something similar, in my case it wasn’t the reason for his presentation. He was taking both Fexofenadine 360mg and Ranitidine 450mg daily so he was on both H1 and H2 blockers. He said he had been on these for some time and it was the only way he could live normally. Anyhow he had no issues during surgery with us and continued to self administer these high doses of antihistamines during his inpatient stay.

I don't know if I had any MCAS/histamine intolerance before catching Covid, but I definitely have it now, and it's one of the most common Long Haul symptoms.

I'm not sure exactly how to describe mine, but I do get really bad itchy hives all over my hands, with it spreading further in extreme cases. It's very similar to the reactions I get if I eat gluten (which started for me in...2014 I think?)

For a while I was pretty strict on my diet, but after an attempt to try switching to a less expensive anti-histamine, I discovered that I am INCREDIBLY allergic to Benadryl...and ever since then, my MCAS issues have been a lot easier to deal with (but stomach issues are a bit worse now). Maybe I just needed a big shock to my system??

Now, I'm usually okay witch splurging a bit on high-histamine foods, but if I start to notice itching, or just a general feeling of "flare up", I'll take an Allegra.

I had tried three different types of antihystimenes when I was in my 20's and each one I ad to stop taking due to various reactions to them. The first made my whole lower body numb and paralized so I had to stop taking them. The second did something which I dont remember now, but I had to stop taking them as well. The third stopped my water works from working. My doctor back then gave up as there were only three types available in those days.

My Mum and I often find we can't take certain things. Not sure why. We can't even have dentists injections due to either the adrenaline or something else in them that we react to, and it is bad reactions where I am figting to keep breathing, and my Mum went into fits and it took her a year to recover. She became very withdrawn for a year. Yet try convincing doctors it happened. Dentists know it happened. The dentist we used to have left the practice over it because she was so frightened over it. Why don't doctors accept these things happen? That some people are different and their bodies react in different ways and may be far more sensitive to medical things?

Have you ever triad a diamine oxidase supplement before meals. I'm thinking it might work better than a general antihistamine as it helps break down histamine in the small intestine before it gets out of hand. The only frustrating thing is the price tag.

I don't think I am sensitive to gluten. Bread doesn't trigger symptoms so much as things like aged cheese, beer, or meat that has sat out for a bit too long after cooking. These things all have the potential to cause stomach cramps, or possibly worse. I am afraid of rotisserie chicken now. It would probably be okay if I picked it up fresh of the spit, but when they set it out and it sets on the warming bench for an hour it obviously collects histamine, even though not visibly spoiled at all. Foods that are high histamine combined with other foods that are diamine oxide inhibiting (coffee, tea, chocolate) seem to be related to the case reactions. Histamine foods alone can cause cramping, but it seems like the combination with other things consumed earlier in the day is what leads to the serious/scary anaphylactoid symptoms like itchy swollen skin, low blood pressure, vomiting, or blacking out.

Yeah, no, no way can I afford $60 for 60 pills.
I was taking quercetin for a while (I still have some left)...for a little while it seemed like it was helping, but I'm not so sure anymore.
I was drinking some nettle tea too, but I can't find it in stores anywhere (or growing wild), and it's a lot more expensive online. Again, not sure if it helped or not, but I kind of grew a taste for the stuff.
Maybe I could get some seeds and plant them in the back yard =)


I just get the itching/swelling, really...maybe some irritability? It's hard to tell what is caused by what.
I only really get stomach cramps when I eat too much food that's difficult to digest...I know beef and popcorn will do it to me.