hb8847

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Hi all, I'm wondering if anyone has any info on what are the possible causes of MCAS? And if someone's looking to try to address the root cause of their MCAS what areas should they look into, and in what order of importance?

I'm also interested in whether anyone here has managed to figure out what's caused their MCAS and actually had some success in addressing it? And to what extent have you recovered, has it enabled you to come off of any Mast Cell mediators?

My situation: I'm a 32 year old guy and was diagnosed formally with MCAS in December 2020 having suffered with CFS and severe food intolerances for the past 6 years or so.

Prior to the MCAS diagnosis I had been diagnosed with gut bacterial dysbiosis and SIBO, and had been working with my doctor to try and fix this over a few years, but I was having a really hard time taking literally any medications or making any dietary adjustments at all. Everything I was putting in my mouth was triggering a really bad reaction and he referred me to an immunologist called Dr Seneviratne, thinking I might have MCAS.

Long story short, he sent me for a bunch of tests in London, and following this formally diagnosed me with MCAS. I also had the genetic test (C kit) which came back negative, and he's ruled out Mastocystis.

I had been under the assumption the gut dysbiosis was the cause of the MCAS; I was aware they were linked, but I'd also read a bit about mould being a frequent trigger so I decided to get my mycotoxin levels tested too. These also came back very high.

In the meantime my MCAS Doctor's approach seems to be to first try to calm down my MCAS reactions with Mast Cell mediators (so far I've only been prescribed antihistamines and Vitamin D), presumably with the aim of adding a new medication every 6-8 weeks or so, which I understand to be the standard course of action.

Obviously I'm hoping one of these mediators will start working, at which point I'm thinking my next goal will be to try and fix whatever is the root cause of my MCAS. Right now I'm assuming it's either the mould or the gut dysbiosis, or a combination of the two, and my aim then would be to find a mould specialist to see if I could rid my body of that. Does this sound like a viable plan? Has anyone managed to achieve this and reversed their MCAS problem with adequate gut or mould treatment?

My experience with the mould diagnosis has also got me wondering if there's anything else I'm missing. For example I've seen Lyme disease mentioned a few times on this page - I've not been diagnosed with Lyme but perhaps that might not be a bad idea given the link with MCAS. Does anyone have experience with this?

Any info that anyone's got in general would be much appreciated, thanks in advance!
 

MCASMike

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Well, based upon my experience I'd suggest wearing a mask all the time (other than eating, brushing your teeth, and other obvious things) or get a good humidifier, to see if low humidity is a major problem. Do you you have runny nose, post nasal drip, dry cough, dry throat, and dry eyes that can start to tear up like crazy for no apparent reason? If not, then humidity may not be the issue. Also, the nicotinic acid form of niacin seems to help a lot for some of my other symptoms (weak legs, temperature intolerances, needing a lot of sleep, and "brain fog").
 

hb8847

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Thanks Mike, what might be the link with humidity? Is the idea there that it encourages mould growth?

"Do you you have runny nose, post nasal drip, dry cough, dry throat, and dry eyes that can start to tear up like crazy for no apparent reason?"

No, except I do get very watering eyes, but I feel this is one of my standard MCAS reactions that comes from food, and this hasn't always been an issue for me.

Thanks for the niacin suggestion but it hasn't helped me.
 

MCASMike

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Forgot to mention, luteolin definitely seemed to help, but if you decide to try it, research the company because there's at least one (that was on a major online retailer that begins with the letter A) that was apparently fake.
 
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Well I had mast cell issues since I was a young child. Me and my siblings all had eczema and some of us had asthma. Seasonal allergies too I think. My siblings eczema was grown out of while mine stayed and I went through flares. My exercise induced asthma stayed. My dad gets bad seasonal allergies and gets hives regularely ish? I don't know. My sister's just developed regular hives and has sun issues. I've always had sun issues. So, it's genetic, for us, and for me was then triggered into a full blown disease. My doctor said that some people have a genetic component, and I suspect there's some genetic component for many. People with ehlers danlos syndrome, a genetic disease, get mcas a lot and also dysautonomia. We also have ehlers danlos syndrome type 3 or the precurser to it, joint hypermobility, in the family. I got the full disease of the genetic eds type 3 after getting sick with ME, mcas, and my other conditions.

There's a lot not yet known about mcas. It seems like the triggers can be many, but infections, toxins, autoimmunity, other diseases, physical trauma, possibly emotional trauma, are some.

A couple years to a year before my virus I had worse and longer lasting itch attacks than I can remember. I took Benadryl several times a day for a couple's months. It stopped I think but after my ME onset, I had a bad eczema flare and slowly over time had more and more mcas symptoms. My ME onset was a virus, then possibly a second infection a year a half later that I got much worse from, or got worse from mold I moved to. I had autoimmunity after my viral onset. I also had 3 challenges to my health before my viral onset. I moved to an apartment with toxic mold several months before (different than where I moved later on), I had a procedure done, and I had a change in my GI from an adverse birth control response. But my viral onset was acute. I have had so many exacerbating events and life conditions in the eight years since.

I would say to investigate mold if you remember living around it, especially if shortly before your ME onset or any time since then, but to maybe wait on checking for it if you can't remember any. I'd rule other stuff out first in that case. Mold testing is expensive if you're looking for mycotoxins in the urine. That's the test to see whether you have toxins from mold inside you right now.

For Lyme I'd suggest looking at some of the most common symptoms and seeing if you have them. You could also do some digging to see if you've lived in places it's known to be a little more common. Those things alone won't tell you for sure anything but maybe there'd be avenues that fit your symptoms much more, that you'd wanna look into first. Lyme and mold are catch alls for some doctors, and although these are serious issues, and some are greatly affected, some can have these problems but be only somewhat affected and it's not causing their most trouble symptoms or their ME or mcas, or not have the issues at all.

Many including myself would have been better served by other treatments focused on other things. Many feel like they got nowhere treating mold or lyme. But same could be said for other treatments for ME. And some need treatment for those things and do get much better from them or have some things improve. So, I'd say if these are issues for you it's worth it to treat them, but to be aware that there's so much else to investigate and not get sucked in to these catch alls if they don't seem relevent or without doing other investigation first. I got worse from the stuff meant to treat me for mold toxicity originally (which I did have). The first treatment that I've had improvements from for anything was iv ozone and uvb treatments. And I've had improvements from other treatments since. Have you see this? Testing and treatment

I've been on fexofenadine for a year now and it helps. This year though my lung symptoms that became triggered by a lot of things are better, less heart palpitations, less strong responses to some triggers, but I did develop angioedema last year or this year. Things that might've helped this year: a couple treatments of ivig I did in January, another treatment I did in December, getting more zinc (I'm not sure this is relevent though), treating parasites more, having less inflammation from endometriosis since that's reduced a lot with treatment, or being on fexofenadine for a while.

As I sit here though I'm itching my rashes that have come up again and the seasonal change is affecting this somewhat. I'm hopeful that the ivig treatment I'm going to do regularely for autoimmunity will help or totally cure my mcas, as it does for some people. Treating or managing autoimmunity, infections, and eds connective tissue problems and instability, are my overall treatment goals. I'm hopeful that mcas will fade through something in that process. Also I'm going to take supplements and herbs that are mast cell stabilizing, or inhibitors of histamine, prostaglandin, or leukotrions, as I experiment more and as I can take more herbs (many I can't due to oxalate issues or mast cell issues). Boswellia extract called lox-5 seems like it might've been helping me before I ran out.
 
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hb8847

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Thanks for this PisForPerseverence, that's all very interesting.

I have actually had the Urine Mycotoxin test you suggested, this came back showing very elevated levels so perhaps that should be my first port of call.

Overall though I'm feeling fairly bleak about the MCAS diagnosis now. Initially I was relieved because I had spent so long not knowing what was the cause of my CFS, well now I do but it seems like a very difficult illness to treat from what I'm understanding.
 

hb8847

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MCASMike

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Thanks for this PisForPerseverence, that's all very interesting.

I have actually had the Urine Mycotoxin test you suggested, this came back showing very elevated levels so perhaps that should be my first port of call.

Overall though I'm feeling fairly bleak about the MCAS diagnosis now. Initially I was relieved because I had spent so long not knowing what was the cause of my CFS, well now I do but it seems like a very difficult illness to treat from what I'm understanding.
I was in bad shape circa October, 2020, with terrible sleep, runny nose all day, couldn't eat toast because I'd choke on it (even a small piece with jelly on it), etc. The H1 second generation anti-histamines were my first MCAS endeavor (Antivert for a week, then the loratidine arrived), and I felt some major relief within a day or two. Then I went with low dose aspirin (a "baby" aspiring with each meal and at the end of the day, so 5 total), which helped too, then luteolin, which again seemed to help a bit more. I tried some other things too, which may be helping (once you are taking a lot of things it's impossible to tell, unless perhaps you do rigorous testing very frequently). Now I'm wearing the mask/sleeping under a sheet and taking nicotinic acid, which again seem to have helped a lot. I think I've had every MCAS symptom at one point or another in my life (not sure if I would be diagnosed with asthma but I have had severe breathing issues), and I think the key is to just keep trying different things/combinations. There may even be a different disorder for you, just as people had MCAS 20 years ago but the doctors would not have been able to diagnose it even if they would have wanted to!

Also, if nicotinic acid didn't work by itself, remember that those who advocate this for MCAS say there is a combination, such as this daily protocol:

"Nicotinic acid aka Niacin (most important and not nicotinamide or other forms) — 100mg
Vitamin C aka Ascorbic Acid — 1500mg
Vitamin D — 3000iu
Zinc — 15mg
Selenium — 50mcg
Quercetin — 500mg"
 
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hb8847

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Thanks Mike

Nicotinic acid gave me horrendous flushing whenever I took it, I really didn't react well to it at all and it didn't seem to quell my MCAS symptoms unfortunately.

Vitamin D has done something for me, it seems to help my tolerance of medications, but I can't take too much as it actually triggers my MCAS. I wouldn't be able to tolerate anywhere near 3000iu and I've actually had to completely stop taking it recently.

The others I've tried, except for Quercetin which I've heard mentioned for MCAS in the past, I may give that a go.

I know MCAS manifests differently in different people - mine seems very much to do with food rather than smells or anything else, it seems the trigger is only whenever I ingest anything. And the symptoms are less skin related and more things like chronic fatigue, aching joins, and cognitive issues. Perhaps this is why I don't respond the same way to these supplements as you.
 

MCASMike

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Thanks Mike

Nicotinic acid gave me horrendous flushing whenever I took it, I really didn't react well to it at all and it didn't seem to quell my MCAS symptoms unfortunately.

Vitamin D has done something for me, it seems to help my tolerance of medications, but I can't take too much as it actually triggers my MCAS. I wouldn't be able to tolerate anywhere near 3000iu and I've actually had to completely stop taking it recently.

The others I've tried, except for Quercetin which I've heard mentioned for MCAS in the past, I may give that a go.

I know MCAS manifests differently in different people - mine seems very much to do with food rather than smells or anything else, it seems the trigger is only whenever I ingest anything. And the symptoms are less skin related and more things like chronic fatigue, aching joins, and cognitive issues. Perhaps this is why I don't respond the same way to these supplements as you.
Have you been tested for low stomach acid production? As to the items listed, from what I understand you need to take them at the same time. If you took one for a few months, then stopped, and a week later started one of the others for a few weeks, then stopped, etc., that doesn't mean it won't work for you if you try them all at once. I take rutin, which is very similar to quercetin, rather than quercetin, but otherwise I'm taking all of the ones listed in this new idea about how to deal with MCAS. I'd like to know what the underlying cause is, if there is one, but I'm doing what I can now for the symptoms, and I don't envision myself spending a huge amount of time trying to get at the underlying cause, because I don't have the knowledge, resources, etc., while others do (so I'll wait to see what new research/findings are published).
 

hb8847

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Have you been tested for low stomach acid production?
I haven't been formally tested but I know I have gastro issues and gut dysbiosis so it wouldn't surprise me.

As to the items listed, from what I understand you need to take them at the same time. If you took one for a few months, then stopped, and a week later started one of the others for a few weeks, then stopped, etc., that doesn't mean it won't work for you if you try them all at once.
I appreciate the advice but to be honest right now I'm not really looking for supplement recommendations, I'm just trying to follow the doctor's orders - he's supposedly one of the leading doctors dealing with MCAS in the UK and I imagine if there was a supplement that had clinically shown to be beneficial he would have me taking it. Right now I'm just working my was through the MCAS mediators which I understand is standard practice.
 
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MCASMike

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I haven't been formally tested but I know I have gastro issues and gut dysbiosis so it wouldn't surprise me.



I appreciate the advice but to be honest right now I'm not looking for people to give me supplement recommendations and I'm just trying to follow the doctor's orders - he's supposedly one of the leading doctors dealing with MCAS in the UK and I imagine if there was a supplement that had clinically shown to be beneficial he would have me taking it. Right now I'm just working my was through the MCAS mediators which I understand is standard practice.

As for taking them all together, that may work for you but that doesn't mean it'll work for everyone, not least because they symptoms I exhibit seem to be very different from yours. For me t's not a case of trying some of them together, I literally cannot handle some at all regardless if I take them on their own or in unison, some have sent me into anaphylaxis so with respect it's not a risk I'm willing to take unless clinically advised. Literally the only one you mentioned I haven't tried is the quercetin and I may bring that up with him in our next appointment.
You began this post by asking if any of us had "some success in addressing it," so it would be rather odd for you to get an answer of "yes," but then the person didn't tell you what they did to achieve that success, right? In fact, if I asked that question and the person just said "yes," but didn't provide any details, I would wonder about whether that person was trying to be a troll. Wouldn't most people?
 
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hb8847

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You began this post by asking if any of us had "some success in addressing it," so it would be rather odd for you to get an answer of "yes," but then the person didn't tell you what they did to achieve that success, right? In fact, if I asked that question and the person just said "yes," but didn't provide any details, I would wonder about whether that person was trying to be a troll. Wouldn't most people?
With respect Mike there's a difference between saying "Yes I've had some success in treating it by doing X, Y and Z" and saying the following, which is basically just a list of recommendations:

"Well, based upon my experience I'd suggest wearing a mask all the time (other than eating, brushing your teeth, and other obvious things) or get a good humidifier, to see if low humidity is a major problem. Do you you have runny nose, post nasal drip, dry cough, dry throat, and dry eyes that can start to tear up like crazy for no apparent reason? If not, then humidity may not be the issue. Also, the nicotinic acid form of niacin seems to help a lot for some of my other symptoms (weak legs, temperature intolerances, needing a lot of sleep, and "brain fog")"

I get you're trying to help but that's not really got much to do with what I'd asked, which was mainly about the causes of MCAS and whether anyone had had luck in ascertaining theirs, as well as what level of success they'd had in treating their condition. If I'd said "please can anyone give me supplement recommendations" then fine but I didn't. Also many of these suggestions seem very specific to your case - people with MCAS exhibit very different reactions and what works for you could be very different to what works for anyone else.

That said, I'm not trying to get into an argument and I appreciate your input.
 
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MCASMike

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With respect Mike there's a difference between saying "Yes I've had some success in treating it by doing X, Y and Z" and saying the following, which is basically just a list of recommendations:

"Well, based upon my experience I'd suggest wearing a mask all the time (other than eating, brushing your teeth, and other obvious things) or get a good humidifier, to see if low humidity is a major problem. Do you you have runny nose, post nasal drip, dry cough, dry throat, and dry eyes that can start to tear up like crazy for no apparent reason? If not, then humidity may not be the issue. Also, the nicotinic acid form of niacin seems to help a lot for some of my other symptoms (weak legs, temperature intolerances, needing a lot of sleep, and "brain fog")"

I get you're trying to help but that's not really got much to do with what I'd asked, which was mainly about the causes of MCAS and whether anyone had had luck in ascertaining theirs, as well as what level of success they'd had in treating their condition. If I'd said "please can anyone give me supplement recommendations" then fine but I didn't. Also many of these suggestions seem very specific to your case - people with MCAS exhibit very different reactions and what works for you could be very different to what works for anyone else.

That said, I'm not trying to get into an argument and I appreciate your input.
So is it that I did not provide my "level of success?" And if raising humidity relieves all or most symptoms, then doesn't that narrow down the underlying causes (which it seems is what you are seeking)? At this point, I'll just let others decide what to make of your question, because I really don't understand what you are seeking. You could try luteolin, a humidifier or mask, or the supplement protocol that includes nicotinic acid, for starters. If you'd rather keep your MCAS symptoms than try any or all of these things, then I wish you luck, but I do hope this is of some use to others. My only unique contribution to this forum (I think) is the idea of raising the humidity, but I also found a scientific paper supporting this notion (and there may be others), so I am not claiming credit for discovering this, just mentioning how much wearing a basic mask has helped.