Mast cell activation syndrome is not what it seems

[frozenborderline]

Many doctors present mast cell activation syndrome as if it's a syndrome where someone mast cells are on high alert for noreason, or for an idiopathic and possibly genetic reason, and so they get triggered by totally harmless things and cause issues.
In my opinion. Nobody knows enough about mcas to tell anyone why their mast cells are reacting, and what they are reacting to. Not even the best doctors. While some "mast cell activation syndrome triggers" are harmless, some arent. And since we are exposed to thousands of harmful chemicals in this day and age our response should be to dig deeper and not assume that the mast cell activation is the main problem rather than a symptom of a deeper problem. Sure, your body reacts to some harmless stuff like pollen, but it's probably so inflamed and unregulated bc of something worse... and the pollen and relatively harmless foods are the collateral damage when its primed by something very nasty. So imo this requires a lot more study. One could also view mcas as one part of a broader innate immune system response to toxins when the adaptive immune system fails, possibly due to low immunoglobulins

 

[nerd]

I agree. It's quite unclear.

Though, you could speculate about the reasons.

Dnmt3a restrains mast cell inflammatory responses (10.1073/pnas.1616420114)

 

[rel8ted]

Most docs here just deny it exists. My mcas doc actually left his partnership & started a new practice for this reason. Anytime he has sent me for labs, the hospital lab has been unable to complete them correctly, resulting in a bill for results never received. Trying to get treatment is useless.

 

[nerd]

Most docs here just deny it exists. My mcas doc actually left his partnership & started a new practice for this reason. Anytime he has sent me for labs, the hospital lab has been unable to complete them correctly, resulting in a bill for results never received. Trying to get treatment is useless.

What about mast cell inhibitors? Some antihistamines also exhibit mast cell inhibitory function.

 

[Learner1]

One could also view mcas as one part of a broader innate immune system response to toxins when the adaptive immune system fails, possibly due to low immunoglobulins

Here is the latest consensus by experts on what MCAS is and why it's important to treat it.

https://www.degruyter.com/document/doi/10.1515/dx-2020-0005/html

Though some of us have low Immunoglobulins, most do not. For many, it does seem to be related to a disrupted microbiome, commonly from antibiotic use and/or oxalates and/or mycotoxins.

Most docs here just deny it exists. My mcas doc actually left his partnership & started a new practice for this reason. Anytime he has sent me for labs, the hospital lab has been unable to complete them correctly, resulting in a bill for results never received. Trying to get treatment is useless.

Be persistent. You should not be billed for tests that aren't run or arent run properly. In the US, I've had Quest Diagnostics run MCAS labs, with some prodding - done of the tests are "sendouts."

There are many treatments, see attached.

What about mast cell inhibitors? Some antihistamines also exhibit mast cell inhibitory function.

There are many. See attached.

Quercetin and Neuroprotek are available without prescription, along with H1 and H2 antihistamines. Cromolyn sodium is also useful, but needs a prescription. And Gleevec/imatinib.

 

[nerd]

There are many. See attached.

Quercetin and Neuroprotek are available without prescription, along with H1 and H2 antihistamines. Cromolyn sodium is also useful, but needs a prescription. And Gleevec/imatinib.

I wasn't asking for myself. I'm just interested if @rel8ted has made any experiences with them, since he/she mentions the lack of therapeutic options.

 

[Pyrrhus]

Though, you could speculate about the reasons.

From what I've read, MCAS appears to be a type of dysautonomia.

Generally speaking, mast cells can be degranulated by either biological threats OR by the autonomic nervous system. The autonomic nervous system can also increase the sensitivity of mast cells, without degranulation.

The classic example of mast cell degranulation due to dysautonomia is urticaria, commonly known as hives. In this case, dysfunction of the autonomic nervous system leads to degranulation of mast cells throughout the skin, despite the absence of a biological threat in the skin. (although there may be a biological threat elsewhere in the body)

Of course, if the dysautonomia is causing mast cells to degranulate, but you are taking mast cell stabilizing medication, the dysautonomia will fail to degranulate the mast cells.

If you're interested in reading more about this, here are two good papers:

The parasympathetic nervous system as a regulator of mast cell function (Forsythe, 2015)
https://pubmed.ncbi.nlm.nih.gov/25388249/

Mast cell–nerve axis with a focus on the human gut (Buhner and Schemann, 2012)
https://www.sciencedirect.com/science/article/pii/S092544391100130X

EDIT:
And here's an earlier review paper:

Significance of Conversation between Mast Cells and Nerves (van der Kleij and Bienenstock, 2005)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877069/

EDIT:
And here's a paper that found that MCAS and POTS can appear together:
https://forums.phoenixrising.me/thr...s-not-what-it-seems.83393/page-6#post-2375944

Since it is common to find one type of dysautonomia alongside other types of dysautonomia, it should not be surprising that MCAS might appear alongside other types of dysautonomia.

Here's a new-ish paper that suggests that MCAS and POTS sometimes occur together:

Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association

 

[Learner1]

From what I've read, MCAS appears to be a type of dysautonomia.

Generally speaking, mast cells can be degranulated by either biological threats OR by the autonomic nervous system. The autonomic nervous system can also increase the sensitivity of mast cells, without degranulation.

The classic example of mast cell degranulation due to dysautonomia is urticaria, commonly known as hives. In this case, dysfunction of the autonomic nervous system leads to degranulation of mast cells throughout the skin, despite the absence of a biological threat in the skin. (although there may be a biological threat elsewhere in the body)

Of course, if the dysautonomia is causing mast cells to degranulate, but you are taking mast cell stabilizing medication, the dysautonomia will fail to degranulate the mast cells.

If you're interested in reading more about this, here are two good papers:

The parasympathetic nervous system as a regulator of mast cell function
https://pubmed.ncbi.nlm.nih.gov/25388249/

Mast cell–nerve axis with a focus on the human gut
https://www.sciencedirect.com/science/article/pii/S092544391100130X

Some people have KIT gene mutations. Others have gut microbiome disruption, mycotoxins, oxalates, iron overload, histamine problems, problems with EMFs, porphyria, etc. that cause mast cells to degranulate. While The nervous system is obviously involved, I'm not so sure that dysautonomia is the root of it for most people, As there are many people without dysautonomia who have it.

 

[rel8ted]

@Learner1 i get that it shouldn’t work that way, but I just got a bill for my part of roughly $5900 worth of labs that were run back in December. One of those was no good. The doc took the time to go over the protocol with them, but they couldn’t bother to freeze the specimen immediately, likely bc they were too busy eating Taco Bell in the phlebotomy room (not kidding) and forgot that important detail. He is the only doc that seems to understand what to do within an hour’s drive, but we have to deal with stuff like this. It’s just frustrating & there isn’t another place to get the labs done in a reasonable distance.

 

[CedarHome]

Quercetin and Neuroprotek are available without prescription, along with H1 and H2 antihistamines. Cromolyn sodium is also useful, but needs a prescription. And Gleevec/imatinib.

Neuroprotek is so expensive! I tried it for awhile but never noticed a difference.

But that was a while ago and I've really cleaned up my diet so maybe I might notice if I tried it now.

Quercetin is less expensive so I like to imagine that it works

 

[kangaSue]

Generally speaking, mast cells can be degranulated by either biological threats OR by the autonomic nervous system. The autonomic nervous system can also increase the sensitivity of mast cells, without degranulation.

I think you can add gut bacterial infection to biological threats

https://www.gutmicrobiotaforhealth....s-with-functional-gastrointestinal-disorders/
Does functional abdominal pain have an organic explanation? Gut-localized immune responses offer new clues for patients with functional gastrointestinal disorders

 

[Learner1]

@Learner1 i get that it shouldn’t work that way, but I just got a bill for my part of roughly $5900 worth of labs that were run back in December. One of those was no good. The doc took the time to go over the protocol with them, but they couldn’t bother to freeze the specimen immediately, likely bc they were too busy eating Taco Bell in the phlebotomy room (not kidding) and forgot that important detail. He is the only doc that seems to understand what to do within an hour’s drive, but we have to deal with stuff like this. It’s just frustrating & there isn’t another place to get the labs done in a reasonable distance.

Very sorry it happened to you. I deal with that stuff, too. But, if they screw up a test, I call them on it and get it rerun, even though it's a hassle. Getting the right data to make decisions on is critical for success.

Was it PGD2?

 

[rel8ted]

Very sorry it happened to you. I deal with that stuff, too. But, if they screw up a test, I call them on it and get it rerun, even though it's a hassle. Getting the right data to make decisions on is critical for success.

Was it PGD2?

I don’t remember which one it was. Not well enough to make the hour drive one way to have it redone at this point.

 

[MCASMike]

Here's an update for my "MCAS journey" (since late October, 2020): I'm still taking aspirin, about 600 mg a day spread out over time, a loratidine pill (10 mg) in the morning and one before bed, ketotifen eye drops for the eye problems (which are much better now and I rarely use the drops any more), cromolyn nasal spray before bed, vitamin D3 (around 1000 mg/day), luteolin powder, rutin powder, and one meal with celery seed powder and Mexican oregano (rich sources of luteolin), Hongo Cura gel or zinc oxide cream seem to work well with the rash type problems. And I take various other supplements that I would take anyway (beta carotene, calcium, etc.). Early next year I plan on another DEXA scan to see how my osteoporosis is, after following this MCAS protocol (it's gotten progressively a little better since around 2003, when I first had the scan done, I'm guessing because I started taking calcium supplements at the time). Here's the big thing, at least for me: my body is still very sensitive. For example, I can get a very bad night's sleep if it's just a bit warmer than usual. I may ask my doctor for a prescription for oral (tablet) ketotifen at some point, since the eye drops work well.

 

[Dufresne]

The worst thing for my MCAS is going after cellular Lyme and co in the brain. Cellular immunity in the brain hits my basal ganglia very hard; it takes me from a mild case to fairly severe in a couple weeks, this then lasts for about two months. It's the one thing that really ramps up my sensitivities. As such I believe it's limbic dysfunction that often leads to MCAS, but I guess one could regard this as dysautonomia.

 

[Learner1]

Here's an update for my "MCAS journey" (since late October, 2020): I'm still taking aspirin, about 600 mg a day spread out over time, a loratidine pill (10 mg) in the morning and one before bed, ketotifen eye drops for the eye problems (which are much better now and I rarely use the drops any more), cromolyn nasal spray before bed, vitamin D3 (around 1000 mg/day), luteolin powder, rutin powder, and one meal with celery seed powder and Mexican oregano (rich sources of luteolin), Hongo Cura gel or zinc oxide cream seem to work well with the rash type problems. And I take various other supplements that I would take anyway (beta carotene, calcium, etc.). Early next year I plan on another DEXA scan to see how my osteoporosis is, after following this MCAS protocol (it's gotten progressively a little better since around 2003, when I first had the scan done, I'm guessing because I started taking calcium supplements at the time). Here's the big thing, at least for me: my body is still very sensitive. For example, I can get a very bad night's sleep if it's just a bit warmer than usual. I may ask my doctor for a prescription for oral (tablet) ketotifen at some point, since the eye drops work well.

If you're concern is osteoporosis, your vitamin D dose looks low (though it depends on how far from.the equator you live and your VDR SNPs) and you didn't mention vitamin K2.

Also, have you looked into oxalates which can bind minerals and contribute to osteoporosis?

Oral ketotifen must be compounded in the US. There's also oral cromolyn sodium.

 

[godlovesatrier]

Quercitin definitely works on my hay fever symptoms, for a very long time I couldn't tolerate it, over stimulation and/or stomach problems. But now all of a sudden I can, which is great really as it's helping a lot. I mainly take it to counter act the effects of pollen though.

 

[MCASMike]

Last night it was colder than usual and I woke up after sleeping a couple hours with a tingle in the throat and a dry cough that kept waking me up. Eventually, I thought to sleep with a surgical mask on and that helped, perhaps due to more humidity. But this is what I have come to expect, meaning the symptoms can be generated upon the most "minor" of stressors.

 

[MCASMike]

If you're concern is osteoporosis, your vitamin D dose looks low (though it depends on how far from.the equator you live and your VDR SNPs) and you didn't mention vitamin K2.

Also, have you looked into oxalates which can bind minerals and contribute to osteoporosis?

Oral ketotifen must be compounded in the US. There's also oral cromolyn sodium.

Yes, I plan on getting a prescription for ketotifen and then I'll have to go to a compounding pharmacy. I think the oral cromolyn is a lot more expensive, but if not, sure, I'd like to try that as well. I do avoid oxylate-rich foods, but I was eating quite a bit of them before the first DEXA scan showed "marked osteoporosis." And from what I can tell, my diet should have enough vitamin K (and there's some extra D in the diet, in addition to the supplement). Thanks.

 

[Learner1]

Yes, I plan on getting a prescription for ketotifen and then I'll have to go to a compounding pharmacy. I think the oral cromolyn is a lot more expensive, but if not, sure, I'd like to try that as well. I do avoid oxylate-rich foods, but I was eating quite a bit of them before the first DEXA scan showed "marked osteoporosis." And from what I can tell, my diet should have enough vitamin K (and there's some extra D in the diet, in addition to the supplement). Thanks.

Just because you stop eating high oxalate foods doesn't mean an oxalate problem goes away. One must bind the minerals going in with citrate, ensure B6 levels are sufficient, have adequate D3 and K2, and be on a low oxalate diet to for a lengthy period of time, possibly 2 to 10 years, or forever if one has the genes for primary oxaluria.