All the symptoms of MCAS but antihistamines don't work

[chronicallyill]

Hi all,

I have all the symptoms of mcas but no antihistamines work. Has anyone had this experience and if so, did you figure out the reason?

I have:

Runny nose (happens no matter what I eat)
Itchy nose, ears and throat
Itchy eyes
Random red areas that sometimes burn. They appear for about 20 minutes and then disappear. I have primarily gotten it on my face, knees and knuckle,

Allergy testing didn't really show anything. Anti histamines don't seem to work either.

 

[nerd]

First off, there's a difference between histamine intolerance, which is mostly genetic, and MCAS.

Histamine intolerance manifests as a deficiency or dysfunction of DAO or HMNT. HMNT requires methylation support though, this is how the ME pathophysiology can also affect it.

Unstable mast cells release more than just histamine. It's possible that histamine is released but the body can handle it while it can't handle the inflammatory cytokines.

Mast cell stabilizers can suppress mast cells from releasing histamine and cytokines. Ketotifen is one option. They take a long time to work though, a few weeks or so. If MCAS is only in the GIT, cromoglicin might be sufficient. beta-2 agonism is impeded by the ME pathophysiology, but beta-2 agonism stabilizes mast cells. Combined with the generally low catecholamine capacity in ME patients, this is one of the methods in which ME might contribute to MCAS.

NAC also helps me when I have allergic symptoms, but my symptoms differ from yours.

 

[Martin aka paused||M.E.]

Hi all,

I have all the symptoms of mcas but no antihistamines work. Has anyone had this experience and if so, did you figure out the reason?

I have:

Runny nose (happens no matter what I eat)
Itchy nose, ears and throat
Itchy eyes
Random red areas that sometimes burn. They appear for about 20 minutes and then disappear. I have primarily gotten it on my face, knees and knuckle,

Allergy testing didn't really show anything. Anti histamines don't seem to work either.

At the IACFS/ME they presented heparin in serum as a new and most reliable diagnostic marker for MCAD. They said that you can only find it in serum when you a) take it or b) have MCA

 

[Irat]

First off, there's a difference between histamine intolerance, which is mostly genetic, and MCAS.

Histamine intolerance manifests as a deficiency or dysfunction of DAO or HMNT. HMNT requires methylation support though, this is how the ME pathophysiology can also affect it.

Unstable mast cells release more than just histamine. It's possible that histamine is released but the body can handle it while it can't handle the inflammatory cytokines.

Mast cell stabilizers can suppress mast cells from releasing histamine and cytokines. Ketotifen is one option. They take a long time to work though, a few weeks or so. If MCAS is only in the GIT, cromoglicin might be sufficient. beta-2 agonism is impeded by the ME pathophysiology, but beta-2 agonism stabilizes mast cells. Combined with the generally low catecholamine capacity in ME patients, this is one of the methods in which ME might contribute to MCAS.

NAC also helps me when I have allergic symptoms, but my symptoms differ from yours.

i recommend Jasmin Page.so many useful Information in there.There are also lots of natural Mast Cell stabilizers you can try w.you find them on her page,Mabey you also need to do a Exclusion diet first.i have MCAS too and wish i could eat and treat it that way.
https://healinghistamine.com/
Natural Mast Cell Stabilizers are for example quercetin( lots in apples),green tea,resveratol,circuit,VIT c,luteolin,Sylmarin,and many more you can find listed here

https://hoffmancentre.com/natural-treatments-for-mcas/


There are so many options, medication should always be a last choice in my opinion....good luck

 

[Irat]

Quercetin, (quercetin and green tea extracts may inhibit the COMT enzyme. If you have a COMT ++ enzyme (slow function) on your 23andme, be careful when using these two supplements.)

• Found naturally in stinging nettle, grapefruits, onions, apples, black tea, leafy green vegetables and beans
• Downregulates the enzyme that converts the protein histidine to histamine—histidine decarboxylase
• Inhibits the release of histamine, prostaglandins and leukotrienes— three of the most common inflammatory mediators found in MCAS
• Decreases the production and release of inflammatory cytokines—the inflammatory mediators responsible for many of the symptoms of inflammation related to MCAS
• Often used as a primary therapy—has been shown to be more effective than the pharmaceutical Cromolyn
• Treats allergies, contact dermatitis, photosensitivity and inflammation
• The dihydrate form has the best bioavailability

Look at this one mabey.....but I always would start with diet first , you can find guidance on Jasmine page I posted above.

• Dr. Theoharides, a top mast cell researcher, has produced a product called NeuroProtek, which contains quercetin, luteolin and rutin. At least 8 capsules must be taken daily for maximum effect.

 

[nerd]

There are so many options, medication should always be a last choice in my opinion....good luck

Most of them don't reach necessary concentrations. Quercetin is a good example for a substance that has many theoretical mechanisms but it can't reach sufficient concentrations because it's eliminated and metabolized so quickly that not even an overdose of 10x would lead to an accumulation of in vivo concentrations. You can still estimate a low beneficial effect because of the many synergistic mechanisms but I don't think it's comparable to "real" mast cell stabilizers.

 

[Irat]

Most of them don't reach necessary concentrations. Quercetin is a good example for a substance that has many theoretical mechanisms but it can't reach sufficient concentrations because it's eliminated and metabolized so quickly that not even an overdose of 10x would lead to an accumulation of in vivo concentrations. You can still estimate a low beneficial effect because of the many synergistic mechanisms but I don't think it's comparable to "real" mast cell stabilizers.

I m sorry I have a different opinion,because I know ppl who cured their MCAS by diet and gut restoration ,stress managment alone (so did jasmin) plus zee 89 has only a bit of itching,and skin problems.that are no life threatening MCAS symptoms., I go into anaphalptic for example and have life threatening symptoms...but I know I could reach a stabilized state with diet,because I did that before.but unfortunately can t eat much anymore..,,


Dr, Theoraidis,like stated above does even use does supplements

 

[Krokus]

@zee89
Do you know what triggers your reaction?

 

[nerd]

I m sorry I have a different opinion,because I know ppl who cured their MCAS by diet and gut restoration ,stress managment alone (so did jasmin) plus zee 89 has only a bit of itching,and skin problems.that are no life threatening MCAS symptoms.,let alone she does t even know if it's MCAS I go into anaphalptic for example and have life threatening symptoms...but I know I could reach a stabilized state with diet,because I did that before.but unfortunately can t eat much anymore..,,

I don't disagree that diet is equally important. A histamine-rich diet would be counterproductive. But MCAS also localizes in the GIT. This means that certain diet components can trigger the mast cells in the GIT, which should be avoided. It's nothing to do with mast cell stabilizers though. These are mast cell destabilizers and triggers that, if avoided, can contribute to the alleviation of symptoms. Inflammation in the gut also plays a role and gut inflammation can also be managed.

 

[Irat]

I don't disagree that diet is equally important. A histamine-rich diet would be counterproductive. But MCAS also localizes in the GIT. This means that certain diet components can trigger the mast cells in the GIT, which should be avoided. It's nothing to do with mast cell stabilizers though. These are mast cell destabilizers and triggers that, if avoided, can contribute to the alleviation of symptoms.

What's GIT??

 

[nerd]

What's GIT??

Gastrointestinal tract

 

[Irat]

Gastrointestinal tract

Yes I did say above about gut health too..,,,anyway you can look up yourself how MCAS can be healed or at least largely improve with diet and some more things on Jasmine site.....and I speak about my own experience and it will always be my opinion that before not trying everything else possible,no medication,unless it's life threatening or short term treatment.....antihistamine just make everything worse in the long term.

 

[hb8847]

@Irat seems like you're very attached to doing everything naturally. That's all fine and well but for many people with MCAS that simply doesn't suffice, and in fact many natural adjustments that one can make to the GI tract for example (such as probiotics or dietary changes) can end up worsening symptoms.

There is also not universal acceptance on what causes MCAS in the first instance, it could be GIT issues or it could be elsewhere, so just focusing on the GIT doesn't guarantee you'll reverse the symptoms.

@zee89 As @nerd suggests your symptoms could be being caused by one of the other chemicals that mast cells release, like prostaglandins or leukotrienes. Have you been tested for MCAS, or Histamine Intolerance, and are you seeing a specialist doctor for it? If you want to try Mast Cell stabiliser medications like Ketotifen you'll probably need a prescription, otherwise you can find them online (see the pharmacy guide in the general section). It might be worth trying out other types of H1 and H2 blockers in the meantime and see if they help. Also Vitamin D has been useful for me.

 

[nerd]

trying out other types of H1 and H2 blockers

Rupatadin would be an option with less stabilization (only cytokines), with the same antihistamine efficacy, and with less side effects on the brain (less sleepiness). I think it's the next-best option. My personal experience with Ketotifen is that the sleepiness can be quite notable.

 

[chronicallyill]

@zee89
Do you know what triggers your reaction?

To be honest, I don't. My body just seems in a constant state of reaction out of nowhere. At first I thought maybe it was specific foods but literally my nose will run after anything I eat. I will randomly be sitting down and my knuckles or knees will flare up really red out of nowhere and be hot to the touch. It will last about 20-30 mins and then completely disappear. I can't seem to pinpoint the cause, unless it is environmental which may be harder for me to determine.

 

[vision blue]

ls. Combined with the generally low catecholamine capacity in ME patients, this is one of the methods in which ME might contribute to MCAS.

s.

Can you say more about this? By low catecholamine capacity do you nean low levels of dopamine? Sedotonin? Or do you mean a lower threshold for sensitivity To its effects ? Interested also in what Phenomena or mechanism you had in mind while typing that. Thanjs

 

[nerd]

Can you say more about this? By low catecholamine capacity do you nean low levels of dopamine? Sedotonin? Or do you mean a lower threshold for sensitivity To its effects ? Interested also in what Phenomena or mechanism you had in mind while typing that. Thanjs

Yes, I meant the neurotransmitters of the dopaminergic system - not serotonin. By capacity, I just mean the capability to metabolize these and how much dopaminergic pathway activation will be induced by a regulatory signal. Sporadically, I can think of BH4-mediated limitations. Presumably, hypercreatininuria will also kind of exhaust the adrenal gland capacities because kidney function correlates with adrenal function. Then, there is also the autonomic nervous system that regulates adrenal function. I'd think of it this way. Adrenal function is overregulated, thereby leading to an excess in short-term availability of neurotransmitters but, due to the exhaustion, to a limited long-term capacity. So this translates into perceived short-term "energy" when everything appears normal and subsequent crashes once the overregulation reaches its natural limits. But the short-term "energy" isn't really normal, it's a hormonal overdrive of an overall exhausted system.