Mast Cell Activation Syndrome (MCAS)

[SWAlexander]

Mast cells are found throughout the body and play a complex and critical role in immune response and keeping people healthy. However, when these cells become altered or activate inappropriately to specific triggers, they can create symptoms throughout the body. While mast cell activation syndrome (MCAS) is a relatively new discovery, the prevalence of this syndrome is widespread and, as researchers learn more, mast cell activation may play a role in many other chronic conditions, such as POTS and Long COVID.

What are Mast Cells?
Mast cells are a type of white blood cell that is found in tissue throughout the body. These specialized cells play an important role in a healthy immune system, allowing the body to fight bacterial, viral, and parasitic infections. These cells are filled with mediators of immune function, including cytokines, growth factors, histamine, and heparin. The mast cells release these chemicals in response to changes within their environment, such as allergens or an immune response. The release of these chemicals contributes to symptoms typically seen during an allergic reaction, such as flushing and itching. However, when problems arise within these cells, such as inappropriate or excessive chemical release, a person can experience more severe symptoms, such as abdominal cramping, diarrhea, nausea, muscle pain, low blood pressure, and, in severe cases, anaphylaxis.

What is Mast Cell Activation Syndrome (MCAS)?
Mast cell activation syndrome (MCAS) is a disorder of the mast cells that causes them to release an overabundance of mediators. This release is often in response to non-life-threatening conditions. This abundant release triggers widespread inflammation in the body, resulting in a wide variety of symptoms that can affect multiple symptoms in the body. These symptoms are not just limited to typical allergic responses.
MCAS can affect multiple systems throughout the body, causing a widespread list of possible symptoms.

Diagnosing MCAS
Diagnosing MCAS comes with a variety of different challenges. In most cases, patients see their physicians when they are not experiencing symptoms or in the middle of an episode. The chemicals released by the mast cells only circulate in the body for a short time, making laboratory diagnosis difficult to obtain. For example, total serum mast cell tryptase must be drawn between 30 minutes and two hours after the start of an episode and a 24-hour urine must be started immediately after the start of an episode.
In some cases, physicians may order blood and urine tests, as well as tissue biopsies. In most cases, physicians diagnose MCAS through medical history, a collection of symptoms, and how the patient responds to initial treatment options.

Treatment of MCAS
The goal of initial treatment for MCAS is two-fold. The immediate goal is to address and improve symptoms and quality of life. Secondly, the initial treatment works as a diagnostic tool. If a patient does not respond to an initial treatment of histamine type 1 receptor blockers, such as diphenhydramine and hydroxyzine, chances are they do not have MCAS and are suffering from another condition. Once MCAS is confirmed through a positive response, other treatment options focus on improving symptoms and reducing flare ups of MCAS symptoms.

Medications for the Treatment of MCAS
Medications, as we mentioned, provide symptoms relief and act as a diagnostic tool in the beginning. Some common MCAS medications include:

• Emergency Medications – Adrenaline-based intervention, such as epinephrine (EpiPens) open the airways and work to address anaphylaxis.
• Mast cell stabilizers – Medications, such as ketoifen and sodium cromoglicate, stabilize mast cells and reduce the release of mediators.
• Mediator blockers – Mediator blockers, such as H1 and H2 antihistamines (diphenhydramine, loratadine, ranitidine, or famotidine), anti-leukotrienes, and anti-prostoglandins, help block the effects of mast cell mediators.
• Corticosteroids – Corticosteroids, such as prednisone, help to reduce inflammation.
• Vitamin & Mineral Supplements – Vitamins, such as vitamins C & D, Magnesium, and probiotics contribute to mast cell stabilization, preventing inflammatory responses, and the production, regulation, and breakdown of histamines.
• Omalizumab – This medication blocks the binding of IgE to receptors and helps reduce mast cell reactivity and sensitivity, helping to reduce the risk of anaphylactic reactions.

Low Histamine Diet
Many people with MCAS may find that eating certain foods can trigger symptom flares. This is because many foods we eat contain natural histamines that, when ingested, can trigger symptoms. Physicians may suggest a low histamine diet as a possible solution. However, do not attempt this type of diet on your own, as it can lead to malnutrition. A registered dietician can help you develop a diet plan that reduces your histamine intake while still meeting your nutritional needs.
For many patients, keeping a food diary can be beneficial. Make note of any foods that may seem to trigger symptoms and let both your physician and dietician know what these foods are.

Foods High in Histamines

• Alcoholic beverages
• Eggplant
• Pickled or canned foods
• Matured cheeses
• Smoked meat or lunch meats (salami, ham, sausage, etc.)
• Shellfish
• Beans
• Long-stored nuts (peanuts, cashews, almonds, pistachios)
• Chocolate and cocoa-based products
• Pre-made meals (tv dinners)
• Salty snacks
• Anything with preservatives and artificial colorings
• Processed foods

Foods Low in Histamines

• Fresh meats
• Fresh fish
• Cream cheese, butter, and mozzarella cheese
• Fresh chicken
• Eggs
• Fresh fruits, with the exception of plantains and citrus (citrus foods are considered histamine releasers)
• Fresh vegetables, with the exception of tomatoes, eggplant, and spinach
• Grains
• Fresh pasteurized milk

Common MCAS Comorbidities
Studies on MCAS have found correlations with many other medical conditions. In many cases, it is unclear whether the MCAS predates the other conditions or if the other conditions triggered the MCAS. Some common comorbidities seen with MCAS include:

• Postural orthostatic tachycardia syndrome (POTS)
• Myalgic encephalomyelitis/chronic fatigue syndrome
• Ehlers-Danlos syndrome (EDS)
• Irritable bowel syndrome (IBS)
• Fibromyalgia
• Cancer
• Complex regional pain syndrome (CRPS)
• Neuropsychological conditions (autism, anxiety, and depression)
• Epstein-Barr virus (EBV)
• Thyroid disease
• Celiac disease
• Sickle cell disease

MCAS and Long COVID
Many Long COVID patients are also being diagnosed with MCAS. However, it is unknown currently if the SARS-CoV-2 virus triggers mast cell dysfunction or if an underlying mast cell dysfunction contributes to the development of Long COVID. Researchers believe that the SARS-CoV-2 virus increases activation of the mast cells, resulting in the symptoms many see with Long COVID. If this is the case, possible MCAS treatments, such as H1 and H2 mediator blockers, may prove to be an effective therapy for both MCAS and Long COVID.
https://rthm.com/mast-cell-activation-syndrome-mcas/

 

[Crux]

Copper is needed to form DAO for histamine metabolism.

https://me-pedia.org/wiki/Copper#:~...ctor for,also necessary for creating collagen.

"Copper is an essential trace dietary mineral. Copper works with iron to help the body form red blood cells. It also helps keep the blood vessels, nerves, immune system, and bones healthy. Copper also aids in iron absorption. Copper is a cofactor for diamine oxidase, an enzyme that breaks down histamine, a chemical released by mast cells. Copper deficiency is associated with increased tryptase[1], a marker of mast cell activation. And it is also necessary for creating collagen. "


MEpedia cites this paper in its discussion of copper, tryptase, and mast cells ;

https://www.jimmunol.org/content/199/12/4132


"In this article, we provide evidence suggesting that mast cells are dependent on a precise regulation of copper status to maintain proper granule homeostasis. Copper, thereby, emerges as a novel factor that influences mast cell phenotype."

 

[Ethereal55]

Currently looking into this as well, though actually getting diagnosed will be hell, hate having to convince GPs who have never heard of this to refer me to a specialist, then having to wait like a year or more to even get to them ugh.

Anyway, i am currently trialing Ebastine as an H1 blocker, supposedly has some positive effect on GI symptoms as well, so far all it did was make me drowsy, but it's only been 2 days so... Anyone have experience with Famotidine longtime specifically for MCAS? I was gonna try that in combination with the H1, but concerned about it's effects on the GI tract (i have "IBS" tons of intolerances, ruined microbiota etc.)

 

[vision blue]

@Crux i had docs order blood test for zinc and copper a couple years agonto check and both looked within normal range and with an ok ratio but perhaps i dont know how to read between the lines on this issue. Also had hair mineral analysis done

@Ethereal55 I tried pepcid for MCAS but only briefly. I actually felt surprisingly good on it unexpectedly but had 2 problems so did not continue. One is it gave me a stomach ache. The other is i get major acid rebound from
H2 blockers when i go off so i really didnt want to set up that kind of dependence I sonetimes wonder if big rebounds from meds is a feature of mcas as well but have never seen it discussed. I tried looking aroubd for a natural h2 blocker but coukdnt find any

I wish i could find. a trace amine detector blocker.

 

[Crux]

@vision blue , There are researchers on both sides of the accuracy of serum blood tests for copper and zinc.
Ceruloplasmin is another test which estimates the amount of bound copper.

My tests seemed pretty accurate, but I still had to figure out dosage. After trying to get enough copper from food, I developed low copper symptoms ; allergies , more fatigue, joint pain, heart and liver pain, infections.

Now I just take a 2.5 mg. tablet of copper glycinate daily. Solgar

Also, I began to take either low dose cod liver oil, or a capsule of desiccated liver for the active vitamin A.
My ceruloplasmin increased from low normal to mid normal.

People with low copper can still have normal to high serum copper and ceruloplasmin due to infection and inflammation, but low copper in the rest of the body.

 

[Rufous McKinney]

mast cell activation syndrome (MCAS) is a relatively new discovery

bless you for this timely post.

MCAS has been selected by me to: gotta fix this. This has got to stop, this can't keep going on, there has to be some help for this awful symptom that tortures me EVERY SINGLE DAY.

I'm going to try some different method to my madness. Just look at this one thing and really try to figure something out.

Looking at the unravelment of 50 body systems, is not working in my case. This method is not working. Think of something else.

 

[Rufous McKinney]

ANYONE very familiar with taking these drugs?

I cannot tolerate any side effect that results in "drying". Drying is a major symptom thats killing my body.

I have not yet been brave enough to try a simple experiment: just try taking a Benadryl.

I get severe angiodema in my mouth and throat and sinuses- every day. Its comes on intensely at 5 pm when the Yin is gone, leaving only heat.

I just have to do it as a test. If it further dries my tongue, throat and sinus, I simply choke. I choke, and that is that.

this is why I can't take most medications, as it creates this horrific worse angiodema.

I was the kid allergic to everything, like in the movies. (not bubble boy, but close).

Physical evidence of all these allergies, subsided. I think they morphed into some other version of allergies.

68 years later.....I haven't figured this out?

 

[vision blue]

bless you for this timely post.

MCAS has been selected by me to: gotta fix this. This has got to stop, this can't keep going on, there has to be some help for this awful symptom that tortures me EVERY SINGLE DAY.

I'm going to try some different method to my madness. Just look at this one thing and really try to figure something out.

Looking at the unravelment of 50 body systems, is not working in my case. This method is not working. Think of something else.

The gastroparesis from MCAS? Didnt know.

 

[vision blue]

@Rufous McKinney benadtyl can be dryonh (i almost typed @Benadryl rufous can be drying!)

Im intolerant of B but for other reasons

Ypu havent tried stuff for MCAS yet? Maybe youll get fixed.

If you do 4 times in a day salivary cortisol testing, whats your result? (If u say too dry to do in one day, can collect on different days which is what i had to do but didnt tell the lab that)

Your symptons of mouth swelling combined with gastrparesis sounds like the symptoms of mcas a friend of mine ets- not that that helps any

What have you tried for MCAS so far? Or are you nor sure you have it?

Things ive tried have been mixed

 

[Rufous McKinney]

Ypu havent tried stuff for MCAS yet? Maybe youll get fixed.

no, I've failed. Allergist immunologist refused my appointment. My mistake: I thought I could maybe find antivirals. Which to me, should be an immunologist. By telling them that, they called back and refused to see me, can't help me.

Your office can't even give me some advice? How rude. Who might be able to help me? Anyone?

The messages I am given is: do not seek help from them.

do not get help form doctors is the message my life operated under from the time I was 16, and now its decades later.

What have you tried for MCAS so far? Or are you nor sure you have it?

Ive taken very few Pharma drugs my entire life. I do chinese herbs and mostly refuse or find I can't tolerate whatever it is when its pharam

To fully participate in an actual real medical situation and successfully treat it, has never happened in my entire life.

 

[Rufous McKinney]

If you do 4 times in a day salivary cortisol testing, whats your result?

never done that test.

I did not properly follow procedures for a 24 hour urine test. Cognitive dysfunction.

My salivary glands in my mouth, the main ones...seem to produce saliva. My tongue and throat are wiped out. Things are very very messed up here.

 

[Rufous McKinney]

This web site has some good, useful information...some might like to check it out...

https://www.drlamcoaching.com/nem-t...vation-syndrome-the-immune-system-gone-wrong/

From looking at this, I'm reasonably sure I cannot tolerate antihistamines.

I'll have to find some other route, and everything discusses troubling side effects.

 

[Jyoti]

I get severe angiodema in my mouth and throat and sinuses- every day. Its comes on intensely at 5 pm when the Yin is gone, leaving only heat.

Damn, Rufous---that Dr. Lam article you linked to lists angiodema as a symptom of MCAS.

So....maybe it wouldn't further dry you out if the heat is actually the result of mast cell degranulation? (Along with the diminishment of Yin of course.)

My dysautonomia doctor wanted me to trial an H1 and an H2 blocker, which is often part of the diagnostic process. For whatever another diagnosis might be worth.. Instead of benedryl, which I kinda hate, I tried Allegra. And Pepcid for the GI based mast cells. Something has made a noticeable difference, but like you I have no desire to be 'on' these meds.

Still, it WAS helpful for me--not saying the same will be true for you, but I suppose it could be?--to notice the difference it made to block histamines. I had no idea whatsoever, because totally unlike you, I have never had an allergic reaction in my life. Well, nothing to write home about, anyway.

I am looking at some of the herbal and dietary approaches now. Maybe there will be something that helps a bit. My fingers are crossed for you too.

 

[Rufous McKinney]

I am looking at some of the herbal and dietary approaches now. Maybe there will be something that helps a bit. My fingers are crossed for you too.

your so kind.....

I'm willing to just try somethings like that and see what happens, typically you find out pretty quickly if you can tolerate a pill. I'll convince myself it cannot be as bad as the Two Days on Zoloft. (OMG)

At least it helps inform the situation. thats something. I am further cutting down on my occasional glutamate ridden Asian meal: can't handle it. Even tho I love how that all tastes. and I want snow peas and crunchy bean sprouts.

I had no idea whatsoever, because totally unlike you, I have never had an allergic reaction in my life. Well, nothing to write home about, anyway.

Its always been this strange thing that I was covered in these horrific allergies for years. Shots, highly restricted diets. As far as in high school, I"d get odd allergic things, rashes, eyes swelling up, fun stuff.

Then it just stopped and "evident" allergic things hardly ever occur.

THAT Is the mistake. It changes somehow, into some thing else, and its trickier it seems.

 

[Johannes]

Many of my MCAS symptoms disappeared with vitamin D shoots. When my vit D level rise above approximately 100-120nmol/l, most of them are gone. But I try to keep the level closer to 300nmol/l = 120ng/ml.

I am unable to use any oral medicines or supplements because of my chemical sensitivity. I don't know if this is caused by my CFS or my MCAS. If I eat amines, salicylates or glutamate, or artificial flavoring or coloring agents, I get really bad inflammation into my bowel and also fever. My gut becomes leaky with its own symptoms. Sunshine helps my CFS symptoms tremendously. During Summer, I am also able to eat some foods containing salicylates and amines which is not possible in Winter. Vitamin D helps also with my bowel problems.

If I don't get my vitamin D shoots minimum every two weeks, preferably every ten days, I get really bad depression and headache, but only if I use too much my brains or if I do too much physical stuff. I don't know if this is because of my CFS or my MCAS.

Does anyone know how to help with really bad food intolerance with out medication or supplements?

 

[BrightCandle]

Does anyone know how to help with really bad food intolerance with out medication or supplements?

I have gradually reduced my food intolerances using small amounts of problematic foods and pre and probiotic interventions. Initially I started with probiotic drugs, then small quantities of problematic food like soya, rice and potatoes. Some months later I added small amounts of fermented milk in the form of kefir and now with ever increasing amounts of home made kefir, yoghurt and fermented cabbage. My lactose intolerance is completely gone, I can eat just about whatever I want and I haven't had a constipated episode this year at all. I have no idea if this sort of thing works for others but after I saw my microbiome report from biomesight 1.5 years ago I was pretty certain I could change it. I needed to very gradually and slowly push my gut to process various foods and build up the right bacterial mix. Whatever it is in ME/CFS that disrupts the biome needs to be counteracted with substantial action, slowly at first and then a lot. Its one of the 3 areas of treatment I have done in the past 6 months that has presumably led to my improvement. My gut works a lot better now, not fixed but after a year its getting there and I still eat crazily but I don't have to worry about occasional pizza or something else that would previously cause big problems.

 

[Rufous McKinney]

I am unable to use any oral medicines or supplements because of my chemical sensitivity.

Vitamin D: very interesting.....

I"m striving to get outside on the lawn chair. There are stairs/ I'm crashed for now.

The chinese herbs I take can help. Ive not taken them much recently, hence I got nailed with a relapse after extreme stress. I have found them far more tolerable, than most Pharma pills.

Sharing that Last night I went into a massive MAST CELL ACTIVATION event- and I started itching really really intensely everywhere just about. This does not normally happen, its abnormal.

 

[Rufous McKinney]

The gastroparesis from MCAS? Didnt know.

This I do not know.

But because the gastroperesis is so stomach - flu like, including fever and cycles of chills....I think a virus is reactivating in my case.

 

[vision blue]

@Johannes our sensitivities are tge same: amines, glutimates, salicylates, flavorings!

@Rufous McKinney
I know you hate docs and i do too. But recurrent fever (assuming its in the range MDs woukd consider fever. Ive had huge devates with them over this) is both a good excuse to see one about - you dont have to let them even touch you- tell “them” about the fevers and the 7 day ordeal you just had. Just to get input from what they would do even if you decide not to do it

And by “them” i mean the following.
It take me a while to get to the point

Infectioud Disease docs are for any chance of recurrent virus

Allergist/imuniologist is for MCAS (tho you may have to find ome who does that)

Here’s what I would do. Id lie. Id call back the allergist/immunologist and say Im so sorry My doctor (im
Making thid up but its exactky how is lie). Told me to see two specialists, an allergist abd an i fectious disease doc. But i got them mixed up! Im so sorry. I gave yku the wrong info before. Can the dictorv(allergist) see me to evaluate for MCAS?
And then also find an infectious disease doc and tell them about the fevers and 7 days of inqbility to eat

Just for info purposes, the conventional treatment aporoach for mcas can include

H1 blockers
H2 blockers
Ketotifin
Cromykn sodium
(Gleevac)

Alternative approach can include
Quercitqn
Push balance from Th2 to T1
Avoid hustamine containing foods

Yiu know, you could even have mastocytosis not MCAS. In fact when you call back the allergist, also say evaluation for mastocytosid and mast cell activation sundrome.
Unlike mcas, mastocytosid is taken seriously by all doctors

Some other time I will tell you my experiences trying the various things on the list

Reason I suggested measuring the cortisol is that in some people allergic to everything can be a sign of cortisol insufficiency. IYou just do it once in the morning at four times is too taxing. And You can do it from home. I recommend ZRT abs and a good honest middleman is Canary Club. If you dont like them i recently used a middleman that was even cheaper and legitimate.

The tongue theoat thing is interesting.

Amazing what a difference a few days make. I can tell that you are in a different state physiologically than you were just a few days ago when we had extended conversations

 

[Rufous McKinney]

This is incredibly helpful to me, thank you. Your encouragement means so much!

Yesterday later, the following developments arose:

body dumping metals- my mouth and everything is horribly metallic and PEM amps up.

itching everywhere that doesn't normally itch, at 11 pm after PROGRESSO SOUP

lots of tachycardia, here lately,

Today I feel further setback.

To remedy this I must produce a large pot of chicken rice vegetable soup as I am literally now starving.

So this wiped out I"ve spent the day manifesting soup and begging for ingredients and chopping.

Oh: also I can now no longer tolerate my very hot Epsom salt baths: totally can't tolerate the heat and my body is poised to get a heat rash, which is not allowed. This was discovered because I had to wash my hair...after 21 days...