2 schools of thought you will encounter with MCAS

Blake2e

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Type 1: This Immunologist/doctor uses a holistic approach and makes the diagnosis of MCAS based on a plethora of blood/urine and other testing, clinical symptoms and if drugs like antihistamines and mast cell stabilizers improve symptoms.

This kind of doctor uses the same diagnostic criteria that TMSforacure, Afrin, Molderings and every study I've personally come across (and that's a lot, to give perspective, I could read a 300 page book in 2 days, 5 hours each day, and teach myself an entire upper division science course in a week and ace exams others spend months for the same result. And I've been obsessively researching MCAS for almost 2 yrs). If tryptase is normal but other mast cell mediators are elevated then that minor criterion for MCAS is considered fulfilled for doctors of this type.

Type 2: This kind of doctor makes the diagnosis of MCAS using a single diagnostic criterion. If your tryptase is greater than 20 ng/ml or your baseline trypase increases by 20% plus 2 ng/ml after a reaction. And if you don't have this then they will say with absolute confidence that you do not have MCAS. You can bring up a plethora of other blood work and symptoms that strongly indicate mast cell activation and they will viciously explain it all away with a logic so convoluted and fallacious that, if believed, the only conclusions that can be drawn is that labs always mishandle blood samples and you don't have 1 disorder but over 20 different ones. They'll also misinterpret and twist what you say in a way that you can't help but think they're talking about another case.

If you're like me, you don't just accept something, especially wild conjecture, without proof no matter who it comes from. And if you're like me you thoroughly understand how your disease works, right down to the molecular level. Question their logic and point out their inconsistencies. Ask why is this [mast cell mediator] level so elevated if mast cells aren't the problem, where could it possibly come from? They'll buckle. One allergist I saw, just kept saying "you don't have MCAS" in an increasingly authoritative voice over and over. That's not how this works doc, you need something called evidence and proper reasoning to prove why something that behaves exactly like MCAS isn't MCAS. This particular allergist recommended a psychiatrist for my "fixation." Newsflash, been seeing one for almost 7 years and all I have is ADHD.

Next thing you can do is genuinely ask "if it isn't MCAS, then what can it be? What tests do you recommend to figure this out?" Again they'll buckle and have no answer and try to end the appointment. I've had this happen with 2 Allergists. Both good people I assume but out of touch with research and irrationally fixated on what I suspect was the old approach to MCAS. They'll say everything you're doing is wrong with no proof or differential diagnosis and then shrug their shoulders when you accept their claim and ask what to do for the symptoms.

My main Immunologist confirmed these two schools of thought to me Take my experience as a cautionary tale. MCAS is hard enough as it is, you don't need anyone that has no answers wasting your time and energy.
 

Blake2e

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@Blake2e I'm sorry you've had people with such closed-mindedness. I, too, have found that a great deal of study and thought is required to know what to say to someone whose system precludes truth beyond their ken.
With these people its best to just leave, thats what I shouldve done instead of engaging with them. I naively thought their bold assertions were backed by reason, but after gently probing I was met with dirty lawyer tactics, insults, emotional appeals and appeals to their own authority as doctors. All pathos and ethos, no logos.
 

Hope4

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@Blake2e I think you are right, turn and leave. I've heard it said that it is best to leave them smiling, that is, with them smiling. And it takes great finesse to charm those who are smug in their dismissiveness.

The person who lives in the closed system will often do anything at all to defend their system, because their identity is so enmeshed in that belief system.

I hope you have been able to find real help. I am sending you smiles and the best of thoughts. :)
 
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@Blake2e

I can relate to that struggle. I am very sad that in a new paper by Valent et al (2019) the diagnostic criteria suggested for MCAS diagnosis are again only tryptase elevation and recurrent anaphylaxis. Other markers like leukotrienes, histamine etc. are considered too unspecific... even heparin. Only mast cells produce heparin in significant amounts - where else should it come from? And if you have a huge amount of mast cell mediators in your body, you can feel pretty shitty - although you do not struggle with anaphylaxis most days.

I am pretty bothered by this b/c it makes our life as patients much harder than it is already.
 
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Type 1: This Immunologist/doctor uses a holistic approach and makes the diagnosis of MCAS based on a plethora of blood/urine and other testing, clinical symptoms and if drugs like antihistamines and mast cell stabilizers improve symptoms.

This kind of doctor uses the same diagnostic criteria that TMSforacure, Afrin, Molderings and every study I've personally come across (and that's a lot, to give perspective, I could read a 300 page book in 2 days, 5 hours each day, and teach myself an entire upper division science course in a week and ace exams others spend months for the same result. And I've been obsessively researching MCAS for almost 2 yrs). If tryptase is normal but other mast cell mediators are elevated then that minor criterion for MCAS is considered fulfilled for doctors of this type.

Type 2: This kind of doctor makes the diagnosis of MCAS using a single diagnostic criterion. If your tryptase is greater than 20 ng/ml or your baseline trypase increases by 20% plus 2 ng/ml after a reaction. And if you don't have this then they will say with absolute confidence that you do not have MCAS. You can bring up a plethora of other blood work and symptoms that strongly indicate mast cell activation and they will viciously explain it all away with a logic so convoluted and fallacious that, if believed, the only conclusions that can be drawn is that labs always mishandle blood samples and you don't have 1 disorder but over 20 different ones. They'll also misinterpret and twist what you say in a way that you can't help but think they're talking about another case.

If you're like me, you don't just accept something, especially wild conjecture, without proof no matter who it comes from. And if you're like me you thoroughly understand how your disease works, right down to the molecular level. Question their logic and point out their inconsistencies. Ask why is this [mast cell mediator] level so elevated if mast cells aren't the problem, where could it possibly come from? They'll buckle. One allergist I saw, just kept saying "you don't have MCAS" in an increasingly authoritative voice over and over. That's not how this works doc, you need something called evidence and proper reasoning to prove why something that behaves exactly like MCAS isn't MCAS. This particular allergist recommended a psychiatrist for my "fixation." Newsflash, been seeing one for almost 7 years and all I have is ADHD.

Next thing you can do is genuinely ask "if it isn't MCAS, then what can it be? What tests do you recommend to figure this out?" Again they'll buckle and have no answer and try to end the appointment. I've had this happen with 2 Allergists. Both good people I assume but out of touch with research and irrationally fixated on what I suspect was the old approach to MCAS. They'll say everything you're doing is wrong with no proof or differential diagnosis and then shrug their shoulders when you accept their claim and ask what to do for the symptoms.

My main Immunologist confirmed these two schools of thought to me Take my experience as a cautionary tale. MCAS is hard enough as it is, you don't need anyone that has no answers wasting your time and energy.
Thanks for your advice. I’m going through a similar issue with my ME/CFS specialist who thinks MCAS is “just another manifestation of the illness.” My geneticist is referring me to someone he uses for MCAS for a second opinion.
 

Galixie

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Can I ask what are the primary symptoms those with MCAS experience? Hopefully this isn't too complicated of a question...
For me the primary symptoms are itching and hives. So far those are the symptoms that just won't go away, so I assume they are my new baseline normal. :(

In addition to those, I also get dizzy spells, dermatographia, nausea, sore muscles, flushing, fatigue, scratchy/sore throat, coughing, and cognitive problems (foggy thinking and inability to focus). Also some form of GI distress, such as vomiting or heartburn, seems to occur whenever my flare up is particularly bad.

From what I've been reading, MCAS affects everyone so differently that there's no real definitive list of common symptoms. Many of the symptoms overlap with other conditions too.
 

Galixie

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Thanks @Galixie, appreciate your input!

I know and obviously you acknowledge that MCAS can have a ton of overlap with comorbidity conditions most likely, but was there certain testing or markers for you that validated your MCAS?
I really haven't pursued testing beyond having an allergist confirm the dermatographia. I'm on the fence about getting any other testing done. I feel reasonably confident that it is MCAS rather than something more rare such as systemic mastocytosis. I figure the hives are a kind of proof. It also seems like a thing most doctors are either not going to know a lot about or aren't going to take seriously so, even if I got tested and had positive test results, I'm still on my own to figure out how to treat it/live with it.

For me, I guess the validation was that I went to an allergist, didn't test positive for any of the tree pollens (that I thought might be the culprit), but did test strongly positive for dermatographia. When I combine the dermatographia with the other symptoms (like muscle soreness) that the allergist didn't know what to make of, it added up to MCAS.
 

Blake2e

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@Blake2e

I can relate to that struggle. I am very sad that in a new paper by Valent et al (2019) the diagnostic criteria suggested for MCAS diagnosis are again only tryptase elevation and recurrent anaphylaxis. Other markers like leukotrienes, histamine etc. are considered too unspecific... even heparin. Only mast cells produce heparin in significant amounts - where else should it come from? And if you have a huge amount of mast cell mediators in your body, you can feel pretty shitty - although you do not struggle with anaphylaxis most days.

I am pretty bothered by this b/c it makes our life as patients much harder than it is already.
Interesting, that must've slipped by me as I mostly read about pathophysiology biochemistry and pharmokinetics/mechanisms. I'll have to read that study. Thats really terrible though that such a study was published, hopefully its not a consensus study.

...

Just read the article for the study, seems like their point is serum trptase is the best marker for MCAS buts its presence or lack thereof isn't enough to be used as the sole determinant of diagnosing MCAS. They also understandably have beef with urine histamine metabolites. Serum histamine also has the same issue as the urine test b/c histamine in Basophils and the produced histamine metabolites resulting from that may interfere and not give an accurate representation of mast cell activation. Plasma histamine is much more reliable for indicating mast cell activity, as basophils in the whole blood is separated.

So that article/study is different from second type of MCAS doctor I described in the original post. Those type 2 doctors make tryptase the defining diagnostic test for MCAS. That study/article simply reiterates the importance of tryptase in mast cell activation but states MCAS can still be diagnosed even with normal levels.

...

Edit: Found a full version of the actual study (see attached pdf file) that you mentioned and I just finished reading it. I actually like this study and its detail quite a bit, especially their differential diagnosis. Initially it does really sound like tryptase is the be-all and end-all of diagnosing MCAS but reading on...

["""In other patients, severe symptoms may be recorded, but tryptase levels increase only slightly. In these patients, it is reasonable to determine the levels of additional relevant mediators such as PGD2, if the test is available. Whenever a major increase in the PGD2 metabolite level is found and the symptoms respond to cyclooxygenase inhibitors, the diagnosis of MCAS may also be considered27 although the cell source may be
ambiguous, particularly if both tryptase and histamine or histamine metabolite levels are normal. In such patients, the symptoms must be severe and the increase in mediator levels must be substantial."""]


So in this study they are being very reasonable and are not saying tryptase is the sole cornerstone of diagnosing MCAS. They're emphasizing its importance but not being closed-minded about it's lack of presence when all or many other signs point to MCAS. Very different from the 2nd type of doctor I described in my original post.
 

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Gingergrrl

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Type 1: This Immunologist/doctor uses a holistic approach and makes the diagnosis of MCAS based on a plethora of blood/urine and other testing, clinical symptoms and if drugs like antihistamines and mast cell stabilizers improve symptoms.

This kind of doctor uses the same diagnostic criteria that TMSforacure, Afrin, Molderings and every study I've personally come across (and that's a lot, to give perspective, I could read a 300 page book in 2 days, 5 hours each day, and teach myself an entire upper division science course in a week and ace exams others spend months for the same result. And I've been obsessively researching MCAS for almost 2 yrs). If tryptase is normal but other mast cell mediators are elevated then that minor criterion for MCAS is considered fulfilled for doctors of this type.
My MCAS specialist (an allergist/ immunologist) falls into this first group of doctors re: his diagnostics and treatment of MCAS.

So in this study they are being very reasonable and are not saying tryptase is the sole cornerstone of diagnosing MCAS. They're emphasizing its importance but not being closed-minded about it's lack of presence when all or many other signs point to MCAS. Very different from the 2nd type of doctor I described in my original post.
Thank you for summarizing this study for us and I am glad that it acknowledges that Tryptase can be normal in many people with MCAS (like it was for me). My diagnosis in 2015 was based on constant anaphylaxis, plasma histamine levels 4x the normal limit, extremely elevated prostaglandin levels, plus significant improvement in symptoms from Ketotefin (mast cell stabilizer).

We called most of the MCAS doctors in my state in 2015 and many only treated patients with Mastocytosis and elevated Tryptase levels. But mine was open-minded and found the right meds for me (after I had tried everything known to man before finding him). My MCAS went into remission by the end of 2016 from IVIG and has never returned. But the whole thing was so traumatic that it still feels like yesterday.
 

Blake2e

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Thank you for summarizing this study for us and I am glad that it acknowledges that Tryptase can be normal in many people with MCAS (like it was for me). My diagnosis in 2015 was based on constant anaphylaxis, plasma histamine levels 4x the normal limit, extremely elevated prostaglandin levels, plus significant improvement in symptoms from Ketotefin (mast cell stabilizer).

We called most of the MCAS doctors in my state in 2015 and many only treated patients with Mastocytosis and elevated Tryptase levels. But mine was open-minded and found the right meds for me (after I had tried everything known to man before finding him). My MCAS went into remission by the end of 2016 from IVIG and has never returned. But the whole thing was so traumatic that it still feels like yesterday.
No problem. After going over that study, my opinion of those 2 Allergists has sunken even lower. They're obviously intelligent and seem like they have good intentions but "stupid" will forever be the word I associate with them. Intellectual slackers and people closed off to sound logic are the worst people to talk to about important things. While these 2 did frustrate me initially, I'm emotionally neutral about them now. There are dumb doctors and there are smart-but-still-dumb doctors, and you gotta find the genuinely smart ones.

Good that you found a good doc relatively quick, I also got lucky and found a good one right off the bat. I could only imagine the level of suffering if I went to those other 2 allergists first.
 

Gingergrrl

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Intellectual slackers and people closed off to sound logic are the worst people to talk to about important things.
Agreed :headslap:

Good that you found a good doc relatively quick, I also got lucky and found a good one right off the bat. I could only imagine the level of suffering if I went to those other 2 allergists first.
I was very lucky that I found my main doc in 2014 and my MCAS doc in 2016. I cannot imagine what might have happened to me if I had not found them. The list of other docs who were unhelpful, unkind, mean-spirited, and out-right dangerous is too long to even list and I hope to reach a point that I feel "emotionally neutral" about them like you said above.
 

Blake2e

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Agreed :headslap:



I was very lucky that I found my main doc in 2014 and my MCAS doc in 2016. I cannot imagine what might have happened to me if I had not found them. The list of other docs who were unhelpful, unkind, mean-spirited, and out-right dangerous is too long to even list and I hope to reach a point that I feel "emotionally neutral" about them like you said above.
I think I'm naturally the type of person who, if I feel an emotion, it comes and goes pretty fast. Something could panic me and within 30-60 minutes, sometimes even less, I'll come up with a plan and then the emotion will fade and I'm back to being emotionally neutral pretty fast, same with good emotions. I think my MCAS contributes at least somewhat to this as I find it sometimes deadens my emotions and fire within. But after a few nights of no sleep and eating little-to-no food thanks to MCAS, I'll be an emotional wreck for however many days it takes to figure out something that can remedy the situation. When my MCAS is controlled, bad emotions still fade pretty quick but I find I could make good emotions/energy linger for long periods of time.
 
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@Blake2e
Thank you for attaching the paper and also writing down the important points stated in the paper. I have to admit I have only read the article and at first glance it sounded to me like they only used serum tryptase as the defining marker and that annoyed me. I will read the full paper though.

They also understandably have beef with urine histamine metabolites. Serum histamine also has the same issue as the urine test b/c histamine in Basophils and the produced histamine metabolites resulting from that may interfere and not give an accurate representation of mast cell activation. Plasma histamine is much more reliable for indicating mast cell activity, as basophils in the whole blood is separated.
That is quite fascinating. Is this also stated in the paper? - I had trouble obtaining diagnosis because my urine methyl histamine did not increase - but I had three times above normal plasma histamine levels...

Has anybody concomitant autoimmune disease? (I know of @Gingergrrl ) - and if so: Has anybody ever experienced that your mast cell doctor "re-classifies" your antibodies as "pseudo-antibodies" - saying mast-cells can produce all sorts of "usually non-pathogenic" antibodies and then kind of dismisses your "normally considered pathogenic" antibodies? That happened to me... Now rheumatology is upset, because they feel, that their diagnosis is questioned and refuse treatment and on the other hand a second allergy/mast cell specialist now states that my rheumatic diseases could also activate mast cells, so rheumatology should progress in treating my disease (which they refuse now) - and over this chicken egg discussion, which fills medical letters, nobody really wants to do anything.

@Blake2e Please let me know, if I am hijacking your thread with this... I do not know If I remember correctly - you also had the CellTrend Lab done and were positive for many antibodies and got Rituxan treatment? (Or do I confuse you with somebody else?) I have found an interesting article about the relationship between mast cells/POTS and the "POTS-antibodies" and some of them seem to have the potential to degranulate mast cells.
http://www.sciencedirect.com/science/article/pii/S1566070217303387

Did you experience any improvement with Rituxan? I am highly positive for 9 out of 11 - but of course my mast cell doctor thinks these are all pseudoantibodies now ;):bang-head:
 
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@Blake2e
Thank you for attaching the paper and also writing down the important points stated in the paper. I have to admit I have only read the article and at first glance it sounded to me like they only used serum tryptase as the defining marker and that annoyed me. I will read the full paper though.
That was the same conclusion that folks over at s4me came to as well. Basically the thought was that a bunch of mast cell doctors got together to publish this consensus criteria so that GP's stop sending people to them - they require the tryptase marker, or some other markers + anaphylaxis. Then here and there in the paper they say there are a very few cases outside this strict criteria that may have MCAS if they have some of the other markers.
Link to s4me discussion

Loved your first post @Blake2e . I hadn't realized until recently about this battle going on between the two camps.
 
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Blake2e

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@Blake2e
Thank you for attaching the paper and also writing down the important points stated in the paper. I have to admit I have only read the article and at first glance it sounded to me like they only used serum tryptase as the defining marker and that annoyed me. I will read the full paper though.
No prob.


That is quite fascinating. Is this also stated in the paper? - I had trouble obtaining diagnosis because my urine methyl histamine did not increase - but I had three times above normal plasma histamine levels...
They touch on that a little but dont explain it like I did.

Now that is interesting, low histamine metabolites in urine by high plasma histamine levels. Could be a sign of system struggling to detox excess histamine, hows your liver and kidney functions? What was your plasma histamine level exactly?

Has anybody concomitant autoimmune disease? (I know of @Gingergrrl ) - and if so: Has anybody ever experienced that your mast cell doctor "re-classifies" your antibodies as "pseudo-antibodies" - saying mast-cells can produce all sorts of "usually non-pathogenic" antibodies and then kind of dismisses your "normally considered pathogenic" antibodies? That happened to me... Now rheumatology is upset, because they feel, that their diagnosis is questioned and refuse treatment and on the other hand a second allergy/mast cell specialist now states that my rheumatic diseases could also activate mast cells, so rheumatology should progress in treating my disease (which they refuse now) - and over this chicken egg discussion, which fills medical letters, nobody really wants to do anything.
As far Im aware, I have no autoimmunes. But "pseudo-antibodies" produced by mast cells sounds more like your MCAS doc is making stuff up as he goes along or hes been listening to some quackery. I would go with what your 2nd MCAS doc and try to convince Rheumatology to work with your 2nd MCAS doc. If that doesnt work you may need to find a new Rheumatologist.

@Blake2e Please let me know, if I am hijacking your thread with this... I do not know If I remember correctly - you also had the CellTrend Lab done and were positive for many antibodies and got Rituxan treatment? (Or do I confuse you with somebody else?) I have found an interesting article about the relationship between mast cells/POTS and the "POTS-antibodies" and some of them seem to have the potential to degranulate mast cells.
http://www.sciencedirect.com/science/article/pii/S1566070217303387
Youre fine. I did not do CellTrend. My POTS is secondary to my MCAS, as it only comes up when my MCAS is acting up. I started Rituxan b/c my body was producing IgE to everything I came into contact with.


Did you experience any improvement with Rituxan? I am highly positive for 9 out of 11 - but of course my mast cell doctor thinks these are all pseudoantibodies now ;):bang-head:
Tremendous positive change with Rituxan. Ditch that pseudo-doctor asap.
 

Gingergrrl

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I think I'm naturally the type of person who, if I feel an emotion, it comes and goes pretty fast.
I am very different but that would be a whole different thread ;)

Has anybody concomitant autoimmune disease? (I know of @Gingergrrl ) - and if so: Has anybody ever experienced that your mast cell doctor "re-classifies" your antibodies as "pseudo-antibodies"
You are the only person @LiLaLu that I have ever heard of a doctor telling them that their autoantibodies were "pseudo antibodies" b/c of MCAS. And now I forgot if I have asked you, have you asked this question in any of the Masto groups?

I have found an interesting article about the relationship between mast cells/POTS and the "POTS-antibodies" and some of them seem to have the potential to degranulate mast cells.
Although I cannot explain the science, a very high percentage of the people in the MCAS groups where I used to post also had POTS. And in the group for people w/my Calcium Channel autoantibody, almost 100% of the people had POTS which was shocking to me at first.

Could be a sign of system struggling to detox excess histamine, hows your liver and kidney functions?
That is a very good question (and I know it was directed at LiLaLu and not me :D) but in my case, when my plasma histamine was 3-4x the normal limit (Dec 2014), we did not test my urine histamine. We did test it many months later (around July 2015) but it was normal at that time. And in my case, my liver and kidney function is normal (but I am a very slow metabolizer of meds through the liver).

My POTS is secondary to my MCAS, as it only comes up when my MCAS is acting up.
I was completely the opposite in that I had POTS for over two full years (Jan 2013 to approx March 2015) when I had the first anaphylaxis/MCAS reaction. Although we think I had sub-clinical MCAS for most of my life.

Tremendous positive change with Rituxan.
Likewise (although I think for different reasons than you did).