Normal people have mast cells and they get activated and we know what that looks like. There is no pathological 'syndrome' that is different from that and which is not already known under asthma or urticaria or mastocytosis or what has been in the textbooks for decades. The guy who tries to sell this idea, Lawrence Afrin, I thought might be some bright new immunology whizkid with something special to say. But from his videos he comes across as another ageing muddled empire builder who has no real idea what he is talking about.
It’s interesting you say this because this is what I was thinking too, from reading about it. But I don’t want to dismiss people who are having symptoms of MCAS because I do believe they are definitely suffering from some sort of allergic condition -allergies, asthma, hives - all of which can exist together. Also anaphylaxis. It is incredibly debilitating and frightening to have these symptoms - I was so scared when I struggled to breathe due to allergies - I think it’s really important to get treated. What I was thinking is I don’t understand why all of these have been combined into a new condition.
Looking into it further, from an American website:
https://www.aaaai.org/conditions-and-treatments/related-conditions/mcas
“
IDIOPATHIC MAST CELL ACTIVATION SYNDROME
MCAS is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea. High levels of mast cell mediators are released during those episodes. The episodes respond to treatment with inhibitors or blockers of mast cell mediators. The episodes are called “idiopathic” which means that the mechanism is unknown - that is,
not caused by allergic antibody or secondary to other known conditions that activate normal mast cells.”
But do they actually check that no allergic antibody is produced? As far as I know, skin prick tests or anti body tests aren’t carried out (And found negative) to diagnose MCAS? I mean, I was diagnosed a few times with MCAS and no one checked whether or not I had antibodies or did any skin prick tests.
How are allergies diagnosed anyway? I’ve got hayfever on my record because I have a pollen allergy and my asthma gets really bad, I had no tests done - the fact I get symptoms is enough to say “allergy” for this particular thing. So why are similar / additional symptoms called MCAS and not allergies?
“
SYMPTOMS
The symptoms most consistent with anaphylaxis are:
• Heart related symptoms: rapid pulse (tachycardia), low blood pressure (hypotension) and passing out (syncope).
• Skin related symptoms: itching (pruritus),
hives (urticaria), swelling (
angioedema) and skin turning red (flushing).
• Lung related symptoms: wheezing, shortness of breath and harsh noise when breathing (stridor) that occurs with throat swelling.
• Gastrointestinal tract symptoms: diarrhea, nausea with vomiting and crampy abdominal pain.”
Then I looked up symptoms of a normal allergy. They are:
“Main allergy symptoms
Common symptoms of an allergic reaction include:
- sneezing and an itchy, runny or blocked nose (allergic rhinitis)
- itchy, red, watering eyes (conjunctivitis)
- wheezing, chest tightness, shortness of breath and a cough
- a raised, itchy, red rash (hives)
- swollen lips, tongue, eyes or face
- tummy pain, feeling sick, vomiting or diarrhoea
- dry, red and cracked skin”
And:
“Anaphylaxis usually develops suddenly and gets worse very quickly.
The symptoms include:
feeling lightheaded or faint
breathing difficulties – such as fast, shallow breathing
wheezing
a fast heartbeat
clammy skin
confusion and anxiety
collapsing or losing consciousness
There may also be other allergy symptoms, including an itchy, raised rash (hives); feeling or being sick; swelling (angioedema) or stomach pain.”
So reading that I thought, MCAS seems to describe, what we already know to be, an allergic reaction. So people who are described as having MCAS are having a lot of allergic reactions?! Am I missing something??
From the website, the treatment for MCAS seems to basically be:
Anti histamines, the over the counter ones you get online like Cetirizine or loratidine or prescription ones like Fexofenadine, which are already used as a maintenance treatment for allergies: lots of people in the Asthma U.K. Facebook group reported taking these, some were taking a combination of them; every day even, to control their allergies.
I know some diagnosed with MCAS are taking Sodium Cromulate, to help with reactions in the gut. This is also already prescribed for food allergies, as far as I’m aware.
The website then also says to combine this with H2 blockers for the stomach like Famotidine, Ranitidine. (This is used for people with acid reflux).
Also, Montelukast to reduce wheezing (again, already an asthma treatment..)
steroids for wheezing, (already is often prescribed for severe asthma), edema, hives (again, pretty sure it’s already prescribed if needed)
Omalizumab (Xolair), I heard about this drug a long time ago for treatment of very severe allergic asthma! And also it’s use for people who have hives that are severe that don’t respond to other things. The American website says this can help reduce anaphylaxis episodes.
Epi-pen which is already used for anaphylaxis.
The way I see it, the condition called MCAS is basically using meds that are already used for allergies (with the exception of ranitidine and famotidine), and then just re-using them and saying it’s for MCAS?
With ranitidine and Famotodine, they reduce stomach acid by reducing histamine in the stomach. Is there any evidence (proper trials) that these meds reduce symptoms of stomach related allergy symptoms? There may be, which is why I’m asking, but I haven’t come across any so far. So far it seems to be just physicians prescribing it because they say it helps their other patients.. very often complex patients.
Edited to add: from some more searching, it seems that Ranitidine (Zantac) is prescribed for those who have routine allergies too - eg I found accounts of people visiting ER being prescribed it after a cashew allergy, and for other allergies. So again, it is prescribed in some cases for general allergies.
————-
Just to confuse things, ME-Pedia has a symptom list for MCAS which includes things which don’t really seem to have anything to do with allergies, such as:
As well as hot flashes and high or low blood pressure...!
According to ME-pedia:
“Diagnosis
MCAS can be difficult to diagnose as the cause of the syndrome is still considered to be unknown. In 2010, a criteria for diagnosing MCAS was proposed by Dr. Cem Akin and colleagues. These criteria suggest that two or more organ systems must be affected; this can include gastrointestinal,
cardiovascular, skin, or respiratory. If given anti-histamine or mast cell therapy, the patient's symptoms must improve. Thirdly, the patient should be tested for serum
tryptase, an enzymesecreted by mast cells during the peak of a symptomatic episode. If tryptase is >15ng/mL, the patient may have MCAS. Urine and blood tests should be collected more than once to confirm a positive diagnosis. Prostaglandin and histamine levels can be also be tested.
[3]”
The other American site also mentions: “Increases in serum mast cell tryptase and in urine levels of N-methylhistamine, 11B -Prostaglandin F2α (11B-PGF2α) and/or Leukotriene E4 (LTE4) are the only useful tests in diagnosis of MCAS.”
Don’t know about tryptase but again wouldn’t this occur in allergies though?
I looked up Afrin and he seems to think underlying mast cell issues relate to / explain so many chronic diseases. Whenever I hear that sort of thing I always hear alarm bells ringing in my head..
And still largely confused. What is it that the proponents of MCAS are saying? There’s a new condition where people have lots of allergies, but it can’t actually be fitted into “asthma / hives / allergies etc” and you don’t see an immunologist and do treatment as you normally would? But you’d use the same medications anyway? With the addition of Ranitidine? It doesn’t make sense to me.
Edited to condense a paragraph.
Edited again to add further info about Ranitidine.
