Mast Cell Activation Syndrome (MCAS) - discussion thread

Milk doesn't contain gluten.

The study by Rowe is about milk protein but it looks to be extremely badly done. It is difficult to know how accurate the report is but apparently there is no test for milk protein intolerance so it was just diagnosed on hunch. People diagnosed on hunch were better after stopping milk. This is the sort of pseudoresearh that we spend most of our time trying to bring to a halt - PACE, SMILE, whatever. We cannot complain about bias in BPS studies unless we are fully aware just how much it affects all studies.

 

Agreed, Typo - I meant to quote milk ( lactose) and gluten. Apologies!

 

But lactose is something different again - not milk protein as in the Rowe study.
We need some proper biology here.

 

which study by Rowe about food proteins? Is there a link to that I missed?

 

Histamine Intolerance and MCAS seem to be used interchangeably but as far as I know there is a difference. I wonder if this is leading to people being misdiagnosed with MCAS (assuming MCAS is a genuinine clinical entity in itself).

 

I am not clear that either of these are meaningful?
A number of foods stimulate histamine release in the GI tract - strawberries and seafood I think most often. Histamine is otherwise a normal mediator in most tissues. MCAS seems to be a category so ill-defined that it has no clinical value.

 

As far as I know some people report sensitivity or allergic reactions to food with high levels of histamine. There has been little research on it but the current findings are somewhat contradictory.

 

I thought it was that the foods stimulated release of histamine. Do any foods actually contain a lot of histamine? Histamine wouldn't produce an allergic reaction as such. Allergy releases histamine through binding of IgE antibodies but for foods I think the histamine release is based on a simpler chemical interaction. But the internet seems to be in total confusion - many of the top hits being contradictory with each other.

 

Medscape: Does Mast Cell Activation Syndrome Underlie Multiple Ills?

https://www.medscape.com/viewarticl...-underlie-multiple-ills-2024a1000isk?form=fpf

Depending on one's perspective, "mast cell activation syndrome (MCAS)" is either a relatively rare, narrowly defined severe allergic condition or a vastly under-recognized underlying cause of multiple chronic inflammatory conditions that affect roughly 17% of the entire population.

Inappropriate activation of mast cells — now termed mast cell activation disease (MCAD) — has long been known to underlie allergic symptoms and inflammation, and far less commonly, neoplasias such as mastocytosis. The concept of chronic, persistent MCAS associated with aberrant growth and dystrophism is more recent, emerging only in the last couple of decades as a separate entity under the MCAD heading.

Observational studies and clinical experience have linked signs and symptoms of MCAS with other inflammatory chronic conditions such as hypermobile Ehlers-Danlos Syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis/chronic fatigue syndrome, and recently, long COVID. However, those conditions themselves are diagnostically challenging, and as yet there is no proof of causation.

The idea that MCAS is the entity — or at least, a key one — at the center of "a confoundingly, extraordinarily heterogeneous chronic multisystem polymorbidity" was the theme of a recent 4-day meeting of a professional group informally dubbed "Masterminds." Since their first meeting in 2018, the group has grown from about 35 to nearly 650 multidisciplinary professionals.

(...)

During the meeting, Afrin acknowledged that the broader view risks overdiagnosis of MCAS. However, he also referenced Occam's razor, the principle that the simplest explanation is probably the best one. "Which scenario is more likely? Multiple diagnoses and problems that are all independent of each other vs one diagnosis that's biologically capable of causing most or all of the findings, ie, the simplest solution even if it's not the most immediately obvious solution?"

He told Medscape Medical News, "Do we have any proof that MCAS is what's underlying hypermobile Ehlers Danlos or POTS or chronic fatigue? No, we don't have any proof, not because anybody has done studies that have shown there to be no connection but simply because we're so early in our awareness that the disease even exists that the necessary studies haven't even been done yet."​

 

Actually wrong. There are studies that show no connection.
And the one thing that they make clear is that it is at present all speculation.