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.

 

As always, we start with confusion, opinion, and a determined effort to not accept the possibility and to treat. What are the long-term outcomes of not treating or diagnosing Mast Cell we don't know.

My personal experience is that I have issues from time to time with rashes and skin complaints but my Son had rashes during viral periods that were different to my other two older children. These rashes increased with certain foods, exercise, sun/fresh air, grass etc but were random.

When my son became very sick and was then diagnosed as having somatic CFS and given GET, these rashes became more violent, along with all sorts of symptoms we all recognise.

I looked somatic CFS and found a confusing mish mash of nonsensical garbage that made no sense to what I saw in my son, yet drs thought this was the right diagnosis for him and dismissed all his symptoms.

I then began to look up the charities and found AFME children's groups, where I soon became aware of these patterns in other children - Viral symptoms, rashes, gut issues and the connection with EDS and POTS.

It was not until Angus was diagnosed with celiac disease, that I was introduced to Mast Cell.

I became aware of celiac, diabetes, hEDS, EDS, POTS and autoimmune connection for mast cell and histamine intolerances.

Over the last 10 years and belonging to many groups who have parents struggling with some awful situations, the pattern of PEM, Mast cell/histamine, Viral symptoms, rashes, gut issues and the connection with EDS and POTS has remained steadfast. This reaches into the thousands of hidden children not treated by NHS.

Those that get treatment for Mast Cell from private means, mostly do much better than those that don't. With some altering their diet also get some good results. The rule of thumb is give low histamine foods a go and record the differences you find. I have to say the Visable app makes this a lot easier. If you see a positive change find some support and help.

Those that go into hospital and are recognised as needing treatment for Mast Cell do better, until the psychologists come in and take the treatment away. They then flounder, but the connection is never made as PEM, Mast cell and POTS are difficult to tell apart when dealing with the most severe. The times I have been left in despair, as yet again you can point out the simple fact patients came in walking and certain treatments made a small improvement and when it was stopped patients became so unwell they could no longer tolerate sitting up in bed or food. Somehow the professionals think their knowledge and understanding of science and the PACE trial Trump their own eyes and charts.


However those that are treated for POTS, Mast Cell and PEM is understood again do much better, so this is also worth looking at more deeply, regardless of the opinion of doctors? lessening suffering has to be acknowledged as a good thing? Sadly because of the attitudes of those that dismiss out of hand Mast cell, instead at looking at the evidence through the lived experience cause so much stigma it is difficult to get the understanding needed.


I do not understand why people are not tested for mast cell or treated for it, surely it is worth it to stop the suffering we hear of on a daily basis? However as we know the NHS drs do not do the correctly tested or in the correct way and it is never timely. If more research into testing was put in, we would know a lot more, but again Mast Cell is dismissed. We should also look at the connections in menopause and during periods, as more women have ME and the issue of mast cell is more pronounced at these times, it may give us more clues on how to diagnose and treat.


Angus was given 1 histamine test which showed histamine intolerance and many skin prick tests where he reacted to everything. His prescribed mast cell treatment was denied him by his GP, as so many others have too. Do we look for the damage done to our hidden young people?

I have done the best I can with his diet and the over-the-counter products, which have undoubtably made a huge difference (I say huge, but even the most slight positive difference is welcomed) but I do wonder what his life would have been like if he had been given what was prescribed for him many years ago.

For all those that are still struggling/suffering and those who have lost their lives through ME and Mast cell I hang my head in the shame of it all. What is the harm of giving the prescribed medication, tracking the outcome to see if there is a positive reaction as we have.

The lived experence

https://www.youtube.com/watch?v=quDVFnP0HSI

 

That last part of your last para is a very interesting and pertinent question


I think most who had/have any kind of science education/understanding assume this is what medicine and healthcare was based on (lots of ‘artsy only’ people are a bit different )

and probably us until we encountered what we have as many times as we have in order to convince us that basic clean observation of action—> consequences doesn’t happen in certain areas or where bigotry, ideology etc has been involved


I assumed for example the nonsense pace trial lying to us about harm would at least be logging the real outcomes on the GP system

ha ha ha. Instead the trial was about controlling what GPs were allowed to see


All these things are hard to unravel whilst data is gerrymandered by the human interpretation and political influence on the ‘data in’ before we even begin to think how many years of careful often quite scientific observations even if ‘on an individual/anecdotal level’ it takes for patients to be able to unravel from each other just to explain complex symptoms

 

It always confuses me, the whole tomato, strawberry, potato, pepper, thing, they are after all part of the deadly nightshade family... so you would expect a reaction by the mast cells? After all they are the warning signs, and we should start looking at them as such?


Can mast cells tell us something about ME and PEM? I believe they can and reading Professor Wirth latest research gives me hope. Understanding that he only looked at exercise makes me ponder on - would the outcome he finds also happen to those more severe after they have read a book or watched a film? If the SNOMED codes were used correctly and AI introduced, we could see a pattern emerge. Put mast cell on the visable app would we see a pattern emerge there too? Why are we not crying out for the NHS to support the app? Talking to many that use this app, I think it would show us a great deal. Perhaps the connection between ME - PEM - POTS/OI - Mast Cell. It would at least give us an unbiased opinion and could demonstrate the link or not of - ME, PEM, POTS and Mast Cell. It would need a great deal of thinking and making sure the tracking is not too taxing for those with ME.


It was Wessley who first found that gluten/celiac was an issue in a subset of those with ME, yet it is rarely mentioned, and we do not look at lactose. So why do we not ask more questions and find the data from SNOMED codes and explore the lived experience.


I strongly disagree that it is of no clinical value, as we do not know how many people with ME die from anaphylactic shock, mast cell or leukemia. Sadly, no one with ME is given the right respect or testing. Getting to know the rashes would be helpful and the writing test on skin. At the end of the day, we need to look and ask questions before we can find the answers. We cannot provide answers on thin air and no data. The fact we never look, is the sad reality.


I only have my experience and that is woefully inadequate but asking questions like:


When in a PEM state/crash does the skin become inflamed, what do they look like have you got a picture, can you get a lollypop stick and leave a lasting line when you slowly and lightly drag it down the area? This is not difficult is it, neither is it unreasonable to ask a GP to do it, is it?

 

I think we need the data first and the SNOMED codes could help us there. We should as advocates know and understand them, ask them to be user friendly and accurate.

 

Strawberry belongs to rosaceae rather than solanaceae. I don't know of any reason why either family should particularly lead to a histamine response. I don't know what is special about strawberries in that regard.

Mast cells are in nearly all tissues, just as nerves and red blood cells are. They are involved in pretty much all diseases just as nerves and red blood cells are. Skin is not inflamed in PEM in general. Some people with ME/CFS will have allergies but just talking of 'Mast Cell' doesn't get us anywhere. The Mast Cell Activation Syndrome proposed by Afrin seems to be either a rare genetic disorder that is unlikely to be relevant or too vague a concept to be useful.

 

You are right and patients do believe that healthcare is based on patients experence/symptoms. We should be able to look at other complex situations and conditions and work out what they mean? Diabetes, asthma, psoriasis, viral and all other infections show us the same as we find in ME, subtypes and mast cell involvement. There should be no debate, but looking for how they all match, what research could be joined up thinking and how we progress our education and knowledge on what we know as a collective.

Will AI help us in the regard to data and opinion... the debate feature on an app seems a fun way to find out, well it has been making me giggle anyway.

 

How do you know skin is not inflamed in PEM in general? Has anyone asked the question while either in the GPs office or in research? Do people look for any of the changes to the skin for any reason while in a PEM state? Has anyone looked at the most severe the answer will be no.

All red fruits seem to have the highest skin reaction and you ask anyone who has shingles or going through menopause, what skin reactions they have and you will find lots of questions that need to be answered, not just in ME.

The connection of bone marrow, B cells and Jo Cambridge's work, springs to mind that there was something in her work that flags up a reminder to look at her work again, what questions should we be asking. Have no idea but Dr Bell also has something in his work too. He is not a researcher but he has seen so many in his log career and so does Nancy Klimas and who also does do research.

There is another thing we must remember is the reaction of pain in the gut. Many describe it as flames or a man (and yes it is always a man) wearing a spiked hat running and jumping up and down in their gut. We don't often think about this, because we can see the skin, it is something we can ask about. However listening to those who are in hospitalised through severe ME, how they explain the pain that they feel as the feed goes down, could hold some clues? What is contained in the feed and what is the food contained in, Nestle produce the feed, so not good? What are the tubes made from and what reactions do they evoke and what can we learn from their experence?

Lastly is the coroner - what do they look for, not much. What should they look for?

These are some of the questions all those involved in ME should be asking, not stating but asking.