Mast Cell Activation Syndrome (MCAS) - discussion thread

You mentioned that you have worked closely with these physicians—does that include Dr. Rowe? What’s your experience with him been, and what’s your criticism of him specifically? (I’m not as familiar with the UK docs and I’ll leave Afrin aside for now.)

 

I do not know Dr Rowe, other than as someone that Dr Grahame often quoted. Rowe and colleagues wrote a paper in 1999 suggesting a link between EDS and chronic fatigue which may be the basis of the whole problem. The paper is a small case series and on close inspection the evidence looks pretty unconvincing anyway. (Even I have piezogenic papules.) Since then various others have done inadequately controlled studies generating a belief that there is a link between EDS and chronic fatigue and now ME/CFS. I have seen the emergence of this in the UK. It is conceivable that there is something real underlying this but the literature simply perpetuates a meme and the few population studies suggest there is probably nothing to it.

 

Moved post
@Jonathan Edwards

What is your opinion on mastocytosis? My understanding is that it is different to MCAS. I've read that mastocytosis can be aggravated by over exertion, changes in temperature etc.

 

I do not know much about mastocytosis other than that it is uncommon, is associated with an increased number of mast cells and is quite distinct from MCAS. I think it highly likely that symptoms in mastocytosis would be increased with exercise or cold or heat because these are stimuli that can alter mast cell stability in all of us. Chilblains involve mast cell activation by cold. A scald involves mast cell activation by heat - which is why it is a bit like a bee sting. A blister involves mast cell activation by rubbing. So no surprises there.

 

GI motility testing with a wireless capsule reveals significant GI dysmotility in people with POTS, EDS, MCAS and/or autoimmunity.

https://twitter.com/user/status/1324834232091377664

 

I had a phase in which I had similar issues, probably triggered by food poisoning. It took years but my GI issues and allergic symptoms are almost completely gone. But I'm still lactose intolerant. I think the undetected lactose intolerance was one of the contributing factors for chronically elevated inflammation levels. Just because one MD did an outdated test and convinced me that it couldn't be lactose intolerance, so I stopped my diet. During my CFS, another MD made an H2 test and it was unequivocally confirmed then. Maybe it was just the result of undetected allergies and the inflammation due to lactose after all.

Regarding MCAS, I read some folks mentioning salicylates and benzoates in this context. I still believe that benzoates triggered the loss of consciousness during one specific incident where no other triggers were given. This might be completely unrelated though because benzoates also trigger worsening in neuromuscular diseases and salicylate intolerance is a separate thing but I wonder if anyone actually looked into it.

 

Covid 19 Vaccination and Mast Cell Disorders

A statement on covid 19 vaccinations and mast cell disorders was issued on 29th January by the medical advisers to the UK Mastocytosis Support Group.

https://ukmasto.org/?ddownload=1080...d2Dtng3bGchO7iFE8Lp0qgRx6MJtd8uv8ijOUyD6K-xVA


eta: added word vaccination in line 2

 

I've been assessed recently by a doctor at a London hospital for my bladder problems which worsened in 2017. I've had repeated bouts of UTI symptoms but with negative culture. Also problems with hesitation, slow bladder emptying, frequent urination etc

The doctor in London thinks it is possible that my symptoms are as a result of mast cell issues. He has recommended lowering histamine in my diet, initially avoiding histamine liberating foods.

He said that his team has seen hundreds of long covid patients who have similar bladder problems. He said that he has had a good deal of success treating with mast cell stabilisers and modifying diet.

Within a few days of changing the diet my GI symptoms, which have also been a long-standing problem, have improved.

For a few years now I have been using a heart rate monitor to help with pacing. Although I am still having significant orthostatic increases in heart rate, my resting heart rate has decreased.

I've only just started on the first of the medications, famotidine, so it is not clear what effect, if any, that will have.

Unfortunately the bladder symptoms remain, and I am booked in for a cystoscopy.

I was warned that it can take a good while to see the benefits of change in diet and mast cell stabilizers.

The worsening of my symptoms since 2017, especially orthostatic symptoms, pain, bladder symptoms, and GI symptoms have significantly impacted on my quality of life.

Whatever the underlying mechanism, medication for orthostatic symptoms has helped blunt the tachycardia, and the adrenaline surges, improving quality of life.

It will be interesting to see if changing diet and medication affects my bladder symptoms and pain and continues to affect my GI symptoms.

 

List of histamine liberating and low histamine foods that I was advised to refer to.

https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

Edited to amend link.

 

Good to see this feedback and to see the comorbidities unravelling.... albeit slowly!

 

Useful list, thanks for sharing.

I was interested to see a number of dishes that trigger a reaction in me seem to contain a number of ingredients that are high in histamine or are liberators.

Due to other problems I ended up eating very simple dishes basic ingredients and that has definitely made life easier, if a little more boring.

 

It seems as if I was in the histamine equivalent of rolling PEM before reducing histamine in my diet. It is now much easier to work out foods that are causing a reaction. Hopefully my "histamine bucket" is getting a little less full.

@Invisible Woman yes, it is a more boring diet especially as a vegetarian, but slowly getting used to it.

 

Then would it be fair to say that low histamine diet has no effect on the bladder problem?

And secondly, if it’s supposed to take a good while, do you think that there are chances that this problem has a great chance to improve on its own or due to other factors, or if it’s not resolved, the doctor has good chances to believe you were not as compliant onyour diet therefore it is your fault?

I am very weary of doctor saying that it will take a few months to get better while recommending a certain treatment. There are exceptions to this, such as hydroxychloroquine for rheumatology problems, but especially when it comes to dietary changes, come on!

 

I began using the SIGHI diet list noted by @Daisy in #29. In my case it was to try to prevent a recurrence of an anaphylactic reaction and angioedema probably related to mast cell issues. It helped to stabilise things quite well, no recurrences and I gradually expanded food choices again but have had a recent set back.

After having the first AZ jab (less than 2 hours), I developed a throat angioedema, frightening but controllable with antihistamines, clenching my epipens in the other hand in case of need. It's recurred quite a few times, usually related to high histamine ingestion. I'm back to being more careful about what I eat. My GP called it a mast cell reaction and says he has 3 MCAS patients to vaccinate.

I was interested in the observations on the diet's relation to orthostatic issues. I too have quite a severe OI but had a long spell where my resting heart rate dropped. I need to look back and check if that was when I was most strict with the diet. It probably was time wise but I wasn't looking for a correlation. Currently my resting HR is way up but that is not surprising.

 

@Milo

Thanks for your comments. I don't think I was clear enough in my initial post. The thread is about mast cells so I concentrated on that aspect as group members may not be aware of the interaction between bladder issues and mast cells.

My bladder problems likely have more than one cause. The standard test for bladder infection is not adequate for picking up infection in the bladder wall. Hence cystoscopy & biopsy.

Mast cell issues may also be a part of the reason for my symptoms, hence the change in diet and mast cell stabilizer medication.

People with mast cell problems refer to their "histamine bucket". When the bucket is full and overflowing they are more symptomatic. However it is often a slow job reducing the histamine in the body.

Over the past 3 years my bladder problems have been getting worse not better and I certainly don't think it is going to improve on its own. When it flares it it very unpleasant especially on top of severe M.E. My GP has washed her hands with the issue saying she can't do anything because my micro biology always comes back negative.

I certainly don't think the specialist doctor will blame me for non-compliance if my symptoms do not improve. He was one of the most patient focused and kindest doctors I have spoken to all the years that I have had M.E.

This YouTube video is worth a watch for anybody interested in chronic bladder problems, hypermobility, mast cells.

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

 

@Binkie4

So sorry you had such a scary time with the vaccine.

With regard to histamine ingestion you describe a pattern that I have seen others describe. It does seem that if people who are sensitive reduce histaminein the diet they can sometimes then reintroduce some high histamine foods.

But if they reintroduce too much a flare is triggered as their "histamine bucket" overflows.

I am intrigued to see how many other symptoms are going to be affected by reducing histamine in my diet. My skin problems have have worsened over the past few years, at times feeling as if I have sunburn, but with no visible signs.

The reduction in histamine in my diet does not seem to have reduced my orthostatic tachycardia, but it does seem to have reduced my resting heart rate.

Prior to reducing histamine in my diet there were days when I was convinced my ivabradine (which I take to control tachycardia) just wasn't working properly. My heart was racing sitting in bed doing nothing. But this could have been a histamine reaction to something I'd eaten.

It is early days but certainly worth exploring I think.

I hope that your symptoms are more stable now.

 

This looks like nonsense to me.

I appreciate that it is fair that members should post stuff they think is interesting but as a science-based forum I think this stuff needs to be looked at critically.

From what I have seen so far all this stuff about histamine and diets is nonsense from a science point of view* and not supported by any meaningful evidence. Doctors who say that they 'are getting good results' with treatments by and large are best avoided. Medicine used to work like that before we actually knew whether things worked and had some understanding. It is not acceptable practice now.

*Edit: histamine based reactions to strawberries and seafood are well recognised, as are true allergies but the idea of a 'histamine bucket' makes no sense as far as I can see. This all looks like making money out of gullibility.

 

@Jonathan Edwards

As I said a "histamine bucket" is simply how some patients refer to the way that they manage their symptoms.

The doctor I'm seeing is NHS, although of course others in this field may be preying on vulnerable people, as they do on those with M.E.

I'd much rather try this approach than that of my GP, which is doing nothing in the face of years of distressing symptoms which have a significant effect on already compromised function.

It will be interesting to see if the cystoscopy finds any infection.

 

I'm new to this too. A recent summary of research is here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463562/

As recommended by the consultant I am taking over-the-counter antihistamines. But I have been advised that they are not enough on their own so have also been prescribed medication that works as mast cell stabilizers.