Mast cell activation syndrome - does anyone suffer with this?

[ACheesePaniniJustForMeeee]

Can I ask you what are/were your symptoms?

I have not felt well for many years and am beginning to wonder if I may have this?

I’m afraid I can’t help you myself, but I’m following the thread as I’m in a similar position! I’ve been on antihistamines my whole life due to eczema and I still get year-round hayfever along with other symptoms, and I have some of the common comorbid conditions too; I’m starting to think MCAS might be the answer.

What symptoms do you have, OP? It might help people point you in the right direction.

Thank you badskinkid

Sorry you are struggling with some issues too.

I've googled and screenshot a quick pic of MCAS symptoms, I've highlighted the ones which affect me the most. I also struggle with an almost daily runny nose and a mucus feeling in my throat which I'm always trying to clear, stinging eyes and a sore raspy feeling in my throat. My tongue gets very sore too. I often feel as though I'm coming down with a cold but it never comes to anything. My gut issues are daily too and I'm constantly knackered despite getting a good night's sleep every night.

All of these symptoms have been going on for years and years.

My bloods are fine and endless gastro tests have come up with no answer to my daily gut issues either.

I suspect I have this as I'm such an allergic person and have constant issues with one thing or another. I take a Fexofenadine 120mg each morning which, thankfully, has helped my eye allergy as it was leading to corneal damage. Other than that, I just try to cope with the symptoms. I can't afford to pay for a private assessment and the NHS are generally clueless with even common illnesses so there's no hope there.

The problem is that this list covers so many different things that many of us can self diagnose, me included! Please get proper medical advice because they could also indicate serious medical issues though conversely overlap with minor self limiting things plus localised issues (I’m allergic to feathers and cats for instance, took me months after moving in with my now dh to realise why I felt grotty, thought it was post covid stuff!)

My first port of call has always been to seek medical advice first. I have spoken to GPs many times over the years regarding these issues. My gastro issues are all handled via my gastroenterologist and I have had many, many gastro tests but all the tests have returned as normal.

I am asking out of desperation due to the fact no medical doctor seems to be able to help.

I think I may need to try an antihistamine too, see if that offers any relief. I would love to see someone privately but sadly can not afford it either.

I don't have a diagnosis,but I'm being treated as if I have it. I have 180mg Fexofenadine and 2x 20mg Famotidine every day. I don't get wheezy very often, but I do get more skin symptoms.

I've identified main triggers and avoid as much as I can. Wheat, pine and eggs are easy enough, but heat is not!

Oh and I take quercetin supplements as well after reading they might help. Could be worth looking into.

Such a helpful thread as I am querying this too. Always had IBS and stuffy blocked nose continuously as well as usual hayfever. Over the past couple of years ive started getting hives and skin rashes and flushing as well. Doctors not interested. I thought it might br autoimmune but not sure. Currently in a flare and taking 2x fexofenadine a day but still struggling with the rashes and heat/cold/temperature changes are a big trigger.