Anyone diagnosed with Mast cell Activation Syndrome?

[Chancery]

I couldn't think where to ask this so thought I'd try here, since the condition has gut and rash issues attached. Because of problems I've been having recently, I suspected I might have heart failure. I've made an appointment with my doc for this Thurs, but last night I discovered Mast Cell Activation Syndrome and my current symptoms fit it even better than heart failure. Unfortunately it's not, currently, a broadly accepted diagnosis with doctors, which makes me very anxious about broaching it, but I wondered if anyone has ever had it or been diagnosed with it and how you got on with docs vis a vis it being taken seriously?

[Penel]

Hello Chancery

Perhaps just hang on until Thursday and give google a rest?

Did you try cutting out gluten to see if it helps?

Looking up the Mast Cell Syndrome, it looks like another possible food related problem. You could always try a low histamine diet for a while (?).

[Chancery in reply to Penel]

I'm afraid that's a bit of a counsel of perfection, Penel. I have so many things wrong with me I need to be a little selective in what I tell the doc. If I don't have some broad idea of what I'm going to see him about then I'll come away with tablets for fluid retention, which is not helpful. When you have acid reflux, bloating, oedema, urticaria, flushing, disrupted temperature regulation, facial burning and itching, pruritis, dry eyes and mouth, muscle pain, joint pain, breathlessness, depression (whisper it) and tendonitis, to name but a few - it kind of leaves you wide open to the psychosomatic nutcase diagnosis. I can't possibly cover all that in ten minutes. If I make appointments for all of it separately I'll definitely get dismissed as a psychosomatic nutcase. It's a no-win situation.

I'm just trying to get some kind of substantiation for broaching a 'difficult' potential diagnosis which you've highlighted sounds exactly like something a hypochondriac would dredge up from Dr Google.

[Penel in reply to Chancery]

It’s certainly a tough one Chancery. Having a look at what’s on HU, there have been several queries on different sites, involving various autoimmune disorders. I don’t know if you’ve seen them or not, perhaps there may be something of use to you.

healthunlocked.com/search/p...

I hope you can sort out something at your next appointment.

[Chancery in reply to Penel]

Yeah, that was the first thing I did, before I posted, to see if it had been discussed elsewhere. I was hopeful there might be a forum but I don't know if it's too rare or too new. I've read through all the discussions but there is precious little there, hence my 'fishing' posts. I'm seeing him tomorrow and I have done what all doctors love - made a list of my symptoms PLUS printed out stuff from the internet. I can hear his heart breaking from here, but I really do not know what else to do. It seems like such a good fit I can't just ignore it.

While I was searching through my (sketchy) medical diary I discovered I had been complaining about some of the things I thought were recent since 2015 and things like my urticaria go back to my 30s. Well, what will be will be, I can only try...

[WobblyCaroline]

Sounds like something in your diet is wrong. I have a lot of those symptoms from dairy

[Chancery in reply to WobblyCaroline]

Hi Caroline. If it IS a mast cell issue then diet won't really make a difference, per se, other than for any triggers I might have. Previous to discovering this I had already overhauled my diet and removed loads of stuff, so it's quite sound now. Interestingly, though, as part of this I seem to have developed lactose intolerance. I've had issues with milk in the past but they've always resolved themselves after improving my diet or doing FODMAPS, and they were never clear cut, as in 'Is this really just indigestion or a real intolerance?'. This time however, it's not standing for it. I'm down to 1% milk (so as not to irritate my oesophagitis) but it is still very voluble in protesting when I use it (annoying as I bought 4 pts!). I don't have the same problems with lactose free milk or nut milks, so it appears to be quite a clear cut thing.

[Frodo]

I think it likely my son has this, but no idea how to get him treatment. He's had a skin prick test for specific allergies which showed nothing and is on daily anti histamines, which don't really work on his symptoms, via a dermatologist. You might start by asking to see a dermatologist re. the urticaria and itching.

I think it's a good idea to take a short list of symptoms the GP can quickly read rather than explaining each one verbally as describing each one will take up a whole appointment, as you point out. I would hold back on the research initially.

[Chancery in reply to Frodo]

Hi Frodo, it might interest you that I happened to see allergy testing on one of the sites I visited (possibly the Canadian Mastocytosis (sp?) site) and they said allergy testing doesn't work for people with Mast Cell issues as it is IgE (I think) they test and mast cell diseases don't produce elevated IgE, so if your son DID have this problem then allergy testing would be negative for him. That wouldn't mean he didn't have trigger foods, only that the testing isn't designed to pick up overactive mast cells. It's a histamine reaction rather than a classical allergic one. I only read it once so forgive any scientific inaccuracies here!

I saw my doc today and he was pleasantly unfazed by me bringing a list of symptoms. I didn't expect him to read them and I told him so (he kept them for perusal later), I just gave him broad lines about my constant drug reactions and the oedema and breathlessness/sinus problems and the rashes, and he asked me what I wanted to do. I said I thought a referral to an immunologist maybe and he told me we "didn't have one here". I wasn't sure if he meant Scotland or Edinburgh, but he said there had been talk of getting one so he was going to find out, and failing that, who would deal with mast cell issues. He was completely upfront about never having heard of it and of never having seen a patient with mast cell issues. It's one of the things I like about him, he never pretends to knowledge he doesn't have and never gets antsy about his doctor's credentials being threatened.

So first hurdle crossed. He didn't laugh at me and hopefully I MIGHT get an immunologist. Failing that I think he said it might be a rheumatologist - why they would deal with it I don't know. The down side to all of this, of course, is it's a 'new' disease and some older doctors don't believe in it. If I get a middle aged consultant then I might be in trouble! But fingers crossed.