Might I have Mastocytosis rather than MCAS?

[Chancery]

Hi, I experienced a very strange phenomenon last night that I've never had before and it's made me question my diagnosis of MCAS. I had a reheated (pretty old!) home-made cauliflower cheese. I had had it the night before too and it had caused horrendous bloating, which I'm used to (I have IBS) but I had also had humous that evening so felt that just the cauli cheese on its own would be better, pain-wise, which it was.

However, shortly after eating it I bloated up, as expected -'pregnant' but not in pain, which is the best I can hope for - but I suddenly started feeling like I needed to pee all the time. Long story short, within half an hour I was peeing every ten minutes and having full-on cramps etc.

Now I have had unexplained UTIs on and off for forever - at least 2-3 months. I had to have 3 courses of antibiotics because they wouldn't clear up. They were full on 'infections', severe pain, hardly able to get out the house variety, even bleeding. Interestingly though, when I was tested before the last lot of antibiotics, it came back as negative but as the last lot did the trick I just assumed that was becasue there was so many antibiotics in my system, and it's not unusual for the tests to come back negative after several courses.

Anyway, I was panicking last night, because I'm worn out with these incessant UTIs, and don't know what's causing them, so I took D-mannose, some quercetin because I wondered if this was maybe histamine irritation, and then just before bed I took ibuprofen & paracetamol and then I gave in and took an Amoxicillin (I had a spare packet in the house).

In bed, I noticed that when I was getting up to pee, about every half hour, that it wasn't hurting as much. I put it down to the painkillers, but it stayed fairly calm right through the night and by morning what looked like a fully-fledged UTI was greatly reduced to just slightly twitchy and mildly unhappy. On ONE antibiotic tablet.

To me, this suggests this UTI was not an infection but actually CAUSED by the reheated cauli cheese. I have also been experiencing full body itching after eating. Normally I only get this with temperature changes outdoors, and I've also had odd flushing episodes early in the morning, after eating, when normally my flushing occurs in the evenings and in bed at night.

The full body itching after eating is new, as is this UTI business.

My questions are:

1. Has anyone else experienced an apparent UTI with foods like this? DId yours clear up and come on as suddenly?

2. Is this worsening of my symptoms an indication that I might have Mastocytosis rather than MCAS? If so, is it worth going to a doctor about it? Would I gain anything? I HATE going to doctors, especially with these rarer 'vague' kinds of ailments. But the UTI thing has become a real problem and I'm not sure how to treat it.

3. Does this sound like being more an aggravated MCAS issue or a histamine intolerance issue than Mastocytosis?

I should just say that predating this, I've had facial skin problems for months beforehand. I've had these for years now (since 2018/19, I think) but they flared up again a couple of months ago. I have itchy skin round my eyes and occasionally on my nipple and round my belly button. I get no plaques, just redness and intense burning itchiness. I also have longstanding vaginal irritation which I've had consistently for the same time I've had the eye irritation, but it, ironically has been slightly better recently! The only medication which works even vaguely for both these is hydrocortisone, but it just relieves the symptoms, it never cures them.

Any insight anyone can give me as to whether this is just a MCAS flare-up or whether it might be a sign of MASTOCYTOSIS, I'd be really grateful. Thanks!

P.S. I'd also like to hear from anyone who has 'faux' UTIs from these conditions and what, if anything, helps with them.

[Jess-UKMasto Administrator]

Hi Chancery, I'm so sorry to hear about this distressing episode! I don't see anything in what you describe that would point towards mastocytosis over MCAS. They both can cause episodic "attacks" with multiple symptoms. I have heard particularly from parents about them noticing a lot of urination during these episodes sometimes. There is a condition you may want to read about called interstitial cystitis that happens in people with and without mast cell disorders, but is common in mast cell disorders, where there is bladder pain and frequency and urgency but no infection. Sometimes people find that an antihistamine can be a helpful part of that treatment.

I would be hesitant to reach the conclusion that the antibiotic was necessarily the thing that helped during your episode because you took so many different things at once. From the way you describe it it would be difficult to discern which intervention was effective.

There is a condition called vulvodynia that can occur alongside interstitial cystitis, where the tissue of the vulva can hurt as well. (When you said vaginal irritation I'm guessing you mean the outside tissue, not inside.) That may or may not be what you were experiencing but having a name to look into may be helpful to see whether that sounds like something to talk with a doctor about. Using steroids regularly on vulvar tissue can thin the tissue, which is not a good thing to have happen.

I'm really sorry you're having these symptoms which can be really distressing.

Also want to mention that some people tolerate ibuprofen fine, but others find it causes mast cells to get upset. Something to just think about. If it is ok for you then it's ok!

Very best,

Jess

[Chancery in reply to Jess-UKMasto]

Thanks, Jess. No, I don't think it was the antibiotic that helped - quite the opposite. That's what alerted me that something else might be going on. One single dose of antibiotic would be unlikely to calm a real infection let alone 'cure' it. I read that evening, on a histamine website, that ABs can act as anti-inflammatories, which is why some people can find relief with them even when there is no infection. That would certainly account for what I have been experiencing of recent months, where they were damping it down but not clearing it up properly. It's possible that that one tablet I took, combined with ibuprofen and D-mannose, even the quercetin, was enough to give the result I got as I sort of nuked it with anti-inflammatories.

Notably, it's back again today. Very sore, but not, so far, cramping up - just a painful urethra and needing to pee all the time.

As regards the other vaginal issue, I had previously dismissed Vulvodynia, since I didn't think of it as pain, but it is pain, and itching and irritation and I see, rereading the symptoms that yes, it would fit. However, looking at the treatments - antidepressants and anti-epileptics - I wouldn't be keen on using either of those, and my MCAS wouldn't be dead keen on them either. But good to know what it actually is!

Ibuprofen isn't likely to be the culprit simply becasue I'm sensitive to it and very seldom take it. I can only take one tablet a day and only for two days running. By then it's already trashing my gut!

I think I might try taking anti-histamines, much as I hate them (they make me tired and lethargic and they never seem to help much), just to see if they help any.

Just as an aside, can I ask what sort of symptoms WOULD be defining or suggestive of Mastocytosis (systemic) as opposed to MCAS? How do people - and doctors - know when to suspect Masto as opposed to MCAS?

[Jess-UKMasto Administrator in reply to Chancery]

Hi Chancery, good question about when to suspect mastocytosis vs MCAS. It isn't always obvious but a raised tryptase at baseline is the most obvious and easy marker (though not everyone with mastocytosis has raised tryptase so this would not catch everyone). If your tryptase is over 20 ng/ml that would lead doctors to consider a systemic mastocytosis diagnosis. There is also cutaneous mastocytosis (skin only), which is rare in adults, but in that case you'd have the skin lesions that are the hallmark of that condition. (Google Urticaria Pigmentosa in adults for photos-- though now it's officially called maculopapular cutaneous mastocytosis.) If you were to have any of the signs of more advanced mastocytosis (enlarged spleen or liver, lymphadenopathy, weight loss from diarrhoea, bone breaks due to osteoporosis when you aren't older) in the context of mast cell mediator symptoms that could also raise a red flag, but there can also be other reasons for those. But MCAS and mastocytosis folks both can have miserable symptoms of mast cell mediators being released inappropriately.

[Chancery in reply to Jess-UKMasto]

Thanks, Jess; it's helpful to know testing is really the way to go. If I don't see any improvement cleaning up my diet I might ask my doc if she can do that, just in case.

[bookish]

Hello sweetheart, sorry to hear you are having a rubbish time. Nothing terribly useful to add, just wanted to say Hi and send a hug. I'd blame the cauli cheese but I know what anything even slightly old does to me - that said, it hasn't sent me rushing to pee (diarrhea seems to attack me a bit later as does the full body itching). Glad if the quercetin did a bit to help.

I'm sure you've found plenty online, but these two looked interesting to me. faseb.onlinelibrary.wiley.c...

mastattack.org/2014/10/mcas...

Much love, J

[Chancery in reply to bookish]

My darling girl, great to hear from you, as always, and that's a terrific link, the Mast Attack one - tons of information in it. Far more exhaustive than anything from any medical site I've seen.

My MCAS has taken a turn for the worse recently, lots of skin irritation - now, for the first time, coming on directly after eating; this perennial cystitis, dreadful bloating and, for a while, a runny gut and colic. I stopped eating fruit and cut back on veggies because of it, but I've been eating (plainish) biscuits instead which, although they've turned the dia' to constipation and at least lowered the pain intestinally, CANNOT be doing me any good, so I fear that has to stop. My eye 'rash' came back too, but perhaps worst of all, crushing apathy. I'm not getting out of bed till 1-2pm and I don't even care - that's how bad it is.

Actually, for the first time ever I wondered if it was actually related to the MCAS, and might even be a forerunner to it. It came on first, and I just assumed it was because I'd cracked my ribs and was in a lot of pain and not sleeping, and I'm sure that took a toll, stress-wise, but then by the time the ribs were improving I'd developed all these back pains because of it and they were just as bad (I assume due to awkward sleeping upright and walking stiffly and not moving much). Anyway, ended up with this dreadful agoraphobic apathy - not wanting to go out or go anywhere where there are people, then all the MCAS symptoms start popping up.

It's never occurred to me before that this apathy thing I get may actually be a symptom of a mast cell flare-up. It would be deeply ironic if all the years of 'depression' and the ridiculously euphemistic 'low mood' were really connected to mast cell problems. Bit of a chicken or the egg thing though!

How are YOU though? Is my best girl doing well?

[bookish in reply to Chancery]

The Mast Attack site is good, isn't it. I've been looking at Beth O'Hara too and some useful bits on there as well mastcell360.com/do-you-have.... Hopefully you are just getting up and managed to get some sleep. It really wouldn't surprise me if all of it was mast cells having a hissy fit, so I guess then the question is why and is it a cause that you can do something about. Sometimes we all need a biscuit!

I seem to have ups and downs. Teeth are getting me down and I need to do something but really don't want to. Eye problems not major but a bit depressing so need to do something about that too. We've had drain issues and house alarm issues and the exhaust dropped off the car and we had a lot of snow on Sunday (for us) so some broken branches (and lots of local trees gone) and it has cracked the windscreen - so I seem to be very disorganised and not getting much done, even compared to the little that I usually manage. On the positive side we have baby birds in the garden to chuckle at! Sending a cheering grin and extra hugs x

[Chancery in reply to bookish]

That's a good site too, thanks. Just signed up to get her 'causes' booklet. That would be something, if she could shine a light on what actually causes this. I did her 'do you have the symptoms of MCAS?' survey thing and only got to question 7 before I realised I'd be well over her defining score of 50, so I guess at least it proves both me and the rheumatologist who confirmed it were right! Strange I don't feel more joy at that....

But look at you. At least all my symptoms are self-induced misery and confined to feeling like sh*t - you're having acts of God thrown at you. Collapsing exhausts and falling branches and dodgy drains? No fair! If I was you I'd be feeling very sorry for myself indeed and absolutely sure that God hated me, which I genuinely believe he does. I probably was a dreadful person in a previous life and I'm paying for it now. I reckon I must have at least been a raging bully, if not a serial killer.

But baby birds are definitely a compensation. Again though I could turn that into a negative. I just worry about them all the time, absolutely sure a fox or a cat will make off with thme if I don't guard them 24/7. This year alone I had a major meltdown when the council 'pruned' a tall pyracantha bush in my garden to a mere stub, which they had no right to do, and a real crisis of the soul when a little mouse that lived in my garden was killed. I found him, not long dead, in my blue recycling bin, which I don't use, and was absolutely convinced I'd killed him by putting my food recycling bin in on top of him without noticing him and accidentally crushing him.

I brought him indoors, bawling my eyes out, and studied him minutely, finding a little wound on him (and blood on his mouth) so that convinced me even more I'd crushed him. Between crying bouts, I originally stashed him under the hedgerow, but then sat and cried about him being out in the cold and wet so much I had to go out and rescue him. I brought him in, dried him with a hairdryer (sadly I'm not kidding) and put him in state in an old jewellery box lined with wood shavings. After he was dry I could see the wound more and began to think he might have been caught and dropped by a raptor (there was no way he could get in the blue bin by himself unless he'd fallen in, which seemed unlikely), or perhaps a fox who had either dropped him or stashed him.

Anyway, long story short, I found I couldn't bring myself to bury him, so made a 'tent' out a plastic bag (again, not kidding) and stashed him under a dense thicket with the box open so he could be 'resurrected'. (Seriously, how nuts do I sound right now?) The true miracle of this was though is that he disappeared, box and all, a couple of days later. Not a trace. Now, the truth is a fox probably took him, probably the same one that killed him, which only seems fair. But I like to think he WAS resurrected. See? This is why I can't handle acts of God, and why I feel your pain.

I REALLY need to get out more...

[bookish in reply to Chancery]

Oh we really are twins and I feel your pain too. Perhaps we were Bonnie and Clyde in a former existence rather than Thelma and Louise.....I must have done something!

I got quite a high score too and it didn't make me especially cheerful either but the causes book is interesting and I decided I had most if not all of those too.

I am glad that you gave your little mouse a proper send off and absolutely understand why you had to bring him in and dry him. I'm sure he is squeaking happily in a place free from hungry raptors and thinking kindly of you. I still have the ashes of my number one dog right here almost within reach as I type, along with his collar and tag and a bit of moulted hair. I couldn't leave him anywhere and the thought makes me weep. We worry about our baby birds. Last year a cat took the blackbird's young before I could get outside to stop it. Our dunnocks nested in the hedge and only one of the two babies survived - we found the other and buried it near the driveway with a marker stone on top, the stone was moved and the baby vanished. This year we had been watching the collared doves building and desperately hoping they were deep enough and high enough and then saw that the magpie had found the nest. I found shell and thought that was that. And then two lovely young ones crash landed in the hedge in all the snow on Sunday and we have seen them for most of every day. We have young chaffinch and greenfinch too, so far.

How mean of the council to mess with the pyracantha. They are such lovely plants and provide such good cover.

There is nothing about you that could have been either bully or dreadful, of that I am quite certain x

[Chancery in reply to bookish]

I only hope if we were a pair of bandits in our last existence we had a 'hella good time', made off with a lot of money and partied hard, preferably with buff young men of dodgy character, but great physiques and beautiful faces.

Unfortunately my 'faux' UTI (or real one, if that's what it is) has flared up full measure again today so I gave in and started a course of Amoxicillin I'd been given as a protective measure when I went through this once before. However, that was in 2015! So they are 6 years out of date. Cough. I know I should really have phoned my surgery and got new ones but I couldn't face it. I've dosed upon Ibuprofen (I have the oesophageal pain to prove it) and paracetamol and for the first time today, at 7 P.M. now, I'm not feeling quite so dreadful. This time I'm going to take the whole course. It's a five day one, with one tablet missing but I'll take them anyway, along with plenty of D-Mannose and water and hope for the best.

I'm hoping as they had me on the toilet all morning (I always get a runny gut on antibiotics) that means they are still effective. However, if I'm not showing some sign of improvement by last thing tommorrow I'll bite the bullet and phone the docs and get something in date!

I'm SO sick of this - it's been going on for months now - there's no words. When I come back in my next life I am definitely coming back as a bird. Of course, for all I know, birds get UTIs too...

[bookish in reply to Chancery]

We must have partied hard, because I'm certainly broke now - but maybe we still need to work out precisely which huge oak tree we buried the loot next to...

Really hoping you aren't feeling quite so foul today but please do phone if you can bear it. They will still be effective and shouldn't do any harm but might not be effective enough and you don't want to end up resistant.

Just imagine how many people we could splat......( and yes, I'm afraid they do)

Much love J

[Chancery in reply to bookish]

Oh I reckon we blew the lot, unfortunately. But maybe one of us should come back as a mole to see if we can find anything we might have forgotten about. I reckon it was that reckless life that made God decide to shape us up by giving us plenty of ailments to contend with in this one. He always has had a weird sense of humour.

P.S. Antibiotics appear to be working. I have another (in-date) set of 5-7 days worth. If there is even the slightest suggestion that this is still infected at the end of this lot I'm going to take those too. I'm nuking this thing. I found this book and looked up the author and his website has some info on 'chronic UTIs', and I suspect that's what I actually have and may have had as long as since 2015. Apparently, according to him, most women diagnosed with interstitial cystitis or over active bladders and so forth are being misdiagnosed and what they actually have is a chronic infection which is not being dealt with because doctors only prescribe short courses for uncomplicated UTIs (for fear of the dreaded antibiotic resistance), so women are being effectively undertreated.

As soon as I read about it I thought "Yes!" and felt very strongly that was the problem. I've definitley had this since 2019 and I've been getting more and more attacks and it never feels cleared up. I have a permanently sore urethra and a twitchy bladder and I get very uncomfortable as soon as it even starts to fill up, all of which sounds very much like what he describes. That's why I've decided to throw all the ABs I have at it, because I suspect I would have problems getting my docs to believe it or help me with it. But if you have any urinary problems I highly recommend you check out his website (and the book).

amazon.co.uk/Cystitis-Unmas...

chronicutiinfo.com/treatmen...

[bookish in reply to Chancery]

That made me smile - I'd like to be a mole as they look so cute, but terribly claustrophobic so don't think I'd cope with the tunnelling.....

Website looks really interesting and he sounds like he knows his stuff. I'm so glad they are working and that you've got another lot in case of need. It sounds very much as if you've been trying to fend this off for years so hopefully armed with more antibiotics and more info you will see it off, even if it takes time. Amazing how useful and cheering a little bit of information can be. Take it easy and keep me posted x

[Chancery in reply to bookish]

I love the idea of living in a small burrow so guess I'm going to have to be Moley at the resurrection. You take care of yourself too, and try and be a good girl so God will stop sending you his little 'jokes'. And thanks for always checking in on me - I do appreciate it. XXXX

[bookish in reply to Chancery]

I think I'd do better built into a mound in the ground - more hobbit (or teletubby?). I'm sure we'll make it work......I'll try to be good! You take care too my friend xx