New MCAS Diagnosis

[June20]

Hi, I have just been diagnosed at guys and st Thomas with MCAS. This came as the result of a number of severe allergic reactions, using an epi pen ending up in a&e etc. I am now on a high dose of fexofenadine daily which stops the reaction becoming severe so far. I’m new to all this and learning loads. What’s weird is I feel very bloated, painful stomach and weirdly weak faint sporadically, it’s subtle but I feel it’s there. Is this normal, any help advice really appreciated. My history is I’m 40, sporty, active with no history of medical problems.

[Jess-UKMasto Partner]

Hi June, it's a great start that you've pinned down a diagnosis, though I'm sorry you're having symptoms that aren't managed with the fexofenadine. Mast cell mediators (the chemicals they release) can cause a range of symptoms in the GI tract. One thing histamine can do is cause the overrelease of stomach acid-- and because the histamine docks with on receptors that aren't blocked by fexofenadine (which blocked H1-type receptors) an H2 blocker can sometimes help with that. Some people also get some GI relief from Nalcrom, a mast cell stabiliser that is taken orally (and indeed is most effective in the GI tract). Some patients report that with Nalcrom they tolerate it well if they start very slowly with the smallest dose and work up to the full dose. I have mastocytosis (another mast cell disease) and I call my swollen belly my baby elephant. Mine can appear out of nowhere and then resolve. You could reach out again to your GSTT doctor to discuss whether you could try one or both of these (one at a time so you can see what works!). GPs usually don't want to be the ones to initiate Nalcrom, and tend to default to a different category of medication for stomach acid issues even though H2 blockers often suit MCAS folks better than the other category (PPIs). Welcome!

[June20 in reply to Jess-UKMasto]

Thank you, I really appreciate you taking the time to reply.

[Agatha_33]

Hi June - welcome to this select group! It's good that you have a medical diagnosis. I started with MCAS about 9 years ago so further along in the journey. It is hard at first making the adjustments, not just the practical stuff but also the psychological.

I agree heartily with Jess' advice about the medication side. A problem is that our over reactive immune systems don't just react to one thing and it is a process of trial and experiment to work out what aggravates it but also what helps. I have wheat intolerance amongst other things , which was diagnosed under a gastro specialist through FODmap diet. A starting point could be noting any particular foods which coincide with symptoms. You could ask for specialist gastro referral. It doesn't help that modern medicine tends to specialise in particular area, as MCAS is whole body condition and affects multi internal body systems.

There are things which seem to help: regular exercise (whatever works with your immune system) , eating healthily (the usual high fruit and veg, low processed foods) and watching stress levels. I also swear by the supplement Quercetin. I've found helpful alternative approaches, particularly osteopathy and acupuncture (helps with parasympathetic body systems).

Just wanted to end on a note of optimism. Things may seem difficult at the moment, but the MCAS condition is something that can be managed and lived with.

[June20 in reply to Agatha_33]

Thank you, all really helpful advice.

[Feks]

Can I ask who diagnosed you at st Thomas. I’m having issues with a doctor taking my diagnosis away from there.... good luck with it all. A symptom diary has really helped me to identify triggers.

Abi :0)