MCAS

[Catchya]

Hello

Really good to find this group on HealthUnlocked.

I’ve been sick on and off for 10 Years. It all started when I went to live with a friend for 6 months. After about a month I felt so sick I couldn’t get out of bed most days. I realised after a while it was some kind of allergy. It took me two Years to get it under control and since then I’ve always taken an over the counter antihistamine. Have had gut issues, sinus problem, allergies to chemicals, dust, reflux, sweats, exhaustion, the list is endless. In the last Year it’s just got worse and worse. In lockdown I went to live with my sister who’s garden backs onto a park and after 2 weeks it all started again. I’ve looked into MCAS and it seems that I have most of the symptoms. Not well enough to work at the moment. Someone on an allergy blog suggested I might have MCAS. Relief!! people just think Ill again what is it this time. You feel as though you’re the only person on the planet that has so many ailments which I began realising had to be connected. Anyway, found a consultant that specialises in London because if that’s what it is I feel I need a little help. Any info /recommendation to keep it under some kind of control if that’s possible would be greatly appreciated.

Thank you

Nermin

[floating_]

If you have known triggers, aim to avoid them and speak to your GP, they may decide to put you on some basic medication to help whilst you wait to see a specialist.

[Catchya]

Thank you.

[rjkb]

I'm new to this site, having suffered for a few years, getting worse each year - mostly migraines nearly every night. A low histamine diet helps, though it's hard not to make mistakes. Best diet advice is on this website mastozytose.com/histaminaer..., it's in German but it is relatively easy to understand. No prepared baked products (yeast and additives). No processed or smoked meat (histamine and additives) - fresh and frozen meat allowed (I find supermarket packets, well in date are okay). Fish - avoid, risky. Most vegetables, except avocado, all beans/legumes, peas, peppers, tomatoes, spinach, soya. No preserved or processed vegetables (additives, vinegar). Some fruit (apple, apricot, blackcurrant, blueberry, cherry, melon, nectarine, peach, pear, redcurrant). no fruit preserves (citric acid, additives). Only fresh dairy (milk, butter, cream cheese, quark), but not yoghurt, buttermilk, other cheese. No alcohol or fermented drinks (yeast and alcohol); no processed fruit drinks (additives, forbidden fruit). Also avoid citric acid, curry, honey, mustard, soy/soya, vinegar, yeast, all preservatives and food additives. What was not made clear to me is that while some foods produced an obvious reaction with two hours, the effect of others could be up to 12 hours later - also some effects last up to 48 hours .... and the combination of several problem items is almost insoluble. If you stick to this list for a week, you should feel better. Then gradually introduce one thing every 3 - 4 day to find other acceptable foods. We're all different. Best wishes

[Catchya in reply to rjkb]

Thank you. This is very helpful!

[Mastomum]

Hi Catchya, i new too. Been ill 4 years with asthma and allergies to everything. Started with gastric issues 3+years back and struggled to get out of bed. Went on gf diet which seemed to help. Then heart issues and several anyphylaxis like episodes. On fostair too. .Eventually cut histamine and began cetrizine but immu says tryptase is normal and do not have too many skin issues. I am sure it some mast cell disorder but feel so lost. So hard not having a diagnosis so feel your pain x

[Catchya in reply to Mastomum]

Hiya

I’ve only just seen this so apologies for the late reply. I’ve found a Dr that specialises in MCAS, she actually has it herself, I’ve arranged to see her in September not possible until then because she’s so booked up! I feel that there is a light at the end of this very long tunnel…

[Jenny3267]

Please could you share who the Dr is please.