Hi there,
I strongly suspect I have a mast cell condition - which has currently flared up at its worst.
Background:
I was always very healthy, no allergies at all, up until my early twenties when in 2017 I developed a problem with facial swelling and rash. It took about six months to poinpoint the issue, because all my NHS IgE tests were negative, so they misdiagnosed me with impetigo and gave me totally ineffective antibiotics for a while, as the rash got worse. Private blood testing of IgG and IgA from Cyrex labs suggested tapioca starch was the issue - I cut out tapioca and all of my symptoms *immediately* resolved, it was like magic. Note that I'm still IgE-negative to a tapioca allergy, but it's very clear when I eat it that I am severely intolerant (it takes about 36hrs for symptoms to appear).
Okay, I thought, that's the end of that.
2019 - Due to another medical condition, I spent a lot of the year on antibiotics, which may or may not be relevant. At the end of the year, I was also diagnosed with osteoporosis, which was somewhat unexpected - I am only in my twenties and not underweight, nor have I ever been - but my periods were a bit irregular, so I put that as maybe being the cause.
2020 - The rash came back, along with the facial swelling. Except this time, it was worse, because the rash would appear absolutely anywhere on my body, and it was accompanied by intense episodes of uncontrollable sneezing, itchy eyes, sinus pain, etc, and then wheezing breathing. Based on my previous experiences with tapioca, I tried to figure out the allergen by cutting out foods - absolutely no success.
2021 - I retook the private blood testing from Cyrex labs and it was positive for intolerance to nearly everything - if I cut out all of these foods, I'd starve. I was doing a PhD at the time and decided that I would have to simply manage my symptoms because doing a long-term fast and trying to reintroduce foods one at a time simply wasn't feasible if I was going to get my academic work done.
I went to various GPs and have the same problem Every Single Time: the GP completely ignores my history and what I'm actually telling them, and diagnoses me with whatever explains how I'm presenting in the room at the time. So, I have separate diagnoses for urticaria (the day I went in with a rash visible, but had taken piriton which worked on the sneezing), 'idiopathic' allergy to an unknown inhalant (the day I went in sneezing, but hydrocortisone had helped with the rash), and for asthma. And for the osteoporosis, which may or may not be part of it. Every time I tell them that all of the allergy-like symptoms all coincide with each other, all happen at the same time, and are all part of one larger issue - they just ignore me and focus on only one symptom.
When I did eventually get referred to a consultant immunologist (Dr James Laffan), he did the exact same thing as the GP and focused on the sneezing, giving me loads of IgE tests to inhaled substances, which were all negative. At the end of the appointment he said "sounds like a mast cell disorder... I'll try referring you to a gastroenterologist." He never actually made that referral, and annoyingly in his follow-up letter he diagnosed urticaria (which we had barely discussed at all) without mentioning mast cell disorder at all, but the mention led me to researching it, which has led me here.
He did at least recommend that I take fexofenadine and chlorphenamine which have really helped (in increasingly strong doses) for a long time, along with some hydrocortisone on the skin when needed.
But - 2023 - I'm currently in a dreadful state, to be honest. The rash/hives have suddenly, in the last two weeks, gotten worse than ever before - and I really will soon not have any skin left on my hands in particular. It's never spread this fast before, and it itches and hurts unspeakably badly.
Worst of all, my ultimate last resort - fasting completely - is not working. At the time of writing I haven't had anything except water in four days and the rash is STILL spreading to new areas and getting more severe (though fexofenadine etc is working on the other symptoms). I'm simply using ice packs and paracetamol to cope with the pain and itching. And trying different brands of bottled water in case that makes a difference(!).
My GP gave me a 5-day course of steroids but made clear he won't make it a long-term prescription - so I'm saving it in case the rash gets worse on my face, which I'm now deadly terrified of. It's already around my lips. When the rash is on my face I have honestly no quality of life.
Above all, I'm upset that through all these years of seeing so many doctors while getting steadily worse, and now at a point where I'm becoming genuinely disabled, mastocytosis and MCAS etc have all been known to exist, yet I've not been given a SINGLE diagnostic test except those [redacted] IgE tests, which are always negative, and seem to be used as a reason to dismiss me.
I honestly suspect it works against me that I'm a young woman and cry very easily in appointments and "look healthy" when I don't have the rash, that they decide immediately on seeing me that I'm an attention-seeker or just stressed. I've tried taking my husband with me but I don't seem to get much better treatment.
I've been reading around this website for clinician recommendations - I've already tried to get in touch with Dr Alexandra Croom but apparently she's not taking on new patients, I've tried Dr Jose Costa and Dr Suranjith Seneviratne but not heard back yet, I'll see a dermatologist and a gastroenterologist from the Nuffield... has anyone else had diagnostic tests and/or competent care from any other doctors? Private or NHS - I'm genuinely so desperate at this point that I would even move house to be in the right postcode for a good doctor. Apologies it's a bit of a depressing post - and I don't even know for sure whether the issue is MCAS/mastocytosis etc because I've never had any tryptase (etc) testing.
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