Seeking mast cell disorder diagnosis

[DalesDweller]

I was very pleased to find your support group and would really appreciate some advice. I think I may well have a mast cell disorder/histamine intolerance. I have read quite a lot about it and my symptom profile seems to fit very well. Symptoms started about 12 years ago and worsened with two episodes of burnout in Jan 2021 and June 2022.

I have existing medical diagnoses of ME/CFS, IBS-D, rapid small bowel transit, severe anxiety/moderate depression (which responds well to mirtazapine, but I had adverse reactions to sertraline and zopiclone), as well as an IAPT CBT practitioner diagnosing perfectionism. My eyesight also went rapidly from almost perfect vision to needing a light prescription for both distance and reading in about a week after taking zopiclone after my first burnout.

Among other indicators on top of these diagnoses, I have long been very sensitive to all perfumes and chemicals in products (e.g. I can't be in a car or room with someone wearing perfume or an air freshener) and have a adverse reaction to alcohol (last time I drank ca. 50 ml rum and was awake half the night with night sweats). If I deviate from my very strict low-FODMAP, low-fibre, yeast free, then I get diarrhea and extreme fatigue symptoms. I get lightheaded on standing and have cold feet (both checked by GP with no standard adverse indications).

When I spoke to my GP about the possibility of a mast cell disorder, she said something like "I thought Mastocytosis was to do with hives and anaphylaxis, they didn't really teach us about it" and said she'd have to go away and research it and get back to me. That was in November and no word from her. I found out from the GP's secretary that the GP wrote to the gastroenterologist about it, but he's already discharged me and told me in no uncertain terms that he is not interested in supporting me any further since he diagnosed rapid small bowel transit, and that I should seek a second opinion if I want any further consideration. I have also asked the NHS occupational therapist dealing with my ME/CFS and my NHS dietician, but they were unable to help either (but the OT did pass on my query to the specialist ME/CFS GP she works with in Sheffield a few weeks ago).

I live in Derbyshire Dales. The hospital specialists mentioned above are at Chesterfield Royal, and my ME/CFS service is at Sheffield Hallam.

I would really appreciate your opinion on my situation and advice. In particular, about who I can direct my GP to help her help me explore the possibility of a mast cell disorder and/or advise my GP on 'official' NHS-endorsed diagnostic/treatment protocols.

I wrote twice to the contact address on the UK Masto website over the past few weeks with the above information, but have not received a reply.

Thank you in anticipation.

Stephen

[Mrs-Champers]

Hello - I’ve just stumbled across this post whilst searching for an MCAS /HIT group. Have you had any luck with your diagnosis?

I’ve found two Facebook groups really useful - one is an American site with a big international following and one is a UK site. I’ll try and link them here. If you search within these groups there are resources to help identify consultants who understand this conditions and can help with diagnosis and management (and some to avoid!).

From what I can tell it’s a relatively new area and many doctors are unaware and it’s not supported much on the NHS. Those that have looked in to it either get it (but often don’t know enough to help properly manage) or they poo-poo it. It seems a functional medicine doctor is often a good place to start but from what I can tell these are mainly or only private. It’s difficult because those who don’t fully get it often just prescribe antihistamines but that’s not getting to the root cause.

From the Facebook groups I’ve seen a specialist near to you in Nottingham get recommended a lot as someone who really understands MCAS - Dr Croom if I’ve remembered correctly. But I believe she is only taking private patients at the moment.

Here are the links;

m.facebook.com/groups/hista...

m.facebook.com/groups/71501...

I hope this helps. I understand the position you’re in!

[DalesDweller in reply to Mrs-Champers]

Hi,

Thank you so much for taking the time to reply to me, this was really useful. I think I found the doctor you mention: spirehealthcare.com/spire-n... She really sounds like a good person to help me, especially as she also considers intolerances and hyersensitivities, not just allergies.

Since originally posting, I did persuade my GP to make a referral to an NHS immunologist (I don't know which one). She thought it would be a long wait. It seems like the hospital that Dr Croom works at takes referrals under an NHS Options scheme, but it isn't specific about whether she does. I'll make enquiries, it might be possible to get my GP to switch my referral to her.

I'm not on Facebook, so couldn't see the groups you posted.

Thanks again so much, I'll let you know how I get on.

Best wishes,

Stephen

[Mrs-Champers in reply to DalesDweller]

Hello,

I’m really glad my reply might be if some help. Yes, you’ve found the right person! The posts I’ve seen have spoken very highly of her. Again, this is only from memory of the posts, but I think she may currently only be seeing people privately because of demand, but I would definitely try either way. With regards the Facebook groups, here are the associated websites;

healinghistamine.com/

mastcellaction.org/

In fact, I think the organisation that the second link is for, is the one that this health unlocked group is for now I look at it!

Would be great to hear how you get on. I’m juggling a few competing medical needs and really want to get to the best person on this - I’m based in southern England but starting to think I might travel to see this consultant!

Good luck and best wishes.

[DalesDweller in reply to Mrs-Champers]

Thanks for the website links, that's very helpful too. I came to this forum via ukmasto.org, so I think your second link is a different organisation (which also looks useful)

Good luck and best wishes to you too.

[HBEd]

Hi.I am also trying to pursue options

I am seeing a Dr c Taylor Dundee Tayside health zoom call

She has a 5 mth wait list though but I'm hopeful she'll help me.

[DalesDweller in reply to HBEd]

Sorry to hear about your struggles, it does seem to be a common story unfortunately. I've made some progress through persistence and being well informed. Don't have a referral (yet), but my GP is being supported through correspondence with immunology at Nottingham (who will take a referral based on the standard consensus criteria: 2+ affected body systems, a positive response to medication and a positive mediator test). I had a tryptase test now (which was normal), so now been advised by Mast Cell Action to pursue other mediator tests (mastcellaction.org/diagnosi.... I've been working my way through various antihistamines, with a positive response to Chlorphenamine Maleate (Piriton) but made me too fatigued. Hoping to get on sodium chromoglicate soon.

Can't recommend Mast Cell Action enough. They have a great website and can provide tailored support based on where you live and where you are in your journey if you email them. They also have a weekly support group online, Chi Gong (which is done seated and very soothing), and regular expert talks (mastcellaction.org/events). Do reach out to them if you didn't already.

In dealing with my GP, it's been really helpful to write down my symptoms (compare against symptom profiles from Mast Cell Action and elsewhere) and share information with them recommended by Mast Cell Action. This is now on my file in case I speak to a different GP so they have the info to hand. If you're struggling to make progress with the GP, a written impact statement about how your life is affected is also a good idea.

Wishing you well and best of luck with your journey to a diagnosis and good health.