Hi Everyone,
Has anyone seen an immunologist for suspected multiple chemical sensitivity/mast cell disorder/activation syndrom and autoimmune conditions?
What was your experience?
I'm due to see an immunologist soon and would like to hear from anyone who's in the same place as I am or anybody else.
Cheers : )
Ah, this is tricky 
I have MCAS and an unspecified autoimmune connective tissue disorder, as well as asthma which appears to only be properly triggered by my extreme chemical sensitivities and MCAS reactions. Most of this has only been diagnosed fairly recently, despite having had symptoms for many years.
Most immunologists either do not believe that this type of mast cell disorder exists and / or are not even aware of it. They will check for mastocytosis, and will likely be helpful if you have severe IgE mediated allergies and are frequently getting stage 4/5 anaphylaxis requiring ambulances, emergency treatment and intubation. Thankfully, my reactions are not this severe, but that does mean I get absolutely nothing from immunology that I can't get from a trip to Boots!
There are a TINY number of specialists that recognize less extreme MCAS within the NHS. However, most of them are not immunologists but other overlapping specialisms (dermatology, dysautonomia etc). Private is an option or you need to get very lucky / insistent about who you are referred to (maybe you will manage this, I did not)!
For most autoimmune conditions you generally need to see a rheumatologist, not an immunologist - that is who deals with mine. And they will deal with those issues completely separately. Yes, before you ask, the system is terrible and nonsensical and completely broken for this kind of stuff.
I do wish you luck at your appointment though, maybe your experiences will be less bad than mine 🙂
Hi, thanks for replying; I've just come off antihistamine to attend, and am feeling pretty rotten already - not looking forward to the next 5 days.
I'm sorry to hear that you've had such bad experiences - that's pretty much what's been happening to me over the years too with some exceptions.
Thanks very much - I will post when I've had the appointment - hopefully I will survive to tell the tale.
🙃
I'm under the National Referral Centre for Mast Cell Diseases in St. Thomas' Urticaria Clinic. I have MCAS and asthma. I also have autoimmunity issues as well.
Happy to answer questions!
Hiya -
How were you diagnosed with MCAS? I can't even get a doctor to discuss mast cell activation problems let alone test for them.
I've been struggling with autoimmune problems most of my life; I have breathing problems, and neurological symptoms as a result of developing extreme environmental intolerance on top of longstanding neurological problems. One of the most annoying symptoms is brain fog and fatigue that never quite goes away.
Do you issues with being near perfumes, air fresheners, laundry products etc?
Are there any tests that I should be asking for, to look for MCAS?
Any help to point me in the right direction would be appreciated.
Well a lot of things would have to be looked at and your symptomology would have to match. They'd then carry out blood and urine tests to look for tryptase and various mediators that are released by the mast cells (this is how I was diagnosed).
It may be MCAS or MCS, but it might not be!
And yes, I do get MCAS and Asthma issues from various scents in the air, natural or synthetic.
My diagnosis was done many years ago now at St. Thomas' - they took a thorough history and did a lot of testing including autoimmune testing and various subclass immune deficiency testing too. I was basically a poster child for MCAS and treatment has helped massively.
That's just the point, I can't get anyone to test; I did get serum tryptase blood and urine after asking and I am waiting for the results.
If these come back clear then I am hoping that various mediators will be looked for.
It would help me tremendously if I could know exactly what tests I should be asking for.
I was wondering if tests such as cytokines, interlueken (2, 6 and 31 specifically come to mind), lucocytes, lucotriens, T-cells or B cells would be right way to go with testing. I am really struggling here.
One of the things that happened to me when I was using deodorant, sanitary wear ( in the case of the sanitary wear, swelling, heat and discomfort in the places of contact, plus feeling as if i had been kicked in my back and stomach), i was bright red burning skin under my arms, flashes of heat under both arms that was worse under the left arm, heat flashes in my face and chest, feeling like i had been punched in my chest, a bit short of breath and a feeling of stiffness all over me.
I no longer use deodorant and am on cetirizine, which does calm the similar reactions I was getting when my hands were coming into contact with chemicals. Sometimes still, if I handle mail etc I still get bright red itchy patches on the backs of my hands that feel as if they are spreading from underneath my skin rather than from the surface.
That is just one lot of symptoms I have when everyday personal care products come in to contact with me.
Does that sound like MCAS to you?
I'm not exactly textbook for MCAS but it would explain a lot of my symptoms.
Would you be willing to message me privately if you are not comfortable to post about tests in public?
Kind Regards
Rubble 86
If they're not sure what tests need to be done, then they won't know how to store the samples and likely won't be up to date on how to treat you either. I genuinely can't remember the specifics either, aside from tryptase, apologies, you're still more than welcome to message me though.
Could be MCAS, but MCAS generally requires two or more body systems to be involved, you've so far only shown one. It also requires a bunch of other things to be ruled out too (brain fog is making it hard for me to remember these, sorry!), and positive response to medications (you have a positive response to Cetirizine, a non-sedating H1 blocker ie your symptoms went down when you started it). Positive blood or urine tests just solidifies it. Does that make sense? In the absence of positive lab work, positive response to the usual medications can support a clinical diagnosis of a mast cell disease too.
Thank you ever so much for replying; I completely understand I get brain fog coupled with an atrocious short term memory and word finding difficulty at times, especially when I'm trying to write letters, takes days sometimes just to do a simple one.
I'm guessing that a second system would respiratory, with the breathing problems I have being exposed to most scented products, in ridiculously tiny amounts.Honestly I could get a job as a sniffer dog (poetic justic for going out in the night wearing half a bottle of Eternity in previous years!) An inhaler does help in emergencies but is not ideal for me. I do have a feeling of weakness in my breathing but nothing awful until I get exposed - I'm housebound so I get a false sense of security...then someone delivers a parcel.....AAAGHHH!
Problems with bladder and bowel control may possibly be a third?
Perfect sense - i just wish that the antihistamine blocked the symptoms completely but I suppose I have to be grateful for small mercies.
Thankfully I can still enjoy chocolate!
I'm glad to hear that medication has brought you relief and I hope that you are feeling good today.
See this sort of thing could indicate a mast cell disorder but without someone who has extensive knowledge too look at everything going on for you it's hard to say! That and I'm not a doctor lol, just a patient.
For sure, I'm very fortunate with the medications I have access to, even though I'm still bothered by the sheer amount I'm on to manage all my conditions. The problem is I can't be without the medications (any of them) or things crumble, so...sucks. oh well! For context, I'm on six different medications to manage my MCAS, as well as a bunch of other medications for my Asthma. Plus as needed things like Epi-Pens, etc. Also on Xolair as well! It's a lot, but I'm way less ill now than when I was first diagnosed, and for that I'm so grateful.
Hopefully you'll find a doctor who can manage your symptoms for you and get symptom relief as well. You deserve it. This stuff isn't easy.
Also for what it's worth, I have bowel and bladder problems (I self-catheterise even!). Definitely not alone there!
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