Dr Seneviratne Lecture

I was diagnosed with MCAD and HIT by Immunologist Dr Seneviratne who, IMHO, is the only person in the UK to see if you have suspected Mast Cell Activation Disorder.  He gave a lecture at EDS UK’s 2014 conference on mast cell disease and histamine intolerance and the link to EDS and other conditions such as POTS, and EDS UK have now placed a video of the lecture in the member’s section of their website.

Below is a summary of the salient points of Dr S’s talk, most of which were discussed with me at my appointment with him in 2013.

The immune system is made up of 3 components: white cells, antibodies and complement (which helps both the white cells and antibodies to work).  Mast cells are a type of white cell which, historically, the body used to fight parasites.  However, in modern times we now come into contact with very few parasites and the mast cell hasn’t got much to do.  Consequently in some people it can start to misbehave, reacting to things it shouldn’t because it’s basically a bit bored (my words, not his!).

As an immunologist Dr S worked predominantly with people who had either allergies or immuno-deficiency, ie the immune system was having an IgE reaction to things like animal dander/pollen/nuts or under-reacting to things it should be fighting.  However, he kept seeing patients who had immune reactions, particularly to foods, chemicals and drugs, but who didn’t fit the diagnostic criteria for either allergy or immuno-deficiency.

These patients were usually diagnosed with multiple chemical sensitivity but most doctors believed the symptoms were psychosomatic as conventional allergy tests showed they weren’t actually allergic to anything, with normal IgE results, normal tryptase levels and a normal amount of mast cells.  The mast cells were, however, obviously ‘twitchy’ and reacting willy nilly to environmental situations they should just be ignoring.

Other Consultants around the world were seeing the same thing and, around 10 years ago, collaborated to introduce Mast Cell Activation Syndrome for these patients.  This is now a recognised disease entity with strict diagnostic criteria.

About four years ago, Dr S began getting referrals of patients with MCAS from colleagues working in other fields and realized he was seeing a lot of people with both Ehlers-Danlos (hypermobile type) and/or POTS.  There appears to be a link between these two diseases and MCAS but as yet no-one knows why.

Mast cells produce around 30 chemicals when they react, including histamine, prostaglandins and cytokines.  Historically, histamine has been extremely difficult to measure as it starts to break down immediately after it leaves the body.  Conventional histamine tests, where the sample sits on someone’s desk for hours, then is transported to a lab where it often isn’t tested for days on end, gives very unreliable results.  Dr S, therefore, only uses one lab to test histamine following very strict protocols.  This test measures:

  • plasma histamine
  • urinary histamine
  • spot methyl histamine/creatinine ratio
  • histamine releasing antibody

He also measures serum tryptase.  In some people, all these tests will be normal yet they will still have symptoms of mast cell activation.   In the past 12 months, Dr S has therefore arranged for serum PGD2, 24 hour urine PGD2 and leukotriene samples to be sent to the Mayo Clinic in America for testing, which often show evidence of mast cell activation even when histamine levels are within the normal range.  He also recommends a gene test for the C-kit mutation because around 10% of people with MCAS will have a faulty C-kit gene (responsible for histamine activation).

Current drug treatment options for people with MCAS are poor and much more work is needed to find more effective medications.  Current treatment consists of:

  • Second generation H1 antihistamines, which should be given in high doses, up to 4 times the level used to treat conventional allergies.  Doctors aren’t used to prescribing higher than normal doses of antihistamines, however it is safe and if they do a Google search they will see information confirming this.  Do not use first generation H1 antihistamines, such as Piriton (chlorpheniramine) as they cross the blood brain barrier and can cause serious side effects if used long term, particularly in children.
  • Mast cell stabilizers such as Sodium Chromoglygate (Nalcrom) or Ketotifen.
  • Monteleucast, which blocks leukotrienes.  This is used as a first line of treatment in the USA, but as it only blocks leukotrienes and not other mast cell mediators, Dr S prefers to try mast cell stabilizers first.
  • If all else fails, patients often try supplements such as Quercetin.  However, as there is no literature available on their safety and efficacy Dr S doesn’t prescribe these himself.
  • Following a low histamine diet is important.

Histamine Intolerance (HIT) is a totally separate disease to MCAS, although it can produce almost identical symptoms.  HIT is due to low levels of DAO in the gut.  DAO is used to ‘mop up’ the histamine we all produce when we digest food, plus any histamine contained in the food itself.  When DAO is low it can’t deal effectively with this digested histamine, which builds up in the body to produce toxicity.  Some people have MCAS only.  Some people have HIT only.  While others have both MCAS and HIT.

Some patients will test negative for histamine, PD2 and leukotrienes yet still have mast cell activation symptoms.  Mast cells produce around 30 mediators and we currently only test for a handful of these.  If all evidence points towards MCAS, Dr S will do a trial of antihistamines and mast cell stabilizing drugs and see how the patient responds.  It is recognized, however, that many people with MCAS tolerate drugs poorly, if at all.

As a patient it’s brilliant to see that, finally, MCAS is being recognised and the link between mast cell activation and EDS has been discovered.  However, there is a long way to go in terms of educating the mainstream medical profession on mast cell activation and this will include turning long held beliefs on the way the immune system and mast cells work on its head.  We also have to find more effective treatments, particularly for those of us who have mast cell reactions to currently available drugs.  “The journey of a thousand miles begins with one step.”

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28 thoughts on “Dr Seneviratne Lecture

    1. Jak Post author

      To be fair the “bored” bit was my own words. He just said that mast cells now didn’t have enough to do and were over-reactive.

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  1. d

    Hi Jak

    I wrote this in another post but it seems where I live there are still specialists who are not on board with the idea of MCAS. My personal case history ticks all of the boxes of MCAS you mention above, and in previous posts, but the specialist in my area pretty much dismissed the idea out of hand with no thorough case history taken and minimal testing (serum tryptase only). Acceptance of MCAS as a potential diagnosis still has a long way to go. Interestingly, in spite of the lack of clarity with my diagnosis I have been prescribed and use the medications above with the exception of the mast cell stabilizers. There has been a reluctance to try it without a firm diagnosis, which I may never get. In the meantime, I follow your blog for practical insight into living with this, I have identified many, many triggers which I try very hard to minimize and I follow a low histamine diet. The things which have made the biggest difference in my overall health are adequate doses of antihistamine (which fluctuates depending on the season or what I am doing), daily rest, low histamine diet and daily moderate exercise. The last one is a recent addition as for a long time I was too tired to do anything, but I found it has made an impact on my body’s ability to tolerate my many triggers.

    I know I say this a lot but thank you for your blog. It has made a big difference in my life and I appreciate your efforts more than you will ever know.

    d

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    1. Jak Post author

      I’m so glad you find my blog helpful d, though sorry you’re travellling this crappy path too.

      My ME specialist, who’s an Immunologist, poo poos the whole ideas of MCAS – you either have high tryptase in which case you have mastocytosis, or your tryptase is normal and you don’t have a mast cell problem, end of story :-/

      The north west regional allergy specialist, also an immunologist, said I didn’t have mast cell disease then went on to describe it beautifully and offer me the drugs used to treat it. Very odd!

      Dr S is the only doctor in the entire UK to test for MCAS. It’s a scandal, as he does this work privately and it costs a small fortune. Not everyone can afford to see him. I myself haven’t seen him since being diagnosed as I just can’t afford the fees + hotel +travel (he’s 300 miles away), even if I felt well enough to make the trip (which I don’t).

      We’re not alone. Many people struggle to get an MCAS diagnosis, particularly here in the UK 😦

      Jak x

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  2. kneillbc

    Jak, you are very familiar with my journey in trying to get diagnosed. One doctor I have no choice but to work with still insists that it is ‘impossible’ to have anaphylaxis without having a positive tryptase test. He therefore claims that because my tryptase (which was taken once, when I completely reaction-free) is not elevated, I am not having anaphylaxis. He even tried to convince the nurses while I was in hospital, to WAIT for him to get there before giving me epi. Because nurses don’t recognize anaphylaxis…It’s actually quite a dangerous position fir him to take. Imagine if I was having a reaction, I asked for epi, and I didn’t get it??? I have lately come to suspect that he did some very underhanded, possibly illegal, certainly unethical, things to try and prove his point. (Tests mysteriously cancelled, samples lost, appointment with other specialists cancelled because they ‘were under the impression it was no longer required’, etc.). I have NO idea why allergists seem to be SO adamant that MCAS doesn’t exist. One actually said to me “I don’t believe in all that mast cell stuff.” Really? What don’t they believe? That they don’t exist, or that they can’t malfunction? The first is pretty easy to prove, the second, well, mast cells would be pretty amazing and unique little guys if they ‘couldn’t’ malfunction. Every other cell in the human body can…. I don’t know why they are so adamant about it- it doesn’t undermine ‘traditional’ allergies, and it helps answer the question of what the hell is going on in our very messed up bodies. It seems to be such a no-brainer.

    Karen

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    1. Jak Post author

      I know Karen, it’s just bonkers! New diseases emerge all the time: AIDS, CJD, Swine Flu to name a few. Yet a new mast cell disease appears and it’s not considered possible. Er, why not?! It’s so arrogant to think we know everything about the human body when we clearly have so much more to learn. Jak x

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  3. Cook

    this is really helpful. I have EDS, and have become increasingly increasingly sensitive to medicines, dust, some foods, bloated, etc

    In the past half year I have had dizziness and inner ear trouble, tooth ache and sinus problems, which I put down to dust allergy. But now I am getting receding and bleeding gums which is more scary. Would you know if this could be an indication of allergy problems, and/or an indication of Mast Cell problems?

    Many thanks!!

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    1. Jak Post author

      Hi Cook

      Bleeding and receeding gums are much more likely to be down to your EDS – I’ve had bleeding gums nearly my whole life and my gums started receeding in my thirties.

      There is some info on dental issues in EDS here http://www.ednf.org/medical-professionals/dental-manifestations-and-considerations-treating-patients-ehlers-danlos and a whole forum thread on receeding and bleeding gums here http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/receeding-gums-and-eds-iii/

      Jak x

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      1. Cooks

        Dear Jak,
        I do hope you are doing well. I am reverting back to the idea of seeing if i have mcas – having persistent bloating+ its symptoms as well as sensitivity to wide range of things (dust, smoke, foods,medicines), and degenerative discs. i gather from hearing Dr Seneviratne’s lecture on EDS UK some of those things might be indicative of MCAS. I have found this list of doctors: would you know which might be most likely to do the proper tests – i.e. who is best? http://www.ei-resource.org/forum/multiple-chemical-sensitivity-mcs/3382-mcs-as-mast-cell-activation-disorder?start=12
        I am also open to going to Spain or getting tests done in Spain if i can work out who to go to if that is cheaper and more feasible than going to Dr Sev.
        Many thanks
        Cooks

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        1. Jak Post author

          Hi again Cooks

          As I said in my comment on the low histamine food list page, I’m not an expert in MCAS and can only talk about my own experience.

          I’ve only seen Dr S and have no knowledge of any of the other doctors I’m afraid. Dr S I know for sure is the only one who thoroughly tests for MCAS. All the NHS doctors will only test for tryptase and nothing else and tryptase is always normal in MCAS. However, they can still give a “probable” MCAS diagnosis based on your history, symptoms and response to anti-histamines and mast cell stabilizing drugs.

          Have you tried contacting the website moderator and asking who she thinks is best, or UK Masto and asking who they’d recommend?

          Jak x

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  4. Kathy

    I’m curious: if mast cells are stabilized, is the EDS stabilized as well? I have MCAS, but not EDS. I have a friend recently diagnosed with EDS, and have sent her this article.

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    1. Jak Post author

      Hi Kathy

      It’s thought that, in some people, EDS causes unstable mast cells because mast cells live in connective tissue and in EDS the connective tissue is overactive, which can make the mast cells living within it overactive. This is only a theory – in truth, we don’t know yet why some poeple with EDS also get MCAD.

      EDS is not the sole cause of mast cell disease – most people with either Mastocytosis or MCAD don’t have EDS. I don’t know if you’ve read my Canary article which lists the many reasons mast cells can degranulate, but if not here’s the link https://mastcellblog.wordpress.com/2013/11/12/canary/

      Stabilizing mast cells has no effect on EDS, which is a genetic disease of the connective tissue. It’s the EDS causing the MCAD, not the other way around.

      Jak

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  5. Cook

    I’m confused by the treatment here.

    a) how can you tell whether you have MCAS or HIT, and which is more common with EDS?
    b) If it’s MCAS, why do you need to follow a low histamine diet?
    many thanks

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    1. Jak Post author

      Hi Cook

      I’m not an expert, so can only go on what Dr S told me. He will also readily agree that doctors are still in the dark about both HIT and mast cell disease too and much more research needs to be done.

      You can only tell whether you have MCAS or HIT by your test results. In HIT you have low DAO. In MCAS DAO will be normal.

      In MCAS you have either high histamine, leukotrienes, chromoglanin A, heparin or all of the above. Histamine can also be high in HIT, though not the other mast cell mediators as far as I’m aware. About 10% of people with MCAS will also have a faulty C-kit gene.

      MCAS seems to be more common in EDS. The theory is that mast cells live in connective tissue, and in EDS the connective tissue is overactive. This in turn makes the mast cells living within it overactive. No-one knows why some people with EDS get MCAS and others don’t. We also don’t know if the ‘overactive’ theory is correct or not yet.

      Some people, myself included, can have both MCAS and HIT.

      Re the low histamine diet in MCAS: many things cause mast cell degranulation, not just food. However, many people with MCAS seem to react badly to lots of foods, specifically those high in histamine. Again, we don’t know why yet but it may be something to do with the fact that our entire GI tract is packed with mast cells.. Dr S has simpy seen good results from people with MCAS following a low histamine diet which is why he recommends that as one part of the treatment.

      HTH
      Jak

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      1. Cook

        thanks so so much, after a year of wondering about this, your post is super helpful. Do you happen to know, – I gather Dr S is covered by health insurance (sometimes), but presumably expensive tests done in the US, which presumably cost £1000+ are not likely to be covered? Obviously, just in case you have a general idea, but don’t worry, I won’t rely on it.

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            1. Jak Post author

              I think the OC was asking whether the leukotriene tests which are sent to America are covered by insurance – do you know C? I know Julie’s had them done, I should have remembered to ask her if she had to pay herself or not x

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            2. Cook

              many thanks – yes the US tests. Dr S’s office said he was covered by insurance but couldn’t say what are the conditions that insurance will usually accept paying for. Any ideas? thanks

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                1. Cook

                  many thanks – I have allergies and am with PPP so that’s really helpful. thanks. Presume doesn’t cover the US tests?

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        1. Jak Post author

          p.s. forgot to say in my reply about the difference between HIT and MCAS: in HIT you will only react to foods. In MCAS you usually react to environmental triggers, eg chemicals, drugs, pollen, stress etc.

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  6. Dee

    what a great piece. Can you talk about any symptoms alleviated by the treatment of MCAS, or is it too early to say?

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    1. Jak Post author

      Hi Dee

      I started treatment 2 years ago, with a low histamine diet and H2 blockers. I then added in an H1 antihistamine 18 months ago. Worked well.

      I was having anaphylaxis after every meal, and the low histamine diet cured this.

      I found on the antihistamines I slept much better. Stopped getting up to pee every single night. My back pain was about 60% better. I had more stamina. Brain fog improved. Chronic nausea and stomach pain improved. Migraines weren’t cured, but definitely had less of them.

      However, I still regularly got hives. Sneezed every day. It didn’t help my alopecia.

      A few months ago I became allergic to the H2 antihistamine, and then last week to the H1 antihistamine. This happens to me all the time – I tolerate a drug for so log then my immune system rejects it.

      I’m now back to having mild reactions after random foods. Not sleeping as well and have more muscle spasms. The nausea and stomach cramps are back 😦

      Jak x

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