Mast Cell Appointment

19th June 2013 was D-Day for my mast cell appointment with an Immunologist from Preston.  I was given his name by Mastocytosis UK, a support group for people with Mastocytosis though they have requested that I remove his name from this blog post which is decidedly unhelpful – blame them not me.  He was listed as dealing with Mastocytosis and complex drug allergies and appeared ideal.  I’m learning, however, that appearances can be deceptive.

The appointment was extremely rushed, with the doctor talking at a hundred miles an hour in a heavy accent.  I’d hardly slept and had travelled 70 miles south to another county on my own for the appointment.  As I have ME, this is massive undertaking and by the time I reached the hospital my head was so full with stimulation and fatigue and dizziness my ability to concentrate was almost zero.  I’d done an extensive history and list of symptoms for my GP, who then hadn’t sent them to the Consultant, so I had to start from scratch on a 19 year illness history from memory, most of which he hurridly dismissed as irrelevant.

Almost straight-away he diagnosed Chronic Idiopathic Urticaria, despite occasional hives being the least of my worries.  He seemed to accept that I reacted to everything I ate, but explained that I wasn’t reacting to food per se but that I had an autoimmune condition whereby my body was attacking my own mast cells.  And despite no mention of Mast Cell Activation Disorder, he then went on to describe it beautifully!  He explained that my mast cells were hyper-excitable and were de-granulating inappropriately, releasing over 25 chemicals into my blood stream, one of which was histamine which was causing many of my allergic-type symptoms.  He said that mast cell disease seemed to be more common in people with Ehlers-Danlos Syndrome and I wasn’t the first EDS patient he’d seen in his allergy clinic.  So far so good (ish).

I explained that I’d tried a low histamine diet, which had helped the food reactions substantially.  He completely dismissed the whole idea, saying no placebo controlled trials had been done on such a diet and he was fairly sure the decrease in symptoms were due to either the Placebo Effect or the fact that my diet is just more bland than usual, which often helps with Urticaria.  This was my first indication that the consultation was going to be less than helpful.

Skin Prick Testing

I was then told I was going to have skin prick testing for allergens, though he didn’t expect anything to show up as my condition wasn’t a true allergy.  He asked me what I’d like to be tested for, but as I absolutely wasn’t expecting this I couldn’t think of anything from the hundreds of bottles I was presented with :-(.  If I’d had my wits about me I would have requested testing for high histamine foods, like tomatoes and fish – what a wasted opportunity.  So I was tested for wheat, milk protein, casein (ie cheese), candida albicans, yeast, cat, dog, weed/grass/tree/birch pollens, dust mites and moulds.  And shock of the century, had a strong reaction to birch pollen and a milder reaction to dog!!!  The doctor was amazed too as he expected zero reaction, particularly as I’ve had pets all my life with no problems and have never had hay fever.  I was told that birch pollen allergy begins in child-hood and asked if I’d been born near woodland – er, nope, born near Wolverhampton where there is barely a tree to be seen.  So that’s all a bit of a mystery.  And, thankfully, I own a Miniature Schnauzer which are classed as anti-allergy dogs as they don’t shed fur and therefore dander.  My brother, though, has been allergic to dogs since child-hood so my theory that mast cell disease is hereditary has gained more weight.  The good thing to come out of the skin prick test is that I’m not allergic in the true sense to dairy, which was something I had long queried as, being vegetarian, I eat massive amounts.  I already knew I wasn’t allergic to wheat or gluten as I’ve previously had a stomach biopsy for Coeliac Disease.

Mastocytosis

He then went on to say that he was 50/50 on whether or not I could have full-blown Mastocytosis based on my symptoms, so he ordered a Tryptase blood test which I fully expect to be negative.  He does also want me to have a 24 hour urine test for N-methyl histamine, but that has to be done locally as obviously I can’t travel back to Preston to hand it in.  He did not, however, even look at my skin for signs of Urticaria Pigmentosa which I thought was extremely poor practice.  I showed him a photo I’d taken of the ‘bug-like’ blisters which I keep getting and he said he had no clue what they were, sorry!  No mention of testing for Darier’s sign, despite my life-long dermographism.  You absolutely cannot rely on the Tryptase test to rule out MCAD, as it usually only shows up in the 24 hours after you’ve had an allergic reaction and I’ve been avoiding anything which sets off my allergic reactions like the plague.  The skin is a vital indicator of cutaneous mastocytosis, and the fact my skin wasn’t examined, despite having various skin issues, was very bad practice.

I also showed him a photo of the reaction I’d had to a mosquito bite last year, and he said that I was obviously allergic to the saliva in mosquitos, sand flies, midgies, gnats and other biting insects.  Which could be true, but on the other hand an exaggerated response to insect bites is also an important indicator of Mast Cell Activation Disorder, which really he should know :-/

Drug Reactions

So, on to my multiple and almost total drug reactions which is the main reason for my appointment.  He said they were Multiple Chemical Sensitivity, and that a small proportion of people with M.E. have MCS.  Which again is true, but in my case is absolute bollocks.  If I had MCS I’d react to inhaled chemicals too, like hairspray, paints, fumes, household cleaning products, washing powders and a host of other things – but I do not.  I have zero problems with anything like this.  My only issue is with oral drugs – I can even cope OK with local anaesthesia and skin gels like Ibuprofen.  If I had MCS this would not be the case.  So, yet again, my drug reactions were completely dismissed and totally mis-understood.  I know they are part of Mast Cell Activation Disorder, but as he obviously had no knowledge of MCAD he was clueless on this aspect of the disease.  At this stage in the proceedings I tried very hard not to burst into tears and I am back to square one in trying to find someone to diagnose my drug reactions.

The next part of the consult was also mind bogglingly ridiculous.  He said that palpitations, anxiety and flushing following drugs weren’t part of a mast cell reaction, so he had no idea what those symptoms were all about.  O-M-bloody-G.  Palpitations and flushing are some of the main symptoms of Mastocytosis for God’s sake (you just have to Google it to know that), let alone MCAD.  If he’s a Masto expert how can he not know this?!!!  So he wants to refer me to an endocrinologist to check I don’t have any endocrine tumours.  For heavens sake, if I’d had a tumour for the past 15 years I’m fairly sure I’d be dead by now.  Then the consultation got even more bizarre, because he saw the flushing I get on my chest when I’m stressed/tired/hot (and by then I was all 3 and my stomach, chest and face were beetroot red and blotchy) and said that anti-histamines would clear that up, so he clearly thought they were a mast cell reaction.  WTF?!  I’m sure you can understand that, by now, my brain was fried and I was totally Confused.com 😦

Treatment

He wants me to try an H2-antagonist, but I can’t remember which one he said.  I asked him what would happen if I reacted to it and he said “oh, you won’t”, which shows how dismissive and uninformed he really is about drug reactions.  In the past I’ve been told it’s impossible to react to steroids and valium but guess what – my body violently disagreed.  I was not given an epi-pen in case I do react, so yet again I’m facing trying a drug at home, alone, with totally unknown consequences, some of which could be fatal or at the very least make me so ill I’m hospitalized (as happened on my last reaction) or make me bedridden for months.

There was some passing mention of the mast cell stabilizer Gastrocrom, but only if the anti-histamines don’t work, or if my Tryptase test comes back positive for Mastocytosis.

Conclusion

The upshot of the appointment is that I came away with a diagnosis of Autoimmune Idiopathic Urticaria, which was explained to me as an autoimmune mast cell disease.  I’ve Googled this and can find virtually nothing about it!  In my mind it’s just another name for MCAD as, from how it was explained to me, it fits MCAD perfectly.   A diagnosis of chronic urticaria, however, focuses totally on hives which rarely bother me at all, and dismisses totally my food and drug reactions which are anaphylaxis in nature (and potentially life threatening).  It cannot end there.

In advance, I’d made an appointment with my GP to discuss the consultation.  I explained that I wasn’t happy with the outcome and that we need to find someone else to see about MCAD.  I just don’t know who, and my GP is clueless as she’s never even heard of MCAD.  Where do I go from here?  Who do I turn to for advice?  I feel quite tearful at being left alone, yet again, in the mast cell wilderness.  We are going to wait to see the results of the tryptase test, and my GP will arrange the 24 hour 1-methylhistamine urine test (both of which I expect to be negative), then I have to start all over again to try and find someone to diagnose me properly.  But for now I’m exhausted beyond belief and will need some time to recover from yesterdays ordeal.

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9 thoughts on “Mast Cell Appointment

  1. Victoria Fenton

    Hi there…

    I have EDS and POTS with Mast Cell involvement and am in the UK. I found a route into the (private) medical network revolving around the EDS/Hypermobility unit at St John’s and St Elizabeth’s, St John’s Wood, London. This includes Rodney Grahame (god of all EDS investigation), Professor Christopher Mathias (a legendary neurologist who grasps completely the link between POTS and EDS), the gastroenterologist Professor Aziz (apparently very good, though my gastro care was held elsewhere – unsuccessfully, I must admit and I’m battling through chronic malnourishment and digestive trauma still) and…

    They link through to the amazing Immunologist Dr S. Seneviratne. He is both private and NHS, works through the Lindo Wing, St Mary’s Paddington and also NHS through the Royal Free. He grasps the variability of MCAD, the link to EDS and POTS, the craziness of symptom patterns and the questionable capacity for treatment. He uses Sodium Cromoglicate, antihistamines and then Ketotifen – he will test you thoroughly for levels of histamine, DAO and tryptase etc. and ensure his approach is the correct one and that you are not missing other immune issues (Lyme, unresolved Epstein Barr re: your M.E. etc.) He’s worth a shout, in my opinion, and if you still need further confirmation/assistance re: MCAD, mastocytosis, MCAS etc. for you.

    Hope that helps a little.

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    1. bertieandme Post author

      Thanks so much for this information Victoria, really appreciate it as I’m sure others reading the blog will 🙂 . My biggest problem is that I live near the Scottish border and am on my own, with no-one that could help me get to an appointment in London (I’d have to stay overnight as it’s so far away) – I’m just too unwell to undertake that kind of mammoth journey alone. I’m so envious of people who live in the south as their access to health care is so much better than here in the north (let alone poor people in Scotland who have no access to MCAD specialists at all).

      I’ve asked my GP for a referral to a doctor in Manchester – I was given his name by Mastocytosis UK and they have requested that I remove his name from this comment – for a support group I don’t find that at all supportive but if they want to keep good doctors secret so that no-one has a clue who to be referred to for help I guess that’s their call. There’s a huge need for doctors to work together in the UK – for those with MCAD and EDS we need a team of rheumy, physio, gastroenterology, pain specialist, POTS specialist, allergy/immunology and dietician! They don’t all need to be in the same place necessarily, but they do need to speak to each other and have a ‘case conference’ about patients like us with complex needs. Sadly this just doesn’t happen.

      I hope you find the answers you need re your stomach issues – for people with the double whammy of EDS and MCAS gut issues are often quite severe and hard to treat 😦 .

      Jak x

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    2. Jodi owen

      I have EDS-C, POTS and am being assessed for mast cell involvement too. I live in the UK and have seen both Profs Grahame and Mathias but I’d not heard of Dr. Seneviratne. Thank you so much for posting Victoria! 🙂 I thought I was going to have to go back home to the US; thinking I had exhausted the options I thought were available to me.

      Jak: Have you seen this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/pdf/1756-8722-4-10.pdf
      Perhaps it might help your GP understand more about therapeutic options. Jo

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      1. bertieandme Post author

        Hi Jodi

        Thanks so much for posting the link, very interesting 🙂

        I know someone else as well as Victoria who’s seen Dr Seneviratne and said how good he was and that he confirmed her diagnosis of MCAD (though she paid to see him privately). The other excellent option for London based NHS referral is Dr Clive Grattan for MCAD – I’d say he’s the leading mast cell doctor in the UK. Not sure how much he knows about EDS though but if you’ve already seen Profs Grahame and Mathias it sounds like you have your EDS covered.

        I’m going to compile a list of good doctors in all these areas and put it on the website as I know referrals are something that people really struggle with.

        Jak x

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  2. Emma

    Jak- was this guy Dr Rudenko that you saw? I actually ended up seeing him last week in London. I had wanted an opinion on low-dose immunotherapy (which had been recommended by the Breakspear Hospital) as Dr Seneviratne hadn’t really been able to advise in this respect. Dr R knew quite well what it was and very strongly advised against it. But then he also dismissed my being on a low histamine diet, which i found odd to say the least!

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    1. bertieandme Post author

      Hi Emma

      It wasn’t Dr Rudenko, no. It was a weird appt, in that in some ways he explained mast cell disease perfectly, then in the next breath dismissed me having it! There seems to be so much confusion about MCAD in particular – I do wish the world leaders in this field would get their act together and agree on a submission to the World Health Organisation so that this disease can be formally recognized. I fell it would help the situation a lot for patients.

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  3. mothernurture

    I’m currently looking around for a proper diagnosis of exclusion of MCAD and was referred privately by my GP to an immunologist that was also recommended by the mastocytosis support people. My apt was very similar to yours in some ways. He described how my Mast cells were activated due to a drug I had taken last year, but totally refused to discuss mastocytosis or MCAD with me – it was a very rushed apt and he did a skin prick test, which despite me being on higher than normal doses of cetirizine still reacted strongly to everything, especially histamine – I even reacted to the negative control (dermographism?). He insisted on calling M.E chronic fatigue and said my current issues with mast cell activation would wear off once I had stopped taking omeprazole (yes I have severe GERD too, but he said this wasn’t or couldn’t be related to mast cells!!) and had been on higher doses of anti histamine for a few months. He prescribed Ranitidine instead of omeprazole, but like you I am scared to take it as I have had so many drug reactions. I also cant take steroids as I get severe steroid psychosis on only small doses. Sorry for the rant, but was very disappointed in my consult. I asked him how to proceed with drugs in the future and he said I would ‘have to be careful for the rest of my life’ – what the hell does that mean?

    Three days later I was diagnosed with HEDS by an NHS rheumy – who dismissed it as unimportant. She did however wonder if I had MCAD – and has tested Tryptase, but said if that is negative then I don’t have it and also admitted she had never diagnosed anyone with it (I didn’t suggest the diagnosis to her she came up with it herself).

    What a mess! I live in a remote part of Wales, with awful healthcare and clueless GP’s. My breathing problems are a nightmare and I am now reacting to more and more things (newspaper print, dust severely, foods, perfumes etc etc).

    Great to be able to connect with others who are suffering, but so sorry that we all are.

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  4. Cheryl B

    The medical profession needs an enema. I read so many stories of specialists who have no clue about stuff we patients can learn about with a bit of Googling. My son and I have all the symptoms of mast cell activation disorder, we’re crippled, my son has life threatening cardiovascular instability. i used to be a clinical physiologist, I have an IQ in the 99th percentile and years of experience in medical research but still the gits dismiss everything I say with a roll of the eyes and much hostility. Even when I provide information from medical databases and physician guidelines. I’m sorry to shatter the illusions of those who admire their consultants as Gods of whatever syndrome, but take it from someone who knows THEY DO NOT KNOW WHAT THEY’RE TALKING ABOUT MOST OF THE TIME, certainly when it comes to mast cell disorders, or Lyme disease, which is the COMMONEST VECTOR BORNE DISEASE IN THE NORTHERN HEMISPHERE and which is known to cause MCA. And for which there is no reliable lab test. Blinded by their own magnificence, they waffle and bull-cack us all. To shatter more illusions, there is no such thing as ME or fybrobloodymyalgia, they’re just meaningless labels applied to difficult patients with too many symptoms for doctors to take seriously. It’s more acceptable than calling it silly bitch syndrome, the favoured term of an eminent physician I once worked for. I’m not saying people with this label aren’t ill, quite the opposite. I’m saying we have a serious life altering illness which is not being taken seriously by the medical profession. These labels are termed, by the profession itself,’ waste basket diagnoses’ because you apply the label and ditch the patient in the bin, offering only such insults as cognitive bloody therapy. There’s an excellent book about basket cases, search that term…

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    1. Jak Post author

      Hi Cheryl

      I hear your anger and frustration and share it. This post was written 3 years ago, and luckily I saw Dr Seneviratne and did get a proper MCAD diagnosis although it cost me an arm and a leg, but until then I was just treated like a loony tunes and dismissed.

      I’ll have to disagree on ME being a non-disease though. I have ME and know it’s a disease in its own right. I know when I’m having a bad ME day, as against a bad EDS or MCAD day – the illness is very different although shares some symptoms. ME has been contaminated by Chronic Fatigue Syndrome though – don’t get me started on that! I got ME 22 years ago, when getting diagnosed was extremely difficult (as opposed to today, when it’s a dustbin diagnosis given out to any Tom, Dick or Harry). My friends diagnosed at that time are all still ill with ME and our symptoms are identical. I do think ME is a type of mast cell disease though – see my Canary post if you haven’t already: https://mastcellblog.wordpress.com/2013/11/12/canary/

      I agree with you about Lyme. I don’t have Lyme disease as I got ill in the middle of the ocean, no ticks in sight, but I do have friends with Lyme and it’s one of the most horrendous, misdiagnosed, ignored and untreated diseases of our time. Hopefully John Cauldwell with all his money and influence can turn things around for the Lyme community.

      I do hope both you and your son can get some help for you mast cell disease. Dr S is the only person in the country I’d see about it so it’s an option if you are able.

      Best wishes
      Jak

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