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.
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
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 😦
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.
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.