Mast Cells in M.E.

This month a two day summit was held in America for clinicians working in the field of CFS/M.E. and long-time advocates and ME Doctors David Kaufman, Charles Lapp and Susan Levine all discussed the fact that they are now suspecting mast cell activation as either a cause, effect or perpetrator of the disease – their views are outlined in this piece from Medscape.  Having thought this for five years now I hate to say “I told you so” but……..well…………I told you so 😉

All joking aside, I am as convinced as I can be that mast cells play a role in M.E.  Having followed research on the illness now for a quarter of a century it’s the only theory I have come across that even remotely fits every aspect of the disease as outlined in my Canary post.  And in my world, if it looks like a duck and quacks like a duck, chances are it’s probably a duck.  I may be proved completely wrong, but at the moment with the knowledge we have my feet are firmly in the mast cell camp.

The link to the Medscape article was posted on the ME Association’s Facebook page and seemed to ring a bell with quite a few patients.  They all then, naturally, wanted to get tested for mast cell disease in the hopes they would be cured.  I wish it were that simple.

Although I believe mast cells are implicated in M.E. that does not mean I think M.E. is just another name for Mast Cell Activation Disorder.  MCAD is a distinct disease entity.  You can have MCAD on its own, you can have MCAD alongside other diseases like Ehlers-Danlos Syndrome or M.E., of if you’re unlucky you can have both or in my case all three.  Treating the symptoms of MCAD (there is no cure) will do nothing to help your M.E., at least not in my experience.

If mast cells are implicated in M.E. why doesn’t treating the underlying mast cell disease help?  Good question.  I’m not a Doctor or a Research Scientist and even if I were I probably still wouldn’t know the answer.  MCAD was only discovered as a disease a decade ago and we currently know very little about it.  Treatments are available but they’re crude and even leading Doctors in the MCAD field admit they are limited in the ways they can help.

The focus is often on Histamine in respect of MCAD, but it’s only one of 30 chemical mediators expressed by mast cells so is only a tiny part of the MCAD puzzle.  We currently only have the capability to test for half a dozen of the 30 mediators (and in the UK only have the means to test for a couple), so we have a very long way to go in being able to accurately test for mast cell activation.  Even if excess histamine is found to be present it binds to four receptors in the body (at least, we only currently know about four) and we only have drugs to target two of those receptors (H1 and H2), so if H3 or H4 receptors are implicated in M.E. we can’t currently do anything about that.

Being treated for MCAD probably saved my life, but it had little effect on my M.E. with two notable exceptions.  The horrendous insomnia which has plagued me for the 24 years I’ve been ill was helped dramatically when I no longer had stimulating histamine in my brain, and the back pain from which I’d suffered for 30 odd years improved by about 60%.  But I still have M.E. in all its fluey, achey, brain fogged, POTSy, sore throated, weak muscled, post exertional malaise glory.  It’s a bugger.

It’s hugely difficult to get an official MCAD diagnosis here in Britain and most people end up having to go down the very expensive private route as MCAD still isn’t officially recognized here in the UK so isn’t funded on the NHS.  There are a couple of NHS Consultants who might see you but in practice only if you have severe disease and have classic MCAD symptoms like flushing, hives and a history of anaphylaxis which has been confirmed isn’t due to allergies.  Having received your diagnosis, treatments are limited and in my case the very fact I have MCAD and my mast cells reject drugs on a grand scale means I have anaphylaxis to the tablets needed to treat my anaphylaxis, which would be hilarious if it weren’t so scary.

To anyone reading this who wants to rush out to see an MCAD specialist trust me when I say you’re heading down a difficult and potentially expensive road with no real destination, so think carefully about whether or not you want to spend your energy doing that before you start.  I’m not saying don’t, just that it’s probably not going to help your M.E. so unless you have clear symptoms of MCAD and are debilitated by those it will all be a bit pointless.

Having said all that I’m still hugely excited by the fact that Doctors are picking up on the fact that M.E. and MCAD might be related.  It’s no coincidence that Doctors seeing Hypermobile Ehlers-Danlos patients were finding that a large sub-section of those also had MCAD, and it’s no coincidence that many of those also had a diagnosis of M.E.  The hEDS/POTS/ME triangle is well known about in the patient population and the underlying common denominator appears to be mast cell activation.

 

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Christmas roundup

Christmas Eve.  I can’t get my head round that.  It seems like days ago that I had my 50th birthday, not 3 months.  Seriously, a time thief lives in my house 😉

I’ve had a lovely, calm, peaceful week.  Looking back I have no clue what I’ve been doing but it seems to’ve involved eating lots of Pringles and Wine Gums which I’m going to regret when I finally get out of my elastic waist trackie bottoms and into my jeans in the New Year!

I went with my Dad to get the results of the MRI scan he had done on his back.  The good news is there is no stenosis.  The bad news is there are multiple bulging discs which are compressing the nerves, hence the pain and weakness in his legs.  Treatment begins with “conservative management” ie physio to strengthen the muscles.  I can’t see it working because until four months ago when his leg started to give way he walked 6 miles up the fells every week and has done for the past twenty years, so he has the strongest legs of any 80 year old I know.  A few stationary bike exercises are going to be child’s play to my Dad.  But you have to play the game and do what the doctor suggests before he’ll consider referring you on to a specialist.

Both my dog walkers are now on holiday until the new year, which means I have to take Bertie out twice a day.  It’s a killer, even going on my scooter.  I have to get bundled up like I’m going on an expedition to the North Pole, uncover and unchain my scooter, get Bert’s harness and lead on, actually go on the walk, recover and rechain my scooter, get all my kit back off again and wipe Bert’s paws (the mud in my village atm is ridiculous), which takes a good hour for a half hour walk.  And repeat five hours later.  It’s exhausting  and I come back with my brain so foggy I can’t form a thought, not that the mutt cares 😉

Today I am making some mushroom soup and a lemon meringue pie for our Christmas lunch tomorrow.  I gave up doing a huge roast dinner several years ago because neither my Mum nor I are up to it, so we have soup, sanis and a pudding on Xmas day and then go out for our roast dinner on Boxing Day to a lovely restaurant.  It works for us.

I shall leave you with my annual carol, sung to the tune of Once In Royal David’s City.  Whatever your Christmas holds I hope it’s filled with love and laughter 🙂

Once in snowy North West England,
Lived a lonely, country girl
Mast cells that were sorely rampant
histamine that made her hurl
Jak she was that poorly child
M-CAD was that illness vile.

Subluxations sent to try her
Joints all wandering out of place
Splints and braces plus her scooter
helped her join the human race
Jak she was that poorly child
E.D.S that illness vile

Monthly torture from her cycle
makes her feel that she is cursed
Menopause that drives her crazy
She’s not sure yet which is worse
Jak she was that poorly child
Endo is an illness vile

Nervous system going bonkers
Pins & needles all the time
She would kill to just get tipsy
she’s allergic to the wine
Jak she was that poorly child
POTS doth make an illness vile

She is tired beyond all reason
Half her life is spent in bed
That Hugh Jackman is her Carer
fantasies just in her head
Jak she is that poorly child
M.E. is an illness vile.

Doctors told her she was crazy
symptoms were all in her head
She just hoped they’d catch her illness
or that they would drop down dead
Jak she was that poorly child
Chronic illness truly vile.

Blood tests showed she’s truly sickly
She had known this all along
Blew a raspberry at the doctors
who all said there’s nothing wrong
Jak she is that poorly child
She has proof now she can smile!

 

HIT v MCAD

I often get asked on my blog what the difference is between Histamine Intolerance and Mast Cell Activation Syndrome, whether there is any link between the two and how to tell if you have one or the other (or like me, both!).   The answer is we know very little about Histamine Intolerance, and not a whole lot more about MCAS, and virtually zero about the two conditions in tandem.

I have no medical qualifications and am not an expert in either disease, so I can only write about my own experience and what I was told by the Consultant who diagnosed me (arguably the UK’s leading expert on both conditions).  Knowledge is an ever changing thing and what I know now may obviously change in the future as more is discovered about my little understood diseases.

I’m as certain as I can be that I was born with Mast Cell Disease.  I have photos of myself as a very young child where I am flushed bright red and my Mum tells me I was dermographic from a tiny baby.  She didn’t think much of it, however, as she was dermographic and got wheals and hives from tight clothing so she thought it was normal, just as she thought my “double jointedness” was normal and my velvety elastic skin was normal because she too was hypermobile and had stretchy skin.  As far as I’m concerned my MCAD is hereditary and genetic.

Flushing as a 3 year old child.

As most of you know, people with Ehlers-Danlos Syndrome are massively more at risk of MCAD than the healthy population but quite why is still a mystery.  There are several theories but they are just that – theories.  The truth is no-one knows.  We also don’t know if MCAD causes EDS, if EDS causes MCAD or if neither causes either and there is another mechanism at play altogether.

My mast cells are activated by all manner of things which the mast cells in a healthy person would rightfully ignore.  Heat, hot water ( very itchy!), cold, cold water (ouch and double ouch!), stress, hormones, some pollens, alcohol, some animals, emotions (particularly excitement), strong winds, exercise, just about all drugs and a host of other situations cause my mast cells to lose the plot, leading from mild problems like nausea or feeling fluey to full blown anaphylaxis and everything inbetween.  But until the age of 44 I could eat whatever I liked and I loved my food.  For the decade I was bedridden with severe M.E., and could do virtually nothing but stare at the ceiling all day, food was my biggest pleasure and I looked forward to mealtimes like an oasis in a burning desert.

Everything changed one day when I was 44 and suddenly started passing out every time I ate.  This was the start of what I discovered was Histamine Intolerance and for me it felt totally separate to my MCAD.  Very little is know about HIT but it’s thought to be caused by a lack of, or badly functioning, enzymes called Diamine Oxidase (DAO) and/or Histamine N-methyltransferase (HNMT).  My HIT was brought under control in about 6 months purely from changing to a low histamine diet, but it’s not ‘cured’.  I still have to maintain a low histamine diet otherwise my symptoms start to creep back and very soon I’m reacting again to everything I put in my mouth (histamine is part of the digestive process for everyone but my poorly enzymes can’t effectively deal with it, so it’s vital I keep my ingested histamine to a minimum).

So, for me, there are some vital differences between my MCAD and my HIT:

• HIT is only related to what I eat or drink.  MCAD is related to my wider environment, both external (eg pollen) and internal (eg emotions).
• HIT developed in middle age.  MCAD has been there since birth.
• HIT causes anaphylaxis-type symptoms only (eg drop in blood pressure, palpitations, nausea, vomiting, fainting, flushing).  MCAD too causes anaphylaxis but also other symptoms (eg itching, dermographia, hives, swelling, sneezing, migraine, pain).
• The symptoms from my HIT subside within 2 hours of eating.  The symptoms from a mast cell flare can last days, weeks even months – mast cell activation perpetuating mast cell activation and causing a neverending vicious circle.

As far as I know no link has been established between HIT and MCAD.  None of the major papers written by world experts on mast cell disease mention HIT as part of the puzzle which, if HIT were a major cause or perpetuating factor of mast cell degranulation, you would think they would.  I’m not saying the two aren’t connected because I have no clue, but for me they feel like very separate entities and my Consultant diagnoses them as two distinct and separate diseases.  That they both involve histamine is intriguing (though the mechanisms are vastly different), but we have no idea if people with MCAD have a higher incidence of HIT than the general population because no data on this exists.  It may just be coincidence if you have both diseases or it may not.  It may be that mast cells degranulate as part of HIT or it may not (I suspect not but that’s just based on my own experience).

When I’m having a mast cell flare, my HIT does appear to worsen.  However, I personally don’t think this proves a causal link.  What I suspect is happening is that my mast cells are producing excess histamine which my body is already struggling to cope with, so when I eat and even more histamine is produced from the act of digestion it causes overload and I get symptoms after eating that I wouldn’t get if my mast cells were behaving themselves.  So food/digestion isn’t causing mast cell degranulation, which is already happening from other causes, it’s just adding to my body’s histamine excess.  I may, however, be totally wrong.  No-one knows what’s happening yet and it’s not an area anyone is researching as far as I’m aware.

There are sites online which appear to contain authoritative and convincing information linking HIT and MCAD but I can find no research, and therefore facts, on the two conditions and none of the articles I’ve read contain links to research papers.  So as far as I’m concerned information linking the two diseases is based on nothing but speculation and guesswork and you all know how I feel about that 😉

So, that’s my take on HIT and MCAD but of course my experience may be different to yours.  According to my Consultant, you can have MCAD without HIT, you can have HIT without MCAD but you can also, of course, have both.

 

 

New Test for Histamine Intolerance

A friend pointed me towards a link they’d seen in their Facebook news feed about a quick test being developed in Germany which anyone could use to measure the histamine content of their food. Can you imagine how absolutely brilliant that would be??!  To know that the food you are eating is actually low histamine, as against guessing its histamine content with nothing but your gut instinct to go on which is the situation at the moment.  It would be HUGE and totally revolutionize my, and thousands of other HIT sufferer’s, lives.

The FB link had come via Genny Masterman’s Histamine Intolerance website. I really like Genny’s site because we have views about HIT in common, for example this post about not believing all the crap online about histamine in foods and low histamine food lists, our distaste at the profiteering which goes on in the histamine world and the money that is being made from people’s suffering, and also that receiving a proper diagnosis (difficult as that may be) is crucial – you cannot diagnose yourself off the internet for heaven’s sake, not least because you could have some other disease which needs totally different treatment. Maybe it’s a  British thing but Genny just calls a spade a spade and there’s no psycho-babble airy-fairy bullshit to wade through.

Back to the article on the new histamine test, the link to which can be found here in German, but which I’ve Google translated below.  Bear in mind though that HIT and Mast Cell Disease are two totally different issues as outlined in my post here.  If you’re expecting a low histamine diet to significantly help your mast cell disease you’re going to be sorely disappointed, though it may play a role in helping some symptoms.  For anyone who is confused about the role of a low histamine diet in MCAD please read my post on the issue here.  For anyone with HIT though (and I have both MCAD and HIT) this test could potentially be fantastic and I’ll be keeping a very close eye on developments.

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Testing instead of forgoing – Quick help with histamine intolerance

Article published 27/09/2017

In Germany, more than two million people suffer from a histamine intolerance. Heart palpitations, stomach pain or rash are the consequences. Tübingen researchers have developed a rapid test that determines the histamine content of food.

A glass of red wine, a long-ripened cheese, a few slices of Parma ham – these are culinary delights that do not pose a problem for most. However, people with histamine intolerance may respond to such foods with symptoms such as cardiac arrhythmia, gastrointestinal discomfort or skin rash. By means of a new rapid test, those affected can determine the histamine content of individual products before consumption. For them, this means a higher quality of life.

The danger can be almost everywhere. Almost all foods contain histamine in a lower or higher concentration. Products which are produced by long ripening or fermentation processes such as wine, fish, cheese or sauerkraut are particularly stressed. The histamine content varies greatly depending on the type and storage. Even one and the same cheese variety can have different histamine values. Histamine is involved as a messenger in the human body involved in the control of various processes such as sleep-wake rhythm, allergic reactions or inflammation. It is produced not only by the body itself, but also by many foods. The substance is usually degraded by enzymes in the intestine. In case of intolerance this degradation is disturbed, so that too much histamine accumulates in the body.

Very limited quality of life

Histamine intolerance can manifest itself in a variety of allergy-like symptoms. These include migraine, anxiety, swollen eyelids, eczema and gastrointestinal discomfort. A clear diagnosis is therefore difficult. The symptoms usually occur two hours after the meal and usually last for half a day. If they want to be safe, they must adhere to a strict diet. “The quality of life is severely limited and can lead to shortages, so it is important to help,” says Christoph Pfefferle, who is currently preparing the founding of ELEFA Bioscience GmbH, which has developed the rapid test for the determination of the histamine content of food ,

So far, it is only in the laboratory how much histamine contains a certain foodstuff. With the new rapid test, people with histamine intolerance can quickly and easily check a product on the spot. The test has the size of a ballpoint pen. With a punching device at the tip, the user can take small samples from the cheese. A special liquid dissolves the histamine from the sample. This is then given to an integrated test strip, which indicates whether the food contains no, little or much histamine. “The principle is similar to a pregnancy test. The result is within five minutes, “says Pfefferle.

However, the test can not give a binding recommendation as the tolerable histamine content is individual in each human being. “Those affected need to assess what they can and can not do on the basis of their experiences. And also take into account what else they have taken, “says Pfefferle.

Further application potentials

In higher doses, histamine leads to poisoning symptoms in all humans, so it can trigger a form of fish poisoning. An EU regulation therefore requires that traders are not allowed to sell fish products with an excessively high histamine content. With the existing technologies, a test can hardly be carried out on the spot, but the quick test could still inform the shopkeeper whether the fish is safe. The test could also be used in wine production. Wines with a high histamine content are considered to be inferior in quality and could thus be sorted out during the manufacturing process.

The rapid test was developed at the Institute of Natural Sciences and Medicine at the University of Tübingen. The idea was born at the “Innovationsakademie Biotechnologie” in 2010. The Federal Ministry for Education and Research ( BMBF ) invited funded researchers, experienced economists and creative cross-thinkers to develop new product and business ideas for this two-day creative event. The path from the idea to the finished product was then thought to be longer than initially at the Histamine rapid test. Without the EUR 650,000 funding from the BMBF for the necessary research and development work, there would be no prototype today. Now the new company ELEFA Bioscience is to lead the histamine test to market maturity. In the course of the coming year it is to be available in the trade. Then people with histamine intolerance could test their foodstuffs and then eat with a corresponding test result also thought-free.

 

Weekly roundup

It’s been a strange week with one thing and another.  My Step-Dad’s Mum, who is 103, has been in a brilliant care home for the past 4 years.  A couple of weeks ago she had a heart attack, but being as though she has a DNR (do not resuscitate) order she wasn’t hospitalized and was cared for in the home.  Ten days ago it looked like she was passing away but the nurse inserted a drip and gave her antibiotics for a chest infection and she rallied.  I do wish the nurse hadn’t intervened because all it achieved was to drag her dying out.  Five days ago the Doctor went to see her and took the drip and meds away.  My Dad has sat faithfully by her bedside ever since and she finally passed away last night.  She’s never liked either me or my Mum for reasons unknown and I’ll go as far as to say she’s been a right bitch to both of us so it’s not like I’m sad about her death, however my Dad will be devastated.  No matter how old or how ill, our Mums are still our Mums.

We had a couple of dry(ish) days at the start of the week so I managed to get a few much needed jobs done in the garden.  It’s rained here in Cumbria almost non-stop for about 6 weeks now and was so cold last night I’ve woken to condensation on my bedroom windows.  FFS, does it not know it’s the middle of bloody summer??!

Thursday I took a friend from Camera  Club to photograph red squirrels at a secret location I don’t shout about.  They’re so cute I could watch them all day.  By mid afternoon I’d started with tummy pain and was a bit flummoxed as to what could be causing it.  It got worse as the day progressed, which is all I needed as I was having 5 other camera club members round to my house in the evening for a meeting about next season’s programme.  The meeting went ahead but I was feeling pretty ropey and couldn’t wait for them all to leave so’s I could get into bed with a hot water bottle.  My period pain always starts initially with stomach pain, but I thought I was only on about day 9 or 10 of my cycle so it couldn’t be that.  Er, wrong!  Woke the next morning to Aunt Flo and when I checked my diary I was actually on day 24 of my cycle – doesn’t seem like two bloody minutes since the last one!  Consequently I was awake for most of Friday night with awful endo-related period pain and a migraine which hung around through most of Saturday.

My lovely furry child Bertie turned 9 this week 🙂  I adopted him when he was 2½ and have no clue where those six years have gone!  I also have no idea what I did with my time or money before I got him but wouldn’t swap him for the world.  It’s because of him I got into photography and for that I will always be grateful.  He is my loyal and faithful companion and as I type this, sitting up in my bed, he is asleep between my knees with his head resting on my thigh.  I love him to the moon and back even though he pinches food the second my back is turned, eats sheep shit then licks my face and barks so much he’s in danger of perforating my eardrums 😉

Today is forecast to be dry and, dare I say it, even a little bit sunny so I’m palming the dog off with my Mum and taking my photography hide down to the river.  In the past 12 months I’ve managed to get good pictures of a red squirrel and a heron, both of which have been on my bucket list for the past 4 years but I still haven’t managed a picture of a Kingfisher.  I know where one is currently perching every day at noon, so I’m hoping if I keep going to where I know he hangs out I’ll eventually manage a shot.  Wish me luck!

No time to cook

It’s been some considerable time since I wrote anything diet/food related on my blog, so I thought I should explain why.  When my MCAD finally exploded back in 2012 I was having anaphylaxis every time I ate anything and sometimes after just drinking water.  I have never been so terrified in all my life and honestly thought I would die, especially as the Doctors I saw just looked at me like I was nuts and told me it wasn’t possible.  I was given diagnoses like gastritis and IBS, which I knew were absolute bullshit but I was told “it’s not cancer” and I should be grateful, then just left to get on with it.  Thank God for the internet and eventually receiving my MCAD and HIT diagnoses from Dr Seneviratne.

For the first two years following my diagnoses I was naturally obsessed with food.  I spent months wading my way through the information online on low histamine diets, adapting recipes to be low in histamine, experimenting and finally finding a plan I could stick to and which (on the whole) controls my symptoms.  I am so grateful to no longer pass out after I have a meal I can’t even tell you, though I’m not always symptom free.  That’s because my mast cells react to a whole host of things other than food, so it depends on any one day how full my histamine bucket is as to whether the mere act of digestion (which produces histamine!) sets off a reaction or not regardless of which food I’m eating.  But the symptoms aren’t anywhere near as extreme as they used to be and, although still not pleasant, are liveable with.

After my condition stabilized I really began investigating low histamine foods and made the shocking discovery that hardly any foods have been tested for their histamine content and every diet online is based, for the most part, on guesswork.  It rocked my world really because my life depends on keeping histamine at bay, yet the information on which I was basing my diet couldn’t be trusted.  I could still be eating ‘safe’ foods which are nothing of the sort and may have been cutting out foods, like egg whites, for absolutely no good reason!  What a bloody nightmare.  So I began experimenting again and discovered I don’t react to baker’s yeast, small amounts of lemon juice, vinegar, stone fruits or fresh berries though chocolate is still off the menu *sob*.

By now it’s 2016, I’m in peri-menopause and am having to contend with extra symptoms on top of the dozens I already have.  My Mum has been diagnosed with severe COPD and Emphysemia, is in heart and kidney failure and has become an alcoholic, while my Dad is in the early stages of Dementia.  They both need help with daily living and the job has fallen to me (quite why it hasn’t fallen to my 3 healthy brothers, their wives or adult children, three of whom ironically work for Home Care Agencies, is another story).  It’s hard enough keeping my own life and home going and I’m finding keeping two homes and three lives going tough.  I’m so busy I meet myself coming back, then am so exhausted from all the extra work and my rampant hormones I literally can’t think straight.

These days I no longer have the time or energy to spend hours in my kitchen thinking up and experimenting with new recipes.  In fact, I spend one day a week cooking then shove what I’ve made in the freezer as I don’t have the time or energy to cook myself dinner every day, let alone anything extra.  In any event, I’ve become quite disillusioned with ‘low histamine’ diets because neither I, nor anyone else, have any idea of the histamine content of individual food items and I now use all sorts of ingredients in my dinners which would cause outrage if I were to put them online.  For example, this week I happened to be in Sainsburys and bought 2 jars of pre-made sauces – don’t fall off your chair in shock 😉  One contained concentrated lemons and the other contained additives!  I know for a fact I won’t react to either, yet if I put them on my low histamine shopping list I’d be crucified, because according to the lists online they contain things I shouldn’t be eating.  Only of course no-one knows if I should be eating them or not because they haven’t been tested for histamine – try telling the low histamine zealots that though!  Obviously my ‘low histamine’ diet has helped my symptoms enormously so obviously some foods are higher in histamine than others, but whether I needed to have cut out all the foods I have is anyone’s guess.  My reduction in symptoms might literally be down to cutting out spinach, cheddar cheese and fish and I’ve been unnecessarily cutting out 30 other foods for no good reason.  Or it might be that I absolutely have to cut out 30 foods in order for my diet to be low in histamine.  I have no idea and neither does anyone else.

According to people like the Low Histamine Chef and others I shouldn’t be eating low histamine anyway, but I should be eating anti-inflammatory.  Only there’s about as much robust evidence for anti-inflammatory diets as there is for low histamine diets.  Point me to the research on people, not rats, that measures inflammation after ingesting a particular food and I might change my mind.  Only of course it doesn’t exist.  It’s as impossible to measure inflammation in our bodies after we’ve eaten a specific food as it is to measure histamine in our bodies after we’ve eaten a specific food.  It’s all such bullshit yet is talked about by these self-proclaimed ‘experts’ as fact.  And just because they include research references at the end of their articles doesn’t make it fact either.  Does anyone actually read the research?  Is it a properly conducted, double blind, randomized, controlled trial which has been peer reviewed and published in a nutritional journal?  Because if it’s not it’s not worth the paper it’s written on.  When I was investigating low histamine foods, I discovered that the only reason egg whites were included in low histamine food lists is because of a tiddly trial done on mice in the 1950s, which was never reviewed or published.  The way food was made and stored in the 1950s bears no resemblance to the way food is made and stored in 2017, so quite why this pseudo half-experiment is quoted as fact in the low histamine world astounds me.  All this stuff plays on the absolute desperation of very sick people and it makes me furious.

It extends beyond the world of histamine though.  For years saturated fats were ‘bad’ for us as they raised cholesterol and gave us heart attacks, until it was discovered that actually heart disease is a much more complex issue, trans fats were much more unhealthy than saturated fats and the jury is still out on how big a role saturates play in plaque formation.  Then salt was bad for us, until it was discovered that eating too little might be as bad as eating too much, though again the debate rages on.  Now it’s sugar that’s the demon, until in 30 years time it will be discovered that without sugar our energy levels are half what they used to be or some other such nonsense.  If we’re honest, we know very little about digestion, diet and the impact what we eat has on our health, and I suspect genes and how we as individuals process food will turn out to be the determining factor for health, rather than the foods we eat per se.

I admit I’m no expert on food and the information here on my blog is simply based on my own thoughts and experience.  And my experience is that I am currently managing my symptoms OK with the diet I choose to follow and, due to changing circumstances in my life, I no longer have the time or energy to experiment with new recipes particularly when I’m not even convinced they are low histamine as I have no evidence to back that theory up.  So apologies to anyone reading my blog and hoping for loads of inspiring recipes and foodie facts.  Having said all that, I hope the information and recipes listed in the menus at the top of my site are useful in your own journey through the histamine maize and at least it’s all free and I’m not making money off the back of other people’s suffering.

A novel experience: part 5

By the time I developed M.E. I’d had a couple of regular allergic reactions to drugs.  The first to anaesthetic and the second to an anti-sickness injection.  These were well recognized reactions, if rare, and very different to the weird reactions I’d go on to develop as part of my mast cell disease.

Most Doctors only recognise full on anaphylactic shock, where your throat swells and you have problems breathing, but anaphylaxis can be graded from 1 to 5 (or I to IV depending on the Grading system used) and as my mast cell disease progressed I started having grade 3 anaphylaxis to just about every drug or supplement I put in my mouth.

My very first mast cell reaction back in 1994 was to alcohol, though I didn’t know it was an anaphylactic reaction at the time.  My second reaction was to a supplement and this time I was fully aware my body was in meltdown though of course didn’t know why.  My Mum, who we are now almost certain has both EDS and MCAD, had quite often reacted badly to drugs so to me it was fairly normal and I really didn’t think much of it.

This exert from my book describes this first serious mast cell reaction.  I’d had ME for about 12 months at this stage and was having awful problems sleeping.  My GP wouldn’t prescribe anything as she said sleeping tablets were addictive, so I thought I’d try something natural.  After all, what harm could it do?

“I swallow the little white pill I’d bought at the Health shop, wincing as it makes its way past my swollen tonsils, the result of yet another throat infection.  The tablet contains something called GABA, which is apparently made naturally by the brain and I’d read in a magazine can cure insomnia.  I’d eat rat poison if I thought it would help and as I pull my sleep mask over my eyes and push in my earplugs, shutting out all external stimulation, I offer up a silent prayer for seven hours of heavenly uninterrupted kip.

Twenty minutes later far from being in the land of nod I’m starting to feel a bit peculiar.  My whole body is tingling and I feel hot, ridiculously hot, so with an irritated sigh I sit up and turn on the bedside lamp, crawling forward on the bed so I can see myself in the dressing table mirror.  I’m shocked to find an ashen face with flaming cheeks staring back at me and I can see my chest inside my pyjama top is mottled scarlet red.  Hmmmm.    My sleepy brain is just starting to register that something’s not quite right when every nerve in my body explodes with pain, pricking my skin with a thousand razor sharp needles.

Owwwa!  What the hell?!  I’m wide awake now and more annoyed than worried, realizing my chances of some shut eye are diminishing by the second, but as I try to exhale my frustration I’m kicked in the chest by an imaginary horse, the thump of its hooves a physical blow which steals every ounce of air in my lungs.   The sensation is so real I slump over, my heart suddenly pounding ferocious beats which thud in my ears and all the while I get hotter and hotter until fire reaches my brain, a raging inferno which melts everything in its path.

Conscious thought is lost to the blaze and I hug my head protectively with my pyjama clad arms, rocking back and forwards to soothe the onslaught.  I’m obviously having a bad reaction to the GABA but it’s nothing like the allergic reactions I’ve had to anti-sickness drugs, which made my eyes roll in my head, or the reaction I had after my spinal surgery as a kid which caused my muscles to spasm so violently my back arched inches off the bed.  No, this is something new and I have no idea what’s happening.

I’m weirdly calm yet antsy with a sudden unstoppable urge to move, despite the fact my body is heavy with fatigue, so I start pacing the length of my bedroom, my heart battering against my ribcage, pain tunnelling along every nerve with each thudding step.  I’m not liking this God I tell my invisible Mentor, not liking it one little bit.  In fact, I’m freaking out so if you feel like a bit of Divine Intervention now would be a really good time.  God’s answer is to make me abruptly nauseous and I only just reach the bathroom before vomiting so violently I’m worried my stomach will rupture.

Three hours later I’m still pacing, a rhythmic voyage round the bed and back keeping my adrenalin fuelled body occupied while my heart does the equivalent of a sprint hurdle, my trudge broken only by the need to retch stringy bile into the toilet bowl.  Please make it go away God I beg.  I’m so tired, so very very tired and my tummy hurts.  My knees buckle and I stumble but despite overwhelming exhaustion I keep moving because when I stop the fire in my veins is so intense I don’t know if I can bear it.  It doesn’t cross my mind to dial 999 because it’s the middle of the night and anyway I hate hospitals and would only want to go to one if I were dying.  Which I’m not.  At least, I don’t think I am.  Corpses have to lie down and be dead and I’m far too wired to be that still.

I shiver uncontrollably, fat goose bumps lifting the hairs on my arms, but when I catch a glimpse of myself in the mirror my face is still alight with burning heat.  I wrap my arms round my ribcage, hugging myself for both warmth and comfort, then try some of the breathing the hypnotist taught me, in through my nose and out through my mouth, in a vain attempt to quieten my thudding heart.  It doesn’t work and I become so out of breath I see stars.

‘For crying out fucking loud!’ I stamp my foot hard on the laminate floor, angry that everything I try only seems to make things worse, then instantly regret my strop as searing pains shoot up my leg, sending shock waves rippling up my spine.  ‘And you can piss off as well!’ I tell the pain petulantly.

Indeterminable hours of pacing and puking later, as the streetlights are replaced by weak winter sunshine, the fire in my brain finally dies to glowing embers and my heart, after one final thumping finale, settles into its usual quiet, steady rhythm like nothing has ever happened.  Not quite trusting that the reaction might finally be over I sit tentatively on the edge of the bed waiting for my nervous system to complain, but although every inch of my skin is tingling like it’s plugged into the electric the sensation is just uncomfortable rather than agonizing.  Relief and crushing exhaustion suck the last ounce of strength from my muscles and I crawl gratefully between the sheets, my brain singed, my stomach raw, blissfully unaware I’d just had the first skirmish in a twenty year war with my immune system which would ultimately try its best to kill me.”