Tag Archives: mast cell disease

Weekly roundup

When your illness is being managed well you get complacent.  Cocky.  You do stuff that, when your illness isn’t well managed, you wouldn’t even consider because you think there will be no consequences.  I did that yesterday.

I’ve put quite a bit of weight on in the last couple of years and am over 9stone (126lbs/57kg) for the first time in my life.  I’m not eating or exercising any differently, it’s just middle age spread due to menopause and my metabolism slowing down.  I have my main meal at lunchtime because if I eat a large meal in the evening when I’m in bed it makes my reflux so much worse, then I have a sandwich or soup or whatever at night.  So I thought I’d swap my evening food for a Slimfast shake for a couple of months to see if I could shed a few pounds.  Big mistake.

All Slimfast basically consists of is vitamins, minerals and sweetener to which you add milk (which I tolerate well) to make a shake.  Perfectly innocuous right?  My mast cells didn’t think so and after only 3 mouthfuls had a complete hissy fit.  I’d forgotten how scary anaphylactic reactions are and how crap they make me feel 😟.

I’d already had a reaction to a new food this week, though it wasn’t the same type of reaction.  I bought a plain scone from Tesco, the ingredients of which shouldn’t have bothered me (I buy the Finest range wherever possible as they contain so much less additives etc.).  But they did.  My throat and tongue were prickly, tingly and itchy and my lips went slightly puffy.  I get the same thing if I eat anything with apples in, or the strawberry flavoured jam used in commercial doughnuts and biscuits.

Note to self: stick to what you know, even if you are so sick of eating the same old shit you want to scream.

Wednesday evening was our weekly zoom meeting at camera club.  It was our annual competition and I swept the board.  I should have been delighted but all I felt was fear.  After I started winning everything at my last club there was a lot of jealousy which turned into outright nastiness in some quarters and I do hope that doesn’t happen again.  I did get 4 lovely messages of congratulations, though, so at least some of the club members don’t hold my success against me.

I’ve succeeded in weaning my disabled friend off my help with his online grocery shopping and he had his first Tesco delivery this week.  He needed quite a bit of help sorting it out, which I don’t mind – I was confused.com when I first started online grocery shopping and it will take a few weeks for him to get the hang.  It felt fantastic to shed at least one of the huge responsibilities I’ve shouldered for the past 4 months.

Despite my warnings of infection and death my Dad is determined to go to the shops now lockdown is over, even though there is nothing he needs which is urgent or which I can’t get him.  So I’ve ordered him some masks to wear.  Initially I couldn’t get him to put one on, but when he saw a few other people using them he reluctantly agreed.  Why doesn’t he realize that at 80 years old he is more at risk than all the young people he sees out and about, and even if he got Covid and didn’t get sick he risks passing it on to my Mum who would die?!

As I’ve been getting a lot of migraines recently I decided to try a new pillow in bed.  I’ve gone for a memory foam for side sleepers which is supposed to be temperature regulating as I do get boiling hot in bed these days, and I tried it for the first time last night.  It felt very hard compared to my soft duck feather & down pillow and although it supported my head and neck well my back complained a bit as it was at a steeper angle.  The jury is out and I’ll just have to see how things go over the next week or so.

Today is Father’s Day and I’m taking my parents for a car picnic as it’s going to rain most of the day.  I feel absolutely knackered this morning and all I want to do is stop in bed all day and rest, however I’ll slap my usual smile on and try and ensure my Dad has a nice time because even though my parents drive me to distraction I know how lucky I am to still have them.

Stay safe my friends x

 

 

MCAS Update

Anyone who has been following my blog for a while knows that my mast cells hate stress.  My number 1 mast cell degranulator is drugs.  My number 2 is high histamine foods.  But my number 3 has always been stress of any kind.

When I’m under acute stress I flush, get pins and needles, severe brain fog, can have what feels like a seizure, oesophageal spasms which make me retch and retch, severe nausea, painful bowel cramps and just feel really unwell.

When I’m under chronic stress I break out in hives, itch all over, stop sleeping (histamine is wake promoting), stop pooping, start peeing like a racehorse particularly during the night, my pain levels significantly increase due to muscle spasms particularly in my back and I feel generally exhausted and run down.

Virtually the entire world has been under stress during the pandemic.  Acute stress in the initial weeks, and chronic stress as the months have worn on.   In the initial few weeks I was also dealing with my acutely unwell Dad and the bed bugs in my house, not to mention staying up til midnight each week to try and get a grocery delivery slot on which 5 vulnerable people were depending for food, and my sister-in-law started her chemotherapy about which we were all concerned.  It was a LOT to be dealing with, when I am unwell myself and on my own with zero support.

3 ½ months down the line I’m still doing shopping for 5 people, am having to solely look after my parents while having no help in my own home, eg. my cleaner, and am helping my very disabled friend with all sorts of issues.

By now, I fully expected to not be sleeping, be covered in itchy hives, be peeing for England, to not be able to poop and to be utterly exhausted.  And I am utterly, utterly, exhausted, but few of the other symptoms have materialized.  In particular, I have not had a single hive this entire time and am sleeping like a baby 😯.  It’s nothing short of miraculous.  My pain levels, however, are much worse and I have had a very sore throat and swollen glands for the past few weeks but these are symptoms I associate with M.E. and hEDS, rather than MCAS – I don’t get flu symptoms as part of my mast cell disease and the pain is very different to the pain from hEDS.  In fact, my hEDS is particularly bad at the mo, but that’s a post for another day!

Looking back, I’ve had mast cell disease since the day I was born but it didn’t explode and become a life-threatening issue until I was 44 – right around the time I began peri-menopause and my hormones started roller-coasting.  I am now transitioning into Menopause and am wondering if my now almost total lack of hormones is helping to stabilize my MCAS?  I can think of no other explanation as to why my mast cells aren’t having a total hissy fit to the massive stress I’ve been under during the lockdown.

Having said all that, there is one symptom which has been much, much worse lately and that is my migraines.  I am being tortured on an almost daily basis.  However, 6 weeks ago I changed the pillow on my bed so am wondering if my new pillow isn’t supporting my neck while I sleep.  I might look into ditching it and getting a proper foam support one instead.  Watch this space for the results of that.

I know that I will never be free from MCAS as I’ve had symptoms since I was a baby.  However, if it reduces to the point of just being an occasional or mild problem as it was when I was a child and young adult I’ll be a very happy bunny and it would be an interesting topic for researchers to look into.

Weekly roundup

My roundup is a little late on account of the fact I’d forgotten it’s Sunday.  Is it just me who has no clue what day, let alone date, it is?!

I’d got half my garden project done when freezing rain arrived, after 2 months of almost continual sunshine.  It was a relief in a way because I was in agony and beyond knackered, so it’s given me a chance to rest and recuperate a bit. I’m really enjoying the achievement of doing a task I’ve thought about for years, but it’s not without cost to my health.  I’ve had a couple of days this week where I simply haven’t been able to get out of bed, and have been so zonked I’ve gone back to sleep after lunch – something I never usually do.  On the plus-side, my continual migraine finally seems to have bogged off for which I am eternally grateful.

I learned that a small number of staff at the Medical Centre in a nearby town have gone down with Covid-19 this week.  How is anyone still getting infected when we’ve all been on lockdown for 2 months and practising social distancing for weeks before that?!  You’re not allowed to visit the Medical Centre if you have any symptoms of Covid, so it’s not like the doctors should have been coming into contact with the virus in the first place, and even if the odd patient was infected but asymptomatic all the medical staff wear full PPE (ie gloves, masks, aprons) and are fastidious about infection control.  Very odd.

My sister-in-law had another really bad reaction to her chemo on Monday, and has been ill ever since.  She usually picks up by about Thursday, but this time she hasn’t yet made it out of bed and nothing is helping the nausea/vomiting 😥.  Thank God her last one is in 3 weeks time, then she can switch to radiotherapy.

We had another Zoom meeting with my Camera Club on Weds evening.  This time we tried a competition, which went remarkably well but didn’t finish til 10.15pm – I was so wired afterwards it was well after midnight before I managed to go to sleep, but it was still a fun night and great to be doing something different.

Thurs I had a lovely long chat with my bestie on the phone.  We haven’t seen each other for over 2 months now and I’m really missing our lunches out and having a good old natter.  Now that lockdown has been relaxed we’re hoping to meet up in a public place sometime in the next week, when the weather has picked up again.

The rest of the time I’ve been trying to stay on top of the washing and cleaning, which has been tough when I’ve felt so exhausted.  I’ve given up on even trying to tackle the paperwork mountain which continues to grow on the hall table and can only pray it doesn’t contain something vital!  I really must get some photos together for a big international competition too, the closing date for which is Friday.  I currently need lightning for a picture I’m working on, so am trying to find ways of faking it – watch this space and pray I don’t electrocute myself or blow the house to smithereens 😉.

 

 

 

Stages of Illness

Being chronically ill is a journey and like any voyage we will all react differently to the experience depending on our personalities and circumstances.  I have friends who spend every waking moment online pouring over the latest research and keeping up to date with every ounce of information, and others who barely ever open their laptop.  Those who belong to every charity and support group going, and others who don’t want any part of the sick community.

During the first two years of being ill with M.E. I didn’t know much about the disease and quite frankly wasn’t interested.  I was going to get better soon and leave it all behind me.  I wasn’t so much in denial, as misinformed by a medical profession that told me that most M.E. patients recovered in 2 years and I didn’t see why I should be any different.

Then I became severely affected, was ill-health retired from work, my unused car was towed away and I realized I wasn’t going to miraculously wake one morning cured, so the next 6 years were spent searching for a way to get better.  I spent every waking moment in cyberspace, pouring over research.  Joined every group I could find, debated obscure theories and tried every wacky pill, food and therapy.   Looking back, the arrogance that I would be the one to find a cure when the best doctors and research brains in the world could find no effective treatment for the millions of ME sufferers worldwide, was staggering.   I was in complete denial and my life was basically on hold.

After 8 years of living with M.E., and with many of the ‘treatments’ having made me worse not better, I was mentally, physically and emotionally exhausted and finally realized that the definition of “chronic” illness is that it persists.  If there were a cure or effective treatment we would all know about it, and it was about time I started trying to live with the disease instead of fighting it.  I’d had time to deal with the grief of losing my old life and could finally accept the reality of my new one, while never giving up hope that one day a cure or treatment would be found.

26 years on I hardly ever give M.E. a thought.  I subscribe to the ME charity magazine, not particularly to read it because I’ve heard everything in it a hundred times before, but so that my subs help the charity.  Other than that I’ve mostly left the M.E. world behind.  My illness is fortunately stable, I know how to manage it and if some brilliant effective treatment is found it will be headline news – I won’t have to find it on a Facebook page or some obscure online messaging board.  I am successfully living with my disease.  I have also, if I’m honest, given up hope of a treatment being found in my lifetime and even if it were I’m fairly sure that after nearly 3 decades of the disease ravaging my body it has done irreparable harm.  And I’m OK with that, I truly am.

It’s also now a decade since I was diagnosed with hEDS, and 7 years since I was diagnosed with MCAD.  I reacted to both diseases in the same way as I’d reacted to M.E. – initial denial, followed by 2 years of frantic research and information gathering.  I was lucky in that I found ways of managing both fairly quickly, and didn’t spend quite so  many years as I had with M.E. being angry at my GP and consultants for not being able to ‘fix’ me, and am grateful I’m now fairly stable, though the menopause has buggered my hEDS up royally.  I simply get on with life.  I’m genuinely not interested in the latest research, information, treatments nor anything else.  I’ve been down that rabbit-hole before with M.E. and it’s a massive waste of my time and precious energy.  If my hEDS or MCAD weren’t stable it would be a different kettle of fish, and I’m sure I’d be searching for a better way of managing things, but as they are I’m not really interested.

For me, there came a point in my journey with chronic ill-health where I had to start living with my diseases and not existing in a grieving state of limbo.   My days fly by.  I’m busy with my home, dog, parents, friends and hobbies.  I don’t want to dwell on being sick for another minute of any day.  Life is short and I have to live it to the best of my ability within the confines of the circumstances in which I’ve found myself.  I am totally at peace with my situation.  Even as I write that I know there will be people reading it who will think I’ve somehow given up – I would have felt the same way 20 years ago.

M.E. is a very complex disease.  It’s not going to be cured by something you eat or don’t eat, by some tablet you can buy at the health shop, or by listening to an NLP CD.  Do people who get M.E. now not think we old-timers have tried all that shit already?  The same can be said of MCAD.  Thankfully I’m managing to control some parts of the disease by massively restricting my diet but it’s not cured.  I still wake with hives, I still have horrendous migraines, I am still dermographic, I still risk anaphylaxis with every tablet I take, or every new food I try, but then it’s a chronic disease – for me, one I was born with – so I’m not expecting to be symptom free.  I don’t read all the latest research or belong to any groups – I’m too busy doing other stuff and if someone suddenly discovers a cure or hugely effective treatment for Mast Cell Disease I’m sure I’ll get to hear about it.

What I’ve learned from living with chronic disease for nearly 3 decades is that the best you can hope for is to manage your symptoms well and to be at peace with your situation.  If you can find a way of doing that, which will be unique and different for all of us, you can have a life despite your situation.  It might not be the life you wanted but then very few healthy people ever get to live the life they truly want.   Life is, for the most part, a compromise for all of us.

Realistically, I also know that if I were completely cured of all my diseases tomorrow I would just be presented with a whole new set of challenges.  I’d have to find a full-time job at the age of 52 with no up-to-date skills or experience.  I still wouldn’t have a partner, and my parents would both still be old and sick.  I wouldn’t suddenly have a whole new set of friends to do stuff with, so would still be flying solo.  I would have to grieve and be angry all over again for everything that three decades of ill health had taken from me.  Post-ill-health life wouldn’t be some nirvana where my garden was wonderfully rosy.

We can’t judge each other for being at different stages of our illness experience.  I forget what the early years of being sick were like, and the newly diagnosed can’t hope to understand my life as an old timer.  Our coping strategies will also be vastly different.  Our homes lives and the amount of support we have, or don’t have, varies wildly.  Our economic status has a huge impact on our wellbeing, as do factors like whether we have children or are happily married.  A million and one variables will drive how we cope with our situation.  None are right, or wrong, just different.

 

 

 

Chronic allergic reactions

I hope I make sense in this post because I’ve not had much sleep.  My flippin’ neuropathy is ridiculous atm and I’m stinging and burning in equal measure – I blame the menopause but in reality it could be anything that’s set the flare off.

Anyway, I digress.  Following on from my anaphylaxis post I wanted to talk about chronic reactions, including prolonged anaphylaxis which you don’t seem to hear anything about.  Doctors seem to be taught that if a patient is in anaphylaxis you prescribe Benedryl and within a couple of hours the patient is good to go.  I sodding wish it were that simple!  For a start I’m allergic to antihistamines, and for seconds my longest anaphylactic reaction lasted for 3 weeks :-/

It started with my nemesis – drugs.  I was prescribed a new medication (I’ve reacted to so much I’ve forgotten which drug, but I suspect it was an antidepressant to help with pain and sleep).  I had the usual anaphylaxis symptoms which I talked about in my anaphylaxis post, for which I didn’t even bother ringing my doctor as we had no idea at the time I had MCAS and I was either treated like I was nuts or simply having a panic attack, and I just waited for the reaction to pass.  But the symptoms didn’t abate.  The pounding palpitations, muscle spasms, oesophageal spasms, retching and profound exhaustion just kept on going.  And going.  And going.  After 3 weeks of barely sleeping, barely eating and with my heart running like Usain Bolt 24/7, the pain in my chest was so bad it felt like I was being stabbed with a bread knife.  At 10pm one evening I rang the non-emergency NHS number 111 and was told I needed an ambulance in case I’d had a heart attack.  I knew I hadn’t had a heart attack, but was so ill I reluctantly agreed.  I was carted off to hospital, in the snow, at midnight, alone and in my pjs, only for them to tell me after 6 hours in A&E that of course there was nothing wrong with my heart.  No reason given for my symptoms and at 7am in the morning, in my pjs and with no money, I was discharged with no way of getting the 30 miles home.  The reaction did finally settle down, but I was really unwell and mostly bedbound for 6 months afterwards – anaphylaxis and M.E. don’t make good companions.

Oh, how I wished I knew then what I know now.  In particular, I wish I’d had my tryptase measured during any one of my two dozen anaphylactic reactions!  These days, of course, I’m very careful to avoid my triggers and thankfully haven’t had a serious reaction since I was diagnosed with MCAS so it’s not been possible to measure my tryptase when it’s elevated.  In any event, I’m not sure how I’d go about it.  I live alone 7 miles from my nearest health centre and when I’m in anaphylaxis I’m fairly sure it’s not safe to drive even if I felt well enough (which of course I don’t).  So how exactly would I get to have my bloods done?!  Do medics who tell you to have your tryptase measured during anaphylaxis even think about the logistics of that?

On top of anaphylactic reactions, I also have chronic allergy symptoms including:

  • Hives, which appear randomly and which last for weeks, sometimes months on end.  One of my triggers for those is stress, but it’s almost impossible to know what else sets them off.   I also get random red marks, rashes and skin blisters on top of my ever-present dermographism.

    Hives caused by emotional stress

    Hives caused by emotional stress.

  • Migraines.  One of my biggest triggers are my hormones, so it will be interesting to see what happens after menopause as they are currently less frequent than they used to be.
  • Flushing.  Much better since going on a low histamine diet, but tiredness, emotions (good or bad) and over-doing it all cause me to go beetroot red.  Here is me last week driving home in the car, way over-tired and with my brain function deteriorating by the second:
    Flushing car
  • Sneezing.  I’m mildly allergic to my dog which I’m sure doesn’t help the situation but doesn’t account for the periods of acute sneezing which seem to randomly come and go.
  • Itchy skin and scalp.  I itch all the time, which could be down to just about anything.  If it were my washing detergent it wouldn’t affect my scalp, just in case anyone was thinking that.
  • Nausea and colicky stomach pain.  I have periods of both and can’t tie this in to any particular food.
  • Constant peeing.  I know when I’m in a ‘good’ spell MCAS-wise because I don’t widdle every hour on the hour.  I’m currently in a ‘bad’ spell and was up 3 times in the night to pee.

I have all manner of other issues like profound fatigue, brain fog, pain, muscle spasms, constipation, insomnia etc. which could be MCAS related but could also be hEDS, dysautonomia, M.E. or menopause-related – it’s impossible to separate symptoms when you have a multitude of illnesses.

MCAS knocks what most physicians are taught about anaphylaxis on the head.  In addition, one of my readers brought up an important issue – that of anaphylactic reactions v anaphylactoid reactions.  Anaphylactic reactions are caused by an IgE mediated event, a peanut allergy being a prime example.  Anaphylactoid reactions are caused by non-IgE medicated events, and MCAS would come under that umbrella.  Whether your allergy is IgE, or non IgE, mediated is however mostly irrelevant because both can cause anaphylactic shock.  Despite that, I have discovered that doctors do tend to think that anaphylactoid reactions are less serious than anaphylactic reactions and when they already misunderstand MCAS or, worse, know zero about MCAS and simply think you’re hysterical or anxiety-riddled it can cause no end of problems in accessing appropriate medical care.   The World Allergy Organisation recognized this and in 2018 changed the term ‘anaphylactoid’ to ‘nonimmunologic anaphylaxis’ in an effort to re-enforce the seriousness of non-IgE reactions and their potential to cause life-threatening shock.

A reaction doesn’t have to happen instantly and immediately cause you to become unconscious for it to be very serious indeed and if you have, or have had, any kind of anaphylaxis you need to make sure this is clearly stated in your medical notes.  MCAS can be an escalating illness, I know mine has been, and just because your anaphylaxis has stopped at grade 2 or 3 in the past doesn’t mean it won’t progress to grade 4 or 5 in the future.

 

 

 

Don’t believe the lists!

I’ve been diagnosed with Histamine Intolerance (HIT) and Mast Cell Activation Disorder (MCAD) for over 5 years now and I forget that people newly diagnosed don’t have the same level of information, and skepticism, about the diseases as myself.  So this post is aimed at the newly diagnosed, or those who think they might have problems with histamine.

I’m only going to talk about diet, because that’s how I control my HIT – I don’t take any supplements because my mast cells hate supplements.  MCAD isn’t controllable by diet because mast cells can be triggered by just about anything in the environment, such as hormones, stress etc, but many people with MCAD follow a low histamine diet to reduce their bodies histamine load.

There is loads of information ‘out there’ on histamine in foods and for the most part it is absolute rubbish.  Sorry to be the bearer of bad news, but there is currently no lab which is testing the histamine content of foods.  None.  I urge you to read my Histamine in Foods: the Evidence page which outlines the situation.  Most of the current lists rely on one paper for their information, but it is years old and has been discredited.  Sadly, however, most of the histamine food lists online use this research paper as their source without checking its validity or accuracy.  The histamine content of food is simply chinese whispers – it is not based on fact, no matter which list you look at (including the one listed here on my blog).  Bare in mind that many popular online histamine sites are making money out of their books and online courses – they’re not suddenly going to turn round and say ‘oops, turns out everything I’ve been telling you for the past 5 years is a pile of poo’.  I don’t make a bean out of my blog and am just trying to be objective.

If you’re following a low histamine food list have you checked where the author has gleaned their information from?  I mean, really checked it?  Have you followed the research links (if they’re available) and actually read the research?  How old is it? Has it been replicated by another research group or testing facility?

The problem with the histamine content of foods is that histamine formation and degredation depends on how old the food is and how it’s been stored.  Just because a lab in Norway has found a level of, for example, 5mg/kg of histamine in yoghurt doesn’t mean the yoghurt you’re eating contains that amount because you have no clue how the milk the yoghurt is made from was stored or handled.  This is why the only accurate way to test for histamine in the food we eat is by actually testing the food we eat – which is why I’m so excited by the home testing kit I’m hoping to try next month!

Information on the histamine content of food is changing all the time.  The most recent reseach paper to come out about the histamine content of foods was undertaken by the University of Barcelona and focused on the histamine content of non-fermented plant based foods, including fruits, nuts and legumes.  It’s a really good paper and I urge you to read it.  Hardly any information on the histamine content of plant-based foods is available, and this new research found that the only products of plant origin with significant levels of histamine were eggplant (aubergine), spinach, tomato and avocado – which is good news and makes most plant based foods fairly safe in histamine terms.

Most of the online foods lists say people with MCAD or HIT should avoid citrus fruits, berries etc., yet this new research demonstrates that no fruit is high in histamine.  The food lists say that strawberries, for example, may not be high in histamine themselves but liberate histamine in our bodies.  It’s tosh.  There is no way of testing whether or not any food liberates histamine stored in our mast cells and you need to be questioning the author of any such information on how they’ve reached this conclusion.

The histamine content of wheat products, eg bread and pasta, all showed undetectable amounts of histamine.

The authors state that storage temperatures are the main contributor to histamine formation in plant based foods, so the rule is to eat plant foods within a day or two of buying them and to keep them refrigerated.

The way we cook food can also affect histamine formation.  It appears that boiling vegetables decreases histamine, sometimes quite dramatically, as the histamine transfers to the cooking water.  In a very small study frying, however, increased histamine (though this hasn’t been replicated in other studies as far as I know).

Having said all that, although the only plant based foods which were found to be high in histamine were eggplant (aubergine), spinach, tomato and avocado, some foods were found to contain other biogenic amines such as putrescine and spermidine.  How much these other amines are implicated in HIT is completely unknown, so how much you want to worry about them is up to you.

The conclusion of the research was that: “the exclusion of a high number of plant-origin foods from low histamine diets cannot be accounted for by their histamine content” which is what I’ve been saying for a long time now.  We are cutting out nuts, fruits, wheat and most veg from our diets for absolutely no good reason!  The authors do conclude that some of these foods contain putrescine and if you have an issue with them it might be because of that, but the foods aren’t high in histamine and if anyone tells you they are they’re fibbing.

 

Misbehaving Mast Cells

I woke up at the weekend with huge hives on my butt.  I’d been expecting them.  Stress is one of my biggest mast cell mediator triggers and I’ve been under a shed load of stress in recent weeks (the reason why stress causes mast cells to degranulate is briefly covered in my Canary Post).

I received my MCAD diagnosis four years ago now and I’ve come to recognize most of my mast cell triggers.  Some, like pollen release in Spring, I can do nothing about although I take precautions to minimize the effects like wearing sunglasses outdoors and not leaving all my windows wide open, while others like high histamine foods I can more successfully avoid.  Acute stress, like my Mother being suddenly unwell, is something we all have to deal with at some time or another and something we just have to manage as best we can.  While my Mum was hospital this included days where I stayed at home and rested instead of visiting her (the guilt was awful, especially as it meant my poor Dad, who was also exhausted and stressed, had to visit twice in one day), making sure I still ate well (tricky as I can’t just buy a sandwich or meal out, so had to be super organized to always take home-made food with me) and finding ways to chill out despite the chaos (I find listening to talking books relaxing and non-taxing and was something I could do on my long drives to and from the hospital).

There are two types of mast cell activation: acute and chronic.  Acute mediator release is severe and blatantly obvious and thankfully only happens for me when I take certain most drugs.  Chronic mediator release can be much more tricky to detect and it took me a while to know the signs that my mast cells were misbehaving.  Symptoms will be different for all of us, but my tell-tale signs of chronic mediator release are:

  • Insomnia.  I’m exhausted and go to sleep fine, then wake up several times in the night and struggle to get back to sleep.  This is usually accompanied by parasomnias, in my case nightmares, sleep walking and sleep writing.
  • Needing to pee more, particularly during the night.  When my mast cells are calm I never need to get up in the night for a wee, but when they are releasing I get up between 2 and 6 times.
  • Feeling either unnaturally exhausted like I’ve been drugged, or unnaturally hyper.  I prefer the hyper cos I get all sorts of jobs done with energy I don’t usually have 😉
  • Sluggish bowel.  I usually go for a poop every day after breakfast (I know, TMI 😉 ) but when my mast cells are playing up my bowel stops working.  This is the opposite to most people’s experience of diarrhea.
  • Having a bunged up nose.
  • Sneezing for no reason.  And I really mean sneezing, which can go on and on……and on.
  • Back pain, which feels muscular in nature.  One of the biggest surprises of starting a low histamine diet was a reduction in the back pain I’d had since childhood which, when my mast cells are releasing, comes back.
  • Increased joint pain, which again for me feels muscular.  When my mast cells release, the mediators definitely make my collagen more stretchy/weak which makes the ligaments which holds my joints in place painful.
  • Itchy skin and scalp, without a rash.
  • Nausea.
  • Muscle cramps, particularly stomach.
  • Retching/oesophageal spasms, but not vomiting.
  • Increased reflux.
  • Increased cough and chest tightness, which may be due to the increased stomach acid mentioned above, or may not (I don’t have asthma).
  • Itching on the outside of my ears, which sounds trivial but drives me bonkers.
  • And eventually hives on my butt, which are always the last symptom to appear.

The biggest tells for me are the insomnia, peeing during the night and sluggish bowel which are sure signs my mast cells are having a hissy fit.  I can usually identify a reason and do something to change the situation, though there are times they misbehave for no apparent reason which is scary as I then have no way of controlling them.

Triggers will again be different for all of us, but my obvious ones are:

  • Drugs, which as far as my mast cells are concerned are The Devil.
  • Stress.
  • Doing too much.
  • High histamine foods.
  • Menstrual and menopause hormones.
  • Seasons – Autumn being particularly bad (which isn’t mould related because we have mould all year round here) and a warm, sunny Spring usually being particularly good despite the fact I’m allergic to spring pollens (work that one out!).
  • The metal Nickel, which gives me eczema.

I’m sure I probably have other triggers that I haven’t identified, but they can’t be that vital if they’re not causing me easily recognizable issues.  I definitely have a problem with being too hot or cold, and having a hot bath or shower brings me out in an itchy rash but I love my baths and they help my joint and muscular pain, so much so that I’m willing to put up with some transient itching which usually only lasts twenty minutes or so.  Being too cold, on the other hand, makes me feel fluey and unwell and gives me horrendous brain fog which can last until the next day.

Due to my very severe drug allergies I, for the most part, don’t have the option of managing my mast cell disease with medication.  My management strategy therefore consists of:

  • Removing or reducing the trigger, which is sometimes do-able and sometimes not.
  • A wide, balanced, but low histamine, diet which is organic/chemical free whenever possible.  This has been my literal life saver.
  • Taking H2 antihistamines for stomach acid – I’m currently not reacting to Famotidine though this may change in the future.  I have actual panic attacks worrying about becoming allergic to my H2 meds because I have such severe GERD that without them the pain makes me suicidal.
  • Taking small amounts of H1 antihistamine in Spring for hayfever symptoms – I have issues with H1s, sometimes reacting to them and sometimes not, so I avoid unless absolutely necessary.
  • Trying to get enough rest and not over-do it.
  • Trying to do some gentle walking every day, which due to my EDS and M.E. isn’t always possible but is beneficial on many levels when I can manage it.

I look on with envy at people who can tolerate Sodium Chromoglycate, supplements, Benedryl and all the other popular mast cell treatments.  Trust my mast cells to have a particular dislike for the very things which would ultimately lead to their demise – they’re wiley buggers I’ll give them that.

Recognizing my mast cell triggers has given me a feeling that I’m more in control of the situation, though whether this is actually true or not is open for debate 😉  The one thing I’ve discovered about mast cell disease is that it’s an ever changing entity and the whole shebang can alter literally overnight.  So, like any other aspect of life, I just take it one day at a time and am just thankful when I wake up and today is a good day 🙂

 

Book Review

‘Never Bet Against Occam’: Mast Cell Activation Disease & The Modern Epidemics Of Chronic Illness and Medical Complexity by Lawrence B. Afrin, M.D.

In March 2016 the first ever medical book on Mast Cell Activation Disease was published by world leading American mast cell expert and hematologist/oncologist Dr Afrin.  It’s a weighty tome, over A5 in size and 400+ pages long though the actual book only takes up the first 200 pages, with the latter half devoted to an extensive medical dictionary.

Although it’s supposedly aimed at patients, with witty titles like ‘Well, we’re in a world of s**t now: gastrointestinal findings in MCAS’ you will struggle to read this book without a good education, basic knowledge of medical jargon and a grounding in mast cell disease.  It is not for the faint hearted or the severely brain fogged!  Having said all that I had some light-bulb moments which I’ll outline below and it was incredibly reassuring to read about my disease from someone who truly gets it.

The book covers every aspect of MCAS, from rashes to thinning hair, lung problems to bladder pain, hormones to blood findings and everything inbetween.  There is an extensive chapter on diagnosis & gene testing, and an even larger chapter on treatment.  Of course, none of the diagnostic tests are available in the UK and neither are many of the treatment options which is frustrating as all hell and the reason I don’t frequent any MCAD forums or groups – hearing about all the testing and treatments American patients receive is just depressing and makes me very despondent.

The book is way too large to cover in detail, but I thought I’d share some of the sections which particularly stood out for me:

  • “Hair (especially on the scalp) often becomes brittle and dry and patients often go through cycles of increased hair thinning and loss”.  See this post regarding my own alopecia.
  • “The nails become brittle and weak and don’t grow normally.  They often acquire longitudinal ridges…..”   See this post, which explains my nail growth problems and weird longitudonal ridges which maybe aren’t so weird after all!
  • “MCAS patients also often cause their dentists fits because of how much dental and peridontal deterioration occurs, even when the patient has always been good about attending to dental hygiene.”  I’m going to print this bit off for my Dentist as he constantly tells me I’m brushing my teeth too hard which is why my gums are receding early, and I keep telling him I do not!
  • “….one of the end effects of mast cell disease’s impact on the immune system is impaired healing”.  Coupled with the delayed healing of Ehlers-Danlos it’s a wonder my wounds knit together at all!
  • “….Fibromyalgia is a diagnosis that MCAS patients have frequently acquired at some point along their diagnostic paths……….random skin biopsies in fibromyalgia patients have been found to harbor roughly ten-fold more mast cells than random skin biopsies from healthy people.  This of course doesn’t come anywhere close to proving that fibromyalgia is a variant of MCAS but it’s nevertheless an interesting observation.”
  • On the subject of diagnosis: “Are there ‘odd’, ‘strange’, ‘weird’, bizarre’, ‘unusual’, ‘mysterious’ symptoms and findings? (….many patients with unrecognized MCAS have long had chart entries incorporating exactly these words).”  When I was having seizure-like episodes and “bizarre” (what I now know to be anaphylactic!) reactions to all drugs my GP told me not to tell any other doctor as they’d think I was mental 😦  So I kept my symptoms quiet for nearly a decade, putting my life at risk in the process.

The book contains a few pages on H-EDS.  Dr Afrin states “here’s the really weird thing about type III EDS: it’s actually not a genetic disease – at least, not as far as decades of research into connective tissue genes and proteins have been able to discover………..it might be the case that, for at least some EDS Type III patients, the problem lies not in the normal assembly of allegedly mutated connective tissue proteins into connective tissue that functions abnormally but rather lies – due to aberrant mast cell mediator release – in the abnormal assembly of entirely normal connective tissue proteins into connective tissue that functions abnormally?  I’m going to really stretch the bounds of how far one should anologize by saying this, but I’ll say it anyway: could EDS type III be a ‘connective tissue autism’ in which normal connective tissue proteins are connected in abnormal ways vaguely akin to how in autism normal brain cells are connected in abnormal ways (possibly, in some patients, as a consequence of abnormal mast cell mediator release)?”.

I admit I found  his opinion on H-EDS difficult to read.  I, and many other people, fought a very long (in my case 40 year), frustrating and difficult journey to have our connective tissue disorder recognised and to have the diagnosis questioned is tough.  There is also the pedantic point that there is now no such thing as “type III EDS” it is called EDS-hypermobile type and for another if it’s not genetic how come I inherited mine from my Mum?  He may turn out to be right that H-EDS is a form of Mast Cell Disease rather than a genetic mutation of connective tissue but I know many H-EDS+MCAD sufferers who are having their MCAD treated with little, or no, effect on their EDS which has to raise questions.  Of course, I’ve also heard from supposed H-EDS sufferers who say that treating their MCAD “cured” their hypermobility – my answer to which is that they were possibly misdiagnosed and didn’t have H-EDS to start with (H-EDS is so much more than simply being hypermobile).  The truth is no-one currently knows the origin of H-EDS, though the inheritance factor is undisputed.

In contrast to the section on H-EDs, I found the chapter on genes mirrored my own thoughts on the subject to a T.  “We’ve been hearing for several years now that the era of genomically personalized medicine is almost upon us, a time when…….we will be able to determine anybody’s complete genetic code which – and here’s where we wave our hands in a magic gesture – will tell us all that’s wrong with us now and all that’s likely to go wrong with us.  Yeah, right.  If only……..  A dollop of your saliva….produces pages and pages and pages (of information)…..you have Mutation code A, which puts your risk for Disease B at Level C….and so on…..You forward this information to your doctor……and he says ‘there’s a lot of stuff here, and the truth is, we really don’t yet know what 99.99% of this stuff truly means and there’s nothing to be done about it at this point anyway’.  And he’s exactly right.”

Amen to that.  There are people on forums on the internet who seem to spend every waking moment of their lives analysing their genetic data.  They’re obsessed.  And for what, exactly?  Having a specific gene mutation does not mean a damn thing and certainly doesn’t determine your risk of developing a particular disease, just like not having a gene mutation doesn’t mean you have a clean bill of health.  My 23andme results said I didn’t flush (wrong), have a tremor (wrong), have migraines (wrong) or have Dupytrens Contracture (which may or may not be wrong, my Mum developed hers in her 60s and her sister and brother in their late fifties, so I’m not yet old enough to know if I’ll develop it too).  No gene has been associated with migraine disorder in any even, so how on earth the company can say you do not have mutations linked to migraine is utter bollocks.  However, there are exceptions to the rule, for example the BRCA gene which increases the likelyhood of female related cancers exponentially.  In mine, and Dr Afrin’s opinion, gene testing is going to become incredibly important to health care in the future, but we’re just not there yet.

Having said all that, there is some interesting information on KIT, thought to be the most important genetic controller of mast cell activity, in Dr Afrin’s book that’s well worth a read.

If you have a good general understanding of medicine, and mast cell disease in particular, I can highly recommend this book.  If you don’t, you may struggle.  Available in hardback from both UK and USA Amazon: UK cost approx £13.

 

Dermographism

Also known as Dermatographic urticaria, Dermatographism, Dermographia or Dermatographia and commonly called “skin writing”.

I’ve had Dermographism for as long as I can remember.  So I was either born with it (most likely) or developed it in infancy.  I had absolutely no idea that other people didn’t have it until I was 45 years old because it had always been normal for me.  How crazy is that?

According to Wikipedia: Dermographism is “thought to be caused by mast cells in the surface of the skin releasing histamines without the presence of antigens, due to the presence of a weak membrane surrounding the mast cells. The histamines released cause the skin to swell in the affected areas.  This weak membrane easily and rapidly breaks down under physical pressure causing an allergic-like reaction, in general a red weal (welt) to appear on the skin. It can often be confused with an allergic reaction to the object causing the scratch, when in fact it is the act of being scratched that causes a weal to appear. These weals are a subset of urticaria (hives) that appear within minutes, in some cases accompanied by itching. The first outbreak of urticaria can lead to others on body parts not directly stimulated, scraped, or scratched. In a normal case, the swelling will decrease with no treatment within 15–30 minutes, but, in extreme cases, itchy red welts may last anywhere from a few hours to days.”

I couldn’t have put it better myself 😉

I develop dermographism when I’m scratched, or sometimes when my skin is subjected to pressure.  I cope with pressure better than scratching and can wear elasticated clothing and socks without problems, so long as they’re not too tight.  My biggest issue in respect of pressure are the braces I use for my joints.  They have to be tight in order to support the joint but on the whole they’re simply too tight for my mast cells and cause welts to develop.  The welts itch me like a son-of-a-bitch and of course if I scratch the scratch itself becomes a welt.  Joint braces = histamine hell.

Scratches on my skin cause my dermographism to go bonkers but, unlike the welts caused by pressure, these welts don’t itch.  It’s bizarre.  I thought I’d demonstrate my dermographism by scratching the word “hi” on my arm with the end of a pen.  Here’s the instantaneous result:

Photo of Dermographism on the armI’ve never timed how long it took for the hives to go down, so as an experiment here’s the dermographism after 2 hours:

Photo of dermographism on the armAnd again after 4 hours:

Photo of dermographism on the armAfter 7 hours the swelling had gone but the red mark of the word “hi” was still there when I went to bed that night (though had gone by the next morning).  As I said though, no itching and luckily the hives are always contained to the area of the scratch and don’t seem to set off any kind of histamine chain-reaction elsewhere, yayyy!

My dermographism isn’t confined to pressure and scratching though.  When I had a 24 hour heart monitor done in 2014 I had to wear pads stuck on my skin with electrodes attached to them.  My skin can be iffy when it comes to glue (some plasters and tapes make me itch like mad) and this was the reaction to one of the pads on my chest:

Photo of dermographismThe itching nearly drove me to distraction and, not only was there an oval shaped hive from the pad, but weird criss-cross hives all the way round it too – no clue what they were, but oh boy was I glad to get those damned things off me!

I don’t take any kind of medication for my dermographism.  I scrape my skin 10 times a day (being thin-skinned due to EDS) but luckily the scratches don’t itch so I feel no need to treat them with anything.  It would be great to be able to wear proper joint braces but, as I’m allergic to anti-histamines, taking daily medication to counter-act the pressure hives isn’t really an option.  So I just don’t wear anything tight – problem solved 🙂

I wish I’d known a very, very long time ago that dermographism is an indicator of Mast Cell Disease.  Mine is classed as fairly severe and unusual that it presented from early child-hood.  Obviously as MCAD is now linked to Ehlers-Danlos Syndrome and EDS is present from birth I personally feel my MCAD has also been present from birth and simply worsened in middle age as did my EDS – it’s no coincidence that my MCAD exploded less than 2 years after my EDS exploded.  Other people, however, acquire dermographism in later life and of course not all people with dermographism have EDS.

I wish I’d known as a kid that my skin wasn’t like everyone else’s.  I could have added Skin Etch-a-sketch to my list of party tricks and I’m sure when I was 9 that would have been super cool.  Not so cool though to have thong induced hives up the crack in my arse.  Who the hell invented thongs anyway – they’re like dental floss for your butt! 😉

I’m still baffled

This week I had yet another delightful comment on my Recipe page basically saying that my site was a joke.  How on earth can I call my recipes low histamine when they contain mushrooms, chillis and lemon juice?! (with an excalamation mark just to shove the point home).  I was not amused, particularly as the writer had obviously not afforded me the courtesy of actually reading my blog.  The Read This First! page in the Low Histamine Food section, and the links contained therein, explain the information my food choices are based on and if you can’t be arsed to read it before mouthing off you’re just being  rude.

I’ve also had a, thankfully much nicer and more polite, comment from SIGHI (the Swiss Interest Group on Histamine Intolerance) informing me that their cookbook has now been translated into English.  I had a look through the excerpt on their website and it’s obviously taken a lot of hard work and is very professional – I’ll add the details to the Links & Resources page when I get the chance.

If you look at the start of the cookbook it lists allowed and excluded foods, some of which differ from those on other low histamine food lists, the list I follow included.  The whole histamine in food thing still baffles me and I know baffles most of you all too.  Here’s the rub: I can find hardly any research on the histamine content of foods, the exception being fish where scombroid poisoning is well documented.

The list I follow was written by Dr Joneja, a world leading researcher on histamine intolerance, so at least has some validity.  The person who told me this week that my site was laughable because I included mushrooms so far hasn’t produced any research to back up their claim that fungi are high in histamine. Barcelona-based nutritionist Adriana Duelo, whose work is regularly submitted to the prestigious Spanish Society of DAO Deficiency  (of which she is also a member) , has tested mushrooms however and found they contain zero to 1.8mg/kg of histamine which is about the same as fruit juice and less than swiss chard or rice.  Having said all that, some people can’t tolerate mushrooms just like I can’t tolerate apples, which are also very low in histamine.

And therein lies another rub: we don’t all have the same immune system malfunctions.  There are people with allergies.  There are people with intolerances, eg to tyramines, salicylates, oxalates, nightshades, gluten, lactose.  There are people with low or inhibited DAO &/or HNMT.  There are people with mast cell disease.  And there are people with immune system problems which don’t fit any of the aforementioned categories.  And although histamine is implicated in all of these illnesses the mechanisms by which it causes symptoms, and the treatment needed, will differ widely.  It is also, in some cases, only a small part of an overall immune system picture.  In MCAD, for example, when mast cells degranulate they produce around 30 mediators – why do we only focus on histamine?  And why do we mainly focus on food, when just about anything can cause mast cell degranulation in MCAD, including the weather, emotions, lack of sleep, hormones, etc. etc.?

To complicate matters further, many people mix low histamine food lists with other issues.  SIGHI exclude wheat on their diet for example, when there is no evidence that wheat is high in histamine.  Wheat may, or may not, be inflammatory and excluded on an anti-inflammatory diet or people may be intolerant to gluten but that still doesn’t make it a histamine rich food.

I’m hoping to have time over the holidays to update my website a bit, including writing a new page tackling these very complex issues.  To be honest though, the more I’ve learned over the last 3 years the more I suspect any low histamine food list.  Who exactly has tested cinnamon, curry powder or nutmeg for its histamine content?  And how on earth is it even possible to test whether a particular food liberates histamine once it’s been ingested?   Are fresh foods always lower in histamine than dried?  Dried oregano, for instance, is miles higher in mast-cell stabilizing luteolin than fresh oregano.  If pumpkin is high in histamine what about related vegetables like squash, or other root vegetables like carrots or turnip?

I can see the logic, if not the research, to back up claims that aged and fermented foods will be high in histamine, eg. aged cheeses, cured meats and dried fruits but where is the science that food colorings are high in histamine (not that I’d ever want to eat artificially coloured food but where is the histamine connection)?

I’m almost certain I inadvertently still eat things which are high in histamine.  I’m also equally as certain that I’m avoiding some gorgeous foods for absolutely no good reason.  And on top of all that I know for sure that histamine in food is only a tiny part of my very complex health issues and I’d love more research on all the other aspects of mast cell mediator release.

I’m just sharing rambling thoughts in this post really and, as I said, will try and put together a more considered and informative page in the near future.