Flares

Having been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Syndrome (MCAS) it’s often hard to know when I have a symptom flare who the culprit is.  Acute reactions are easy – if I take a drug and 20 minutes later get a whoosh in my head, my heart starts hammering and my face goes beetroot red my mast cells are having a hissy fit, and if the same thing happens 5 minutes after I’ve eaten I know it’s my HIT at play, but the waters become muddier when I feel insidiously and chronically unwell as is the case at the moment.

I’ve talked about this before, but for the benefit of people new to my blog these are the signs that my histamine levels are high:

• Feeling exhausted but wired and unable to relax.
• Insomnia, either difficulty getting off to sleep or waking during the night – usually around 2 or 3am.
• Increased urination, especially having to get up during the night to pee.
• Sluggish bowel.  I usually poop every morning after breakfast but this becomes every other day and at random times, even during the  night.
• Flushing and feeling hot after eating.
• Ligaments which injure super easily and refuse to heal.
• Back pain which is muscular in nature.
• Muscle spasms, particularly in the gut.
• Nausea without vomiting.
• Itchy skin and scalp.
• Sore throat.
• Oesophageal spasms which cause retching.
• Sneezing, particularly on waking.
• Increased or decreased energy.
• Increased or decreased appetite.
• And my old friend hives.

I am currently having one such flare of symptoms and looking back over the past couple of months I suppose I can see why.

• My cleaner has been off so I’ve been doing way more in the house than normal.
• My dog walker was also off for 2 weeks so I’ve had to take Bertie out more.
• I split my lip open and had stitches.  There’s the shock of the event, the pain, the physical trauma and the fact my poorly immune system had to rally into action.
• I subluxed my thumb joint which has led to ligament trauma, inflammation and ongoing pain.
• I have a throat infection.
• I had to have an emergency dental visit yesterday due to acute inflammation of one of my wisdom teeth.
• And of course all the usual peri-menopause and endometriosis related gubbins.

It’s no surprise I’m not feeling great.

It all starts a vicious cycle though.  I am way too exhausted to cook, and feel nauseous much of the time, so end up eating a less than low histamine and less than ideal diet.  Add to this raging hormones and ridiculous food cravings and I know my ingested histamine is high.

Wounds and trauma stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells…………  In a healthy person this cycle would happen once and then stop, whereas in MCAS patients the hand-brake appears to be faulty and we just keep rolling down the hill.

Having to do more physical activity than I know is good for me has made me really tired, but due to my high histamine levels I have insomnia and am getting up in the night to pee often several times.  This makes me even more exhausted and I gradually get more and more run down and open to opportunistic viruses and infections.

It’s incredibly hard to break the cycle.  I know I should probably have some enforced bed rest, but when your histamine levels are high and you feel really wired it’s soooo hard to just lie there doing nothing!  But it does usually help, so now my cleaner is (hopefully) back and my dog walker has returned from her hols I will have to force myself to chill, use my super powers to resist my hormone-related food cravings and give my immune system a chance to switch off.

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Mast Cell Triggers

MCAS is a very individual disease.  We will all react to different things and to differing degrees  but it’s still comforting to read about other people’s experience of mast cell disease and to know we’re not alone.

My reactions take on several forms:

• Cutaneous: flushing, itching, hives, blisters, rashes.
• Brain: migraines, brain fog, seizures, memory problems, altered consciousness, speech problems.
• Gut: nausea, retching, oesophageal spasms, increased urination, constipation, diarrhea, gut pain and cramping.
• Ocular-nasal: sneezing, stuffiness, runny nose, nasal and eye itching, eye redness & watering, eye pain and soreness, light sensitivity.
• Cardio-vascular: palpitations, chest pain, breathing problems, blood pressure rises and falls, vertigo, dysautonomia.
• Systemic: fatigue, weakness, widespread non-specific pain, feeling fluey, muscle spasms, pins & needles, fight/flight, pacing, anxiety, feelings of doom, insomnia.

I can either suffer from the symptoms of one these categories on their own (eg. birch pollen season gives me hayfever but little else), or in combination with other categories, for example drug reactions give me just about every mast cell symptom known to man. My reactions have also changed significantly over my life-time.  As a child I had flushing, bowel problems and fatigue but nothing so out of the ordinary that it wasn’t just put down to being normal!  As a teenager, once my hormones had kicked in, I added chronic headaches, aura migraines, skin itching and one drug reaction to the mix.  By the time I was in my mid-thirties I also had widespread pain, increased urination, oesophageal spasms, severe M.E., severe insomnia, chronic nausea and several drug reactions.  And then when I hit my early forties I became almost totally drug allergic, developed food reactions, Histamine Intolerance, hives, hayfever, my hEDS went bonkers and I peed so much I honestly thought my kidneys would pack up!

Here is a list of the things which currently cause my mast cells to behave badly:-

1. Emotions

Emotions are one of my biggest triggers, but the reaction is mild.  Being excited brings on a flush, makes my skin itchy and sometimes brings me out in a rash.  Being unhappy,   particularly if I’ve been crying, does the same but also makes me feel fluey and wiped out afterwards.  Arguments are to be avoided at all costs as they always involve not only flushing but also rashes and/or hives and make me hugely brain fogged and exhausted.  This is the rash which appeared on my tummy after someone was bitchy to me on a Schnauzer Forum!

Chronic stress, however, is a different kettle of fish.  Eventually I will break out in hives, start reacting to foods, develop insomnia, have to get up in the night to pee (sometimes several times), my already poor memory goes to hell on a hand-cart and eventually I will end up bedridden, fluey and exhausted.  This is why I need a quiet, structured life with as few surprises as possible.

2. Drugs

I am one of the most drug allergic people I know.  From herbs to supplements, painkillers to steroids, anti-histamines to anti-depressants, sedatives to anti-emetics my mast cells reject them all.  I have an ocular-gyric crisis to anti-nausea drugs like Stematil, and Grade III anaphylaxis to most of the others (there is currently no universal grading system for anaphylactic reactions but one of the most common is the Ring & Messmer scale which you can see on the Mast Attack site).  Here is my facial flushing after a drug reaction:

Unfortunately the reaction doesn’t stop when the drug is out of my system.  Mast cell activation can perpetuate mast cell activation and for me the whole thing goes round and round in circles until something eventually breaks the cycle.  My longest reaction has been 3 weeks until my heart was so poorly from the constant palpitations I was blue lighted to hospital with a suspected heart attack.

My drug reactions can also make me ill for months afterwards and so weak I’m bedridden.  Needless to say I don’t take any drugs, herbs or supplements unless I am so desperate that being potentially bedridden for the next six months is worth it!

3. Hormones

Entering peri-menopause is what triggered my MCAS to go from mild to life-threateningly severe.  I’m convinced I was born with MCAS just like I was born with hEDS, but apart from my increasing drug reactions and almost daily flushing it didn’t become really serious until I was 44 and my hormones started to fluctuate.  I started reacting to foods, which I’d never done before, developed hay fever, hives, started peeing during the night and my migraines went off the charts.  I also stopped tolerating any medication, even things I’d taken for years without a problem.

I’m unfortunately still having regular periods and in the week leading up to The Curse I can have hives, itchy skin, rashes, nausea, widespread muscle pain, am clumsy and my chronic fatigue ratches up a notch or ten.

4. Seasons, plants & animals

I had no idea until I had skin prick allergy testing that I was allergic to Birch pollen and as a result of that also have problems with apples which make my throat and lips tingly and itchy.

I also get an itchy skin rash from fir trees which I discovered when I moved into a house that had several of them in the garden.  Needless to say I chopped them all down and now have an artificial Xmas tree!

I had a strong reaction to dogs on skin prick testing but I’ve never noticed any problems being around them – no itching, eye problems, sneezing or anything else, which is brilliant considering I have Bertie!  My brother, OTOH, only has to be in the same room as a dog for two minutes and is sneezing his head off and his eyes are streaming.  He’s also allergic to horses but not to cats!

5. Insect bites

I did a self portrait photo in a lovely wildflower meadow last week and stupidly forgot to put on insect repellant beforehand.  I didn’t realize until I got home and started to itch like a son-of-a-bitch that I’d been eaten alive by tiddly little flying critters and four days on am still having to use steroid cream for the itching, swelling and redness.  I have an exaggerated reaction to insect bites, from mosquitoes to gnats, and have ended up in A&E before now just from being nipped by a midgy.  The itching is out of all proportion to the size of the bite wound and drives me absolutely bonkers – here is one of last week’s little nibbles on my thigh:6. Hot water

I know, it sounds nuts to be allergic to hot water but sadly I am!  I luuurve my baths as they’re one of the few things which help my pain levels, but they do make me itch, itch, itch and I’m zonked afterwards.

I am not, however, allergic to heat per se.  I love warm (but not hot!) sunny weather and usually feel my best when the weather is nice!

7. Viruses, Vaccinations and Trauma

Splitting my lip open and having it stitched the other week made me feel rotten for several days as did having a molar removed a couple of years ago.  Wounds and trauma, which necessitate an immune response, naturally plays havoc with my mast cells though usually any reaction is short lived and just involves increased brain fog, nausea, muscle weakness, fatigue and generally feeling a bit fluey and not well.

Viruses and bugs are much more serious and can leave me bedridden for weeks or even months.  The weird part is, though, that just before I come down with a virus I feel absolutely brilliant.  For 24-48 hours 80% of my symptoms disappear and I feel fabulous……….and then the virus hits and I am floored.   I can have a variety of reactions to viruses, from simply feeling a bit MEish, fluey and unwell to full on grade III anaphylaxis the after-effects of which can last for months.

Vaccinations, however, are the worst of all.  The last jab I had was for travel abroad and it was that which led to me becoming severely affected with M.E. and being bedridden for a decade.  One of the immunizations was against meningitis and 5 days later I got meningitis!  I also had a measles vaccine as a child and still went on to get measles, though admittedly not as severely as if I’d not had the vaccination.  My immune system just doesn’t respond in a normal way to jabs and I will never, ever have another vaccination as long as I live.

8. High histamine foods

While it’s unclear whether my food reactions are as a sole result of my Histamine Intolerance, or whether mast cell activation is also at play, I started reacting to high histamine foods when I was 44 having never had a food reaction before in my life.  Within about 20 minutes of eating I’d develop palpitations, my blood pressure would plummet, I’d flush, have oesophageal spasms, retch, pee and pass out – not necessarily in that order.  It was terrifying and I became almost phobic to eat anything as I had no idea at the time what was happening.  It took nearly a year to discover I had HIT and needed to follow a low histamine diet, which thank God has kept my food reactions at bay.  However, during times of mast cell activation my food histamine bucket over-flows much more quickly and I can have more food reactions that I would when my mast cells are calmer.  It’s a constant balancing act, especially while I’m menopausal and my mast cells are all over the shop.

9. Alcohol

Although some alcoholic drinks are high in histamine so are a no-no due to my HIT, some are not but I react to them anyway in the same way I react to high histamine foods and some drugs.

10. Doing too much

The busier I am, and in particular the less rest I get, the more reactive I become.  I’ve no idea why this should be and it kind’ve sneaks up on me, so I have to be mindful when I’m busy that I can’t keep that level of activity up forever without consequences.  Not only does lack of routine, doing too much and not enough rest make my ME worse it also makes my MCAS worse and after only a few weeks I’ll have a hive outbreak, stop sleeping, stop pooping and start peeing like a racehorse.  In fact  I’m doing just that at the moment, probably as a result of my recent mouth injury, rampant hormones, eating crap (I actually had a frozen pizza last week for the first time in 5 years, just because I wanted one god dammit!) and trying to socialize more than I should due to my current feelings of isolation.  My histamine is definitely way up and I really should take more notice of that, rest more and stop eating rubbish.

 

That’s the bad news, but there is good news too, albeit on a small scale.  Since starting a low histamine diet my migraines are less than they were and my almost daily headaches have disappeared completely.   My horrendous, intractable, untreatable insomnia has improved dramatically after not sleeping for over twenty years and I rarely now have to get up in the night for a wee.  I used to react really badly to smells and fumes, like bleach and hairspray, but for some reason these no longer bother me and despite my exaggerated reaction to insect bites I’ve been stung by a wasp and had no reaction whatsoever.  So it’s not always the case that MCAS will continue to progress and there is at least scope for small improvements.

I’ve no idea what will happen once I’m through the other side Menopause.  If my hormones are the cause of much of my mast cell madness I’m hopeful of at least some improvement once they’ve finally jogged on which, as you all know, can’t come soon enough.  Time will tell.

 

Toolkit for GPs

This is just a quick post to say that an excellent, comprehensive and easy to understand toolkit on Ehlers-Danlos Syndrome aimed at primary care/GPs is available on the British Royal College of Physicians website.   Not only does it cover hEDS in detail it also has excellent information on MCAS and POTS in the ‘Emerging Major Associations’ section – hurrrrah!  Maybe now we might start to find Doctors in the UK who have at least heard of these three disorders and the more people who are diagnosed the less “rare” they will all become.  Because we know they’re not rare don’t we?!

It’s been interesting reading through all the info and I’m definitely sending the website link to the Eye Consultant I saw at the hospital this week and my GP just in case she hasn’t got the memo.

 

 

Weekly roundup

I was delighted with how well my brain in particular coped with my Photography day away last Sunday.  I had to be up, dressed and breakfasted by 7am (which anyone with M.E. will know is a killer), take the dog out then carry on into town to drop him off at my parents’ before being picked up at 8.15am.  I can get travel sick going ten minutes up the road so was dreading the seventy minute car journey but thankfully all was fine and I had a really clear head all day, yay 🙂  That’s the good news.  The bad news is my  back screamed the entire time and having to sit upright  for hours on plastic chairs with my feet on the floor (hard work on a good day) meant that by 11am I was in so much pain I actually felt both sick and faint.  In the end I gave up all self respect, took my shoes off, put my feet up on the chair and sat squirming in every conceivable position which must have driven the people sitting behind me bonkers.  I loved looking at all the wonderful pictures but my back is still hurting a week on.

Weds my Mum was at the hospital for cataract surgery.  My Dad took her and while her surgery went to plan my poor Dad had one of his severe dizzy spells while she was in theatre.  The GP had told him to request help, so bless him he told the receptionist who directed him to A&E.  They were great, did a heart trace and bloods but the results didn’t show anything untoward.  Just before it happened his leg had simply collapsed beneath him and he would have fallen if he hadn’t been next to a set of wheelie bins.  He has mild spinal stenosis, has had leg weakness for a year now and has been frightened they would just give way on him, but the spinal Consultant told us back in February that wouldn’t happen so now I’m not sure what’s going on.  The GP had told me to keep her informed of his dizziness, so I wrote her a letter telling her what had happened.  My Dad has also recently been found to have an IgA kappa paraprotein band in his blood work which can be a sign of melanoma or just be labelled as having “unknown significance” (a condition called MGUS).  Without any further tests my Dad has been diagnosed with MGUS, however leg and back pain, fatigue and kidney problems can be a sign of melanoma and he has all three.  So I included that in my letter to his GP who bless her is lovely and new to the practice after my Dad’s own GP left suddenly last month to care for his sick wife.  I then received a phone call from the practice to say the GP wants to speak to me this week about the contents of my letter, so we’ll see what she has to say.  I’m just conscious from my own experience that each Consultant only sees his or her part of the puzzle and often no-one looks at the bigger picture.

While out walking Bertie on Thursday I found a bird’s wing which I brought home thinking it might come in handy for a photograph.  I decided to try something a bit different and minimalist and this photo is what I came up with.  I don’t know if you can see from this small image but I’ve superimposed an owl’s face onto the feather.

Friday night was our annual awards dinner for my Camera Club when we have our trophy presentations.  I only go out socially in the evening about 3 times a year so I was really looking forward to it and spending time with my lovely friends who I don’t really get much chance to chat to at busy Club nights.  However, I arrived to find that the lady who had organized the event had this year taken it upon herself to do a seating plan and I wasn’t sitting with any of my friends.  Instead I was on a table consisting of mainly quiet people I have zero in common with and one I didn’t know from Adam.  I could have cried and my good friend, who is quite reserved and struggles to chat to people she doesn’t know well, felt the same way.  Three other people came up to me and said how unhappy they were about the situation so I went up the organizer and told her it had not been a good decision.  She took the right hump and became very defensive.  At the end of the night I and my friend overheard her slagging me off at the bar to anyone who would listen, which is hugely unprofessional from a member of the Club’s committee.  For a start I hadn’t done anything wrong other than have a different view point to her and for seconds is the remit of a Camera Club to help people with their photography or does it include telling people who they can, and can’t, speak to at social events?  And if you do decide the remit of the Club is to dictate social events the rule should apply to all.  However, married club members were allowed to sit together yet us singletons weren’t allowed to sit with our friends which doesn’t seem fair to me.  Any kind of emotional stress makes me feel really ill and I was in tears with exhaustion and disappointment on the drive home.  I then didn’t get to sleep til 3am due to all the adrenalin and today feel like I’ve been it by an express train.  The fact that she’s going round telling other people I was the only one to make a fuss really pisses me off.  My quieter friends are too intimidated by her to say anything but I’m not, so I spoke for all of us then of course I’m in the firing line and the target of her friend’s wrath who of course will take her side.  To add insult to injury they started the awards part of the evening when I was in the loo having a wee and I missed my trophy presentation 😦

This weekend is the deadline for my appeal to the Financial Ombudsman’s Service about my PHI complaint.  My brain is like mush from stress, pain and lack of sleep but I have to get it done.  I’m going all the way with it and asking for a referral to the actual Ombudsman – I’ve nothing to lose and everything to gain.  Wish me luck!

 

 

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.

 

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.