Tag Archives: food reactions

MCAD v HIT

I’ve noticed that whenever I talk about histamine and food here on my blog there is often confusion about the cause of food reactions, so I thought I’d write down my take on what’s happening.  I’m no expert, though, just a patient along with the rest of you so I could be well off the mark and I’m sure if I am someone will point it out 😉 .

I’ve had MCAD my whole life, but I have never reacted to foods.  I don’t have a nut allergy, or a gluten allergy, for example and have always been able to eat whatever I like.  I know I’m extremely lucky and many of my readers aren’t so fortunate.

I only started reacting to food when I was in my mid forties.  It came on gradually over a few years.  Bright red flushing after meals, increasingly itchy skin, hives which I’d never had before and out-of-control acid reflux.  Eventually in 2013 all hell broke loose and I started having anaphylactic reactions after I ate anything – severe palpitations, muscle spasms (particularly in my gut and back), weird head rushes that felt like I was having a stroke, anxiety (obviously the whole situation made me anxious, but the adrenalin fuelled anxiety from anaphylaxis is a different thing altogether), huge spikes then huge crashes in blood pressure, and eventually I’d just pass out.  It was terrifying and I had absolutely no clue what was going on.

To cut a very long story short I paid to see Dr Seneviratne at St Mary’s, who tested my DAO levels which were well below normal and he diagnosed me with Histamine Intolerance (HIT).  I’d never heard of the disease before so it was a steep learning curve!   Most foods contain small levels of histamine but some foods contain large amounts.  I don’t eat meat, and it turns out that many of the staple vegetarian foods I was eating every day (cheese, tinned tomatoes, soya beans, spinach, aubergiene) are all high in histamine :-/  Our bodies also produce histamine as part of the digestive process which is why I could react some days after drinking just water!   Fortunately we have a couple of enzymes in our bodes, DAO and HNMT, which ‘mop up’ the histamine we ingest so that it doesn’t cause us any problems.  For people with HIT, however, the enzymes are low or not working correctly so the histamine we eat in foods, and the histamine produced from digestion, accumulate in our bodies.  It’s a bucket effect – the more histamine we eat the more it builds up, and eventually the bucket overfills and we have a reaction.  No one specific food does this – it’s a cumulative effect.  I embarked on a low histamine diet and within 4 months my food reactions were under control – they hadn’t gone, but they were manageable.

There are various reasons why, if we suffer from Histamine Intolerance, our DAO and/or HNMT levels could be low.  For example, they can be reduced by taking certain medications, in which case if you cease taking the drugs the enzymes should return to normal and the HIT would only be temporary.  In my case, however, I have no idea why my DAO isn’t as it should be – I wasn’t on any drugs, my diet was very healthy and I hadn’t had any major tummy bugs or infections.  For me, HIT seems to be a permanent problem and if I veer off my low histamine diet the anaphylactic reactions come back within a couple of weeks 😦

Because histamine build-up in HIT is a bucket effect, I can often have no problems eating my breakfast in the morning but I can quite often react to my dinner in the evening, because histamine has accumulated during the day.  So I tend to eat my main meal at lunchtime and just have a small snack at night.

The food issues faced by HIT patients are very different to the food issues faced by many Mast Cell Disease patients.  In MCAD the immune system is treating totally normal foods as a foreign invader and mounting a defence against them.  It could be any food and will differ from patient to patient.   It is not a build-up and the reaction comes on soon after the food is eaten (although some people do have mild, delayed reactions which muddies the waters!).  In MCAD our mast cells release chemicals including, but not limited to, histamine which then gives us an allergic-type reaction.   Our immune system doesn’t care whether the food is high in histamine or not – it can react to any food it likes which makes treating MCAD food reactions much harder than treating HIT food reactions!   For some people with MCAD the immune system is so over-reactive they are left with only a handful of foods that are ‘safe’ 😦

It’s important to note that in MCAD the immune system doesn’t just react to food – our mast cells can react adversely to just about anything in our environment.  My biggest reactions are to drugs – my mast cells hate them – but I also react to stress, hormones, some smells, pollen, my dog and often my own emotions.

The biggest difference between HIT and MCAD, is that HIT is a food issue only Stop eating high histamine foods and it is possible to get your HIT under control.  In MCAD the issue is much, much wider and not eating high histamine foods won’t alter the fact your mast cells react to hairspray, the smell of bleach or your hamster.

MCAD and HIT are totally distinct and separate illnesses – you can have HIT without having MCAD, and MCAD without having HIT.  However, if you’re unlucky enough to have both they can definitely affect each other and I think that’s where much of the confusion around food comes from.  I have people comment on my blog that they are following a low histamine diet but still reacting to all sorts of foods and of course they will if they suffer from mast cell disease.  Following a low histamine diet will only stop reactions after eating if you suffer solely from HIT.  It might reduce your symptoms if you have MCAD, because if your body is already over-whelmed by histamine adding to the load by eating lots of food high in histamine probably won’t help the situation, but a low histamine diet most definitely won’t cure all your symptoms which are caused by factors other than food.  At least that’s been mine and my friends’ experience.  So it’s important to know whether you’re suffering from HIT, MCAD or a combination of the two because management strategies will be very different, and you can only know this if you are tested by someone knowledgeable in both diseases (easier said than done I know, especially in the UK).

As far as I know there is no data available on whether HIT is more common in the mast cell disease population.  It would be interesting to know if there’s a link, because every piece of the puzzle is important when we’re trying to work out what causes disease and how to treat it.

 

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Re-introducing foods

I was doing so well on my ‘low histamine’ diet that last year I decided to re-introduce some foods I’d been avoiding – you can read all about it here.  Initially they seemed to be having no effect on my histamine load whatsoever and I was all smug, but as time went on my histamine bucket began to fill up.  After about 5 months my body was definitely not happy and I was having some symptoms I’d forgotten existed, like pins and needles in my bowel after eating, having to get up in the night to pee, insomnia and hay fever symptoms.

Here’s the thing about Mast Cell Disease though – it’s easy to say “it’s my MCAD playing up because I’m eating x, y or z again” and in some respects this turned out to be the case, but in others not.  My best mate doesn’t have MCAD but she does get hay fever really badly and at Christmas she told me her hay fever had gone berserk, as had a friend of hers.  December is the middle of winter here in the UK and it’s been freezing.  There’s no way on earth there should be any pollen around, but our symptoms seem to say otherwise!  I live surrounded by woodland and am truly allergic to some tree pollens, so we can only assume spring will come early this year.

My hormones have also been seriously out of whack in recent months and from reading menopause forums even healthy women can develop allergy symptoms during this time in their lives along with pain and insomnia.  So how much of my symptoms are down to my hormones, rather than what I’m eating, is impossible to tell.

My EDS has also gone absolutely nuts and the inflammation from that isn’t doing my body any favours.

Having said all that I just had a sneaking suspicion that all the chocolate I was eating wasn’t helping the situation so I cut it out.  And I definitely feel my histamine levels have dropped as a result.  I still have no reaction at all to baker’s yeast in normal bread, lemon juice and store bought mayonnaise so am continuing to include those in my diet which makes eating lunch out a shed load easier.

If I could re-introduce one food it would be tinned chopped tomatoes.  As a vegetarian tomatoes are in everything and, dammit, they taste good!  I substitute tomatoes for my home made red pepper sauce in recipes and this has worked great, but I spend an awful lot of my time and energy making the sauce and it would revolutionize my life to not have to do that.  So I’m toying with the idea of re-introducing tomatoes and seeing how I get on.  I’m not sure now is the best time, however, with hay fever season approaching and my hormones so out of whack, so I’ll let you know what I decide.

I forgot to tell you all that over Christmas I found some delicious mints with allowed ingredients.  Bassetts Mint Creams contain sugar, glucose syrup, water and mint flavouring and are available from Sainsburys, Morrisons, ASDA and Ocado and are suitable for vegetarians.  No more having to faff about making my own mint fondants when I fancy a special treat 🙂

Diet update

I barely mention food on my blog these days.  That’s because, touch wood, I don’t have many issues with food any more.  Note the word many, not none, because my Histamine Intolerance isn’t cured just managed and my Mast Cell Disease is here to stay.

I do still stick to a low histamine diet, if such a thing exists, and have been on it now for 3 years.  Being pesco-vegetarian I used to eat a lot of fish, including loads of tinned tuna, and a LOT of hard cheeses and I think it was these two items which were the biggest histamine load in my diet.  I no longer eat hard cheese (God I miss Cheddar and Parmesan!) but do still eat soft, immature cheeses like mozzarella, mascarpone and ricotta on a daily basis and am doing fine with them.

I still eat Salmon twice a week but instead of going for fresh I eat wild salmon which is gutted and frozen on the boat on which it’s caught (according to Tesco), thereby reducing its histamine content.  I have no problems with eating Salmon, though I steer clear of any other fish as I don’t know how old it is or when it was gutted.

The other food item I used to eat tons of is tinned tomatoes and, while there is no evidence that tomatoes are high histamine foods, I still avoid them simply because I’m scared not to!  My diet is working and I’m not tampering with it too much.

Having said all that, when I wrote my ‘Histamine in food: the evidence‘ post the lack of research or testing for histamine in most of the foods I avoided was startling, so I decided to re-introduce some of my favourite foods and see how it went.  For several months now I’ve been eating normal bread containing yeast, chocolate (so long as it didn’t contain soya lecithins as soya is proven to be high in histamine – see list at end of post), lemon juice and small amounts of products which contain vinegar like store bought mayonnaise.  I’m happy to report I’ve noticed no increase in my histamine symptoms whatsoever 🙂  And being able to eat normal bread when I’m out and about and chocolate when I’m hormonal has made my life a whole lot easier and happier!

I do still have a reaction to food sometimes but I’ve worked out it’s not usually the food per se, it’s how high my histamine bucket is on any particular day.  Stress creates histamine for me, so if I’m having a stressful day by evening my histamine bucket is fairly full and I can feel a bit weird after my dinner regardless of what food I eat.  Digestion produces histamine in and of itself, so just the very act of eating can tip my bucket over into a mild reaction.  It’s not nice, but I know it won’t kill me and will settle in an hour or two.

Hormones affect my histamine load substantially and I am always more reactive to everything the week leading up to my period, so again I can have mild reactions to anything I eat during that time regardless of what the food is.  As I’m in peri-menopause my hormones levels are all over the place, so I think I may be in for a bit of a rough histamine ride in the next 5 years as I finally go through The Change.

The seasons affect my histamine load too.  I am allergic to birch pollen, so in Spring when Birch trees are in bud my histamine load is high and I can again react to foods that wouldn’t normally bother me.

Having said all that, my reactions are nothing like they used to be.  I used to have pounding tachycardia, severe flushing, bad muscle spasms, nausea and retching, severe anxiety, head pain and just generally feeling awful to the point where I absolutely had to lie down.  This was followed by crippling exhaustion which took several hours to subside.  These days my reactions are much less intense thank God.  I still have tachycardia and my BP readings are about 150/90  with a pulse rate of around 90 (my normal readings are 115/57, pulse 65), which isn’t pleasant but isn’t life threatening.  My flushing is minimal and although I do still feel nauseous I don’t retch like I once did.  I feel anxious but it’s manageable, no head pain and I feel tense rather than having outright muscle spasms.  Having a reaction still isn’t nice but at least I know what it is and how to manage it (usually by having a soak in a warm bath followed by distracting myself with crocheting or doing something on the laptop).

As my histamine levels are generally quite low from following a low histamine diet, I can “cheat” on my foods now and again.  When I eat out, which is maybe twice a month, I tend to just choose whatever I like on the menu – cheese, tomatoes, fish, marmalade, sultanas and other dried fruit and anything else I fancy.  It’s very rare I react to anything until my histamine levels are already high from something else, eg the pollen season.  I know I’m lucky to be able to do this as I don’t have true allergies to foods – mine is definitely a histamine load problem and as long as my histamine bucket is kept low I can fill it now and again without it overflowing.

When I first started to reacting to foods I honestly thought I would die.  I had no idea what was going on and had no clue how to fix it.  Going on a low histamine diet was tortuous – I already had everything I ever wanted in life taken away by illness and meals were the one thing I still enjoyed – my dinner was something I looked forward to all day and having a warm mug of hot chocolate and a couple of biscuits before bed helped me sleep!  Having to quit my favourite foods felt like the last straw and I dreaded mealtimes.  On top of which, I could no longer eat ‘convenience’ or store bought products so had to cook every single thing from scratch, which took up every ounce of energy I possessed.  My entire life revolved around making food and then being terrified to eat it.

Fast forward 3 years and I now batch cook and freeze, which gives me a break from cooking every day.  I’ve found what I can, and can’t, eat and have managed to find substitutions like my red pepper sauce which means I can still make my favourite recipes.  I’ll be honest, they don’t taste as good but I’m used to them now and at least I’m enjoying my meals again.  I’ve even found naughty snacks that I really like, such as Jacobs Cracker Crisps that are terrible for me nutritionally but when I’m miserable and want to eat crap they taste delish 😉  And there is nothing nicer on a hot day than a dish of vanilla Haagen-Dazs ice cream topped with a chocolate Flake!

My intention is that this update gives those of you in the early stages of histamine intolerance hope that your symptoms can improve, that meals can still be enjoyable, that comfort food isn’t banned forever and that eating out isn’t a thing of the past.

For anyone who wants to try eating soy-free chocolate here are the products I’ve found which use sunflower lecithins instead of soya:
Quality Street mint flavour Matchmakers
Cadburys Flake
Cadbury Twirl Bites
Toffee Crisp Sharing Block
(all of these are also gluten free)

Post Reaction Stress Disorder

Anyone who has MCAD will understand the title of this blog post.  I refrained from using the term ‘Post Traumatic Stress Disorder’ because it’s a very serious mental health issue and I don’t have it, but I’m close.

I am phobic about taking drugs, or even trying new foods or drinks.  Truly phobic.  I only have to think about taking a drug and I get palpitations, my whole body feels weak, I feel nauseous and my anxiety level goes through the ceiling.  You might as well ask me to put my hand in a fire.  It’s become so bad that I have a panic attack giving drugs and supplements to my dog, even though he’s never had a bad reaction to anything in his life.

I had my first drug reaction when I was 16 years old, had my first truly allergic drug reaction when I was just 17 years old – y’know, the scary kind where you can’t breathe – and I’ve been having them ever since.  I’ve now had going on two dozen drug reactions and I don’t want another one in my life.  Ever.

The thing I can’t get anyone, including Doctors (particularly Doctors) to understand is that the reaction doesn’t stop when the drug (or whatever has caused the reaction) is out of my system.  Oh, how I wish it did.  My body instead seems to get stuck in the reaction and can stay there for days, weeks, months.  It makes sense when you think about it – mast cell activation perpetuates/causes further mast cell activation – round and round it goes until something breaks the cycle, which for most people is Benedryl or steroids or other anti-histamine drugs but of course I’m allergic to all of those so breaking the cycle for me is nigh on impossible.

Just so’s my readers know, I will never try a drug, supplement, herb or treatment that you kindly recommend and which has helped you. I was bedridden for 3 months after trying osteopathy.  I had to be blue lighted to hospital via ambulance at 3am after one five minute chiropracty appointment and was so ill for the next 9 months I had to go live with my parents.  I pulled acupuncture needles out of my skin myself after the therapist left me alone for a 10 minute treatment and I could feel anaphylaxis coming on.  I spent the night (and the following 4 days) pacing the floor, puking and wanting to tear my skin off after drinking a cup of herbal tea containing hops and valarian.  And I haven’t even mentioned my drug reactions yet, which are so severe I honestly can’t bear to even write about them, or food (I’ve been trying to pluck up the courage to try a cup of camomile tea for about 2 years now and still haven’t managed it).

The blase attitude of Doctors to my drug reactions staggers me.  They write me a prescription then send me home, where I live alone miles from anywhere, to take the drug and have a potentially fatal anaphylactic reaction with no backup plan (I don’t even possess an epi pen and would be too terrified to use it in any event in case it made my reaction worse!).  It’s outrageous.  Any new drug I try should be done in hospital under medical supervision – anything else is negligent.

I am genuinely pleased when a drug, herb, supplement or treatment has helped one of my readers.  However, to tell me about it is a bit like saying to a man with a peanut allergy “peanuts cured me, you should try them”.  It’s kind’ve insensitive. If you’d been bitten by a dog 20 times you be pretty wary of dogs.  There will always be owners who come along and say “oh my dog is lovely, he’d never bite you”, so you trust them, go to stroke the dog and the little fucker bites your finger off.  The owner walks away muttering “well he’s never bitten me or anyone else I know!” like him biting you is somehow your fault and you’re the one left having to live with only 9 fingers.

I am the most drug allergic person I know probably anywhere in the world and by drugs I also mean herbs and supplements.  If I can react badly to eating an organic apple which is a totally natural product you can bet I can react badly to just about anything.

I don’t mean to sound whiney or ungrateful to the suggestions put forward by people who are only trying to be kind and helpful.  But I just wish sometimes there was a little more thought and understanding for my situation.  I want more than anything to improve my health – I’ve spent more than two decades trying to control my symptoms and everything I’ve tried (bar a low histamine diet) has made the situation ten times worse sometimes to the point of almost killing me.  I gave up stroking dogs, even those who are “friendly and wouldn’t hurt a fly” and now just keep a wary and sensible distance.

 

There’s a shock in store!

Happy new year everyone – I hope you’ve managed to have a crisis-free holiday and that Santa was good to you 🙂

This is just a short post to say I know I’m being quiet but that’s because I’m working on the Histamine pages I talked about before Christmas.  It’s actually a really complicated area and is taking much, much longer than I’d anticipated consequently I might be quiet for another week or so while I sort all the information out – bear with me.

What I’ve discovered so far has shocked me to the core.  The lack of actual evidence for histamine in foods, let alone histamine liberators or DAO blockers is staggering.  I have absolutely no clue what most people base their dietary advice on :-/  Actually, that isn’t true – it seems to be chinese whispers.  One website or person makes a statement, which is picked up by the entire rest of the world who doesn’t bother to question where the information has come from.  Occasionally I’ve found websites or papers which do quote research references but when I’ve read the citations they turn out to be over a decade old and only carried out by 1 research team and even then not in any kind of randomized double-blind controlled way, or they’ve been carried out on rats or in a test tube which often bears little resemblance to the reality of human beings.

There appear to be only 3 companies world-wide who actually have databases of the histamine content of some foods, but the information is only available to Government bodies, those working in the health or food industry, or when used for commercial purposes like producing an app.  I certainly don’t have access to them and have no idea how accurate they are.

So my friends, prepare to be even more baffled than you already are about what you should, or should not, be eating and why!

Festive food

The holidays are tough when you have to follow a restricted diet.  I can’t believe I used to binge on After Eights, mince pies, Pringles and Matchmakers……I miss those days sitting in front of the Christmas episode of Downton Abbey stuffing my face with junk 😉  However, Christmas doesn’t have to be a complete let down and it’s still do-able to enjoy some festive food without breaking out in hives.

Here’s what I’ll be eating over the holidays, copied from last year.  I know many of you won’t be able to tolerate everything I do, but hopefully you can substitute the foods you can eat and still be able to join in with festive mealtimes.

Main Meal

I don’t eat turkey as I’m vegetarian so will substitute a Quorn ‘chicken’ flavour roast which contains only 7 ingredients all of which I can pronounce and I know I don’t react to, though if you’re a meat eater getting a fresh turkey at Christmas really shouldn’t be a problem.  I could also make my own nut roast or use store bought organic Felafels.  I can eat potatoes, so will have both roast and mashed, and love my yorkshires.  I also love root veg such as parsnips, carrots and squash roasted in olive oil in the oven, but will leave out brussel sprouts for no other reason than they’re the Devil’s own vegetable 😉  Apple sauce (home-made – see the Recipe page) is fine on a low histamine diet, though I’ll steer clear of the cranberry sauce (berries are questionable histamine-wise, plus it’s bought in a jar so probably contains all sorts of preservatives).  I’ll also make my own gravy (see Recipe page).

Photo of Quorn meatloafDessert

Dried fruit laden Christmas pudding is out, so we’re having a home-made sponge with a toffee sauce topping and home-made custard.  Job done.  Lots of desserts are fine to eat on a low histamine diet, however, see the Recipe page for inspiration.

If you usually have cheese and crackers after dessert that’s also do-able on a low histamine diet.  Carr’s Table Water crackers only contain 3 ingredients (flour, salt, vegetable oil) and although you can’t top them with hard cheese you can use a nice soft one like  Ricotta or Philadelphia (optionally mixed with herbs of your choice) or a cheese alternative such as Violife which is made from coconut.

To round off the meal us Brits often have a cuppa and an after dinner mint.  If you can’t find any with suitable ingredients make your own peppermint creams (see the Recipe page) which can be prepared well in advance of the day.

Photo of peppermint & carob creamsDrinks

Obviously alcohol is out on a low histamine diet, so you’re going to have to get used to being tea-total (I haven’t touched alcohol for over two decades and I’ve lived to tell the tale 😉 ), but there are some nice soft drinks you can have over Christmas such as:

  • ‘Belvoir’ Elderflower presse or cordial
  • ‘Bottlegreen’ mango & coconut presse
  • ‘Poms’ pomegranate juice
  • ‘Eden’ carrot juice
  • Apple juice or presse
  • Or, of course, you can make your own freshly squeezed fruit and veg juice if you have a suitable juicer and mix it with some fizzy bottled water.

Note: some of these contain citric acid as a preservative, but a little bit over Xmas isn’t going to kill you.

Snacks

We all traditionally eat crap over Christmas, and while you can’t tuck in to the Milk Tray or Bombay Mix there are snacks you can indulge in which, while not particularly nutritious, shouldn’t add to your histamine burden:

  • Plain tortilla chips (check ingredients) either on their own or dipped in mango or tomato-free salsa (see Recipe page).  Tescos lightly salted tortilla chips contain maize, sunflower oil and salt.  Gluten and dairy free.
  • Home-made plain or butter popcorn.   Gluten free, and dairy free if eaten plain rather than with butter sauce.
  • Home-made butter fudge (can be made in advance and frozen).   Gluten free.
  • Fresh nuts (if you tolerate them) which my diet allows but other diets restrict.
  • Romney’s Kendal Mint Cake (sugar, glucose, oil of peppermint).  Gluten and dairy free.
  • Ready salted or plain crisps (check ingredients).  Walkers only contain potatoes and vegetable oil and are scrummy.  Kettle and Hoola-Hoops are also fine ingredient-wise.  Or you can make your own vegetable crisps from thinly sliced beetroot, parsnips or sweet potatoes brushed with oil and sprinkled with salt then baked in the oven.  Gluten and dairy free.

My best advice is not to try anything new over the festive period.  Spending hours in A&E after you’ve reacted badly to something you’ve eaten is no-one’s idea of fun.  Stick to things you’ve tried or eaten before and know are safe.

Being invited to someone else’s home for a meal over the holidays is tricky.  I tend to just say no and, rather than explaining about my food issues which are met by looks of disbelief, whisper that I’m having some tummy troubles and having to be really careful about what I eat otherwise I end up on the loo for hours.  People just accept this, as talking about bowel habits is still thankfully taboo 😉  If you absolutely have to eat at a relative’s house you can always cook your own meal at home, plate it, cover it with cling-film and just re-heat it when you get there (even though reheating increases the histamine burden slightly – if you’re following a low histamine diet your overall histamine load should be relatively small, so doing this shouldn’t tip you over the edge and into a reaction).

We’re not the only ones who struggle to eat out.  My best mate is Coeliac and doesn’t even eat at my house, despite my knowledge of all things gluten, because my kitchen is contaminated by wheat particles.  She had a Christmas meal at her sister-in-law’s house a couple of years ago where she ate some cheese not knowing it contained gluten, which affected her Coeliac test 3 months later (we still can’t understand why gluten would need to be added to a bag of grated Cheddar!).

Parties or get-togethers where there are just nibbles rather than a full-on feast are easier.  You can just take your own snacks and take your own bottle of alcohol-free drink.

I hope, whatever diet you have to follow, you can find something nice to have over the holidays.  Bon appétit 🙂

The Big D

My body never fails to amaze me, and not always in a good way.  I have been constipated my entire life due to my Ehlers-Danlos and the only time I’ve ever had diahorrea has been when I’ve had a tummy bug.  Until the past two months, when we appear to have become intimately acquainted.

Most people with Mast Cell Disease have diahorrea for reasons not fully understood and since becoming allergic to antihistamines I’ve joined their ranks.  It sucks.  You’re proper uncomfortable when you are constipated but at least you don’t have to spend your life wondering where the nearest toilet is or with your insides gurgling like a washing machine on the spin cycle.


Despite being constipated my whole life, I’ve never had a huge amount of wind either up or down.  All this has now changed and I’m farting so much I could launch a hot air balloon.

I could cope with all this, just, if it weren’t for the pain.  I hurt from my throat to my bum.  My entire insides feel inflamed and the pain is sometimes so acute I’m literally doubled over.  It’s been so bad I’ve actually been scared there is something else, something more sinister, going on but you can bet if I had every investigation under the sun they’d find nothing other than inflammation and it’s not worth months of stress and hospital appointments just to confirm something I already know.  According to research, stomach pain is in the top three symptoms for people with Ehlers-Danlos and experienced by up to 85% of sufferers.  Add MCAD to the equation and I’m basically stuffed.

I’m still having random mast cell reactions, sometimes mild, sometimes not so mild, after eating.  Palpitations, wildly fluctuating blood pressure, severe nausea, cramps, severe fatigue, anxiety, euphoria and all simply because I’ve eaten, or in some cases, drunk something.  My reflux is horrendous, ditto with the nausea, I was wide awake and watching telly at 4am last night (again) and my brain feels like its been trampled by a herd of wild elephants.  I do not have my happy head on.

I am drinking enough ginger, peppermint and camomile tea to sink a ship and wearing my TENS machine on my stomach for the pain, which is actually rather weird and uncomfortable and I’m not sure helps in any event.  I dread meal times and the only relief I have is the four hours or so I manage to sleep at night.

Over the years I’ve come to terms with my M.E. and my EDS.  My body does its best to keep the equilibrium and, as long as I stay within my limits, both conditions are manageable.  Not so with MCAD.  It feels like the enemy.  Every single thing which might help, from antihistamines to steroids, mast cell stabilizers to supplements, I react to – the disease thwarting the very things which I know would bring me relief.  No matter what I do it always has the upper hand and there are days when fighting it is just so exhausting I simply want to give up.  Enough with the never ending suffering already.