Tag Archives: low histamine diet

No time to cook

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

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

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

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

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

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

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

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

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)

Not all diseases are born equal

A couple of people have asked me why I was upset that EDS UK allowed the Low Histamine Chef to write an article in their charity magazine – after all, the Chef has MCAD and so do an estimated 1 in 10 EDS sufferers, so what’s my issue?

Not all diseases are created equal.  Let’s look at Diabetes for example.  There are two types: type 1 diabetes and type 2 diabetes.  In type 1, the pancreas doesn’t produce any insulin.  Type 1 diabetes usually appears in childhood and often runs in families which indicates there is probably a genetic component.  There is no cure and sufferers will need insulin for the rest of their lives.

In type 2 diabetes the pancreas doesn’t produce enough insulin, or the cells in the body don’t respond properly to the insulin produced.  It usually doesn’t appear until adulthood and is mainly due to lifestyle choices, eg an unhealthy diet, obesity and lack of exercise.  While there is no cure, changing your lifestyle can stabilize symptoms and initially sufferers may need no extra treatment other than this.

Which leads me on to MCAD.  An estimated 1 in 2000 of the general population develop MCAD in adulthood, whereas 1 in 10 of the EDS population have MCAD with symptoms often appearing in childhood.  Obviously there is something about having EDS that interferes with mast cells in a way which isn’t seen in other forms of mast cell disease.  Just like diabetes, there is a suspected genetic link to the type of MCAD seen in EDS patients which is usually absent from MCAD in the general population.  With different reasons for the mast cells misbehaving, EDS-related MCAD and general MCAD are going to need different treatments.

I’m delighted that the Low Histamine Chef has stabilized her MCAD through diet and meditation, but just like altering lifestyle won’t work in type 1 diabetes I’m unsure this approach will work for EDS-related MCAD, where the mast cells are faulty due to a genetic disease.  Yes, you can help symptoms by eating a low histamine diet, staying away from your triggers and taking medication (just like a type 1 diabetic can help their symptoms by not eating a diet which demands high levels of insulin), but it’s not going to cure you because diet and lifestyle aren’t the cause of MCAD in EDS.  However, altering diet and lifestyle in the general MCAD population might be all that’s needed to control symptoms to the point where they’re barely noticeable, just like altering diet and lifestyle might be all that’s needed to control symptoms in type 2 diabetes.

At least that’s my understanding, however I could be wrong – I often am 😉

MCAD look back

I started this blog in April 2013, just over two years ago, so I thought it was a good time to have a look back at how my mast cell disease and HIT has fared.

I was diagnosed with HEDS in 2010 and my mast cell disease exploded in spring 2012 (although I’d had increasing symptoms for over a decade before that), with acute anaphylactic events after every meal, sometimes even after drinking water.  After much research I was convinced I had MCAD as a resut of my Ehlers-Danlos, and began a low histamine diet.  After four months the anaphylaxis stopped and the relief was enormous.  I also began to sleep better and stopped getting up every single night to pee which I’d been doing for several years, sometimes multiple times a night.

I had horrendous reflux, however, and in August of that year plucked up the courage to try H2 antihistamines.  I initially tried Zantac but it actually made my reflux worse and gave me awful brain fog to boot, so I switched to Tagamet (Cemetidine) which I was amazed to find I tolerated well and which greatly improved the reflux.  It also helped my chronic daily nausea and my upper back pain, which we think was due to acid burning the back of my oesophagus.

I saw Dr Seneviratne in December 2013 and received my official HIT and MCAD diagnoses.  He advised adding in an H1 antihistamine and again I was delighted to find I could tolerate Zyrtec liquid (Ceterizine).  I thought it would help my sore eyes, daily sneezing and hives but sadly it had no effect.  What it did do, however, was help my period pain which has been excrutiating my  whole life.  It also helped my stomach cramps and pain, helped with brain fog and improved my nausea even further.

I ticked along for the next 12 months.  I still had occasional mild reactions to random foods for no apparent reason, and sometimes felt weird after taking my H2 antihistamine, but all in all things were fairly stable.  Until Christmas 2014 when I realized the reactions after taking the Tagamet were getting worse and I had a full on anaphylactic event at the beginning of March this year.  I had to stop taking it and, despite trying other brands, couldn’t find another I could tolerate.  I also tried three different PPIs, eg omeprazole, and couldn’t tolerate those either.

For the first few weeks without the H2 my reflux was dreadful and the pain was hard to live with.  Thankfully, though, it’s settled down now and is at least bearable most days.  My nausea, on the other hand, is horrendous and as I type this I just want to puke.  In fact, I probably will as soon as I’ve eaten my breakfast because eating anything makes me sick as all hell.  I’m allergic to any of the drugs that might help this, so it’s pointless even discussing it with my GP.  I’m also not sleeping as well as I did, and my upper back pain is really troublesome.

I’m also back to reacting to foods.  The food doesn’t seem to matter, it can be any random thing.  One day I’ll react to shepherd’s pie, the next day I won’t.  One day I’ll react to risotto, the next day I won’t.  The hour after I’ve eaten anything is pretty miserable, with severe nausea, stomach cramps, blood pressure fluctuations, and just feeling ‘weird’ and not well.  It’s really starting to get me down, as I don’t know what to do about it.  I’m still on my diet and I can’t tolerate drugs of any description so I’m not sure where to go from here (if anywhere).

Then last month I had a reaction after my H1 antihistamine, so I’ve had to stop that as well.  I now feel more fatigued, brain fogged and more MEish/fluey than usual.  As you all know, I also had the worst period I’ve had in forever this month which I’m sure is related.

Dr S did give me a prescription for Sodium Chromoglycate but I haven’t tried it for two reasons: the first is that several of my friends have tried it and it’s made them feel dreadful; the second is that, even if I tolerate it now, you can guarantee that at some stage in the future I’ll become allergic.  It’s been that way with every drug I’ve tried in the past twenty years – I tolerate it for so long then, bam!, my body rejects it.  Bearing that in mind I really can’t see much point in even starting it.

So, things are pretty miserable at the mo and quite scary if I’m honest.  I wish I had better news for you all.  I have no idea why I’ve gone downhill again and don’t know if things are going to settle down, get worse or stay the same – I guess only time will tell.