The Holy Grail

I have had a big day.  BIG.  Huge.  If you’ve never seen the film ‘Pretty Woman’ you won’t get the reference, but trust me when I say today may have been a game changer.

The Holy Grail for anyone suffering from Histamine intolerance (HIT), and people with Mast Cell Disease who find it necessary to follow a low histamine diet, is the ability to test the food we eat for histamine.  The reason it’s so vital is that many factors affect histamine formation, the main ones being how old a food is and how it’s been stored.   A lab testing the histamine content of imported strawberries that have spent weeks travelling from Israel, for example, may come up with a very different result than if they’d tested strawberries taken straight off a bush in their garden.  And how do we know if a specific strain of British strawberries have the same histamine content as a specific strain of Spanish strawberries?  The answer is, we don’t.  Realistically the only way to test the amount of histamine in the food we eat is to actually test the food we eat, and my food here in the UK will be different to the food you might be eating in the States, Europe, Australia, Asia or anywhere else on the planet.

In October 2018 I wrote this post about researchers at City University of Hong Kong who were developing a way of testing for histamine using your mobile phone and a sensor.  Well, today I had the joy and privilege of meeting one of the researchers, Victor Lau, while he was on a short trip to the UK.  I have been excited all week waiting to meet Victor and was not disappointed.  He was absolutely lovely and has given me permission to talk about our meeting and the home histamine testing device.

Hong Kong practically lives on fish and seafood but food standards aren’t as good as they might be, so since 2016 the researchers have been working on a way to test for histamine in seafood for use in the commercial food industry.  The research is Government funded so not driven by profit.  Until I emailed them back in October they had never heard of Histamine Intolerance or Mast Cell Diseases and are now hugely interested in our plight.  Victor made a point of telling me that it’s not through any desire to make money out of us – they genuinely love the idea of helping patients and when the device becomes available to buy they will keep the cost as low as they possibly can.

I have to stress that the current device is a prototype and still being refined.   There’s a long way to go to reach a saleable product, not least because the results have to be rigorously accurate if you’re dealing with sick people and allergic reactions and then the device would need the relevant Governmental approval, however I’m assured that we’re only talking 3-4 months before a working prototype would be available for me to test 😮

The equipment needed for the current testing system is as follows:

• An app for your phone.  They gave me the app and it was a doddle to install on my Android phone.
• The testing device, which is about half the size of a mobile phone.
• Some testing strips – these slot into the side of the testing device and you place your food sample on the strip.
• Some food to test, preferably something which can be formed into a liquid when mixed with water.
• Some distilled water.
• Some weighing scales able to measure in individual grams.
• A dropper.

Here’s a picture of today’s set-up:

This is how the testing currently works:

• Place a sterile pot on the weighing scales.
• Measure out 1gram of food into the pot.
• Add the same amount of distilled water.
• Mix together until you have a liquid thin enough to pass through a dropper.
• Open the app on your phone – it gives you guided instructions as to how to conduct the test.
• Using a dropper, place 2 drops of the food mixture onto the end of the testing strip (that’s the small orange-coloured strip sticking out of the right side of the device in the middle left of the picture).  Wait 2 minutes for this to be measured and registered.  Wipe off.
• Add 2 drops of distilled water onto the testing strip to re-calibrate.
• Repeat another 4 times, alternating food and water.
• An average histamine content will be calculated from these 5 samples.
• At least, I’m hoping I’ve got the technique correct – I’m no scientist and it was all new to me!  I’ll show the guys this post and they can correct me if I’ve got something wrong.

Victor about to weigh tea!

The process is a little time consuming, taking about 10 minutes per food item, but it’s really easy to do.  Currently it’s not something you’d be able to do in a restaurant, but I don’t care so long as I can test the food I eat at home!  Speaking of which, Victor asked me to take some food samples along to be tested.  They’d never tried the device on anything other than seafood, so were as excited to see the results as I was!  However, the device is currently only calibrated to test for histamine above 100ppm (parts per million), which is a safe level for healthy people but of course not for those of us who have to follow a low histamine diet – we need to be able to test for 20ppm at the very least and Roy Vellaisamy, Victor’s colleague in Hong Kong who I spoke to today on the phone, assures me this should be possible.  So bear in mind today we could only say if a food was below 100ppm or above 100ppm but not give a precise figure.

I miss tomatoes sooooooo much, so the first food tested was tinned, chopped tomatoes from Tesco.  They tested above 100ppm so there’s no way you could include them in a low histamine diet 😦  However, I’d also taken with me a fresh tomato and this tested below 100ppm!  We’ve no idea, though, how much below – it could be 10ppm or 99ppm so tomatoes are still not a food I’ll be eating until I know for sure how much histamine they contain.  Interestingly, Victor re-tested the fresh tomato a couple of hours after I left, which by this time had been out of the fridge and in a warm environment for several hours.  It now tested above 100ppm, which on the surface looks as if histamine had formed rapidly in the warm environment in which Victor was testing.  However, it may not be quite that cut and dried.  We only know it initially tested below 100ppm, but we don’t know by how much – it could actually have been 99ppm.  And in the second test, we only know it tested above 100ppm, but again we don’t know by how much – it could just be 101ppm.  Of course, on the other hand it could be that it tested as low as 30ppm on the initial test, but after being kept at room temperature for several hours it had reached histamine levels of 190ppm!  The ability to test precise levels of histamine in a food sample is something which would be vital to us if the device were to be useful to us as a patient population.

The next food I wanted to test was a good old British brew (well, actually, my tea was organic black Clipper tea from some far off land 😉 ).  I was gutted when this tested above 100ppm (and that’s without adding milk) but I have to be honest and say I still don’t think I can give my daily cuppa up.  Histamine is a bucket effect, and as long as my bucket is low from eating foods low in histamine the odd cup of tea shouldn’t fill the bucket too much and tip me over the edge and into a reaction.  That’s my excuse anyhow and I’m sticking to it 😉

By this time my train home was almost due, so I had to leave my other samples with Victor to test in my absence.  I’d taken some Quorn mince and some cocoa powder, so I’ll let you know the results when I have them.

Today has felt like a watershed day for those of us with HIT and/or MCAD.  I can’t stress enough how interested both Roy and Victor are in our situation, how generous and lovely they are being with me and how much they genuinely want to help.  It certainly makes a change from the usual way we rare disease patients are treated.  I told Victor that HIT seems to be much more recognized in Germany than here in the UK, and he luckily has a close colleague who lives in Germany whom he can find out more from.   For my part, I gave him Dr Seneviratne’s details being as though he’s the leading HIT & MCAD doctor in the UK and is so knowledgeable on all things histamine.

Victor stressed that they want to make a device which is useful to us, so if any of you have any questions please do comment below this post and I’ll forward them all.  I have every faith that, with a bit of tweaking, the device could be brilliant for us – the ability for you to be able to test the food you eat, and for me to be able to test the food I eat, would be awesome and something I didn’t even dream would be possible.  Not only that, but Victor thought it wouldn’t be too difficult to develop the device to test for things other than histamine – nuts, for example, or gluten!  All that would be needed is a separate testing strip whose receptors bind to gluten instead of histamine – the rest of the testing kit, ie the app and device, would remain the same.  Imagine the possibilities in our modern world where food allergies are rampant!

Watch this very exciting space 🙂

 

 

 

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One In A Million

Overnight my blog received its 1 millionth visitor.  It’s gobsmacking to me.  Seriously gobsmacking.  Here I am in the middle of nowhere, surrounded by sheep and farmers, spending 17 hours of every day in bed feeling like road kill and over a million people have read something I’ve written, including someone from Vatican City and one of the world’s leading MCAD doctors.  Mind-seriously-blown.

I started my blog because I felt like I was the only person in the world to be diagnosed with not only M.E., but also hEDS, HIT and MCAD.  I had no clue there were thousands of other disease-triad sufferers out there and finding you all has helped me feel less alone.  And there have been many times that I have felt utterly, utterly alone not least because I’ve lived on my own since I developed ME back in 1994 and have never had anyone to care for me no matter how sick I’ve ever been.

My blog has always been a bit like an online diary – a place where I could offload because in real life I had no-one to offload to.   I include information on my diseases I’ve found along the way which I hope you’ve all found useful, but in essence my blog is written for me.  The fact that anyone ever bothers to read about my shitty life and my even shittier illnesses is simply the icing on the cake 🙂

I know I’m not everyone’s cup of tea.  I loathe when people come on my blog and tell me I should be doing this, or I should be doing that – unless you have access to my medical records and are menopausal, 51, have M.E., HIT, MCAD, hEDS, Endometriosis, Adenomyosis, Polycystic ovaries and severe migraine disorder for over a quarter of a century you and I are not the same and you have no clue what I should, or should not, be taking, eating or doing.  So I know I get tetchy with some of my visitors but that’s because they’re giving me advice that I absolutely did not ask for.

It’s also been levelled at me that I don’t like anyone to disagree with me.  Quite correct.  It’s like reading someone’s diary and disagreeing with their thoughts because they’re not the thoughts that you have.  I can think and feel any fucking way I like and just because it’s not how someone else might think and feel doesn’t make it wrong.  I wish more people got that and gave each other space to express their own unique and individual opinions and thoughts without feeling the need to constantly challenge them with a “yes, but……”.  These days, if someone writes a comment that starts off evenly remotely negative I simply don’t read it.

My blog has evolved just as I have evolved.  My knowledge has changed and grown over time and I think differently about many things in 2019 than I did back in 2013 when I was newly diagnosed.  I don’t pretend to know everything about everything.  I know enough to manage my diseases and that’s all.  Having said that, I’ve survived meningitis, cheated death twice, got back on my feet after being bedridden for a decade, fought for my hEDS and MCAD diagnoses when they were relatively unknown illnesses, survived countless anaphylaxis attacks and am fit enough to do a hobby I love, to live independently and to occasionally walk my lovely little dog – and all without any knowledge of genetic mutations and methylation cycles not to mention eating gluten, sugar and dairy every day of my life alongside Pringles, Starburst and a few gallons of tea 😉   However incorrectly some people think I’m living my life I’m obviously doing something right, for me at any rate.

Blogging so openly and publicly about your life is not for the faint hearted.  You make yourself vulnerable to spammers, stalkers, weirdos, the angry, the depressed, the dismissive, the judgemental, the just plain nosey and the downright bloody rude.  But in return you also open your life to friendship, support, knowledge, encouragement, understanding and laughter – and it’s that which keeps me going 🙂

Thanks to you all for caring about me and my struggle.  For sharing in my journey and for sharing yours with me.  You’re one in a million and I am thankful for you.

Weekly roundup

By next weekend I’m hoping to have some BIG news to share with you!  I’m really excited, so keep an eye on your inbox at the end of this coming week.

Monday my cough was so bad I had to ring my doctor.  She palmed me off onto the nurse practitioner who is about as much use as a chocolate fireguard.  My chest is clear, as I knew it would be because I’m not coughing anything up.  My breathing test was over 500 – it was excellent even when I had pneumonia, because I have hEDS and my lungs are super stretchy.  When you have hEDS doctors absolutely shouldn’t rely on this test as a sign of how healthy your lungs are!  So in her own words the nurse practitioner told me “I don’t know what to do with you”.  Super.   She then started asking me about my MCAD, HIT and hEDS.  Er, why?!  She then wanted to refer me to a fucking dietician, like that would help my cough.  I did point out I’d been diagnosed with HIT for over 5 years now and was managing fine thank you very much, and in any event no dietician in Cumbria is going to have even heard of Histamine Intolerance and I would be teaching them about the disease!  She then wanted to refer me back to Dr Seneviratne……….for a cough!!  Jaysus.  So I explained to her that I’m fairly sure my cough is down to reflux and to give me a prescription for an H2 blocker, Famotidine.  I became allergic to it a couple of years ago but now I’ve had a break my mast cells might tolerate it for a week or three until my cough settles.  She gave me the prescription and just about shoved me out the door.   Thankfully my mast cells are so far accepting the drug, though to be honest my cough isn’t much better

Also on Monday I’d had enough of waiting for the hospital to book my Dad in for his full body CT scan.  It’s been 7 weeks now since his lumbar puncture and he’s supposed to be under the care of the emergency neurology clinic!  So I rang the Neurologist’s secretary who said the referral had been made but no appointment yet was showing.  Apparently we just had to wait.  Funnily enough, though, only 4 hours later the scanning unit rang my Dad and offered him an appointment the next morning.  Obviously what’s happened is that the referral was made but not marked urgent, so he was placed on the regular waiting list.  It’s exhausting trying to keep on top of all this stuff, and surely to God it’s not my job to make sure someone else does their job properly

Wednesday evening I was guest speaker at my Camera Club, doing a talk on Beginners Studio Photography.  It’s taken me about six months to put a 2 hour workshop together and, Sod’s Law, I felt absolutely dreadful on the day having barely slept all week due to my cough.  I started the presentation fine, but about 2 minutes in my mind went totally blank.  A big, black hole of nothingness where my thoughts should be.  I swear I couldn’t even remember my own name, let alone what the hell I was supposed to be talking about, and I stood there in front of 40 people gaping like a fish out of water.  Eeek!  An eternity passed and eventually I just started gabbling on about something (I don’t even remember what) until my brain decided to get itself back in gear.  I was mortified.

My dog Bertie has been pawing at his face since Xmas.  Initially I couldn’t see anything wrong, but now there is a definite lump there so I took him to the vets on Friday to have it checked.  My regular Vet was unavailable, so I saw a girl who still has acne and didn’t look old enough to have even qualified as a Vet.  Her diagnosis was “it could be anything from an ingrowing hair to a cancerous melanoma”.  Hmmm, Dr fucking Google told me that much!  Your job as a Vet is to say which type of lump it is, because one is a bit annoying and the other could kill him.  FFS.  She’s given him some Piriton to settle the itching and I have to go back in a week.  Why do I have to go back in a week?  He’s already had the lump for seven weeks now – is that not long enough to show it’s not going anywhere?  I have no faith in anyone these days.

I found out this week I’ve won a medal in an International Photography Salon based in the Netherlands 😀  There were 5,500 entries from across the world and only 12 medals were awarded so I’m proper chuffed.  However, they didn’t tell me which medal I’d won, ie bronze, silver or gold, or from whom, eg. the Photographic Society of America, the Federation of International Photographers etc., so I emailed to ask.  I received no reply.  I was telling a Camera Club colleague and his reply was “why does it matter which medal you got?  I have a drawer full!”  Well bully for you.  He’s been a photographer for nearly 40 years, whereas I’ve only been doing it for 5, and he’s healthy whereas I’m chronically ill.  Why are some people just so fucking mean spirited?  I’m genuinely thrilled when someone at my Club gets recognition for their skills, because I know what’s involved and all the hard work they’ve had to put in.

Y’know I wrote a post recently about wanting to go and live in a cave?  Well this is why.  All the little things which happen every day to chip away at my faith in humanity.  Doctors should know why you’ve been coughing for 2 months and if they don’t they should investigate.  Urgent appointments for progressively crippling diseases should be made urgently.  Vets should know the difference between an ingrowing hair and cancer.  And people shouldn’t be bitchy when you do well.  What the fuck is wrong with the world?

I was bored on Friday night, so decided to do some light painting photography.  It involves shutting myself in a pitch black room for hours with a torch, which I appreciate isn’t everyone’s idea of a good time but I find it fun 😉  Holding the shutter on the camera open for extended periods, you paint light with the torch onto an object, lighting tiny bits at a time.  You then stack the bits together in Photoshop, which gives a picture you couldn’t achieve in any other way.  I ended up with this photo which in the end took about 6 hours to make but I think is pretty.

Right, breakfast is calling.  As I lie in bed here typing the sun is coming up over the Pennine fells, the sky is a spectacular shade of pink and purple and the birds are chirping their hearts out.  I’ll enjoy my walk with Bert this morning 🙂

 

Weekly roundup

There has been no blog post this week because I’ve had my period and felt like road kill.  Not only has Aunt Flo mowed me down she’s backed up and run over me again, just in case there was a part of my body she didn’t mangle the first time.  Bitch.

I’ve spent a couple of days installing pull out wire baskets in one of my Mum’s kitchen cupboards.  Neither parent can bend down to reach into the back of the bottom cupboards anymore, so I thought a pull out basket would be the solution.  I didn’t think through installing 32 screws in a 30cm wide cupboard but.  My drill didn’t fit as it was too big and I could barely get my arm, let alone my head, in to see what I was doing.  The plus-side to having hEDS has always been my ability to contort myself into awkward positions but as I’ve aged I’ve stiffened up and these days a corpse with rigor mortis has more flexibility.  It was a fight and the cupboard won.

Wednesday evening was our 2nd print competition of the season at Camera Club.  They’re my favourite nights and I was thrilled to wipe the board, getting joint 3rd, joint 2nd and joint 1st with my photos 🙂  My 2nd place photo is of a child bride, and was inspired after reading about the legal age of marriage for girls around the world.  Here in the UK you aren’t trusted to drive a car til you’re 17, you aren’t considered capable of knowing enough to vote til you’re 18 but you can get married and produce another human being when you’re 16 – it makes no fucking sense whatsoever.  In some states of America the legal marriage age for girls is 12 – admittedly you need the permission of a judge, but 12?!  The Koran states that girls are ready for marriage when they reach puberty, which is my case was 11 while I was still at primary school.  In Iran, the legal marriage age for girls is 9.  Needless to say, in most countries the legal age of marriage for boys is much older than it is for girls, yet sex at a young age wouldn’t physically damage them and they aren’t at risk of dying from childbirth.  The way girls are treated makes me FURIOUS.

I received not one but two invitations in the post this week!  I never get invited anywhere by anyone so it’s a real treat.  The first invitation is to a wedding……..in October.  Is it usual to send out wedding invites nearly 9 months in advance?!  The other is to a friend’s surprise 80th birthday tea at a posh hotel and the invite tells me it will cost me £20 payable on the day.  WTF?!  Who has a party and expects the guests to pay for themselves?  I wouldn’t care, but the person hosting the party is loaded.  They retired in 2004 and sold property to the value of £210,000 which they now have sitting in the bank.  I, OTOH, don’t have two beans to rub together but when I had my 50th birthday party I paid for every single thing myself – I wouldn’t have dreamt of expecting my guests to pay for my party themselves.  What are people like?!!

The past couple of weeks it’s been bitterly cold here in the UK and the hay fever which has plagued me since Christmas had disappeared, but the past few days have been milder and it’s back with a vengeance.  As I type this I am sneezing and streaming and my eyeballs are already burning.  To add insult to injury I’m also coughing my head off.  It’s reflux, and stomach acid is getting into my lungs.  I’ve had it for 2 months now and it’s seriously getting me down.  Every breath I take makes me want to cough, my throat and stomach muscles are really sore and I’m utterly exhausted.  I’m allergic to PPIs, H2 blockers and cough suppressants, so my only recourse is Gaviscon and Rennies which I’m eating like they’re Smarties.  They are not working.  In any way.  So between my wayward hormones, hacking cough, streaming nose and burning eyes I’m feeling stupdendously shit and massively sorry for myself.   If I were a dog I would have been compassionately euthanized years ago.

On that cheerful note I shall leave you.  I shall drag on my thermals and take the hound out in air heavy with allergens and despite the fact that the slightest movement makes me cough my exhausted, muzzy head off.   Some days I’m glad to be alive………today is not one of them.

Weekly roundup

I’ve had a fairly quiet week for a change and it’s been nice to relax and have some time to myself.  I had a pleasant day on Monday going up the lakes with my friend for his birthday – he was widowed 2 years ago and is still grieving for his wife, so I was happy he’d asked me out rather than moping around on his own at home.

Wednesday evening I’d agreed to do two talks at my Camera Club on various types of software.  Whenever I commit to doing something I worry myself stupid in case I’m ill on the day and have to pull out, but I was fine and it went really well, including good-hearted banter from the audience,   I was finally presented with my certificate for achieving the DPAGB back in November by an official from the Photographic Alliance of Great Britain, who also asked if I’d be guest speaker at his Camera Club in Carlisle next season which was flattering 🙂

I felt physically great at the start of the week, but rubbish by the end of it.  My brain fog today is ridiculous, every part of my body is aching and I have the energy of a zombie.  I’m currently on day 32 of my cycle so am wondering if I’m going to skip a period this time as it’s so late.  All this uncertainty, and not knowing when or if Aunt Flo is going to put in an appearance, is doing my nut in.

I spoke to the GP about my Dad.  His last B12 test twelve months ago was fine, so low B12 is clearly not the cause of his neuropathy.  She’s put him on amitriptylene for his aching leg pain and, being as though he’s also understandably a bit low, I’m hoping it will help.  She also said he most definitely should be tested for Lyme disease, so has arranged for him to have a blood test this week.  To be fair to her, she takes everything I say on board and if I request a test or referral she’s usually more than happy to agree.

I’ve had time to work on another photograph this week.  I live right next to a little village Church, which luckily is still open to the public all day.  Hardly anyone goes in the winter, so I’m able to take my camera in there and have done several photos inside.  As a teenager I seriously considered becoming a Nun but I would have been disastruous at it, on account of the fact I hate being told what to do 😉  I hope no-one is offended by my picture which I’m calling Disobedient – it was simply inspired by my story.

 

Jak’s Low Histamine Diet List

I spent the entire day yesterday re-vamping the Low Histamine Diet here on my blog.  It is now largely evidence based so at least you know the actual histamine content of the foods I list.  Bare in mind that hardly any food has been tested for histamine, so if a food isn’t listed it hasn’t been tested.  As far as I’m aware, this is the only free list available which gives actual histamine values of specific foods, so I hope you find it useful.

As you get your histamine bucket under control most people are able to occasionally eat high histamine foods without symptoms.  I eat chocolate now and again, some tomato puree on a pizza and fish in restaurants which I know isn’t as fresh as it should be and I cope with that OK – my wish is that this knowledge gives people who are newly diagnosed and currently reacting to everything hope.

I eat as wide a diet as I can get away with.  Not only in terms of fresh fruit and veg, but also treats like puddings and sugary snacks – my life is restricted enough without depriving myself any further.   It’s weird, but I react to lovely apples yet have never reacted to nutrionally-deficient rubbish like Starburst or Pringles in my life despite the fact they are packed with preverves and additives! (not that I’m complaining you understand, hell no 😉 )

This diet focuses on histamine alone, but that’s not the end of the story as you will read in the Further Information at the end of the List.  In addition, my MCAD complicates things further and makes me more reactive than I would be if I ‘just’ had HIT, so there are some days I simply have to accept the fact I’m having a reactive day and nothing I can do is going to help.  Having said all that it’s extremely rare these days that I react to any food and that’s solely down to following a Low Histamine Diet.

 

So what CAN I eat?

Following on from yesterday’s post on new research into the histamine content of non-fermented fruit, nuts & vegetables I thought I’d break down the information contained in the paper for us mere mortals to understand.

Histamine Intolerance (HIT) is thought to be caused by low levels of two enzymes: HNMT and DAO.  DAO is an enzyme in the gut which breaks down and converts the histamine we eat in our food, and if levels are low this process isn’t effective and results in high levels of histamine in our bodies (at least, that’s the layman’s version!).  In order to keep symptoms at bay, HIT patients need to stick to a low histamine diet, which makes perfect sense and has worked miracles for me personally.

However, there is very little information on the actual histamine content of foods and the researchers found that many foods excluded from low histamine diets actually have been shown to be low in histamine and therefore are safe to eat which is fabulous news!

What constitutes a high level of food histamine is currently guesswork – we don’t know what ‘high’ is, and safe levels of histamine in food probably differs from patient to patient depending on how well their DAO and HNMT are functioning.  I’m making the assumption that ‘high’ is anything over 20mg/kg but this is a purely made-up number in the absence of any guidelines.  Based on this, then,  the only non-fermented plant foods tested in this research paper and found to be high in histamine are:

• Eggplant (aubergine)
• Spinach
• Avocado is borderline at just over 20mg
• Fresh tomato & tomato ketchup is borderline at just over 20mg & chopped tomato is fine!

So as you can see, there are less than a handful of non-fermented plant foods which are high in histamine (though of course fermented plant foods like sauerkraut aren’t included and are known to be high in histamine).  I don’t know about you but this tiny list is a massive shock!  To think I’ve been missing out on loads of foods for no good reason for the past five years is heartbreaking.

This isn’t the full picture however.  The research paper suggests that it isn’t just histamine which may be causing a problem for HIT patients.  Other biogenic amines, such as putrescine, compete for DAO and the reason that patients report issues with foods low in histamine may be that they’re high in other amines.  We have no evidence this is true though – bare in mind it’s just a theory and might be totally wrong.

The biogenic amine putrescine is found in nearly all foods to some degree, so again we have no idea what a high level is, so I’m using 20mg/kg as my figure but it’s not based on anything.  The following is a list of ‘high’ putrescine foods – if you react to any of these, none of which are high in histamine, it might be you have an issue with putrescine instead:

• Green pepper
• Sweetcorn
• Tomato, fresh, concentrate & ketchup
• Peas (fresh & frozen)
• Soybeans, dried & sprouted (but not soya milk or tofu!)
• Banana
• Grapefruit, fresh (juice is borderline)
• Mandarin
• Orange
• Passion fruit
• Pear is borderline
• Papaya is borderline
• Pistachios
• Wheatgerm (but not bread or other wheat based products)
• Green beans
• Purple beans
• Broccoli was borderline in 1 study but fine in the others
• Courgette was borderline
• Cucumber was borderline in 1 study but fine in the others

I regularly eat several of the foods on this list, including bananas, passion fruit, pear, broccoli, courgette, green peppers, sweetcorn and peas and have no problems with them whatsoever.  However, you may have a totally different experience.

Tyramine, another amine, was found in some of the foods tested, though in very low levels.   So using pure guesswork and nothing else I’ve based my ‘high’ figure on foods which contain a level of tyramine of 5m/kg – it’s not based on anything though and could be way off the mark.  Foods with a ‘high’ level of tyramine include:

• Fresh tomato
• Avocado
• Plum
• Green beans are borderline

Bare in mind that tomatoes and avocado contain relatively high levels of histamine, so you may react to those due to their histamine content, but if you have a problem with plums or green beans it might be due to their tyramine content.

Cadaverine was found in some of the foods tested, though like Tyramine in very low levels.   So using pure guesswork and nothing else I’ve based my ‘high’ figure on foods which contain a level of cadaverine of 5m/kg.  These include:

• Spinach
• Soy milk was high in 1 study but fine in the other
• Tofu
• Pistachios
• Green peppers were borderline
• Banana was high in 1 study but undetectable in the others
• Grape was borderline
• Almonds were borderline
• Sunflower seeds were high in 1 study but undetctable in the other

The biggest question people new to low histamine diets asks is, “now I know what I can’t eat, but no-one tells me what I can eat!” and this new paper helps with this.  There is a long list of plant based foods which are low in all amines including:

• Lettuce
• Onion
• Red pepper
• Potato
• Apple, fresh & juice
• Grape
• Cherry
• Guava
• Kiwi
• Lemon
• Mango
• Peach
• Pineapple (fresh & juice)
• Strawberry
• Hazelnuts
• Barley
• White bread
• Wholemeal bread
• Corn-based cereal
• Oats
• Pasta
• Rice
• Asparagus
• Yellow beans
• Cabbage
• Cauliflower
• Carrots
• Celariac
• Chard

If you have symptoms after eating any of these foods it looks like it’s down to a problem not related to biogenic amines and therefore isn’t Histamine Intolerance.

There are some interesting foods on the ‘allowed’ list.  Bread contains yeast and yeast is banned from most low histamine foods lists, however from the research trawl I did for my Histamine in foods: the Evidence page, and from this research paper, baker’s yeast (ie the yeast used in bread) tested low for histamine, it was the yeast extract (a by-product of brewer’s yeast) found in marmite which was the problem.  Many low histamine food lists exclude nuts but most appear to be low in all amines so should be fine.  Soya beans are also excluded on all low histamine lists, yet tofu and soya milk tested low in all amines and soy beans tested low in histamine yet high in putrescine.  It’s the fruit which has shocked me the most though.  Berries, cherries, pears, plums and pineapple are all excluded from low histamine food lists yet all are low in histamine and most are low in all amines so I will be eating strawberries again before the week is out (I already eat blueberries and drink pear juice daily so knew I had no problem with them).

Although dairy foods weren’t looked at in this particular research paper milk, fresh cheeses like mozzarella (but not hard or blue cheeses!), butter, cream and yoghurt have all been found to be low in histamine, though I’m unsure of their other biogenic amine content – I’ll look into that when I’m not suffering from a sickening migraine, which I currently am   Most fresh meats have also tested low for histamine, but again I’m unsure of their other amine content.  So, all in all low histamine diets don’t need to be anywhere near as restrictive as they are which really is great news 🙂

In light of recent evidence I’m going to totally re-vamp the low histamine food list on my blog when I have the time, energy and brain power.  I haven’t been following the list faithfully for a long time and am managing my HIT symptoms really well, so for me the list here on my blog is way too restrictive.  However, as I say all the time, my blog reflects my experience and yours may be totally different.

The new research paper talks about cooking methods and the fact that boiling vegetables reduced their histamine content, sometimes dramatically.  So, if you’re having an issue eating raw veg you might want to try boiling it and eating it cooked instead.

The other thing to mention while I’m on about food reactions is that Mast Cell Activation Disorder (MCAD) and Histamine Intolerance (HIT) are two distinct and separate illnesses.  Patients with HIT only have a problem with amine-related foods, while people with MCAD can react to just about anything so trying to control MCAD symptoms by a low histamine diet alone is fruitless.  The two diseases can sometimes occur together as in my own case, but many people ‘just’ have HIT and most people with MCAD ‘just’ have MCAD, so  when I talk about low histamine diets I’m exclusively talking about controlling HIT.  If people with MCAD find eating low histamine helps some of their symptoms too that’s great but it’s much more complicated than just diet for mast cell diseases.  If you’ve been religiously following a low histamine diet for more than 6 months and are still reacting to foods, or are reacting to foods low in biogenic amines, or are reacting to other things in the environment like heat or cold, your period makes your reactions worse, stress or strong emotions like excitement make your reactions worse and/or your hair is falling out, I would imagine you have more than HIT going on and it’s much more likely you have a mast cell issue.