Tag Archives: evidence

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.

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There are none so blind..

…as those who don’t wish to see.

Y’know as a kid when you didn’t want to hear something you’d stick your fingers in your ears and go “la la la la, can’t hear you!”  I’m starting to think that’s the way most people feel about histamine.  They only hear the bits they want to hear and ignore everything else.

To me, the most important page on my entire blog is the one about the evidence of Histamine in foods, yet it receives the least visitors and has no comments.  Not a single one.   The article proves that there is basically zero evidence on which to base any of the current Low Histamine Food lists and that the histamine content in food is just a guess, and oftentimes not even an educated guess.  It’s very important to know this, particularly if you have HIT and could go into anaphylaxis if you eat too much histamine-rich food.  But it seems no-one cares.  No-one is shocked at the lack of evidence for histamine in food.  And that shocks me more than anything!

In comparison, The Low Histamine Food list page has the most traffic, even though I’ve proven it’s not based on fact or much of anything else.  It seems no-one’s bothered how accurate, or not, the low histamine food lists online are despite the fact their lives could depend on it.

We see what we want to see, especially when we’re desperate.  We see a list of research references at the end of an article and think to ourselves “oh well, it must be based on fact then”, even though we don’t bother to read the research references to find out how old they are, how big the study was, if it was replicated, if it appeared in a peer review journal and was scrutinized.  In other words, whether the research the article is based on is just a theory or whether it’s fact.

All the low histamine diets online tell you should avoid egg white.  Did you know this is based on one single miniscule study done in the 1950s on mice which was never published or scrutinized?   Would you let someone operate on your heart, based on a single research study on mice done just after the Second World War?  No, I thought not.

No food is innately high in histamine.  Histamine is produced during the aging process (eg mature cheese), the production process (eg. yoghurt, vinegar) or during storage and transportation.  The latter is very important.  A banana straight off the tree will be zero histamine.  A month old, brown, soggy banana will be high histamine.  Our food storage and transportation has come on leaps and bounds in the last 60 years.  We now use refridgerated lorries and food often appears in supermarkets within days of being picked or produced which impacts its histamine level.

I wish if nothing else people would take away from my blog the fact that there is no such thing as a Low Histamine Food list.  They don’t exist.  It’s pointless Googling for whether or not Pak Choi is low or high in histamine, cos no-one knows.  No-one knows whether the blackberries I pick off the bush in my garden contain histamine, or are higher in histamine than the blackberries shipped in from Israel for sale in the supermarket.

No-one knows how food affects DAO in the gut.  We can’t even accurately measure DAO in the gut, so how on earth would we know if any food increases or decreases it?  No-one knows if particular foods (eg. lemons) releases histamine stored in mast cells.  And if you read differently online the person or company saying otherwise is either lying, guessing or simply hasn’t done their homework properly.

I know what I’m saying is deeply unpopular.  I know sick people don’t want to hear it.  But we should all know the facts about this stuff.  It’s important.  People following low histamine diets are cutting out all sorts of foods for absolutely no good reason.  Aren’t our lives hard enough without that?  If you don’t believe my research, do your own.  Try and find evidence for the histamine content in foods – real evidence.  Properly conducted up-to-date research published in medical or food Journals.  And you’ll find it’s virtually non-existent.  Just because there’s an app listing foods high in histamine doesn’t mean it’s accurate for heaven’s sake!  And any app which lists foods which liberate histamine from mast cells, or which increases or decreases DAO is wrong, wrong wrong!  Ask the people who produce the app to provide you with the evidence on which they base their information.

Knowing all this, I’ve been re-introducing some foods back into my life which I’ve avoided for the past 3 years.  There is no evidence for baker’s yeast being high in histamine, and I really miss proper bread especially when I’m out and about, so I’ve been eating it in small amounts for a few months now.  I still have my yeast-free bread when at home because I like it, it’s organic and doesn’t contain any of the crap of supermarket bread, however it’s only nice toasted so when out of the house I eat ‘normal’ bread in cafes and for my sanis.  I’m happy to report no effects on my symptoms whatsoever.  None.  Yayyy 🙂

I’ve also re-introduced milk chocolate.  I’m careful to use brands without soya of any kind (one of the only foods for which there is proper evidence of high histamine content) and am again happy to report that it has not affected me one iota.  My hormones are ever so grateful – having a menstrual period without chocolate was sheer hell 😉

There is not a shred of evidence for the histamine content of fruit or how fruit affects histamine in the body.  Not lemons, not oranges, not strawberries.  No research has been done on it.  So over the summer I intend to try various fruits I’ve been avoiding, one by one, and see how it goes.  Bananas are not purported to be high in histamine, yet they make me brain fogged, so it may be I react badly to some fruits for reasons no-one understands and which has nothing to do with histamine.  Or bananas may be high in histamine.  No-one knows, as they’ve not been tested!

Please, think about what you read online.  Just because 100 people are saying one thing, and 1 person is saying the opposite, doesn’t mean the 1 person is wrong.  Do your homework.  Look at the evidence and make informed choices.

Which List Should I Use?

In light of my recently gathered information, or lack thereof, on which foods affect histamine I suppose many of you are wondering which low histamine food list to use, if any.  I have no idea is the simple answer.  I don’t give advice here on my blog because I’m in no position to – I’m just a sick girl floundering around in the dark along with the rest of you.

There is information on the most popular low histamine food lists on Alison Vickery’s website so thanks to her for putting that information together which saves me a massive job 🙂  We’ll have to agree to disagree though that any of the lists are “credible”.

I follow Dr Joneja’s list (which is the one here on my website) because it helps control some of my Histamine Intolerance symptoms some of the time.  I also have Mast Cell Disease though and the diet doesn’t help that.  There is no source data for Dr Joneja’s list, however, so I have no clue on what she bases the information or how accurate it is.

Another popular List is by SIGHI, the Swiss interest Group on Histamine Intolerance.  This List is compiled from “various sources” none of which are given, so again there is no way of knowing what information the food choices are based on or how accurate the testing of these foods was.  The List also incorporates “the experience of members” which is largely irrelevant.  I have no idea whether SIGHI’s members have HIT, MCAD or any number of other diseases, what medication they are on which could affect the foods they eat or whether they’ve been tested for actual food allergies.  One thing I’ve learned from writing my blog is that we all have vastly different reactions to foods: I tolerate wheat, you may not.  I tolerate legumes, you may not.  Apples are low in histamine and they make my lips tingle, because I have an allergy to Birch pollen and apples are related.  Whether or not you react to a particular food could be due to several factors and have absolutely nothing to do with the food’s histamine content.  The reason we have double-blind randomized controlled research trials is to eliminate all these biases and only compare ‘like for like’ results.

Another List mentioned on Alison’s page is the Failsafe Diet from the Royal Prince Alfred Hospital.  You have to buy this list so I don’t have a copy – if anyone else has a copy please let me know if the testing methods on which they base their list is included.

Low Histamine Food Apps don’t appear to be available on the Windows platform, which is the type of mobile phone I have, and you have to buy them, so based on that I don’t have access to them.  At least one of the Apps apparently lists the research sources for their information, so kudos to the company for that.  However, has anyone actually read the research?  How old is it?  How many studies is it based on? Is it just a regurgitation of the research I found online, because if it is it’s next to useless.  Any App which lists food that “liberate histamine” or “block DAO” are useless IMHO, because I found that absolutely no research has been carried out in either of these two areas.

I must sound like I’m totally anti low-histamine food lists which isn’t true.  Dr Joneja’s list literally saved my life.  I was eating huge amounts of hard cheese like Cheddar & Parmesan, which research shows is high in histamine.  Being vegetarian I was also eating loads of spinach and aubergines which research shows are moderate in histamine, and fermented soy products like soy sauce which research shows is high in histamine.  And like everyone else I bought all my sauces, mayo etc.  which contain massive amounts of malted vinegar and soya products as preservatives.  Replacing all these items helped my symptoms enormously.

I have no idea if the orange juice I drank every day contributed to my histamine problems, because I couldn’t find any research which has tested citrus fruits – huge shock there, as they are demonized in the low histamine food world.  Ditto for tomatoes and strawberries – no evidence there either because no-one has actually tested them that I could find.

I’ve found that bananas, buckwheat and cashew nuts make my brain fog worse, and apples make my mouth tingly, despite none of these foods being touted as high in histamine (I don’t know if they are or not as I could find no research on them –  I just know my mast cells obviously don’t like them much).  As I said earlier, we’re all going to have things our mast cells react to which are individual to us and nothing to do with the food’s histamine content.

I regularly eat chocolate biscuits and they give me no symptoms whatsoever.  I could find no research which had tested cocoa for its histamine content.  Just because something is “fermented” I discovered it doesn’t automatically make it high in histamine.  One study found Kefir, a fermented milk drink, to be very low in histamine, along with yoghurt another fermented product!

To be honest, I’d hoped that by delving in to the murky world of histamine in food I’d come out the other side much more informed on what I should, and should not, be eating but I’m actually more confused than ever.  As a result of my research though I am going to try re-introducing foods one at a time which I haven’t eaten in nearly 3 years and just see what happens.  The more varied and balanced a diet is the better it is for you and the more fun it is to eat!

The Truth About Histamine in Foods

As regular readers know, for several weeks (it feels like forever!) I’ve been trying to work out the accuracy of the Low Histamine Food Lists found online.  What I discovered was really shocking.  The fact is, there is virtually no reliable data on which to base any kind of Amine-related food list and it appears that most lists are based on hunches, speculation or research so old the authors are dead.  It may turn out that these hunches are absolutely accurate: nutmeg really is high in histamine and so are pumpkins.  Or it might turn out that we’ve all been avoiding these foods for absolutely no good reason.

The whole subject of histamine is really quite complex.  What started out as a single article turned into an entirely new section of my blog called ‘Low Histamine Food Info’ which contains several new pages – just hover over the tab in the menu and you will see the pages listed.

If you’re feeling lazy and want direct links to the new pages here you go:

Please Read This First!

What is Histamine?

Diet & Histamine Intolerance

Diet & Mast Cell Disease

Histamine & Food: The Evidence

Histamine & Drugs (which is still being written, bear with me I’ll let you know when it’s available)

These pages are then followed by the existing Low Histamine Food List and Low Histamine Shopping List pages which remain largely unchanged.

I stress that the information in this new section isn’t exhaustive – there are a couple of companies which test for amines in food which I don’t have access to (although I question their accuracy) so I’ve only looked at free research which can be found online.  It is also only a personal interpretation of the data and I don’t claim to be any kind of expert at deciphering statistical analysis.  I’m just a sick girl, lying in my bed going round in circles trying to work out what any of this stuff means 😉

So, my friends, knock yourself out and have a read.  I’ll be interested to hear what you think and if you can add anything to the information please do let me know.

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!