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.

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9 thoughts on “There are none so blind..

  1. Livvy

    Hey Jak,

    Really like your article here because I think sometimes we as a group can give ourselves a bad rep when we go shouting things as if they were facts to doctors and then they judge us and treat us accordingly… Then we wonder why they’re not so keen on trialling a new drug for a condition the NHS doesn’t recognise? And I have to say back in the early days when I first got my diagnosis of eds I was probably the same but now I agree we need to be more cautious and sensible about what we read about our illnesses online and be more scrutinising. I personally have anaphalyxis allergies to dairy, egg, soya, nut and wheat and that is why I avoid those, as well as many fruits that get cross pollination with birch or other things, like banana that is related to the latex family of which I’m also highly allergic so obviously avoid but I agree following lists blindly for histamine content is kinda daft. Why not just do your own elimination diet then try reintroduce stuff slowly. You learn if you can tolerate a bit of goats cheese that is mild compared to an aged block of cheddar! You don’t need a list someone else wrote to tell you that. It’s horrible avoiding foods, costs more and takes energy. It’s great to try and eat little bits and tolerate stuff I agree.

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  2. Glo

    When I was first diagnosed with mcad i cleared the cupboards and fridge of all the things on the histamine list. Didn’t leave me with much to eat. Over time I slowly started eating things that were prohibited. I have found that the less processing the better. Cheese makes me itch like crazy. Moderation is the key for allowing me to eat a better variety. I have started reading research reports and agree that they are all over the place and have no sound foundation. Especially since everyone reacts differently such as Jax can’t eat bananas but I can. I’ve never had an anaphylactic reaction so maybe I’m a bit more prone to experiment. I hope you discover that there are many more foods out there you can eat. I do have a harder time with food from restaurants so have a handful of places I will eat at. A little at a time is important. Remember Jax empty bucket theory which I find to be very true.

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  3. idiopathicmom

    I never comment but wanted to say that I have Chronic Idiopathic Urticaria and I am one of the few actually referencing the ‘right’ page 🙂 While my hives are idiopathic according to the doctors, I found your research to be super helpful when I was first trying to figure out why I was breaking out in hives and just wanted to say thank you!

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    1. Jak Post author

      So sorry to hear you have hives, but really glad you’ve taken the time to comment and have found my blog useful 🙂 I currently have half a dozen hives on my backside and, having just gotten out of a warm bath they’re itching me like crazy, so I do empathise! Jak x

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  4. Karen, The Walking Allergy

    The whole ‘histamine in food’ thing never made much sense to me…because I’ve never reacted to those foods. Moldy food (like a fine Stilton) I gave never been able to eat- I’m allergic to mold… Things like fermented tea beverages- yeah, I, not even going to try those. But plain yogurt is just fine- every three days. In fact, I have a fair number of foods that are ok if I only eat them every three days. What I can eat changes, whenever I have a bad flare or a rare calm moment, my list changes. I think the reason that people on low histamine diets do better is because it teaches them how to pay attention to what they are eating, and to how it makes them feel. I don’t know anybody who can only eat low histamine foods, and all of those foods. Everybody has ‘exceptions’. Arbitrarily cutting foods out of your diet is a very poor plan. Listening to your body, documenting it, and then finding patterns. That’s the key, IMHO.

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  5. d

    I agree with Karen. I have slowly been introducing foods back into my diet. I stay away from anything with preservatives in it and fermented or aged foods. I have been able to find a yogurt that I tolerate (a small amount 1/4 C every day) but I also do notice that there are days when I can react to it. It’s the bucket theory – what else have I been doing that has increased my histamine levels? Chemicals, across the board, make my reactions to everything worse so if I can manage that as best I can in this chemically-laden world, I find I can enjoy more foods. Like Karen I seem to do better with smaller amounts and a bit spaced out depending on my reaction to them. I do find though that for some I can increase the amounts and frequency until I can tolerate them daily. It’s a slow process but maybe I will get to a point where I can go out and choose something from the regular menu!

    I am definitely going to try milk chocolate! : ) Bread is hit or miss with me, but could be due to other ingredients, like honey, that my bakery uses (I am sensitive to salicylate). In terms of baker’s yeast, my dietitian told me that bread was fine, it was when yeast is used in a way that ferments something that you need to be wary of it.

    I think people feel so awful and it seems everything you eat makes you feel terrible that when you find a list, you hang onto it like a life preserver. It is difficult to maintain but could be considered the starting point – eliminate histamine foods and then add them back in in a systematic way. Once your body isn’t freaking out over everything, it’s much easier to tell what is really causing a reaction. Having said that, if you have other triggers (e.g. allergies, chemicals, pollens, etc.) you will need to identify and manage those too in order to really start to see a change.

    Finally, I do agree that the lists are disappointing in their lack of credible research. I know there are foods I cannot eat that others have no issue with. It’s so individualized that to have one “list’ is somewhat laughable. Take it with a huge truck of salt and listen to your own body.

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  6. Geraint

    Hi – a very informative piece. I’m a GP and did a quick google search about histamine intolerance as I’ve just heard about it this morning. We are sometimes vilified as not knowing about such things – I like to do a bit of research for these more novel syndromes and what I have read shows that there is no good evidence for the role of DAO as a dietary supplement or of having a measurable role in gut metabolism in people with potential Histamine intolerance. I always try to keep an open mind about these things. Most doctors will use evidence based medicine and are wary of unusual diagnoses that have not come from experienced specialists. I often see people who are at the end of their tether trying to battle with a gamut of symptoms that might not fit into a convenient ‘box’. I think this requires deeper though and an open mind on the side of both patient and doctor to come round to a good diagnosis or diagnoses. Testing serum everything or getting your drinking water tested or your magnetic field tested (I could go on…) is almost always a way of someone, somewhere extracting money from desperate people looking for hope. Modern medicine doesn’t have a test or pill or a dietary regimen (we are poorly trained in the latter) for everything but there is also plenty that we are yet to understand. This article is excellent in addressing these issues – thank you.

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    1. Jak Post author

      Hi Geraint

      Thanks for taking the time to comment. I’m afraid I have been guilty on occasion of blaming my GP for not knowing more, but this comes from decades of living with scary symptoms which no-one understands – it’s a frustrating situation for all concerned. I’m encouraged to know you try and research emerging and rare conditions and I think that’s all patients want, ie for Doctors to at least accept we are ill, even if they don’t understand the mechanism. I first had my ‘your symptoms are psychological’ diagnosis when I was just 13 years old, simply because no-one could find the cause for my pain (which turned out to be congenital spinal stenosis which required surgery). My anaphylaxis after taking any kind of drug, and in my later years eating any kind of food, was put down to ‘panic attacks’ and that misdiagnosis could have killed me. It’s a common complaint from people with rare diseases that Doctors are far too quick to dismiss symptoms as behavioural or psychiatric purely because they are unusual or not ‘textbook’ which leads to huge mistrust between Doctor and patient. Having said all that, I can totally see the situation from a Doctor’s perspective and it must be incredibly difficult to diagnose bizarre and apparently unconnected symptoms, especially as rare diseases like Ehlers-Danlos and Mastocytosis literally have a paragraph written about them in medical school.

      I was finally diagnosed with HIT by a mast cell Immunologist at St Mary’s in London. He did test my DAO levels, but will only use one specialist lab and agrees that better testing methods are needed. My test did point strongly towards HIT and without the test I would still have been in the dark as to what my anaphylaxis after eating was all about, so from a personal perspective testing was really important but not by just any old Tom, Dick or Laboratory. People with mast cell disease seem to be more predisposed to also having HIT, for reasons at yet unknown. My Immunologist doesn’t agree with DAO supplementation as he doesn’t know if a) it helps b) what the side effects are or c) what the long-term effects are. Eating a ‘low histamine diet’ stopped my symptoms within 4 months and my HIT (if not my mast cell disease) is largely under control. As a pesco vegetarian I think it was probably the large amounts of hard cheese I was eating, along with soya products, aubergienes, spinach and all the foods veggies are told are vital that were causing my anaphylactic reactions. It took a bit of working out, but substituting those for low histamine foods with equal nutritional value has been the key for me personally.

      I think mast cell disease and associated issues are going to emerge as a significant health problem in the coming years. I’ve certainly been amazed at the huge amount of visitors to my blog, which I thought no-one would read as my illnesses were classed as “rare”. Turns out not so rare after all!

      Jak

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