Liberate me from the liberators!

I rarely talk about food on my blog these days.  For the first 2 or 3 years it was all I could talk about because I’d spent 18 months battling severe reactions after eating, not to mention after any kind of medication, and honestly thought I’d die so, naturally, the topic was all-consuming.  But my Histamine Intolerance and Mast Cell Activation Syndrome are, for the most part, under control now and have been for at least a couple of years so I’m happy to not have to think about every single thing I put in my mouth any more and the relief is HUGE.

Now and again, some lovely person out there in the Universe will leave some catty comment here on my site.  Something like “you’re talking shit” or “this site is a joke” which is hurtful considering how ill I am and the effort which has gone in to 6 years of writing twice weekly posts, not to mention the thousands of hours that have gone into research, putting together information, links and photographs, or all the recipes I’ve made available here for free, but not everyone in the world is nice or has manners so you just have to take it on the chin.  A couple of weeks ago, one of these kind people left a message on one of my histamine-related food pages to the effect that the information was out of date and I might like to sort that out.  I was taken aback, as I’d only revisited the page in January this year and hadn’t heard on the grapevine of any significant new information on histamine in food lately (or ever), so I asked the poster to please point me in the direction of said new information so that I could share it with all my followers.   She didn’t reply.  They rarely do when asked to provide proof to back up their claims.

I had some free time today and, despite the most god awful thumping bloody headache, I decided to do some digging to see if I could find any new information on histamine in foods.  I failed miserably, but I did find an abundance of low histamine food lists and every single one had a big list of “histamine liberators”, ie those foods not actually high in histamine themselves but capable of forcing mast cells to release histamine.  Things like egg whites, strawberries, ‘additives’ (unspecified), pineapple, peanuts, fish, pork, liquorice, spices (again unspecified), tomatoes and of course citrus fruits.  Seriously?  No, really.  Seriously?!  And then people have the gall to say that my painstakingly researched information on histamine in food is out of date!

I spent nearly a year researching histamine in foods and could find zero evidence for any food “liberating” histamine from mast cells.  If you don’t believe me, Google til your fingers bleed.  There is no such thing.

Hardly any of the low histamine foods lists, even really popular ones like SIGHI, reference the research on which they base their information.  Most freely admit it’s gathered from patients,  which is about as much use as a chocolate fireguard.  There is a reason we have laboratory tests and double-blind randomized controlled trials and it’s so there is a level playing field, all the participants have exactly the same disease and no other disease (like fructose intolerance, or coeliac disease, or an issue with nightshades), and the resulting information is accurate.

So where has this myth that egg whites, citrus fruits or strawberries liberate histamine from mast cells come from?  It took me ages to work that little puzzle out and eventually I realized that where research was cited on a low histamine food list it usually came from a single source: a paper called ‘Histamine and histamine intolerance’ by Laura Maintz and Natalija Novak in 2007 which was published in the American Journal of Clinical Nutrition, and their information came from various sources cited at the end of their paper.  I followed the trail and discovered that the myth about egg whites came from ‘research’ (and I use the term loosely) by Schachter and Talesnik in 1952 (!) that egg white releases histamine in non-sensitised animals when injected intravenously.    A 64 year old single animal research study which didn’t even involve the animals actually eating anything is the basis for everyone excluding egg white on low histamine diets – jaw dropping isn’t it?   And the myth about strawberries liberating histamine came from unpublished data by Schachter in the 1950s but the paper is so old and obscure no-one has actually been able to obtain a copy to see what it actually says! In the Jul-Aug 2005 edition of the Netherlands Journal of Medicine is a paper entitled ‘Mastocytosis and adverse reactions to biogenic amines and histamine-releasing foods: what is the evidence?’ in which the authors conclude “We could not find any study on histamine-releasing effects of most of the foods suggested of having histamine-releasing capacities.”  I rest my case.

Everyone is a lot more savvy and clued up on histamine these days and there are now dozens of sites giving information on low histamine diets………….and they are all, without exception, wrong.  I simply can’t understand why these myths linger or why sites that really should know better perpetuate them.

Most of the people who write low histamine food lists are genuinely trying to be helpful and offer guidance to patients suffering from HIT and MCAS and it is nice to hear about other patients’ experiences of their safe, and not so safe, foods but it’s merely anecdotal and you simply can’t treat this kind of information as fact.  For example, buckwheat is listed on many lists as a safe food low in histamine, but I simply can’t tolerate it.  The truth is no-one has ever tested buckwheat for its histamine content as far as I’m aware and I have no clue where the testing figures or research information is that says it’s ‘safe’ for someone with HIT or MCAS to eat.

I could be wrong, of course.  There could be exciting new and accurate information on the histamine content of foods out there which I know nothing about and if so I hope one of you, my lovely readers, will tell me all about it. I’d like nothing more than to know which foods are safe to eat for someone with raging HIT and delinquent mast cells and which foods aren’t, but I suspect I’ll still be guessing by Christmas…………2030!

 

17 thoughts on “Liberate me from the liberators!

  1. Glo

    Hi! I just love all the diets people try. So many they can’t all be listed here. When I was first diagnosed I got the food list. Gave away lots of food and wasn’t left with many choices. It was through your blog that I learned there are so many variables in who can consume what. Have slowly added back most foods. Unfortunately I love cheese which makes me itch like mad in largish quantities. It’s more about limits than the food most of the time. The biggest problems for me seem to be caused by processed food. No problem. Makes for a healthier diet. 😉. I appreciate all the research you do. Thank you.

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    1. Jak Post author

      I’m the same Glo. I absolutely *love* hard cheese like cheddar and I can eat it now and again as a treat but it’s actually one of the foods proven to be high in histamine so it’s sadly not something I can eat regularly x

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  2. d

    Thanks Jak for doing the research and clarifying information about histamine-releasing foods (or rather, that there aren’t any). This has come up before: The lists are a place to start but they are by no means the same for every person. I have the same intolerance to buckwheat, also bulgur and spelt for some reason. I can eat other forms of wheat but no spelt…. who knows why? I’m sure there’s a reason that has yet to be discovered. In the meantime I have my main list, my borderline list and my definitely no list of foods. Depending on whatever else is going on in my day dictates whether the borderline foods make it into my diet.

    Also I very much appreciate your recipes. It gives me ideas, as well as makes me think about what I could possibly try to add back into my diet. Speaking of recipes I have started making quick sauces using either tahini or peanut butter. Sometimes I add yogurt if I want it to be more creamy like a salad dressing, most times I just mix the tahini or PB with some garlic and salt and add water to make it the consistency I want. It helps too if you let it sit for about 10-15 minutes to let the flavours blend. For a sweet/savoury sometimes I will add some honey to the tahini.

    Thanks for all you do. I am sure there are far more people that appreciate your information than there are naysayers out there.

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  3. Sarah

    My pet hate is people sitting behind the safety of their screens taping out spiteful comments. I tackle them head on, on Twitter, which makes them look even more stupid. If they’ve really vile, they are usually so self obsessed they stick their photo up, which I enlarge, screenshot and put it back on in a reply as a mirror to their behaviour. They don’t seem to like that!
    With regards to food, I stupidly bought a spaghetti bolognese yesterday because it is reduced. I subsequently slept for 4 hours after. I have the same with bread. Have you heard of people having uncontrollable sleep after eating?
    Sarah x

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    1. init72

      Im interested in this reply too – my 13 year old is undergoing some tests as she’s permanently exhausted and has awful periods etc (I’m HED’s so she’s got all the signs – we are not even at MCAS yet but it’s on my list) and I am trying to look at her diet but it is SO difficult at this age – she’s not a fussy eater but definitely has a few foods she doesn’t like, she eats plenty of veg and salad, a few fruits (we eat a low carb high fat type food diet for me and the other half at home – he needed to lose weight – almost 3 stone now!!) she eats some of this and has a treat now and then but knows about portion control, and what a treat is, rarely has take aways etc and is starting to cook herself but has to take a daily anti-histamine the past two years as she just sneezes non-stop and it makes her miserable. xx

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      1. init72

        Also – in at the start of Spring and Autumn I used to have to put her on Gluten Free diet for a month as she reacted so badly to the changes of the season – that’s thankfully stopped it seems!!

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      2. Sarah

        Has she had the allergy skin test? They look at food and environmental factors
        I came out in hives with the 9 rare things such as plastic and water (makes my skin feel like it’s burning and drinking plain water makes it feel like I’m swallowed razor blades) I also come out in hives with cardboard and dust. I’m also allergic to trees and sawdust. My tree hugging days are over 😉
        You could do a patch test yourself especially with sawdust and dust. Wrap some on the forearm under a bandage. Mine come up straight away. Plastic too, having a plastic bag on my forearm brings me out in hives and plastic boxes.
        The dust issue is making me think I really need to get rid of my carpets
        Fruit wise, I was told I have a reaction to the skins of fruit. It’s not an anaphylactic reaction but a hayfever reaction which sounds similar with the sneezing. Best to get her checked by a professional. I was told to boil the fruit too
        Also, my hayfever is brought on by tree pollen which starts earlier than grass pollen so Feb/March time. I hope that helps

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        1. init72

          No tests yet – GP’s are hard enough to get to understand EDS etc even though I have been diagnosed but it’s on the list – I am sure Dust is one of hers and we have no carpets but of course that doesn’t mean there is no dust but it’s hard to control, we also have a cat (short haired but still…) and she definitely reacts to tree pollen as do I (horse chestnut trees get me in the park!!) and we are both irritated if we sit on grass directly so need a towel or blanket or something. The fruit thing – it’s funny you mention that about the skins – the fruits she doesn’t want to eat have all got skins!!! (Banana, Oranges, Peaches, Nectarines etc) What she will have are Raspberry, Strawberry, Grapes, Kiwi and Melon (all in small amounts which suits the low carb diet anyway) and she HATES dried fruits of any sorts! Thanks for the tips I will look into it a little more and try some stuff out over the Xmas hols xx

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        2. Jak Post author

          Just a word of caution about doing DIY patch testing. In hospital, they have eip pens etc. at the ready in case you have anaphylaxis to something so may be it’s a bit risky to test at home without any medical backup.

          I had no idea I’d test positive to dogs on skin prick testing! I have Bertie and had no clue I was truly allergic to dog dander/saliva. It explains why I wanted to rip my skin off after I’d clipped him though LOL, so now he’s done at a grooming parlour 😉

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          1. Sarah

            I wasn’t saying prick the skin, just placing dust on it and seeing if it came up in a rash. I wouldn’t try any of the others such as fruit myself
            Good point Jak, Sorry for the confusion

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      3. Jak Post author

        My periods were dreadful from day one. Turns out I had endometriosis, which isn’t looked for in younger women (makes me furious!). Also, of course, if her periods are heavy it’s more than likely she has low ferritin stores. Dont’ let them just check her for anaemia – you can have normal red blood cells but low ferritin (iron) stores, and as I know from very recent experience that can make you absolutely and utterly exhausted :-/ Low iron is very common in teenage girls and it’s infuriating that doctors don’t routinely check for it.

        I need to loose more than a few pounds at the moment, but there’s no way I could go on a low carb diet. I’ve tried it and my energy levels were non existent and I felt as weak as a kitten 😦 We’re all different and our bodies need different things.

        I used to sneeze every day of my life. Going low histamine has reduced this by about 80%! x

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        1. init72

          We both have lightish periods for about 3 days max – so Dysmenorrhea is the likely culprit here – I was put on the Pill at 14 for it (it helped instantly) but I wish it could have been looked into more like it can now so I hadn’t had to flood my system with more hormones so early on…so diet, exercise and like you suggest Iron stores (which have come back ok) are all being looked into xxx

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          1. Jak Post author

            I’ve only ever had light, 3 day periods too! Still turned out to be endometriosis and adenomyosis. But because my periods weren’t heavy they didn’t even start looking for endo until I was in my 30s and by then it was everywhere 😦 x

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    2. Jak Post author

      Mast cell medidators released during a reaction can absolutely affect the sleep/wake cycle as they affect chemicals in the brain such as seratonin and dopamine. For many people histamine produces insomnia, which was certainly the case for me. I had raging insomnia for 25 years but since going low histamine my sleep has improved substantially. It may be that your reaction is involving mediators other than histamine (there are dozens of them) which is making you sleepy instead.

      It’s unusual for a reaction to involve nothing else but feeling sleepy though – there would normally be other symptoms, such as nausea, vomiting, itching, flushing, palpitations, muscle spasms, swelling etc. Maybe you have insulin resistance and a problem with carbs if pasta and bread make you want to sleep? I’m not a doctor so am just chucking that out there x

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