The Truth About Food Lists

The majority of people who visit my Blog do so because they’re looking for information on Low Histamine foods.  When we’re struggling with awful symptoms we just want to find a solution, some way of stopping the hell that eating has become.  We want an ‘expert’ to tell us what to do, what to eat, what not to eat, and how to ease our suffering.  I know I did – that’s the whole reason I started on my low histamine journey. But there’s one humongous obstacle sitting in the way, and I’m going to spell it out in big letters:

THERE IS NO DEFINITIVE LOW HISTAMINE FOOD LIST

I know you don’t want to hear this and I don’t want to be writing it.  But it is the truth.

Mast cell activation disorder (MCAD), and histamine intolerance (HIT), are very new areas of medicine on which hardly any research has been done.   No-one has tested all our food for its histamine content.  Let me repeat that.  No-one has tested all our food for its histamine content.  There have been some small studies done on certain food groups, and there have been questionnaires undertaken by certain groups and charities involved in the histamine field on how their members have reacted to various foods, but a comprehensive list of low histamine foods doesn’t exist.  Even less research exists on “histamine liberators” and “DAO reducers”, ie those foods which don’t contain histamine themselves but which are purported to either liberate histamine already in the body, or reduce the amount of DAO in our guts which deals with the histamine rich foods that we eat.

This is the reason that many of the diets online are so different to each other.  There is so little to base the diets on that much of it is pure guesswork.  We all react differently to foods: a trigger for one person isn’t a trigger for another person.  The way our food is picked, stored and used also varies widely: if you pick a banana straight off a tree in the Caribbean and eat it there will be no histamine, but if it’s stored in hot weather for 2 days, then put on a ship for a week to reach England, then sits at the Queyside waiting to be put on a lorry, then the lorry takes 2 days to get it to the supermarket, then it sits for another 2 days until it’s put on the shelf, then I buy it and take it home in my car in 25C heat, then it sits in my kitchen fruit bowl for 3 days before I eat it…………..you can see why it would be a histamine timebomb.  “Fermented foods” are widely touted as being high in histamine, but who can say for certain that Feta cheese made by hand from local milk in Italy will have the same histamine content as Feta cheese made in a factory by machine in America with milk from New Zealand sheep?  Is apple cider vinegar more or less histamine generating than malt vinegar?  I don’t have the answers to these questions and neither does anyone else.

We must exercise caution.  Don’t believe everything you read online, unless you’re reading it on a Government, Department of Health, or Food & Drink Administration (or other official) website.  Please remember that any Tom, Dick or Harry can put stuff online – it doesn’t make it fact.  Use your judgement: is the Low Histamine Food List you’re looking at based on research and if so is the link to the research available?  If it’s not, ask where the information has come from, on what is the information based?  But most of all don’t accept any Low Histamine Diet (and that includes the one here on my Blog) as the be all and end all, because a definitive Low Histamine Diet doesn’t exist.  Instead use the low histamine food lists as a guide, a starting point, and tailor a list which suits you personally.  It’s the only way to go.

At any one time people with histamine issues will react differently to the same food.  There are times I will go out for a meal and put tomato ketchup on my chips with no problems whatsoever.  That’s because I’m in a good patch and I know my histamine levels are relatively low.  But last week when I was offered tomato ketchup to go on my chips I refused, because I was already having a mast cell reaction to an insect bite, had an outbreak of hives and it’s high pollen season here in England and I’m a little bit hay-feverish, so I’m under no illusion that my histamine bucket is high to overflowing – adding to it with a food which I know is high in histamine (being both processed and made of vinegar and tomatoes) would not be wise.  I use lemon juice in some of my recipes because I seriously don’t think a squirt of lemon now and again is going to give me anaphylaxis or make a huge difference to my symptoms.  If, however, I ate foods containing large amounts of lemon juice twice a day for the next 2 weeks, it would be a different story.  For me personally (and I can only ever speak from my own experience and have never claimed to be any kind of expert) these “cheats” are fine and don’t cause me any problems.  If, however, they cause you problems then don’t eat them – simples!

My Blog site doesn’t contain all the answers to your histamine questions.  But neither does anyone else’s.  That’s because research on histamine and mast cell activation is in its infancy – the information simply isn’t available.  All we can do is share the limited information we currently have, our experiences, what works for us and what doesn’t and hopefully learn along the way.

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22 thoughts on “The Truth About Food Lists

  1. Gemma

    Hi Jak,

    I just wanted to make contact with you as was reading your blog entry about your mast cell appointment with interest. I’m in Preston, have M.E., hypermobility & Pots and am starting on the journey of looking at Ehlers Danlos and mast cell problems. As I live in Preston it would obviously make sense to see the consultant that is here but do you believe that it really wasn’t worth it? I’ve had about as much as I can tolerate of doctors who don’t listen (haven’t we all?!?) so I wouldn’t want to see him if it was a bad experience. Would appreciate hearing your thoughts. You can pm me if you want on my email address. Thanks

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  2. bertieandme Post author

    Hi Gemma

    Sorry you’ve also got this triangle of diseases – it’s much more common than is realised.

    I’ll email you about what I thought about my apt at Preston, that way I can’t be sued for liable! Hopefully it’ll be tonight, but if I don’t get chance definitely tomorrow.

    Jak x

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  3. Hedwigia

    What a ray of sunshine your blog is! I’ve just started reading around on low histamine diets (for eczema and migraines) and had started to wonder whether it was all just internet-folklore-babble as there was so much contradictory information, all given very emphatically but with no obvious scientific backup, just copies of copies of suggestions. However, I did eventually find one paper that actually gives figures for ranges of histamine levels in some foods – http://ajcn.nutrition.org/content/85/5/1185.full.pdf+html. Unsurprisingly the ranges are huge! But it did make me think that I really need to try avoiding at least the worst offenders for a while.

    I love the way that you write and debunk things, and make them accessible. The ‘bucket’ theory of histamine build-up makes so much sense.

    I was also very interested in the EDS information, not for myself, but because I work in a primary school and have often come across children with hyper mobile joints – I had no idea there were so many potential repercussions. (I teach children who are struggling with reading and writing, so particularly notice those who have difficulty holding a pencil because of over-bendy fingers.)

    I also learnt a lot about mast cells. (I’m now wondering about the strange joint swellings that I had in my teens – I was signed off PE for a couple of years, but nobody ever came up with any explanation of why my knees kept swelling up so painfully – and then they just stopped doing it, luckily for me).

    Thank you for sharing so much useful information so level-headedly. It must have taken many hours of work.

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    1. bertieandme Post author

      Thanks so much for such a lovely comment – makes all the hard work worthwhile 🙂

      I’ve had many comments from people on my blog saying my Histamine food list is wrong, but like you say they can’t back it up with facts – yet they’re adamant that the list they follow is the definitive list and don’t want to hear that no definitive list exists!

      You’re doing exactly the right thing in cutting out the worst offenders (which is also what I did to a large extent initially) and seeing if it makes a difference. I then cut out foods that various lists disagreed on, like bananas or cottage cheese, for a week and noted my reaction – no difference and the food was added back, but if I had symptoms the food was avoided. It’s all so personal and because histamine content differs so much in the way food is picked and stored it’s going to vary widely.

      It’s so refreshing to hear that someone who works in education recognizes hypermobility in children 🙂 Just a word of caution though: hypermobility in children is common, isn’t a sign of disease and doesn’t cause any problems at all. It’s only if there are other symptoms, or chronic pain, that Joint Hypermobility Syndrome/Ehlers Danlos-Syndrome should be considered. All the red flags were there for me from early childhood, and my “double jointedness” was commented on often, yet a disease was never considered – it’s great that information on EDS is finally filtering through and hopefully children with EDS will be picked up much sooner.

      Good luck with the diet – it’s not easy! Jak x

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  4. sharon

    I am so grateful to find someone who is going through the anaphylactic shock like I am. I don’t feel so alone. This has been terrifying. I find myself angry. You touched on things I did not think of. One problem I have is that I am not allergic to peanuts but it acts like a peanut allergy. I go from Celiac to Histamine Intolerance to Food Allergies. I feel like a bouncing ball. No cookbook works. I am learning little pieces at a time. Thanks for another piece 🙂

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    1. bertieandme Post author

      Hi Sharon

      Sorry to hear you’re struggling to find answers to such a frightening symptom. If you had Coeliac Disease it would show up on a biopsy and/or blood test, so if you’ve had both of those done and it’s come back negative you can discount it.

      Food allergies show up on skin prick testing, so again if you’ve had this done and it’s negative you can rule out food allergies.

      Like you say though, you can react to foods but not be allergic, and that’s where mast cell activation (either Mastocytosis or MCAD) tends to come in. Mastocytosis is fairly easy to diagnose – you need to have a tryptase blood test done (usually when symptomatic). MCAD sadly is harder to diagnose and most of us struggle as it’s just not widely known about amongst the medical profession. You need to find an MCAD knowledgeable doctor to have this looked into if you suspect it’s an issue.

      Good luck
      Jak x

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  5. quianna

    Thanks for your blog. Im trying to determine if my two year old son is histamine intolerant or not. We went on the GAPS diet two months ago for eczema and digestion issues with no improvements at all. As a matter of fact things are getting worse and worse. 20 days in he broke out in full body hives when I hadn’t changed anything in days. After three days and some benedryl his hives were gone and his eczema looked so much better. The next day his eczema took a turn for the worse. His eczema is spreading and its really itchy, he has had diarrhea for the last four days and his sleep is not good. I have to go back to work on Monday otherwise I would start a low histamine diet to test it out. We have some genetic testing that should be back in a few weeks but I’m just not sure where to go from here. Do you have any suggestions? Thanks in advance.

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    1. bertieandme Post author

      Really sorry to hear your son is struggling so much – must be heartbreaking as a Mum 😦 I’m just a patient, not any kind of expert, so can only really go on my own knowledge and experience. I don’t know much about GAPS, but from the little I’ve read it uses lots of seafood and fish, plus fermented foods like kefir. Both seafood and fermented foods are very high in histamine, so if your son *does* have a histamine problem I’m not surprised GAPS has made him worse 😦

      Has your son’s tryptase level been tested? This is a simple bood test which rules out a mast cell disease called Mastocytosis. Cutaneous Mastocytosis is more likely to present in very young children than Mast Cell Activation Syndrome (which is what I have). Definitely something which can be easily checked if you’ve not already had it done.

      It’s good he’s responding to antihistamines. I’d absolutely try a strict low histamine diet. It’s hard work and time consuming, but if histamine is an issue you should see some benefits within 3 months.

      There is a family called the Blackdens whose small son had awful mast cell issues – they have a great Facebook page here https://www.facebook.com/blackdenfamily?fref=ts with tons of info. I have no experience with children, so you might want to ask on their page for further help.

      Jak x

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  6. Mona

    Hi Jak, thank you very much for your informative blog. It is true no research has been done. I was told,( not diagnosed based on any investigation), that most of my systemic symptoms are because of: 1.Excessive production of histamine.
    2.Lack of DAO,which controls and maintains the histamine level to normal.

    I have tried to find the low histamine foods but I am unable to get evidence based food list. It requires scientific research.

    If any one finds the food list please let us all know.

    Thank you all for your useful comments.

    Mona (London.UK)

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  7. Anna

    Dear Jak, as a lifeling chronic asthmatic, I was a guinea pig for many medications – they even sent me to a psychiatrist for treatment. While still a child I tried refusing medication which made me feel worse, but it took three decades to gain enough authority to make it stick. It has now been clinically established through a hospital based elimination diet over several months that I have both allergies and intolerances to food; some of the intolerances are long term side effects of theophylline ingestion. Scarily, it turns out that I am even allergic to some antihistamines. I would like to commend you on your honest and sensible approach to these issues and for increasing awareness of the complexities of the dietary balancing act. The dangerous ignorance prevalent within the research fraternity, who are often funded by bodies with agendas, results in misinformation published and promoted by slogans broadcast and repeated as truisms.

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  8. Rebecca

    I know what you mean bout to much in the bucket, I havent been tested for mast cell disorder, but I feel it’s me to te, but doctors won’t test me for it
    Finding each day a struggle sometimes . Good to here I’m not the only one. I get stomach rashes daily, fatigued , lumps under my arm is a new one and spots in the eyes everyday Bec Wilson nsw australia

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    1. Jak Post author

      Hiya Bec

      Really sorry to hear doctors won’t investigate – it’s so common sadly and diagnosis is something most of us have really had to battle for.

      Jak x

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      1. Rebecca

        Thanks jak, what kind of blood test can they do. My platelets are always running low lately and the doctor doesn’t really know what is going on. I’m trying to stick to the low histamine way but the healing way, from the histamine chef I found on facebook, s a good read if you haven’t already read it.
        Thanks bec

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        1. Jak Post author

          The list of tests which should be carried out are listed on this page Bec https://mastcellblog.wordpress.com/mastcellguide/ I don’t know which, if any, of these tests are available in Australia. It’s *very* important to find an MCAD specialist because the tests have to be carried out in very specific ways otherwise the results are useless. We only have one speciliast in the whole of the UK, which shows how little is currently known about MCAD 😦 You could try looking for consultants who treat Mastocytosis and then ask if they also recognize MCAD or ask on the Inspire Rare Diseases forum if anyone knows of MCAD specialists in Australia https://www.inspire.com/groups/rare-disease-and-genetic-conditions

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          1. Rebeeca

            Thanks jak, I’m also gluten wheat and dairy intolerant. So I can relate to not knowing what to eat. Do you ever get random brushing, just this week I’ve got a bruised finger

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            1. Jak Post author

              I really feel for you having such a restricted diet. I think I’d starve if I were gluten and dairy-free ontop of everything else I can’t eat!

              Re spontaneous bruising: this is something which is common in Ehlers-Danlos Syndrome so it something I get a lot. I don’t know how common it is in MCAD I’m afraid as any bruises I get I put down to Ehlers-Danlos. Having more than one illness it’s really hard for me to know which symptoms are down to which disease!

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  9. Mona

    There are so any people suffering from from Mastocytosis/histamie intolerance, that makes me feel I am not alone.Everyone is searching for a Specialists/Investigations/List of foods. I also suffer from Lactose intolerance,so you can imagine how difficult it is to plan 3 meals a day.
    Can we eat wheat or not (because of protien Glutin)? If someone can give this info plz.do. I thank you in advance.
    All the best to all.
    Mona

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    1. Jak Post author

      Hi Mona

      Wheat is allowed on the low histamine diet as it is not high in histamine. However, some people find gluten a problem as it causes them inflamation. I don’t have any problems with gluten/wheat but we all react differently to foods. You can try eliminating it for 3 months and see if it helps – if you feel no different re-introduce it, because grains are important sources of calories and nutrients.

      Jak x

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  10. Lolacat

    Great post. And very true. Everyone is different and food sources vary around the planet. I discovered the hard way that some “good” foods, such as green beans need to be cooked to reduce the lectins. I kept wondering why my snack of organic green beans from the farmers market was making me flush.

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  11. Lolacat

    Great post. And very true. Everyone is different and food sources vary around the planet. I discovered the hard way that some “good” foods, such as green beans need to be cooked to reduce the lectins. I kept wondering why my snack of organic green beans from the farmers market was making me flush.
    I also have joint hypermobility. Never thought there might be an autoimmune connection!

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