To eat or not to eat?

UPDATE 15 OCTOBER 2016:  This page has obviously been shared on social media and has recently received a lot of visitors.  I just wanted to say that the original post was written 2 years ago and in that time a lot has changed, so I have now updated the content to reflect my current knowledge.  In particular I’ve discovered that no fruit and hardly any veg has been tested for its histamine content, so I now feel very differently about eating them.  Please see the Low Histamine Food Info menu at the top of the site for more up to date information on histamine in foods, in particular the ‘Histamine & Food: the Evidence’ tab.

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Following on from my last blog post, I thought I’d share with you some of my struggles with Allowed and Excluded foods on a low histamine diet.  As I’ve already pointed out in various articles on my blog, there is no consensus on histamine containing/liberating foods, as the research simply hasn’t been done yet.  That doesn’t stop some people posting on my blog that this list or that list is the definitive low histamine food list, or that this app or that app tells me all I need to know about histamine in foods, though they never have the research to back these claims up.  The whole area is such a mine field, and when I first began to delve in to the world of histamine the stress and conflicting opinions gave me a whopping headache!

In the end, I decided to just have a go at a (supposedly) low histamine diet I thought I could stick to and see what happened.  I ditched foods that I used to eat a lot of, like strawberries, Cheddar cheese, aubergienes, items containing vinegar (particularly sauces and dressings), tomatoes, tinned tuna fish, chocolate, yeast (how I missed proper bread!), orange and pineapple juice and yoghurt.  Through trial and error I discovered I also react to bananas and cashew nuts, though am currently tolerating macadamia nuts (similar to cashews) ok.

Three years down the line and having throughly research histamine in foods I’ve now re-introduced several items I originally excluded,such as baker’s yeast and berries, and am doing fine on a less restricted diet.  The following are items I eat regularly, the inclusion of which on a low histamine diet causes confusion for some people who read my blog:

1. Berries

Most low histamine lists exclude berries, particularly strawberries, as they are supposed to be histamine liberators.  There is no such thing as a histamine liberator – it is impossible to measure liberation of histamine from mast cells after food consumption and, even if it were, no-one has done it as far as I’m aware.  I’ve no idea where the myth of ‘histamine liberating foods’ has come from but it’s not based on any kind of fact.  Blueberries and blackberries are high flavonoid foods, and flavanoids contain Quercetin.  Quercetin is a mast cell stabilizer so I eat blueberries and blackberries (picked straight from the bush in my garden).

2. Pomegranates & other fruits

Again, many low histamine lists exclude pomegranates as being a histamine liberating food (of which there is no such thing).   This study from 2009 shows that pomegranate extract may inhibit mast cell activation due to its role as an anti-inflammatory.  Ergo, I eat pomegranates and drink POM juice (although with all juices, even those I juice myself, I dilute with water or milk so as not to have a massive sugar rush which puts strain on insulin levels in the body).  There has been no research done on the histamine content of fruit as far as I can find,  so I eat most fruits as they are so good for you, with the exception of dried fruit (there is evidence to suggest aged foods are high in histamine).  I also react to bananas (for reasons unknown) and apples (as a cross reaction to my birch pollen allergy, nothing to do with histamine!) so they’re now also off my list.

3. Citrus fruits

All low histamine diets advocate excluding citrus fruits as they are touted to be histamine liberators, however as mentioned above there is no such thing as a “histamine liberating food” so  I include small amounts of lemon juice in my recipes because without lemon juice most sauces and jams would be un-makeable and I personally just can’t live on a dry diet.

4. Quorn & Mushrooms

As I stated in my previous blog post, the fungi family are a bone of contention on a low histamine diet.  Some lists say they’re high histamine, though I haven’t yet found the research to back this up (please share if you have!).  The only research I could find on mushrooms was by Barcelona-based nutritionist Adriana Duelo whose work is regularly submitted to the SPANISH SOCIETY OF DAO DEFICIENCY , however there was no information on how the research was carried out or the testing methods used.  Her figures showed that mushrooms contain from zero to 1.8mg/kg of histamine which is less than that of swiss chard or rice, however I’ve no idea how accurate this data is.  I include mushrooms in my diet because they are incredibly versatile, quick, easy, I love them and have never reacted to them.

I include Quorn in my diet because it’s a useful, extremely versatile, high protein vegetarian food that I happen to really like.  And without tinned tuna, yoghurt and hard cheeses, which I used to eat daily, I do worry that I’m not eating enough easily digestible proteins, bearing in mind I have M.E. and without going into technical details my muscles are faulty and I strive to eat protein as a way of helping my muscles to function.  I don’t seem to react to either mushrooms or Quorn, so in my world that = Happy Days 🙂 .  As I say over and over again, however, if you react to mushrooms don’t use them – there are other veg you can use instead, for example leaks, courgette, squash.

5. Salmon

I haven’t put any salmon recipes on my blog, simply because it would cause no end of grief from some people and I would constantly be told that fish is high in histamine.  However, if fish is gutted and eaten (or gutted and frozen) soon after capture it’s histamine content is actually very low so  I choose to eat Tesco’s wild, frozen salmon as my friend Julie contacted Tesco and they told her their salmon was caught, gutted and frozen on board the boat so that’s as fresh as it’s going to get unless you catch it yourself!  I eat salmon because it’s just so good for you.  Fabulous source of Omega 3 oil, which has many vital roles within the body, and a great source of protein and B12.  I have never reacted to freshly gutted fish and it’s an important part of my pesco-vegetarian diet.

6. Cheese

Some people are surprised to see that I eat mozzarella cheese, along with other ‘soft’ cheeses like mascarpone and ricotta.  I spent a whole week once looking up how various cheeses were made and concluded that soft cheeses were pretty much ok.  Mozzarella isn’t aged or fermented – you can even make it at home (I personally don’t have the will or energy!) and is just separated curds and whey which is heated.  Some mozzarellas are made using a fermented live culture (which wouldn’t be allowed), but most aren’t.  Tesco’s mozzarella is suitable for vegetarians.

7. Tinned (canned) food

I hold my hands up!  I do use tinned beans in some of my recipes simply because they’re quicker than using dried.  My memory is so shocking I forget my own name some days, so remembering to soak dried beans overnight then having to boil them for ages before even starting to use them in a recipe would drive me nuts.  But as I state all the time on my blog, if you want to use dried beans knock yourself out.

I’m ill and don’t have much energy.  Not only do I live alone without any form of help and have 5 painful, exhausting, sometimes crippling diseases to contend with I’m also sole carer for my terminally ill Mum and have to keep an eye on my Dad who has dementia.  I don’t bake all my own biscuits or make every single item from scratch as I don’t have the energy – consequently I have to do buy some processed foods from the supermarket like the odd tin of beans.  However, I don’t beat myself up over it as I know I’m doing the best I can under difficult circumstances.  My diet is low histamine, not no histamine and that’s OK – you have to do what works for you.

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17 thoughts on “To eat or not to eat?

  1. Maeve Collins

    I know this is going to sound lame but did you ever actively cut out gluten and dairy and histamine. I had a lot of the symptoms you talk about and ended up too sick to leave my house and as soon as I cut gluten, dairy and histamine out of my diet I was an awful lot better. Gluten was the biggest problem. I was getting sudden drops in blood pressure, sustained tachycardia of 196 bpm for 20 minutes at a time just going for a walk, my resting heart rate could be as low as 40 bpm or as high as 150 bpm. I’d feel panicked for no reason, depressed etc… I’d go into mild shock every time I ate a meal. I’d be frozen to the bone and feel like someone hit me over the back of the head with a sledge hammer. I’d have swelling of my abdomen, and around my joints especially ankles and knees. I’d have weak muscles and joints causing hypermobility and then other times very stiff. Dizziness, confusion, blurred vision, memory problems, headaches, sinus problems, itchy all over. The first thing I cut out was gluten and my symptoms improved so much right away that hardly any were left. The sinus problems and itchiness cleared up when I went dairy free. And because of the help of your blog the last of the swelling has cleared up since I went histamine free.
    I know gluten free sound lame, like it won’t do much of anything but it saved my life. You don’t have to test positive for a gluten intolerance to have a gluten intolerance.
    Just thought I’d say it since you helped me.

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    Reply
    1. bertieandme Post author

      Thanks for the comment Maeve. I went completely dairy free for 2 months and it didn’t make one iota of difference. I’ve gone gluten free twice in the past and again it no difference. However, I am currently doing it again for a month as so many people keep talking about it lol! I’ll do a blog post on how I get on in December but so far no change, I’m sleeping really badly and my cough and asthma-like symptoms are back with a vengeance.

      Not sure what you mean about going histamine free, as no diet is histamine free. We actually need histamine in order to digest our food – histamine is vital for our bodies to function. As I’ve said in the blog post no-one agrees on what constitutes low histamine foods, so it’s impossible to avoid histamine as no-one knows the histamine contents in most foods. So not sure where you’re coming from there? Even the low histamine chef, who follows a very strict low histamine diet, eats mozzarella cheese, salmon, blueberries and lemon juice.

      Also bear in mind I don’t have histamine intolerance – I have mast cell disease. I also have M.E. and Ehlers-Danlos Syndrome (which I was born with, is due to inherited faulty genes and isn’t curable). I’m really glad your diet has cured you of your symptoms but sadly for me there is so much more going on than just histamine.

      Jak x

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  2. lynnjohnson72

    Hello,
    I love reading your blog. You have given me so many great recipe ideas. Since I have started doing my research on low histamine diets, most of the information/blogs seem to come from the United Kingdom. A little about myself: I live in Missouri (USA). I have “self- diagnosed” myself with a high histamine problem. I have been to so many doctors/ dermatologists asking about my hot flashes (I think you say flushes), stomach pain, heartburn (acid reflux), constant rashes, constantly lethargic, headaches, feet swelling, constant symptoms of allergies: runny eyes, runny nose, scratchy throat, etc. Every doctor has told me that I was suffering from allergies. My state and the states that I have lived in have alot of pollen, ragweed, etc.

    I was in the store discussing my symptoms, concerns, with some random woman at the pharmacy counter. Some stranger (I didn’t get his name) told me that he was military and literally told me that it sounded like I was suffering from high histamine. He told me to take Benadryl everyday (it is over the counter here) and don’t eat tomatoes, spinach, bananas, no coffee, tea, sunflower seeds, pizza, cheese, mushrooms, strawberries/ raspberries, fried foods, beer/ wine, chicken with skin, citrus fruits, chocolate, vinegar products, soda (carbonated drinks), no yeast, and to basically eat a gluten free and organic diet (whenever possible). He also told me about eating yogurt and reishi mushrooms (supposedly extremely good for you.) I thought he was crazy; yet, I also believed him. I tried what he said. Literally in days my rashes cleared up, my headaches were better, and I felt energetic. I also looked better. Benadryl is difficult to take at first; it made me very sleepy; but, my body adjusted after several days. I take it everyday.

    I try to follow the diet though I don’t always eat organic (unfortunately). Yogurt slightly upsets my stomach (I eat four 6 oz cups a day for the benefits); but, I feel soooo much healthier and energetic. Also, I drink organic reishi mushroom tea from Buddha Teas every morning on an empty stomach (order online), organic turmeric/ ginger tea once a day, and organic oregano tea every night (nasty stuff!). These aren’t technically “teas,” they have no tea (Camellia sinensis) in them- so I guess they are herbal tonics. I feel amazing. Seriously. The reishi mushroom tea is supposed to block histamine before it starts; it is also supposed to be anti- tumor and anti inflammatory. The oregano and ginger/turmeric (it has lemon grass in it) are also all anti inflammatory and may block or lower histamine plus other health benefits. I do have minor stomach upset (I know from the yogurt) but it is worth it. I plan on making my own yogurt starting around next week.

    I have tried to talk to my primary healthcare doctor about this; he is almost clueless: I had to give him websites. I have probably lost about 10 pounds in about 3 weeks because of my new food choices; I no longer have hot flashes either.

    Thank you for your amazing recipes and good luck to you. You are inspiring!

    Also, do you have a recipe for English scones? I had them once and I really enjoyed them!

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    1. bertieandme Post author

      Hi Lynn

      Thanks for the kind words – I’m so glad you find the blog helpful. I’m surprised you can’t find more help in America, as you have some of the world’s leading physicians on MCAD over there such as Dr Afrin and Dr Cem Akim! I know you’d have to travel to see them, but I also had to travel 300 miles to see Dr Seneviratne here in the UK.

      I’m currently trying Benedryl but have to work up very very slowly to a full adult dose as my mast cells degranulate so easily to drugs of nearly all types. It hasn’t helped my hives, sneezing or chest so far but I guess it’s early days. I’ll do a blog post about how I get on in a few weeks.

      I’ve made scones in the past but they’re not gluten free. A quick Google came up with this gluten free scone recipe – just substitute the raspberry jam for blueberry or rhubarb – sorry I can’t tell you what they turn out like as I haven’t tried them!
      http://www.goodtoknow.co.uk/recipes/316184/gluten-free-scones

      Jak x

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  3. GI'mFrustrated

    I, too, have found your blog exceptionally helpful! I have been struggling w/GI issues ALL my life… was on a feeding tube for a year in high school and had 12 ” of my colon removed at age 18. I was only recently diagnosed w/EDS and some of the people on a message board read my story of multiple food/environmental/med allergies/sensitivities and suggested I look into MCAD. Although the allergist was receptive, the tryptase levels were normal (so they couldn’t slap the Systemic Mastocytosis label on me and call it a day) and I couldn’t even tolerate the antihistamines they gave me to help so I’m kind of on my own now… ugh!
    I keep VERY FEW foods down, but I realize that most (if not all) of my diet for the past year + is comprised of HIGH histamine foods. Seems worth a try since I have nearly every single symptom you mention (and more that are not). I look forward to starting my own journey and sincerely appreciate reading about your experiences… Thanks!

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    1. bertieandme Post author

      HI

      So sorry to hear of your GI problems. I don’t think many people realise the severe gut issues that can come along with EDS 😦 . Since I started peri-menopause my GI issues have gotten much, much worse – I only had constipation and chronic nausea to deal with previously.

      Nightmare you can’t tolerate anti-histamines. I know you’ll know all this, but have you been prescribed Gastrocrom (Nalcrom) to stabilize mast cells? Some people still can’t tolerate it, but if you can it does seem to be helpful. Also Vit C and Quercetin supplements might be worth a go, starting off on a very small dose and working up.

      I also was disappointed when my tryptase came back normal. As you say, would have been so much easier with a straight forward Systemic Masto diagnosis :-/

      Good luck with the diet. It’s helped a little bit, but not changed my life. But then a little bit is better than nothing!

      Jak x

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  4. jessica

    Thank you so much for this post and your resources. I’m only a month in to this adventure, but I am so happy to find people who are generous with their insight and experiences to help guide me along. I find that trying new foods is about overcoming fear. I was absolutely incapacitated at first. Now that I’ve tried a few things and the world hasn’t ended (and my flare hasn’t been like what brought me to this diagnosis), I’m gaining more courage, but it’s been one of the most challenging parts of this battle.

    And I absolutely loved that you finished this post off with a berry sundae! Homemade blackberry sauce and Haagen-Daaz vanilla ice cream has been a staple in my diet as I figure out what foods work for me and what don’t. Now that I know it doesn’t affect me, it’s the one thing I can look forward to if the rest of the day of eating has been either difficult or disappointing.

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    1. bertieandme Post author

      Thanks for taking the time to comment Jessica. I totally empathise with the being petrified thing when you first start an elimination diet then begin re-introducing foods. It really does take courage, so well done you! And yayyyyy for Haagen-Daaz – I love it too 😉 Good luck in your journey. Jak x

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      1. Kerry

        Great information! My diet is gluten and sugar free. I have had candida issues for years which got chronically worse with age but went away when I was pregnant. I finally figured out with all the research that it is caused from my leaky gut. I am going to to try to follow a low histamine diet to see if it helps. Had a bowl of chili last night that was sitting for days and my whole back was itching in the middle of the night. No more leftovers for me! I usually take a zrytec every other day because I always seem to itch usually at night. Thanks again! Kerry

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  5. Donna Woodward Taylor

    I have been gluten and dairy free for 14 years, I genuinely don’t think I would still be here if I hadn’t. It took a while (a year at least) to heal my gut and I felt almost normal for years then all of a sudden I went rapidly downhill. I think this was due to a congenital cyst which was constantly infected. I had it operated on and again got better for a while but it has grown back. I think the infection is putting my immune system on red alert 😦 My mum thinks I am starting peri-menopause too (she chooses to ignore the EDS diagnosis) as I am 44. There are so many factors to consider. My initial feeling was “thank God it isn’t MS” but now I am beginning to think that people with MS have it easier as people are more accepting and there are drugs that can help xx

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  6. Janine Dickenson

    I am so happy to discover your site! Especially the list of what you CAN eat, not a list of what you shouldn’t! I was diagnosed with Lyme, and have felt sick on and off for 5-7 years, now my naturapath suspects I have a problem with Mast cells or histiminine, so I am just investigating. I suspect my body went slightly haywire when I was especially ill. I also have hereditary hemochromatosis (luckily, diagnosed before any symptoms) so who knows how that comes into play?

    I was overwhelmed by what I could not eat, didn’t know what to shop for. Now, list in hand, I am on my way to the grocery store! I look forward to throughly reading your entire blog! I live in premiere wine country)so the wine thing will be tough, but I’m going to lay off all red, and limit any white!

    Also my doctor wants me to try ketotifen (compounded Rx) , and then perhaps the DOA thing. Have you tried/heard of /thoughts RE: ketotifen?

    Thanks again! This site is THE BEST!!!

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    1. bertieandme Post author

      Hi Janine

      Really sorry to hear you’re suffering, but so glad my site is helping 🙂

      Mast cell stabilizers like Ketotifen and Sodium Chromoglycate have mixed results in mast cell diseases. For some people they make the difference between life or death, others see no response and sadly some people can’t tolerate them and actually have a mast cell reaction to them. I think all you can do is try them and see. I’m surprised you’ve been offered Ketotifen as a first line of treatment though. Most people with suspected MCAD take anti-histamines first, usually a combination of an H1 and an H2 blocker (eg. Zantac and Zyrtec). If they help symptoms it’s often a sign that you do have a mast cell issue. They’re much less potent than mast cell stabilizers like Ketotifen. There are also supplements like Quercetin and Vitamin C which you can take, which both stablize mast cells.

      Personally I wouldn’t start taking DAO supplements until I was sure I had a DAO deficiency. DAO deficiency leads to Histamine Intolerance, which is a different disease entirely to Mast Cell Activation Disorder. There is a test for DAO deficiency – don’t know where in the states it’s available though as I’m in the UK.

      The one thing I will say about drugs and supplements for MCAD is that they’re only part of the solution. If you have mast cell disease you absolutely can’t just take a couple of pills and expect it all to go away – I wish it were that simple 😦

      Re drinking wine, I think if you’re serious about going low histamine alcohol of any variety is a big fat no no. Alcohol is one of the the worst offenders for histamine. If it’s any consolation I’ve been tea-total for 20 years and it hasn’t killed me 😉

      Good luck with everything!
      Jak x

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  7. Steph

    I’ve found an app that might be of use to you if you use a smart phone ? Just go to
    histaminintoleranz.ch for up to date stuff in low tolerance . This site even has medications listed . Codeine and ibuprofen both high histamine . I suffer from chronic diarrhoea as a result of surgery for Bowel cancer . I have neuroendocrine tumours , different sites throughout my body . Never knew what the meant in terms of my health but realized that certain foods , mainly my favorites , wouldn’t you know? Aubergine , tomatoes , egg white . My son , a personal trainer , had a client that had spent a lot of time and money sorting out her IBS . She sent my son the info and as we were in holiday all together , it suddenly clicked with him and suggested I may have a problem . Little did I know ! It’s been four weeks of looking and researching .. Yes .. I do fall off the wagon so to speak but now ., at least I know why . So thrilled to find these resources ! Hope it helps you too ?

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  8. Dixie Lawrence

    Actually there are histamine liberators, tomatoes, pineapple, papaya, mango all contain HFR (also known as TCTP). HFR is histamine Release factor, the protein that regulates the histamine neurotransmitter.

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    1. Jak Post author

      Thanks for that Dixie. Please can you direct me to the research on this, as I could find no research on histamine liberators and would be interested to read it. Jak

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