Diet update

I barely mention food on my blog these days.  That’s because, touch wood, I don’t have many issues with food any more.  Note the word many, not none, because my Histamine Intolerance isn’t cured just managed and my Mast Cell Disease is here to stay.

I do still stick to a low histamine diet, if such a thing exists, and have been on it now for 3 years.  Being pesco-vegetarian I used to eat a lot of fish, including loads of tinned tuna, and a LOT of hard cheeses and I think it was these two items which were the biggest histamine load in my diet.  I no longer eat hard cheese (God I miss Cheddar and Parmesan!) but do still eat soft, immature cheeses like mozzarella, mascarpone and ricotta on a daily basis and am doing fine with them.

I still eat Salmon twice a week but instead of going for fresh I eat wild salmon which is gutted and frozen on the boat on which it’s caught (according to Tesco), thereby reducing its histamine content.  I have no problems with eating Salmon, though I steer clear of any other fish as I don’t know how old it is or when it was gutted.

The other food item I used to eat tons of is tinned tomatoes and, while there is no evidence that tomatoes are high histamine foods, I still avoid them simply because I’m scared not to!  My diet is working and I’m not tampering with it too much.

Having said all that, when I wrote my ‘Histamine in food: the evidence‘ post the lack of research or testing for histamine in most of the foods I avoided was startling, so I decided to re-introduce some of my favourite foods and see how it went.  For several months now I’ve been eating normal bread containing yeast, chocolate (so long as it didn’t contain soya lecithins as soya is proven to be high in histamine – see list at end of post), lemon juice and small amounts of products which contain vinegar like store bought mayonnaise.  I’m happy to report I’ve noticed no increase in my histamine symptoms whatsoever 🙂  And being able to eat normal bread when I’m out and about and chocolate when I’m hormonal has made my life a whole lot easier and happier!

I do still have a reaction to food sometimes but I’ve worked out it’s not usually the food per se, it’s how high my histamine bucket is on any particular day.  Stress creates histamine for me, so if I’m having a stressful day by evening my histamine bucket is fairly full and I can feel a bit weird after my dinner regardless of what food I eat.  Digestion produces histamine in and of itself, so just the very act of eating can tip my bucket over into a mild reaction.  It’s not nice, but I know it won’t kill me and will settle in an hour or two.

Hormones affect my histamine load substantially and I am always more reactive to everything the week leading up to my period, so again I can have mild reactions to anything I eat during that time regardless of what the food is.  As I’m in peri-menopause my hormones levels are all over the place, so I think I may be in for a bit of a rough histamine ride in the next 5 years as I finally go through The Change.

The seasons affect my histamine load too.  I am allergic to birch pollen, so in Spring when Birch trees are in bud my histamine load is high and I can again react to foods that wouldn’t normally bother me.

Having said all that, my reactions are nothing like they used to be.  I used to have pounding tachycardia, severe flushing, bad muscle spasms, nausea and retching, severe anxiety, head pain and just generally feeling awful to the point where I absolutely had to lie down.  This was followed by crippling exhaustion which took several hours to subside.  These days my reactions are much less intense thank God.  I still have tachycardia and my BP readings are about 150/90  with a pulse rate of around 90 (my normal readings are 115/57, pulse 65), which isn’t pleasant but isn’t life threatening.  My flushing is minimal and although I do still feel nauseous I don’t retch like I once did.  I feel anxious but it’s manageable, no head pain and I feel tense rather than having outright muscle spasms.  Having a reaction still isn’t nice but at least I know what it is and how to manage it (usually by having a soak in a warm bath followed by distracting myself with crocheting or doing something on the laptop).

As my histamine levels are generally quite low from following a low histamine diet, I can “cheat” on my foods now and again.  When I eat out, which is maybe twice a month, I tend to just choose whatever I like on the menu – cheese, tomatoes, fish, marmalade, sultanas and other dried fruit and anything else I fancy.  It’s very rare I react to anything until my histamine levels are already high from something else, eg the pollen season.  I know I’m lucky to be able to do this as I don’t have true allergies to foods – mine is definitely a histamine load problem and as long as my histamine bucket is kept low I can fill it now and again without it overflowing.

When I first started to reacting to foods I honestly thought I would die.  I had no idea what was going on and had no clue how to fix it.  Going on a low histamine diet was tortuous – I already had everything I ever wanted in life taken away by illness and meals were the one thing I still enjoyed – my dinner was something I looked forward to all day and having a warm mug of hot chocolate and a couple of biscuits before bed helped me sleep!  Having to quit my favourite foods felt like the last straw and I dreaded mealtimes.  On top of which, I could no longer eat ‘convenience’ or store bought products so had to cook every single thing from scratch, which took up every ounce of energy I possessed.  My entire life revolved around making food and then being terrified to eat it.

Fast forward 3 years and I now batch cook and freeze, which gives me a break from cooking every day.  I’ve found what I can, and can’t, eat and have managed to find substitutions like my red pepper sauce which means I can still make my favourite recipes.  I’ll be honest, they don’t taste as good but I’m used to them now and at least I’m enjoying my meals again.  I’ve even found naughty snacks that I really like, such as Jacobs Cracker Crisps that are terrible for me nutritionally but when I’m miserable and want to eat crap they taste delish 😉  And there is nothing nicer on a hot day than a dish of vanilla Haagen-Dazs ice cream topped with a chocolate Flake!

My intention is that this update gives those of you in the early stages of histamine intolerance hope that your symptoms can improve, that meals can still be enjoyable, that comfort food isn’t banned forever and that eating out isn’t a thing of the past.

For anyone who wants to try eating soy-free chocolate here are the products I’ve found which use sunflower lecithins instead of soya:
Quality Street mint flavour Matchmakers
Cadburys Flake
Cadbury Twirl Bites
Toffee Crisp Sharing Block
(all of these are also gluten free)

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11 thoughts on “Diet update

  1. Glo

    I’ve found over the years about the same thing you have. I can even indulge in little cheddar. I know if its too much due to the itching and hiving. I have also learned eating as little processed food as possible is a big help. Takes a while to shop as I do a lot of label reading but I’d rather do that than have a reaction. Stress is also a huge factor and I’ve managed to cut back my work hours. A little poorer but a lot happier.

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  2. d

    Thanks for this post Jak. I am pleased to say I can now tolerate some bread as well – I followed your lead and tried a white version of the bread I would normally buy at my bakery and it seems I tolerate it much better than the whole wheat. No idea why as I tolerate other forms of whole wheat (e.g. pasta) but who cares! So nice to have a sandwich now and then, or toast! I sample a bit of chocolate on occasion and it’s fine in very small doses (on my side of the world, your best bet is an organic grocery store to get soy free chocolate but always check labels). Like you, I have figured out how to keep my histamine low and what stresses it (chemicals, allergens, sulphites, stress, lack of rest, chemicals…did I say chemicals? : )

    I agree that having food taken away, when it can be a comfort, a way to come together with others, etc. was a terrible blow at first. For those who are new to it, it takes some time to figure everything out but it does get better. There is no “one size fits all” approach to this – everyone is different, has different triggers, tolerates different foods but at least having some kind of road map (like Jak’s recipes) that you can tweak goes a long way to managing the histamine load. I still haven’t gotten to the point where I can go out to eat and order what I would like to order but I am making small steps in that direction. I went out for dinner and ordered a scaled back version of something on the menu. My face was flaming red after the meal but it was delicious and I can live with looking like a tomato on occasion : ) Much better than when this all started and my throat would start to feel swollen, my chest tight and I would feel unwell for a few days afterwards. It will always be a challenge – unless I cook it myself with ingredients I use all the time, there is always an unknown variable, but hopefully the resulting symptoms will be mild and short-lived.

    I am going to take a look at some of the other foods you are trying and see if I can add anything else back in, now that I have reached a point where I feel I am managing and have had some small successes. Thanks for the push!

    d

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    1. Jak Post author

      Really pleased you are managing your histamine load d – I know food has been a big issue for you. Good luck in re-introducing foods. As you say, it’s all about balance and amounts, trial and error. Jak x

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  3. donnahuebsch

    Jak, I enjoyed reading your post. We are at the beginning of finding out whether my 21-year-old daughter has mast cell problems. In mid-August we saw Dr. Lawrence Afrin in Minnesota, and are waiting for our test results. We have known for several years that Kimberly has Ehlers Danlos Syndrome hypermobility type. She has also been bed bound for over 2 years with a severe case of POTS. It is so encouraging to read about people who have found ways to improve their condition.

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    1. Jak Post author

      Thanks for the comment, though really sorry to hear your daughter is so poorly – must be heart renching at such a young age 😦 Dr Afrin is the best there is, so you’ve been lucky to see him. I really hope the tests shed some light on your daughter’s issues.

      I was bedridden for 10 years and very very poorly, but now live mostly independently and can drive again etc. So it *is* possible to make an improvement, however far away that looks at times. Jak x

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    1. Jak Post author

      There is good research to show that hormones, particularly oestrogen, bind strongly to histamine and causes huge symptoms. Looking back my mast cell issues really started in puberty and then went off the charts as I entered peri-menopause when I turned 44 x

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    1. Jak Post author

      Oh God, no pressure for me to be doing well then lol! 🙂 Really like your new blog. Is it powered by WordPress? If so is there an easy way of adding a ‘Follow’ button for wordpress users so that new posts appear in my Reader? No problem if not, I’ll follow via email. Jak x

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