Various people have been asking about the low-histamine diet. Unfortunately, there’s a lot of contradictory information on the web – I’ve seen the same foods on a “do not eat” list on one site and a “totally ok” list on others; googling can send you quietly mad. So I thought I’d share some info, based on my own reading and experience.
NB: This blog is not a substitute for professional medical services. Consult a competent professional on health matters.
What is histamine?
Histamine has many useful functions in the body. It is released from mast cells as part of a normal immune system response. When someone has an allergy, e.g. to pollen, it is released in response to a normally harmless substance, causing unpleasant symptoms – hence ‘anti-histamine’ pills. Histamine also occurs in foods to varying degrees. Some foods are naturally high in histamine, such as tomatoes. Others are high because of the way they have been produced. Ageing, preserving, smoking, fermenting, pickling and processing all increase the histamine content of food, so for example blue cheese, smoked fish, sauerkraut, alcohol and tinned food are all high. Some foods, additives and medications aren’t high in themselves, but are “histamine liberators” (encourage the body to release histamine) and some are “enzyme blockers” – i.e. reduce the body’s normal capacity to get rid of histamine.
In most people, histamine gets rapidly broken down by enzymes: DAO (histamine in the gut) and MAO-b and HNMT (intra-cellular histamine). But people with low activity in these enzymes can end up with an imbalance – too much accumulated histamine, and not enough capacity for metabolising it.
Too much histamine can cause various symptoms including headaches, diarrhoea, asthma, runny nose and arrhythmia, plus a whole range of skin symptoms. Often these symptoms are attributed to food allergies or intolerances which then prove frustratingly hard to manage. The really interesting thing in my case was that reducing histamine levels reduced my sensitivity to an entirely separate and specific trigger – i.e. light. I’ve also become less sensitive to other things that used to make me ill, such as dust and certain foods.
Unlike most diets, this one has two elements:
1 What foods to eat – the best list I found is on the Swiss Community of Interest for Histamine Intolerance site
2 How food should be prepared and stored – the best guide to this aspect is a little book called “What HIT me? Living with histamine intolerance” by Genny Masterman. It’s really worth investing in. It contains lots of accessible scientific background; plus key tips for managing the diet, including “Learn to cook” and “Your fridge/freezer is your friend!” Because yes… when you can’t open a tin of beans, snack on a packet of crisps or get a ready meal out of the freezer, you really do have to get cooking…!
I still have flashbacks to my early months on an extremely strict version of the diet. They seemed to consist mostly of standing amid perpetual clouds of water vapour in the gloom of a blind-screened kitchen as I boiled frozen sweetcorn and steamed frozen fish.
But it’s all been worth it. And as I’ve got better, I’ve been able to allow myself more leeway. I eat chocolate now and again. I’ve even experimented with low-histamine wine, available from a company in Austria called Eller Finest Selections. (There seems to be much more awareness of histamine intolerance in Germany, Austria and Switzerland compared to the Anglosphere.)
The wine tasted pretty much like normal wine. I went pink in the face, waved my arms about and started talking very fast about politics. So one concludes that the effects are pretty normal too.
I’ve just been on holiday. In our caravan. In the part of Hampshire where the South Downs is just beginning to roll. In a week of crazy totally unseasonal September heat (30° on some of the days). Under glorious blue skies and strong sun.
We saw the majestic pines on Lepe beach, the arboretum and herbaceous borders at Exbury, strolled round the property-lust-inducing village of Chawton and visited the museum in Jane Austen’s house. We went on a steam train on the Watercress line from Alton to Alresford, had fish and chips in a pub, watched ducks float serenely on the beautifully clear chalk stream.
I wore a long-sleeved jacket and a below-the-knee skirt and a large-brimmed hat and put my UV-protective but nonetheless excitingly lace-trimmed parasol up when the sun was strong and direct. But I had sandals on my feet, and no additional layers.
2010 was the last year I went on holiday. During one of my better periods, we visited the same caravan site, a small square field bordered by tall trees. I knew the sunrise and sunset times by heart; we had a run of early starts and evening strolls, and for the rest of the time I stayed in the van and Pete went off on his own.
This time we dozed luxuriously through the dawn, watched dusk from the caravan windows and went on day trips like normal people.
At last I’m seeing the world in its true colours. Someone has taken away my box of subtle pastels and given me a primary school paint set.
Red orange yellow green blue purple
Rowan dahlia sunflower grass sky blackberry
Wham! Kapow! I’m still reeling.
Hooray for low-histamine diets, histamine-reducing probiotics, and dna-test-targeted supplements.
Hooray for my wonderful J, who gave me back every last leaf.
I am on the phone, talking to one of my telephone friends (this one has fibromyalgia and an autoimmune disorder and she lives in South West London). She is describing how badly she is affected when aircraft fly low over the house; it is getting so bad she may have to move, with all the disruption that entails.
And I feel it starting. Deep down in the centre of my brain: the embryonic stirring of a question mark, a tiny curl of doubt.
Aircraft? Really? Surely things can’t be that bad…. It’s a natural human reaction. Then I remember my own experience. I am ashamed, and I immediately suppress the thought.
For so many years, my situation was so rare, extreme and unusual that when I described it to people, often in an attempt to seek help, the response was usually incredulity. Somebody once said that three of the most powerful words in the language are “I believe you.” Their implied opposite is no less powerful. Repeated over and over again, the incredulity became a sort of psychic flaying, a periodic acid bath on top of the agonising burning of my skin.
I learnt all sorts of things during my years in the dark. I learnt how to locate and identify clothes and talking books by touch; how to find ecstatic joy in being well enough to clean the loo; how to sift, from a day of crushing boredom, a tiny nugget that might make my husband laugh.
The biggest lesson of all has been the importance of listening – really listening – to what people are telling me; keeping my mind open, no matter how what they are saying differs from my own experience of life; resisting the temptation to pull up the shutters of scepticism and think “this cannot be”; remembering that we understand only one small part of this wonderful, terrible world.
I needed this so much. And I’m just immeasurably, immeasurably grateful that the people closest to me gave it, absolutely, freely and without question.
I know many others are not so lucky.
I was pretty normal until my early thirties. Then my skin gradually became excruciatingly sensitive to light. The condition grew so extreme that I had to spend most of my time in a totally blacked-out room.
Over the years I’ve tried everything to get out of the dark: acupuncture, meditation, hypnotherapy; spiritual healing, strange diets, internet pills; private doctors who could be persuaded to offer a telephone consultation or paid to come to the house. Sometimes I did manage periods of improvement when I went for walks, Dracula-fashion, at dawn and dusk. But these patches of hope were fragile and never sustained. Lying in the dark with my skin on fire I often planned my suicide.
I survived because of the love of my partner and my family. Because of talking books – I’ve listened to hundreds – that took me to different worlds. Because of unexpected telephone friendships with other people living with chronic illness. And because at my absolute lowest ebb, desperate to find something to do in the dark, I started to write about my experience [Girl in the Dark, published by Bloomsbury 2015]. [In USA, published by Penguin Random House]
Then something amazing happened.
The wife of a friend trained as a nutritional therapist.
She persuaded me to be her client number 2.
She looked at my whole case from first principles.
And she found the answer!
It’s not an overnight cure – I’m still very far from normal – but a steady, sustained, continuing improvement, going far beyond anything I’d dared to hope.
I’m coming back to light, to life and to the world, after so long alone in the dark. Each new step is intense and surprising and crazy and beautiful. That’s what I want to share in this blog.