More about Food

pearVarious 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.

Low-histamine diet
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.

 

 

Holiday!

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.

Getting Better – The Science Part (2)

anna-lyndsey_steps2One morning in June 2016, we get in the car in Hampshire and Pete drives up the motorway towards central London. The journey takes 2 ½ hours – most of that time spent crawling in traffic from the Hammersmith flyover.  We drive slowly along the river in intermittent rain and I squeak with excitement as I spot landmarks from my previous life – the Tate Gallery, Millbank Tower, the Palace of Westminster, Hungerford Bridge – and marvel at the cranes and new apartment blocks now canyoning the Thames.  It is a significant day in many respects: 23 June.  We spot the Labour Remain Battle Bus, and ‘Independence Day’ posters.
Finally, I’m in the hospital and I’m talking to the consultant I haven’t seen for 10 years.
He is most interested in the histamine approach that has led to me being well enough to come back to the hospital.  In his view my extreme skin burning in response to light with no visible sign would be classified as a type of cutaneous dysesthesia, a group of conditions characterised by very severe neuropathic pain sensations (including intense burning, itching and pain) – i.e. nerves responding inappropriately in a variety of ways.  In some people this happens without particular triggers, in others there are triggers such as light, heat or touch.  This is a developing area and this group of disorders is not yet fully understood; the current conventional treatment for such cases would be a drug such as Gabapentin, which is prescribed for neuropathic pain, and referral to a Pain Clinic.  Given the success I’ve had, and the continuing upward trend, we agree it makes sense for me to continue doing what I have been doing, but bear the alternative approach in mind if things should become worse again.
Now I know, however, that I’m not the only burning person out there; that, actually, we are acknowledged by orthodox medicine, if not yet fully understood; that we have a name.

“It’s all psychological…”

pugl_green shutterA girl and her mother, talking on the radio, stop me in my tracks.
The girl had visual problems when she was eight years old, but specialists found nothing wrong.  They diagnosed her with “psychological blindness” and sent her home, devastated, confused, convinced she was a liar and a bad person.
They found the brain tumour eventually.  By the time it was removed, she had lost most of her sight.

My consultant never told me my condition was psychological, and my partner and close family, who knew me, and saw the evidence at first hand, never doubted the physical reality of the extreme photosensitivity that had devastated my life.  But in the space between the two, I was constantly bumping up against the “it’s all psychological” attitude.  People with minimal knowledge of my situation – beyond that it was rare, terrible and continuing – felt entirely entitled to pass this judgement, this casual invalidation of my whole experience.

Via the telephone that became my lifeline, I got to know other people with chronic conditions.  The same thing had happened to all of us.

What’s going on here? Two strands of thinking, tangled up – I’ll call them the ‘strong’ and the ‘weak’ hypothesis.  I had my purest experience of the former when a Reiki healer came to my house.  After asking whether, when I went into the light, I felt “exposed… lots of eyes looking at you”, and whether I might subconsciously believe that my relationship only kept going because I was ill, she announced “Ah well – there’s always a benefit, isn’t there, even if we can’t see it.” – i.e. my blacked-out room and agonising burning skin were manufactured by me to gain some obscure psychic payoff.

And the same applies to all illness, everywhere, according to hard-core New Age bibles (bowel problems manifest a fear of letting go of the old, back pain indicates guilt…).   I have even heard it said that a woman aged 59 whose cancer became inoperable could not face retirement with her unpleasant husband, and thus took this way out.

This position seems to me to be a turning away from the tragic reality of life.  We are psyches embodied in the material world, liable to be knocked about by genetic susceptibility, environmental exposure, or simple chance; loving, loved, contented people, bursting with plans for the future, are cut off, every day.  The theory is also absurdly narrowly focussed historically and geographically – I have not yet seen a metaphorical theorisation of the Ebola virus, or bubonic plague.  It seems a necessary adjunct to the New Age theory that you can get whatever you want in life, and that therefore whatever you get (such as a massively frustrating chronic illness) must in some way be what you wanted.

For me, the following gets closer to the human condition, whether you believe in God or not:
“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

So much for the ‘strong’ hypothesis.

The ‘weak’ hypothesis divides illnesses into two categories.  High blood pressure, heart disease, cancer etc. are ‘respectable’ diseases with an underlying physical cause.  However, unusual conditions that people have not come across before, and illnesses for which doctors do not have direct treatment, especially those that go on and on, boringly, for years, without either killing you or getting cured, are in contrast thoroughly disreputable and must therefore be psychological in origin.  “Can’t the doctors do anything about it?” a visitor asked me incredulously, as we sat together in my black room.  Ah, there speaks one of the blessed, whose faith in the capabilities of human knowledge is as yet unbattered by experience.  The sea of what we know is vast; the ocean of the unknown vaster.  We could all use some humility in the face of the as yet untreatable or unexplained, rather than reaching so quickly to close the door and bar it with a psychological explanation.  As research progresses, conditions push their way through the barrier – Gulf War Syndrome, for example, dismissed for years as psychosomatic, until finally a distinctive abnormality was found.

Such ‘explanations’ frequently support the vested interest of an establishment unwilling to change entrenched policies or compensate those harmed.  In a more intimate sphere, the associates of a chronically ill person – who is often demanding in terms of sympathy and care – gain the pleasure of superior insight, a justification for withdrawal, the spurious comfort that ‘this could not happen to me.’

 

The Difference that Day Makes

20160618-_09_poppyIn a corner of our garden, just where the conservatory joins the brick wall of the house, a mysterious plant has taken root. It has elongated, slightly furry leaves that lie flat close to the ground, and tall slender stems, about 12 inches high, producing multiple branching flower heads.  Despite its elegant, aspirational appearance, it is probably a weed.  But nothing else seems to want to grow in that corner, even the lawn, so we let the plant take over.  It pops up every summer, in greater and greater profusion.

For many years, if I was in one of my better periods, I saw the garden only at dusk.  I would look at the mysterious plant and think vaguely, “Those flowers will be interesting to see, when they finally come out.”  But they never seemed to, or I never noticed, and they turned into fluffy spherical seed heads without revealing any more.

This year, my first proper summer, the mystery has been solved.  I went out into the garden on a morning in June, and there were the flowers – bright orange and hairy, like multiple miniature dandelions.  And, like dandelions, of course, they close up, neatly and efficiently, as the sun begins to set.  As do the daisies that speckle the grass.  And the big silky poppies Pete planted in the border for photographic purposes.  And the small wild yellow poppies that have seeded themselves about the place.  And the gazanias.  Suddenly, going out in the daytime, I’m seeing all these discreet and bashful blooms splayed out shamelessly in the sun, being visited by pinstriped hoverflies and big fat bees.

Then, in July and August, at the high point of summer, I start seeing butterflies.  I’m utterly entranced, trying to follow with my eyes their crazy, non-rigorous, scatterbrained flight, picking out their colours and details as they tantalise among the flowers.

I’ve come across moths, of course, during my crepuscular phases, half seen and mysterious movements in the dim half-light.  But butterflies, supremely, are creatures of sunshine and the warmth of the day; I haven’t laid eyes on one for ten years.

They become my private symbol for this summer of renewal, for lightness and freedom after close and dark confinement, for the recovery of those thousands of pointless and trivial everyday choices which are none the less such a joy.

Café, with People

20131122-25nforgladeWe pick a dull morning in November 2015 for my first go at a café. Pete and I drive to the New Forest, to a wildlife park set among tall trees.  We arrive early, at 12pm, so there won’t be many people about, and we choose a table out of the direct glare of the fluorescent lights.

Pete goes to the counter to order our food. I have a baked potato with salad, and peppermint tea.  (Some things, I find, don’t change – those small metal flip-top teapots STILL pour water all over the table whenever you fill your cup).

The place fills up, and I stare and stare as I eat. I’m fascinated by people’s faces and smiles, their different sizes and shapes, their gestures and clothes.  I eagerly listen in on conversations in person and on phones. I even spot my first hipster beard, a phenomenon that, up til now, I have only read about in magazines.  It’s a fine example, black, silky and luxuriant, worn beneath large-framed spectacles in cherry red.

For so long I’ve had real people only in controlled doses, people I know, in ones or twos, very rarely more, and in my house. New companions joined me in the dark, as I listened endlessly to talking books, and for several intense hours I would follow their trials and tribulations, look on at significant moments of their lives.  But these were phantasmal beings, formed from the ectoplasm of words, edited, pruned, consistent, their very idiosyncrasies designed to facilitate the plot.

Real people are wild and weird and wonderful. They are hairy and bulging and scrawny and toned.  They discuss obscure matters with ferocious intensity but a maddening lack of specifics.  I feast on them as I eat my potato – I’ve been starved too long.

I still need to be prudent about the light, so we don’t hang around. After 20 minutes we get up to go – and I have the exquisite pleasure of discovering that not only did I not have to cook this meal, but I can leave the remains on the table, for somebody else to clear up.