Tag Archives: food

So what CAN I eat?

Following on from yesterday’s post on new research into the histamine content of non-fermented fruit, nuts & vegetables I thought I’d break down the information contained in the paper for us mere mortals to understand.

Histamine Intolerance (HIT) is thought to be caused by low levels of two enzymes: HNMT and DAO.  DAO is an enzyme in the gut which breaks down and converts the histamine we eat in our food, and if levels are low this process isn’t effective and results in high levels of histamine in our bodies (at least, that’s the layman’s version!).  In order to keep symptoms at bay, HIT patients need to stick to a low histamine diet, which makes perfect sense and has worked miracles for me personally.

However, there is very little information on the actual histamine content of foods and the researchers found that many foods excluded from low histamine diets actually have been shown to be low in histamine and therefore are safe to eat which is fabulous news!

What constitutes a high level of food histamine is currently guesswork – we don’t know what ‘high’ is, and safe levels of histamine in food probably differs from patient to patient depending on how well their DAO and HNMT are functioning.  I’m making the assumption that ‘high’ is anything over 20mg/kg but this is a purely made-up number in the absence of any guidelines.  Based on this, then,  the only non-fermented plant foods tested in this research paper and found to be high in histamine are:

  • Eggplant (aubergine)
  • Spinach
  • Avocado is borderline at just over 20mg
  • Fresh tomato & tomato ketchup is borderline at just over 20mg & chopped tomato is fine!

So as you can see, there are less than a handful of non-fermented plant foods which are high in histamine (though of course fermented plant foods like sauerkraut aren’t included and are known to be high in histamine).  I don’t know about you but this tiny list is a massive shock!  To think I’ve been missing out on loads of foods for no good reason for the past five years is heartbreaking.

This isn’t the full picture however.  The research paper suggests that it isn’t just histamine which may be causing a problem for HIT patients.  Other biogenic amines, such as putrescine, compete for DAO and the reason that patients report issues with foods low in histamine may be that they’re high in other amines.  We have no evidence this is true though – bare in mind it’s just a theory and might be totally wrong.

The biogenic amine putrescine is found in nearly all foods to some degree, so again we have no idea what a high level is, so I’m using 20mg/kg as my figure but it’s not based on anything.  The following is a list of ‘high’ putrescine foods – if you react to any of these, none of which are high in histamine, it might be you have an issue with putrescine instead:

  • Green pepper
  • Sweetcorn
  • Tomato, fresh, concentrate & ketchup
  • Peas (fresh & frozen)
  • Soybeans, dried & sprouted (but not soya milk or tofu!)
  • Banana
  • Grapefruit, fresh (juice is borderline)
  • Mandarin
  • Orange
  • Passion fruit
  • Pear is borderline
  • Papaya is borderline
  • Pistachios
  • Wheatgerm (but not bread or other wheat based products)
  • Green beans
  • Purple beans
  • Broccoli was borderline in 1 study but fine in the others
  • Courgette was borderline
  • Cucumber was borderline in 1 study but fine in the others

I regularly eat several of the foods on this list, including bananas, passion fruit, pear, broccoli, courgette, green peppers, sweetcorn and peas and have no problems with them whatsoever.  However, you may have a totally different experience.

Tyramine, another amine, was found in some of the foods tested, though in very low levels.   So using pure guesswork and nothing else I’ve based my ‘high’ figure on foods which contain a level of tyramine of 5m/kg – it’s not based on anything though and could be way off the mark.  Foods with a ‘high’ level of tyramine include:

  • Fresh tomato
  • Avocado
  • Plum
  • Green beans are borderline

Bare in mind that tomatoes and avocado contain relatively high levels of histamine, so you may react to those due to their histamine content, but if you have a problem with plums or green beans it might be due to their tyramine content.

Cadaverine was found in some of the foods tested, though like Tyramine in very low levels.   So using pure guesswork and nothing else I’ve based my ‘high’ figure on foods which contain a level of cadaverine of 5m/kg.  These include:

  • Spinach
  • Soy milk was high in 1 study but fine in the other
  • Tofu
  • Pistachios
  • Green peppers were borderline
  • Banana was high in 1 study but undetectable in the others
  • Grape was borderline
  • Almonds were borderline
  • Sunflower seeds were high in 1 study but undetctable in the other

The biggest question people new to low histamine diets asks is, “now I know what I can’t eat, but no-one tells me what I can eat!” and this new paper helps with this.  There is a long list of plant based foods which are low in all amines including:

  • Lettuce
  • Onion
  • Red pepper
  • Potato
  • Apple, fresh & juice
  • Grape
  • Cherry
  • Guava
  • Kiwi
  • Lemon
  • Mango
  • Peach
  • Pineapple (fresh & juice)
  • Strawberry
  • Hazelnuts
  • Barley
  • White bread
  • Wholemeal bread
  • Corn-based cereal
  • Oats
  • Pasta
  • Rice
  • Asparagus
  • Yellow beans
  • Cabbage
  • Cauliflower
  • Carrots
  • Celariac
  • Chard

If you have symptoms after eating any of these foods it looks like it’s down to a problem not related to biogenic amines and therefore isn’t Histamine Intolerance.

There are some interesting foods on the ‘allowed’ list.  Bread contains yeast and yeast is banned from most low histamine foods lists, however from the research trawl I did for my Histamine in foods: the Evidence page, and from this research paper, baker’s yeast (ie the yeast used in bread) tested low for histamine, it was the yeast extract (a by-product of brewer’s yeast) found in marmite which was the problem.  Many low histamine food lists exclude nuts but most appear to be low in all amines so should be fine.  Soya beans are also excluded on all low histamine lists, yet tofu and soya milk tested low in all amines and soy beans tested low in histamine yet high in putrescine.  It’s the fruit which has shocked me the most though.  Berries, cherries, pears, plums and pineapple are all excluded from low histamine food lists yet all are low in histamine and most are low in all amines so I will be eating strawberries again before the week is out (I already eat blueberries and drink pear juice daily so knew I had no problem with them).

Although dairy foods weren’t looked at in this particular research paper milk, fresh cheeses like mozzarella (but not hard or blue cheeses!), butter, cream and yoghurt have all been found to be low in histamine, though I’m unsure of their other biogenic amine content – I’ll look into that when I’m not suffering from a sickening migraine, which I currently am :-/  Most fresh meats have also tested low for histamine, but again I’m unsure of their other amine content.  So, all in all low histamine diets don’t need to be anywhere near as restrictive as they are which really is great news 🙂

In light of recent evidence I’m going to totally re-vamp the low histamine food list on my blog when I have the time, energy and brain power.  I haven’t been following the list faithfully for a long time and am managing my HIT symptoms really well, so for me the list here on my blog is way too restrictive.  However, as I say all the time, my blog reflects my experience and yours may be totally different.

The new research paper talks about cooking methods and the fact that boiling vegetables reduced their histamine content, sometimes dramatically.  So, if you’re having an issue eating raw veg you might want to try boiling it and eating it cooked instead.

The other thing to mention while I’m on about food reactions is that Mast Cell Activation Disorder (MCAD) and Histamine Intolerance (HIT) are two distinct and separate illnesses.  Patients with HIT only have a problem with amine-related foods, while people with MCAD can react to just about anything so trying to control MCAD symptoms by a low histamine diet alone is fruitless.  The two diseases can sometimes occur together as in my own case, but many people ‘just’ have HIT and most people with MCAD ‘just’ have MCAD, so  when I talk about low histamine diets I’m exclusively talking about controlling HIT.  If people with MCAD find eating low histamine helps some of their symptoms too that’s great but it’s much more complicated than just diet for mast cell diseases.  If you’ve been religiously following a low histamine diet for more than 6 months and are still reacting to foods, or are reacting to foods low in biogenic amines, or are reacting to other things in the environment like heat or cold, your period makes your reactions worse, stress or strong emotions like excitement make your reactions worse and/or your hair is falling out, I would imagine you have more than HIT going on and it’s much more likely you have a mast cell issue.

Advertisements

Food Shaming

I’ve written about the Food Nazis several times before.  Y’know, those people online who say that following this diet or that diet has helped them enormously and you can’t possibly want to improve your health because you’re still eating sugar/gluten/dairy/processed food/high histamine food (whatever that is) or “food with no nutritional value”.  And whilst I know that eating healthily is vital to………..well, health…………I also know that when you’re chronically ill there are days when you’re lucky to have eaten at all let alone have spent hours preparing raw foods washed down with a green smoothie.

There is so much emphasis on food in the management of chronic conditions that’s it’s easy to feel really down on yourself if you’re not able to follow the legion of (often contradictory) dietary advice circulated online.  But it’s important to remember that hardly any of this information has been backed up by research and even if it has been scientifically proven to help you are sick, your life is already ridiculously hard and you are doing the best you can.  Don’t let anyone shame you into thinking badly of yourself.

I thought I’d share with you a few pearls of wisdom I say to myself when I’m having a wobble and doubting that I am doing all I can to manage my diseases:

  • Jak, you live on your own with limited money and zero help.  Be proud that you manage as well as you do.
  • You don’t just have hEDS.  You also have MCAD, M.E. and cripplingly painful endo and adeno.  On top of that you’re going through the Menopause which even healthy women find difficult.  Be kinder to yourself.
  • Nausea kills your appetite.  If you haven’t eaten a thing all day and the only item of food you fancy is a packet of Wine Gums they at least contain sugar and sugar equals energy – it’s better than starving.
  • As a species, we have managed to survive and thrive for 2 millennia without chia seeds or sprouted peas.  And you have managed to survive for 24 years of chronic illness without them too.
  • What works for one person doesn’t work for another, especially when that other has both MCAD and Histamine Intolerance.
  • I live in the north of  England, not California.  It’s sodding cold here and a green salad is not going to keep me going when it’s -10C outside and I have to walk the dog, bearing in mind I have M.E and my muscles don’t work properly.  Without some seriously stodgy carbs I’d never get out of bed.
  • Your life is ridiculously restricted.  If you want to binge on Pringles and Jaffa Cakes washed down by pint mugs of Yorkshire tea every now and again knock yourself out.
  • If all you have the energy to make for dinner is oven chips and a fried egg you’ve just consumed 14% of your RDA for Vitamin C, 26% Thiamin, 16% Riboflavin, 16% Niacin, 30% B6, 18% folate , 11% B12 plus Vitamins A, D, E & K alongside Calcium, Iron, Magnesium, Phosphorus, Potassium, Selenium, Zinc, Copper and Manganese not to mention 490mg of Omega 3 fatty acids, 26% of your RDA of protein and beneficial to POTS sodium.  Processed or quick food does not equate “nutritionally deficient” whatever the food nazis tell you and it’s better than not eating at all cos you’re too knackered to make anything.
  • I am doing the best I can under very difficult circumstances.

I watched a talk on the proposed dietary research EDS UK want to undertake recently and while I’m sure, in an ideal world, eating a diet rich in nutrients which aid collagen synthesis and wound repair would be beneficial let’s not forget that lots of people with hEDs have a digestive tract that is so fucked up they are being fed via a tube into their stomach or heart.  Advice on a new diet isn’t going to help them much, or the estimated 10% of people with hEDS who also have MCAD and who are on restricted diets of varying types and severity.  So to spend £250,000 on a treatment which is only going to help a proportion of hEDS patients makes me kind’ve pissed not to mention left out in the cold.

I’m really, really, fed up of being left out in the cold simply because my illness is complex or severe.  Surely to goodness those people at the severe end of the spectrum are the ones we should help first not last?  They are the ones whose entire lives have been robbed, whose futures are bleak and who are suffering the most.  Instead, they are the ones ignored while the focus is on those easier to treat.  It’s been just the same with M.E. for decades until, of course, world renowned geneticist Ron Davis’ son became severely ill which has resulted in the severely affected being studied by Nobel prize winning scientists in a race against time to save his life.

We are not all on the same journey – the path for some is smooth, flat, concreted and accompanied by helpful companions and for others is rocky, pot hole strewn, uphill and crawled alone.  You can only do what you can do and don’t let anyone tell you that your best isn’t good enough.

Thoughts from an old timer

My post about being clueless as to what causes disease and in particular that we can somehow eat our way better has resonated with many of you, so I thought I’d do a follow-up specifically about M.E., a disease for which there are, if you believe the world wide web, a bewildering aray of “treatments” and even “cures”, many of which are food related.

I’ve had M.E. for over twenty years and like to think I have more experience of the disease than someone who has been sick for a year or two or researchers new to the field.  In the initial phase I was so ill I nearly died.  I then spent 10 of the best years of my life in bed having seizures, puking and crawling to the toilet every day of every month of every year without remission, and the latter 14 years functional(ish) but still very poorly.  And I’m not on my own.  I have many friends who got ill at roughly the same time as me but, unlike me, are devastatingly still as sick as the day they first developed the disease.  Emaciated because they can barely eat, wasted because they can barely walk, isolated because they can barely speak.

I know that people who are currently ill think that they are the pioneers of this disease and are trying novel treatments by using oxygen chambers, drinking Kombucha tea, shovelling in probiotics, taking this drug or that drug, not eating gluten/dairy/sugar/carbs/insert-just-about-every-diet-known-to-man-here, eating worms, having enemas, drinking whale pee (just kiddin’ , in case you were wondering 😉 )………the list goes on.  But they are not.  The original ME sufferers have already been there, done that and got the t-shirt.  We have not laid in our sick bed and given up.  We have fought like cornered tigers to get better.  My parents spent over £20,000 on tests and treatments for me but none of them worked – in fact, 80% of them made me ten times worse.  Please, I beg you all, learn from our journey and stop wasting time, energy and money trying all this crap then torturing yourself with guilt because it hasn’t cured you.

Much of the research into M.E. at the moment is concentrating on fatigue and the role of energy metabolism but here’s the thing – I am not fucking tired.  I don’t know how many times I need to say it.  M.E. has nothing to do with chronic fatigue.  Nothing.  NOTHING.

When you get the flu or a really bad cold you feel absolutely wiped and barely have the energy to get to the loo.  This doesn’t mean there is a fundamental problem with your body’s mitochondria or how it uses energy from food.  It means that, for reasons as yet unknown, when our immune system is in action fatigue is a by-product.  A secondary symptom to the main event.  And so, I am utterly convinced, will be the “fatigue” associated with M.E.

I say this with such conviction because I have lived with M.E. for nearly a quarter of a century.  It started with a tummy bug, ie an immune event.  It then really took hold after gastroenteritis, an immune event.  I became severely affected following travel vaccinations, another immune event.  I saw an almost overnight remission of all my symptoms following another vaccination and these days know I’m coming down with a bug because I feel freakin’ brilliant for the 48 hours preceding it.   None of which is affected by not eating carbs or sugar, or having oxygen therapy, or taking some supplement or other, or some drug or other, nor bugger all else.  My best friend is a clinically diagnosed Coeliac, who hasn’t eaten a speck of gluten in over a decade, yet is still sick with M.E.  Another friend can barely eat and lives on an almost exclusively liquid diet, yet still has M.E.  Food is not the answer, never has been and never will be.

M.E. is an immune disease.  End of discussion.  I don’t even think it’s an auto immune disease, but an acquired immune disease.  Something external usually a vaccination or virus (the type of which is irrelevant) triggers the immune system, inbetween turning on, doing its thing and turning back off again something unknown goes wrong, and M.E. is the result.  It’s the “something unknown” bit that’s the puzzle and needs to be the focus of research.

The fact there are currently no answers is a bitter pill to swallow.  So-and-so improved after not eating sugar for six months so it has to be the cure, only of course so-and-so didn’t actually have M.E. in the first place.  Someone else discovered they had some rare infection and were cured by treating said infection, in which case they didn’t have M.E. either.  When there is no diagnostic test people are mis-diagnosed all the time, especially when some Doctors think that everyone who is “fatigued” has M.E.  And this is compounded by the fact that, until last year, severely affected sufferers weren’t included in research studies because they were, ironically, too sick to get to the Hospitals where said research was taking place.  Thank God the likes of Ron Davies has changed that outrageous situation and we might finally be looking at M.E. patients and not CFS patients.

I’m not saying that people with M.E. never improve, though it is rare.  I’ve improved for no good reason I can find.  One friend improved slightly using low dose Naltrexone, while for others it had no effect or made them worse.  Jen Brea, director of Unrest, has improved a bit with her treatment, though is still wheelchair bound and struggles to talk for long periods.  But none of us are cured and most of my friends have seen no improvement over the decades at all, despite trying every ‘treatment’ known to mankind.

I know I’m kind’ve wasting my energy writing this post, because anyone with M.E. reading it thinks that they will be the one that is the exception to the rule.  They will find the cure that the millions of sufferers that have gone before them haven’t.  So I’ll wish them luck and say I’ll see them on the other side of their journey, still sick, financially poorer, even more exhausted but wiser and finally at a place of peace and acceptance.

 

Clueless

I get quite a bit of flack on my blog for dismissing currently popular theories on what causes or cures diseases, in particular that certain foods make us sick or that we can eat ourselves well.  Food, and the effect it has on our body, just isn’t that simple.  For example, we were told for years that saturated fat was bad for us, and then along came coconut oil which despite being a saturated fat actually lowers bad cholesterol and raises good, blowing the saturated fat theory out of the water.  And as I’ve mentioned before on my blog, my parents eat an almost identical diet yet my Mum’s cholesterol is high and my Dad’s is low so there’s obviously more at play than simply what they’re putting in their mouths.

When I developed M.E. I was working on a luxury cruise liner and as an officer I ate in the passenger dining room.  Breakfast was a smorgasboard of wonderful fresh fruits and my evening meal was fit for a king though I opted for salads much of the time as I didn’t want to gain too much weight.  I’m pesco-vegetarian and have never been a big drinker.  In addition I was a regular at the on-board gym and spent many of my evenings dancing the night away.  I lived as “healthily” as it is possible to do yet I still got sick.  My booze guzzling, overweight, smoking, “unhealthy” colleagues did not.  How freakin’ unfair is that?!

My Mum has smoked since the age of 14 and hasn’t exercised for as long as I’ve been alive.  As a consequence her lungs are fucked, she has had a heart attack and her kidneys are packing up.  But despite being an alcoholic for the past 6 years and doing nothing to help her situation, she is nearly 80 and the tumour the doctors found on her lung turned out to be benign.  Her sister, on the other hand, never smoked, didn’t drink, walked everywhere as she couldn’t drive and cooked every single thing she ever ate from scratch yet she died from cancer at the age of 78.

My cousin, the eldest daughter of said Aunt, is 60.  She met her husband when she was a teenager and they have been blissfully married for 40 years.  Neither smoke, rarely drink, are slim, walk daily in the beautiful clean air we have here in the Lake District, her husband is a regular at the gym and my cousin used to teach home economics so is an accomplished cook and like her Mum has always made every item of food from scratch.  They own a second home in the South of France so took early retirement in their fifties and now spend 6 months of the year relaxing by the pool in the sunshine.  You couldn’t find a couple of who live a happier, healthier lifestyle yet both have cancer.  My cousin breast cancer and her husband chronic leukaemia.

In addition, my cousin has zero Vitamin D levels.  How can a person who spends 6 months of every year lying in the mediterranean sun have absolutely no vitamin D when current guidelines tell us that spending just 15-30 minutes each day outside will give us all the Vitamin D we need?  It’s clearly not quite that simple.  Disease, in general, isn’t quite that simple.

My Step-Dad’s Mum moved into sheltered housing at the age of 56, after which she didn’t exercise a day in her life.  She weighed 20 stone (300lbs) and had diabetes, yet despite having a regular blood glucose level of 16 (should be under 7) she didn’t really have any problems and ate whatever the hell she liked.  She lived until she was 103.  103!  And only entered a care home when she was 99.

Much is spoken these days about genes and genetic susceptibility to disease but it’s a very complex area.  I came up negative for the genes associated with Dupytrens Contracture, for example, yet already have a Dupytrens nodule in the palm of my left hand.  DC affects 4 times as many men as women, yet I am female.  When it does affect females it tends to be mild, yet my Mum has severe DC in both hands and has already had three unsuccessful surgeries.  It usually affects the right hand, yet I have it in my left.  So in my case everything I read about DC has turned out to not apply.

My Mum has Ehlers-Danlos, yet has never had the pain or dislocations from which I suffer.  I’d also bet my house on the fact my Brother has the EDS gene yet has never had a single symptom.  If we all have the same genetic disease why is one person crippled with it and another not (and why does the crippled person have to always be me?!).

If exercise staves off Dementia why does my Dad, who until 4 months ago walked the fells every week and who has the blood pressure and cholesterol of a 21 year old, have it?  If eating broccoli staves off Dementia my Dad should never have developed it – he loves the stuff.  If keeping your brain active staves off Dementia why hasn’t it helped my Dad, who regularly does the crossword, has the best long-term memory of anyone I’ve ever met and can work out the maths of a dart board before I’ve even turned my calculator on?  My Mum, of course, has slobbed infront of the telly for the past 15 years smoking and drinking yet her brain is still as sharp as a tack.

As far as I can see we are fairly much clueless as to what causes disease.  We don’t even know why if you put 3 people in a room with the cold virus 1 won’t develop a cold, 1 will catch the cold and 1 will get pneumonia.  If drinking to excess, smoking and not exercising kills you my Mum should have been dead twenty years ago and her sister should have lived another thirty.  Smoking destroys collagen so you would think that my Mum’s EDS would be much worse than mine as a non-smoker, yet the opposite is true.

If I were healthy I swear I would just live however the hell I liked.  I would drink and eat whatever I fancied.  I would exercise if I wanted to and not if I didn’t.   It appears to me that health, for the most part, is as much a game of Russian Roulette as anything we do or don’t do.  Life is too short to live it denying ourselves pleasure or doing stuff because we think we should, not because we enjoy it (does anyone really enjoying spinning classes or doing 30 crunchies before breakfast?!).  Now where did I put the humongous box of Wine Gums Santa so kindly left under my tree……….