Tag Archives: mast cell disease

Don’t believe the lists!

I’ve been diagnosed with Histamine Intolerance (HIT) and Mast Cell Activation Disorder (MCAD) for over 5 years now and I forget that people newly diagnosed don’t have the same level of information, and skepticism, about the diseases as myself.  So this post is aimed at the newly diagnosed, or those who think they might have problems with histamine.

I’m only going to talk about diet, because that’s how I control my HIT – I don’t take any supplements because my mast cells hate supplements.  MCAD isn’t controllable by diet because mast cells can be triggered by just about anything in the environment, such as hormones, stress etc, but many people with MCAD follow a low histamine diet to reduce their bodies histamine load.

There is loads of information ‘out there’ on histamine in foods and for the most part it is absolute rubbish.  Sorry to be the bearer of bad news, but there is currently no lab which is testing the histamine content of foods.  None.  I urge you to read my Histamine in Foods: the Evidence page which outlines the situation.  Most of the current lists rely on one paper for their information, but it is years old and has been discredited.  Sadly, however, most of the histamine food lists online use this research paper as their source without checking its validity or accuracy.  The histamine content of food is simply chinese whispers – it is not based on fact, no matter which list you look at (including the one listed here on my blog).  Bare in mind that many popular online histamine sites are making money out of their books and online courses – they’re not suddenly going to turn round and say ‘oops, turns out everything I’ve been telling you for the past 5 years is a pile of poo’.  I don’t make a bean out of my blog and am just trying to be objective.

If you’re following a low histamine food list have you checked where the author has gleaned their information from?  I mean, really checked it?  Have you followed the research links (if they’re available) and actually read the research?  How old is it? Has it been replicated by another research group or testing facility?

The problem with the histamine content of foods is that histamine formation and degredation depends on how old the food is and how it’s been stored.  Just because a lab in Norway has found a level of, for example, 5mg/kg of histamine in yoghurt doesn’t mean the yoghurt you’re eating contains that amount because you have no clue how the milk the yoghurt is made from was stored or handled.  This is why the only accurate way to test for histamine in the food we eat is by actually testing the food we eat – which is why I’m so excited by the home testing kit I’m hoping to try next month!

Information on the histamine content of food is changing all the time.  The most recent reseach paper to come out about the histamine content of foods was undertaken by the University of Barcelona and focused on the histamine content of non-fermented plant based foods, including fruits, nuts and legumes.  It’s a really good paper and I urge you to read it.  Hardly any information on the histamine content of plant-based foods is available, and this new research found that the only products of plant origin with significant levels of histamine were eggplant (aubergine), spinach, tomato and avocado – which is good news and makes most plant based foods fairly safe in histamine terms.

Most of the online foods lists say people with MCAD or HIT should avoid citrus fruits, berries etc., yet this new research demonstrates that no fruit is high in histamine.  The food lists say that strawberries, for example, may not be high in histamine themselves but liberate histamine in our bodies.  It’s tosh.  There is no way of testing whether or not any food liberates histamine stored in our mast cells and you need to be questioning the author of any such information on how they’ve reached this conclusion.

The histamine content of wheat products, eg bread and pasta, all showed undetectable amounts of histamine.

The authors state that storage temperatures are the main contributor to histamine formation in plant based foods, so the rule is to eat plant foods within a day or two of buying them and to keep them refrigerated.

The way we cook food can also affect histamine formation.  It appears that boiling vegetables decreases histamine, sometimes quite dramatically, as the histamine transfers to the cooking water.  In a very small study frying, however, increased histamine (though this hasn’t been replicated in other studies as far as I know).

Having said all that, although the only plant based foods which were found to be high in histamine were eggplant (aubergine), spinach, tomato and avocado, some foods were found to contain other biogenic amines such as putrescine and spermidine.  How much these other amines are implicated in HIT is completely unknown, so how much you want to worry about them is up to you.

The conclusion of the research was that: “the exclusion of a high number of plant-origin foods from low histamine diets cannot be accounted for by their histamine content” which is what I’ve been saying for a long time now.  We are cutting out nuts, fruits, wheat and most veg from our diets for absolutely no good reason!  The authors do conclude that some of these foods contain putrescine and if you have an issue with them it might be because of that, but the foods aren’t high in histamine and if anyone tells you they are they’re fibbing.

 

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Misbehaving Mast Cells

I woke up at the weekend with huge hives on my butt.  I’d been expecting them.  Stress is one of my biggest mast cell mediator triggers and I’ve been under a shed load of stress in recent weeks (the reason why stress causes mast cells to degranulate is briefly covered in my Canary Post).

I received my MCAD diagnosis four years ago now and I’ve come to recognize most of my mast cell triggers.  Some, like pollen release in Spring, I can do nothing about although I take precautions to minimize the effects like wearing sunglasses outdoors and not leaving all my windows wide open, while others like high histamine foods I can more successfully avoid.  Acute stress, like my Mother being suddenly unwell, is something we all have to deal with at some time or another and something we just have to manage as best we can.  While my Mum was hospital this included days where I stayed at home and rested instead of visiting her (the guilt was awful, especially as it meant my poor Dad, who was also exhausted and stressed, had to visit twice in one day), making sure I still ate well (tricky as I can’t just buy a sandwich or meal out, so had to be super organized to always take home-made food with me) and finding ways to chill out despite the chaos (I find listening to talking books relaxing and non-taxing and was something I could do on my long drives to and from the hospital).

There are two types of mast cell activation: acute and chronic.  Acute mediator release is severe and blatantly obvious and thankfully only happens for me when I take certain most drugs.  Chronic mediator release can be much more tricky to detect and it took me a while to know the signs that my mast cells were misbehaving.  Symptoms will be different for all of us, but my tell-tale signs of chronic mediator release are:

  • Insomnia.  I’m exhausted and go to sleep fine, then wake up several times in the night and struggle to get back to sleep.  This is usually accompanied by parasomnias, in my case nightmares, sleep walking and sleep writing.
  • Needing to pee more, particularly during the night.  When my mast cells are calm I never need to get up in the night for a wee, but when they are releasing I get up between 2 and 6 times.
  • Feeling either unnaturally exhausted like I’ve been drugged, or unnaturally hyper.  I prefer the hyper cos I get all sorts of jobs done with energy I don’t usually have 😉
  • Sluggish bowel.  I usually go for a poop every day after breakfast (I know, TMI 😉 ) but when my mast cells are playing up my bowel stops working.  This is the opposite to most people’s experience of diarrhea.
  • Having a bunged up nose.
  • Sneezing for no reason.  And I really mean sneezing, which can go on and on……and on.
  • Back pain, which feels muscular in nature.  One of the biggest surprises of starting a low histamine diet was a reduction in the back pain I’d had since childhood which, when my mast cells are releasing, comes back.
  • Increased joint pain, which again for me feels muscular.  When my mast cells release, the mediators definitely make my collagen more stretchy/weak which makes the ligaments which holds my joints in place painful.
  • Itchy skin and scalp, without a rash.
  • Nausea.
  • Muscle cramps, particularly stomach.
  • Retching/oesophageal spasms, but not vomiting.
  • Increased reflux.
  • Increased cough and chest tightness, which may be due to the increased stomach acid mentioned above, or may not (I don’t have asthma).
  • Itching on the outside of my ears, which sounds trivial but drives me bonkers.
  • And eventually hives on my butt, which are always the last symptom to appear.

The biggest tells for me are the insomnia, peeing during the night and sluggish bowel which are sure signs my mast cells are having a hissy fit.  I can usually identify a reason and do something to change the situation, though there are times they misbehave for no apparent reason which is scary as I then have no way of controlling them.

Triggers will again be different for all of us, but my obvious ones are:

  • Drugs, which as far as my mast cells are concerned are The Devil.
  • Stress.
  • Doing too much.
  • High histamine foods.
  • Menstrual and menopause hormones.
  • Seasons – Autumn being particularly bad (which isn’t mould related because we have mould all year round here) and a warm, sunny Spring usually being particularly good despite the fact I’m allergic to spring pollens (work that one out!).
  • The metal Nickel, which gives me eczema.

I’m sure I probably have other triggers that I haven’t identified, but they can’t be that vital if they’re not causing me easily recognizable issues.  I definitely have a problem with being too hot or cold, and having a hot bath or shower brings me out in an itchy rash but I love my baths and they help my joint and muscular pain, so much so that I’m willing to put up with some transient itching which usually only lasts twenty minutes or so.  Being too cold, on the other hand, makes me feel fluey and unwell and gives me horrendous brain fog which can last until the next day.

Due to my very severe drug allergies I, for the most part, don’t have the option of managing my mast cell disease with medication.  My management strategy therefore consists of:

  • Removing or reducing the trigger, which is sometimes do-able and sometimes not.
  • A wide, balanced, but low histamine, diet which is organic/chemical free whenever possible.  This has been my literal life saver.
  • Taking H2 antihistamines for stomach acid – I’m currently not reacting to Famotidine though this may change in the future.  I have actual panic attacks worrying about becoming allergic to my H2 meds because I have such severe GERD that without them the pain makes me suicidal.
  • Taking small amounts of H1 antihistamine in Spring for hayfever symptoms – I have issues with H1s, sometimes reacting to them and sometimes not, so I avoid unless absolutely necessary.
  • Trying to get enough rest and not over-do it.
  • Trying to do some gentle walking every day, which due to my EDS and M.E. isn’t always possible but is beneficial on many levels when I can manage it.

I look on with envy at people who can tolerate Sodium Chromoglycate, supplements, Benedryl and all the other popular mast cell treatments.  Trust my mast cells to have a particular dislike for the very things which would ultimately lead to their demise – they’re wiley buggers I’ll give them that.

Recognizing my mast cell triggers has given me a feeling that I’m more in control of the situation, though whether this is actually true or not is open for debate 😉  The one thing I’ve discovered about mast cell disease is that it’s an ever changing entity and the whole shebang can alter literally overnight.  So, like any other aspect of life, I just take it one day at a time and am just thankful when I wake up and today is a good day 🙂

 

Book Review

‘Never Bet Against Occam’: Mast Cell Activation Disease & The Modern Epidemics Of Chronic Illness and Medical Complexity by Lawrence B. Afrin, M.D.

In March 2016 the first ever medical book on Mast Cell Activation Disease was published by world leading American mast cell expert and hematologist/oncologist Dr Afrin.  It’s a weighty tome, over A5 in size and 400+ pages long though the actual book only takes up the first 200 pages, with the latter half devoted to an extensive medical dictionary.

Although it’s supposedly aimed at patients, with witty titles like ‘Well, we’re in a world of s**t now: gastrointestinal findings in MCAS’ you will struggle to read this book without a good education, basic knowledge of medical jargon and a grounding in mast cell disease.  It is not for the faint hearted or the severely brain fogged!  Having said all that I had some light-bulb moments which I’ll outline below and it was incredibly reassuring to read about my disease from someone who truly gets it.

The book covers every aspect of MCAS, from rashes to thinning hair, lung problems to bladder pain, hormones to blood findings and everything inbetween.  There is an extensive chapter on diagnosis & gene testing, and an even larger chapter on treatment.  Of course, none of the diagnostic tests are available in the UK and neither are many of the treatment options which is frustrating as all hell and the reason I don’t frequent any MCAD forums or groups – hearing about all the testing and treatments American patients receive is just depressing and makes me very despondent.

The book is way too large to cover in detail, but I thought I’d share some of the sections which particularly stood out for me:

  • “Hair (especially on the scalp) often becomes brittle and dry and patients often go through cycles of increased hair thinning and loss”.  See this post regarding my own alopecia.
  • “The nails become brittle and weak and don’t grow normally.  They often acquire longitudinal ridges…..”   See this post, which explains my nail growth problems and weird longitudonal ridges which maybe aren’t so weird after all!
  • “MCAS patients also often cause their dentists fits because of how much dental and peridontal deterioration occurs, even when the patient has always been good about attending to dental hygiene.”  I’m going to print this bit off for my Dentist as he constantly tells me I’m brushing my teeth too hard which is why my gums are receding early, and I keep telling him I do not!
  • “….one of the end effects of mast cell disease’s impact on the immune system is impaired healing”.  Coupled with the delayed healing of Ehlers-Danlos it’s a wonder my wounds knit together at all!
  • “….Fibromyalgia is a diagnosis that MCAS patients have frequently acquired at some point along their diagnostic paths……….random skin biopsies in fibromyalgia patients have been found to harbor roughly ten-fold more mast cells than random skin biopsies from healthy people.  This of course doesn’t come anywhere close to proving that fibromyalgia is a variant of MCAS but it’s nevertheless an interesting observation.”
  • On the subject of diagnosis: “Are there ‘odd’, ‘strange’, ‘weird’, bizarre’, ‘unusual’, ‘mysterious’ symptoms and findings? (….many patients with unrecognized MCAS have long had chart entries incorporating exactly these words).”  When I was having seizure-like episodes and “bizarre” (what I now know to be anaphylactic!) reactions to all drugs my GP told me not to tell any other doctor as they’d think I was mental 😦  So I kept my symptoms quiet for nearly a decade, putting my life at risk in the process.

The book contains a few pages on H-EDS.  Dr Afrin states “here’s the really weird thing about type III EDS: it’s actually not a genetic disease – at least, not as far as decades of research into connective tissue genes and proteins have been able to discover………..it might be the case that, for at least some EDS Type III patients, the problem lies not in the normal assembly of allegedly mutated connective tissue proteins into connective tissue that functions abnormally but rather lies – due to aberrant mast cell mediator release – in the abnormal assembly of entirely normal connective tissue proteins into connective tissue that functions abnormally?  I’m going to really stretch the bounds of how far one should anologize by saying this, but I’ll say it anyway: could EDS type III be a ‘connective tissue autism’ in which normal connective tissue proteins are connected in abnormal ways vaguely akin to how in autism normal brain cells are connected in abnormal ways (possibly, in some patients, as a consequence of abnormal mast cell mediator release)?”.

I admit I found  his opinion on H-EDS difficult to read.  I, and many other people, fought a very long (in my case 40 year), frustrating and difficult journey to have our connective tissue disorder recognised and to have the diagnosis questioned is tough.  There is also the pedantic point that there is now no such thing as “type III EDS” it is called EDS-hypermobile type and for another if it’s not genetic how come I inherited mine from my Mum?  He may turn out to be right that H-EDS is a form of Mast Cell Disease rather than a genetic mutation of connective tissue but I know many H-EDS+MCAD sufferers who are having their MCAD treated with little, or no, effect on their EDS which has to raise questions.  Of course, I’ve also heard from supposed H-EDS sufferers who say that treating their MCAD “cured” their hypermobility – my answer to which is that they were possibly misdiagnosed and didn’t have H-EDS to start with (H-EDS is so much more than simply being hypermobile).  The truth is no-one currently knows the origin of H-EDS, though the inheritance factor is undisputed.

In contrast to the section on H-EDs, I found the chapter on genes mirrored my own thoughts on the subject to a T.  “We’ve been hearing for several years now that the era of genomically personalized medicine is almost upon us, a time when…….we will be able to determine anybody’s complete genetic code which – and here’s where we wave our hands in a magic gesture – will tell us all that’s wrong with us now and all that’s likely to go wrong with us.  Yeah, right.  If only……..  A dollop of your saliva….produces pages and pages and pages (of information)…..you have Mutation code A, which puts your risk for Disease B at Level C….and so on…..You forward this information to your doctor……and he says ‘there’s a lot of stuff here, and the truth is, we really don’t yet know what 99.99% of this stuff truly means and there’s nothing to be done about it at this point anyway’.  And he’s exactly right.”

Amen to that.  There are people on forums on the internet who seem to spend every waking moment of their lives analysing their genetic data.  They’re obsessed.  And for what, exactly?  Having a specific gene mutation does not mean a damn thing and certainly doesn’t determine your risk of developing a particular disease, just like not having a gene mutation doesn’t mean you have a clean bill of health.  My 23andme results said I didn’t flush (wrong), have a tremor (wrong), have migraines (wrong) or have Dupytrens Contracture (which may or may not be wrong, my Mum developed hers in her 60s and her sister and brother in their late fifties, so I’m not yet old enough to know if I’ll develop it too).  No gene has been associated with migraine disorder in any even, so how on earth the company can say you do not have mutations linked to migraine is utter bollocks.  However, there are exceptions to the rule, for example the BRCA gene which increases the likelyhood of female related cancers exponentially.  In mine, and Dr Afrin’s opinion, gene testing is going to become incredibly important to health care in the future, but we’re just not there yet.

Having said all that, there is some interesting information on KIT, thought to be the most important genetic controller of mast cell activity, in Dr Afrin’s book that’s well worth a read.

If you have a good general understanding of medicine, and mast cell disease in particular, I can highly recommend this book.  If you don’t, you may struggle.  Available in hardback from both UK and USA Amazon: UK cost approx £13.

 

Dermographism

Also known as Dermatographic urticaria, Dermatographism, Dermographia or Dermatographia and commonly called “skin writing”.

I’ve had Dermographism for as long as I can remember.  So I was either born with it (most likely) or developed it in infancy.  I had absolutely no idea that other people didn’t have it until I was 45 years old because it had always been normal for me.  How crazy is that?

According to Wikipedia: Dermographism is “thought to be caused by mast cells in the surface of the skin releasing histamines without the presence of antigens, due to the presence of a weak membrane surrounding the mast cells. The histamines released cause the skin to swell in the affected areas.  This weak membrane easily and rapidly breaks down under physical pressure causing an allergic-like reaction, in general a red weal (welt) to appear on the skin. It can often be confused with an allergic reaction to the object causing the scratch, when in fact it is the act of being scratched that causes a weal to appear. These weals are a subset of urticaria (hives) that appear within minutes, in some cases accompanied by itching. The first outbreak of urticaria can lead to others on body parts not directly stimulated, scraped, or scratched. In a normal case, the swelling will decrease with no treatment within 15–30 minutes, but, in extreme cases, itchy red welts may last anywhere from a few hours to days.”

I couldn’t have put it better myself 😉

I develop dermographism when I’m scratched, or sometimes when my skin is subjected to pressure.  I cope with pressure better than scratching and can wear elasticated clothing and socks without problems, so long as they’re not too tight.  My biggest issue in respect of pressure are the braces I use for my joints.  They have to be tight in order to support the joint but on the whole they’re simply too tight for my mast cells and cause welts to develop.  The welts itch me like a son-of-a-bitch and of course if I scratch the scratch itself becomes a welt.  Joint braces = histamine hell.

Scratches on my skin cause my dermographism to go bonkers but, unlike the welts caused by pressure, these welts don’t itch.  It’s bizarre.  I thought I’d demonstrate my dermographism by scratching the word “hi” on my arm with the end of a pen.  Here’s the instantaneous result:

Photo of Dermographism on the armI’ve never timed how long it took for the hives to go down, so as an experiment here’s the dermographism after 2 hours:

Photo of dermographism on the armAnd again after 4 hours:

Photo of dermographism on the armAfter 7 hours the swelling had gone but the red mark of the word “hi” was still there when I went to bed that night (though had gone by the next morning).  As I said though, no itching and luckily the hives are always contained to the area of the scratch and don’t seem to set off any kind of histamine chain-reaction elsewhere, yayyy!

My dermographism isn’t confined to pressure and scratching though.  When I had a 24 hour heart monitor done in 2014 I had to wear pads stuck on my skin with electrodes attached to them.  My skin can be iffy when it comes to glue (some plasters and tapes make me itch like mad) and this was the reaction to one of the pads on my chest:

Photo of dermographismThe itching nearly drove me to distraction and, not only was there an oval shaped hive from the pad, but weird criss-cross hives all the way round it too – no clue what they were, but oh boy was I glad to get those damned things off me!

I don’t take any kind of medication for my dermographism.  I scrape my skin 10 times a day (being thin-skinned due to EDS) but luckily the scratches don’t itch so I feel no need to treat them with anything.  It would be great to be able to wear proper joint braces but, as I’m allergic to anti-histamines, taking daily medication to counter-act the pressure hives isn’t really an option.  So I just don’t wear anything tight – problem solved 🙂

I wish I’d known a very, very long time ago that dermographism is an indicator of Mast Cell Disease.  Mine is classed as fairly severe and unusual that it presented from early child-hood.  Obviously as MCAD is now linked to Ehlers-Danlos Syndrome and EDS is present from birth I personally feel my MCAD has also been present from birth and simply worsened in middle age as did my EDS – it’s no coincidence that my MCAD exploded less than 2 years after my EDS exploded.  Other people, however, acquire dermographism in later life and of course not all people with dermographism have EDS.

I wish I’d known as a kid that my skin wasn’t like everyone else’s.  I could have added Skin Etch-a-sketch to my list of party tricks and I’m sure when I was 9 that would have been super cool.  Not so cool though to have thong induced hives up the crack in my arse.  Who the hell invented thongs anyway – they’re like dental floss for your butt! 😉

I’m still baffled

This week I had yet another delightful comment on my Recipe page basically saying that my site was a joke.  How on earth can I call my recipes low histamine when they contain mushrooms, chillis and lemon juice?! (with an excalamation mark just to shove the point home).  I was not amused, particularly as the writer had obviously not afforded me the courtesy of actually reading my blog.  The Read This First! page in the Low Histamine Food section, and the links contained therein, explain the information my food choices are based on and if you can’t be arsed to read it before mouthing off you’re just being  rude.

I’ve also had a, thankfully much nicer and more polite, comment from SIGHI (the Swiss Interest Group on Histamine Intolerance) informing me that their cookbook has now been translated into English.  I had a look through the excerpt on their website and it’s obviously taken a lot of hard work and is very professional – I’ll add the details to the Links & Resources page when I get the chance.

If you look at the start of the cookbook it lists allowed and excluded foods, some of which differ from those on other low histamine food lists, the list I follow included.  The whole histamine in food thing still baffles me and I know baffles most of you all too.  Here’s the rub: I can find hardly any research on the histamine content of foods, the exception being fish where scombroid poisoning is well documented.

The list I follow was written by Dr Joneja, a world leading researcher on histamine intolerance, so at least has some validity.  The person who told me this week that my site was laughable because I included mushrooms so far hasn’t produced any research to back up their claim that fungi are high in histamine. Barcelona-based nutritionist Adriana Duelo, whose work is regularly submitted to the prestigious Spanish Society of DAO Deficiency  (of which she is also a member) , has tested mushrooms however and found they contain zero to 1.8mg/kg of histamine which is about the same as fruit juice and less than swiss chard or rice.  Having said all that, some people can’t tolerate mushrooms just like I can’t tolerate apples, which are also very low in histamine.

And therein lies another rub: we don’t all have the same immune system malfunctions.  There are people with allergies.  There are people with intolerances, eg to tyramines, salicylates, oxalates, nightshades, gluten, lactose.  There are people with low or inhibited DAO &/or HNMT.  There are people with mast cell disease.  And there are people with immune system problems which don’t fit any of the aforementioned categories.  And although histamine is implicated in all of these illnesses the mechanisms by which it causes symptoms, and the treatment needed, will differ widely.  It is also, in some cases, only a small part of an overall immune system picture.  In MCAD, for example, when mast cells degranulate they produce around 30 mediators – why do we only focus on histamine?  And why do we mainly focus on food, when just about anything can cause mast cell degranulation in MCAD, including the weather, emotions, lack of sleep, hormones, etc. etc.?

To complicate matters further, many people mix low histamine food lists with other issues.  SIGHI exclude wheat on their diet for example, when there is no evidence that wheat is high in histamine.  Wheat may, or may not, be inflammatory and excluded on an anti-inflammatory diet or people may be intolerant to gluten but that still doesn’t make it a histamine rich food.

I’m hoping to have time over the holidays to update my website a bit, including writing a new page tackling these very complex issues.  To be honest though, the more I’ve learned over the last 3 years the more I suspect any low histamine food list.  Who exactly has tested cinnamon, curry powder or nutmeg for its histamine content?  And how on earth is it even possible to test whether a particular food liberates histamine once it’s been ingested?   Are fresh foods always lower in histamine than dried?  Dried oregano, for instance, is miles higher in mast-cell stabilizing luteolin than fresh oregano.  If pumpkin is high in histamine what about related vegetables like squash, or other root vegetables like carrots or turnip?

I can see the logic, if not the research, to back up claims that aged and fermented foods will be high in histamine, eg. aged cheeses, cured meats and dried fruits but where is the science that food colorings are high in histamine (not that I’d ever want to eat artificially coloured food but where is the histamine connection)?

I’m almost certain I inadvertently still eat things which are high in histamine.  I’m also equally as certain that I’m avoiding some gorgeous foods for absolutely no good reason.  And on top of all that I know for sure that histamine in food is only a tiny part of my very complex health issues and I’d love more research on all the other aspects of mast cell mediator release.

I’m just sharing rambling thoughts in this post really and, as I said, will try and put together a more considered and informative page in the near future.