Tag Archives: histamine intolerance

Weekly roundup

I have had a horrendous few days.  The depths to which people can be vicious and vindictive shocks me, especially when they are grown adults.  I have alternated all week between being  angrily defiant to being a weepy, crumbling wreck – I am too ill for this crap which is wholeheartedly undeserved.  I wrote about the situation in my last post so I won’t harp on.

As if being slandered and publicly humiliated weren’t bad enough, I have had one of the worst colds in years this week.  It started with an 8 day migraine, then came razor blades every time I swallowed and three days later the sneezing, streaming and coughing began and to add insult to injury I still have a banging head.  Due to that, and the almost unbearable stress of recent events at my Camera Club, I have barely eaten or slept for days.  The Pheasant splattered by a car on the road outside my house feels better than me today.

I have felt so poorly I have done nothing and seen no-one.  I speak like Donald Duck, cough like a 40-a-day chain smoker and you can image what massive stress + a virus has done for my M.E.   Consequently I really don’t have much to tell you.

The only bright light on the horizon is the news that I won another photography medal this week at an international Salon.  Silver, for my new picture called ‘On the shelf‘.  My friend told me she now has congratulations fatigue.  Another medal?  Yeah, whatever……. 😀

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Weekly roundup

This week has been physically tough.  My period arrived (I swear I’ll still need sanitary products when I’m dead cos Aunto Flo is showing zero signs of buggering off!) and I am currently on day 7 of a migraine.  My knees and elbows are having a pain flare for reasons unknown and I’m still so brain fogged/exhausted I feel like I’m drugged.  But other than that I’m good 😉

On Monday I took my Mum through to the city to visit the hearing aid clinic at the Hospital.  She wears two hearing aids but they simply won’t stay in her ears and she’s already lost one which dropped out as she went round the supermarket.  It turns out she has very narrow ear canals and even the smallest aid is too big, so they’re custom making her ones which sit inside the ear itself instead.  As my Mum rarely gets out of the house we made a day of it, having our lunch out and a tootle round Matalan as it’s all on the flat for the wheelchair and has a good sized disabled changing room.

The rest of the week I’ve been trying to organize repairs to my car port, the back of which is made of old wood which has totally disintegrated.  All was going fine until we discovered asbestos and then it was on to plan b!  When you have M.E. you barely have the energy to get dressed let alone for events to go belly up.  So now the job is much more complicated than I expected and will take twice as long – of course it will, because Mr Sod has it in for me.

As I wrote about in this post my Dad and I made a last minute trip to the Hospital in Newcastle on Friday.  I was expecting them to finally say his neuropathy was idiopathic (ie no explanation could be found) and to tell him he just has to learn to live with it, however they’ve said that idiopathic neuropathy isn’t usually progressive and severe like my Dad’s so they are still searching for a cause, which is great news but means yet more 180 mile trips to the Hospital for tests and appointments which nearly kills me and takes a week to get over.

Yesterday I found out I’d won two more trophies for my photography in an annual competition which involves all 52 camera clubs across the north of England 🙂  I genuinely wasn’t expecting them so am tickled pink.  However, my joy was momentarily marred by the news that a smear campaign has now been started against me by the bullies at my Camera Club who are saying I’m writing shit about my Club on Facebook.  It is blatantly untrue.  I have written one post on Facebook about their behaviour and the way they have treated me, in a measured non-ranty way and mentioning no names, but would never in a million years ever trash my club because I’ve loved being a part of it.  The sad part is, people who aren’t even on my Facebook and haven’t read the post are believing the bullies 😦  This is what bullies do when their behaviour is exposed – they deflect negativity away from themselves and on to the victim, who eventually ends up the bad guy.  That people fall for this bollocks is really fucking disappointing.  When I find myself questioning why this situation has come about I like to read this quote and remember it’s not about me, it’s about the bullies’ inner demons:

Today I am looking forward to meeting my bestie for lunch and a catch up, but first I am eager to take the mutt out for his morning constitutional.  Spring has officially sprung here in the UK and there is no prettier place on earth.  The hedgerows are covered in fluffy blossom, daffodils nod in the breeze, birds are busily nesting, I saw my first butterfly yesterday even though there is still a sprinkling of snow on the fells and as Bertie and I wander by the river, hoping to catch a glimpse of wild Otter, I am thankful every day to live where I do 🙂

 

 

Weekly roundup

Monday was a big day.  Not only did I have my scan, which thankfully showed that no cancer was present in my lymph nodes, I then had to come home to my local health centre for a smear test.  Now, I know they say smears are “uncomfortable” for a few minutes however that’s not been my experience.  I haven’t had children, nor had sex for a decade, and when she inserted the speculum it was a bit like trying to shove an elephant through the eye of a needle.  The burning, stinging pain eventually became unbearable and, being as though she couldn’t get the ginormous thing in anyway, we both agreed it wasn’t working.  Thankfully she had a smaller, old-style, metal speculum which she tried instead and this time it was successful.   This is what always amazes me about health care – that a one size fits all approach is used.  How can a 5ft 2″ size 10 women whose never had kids have the same size vagina as a 5ft 6″ size 16 woman whose had 3 children?!  It’s the same with just about everything.  They use the same size endoscopy tube on me as they use on a 6ft 2″ man and I know who feels like they’re choking the most!

Wednesday was the last competition of the season at my Camera Club.  As the bullies now make me feel so uncomfortable I hadn’t been for a couple of weeks, but I didn’t see why they should deny me the pleasure of my favourite competition nights, so with some trepidation I went along.  Most of the Club didn’t know I was leaving and that that would be my last night, so I told several people who were all totally shocked – not only that I was going, but why.  I received lots of lovely comments, and hugs, and to cap it all I discovered that not only had I won the advanced print league this year I’d also won the advanced projected image league too.  I know it’s a bit childish, but I kind’ve wanted to stick my middle finger in the air and tell the bullies to go swivel on it 😉  They have chased away the best photographer in the Club to a rival Club, which clearly shows they don’t have the best interests of their Club at heart and the fact they are all now on the committee, in fact one has put herself up for Vice Chair, stinks.

Toda is Mothering Sunday, so I’m taking my folks out for lunch.  For the past several years I’ve absolutely dreaded events like today, as my Mum would be drunk before I even got to the house and either be finding everything hilarious so having a conversation over lunch would be impossible, or being a total bitch so I’d have a knot in my stomach the entire time as she whinged about everything and constantly bullied my Dad.  These days she isn’t drinking quite so much, but she is still drinking and I have no clue how inebriated she will be when I pick her up.  I’d rather be doing something else it has to be said.

I am covered in hives from the stress of recent events, am peeing constantly and not sleeping – all signs my histamine bucket is full to overflowing.  My armpit, and elbow, are still swollen too and now I know it’s nothing sinister I’ve written to my GP and asked her for a referral on the NHS to a mast cell specialist.  Just because I have a rare disease and live in a rural area doesn’t mean I should receive no health care!  It’s been 6 years since I paid to see Dr Seneviratne for my diagnosis and I haven’t had any follow-up care at all, as in 2013 there were no NHS specialists seeing MCAS patients and I couldn’t afford any further appointments with Dr S privately.  However, things have definitely moved on and now there are some NHS immunologists who have taken an interest in us weirdos and are willing to see us.  Sadly, however, there are still none anywhere near me, so I’ve chosen Dr Ravi Sargur in Sheffield who seems to have a good reputation in the MCAS community.  Sheffield also now do mast cell testing on the NHS and have a dietician who’s versed in low histamine food 😮 .  Of course, it will take several months for my local health authority to agree to fund the appointment then for me to go on the waiting list to be seen, and it’s a 7 hour return train journey for me, but I don’t seem to have any other option – when your limbs start swelling up for no good reason it’s definitely time to get checked out.

Right, I must get up and cracking.  The clocks went forward last night so I’ve lost a whole hour.  I’ve recently been waking up every morning at 5.30am, so I thought it would be brilliant that it would actually now be 6.30am and at least the sun would be up but no such luck…………..I woke at 4.50am instead and couldn’t get back to sleep 😉

Weekly roundup

Monday I chased up my Dad’s CT scan results only to find the neurologist hasn’t even had them back from the scanning unit yet.  It will be a month on Tuesday.  FFS, if that’s how the emergency neurology clinic works I’d hate for him to be in the regular clinic.  He has been progressively ill for 15 months now and we are no further forward – no proper diagnosis and he’s had no treatment whatsoever.  The man can hardly walk now for heaven’s sake!  We all feel totally abandoned by the NHS.

Wednesday I found a soft lump under my left armpit – I was drying my hair and caught sight of myself in the mirror.   I ummmd and ahhhhhd over whether it really was a lump until I took a photo to show my Mum – it’s then I realized that, yes, it really was a lump and there seems to be swelling going up my arm above it.   So I have an appointment with my GP tomorrow for her to have a look.  Luckily I only had bloods done last week and all is fine, and I had a mammogram last year and that was also fine, so I’m sure it’s nothing to worry about.

My cough has improved a little bit now my H2 blockers have been increased but it’s still not gone.  I know I should be trying the stronger PPI meds like Omeprazole but I’m too terrified to try a new drug, so am happy to stay on the Famotidine for now and just live with the cough.

I made a big decision this week.  Although I love my photography, I’ve been unhappy at my Camera Club all year.  My lovely friend L left as she moved house and it’s really not the same without her as I don’t have any other close female friends there.  On top of that, two of the women have sent me to Coventry and I have absolutely no clue why they are no longer speaking to me.  It must be something drastic to deserve such treatment but I can’t think of anything I might have said or done for them to hate me so much.  And then there is the lady I’ve written about before who clearly has an issue with me and is so intimidating she makes me feel physically ill.  I go to my Club to de-stress not to add to it, so I decided this week that I will not be going back next year 😦  I may just take a break and then see how I feel, or I may decide to join another Club (not to blow my own trumpet but I’m a fairly good photographer and there’s one particular Club who have been gagging to have me for ages).  We finish in a couple of weeks then I have the whole summer to decide what I’m going to do.  I’m not giving up my photography though – no sodding way – and can continue with that whether I’m at a Club or not.  I’ve been really upset at the thought of leaving but now it feels like a weight has been lifted from my shoulders and that’s how I know it’s the right decision.  Yes it means the bitches have won, but I will be telling anyone who asks why I’ve left and who the women involved are, so I’ll leave them with the fallout from that.

Right lovely people, I need to get dressed and take the mutt out.  At least it’s not snowing this morning – we got caught in a freak storm yesterday, with hail so hard it felt like it was ripping the skin off my face, and returned home like a pair of drowned rats 😉

 

 

 

 

MCAD v HIT

I’ve noticed that whenever I talk about histamine and food here on my blog there is often confusion about the cause of food reactions, so I thought I’d write down my take on what’s happening.  I’m no expert, though, just a patient along with the rest of you so I could be well off the mark and I’m sure if I am someone will point it out 😉 .

I’ve had MCAD my whole life, but I have never reacted to foods.  I don’t have a nut allergy, or a gluten allergy, for example and have always been able to eat whatever I like.  I know I’m extremely lucky and many of my readers aren’t so fortunate.

I only started reacting to food when I was in my mid forties.  It came on gradually over a few years.  Bright red flushing after meals, increasingly itchy skin, hives which I’d never had before and out-of-control acid reflux.  Eventually in 2013 all hell broke loose and I started having anaphylactic reactions after I ate anything – severe palpitations, muscle spasms (particularly in my gut and back), weird head rushes that felt like I was having a stroke, anxiety (obviously the whole situation made me anxious, but the adrenalin fuelled anxiety from anaphylaxis is a different thing altogether), huge spikes then huge crashes in blood pressure, and eventually I’d just pass out.  It was terrifying and I had absolutely no clue what was going on.

To cut a very long story short I paid to see Dr Seneviratne at St Mary’s, who tested my DAO levels which were well below normal and he diagnosed me with Histamine Intolerance (HIT).  I’d never heard of the disease before so it was a steep learning curve!   Most foods contain small levels of histamine but some foods contain large amounts.  I don’t eat meat, and it turns out that many of the staple vegetarian foods I was eating every day (cheese, tinned tomatoes, soya beans, spinach, aubergiene) are all high in histamine :-/  Our bodies also produce histamine as part of the digestive process which is why I could react some days after drinking just water!   Fortunately we have a couple of enzymes in our bodes, DAO and HNMT, which ‘mop up’ the histamine we ingest so that it doesn’t cause us any problems.  For people with HIT, however, the enzymes are low or not working correctly so the histamine we eat in foods, and the histamine produced from digestion, accumulate in our bodies.  It’s a bucket effect – the more histamine we eat the more it builds up, and eventually the bucket overfills and we have a reaction.  No one specific food does this – it’s a cumulative effect.  I embarked on a low histamine diet and within 4 months my food reactions were under control – they hadn’t gone, but they were manageable.

There are various reasons why, if we suffer from Histamine Intolerance, our DAO and/or HNMT levels could be low.  For example, they can be reduced by taking certain medications, in which case if you cease taking the drugs the enzymes should return to normal and the HIT would only be temporary.  In my case, however, I have no idea why my DAO isn’t as it should be – I wasn’t on any drugs, my diet was very healthy and I hadn’t had any major tummy bugs or infections.  For me, HIT seems to be a permanent problem and if I veer off my low histamine diet the anaphylactic reactions come back within a couple of weeks 😦

Because histamine build-up in HIT is a bucket effect, I can often have no problems eating my breakfast in the morning but I can quite often react to my dinner in the evening, because histamine has accumulated during the day.  So I tend to eat my main meal at lunchtime and just have a small snack at night.

The food issues faced by HIT patients are very different to the food issues faced by many Mast Cell Disease patients.  In MCAD the immune system is treating totally normal foods as a foreign invader and mounting a defence against them.  It could be any food and will differ from patient to patient.   It is not a build-up and the reaction comes on soon after the food is eaten (although some people do have mild, delayed reactions which muddies the waters!).  In MCAD our mast cells release chemicals including, but not limited to, histamine which then gives us an allergic-type reaction.   Our immune system doesn’t care whether the food is high in histamine or not – it can react to any food it likes which makes treating MCAD food reactions much harder than treating HIT food reactions!   For some people with MCAD the immune system is so over-reactive they are left with only a handful of foods that are ‘safe’ 😦

It’s important to note that in MCAD the immune system doesn’t just react to food – our mast cells can react adversely to just about anything in our environment.  My biggest reactions are to drugs – my mast cells hate them – but I also react to stress, hormones, some smells, pollen, my dog and often my own emotions.

The biggest difference between HIT and MCAD, is that HIT is a food issue only Stop eating high histamine foods and it is possible to get your HIT under control.  In MCAD the issue is much, much wider and not eating high histamine foods won’t alter the fact your mast cells react to hairspray, the smell of bleach or your hamster.

MCAD and HIT are totally distinct and separate illnesses – you can have HIT without having MCAD, and MCAD without having HIT.  However, if you’re unlucky enough to have both they can definitely affect each other and I think that’s where much of the confusion around food comes from.  I have people comment on my blog that they are following a low histamine diet but still reacting to all sorts of foods and of course they will if they suffer from mast cell disease.  Following a low histamine diet will only stop reactions after eating if you suffer solely from HIT.  It might reduce your symptoms if you have MCAD, because if your body is already over-whelmed by histamine adding to the load by eating lots of food high in histamine probably won’t help the situation, but a low histamine diet most definitely won’t cure all your symptoms which are caused by factors other than food.  At least that’s been mine and my friends’ experience.  So it’s important to know whether you’re suffering from HIT, MCAD or a combination of the two because management strategies will be very different, and you can only know this if you are tested by someone knowledgeable in both diseases (easier said than done I know, especially in the UK).

As far as I know there is no data available on whether HIT is more common in the mast cell disease population.  It would be interesting to know if there’s a link, because every piece of the puzzle is important when we’re trying to work out what causes disease and how to treat it.

 

Weekly roundup

Apologies my roundup is a day late.  My period arrived yesterday and I felt like I’d been run over by a bus.  Are they EVER going to stop?!!

I am still feeling emotional following the committee meeting on Thursday.  It’s not rational and I have no clue why suddenly all the old feelings from my marriage and other events from my past have come back when I thought I’d dealt with them donkeys years ago.  It has taught me, however, that I simply can’t be around this one particular person at my Club whose energy I find toxic, so if she is going to be on the committee next year I will resign.  I go to my Club to escape the stresses of a difficult life, not to add to them.

Last week we had a mini heatwave 🙂  February is still winter for us in the UK and this time last year I was blocked in my village by snow for 3 days, however on Tuesday it was 20C and I was walking the dog without a jacket on!  Bonkers, but very welcome.  I used the opportunity to have a good clean out of my garage, which needs substantial repairs.  I now just have to summon up the energy to order the materials and arrange for someone to do the work.

It’s been 3 weeks since my Dad’s CT scan and we’ve had no results or a follow-up appointment to see the neurologist.  We first went to the emergency neurology Clinic on Christmas Eve and it’s now March, yet we are no further forward and he has received no treatment whatsoever despite the onward progression of his severe neuropathy.  I am SO frustrated and increasingly angry, and my poor Dad is at his wit’s end.  So once again I will be ringing the RVI to chase up my Dad’s care.   For 14 months now we have been trying to get a diagnosis and are getting nowhere.  In the meantime my Dad has gone from being able to walk 2 miles to being in a wheelchair.   It’s a sodding disgrace.

Bertie is a very lumpy dog, particularly as he gets older.  He has several warts and lipomas (fatty tumours) that don’t bother him so I just monitor them for any changes.  However, at Christmas I noticed he was constantly scratching his face and I found a little lump which looks different to the others.  I was at the Vets to have this checked on Monday, who doesn’t think the lump is anything nasty and put him on antihistamines to settle the itching, however if it continues to bother him he will have to have it removed.

More worrying is his recent change in behaviour.  On Christmas Day we were eating lunch at my parents’ house and we pulled some crackers.  We do it every year, but this time noticed Bertie had gone awol.  When we’re eating he’s always sat begging by the table for titbits, so the fact he’d done a bunk was unheard of.  We found him backed up in a corner by the front door, obviously petrified by the noise 😦  And since then he seems to be regularly sitting backed up in a corner by the front door when he’s at my folks’ house.  He’s had severe separation anxiety since I adopted him aged 2½ (he’s now 10) but has always been happy to stay with my parents who he absolutely loves.  He usually spends his time lying across the back of the sofa watching out the window and “guarding” his territory.  However, his spinal problem is worse now he’s older and he’s struggling to get up on the back of the settee.   When I’m there I lift him up, but when I’m not neither of my parents are strong enough now to pick him up so I’m wondering if being unable to get up on the sofa to see out of the window and “guard” is making him anxious?   It’s the only thing I can think of, but I’ll mention it to the vet next time I see her.

Speaking of the mutt, he’s currently sat on the back of the sofa in our house, woofing at anything and everything and waiting for me to get dressed and take him out, so I’d better get up and at it.  As I lie here I can see the Pennine Fells and they are covered in snow from head to toe – looks like the heatwave is over and I’m going to need my thermals 😉

 

 

 

 

One In A Million

Overnight my blog received its 1 millionth visitor.  It’s gobsmacking to me.  Seriously gobsmacking.  Here I am in the middle of nowhere, surrounded by sheep and farmers, spending 17 hours of every day in bed feeling like road kill and over a million people have read something I’ve written, including someone from Vatican City and one of the world’s leading MCAD doctors.  Mind-seriously-blown.

I started my blog because I felt like I was the only person in the world to be diagnosed with not only M.E., but also hEDS, HIT and MCAD.  I had no clue there were thousands of other disease-triad sufferers out there and finding you all has helped me feel less alone.  And there have been many times that I have felt utterly, utterly alone not least because I’ve lived on my own since I developed ME back in 1994 and have never had anyone to care for me no matter how sick I’ve ever been.

My blog has always been a bit like an online diary – a place where I could offload because in real life I had no-one to offload to.   I include information on my diseases I’ve found along the way which I hope you’ve all found useful, but in essence my blog is written for me.  The fact that anyone ever bothers to read about my shitty life and my even shittier illnesses is simply the icing on the cake 🙂

I know I’m not everyone’s cup of tea.  I loathe when people come on my blog and tell me I should be doing this, or I should be doing that – unless you have access to my medical records and are menopausal, 51, have M.E., HIT, MCAD, hEDS, Endometriosis, Adenomyosis, Polycystic ovaries and severe migraine disorder for over a quarter of a century you and I are not the same and you have no clue what I should, or should not, be taking, eating or doing.  So I know I get tetchy with some of my visitors but that’s because they’re giving me advice that I absolutely did not ask for.

It’s also been levelled at me that I don’t like anyone to disagree with me.  Quite correct.  It’s like reading someone’s diary and disagreeing with their thoughts because they’re not the thoughts that you have.  I can think and feel any fucking way I like and just because it’s not how someone else might think and feel doesn’t make it wrong.  I wish more people got that and gave each other space to express their own unique and individual opinions and thoughts without feeling the need to constantly challenge them with a “yes, but……”.  These days, if someone writes a comment that starts off evenly remotely negative I simply don’t read it.

My blog has evolved just as I have evolved.  My knowledge has changed and grown over time and I think differently about many things in 2019 than I did back in 2013 when I was newly diagnosed.  I don’t pretend to know everything about everything.  I know enough to manage my diseases and that’s all.  Having said that, I’ve survived meningitis, cheated death twice, got back on my feet after being bedridden for a decade, fought for my hEDS and MCAD diagnoses when they were relatively unknown illnesses, survived countless anaphylaxis attacks and am fit enough to do a hobby I love, to live independently and to occasionally walk my lovely little dog – and all without any knowledge of genetic mutations and methylation cycles not to mention eating gluten, sugar and dairy every day of my life alongside Pringles, Starburst and a few gallons of tea 😉   However incorrectly some people think I’m living my life I’m obviously doing something right, for me at any rate.

Blogging so openly and publicly about your life is not for the faint hearted.  You make yourself vulnerable to spammers, stalkers, weirdos, the angry, the depressed, the dismissive, the judgemental, the just plain nosey and the downright bloody rude.  But in return you also open your life to friendship, support, knowledge, encouragement, understanding and laughter – and it’s that which keeps me going 🙂

Thanks to you all for caring about me and my struggle.  For sharing in my journey and for sharing yours with me.  You’re one in a million and I am thankful for you.