Christmas Food

I’ve had several emails this week mourning the fact that some my friends can no longer eat a traditional Christmas dinner due to their mast cell issues, which in the UK is roast turkey, stuffing, potatoes, yorkshire pudding, root veg, brussel sprouts, apple sauce, cranberry sauce and gravy followed by fruit pudding and custard.  I feel their loss, but luckily don’t share it, and apologise if my mates read this post and think “well, it’s alright for you!”  I don’t have food allergies ‘just’ a histamine problem which is kept mostly in check by eating a low histamine diet, and although we don’t have a roast lunch on Christmas Day (as explained in an earlier blog post) I’ll be tucking in on New Year’s Day instead.

Main Mean

I don’t eat turkey as I’m vegetarian so will substitute a Quorn ‘chicken’ flavour roast which contains only 7 ingredients all of which I can pronounce and I know I don’t react to, though if you’re a meat eater getting a fresh turkey at Christmas really shouldn’t be a problem.  I could also make my own Quorn meatloaf or use store bought organic Felafels.  I can eat potatoes, so will have both roast and mashed, and love my yorkshires.  I also love root veg such as parsnips, carrots and squash roasted in olive oil in the oven, but will leave out brussel sprouts for no other reason than they’re the Devil’s own vegetable ;-)  Apple sauce (home-made – see the Recipe page) is fine on a low histamine diet, though I’ll steer clear of the cranberry sauce (no idea of its histamine load, but it’s bought in a jar so probably contains all sorts of preservatives).  I’ll also make my own gravy (see Recipe page).

Photo of Quorn meatloafDessert

Dried fruit laden Christmas pudding is out, so we’re having a home-made sponge with a toffee sauce topping and home-made custard.  Job done.  Lots of desserts are fine to eat on a low histamine diet, however, see the Recipe page for inspiration.

If you usually have cheese and crackers after dessert that’s also do-able on a low histamine diet.  Carr’s Table Water crackers only contain 3 ingredients (flour, salt, vegetable oil) and although you can’t top them with hard cheese you can use a nice soft one like cottage cheese or philadelphia or a cheese alternative such as Violife which is made from coconut.

To round off the meal us Brits often have a cuppa and an after dinner mint.  If you can’t find any with suitable ingredients make your own peppermint creams (see the Recipe page) which can be prepared well in advance of the day.

Photo of peppermint & carob creamsDrinks

Obviously alcohol is out on a low histamine diet, so you’re going to have to get used to being tea-total, but there are some nice soft drinks you can have over Christmas such as:

  • ‘Belvoir’ Elderflower presse or cordial
  • ‘Bottlegreen’ mango & coconut presse
  • ‘Poms’ pomegranate juice
  • ‘Eden’ carrot juice
  • Apple juice or presse
  • Or, of course, you can make your own freshly squeezed fruit and veg juice if you have a suitable juicer and mix it with some fizzy bottled water.

Note: some of these contain citric acid as a preservative, but a little bit over Xmas isn’t going to kill you.

Snacks

We all traditionally eat crap over Christmas, and while you can’t tuck in to the Milk Tray or Bombay Mix there are snacks you can indulge in which, while not particularly nutritious, shouldn’t add to your histamine burden:

  • Plain tortilla chips (check ingredients) either on their own or dipped in mango chutney or home-made salsa (see Recipe page).  Gluten and dairy free.
  • Home-made butter popcorn.   Gluten free, and dairy free if eaten plain rather than with butter sauce.
  • Home-made butter fudge (can be made in advance and frozen).   Gluten free.
  • Fresh nuts (if you’re OK with eating nuts) which my diet allows but other diets restrict.

My best advice is not to try anything new over the festive period.  Spending hours in A&E after you’ve reacted badly to something you’ve eaten is no-one’s idea of fun.  Stick to things you’ve tried or eaten before and know are safe.

I hope, whatever diet you have to follow, you can find something nice to have over the holidays.  Bon appétit :-)

My arse!

I know anyone living outside the UK, who’s never seen the Royle Family, won’t get the humour in the title but suffice to say this post is about my bottom habits.  If you’re squeamish look away now ;-)

One of my earliest memories is being pinned down on the bed, screaming blue murder, while my mum shoved Vaseline up my back passage to help me poop (yes, I know it’s barbaric and thank God drugs for children have moved on since the seventies).  I didn’t know I had Ehlers-Danlos until I was 42 years old and by then I’d had a lifetime of not being able to poo.

I wasn’t much into food as a kid and if I’d had my way I would have lived on Rice Krispies, Ready Brek, dippy eggs and sweets.  I hated fruit and hated veg even more.  What I also didn’t realize at the time was that I struggled mentally and emotionally with the concept of eating meat.  It didn’t leave much!

My parents were often demented with trying to get me to eat more and another of my earliest memories was being made to sit at the dining table and told to finish my meal until I literally retched.  I know my Dad thought he was doing the right thing, but to be honest it just made me even more food averse.

As a kid, my inability to poo was put down to my poor diet.  I was constipated in the traditional sense, ie I didn’t go to the loo for days on end and when I did I had to strain really really hard.  I’ve been known to sit on the throne for up to 2 hours and used to make my Mom come and sit and talk to me to relieve the boredom ;-)  When the poo was finally expelled it was hard, lumpy, pale in colour and floated to the top of the toilet pan.

When I was in my late teens I became vegetarian.  I knew that, in order to obtain a good range of nutrients, I’d have to eat a wide range of foods and became much better at eating fruit and veg.  By the time I was in my early twenties, and developed ME, I think I had a pretty good diet.   I still didn’t poop.

The texture of my poo changed though and I was no longer constipated in the true sense of the word.  I still didn’t go to the loo for days on end, but when I did my poo was a nice dark brown colour and a good, smooth texture.  It was still really hard to pass though.  Of course, what I didn’t know then was that the intestines of people with EDS are very stretchy, and instead of passing poo along in smooth contractions mine was getting stuck along the way, particularly at the Ileocecal valve which joins the small intestine to the large intestine.  As my poo backed up it got bigger and bigger due to the stretch in my intestines and by the time it reached my bum it was the size of elephant dung.  Passing it was often a bit like giving birth, with me straining until I worried the veins in my head would pop!

I’ve tried all sorts of laxatives, and used to drink gallons of prune juice, both of which are no longer an option.  Due to my mast cell disease laxatives give me awful palpitations and prune juice is not on my low histamine food list.  Consequently I know I’m going to just have to live with poo problems.

Last week I had a particularly difficult to pass poop which was so big that when it came out it tore my bum hole (TMI I know!).  Not only that it has given me a pile.  Eugh!!!!!  It’s popped out and is sitting smugly on the edge of my anus, all swollen, slimey and itchy.  Middle age has reached a new low ;-)

Most people with mast cell disease have diahorrea.  The intestines are packed with mast cells which, when activated, cause runny poop.  Dr S said that in my case, however, my EDS is stopping that from happening and I’m getting the opposite problem.  Out of the two I’d choose constipation as at least I don’t have to worry about rushing to the loo when I’m out and about.  I also think people with diahorrea tend not to absorb nutrients etc. from their food well, as it rushes through their intestines too quickly.  However, people whose poop sits in their intestines too long can then get fermentation which isn’t good for you either.

I appreciate a post on poop isn’t exactly festive but my first ever pile is a milestone Event which I thought I would share with all you lucky readers ;-)  Happy Christmas My Arse!

Have you tried….?

When you’re ill, your loved ones just want you to get better.  Hell, you just want to get better.  For this reason anyone with a chronic illness will hear the following phrase a couple million times throughout the course of their life: “have you tried…….?” (add a range of drugs, supplements, diets or therapies to fill in the dots).

I’ve been ill for 20 years, so the answer to the question is usually always yes.   The novelty of being in my sick bed wore off in the summer of 1994 when I realized all my 26 year old mates were off out on the lash, and probably the pull, and I………well, wasn’t.  I don’t want to be sick and I’ve spent in excess of £25,000 ($39,000) over the years trying to get better.  Spoiler alert: I’m still sick.

When I hear the latest “have you tried…….” I have two choices:
1. Reply “no, I’ve sat on my lardy arse for two decades feeling sorry for myself and not even thought to try manuka honey/meditation/acupuncture” or
2. I have thanks and it made me so ill I ended up in A&E, followed by 3 months in bed.  Upside is I lost 9lbs in weight puking.
They’re not replies which go down well and there’s this awkward silence where neither party knows quite what to say next.

I feel guilty for the fact the lovely person’s suggestion has actually made me worse/hasn’t worked at all.  What I’d really like to say is: “gosh, no, hadn’t thought of ice cold baths I’ll give it a try”  then ring them up a week later to say “eureka, I’m cured!”  But being as though one of my diseases is genetic and currently incurable, and one of the others gives me life threatening anaphylaxis to anything which might alleviate a single one of my symptoms, I’m guessing the Eureka moment is never going to happen.

After all this time I still haven’t found a way of dealing well with the “have you tried……”question, particularly as the other person is only trying to help.

For anyone who’s interested, I thought I’d do a list of the things I have tried.  I can’t remember every single treatment, because in the early days I had no idea I was going to be sick for the rest of my life so didn’t keep notes, but here’s a few off the top of my head:

Drugs

  • Pain relief: Paracetomol, Ibuprofen, Codeine, Co-dydromol
  • Muscle relaxant: Robaxin
  • Sedatives for insomnia: Diazepam, Temazepam, Nitrazepam
  • Hypnotics for insomnia: Welldorm, Stillnoct, Zimovane
  • Antidepressants for insomnia and pain: Amytriptelene, Dothiepin, Surmontil, Prozac, Zispin (and several others – trust me, I’ve tried them all)
  • Tryptans for migraine
  • Propanalol for palpitations
  • Hormones for period pain
  • Mefanemic acid for period pain
  • Eye drops for dry eyes
  • Decongestants for sinusitis
  • Steroid inhalers for bronchitis
  • Oral steroids
  • Laxatives for “constipation”
  • Antibiotics
  • Anti-histamines

Supplements et al

  • GABA
  • Co-enzyme Q10
  • Bee propolis
  • Manuka honey
  • Kambucha tea
  • St John’s wort
  • Fish oils
  • Echinacea
  • L-carnitine
  • Sublingual B12
  • Raw olive oil
  • Magnesium
  • Vitamins C, D, E
  • Garlic
  • Increasing salt
  • Ginkgo biloba
  • Riboos tea
  • Lemon verbena tea
  • Peppermint oil capsules
  • Various Probiotics
  • L-Glutamine
  • Arnica
  • Liquorice root
  • Essential oils (bathing and as massage oils)

Diets

  • Anti-candida (sugar and fungi-free)
  • Gluten-free (three times)
  • Dairy-free (3 times)
  • Gluten-free & dairy-free (twice)
  • High fat
  • Low fat
  • High protein
  • Low carb
  • Low GI
  • Largely Raw
  • Plant based
  • Sprouted seeds and legumes
  • Low histamine

Therapies

  • Acupuncture/acupressure
  • Reflexology
  • Osteopathy
  • Cranial oseteopathy
  • Homeopathy
  • Lymphatic drainage
  • Hands on/faith healing
  • Chiropracty
  • Massage in various forms
  • Ice baths
  • Epsom salt baths
  • Electrical stimulation
  • Graded exercise
  • Yoga
  • Tai chi
  • Meditation
  • Neuro-linguistic programming
  • Mindfulness
  • TENS for pain relief
  • Physiotherapy

You’ll notice I’ve marked some of the items in maroon.  These are the things I’ve had a mast cell reaction to, sometimes so severe it’s required hospitilization or spending months in bed feeling like I was dying.  For the most part everything else has simply had no effect.

There are a handful of things which have helped, however:

  • Acupressure reflexology points: these are found on the feet, and if I do them myself, gently, they can sometimes help with nausea and feeling ‘wired’.
  • Acupuncture: although this eventually set off a mast cell reaction, I did have some needles successful placed in my knees which helped with severe knee pain.
  • Lemon verbena tea is really good for nausea.   Sadly, the company who used to make it here in the UK stopped and I can’t find it any more (I can’t risk a blended tea cos I might react to the other ingredients).
  • I don’t know what I’d do without my TENS machine for back pain.
  • I used to swear by Epsom salt baths for tense and spasmy muscles, but I started reacting to it so had to stop.  Ditto to Arnica massage balm by ‘Weleda’ which I used to love.
  • My low histamine diet has helped reactions after eating (for which I’m eternally grateful) but not much else.
  • H2 antihistamines (which I’m currently reacting to) help enormously with GERD.
  • The thing which has been my best friend throughout my decades of illness, however, is good old heat.  Warm baths, hot water bottles and heat pads.

Note these things have helped my symptoms slightly.  Nothing has had any effect on any of my underlying disease processes.  I have made a significant recovery from M.E. as detailed in this blog post, which involved strict pacing over a number years and a shed load of luck – not a magic pill or restricted diet in sight.  My EDS continues to deteriorate and my MCAD is only barely managed with diet and antihistamines.

It’s incredibly tempting when faced with the suffering of someone we care about to tell them about your husband’s cousin’s daughter’s friend who got better from ME by dancing round a May Pole during a full moon, but my advice would be not to particularly if your loved one has been sick for a long time.  I can guarantee they know more about their illness than you do and will have pursued every avenue to recovery.  If you want to help just tell them “that sucks” and give them a hug – they’ll truly appreciate your empathy and validation of their suffering.

 

 

Weekly roundup

I’ve had one of those weeks where life has seemed tough.  Every joint is hurting, I’ve struggled to sleep for over 3 months now and am beyond exhausted, I’ve had a bad run of migraines one of which kept me up all night on Thurs vomiting and I had a mast cell reaction on Fri night which now means I’m petrified to take my H2 anti-histamine.  So I’ve had a break from it, and the anxiety, and now have rampant reflux which is simply agony and my cough is back so acid is obviously spilling into my lungs.  After 20 years of living with these kinds of symptoms, and more, every second of every day, I’m kinda tired of the whole thing.

I’m not getting on very well with my Smart crutches.  I ideally wanted a black pair, but after reading the blurb realized I needed the smaller crutches with the shorter leg and arm rest lengths and they only come in red, blue and grey.  I settled for grey, which are actually still very smart with black stripes, and they are definitely much lighter and more user friendly than the NHS gutter crutches.  However, the cuff which goes round your arms is massive and as I walk along my arms just fall out of them.  Not sure why they’ve made crutches for tiny people and put a standard cuff on them?  I’ve kept meaning to ring the company for advice, but it’s just another chore to add to my list and I’ve not gotten around to it yet.  I think I’ll try sticking some foam inside to pad the cuff out and make it smaller (I don’t want to use any kind of tie because it makes them impossible to put on or take off on your own).

Monday I took my Dad 30 miles to our local hospital for a follow-up endoscopy (he’s had severe stomach problems for years).  We got there at 1pm, his endoscopy was due at 1.30pm, it takes about 90 minutes, so we thought we’d be home about 4pm.  Think again.  We sat in the packed, boiling hot, waiting room on rock hard chairs until 2.45pm when they finally called his name.  I told the nurse I was popping into the city to do some Xmas shopping for my Mum and would be back in 90 minutes.  I got back to the hospital dead on time to find my Dad, stony faced, sitting in the waiting room.  Thinking he’d finished early and had been waiting for me to pick him up I apologized, but he said “oh, don’t worry about it – I haven’t had the damned thing yet!”.

By that stage he’d been sat there for nearly 3 hours.  I pressed the buzzer to the theatre and asked a nurse what was happening.  Apparently there’d been several emergencies in that afternoon, which I understand, but not a single member of staff had been out to the waiting room to tell any of the patients what was happening.  They’d just left them there.  My Dad was told not to eat or drink anything for 6 hours before the procedure.  He wasn’t up in time to have an early breakfast, so hadn’t had a bite since his supper at 5.30pm the night before, nearly 24 hours earlier.  Good job he’s not diabetic.  By the time he had the procedure done and we arrived home it was 6.30pm – we were both totally fed up and my Dad was absolutely ravenous.

The week has not been a total right-off however.  As regular readers know, my Mum has been coughing up blood again and had an emergency CT scan last Tuesday.  We got the results and there has been no significant change since her last scan, so that was a massive relief.  We still don’t know why she’s coughing up blood, but it has happened before, went on for 3 months, then just stopped.  I’m convinced she has Ehlers-Danlos and has very fragile capillaries and it could just be that, because of her severe recent chest infection and all the coughing she did, she’s damaged some of them (is that even possible?).  She also has horrendous nose bleeds for no reason anyone can fathom and which can happen in the middle of the night while she’s sleeping.  Anyway, they’ve made her an appt to see a pulmonary specialist in Feb.  Not sure why, as there’s nothing anyone can do about her lungs, but we’ll go anyway and see what they say.

My other big news of the week is that the results of my second Camera Club competition were announced on Wednesday.  It was on a set theme of flowers, so I submitted 2 very different pictures: one of some poppy seed heads taken in my garden, and one of some wild poppies in a rape field taken on a walk with Bertie early one morning.  To my amazement the seed photo won me 2nd place and the poppy flowers won me 1st!  As I’d never taken a “proper” photo in my life until 3 years ago and am completely self-taught (which is code for ‘haven’t a clue what I’m doing’) I’m always gob-smacked that seasoned photographers think my pictures are good in any way!

1st place

1st place

2nd place

2nd place

Right, it’s now 8.30am and I really must get up and have some breakfast.  My dog walker doesn’t come on weekends, so I have to take Bertie out at 9am which, with the new scooter, is no bother.  I always wake between 6am-7am, regardless how little sleep I’ve had, and do nearly all my blog posts at this early time of day as my brain works at its best just after I’ve woken up.  I know this totally flies in the face of most people with M.E.’s experience, where their brains simply don’t work in the morning, but I’ve always been a Lark and do all my paperwork before 11am because after that my brain is simply not capable!

Eating Out

It’s easy enough to control food when you’re at home, but eating out is a mine field and I’m often asked how I cope.  I’m lucky that my reactions haven’t so far caused immediate and life-threatening throat swelling and I know that some of you aren’t so fortunate, so I can only tell you what I do which I’m not suggesting will work for everyone.

I’m not truly allergic to anything apart from alcohol, so I luckily don’t go into anaphylactic shock after eating any one particular food.  Histamine is my issue, and as I’ve mentioned before I look at histamine like a bucket – I’m always going to have some histamine in my bucket, but so long as it stays under half full I can cope with the mild symptoms this produces.  The more full my bucket is, however, the worse the symptoms get and it then might only take one high histamine food to overflow my bucket and send me into an anaphylactoid reaction.

How full my bucket is depends on many factors, however, not just food.  Am I having my period?  Am I under stress?  Am I particularly exhausted?  Am I being subjected to huge temperature fluctuations, eg. going from a hot house to the snowy outdoors?  All of which I need to take into account when deciding how high my histamine levels might be on any one day.

Here is how I navigate eating out:

  • If I know I’m going to have to eat food which isn’t freshly prepared I’ll dose up on some anti-histamine before-hand.  You’d be surprised how much this helps.
  • I eat out most weekends.  I go to a cafe where the food is all fresh, locally produced and mostly made on the premises and I choose the lowest histamine foods available.  This weekend, for example, I had sweet potato soup with home-made bread.  Yes, the bread contains yeast which I shouldn’t be having but 2 slices per week isn’t going to cause me any significant problems (providing I’ve been following my usual low histamine diet the rest of the time).  Last week, however, the soup choice was tomato so that was a definite no-no and I just had a plain scone with butter, followed by a mug of warm milk and some treacle flap-jack.  I still make mistakes though.  I was invited by some friends to lunch in a lovely hotel last month where I chose a mediterranean vegetable panini with coleslaw and salad.  It was delicious, but within 30 minutes of eating it my brain just went to mush, my whole body felt like lead and all I wanted to do was go to sleep.  I’ve eaten paninis before with no problems whatsoever, so I can only conclude there was something in the vegetables that didn’t agree with me or that the panini wasn’t freshly made.  So I suffered for the rest of the day but thankfully the reaction wasn’t anaphylactic in nature and wasn’t going to kill me.
  • If I’ve been invited to someone else’s home to eat I have two choices: I can speak to the host beforehand and decide between us on a menu I know I’m relatively OK with; or I can take my own meal.  The host will be someone who, you would hope, likes you enough to’ve invited you for dinner so should be willing to work with you on the best solution.  After all, it looks bad for them if you pass out or swell up after eating something they’ve cooked ;-)
  • I do indulge in the odd high histamine food on special occasions.  I’ll sneak a mince pie or an occasional chocolate, but as long as I don’t go berserk (like eating the entire tube of Pringles!) I seem to get away with it.  It’s not as difficult as you might think to avoid eating lots of crap over Christmas.  I remember what it was like to feel horrendously ill the entire time and I simply don’t want to spend another holiday in bed feeling like death warmed up, so if missing out on the Bombay Mix is what it takes for me to feel relatively well and be able to join in the festivities like a normal human being then that’s fine by me.

The holidays, where you’re suddenly expected to join in and act like everyone else, can be tough.  Be selfish and do what works for you.  If all else fails, invite people round to your house where you can control the food environment – if you’re too exhausted to host ask your guests to bring a dish (they know you’re sick and truly won’t mind) or do what I do and order a finger buffet courtesy of Tesco.com which then gets delivered to my door.  With some planning ahead it is possible to make safe food choices yet still enjoy the festivities and have a great time :-)

New Recipes

Christmas is looming on the horizon and it’s a time of year when I particularly miss junk food.  Mince pies, mint Matchmakers, sour cream ‘n onion Pringles, Christmas cake slathered in crunchy icing ………. I’m drooling just thinking about it ;-)  So I decided to try a new sugary snack to get me through the festive period.  I love Butterkist (my teeth not so much!) but the bought varieties usually have soya additives, so I decided to make my own.  It’s as good, if not better, than commercial popcorn, takes literally minutes to make (kids would love to see the corn popping) and is also gluten free – see the Desserts section for the recipe.

Unfortunately, woman cannot live on sugar alone so I’ve also added a recipe for Leek & Ricotta Cannelloni to the Mains Section of the recipe page.  Easy, delicious and very filling!

I saw a recipe for some quick yeast-free spicy tear ‘n share bread on ITV’s This Morning programme recently, so have given that a try – recipe in the Miscellaneous Section.

And to go along with the bread I also gave the This Morning’s simple sweet potato soup recipe a bash – see the Soup Section for details.

I hope these recipes give you inspiration and something different to try.  Enjoy :-)

 

 

 

All I want for Xmas is..

Having 1 potentially life-threatening, 1 chronically painful and 1 beyond exhausting disease you’d think All I’d Want For Christmas would be to be healthy.  Or pain-free.  Or to have my first night of uninterrupted 7 hours sleep in over 20 years. Or to have a Euromillions win so’s I could employ a chef to make all my low histamine meals.  Or a Cleaner who comes more than once a fortnight.  And whilst all these things would be life-altering (if unrealistic) it’s not what I truly want for Christmas.

What I’d really really like is a cuddle.  To snuggle on the sofa with someone I love (or even like a lot, I’m not that fussy ;-) ), with the fire glowing, the Xmas tree lights twinkling and maybe some gentle Christmassy music playing in the background.

I haven’t dated now for 8 years.  I don’t go anywhere to meet anyone, and 40/50something single men, who are attractive, intelligent, share my warped sense of humour, and don’t live 3000 miles away on another continent seem hard to come by.  And most of the time I’m resigned to the fact I’ll be alone forever and I’m as OK with that as any 47 year old human being can be.  But at this time of year the goalposts change.

Christmas, however way you want to look at it, is not for single people.  It’s for sharing, caring and being with someone.  And any single person, especially one who is largely housebound and can’t get out to join in the festivities, who says they’re not lonely over Xmas is lying through their teeth.  So I’m not even going to pretend it’s fine to be alone at Christmas.  It’s not.  It sucks in every conceivable way and some ways you’ve not even thought about.

I’ve spent every one of the last 18 years (bar one) alone, so you’d think I’d be used to it.  And I am.  But I still wish it were different.  I still wish I was snuggled up on the sofa with someone I cared about.  Human beings have an innate need for physical human connection and to not have it, ever, is like some form of torture.

So, Santa, if you’re listening I’ve been ever such a good girl this year, so I’m happy to do without the perfumed toiletries I can’t use cos they make me itch, the chocolates I can’t eat cos they give me migraine, and the alcohol I can’t drink cos it makes me pass out, and I’ll settle for a cuddle instead.