Tag Archives: Reflux

Keep your eye on it!

I haven’t felt very well the past few days.  Correction, I’ve felt crappier than usual the past few days ;-) .  The Birch pollen season has begun, so I’ve been sneezing my head off and my eyes are dry and sore, although this year I know to keep all my windows shut, run the air purifier in my bedroom, always wear my glasses when outside and put some Hay Max organic balm around the inside of my nostrils before I venture outside which seems to work quite well.

But I’ve also been really muzzy headed, have had a sore throat and just felt generally drained and ‘not right’.  My chest is also worryingly tight (although I bought a peak flow metre and my readings are excellent at 550) and I’m coughing my head off.  It could be related to the pollen, but at the same time I’ve had reflux pain so it could also be a bad bout of GERD.  I’m already on the maximum dose of Tagamet (H2 blocker), plus extra Gaviscon Advance especially before bed, but it’s obviously not keeping the acid at bay.  I tolerate the H2 so well that I’m extremely reluctant to try a PPI instead, although if it gets much worse I might have to.  So I’m wondering if the sore throat is from the reflux and coughing, or whether I do have some kind of mild throat infection particularly as I don’t feel ‘well’ (although my temperature is normal).  My step-brother gets bad hayfever though, and he doesn’t feel well at the moment either, so it could also be the pollen!

That’s the problem when you have M.E. – every day you feel like you have the Plague, so how can you tell when you actually do have a virus?  Or whether your increased symptoms are down to something else entirely, like hayfever or an MCAD flare?  Or whether you’re just having a crap M.E. patch?  Answers on a postcard please.

I gave up going to see my GP about anything about 10 years ago.  She would either hand me a prescription that I couldn’t take, or refer me for tests which always came back normal.  All the visits ever did was make me feel like a hypochondriac which wasn’t good for my psyche.  But there are some symptoms I really worry about, like my lower stomach/pelvic pain which has been particularly bad in recent months.  I am 110% convinced the pain is down to endometriosis, but what if it’s something more sinister?  I have regular smear tests but that wouldn’t pick up ovarian cysts or internal tumours.  About 5 years ago I actually think I had a burst ovarian cyst (I’ve never had pain like that in my life) but I still didn’t call an ambulance – by morning it had settled down a bit and I’m still here so whatever it was it didn’t kill me!  There’s a saying in my family to “just keep your eye on it” – with everything that’s wrong with me it’s a wonder I can see straight ;-) .

The only time I’ve been to hospital was after I’d had a mast cell reaction to having chiropracty for my back.  Within 5 minutes of the treatment I knew I was going to be really ill.  And I was, including having tachycardia for 3 entire weeks and horrendous vomiting/retching.  After 21 days of continuous symptoms (including losing 9lbs puking) and absolutely zero sleep, I had chest pain so bad it felt like I was being skewered by a bread knife.  So at 3am one night I called 111 (the non-emergency number) and was told I had to call an ambulance.  I said I didn’t want to, I’d be fine, but the Doctor on the other end disagreed and called one anyway!  I ended up being blue-lighted to hospital, only for my ECG to be considered ‘normal’ (I knew I was having an allergic reaction and that there would be nothing wrong with my heart) and discharged 5 hours later in the snow, in my pyjamas and with no way of making the 30 mile journey home (a taxi would have cost me £80!).  It’s not going to happen again in a hurry.

I might try some Claritin (H1 blocker) alongside my Tagamet to see if that will settle any hayfever symptoms down (although it gives me insomnia!) but other than that I’ll just put up with the tight chest.  It does get me down though, as breathing is exhausting when it feels like there’s an elephant sitting on your breastbone!

I am, however, going to finish on a high note.  I’ve had the biopsy results for the lump on my little dog’s leg and it’s just a benign cyst and nothing at all to worry about, yayyy :-) .  And my Mum is definitely brighter now we’ve altered her medication – like her GP says, it’s a balance between quality of life and quantity of life.  If I had a choice, I’d rather be well and die at 60 than feel like this every day and live til I’m 100!

The Gluten-free Experiment

I’ve now been gluten-free (yes, I’ve been strict!) for over a month.  It hasn’t been difficult at all and certainly nowhere near as challenging as going low histamine.   I’ve substituted Doves gluten-free flour mix for normal flour in recipes and it’s worked really well.  You can buy gluten-free pasta and cereal in all supermarkets now, and I’ve been baking my own yeast-free gluten-free bread.  Many of the commercial products containing gluten, eg. sauces, biscuits, cakes, I’ve been avoiding in any event as they have ingredients not allowed on the low histamine diet.

Despite my best efforts I’m sad to report I don’t feel any different whatsoever (with the exception of one symptom – see below).  This may come as a shock to all those who tell me gluten is ruining my life, but it comes as no shock to me being as though I’ve tried a gluten-free diet twice before and it didn’t help then either.

I’m sleeping appallingly, consequently I’m so exhausted I can barely function.  I have hives, I am itching, I am sneezing my head off.  I have stomach pain, and back pain, and really bad brain fog.  My bowels are unchanged.  I have nausea, I have throat weakness and I have had 3 migraines this month (which is more than normal).  Honestly guys, I feel just the same.

The exception being that my heartburn is much reduced!  However, before we all get too exited I started on Zirtek (H1 anti-histamine) at the same time as I started the gluten-free diet.  I’m also doing hiatal hernia massage daily.  So out of the three, I’ve no idea which it is that’s helping (yes, I know I should only do one thing at a time, but I needed a good trial of the Zirtek before I go back to see the Consultant next month).

My gluten-free experiment is up at the end of November, so I will switch back to eating gluten.  If the reflux gets worse, I know it’s the gluten.  If it doesn’t, then gluten isn’t a problem.  And before you all say that 6 weeks isn’t long enough to see a change, I’ve done gluten-free before: 6 months the first time and 3 months the second time.  I didn’t see any change then either.  When I started the low histamine diet, however, I noticed a change within the first week.

My good friend K has had M.E. for over 12 years now.  She found out by accident she was Coeliac following a routine blood test about 8 years ago (followed by the usual biopsies), so consequently she has to follow a very strict gluten-free diet.  I asked her if she had noticed any improvement in the symptoms of her M.E. and she said no.  None whatsoever.  I know gluten is an issue for some people, but it’s not at the root of every disease known to man and I wish the gluten zealots would accept this.

For me, the jury is still out as to whether avoiding gluten is helping my reflux, but as for anything else it’s a dud I’m afraid.  In fact, I’ve felt absolutely rubbish during November and have had the least energy I’ve had all year :-(  Trust me when I say I was hoping with all my heart that avoiding gluten would make me feel like a new woman, and I’m more bummed than anyone that it hasn’t turned out that way.  Onwards and upwards.

What I did discover in my gluten-free quest was a really good pizza base flour mix.  It’s made by Isabels and is also yeast-free.  You buy it as a packet flour mix ( sorry, it does contain milk powder for those who avoid dairy) and you mix it with egg, oil and water, knead it, roll it thinly, pre-bake it for 10 mins, add your pizza topping, and then bake for another 10 minutes.  It makes a thin crust pizza and you get about four 9″ pizzas out of one box (containing 2 packet mixes).  I used one box, ate one pizza fresh, rolled out the other 3 and froze them.  You can then just bake straight from the freezer.  The only mistake I made was rolling out the bases too thinly and next time I’ll do them slightly thicker.  For the topping I used my red pepper sauce, fresh mozzarella cheese and veg.  I’ll put the details up on the recipe page when I have time – it’s available to buy from select ASDA and Booths stores or online at Amazon.

Photo of gluten-free yeast-free pizza

The H1 Experiment

Since the last week in October I have been adding an H1 anti-histamine to my daily H2 anti-histamine regime (as per MCAD protocol).  My H1 of choice is the non-sedating Zirtek oral solution (Cetirizine Hydrochloride).  As usual, I started off with a teeny tiny drop on the end of my tongue, but for the past 2 weeks have been taking the full adult dose of 10ml daily (though I take it in the paediatric dose of 2 x 5ml spoonfuls at 10am and 8pm, being as though I often wake in the night sneezing my head off and thought that just one dose in a morning would have worn off by 4am the next day).

So far, it has made not one jot of difference to my symptoms.  I am still sneezing, still itching, still very tight chested and have a fresh outbreak of butt hives!    I also have raging insomnia which is making me sooooo tired (don’t know if that’s the drugs or just a coincidence, as my sleep has been rubbish since I developed M.E. in 1994).  Maybe the Zirtek just needs a bit more time to work, or maybe I need to up the dose – I’ll discuss with my Consultant when I see him.  It is, however, yet another miracle that I am tolerating it at all.  Honestly, I haven’t been able to take a drug in 6 years, yet am now on both Tagamet and Zirtek without an anaphylactic reaction.  To say I’m gobsmacked is the understatement of the year!

Another good thing to happen in the last 2 weeks is that my heartburn has reduced quite substantially, although it does creep back if I’m late taking my Tagamet even by an hour.  However, I started the Hernia massage and the gluten-free diet (see my next blog post to be published in a day or two for an update on how that’s gone) at the same time as the Zirtek, so I’ve no idea which has been the helping factor.  At the end of November I will try re-introducing gluten back into my diet, so if the heartburn comes back at least we’ll know.  But if it doesn’t, the positive change would be down to the Zirtek.  I’ve read that you can have hives in your GI tract, so that would actually make more sense than you’d think.

I’m just about over my hissy fit at not being able to get to London for my results on Tuesday.  I’ve re-booked to see Dr S next month and will just have to keep my fingers, toes and everything else crossed that I will be well enough on the day to make the trip!  If it were today I still wouldn’t be going because I feel lousy.

Changing the subject entirely, I miss baked beans, particularly at lunch-time.  Not the most nutritious of convenience foods due to their sugar content (though the haricot beans are a good source of protein), but so versatile: I had them on a baked spud; with scrambled egg; put them in casseroles; had them on toast…….  So for the past 2 weeks I’ve been perfecting a baked beans recipe.  I think it’s just about there, though you might need to tweak the ingredients to suit your particular taste (making it less sweet by reducing the sugar or treacle, or making it more sour by adding more tamarind, bearing in mind my recent discovery that UK and USA tablespoons are not the same!).  The sauce is darker than tinned baked beans, but honestly if you close your eyes the taste really isn’t bad considering they don’t contain any kind of tomatoes (let’s face it though, they’re never going to be Heinz, so don’t expect miracles!).  See the Recipe page for details.

Photo of baked beans

Hernia

I saw my GP a couple of days ago to discuss my continuing reflux, breathing issues and cough.  When I described my symptoms, in particular the feeling that I have a piece of sharp toast constantly lodged at the bottom of my oesophagus, she said I’ve almost certainly developed a hiatal hernia due to my faulty collagen making the sphincter to my stomach weak, which is what I’d already concluded myself (hernias of all descriptions are very common in EDS).  Part of my stomach is pushing up through my diaphragm and into my gullet allowing my stomach contents, including acid, to reach places it wasn’t intended to.

She said I could go for an endoscopy to confirm, but the thought of having another tube down to my stomach without any kind of sedation, as the drugs set off my mast cells, isn’t appealing.  There’s also the fact that, due to my pressure dermographism and the force used to get the scope down, the last one caused my throat to swell to scary levels.  I asked her if the treatment would be any different if I had a confirmed hernia diagnosis and she said no.  Suffice to say I declined the scope.

She wants to switch me from my current H2 blocker to a PPI (proton-pump inhibitor).  I resisted for several reasons:

  • Due to my horrendous drug reactions it’s nothing short of a miracle I’m tolerating the H2 anti-histamine.  I really feel I’d be pushing my luck trying a PPI.
  • PPIs cut stomach acid by 80%.  There is, therefore, hardly any acid with which to digest food.  This can lead to nutrient deficiencies, and in extreme cases malnutrition.  Due to my EDS I already have slow GI transit – taking something which would probably make that worse doesn’t seem wise.
  • Even if tolerated, PPIs can have some wicked side effects.  I should know, as both my parents are on them (my Mum having had GI issues for years probably due to undiagnosed EDS).
  • I’m only 46 years old.  The thought of living on PPIs for the next 40 years isn’t appealing.

However, we both agreed that having stomach acid leaking into my lungs can’t be doing a whole lot of good.  I’m already on 4 Tagamet tablets a day, so can’t really increase those.  I also take Gavison before bed, and have my bed-head raised 6″ off the floor.  The only thing she could suggest is giving me co-magaldrox which coats the stomach and gullet to stop acid from burning so much.  It’s a bit of a sticking plaster over a gaping wound but I’m not sure what my other options are.

You can have surgery to correct a hernia, but it’s not always successful.  It’s also a big operation and considering I react very badly to anaesthetic, and can’t tolerate any kind of pain-killers, isn’t something I’m desperate enough to consider just yet.  I may, however, end up on the PPIs as living with this kind of constant pain, cough and the feeling that Nelly the Elephant has taken up permanent residence on my chest is very wearing, not only physically but emotionally.

I’m not well enough to work, but volunteer from my bed when I can (which I treasure as it’s not something I’ve always been well enough to do).  I produce my Church newsletter each month (which goes out to 7 parishes) despite not being religious myself; am a volunteer board member of the 25% ME Group, a UK charity which solely supports people with severe M.E. (as against the wider disease Chronic Fatigue Syndrome); and crochet blanket squares and garments for AIDS orphans in Africa through Knit-a-square when my hands will let me.  Having not had much help and support throughout my own life, and particularly while I’ve been ill, it’s doubly important to me that other people not feel abandoned, alone or isolated and this is my chance to help in a teensy tiny way.  As Oprah would say: pass it on x

Photo of crocheted children's vests

The H2 experiment part3

I’ve now been on Tagamet (cimetidine) for a month for my severe GERD and I have to say……….it’s not bloody helping.  I have a constant pain in the middle of my breastbone, which goes right through to my back, between my shoulder blades and runs down the top outside of both arms.  I also constantly feel like something is stuck in my oesophagus and when I swallow it’s like I have to go past whatever this is.  I also still feel sick almost all the time and have the most disgusting taste in my mouth 24/7.  My breathing is also affected and I feel like I have a brick sitting in the middle of my chest every second of the day which at times can be a bit scary.  I also spend the whole day burping, which I never did before I started taking the Tagamet (despite everything going on in my digestive tract I’ve thankfully never suffered from wind in any direction!).

I upped the dosage of Tagamet to 4 tablets per day (800mg in total), plus I’m also still taking double strength Gavison liquid before I go to bed, and sometimes during the day as well (making sure to take it a good 90 mins after the Tagamet as they can interfere with each other).  Surely to goodness all these drugs should be doing *something*?!

I had an MRI scan and an endoscopy last April and neither showed a hernia.  But my symptoms have worsened since then, and I’m convinced I either have a hiatal hernia or my sphincter muscle is so weak from my Ehlers-Danlos that it’s not closing properly and my stomach is coming out into my gullet.  I’ve made an appointment to see my GP on 6th November and will ask to be re-referred to the Gastroenterologist at my local hospital (not that I have any faith in him, as my hospital is under Special Measures due to the fact they tend to kill people unnecessarily!).  The thought of having another endoscopy fills me with absolute dread it has to be said – surely that’s one of the most horrendous tests to ever have to go through (I’d love to ask for sedation, but am allergic to the sedatives!).  The last one I had done also resulted in my throat swelling due to my dermographism and the force they have to use to get the scope down.  Joy!

I am gutted that I am actually tolerating a medication for the first time in 8 years but it’s doing diddly squat to control my symptoms.  Mr Sod seems to live at my house!!

The H2 Experiment Part 2

Last month I asked my GP for a Zantac (ranitidine) prescription in the hope that it would alleviate my raging GERD (see the blog post here).  I always ask for liquid meds when trying something new, as it’s so much easier to take a teensy tiny dose of liquid than it is to try and break down a tablet.  But sadly the Zantac experiment went horribly wrong, and actually made my reflux worse not better.

I realised after a while that Zantac syrup is high in ethanol (ie alcohol) to which I’m highly intolerant.  So I switched to a pure ranitidine tablet (from Tesco) and sure enough the heartburn vanished overnight.  But I had the most horrendous nausea to the point where I simply couldn’t eat anything, plus my pre-existing brain fog got 10 times worse.  I was gutted.  Miracle of miracles I wasn’t having an allergic reaction to a drug, but the side effects were intolerable.

In desperation I asked my GP if I could try a different kind of H2 antagonist instead, and she gave me a prescription for Tagamet (cimetidine) syrup.  Thankfully I again had no allergic reaction to this and, although it still made me feel rather sickly, no increase in brain fog either.  But again the syrup contained ethanol (though in much smaller amounts than the Zantac), so I switched to cimetidine tablets (which are only available on prescription).  Hallelujah I seem to be tolerating these OK and they are definitely helping the reflux (though not eliminating it entirely).

The Tagamet does still have side effects: I sometimes get period-like stomach pains about an hour after I’ve taken a tablet, but this isn’t bad enough as yet to make me quit.  I’m also having looser stools, which I personally think is a bonus as I’m now pooping nearly every day as against my usual 2-4 days, and going to the loo daily is a good thing IMHO not a bad.  I’m still feeling nauseous, though I feel nauseous when I’m not taking any drugs at all, so who knows if the nausea is anything whatsoever to do with the antihistamine – it’s definitely not as severe as when I was taking Zantac that’s for sure.  I’m also having much more skippy heartbeats than usual, but again it’s nothing that worries me or is bad enough to make me stop the pills.  And finally I do feel very tired at the moment, but then I feel tired most of the time and it’s hard to tell if that’s in any way related to the drug.

On the plus side my chronic cough has disappeared literally overnight, yayyy!  The burning pain between my shoulder-blades has also for the most part gone, as has much of my heartburn (though not all – I do still have a constant niggling pain right between my boobs which feels a bit like something is stuck there, and I still get reflux if I eat a large meal – I’m actually sat here with raging heartburn having gone out for lunch with my friend and stupidly eaten both a main course and a pudding!).  I also have an awful taste of acid in my mouth almost all the time, which is truly disgusting – not quite sure what that’s all about if the acid in my stomach is being neutralized and kept under control.

I’m not unconvinced I don’t have a hiatus hernia (I must check with my GP as to whether or not anything was found during my endoscopy in 2011), or a very lax sphincter between my stomach and oesophagus due to my Ehlers-Danlos.  To stop any stomach contents coming back up my gullet I’m therefore still taking Gaviscon liquid after meals, which creates a foam barrier across the top of the stomach.  It definitely helps.

In short the Tagamet is helping but not curing my GERD, but is doing nothing for my nausea.  I have the option of increasing the Tagamet (I’m currently on the lowest dose at 200mg twice a day) but this increases my risk of an allergic reaction so it’s not an avenue I want to go down unless I really really have to.  I’m just thankful I’m tolerating it at all, because the agonizing pain I was in with my gullet being burned to bits by acid was actually quite horrendous and at times actually made me feel suicidal.

I’ve been particularly tired this week and really struggling to cook.  So I’ve resorted to my ‘cheat’ meal of Quorn ‘chicken’ with rice, which includes a shop-bought lemon & ginger sauce.  See the Recipe page for details and scroll down.

Photo of Lemon Quorn

The H2 experiment

I’ve had significant GERD (gastroesophageal reflux disorder) for about 10 years, although the first few years were ‘silent’ GERD with no wind or belching and back pain rather than breastbone pain , so it wasn’t picked up on.  The biggest problem I had was a dry, unproductive  cough which at the time was put down to all sorts of things (asthma, infection, allergy) before we realised it was acid reflux being inhaled into my lungs.  I’ve had all the usual tests, including an endoscopy, and nothing much was found other than several benign stomach polyps and a shed load of inflammation, so I was diagnosed with Gastritis.  Gastritis and GERD are common in Ehlers-Danlos as the sphincter which holds food in our stomachs becomes lax causing stomach acid to flow back up the oesophagus, and our bowels tend to be sluggish which causes our food to sit in our stomachs longer than it should causing inflammation.  The drug Domperidome is commonly used to speed up stomach emptying in EDS, but of course I’m allergic to it (it’s one of the drugs which give me Oculogyric Crisis).

To compound the problem, MCAD causes excess acid to be produced from the mast cells in our stomachs, so I’m in the middle of a perfect storm.  One of the first drugs to be given to MCAD patients are H2 antagonists (eg. Zantac, Pepcid), which target the mast cells in the stomach and stops them from producing so much acid.  I was told about 2 years ago I should be on Zantac but have just been too petrified to try it due to the way I react to medication.  Instead I’ve been sleeping with my bedhead raised off the ground to stop acid leaking back into my gullet at night, and taking Gaviscon Advance, which neutralizes the acid and creates a foam barrier across the top of the stomach to stop the contents leaking back into the oesophagus.  It helps a bit, though I do still have heartburn and the pain really gets me down.

It became so bad recently that in desperation I asked my GP for a Zantac prescription (though I always use liquids rather than tablets, as I can then take a teensy tiny dose and work my way up to a full one) and have been trialling it for the past 3 weeks.  The miraculous news is that I can tolerate the Zantac and have had no reactions to it.  The bad news is it’s made my heartburn much, much worse, so much so that I had to stop taking it 3 days ago and revert back to Gaviscon, and thankfully the heartburn is now settling back down again.

This is why I’m in no way religious.  I’m a good person.  Never done a thing wrong my whole life (oh, except to be caught going 7mph over the speed limit downhill on the motorway, and putting the wrong time on the disc on my car and incurring a parking ticket).  I’m a loyal friend.  An extremely good daughter.  I’ve taken in rescue animals my entire life.  And, despite being too ill to do full-time paid work for some time, have always done volunteer work from my bed.  Yet I get not one, not two, but three little known, under-researched and disbelieved diseases where I’m ignored by the medical profession and basically left to rot.  To add insult to injury I’m allergic to any drug which might help, and am too sick to do physical therapy.  And every time I’m given a glimmer of hope that something might help my symptoms (ie being able to tolerate the Zantac) it’s taken away again (ie the Zantac not only doesn’t help, it actually makes the situation worse).  There is no ‘higher power’ folks – we’re on our own.  p.s. please, please don’t leave me comments about God or about being positive or I might have to kick you!!!

I’m going to ask my GP for a prescription for Pepcid, another H2 antagonist which works in a slightly different way to Zantac.  Then of course I have to start the whole trial again, petrified every day I’m going to go into shock or have an awful reaction which puts me in bed for months.  There are times I seriously hate my shitty life and wished they sold new ones at Tesco (let’s face it, they sell everything else!).

Before I sign off, I’ve added yet another new recipe to the site.  We’re heading into Autumn here in the UK so I thought I do a recipe for stodgy but warming Quorn Cobbler & Dumplings.  See the Main Course section of the Recipe page and scroll down for details.

Photo of Quorn Cobbler

GERD/Heartburn

I thought following a low histamine diet would help my rampant heartburn – how wrong can you be?  It’s absolutely horrendous and feels like there is a man with a blowtorch living in my gullet.  I am on fire from the tip of my tongue to the pit of my stomach and everywhere in-between.  My mouth feels like I’m living on a diet of chillies and the constant taste of acid in the back of my throat is truly disgusting.  Nothing I do calms the heat.

I settled down to go to sleep last night at about 11pm but the pain was just so intrusive I couldn’t nod off.  I was tearful and exhausted and had no way of alleviating it.  The bed head is already elevated 6″ off the ground which in theory should help stop acid from running back into my mouth at night (it clearly isn’t working), and I’m taking extra doses of Gaviscon Advance which should be helping neutralize the acid (I might as well be drinking water for all the good it’s doing).  I know I need to try some H2 antihistamines, like ranitidine, to actually reduce the amount of acid my stomach is producing but am so petrified I’ll react to them I’ve been putting it off for about 12 months :-/  Not just because of a potentially negative reaction (which is bad enough and can make me ill for weeks, sometimes months), but for the mental torture that if I do react I’ll just be stuck with reflux for the rest of my days, the thought of which spins me into quite a deep depression (mind you, I’m already quite depressed with the pain :-/ ).

I also don’t want to take any drugs at all before I hear back from the Immunologist.  He mentioned a 24 hour N-methyhistamine test, and if he requests that in his letter to my GP I want to do it while my stomach (and therefore mast cells?) are playing up.  It will be 2 weeks on Wednesday since I had my appointment, so I’ll chase my GP up then if she doesn’t contact me first.  Not only will I get to hear what my actual diagnosis is (which will be wrong in any event and I’ve already requested a second opinion from a mast cell specialist in Manchester) but I’ll also get to know the results of my tryptase blood test (the test for Mastocytosis).  Not that I think I have Mastocytosis, as people with Ehlers-Danlos Syndrome are prone to Mast Cell Activation Disorder not Mastocytosis, but it will still be interesting to see how abundant my mast cells actually are.

I feel like I spend half my life waiting.  Waiting to see my GP.  Waiting for my GP to refer me to a consultant.  Waiting for my appointment to see the consultant.  Waiting for tests, scans, X-rays, blood work.  Waiting to see my GP for the results of said tests.  Waiting for diagnosis.  And then starting the process all over again because either the diagnosis is a pile of crap, or I’ve started with another symptom which needs to be investigated!  They say life is a journey, not a destination.  I’d prefer just to hurry up and get there so I can jump in the pool ;-) .

They’re Back!

Two days ago, when I was drying myself after a bath, I noticed a little raised red spot on my bum.  With sinking heart I thought it looked suspiciously like a hive, but it wasn’t itching so I gave it the benefit of the doubt and labelled it “a pimple”.  Forty eight hours later and the little tyke is itching like mad and starting to spread.  If it looks like a duck, and quacks like a duck, chances are……..it’s a duck (or in this case a hive).  I’m so confused and dispirited I want to cry!

All winter, pre-low histamine diet, I was living on aubergine (eggplant), Cheddar cheese, tinned tomatoes, cashew nuts, bread made with yeast, additives, preservatives, strawberries, orange juice, pre-prepared foods, re-heated foods, tinned tuna-fish and a shed load of sauces containing vinegar, and I didn’t have a single hive.  Not one.

And now I’m being a (fairly) good girl and they’re back.   It’s just not cricket, and I want to stamp my feet at the unfairness of it all.

Nothing else in my life has changed.  Admittedly it’s now spring, but it might as well still be winter as the temperature here in the north of England is barely reaching double figures and we have only had 1 fine, sunny day in the past month.  Same old same old then as far as the weather is concerned.

I do tend to get hives when I’m stressed.  But the thing is, I’m not stressed!  Yes the low histamine diet is challenging, and I’m not enjoying my food as much as usual, but in the scheme of things it’s not in the same league as potential financial ruin, the near death of my Mother, the adoption of a rescue dog with emotional issues, taking someone to court for negligence, or chronic carbon monoxide poisoning, all of which I’ve dealt with in the past two years.  In fact, there’s so little going on my life at the moment I’m really quite bored.

And to add insult to injury, not only have my hives returned, but my chest has also been playing up.  Irritated and tight like it used to be pre-Gavison liquid, only I’m still taking Gavison liquid three times a day.  Despite this, I’ve definitely had heartburn which, I would have thought, shouldn’t be happening on a low histamine diet, when the mast cells in my stomach shouldn’t be degranulating half so much and causing increased stomach acid.  But my reflux is worse than ever!  Why, why, why???

Admittedly I’ve not been on a strict low histamine diet.  But it sure beats the incredibly high histamine diet I lived on before.  It’s enough to make me want to pick the phone up and order a Biryani, with pilau rice, Peshwari naan, spicy poppadums and a large tub of lime pickle.  But I’ll restrain myself, get out the Tea Tree cream and go and stick the kettle on!

Low Histamine Diet Part 1

When I realised I may have Mast Cell Disease (MCAD) I could have tried some over-the-counter anti-histamines, as this is the first line of defence for this disorder.  But the main reason I’d researched MCAD in the first place is because of the horrendous reactions I have to just about all medications, so the thought of trying a new drug, alone, without any kind of medical supervision scared me half to death.   15 years ago I would have  been brave enough, but 20 anaphylactic drug reactions later and I’m now the Cowardly Lion.

The other main treatment for MCAD is to follow a low histamine diet.  This I could do.  At least I thought I could, until I looked online for a diet to follow.  The information ‘out there’ was so conflicting it made my head spin.  In the end, the only ingredients they all agreed on were fresh meat, potatoes (no agreement on sweet potatoes I hasten to add), green veg (as long as it wasn’t spinach), apples, sugar and water. You might as well kill me now, particularly as I’ve been pesco-vegetarian for 25 years and aren’t really that keen on apple!

Eventually I settled on a low histamine diet I thought I’d be able to follow, although I do still cheat and am not really strict on avoiding every tiny addition of vinegar in a jar of sauce, or every single additive. I absolutely refuse to stop drinking tea.  And during my period I’m evil unless I can eat at least one bar of chocolate (though my concession is to choose white over milk, my reasoning for which probably makes no sense whatsoever!).

The first 3 weeks of the diet were horrendous.  I suddenly couldn’t eat any of my favourite foods (I drooled just thinking about a huge plate of Aubergiene Parmigiano), which wouldn’t have mattered so much if I’d suddenly felt wonderful.  But I felt like absolute crap.

I live with exhaustion every single day of my life due to having both ME and HEDS, but at the start of the low histamine diet it took on a whole new persona.  I felt sleepy every second of the day.  It wasn’t an unpleasant feeling – more like someone was regularly slipping me a very relaxing valium - but I got absolutely nothing done and all I cared about was lolling about on the sofa watching daytime tv.  Thinking about it logically I suppose it could have been anticipated.  Mast cells, when they behave badly, produce histamine which in itself is an excitable neurotransmitter.  Histamine in turn produces adrenalin, the hormone which activates the “fight or flight” response, or gives you added energy during exercise or times of stress.  It makes you feel extra alert and unable to relax, that’s its job.  If, as I suspect, my mast cells had been rampaging for many years I’d been living with extra histamine and adrenalin floating around my body, and giving me false energy, for a lonnnng time.  Then suddenly, as my histamine levels, and consequently adrenalin levels, reduced my body was finally allowed to be as exhausted as it really was, and trust me when I say my body is truly tired.

The upside of having less adrenalin was that I slept really well.  I’ve had disturbed sleep for 20 years, but at the start of the diet the depth of my sleep increased and I woke feeling more refreshed than I had in two decades.  Silver lining :-).

During those first 3 weeks none of my other symptoms subsided.  I didn’t expect to suddenly go from sick to well, as both ME and HEDS are complicated diseases the symptoms of which would be completely unaffected by any kind of diet as they aren’t diet related.  But I had expected some improvement in reflux, nausea, stomach cramps, migraines and ‘brain fog’.  No such luck.  In fact I had the worst run of migraines I’d experienced in 3 years and my reflux was ratched up a couple of notches too!  I have no explanation for this.

I was so fed up at the end of week 3 of struggling to find things I could eat and missing my usual favourite meals, and having seen no improvement whatsoever, I decided the diet wasn’t for me.  So that night, feeling ill and shattered, I cooked up a junk food storm of frozen Chicago Town pizza and a huge plate of frozen oven chips with lashings of tomato ketchup.  God it tasted good!  My body, on the other hand, wasn’t quite so impressed.  Within 20 minutes I was flushed bright red, my heart was going like the clappers, I had pins & needles over my entire body, waves of sensation I simply cannot describe, and a very strange feeling in my head.  Plus I felt sick, sick, sick and my stomach was in complete cramp.  I hadn’t had a reaction this bad in several months and it was obvious that going back to my usual eating habits was now simply out of the question.  It was very demoralising and I did want to cry at the unfairness of it all.

After another 2 weeks on the diet, however, I did start to see some improvement in various symptoms.  The overwhelming exhaustion diminished, and in its place came a small amount of energy.  Not the wired, frantic, running-on-empty energy I was used to, but a calm, relaxed, more ‘normal’ energy which felt wonderful.  I also noticed my head was clearer and I didn’t feel like I was permanently half asleep.  I’m not saying my brain fog has gone, just that parts of my brain do feel less clouded.

Nausea diminished, and I now only feel sick for about 30 minutes after I eat rather than for the entire day.  My bowel movements, on the other hand, are reduced to every 4-5 days due to the lack of fruit (particularly prune juice) and nuts (a great sources of fibre) I now consume.  You can’t win ‘em all!

My mood has also improved.  I’m a bouncy, outgoing, sociable, humourous kind’ve girl who really doesn’t sweat the small stuff, but for decades this has hidden a chronic, low level depression that I just learned to live with.  I now know that histamine is a powerful neurotransmitter which alters mood and interacts with other mood altering neurotransmitters such as seratonin and norepinephrine.  I certainly seem to now have an inner bubble of happiness that hasn’t been there in a very long time and, whilst I’m not saying everything in my mood garden is now rosy, I definitely feel lighter of step.

On the downside, the pins & needles and general nerve tingling that I have constantly all over my body, particularly in my feet and hands, has actually gotten worse :-(.  I have no idea why this should be and can’t even come up with a tentative working hypothesis.  It’s like parts of my nervous system have calmed right down, while other parts have ratched right up to compensate.  I’m not impressed.

I’ve now been on the diet for nearly 7 weeks (I started on 3rd March) and can honestly say I’m glad I stuck with it (well, let’s face it my body gave me no choice!).  I’ve noticed, however, that while I feel more energetic during the day my sleep isn’t as good as it was during the first few exhausting weeks on the diet and has gone back to its usual disturbed self, which is rather disheartening.  Saying all that, I have introduced a couple of foods in the past few weeks (cashew nuts and bananas) and reacted so badly to the nuts I stopped them after 3 days.  The jury is still out on the bananas!  I re-introduce one food per week and, especially if I react to it, don’t start another new food until the following week to give my body chance to get over the reaction.  Nausea is still pretty good, I haven’t had a migraine in 3 weeks, and I still feel much more relaxed and energetic.  However, my nervous system is still berserk and for some reason my heartburn is worse than its been in months *sigh*.  This is where a trained dietician, with an interest in histamine allergy, would be worth their weight in gold!