Thursday, 21 September 2017

You don’t know what you’ve got ’til it’s gone…

My momma always said, “Life was like a box of chocolates. You never know what you’re gonna get.”

It seems Mrs Gump was right. The Good Lady Bard brought home such “a box of chocolates” just over three weeks ago – a generous thank-you gift… – and one of its many yummy constituents took me completely by surprise: giving me an intense allergic reaction. Two antihistamines, and two hours – plus many puffs of my blue Salbutamol inhaler – later, and I was on the way to recovery. It could have been much worse, though. The upshot being that I now take a pair of prescribed EpiPens with me – absolutely everywhere I go.

It looks like one – or some combination – of the many proteins in cow’s milk is to blame (eleven various forms of “milk”, from “Dried Whole Milk” to “Dried Whey”, were listed amongst the fifty-eight(!) ingredients): meaning that foodstuffs I have consumed all my life (and once helped to produce) are now permanently verboten. (Because of the 92% probability of cross‑reactivity, anything containing sheep’s and goat’s milk is also off the table. Mare’s – or even camel’s – milk will, in all likelihood, be just fine, though!)

Probably stemming from the hayfever I’ve suffered from for the last twenty-odd years – via the mechanism of oral allergy syndrome (OAS); also known as pollen-food syndrome (PFS) – there is a small chance I may now be allergic to other foods, as well (such as – I have now discovered – my favourite, delicious, dates): I am therefore having to test absolutely every individual ‘new’ ingredient I eat. This is done in a ‘graded’ manner: i.e. I first rub some on my lip; and wait for ten minutes. I then do the same inside my bottom lip, and on my gum. After another ten minutes, I chew it, and spit it out.

Presuming I don’t get a reaction at any of these three stages – e.g. tingling lips; or a nasty taste (or even an “itchy/burning sensation”) in my mouth – then the food can be added to my burgeoning (albeit truncated) ‘safe foods’ database. (“It’s like being weaned,” comments The Good Lady Bard. And she’s not far wrong. But if there is one thing I’ve learned: it’s that, from hence forward, I shall always treat ingredients lists with a great deal of suspicious respect.) If I do get a reaction (e.g. a runny nose; a full-blown asthma attack), then, later, this food will (or, rather, I will) be subjected to confirmative skin‑prick testing (SPT) and allergen-specific immunoglobulin E (IgE) blood tests (as mine is an immediate Type I or IgE-mediated reaction).

One of the biggest problems I face is eating away from home. Despite huge shifts in both attitude and the law – what have the Europeans [pdf] ever done for us…?! – many still believe that adult food allergy sufferers are just fussy eaters; or that someone claiming to have a dairy allergy just means that they ‘think’ they are intolerant to lactose (which I am – although this isn’t related in any way to my allergy… – although I guess I won’t have to worry about that any more…).

And yet, just one molecule of my trigger landing on the otherwise-clean cup to be used for my espresso from the steam issuing above the frother which just gave you your rather wonderful cappuccino… and I can be out for the count.

I may have gotten away with it previously (but only just; the experience was anything but pleasant) – but the magnitude of previous allergic reactions is no guide to how badly it may affect me next time. (Hence those EpiPens, powerful antihistamines, and spare inhaler – all part of my Allergy & Anaphylaxis Emergency Care Plan – carried in my conscious, constant rucksack. Not that I ever want to resort to using them.)

If you have – or someone close to you has (especially a small child) – a food allergy, you will appreciate just how serious and scary this all is. (At the moment, twenty-six days in – hence, I’m afraid, the long time between blog posts… – I am still extremely paranoid: as this feels like some sort of suspended death sentence – one that, like Damocles’ sword, could descend at any time.) However, many people, through no fault of their own – and I too would have been a member of this group until recently… – lack any real understanding. And it is this large majority that I am writing this for.

Admittedly, food allergies in adults are pretty rare (although finding reliable statistics is almost impossible – the prevalence of allergic children – probably around 7% – taking precedence). But there is a reason the fourteen most common allergens are picked out in bold on ingredients lists: and that is the possible severity of a reaction. Anaphylaxis – also known as an anaphylactic reaction, or anaphylactic shock – can kill, if not treated immediately: an adrenaline auto-injector (AAI) being the first line of defence. [This is why all such food allergy sufferers (should) carry EpiPens – other brands in the UK include Emerade and Jext – and, if they’re like me, practise using them religiously.]

But how do you know if someone is having such a reaction? Well, this is what I have listed under Severe allergic reaction: ANAPHYLAXIS on my emergency care plan…

  • Tight throat; trouble swallowing (mucus)
  • Significant swelling of tongue and/or lips
  • Pale/bluish lips
  • Many hives over body/widespread redness
  • Pale/bluish skin
  • Trouble taking in air (asthma attack)
  • Noisy wheezing/repetitive choking cough
  • Difficulty talking
  • Stomach pain
  • Repetitive vomiting/severe diarrhoea
  • Feeling something bad is about to happen
  • Fainting/weak pulse; dizziness/disorientation
  • Unresponsive/collapse

any one of which – had I consumed (or suspected that I had consumed) one of my trigger foods – would be enough to make me pull out an EpiPen and stick it in my thigh (although this is not as bad as it sounds) and (get someone to) call 999 – asking for an ambulance, and simply stating “anaphylaxis” (say “anna-fill-axis”).

After five minutes, if I hadn’t improved, I would reach – or ask/expect someone to do it for me… – for the second EpiPen that everyone who has such severe reactions must carry. Taking a strong antihistamine, and using my inhaler, are secondary treatments: as neither of them will have the slightest effect on anaphylaxis – especially as it can take 60‑90 minutes for antihistamines to kick in.

The adrenaline/epinephrine injection must always take precedence. It is what will save my life. (And, no: unlike the majority of children, this is not something I will naturally grow out of….)

If you would like to know more, there are some great resources to be found on the Web: Allergy UK and the Anaphylaxis Campaign being amongst the very best.

If you suspect you have a food allergy, though, your GP must be the first point of call. (A referral to an immunologist, or other allergy specialist, may follow… – although, currently, if you live in Tysoe, you will have to travel to Birmingham or Oxford for such an appointment. Fortunately, children with allergies can be seen at the local paedriatics clinic at Banbury.)

As always, I have found humour to be the best approach to dealing with this. With apologies to the late, great, Robert Palmer, I therefore leave you with the following…. (As Forrest once said: “That’s all I have to say about that.”)

Fridge lights are on, and yet you groan
Your diet is not your own
Your heart sweats, your body shakes
Another sniff is what it takes

You can’t sleep, you can’t eat
There’s no doubt, you’re in deep
Your throat is tight, you can’t breathe
An EpiPen is what you need

Whoa, you like to think your food can’t ever be scary, oh yeah
It’s closer to the truth to say you’re always quite wary
You know you’re anaphylactic, you’re allergic to dairy

You see the signs, but you can’t read
You’re running at a different speed
Your heart beats in double time
Another sip and you’ll be mine, a one track mind

You can’t be saved
Semi-skimmed is all you crave
If there’s some left for you
You don’t mind if you do

Whoa, you like to think that it won’t make you splutter, oh yeah
It’s closer to the truth to say it makes your heart flutter
You know you’re anaphylactic, you’re allergic to butter
Might as well face it, you’re allergic to butter

Fridge lights are on, and yet you groan
Your diet is not your own
Your heart sweats and teeth grind
Another bite and you’ll be mine

Whoa, you like to think that eating is always a breeze, oh yeah
It’s closer to the truth to say some stuff makes you wheeze
You know you’re anaphylactic, you’re allergic to cheese
Might as well face it, you’re allergic to Brie
Might as well face it, you’re allergic to Cheddar
Might as well face it, you’re allergic to Stilton
Might as well face it, you’re allergic to Crowdie
Might as well face it, you’re allergic to Wensleydale Blue…

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