Thursday, August 31, 2006

Almost symptom free

No anti-histamine today and minimal symptoms. I had the same lunch as yesterday but left out the blackcurrant squash. Very mild tingling of the lips tonight. We had shepherd's pie, green beans and gluten-free plum crumble. But too much coffee today and no biscuits to absorb it. Now I can take an aspirin tonight and try to get rid of this stiff back. I may need something to help me sleep without "non drowsy" anti-histamine in the system.

Anaphylaxis - the coming thing

Well a news report out today suggests that food allergy and anaphylaxis is the coming thing in medicine.

Apparently rates of 'traditional' allergies, eg hay fever and eczema have "stablised" over the last ten years or so.

But growing numbers of people are being admitted to hospital after suffering anaphylactic reactions or reactions from food. In fact admissions for anaphylaxis have risen by a staggering eight times whilst serious food allergy problems have risen by six times, according to an analysis of British referrals published in Thorax. It's not clear how he's distinguished between the two. It's also possible that some of this is caused by growing awareness and growing queues for diagnosis. How many of those people like me who carry an Epipen and experience weird reactions and symptoms go rushing off to the emergency department?

I understand the medical debate is going to be stirred up some more over the next couple of days. Watch this space!

You can understand why people get paranoid about allergy. How long before somebody makes a link with mobile phones? Something has sent my immune system haywire - although I suspect whatever it is is largely my own fault.

Still, nice to know I am not alone - I think. Two weeks to my hospital appointment.

Wednesday, August 30, 2006


For lunch I had plain cheese in toasted wheat-free bread. Tingling of the mouth started soon after, as it frequently does just after lunch. All that's left is cheese. Cheese??!!

I also had two fresh plums and a glass of blackcurrant squash. That's red fruits again. Could be something there.

Tuesday, August 29, 2006

A MacDonald's salad

Today, as we were travelling, we ate at MacDonald's and I had a chicken salad. My son ate the cherry tomatoes, picking them out himself by hand. See, I am being very careful now. The sauce was balsamic vinegar, entirely free of commercial thickeners that may contain wheat.

I had a fruit jelly for pudding, 99 per cent real fruit and strawberry flavour.

During the afternoon the tingling of the lips and numbing of the tongue returned. Yet my meal was wheat and tomato free. Perhaps strawberries are also a problem. Perhaps all red fruit is - after all tomatoes are a fruit. And I have been getting some strange hangovers from red wine - but that could be the effect of combining alcohol and anti-histamines.

Maybe it will turn out that wheat is not a problem at all. But if tomatoes are, I still won't be able to eat spag bol and pizza. Oh, no!

Monday, August 28, 2006

Two months and waiting

Well it's about two months since my brief consultation with "my" GP and a little longer since symptoms became alarming.

By brief I mean about two minutes.

During that time he managed to say "sounds like an allergy" and "You need to get one of these. If you find you can't breathe jab it in."

He then added: "I'm going to send you to the allergy clinic for allergy testing. Take an anti-histamine once a day."

That might have been it. The item he prescribed was an Epipen, filled with adrenaline. I later found that one of my friends was a school

By then I already had my own theories so I asked what else I could do, like staying away from food stuffs that seemed to trigger symptoms eg wheat. He then added the words "wheat?" to the referral note and said I could do if I liked.

I've written about the National Health Service for many years but have never experienced its wonders first hand. Now I am about to.

The pharmacy did not have an Epipen in stock but were able to supply one later in the day.

A few days later there was a big hue and cry about allergy. According to one expert estimate about 20 million people in Britain - that's 40 per cent of the population - suffer from it. There are just 30 specialist consultants in NHS hospitals. I was about to see one of those.

Many of those 20 million live with your basic hay fever. Many others of those have asthma, an unpleasant condition but one that is cared for by a different set of specialists. Others suffer from chronic skin conditions, aggravated or caused by allergy. But I seem to be among a select group who suffer from something rather different and quite frightening.

My GP gave me a printout and told me to telephone the hospital citing the password on the print out. This, I believe, is the new electronic Choose and Book system.

It didn't work. When I rang the hospital they said "have you been a patient here before?" No, I said. Well you need to be registered. Let me take your details, eg name and address.

It turns out that registration is not instantaneous. We will call you back and make a booking, she said.

They never called back. Instead a date and time arrived in the post. As it happened it was a good date and time - this coming Thursday, August 31st.

A few weeks later two more letters arrived, both on the same day. The first postponed my appointment by a week to September 14th. This puzzled me until I opened the second which postponed my appointment to September 7th. So my wait is, currently, about ten weeks.

That gives plenty of time to read up about the condition. And, once you google the word Epipen it becomes pretty scary stuff.

During my summer holidays I have been to the seaside, swum in open air swimming pools and gone for country walks carrying this gadget around.

There is apparently a debate about how often it should be applied. To my mind never - because if I ever have to use it we will need to call an ambulance to take me to hospital.

The Epipen is, in short, for anaphylactic shock. Some people define a condition between allergy and shock called anaphylaxis - where the slightest trigger provokes swelling of the mouth, tongue and throat. I reckon that is what I have. I also suspect it is not recognised in the NHS.

Shock may also lead to a catastrophic drop in blood pressure and that may prove difficult to detect.

The experts reckon shock is most likely to be triggered by nuts or insect bites. Well I did have one insect bite from a horsefly a couple of weeks ago. I did not discover it until after I had spent a couple of hours sleeping in bed, taking what I thought was a siesta. Was that an incident of shock? I have no idea.

I had my suspicions of wheat and other suspicions prior to seeing the GP. So I have imposed on my family and friends by adopting a strict wheat-free diet. Is it working? I have no idea. In some ways I feel better - yet symptoms continue to recur, tingling of the lips, swelling of the tongue and a rash that spreads across my tummy like a red traffic light, telling me there is something wrong.

So now there are tomatoes. This is the spaghetti bolognese theory. I love spag bol - but for some years it has seemed to be hard to digest. At first I thought it was meat or grease. Then I suspected wheat intolerance. But it is also thick with tomato.

A few weeks ago I went to a working lunch and all I could have from the extravagant buffet was celery and cherry tomatoes. Well that set the tongue off - swelling and tingling - and that was despite the daily anti-histamine. So I have crossed tomatoes off my eating list. And that makes it really hard because I cannot even eat organic or vegetarian chilli con carne. A few days ago a vegetarian friend gave me a concoction which was based on sun dried tomatoes and giant mushrooms. It looked so good that I ate it and spent the next 48 hours experiencing random swellings and tinglings. So tomatoes are definitely off my eating list now. The odd thing is that until those two incidents I had no idea. I was shovelling tomato sauce onto my food and even eating gluten free spag bol.

Yesterday I sprained a muscle in my back. I do not know if I can safely or sensibly combine paracetamol (acetaminophen) or aspirin with anti-histamine so I am refusing to do so.

I suspect the specialist will brush aside all the research I have done. British doctors usually do even though they are trained to take careful patient "histories". Certainly the GPs in my local practice are notorious. The NHS is now talking about the "expert patient" but I don't think patients are meant to be expert until they have been briefed by an expert or a nurse.

I know they are likely to do some kind of chemical testing, blood tests I guess. Maybe I will get a briefing note before I go because some of what I have read suggests they don't like you abstaining from foods before testing - as this may negate the testing. It sounds to me they are happier searching for dustmites, bees, nutes and pollen than other causes. Apparently there is even a condition called idiopathic anaphylaxis where no cause can be found. Some experts will start considering psychosomatic causes so I hope I haven't got that.

Am I kidding myself if I think I will get any answers on September 14?