Sunday, December 24, 2006

Happy Christmas!

As I'm a devout person, time for a sober, spiritual message for Christmas Day.

I am someone who likes to take time over Christmas for reflection, testing my life against the Christmas message. So I've just taken a couple of days out, partly for this purpose.

In respect of food and drink my life has been stripped to the barest bones. I can no longer enjoy fine wine, a strong balti or a herbaceous pasta dish. Now, it is the simple pleasures of omelette, cabbage and a glass of water - actually very similar to the diet adopted by the prophet Daniel in the Old Testament.

Despite the fripperies that we enjoy today, Christmas is about remembering the very simple and impoverished birth of a special baby.

My affliction can be attributed to all the baggage of food and drink I have accumulated over the last 30 years. And the spiritual challenge for me has been to examine all the other baggage in my life and strip it away, searching for the essentials.

So whatever food I may eat and whatever discomfort I suffer, I look forward to a truly joyful season. May you share it too!

Sesame seeds

A simple bread and cheese lunch today as it's Christmas Eve. But we bought some special breads and cheese.

I tasted the poppy seeds on the bread and thought "these are rather sweet". They were sesame seed, of course, and that is forbidden.

Now I'm itching all over and have had to use anthisan cream as well as taking an anti-histamine.

Oh well, fingers crossed for Christmas Day! We've got a papaya starter and I imagine quite a lot of cabbage.


My list says Ovaltine is okay so I got it into my head that Horlicks is too.

As I wanted to get an early night last night and I was staying away from home, I had a cup of hot Horlicks. Not very successful at all. I woke at 3.30am am and spent much of the rest of the night running to and from the bathroom. It seemed to have an effect on the bladder.

Looking at the ingredients there is no obvious reason. It is barley malt which should be okay. However it does contain an unspecified vegetable oil.

I had a letter from the dietician saying she is still researching outstanding issues. These include rapeseed oil and redbush tea. From following some of the links that have been posted on this site, I discover there may well have been only one systematic scientific study of salicylate levels. As they can apparently vary quite a lot, depending on the soil - so the dietician said, this would seem inadequate.

I am guessing that rapeseed oil is okay but never asked about sunflower oil which is not on the list either.

Tuesday, December 19, 2006


Yesterday my wife proudly produced a leek and bacon cuiche. It was delicious.

Leek is okay so I blamed the slight burning sensation in my mouth on something I ate over the weekend.

Then, today, I had the rest cold for lunch and the reaction was a little more acute - and in fact has got worse all day.

"Did you put any pepper in this or herbs?" I asked. No, she assured me.

What about the base? What was that made from? Oh, I bought it. What, the base or the whole cuiche? The whole cuiche, leek and bacon, must be okay.

Well the contents have been thrown away and we can't find them. But if it was commercial, the chances are it had pepper, herbs and maybe yeast extract in it.

I've taken my first anti-histamine for weeks tonight.

Monday, December 18, 2006

Christmas and shampoo

We have been testing out Christmas menus, ie red cabbage, green cabbage and leak.

Yesterday for lunch I had plain chicken, nicely cooked cabbage, red and green, leak and roast potato. I was surprised then to get a mild reaction in the mouth - then I discovered someone had added a little bit of black pepper.

Shampoos and shower creams have become a problem. I have been coming out in streaks of red. This started with an Imperial Leather shower gel. When I studied the ingredients I found they included benzyl salicylate.

Then the same problem occured with Head and Shoulders. It's not easy to read the ingredients of these substances but when I did it was there - benzyl salicylate. This means I am going to have to check everything for salicylate. I'll probably end up going round the supermarket peering at all the ingredients - and they are in even smaller type on shampoos than on food.

This should have been the point at which I was salicylate free - about two weeks after seeing the dietician and about six weeks after the consultant identified the problem. It seems the closer I get to the goal, the more likely I am to suffer reactions.

The dietician's advice was that once I was free of salicylate I could start reintroducing food stuffs, maybe even in time for a glass of wine at Christmas. I still seem to be a long way from this. If I want a drink at a mealtime it has to be whisky and water.


I have discovered that papaya does not keep.

The second papaya I bought was rotting by the time I started it and although most of it looked okay, the flavour had gone somewhat funny.

They should clearly only be bought one at a time.

Saturday, December 09, 2006

Junk food

A trip out today so I drank Sprite, ate maltesers and had a double bacon cheeseburger. I have never had quite such an "unhealthy" burger meal before. Nonetheless, by the end my tongue was tingling. There may possibly be some real lemon in Sprite or maybe something in the burger.


I started the papaya. I cut one in half and it looked like a melon. So I quartered it and ate it like a melon, removing the little round seeds from the middle.

It tastes a bit like a cross between a mango and a melon, a good substitute for both. Maybe we should try making some papaya juice.

Tuesday, December 05, 2006

Salicylate free, taste free

A totally salicylate free diet is proving hard.

I have twice been out for turkey dinners. Even by avoiding stuffing and picking and choosing vegetables it seems hard to avoid the herbs that get into the cooking. Tonight's of turkey slices, brussels sprouts and roast potatoes was not particularly pleasant nor did me any good.

Sunday lunch was possibly the worst I've had in my life, consisting of hard, dry chicken pieces, undercooked cabbage and roast potatoes.

By Christmas Day I think we will have worked out how to make herb and pepper free gravy.

Last night I ended up having a sort of Chinese-Italian meal. Spaghetti topped with mince stir fried with soy sauce, cabbage, celery and potato slices. Not bad if I could work out how to make it a little juicier.

I have purchased two papayas but have no idea how to eat them. I don't dare cut one open for fear it will need hours of preparation. My latest purchase of bananas is nearly gone. Also obtained some cashew nuts which were excessively salty and pretty tasteless once the salt was washed off.

Thursday, November 30, 2006

The dietician

It turns out I am a beneficiary of NHS cuts. The dietician had her study leave cancelled and then, unbeknownst to her, a number of appointments made on her behalf. So two or three people received letters earlier in the week inviting them to the hospital.

This was all very well, but as the dietician didn't know she was meant to be there, she wasn't. She turned up eventually. More details later but in short I need to follow an even more restricted diet for a couple of weeks. Mushrooms, mangoes and onions have gone for a start and maybe even carrots.

Then getting out of the hospital. Easy you might think. Not with NHS car parking charges that increase by the hour. By the time I came out - after the delay - I had inadequate change for the parking machines. They do not take credit cards nor my £20 note. Nor were reception at the hospital centre. So a lengthy search ensued for change. The coffee shop in the hospital would not even sell me a banana as they claimed they could not change my £20 note. Eventually I found someone who had bought parking tickets in bulk and sold me one for a pound.

Wednesday, November 29, 2006

An appointment

All praise to the NHS! A letter arrived a couple of days ago giving me an appointment with a dietician this week. A good thing that I happen to be free - and that in fact a previous booking at the time of the appointment had fallen through. Like a cynic, I have been going round telling people it would be about four months, two months for the referral letter to be logged and another two months for the appointment.

I suppose I should be writing down a list of questions about all the foods not on the list.

What about bread? I've been mostly avoiding it because of yeast.

Olive oil is out, what about rapeseed oil, which I am using for a lot of cooking.

Caffeine is banned but decaf coffee seems okay. What about decaf tea and redbush tea? What about chocolate? It seems okay.

I was hoping to turn up full of health if a little slimmer than I was six months ago. I reckon I have lost about a stone and I was not especially overweight. But I had a Mexican tortilla tonight, wrapped around ham. Doesn't seem to have done any good. Nor did the Kentucky Fried Chicken I tried to eat a couple of days ago by removing the batter. My lips are starting to tingle and they haven't done that for a few weeks, not since I was advised to try the salicylate free diet. Then there was the box of chocolates that someone had for their birthday. Of course they are stuffed with nuts and coconut. So altogether it has not been a successful week.

Tuesday, November 21, 2006

Chunky chicken

We get cheap tins of chunky chicken in a white sauce from the supermarket. It makes a quick meal with rice and peas.

I'd been avoiding it because I was not sure what was in the white sauce.

I've also felt like I was getting there over the last few days, towards an allergy free life. I've been eating bananas, peeled pears and raw carrots and drinking decaffeinated coffee and hot chocolate and water. I've tried decaf tea and also redbush tea (which I adore) but am not sure about those two. I'll have to see what the dietician says. I haven't taken an antihistamine for days. I even find I don't need caffeine to stay awake.

But this chunky chicken meal really caused a reaction tonight. So I went back to look at the ingredients. Wheat? Well I'm okay with that now. It wasn't wheat. Celery, that's okay now. Then, tucked away at the end, yeast extract. Yeast extract, I ask you. That's on the proscribed list.

It's odd that the closer I get to my goal the more severe seem to be the reactions to small breaches of the diet. I was eating quite a lot of this stuff, such as apples and fruit juice, when I thought it was wheat and even when I realised it was also tomato..and then other red fruits..and then celery (which it wasn't).

Sunday, November 12, 2006

The Hunger/ Back on the pills

Coffee was a bad idea as was drinking a Welsh cream liqueur on Friday night.

Saturday was wretched and decided me to go back on to the anti-histamines. This has seemed to help.

Found a number of websites about salicylates although many tend to repeat the same information.

This one has a useful and detailed list of the salicylate content of food.
Among its helpful revelations is that decaffeinated coffee is okay. Some of the websites said some rather disturbing things about this condition. Not sure if they can be trusted as sourcing is limited and authoritative information very patchy.

Normally I would kill myself rather than join the Saturday afternoon shopping traffic but I was so desperate and hungry I went to the shops and bought loads of bananas, some lemon and banana yoghurts (all helpfully yellow) and a carton of mango and passionfruit juice. Not sure about the juice. Both mango and passionfruit are okay but the lists also seem to suggest that all fruit juice is dodgy, presumably because it is so concentrated.

I've dropped a collar size so there is some gain from the pain.

The pills seem to mask minor reactions. One of my children grabbed the banana yoghurt. So much for that.

Friday, November 10, 2006

Giving up coffee

It's hard, hard, hard.

I'm trying and tonight was my first coffee for well over 24 hours. I know now I'll pay the price in the morning.

I woke up today with a sore left eye and a painful left leg so resolved to make the effort to give up caffeine. I can't even switch to herbal teas as I've done in the past as most of them are also forbidden. It's water or milk.

Thankfully we had some pears and celery in the house this week. Having broken the wheat-free diet I am encountering all sorts of problems, for instance Kentucky style chicken. I'd been avoiding that but had it tonight. Of course it's stuffed with herbs so remains a problem.

I wonder how long the dietician's appointment will take to come.

Tuesday, November 07, 2006

Off and on the pills

Spoke to the consultant's secretary to me who relayed the message that I should continue taking antihistamines if I thought they were working. That seems to suggest they are meant to work for this kind of allergy.

I took one last night because I needed a good night's sleep. It worked reasonably well but did not really make any difference because it still leaves those gaps in the brain, in memory. I think I did okay today but I cannot be sure. Tried to wake myself with tea and, later on with coffee, but I am not sure they did any good.

She also asked if a salicylate free diet was working. I said it was early to say as I had only had the information on Friday - but I thought the list of salicylate-rich foods seemed familiar. On that basis they will refer me to their specialist dietician. No idea how long it will take to get an appointment on the NHS.

Monday, November 06, 2006

9pm and still waiting

9pm - no call from the consultant today.

I have decided to stop taking antihistamines on the grounds that they make me sleep incredibly deeply. I've had to use the bleep on my alarm clock to wake me and have needed loads of strong coffee to get me going. As coffee may be part of the problem, this may mean the pills achieve little.

However knowing that the pills aid sleep, there is going to be real temptation to take one occasionally if I need a good night's sleep.

I am also concerned about the long-term effects now. If I were to follow a salicylate-free diet, it might be very unhealthy in terms of heart and circulation. If I decide to tolerate a low level of allergy, what are the long term health effects? There has already been a link suggested to Parkinson's disease, which a member of my family has.

And what do I say to those who may have to cater for me?


A letter came from the consultant at the hospital on Friday - and it makes life complicated.

The blood tests have found nothing. The consultant suggests that the problem may be salicylate hypersensitivity, that is aspirin allergy.

We had excluded that at the beginning because I had taken aspirin without ill-effects. However he has supplied a list drawn up by the British Allergy Foundation of foods that contain high levels of salicylate - and there are an awful lot of them, most of them "healthy" fruits and vegetables.

Much of the list is familiar, some of it is worrying. There is avocado, coconut and almond. There is also yeast, possibly explaining why bread sometimes poses a problem. And there are oranges, peaches and green apples. So wheat and gluten are not problems, almost certainly. I can eat pasta, cake and pastry, but maybe not bread and not fruit cake or macaroons either. Coffee, tea and fruit juice are on the list as are potato skins. It's unmanageable - but I guess small quantities will not kill me and drinks do less harm to the mouth and throat than foods that have to be chewed.

He said to contact him which I tried to do so today but did not get past his secretary. She said they would arrange an appointment with a dietician.

I want to know whether there is any point in taking antihistamines now. She said she would ask him.

Thursday, November 02, 2006

Uncooked potato

It may have been the baked potato, which was large and one of the least well cooked potatoes I have had. My wife microwaved it first. That was not enough so I put it on for another five minutes but it still came out with a hard centre. What I tend to do then is to pour the fat from the frying pan onto it but, clearly, even that did not work.

The real nuisance is that I am now back to a double dose of antihistamine having avoided taking any yesterday (Tuesday). Since my prescription of levoceterizine has run out, I am using some one-a-days from Asda. It's not just the driving now that's affected by the pills, I feel a loss of sharpness that even strong coffee cannot shake off, like some brain cells are missing. I need to make an appointment to see my GP and get a prescription but I'm not quite desperate enough to justify the disruption to my life that this involves.

Wednesday, November 01, 2006

Rice and cabbage

A sudden and unexpected reaction in the mouth tonight after eating what seemed to be a simple meal of omelette, baked potato and bacon followed by peach and apricot yoghurt.

This prompts me to do some more intense research on tomato allergy.

Some people call this 'oral allergy syndrome', suggesting it is probably a little less dangerous than anaphylaxis.

One clinic lists the following: apple, peach, celery, tomato and cherry.

This well-sourced website links a number of substances to tomato allergy.

This list looks familiar: latex, avocado, chestnut, and banana.

This list is especially disturbing: tomato, potato and latex.

I am not aware of any latex allergy. But of these three lists, I had potato and peach tonight. I have eaten both in substantial quantities in the last few months without noticing any problems.

So does this mean I am continuing to pick up new allergies? Or have potato or apple or something similar been responsible for mild symptoms for some time?

This is all very alarming as the one thing I have been able to achieve over the last few months is a healthy diet with loads of fruit and vegetables. The way things are going I will end up living on rice and cabbage.

Tuesday, October 31, 2006


I am beginning to fear that chocolate is a problem. And that is bad news as I frequently snack on dark chocolate when working.

In the last 24 hours my inflamed eye has gone. The last time I ate chocolate was two days ago and the rest of my diet has been plain in the extreme since then.

So tonight I am trying the gluten free fruit cake slices that I bought a couple of a weeks ago again. At the time I blamed them for an allergic reaction but it may have been the chocolate macaroons I bought at the same time. No sign of any reaction so far.

If I stay clear of problems for another couple of days, I am going to start trying ordinary wheat again.

Six weeks and still no results from my tests.

Tuesday, October 24, 2006

Oh dear!

A new study of male professionals suggests that a drink of alcohol a day cuts the risk of heart attack by as much as 50 per cent.

Even more disturbing, out of 100 heart attacks amongst a group of 9,000 professionals, as many as 25 may have been the result of not drinking.

The study is a valiant attempt to tease out whether alcohol really is good for the heart or not. It's in the Archives of Internal Medicine this week and all the men studied had really healthy lifestyles, daily exercise and diets of fruit vegs, fish and chicken. But what is not clear is whether the researchers took account of the reasons why men do not drink.

For instance I have had to give up alcohol because, combined with antihistamines, it knocks me out. So if I want to drink I have to not take an antihistamine for 24 hours - as I did at the weekend. No chance, then, of a daily drink.

But if I were to suffer a heart attack, God forbid, it would not be because I don't drink, most likely. It would be because of the inflammation caused by the allergy.

So it may be that many non-drinkers are non-drinkers because of some other underlying health concern.

Monday, October 23, 2006

A moment of desperation

One month and nine days since my hospital appointment and still no results from the two phials of blood they took from me.

I bought some "gluten free" fruit cake today and have been knocked back quite badly. So either it is the fruit in the cake - and there seemed nothing innocuous, only orange and lemon peel. Or it is their using an unspecified "vegetable oil". The alternative is the gluten-free brown sauce I had with my dinner as it contain chilli - and I am told this is the same food group as tomato.

All very frustrating as with the exception of the extended "cold" and a sore eye I have been largely free of symptoms for days. Nil in mouth.

Meanwhile a government minister was celebrating a million patients using the electronic Choose and Book system I encountered when I saw the GP many months ago. I must make another appointment a) to chase up the test results and b) to renew the prescription. I am back to the pharmacy anti-histamines and am having to take great care driving round roundabouts as a result. It seems very difficult to judge traffic on roundabouts.

I guess it was better than waiting for the GP to write and then for the hospital to write back. But it was far from everything it is cooked up to be. They sent me an appointment time, no consultation, and then they changed it twice. The GP gave me no choice of hospital. The doctor at the hospital was great but I suspect very busy.

Wednesday, October 18, 2006

Information so hard to find?

There have been several reports about allergy treatment and the risks faced by sufferers this week and I will come to those at some stage.

But I am intrigued by an announcement yesterday by the British government that it plans to develop "information prescriptions". Presumably the idea is that a GP writes a patient some kind of code, or generates a page, with a list of information and support sources, including web-based discussion groups.

Then there was this bizarre statement from health minister Rosie Winterton: "We are all busy people. We don't want to have to trawl through endless websites or publications to find the help we need. We want to be able to lay our hands on the right information and advice as quickly as possible, and this is even more important when you have a long-term condition and every minute is precious."

Well, I am as busy as anyone and I have found time to do just that - to trawl through endless web sites. Perhaps Ms Winterton has never been ill and does not appreciate how a long term illness simply takes over your life. Everything changes, like it or not, and you don't have to be self-obsessed to realise that.

Then there is the question about laying your hands on the right information. It is of course a problem. I tried the NHS Direct web-site, the government's main information portal at the outset, and thought it was useless. It is certainly the case that a referral to the right charity can unearth a lot of information. But then typing two words into Google can also do that. Has Ms Winterton ever used a search engine?

Apparently the scheme is being piloted. That would suggest the information on offer must remain pretty limited. There is not enough detail in the announcement to know whether the prescription includes access to computers and broadband for those who do not have them. I doubt it.

So they have a dilemma. On the one hand some people have access to very little information and do not know how to obtain it. They will need to be led by the hand. Others have access to too much information and may be led astray by crank web sites. They might benefit from a bit of training and advice on how to sift information and check sources. I bet this is not happening. I bet all we are getting is a glorified version of NHS Direct as in general any government initiative of this kind is about controlling information, not releasing it. That can be dangerous.

Sunday, October 15, 2006

The common cold

Earlier I wondered what would happen when I got a cold.

After all, the daily antihistamine is also a basic cold remedy.

Now I can answer the question, I think. For the Aswan Dam burst and the Nile flowed forth for five days - or so it seemed.

Of course it may not have been a cold. It came on fast on Tuesday night following the meal in which I was fed tomato juice disguised as a casserole. So it might have been an odd kind of hay fever. It was certainly different from any kind of cold I've had before and at the time it started I upped the dose of antihistamines to try to counteract the dose of tomato I'd been fed. However it's not the hay fever time of year and seems an odd reaction to a tomato casserole.

Normally a cold is somewhat of a battle and normally I, for one, start off with flu-like symptoms, aches and pains and general misery, before succumbing. This one came on fast and furious without warning. I did some more investigations on the web for clues. Nobody seems to have much to say about this phenomenon - except that there are a number of useful explanations of the difference between a cold and hay fever to be found.

Certainly I had a sore eye for a couple of days. A sign of hay fever. Against that, it is the season for colds and in fact my son seems to have caught it from me. Perhaps it was a combination of both - and a cold is a kind of allergic reaction to a harmless virus - or perhaps the antihistamines served to speed up the process. Five days later it feels like it's on the way out, thankfully.

One month after my blood tests, still no sign of any results arriving.

Wednesday, October 11, 2006

Favourite meal

Baked potato, omelette and bacon cooked in rape seed oil.
Satisfying, filling and absolutely no side effects.

Today I was at a function and had a stew like concoction with meat, carrots and potato slices. The (clear) gravy tasted oddly sweet and fruity and I'm pretty certain it was a tomato based sauce. Certainly judging by the ill effects. It was that or chicken tikka massala or a vegetarian dish with crumble topping. Took three antihistamines when I got home, one after the other as the problems kicked in. That's my limit for 24 hours.

Sunday, October 08, 2006

Toothpaste free

Well 24 hours after giving up toothpaste I'm feeling a great deal better, in spite even of going out to lunch today.

It could be the impact also of taking three anti-histamines yesterday - right up to the doctor's limit. But I have taken none today.

I have checked several toothpaste tubes but none contain allergy warnings. In fact the best one, Sensodyne, seems to skirt around the subject. "As with all toothpastes," it suggests "if it irritates your gums stop using it." Sensodyne is of course formulated to protect "sensitive" gums.

I wouldn't like anybody to believe allergy is the main cause of gum disease - but it never seems to be mentioned as a possible cause.

We need a campaign to get allergy warnings on toothpaste. Amazing that one of the substances that enters the mouth most frequently contains none.

About cellulose gum: it is generally regarded as a gluten free substance and may even used in some free from products. Sources include cotton and wood fibre - would you believe! That does not seem to suggest there is much control over the content of it. If anybody has any inside information, let me know.

More updates on toothpaste later.

Saturday, October 07, 2006


My respite did not last long as the inflammation of the eye has got progressively worse over the last two days.

My diet has continued to be pretty strict - with the exception of the Chinese takeaway the other day.

It is possible that other fruits are involved. I'm staying away from the red ones but, if it's something I'm eating, it is hard to see why the eye should suddenly flare up again without other symptoms.

What about something that goes in the mouth but not down the throat in great quantities? Something that you consume at night and first thing in the morning? When I woke up with a sore eye today - which got worse - I realised I had never even thought about toothpaste, even though I'm now starting to blame the allergy for some persistent gum disease.

A quick search of the net reveals a lot of confusion here as there are a number of groups keen to blame additives, such as fluoride, for problems. Well we have fluoride in our water - and that suggests there would have been no respite if that was the problem.

Very hard to establish what's in toothpaste. But "paste" may provide a clue. Paste used to be made from flour. A search of the ingredients of my current paste reveals a substance called 'cellulose gum'. suggests a problem if you have maize intolerance. This is a US site and if manufacturers are using corn starch from maize they are just as likely to be using it from wheat, surely.

The other disturbing thing is that I could have been aggravating my teeth problems for years by using toothpaste. I still feel sore, financially and psychologically, about that lost tooth earlier this year.

So I'll be brushing my teeth with plain (fluoridated) water for a while. I'll let you know of the results.

It is now nearly four weeks since my blood tests and no sign of any results yet.

Thursday, October 05, 2006

A red Smartie

This week I thought I was getting things under control, sticking to a diet free from all the suspects. I even faked taking the bread and wine at church. God understands!

I've even reverted to organic chocolate - although I could see nothing in the ingredients of the dark chocolate I was eating to cause concern.

There have been background symptoms but nothing obviously severe. Most worryingly the slight inflammation of my left eye returned. But I've been able to stick to a single antihistamine daily.

Then a child offered me a Smartie. I could not say no and took a single red one. It's not like a nut and I did not choke - but the impact was still fast.

Not sure either about the Chinese takeaway we had last night.

So today my dodgy eye is quite inflamed, probably more noticeably than ever.

Friday, September 29, 2006

New Scientist hype

The New Scientist has been engaged in a great deal of hype about allergy cures recently. Odd for a respected magazine of science.

This week's is a report on the work of a company in Zurich. These people are trying to tweak the immune system to believe it is being attacked by organisms called mycobacteria. Apparently we do not encounter these very often.

They are reporting some success with initial trials of patients with house dust mite allergy and with pollen allergy. The question is whether this drug could be a permanent cure. Apparently its developers believe it could be.

However a few weeks ago the same magazine made a big deal of a guy who went to the British Association for the Advancement of Science's annual festival and talked about developing a vaccine within ten years. Maybe the Swiss people contacted them after that report.

Forgive my scepticism but long before I ever suspected I had a problem I knew a scientist who was developing an allergy vaccine. It was brilliant science but so far as I know never happened - even though a biotech company was set up to develop it.

The recent fiasco in London at Northwick Park Hospital where six human volunteers nearly died after taking an experimental immune system based drug highlights the problem.

The Swiss drug appears to have got beyond this stage but the reality is there is a whole spectrum of promising medical science around the immune system that is advancing much slower than was ever feared. It is because we are dealing with a massively complex, little understood system and tinkering with one bit can have unforeseen consequences - or simply prove a lot more difficult than thought.

I will post a link to the story when it is on-line.

Allergic to communion?

A heck of a week as I've been taking double doses of anti-histamines daily and that has meant a great deal of difficulty waking up in the morning.

I am bemused as to what it could be as I have stuck rigorously to my diet all week. Most disturbingly the problem of an inflamed eye which I had before diagnosis - and doing something about the problem - has returned, on and off. There is also inflammation and ulcers around the gums. More of that on another occasion perhaps.

I've been to a couple of buffets and been as cautious as possible.

Here are some clues:
communion bread - the merest crumb;
communion wine;
gluten-free gravy - contains unspecified vegetable protein;
pink salmon;
avocados with rape seed oil, daily for lunch.

As I cooked an omelette and bacon the other night with rape seed oil I tend to discard that.

So really bad news, it looks like avocado. Certainly today the symptoms seemed to return straight after lunch. That's bad news and suggest that new allergens are popping up sporadically. Can that happen? Surely it can as the whole business has just occurred out of the blue.

At the moment I am surviving mentally by believing it's all not going to last for very long, like flu. Because it is beginning to feel as though there may be very few foods I can eat. And what am I going to do about communion? Buy gluten free bread for the church every week - it would have to be weekly because the stuff does not last. In fact a sealed loaf I bought the other day was already mouldy.

As we are now in autumn, I am also wondering what happens when I get flu or even a cold. After all I'm already on anti-histamines. Are they symptomless or what?

I had a pleasant letter from the specialist earlier this week, copied to the GP. Clearly he tends to favour tomato as the main cause. He also suspects that tomato exclusion and even wheat exclusion will not be enough. Oh dear!

Saturday, September 23, 2006

First spag bol fatality

The first known death from tomato allergy was apparently less than two years ago when Raya French, aged 37, from Kent, UK, died after opening a tin of spag bol.

It makes you pause for thought. When I first suffered mouth problems I didn't for a minute suspect tomato nor did my GP. I've had a letter from the consultant now and he clearly thinks tomato is the main suspect. I still think wheat is also a factor for me - and I carried on consuming tomotoes and tomato sauce for some time after going to see the doctor. It is as if tomato kicked in as the worst problem a bit later - and it does seem pretty lethal.

Some speculation: what if something has happened recently to make common foods, like tomato, lethal? Genetic modification perhaps? It's still far-fetched but I, for one, am going to bear it in mind.

How do I know wheat is still a problem? My wife cooked a rice and mince concoction the other day and was quite convinced it was okay. Once I had removed the hot dogs I though so too - largely because I was sure she said she used wheat-free gravy. So it was little surprising that symptoms began. But then she admitted to using Oxo - first listed ingredient...wheat flour.

Either way I'm definitely allergic to Italian food.

Tuesday, September 19, 2006

On the road

I've been on the road for a couple of days and this poses a whole new set of challenges.

I thought I would grab a motorway meal before arriving at my destination on Sunday. When I looked at the choice I thought a chicken curry would provide a safe alternative. Rashly I ignored the redness of the sauce as I ordered my chicken tikka massala. Of course a curry conceals the effects in the mouth and the throat - but when these lingered for the rest of the day, I realised I had made a mistake.

I was chatting to someone yesterday and he confirmed for me that tikka massala has a tomato base.

Then I went for a meal with some people at an Italian restaurant. As I appear to be allergic to all Italian food that was going to be challenging.

The menu was diverse and I had an avocado and seafood salad and a lamb dish. I had to drink carrot juice and resist the wine. I thought I was safe and took an extra anti-histamine beforehand to ensure.

But it was also clear these people like their tomato and I had to remove sliced tomato from the salad. Maybe that explains the bad night I had - or maybe it was the large glass of wine I accepted at the end of the evening.

I've also become concerned about the levocetirizine. I've gone from sleeping excessively deeply to sleeping lightly, yet it doesn't seem to prevent occasional and unwanted episodes of severe drowsiness. Today I reverted to one of my pharmacy tables. I wonder if I can mix and match. I will have to take a levocetirizine tomorrow when I am driving home.

Friday, September 15, 2006

At work

Well, I've taken the plunge at work. I had to after starving through a buffet today as it consisted entirely of sandwiches, wraps and somozas.

The kitchens and other key people are being told I need wheat and tomato free if I am attending an event with a buffet. As I occupy quite a senior position this will be done. All I need is a bowl of fruit or a banana and apple.

I've seen a consultant!

It was all a little tight as the roads flooded yesterday morning and the NHS is notorious. Miss your appointment and you could be waiting months for the next.

I failed to make the check-in ten minutes early, as ordered, but was there at 930 with seconds to spare. It took a while to find the "check in" desk on the second floor as the elevator only went up one floor. The appointment was in a new Treatment Centre.

The receptionist was polite and efficient but unsmiling and unreassuring.

The doctor was terrific. Almost his first words were "these guys are often brief but this is one of the briefest I've had", about the GP note.

He gave me a demonstration on using the Epipen and stressed that "nobody has ever died who carried an Epipen" and "I've never lost anyone yet and you're not going to be my first."

He ordered tests for about ten different substances and promised to call me if the tests threw up anything unexpected. We discussed anti-histamines and I said I was concerned I had been suffering losses of concentration when driving. He gave me a prescription for an alternative anti-histamine, levocetirizine, and told me that although they are one a day I could take up to three. Apparently had I lived across the local authority border he could not have done this but he is allowed to prescribe for people from my area!

Then on to the phlebotomy centre for a blood sample to be taken. The nurse - or practitioner, possibly, I imagine - took two phials of blood. I felt I should have offered a further pint for the blood transfusion service while we were doing it.

Unfortunately I thought it might be helpful to break my diet in advance of the appointment. So on Wednesday I had a brown bread sandwich and then for breakfast, just before going, two slices of toast.

So for about 48 hours I have had to put up with all sorts of things, including the pain in my eye - which I have not had for months. So I took an extra levocetirizine.

The drug is certainly an improvement. Its lack of side effects is a little unnerving. I've got used to sleeping very deeply and to falling in a sort of dreamland, which is so realistic that waking up can be incredibly confusing.

Saturday, September 09, 2006

Eating scraps

On Friday I was promised a buffet at an event and turned up to find sandwiches. I had a couple of pieces of lettuce and emptied the meat out of one sandwich. Then I realised I had also eaten a slice of tomato.

When I got home I found the rest of the family dining on Kentucky Fried Chicken. It's battered so forbidden. They had over-ordered on chips so there were some of them left.

But what can you throw together to go with Kentucky chips? In the end, desperate, I raided my old stock of chili con carne from the leader. These particular tins are thrown together with wheat flour. Still with chili, it can mask a lot of problems, including burning of the mouth.

So some sign of reactions but nothing serious, thankfully.

Tonight my wife insisted on having pizza. Great! She persuaded me to try cooking some quinoa - think that's spelt correctly - a South American grain like seed which a vegetarian friend recommended and is supposedly packed with protein and vitamins.

Made the mistake of trying the recipe on the packet, which suggested cooking it in orange juice with dried fruit. It sounded delicious. The stuff is meant to swell to four times its size, like rice.

The recipe said 30 minutes but after an hour, and several top ups with water, I gave up and consumed the mush I had cooked. Topped with cheese it was okay - although not worth the trouble. Next time I will cook it like risotto - in water with flavourings added.

With all that semi-cooked seed in me, I feared a tummy ache but it hasn't come, thankfully.

Anyway I have just found the Quinoa Corporation's site and nowhere does it suggest cooking the stuff in anything but water. Oh well, properly cooked quinoa is a treat waiting for me.

Tuesday, September 05, 2006

An organic health bar

I found something else I purchased several weeks ago from the "free from" section. This was a pack of wheat free breakfast bars. Normally these things are made from whole grain and are an incredibly healthy snack, especially for people who skip meals.

These bars are made from nuts and seeds and cranberry and are delicious. So I had one for a late night snack last night. Bear in mind, my lips were still quite bruised from Sunday's gateau - bruised is probably the best way the to describe the way they went. Well some 24 hours later there' s still tingling and a sort of swelling around the throat and tongue. Cranberries are of course a red fruit. So it's either the cranberries or something that was used to glaze the spare ribs my wife brought home last night. I'm going to finish those bars regardless.

There's getting to be too much I can't eat. And it's odd the way tomatoes seemed to kick in as a problem some weeks after the problems started. I've been unable to find any references to underlying illnesses on the Net, my substitute doctor - but who knows.

Eight days to the hospital appointment.

Sunday, September 03, 2006

Lapses of taste

A few weeks ago I purchased a gluten-free pot noodle - actually Mexican rice rather than noodle. I got it out for lunch on Friday and then realised it contained tomato. What the heck, I thought, I'm not wasting it and consumed it. So that afternoon my lips swelled etcetera.

By Sunday lunchtime, today, the symptoms had gone and my wife put a chocolate gateau on the table. Well, by now it's clear tomato is a problem so maybe it was always tomato rather than wheat. And I have not eaten chocolate gateau for ages. In fact I really miss it. So I had one slice and then a second. It was delicious, the most delicious thing I have eaten for months, although I could have done with cream and ice cream with it. My wife had purchased an artificial cream made of vegetable fat so I passed on that.

So my lips swelled this afternoon and my throat thickened and other symptoms showed themselves and now my tongue is starting to numb. So apparently I am allergic to Italian food, both wheat and tomato, spag bol and pizza. I wonder what the doctors will make of that.

Friday, September 01, 2006


Maybe I can breathe easy now. It's all a load of nonsense, according to a Professor Colver, from Newcastle today.

According to Professor Colver, in the British Medical Journal, most people with food allergies are in little danger and far too many people are being issued with adrenaline injectors (the Epipen).

He is referring to children (and over-anxious parents) but claims there were only eight deaths between 1990 and 2000.

At least one other professor, a Professor Hourihane, disagrees and I don't suppose the people who did the other research, showing the problem on the increase, would agree either.

Well, it's been fun having an injector all summer and quite handy for explaining why I seem to be nit-picking food sometimes. Two sticks of celery and two cherry tomatoes was quite a hard lunch to explain. My problem is I have no idea how bad things could have got - although one or two encounters with insects proved quite scary. Did the anti-histamines make a difference or did the diet or have I just been at the mercy of seasonal pollen?

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?