The omega syndrome

I've been trying to make sense of all the new information that has emerged from the discovery of Samter's Triad. If Wikipedia and one or two other articles are to be believed, this is quite a well researched condition.

The following is an entirely unscientific account of the situation pieced together in my head over the last 24 hours:

The salicylate hypersensitivity seems to be caused by an interaction of salicylate and omega-6 fats, perhaps only some omega-6 fats as it's a substance called arichadonic acid. This interaction leads to excessive production of inflammatory substances called leukotrienes. So it seems the problem we have is not with the body's handling of salicylate but with its handling of omega 6.

Omega 6 and omega 3 are essential fatty acids, found in various mixtures in most oils and fats. Sunflower oil is rich in omega 6 and rapeseed oil in omega 3.

It's the leukotrienes that cause a range of allergy-like symptoms. Unlike pure allergy, however, they may not represent an immune reaction. Singulair works by blocking them - so must be pretty good.

So the worst thing possible would be a diet rich in omega 6 and salicylate. The ideal diet would be low in omega 6 and zero salicylate. And a low salicylate, rich omega 6 diet might also prove not very effective - and that may explain why attempts to reintroduce are not very successful.

Now I've been avoiding sunflower oil and all unspecificied vegetable oils, especially margarine, because I thought they might contain salicylate. And I've been using rapeseed oil because I thought it was zero salicylate. So that's just a lucky coincidence.

Interestingly a couple of weeks ago a bottle of sunflower oil popped up in our shopping and that was about the time I got terrible rheumatism of the neck and shoulders. Last night I went to a function and had lots of cheese, ham and egg sandwich. This morning I've woken up with a sore eye and other minor symptoms. Good chance they were spread with margarine.

Of course omega 6 is found all over the place. The really bad news is that it's rich in cashew nuts, which are the only salicylate free nuts. I've been relying on them for snacking and quick lunches, although I must admit I've had my doubts about whether they are okay.

So what would be the impact of trying to eliminate omega 6 from the diet? Apparently it's an essential fatty acid - that means you have to have it in the diet. If you follow the links through Wikipedia you come to prostaglandins and it becomes very unclear how important they are. I think I read that omega 6 deficiency leads to hair loss, dry skin and possibly increased prostate cancer risk. Dry skin sounds familiar.

But if the body isn't handling omega 6 well in any case and is wrongly converting it to leukotrienes rather than other substances, are we already sufferring from the effects of omega 6 deficiency?

Wiki-browsing leads me to a biologist called Ray Peat who suggests there may be other ways of compensating for essential fatty acid deficiencies. I'm posting the link without even having read his work yet - but will be browsing it.

I promised an unscientific run-around. If you're an expert, I'd welcome your comments but do try not to make them too technical.

A name!

There was a rather mawkish if notable episode of the Golden Girls when one of the women was supposed to develop chronic fatigue syndrome. This is a fairly controversial condition and the episode - or may be several - documented this woman's battle to get her condition recognised. She didn't find a treatment but eventually somebody gave it "a name" - it might have been CFS or the more fancy name of myalgesic encephalitis (I think that's right).

So imagine my joy at finding a fancy name for salicylate hypsersensitivy. I was browsing the web looking for information on Singulair and came across it. Here is the Wikipedia entry - Samter's Triad.

Now Samter's Triad is only one kind of salicylate allergy but it tells the story of how this is a monster with many heads.

Samter's even has two other fancy names,Widal's triad and Francis' triad. It is I think regarded as a kind of asthma but look at the history of it.

It can start with a stuffy nose - that's been a problem all my life. Then you get nasal polyps - growths on the nose. I wouldn't like to admit to this but there's certainly something there, not too bad thankfully. Mercifully I didn't go on to develop severe asthma - although mysterious chest pains were part of the panoply of odd symptoms that were around before I eventually got pushed into going to see the GP.

The wonderful doctor who treated me might have been even quicker with a diagnosis if he knew about Samter's Triad.

More on this to follow, I think.

Not decaf

I went to a couple of meetings last week at a venue with a coffee machine, serving filtered coffee. I was pleased to see it had sachets of decaf.

The first day, somebody got the coffee for me. Later on I was surprised to find myself surprisingly awake and even hyper. There were also odd spasms in my tongue and that tightening of the throat. And my stiff neck got not better. I wondered whether the person who got the coffee had forgotten I asked for decaf.

A couple of days later I was back at the same venue and got my own coffee using a decaf sachet.Within hours big red spots were erupting on my arms, my vision was going and my left eye felt like it was going to pop out of its socket.

So I wonder whether decaf is always decaf. What quality control is there?

I had to go to a party over the weekend so I took Singulair daily for three days and it's almost cleared up.

Caffeine

...Then I went to a meeting this morning and the only drinks on offer were tea and coffee in flasks. No water and certainly no decaf.

Eventually I put a dribble of coffee in the bottom of a cup, topped up with milk and stirred in some sugar - to make a kind of milk shake. It's the first time I've knowingly consumed caffeine in a year, even if a small amount.

My throat started closing almost immediately. Hours later, after taking Singulair, my throat is still sore so I don't know whether it's the caffeine or flu.

Not so comfortable

I was clearly a little complacent when I reviewed the events of the last year over the weekend. I woke up yesterday with a stiffness around the neck. That's not a new problem - it's been coming and going all year and some people might say "stiff-necked" describes me well! I've been developing upper body exercises to keep me supply around the shoulders. Why it came on this year is a mystery - is it allergic inflammation or a problem caused by something missing from the diet?

My feeling is that taking Singulair has helped to resolve the problem sometimes, suggesting it's an allergic inflammation. I did so yesterday but unfortunately I moved my head sometime during the afternoon and pulled a muscle. It meant all yesterday evening I could barely walk, talk or even move without screaming in pain. I took two paracetamols - that's acetaminophens to Americans - which seemed to help. Today my neck is very stiff and wedged to one side.

I have a second theory today because I'm also quite cold and shivery. We've had a cold spell and a fall of snow but the house is not that cold. Maybe it's a bout of flu. As with the common cold, it may be hard to tell what's happening. For the past couple of months I've mixed with people with colds and not caught them - that's unusual for me and I guess is the result of an over-active immune system. I wonder how Singulair affects this - is it damping the immune system? Unfortunately I seem to have lost the patient information leaflet. Maybe I can find a down-load.

One year on

It's one year and one week since, almost overnight I gave up coffee, wine, beer, fruit juice, oranges, Cox apples, peaches, jam, marmalade and avocado. I'd already given up tomato and had spent six months on a wheat free diet, losing the best part of a stone while doing so.

The discovery the problem is salicylate rather than wheat and other odd fruits meant I could resume eating ordinary bread, pasta and cereals. But almost all sources of vegetable matter in my diet were gone. I've had to live on cabbage, leeks, celery, bananas and Golden Delicious apples - and every day I count to ensure I get my government-prescribed "five a day".

Looking back, I can see how we've adapted our diet. Sunday lunch is now largely salicylate free - and is okay. Gravy no longer comes in powder form or cubes but is made from scratch. Soy sauce is amazingly useful and highly flavoured - combined with cabbage it makes a pasta sauce and I used a similar combination the other night as a substitute chili with baked potatoes.

Montelukast (or Singulair) is a great find by the consultant. It allows occasional indulgences. The other night I went out to a meal and managed to eat two slices of a cheese cake. Eating out is still embarrassing - especially when the wine flows. Iced water's not quite the same.

The diet sheet changed a little in the first few months. I note that the first one mentioned yeast - and that led me to keep away from bread for some time, as well as other products containing yeast. The dietician persuaded me that was wrong so I eat bread normally - but not a lot of it. It was worth losing weight last year.

Recently I tried papaya again. Although it's on sale all year round, it seems to be a seasonal fruit. It was good a year ago and has been great treat this autumn. But by Christmas Day it was hard and unripe and stayed that way for most of this year.

My taste buds have been sensitised. A little while ago I promised some fantasy menus and maybe I will - but in truth I'm quite happy with this diet based on chocolate, bananas, cabbage and soy sauce. I now reckon I can taste the tiniest grain of pepper in food - and that generally means something's wrong.

So those fantasy menus! Where to begin? Pizza, curry, chili, bolognese, Chow Mien.....

Singulair

I think I'm getting the hang of this drug now.

The consultant said it should be taken about three hours before going out to a meal. I reckon between 12 and 24 hours is more like it.

Yesterday I went to a function and was surprised to find canapes - that's snacks - being served in generous proportions. I hadn't eaten and was hungry so I took what I could.

This included rice balls, fish of various kinds and chocolate eclairs. Also something with a little roll of beef in it. The fish had lots of lemon in it - and I try to avoid lemon. I took the pill afterwards and then searched for something edible at a railway station.

At Marks and Spencer I found a sandwich made of Wensleydale cheese, lettuce and caramelised carrot chutney. That seems innocent enough.

There were some fairly unpleasant effects in the hours immediately following this adventure and I had to spend some time in the bathroom. But today I have been fine - no itching and my skin in pretty good condition. I can only attribute it to the Singulair - impressive even if it takes a while. And the side-effects are much fewer than with anti-histamines. No deep sleeping, weird dreams or "hangover".

Jack Daniels

According to my list, whisky, gin and vodka are the only alcoholic drinks I can take.

I liked whisky but have been bothered for some time it doesn't seem to do me any good. I'm used to drinking Scotch whisky, preferably Glenmorangie or some such, and last Christmas everybody gave me bottles of it.

Recently I've been trying out American strains, mainly Jack Daniels. I don't know much about this but undoubtedly Scotch is richer and more flavoured than Jack Daniels and this is apparently because it's matured in oak caskets and distilled using peat - or something like that.

Now because only about one scientific study has ever been done of salicylate levels, the odds are it used American whisky. Maybe Scotch picks up salicylate from its caskets, peat and other natural processes.

So on Saturday I went to a party and drank Jack Daniels all evening, quite a lot I have to confess, roughly speaking as much as I'd normally drink in a month. I did take a Singulair earlier in the day and later wondered whether I should check more carefully whether it mixes with alcohol. Sunday - no symptoms, no hangover. So it looks like those bottles of Scotch will make good Christmas presents for other people this year.

Dinner party

We threw a dinner party at the weekend and one of our guests was Canadian.

We all shared the same main course, a chicken casserole. It was delicious, soft succulent meat in a creamy sauce. Our guests ate our crispy cabbage/leek vegetables as well as carrots and brocolli- which I could not eat.

My starter was different from the others, papaya rather than melon. But we all shared a chocolate pudding with dessert. The guests had wine, I drank whisky.

So we've now established it's possible to produce a highly edible chicken casserole, certainly for Canadians. I'll share the recipe when I can get it off my wife.

Sunday afternoon

Sunday afternoon and I would kill for a cup of redbush tea.

The first anniversary of this diet approaches and very soon I'll be putting together some fantasy meals. I've enjoyed my diet of cabbage, bananas, water and cashew nuts (...and one or two other foods) but every so often something reminds me what I'm missing...such as that Sunday afternoon craving for a cup of tea.

By last week life was at full swing again after the summer holidays and I went to a couple of catered meals. The consultant had suggested that a tablet of Singulair three hours before such a meal might minimise its effects. On Monday it was a steak and kidney pie with a suspiciously sweet sauce - almost certainly made with tomato. On Tuesday I tried a chicken and mushroom pie. Let's just say it was all too much for the Singulair. So back to being careful again.