The End of the Diary

 

I have not updated this diary for some time.

This is because I now have a new blog, which brings all of my blogs together.

Go to The Anonymous Widower to see more of my coeliac posts.

E-Mail to Simon Mayo on Allergies

 

"You ask why more of us suffer from allergies.

Growing up in North London in the smogs of the fifties, who would have known that it was your allergy that was the problem. With me, I’m a coeliac (allergic to gluten) and wasn’t detected until a few years ago. With this allergy, the methods of discovery did not exist until about 1960. If they had, my father and grandfather probably wouldn’t have died as young as they did.

So with cleaner air and better methods of detection, it’s obvious that we’ll get more allergy sufferers.

A few years ago, I was part of a team that developed a device for asthma drug delivery and learned a lot about that disease. For instance, one of the major causes is open flames, smoking, sealed houses and carpets, which many of us have these days. Draughty country cottages with stone floors are so much better. I also read somewhere that the beautifully clean country of New Zealand has some of the worse asthma.

What should we do?

The work done on labelling foods is to be welcomed and we must lower levels of allergens still further and also eliminate cross contamination. But we should also bring all medicines under the same rules.

For instance, nearly all cough syrups contain wheat-derived glucose syrup and many tablets use wheat starch as the base. These actually make my illnesses worse.

I would also like to see it compulsory for all restaurants, cafes and pubs to label their food as to allergens. One chain, basically says that if you have an allergy, then don’t come here."

It wasn't read out, but note the bit about medicines. They must be labelled.

Interesting Article from the US

 

I was searching for something completely different and I came across this article from the US. It’s quite positive and states that in the US, they now accept that coeliacs are 1% of the population.

The Coeliac Scam

 

Someone pointed this blog entry out on the Internet.

There are two things in the original article that are wrong; most coeliacs don't get free prescriptions and nearly all of the GF stuff you can get on prescription is not worth eating.

I don't think I'd want to be his patient.

Exercise Performance and Glutening

 

My late wife, Celia, could run 5km in 25 minutes at the age of 58. I have never been able to do anything like that at all, so recently I have bought a rowing machine to try and improve my fitness.

I row about “4 miles” on the machine and typically it takes me about five minutes to perhaps five minutes ten seconds. I aim to do this twice a day, except when I play an hour of tennis. I should say that I’m not showing much improvement, but perhaps my body is past the point of no return. On the other hand, my real tennis handicap has improved since I started taking the extra exercise. I always used to tail off towards the end of the hour, but now I seem to stay in there.

About two weeks ago, I was accidentally glutened in a pub probably because of some balsamic vinegar. (Why can’t they all use Aspalls?) My performance dropped alarmingly for two days and it was probably four before I got back to my normal performance level.

This is not a definitive test, but it did show me the alarming affects of gluten on someone like me who is by no means supersensitive.

Blood Pressure, B12 and the Sun

 

I had my B12 shot on Friday and as she always does, the nurse took my blood pressure. It was absolutely normal for a sixty year old man. I was pleased. But a couple of years ago, it was all over the place in the winter. So much so, that I was measuring it every day with a machine from the surgery. I got the impression that this winter, I wasn’t that brilliant either, especially after the death of Celia. But everything in my body seems to have come better in the last few weeks as the sun has come out. I find that in the winter, I cough and splutter for perhaps half-an-hour or so when I start playing real tennis, but now I have no breathing problems and am ready to go. My handicap is improving too.

As a scientist and engineer, I wonder if others notice that the sun appears to calm their systems and make them more energetic? Could it be that the vitamin D is important to us? And if so, why?

Another curious thing, is that people, like the nurse, say I’m getting thin. She worries about me, so she also weighed me on Friday. I had lost a kilo since the last time she weighed me properly about two years ago. I wouldn’t have thought that was serious, but I have lost centimetres from my waist. That I suspect, is because I’m eating a bit less, as I’ve cut out things like cereals, as I find that if I have more than a small amount of milk, I react to it. So breakfast is more often fruit and perhaps a couple of Trufree crackers with honey.

Incidentally, I have taken to weighing myself regularly over the last month or so, as I want to keep my weight steady at around 61 to 62 kilos. One thing I notice is that if I weigh myself before I go to bed and then when I get up in the morning, the difference is almost half a kilo. Do we really sweat that much away?

Coeliac Sportsman

 

Hayley Turner now admits to being a coeliac. She’s a very good jockey. Note, that I did not use the word lady.

Cough Remedies

 

According to my pharmacist friend, honey, lemon and whisky is just as good. That’s gluten-free.

There’s been a story recently that has said that honey is better than the main ingredient of cough mixture.

Waitrose and Mobility Scooters

 

This was brought up by someone on the UK-Coeliac Yahoo list. I’m sorry but I can’t remember who.

However, Waitrose in Bury St. Edmunds have one and allow anybody to use it responsibly.

So don’t complain, point this out.

Coeliac UK Membership Fees

 

Coeliac UK membership fees are being raised.

These are not generally a problem for us on our gluten free list on Yahoo. If we don’t like them, we’ve got the Internet to get the advice we want. We are also pretty articulate and as others have said we get a lot of our answers from this group.

This tale was told to me by a barrister.

He had a client in his late 50s, who was coeliac and going through a divorce. Quite frankly, once they’d split the house and what little they had, he could just about buy a flat, but had nothing left for any extras. He was also computer illiterate, so he couldn’t turn to the Internet.

So not only was he now alone, miserable and broke, he could not really afford to get any extra information about his medical problems. Luckily his son is very much a brick and helps his father.

I believe that this is a variant of a very common tale.

Coeliac UK is useless to anybody like this.

The Closure of Frys in Bristol

 

This may seem rather a selfish post given that five hundred will lose their jobs with the closure of the old Fry’s chocolate factory in Bristol.

But I am a coeliac and very much enjoy the occasional Crunchie, which is one of the few readily available gluten-free chocolate snacks. They are made in the Bristol factory.

Will Cadburys be able to guarantee me that this little pleasure will stay gluten-free, once the product is made in another factory, where cross contamination may well be possible.

A Food Manufacturer’s Policy On Gluten

 

I know nothing about the preparation of food.

But I do know a lot about eating it and I’ve spent a lifetime marketing products of one form or another.

I am also a coeliac, which means I can’t eat wheat, barley or rye, so out goes bread, beer and pasta for a start. Studies show that one in a hundred of those in the UK are coeliacs. So if you include partners, children and parents, we are one of the biggest minorities in the UK, especially as the disease is no respecter of race, colour or nationality.

So it is in a manufacturer’s interest to take note of those, who need gluten-free food. Just as it is also important, that they look after those who through a lifestyle choice want to be vegetarians.

But needing gluten-free food or nut-free food for that matter is more important, as accidental ingestion can cause illness.

So what should manufacturers do :-

1. There should be a list on the company’s web site that shows what allergens are contained in their various products. Cadburys have this on the front page of their web site and can’t be faulted.

2. Products must be clearly labelled. These labels should also be readable by your average seventy-year-old, as for example coeliac disease is often not diagnosed until later life.

3. Products must contain a contact address and phone number.

4. Products should not contain gluten, where it is not expected. For instance, there are many products that contain gluten because it is in the wheat sugar used in the product for convenience.

5. Gluten free should mean gluten free and not the level defined in the Codex. Many coeliacs have been caught in this way.

6. Product formulations should not change from gluten-free to containing gluten without a warning label.

7. Products manufactured and sold in different countries should have the same formulation.

Does your company have a policy on gluten? And if so, how many of these points are currently in force?

Getting Militant

 

Seriously though, coeliacs must get more militant. When something like an article in a newspaper turns up, hi-jack it.

Other interest groups do it all the time. There was a poll for the greatest Mancunian and it was won by Morrisey from The Smiths with over 60% of the vote.

I won't comment on that poll, except to say that Joule was the greatest Mancunian.

Familial Hypercholesterolaemia

 

The Times today runs an article titled, Screen babies to ensure early detection of high cholesterol, say doctors.

This is a good idea, but the disease affects only one in 500.

I am a coeliac, which means that I am allergic to the gluten found in wheat, barley and rye, so no beer or bread for me. It is not a serious disease for me, but it does lead to increased levels of cancer if undetected.

Serious studies have shown that one in a hundred of the UK population are coeliacs.

I was not diagnosed until I was 56, but I would not have suffered a lifetime of small medical problems, if such a blood test had been available when I was a baby. Incidentally, my doctor at the time, Dr. Egerton White, tried to diagnose the reason I didn't thrive, but the medical knowledge available meant he was unable to.

Now sticking to a gluten-free diet, I feel younger at 60 than I did at 50. I also have no migraines, stomach problems, skin problems and dandruff, gallstones, joint pains and many other ailments caused by undiagnosed coeliac disease.

A simple blood test would improve the lot of many.

Letter in Belfast Telegraph

 

The following letter appeared in the Belfast Telegraph

Coeliac sufferers in need of understanding

Wednesday, August 01, 2007

As a coeliac, I read with more than passing interest Dr Dunn's statement that coeliacs are entitled to free prescriptions and free food (Belfast Telegraph, July 6).
While as the Coeliac Society UK noted that he was wrong on both counts, what is more worrying is that he is the chairman of the BMA GP committee.
What chance do people have of 1, being diagnosed, and 2, getting the help they need if the top GP is so ill informed!
How much does he know about this unbelievably difficult disease and its consequences and the lifelong adherence to a diet which is practically non existent in the outside world?
I expect he knows all about vegetarians (which is a lifestyle choice!), as it seems does every manufacturer, but let him try a gluten free diet (coeliac is a disease) for a week and see how he fares.
Maybe then coeliacs will get the help they need and deserve.
Appalled Coeliac

Bio-Fuel

 

I read this article in the Sindie on Sunday and I wonder if this is going to cause problems for coeliacs as it appears that the US is going to turn an awful lot of their maize over to the production of useless biofuel. So if there is a shortage of maize, does this mean that a lot of products will substitute wheat for maize.

I shall be watching out, as all too often food processors, go for the cheapest rather than the best option.

This is my reply to the Sindie.

Rupert Cornwell in his column on Sunday, talked eloquently about the rush to biofuel using maize in the United States and how it was not good for the world in general, for the environment, for the production and price of food and everybody except those addicted to their overweight and underefficient vehicles.

I am worried about another consequence of biofuel.

Like 1-in-100 of the population of the UK, I am a coeliac, which means I’m allergic to the gluten in wheat, barley and rye. So that means I can’t eat bread, beer or pasta. But I can eat a wide and varied diet that keeps me healthy.

Food manufacturers and processors, especially in the UK, have over the last few years made great strides in removing gluten from their products, mainly by the use of maize starch. Because of biofuel, they will now find that the price of this basic ingredient will rise steeply. So will revert to cheaper gluten-based alternatives, thus limiting the diet for many of us?

I hope not.

Disease...?

 

I always say I’m a coeliac, as disease is very negative. A lot of people describe themselves as asthmatics for example.

If anything we have a non-disease, as in most cases, the symptoms can be completely got rid of, by a simple diet.

Food Labelling

 

As a coeliac, all I want is the allergies clearly labelled.

What really gets me though, is when they change the recipe and something goes from gluten free to containing gluten.

Height Problems and Coeliacs

 

I was very small and was not checked for CD in the late 1940s as there was no test available to the GP and the local hospital. However, in the end I seemed to grow for longer and managed to get to nearly five foot eight. My wife always says I’m taller now, than when we met.

So don’t worry too much, in most cases you do seem to end up at the right height. I fit the formula for males of average parent height plus four inches.

Thoughts On Gastroscopies

 

There are two views on gastroscopies; good and bad.

I didn’t find it a bad experience and I had a throat spray rather than a sedative for it. But I did have a very good doctor. It was a bit painful at the time but after ten minutes or so, I didn’t feel as if I hadn’t had anything done. Others have felt otherwise.

I wrote it up in the diary earlier.

http://www.jamesmiller.com/coeliac/2003/10/my-endoscopy.html