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

Celiac in Spam

 

Not that spam, but the Internet one.

Completely off topic and perhaps rather sad that I checked, but it appears that about 0.1% of spam messages contain the word celiac.

Why are they no Coeliac Sportsmen and Women

 

I’m a coeliac like one in 500 of the UK population. That means I’m allergic to the gluten found in wheat, barley and rye. So that means no beer, bread and pasta for me.

It’s surprising that there are no sportsmen and women with the disease, as after all on the law of averages there should be. If you stick to your diet there is no reason at all, why you shouldn’t perform at the top level.

One point is that coeliac disease often kicks in around twenty, so could it be the explanation why some youngsters of great promise don’t progress.

Detection, Surgery and Drugs

 

There are three main ways of fighting disease; detection, surgery and drugs.

Are we in danger of spending so much on new and very expensive drugs, that the budgets for detection and surgery are being eroded? After all in some diseases like cancer, the drugs are secondary to very early detection and good surgery.

I myself am a coeliac, like 1 in 100 of the population. Very little is being done to detect this disease, despite the fact that if it is not detected it can lead to various cancers and other problems.

But the problem with coeliac disease is that it is cured not by drugs but by a gluten-free diet, so there’s nothing in it for the drug companies.

Motherhood and Alcohol

 

I used to work in a pub with a barmaid called Pat.

She had her baby just after the war and every night her husband sneaked a bottle of Guinness in for her to drink. Hers was the only baby that sleep through the night. I met him when he was thirty and he was a well rounded individual, who drank very sensibly.

On a more serious side, I moderate a list for coeliacs. We have had I think three women get pregnant soon after going on a gluten-free diet. Is this because you’re getting all those healthy folates again and this helps conception?

Coeliac Ignorance

 

We had a bad day yesterday in that my wife, Celia, went to hospital with a bad pain in her shoulder. It was so severe that she had to miss Court for the first time through illness in all her thirty or so years at the Bar.

Anyway they found her irregular heartbeat, which was described as a medical curiosity by a cardiac consultant in Liverpool, when she had our first childe nearly forty years ago. We spent the whole day in the hospital, whilst they did tests and in the end proved that she is fit and well. But they didn’t do anything for the shoulder.

The point is that the doctor, who saw Celia was on crutches and had serious arthritis. She asked if Celia was on a diet and she said because I was a coeliac, she was on a virtually gluten-free one. I then said have you tried that for your condition. She had no idea that it might help and when I told her that a consultant at Bury St. Edmunds recommended it to his patients, she was very surprised.

How much training do doctors have in the interrelationships between diseases?

Prozac Nation

 

With the news today about the large number of people on anti-depressants and the reported links between coeliac disease and depression, I wonder if anybody has any thoughts.

Eating on the Hoof

 

Try going to any attraction and being a coeliac like me.

It is no problem in a city centre as many chains now accept my dietary requirements. But any sporting venue, such as a football ground or a racecourse is a complete no no for me.

Everything like a low class frankfurter, burger or chips is definitely out.

Medical records

 

I saw an article on BBC Breakfast about the computerisation of medical records.

Personally, I've no problem with this as my medical records don't contain any dark secrets. I've read most of them by the way, as the nurse and I usually browse through the older ones to look at all the coeliac symptoms that are there, when I have my B12 injections. (Does your nurse sit with you for five minutes or so, to check for any injection shock?) Unfortunately, they start when I was 21 as they got lost after University. (I suspect that I may have two NHS numbers, which is a problem for computerisation as well.)

But the first entry is persistent and severe diarrhoea, which won't go away. Guess what we had a lovely bakery in the village.

If they show anything, they show that doctors kept missing the symptoms of CD for thirty years and even then it took another five for a correct diagnosis. If I look at those doctors, none were incompetent and one was a personal friend. So perhaps it says something about the problems of diagnosis of CD.

But what if I have something to hide.

Say abortion of which there are upwards of 50,000 a year in the UK or a sexually transmitted disease. Would you want those to be on a computer system? On the other hand if you didn't, then would you really want to give that as the reason for not being entered.

I know this is off topic, but what does everyone think.

Additives in Medicines

 

I am a coeliac and can't eat the gluten found in wheat, barley and rye.

I have a real problem with things like cough mixtures which are not gluten-free as some contain syrups defined from wheat. Gluten is something that should be banned from all medicines.

Nailbiting

 

I bit my nails for over fifty years. Then I was diagnosed as a coeliac. I have now stopped, since I've been on a gluten free diet.

Elveden Estate

 

Yesterday we were on the A11 at Elveden, which if you know the area, is the only piece of single carriageway road between Newmarket and Norwich.

We went into the Deli/Cafe at the Elveden Estate, which is probably the most luxurious farm shop, we've ever seen. There were lots of very interesting products, many of which were gluten free and probably unheard off outside of Suffolk or Norfolk. It was definitely worth a browse. We bought some Suffolk salami and a Suffolk dressing for salad.

We also had a coffee in the cafe and they said to mention if you had any allergies. Obviously, this didn't apply to the coffee, but I asked and they said they were very much aware of all the problems and would be happy to provide an appropriate meal.

They also have all sorts of other things to do.

Anita Roddick Comes Out

 

Anita Roddick has just announced that she is suffering from hepatitus C.

That was a brave decision to take, but one that is to be welcomed by all.

I just wish that someone would do the same for coeliacs.

Boots and Medicines

 

I've been trying to get rid of a cough/cold for the last week or so.

Yesterday, I went into Boots in Newmarket and asked if they had a list of GF cough mixtures. They didn't. I also asked a pharmacist friend and she didn't know of a list.

So a nasty letter is going off to Boots today.

Strepsils

 

I've got a monumental sore throat and Celia has bought me some Strepsils.

I phoned them up to see if they were gluten-free as they contain a lot of glucose, which might have been derived from wheat. Their phone help line is only Monday to Thursday and then it stops at 4:30. Fat lot of good that is.

The web site never mentions gluten or coeliac.

The Times Report on Coeliac Disease

 

We get The Times delivered, so I'll keep a copy of their report on coeliac disease. It looks comprehensive and bangs on about one in a hundred being coeliacs. There seem to be lots of stories including one about coeliacs not getting pregnant.

I should make people think if nothing else.

Simon Mayo

 

I put a question into Simon Mayo's program on Radio 5 Live, because the lady who runs the Food Standard's Agency was on. The question was about gluten levels.

I think it may have been answered because at the wrong moment someone phoned.

So if anybody heard it can they tell me what was said.

All Party Coeliac Disease Group

 

This All Party Group is chaired by Kevan Jones.