Adrian Gray

NASS Conference 2009: Starch Heretic

2009-11-22T17:27:00.000Z

It was great to meet up with many other AS sufferers on Saturday at the NASS 2009 AGM and Conference at the University of Reading..

It was especially good to meet up again with Professor Ebringer from KCL - the man who had told me about the starch-free diet and set me on the path of freedom from AS symptoms.

To some it may be heresy to speak of a diet that cures a medical condition - or at least puts it into full remission - but if that is the truth, as it is, how can I express it any other way?

Starch-Free for Life!

2009-11-20T21:51:00.006Z

Whilst visiting the 2006 NASS (National Ankylosing Spondylitis Association) Symposium at the
University of The West of England, I spoke to a Dr. Alan Ebringer from the Department of Rheumatology at Middlesex Hospital in London.

What Dr. Ebringer told me was almost unbelievable yet, if true, would be worth trying. He told me that people with Ankylosing Spondylitis (AS), in general, have a high number of Klebsiella bacteria in their stomachs. These bacteria have 'antigens' which react with 'self-antigens' such as the HLA-B27 (presentin most AS sufferers) and spinal collagens. It is this reaction which causes the inflammation, the pain and the deposit of bone growth which makes up AS. This is an interesting thing to know, however the stunning thing was what he said next. He told me that Klebsiella is fed by starch present within the stomach. By refraining from eating starch in my diet I could reduce the number of Klebsiella bacteria in my stomach and thus reduce the inflammation, stiffening and pain!

A couple of weeks after the Symposium I decided to start a (completely) starch-free diet and I felt the difference in just a couple of days.

Now I am over 2 years into my starch-free diet. I am still completely pain-free and still able to do my NASS group exercises more freely than ever before. I am on no medication for AS, yet I have never felt better. I felt I had nothing to lose by trying the diet, and plenty to gain if it worked. Why don't you give it a try too?

I believe that this diet may well be applicable to related conditions such as Crohn's disease and Irritable Bowel Syndrome (IBS) since the same disease mechanism seems to apply. Bacterial infection is now believed to trigger Chrohn's disease and has certainly triggered more than a few cases of AS. As with me, you may find that it gives you the cure that you never got from your medication. Isn't it worth a try?
I am basically following the London “AS Low Starch Diet” ( www.kickas.org/londondiet.shtml ) which is almost identical to “The IBS Low-starch Diet” by Carol Sinclair ( ISBN 0091912865 – 2nd edition revised in 2006 with many recipes).

The starch-free diet is simple enough for us, as we cook a lot of our own food.
For us, the diet is quite easy, not too restrictive at all for main courses, but a little more for puddings.

However, for people who buy a lot of their food ready-made, it would be less simple and more restrictive.

A typical day's diet would be:
Breakfast - Yoghurt with fruit/raisins in it & tea.
Lunch – A bread alternative (which is really an omelette - eaten cold - made with almonds, see below)
with anything I would have on bread - cheese, egg, fish, honey, jam, etc. Also carrot/salad, nuts, dried fruit, chocolate, fresh fruit, home-made starch-free cake/biscuits.
Tea - A home-made meat or fish dish with plenty of various vegetables. I could have the potato
alternative (which is the same as the bread alternative, but warmed up a bit) but I actually prefer just extra vegetables.
Pudding - usually home-made - various – for example starch-free icecream, meringue, mousse, biscuits or cake. (Some shop bought puddings are OK).
Starch is found in cereal grains (wheat, oats, rye, barley and rice) so is in such things as bread, biscuits, cakes, pasta, rice, potato, breakfast cereal, flour, cornflour, crisps - so don't eat anything with these things in them.
You can also find that starch has been added to products you wouldn't expect, for example I have seen
- a packet of non-organic raisins which had wheat (syrup) added to it
- some types of yoghurt have tapioca starch added whereas other types have no starch added
- baking powder often has starch added. (You can make your own starch-free alternative though).
So be careful and check the ingredient's list for products that you buy.
Basically, you just need to replace the starch you would normally eat with increased amounts of other food e.g. meat, fish, milk products, eggs, vegetables and fruits which are generally all low in starch and are therefore the things to eat.
There are some food items that are surprisingly starchy and thus best avoided (*):
Fruit - rhubarb & bananas
Veg - cauliflower, corn, parsnip
Beans (e.g. baked beans, kidney beans)
Lentils
Nuts & Seeds - walnut skins, peanuts, cashew nuts, chestnuts, sunflower
(*not necessarily a complete list. This is in our experience)
Other - although sugar is OK to eat and use you must avoid heating it too much, since “caramelisation” produces a type of starch. The same goes for onions - they are fine, unless they are cooked to the 'caramelisation' point when they would be full of starch.

In addition, some cheese rind contains starch, and almost anything thickened is likely to contain starch.

For example, Yeo Valley fruit yoghurt and Greek Yoghurt contain tapioca starch whilst the equivalent Rachel's Organic yoghurt does not. Some ice-cream contains starch, some don't. Some chocolate has starch, other chocolate has no starch.

You just have to look at the ingredients list carefully.
Most processed foods contain some form of starch – and the EU does not require starch to be marked – so be warned! Modified starches can be listed in ingredients via their “E” numbers. The following are “E” numbers to avoid: E1400 to E1404, E1410 to E1414, E1420 to E1423, E1430 and E1440 to E1442. I drink cider (which has no starch) instead of beer which I am not entirely happy with as I have had one or two tummy upsets when I have drunk it (although I don't believe it to be starch necessarily). Wine is fine.

We use the starch-free book above for biscuit, cake and pudding recipes that are starch-free. It is also

possible to experiment with 'normal' recipes, just using ground almonds instead of flour.
It's not much effort, it just takes a bit of getting organised, not running out of things, etc.

We keep a good stock of our starch-free bought items to ensure we do not run out of them
It really is not too inconvenient or difficult - and really so well worth doing, and so well worth the little sacrifice it is to stop eating certain foods.
What we Eat
Any (*) meat,
Soup (home-made)
Any veg (*) – apart from cauliflower, corn, parsnip
Any fruit (*) – apart from rhubarb & bananas
Dried fruit
Brazil nuts, macadamia nuts, almonds
Yoghurt, Cheese, Cream, Milk
Chocolate, home-made starch-free puddings, cakes, biscuits, sweets, etc.
(* not necessarily quite correct. This is in our experience)
Note – check all processed food for added starch – see above

Bread Pancakes
Ingredients: 2 eggs, a pinch of salt, 7 tablespoons home-ground almonds, oil
Method: Beat eggs (by hand), add salt, beat in almonds. Heat up some oil in a frying pan or skillet.
Pour some egg mixture into it, and spread it out to be as thin as possible, with a fish slice. It should look a bit like a normal but thicker
pancake frying. Cook for 1-2 minutes each side, be careful not to burn it.
Keep in the fridge.

Any enquiries, please get in contact with us and we will be very pleased to advise or clarify further.

E-mail: diet@ankylosingspondylitis.org.uk
Web: www.ankylosingspondylitis.org.uk
Leaflet: Starch_Free_Diet.pdf

How potatoes and pasta can damage the bones - THE INDEPENDENT - Tuesday 8 November 1988 Page15 Health

2009-11-20T21:38:00.005Z

How potatoes and pasta can damage the bones

Liz Linehan reports on a controversial approach to a crippling disease of the joints

MORE than a million people in Britain are suffering from severe diseases caused by the body attacking itself. One of

the commonest is caused by eating too much bread, potatoes and pasta. Excessive carbohydrate encourages abnormal

growth of bacteria in the bowel triggering the crippling disease. People who are vulnerable have inherited a special

tissue type. They produce antibodies which erode bone and joints causing ankylosing spondylitis, illustrated below.

Now a team of doctors and scientists in London had discovered that avoiding carbohydrates can lead to remission.

Clues suggest that other diseases such as rheumatoid arthritis are caused in a similar way. Most people with rheumatoid

arthritis belong to another common tissue type and are sensitive to a bacterium, Proteus, which commonly causes bladder infections. The prospect of preventing the disease and perhaps of reversing it in the early stages is now at hand.

This is just the beginning; motor neurone disease, pernicious anaemia, myasthenia gravis and certain forms of diabetes may also be triggered by infections. Eventually it may be possible to halt these diseases too.

NINE years ago, Janet Djelal began to "hurt" all over. She was then 30 years old, a mother of two, living in north London. "Everything seemed to be hurting. I had pain in my back, down the back of my legs, and I couldn't move certain joints properly. I had recurrent attacks of conjunctivitis and cystitis. I looked awful and felt awful all the time and no one could tell me why."

Her physical symptoms were accompanied by depression, and a lack of energy and motivation — "I didn't want to go anywhere or do anything."

Janet's symptoms were labelled "psychological" but her health failed to improve and one night she experienced severe chest pain and breathing problems. A doctor was called out and he said she was having an asthma attack, something she had never before suffered from. By now, anxious and frightened, she turned for help elsewhere. After a private examination and various tests, she was referred to hospital. The doctors discussed her symptoms at length. "Suddenly somebody seemed" to know what I was talking about. The relief was tremendous."

Ankylosing spondylitis (AS) was diagnosed, a chronic arthritic disease which initially affects the spine, but which can involve other joints and tissues including the lungs, heart and eyes. It is characterised by periods of inflammation and pain, and remissions of weeks, months, even years Its progress in each patient varies greatly, as do the symptoms.

To relieve the pain and reduce inflammation, Janet was initially prescribed non-steroidal anti-in-flammatory drugs, the conventional treatment for management of the disease. Less conventional is the low-starch diet she now follows as one of a number of patients being treated by Dr Alan Ebringer, who is in charge of AS research in the department of rheumatology at the Middlesex Hospital, and an immunologist at King's College. London.

Dr Ebringer believes that the disease is a form of reactive arthritis caused by bacterial infection in the colon or rectum. By diet alone, or in conjunction with drug therapy, the extent of the infection and disease can be controlled. He has now treated more than 200 patients in his clinic at the Middlesex and claims success in halting the progress of AS in the majority.

There are more than 80,000 people in the UK being treated for AS, but according to the National Ankylosing Spondylitis Society (NASS). around 750,000 people are sufferers. "Many dismiss their symptoms as 'just a bit of back pain' or a 'touch of arthritis'," says NASS director and AS sufferer Fergus Rogers. "They remain ignorant of the true cause of their symptoms. Long periods of misdiagnosis or — as in Janet's case — no diagnosis at all, are the norm, as many GPs confuse the AS with other back problems."

The onset of AS is most common in the 15-30 age group and affects three times more men than women. Most of them first visit their doctor complaining of lower back pain and "early morning stiffness". The disease usually starts in the sacroiliac joint, between the sacral bone at the base of the spine and the pelvis. Inflammation develops and there is "wearing" down of the bone. Once the inflammation subsides, though, there is a reactive bone growth which can cause fusion between previously mobile joints.

If it progresses to the vertebrae — spondylos is the Greek for vertebra — this fusion can result in "bamboo spine", when it becomes fixed and rigid. In severe cases there is a complete loss of posture and the typical Victorian representation of the AS sufferer is that of a shuffling hook-backed figure, bent almost double.

The hip, knee and ankle joints may be affected, leading to more pain and loss of mobility. Chest and neck pain are common if the vertebrae corresponding to these areas become affected. Often the initial stages of the disease are the worst, when depression, fatigue and weight loss can accompany debilitating pain. Although drug therapy, physiotherapy and daily exercises can keep the worst deformities can be kept at bay, life as a "spondy" is not easy.

But where exactly does the diet fit in and how can it help? Dr Ebringer and co-workers in the departments of biochemistry and microbiology at King's College, London, have identified a bacterium in the bowel called Klebsiella which triggers the disease.

"Klebsiella thrives on a diet rich in starch," says Dr Ebringer. "If you cut out starchy carbohydrates such as rice, potatoes and flour products, then you reduce the number of Klebsiella in the gut, and subsequently the production of antibodies to the bacteria which cause the inflammation. Klebsiella levels can also be controlled by the drug salazopyrine which has anti-inflammatory activity".

Patients going to Dr Ebringer's clinic are given instructions for a low-starch diet. Dr Ebringer admits the diet is only a rough guide. It was drawn up on the assumption that starch in most people's diet comes from bread, flour products and potatoes. These foods should be avoided if possible. Pasta, rice and other starchy products should also be avoided. (Meat, fish milk, cheese, eggs, fruit and vegetables may all be eaten without restriction.)

Dr Ebringer's theory as to the cause of AS and his treatment are controversial and he has many critics among medical colleagues. Dr Frank Dudley Hart, former head of rheumatology at the Westminster Hospital, and now a consulting physician there, says (theories as to the cause of AS abound and there are indications of a link with the gut. "But there is still not enough evidence to sup-port these theories conclusively."

Janet Djelal, who has followed the diet for three years now, has little need of more evidence. " When I first started I couldn't see any difference, but I realise now that I wasn't following it closely enough. Once I stuck to it religiously I noted real improvement after six months or so. Movement became easier and the lethargy and depression lifted. The best way I can describe it is that after years of pain and stiffness, I suddenly feel 'well-oiled'."

National Ankylosing Spondylitis Society advises sufferers, 6 Grosvenor Crescent, London SW1X 7ER.

PETER COWLING held a dish up to the light and saw a faint white line. It marked the place where serum fixed in agar gel had reacted with an extract of bacteria from the human bowel. Cowling, a third-year student at King's College, London, examined the line with excitement. This was the result he hoped for but did not dare to expect.

The faint white line provided the missing clue to the cause of two diseases which between them affect more than a million people in Britain, These diseases, rheumatoid arthritis and ankylosing spondylitis (AS), another painful disease of the joints, start when the body reacts to bacteria in the bowel or some other part of the body, triggering a process of self-destruction.

The test on the laboratory dish demonstrated a similarity between human tissue and the bowel bacterium, Klebsiella. It showed that the body's immune system could mistake human tissue for the bacterium, and so in trying to get rid of the infection the body attacks itself. The similarity of body tissue to the bacterium was predicted by the immunologist Dr Alan Ebringer, but had not previously been observed. The basic idea was simple, but the Implications of it were immense.

"Peter Cowling, was asked by Dr Ebringer to screen our departmental collection of bacteria to see if any of the bacteria had a similarity to the human tissue type B27," recalls Professor Pitt, Emeritus Professor of Microbiology at King's College. "Just one type of bacteria was found to cross-react with the test-serum, out of 40 or so types of organisms screened — that was the exciting and significant thing."

It had been known for some time that 98 per cent of people suffering from ankylosing spondylitis have the B27 tissue type. Dr Ebringer began his experiments because he believed that there must be an organism, which could have been a virus, which triggered the disease.

The experiment showed that ail the organisms which reacted with B27 were bowel bacteria: Salmonella, Klebsiella, Shigella, and Yersinia. The last two types of bacteria cause diarrhoeah diseases and it has been known for a long time that people who suffer a severe infection of these sometimes develop arthritis afterwards. But Klebsiella, which is a normal resident of the bowel, had not been linked with arthritis.

Once Dr Ebringer knew what to look for it was a simple matter to test for Klebsiella in the faeces of patients with AS. The tests showed that patients with active disease had more Klebsiella in their stools than normal people, and more than patients whose disease was inactive. During active phases of the disease the patients could also be shown to have antibodies to Klebsiella in their blood. These studies showed that healthy males had more Klebsiella in their bowel than healthy females. This seems to explain why AS is almost three times as prevalent in men than women.

These experiments, and others, suggested that AS is an auto-immune disease. The immune system, which normally protects the body from infection, is precipitated into attacking tissues of its own body with devastating effect. In people with AS, Dr Ebringer believes this destructive process is triggered by a reaction to bowel bacteria.

A bacterium could be involved in rheumatoid arthritis in the same way

There are a number of other chronic degenerative diseases that doctors know, or suspect, of being auto-immune in origin. Motor neurone disease is such a condition, so is systemic lupus erythematosus, rheumatoid arthritis, myasthenia gravis, pernicious anaemia and certain forms of diabetes. In most cases it is not known if there is any factor like bowel bacteria which triggers the destructive reaction.

However, Dr Ebringer and his co-workers have discovered that another bacterium could be involved in rheumatoid arthritis in the same way that Klebsiella is in AS. A high proportion of people who suffer from rheumatoid arthritis have the HLA-DR4 tissue.

Money was short and so the task of identifying that bacterium was given to another King's microbiology undergraduate, Yvonne Macafee. She screened the departmental collection for a bacterium that would react with serum which had been prepared to react against human white blood cells of the HLA-DR4 tissue type. Again only one microbe was found to react. This time the culprit was found to be Proteus, a bacterium that causes urinary tract infections.

Following up this observation, Dr Ebringer found that patients with active rheumatoid arthritis had much higher levels of anti-bodies to Proteus in their blood than healthy people. Trials with patients at the Royal Hampshire Hospital in Winchester have further supported these observations, and a group in Dublin have also reported raised antibody levels to Proteus in rheumatoid arthritis patients.

Once the Proteus/rheumatoid link was established, it could be used to explain other features of the disease. Two-thirds of sufferers are women, almost certainly because they are anatomically more vulnerable to urinary tract infections. Some men have been found to develop the disease after respiratory tract infections — could it be that the infecting organism is Proteus, asks Professor Pirt.

Dr Ebringer's work has met with much opposition and his efforts to gain acceptance for these challenging theories are a classic tale of one man taking on the "establishment". It is a confrontation that has been watched with Interest and no little detachment by Professor Pirt. Now Dr Ebringer's early work is supported by studies from several centres in other countries. The most recent from Finland.

The work, which was mainly carried out by PhD students over the last 12 years, is now gaining acceptance and acknowledgement from the profession as an exciting discovery. AS is an area that is crying out for further investigation

associated with HLA-B27 - Reiter's syndrome (a type of arthritis with urethritis and eye inflammation), uveitis (an inflammatory eye conditio!.} and reactive arthritis which occurs following infection elsewhere in the body. It seems likely that the dreaded Klebsiella or similar bacteria may be responsible for these conditions too.

Liz Lachan

A 'bamboo spine' built of bony bridges

PEOPLE with ankylosing spondylitis suffer increasing stiffness and pain in the spine and buttocks. The man illustrated above has suffered from the disease for many years and his spine has become fused in the bent position so that he can only see ahead with great difficulty. In the most extreme cases people with the disease may need the help of prismatic spectacles to see ahead with any comfort The detail of vertebrae (illustrated) shows how bridges form between the bones until they eventually fuse to make a '"bamboo spine". Bones in the pelvis may also fuse causing pain and difficulty in sitting still. Erosions often occur in the heel and other joints too.

I'm Not A Darts Player!

2008-12-23T16:12:00.003Z

I just saw my namesake playing darts on TV today.

He's much more wealthy, famous, younger and has more hair than me.

Why should I be jealous?

Eulogy for Peter Lawrence Gray 25th October 1934 – January 25th 2008

2008-09-12T16:09:00.002+01:00

Work hard and play hard, but do it with a smile – that could have been his motto.

We’ll all remember Peter Gray – my Dad – and because of that he’ll live on.

They say that every man dies twice. Once when his body dies, and again when he’s finally forgotten.

We’ll all have our memories of the man who drank his tea straight from the kettle, the man who won the Mallett Cup in Silver Jubilee Year, 1977 or maybe the man who drove the school bus with his kiddy paintings in it.

Maybe even the boy who caught wartime rabbits along Culver Cliff, or the naval rating who winked at the ship’s Captain who had a nervous tick and ended up scrubbing toilets.

Many will remember him as a successful Agricultural Merchant in the heyday of Island Farming pre-Milk Quotas. He certainly knew when to call it a day on that career.

I’m grateful he forgave me putting his boat on the rocks at Gurnard Ledge and for pranging his 4wd Patrol and van a bit. He showed me great patience when teaching me to drive.

We’ll all have our own memories of a friendly man, a hard worker, a good sportsman, my Dad - who could never sit down and rest.

Now he’s resting evermore, his toil here is done.

We’ll keep on to our fond memories of Peter Gray, my Dad.

[And the bit I forgot - He loved his dogs, Joy, Tara and Toyah, and the dogs loved him. And those that remember him miss him still]