New diet spells end to life of suffering

By REBECCA WALSH

Carol Sinclair still has the nightmare. It's not the usual sort: her nightmare is about bread.

"I'm making sandwiches and I absent-mindedly put a crust in my mouth. In the dream I think, 'Oh my god, I've eaten a crust', I've eaten a crust, and I'm waiting for the pains to begin, waiting and waiting.

"And they don't begin, of course, because it's only a dream and I wake up and think, 'Oh, it was just a dream, thank goodness'."

Sinclair hasn't eaten bread for more than 20 years.

It was one of the first things she ditched from her diet as she struggled to overcome the gut pains that left her bloated and in agony night after night. Sometimes the pain was so bad she could only crawl up the stairs to bed.

Soon after, rice, potatoes and pasta disappeared from the menu, as did cakes and most cooked vegetables. Now, at 66, Sinclair has never felt better.

After years of pain, doctor's visits, time in hospital and self-help remedies she stumbled across something that would change her life forever. By removing starch from her diet, the irritable bowel syndrome that had consumed her since childhood was virtually gone.

New Zealand-born Sinclair is among the 15 per cent of people who will suffer from irritable bowel syndrome at some time in their lives.

The term simply means what it sounds like - a person's bowel becomes irritated or upset, causing bloating, discomfort and pain. Many sufferers experience constipation or diarrhoea, some have nausea or loss of appetite. Two-thirds of sufferers are women.

Sinclair, a slim, delicate-looking woman with bobbed blonde hair, can trace the first tummy pain and discomfort back to childhood, before she started school.

It wasn't appallingly bad, "just enough to whinge about". But her mother wasn't terribly sympathetic about whingeing, and doctors told her she had a low pain threshold so she just got on with it - and the pain got worse.

As a teenager "out with boys at parties", she often felt like escaping home to lie down.

She can't remember the number of meetings, while working as a copywriter in ad agencies, where she tried to blank the pain from her mind. "It got to the stage where every night it would be so bad, lying in bed with waves of pain like labour pain."

For years Sinclair went from doctor to doctor. She tried self-hypnosis, naturopaths and gastroenterologists. At one point she nearly had part of her bowel removed.

There were also mysterious joint pains. Sometimes the back and shoulder pain was so bad she had difficulty getting dressed.

Constipation was a problem and soon she was popping up to 35 laxatives a night.

"The more you take the more you need. I felt dreadful. I felt like death warmed up." In desperation, Sinclair asked a doctor for a referral to a nutritionist and was told she should just go home and relax. She was, the doctor said, emotionally uptight. "I was so angry, I had been told that for years."

At the same time, the explanation simply didn't make sense. Sinclair was happier than she had been in years after marrying artist Raymond Ching.

The couple, both previously married, had been introduced by a mutual friend. Sinclair had thought Ching was a "wonderful Chinese" artist. She soon found out that Ching was a Cornish name and that his family had emigrated from Britain in the 1800s.

The pair kept in touch and in 1979 Sinclair moved to England to be with Ching. They now live in the English town of Bradford on Avon, near Bath. Sinclair describes herself as a "kept woman" and Ching as a "darling person who is quite mad". He collects comics and she collects medical models of human body parts.

Still, the kept woman has not been idle. She has published a biography of her husband and a "scary" children's book about an undercover organisation monitoring trade in endangered species and is now working on a biography of the Victorian sexologist Havelock Ellis - "a strange man who inadvertently married a lesbian".

The other thing that jarred with Sinclair was the fact that her pain was not triggered by stress. In fact, it had disappeared after her first marriage broke down and she stopped eating. On every level she could not accept the doctor's verdict that it was all in her mind.

"That night I went home in tears. I was so angry and at the point I decided I was going to take matters into my own hands." A week later she saw a TV documentary about people suffering from the syndrome giving up wheat flour. She stopped eating bread. "It was fantastic. For the first time I could remember, I started to feel well."

But 18 months later the symptoms were back, so she gave up potatoes, rice and pasta. This time the reprieve lasted two years. By then she had discovered that many vegetables released starch when they were cooked; even peas and beans were a problem.

She also found that many processed foods contained modified starch as do some medicines to bind ingredients. And her body reacted - badly.

The big question was how to identify starch in a food before she ate it, when it wasn't listed as an ingredient. A pharmacist suggested a simple iodine test: a drop of iodine on a starchy food changes colour from orange to inky-blue to black.

"I immediately bought some iodine and an eye dropper and had great fun testing all sorts of things. I tested food cooked and raw.

"I had all these little jars and bowls in my kitchen - it was like a laboratory. I did this for a long time and then thought, 'I'm going to write a book about this because now I know I can tell people how to test for starch it makes it so much easier'."

So she did.

In the early 1990s The Sinclair Diet System was published, sold well and was then updated as The IBS Starch-Free Diet.

While Sinclair had found a way to eliminate the symptoms of the syndrome, it wasn't until 1999 that she discovered the science behind how the diet worked. That year her book was found on the internet by Texan George McCaffery, who had a debilitating form of arthritis called ankylosing spondylitis, which involves the spine and large joints.

An auto-immune disease, it is triggered by a microbe called klebsiella, which live in the gut, feeding on undigested starch. One of the symptoms includes irritable bowel syndrome.

The Texan was being treated by Alan Ebringer, a professor of immunology at King's College in London. Part of his treatment was a low-starch diet. McCaffery's story got Sinclair thinking that maybe she had been suffering from ankylosing spondylitis all along.

Years before, she had suffered terrible back pain, especially in the mornings. Despite cortisone injections, the pains in her shoulders, elbows and arms prevented her even lifting a pot from the cupboard - and they disappeared about the time she eliminated starch from her diet.

After consulting Professor Ebringer a blood test proved Sinclair did indeed carry the HLA-B27 gene - a key to diagnosing ankylosing spondylitis.

About 8 per cent of the population carry the gene but not all go on to develop ankylosing spondylitis.

Professor Ebringer says the fact foods such as potatoes and wheat are cheap means they have become a huge component of our diet, but our bodies are not geared to break down starch quickly.

He has worked with about 500 people who have tried the low-starch diet - "the hunter-gatherer diet of our ancestors of a few thousand years ago" - and most have improved.

But he says many doctors are unaware of the significant role diet can play.

For Sinclair, the revelation that she had been treating a condition she didn't know she had prompted her to publish her most recent book.

The IBS Low-Starch Diet follows her story and includes information on conditions such as Crohn's and coeliac disease. It also contains an extensive collection of recipes, proving that despite her slight appearance, the grandmother of three still indulges in cakes and biscuits by replacing flour with ground almonds.

Sinclair regularly starts the day with bacon, eggs and maple syrup. Lunch and dinner are usually meat and salad, although she can eat some cooked vegetables, including asparagus, spinach, tomatoes, mushrooms and fennel.

If it all sounds remarkably similar to the Atkins diet - much loved by American film stars - it is. But unlike Atkins, Sinclair's diet targets starch rather than carbohydrate - and while all starches are carbohydrates, not all carbohydrates (including honey and grapes) are starch.

Sinclair's theory is gaining ground with those in the medical profession. Auckland Hospital gastroenterologist associate professor Alan Fraser says excluding foods from the diet is "top of the list" when it comes to managing irritable bowel syndrome.

But he believes doctors do not have the training or time to work through the process properly with their patients.

"You don't hear people within my specialty talking diets to a great extent. We tend to make the diagnosis, make sure it's nothing else and don't go much further."

Professor Fraser says there is no reason a person with irritable bowel syndrome should not try a starch-free diet but he warns that what offers a radical improvement for one might not for another. "Different people find different solutions."

For Sinclair the long road to the low-starch diet was forged out of a desperate determination.

She doesn't feel bitter towards the doctors who told her to relax; rather, she believes the average GP has "a very tough time" coping with mountains of information. Still, she feels an obligation to let others know what works for her, in the hope it might make the difference for them.

And no, she doesn't think she is missing out. She can still drink coffee, tea and alcohol. She can also eat chocolate. "All I am giving up is pain - and I am so relieved."

Carol Sinclair's IBS Low-Starch Diet