A.S. Face 1067: Carolyn Ching (Carol Sinclair)

Face 1067

HOW I DISCOVERED I HAD AS.

I suffered from so many symptoms as a child and teenager, that I just stopped talking about them because my mother and doctors said I was a hypochondriac. I just ended up feeling like a wimp.  When I woke up with a sore, stiff neck and backache, my mother said I’d slept in a draft.  I believed my mother, and we did live in a draughty house, but when I got older I began doing the round of doctors. I took Aspirin and had cortisone injections for my shoulder, elbow pains, but I never could find out what was causing my painful symptoms of gut pain and bloating.  I was always told it was all in the mind. For over 20 years I tried every diet and wacky idea, endless herbal remedies and alternative medical ‘cures’ but nothing worked. Then at last, my gut pain symptoms were given a name – Irritable Bowel Syndrome.  Even this was a breakthrough, but it was still no cure because the doctor told me it was due to stress and I should just go away and try to relax. But this was the first time I had heard the name, IBS.

Walking home from the doctor’s, deeply resentful at being told once again that my pain was due to stress – rather than my stress being due to pain – I furiously decided I would find out myself, what was causing the pain.  To hell with doctors!   When I got home, an amazing thing happened.  I switched on TV in time to see the latter part of a documentary on Addenbrook’s Hospital, Cambridge, England.  Dr. John Hunter was talking about this thing I’d just been diagnosed with – IBS.  He said their research was pointing to the fact that it might be caused by the consumption of wheat, and putting patients on a wheat-free diet was proving very successful.

That night I gave up all bread, pastry, pasta, cakes – didn’t eat anything made from wheat.  The next day I experienced an amazing remission of symptoms. As opposed to my usual experience of having so much pain and bloating that I could hardly get up the stairs to bed – I experienced for the first time in years, the blissful feeling of no gut pain.  I was euphoric, but I didn’t think it would last.  By the end of the following day I had been pain-free for a whole day.  The idea of giving up all those breads and cakes and pastries we love so much wasn’t appealing – I kind-of hoped it wouldn’t continue to work, but it did, and I have never knowingly eaten wheat products, since.

For about a year I stuck to the wheat-free diet, but then the symptoms began to creep back. I was devastated, but still convinced that my symptoms were due to diet, so I began to think about all the other foods I was eating and what they had in common with wheat.  I concluded it had to be starch, and began to give up all other starchy foods, starting with potatoes, moving on to rice, and other root vegetables.  The symptoms disappeared again.  I then began several years of research, reading medical books on gastroenterology, digestion and chemistry – and when I realised I could test food with iodine to see if it contained starch, I decided to write a book on the diet.

HOW I DISCOVERED MY REAL PROBLEM WAS AS By this time, IBS was beginning to be talked about as a condition of epic proportions.  One in three of the population in most western countries suffer some of the symptoms.  The book was first published in 1995 under the title, The Sinclair Diet System, and eventually re-published in several different editions as the IBS Starch-Free Diet.  In 1999 I was contacted by a group of patients of an immunologist, Professor Alan Ebringer, who told me they had an arthritic disease called Ankylosing Spondylitis (AS) and been put on a low-starch diet by Professor Ebringer (Hon. Consultant in Rheumatology, UCL School of Medicine, London for his discoveries in the field of rheumatology, and Consultant on Autoimmune Diseases to the NIH in Washington, among other honours).

Ebringer had made a significant discovery in the treatment of this disease, with its many and varied symptoms: the symptoms disappeared on a low-starch diet.  His patients said that my book was the only book in the world, as far as they could discover, that gave any information about starch, how to manage a low-starch diet, test for it in your food, and included recipes. I was amazed to hear that anyone in the medical world – let alone a Professor – was putting his patients on a low starch diet.

HOW IS ANKYLOSING SPONDYLITIS CONNECTED WITH IBS? Ebringer got in touch to tell me that my book was an excellent aid and that he would be recommending it to all his patients.  I asked him to tell me what the symptoms of this weird-sounding disease were, and when he explained, beginning with the most well-known: chronic back pain; the prognosis being eventual curvature of the spine and arthritic crippling, often leading to life in a wheel-chair, I realised I’d had them all – but they’d faded away on the diet.

I had always suffered from a stiff neck, back pain, shoulder pain, elbow, feet, jaw pain, but had controlled the worst of these with Aspirin. When I was unable to dress myself properly – couldn’t do up my bra or put my arms into a coat – I was told it was repetitive strain injury from using a typewriter – the treatment was physiotherapy (useless) followed by a course of cortisone injections in my shoulders, which did work for a while.

Professor Ebringer explained that the autoimmune background of the disease was the HLA-B27 gene, which, to the body’s immune system, resembles the Klebsiella pneumoniae bacteria, living in undigested starch in the gut.  When the immune system tries to attack the Klebsiella, it turns on its own body cells and begins to destroy them (molecular mimicry).  This produces inflammation throughout the body which ultimately causes crippling and/or fusion of the joints.  But for many agonizing years prior to this, symptoms of chronic pain and inflammation progress throughout the body, including the gut where it causes the so-called IBS symptoms. It can also affect the eye, causing loss of sight.  Ebringer’s simple and blindingly obvious theory, which he had put into practise with considerable success, was to starve the bacteria by reducing the amount of starch in the diet.

He told me to get my GP to arrange a blood test to see if I had the HLA-B27 gene.  I was found to be positive.  I was then referred to Ebringer, who examined my family history and did various tests.  The disease is genetic and to my surprise, I discovered that a number of members of my family have had, or have the disease, but of course, it was either misdiagnosed or never given a name until recent years.  Now several of my nephews have been diagnosed with it.  With the list of symptoms I provided, Ebringer concluded I might have been in a wheelchair had I not begun the low-starch diet many years ago.  I cannot be officially diagnosed with AS, because this is only confirmed on the basis of X-ray evidence of skeletal degeneration.  The Low-Starch Diet had prevented this happening.

Professor Ebringer asked if I would write a new book including and explaining AS.  I was eager to do this as I now could throw some light on the possible physiological cause of IBS, which was, and still is being identified as psychological: due to stress.  As you will see from my book, I thoroughly researched AS with the help of Ebringer and the books of other authorities in the rheumatology world, and my UK publishers agreed to re-publish the book.

THE DILEMMA OF THE TITLE The number of people in the western world (or eating a western diet) suffering from IBS, is very high, and increasing.  Conservative estimate is one in five of the population.  Many gastroenterologists put it at one in three and say it is now of epidemic proportions.  Naturally, my publishers, were keen to retain IBS in the title for this reason alone.  Since 1995 when my first book was published and the words Irritable Bowel Syndrome were virtually unknown, the IBS market has become huge.  Hundreds of books have been published  (I’ve read most of them and they’re mostly all rubbish).

The statistics of people suffering from AS are not nearly so high.  However, the numbers of undiagnosed sufferers is probably far greater than the medical profession recognize.  The confusing variety of symptoms makes it very difficult for people to get a definitive diagnosis.  Almost every time I get a letter from a reader who tells me their medical history, they have been suffering from both IBS and chronic arthritic symptoms for years.  Sometimes they have eventually been diagnosed with AS (usually men) but have never been asked if they have any gut pain or bloating, and sometimes they’re diagnosed with IBS (usually women) but are never asked if they have any arthritic pain.   The IBS LOW-STARCH DIET title was retained, and this has always caused confusion.  Despite this, I get hundreds of letters from people who have been searching for years for a solution to their many and varied symptoms, telling me how their life has changed since they’ve read my book and gone on the diet.

However, I think the time has now come to write a new book and direct it at other chronic diseases as well, such as diabetes and obesity, which are increasingly being associated with the excessive consumption of starchy carbohydrates.

Carolyn Ching (Carol Sinclair)

England, United Kingdom


4 Responses to “A.S. Face 1067: Carolyn Ching (Carol Sinclair)”

  1. Dear Carol,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Carolyn,

    Thank you for sharing all this interesting information and personal testimonies! I eat GF just because I read this book in the US called Wheat Belly, but it sounds like the physician you saw has proven GF diets are better for AS. I myself suffer AS and IBS, and chronic constipation. Thank you for sharing your story!

  3. Carolyn, Dr. Ebringer also responded to my questions in 2007, after searching AS in the search engine Google Scholar. He wrote so many clinical study’s, he was easy to find. Surprised that he emailed me, astonished when he sent me a two inch packet of study’s in the mail – from London !

    Similarly, I’m 53, diagnosed at 17, went through my adult life in constant pain and all the typical system wide symptoms…only when abstaining wheat from my diet, did my psoriasis disappear, my Iritis not return and vertigo left the building !

    My well being, on a cellular level, has improved 80 percent, my psychological health, 95 percent, as knowing what I’m allergic to is a great relief. Astounded that all my Dr.’s scratch their heads when I mention wheat and starch allergy…they would rather give you a pill, like putting a band aide on a gaping deep laceration. Thank you Dr. Alan Ebringer and to you Carolyn for bringing the cream to the top of the glass ! Cheers to you ! A life saving effort ! Spread these words !

  4. Carol, thanks for your book. My whole family, on my mothers side, has IBS and scoliosis/osteoporosis/arthritis. My son was diagnosed with AS years ago and has not improved on his diet of pain pills and Humira. Am hoping he’ll go on this diet, as I am, and start feeling like a human being again. I also have Candida, as does he, so we’ll have to do some refining to the diet, as all types of sugar are prohibited.
    Here’s to a much healthier New Year, 2016. God Bless. Pat Smith

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