Do any of you reading this blog have ankylosing spondylitis (AS)? The new name for this disease is spondyloarthropathy. It's a form of arthritis, an auto-immune disease, and I was diagnosed with it this year. Given my focus on health and nutrition, I was pretty shocked to find I had an auto-immune disease. Isn't my diet supposed to protect me from things like this?
I could barely get out that "I don't do drugs", and then had to start rethinking my stance. Once I got reading about inflammatory arthritis, I came to understand that when you have the fluid of inflammation sitting around your joints for long enough, eventually that liquid erodes the cartilage that protects your joints. Once the cartilage is eroded, the damage is irreversible, and also very painful. Which meant that just putting up with the pain (which I had done unknowingly for several years already), could lead to damage down the track. But the side effects of the drugs? I don't want to put anything in my body that is likely to give me stomach ulcers!
Google searches for natural treatment for AS didn't yield up anything for me, and I was wandering around in a shocked daze, wondering WTF had gone wrong, when my family urged me to do some proper medical research. My sister showed me how to search online medical journals, to see what the very latest research was for AS. I also noticed that AS was often grouped with other auto-immune diseases such as MS, and broadened my search to see what was helping auto-immune diseases in general. I started making a habit of trawling the medical journals at night once my son was in bed.
It took me two months, but eventually I found IT - the answer. I knew I had found what I was looking for, scientific proof for what causes AS and how to treat it naturally. I had a few days of feeling rather miserable as I realised that my condition was utterly permanent, but then I got into action to start the treatment. And it works!
So, here's the real deal on AS. There is a rheumatologist in the UK, a Dr Alan Ebringer, who has been researching AS for 35 years, and has published nearly sixty research papers. I have read several of his papers and can see how he slowly built up a picture that explained AS and how to treat it.
Ankylosing Spondylitis (AS) is a form of reactive arthritis that follows an infection by the bacteria klebsiella pnuemonae. The disease only occurs in people who have the HLA-B27 gene (which I do). Although 5% of AS patients do not have the gene – Ebringer thinks that the disease in these patients is actually a different entity. Klebsiella pnuemonae is remarkably similar in molecular make up to the HLA-B27 gene. Hence, when the body makes antibodies to klebsiella, the antibodies also
Klebsiella is in the digestive tracts of 40% of people, and tends to be an opportunistic bacteria that creates disease in people whose immunity is lowered. I now believe that I came down with a klebsiella infection in May 2008, at a time when my immune system was in very low state, just before I changed my diet to traditional foods. I had a very sudden onset of high fever, chills and terrible cough, which is consistent with the symptoms of community-caught klebsiella infection. I was so ill that I still clearly remember the day that I came down with it. It took me three months to recover, and despite visiting the doctor and being suspected as having whooping cough, the tests came back negative for this. I now know that commercial labs don’t have a test for klebsiella, which explains why I wasn’t diagnosed at the time. Several months later I started experiencing symptoms of AS.
If klebsiella could be eradicated from my digestive tract long term, it’s likely that my immune system would register the invader as gone, and would stop attacking the B27 genes. However, killing them with antibiotics doesn’t help, because the bacteria is so prevalent in our community that they tend to return. Sulphasalazine is a drug with (often) unpleasant side effects that is commonly used to treat AS. It kills klebsiella, which is now thought to be the reason for its (somewhat) effectiveness. However, when sulphasalazine is discontinued, symptoms tend to return within some weeks or months, likely because the klebsiella have recolonised the digestive tract. Klebsiella feeds on starch, so removing their food source in my digestive tract can starve/subdue them, resulting in a lowered immune reaction. When we eat starch, some of it tends to remain undigested in the digestive tract, creating in an abundant food source for the klebsiella. Clinical experience has shown that low starch diets help all patients with AS. Lactose is a secondary food source for klebsiella so elimination of lactose is also essential for some people.
In clinical practise, all 600 of his patients have shown high levels of klebsiella, and those who have managed to adhere to a low starch diet (reduced intake of flour and potatoes) have shown a significant improvement in symptoms, although damage done by the disease cannot be undone.
Crohn’s disease is also associated with AS. Patients with Crohn’s also have antibodies to the klebsiella bacterium. It is thought that Crohn’s disease and symptoms of Irritable Bowel Syndrome (IBS) are part of the AS spectrum. Low starch diets also help people with Crohn’s disease.
One of Ebringer’s patients, Carol Sinclair, who has both AS and IBS, has written a book, The IBS Low Starch Diet, which reveals how to manage this diet. She suggests eradicating all grains, cereals, lentils and pulses from the diet. If symptoms remain or recur, then eliminate rice and potato products (including sweet potato). Should symptoms remain or recur, then eliminate numerous other foods which include low levels of starch, including cooked vegetables and spices. There is a simple test to determine the starch level of a food. Buy iodine from a chemist, and place a drop on the food. If it contains starch, the colour of the iodine will change. It darkens from orange to shades ranging from inky blue to black. Some fruits and vegetables that are picked unripe (such as many found in supermarkets) contain high levels of starch, but have no starch when picked at full ripeness. Some vegetables develop starch in cooking but are starch-free in their raw state (actually the starch is present in the raw state but shielded by an “envelope” that goes through the digestive tract undamaged; cooking destroys the envelope and releases the starch). The iodine test assists in determining which foods are safe to eat.
The goal of the diet is to find out which and how much starch needs to be eliminated to maintain a pain-free, symptom-free life. Not everyone needs to eliminate all starch. One AS sufferer reports that after a strict no starch diet for 5 months, eating only meat, fish, vegetables, salad and fruit, he has been able to reintroduce bread, but cannot eat pasta, potatoes or rice. Carol herself has found that over time she has needed to eliminate more foods in order to keep her symptoms under control.
Following a low starch diet generally results in remission from AS and symptoms, but is not a “cure” for the disease, since once we have antibodies to klebsiella, they are always able to attack the B27 gene. It’s a matter of encouraging the immune system to register that there is no threat from klebsiella at this time, to minimise antibody activity.
After months of doubting my body, my diet, my belief in traditional foods and my belief that every single thing we put into our mouth affects our health dramatically, I'm actually very relieved to realise that I can return to that set of beliefs. The reason I have this condition is because I didn't start traditional foods soon enough! I caught a klebsiella infection because my immune system was run down - it's been in good shape since I fixed it with traditional foods. I'm now still eating a traditional-foods based diet, minus the starchy elements. There are a few things I'm still ironing out, such as that I can no longer take raw garlic - my fallback cure for any minor infection or cold. I also can't eat seaweed, so am still in the process of sorting out an alternative source of trace minerals.
If you have AS or know someone who does, please leave a comment to share your story.
You can read an update on my AS journey here.