When I was diagnosed with Ankylosing Spondylitis (AS), and told by doctors it is an auto-immune disease, a form of inflammatory arthritis, for which the cause is unknown, and treatment consists of ‘heavy drugs’, I was devastated. Google searches didn’t yield up more information, and it took me a long time to uncover effective, natural ways of treating the disease. In the process, I also discovered that the causes are in fact known to some researchers. This article covers the best of what I know about AS and how to manage it.
(By the way, please read all the way to the end before you leave a comment.)
Natural Treatment with Diet
The most effective treatment I have found for AS is to follow a lectin-free diet. This has dramatically reduced my AS pain and is currently my preferred way of treating it.
Natural Treatment with Vinegar
After my first post on my old blog about AS, one of my readers, John, left a comment telling me that drinking apple cider vinegar removed all his symptoms of AS. This was life-changing for me at the time. Vinegar is the second-best treatment I have found, and I used this method for several years. However, I find the lectin-free diet mentioned above to be more effective so I prefer that. But vinegar is a much easier treatment than a complete diet overhaul. Be aware that taking a significant amount of vinegar may have long-term consequences for your health. I have not been able to find any information about this though.
It seems vinegar was suggested by Margaret Hills, back in the 1950s, in her book about inflammatory arthritis. From her nursing training, she understood that inflammation is a build up of acid. It’s the acid that gradually damages our joints if we don’t get rid of the inflammation. She also knew that when you consume vinegar, it becomes alkaline in the body. So her theory was that the alkaline vinegar would neutralise the acidic inflammation. Lots of people with all kinds of inflammatory arthritis have found relief this way, thanks to her book on the topic.
Instructions for how to take apple cider vinegar:
Use live, raw vinegar, with the cultures in it. If you see little strings or sediment, that’s a good sign. Any kind of vinegar is fine, though apple cider vinegar apparently offers many other health benefits. I personally make my own vinegar by fermenting kombucha for longer and prefer to drink that. It’s full of probiotic cultures and kombucha is also reputed to have a wonderful detox effect.
Put 1-2 tablespoons of vinegar in a glass and top up with water. Never drink vinegar straight or you’ll burn your insides. Drink, and follow immediately with plain water to rinse out your mouth. Leaving vinegar on your teeth 2-4 times a day can erode the enamel on your teeth, so always wash it off. You can also drink it through a straw, taking care not to get vinegar on your teeth. This a bit intense at the back of your throat.
When you first start taking vinegar, it will feel very sour, so put less vinegar in your glass, and gradually work up to larger amounts. My kombucha vinegar is much milder than the apple cider vinegar from the shop so I put more in the glass. I aim to have it as sour as I can stand.
Margaret Hills suggests adding honey, and using warm water so the honey will dissolve, to make it easier and pleasanter to drink. I prefer to use stevia drops instead, as they have no calories.
I’ve found I do best if I have 4 glasses of vinegar-water a day. I have a glass on rising, another mid-morning, one mid-afternoon, and a final glass before or after dinner. These days I put it all in a one litre drink bottle along with 5 drops of stevia and a teaspoon of Vitamin C. The Vitamin C helps me fight off colds – it’s not for the AS. But I’ve noticed that having it in my drink bottle is more effective than taking a single dose of Vitamin C morning or night. I have noticed with the vinegar water that if I drink the entire litre, say, in the morning, it works just as effectively as if I spread it evenly over the day. But I find this makes me feel a little nauseous on an empty stomach so it’s best for me to sip it slowly after food.
My favourite way to drink it is with this recipe I copied from a Braggs drink:
In a one-litre bottle place 4 tbsp apple cider vinegar, ginger infusion (I grate ginger and steep it in boiling water then strain – I keep a bottle of this in the fridge ready to go), 40 drops of stevia, and then top it up with water. This is delicious like a soft drink – but a bit intense for every day. I use only 5 drops of stevia most days.
Apple cider vinegar tablets:
I later discovered that I could buy buy apple cider vinegar in tablet form. For a period, I took 4 capsules per day of Nature’s Way apple cider vinegar tablets at 1200mg strength. I didn’t find it as effective as drinking the vinegar as a liquid but it was a relief to have a break from drinking it at times, and is handy when travelling.
How long does it take to work and who will it help?
It took about 5 days before I started to feel better. After that, for the next 10 days, every day was a little better. Apparently it takes a whole month to get the maximum benefit of this remedy.
This remedy helps all kinds of inflammatory arthritis, including rheumatoid arthritis and reactive arthritis. It should remove inflammation, so pain associated with inflammation should be reduced or disappear. It won’t help pain that is caused by damage to your joints that has already occurred though.
Natural Treatment with Diet
Before I discovered the vinegar treatment, I managed my AS by eating a starch-free, lactose-free diet. After starting vinegar, I found my symptoms were better than they were when I followed the diet, but some readers of my blog have reported that they do better by following both the diet and the vinegar treatment, or they prefer the diet than the vinegar. However, I have now discovered that a lectin-free diet is even more effective for me than this one, and significantly more satisfying, so I would suggest you try that before attempting the starch-free diet described here.
A starch-free diet is a restrictive, difficult regimen to follow, but the pain and degenerative problems caused by AS can be a very good motivator if the diet works. Unfortunately starch-free diets are pretty-much unheard of in our society, so it can be challenging to work out exactly what you can eat and what you can’t. I found that eating only the tiniest amount of starch (a single breadcrumb, or a pea) was enough to set off my symptoms dramatically, so it took some time of following a very strict diet, and gradually adding in one food at a time, to discover what foods I could eat and what I couldn’t.
Everyone’s body responds differently to the diet, so if you are trying to make this work and struggling with it, I would suggest starting with a very limited diet of foods known to be starch free, and after the pain has reduced, add in one new food at a time, observing your pain levels the day after adding in the new food. Some people tolerate lactose fine, others need to eliminate that from their diet as well. I will list here what I ate on this diet as I found this sort of info on others’ blogs incredibly helpful in designing my diet.
I could eat:
Rice: glutinous rice – both black and white. Glutinous rice has a different-shaped starch molecule than regular starch, and in me it didn’t trigger my symptoms.
Vegetables: broccoli, cabbage, cauliflower, leek, brown onion, lettuce, rocket, celery, spinach, silverbeet, red and yellow capsicum, carrot, pumpkin, fennel, zucchini, avocado.
Fruits: tomatoes, berries, papaya, grapes, apples, pears, pineapple, melons, passionfruit, persimmon, mango, coconut, citrus fruits (juiced and well peeled are fine but avoid the white pith).
All unprocessed meat
Seafood (unprocessed only)
Dry curd cottage cheese
Milk, cream and yoghurt to which I had added 10 drops of Lacteeze per litre, and left to sit in the fridge for 2 days. Lacteeze is a product consisting of lactase enzymes, which over the course of two days, consume the lactose in the milk and convert it to glucose. The resulting milk is pleasantly sweeter as a result. Be sure to purchase Lacteeze drops, not a tablet or powdered form, which may contain starch.
Garlic infused oil (remove garlic before serving)
Spice infused oil (remove spices before serving)
Honey (a little sugar is ok)
Fats: olive oil, coconut oil, butter, lard, animal fat.
I couldn’t eat:
Grains (wheat, non-glutinous (normal) rice, spelt, corn, etc)
Starchy vegetables & fruit:
Processed meat such as sausages or salami unless I could guarantee it was made without starchy ingredients
Nuts or seeds other than blanched almonds
Dairy products with lactose:
Thickened sauces such as oyster sauce or ketjap manis, or processed curry pastes
A typical day of meals:
On rising: 1 tsp cod liver oil in dissolved in freshly squeezed orange juice. (Fish oil apparently helps arthritis.)
Breakfast: Lactose free yoghurt, milk and cream (made the same way as yoghurt), muesli made from finely chopped activated blanched almonds, dried coconut, black sesame seeds, and dark coloured fruit such as berries, peaches, apricots, papaya.
Mid morning: Vegetable juice made with kale and beet leaves from my garden, beetroot and apple, or a cup of warm bone broth (stock) with fish sauce and vinegar added.
Lunch: big plate of vegies or salad, with some eggs, meat or fish, topped with at least a tablespoon of butter. Sometimes soup. Sometimes black glutinous rice with eggs and greens.
Mid afternoon: Activated blanched almonds and dried fruit. (If I didn’t eat almonds twice a day I crave carbohydrates. And I can’t get through the afternoon without a snack.)
Dinner: Another big plate of vegies, often a roast or a stew, with meat or fish, and plenty of butter.
Dessert: I often craved something in the evenings, and when the cravings were high, I’d eat either a bowl of fruit with lactose-free cream, or else I have a homemade icypole made with egg yolk, lactose-free cream or dry curd cottage cheese, strawberries and honey.
Drinks: through the day I drank two glasses of lactose-free milk, 1-2 glasses rejuvelac, 2 or more glasses beetroot kvass, and sometimes I had a herbal tea such as roibos or the korean corn tea.
About glutinous rice
I read on an AS blog that glutinous rice is made up of a different form of starchy molecule – amylopectin, while most starchy products are made up of amylose. Apparently klebsiella bacteria can consume amylose but not amylopectin! Glutinous rice is made up of amylopectin, not amylose, so theoretically it should be safe for those of us with AS to eat. My first attempts at this failed – I bought a black rice which I thought was glutinous rice, but now I think was actually not glutinous. At first it was fine but after a while my klebsiella evolved and I began to get symptoms from it. I then sourced a proper glutinous rice and had no symptoms from eating that over a longer term.
While once I had adjusted to the diet, I was okay on it for a year, but after that I think some stores of nutrition became depleted, because I found it increasingly difficult to follow, especially living without wheat. I noticed that when I didn’t eat wheat for a long time, I began to get desperate cravings. It felt like having low blood sugar. If I ignored it, my symptoms become progressively worse, so that I became extremely ill. If I broke my diet and eat wheat, I felt better, so much better, and all my cravings would go away again, for about ten days. When I tried to quit dairy I found the same experience. Some people seem to do fine on this diet and don’t report the problems I felt, and I never did get to the bottom of how to handle it.
About Ankylosing Spondylitis And Its Causes
AS is a form of inflammatory arthritis, where your joints become inflamed. 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. So it’s important to treat the AS in some way – leaving it untreated will eventually lead to permanent joint damage and pain.
When Google searches for natural treatment for AS didn’t yield up anything for me, 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. If you’d like to read more about how to DIY your own medical research, I’ve written about that here.
It took me two months, but eventually I found IT – the answer. 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 through diet.
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 attack the HLA-B27 gene, causing a range of physical problems, including joint inflammation.
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.
When I started eating a no-starch, low-lactose diet, and the difference was remarkable. All sorts of weird pains and symptoms disappeared instantly (e.g. I’d twisted my ankle some time before, and had pain in my foot for months – this resolved itself immediately when I changed my diet). At first the changes were very difficult, and I found it hard to feel satisfied after a meal. Eventually I came to accept that without grains and starches to fill me up, I didn’t get that really “full” feeling after a meal, but my food DID give me the energy I need to carry me through to the next meal.
A bit more about AS
Thanks to a suggestion by someone who commented on my blog, I bought and read Micah Cranman’s book / DVD package. I would recommend this resource to anyone with AS, though I wouldn’t go as far as to say that my AS is in remission as a result of his book. My AS is not in remission at all, it is simply managed through drinking vinegar. The diet is the same as the one I’ve already described here on my blog (for free) – starch free. Micah does go into a bit more detail about a few ingredients which I was previously unable to find out whether they were starchy or not. I found that helpful.
He also advises that a first step towards improving your AS is to take fish oil – he recommends krill oil. I went out and bought some and started taking it, but had no improvement at all as a result. But then I realised that I already take cod liver oil every morning, and probably this fulfills the same function. So I’ve probably already got the benefit that can be had from fish oils. But a note to those of you out there with AS, experiment with fish oils.
I’d love to hear from you.
Since I started telling people about AS, I’ve discovered almost everyone seems to know someone who suffers from the weird problems of joint pain, digestive troubles and skin troubles. Or they know someone who has already been diagnosed with AS. Since rheumatologists here in Australia don’t seem to know about Ebringer’s research, feel free to spread the word and let people with AS know about this article. Ebringer has started a forum for people to share their progress and diet tips, and it’s a great place to start. Carol Sinclair’s book is another good starting point.
If you have AS or know someone who does, please leave a comment to share your story. I sometimes get people asking me to give guidance or help them with their condition. Sorry, but I’m not a doctor and can’t do that. The purpose of my blog is to give you information so that you can use it to help yourself.