Fixie's Shelf

Natural treatment for ankylosing spondylitis - easy!

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I am so glad I have this blog. And I am so grateful to those of you who read it and leave comments. And I'm especially grateful to John, who left a comment on my first post about natural treatment for ankylosing spondylitis. He told me that drinking apple cider vinegar twice a day removed all his symptoms of AS.

Utterly intrigued, I googled it right away, and began testing on myself. And let me tell you, I feel better than I've felt in years!! I've only been doing it for two weeks and I don't know myself. I've ditched my starch-free diet - I'm eating whatever I want and I feel fantastic.

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 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.

One tablespoon of pure apple cider vinegar
One tablespoon of honey (omit if you have diabetes)

Mix in a large glass (16oz) of warm to hot water so honey dissolves
If necessary increase this to twice and then three times daily.Once at three times daily, Hills recommends gradually increasing the amounts of apple cider vinegar and decreasing the honey until the dosage is:

One dessertspoon of pure apple cider vinegar
One teaspoon of honey
Mix in a large glass of warm water

It doesn't have to be apple cider vinegar. I have kombucha vinegar on hand so I've been drinking that. I don't add any honey (that's just for taste). I've been putting a few dessert spoons of kombucha vinegar in a glass, topping up with water, and drinking three times a day. It's a bit sour but I find myself looking forward to it. It's full of probiotic cultures and kombucha is also reputed to have a wonderful detox effect.

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.

I have now quit my starch-free diet, and am totally in love with this apple cider vinegar treatment. I feel I have a new lease of life and freedom, and every single mouthful of bread and rice is something I feel supremely grateful for.

 

Edited two months later to add: the vinegar is still working fantastically for me, and it's more effective than the no starch diet, which I have now quit.  I eat whatever I want and feel better than I did before.  I've found I do best if I have 4 tablespoons of vinegar a day. My teeth started to brown a bit so now I make sure I rinse out my mouth after every time, or drink through a straw.  My favourite way to drink it is to make up a 1 litre bottle that has 4 tbsp 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 topped up with water. It's delicious and doesn't have the calories of honey (you need a lot of honey to make 4tbsp a day taste good).

 

Ankylosing Spondylitis Update

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It's been a little while since I posted an update on my AS (ankylosing spondylitis).  If you'd like to read previous posts about AS, click the link in my sidebar.

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, and that's basically because I cannot follow the diet fully for nutritional reasons.  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.

To explain what I said further about being unable to follow the diet... I have noticed that when I don't eat wheat for a long time (over the years the length of time has shortened.. it's currently about ten days), then I begin to get desperate cravings.  It feels like having low blood sugar.  If I ignore it, my symptoms become progressively worse, so that I'm extremely ill.  If I break my diet and eat wheat, I feel better, so much better, and all my cravings go away again, for about ten days.  I have the same experience with dairy, but the turnaround time is shorter - I can't go more than three or four days without dairy.  Since lactose is a secondary source of food for my klebsiella bacteria, I have struggled with fermenting my dairy products sufficiently to remove lactose.  

Removing lactose from dairy products

I've now found a solution to removing lactose from dairy products.  Instead of fermenting it for 36 hours (by which time it tastes revolting), I now buy lactase drops from the chemist.  Lactase is an enzyme which consumes lactose, and converts it into glucose.  By adding 20 lactase drops to 2 litres of milk, and leaving it in the fridge for two days, the lactose appears to be removed.  I can drink the milk and don't have any symptoms from it.  And it tastes delicious!  Because the lactose has been converted to glucose, the milk is sweeter.  It's like drinking milk with a little honey added.  I love it.  Now I can have my raw milk again, unfermented, and it's changed my life vastly for the better.  I drink two cups of raw milk a day and believe this to be healthy for me.

Wheat dependency

I have been unable to find out exactly what it is in wheat that my body seems to depend on, but I suspect gluten plays a role.  Yes, I think my body NEEDS gluten, despite all the stuff out there that says gluten is bad for us and hard to digest.  I have discovered that I can make seitan from wheat, which removes the starch and just leaves the gluten content.  Here's how:

Make a big ball of dough using white flour and water.  Run the ball of dough under the tap, and the starch content will drain away (turning the water milky).  If you knead the ball under the tap for ages (for me it takes about an hour), then at the end the water will run clear, and what's left is a much smaller ball of gluten.  What I do now is chop this into small pieces, boil it for a few moments like gnocchi, and serve it with tomato pasta sauce and lactose-free cheese.  It's not as good as pasta but it's not a bad substitute.

I find that by eating seitan, I can go longer without breaking my diet, but it doesn't hold me indefinitely.  I also get symptoms from it, probably because I can't get 100% of the starch out.  But the symptoms aren't as bad as when I break my diet altogether, and I recover quicker.

Glutinous rice

One of my best recent discoveries is that of 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've now got another black rice, this one from Thailand, and after using it for a couple of months, I think it's fine.  I haven't conclusively finished my testing but I'm pretty happy with it so far and don't think it gives me symptoms.  I also have white glutinous rice but the jury is still out as to whether that gives me symptoms or not.  I'll be interested to hear how those of you with AS go with this.  Do leave me a comment to let me know.  Being able to eat a bit of rice has changed my life for the better.

Between the rice and milk, my diet is so much easier to stick to now.

I'd love to know how those of you with AS are faring - your experiences with the diet, what you can and can't eat.. any tips you have fo the rest of us.  Leave a comment?

 

 

DIY Medical Research

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I have blogged here about my own journey with Ankylosing Spondilitis (AS).  When I was first diagnosed I jumped onto google and the results were depressing.  Even with a couple of hours of searching I couldn't seem to find a natural way to treat my condition and side effects of the drugs I read about looked dreadful.  My family, however, encouraged me to do real research, medical research, not just play around on google.  At first I was intimidated and daunted, but finally I got into the swing of it.  And boy am I glad I did!  It took a few months but eventually I discovered both the cause and a method of natural treatment for AS.  (Click the ankylosing spondylitis link in my sidebar to read about my discoveries.)

What I've done now is to write up how I did it, in step by step instructions, to help other people tackle their own research for medical condiions.  You may never find something as conclusive as I did, but you may be able to design your own treatment plan based on results from a number of animal studies and other theories about your condition.  

Inspiration

Why do your own research?

• Animal studies can be 30 years ahead of human studies – you may find ideas you can experiment with even though they are not established practise.
• Practising doctors don’t have much time for research, and may not be up on the very latest discoveries.
• There may well be published studies showing effective treatment for your condition, but they may have been dismissed by the medical establishment for inappropriate reasons, such as they don’t respect the individual reseacher because they’ve never heard of that person, or the method of treatment would cause the pharmalogical industry to lose money so they pressure doctors to ignore it.
• You, because you have the most to gain, are likely to care a lot more and hence do a better and more thorough job of this than someone for whom it is a theoretical exercise.

 

Doing your own research can make a huge difference!

• Dr Terry Wahls is a medical doctor in the US with multiple sclerosis.  She knew that animal studies are way ahead of human studies, so set out to comb the medical journals and find out all she could about her condition.  She found a correlation between certain nutrients and brain function, and designed for herself a diet that would cause her brain cells to work properly.  She translated mouse-sized dosages into human-sized meal portions, and experimented on herself.  She has, incredibly, gone from being bedridden with MS to being able to ride a bike and run.  She gave a TED talk which is fascinating.    If she can do it, so can you.  It was she who inspired me to do my own research and tackle my problems directly.
• Research has helped me with managing my condition: ankylosing spondylitis (AS).  The standard line from rheumatologists here in Australia is that no-one knows what causes it, there is no effective treatment, though symptoms can be reduced significantly with drugs, which have some nasty side effects and are quite damaging to the body.  By doing my own research I discovered that there IS someone who has researched AS and published 65 research papers on the topic!  He found both cause and a method of treatment which is now helping me.  When I bring his research to the attention of the rheumatologists I see, they dismiss it and say it’s a coincidence that diet helps my condition.

Getting Started

Make time for research

I suggest you allocate an hour, maybe three or four times a week, to do some research.  You should probably think in terms of spending at least a year like this – it may seem like an awful lot of time, but a few hours a week for a year isn’t really vast, and in the end, it’s your life that’s on the line, and you may well turn up something that will help enormously.

Ask yourself questions

Get yourself a notebook, or start a file, and write down a few questions.  Plan to start with a handful of specific questions:

• Get a general understanding of the mechanism of your condition.  What is known about it?  What characteristics are involved?  You probably already know a fair bit – jot down what you know, but don’t assume it’s correct.  Write a list of things you know about your condition that you should cross check.  And as you are researching and learn more, add to this list.  Create a list of confirmed items you know about it and a list of unconfirmed items.
• Write down your research goals in the form of questions.  You probably want to know how to manage key symptoms, whether they can be prevented, what causes your condition, whether it can be cured...
• Write a list of drugs and conventional treatments you know about, including what you are currently on, have been on etc.  For each of these you should find out how various doses affect people, their efficacy (how well they work), and what side effects are involved  Also check into long term effects of taking each drug.

As you research, add to your list of questions.  It may seem impossibly, overwhelmingly long, but don’t be put off by that.  Expect research to take a long time, and just slowly plod your way through it.  At the start, aim to get a bit of an overview, a bit of info to start your answers to each question you have already.  Then pick an area to go into in depth.

Where to research

Pub Med is a website that publishes abstracts (summaries) from published research papers.  This is a great place to start.  If you find the abstract from an article that is interesting, note it down and make note of the authors too.  If an article is particularly interesting, find a way to read the entire article. 

The Cochrane Library publishes reviews of medical research.

British Medical Journal is another place to look. 

Universities are great because you can search for published articles without paying any fees, and you can generally read the whole article.  While I was researching, my sister, who was studying at Melbourne Uni, let me log in using her account.  She helped me find the correct webpage to enter my search terms, and from there I went solo.  If you know someone who works or studies at a university, who is prepared to let you use their account, this is a very helpful way to go.

Search online for medical journals that relate specifically to your condition or a group that your condition is a part of.  For instance, I checked out rheumatology journals.

Google and the internet in general is a good way to get broader information.  For example, to understand lactose and its presence in various dairy foods, I used google to gain a layperson’s knowledge, and then cross checked a few snippets of this new knowledge with published articles.  Remember that anything you read on the net may be invented, or written by someone who doesn't know what they are talking about, so take it with a grain of salt, but it’s worthwhile because a lot of information has been translated into layperson’s language.

Research process

As you read abstracts and articles, you’ll probably find you don’t understand a lot of it.  Don’t worry about that.  Just let it wash over you, and trust that if there’s something interesting, it’ll stand out.  If you do find something that seems interesting, go back and read it a few more times, maybe look up a few of the words involved, and see if you can write your own version in normal English.  This will help you make sense of it.  Over time you’ll probably find you start to understand more, as you become more familiar with the terms used and the details of the condition.

So, as you search for articles, make notes the whole time.  If you find anything interesting, jot it down in your file, or copy over the entire abstract.  My dad, when researching, if he finds an abstract that is interesting, prints out the entire article to read later, while in the car or during other dead time.

If you find an article that shows promise, note down the authors and do a search for each of them individually, to see what other papers they have published on this topic.  This was what uncovered it for me.  I found an early article into the role of klebsiella in AS, and when I searched for other articles by the author, I not only turned up his much later research papers in which he had conclusively announced the cause of AS, but I also discovered that he had founded a website which was a forum for AS. This was a wonderful resource for me.  So check out your authors, both in published journals and on google.

As you read, you’ll come up with more questions.  Write them down.  Your list of questions may seem impossibly long.  Don’t lose heart.  Just plod.  Every now and then read over what you’ve written, letting your mind make new connections and ferret out new questions.  Write down theories for yourself, and then attempt to prove/disprove them.  Use your body as a human guinea pig.  If you find some ideas that are unlikely to be harmful to try out, give them a go, and keep notes and charts.

Keep a list of your search terms, and add to them as you find out new ones that help you.  For instance, my rheumatologist told me I had spondyloarthropathy, but as I searched, I came to understand that this was a newer term for ankylosing spondylitis, so I figured that research that had been around for a while would be under the old term.

Records

It’s also a good idea to keep a record of the state of your condition.  Starting with today, devise a system, ideally numerical, to give each day a rating.  That way you can rate your highs and lows.  You may get a picture over the period of a year or two.  And if you do find something, you can see if it really does impact you or if it’s just a placebo effect.  In your rating system, include a place to record items of interest.  For example, was there something that might have triggered this flare in symptoms?  Was there warning that it was coming?  Once you’ve established your rating system, go back over the past few years, and note down various events / symptoms relating to your condition. If it seems possible that diet is implicated, jot down what you eat.  If you are taking medications, note them down and the dosages and side effects.  The more detailed your records, the better your chances of tracking your progress accurately.  This will be helpful if you start experimenting on yourself.

Goodluck, happy researching, and please leave a comment here to let me know how you go, especially if you turn up something useful.

Ankylosing Spondylitis Update - what I eat

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For those of you who, like me, have Ankylosing Spondylitis (AS), I thought I would post here what I eat.  I found this sort of info on others' blogs incredibly helpful in designing my diet.

I can eat:

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).

Protein:
All unprocessed meat
Seafood (unprocessed only)
Eggs
Blanched almonds
Pine nuts
Sesame seeds

Dairy:
Butter
Dry curd cottage cheese
SCD yoghurt (milk that has been fermented 24 hours to reduce lactose) (this still gives me some symptoms as it is not totally lactose free)

Condiments:
Sea salt
Mustard
All herbs
Garlic infused oil (remove garlic before serving)
Spice infused oil (remove spices before serving)
Fish sauce,
soy sauce,
tamari
Vinegar
Honey (a little sugar is ok)

Fats: olive oil, coconut oil, butter, lard, animal fat.

I don't eat:

Grains (wheat, rice, spelt, corn, etc)

Starchy vegetables & fruit:
Peas
beans
potato
sweet potato
beetroot
banana

Processed meat such as sausages or salami

Nuts or seeds other than blanched almonds

Dairy products with lactose:
Milk
Yoghurt
Soft cheeses
white cheese 

Thickened sauces such as oyster sauce or ketjap manis, or processed curry pastes

Condiments:
Ginger
garlic
pepper
spices.

 

A typical day of meals:

On rising: 1 tsp cod liver oil, 3 drops iodine, 1/2 tsp magnesium chloride, and 1 tsp austrian minerals dissolved in freshly squeezed orange juice.

Breakfast: SCD yoghurt, SCD cream (made the same way as yoghurt), finely chopped activated blanched almonds, dark coloured fruit such as berries, peaches, apricots, papaya.

Mid morning: Green juice made with kale and beet leaves from my garden, beetroot and apple.

Lunch: big plate of vegies or salad, with some eggs, meat or fish, topped with at least a tablespoon of butter.  Sometimes I have soup.

Mid afternoon: Vegie juice made with beets, carrots, apples and ginger.  Activated blanched almonds and dried fruit.  (If I don'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 crave something in the evenings, and when the cravings are high, I eat either a bowl of fruit with SCD cream, or else I have a homemade icypole made with egg yolk, SCD cream or dry curd cottage cheese, strawberries and honey.

Drinks: through the day I drink two glasses of SCD yoghurt, 1-2 glasses rejuvelac, 2 or more glasses beetroot kvass, and sometimes I have a herbal tea such as roibos or the korean corn tea.

 

Do you have AS?  I would be very interested to hear about what you eat and how you manage your diet, and how effective that is.  Please leave me a comment with your story.

 

Natural Treatment for Ankylosing Spondylitis

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Edited to add: Thanks to a comment left on this post by John, I have now discovered that drinking vinegar four times a day has dealt with almost all my symptoms of ankylosing spondylitis. If you are looking for an easy natural treatment, way better than the diet I mention here, read my post on it.

 

Here's the original blog post:

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?

While it was good to suddenly understand why my back has hurt so much that I needed to have several lie downs most days (I blamed that on puppetry, which is very bad for your back), why I seemed to have less and less energy as time went on (my afternoon naps were getting longer..), and that the weird rash I've had on my hand for a few years is a common symptom of AS, and to understand why I could barely move my body in the morning until I'd forced myself through several yoga salutes.... it was also very disturbing (read: devastating) to hear from the doctors that there is no cure, and that the "treatment" is drugs.  My rheumatologist, after brutally handing down my diagnosis, announced, "We'll be seeing you in here several times a year over the next few years, we'll start with the light drugs, and if they don't work we'll bring in the heavy drugs."  And he handed me a prescription for anti-inflammatories, along with another prescription for a drug that would help prevent stomach ulcers caused by the first drug.  Gulp.

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.

For the past several months, I have been eating a no-starch, low-lactose diet, and the difference is remarkable.  All sorts of weird pains and symptoms disappeared instantly (eg I twisted my ankle some time ago, and since then my foot has been a bit sore when I first stand up to start walking - this resolved itself immediately when I changed my diet).  I have been on a very strict diet, gradually introducing one food at a time to see how it affects me.  At first the changes were very difficult, and I found it difficult to get satisfied after a meal.  Now I accept that without grains and starches to fill me up, I don't get that really "full" feeling after a meal, but my food DOES give me the energy I need to carry me through to the next meal.

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.

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 that a low starch diet can help.  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.

You can read an update on my AS journey here.