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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.
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.
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?