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Sorry for writing a book I just learned some stuff and wanted to share it. Please feel free to let me know if you see any errors with what I wrote. Also I kind of wanted to do this for myself so I could explain it to my family and friends easier. I tried to break it down into sections to make it easier to read.
The Science behind AS:
Ankylosing Spondylitis or AS is caused by a bacteria caused Klebsiella pneumoniae which is closely related to cells in our body. More specifically they mimic a gene called HLA-B27. As the immune system attempts to destroy the klabsiella, it also destroys the B27 cells causing the inflammatory progress of AS. The two major areas AS causeís problems are the joints and the gut.
The thing that I find kind of strange is people that are HLA-B27 negative (like me) are also seeing successful results of the Low/No Starch Diet and I'm not the only one. Trust me I'm not complaining though. I think the reason I'm HLA-B27 negative is because I have Ulcerative Colitis which is a type of IBD. Their are only 2 types of IBD, Crohns and Ulcerative Colitis and I guess for some reason Carol said people with Crohns and AS are more likely to be HLA-B27 negative. I'm thinking that maybe since I have the only other type of IBD that maybe that's why I'm HLA-B27 negative but who knows. I've also been told that some people find out they are negative just to find out with another test they are positive. If they let your blood sit too long before they test it they can get a false negative. Also the reason they tell you to get this checked is because people with this gene react better to this diet. Basically I don't really care as long as this diet works for me which it seems to be working already and I'm only on day 9 of the diet today.
How the Low Starch (No Starch) Diet was discovered:
Basically the Low Starch Diet was discovered by luck by Carol Sinclair and Professor Alan Ebringer (separately). The way Carol discovered it was she was diagnosed with IBS and started actually adding more starchy foods as recommended by her doctor which made things worse. Then she said in 1986 she was "at my wits' end" and she decided to try eliminating wheat from her diet after watching a TV documentary about food allergies with wheat. She saw results right away. After testing all different foods she found out it was actually starch that caused her problems and if she eliminated it she could keep her IBS under control. Later Carol found out she also has AS and tested positive for HLA-B27 (a marker in your blood that most AS patients have except most of them with Crohn's disease and AS which for some reason test negative for HLA-B27). Professor Alan Ebringer who is a Professor in Immunology and also specializes in the field of rheumatology figured out that a bacteria called Klebsiella pneumoniae was the cause of AS which in turn caused other problems like IBS, IBD, Iritis etc. The thing the professor couldn't figure out was how to treat patients infected with these bacteria. One day one of his AS patients asked him to devise a weight-loss diet. The professor recommended that he eat as much steak and as many tomatoes as he wanted, and drink a bottle of red wine daily. His patient did this and told the professor not only did he lose weight but his joint and back pains went away. After hearing this, the professor came to the conclusion that the bacteria must live on the undigested starch in the gut and eliminating starch from the diet must have starved them. Further research confirmed the bacteria did in fact live in the gut and grow on remnants of the starch in our diet. That professor is a smart guy. He put his patients on a low-starch diet and his patients reported amazing relief from symptoms.
How I became diagnosed with AS:
I started to have back problems about my junior year of High School. Then one day I woke up with hip pain in my left hip so bad I couldn't walk and my mom had to call me in sick to school. I think she thought I was faking it. She set up an appointment with our doctor and of course at that time the pain went away and my doctor told me it was just growing pains. This made it even worse as I think my mom now definitely thought I was faking it and I felt like a wimp even though I know the pain almost brought me to tears. Then it happened again and my mom took me immediately to the doctor who had me lie down and try to lift my legs one at a time. I lifted my right leg no problem then when I tried to lift my left leg (the leg I had the hip pain) I couldn't lift it at all. At this point the doctor referred me to an arthritis doctor. The arthritis doctor diagnosed me with AS. Then did my blood test and said I was HLA-B27 negative. He then put me on Sulphasalazine which didn't really seem to do much for me but make me tired all the time and cause Jaundice (yellow) around my eyes. When I met my wife in 2001 (her background is in health care) she was the one that noticed the Jaundice and said I should probably get off the Sulphasalazine. Then she said she knew a chiropractor I could go to. Not knowing about Chiropractic care I decided to try it out. After meeting with the Chiropractor he did x-rays and said I have scoliosis. I thought the arthritis doctor must have been wrong with the AS diagnosis and my problem must just be scoliosis since I wasn't HLA-B27 positive and from what I read like 1% of people with AS are HLA-B27 negative. I continued to get adjusted once every couple weeks which seemed to help but I still had flare ups where my hip started bothering me to the point I was limping. I was convinced this was because my spine was pinching nerves that caused muscle spasms in my leg. Then I developed IBD (Ulcerative Colitis) and thought great I am falling apart at the age of 26. The doctors put me on Asacol starting with 3 pills a day. This increased to 6 pills a day, then to 9 pills a day and I was still having uncontrollable bowel movements. I was so frustrated with these doctors just feeding me pills and NSAIDS which I found out I shouldn't be taking because NSAIDS cause problems with people that have IBD. A couple weeks ago my wife and my mom (also with scoliosis) said I should go to a spine doctor. I was so frustrated and felt I have to figure out what the heck is wrong with me. After all I am only 28 years old and I feel like an old man with back, neck and hip problems and uncontrolled bowel movements. After going to the spine doctor she asked me if I ever heard of Ankylosing Spondylitis. I couldn't believe I was hearing that again! I said yes they diagnosed me with that before but I was HLA-B27 negative and also found out I had scoliosis which I thought was the problem. The doctor said my scoliosis was very minor and I had all the symptoms of AS. I have problems breathing (basically I breath with my diaphragm and my chest doesn't expand), when I bend over to touch my toes my hips do not rotate, my cartilage in my upper left hip was completely gone and my bones were fused and where my ball socket connected to my hip there was very little cartilage and I had a cyst (hole) in my cartilage. My right hip was also very thin with cartilage. Also IBD is a symptom of AS which I didn't know. The doctor said there is nothing I can do except for physical therapy and keep as mobile as possible and in about 5 to 10 years I will probably have to have my hip replaced. That was probably the most helpless feeling I felt in my life. I decided to get on the internet that night and research everything I could about AS and if there was any breakthroughs or anything people were doing other then taking pain pills. Then I came across kickas.org and found the London diet. I started reading every post I could and decided to try the No Starch diet the next day. Thank god for the invention of the internet.
My experience so far with the No Starch diet:
Day 1 was pretty hard. Luckily my first day was on a Saturday and it was a holiday weekend so I could start this diet at home and not have to worry about lunch while at work. I decided to only eat stuff I knew didn't have any starch. Eggs and oven cooked fish with olive oil. I cut back my IBD prescription from 9 pills to 6 pills and I could tell results even my first day.
Day 2 I decided to cut back my IBD pills to 3 and add broccoli, red grapes, pears and apples. Then I started having bowel problems again. I thought it was maybe because I was cutting back on my IBD pills.
Day 3 I still had problems and thought I'd research some more on kickas.org. While reading more on kickas.org I found out pears and apples have starch. The starch in pears and apples is dependent upon time of the season and how ripe they are. Sometimes I guess they don't have starch at all. Iodine test will tell you. Take a small piece of the food and drop iodine on it and if it turns dark blue or black it has starch if it stays the red/orange color it doesn't have starch. I didn't have any iodine so I just decided to eliminate pears and apples for the fourth day. This helped tremendously.
Day 4 I was able to completely get off my IBD pills and was able to control my bowel movements. This alone is enough reason to stick with this diet even if I don't have any improvements with my joint pain. At this point my stomach was getting very sensitive and I was able to tell immediately if a food bothered me. Broccoli seemed to make me gassy and burp a lot and red grapes gave me a little upset stomach. I wasn't surprised to find out later that the skin on "red" grapes has some starch and bothers some people. I also found out coconut was safe but couldn't find unsweetened coconut in the grocery store so I decided to get a whole coconut and cut it open. This was definitely a task but worth it because coconut didn't seem to bother my stomach. I also got some pineapple and found out that bothered my stomach (pineapple has a little starch). I also got strawberries and blueberries which didn't bother my stomach at all. I tried hamburger and it seemed to bother my stomach for some reason. I got online and found out other people are also affected by hamburger. I thought maybe it was just the additives in the meat so I went to an organic store and got buffalo burgers which also bothered my stomach. I'm not giving up on this one; I also got turkey burgers (I'll let you know how they go).
Day 5 was really good. I found out about coconut flour and made some bread and brownies with coconut flour. The brownies made my stomach upset a little but the bread didn't seem that bad. The bread was actually cranberry walnut bread which I put too much flour in because the mix looked runny and it came out real rich and a lot like cake. I made it again with what the recipe called for and it came out soggy but still bothers my stomach a little if I eat too much. I also made it with clarified butter instead of coconut oil. I made my own clarified butter (which "Kiwi" on the forum recommended) by cooking it on low heat until it bubbled white foam which I removed and then ran it through a strainer (the same strainer I used to sift the coconut flour). I think it's bothering my stomach a little because the recipe calls for sugar. I just found another coconut flour bread recipe which doesn't call for sugar and I'm going to try that one today. I'll let you know how it turns out.
Day 6 I decided to add some dairy by trying some hard cheese (recommended by the forum). The cheddar cheese and gouda cheese upset my stomach a little but wasn't that bad. I also tried a couple almond slices which didn't seem that bad. Then I tried a pickle and an olive (pickle has vinegar and the olives have Guar Gum which has starch). The vinegar from the pickle bothered my stomach a lot and the olives bothered my stomach a little.
Day 7 I added cheddar cheese to my eggs and it bothered my stomach a little (and eggs never bothered my stomach so it had to be the cheese). I'm also wondering if it made a difference that the cheese was cooked as I've heard starch is pulled out of some food like vegetables when cooked. I'm still trying this one. I also added ham and oranges which didn't seem to give me a problem. I then decided to try a burrito bowl at my favorite Mexican restaurant which I have been craving. It tasted great but tore up my stomach. It had white rice (which strangely enough is the one starch that doesn't affect a lot of people with AS), steak, cheese, lettuce, mild salsa and sour cream. I'm going to try them separately to see how they affect me.
Day 8 I decided to take it easy and eat what I knew didn't bother me. My stomach immediately healed and I went back to normal. I then tried some turkey pepperoni which didn't seem to bother my stomach, and then I tried soy milk which tore up my stomach. I found out later Soy has starch in it (imagine that).
Day 9 (today) I decided to try some orange juice which bothered my stomach. I've read the white part from the orange has some starch and sometimes orange juice can cause problems with IBD. I guess that's true for me. I'm going to try some cranberry juice as most berries I seem to have no problem with although I haven't tried cranberries yet (that's next). Also like I said I'm making that new coconut flour bread recipe today so wish me luck. I think I might try the almond flour too for a couple recipes to see if it bothers me. I also just read that goat cheese doesn't bother people with IBD but I haven't tried this yet. Also buffalo milk (which I've never seen before is supposed to be good). I'm going to go to the organic store to see if I can find this. As you can see it seems like there are some definite safe foods but you also have to find what works for you on this diet.
My lists so far:
Havenít yet tried bread or pasta but I'm guessing bad since that's the basis of this whole diet Walnuts Vinegar Pickles (vinegar) Orange juice
Moderate foods (in moderation not that bad but still bother my stomach a little):
Almonds Sugar Coconut (mild upset stomach if I eat too much) Apples Pears Olives Pineapple Red grapes (mild upset stomach) Oranges (mild upset stomach) Cheese (gouda and cheddar tested so far) - I think worse when cooked, still testing this Pepper
Fish Chicken Ham Pork Eggs Blueberries Strawberries Green grapes Iceberg lettuce Mixed greens Olive oil Salt Raisins
Don't know yet about turkey pepperoni or turkey bacon. I tried these but I also had orange juice with these which I pinpointed caused me problems.
"Happiness is a journey, not a destination; happiness is to be found along the way not at the end of the road, for then the journey is over and it's too late. The time for happiness is today not tomorrow." ~ Quoted by Paul H Dunn