Just diagnosed with AS and after advice about what has/hasn't worked for others.

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I've just been diagnosed with AS and am after some advice about what has and hasn't worked for others. I've had injections of triacinolone into both sacroiliac joints, heads of femur and another into my lower back. I'm keen to avoid the TNF-alpha injections if I can.

My history is of long term inflammatory bowel that resulted in blood levels of salmonella and shigella. My consultant thinks this is the trigger - and I've been on ciprofloxacillin for 4 weeks and due to continue for a further 3. I have avoided gluten for 7 years following 12 years of bleeding and 2 bowel fistula repairs prior to that.

I had to have a disc replacement in my cervical spine for prolapse into my spinal cord 2 years ago affecting my brachial nerve, because the surgeon said my neck was too straight?

I'm also taking Aquadetrim for osteomalcia (low vitamin d of 14) and borderline calcium levels.

I'm exhausted and have been needing to sleep at 5 pm in order to stay awake till bedtime.

I've had TCM acupuncture before for my two successful pregnancies (I had recurrent miscarriages) - has anyone had any success with this?

What about elimination diets? From what I've read, virtually all the foodgroups are out :-(

Any advice will be very welcome!!!

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8 Replies

  • Posted

    Oh, and I've had bone spurs developing on the knuckles of my fingers for about 6 years.
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  • Posted

    Hi there

    You sound like you are in a lot of pain and I am sorry to hear that. Can I suggest you do try an elimination diet - but first read a book called the IBS Low Starch Diet. It is by Carol Sinclair. It was my lifesaver.

    You only need to eliminate starch. It's difficult if you like fish and chips and bangers & mash sorry.

    But my god it is worth it. Following this elimination diet has helped my AS, IBD and IBS. Please consider giving the book a read, I think Carol Sinclair actually has a YouTube link now (modern woman clearly) which is a highlight edition.

    I have never felt so compelled to recommend something other than this book. I read it in 2005 and haven't taken an injection/steriod anything since, apart from when I accidentally fall off the wagon and all hell breaks loose. Then I just take one diclofenic or two and I am away laughing. I went from walking sticks to now competing in the NZ Coast to Coast adventure race this coming February. \o/

    Sue. NZ

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  • Posted

    Lucy

    As Sue has said - diet can really help.

    I have been gluten free for 20 years and do resort to a low starch diet on occassions. The main issue I have with new diet based approaches is the emphasis on Corn and Soya being OK!

    My mother took me to a private clinic at age 17 in Bansted, Surrey called the Burghwood Clinic where a top NHS Doctor called John Mansfield has treated 100's of arthritis cases.

    Dr John Mansfield later went on to collaborate with NHS Rheumatologists especially Dr Gail Darlington (who still works in Guildford today).

    Dr Mansfield put all of his patients in a two week elimination diet, consisting of foods that were less likely to trigger an inflammatory response. Although at 17 my arthritis was just starting and went up and down day to day - I did notice a lot less soreness in my back.

    All current arthritis medication is aimed at stopping the inflammation and preventing joint damage - despite 10 of millions £ of research - the message told to us that we / they still don't know what causes arthritis.

    Modern medicines have their place and can do a good job for some - but my Father struggled greatly with NSAIDs giving him a stomach ulcer - anaemia and other NHS drugs didn't help prevent the damage. Many forum posters with arthritis go from one drug to another with side effects.

    My advice at 17 was the beginning of a long journey for me as I am now 47 - but my diet changes have mostly stopped my arthritis in my back, neck, knee, hip, shoulders from progressing.

    I didn't change my diet fuly until age 26 - by which time i has put up with bouts of extreme pain and fatigue - my hips and ribs were starting to make me limp and my shoulder blades in my back had me coming home from work and lying on my front in agony - I even asked my wife to stand on my back to put pressure.

    The Internet was just arriving and my knowledge had been "primed" at age 17 - I am an IT Buiness Analyst in my profession and do a a lot of research. So I decided to see what else was out there on the "wide world" - that was 20 years ago and I have now read 100s of medical research papers on arthritis.

    For me its not just diet - i have learned that Arthritis is mostly caused by the body recognising foreign proteins as "self" - these proteins are not foreign to our gut they can usually be processed without our immune system being disturbed.

    Foreign proteins can be dietary or bacterial - but the main aim is to ensure that these things stay in the gut and do not pass in to the bloodstream.

    The rise of celiac disease over the past 20 years has both helped and confuse the picture for using diet changes for other diseases - but on the whole it has proven to those that doubt that something as simple as a little bit of "gluten" - (the protein is called gliadin) can trigger systemic reactions across the whole body. Celiac can be "silent" and sometimes barely affect the gut - but can then present initial symptoms as many other diseases - including arthritis, dermatitis and thyroid issues! My belief is that celiac is the tip of an iceberg - and non celiac gluten sensitivity goes undiagnosed.

    The most important recent research I have read is from a top Doctor at University of Maryland in the USA - Dr Allessio Fasano has proven that gluten opens up the gut barrier in most people to allow foreign proteins to pass in to blood stream.

    I do not have celiac (although I have not been tested) - but I have been wheat, corn and mostly soy and cows milk free for 20 years now - I take no medication.

    I have an 11 year old girl and a 14 year old boy - and the very first thing I will do for any condition they get will be to change their diets.

    On the bacteria side - top researchers at Kings College in London have identified the link between which genes are associated to a reaction to bacteria.

    Dr Ebringer - has identified that "otherwise normal" gut bacteria have an initiating role in rheumatoid arthritis and my own Ankylosing spondylitis. (diet change can help ensure that these bacteria stay in the gut).

    I have links to all these research papers if you are interested.

    The rise of the Internet has made me see that there are many 1000s like me that are having success via diet changes - it is not easy and although I am not 100% cured (too much carbohydrate and sugar feeding my gut bacteria gave me a slightly stiff sore back over Christmas !) - I am sure that I am in better shape that a drug based approach would have left me.

    So looking at other food might be an option.... I also gut out anything wheat based such as Glucose Syrup, maltodextrin adn grain based drinks such as beers, whisky - but I like my wine!

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  • Posted

    Dear both

    Thank you so much for your responses. I have been gluten free for nearly 8 years (after bleeding profusely at the age of 40 and 1 month). I have not had beer, whisky or rye products since either. This bout I was found to have traces of salmonella and shigella in my blood stream which I am still taking antibiotics for. I've taken rosehip (GOPO) for some years to ease the pain in my joints (the UK doctors didn't diagnose the spurs on my fingers which is quite annoying really). I am in such discomfort that I am taking tramadol every day - and that is not ideal long term. I'm also concerned about the cardiovascular effects of long term NSAIDS.

    my younger daughter is complaining of knee pain, bloating and diarrhoea at the age of 12, so after getting her to keep a symptom diary i've taken her off the gluten as well as a precaution. I'm going to try to get this elimination diet book asap.

    Please do send me the links - I will IM you my personal email.

    Thanks a million - it helps to know I'm not alone! L

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  • Posted

    Hi Lucy

    That's great to hear you have found a cause - and to hear that it is a bacterial link again WOW!

    One thing I also do is take a few supplements that I believe help me -

    - Magnesium (ensures calcium is retained and keeps my gut alkaline, most bugs dont like this)

    - Zinc (supports enzyme activity and detox lead)

    - Manganese (great for stiffness of muscles)

    - Selenium (detox - mercury? )

    I'm also a fan or the paleo diet - where they advocate higher protein and shun the medical advice for low fat diets. The view being that it is refined carbs and lectin based food (like pulses) that are making us all fat and ill and not fat from.

    This paper from a few years back focuses on RA - but beyond low starch I think AS sufferers should take a look also - it gives a ist of the foods most likely to cause inflammation

    http://www.thorne.com/altmedrev/.fulltext/4/6/392.pdf

    Kind regards, Sean

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  • Posted

    Dear friends

    It is so helpful to have someone to share this with. I saw the doctor today and had hip xrays which showed osteophytes (hip joint disease) and this explains why I am still in such pain, but has escalated my case to an orthopaedic surgeon and I'm frightened by the machine I now find myself in.

    Sue - I have decided to bite the bullet on the low starch diet in addition to my GF diet, so hopefully that will make a difference.

    I've done a bit of background research on here and hip joint involvement seems to worsen the prognosis. I had severe hip pain about 4 years ago, but took voltarol and waited for it to go away - now I'm wondering if this has caused the disease to progress more than it would have done :-(.

    Has anyone had any experience of using Tumeric to reduce symptoms and if so, what doses?

    Looking forward to your comments.

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  • Posted

    Lucy

    I am not medically qualified and all our situations are different - but I have used turmeric for flares and found it really calms down by intestines and does feed through to how my muscles and joints feel - you can google but I have used a small pinch of black pepper with a 3/4 teaspoon of turmeric in hot water and a generous spoon of honey! Tastes nice at bed time - even with the pepper. I'll PM some other research on turmeric as antii flamatory. Pepper enhances turmeric 10x

    I now avoid pills for headaches let alone my back / hip and ribs - I find ibruprofen actually gripes my stomach and can bring on a flare!

    Controlling intestinal permeability is important - but can't always be avoided - do you take any supplements?

    Best - Sean

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  • Posted

    Cool - have some here and will take it now! Looking forward to the research. There does seem to be something on Medscape.

    Re supplements: Rosehip (GOPO) 2 a day, or more with a flare up, Magnesium, vitamin d (prescribed high dose), neuromultivitamin (prescribed), omega fish oils, cherry extract, horsetail and biotin. Ginger for heartburn when ranitidine or omeprazole don't work, and now turmeric.

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