My AS diagnosis and experience

My arthritis started at age 17 - the same as my Dads - he has had 2 hip replacements and in the 1970's had severe gut trouble and ulcers from NSAID's.  His disease progressed quickly with a frozen neck, spine rib cage and the hips.  He is 70 this year - and doing well despite his history [smile]

My problems started in my back between my shoulder blades, spine and neck at age 17 - and also a sore shoulder rotatorcuff.  I was tired a lot of the time but my disease was not as severe as my Dads had been at the same age

At age 19 - my mother took me to a private clinic in Bansted, Surrey as I was getting rib stiffness, sternum pain, and my midle back was very sore - and occassional lower back pain.

I would spend hours in the evening stretching - laying on my front, rolling around (to click my back) and sometimes hanging from the landing half way up the stairs to stretch my back and neck that felt like it was stiffening.  I had refused NSAIDs because of my Dads history - I am so glad I did.

This trip to the Burghwood Clinic was my first path to alternative health - but realised later that they were actually more aligned to mainstream - and were mentioned in the Lancet regarding studies done by rheumatologist, Gail Darlington in to elimination diets.  The doctor I saw there, Dr. John Mansfield went on to write books about diet and arthritis.

I was 19 - and was put on a strict elimination diet which limited me to about 7 non-allergic foods and mineral water over a 2 week period - I remember being with my now wife at Haywards Heath market and being able to smell a jacket potato and coffee about 1/2 mile away!  It was hard work - and then when I went back to the clinic I said I didn't fell much difference.  I went for another 2 weeks with a few modifications.

I was just 19 and my disease at this stage was not full on aggressive but more painful - I remember on the last few days of my 4 saying to my wife, I feel looser and less sore, however I told the consultant that I was not sure that I was better.  I was guilty about the money my mum was spending on the treatment - and it was hard to differentaite old stiffness and damage from new inflammation at this early stage of my disease.  I was a born optimist - and was a sceptic.     

I returned to a normal diet - you know the 1980's Findus crispy pancakes, McCain frozen pizza that my working mother used to give us mid-week.

I kept up the stretching - and I had in mind the improvement that I thought I had felt and I did always think that my good days and bad days or stiffness and pain were driven in some ways by what I ate - or related to my bowel movements (too much information.....). 

Between age 19 and 26 - the disease slowly got worse with lots of lower back pain, lumpy feeling sore back, limping from stabbing sore hips, rib cage.  Some days I would come home from work and just sleep at 4.30 afternoon.

However, I still kept quite fit and exercised a lot - which is very good with AS - I even did karate, swimming, squash.

At age 26 after some stressful times my disease hit me hard - I got new levels of pain, I used to ask my wife to stand on my back (not kinky!) to massage the stiffness of the muscles either side of my spine and to pull my legs to stretch my hips.  I have quite a high pain thresh hold.  I took pain killers like ibruprofen sometimes - with regular migraines a factor in my overall state. 

Then the breakthrough - a friend of my wifes had been completely bedridden with ME and had visited a Dietician in Canterbury and had improved  massively... I was scepticial.  I was told that I was reacting to Wheat, Corn, Cows Milk, Red Wine.  AArgh - my favourite treat was 2 chocolate digestives and a glass of milk!

The other thing the dietician gave me was supplements -

- Magnesium / Calcium combined ration Magnesium 2 to 1 Calcium

- Manganese Citrate

- Zinc

- Selenium

It took just 2 months and I started to feel less stiff and less pain - a few times I got weak and couldn't resist a pint of beer or Guiness and my god! the pain in my hip... there was definitiely something happening.  It took me a good year or two of occassional lapses for me to realise that I had to be good 100% of the time with certain foods. I drink red wine today. 

I even got to the stage that when I had wheat in food I would get a nosebleed - and could tell if I had eaten wheat as I would get sore blind spots in my nose, like infected hair-folicules.  After eating wheat or corn I would get 2 weeks of pain - and lethargy.

In the first 10 to 15 years I was eating 100% Rye bread and I did not react - and Oat Cakes and marmalade were my staple breakfast, but I have now given these up too.

So now - I check everything - no Glucose Syrup (because its corn / wheat based), no bread unless I make it myself with Rice Flour - I cook a lot and can make a great pizza with Rice Flour.  We eat no packaged foods at home - just fresh cooked.  I have been "glutened" by the occassional Indian takeaway.

Last month before Easter - I ate a huge bag of Cadbury Mini Eggs over 2 days - mostly after a work do hangover - the next 3 weeks were hell as my hip started to get sorer and stiffer and my lower back seized to the point where sitting down - especially in a car seat was agony.  I didn't take any NSAIDs.  

I strongly believe that that my disease improvements are driven by a few factors -

- Gut flora balance (lower carb means less inflammation)

- Enhance your gut flora with fermented food

- Removing grains that can cause intestinal permeability

- My use of supplements that I have stuck to for 23 years (I have recently though that manganese is more important than I had realised). I guess they are my medication 

- No NSAIDs ever - hard I know, but I have had pain recently and the odd headache where I have just said to myself - they will do more damage in the long run

My further recent improvements cutting out oatcakes and rye - and for breakfast I have a Waitrose / Sainsury Sheeps Milk Yogurt with Honey and generous amount of Omega Seeds (Sunflower, Pumpkin, Sesame, Linseed mix) mixed in... so delicious and keeps me full all morning because of the high protein. 

Some days I will have a banana - and a bag of Walker Light crisps - yes a strange breakfast but my nutritionalist told me there was not much wrong with this as long as I had good food later in the day.  I have also been using the new Naked raw food bars - but cut down a bit as I think they are high in sugar.

Lunch is often very low carb - with a Pret Salad with Chicken or piece of Chicken with a bag of "Steve's Leaves" - I look a bit strange sitting at my desk at work munching on handfully of rocket and watercress.

On days when I have pain - which is not often these days - I take a whole pot of Yogurt with seeds, honey and a banana and grze on that all day.

I usually have a normal meal every night - Meat and 3 veg, poatoes, Pasta with a sauce and meat, Omlette.  If my pain does continue for longer periods which is very rare - I go carb free on odd days. 

I have read online about 200 pubmed / ncbi medical papers that link autoimmune disease to either diet directly or indirectly via the balance of gut bacteria - and this is where research is now. NOT SWITCHING OFF OUR IMMUNE SYSTEMS.

It is our gut flora / bacteria that govern the immune response to other things that are in the gut - in recent years this gut flora has been called the Forgotten Organ

The No Starch Diet is important in AS but is very restrictive - my assertion is that with a healthy gut free from damage from NSAID and increased permeability from grains ensures that the culprit "klebsiella" AS bacteria stay put - most of the time

Take Care -  pm me whenever you like

Sean