Dairy can be the issue with some AS sufferers it seems or a combination of starch and dairy, specifically cows milk and cheese. A process of elimination in most cases I guess. Glad to hear he is doing well.
Andy
Thanks Danielle :)
The only specific test (not exactly specific but close enough) is a blood test to look for the HLAB27+ antigen. Only around 8% of people have this and if you do it does not mean you will suffer from AS. However, the vast majority of people who suffer from AS are HLAB27+ so doctors use this as a diagnosis. The symptoms of AS are so varied that it is often mistaken as just joint pain, a bad back or IBS or tendonitis or such like and the medical profession still does not know as much as sufferers would like. Unfortunately there is no cure for AS but knowing one is a sufferer allows you to take precautionary measures to prevent or minimize the damage this disease can do to the musculoskeletal system. One good website is www.kickas.org it has a wide range of information and is a forum for sufferers by sufferers so you will get down to earth news. I consider myself lucky compared to a lot of AS sufferers I have had only phases throughout my life often triggered by an injury and possibly stress or inactivity. I have been extremely active most of my life with physical jobs, martial arts, hill walking and a stint in the Foreign Legion, all things one wouldn’t think possible as an AS sufferer. But I also had times where pain, swelling and lethargy made things quite difficult. There seems no real rules where AS is concerned but the sooner it is confirmed the better for long term prognosis as you and your specialist can monitor your health more specifically. There is also a book written by Carol Sinclair, The IBS Low-Starch Diet ISBN 9780091912864 that is very good. She was diagnosed with IBS, worked out that starch was her nemesis then came to find out she had AS.
Feel free to contact me any time.
Regards,
Andy
I am technically retired but am still willing to help people so I don't charge - I just am grateful for a little donation.
My son has had AS for the last 20 odd years. About 6 months ago he finally agreed to follow my advice and stop taking any dairy products BUT he started using camel's milk and his symptoms have completely vanished - no pain, no swelling, no flare ups and no more medication!
James and Catherine,
It may also be of use to you for recipe ideas to check out my doctor's website. I chose him for his diet/lifestyle/holistic approach to his patient's health issues and he keeps the food section very up to date.
Here's the link: https://sites.google.com/site/drthierryhazout/diapo-recettes
Danielle
Hi Andy,
I would be interested to get tested for AS as it would potentially explain a lot of things regarding my health. Is it reasonably easy to get tested? What does it consist of?
After 2 colonoscopies, an endoscopy, biopsies, several specialist consultants, courses of Questran, useless Immodium and endless different diet combos, the professionals can still find no reason why I have to go to the toilet immediately and urgently after eating.
This has been going on for 8 years now and apart from keeping dairy free and the daily carbs down as much as possible to try to limit symptoms, I'm not really any further on.
Would love to follow a new lead rather than continue like this, feeling like there is no rhyme or reason to it!
No but I think I may well do as it would be good to be forewarned.
When he was first diagnosed he was meant to do an elimination diet - the thinking being that some things can be a trigger - but TBH I'm not sure that he ever stuck it out to the end as he got so fed up.
He is a huge foodie but eats masses of fruit and veg, not much dairy or red meat but he's 75 and is of the "I need iced buns three times a day or I might DIE from hunger" generation.
The starving yourself for a couple of days idea would fit in with the gut bacteria idea too....Interesting stuff that I will pass on. Thanks! x
Thanks Catharine. I have heard that some people with AS get great results doing a three day Apple and olive oil fast if they get a flare up. This may be something I will do to better kick start the benefits of the No Starch Diet.
Have you been tested for HLAB27+ yourself? I would suggest it as it is obviously inherited though some siblings can suffer whilst others don’t.
Give my regards to your Dad from a fellow sufferer and if he wants to know how the diet works for me please feel free to drop a line.
Hi Andy
My dad also has AS and he has found diet makes a huge difference. He finds now that he can treat flare ups quite effectively by hardly eating anything for a couple of days. He is not overweight at all but still finds this helps. x
I have an auto-immune disease called Ankylosing Sponylitis. There is still much unknown about this disease and it is often wrongly diagnosed as the symptoms can be so varied and common (joint, back pain, IBS etc.) Reaserch seems to show a high probability that starch is the main contributing factor for symptoms. Certain bacteria in the lower gut thrive on starch which is not all broken down in the digestive process. These bacteria are similar to the genetic marker HLAB27+ which most AS sufferers have. The body gets confused and not only tries to rid itself of the bacteria but also things it sees as similar.
AS can come and go over sufferers lives and some people are more stricken than others. I have been reasonably lucky and have managed to do things a lot of non-sufferers have not but am currently in the middle of a flare up. To try and prevent future flare ups and disease progression I have just started a No Starch Diet. It’s only been a few days but am already seeing the results. Not being able to eat the foods I love is hard but better than the pain, discomfort and possible permanent skeletal damage that can occur from AS. Diet is often more important than people think.
Thanks Ian :)
I buy it in bulk online, in powder form. It's around 25€ a kilo, just L-ascorbic acid and nothing else. It can be stored for ages with no issue, but as soon as you dissolve it in water you need to consume it relatively quickly, i.e. within the day. I also bought a small digital scale that allows me to be reasonably consistent in dosing from day to day.
I would like to take vit C Ian, but want to find a product which has no other additives like saccarin etc
Regarding allergies in general, has anyone tried large doses of vitamin C? It has antihistamine properties as well as antioxidant, antiviral and antibacterial, and is completely safe. There are papers published too that have shown astonishing reduction in sensitivity to allergens.
When I say large doses I'm talking about 10g daily, as a maintenance dose - i.e. far higher than the RDA that is only meant to prevent scurvy.
Interesting John. I don't have any food allergies, but on the rare occasions I have eaten factory produced meals, I had the feeling that they didn't work well with my digestive system.
We make our own bread and, cook most meals from basic ingredients and only eat out occasionally. As Mother used to say, "At least you know what's in it!"
Sounds good Sue. Is there somewhere I can see prices for hair sample testing please?
Here is a shortened version of my leaflet:
Sue Stanley is an alternative therapist who started out as a radionics* practitioner in 1986 and who now combines this with various other therapies to improve our health and well being. All the techniques used are aimed at working with the origins of illnesses rather than the symptoms.
We all have the capability to heal ourselves but most of us tend to rely on orthodox medicine and doctors to make us better.
She then became a practitioner for radionic homeopathy. She also feels that parental conditioning and other figures in authority can affect our lives, our thoughts and our health.
She works with nutrition which plays a very important role in our well being.
Other therapies include flower remedies which work on many levels.
Geopathic stress is checked out as this can be the cause of immune related conditions and is primarily a disease of location.
All testing is done using a hair sample to look for the causes of allergies and general health issues using a pendulum. This can relate to the origins of problems linked to asthma, eczema and so on.
*Radionics is a science related to energy patterns. Any distortion and disharmony can be identified and used to plan a healing process on mental, emotional and physical levels. It is done through dowsing with a pendulum. This technique was discovered by a French priest, Abbe Mermet in the early 1900's.
also allergic to most deodorants or anything with perfume in it.
White wine.
It started off with me going a bit red, then spread to being very red over the face, back, chest and arms and eventually now, leads to severe lack of breath.