New to AS

[nh_user_507243]

Hi All, I am a newbie to AS.

I was diagnosed a few weeks back based upon a positive B27 gene and sacroilliac and Thoracic inflamation. I originaly went to my Doctor for a bad viral infection but now I am AS.

The fatigue is hitting me pretty hard. I attempted to go to my works Christmas party at the weekend and ended nearly asleep in the corner of a club. Before you say it, it was not the Alcohol

I am looking for some advice on a few things:

1) I also have Hemolytic Anemia. This was detected at the same time I went for the viral infection. Has anybody else had hemolytic anemia diagnosed with AS?

2) During testing, the doctors discovered auto antibodies for SP100 (mainly associated with Billary Cirrohsis), however I had no evidence for liver disease. Anybody had exp with this?

3) Has anyone had any luck with Allergy testing and nutrional therapy for inflammation reduction?

Thanks

T

 

[nh_user_47284]

Try Vitamin D spray - D-lux was prescribed by my consultant.  Now also available in chemists, not just online!

[nh_user_48766]

Hi Tim

My story is long so I will summarise in bullets -

- joint pains in neck, back, hip, shoulders, headaches, tiredness age 17

- my Dad has AS with fused sternum, back, neck, hip replacements (drugs made him worse and screwed up his guts)

- mother took me to private doctor (Dr. J Mansfield) when I was about 19 was put on a trial for dietary therapy (elimination diet). It helped but I personally did not commit to it!

- went gradually down hill until age 26, gradually stiffer neck, sore hips, limp - but tried to keep fit with exercise and fought it.  Ribs and sternum and shoulder blade the most trouble for me - very sore at times.  I used to come from work and sleep!

- then at age 26 my wife heard of a naturopath / dietician that had treated her friend for extreme ME (this was serious could not move a muscle ME) - I already knew that diet had a bearing on my condition and was ready to commit

- Naturopath said (for me) No Wheat, Corn or beverages that contains these, she also said no cows milk.  She gave me quite high doses of Magnesium, Manganese, Zinc, Selenium and some Calcium.

- I committed for about 1 year and I felt amazing - I started long distance running then started being lay but very soon realised that a single pint of Guiness could make my hip sore for at least a week

- then the shocker - diet alone with my supplements of minerals worked well for about 3 years, but started to get new pains. I HAD BECOME ALLERGIC TO RYE BREAD AS WELL, so I stuck to oat cakes and these kept me sustained for breakfast for at least another 7 years.  No wheat or corn ever, not even sauces. My tipple is cider and wine.  Today I have had to give up oats too

- At 30 - I ran a few half marathons and felt great and started to really study online about food allergies and AS. I found the kickas web site - which was set up in relation to research by Dr. Ebringer in to AS and how the body creates antibodies to self due to a process called molecular mimicry, due to gut bacteria called Klebsiella.

-  I had a new weapon in my armoury against AS - the low / no starch diet.  I cannot stress how important this is to try for flares.  But I go beyond Ebringer in that my belief is that gliadin proteins in wheat (and phaps similar proteins in other grains) make the gut permeable (see research online from Allesso Fasano) - so even low starch gluten based foods like lager, beer, Guiness are crucial for me to avoid.

- So here I am at 48 - no drugs since age 26, not 100% cured but at least 75% better.  I would recommend an elimination diet, I would recommend to cut out gluten (not because everyone else is doing it - but because there is now clear medical research that it causes leaky gut in everyone not just celiac disease).  I could also recommend looking at one of the popular healing diets such as Paleo, SCD, GAPS as these are all aimed at improving gastro-intestinal health.

- I don't even take ibuprofen for anything, not even a migraine - my gut health is sacrosanct. I have detected back flare ups the day after taking ibuprofen 

Commit for 1 to 2 months - and you will know soon if it helps you.  If it doesn't help you you have lost nothing.  To my mind it is better than trying to switch off your immune system and running the gauntlet of drugs.

I have read about 200 related online medical studies in to dietary proteins and sub-clinical bacterial infection in disease - and it's not just AS, there are huge indications that RA and other autoimmune diseases (and even non-autoimmune) can be helped by removing the antigens (dietary or bacterial).  MS - Epstein Barr Virus, RA - Proteus Mirabilis & Mycoplasma 

I'm happy to answer any questions or pass on links to medical studies.

look at Kickas

[nh_user_48766]

Hi Tim

I also found a medical article regarding Billary Cirrohsis - called

"Gut-liver axis: an immune link between celiac disease and primary biliary cirrhosis."

I am not saying that everyone has celiac disease - but it just to demonstrate that there is more to dietary intevention and the reaction to our bodies to some proteins.

There is also the developing understanding of "non Celiac Gluten Sensitivity" - which I am sure uncover other links between disease and diet.

Food protein reactions (other than gliadin in wheat) are poorly studied.

[nh_user_507243]

Thanks for this. Sorry for the late reply

I am now dairy, wheat, Gluten, Beef and Peanut free

I ordered a lab kit and sent a sample to a lab to test my IgG reactions to different foods. Interestingly I showed reactions to 22 different foods.

I have loaded my body with multi vits, Oregano oil, non dairy probiotics, magnesium.

At the moment I am free of pain killers or any DMARDs

My docs are a bit lazy. They havent even sent me the stronger NSAIDs they promissed. I have found the best way is to tackle this myself. The diet and supplements are a good start.

[nh_user_48766]

Hi Tim

Are you noticing any pain / stiffness differences - 22 reactions (out of interest what major foods?) that is incredible ! Are they things that you eat regularly?  You must have done some homework with the oregano oil.. I have also read in studies that grapefruit seed extract and guava extract also have antibacterial activity against Klebsiella bacteria (implicated in AS)

Some old medical papers I found online (New England Journal of Medicine) was by a doctor called Dr. John Turnbull show that delayed anaphylaxis to food proteins as a cause of arthritis were identified in 1924 - he published 2 big studies with over 100 arthritis sufferers being assessed and improving greatly after restricting foods that he has tested using cutaneous allergy testing... 1924!  

I avoid corn too - as it is a major cross reactor along with cow dairy to gluten.  The protein in corn called zein (like gliadin in wheat) has amino acid sequences that can be recognised by cross reacting anti-gliadin antibodies.  There are medical studies on ncbi that report this.  When I have corn I get headaches and a runny nose - when I eat wheat (by accident) I get nose bleeds too then my arthrtis flares up. Cows milk gives me eczema and also flaky sore eyes / blepharitis - years of trial and error.

Please keep us updated... All our stories are so important - I call it "crowd sourcing" an alternative... The snowball is rolling and and gaining momentum.

btw - NSAIDs really are a true double edge sword - they are temporary gain, but nearly all will leave you with a gut response that can allow leakage of proteins in to the bloodstream.  I don't need meds for my arthritis anymore - but now even if I get a headache or migraine (rarely and usually self induced) I bare the pain then sleep it off.

 

[nh_user_507243]

Hey

I have noticed a dramatic reduction in waking pain. Previously I would wake at 3am with crippling pain and spasms and could not sleep again. Diazepam, NSAIDs or paratecamol were not touching the pain. I was dosing up to 800mg ibuprofen in a single dose 6 times a day and still the pain would be harsh.

Since emlinanting the foods I have not touched any drugs. I pop a baby asprin in the morning as a blood thinner. I started getting really cold hands and feet and sometimes superficial vein thrombosis in my hands which were painful. This has all gone now.

The foods I tested reactionary are: Beef, Wheat, Gluten, Dairy, Tuna, Peanut, Yeast, crusteacea, Coffee.... There are 12 others I tested borderline which are things like egg, corn etc

I purchased the oral canesten anti yeast from the pharmacy. I took 3 single dose tabs over three days and then added oregano as a maintenace therapy.

I would like to drop starch foods so that i could try the klebsiela elination theory. However I am struggling to find foods I like and can cook easy.

What did help was an Osteopath. After he got in between the vertebrae and released old synovial fluid I felt instant relief.

I felt a flare of my SI joints coming a few weeks back and it went as quickly as it came. I am now feeling mostly pain free except for some stiffness first thing in the morning. I now need to tackle my Auto immune hemolytic anemia. My hemoglobin is normal but my bilirubin and reticulocytes are high which means my body is compensating for the premature destruction of RBC.

When it rains it pours

Are you fully controlled now?

Take care

Tim

[nh_user_48766]

So glad to hear of your improvements - I had a response PM from a chap a few years ago on the Arthritis Research forum who also felt huge relief in 2 weeks!

I might be lucky but I have not needed to drop all starch foods - my thoughts are that as long as the gut barrier is in tact then klebsiella in the gut will be less of a problem.  Perhaps avoiding NSAID's for so long and never having taken the stronger ones early in my disease has given me that benefit.  My father developed a serious ulcer then anemia from various drugs - so I was put off and took my own course.

I am in control - that is not to say I am 100% cured, but I would describe it as at least 75% better for 95% of the time.  I have occassional small flares perhaps 2 a year - and I have used a no / v low starch approach to overcome them. 

About a year ago I discovered L-Glutamine for gut barrier health and if I get pain - I take a glass of dilute juice and a teaspoon of L-Glutamine.

So I might be even better if I was 100% starch free - however I do not buy in to the starch thing as a 100% cure anyway - and other food and bacterial proteins apart from kleb are implicated in autoimmune disease including AS.  There is an interesting medical paper online about the revlevence of anti-gliadin antibodies in AS. 

As for foods - I tend to cook a lot and use rice flour - I have just had a homemade pizza with about 80g rice flour, 1 egg, water, tomato puree, cheese, a few mushrooms, oregano and garlic oil. 10 minutes and yum!  When in the office I go to supermarket and have a piece of chicken with a bag of salad leaves.  I have started also enjoying Naked Bar made with nuts and fruit as a breakfast.  I also allow kallo rice puffs with almond milk for breakfast - great with a banana.   

Before I was at my worse and started experimenting - I was often on the floor in agony and used to ask my son and wife to stand on my back (shoulder balde areas) as it felt like I was developing a hump... I limped with very sore hips each time I had guinessor beer, had 3 week flare from a naughty cream tea scone about 20 years ago... so now I have wine, cider, brandy, g+t... you adapt... not really a compromise .   I make my own cakes and bread.

Rice unlike other grains carries it's lectins in the kernal - therefore white rice is better tolerated than brown rice for some people.

[nh_user_48766]

Quick question for you Tim... what lab test did you have I have been considering one for many years.

I already know that Corn, Wheat and cow dairy can do me in... but have suspected beef also for a while now.  perhaps it the grain fed aspect... be great to see if anyone reacted differently to grass fed beef.

[nh_user_507243]

I purchased the kit from York Laboratories in the UK. Expensive at 300 pounds but informative