Ankylosing Spondylitis Diary and Diet Research

1 - Hi Just noticed your site, whilst visiting AS assist.org. hope to see you post there now and again.
Welcome to that site and well done on this one, looks mighty good hon.
I will check in from time to time.
I love Blogs, do some more \‘how you feel today with AS\‘ blogs.
Hugs Charlotte (Charlie)x (Comment this)

2 - thanks charlotte, yes I really should stop by ASassist.org again. Have not been there in a while.. kickas.org is my home :-) (Comment this)

3 - Have made the unanimous decision to let the world in on me.
As an AS sufferer among many other complaints (Maggie is quick to remind me), with much time to spare, I figure that what I have to say on a variety of things including my AS observations may be of interest to those with nothing else to do. (Comment this)

4 - Hi Zark
Thanks for email and reading blog.
I have a complicated medical history. My condition very definitely made

worse by 10 years of self-employment.
Had to give it up and give it away 2years ago. Now i do nothing except

worry about my sad lot. But, I want to get on top of my life again and

not be ruled by illness. So filling in time productively is a key aim.
Hence the blogging. I will never work again within a normal

environment but not worried by that. My wife earns good money and is

happy to carry on for a while. I‘m 57.
Replying to your questions :-
- no fusion as far as i‘m aware
- HLA B27 confirmed 1995, although suspected 20 years previously but

not tested.
- have had a first bout of iritis end 2004 in left eye.
- Low back and neck pain. latter is worsening. Get pain in both heels

when walking most times. have flat feet anyawy. Also, getting more

pain in left knee. put this down to effects of poor gait over 30

years.
- had 3 GI bleeds over the years. having gut/bowel discomfort and no

appetite, occassionally nauseas. Now off diclofenac and losec and on

arcoxia for last 3m. I‘m less stiff and get more mobility whilst doing

pool exercises. But BP is on high side so am watching that as well.

I have kept a 3m diary of food and bowel activities. Not conclusive

really. Stopped all wheat/gluten and dairy foods. Found home made

bread does make feel worse. i now eat cheap tesco white rolls. only

take soya milk as i like it better.
Last month i started taking colostrum with my cereal every morning.

Feeling less discomforta and bowel more settled. Early days yet. If

you are unfamiliar with this product go to www.colostrum-uk.com

I attach the following for yr info :-

MEDICAL HISTORY – MICHAEL R HARDY

DOB – 24 June 1948



1970 – Hereford General Hospital, Hereford
Flare-up of R knee and ankle with lower backache. No conclusive

diagnosis but possible first symptoms of Ankylosing Spondylitis was

discussed.

1973 – Frenchay Hospital, Bristol
Removal of benign spinal meningioma in mid-dorsal location.

Late 70’s throughout 1980 – My rehabilitation took 18m or so. During

this period of 15 years, continued to experience pains in the lower

spine and right hip along with gait difficulties. Consultations, blood

tests, x-rays confirmed degeneration of the SI joints and lower spine.

Spent time in the Wolfson Rehab. Unit at the Atkinson’s Morely

Hospital, Wimbledon under the care of Dr. David Jenkins, Consultant in

Rheumatology & Rehabilitation (rtd) who confirmed my AS. He treated me

a number of times with rehab. and joint injections.
Also experienced a couple of sessions of cellulitis in right leg/ankle

and treated with anti-biotics.

1994 – William Harvey Hospital, Ashford, Kent
GI bleed, MRI scan, barium exam confirmed duodenal ulcerations. I

stopped taking ketoprofen (since 1973) and started with arthrotec.

1997 – Unsted Park Spinal Rehab Unit, Guildford
Under the care of Dr. Jenkins, 2 weeks of general tests and mobility

tests for AS along with an exercise regime. Confirmation of the

HLA-B27 gene. Diagnosed with hypertension. Initially this was

controlled with exercise/diet. Today (Feb 05), I need to take drugs

for this as well.

1998 – William Harvey Hospital, Ashford, Kent
GI bleed (minor). Follow-up endoscopy confirmation. I had a

consultation with the gastro entomologist who took me off arthrotec

and onto diclofenac and losec.

1999 – Consultant Rheumatologist, SE Kent Hospitals – Dr. P Bull.

Further blood tests and x-rays confirms the progression of AS. Came

off NSAID’s to trail various COX2 inhibitor drugs, which were found to

be ineffective for me.

2002 – to date (Feb 05) – Moved to York. Under Dr. Iveson

(Rheumatologist) and Dr Kelly (Gastro entomologist). Continue with

pain in lower spine and right hip. Begin to experience stiffness/pain

in my neck Increased mobility problems. Onstart of stomach/bowel

discomfort. General loss of appetite, tiredness and nauseas at times

with frequent diarrhoea followed by constipation.

Jan & Feb 05, had a sigmoidoscopy and currently awaiting results of a

barium scan of lower bowel. In Nov 04 I had iritis in my left eye (1st

occurrence). I have regular chiropody sessions and recently seen an

osteopath. I attend pool sessions twice weekly.

Mar 05 to date - Nothing irregular found in bowel. Await consultation

to discuss medication/diet issues.
Visited Dr Fraser (Consultant Rheumatologist) in Leeds for a second

opinion and to discuss alternative medicaton. He has put me on Arcoxia

for 3m trial. My BP is raised at 185/80 so will need regular checks.
Also had a referral from current reumatologist to see the consultant
haematologist. This is to do with raised proteins found during routine

bloods and urine. I‘ve been tested for the Bence Jones protein and was

negative. But the white blood cells need to be checked to eliminate

myeloma which can only be done via a bone marrow check. As raised

protein can be also be caused by inflammatory conditions, I‘ve decided

to monitor bloods again in 6m time. If protein still present then I‘ll

undergo a bone marrow test as an elimination process.(if myeloma is

present- find a Lugar!)

Cheers - Mike H
----- Original Message -----
From: zarkme
To: mike_999@tiscali.co.uk
Sent: Monday, May 16, 2005 6:28 AM
Subject: [Venerable Journal] 5/16/2005 06:28:10 AM


Hello, this is ‘zark‘ just stopped by to read what you had to say about AS.. I want to know more about your life with AS :-). Do you have any fusion, are you HLA B27+, do you get any eye pain, hand/knee/foot pain, etc..

By the way I have a second blog which you probably heve not seen ..
http://zarkme.blog.com/

--
Posted by zarkme to Venerable Journal at 5/16/2005 06:28:10 AM


--------------------------------------------------------------------------------


No virus found in this incoming message.
Checked by AVG Anti-Virus.
Version: 7.0.308 / Virus Database: 266.11.10 - Release Date: 13/05/2005 (Comment this)

5 - Hi mike :-), heaps of info there..



The very best recommendation I could give you is to eat nothing but pears and grapes for 3 days, and see how you feel. You should feel almost no inflammation after that, after this point I would recommend adding back one food a day and then see how you feel at the end of the day. And most importantly : make certain you write results down in an index so that years later you will be able to look back and see how each food effects you. (Comment this)

6 - Hope for arthritis patients -

Some really interesting research is going on in australia regarding how MIF interacts with the immune system of people with arthritis. Some good abstracts and quotes are available here: http://www.kickas.org/ubbthreads/showflat.php?Cat=0&Number=208996


quoted from : http://www.news.com.au/story/0,10117,16344540-28793,00.html

"AUSTRALIAN researchers have identified a new means to reduce the inflammation of arthritis, suggesting that a drug may be on the market within four years.

The researchers had linked a protein commonly known as MIF with the inflammation associated with arthritis, Monash University associate professor of medicine Eric Morand said as he presented the team's findings to the seventh World Conference on Inflammation in Melbourne today.
"We believe we have identified MIF blocking as a way to reduce the need for steroids, and secondly, we believe we have found a way to block MIF by making a drug type compound into a human treatment," Dr Morand said." (Comment this)

7 - i was doing a search and found this interesting site.im a 36 yr old guy diagnosed with AS few years ago altho i started suffering from AS since i was 19.like all of you,i have good days and bad days.i have sometimes severe lower back pain,my spine has started to deform,my neck has limited mobility and my ribcage has fused together(making sneezing quite painful). I have noticed a big difference by cutting out dairy and red meats...thopse 2 seem to be the 2 biggest thiefs altho there might be some foods i havent taken into concideration as of yet.ty for this helpful site. (Comment this)

8 -
Nice forum for fellow AS sufferers.
Something we really need as interacting with the MDs seams to prove unsatisfactory.

I'm a member of an HLA b27 family. Father and two sisters with serious arthritis. I've had bacterial and then chronic prostatitis (Reiters syndrome) and now the backbone is swollen as in AS.

While on antibiotics for prostatitis I became very sick and improved dramatically when I began taking antifungals for a fungal skin and toenail infection. I expect systemic Candida was what was really being treated. Clearly gut integrity is important for my condition.

Later while taking NSAIDs the symptoms of systemic Candida returned (also strange painful head sores came that went away with the antifungals) . I began the antifungals again and also found that some foods would give me massive headaches and basic chemical pain very rapidly after eating. I began a rotation diet plan as suggested in the Candida books and discovered what can give me problems. Since my gut was severely damaged by the NSAIDS my reactions to the wrong foods was dramatic and rapid. I believe I was able to discover more easily than most AS patients what my problem foods were.

It took me three months of sever pain and many difficult reactions to get all of the foods categorized and by then the gut was healing and I also knew what to avoid. At the beginning of this time I could eat all nuts with no problem. 40 grams of hazel, brazil, almonds etc were fine. By the end of the two months any of the nuts would cause massive immediate headaches that would last three or four days and very bad blood chemistry problems. I was a big eater of soy, wheat and milk before the NSAID damage and they were bad foods from the start. I rotated through the other grains and seeds and also gradually lost the ability to eat most of them. I could still eat quinoa and amaranth at the end but I believe they would have become problematic if I would have continued to expose myself to them with a bad (leaky) gut. Most fruits and vegetables were no problem.

At the end of the three months the list of problem foods included all of the plant foods with significant protein. All grains, seeds, legumes (beans, peas) and nuts. I could still eat pumpkin and sunflower seeds and pine nuts but I expect I would have become allergic to them with more exposure. I now eat any plant protein rich food only if I take some cromolyn.

I expect this food list may benefit other AS and food intolerant (allergy) people. Essentially the problems foods are those plant proteins you have been eating allot. With a healthy gut just switching to other foods may work for quite some time. With a really leaky gut I could become sensitized to a plant protein rich food in just three or four weeks eating it once a week.

I expect that I was having a true immunological reaction. The allergist only allows the word food allergy to be used with IGE mediated reactions but I think this is an inappropriate restriction on the word. We should be allowed and happy to talk about our food allergies even if the allergist can't detect them with a skin prick or ELISA test. The antigens you are exposed to from food may not be the same as the proteins they use in the ELISA and skin prick tests. The food proteins go through your stomach acid and then are chewed up by proteases before your blood gets to look at them. They have this figured out for celiac and gluten but not yet for the other food antigens. Unfortunately if the doctor can't do an accurate lab test for it, he has a hard time believing it's real.

Eating milk or whey (casein) caused terrible nocturea (peeing 6 times in one night). I think the kidneys are used to get rid of some of the chemicals from the immune response to the antigenic foods. I also tried lactose alone and had gas problems even though most of my life I've enjoyed lots of milk. I think the NSAIDs, food allergies and Candida have just caused too much damage to my gut's lactase abilities.

Some of my responses to the wrong foods are...

1. Sneezing from the histamine released from the immune response in the gut. (I use claritin in the day if I sneeze and diphenhydramine at night, it also helps me with sleep)

2. Red face

3. Nocturea (peeing at night)

4. Headache

5. Itchy feeling on roof of mouth

6. Just really bad chemistry feelings

7. Sleep, The free radicals from the immune response made sleep nearly impossible. I felt like there is an angry chemical storm that I'd rather not be around to watch but going to sleep just doesn't happen. The mechanism I imagine is that the radicals oxidize my melatonin too fast to allow sleep. Even supplemental melatonin has little effect. There is just too much fire to be quenched with a small 3 mg of antioxidant. It's like throwing an ice cube on a forest fire. My answer was 6 grams of vitamin C / day to calm the firestorm. Then I would take 3 mg of time released melatonin and it would have an effect. I've recently gone to 1mg, the three mg was making me sleep too fast (I'd wake up at three feeling fine and ready to go) and giving me some strange feelings.

8. Some longer term responses to the wrong foods.
The brain goes south (brain fog, memory loss, inability to concentrate).
With too much exposure to the wrong foods I began to have kidney and liver problems with pain in those organs. Something called circulating immune complexes (CIC) gum up the kidneys and liver. Lupus and Celiac patents have these problems also.

Although I'm not able to experience most of these symptoms now that my gut is mainly healed and I'm treating it well, I think these foods can still be a problem and I can feel an AS response from eating them. It's just more difficult to sort out with a longer response time. I can also trigger my back or prostate inflammation by eating some archadonic acid (ie not trimming the pig fat) or by not eating enough EPA.

Another chemical that I think has helped me is an old prescription drug called cromolyn (not chromium). It is commonly use up your nose for airborne allergens but it can also be eaten to calm the histamine reaction in the gut. It's apparently very safe I've noticed no side effects. I got it by educating a doctor and having him call

Clark's pharmacy. 1-800-480-3432.
15615 Bel-Red Road, Belleview, WA, 98008.

My protein sources are fish, meat and eggs. I believe these are less antigenic because they are proteins more like me than the plant proteins. I only eat eggs from chickens that have been eating omega three fats (flax) this is the trick to making them a good food.

Body fat encourages the inflammatory response. I've gone from 215 to 170 pounds and it has helped. The Barry Sears Zone books are good to learn about the omega 3 fats and the dangers of arachidonic acid and fast carbs. I disagree with him on the very low intake of GLA. I have used GLA (evening primrose and borage oil) to help make the PGE1 that is needed for the gut. NSAID use restricts the production of PGE1 as well as PGE2. I now know I can't take NSAIDs and I take some GLA just to make sure my gut stays healthy. Another problem I've had with the Zone suggestions is the recommendation to eat lots of protein if that protein is of the type that I'm allergic to. I started to use allot of soy and soy and rice protein before I knew about my allergic responses. But most of the Sears ideas work out for me. No fast carbs, no trans fats, more protein (but from lean meat, salmon and eggs not plants) and supplement with high EPA fish oil (several grams/day) and some GLA.

The life extension site has a nice dialog on inflammation.
http://www.lef.org/protocols/prtcl-146a.shtml

I've had a remarkable stable gut until all of this. Now constipation can be a problem. I think it happens when I take the antifungals and when I eat the GLA. Both necessary for their own cause but everything needs to be balanced. Fiber has no effect. Three to eight grams of vitamin C / day works for me. I use calcium ascorbate to avoid the acid problem and take some magnesium citrate at night to balance the calcium and to keep my pee from being too acidic. (I've also had IC, interstitial cystitis problems) Also the calcium of the calcium ascorbate makes up for the fact that I can't drink milk anymore.

I expect the effect of starches on many AS patients is a result of either the high glycemic index or the fact that they often occur in grains that have the allergenic plant proteins in them. Sugar would be just as bad at encouraging the production of arachadonuc acid and the plant proteins by themselves can be a part of the problem. While I had the very leaky gut I tried many available protein sources. Rice, soy and gluten proteins, they all eventually gave a quick very bad response. Whey protein was a little less definitive but I would pee allot that night.

Recently I've noticed another effect of starches. If I eat them while not completely solubilized they can give me an itchy mouth. My recipe for pancakes without flour is 1/3 cup Tapioca starch, two high EPA eggs, blended with a hand blender, then hand stir to add ¼ cup olive oil premixed with 1 tsp of baking powder. Note there is no water in this recipe. This fries up to a nice pancake but as you increase the tapioca starch the pancakes will start to make my mouth itchy when I eat them. Has anyone else seen this, that too dry a starch will make an itchy mouth?

-Arnold


 (Comment this)

9 - >> I expect the effect of starches on many AS patients is a result of either the high glycemic
>> index or the fact that they often occur in grains that have the allergenic plant proteins in
>> them.

one or two people on kickas.org have had a similar theory. However it is the starch theory that has stood the test of time for us. It is the one food that everyone on the NSD forum of www.kickas.org reacts to. Starch sends our ankylosing spondylitis crazy. The currently theory (called 'Molecular Mimicry') that fits our observations goes like this:
* starch is consumed
* starch is only partially digested
* undigested starch feeds weed microbes in gut (eg. klebsiella, chlamydia, etc.)
* unfriendly microbes reproduce like crazy
* immune system tries to clean up the weed organisms. Unfortunately certain microbes such as Klebsiella pn. have antigens that are very similar to those of people with HLAB27 gene.
* immune system is instructed to destroy everything that looks like the weed organism : and unfortunately that includes our connective tissue.

It is just a theory, but it fits our observations nicely.

== Two sites that I thoroughly recommend are: ==

* Go have a look at the NSD forum at the link below (if you haven't already). These folk have lots of experience with treating AS by using dietary measures similar to what you have described. They would love to hear of your experience and will appreciate the analytical approach you have taken to manage your health.
http://www.kickas.org/

* This is another blog of mine but with a different focus. This one focuses on summarising my experiences with the No Starch Diet.. and lists exactly which foods worsen my spondylitis to worsen and which ones are safe
http://zarkme.blog.com/ (Comment this)

10 - I have been taking probiotic for about three months and my ankylosing spondylitis has significantly improved. My back pain has virtually diappeared and I have regained most of my flexibility. I am unusual in that I did not contract AK until I was in my 50s after a bout of Lyme disease. I now wonder if the massive doses of antibiotics I took fort the Lyme disease killed so much of the good bacteria that my immune system was affected and caused the AK. (Comment this)

11 - == probiotics help AS? ==
Hi gus, thanks for sharing that! Good to hear that things have improved for you.

Given all the research that I have read about probiotics I am sure they can improve both the gut health and the health of our immune systems. (Comment this)

12 - Hi,

I am about to start the no starch diet however I am already underweight due to the pain food has been causing me as my doctor suspects Inflammatory Bowel Disease.

I am very concerned that I will not be able to regain my weight or worse still I will continue to lose weight on the NSD.

Has anyone had any similar experiences and if so were you able to regain weight on this diet?

Thanks,

Louise (Comment this)

13 - Louise , Hi Louise,

I lost weight at the NSD beginning, affected also with some fasting I did and a 3 day apple diet.
I actually was thin as I've never been before, and people started to ask questions. I was'nt too worried, and graduately started consuming fats, especially from olive iol, fish oil, and my personal close buddy, Tahini ("tehinna", where I come from). I gained my small belly back, in a matter of weeks.
I believe that keeping your mind on compencating the loss of starch with oils, from the beginning of your diet, may be very helpful.
BTW, the diet does work. don't lose your patience and listen to your body.
:)) (Comment this)

14 - Hi Louise, tell me how you go. If you have any questions or need help the very best place to go is the NSD forum at kickas.org as you will get heaps of help there and a quicker response.. I have added the link to the forum below:

# Recipes and important links (NSD Forum)
http://www.kickas.org/ubbthreads/showflat.php?Cat=0&Number=19156

 (Comment this)

15 - Hi Zark,

My husband has suffered from AS for the last 10 years. His joint pains, which were once debilitating, have fortunately almost completely gone. Recently, however, he has been suffering from iritis and is currently on prednisone. I have been reading about the benefits of rutin and most people advise to use rutin sourced from buckwheat. Here\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\'s the problem: most brands do not state the source of rutin. Can you recommend a brand to use?
Many thanks, Claire (Comment this)

16 - Hi Claire, My guess is that all the products you see in the shops source their Rutin from buckwheat. If you wish to check then just call the manufacturer / distributer of the product that you find in the shops.

I have a list of the foods which cause my iritis here:
http://zarkas.blog.com/AS+Related+Health+Problems/

The main culprits for my iritis were: wheat, milk, and mixtures of fat and sugar (eg: ice cream, chocolate, etc) (Comment this)

17 - Hi Zark - it seems inconsistent that although you suspect you have a yeast intolerence, that you eat grapes. Did you know that aside from mushrooms, grapes have the next highest level of yeast found on the skin?

Yeast certainly inflames my AS as one day my husband hand fed me a grape and within 5mins I had little black inflammation dots (otherwise known as floaties) in front of my vision which is symptomatic of my Iritus flareups.

And the Rheumatologists just regurg the same old bucket of bile to me that " it is very hard to clinically prove the food, diet, meditation or Tai Chi has an impact on AS remission". Consquently, I have gone through 4 Rheumatologists and I'm never seeing one again ! I now self manage me more effectively and I am the most healthiest I have been in years. Spirit + Exercise+Diet=Remission. Many fellow suffers are so maxed out on NSAIDS that they are numbed to the point of dispair. Why aren't the Rheumatologists able to take off their conservative blinkers and look outside the square at the wonderful achievements of people like us experience when we walk the road less travelled ? (Comment this)

18 - Awesome! (Comment this)