Remission May/June 2014

I have stopped reacting to starch lately. I had noticed about a month ago that I didn't react to some starchy food that I ate whilst in Fiji (I was hungry, and it looked sooo good). My excuse is that I was eating starch for science - to test myself and see whether I was still sensitive. Quite a valid excuse if you ask me :)

Now this happened again yesterday - we were doing a wine tour around Canberra and the pizza everyone was having for lunch looked really good. I told my fiancé I was going to try some "for science" ;) Well now, the pizza was particularly good and I didn't stop at one slice as planned. I think I ended up eating about 4 slices of pizza all up.

Within an hour or two we noticed my body temperature had improved due to starch fuelling the furnaces of my metabolism (it is much colder than I am accustomed to in Canberra at the moment). Also the wine didn't make me feel like I had been poisoned, as is often the case. Roughly 8 hours later I messaged her that the only negative thing I had noticed was a bit of mild stiffness in my ribs and neck, but no pain. The next morning I was in no noticeable pain nor increased stiffness from Ankylosing Spondylitis at all and had only very mild proctitis.. less proctitis than usual I would say. That was not expected.

Normally if I eat starch then the inevitable reaction is about 99% guaranteed. The only exception is that after long periods of very careful starch restriction the immune system becomes less reactive to the usual mal-fermentation of amylose starch. But this is only for the first time you eat starch as at that time it primes the immune system. After this initial priming, the next reaction to starch will be the usual strong inflammatory reaction.

There are three main things that I am taking regularly that could be the cause of my remission in starch sensitivity:

• Natto - I initially didn't think it was this as I only just started eating Natto in June, however I had evidence of remission going back to May and even perhaps February of this year. The remission in May would have been due to taking Lufenuron and Mountain Pepper at that time. I stopped taking Natto for a few days, perhaps a week, as soybean gives me eczema. Well, I ate some hummus and went in to full AS inflammation. So I started taking the Natto again and the inflammation was gone in 24 hours.  
• Lufenuron - Quite likely to be this. This is an anti fungal. I take 2.8g twice a day and use it for a week or two at a time. This is the only thing that I can think of that explains all periods of remission this year. I started taking this on 6th February this year and soon noticed a reduced reaction to starch (15th Feb = 20140215). 
• Mountain Pepper - Maybe. This contains Polygodial which is also an anti fungal. These days I take about half a teaspoon first thing in the morning on an empty tummy and chase it with a glass of juice (with 1 tsp ACV in the juice). I do this to fix my proctitis and sinus issues, and it seems to benefit my prostate too (my prostatitis seems to follow after proctitis by about 10-14 hours). I started taking this in early May this year, so it can't explain my apparent remission in February.
• Apple Cider Vinegar (ACV) - 1 tsp once or twice a day mixed with juice. I take this to fix prostate problems and as a general tonic. I have used ACV off and on in the past and have noticed it being helpful but only temporarily and certainly not to the point that I could eat pizza without pain. So for that reason I find it implausible. Still, it may be assisting, and I am using it regularly..

Some recommended reading:

• An article from Dr Mercola:Gut Bacteria and Fat Cells May Interact to Produce “Perfect Storm” of Inflammation That Promotes Diabetes and Other Chronic Disease http://articles.mercola.com/sites/articles/archive/2014/06/05/chronic-inflammation.aspx
• HOW TO CURE SIBO, Small Intestinal Bowel Overgrowth http://drbganimalpharm.blogspot.ca/2013/12/how-to-cure-sibo-small-intestinal-bowel.html

Here are my personal notes from my phone. Sorry but they are pretty long!

----//----


NSD : Remission
Key: Ankylosing Spondylitis.

-- Notes --
Things that may have caused remission:
* Lufenuron - very likely. 2.8g twice a day with fatty food. Only thing that fits all periods of remission this year.
* Mountain pepper - maybe. Third of tsp with water twice a day
* ACV - probably not. Teaspoon with juice on empty tummy in morning.
* Natto seems less likely as it can't explain May.

--/--
20140615 : no reaction to pizza
1.30pm : Ate several slices of pizza
9pm : Mild neck and rib stiffness. No pain.
20140616 : continued ..
7am : still no AS pain. Ribs are back to normal. Neck is back to normal. Very mild Proctitis. No apparent worsening of eczema.
I did try some Natto last week but that doesn't explain the lack of reaction in May 2014
--/--
20140612 : no reactions
No reaction to tea with burnt rice AND Natto.
Likely cause: Lufenuron, Mountain Pepper (Polygodial)
* current supplementation: mountain pepper third of teaspoon mountain pepper 2 or 3 times a day. Fish oil 3-6g a day.  Before this regime I was previously using Lufenuron
--/--
20140513 : no reaction, Polygodial
* current supplementation: mountain pepper third of teaspoon mountain pepper 2 or 3 times a day. Before this regime I was previously using Lufenuron
* see Log:Polygodial & Log:Lufenuron
Ate quite a starchy indian curry yesterday whilst eating out. My partner told me it definitely had besan flour in it to thicken it up, and it reacted immediately to iodine. Decided to try it anyway, "for science!" Hehe. It was just tooo yummy to turn down?
About an hour or two later I started to get very very tired which is a classic symptom for me when eating starch .. But the painful inflammation never came! Looks like the anti fungal compounds I have been taking are keeping this disease at bay!?!

-------=:: older notes ::=------- 

Below we have my older notes from earlier in the year when I had another period of remission. At that point I had suspected Mussaman curry, which now looks unlikely to be the reason. Also of note was that the previous period of remission was NOT permanent.. it lasted about 11 days. I would say I hadn't taken enough Lufenuron at this point to 'finish the job'.

-- 20140215-17:possible remission --
Sometime around Friday or Saturday I started to notice I hadn't been reacting to restaurant food for quite a while. So I tried a small piece of a potato chip on Saturday at lunchtime... No reaction. I very often have trouble with restaurant food since the ingredients are out of my control. Now, when I talk of a remission in symptoms I am only talking here about inflammation from Ankylosing spondylitis, and this inflammation comes back in force whenever I eat even a small amount of starch.

Sunday night I was with friends and decided to try something more dangerous - some glutinous rice dumplings that also contained the added amylose starch which I react to. I ate four of them, and I definitely should have reacted. I had a modest increase in stiffness. It wasn't really painful just a tad stiff, and the next morning I was fine again! No pain in my back, ribs, hips or neck. Perhaps some minor skin issues (but maybe that was from chocolate / dairy). This is unheard of for me. I should have been in quite significant pain for at least 3 days.

What's changed? What helped? :
1. Lots of Massaman curry - almost daily (most likely what helped)
2. Lufenuron treatment (9grams, split over several days)
3. Lots of fresh air (very unlikely)

Massaman curry
Why? Well I had noticed in late December 2013 after eating some curry at the local Indian restaurant (Mantra) that I didn't suffer from the usual dehydration .. dry mouth, eyes, nose and skin that plague me most nights. This problem also causes me significant fatigue, and it has troubled me on and off for many many years.

Now I tried making my own Thai curry and found that it worked equally well (that was in early Jan 2014). I was of course using my new friend - Massaman curry paste. I would eat it and on the very same night the dehydration would go away. The following night if I ate with friends and didn't eat this curry my symptoms would return very noticeably. The following day I would resume eating this and the symptoms would go away again. This would occur again and again over the coming weeks with a pattern that was absolutely reliable.

So since this curry definitely helped one immune related symptom, I think it likely that it healed the root cause of several health problems, and that likely cause is: leaky gut syndrome.

Ingredients of curry paste:
The ingredients are: chilli, lemongrass, garlic, shallot, salt, galangal, fish paste, coriander seed, cumin, kaffir lime peel, mace, cardamom, cinnamon
I would put my money on the spices that I don't use frequently: coriander seed, cumin, kaffir lime peel, mace, cardamom, or galangal

Update 1:
Oh one more thing - I usually made the curry in my pressure cooker with bones, carrots, onions, pumpkin .. And quite a bit of curry paste


Update 2 - 20140221
It is taking more and more Massaman curry to have the same effect on my symptoms of dehydration, and it isn't lasting as long. Oh well, this happens fairly often unfortunately - these things sometimes only help temporarily. What I've noticed is that it stopped having a laxative effect on me, so maybe it was just that.. A laxative. Maybe try Epsom salts!

Update 3 20140228
Three days ago I accidentally consumed some starch (my fiancé's mother made me an omelette but looks like the ham was starchy). Today I'm finally over the pain! Just a few small niggles in my rib cage this morning, but three days of NSD and, as usual, I'm good again. BUT that means I am reacting to starch again. Haven't been making the Massaman curry for about a week (I say curry but when I make it it's more of a soup) and maybe that is why I reacted? Likewise I haven't taken the Lufenuron for two or three weeks.

Lufenuron
I started taking this on 6 Feb 2014 in order to rid myself of a recurring fungal infection. These fungi such as candida have a chitin cell wall which hides them from our immune system and protects them from antibiotics (antibiotics attack cell membranes but these are well protected within the cell wall).

When candida is in the fungal form it is invasive and can destroy tissue in its path, growing in strands of mycelium & hyphae. When this happens in the gut the lining of the intestine is compromised and allows microbes in to the bloodstream, and when this happens then the immune system becomes destabilised. This is what is called "leaky gut syndrome" and Fungi are one possible cause.

Possible remission? - Not reacting as much to starch??

Here are the notes I made on my phone regarding the *possible* remission I've been experiencing. I'm just making a note of it in case it proves useful later : 

-- 20140215-17 --

Sometime around Friday or Saturday I started to notice I hadn't been reacting to restaurant food for quite a while. So I tried a small piece of a potato chip on Saturday at lunchtime... No reaction. I very often have trouble with restaurant food since the ingredients are out of my control. Now, when I talk of a remission in symptoms I am only talking here about inflammation from Ankylosing spondylitis, and this inflammation comes back in force whenever I eat even a small amount of starch. 

Sunday night I was with friends and decided to try something more dangerous - some glutinous rice dumplings that also contained the added amylose starch which I react to. I ate four of them, and I definitely should have reacted. I had a modest increase in stiffness. It wasn't really painful just a tad stiff, and the next morning I was fine again! No pain in my back, ribs, hips or neck. Perhaps some minor skin issues (but maybe that was from chocolate / dairy). This is unheard of for me. I should have been in quite significant pain for at least 3 days. 

What's changed? What helped? :

1. Lots of Massaman curry - almost daily (most likely what helped)

2. Lufenuron treatment (9grams, split over several days)

3. Lots of fresh air (very unlikely)

Massaman curry

Why? Well I had noticed in late December 2013 after eating some curry at the local Indian restaurant (Mantra) that I didn't suffer from the usual dehydration .. dry mouth, eyes, nose and skin that plague me most nights. This problem also causes me significant fatigue, and it has troubled me on and off for many many years. 

Now I tried making my own Thai curry and found that it worked equally well (that was in early Jan 2014). I was of course using my new friend - Massaman curry paste. I would eat it and on the very same night the dehydration would go away. The following night if I ate with friends and didn't eat this curry my symptoms would return very noticeably. The following day I would resume eating this and the symptoms would go away again. This would occur again and again over the coming weeks with a pattern that was absolutely reliable. 

So since this curry definitely helped one immune related symptom, I think it likely that it healed the root cause of several health problems, and that likely cause is: leaky gut syndrome. 

Ingredients of curry paste:

The ingredients are: chilli, lemongrass, garlic, shallot, salt, galangal, fish paste, coriander seed, cumin, kaffir lime peel, mace, cardamom, cinnamon

I would put my money on the spices that I don't use frequently: coriander seed, cumin, kaffir lime peel, mace, cardamom, or galangal

Update 1:

Oh one more thing - I usually made the curry in my pressure cooker with bones, carrots, onions, pumpkin .. And quite a bit of curry paste

Lufenuron 

I started taking this on 6 Feb 2014 in order to rid myself of a recurring fungal infection. These fungi such as candida have a chitin cell wall which hides them from our immune system and protects them from antibiotics (antibiotics attack cell membranes but these are well protected within the cell wall). 

When candida is in the fungal form it is invasive and can destroy tissue in its path, growing in strands of mycelium & hyphae. When this happens in the gut the lining of the intestine is compromised and allows microbes in to the bloodstream, and when this happens then the immune system becomes destabilised. This is what is called "leaky gut syndrome" and Fungi are one possible cause. 

The second piece to the puzzle - getting a tummy flu

I ate something bad and came down with food poisoning once some years back. I wasn't keeping solid food down so I decided I would try fasting .. more of my usual crazy, self experimenting behaviour. I just wanted to know what a fast would feel like, as I had heard that certain spiritual people do it and wanted to understand why. I did drink water of course, I'm not suicidal. After hours of diarrhea and vomiting there was eventually nothing more in my system. My gut was empty. I recall quite clearly vomiting one final time and then within just minutes of clearing everything out the pain started dissolving away. It was surprisingly fast! I continued the fast for a while before eating and I have to say it was a wonderful experience. I think that the fact my digestive system was completely cleared out is what made the fast so enjoyable. I was happy, creative, my mind & body felt bright and effortless, had no hunger pains (drank plenty of water though!).. life like this was really a joy.

Obviously this was not going to be a long term solution though, and as soon as I started eating again the pain came back in a matter of hours. That was when the penny dropped and I realised something in my diet was causing me pain. I hopped on an internet forum (kickas.org) and mentioned this experience to others also suffering from my condition. To this "DragonSlayer" responded and pointed out that my experience illustrated the purpose behind the No Starch Diet (NSD) that he follows. He pointed me towards the appropriate sub-forum where the diet is discussed. Well, up until that time I had carefully avoided the "loonies" on that part of kickas.org. If only I had listened when I was younger instead of being so arrogant and closed minded.


So to sum all that up, I realised that something in my diet was causing my inflammation and returning to my usual eating patterns brought back the pain. Hope returned, now it didn't matter how much pain I was in, I had something to fight for.

Where to from here?

If you are interested in learning more about this diet, I can suggest the following places to start:

• No Starch Diet forum on KickAS - Folks are very helpful here so don't be afraid to ask a question - http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=postlist&Board=7&page=1 
• This is my food list showing what foods I can eat, and which I cannot eat - https://sites.google.com/site/cureankylosingspondylitis/no-starch-diet---food-list
• The starch content of foods: http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=143543
• And some more resources here

The first clues on how to beat an immune disorder.. (learning about root causes)

My early signs.

I started to notice some issues in my teen years - mainly stiffness and some hip pain. In my very late teens I had a severe iritis attack (the first of many). The ophthalmologist (Dr Ho) asked about hip or back pain, mentioned that iritis is associated with AS and had me referred to a rheumatologist (Dr McNaught). Then came the gene test, x-rays,  salazopyrin, NSAIDs etc. Things were fine for a few years and the NSAIDs kept me mobile and I seemed quite normal.

Yes, I am fairly sure the NSAIDs have permanently damaged my health. I started to have weird reaction after about 5 to 7 years of using them. Sorry my memory is less than perfect, which is why I don't give more precise dates. Anyway, the longer I used the medication the less effective it became, and yet the side effects gradually continued to get worse and worse. Eventually I reached a tipping point where I just couldn't tolerate the side effects anymore and had to look for other alternatives.

Trials.

It was my mother who mentioned people on some internet forum (kickas.org) and they were using diet to manage symptoms. I would have been between the ages of about 17 to 19 at that time and I "knew" for certain they were fools, after all how could diet have anything to do with it .. right?. Well, I could have saved myself a lot of trouble if I hadn't been so arrogant (the saying "pride goes before a fall" comes to mind). Well, that youthful arrogance has cost me a great deal. I find it curious that although it was my mother that mentioned this website where people use diet, years later when I started to actually follow the diet she became very upset and even cried. Later my family could see the obvious improvements in my condition, even my sister who is a medical doctor said to me "the medical system has failed you" (because dietary changes had worked where drugs had failed). I was in so much pain at that time in my life that I even considered the fact that ending my life would be preferable to what life had in stall for me. Years of suffering that would only get worse and worse, and still worse, and eventually my body would become completely rigid such that I would need to be confined to a bed or a wheelchair. Surprisingly it wasn't the pain that caused the greatest despair, rather it was the loss of all hope..

The first clue - antibiotics.

Bear with me on this one, it will become relevant later on! In my mid 20's I was preparing for a trip to Malaysia and Singapore. I visited my local doctor in Kingsford and asked if there were any vaccinations that I would require before going. She recommended two vaccinations: one, an attenuated Typhoid vaccination, the other a Hep A or B vaccine (I forget which). Well, the attenuated vaccine I would later learn contains a live but weakened version of the Typhoid pathogen. A normal immune system probably would have had no trouble with it, however I came down with a cough within days of taking the vaccine. Being irresponsible and not realising it was anything more than a little bit of flu I went to Malaysia - despite the cough. However the cough didn't go away and continued to get worse and worse. Soon I started to develop a mild fever and a feeling of tiredness, then later came the red spots on my chest which are a classic sign of Typhoid. My friends took me to see a doctor and he prescribed an antibiotic and some cough syrup.

Now here is the interesting thing - not only did the antibiotic stop the cough for the duration of the treatment, but my inflammation went away altogether! Now, as soon as the antibiotic course was ended I found my inflammation came right back. Dangnammit. Such a strange thing to happen, and why did the antibiotic have this effect? Well, I find it does fit well with the "Molecular Mimicry" theory I read on kickas.org. Oh and not only did the inflammation return but so did my cough unfortunately, that problem took many months to resolve.

Typhoid is a tough little critter, but not nearly as tough as whatever bug must be contributing to our AS. Whatever it is, the microbe is everywhere and going by research performed on rodents, it appears to live in them too. There is a rodent model for AS by the way, and sterile rodents do not show symptoms of inflammation until they are allowed to interact with normal rodents, ie. exposure to normal microbial flora brings on inflammation. Klebsiella have the same or similar antigens on their cell surface as do those with the HLAB27 gene, and according to the "Molecular Mimicry" theory of autoimmune disease it is this similarity that causes the immune system to become confused and start attacking you in error. The curious thing about the rodent model is that they need to insert the HLAB27 gene around a thousand times or so in order to get a decent inflammatory response. A single copy of the gene and inflammation from any cross-reaction with microbes such as Klebsiella is obviously easily modulated by a normal health body, which indicates to me that something more than molecular mimicry is going on. Some other system has failed also, and the question is what?.

When I returned home from my trip I explained to my doctor what happened. Fortunately my doctor at the time trusted me, and allowed me to try the antibiotic again. Unfortunately it didn't do a thing the second time round. The critter had adapted.

• Next - The puzzle pieces fall together