Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello again, and a couple of questions.

Hi everyone. Sorry I've not been in touch for so long. Things been up and down here. Humira not working as well as it once was (had to have a break due to a groin abcess and it never worked as well again afterwards). Managing to work pt, but still plagued by fatigue which I guess is partially depression linked. Iritis still chronic, but fairly low key thanks to the efforts of Prof Ayliff (but still likely to get cataracts before I'm 50).

But what I want to ask is this. Firstly, I suffer from a lot of bowel problems, frequent bouts of acute diahorea and persistant loose stools. I've recently been checked out for IBD, and indeeed have a close relative with UC, but I'm negative. Is this still related to AS or something different? And before anyone says anything about the low startch diet, tried it to no effect. Not surprised really, as I'm HLA-B27 neg, at the success of this seems to depend on you being HLA-B27 positive.
Currently, I'm also plagued with hand and wrist pains and stiffness. What have people found works best for this?

Best wishes to everyone on Kickas xx

Hello, alibat:




This is NOT TRUE. MANY people who are confirmed B27- have had success using NSD.

So I am surprised that the NSD did not offer at least some relief. But curious about how long until You decided NSD was of no value for You, and whether You were doing NSD or LSD or had any diet troubleshooting done.

I just don't remember Your posting on the NSD Forum; sorry if I missed it. I am not that much of an expert on specifics about the most strict diet, but would appreciate some clarity.

Regards,
John

alibat
I am negative. have tried the NSD with only mild success. but I continue to know that it is always starch somewhere that snuck in
to undermine what I was doing.
by that I mean, not just wheat type foods...
I am coming a off a month of severe diarrhea, I am not sure what it was that I finally ate or stopped eating.. but it is always my stomach that starts boiling before I get a flare...
self control in our diet is still the first key to health

Ok, I never posted on the NSD forum, but I cut out as much starch as possible (I would like to say all but I suspect there was some hidden ingredients somewhere, I can't be 100%) for a month. I still had bowel problems. I will say however, that although I still try and limit starch in my diet for general health reasons, on the occassions I slip up I am worse. I am also always bad the first day of my period, not sure why. In summary, I have a certain level of bowel issues that i cannot improve with cutting out starch, but become worse if my starch intake increases. This level can still be disabiling, making me late for work for example because I need to empty my bowels 5 times in the morning.

I am curious that some neg AS sufferers have had success. Everything I've read about it suggests that it is the interaction of kiebsiella with the HLA- B27 molecule that is believed to be the basis of the success in some individuals of the diet, so being negative I wouldn't expect it to work if this is indeed the basis of it's success.

Alibat - I am B27 negative. The diet helped with both gut and with the flares. I went on the LSD, and now follow so-so LSD. That involves, pain au cereal and the very occasional potato! Then by taking LDN (low dose Naltrexone) I manage most of the spinal inflammation and also much of the the gut problems.

Very rarely eat anything of processed foods and that includes bacon - sulfites, nitrates a total no-no for the gut. I 'always' read labels and now very rarely eat out and am even careful of food in other people's houses - they will use gravy granules, MSG which is death to the gut plus which also contains maltodextrin - and those flavour enhancing products - stock cubes and those bouillon containers - maltodextrin. Those will upset the gut, lead to gastritis and diarrhoea.

Suggest you first of all check through every product in the kitchen cupboards and put to one side anything with Maltodextrin, MSG, sulfites and sulphates. In addition fluoride is suspect - change your toothpaste for a non-fluoride one, check yr mouthwash ditto. Non-fluoride for these products are available. Aspartame, artificial sweeteners, another no-no for the gut. Do not use anything that contains artificial sweeteners.

Dried fruits are also covered with preservatives, like sulfites...know that I can't touch em, otherwise a gut upset. Got to be organic and NO preservatives.

Wheat products - the wheat here is a different strain to the English one. Here known as a 'sot' wheat, whereas the English one is the American one, a 'hard' wheat. I have huge problems with the English wheat but can eat a little of the soft wheat.

There is a whole range of foods involved with upset gut problems! Really does mean checking every item of what you use and generally eat, including eating out - just those gravy granules will lead to a great gut upset. (I so hate eating in friend's houses now, let alone in restaurants. Nasty stuff in the food chain.) In addition, would suggest staying well clear of all fried foods and cheap oils.

ALL of my gut problems of the past three years were caused by food in other people's houses and by drug side effects - was put on sulphasalzine - Azulfidine - (almost landed in hospital with that one! Appalling.) Now am ultra cautious...

Bottom line - check those kitchen cupboards and the fridge. Hope this helps.

Of course, we are all different, what might upset my gut might be OK for yours...but try these exclusions for starters. Give it time to work, like several weeks. Then challenge your gut with them one-by-one...wait for the reactions!

Hi, alibat:


Professor Ebringer wanted to be very clear in his scientific observations, so he did studies on B27+ individuals only.

It was his general feeling, however, that B27-ves would also benefit from the diet; he just never included them in his scientific testing. He did, however, suggest every AS patient, regardless of antigen status, try his LSD (London AS Diet).



In truth the molecular mimicry explanation has been well studied and the mechanism defined in B27 individuals because the structure of the Osp (Outer surface protein) is well known. However, there are other antigens associated with AS and these also have similar sequences; the mistaken identity works the same way in each, and it is most likely there is only one mechanism for all AS. The same underlying disease for Crohn's, Reiter's, and perhaps even Behcet's (as many of these patients also respond to dietary starch restriction).

HEALTH,
John

Alibat,

I am hlab27 -, and I have RA, so I know what the sore wrists feel like, ouch!
Check out the term adenomyosis, in females it casues severe low back(all month), painful periods and bowel problems. For me it does not cause much pain in the tummy as it does in the lower back where my sacrum is, I would have never guessed an internal organ could cause me SOOO much low back pain. It hurts so bad and I thought I had AS and RA, but now I need to resolve this adenomyosis issue to feel better, I am newly diagnosed.
I have to be really strict for the diet to help me, no dairy, no grains, no nightshaeds , no beef and little or no sugar.
Do I eat perfectly? No, but I don't eat grains because they cause me the most pain, and dairy is a close second. I feel less inflammation and I still feel pain, but I have decided not to give up and since I feel better I keep going.I hope it works for you.
Hope you find relief.Take care.

Thanks everyone. I forgor to add that whilst I was trying the NSD, there was no difference to my spinal/hip pain or iritis either. Anyway, I've not dismissed the idea that diet can help in some way, particulary in regard to my bowel problems, just that I'm not convinced that the NSD works for me.

As for my diet, I eat predominately vegan. I been vegetarian for 25 years and only have small amounts of dairy, plenty of fruit and veg etc and vitually no processed food. I don't eat perfectly all the time, but unless I've been particulary bad, I don't notice a big difference in symptoms.

Never heard of adenomyosis, although I do have many of the symptoms (always had painful, heavy periods). Even if I was to have it, my AS hasn't been misdiagnosed. The damage / fusion in my spine is very clear on my x-rays.

So far, a combination of Humira, naproxen (when I'm flaring), maxidex and exercise is keeping me going (and the bowel issues predate the regular use of naproxen).

Alison x

my first symptoms were "IBS" (loose bowels with undigested food predominantly in the morning. i was still having my daily bowel movements, but their consistency changed. and i wasn't digesting my food properly). since there was no pain associated with that, i just kind of lived with it that year.

the following year, when i hit 30, severe gastritis hit me over a few day period. the pain was so bad, it was frightening. had a good GP who had me thoroughly tested. was able to rule out an ulcer, gallbladder, pancreas, etc, but did scope me and found gastritis.

the doc put me on one of the histamine blockers and then another (zantac and one other) and then when they weren't doing very much, prilosec. that was the first thing that made a difference.

but it wasn't enough. i found that what i ate influenced the gastritis as well. and the bowels. i did notice a direct correlation between my gastritis and the "IBS". when the gastritis pain was at its worst, the undigested bowel movements were at their worst. if i focussed on healing the stomach, the bowels seemed to follow.

for me, keeping a food / symptom diary was essential. we're probably all different as to our triggers, but i think the food / symptom diary is general enough that anyone could benefit from doing that. for me, the things that flared the gastritis were: caffeine, dairy, anything acidic, underripe fruit. so staying clear of those things was key. when my bowels were bad, i had to be very careful with the fruits and veggies. i could only eat some dried fruits like raisins, mango, nothing acidic though, or cooked fruit like applesauce, or canned, like canned pears. and about the only veggies that i seemed to digest were the cruciferous (well cooked broccoli, cabbage (even raw like coleslaw, sourkraut, etc). and yams. meats seemed ok. and starches were the only thing that seemed to put out the burn in my stomach.

one really terrible year. then two more where i slowly crawled back to a more normal existence.

during this time, psyllium was a godsend. it helped absorb the acid in my stomach so it would stop gnawing at itself. and it firmed up the bowels to prevent accidents. psyllium is kinda magical for me, because it also seems to loosen constipation as well. my GI doc is a big proponent of psyllium.

fast forward a few years, to the age of 35, and that's when the undiff spondy / enthesitis / sacroiliitis (age 37) / neck issues started.

for the last dozen years i can tell that the gastritis and bowel issues flare and then so does the joints / tendons / ligaments.

back when i was having periods (those days are behind me) i would flare a bit each month around the start of each, some months worse than most. i used to get terrible cramps, which now i understand to be muscle spasms. thus the same thing that helps my other muscle spasms would help those. namely a hot water bottle, hot bath, etc.

but yes, GI inflammation and joint inflammation, same disease process. and yes, hormones seemed to flare them.

fast forward to today. i get more constipation than diarrhea. working on that with probiotics, magnesium, and the usual lots of water, fiber, and exercise. the loose bowels are less frequent.

also through testing found that my body was responding to dairy (casein) and egg antigens. supposedly the lack of the good bacterium lactobacillus was outcompeted by the bad bacteria (unknown bacilli) which contributed to leaky gut which allows those larger food antigen through the gut wall into the blood stream. and then my body produces an inflammatory response to those. so the other thing i do to try to control all the symptoms is stay clear of dairy and eggs.

also you can see everything else i'm doing, below my name.

every little bit helps. while i still flare, doing very well between flares right now.

more on hands and wrists in a bit.........

when my hands and wrists flare, contrast baths probably help more than anything.

1-2 minutes very hot water, 1-2 minutes ice cold water,
back and forth for ~15-20 minutes, several times a day.

i've had terrible enthesitis in my wrists.

had the left dq tendon(itis) injected with cortisone in 1998. had PT and lots of ultrasound on both the left and right dq tendon(itis) during that year. that dq tendonitis was a bear for years. but it has moved on most of the time now.

when very bad, have to really limit the use of my hands. that's a standard for tendonitis, resting the tendon, often easier said than done.

in 2006, tore a left ulnar wrist ligament. had to go to a hand surgeon and he's the one that discovered that. was able to get by with conservative treatment (meaning no surgery). rather a cortisone injection, PT for about 6 months, including ultrasound, ionophoresis, and cold laser. and i could barely use that hand for about 2 years, had to baby it for about 3.

what has helped all of my enthesitis (tendonitis, torn tendons and ligaments) the very most is LDN (low dose naltrexone). prior to LDN, many tears, several severe. since LDN (9/09) not one tear. just a little tendonitis now and again, but NOTHING like before!

some people find bracing to help. for me, bracing is EVIL! causes fluid to build up and not dissipate. gotta have movement, blood flow, even if resting something and not physically using it.