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Joined: Sep 2007
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DavidP Offline OP
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Hi Kylie,
Yours is a very good story. I'm particularly interested in your progress since my progress has been quite similar. Initially I had great results - the inflamatory "body" heat stopped almost immediately but I didn't respond as well as I'd hoped in relation to inflamed joints (particulary breast bone and lately SI involvement) so progressively had to remove bacon and other processed meats, all nuts, all diary foods (even yogurt) and eggs.
After about a year I started looking at sugars and removed raisins and sultanas which I'd come to rely on in salads, all dried fruits, and finally in the last month dates (also sugary but which I used to love to eat - sometimes 10 a day).
If you come back to this post I' be interested to know what fruits you can tolaerate.
I still take berries (blueb, strawb, and raspb) as they are low sugar (about 4% I think) Other fruits like apples pears are higher about 9% and I have just started to remove them.
Stone fuits are probably more sugary so when they come into season again I'll probably avoid them too. Pineapple I still take as most people seem to tolerate them. Paw Paw and avocado I eat but I'm a little uncertain about them.
What I've found confusing is that most fruits don't seem to flare my IBS symptoms but I still feel they might be causing my joint problems to slowly worsen.
For me starches cause rapid diarrhoea 'dumping' so its easy to judge them as bad but fruit seems harder to assess.
Hope my post doesn't detract for your very positive contibution and I hope you continue to keep your AS under control.
Best Regards
David P.
Thought for the day from Seneca
'The poor lack much, but the greedy lack everything'

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Hi David - yeah I noticed a few of your posts and thought we sounded similar in our intolerances to dairy and sugars. I too find problems with processed meats (could it be sulfites? I don't know), eggs (are evil) and I can only tolerate nuts in small amounts when I am 'good'. I also seem to be able to eat berries (I buy bulk frozen blackberries and raspberries and have never had a problem with them. I am deeply suspicous of strawberries and haven't been brave enough to test them again after a few flares that I thought could be attributed to them. I know that they are a common allergy food and are botanically unrelated to the other berries. As for other fruits, the worst seem to be apples, pears, bananas (of course). Paw paw and mango and avocado seem to be OK in small amounts (I'm least sure about paw paw). Stone fruit too seem to be OK in very small amounts. Kiwi fruit are evil. Hmm, what others? Pineapple is my friend. Cherries are good. Tomato and tamarillo seem perfectly fine - I appear to be OK with all the nightshade family (except potatoes which are the most evil of evil food in my opinion).

When my IBS was very very bad (ooooohhhh so bad) I found that all fruits would make it worse. Well, at that point FOOD seemed to make it worse, actually! I don't know if it was the sugars or the acidity or what, but it was definitely a thing. I avoided them all at that point. My IBS is now pretty much under control and fruit doesn't seem to flare it up, though I'm careful about what I eat and how much I eat.

Hey interestingly, I seem to be able to tolerate goat and sheep yoghurt and cheese FAR better than cow and I eat them regularly (except when I'm being really strict). In Sydney I can get bulk goat yoghurt at middle eastern grocery stores cheeply and it is unreal (prob not in Sale, eh?). Oh, and rice is also OK for me in small amounts, while other grains make me flare just by looking at them - even quinoa. Rice flour products flare me (i.e. noodles). It must be the processing making it more accessible to the bacteria or something. I have read others here who are the same. Weird, though.

All this I worked out with a food diary that I kept religiously for over a year. It seems to be terribly complicated and I'm still learning, but I am now managing it. For me, the food diary was definitely the answer.

Good luck with it all.
Kylie

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Kylie-

May I ask how long you have followed the diet? How long have you been in the lower pain?

Thanks,
Stacey

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DavidP Offline OP
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Hi Kylie
Thanks for your very informative reply. It's great to see how other people are attacking their condition. Before I came to this site I was frustrated by not having any personal contacts who had a spondylarthropathy so had no idea whether I was typical or atypical. Now I would categorise myself as a bit atypical. I did not manifest any significant symptoms until about 2004 (then 47 years old). I had a bout of infective diarrhoea in Nepal in 2002 (probably Salmonella or Shigella) and on returning home a few months later had what I thought was a pulled intercostal muscle at level of 8th R rib. Although I recovered in about a month a bone scan (OCT 2006) revealed that there was a hot spot at that precise spot. Turns out there are some intercostal synovial joints that link 7th-8th rib and 8th-9th rib so that was my first joint involvement. That was followed by a mild inflammation of the sterno-manubrial joint which has persisted and worstened to this day. In 2005 had acute dactylitis of 3rd and 4th toes of right foot and then diagnosis of undifferentiated spondylarthropathy with psoriasis (scalp). Had conventional treatments with salazopyrin and then MTX for about a year before switching to LSD in August 07. Had fantastic initial response to diet but unfortuneately stiffness slowly worstened in thoracic and cervical spine so that have gone to NSD and now to looking more closely at fruits. In recent months I have had burisitis and some tendoitis in left hand which I hope will resolve in the absence of the more sugary fruits and DATES.
Re processed meats - I'm sure processing probably involves being steeped in some sort of sweet fluids. Probably same for smoked fish and smoked meats which my IBS can't cope with.
Re strawberries - I wonder if the seeds are the culprit - tried to test for starch but appear negative. Same might apply to the seeds of kiwi fruit. I don't eat mangos only because some previous posters say they contain starch.
Re goats yogurt - Have not tried this though have come to terms about not eating yogurt and cheese. Note that most feta cheeses are packed in milk.
By starting with syptoms of spondylarthropathy in middle age it is assumed I will be a mild case (I sure hope so).
One thing I think is interesting is that the manubriosternal joint and the SI joints are near to sites of bone marrow, sternum and iliac crests respectively. Of course the bone marrow contains elements of the lymphoid cell lines that pump out Anti-Kleb antibodies that unfortuneately also attack the self.

Thanks again for your thorough reply.

Regards David P
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He has his wish, whose wish can be
To have what is enough.

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Hi!
When I read this forum I am constantly amazed at how different everyone is in terms of their symtoms and yet there is this overriding commonality as well - so thanks for sharing your experiences David. I have a tentative diagnosis of AS (I am HLA-B27+), as I do not yet have the "diagnostic radiographic changes" in my SI joint and lower spine. I do, however, have persistant inflammation in both these areas and in my neck as well and fortunately have a rheumatologist who knows that AS isn't always straight forward to diagnose. I get inflammation over my whole body when I'm in a bad flare. Ribs, right ankle and left knee are particularly problematic. I luckily found this forum very quickly, and hopefully will never sustain the damage that so many here suffer with.

Hi Stacey - to answer your questions I have been following either a NSD or LSD for two years now. I tend to go low starch when I'm 'good' and go no starch when I'm in a flare to get me out of it. I had chronic pain in my lower back for about a year before that, and in the months before diagnosis and finding this forum I was in severe pain in my lower and mid back, right hip and neck. I now look back and realise that I also had flare about 10 years ago that lasted about nine months.

Hey, one more thing for those who suffer with GORD - I had it severely - I mean chronically - I was taking medication like an old bloke and I was a woman in my early thirties! It has virtually 100% gone with the NSD/LSD. Just one more success. It makes me smile everytime I realise this. Reflux is horrible!!!!!!!!!

Keep fighting!
Kylie


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