Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group More Help & Advice is Needed

I posted this in the NSD and diet related forum, but I thought this could be good for a new discussion. Besides, I need more help or advice. So far it seems AS is kicking me and I am not kicking AS. I am a veteran and refuse to give up without a fight.

I was diagnosed with AS just a couple weeks ago. I have not been to a rheumy yet but have an appointment next March. It is a long wait but better than nothing at all; considering my GP told me she would treat it and I did not need a rheumy. I am only taking Ibuprofen on a regular basis. I am trying to self-treat myself but I am getting worse. I have been doing a lot of research. I am thinking that I have had AS for a lot longer than I had previously thought.

Since last week, I have been on a VERY STRICT NSD. I said in a previous discussion on this website, that I have been on a NSD diet, before. This ends up being not true. I was nowhere near being starch free till last week. I have found that everything has starch and I am having trouble finding things to eat. I now have a journal and a bottle of iodine to battle the evil starch villain. I am not seeing any improvements and only getting worse. I am losing more weight which is bad because I do not need to lose much more. I am pretty lucky because my wife is in the battle with me. She has told me that she does not want me to go into this alone. She has been making all kinds of stuff. One of my problems is that even though I am starch free there are foods that are still making me sick. I swear there is no starch but I still get sick. When I say sick, I mean that I get diarrhea and just have an overall feeling of awfulness.

I want to thank everybody for this wonderful website and any advice that may come. I will keep trying to kick AS.

Welcome Key. I too am new at this. I was diagnosed 9/20 so we have alot in common I guess. Well as far as on the info or lack of . I tried the NSD and found that the effort it took to find starch free food and stuff was more work than the good that it was doing my body. I have already been to a Rhuemy and am on Humira and NSAIDS will pain meds and muscle relaxers so that helps. I found on here that if you drink white chardonnay it helps. Well I got some the other day to try and it did help a little. I am not a drinker (wine or otherwise) but at this point anything to help. It helped my muscles and helped for a good night sleep. Which I guess any wine would do. I would try to see if there is another Rheumy that has another appt sooner. I hate to think you have to be in pain that much longer. If you want to talk more (maybe be each others personal support system) send me a message and I will get back. I am on temp dis right now so I am online most all day. Best of luck my friend.

Key,
it sounds like classic AS / autoimmune / bad gut bacteria to me.
I am not an honor student, I have never done the NSD successfully. yet, by fasting, then eating only apples for a few days,I do know that it is what I am eating that makes me sick. yes, everything will make you sick when you first start the diet. Some things just make us ache, until we are free from all the bad stuff!
the diarrheas are bad and also an indication of bad flora..

good health is worth all the effort, your wife is a keeper!

Any GP who advises against getting specialized treatment is probably not worth seeing. I'm not conviced that NSD is for everyone with AS. I am conviced that all AS sufferers should probably give NSD an honest trial (several weeks of strict diet?), but AS is too variable to believe that any one treatment is the best for all. That's why anit-TNFs don't work the same for everyone also.

I never did any fasting, and I've had good results with NSD. I only tested with iodine a few times early on, and I decided to depend on the safe foods list and to pay more attention to food labels, with good results so far. I feel blessed in that NSD has worked so well, but it's probably because I don't have much any problems with eggs, sugar, or dairy. I believe that many AS sufferers also have other associated physical problems that call for more comprehensive treatments. One auto-immune problem often means that there will be other auto-immune problems involved eventually.

I wish you the best of luck in finding the right treatment for you.

--Greg

The diarrhoea and gut problems could just be a reaction to the dramatic changes in your diet. Weight loss might be because you aren't getting enough protein or fats, or just not enough calories generally (easy to do when you drop out all starches). Also, because raw foods are quite easy to include in a NSD, but can be disaster if you have inflammatory bowel problems, you could find that the additional raw or higher fibre foods than normal are causing problems. I know I can't take a lot of raw food at all, which is why a low starch diet is much easier for me (and has as good results) with very well cooked veges, that would certainly test starchy.

If you are getting worse with the new changes in diet, it might be worth going back to the diet you were on before for a while. Play around with your diet. NSD is worth trying strictly, but it doesn't work for all of us.

I have ulcerative colitis,as well as AS. IBD seems to bother many people with AS. All the fruits and vegetables in the NSD give me the runs. There are quite a few people here who cannot do the NSD or who have tried and it didn't help. You might need to modify the diet.