Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Looking for the NSD Crowd

Dear John: I'm new to the site: 51 years old, had a bad case of iritis 2 years ago and diagnosed HLA-B27 then. (Found out my father has it all along, he's 76 and doing well). It was a relief to know all those aches and pains over the years had a cause. Compared to many of the other posters I read, I am in great shape. I am not under medical care, except for eye treatment, mainly because I'm not sure of finding a doc who knows much about it. Started the London Diet 4 months ago and after 4 days felt in remission for the first time in a year. I pop a couple of ibuprofen every night, I am a regular jogger, and have very little joint pain.

I still eat some starch, but it seems reading the posts that zero starch is much better. Ate a lot of trail mix at first, but the calories in the peanuts were too much. Question is this: is it enough to read the nutrition label for complex carbos to stay away from things, or are some carbos OK? I would love to get back to Bran Flakes and oatmeal which one poster says is OK.

I wish everyone on the site good luck and good health. I feel somewhat guilty even posting this, since I am in better shape than most.

One last question: do you know any AS-joggers? Running is clearly good for my flexibility, but except for the carbos, it is the worst thing for inflammation. I feel run down for a couple of days after jogging and I would like to do more.

Good luck.

Regards,

Mike (Chicago area)

Dear Mike:

It is very encouraging to hear from you, and any improvement is a great thing. AS runs the total gamut and you have been (knock wood) one of the relatively lucky ones that we are all happy for.

I don't know whether in your case it is really necessary to continue with an aggressive NSD except during times of flare or to get the LGS under control. This should help avoid the iritis in the future, but if you have trouble with more episodes of flare or the iritis, it may be wise to begin the Azulfidine--EN; according to one old ASA newsletter I have, it actually prevents the iritis that I never want to get again! It can damage your vision, and I think that happened to me to some extent.

If you are not in flare, jogging is not bad for you, but during the flare and due to muscle (and other) cell distortion caused by AS, the repetitive impact can be very harmful and precipitate another or more severe episode. The trouble is really in deciding whether you have some incipient trouble and I guess the only way I would know is my pain levels...although our bodies lie to us after so much pain for so long. The basic thing I would consider is just how long I had already experienced AS pain--this will give you an idea as to the amount of muscle and synovium changes had taken place already.

Jogging can be very good because of the greatly increased lymph circulation wherein whatever numbers of the bad IgA are produced, they will not congregate at a given location long enough to trigger cell destruction. If you are a jogger and already jogging, by all means continue. Otherwise, I would recommend swimming, which is the very best exercise for AS and gives us perfect justification for joining the local health club.

As far as the starch-eating, we each have some tolerance level and I hope yours will remain so high (stay away from NSAIDs from aspirin to whatever zebra stripes they will try and push down our throats like so much candy next; sorry, ibuprofen, too, is not for us). I believe that too many mild cases like yours will turn severe due to the use of NSAIDs like Aleve by people who do not even know they are B27+. The mechanism is the LGS (leaky gut syndrome) that is as often the result of NSAID usage as it is the disease process. This accelerated my own condition considerably. Avoid doctors at all cost!

Carbohydrates are not bad--just starches. Most sugars are just fine, although in very bad cases lactose in quantity can be bad. I don't know whether pectin assays as a carbohydrate, but it is good. In your case, some whole grains might be tolerated, but the very finely divided, processed, bleached starches are potentially murder--they present a massive colloidal surface as a bacterial substrate.

Hope I haven't jinxed your ibuprofen usage, but I don't even agree with waiting for trouble in the digestive tract; I believe that it is already there. Perhaps just the switch to the Azulfidine--EN would be much safer if you can tolerate sulfa drugs and can manage for a few months while it kicks in. With proper diet and supplementation you should not need either! Let's hope.

Glad to have you aboard (and sorry to be so wordy), Best Regards,

John

Krishna:

You saw DragonSlayer has many answers to your questions. You (and Mike in Chicago) are news in this site, like me. And I want to tell you about two others very interesting sites:

1.- The bible of NSD (untill DragonSlayer make a book whit his knowledge) is the Carol Sinclair's "The IBS Starch-Free Diet". Some portions of book are here: http://easyweb.easynet.co.uk/~design.machine-tanya/irritable.bowel/author.htm. You can buy it by Internet, on Random House site.

2.- Many answers of DragonSlayer to questions about NSD an AS are on Old Kickas: http://64.177.61.15/cgi-bin/discussion/wwwthreads.pl?Cat=. I don't know how long.

Zorte on, lagunok. (Good luck, friends).

Pello Zubiria

Edited by Michelle in Md on 09/16/01 09:28 PM (server time).

Dear John: thanks so much for replying.

I take your advice about the NSAIDs seriously. I'll cut that out now, and see how things go. I take it as much as anything to help me sleep.

I am going to try NSD for a few days then introduce some things one by one and test the tolerance. The original improvement took only a few days to kick in. As I said, life is tolerable, and I am in much better shape than many on the site, but I have not had a long remission in some years now. Very little pain, but feel run down most days.

Anyway, good luck to all, and I will be a frequent visitor to the forum.

Best Regards,

Mike

Hello Mike, just a little concerned what you say about 'feeling run down'. AS inflammation does cause a little bleeding, and NSAIDs can cause even more. Are you having blood tests, and what is the red cell blood count? Very important to ensure no anaemia. This is one reason the London AS diet recommends high protien as well as low starch. Prof Ebringer suggests to his patients they eat plenty of steaks etc.

Dear Pello,
Thank you very much for the references.
Unfortunately, I could not locate the book in either amazon.com or randomhouse.com . Appreciate any help in locating the book.
BTW, Iam able to walk a little faster with reduced limping. More details later.

Thanks
Krishna

Dear Krishna:

Look at here: http://www.uk.bol.com/cec/cstage?eccookie=&ecaction=bolprditmview&PrdId=501234161&search_click=Y.
The Carol Sinclair's book is available on uk.bol.com.

On egin. (Bon apetit!)


Pello Zubiria

Edited by Michelle in Md on 09/17/01 09:34 PM (server time).

Dear Pello,
Thanks for a quick response. Will soon get the book.
Thanks

Dear Mike:

I did not emphasize the supplementation enough, but even after I was on the NSD for a while I still had the common run down feeling until supplementing quite aggressively. Iron is a key for this, but the main nutrients we lack due to AS wasting are calcium, boron, magnesium, copper, selenium, vitC, niacin, folic acid, vitB12, vitE, and iodine. I take multiple RDAs daily; excessesses of all vitamins but the oil solubles (E, D, and A) are harmless, and I don't know if anybody has ever ODd on E. VitE, EFAs, and borage seed oil are very helpful, and especially when taken at night, well after the late calcium dosage. Look for starch-free or liquid vitamins.

The colloidal minerals (trace minerals) are good, also, in helping the quality of the alimentary lining (mucosa), as well as enzyme production--but whatever they are theorized to do, I have noticed improvement after taking them, also.

With most nutritional therapy, results are slow coming--especially when replacing bone, bone matrix, and micronutrients contained therein. However, a bit of iron and iodine, B12, and folic acid might restore some energy in relatively short order.

Hope this helps,
John

Dear Mike:

I did not emphasize the supplementation enough, but even after I was on the NSD for a while I still had the common run down feeling until supplementing quite aggressively. Iron is a key for this, but the main nutrients we lack due to AS wasting are calcium, boron, magnesium, copper, selenium, vitC, niacin, folic acid, vitB12, vitE, and iodine. I take multiple RDAs daily; excesses of all vitamins but the oil solubles (E, D, and A) are harmless, and I don't know if anybody has ever ODd on E. VitE, EFAs, and borage seed oil are very helpful, and especially when taken at night, well after the late calcium dosage. Look for starch-free or liquid vitamins.

The colloidal minerals (trace minerals) are good, also, in helping the quality of the alimentary lining (mucosa), as well as enzyme production--but whatever they are theorized to do, I have noticed improvement after taking them, also.

With most nutritional therapy, results are slow coming--especially when replacing bone, bone matrix, and micronutrients contained therein. However, a bit of iron and iodine, B12, and folic acid might restore some energy in relatively short order.

Hope this helps,
John