Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Searching for more things to try-recommendations?

No one has yet answered my query about having tried the NSD with no success...does that mean that everyone on it feels at least some benefit?!

If a person with AS can stick with the diet it is highly probable the level of inflammation as measured by ESR & CPR will be reduced - John has occasionally posted a diagram of results from Ebringers clinic illustrating this - but our perceptions informed by pain and discomfort can be very subjective. Often improvement is gradual and we forget our reference starting point, and of course if there has been mechanical damage there is always going to be stiffness and discomfort unrelated to inflammation. So to answer your question, not everyone feels benefit in the short term; often, like Chelsea's husband, it requires patience over a period of months. And those that do not benefit significantly will probably have other gut problems that need sorting.

Before I started the diet rigorously I had days when I limped out of the house in the morning, or couldn't turn my head easily. It was sometime before I noticed I wasn't having such days because I was still having to cope with living with a fused spine and damaged hips. And even when my ESR had dropped into single figures I didn't feel much different overall from when it was higher. The effects really struck me in a dramatic way when I hurt my hip lifting a heavy weight; I thought that's it, big flare in the morning, because that was always the result of such accidents. But when I woke the following day, nothing, and I was really taken aback! My AS no longer reacts to such traumas, but it took me months to realise this.

Also, when we are having inflammation we can become very apathetic and defeatist. It takes time to come out of this and start feeling things differently.

Hi Searching and welcome to KA!

Your partner is very lucky to have someone in his life who cares enough to do this kind of research. Not everyone is willing to do so. So, in case he hasn't said it lately (and I'm not knocking him for that, it's easy to forget others when hazed by pain and depression) ... THANK YOU!

I would encourage his next rheumatologist to test for the HLA-B27 tissue type. It only occurs in about 6% of the population, but of that 6%, about 90-93% have AS. These percentages differ based on country and researcher, by the way. But in all, they're close. Being B27 negative doesn't mean he doesn't have AS, it just means his will be that much more difficult to diagnose definitively - if, indeed, AS is what he's dealing with.

Also, when it comes to men, while the majority of men with AS do seem develop severe kyphosis/spinal deformity, some do not. Again, if your boyfriend is one of the latter, his AS would be that much more difficult to diagnose. Did his last set of xrays or an MRI indicate visible damage to the spine, specifically the sacroilliac area?

I would definitely encourage your boyfriend to start exercising again. However, if it's been a while, he may have to start extremely slowly. The mistake alot of people make is to try to exercise at their previous levels, instead of starting where they are now. He could get a fitness assessment done, which would give him a good idea of how much he should be doing at first. If he's only capable of one minute at a time, then have him do one minute, 15 times a day. Also, he should start with stretching/flexibility exercise so that his muscles become accustomed to working again. Then add strengthening and then cardio.

All of us go through periods of pain and/or rebellion during which we do not exercise. This is normal. I think, anyway. Speaking only for myself, after two.5 years of rigourous changes in my lifestyle, including exercising more than I have in years, I hit overload a year or so ago. While I continued all my dietary changes, I stopped exercising regularly. It was total rebellion and frustration at the changes I'd had to make. However, I continued to be very active, and I never stopped taking my dance classes, so the impact wasn't as bad as it could have been. Over the past six months I've begun walking even more than ever and going to the gym 4 to 5 days a week. I feel tons better on the pain front (although there is another reason for that) as my fibromyalgia has calmed down because of the increased muscle use.

As for diet, many of us have found that reducing the starch levels and dairy intake helps. I do not go totally no starch, as I believe that it is unhealthy to restrict your diet to that extreme (ie. getting rid of most fresh fruits and vegetables). We don't all agree on this, it's just my take on it. However, I have cut all wheat (OK 95% as I cheat periodically), most potato, corn and oatmeal, and most cow dairy from my diet. The difference is dramatic when it comes to my inflammation and pain levels. Not to mention that altering the diet helps in weight loss, which can also help lower pain levels by lowering the strain on our joints. The Arthritis Society teaches that for every 10 extra pounds of weight, 150 lbs of strain is put on our joints.

As to whether or not everyone responds positively to the NSD, I cannot (indeed none of us can) say so for sure. All I know is that it works for some people beautifully well, not so for others. We are all individuals, with physiological systems that are unique unto ourselves. What works for some, may or may not work for others. That said, it's worth a try, if only for the other health benefits that may result.

You mention your boyfriend not wanting to go on the biologics due to their expense on the National Health. Respectfully, I would suggest that if your boyfriend is offered one of the biologics, he reconsider this. A great many of us here (myself included) who have begun these new drugs have had astoundingly good results. Quite literally, our lives have turned right around. Not everyone responds this well and, certainly, some have difficulty with these drugs due to side effects or allergy, but they are well worth the try. Or at least, worth looking into as a viable alternative to NSAIDS, which are stomach eaters and, in the long term, can weaken our bones.

Anyway, I suppose I should stop, as this is turning into a horrifically long lecture. Sorry 'bout that.

Hugs,

Careful Kat,

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I do not go totally no starch, as I believe that it is unhealthy to restrict your diet to that extreme (ie. getting rid of most fresh fruits and vegetables ).

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I respect your right not to do the NSD and am not worried about that. However, the statement above is NOT true and is very misleading to someone who has only just heard of the No Starch Diet. The NSD is completely different to the Atkins diet where fruit is restricted/practically eliminated and large amounts of butter and dairy products and fat are relied on for energy and calories. That would certainly be unhealthy if that were the case.

Fresh fruit and vegetables are DAILY STAPLES on the NSD. My husband eats large amounts of: apples, pears, oranges, tangelos, mandarins, strawberries, blueberries, pineapple, green grapes, peaches, plums and a variety of dried fruit as well. In fact, the only fruit he doesn't eat are bananas and mangoes due to their high starch content. And his list of vegetables is also long eliminating only starchy ones eg potatoes, sweet pototoes, corn etc. He has fresh salads and stir fried or steamed veges every day.


Respectfully,
Chelsea

Hi, searching:

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No one has yet answered my query about having tried the NSD with no success...does that mean that everyone on it feels at least some benefit?!

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Just about everyone with AS could benefit greatly by reducing their starch load, however, diet is a very personal thing, and many make the active choice not to treat themselves through diet.

Another of the many problems is perception; not everyone FEELS benefits early enough to continue with the regimen. Few people even have the discipline to actually learn what to eat and what to avoid; there is a lot of time spent just getting the diet 'right.' Another major issue is the overall time involved: It can take over a year for the LSD to provide perceptible results, which is why most of us go NSD and even hurry things along by doing various cleansings.

So many have found the answer through diet, and subsequently left the forums, that getting an accurate read on how many it has worked for versus how many it has not helped is not a profitable pursuit (in the interest of accuracy). In the records I have tried to keep, well over 50% of those doing NSD continued to be strict, or have stayed with LSD or some starch reduction because they achieved relief. We do, by natural selection, have a highly skewed distribution represented here.

Many people now doing NSD/modified LSD do not even visit the main fourm, and especially do not post, because of some of our previous discussions on this topic. Besides, it is rather disheartening to see what people otherwise are faced with; it can make you crazy!

The results are that of B27 positive people who are indicators (of inflammation through ESR), 94% improved due to eliminating some starches. However, the gradual reduction in ESR would suggest that about half of this group would not feel significantly better within the 9 months test peroid; it would take well over a year for many to drop below 25, and even two years for some.

I have found a considerable amount of additional evidence supporting dietary exclusion of starches in the remediation of AS--independent of Ebringer's work, both in space and time--to the extent that there should be no question about the value of NSD, for anyone in their scientific, dispassionate right mind.

FOOD IS EVERYTHING with this disease.

Have your friend pay a visit to the NSD Forum; it can be quite encouraging, as well as enlightening.

Best Regards,
John

I would agree with Chelsea... fruits and veggies make up 60-70% of diet... another 5-10% is nuts.

First going on diet I was a bit worried about this as well, but all my medical tests have come back extremely well. Have had blood pressure, cholesterol, glucose all tested and I come back extremely healthy in all categories.

Not to say I do not want to add back some starch... I would like to begin eating brown rice, quinoa, millet and other whole grains more often. But point is that NSD is very healthy for me.

Tim

& careful Chelsea! Kat has been sticking to her argument for some condiderable time, and there is more here than mere logic. I smell a dietician!

Hi Kat, on the relation between B27 and AS, the relationship is that approximately 90% of folks with AS are B27 positive (depending on the prevalence of B27 in the population at large), but the converse is not true, rather only 1-2% of HLA-B27 positive people develop AS.

http://www.emedicine.com/med/topic2700.htm

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Approximately 1-2% of all people who are positive for HLA-B27 develop AS. This increases to 15-20% if they have a first-degree relative with AS.

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I'll also add a comment on relationship between NSAIDs and bone weakening - I'm reading "bone weakening" as meaning a decrease in bone mineral density(BMD) - the relationship between NSAID use and bone mineral density has been studied, with most articles that I could find through medline pointing to either no effect or NSAID use actually leading to an increase in bone mineral density.

Decreased bone mineral density is termed either "osteopenia" or "osteoporosis" depending on the extent; however it is not "osteoarthritis" which is a different condition based on joint cartilage health, and there is controversy on the relationship between NSAID use and the progression of osteoarthritis.

link to previous post on NSAIDs re osteoporosis and osteoarthritis:
https://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=208666&page=&vc=1

Hi, Evelyn:

There is a rather large section of the AS population that has gone missing!

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...only 1-2% of HLA-B27 positive people develop AS.

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Ok, if this were true there would be MANY fewer people with AS: 2% of 8% is 1.6 per 1000, and the clinically observed incidence of AS is almost certainly close to 4 in 1000; you have reduced the actual number of persons with AS in the United States by more than 1 million (I wish it were that easy--Cured by FIAT!).

I know that there is some older literature in support of your numbers, but most of the researchers have updated their observations and now recognize AS as an emerging disease; the rates are increasing due in part to improved diagnostic tools, but also (I believe) due to lifestyle and drug choices.

FROM Maxime Dougados, et al

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In continental Europe, prevalence ranges from .2 to 1% of the whole population suggesting that this disease is far from being rare.

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FROM Prof. Ebringer's San Antonio lecture

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(3) HLA-B27: The size of the problem.

It is known that 8% of the US/U.K. populations are HLA-B27 POSITIVE.

Since the population of the U.S is 275 million, there are 22 million people in the U.S. who are HLA-B27 POSITIVE and in the U.K. there are 5 million who are also HLA-B27 POSITIVE.

It is agreed by many workers, that 20% of HLA-B27 POSITIVES have some symptopms of AS.

THUS: THERE ARE 5 MILLION AMERICANS with some symptoms of AS.

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About NSAIDs: I'm sure the FDA has done their best to protect us from unintended consequences, and reviewed all the (pharmaceutical company-sponsored) studies. Of course we, as patients, have been given ALL the relevant data! There is no problem with drugs like Vioxx. Bone mineral density may not be the only issue with NSAIDs.

FROM AAOS Buletin

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In the absence of strong clinical evidence supporting or refuting an inhibitory effect of NSAIDs or COX-2 inhibitors on fracture healing, we can only rely on data from animal studies. A careful analysis of those data show that high doses of drugs that inhibit cyclooxygenase-2 impair bone healing during the time those drugs are administered. Once the drugs are discontinued, animals quickly recover their prostaglandin production and rescue the inhibitory effects. To extrapolate this scenario to a clinical setting, one might imagine that a patient who sustains a fracture or undergoes an operation requiring bone healing might safely be able to take an NSAID or COX-2 inhibitor for one to two weeks and then discontinue the drug. In this case, normal, timely healing might be expected to occur. However, there may be a concern that these drugs would interfere with bone healing when comorbid conditions create settings that are not optimal. For example, are they safe for use in patients who smoke or take glucocorticoids, who have diabetes, or in whom fracture stability or operative fixation is not ideal?

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Maybe the missing AS group have just expired:

FROM Reconsider Organization

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7. "Each year, use of NSAIDs (Non-Steroidal Anti-Inflammatory Drugs)
accounts for an estimated 7,600 deaths and 76,000 hospitalizations in
the United States." (NSAIDs include aspirin, ibuprofen, naproxen,
diclofenac, ketoprofen, and tiaprofenic acid.)
Source: Robyn Tamblyn, PhD; Laeora Berkson, MD, MHPE, FRCPC; W. Dale
Dauphinee, MD, FRCPC; David Gayton, MD, PhD, FRCPC; Roland Grad, MD,
MSc; Allen Huang, MD, FRCPC; Lisa Isaac, PhD; Peter McLeod, MD, FRCPC;
and Linda Snell, MD, MHPE, FRCPC, "Unnecessary Prescribing of NSAIDs and
the Management of NSAID-Related Gastropathy in Medical Practice," Annals
of Internal Medicine (Washington, DC: American College of Physicians,
1997), September 15, 1997, 127:429-438, from the web at
http://www.acponline.org/journals/annals/15sep97/nsaid.htm , last
accessed Feb. 14, 2001, citing Fries, JF, "Assessing and understanding
patient risk," Scandinavian Journal of Rheumatology Supplement,
1992;92:21-4.

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Regards,
John

Hi there. Thank you for clarifying that. I have seen so many people saying they can't eat this, that, the other and still 'others' because they did the iodine test and the test showed that the various fruits and veggies being name were positive for starches. So, they cut these out of their diets as being starchy. Perhaps these people were being overly cautious?

And just to clarify one more thing, I also do not believe the Atkins diet is healthy, for the same reasons as I prefer not to go NSD. I'm not trying to be difficult or combative on this issue, but I grew up on a diabetic diet in which all the food groups and moderation in everything (especially refined sugars) was the rule. Throughout my life, noticing how I feel when eliminating various foods, or eat others too much, I have come to the conclusion that the human body requires a certain amount of whole grains. Personally, that has become brown rice, spelt, kamut, quinoa and millet. I believe that it is the highly refined grains that cause so many problems with the human system, rather than all starches/grains. However, these are my beliefs, based on years of experimentation and experience. I would certainly never claim that what works for me will, necessarily, work for everyone ... with AS or not.

Hugs,