Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; No/Low Starch Diet Success Stories

I am sorry if I disappoint (well no actually I'm not sorry at all) but I think all this diet rubbish that this Forum has far too much of is a load of nonsense.
It is like all this Holistic or alternative medicine that you hear so much about these days. It is just a load of witchcraft hocus pocus mumbo jumbo that does far more harm than any good. I have yet to come across any actual proof of any such diet working for A.S. patients.
If it was all as simple as a change in diet then every rheumatologist in the land would be recommending his/her patients being on such a diet.

Hello, Frederick:

Thank You for posting Your opinion.

Everyone is welcome to post helpful suggestions and even "nonsense," in the correct venue. Your post has been moved from "success stories" because it is not a success story and certainly not relevant to success stories.

As to Your complaint, You should understand that most people within this forum do not consider their disease an academic toy, rather it is a daily reality they must confront in their own way.

Personally, I have proven diet to myself and that is good enough for me and I am willing to share my experiences with others about this particular topic.

So You have an OPINION about diet--welcome to the club--but if diet is not attractive to You and You have never experimented with it and have no personal experience, why would we pay any attention to Your not very unique opinion? We can get the same opinion from many physicians who have a lot more credibility, despite never helping their patients resolve AS and avoid permanent skeletal damage and fusion.

You SAY this:


How would You "come across" the proof You are not even looking for? And most diet deniers will only move the goal posts whenever confronted with the FACTS. Perhaps You wanted an argument instead of finding out if diet methods could offer something positive for You. I learned a very long time ago that people who do not want to be convinced will not bother; enough people with AS have had the results they were seeking to justify keeping this forum open and, in fact, all of KickAS.org going.

HEALTH,
John

I am glad that you are having success from a special diet for your A.S. We all have to live with whatever ails us as best we can by whatever works best for us.

I have tried various diets over the years although it was a very long time ago. So long that I don't even recall what those diets consisted of.

There is absolutely no reason why you should pay any attention to my as you call it "not very unique opinion". So there must be someone who agrees with me on this one then even if it is only "manny a physician".

Yes I agree that as you suggest these physicians don't seem to get much success in treating their A.S. patients but as a patient of these very physicians myself for over 50 years I know that only too well.

I think my posting against a diet for A.S. is just that I am more of a man of science than someone who believes in the latest food fad whatever that may be.

As I said earlier I am honestly glad that you seem to be having some success with your diet as a way of controlling your A.S. Let's just hope the rheumatologists come up with something that works for the rest of us some time soon.

Hello, Frederick:


I am glad You are a man of science, because You will get much more out of reading Professor Ebringer's technical papers that way.



Throughout my career, I worked with many scientists and few had the broad knowledge and training of Professor Ebringer who, although not the first to discover the diet connection with AS, helped to very adequately explain the reason diet works.

HEALTH,
John

The book I recommend to new A.S. patients is one written by an American rheumatologist and a fellow sufferer from A.S.

Ankylosing Spondylitis (the facts)
by Professor Muhammad Asim Khan MD, FACP, FRCP.
Professor of Medicine
Case Western Reserve University School of Medicine
Cleveland Chio USA

Hi John,
I believe in diet after going through many posts in KickAs and internet, though I have not met anyone in person. I have posted about my diet, present condition and the treatment being taken by me.
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=516471&page=2

Since the effect of biologics has become very less effective, I started NSD 6 months back besides taking Humira (Exemptia). My idea is to give up biologics if diet works. Even with biologics and diet, Presently, my movement is very much restricted (just 25 -30 m) and is mostly confined to house. Hence, I started thinking whether diet is working for me at all. The problem faced by me in this diet regime is, almost no support except through online. Doctors discourage diet. Unfortunately, my iron level has increased limiting my Non veg intake. I stopped / reduced items having high iron. I lost about 9 kgs. I hope now iron level would have come down. I am finding helpless since, with medication and diet still having mobility problem. The main problem is lack of proper support / guidance, even though many say diet works wonder.
I am still wondering what is that I am missing in diet.

Regards.
Jay

Hi, Jay:

I advocate aggressive supplementation also, and especially find minerals and EFA oils the most helpful: Calcium, magnesium, copper, zinc, and EVOliveOil along with Bcomplex. To get out of flares, I strongly suggest borage seed oil--and a lot per treatment like six capsules evening before retiring. Then some wheatgrass juice during the day on empty stomach--6oz would be very sufficient. These things should help eliminate the residual packets of inflammation and it can take many months of strict diet to return a joint with fibrosis to normal. Professor Ebringer said we might be able to turn the clock back about two years by addressing this fibrosis which means very strict diet.

If You post what You are eating, it will be helpful. There are sources of bad dietary starches we too often are unaware of like mangoes which are not fully ripened and many other fruits.

Also, healing the gut will require enough vitD, lysine, vitC, niacinamide, and vitE.

The approach that is sometimes difficult is to both heal the tract and avoid getting too much starch in the diet.

I ensured the reduction of the nemesis germy by using antibiotics, and my protocol is available as a guideline for everyone who is interested in this approach--I think we have discussed this before but not just for Your benefit in my signature are some links to dropbox write-ups.

Just be mindful of the diet and Carol Sinclair's book is very helpful in this regard, also keep a diary of how You react to meals and whether one thing affects You more than another. Andrea's site, Forest and Fauna, has some recipes for NSD breads and comfort foods.

HEALTH,
John

Hello John,

Thanks for your suggestion. I am listing my diet details.

Breakfast : 4 eggs (boiled or omelette or scrambled with 1 yolk only), 2 tsp ghee, black tea

Lunch and Dinner : Cooked vegetables / green leaves : Carrot (raw also), bottleguard, cauliflower, cabbage, raddish, capsicum, mushroom, Spinach : 200 gms
Two eggs (white only) and 1 Apple
Mor 11: 00 am : coconut meat with jaggery
One day in a week : Chicken / Mutton – limiting to reduce iron level
Avoiding : Fish & Tofu because of iron level

Others items during the day : onions, tomatoes, cucumber,
tender coconut : twice a week
Less quantity some times during the day : jiggery, dry fruits (almonds, dry grapes - limiting to reduce iron level)
Apple : 3 -4 /day (total)
Grapes : 400 gms /day
EVOO 4 tsp after dinner but not regular
No diary
Apple (New Zealand – Royal, when tested with Iodine colour did not change much compared to others)
I have purchased Bragg’s ACV, but yet to take regularly. I find apple & carrot colour did not change much comparatively when tested with Iodine. I feel I am following a strict NSD. But what helds back the improvement is not clear. I am puzzled. I have taken wheatgrass juice (from powder) in morning empty stomach for 15 days. But stopped since, I find no change. Other supplements I will consider. I went thro Sinclair’s book, I feel it is liberal and I am bit strict. I am following this despite some resistance from my family, expecting improvement. Some thing restricts from improvement, which is not clear. Someone suggested split green mung gram which has very little starch. I am yet to try.
Advice for further improvement.

Regards.

Jay

My primary care Doctor is convinced after being with me from the start. He tells people of my success when he comes across people that present as I did. He also checks for that great gene we all have nowadays. The allergist that I was once a regular patient of during my sinus surgery and allergy hell days tells patients about me and my success. I have been called by more than a few of them. Diet is not for everyone it is a hard road but I have had more success than I could ever of hoped for.
ETTE
Darrel

Hey Jay,
I can tell you about a diet which worked for me when I started on the NSD. Combining the information from here alongwith the AutoImmuneProtocol, I figured out that pretty much everything was unsafe or fringe, especially if you happen to be a vegetarian as I am.
All I took for close to about 40-50 days was two bowls of boiled vegetables for both lunch and dinner. The vegetables rotated between gourds,zucchini,okra,cabbage,cauliflower and maybe capsicum. 10 days into my diet, I started lettuce/cabbage & cucumber for breakfast. I started this diet after a one day water fast and probably water fasted another 2-3 times(one day at a time) while being on the diet.
Some days into my diet, the inflammation had reduced. When I ended the diet, I was totally inflammation free.(I was inflammation free a lot earlier, but was hesitant to alter my diet which had worked wondrously for me).
I lost more than 15 kgs of weight during this period even as I did minimal work. Energy and muscle devoid, I had to work on my ability to do things and increase my range of motion and also gradually introduce other food groups to my diet. Many roadblocks later(usually diarrhea whenever I introduced new stuff or started consuming larger portions. Diarrhea was always accompanied by weight loss as I used to eat extremely thin for the next 4-5 days), I was ale to successfully reintroduce diary(250 ml milk,150 ml yogurt daily), eggs(1 per day), fruits(5 servings a day) and nuts(soaked almonds,walnuts,figs and currants). I was even tolerating rice and wheat without any inflammation. I woke up with some degree of stiffness but an hour of stretching and simple exercises would set everything alright. All this while my ESR and CRP were below normal levels. Gradually, I was able to put on a bit of weight, though still about 10 kgs short of what I was when I started the diet. Wanting to further increase my weight and my protein intake, I thought on introducing chicken, which(chicken curry) flared me the next morning itself. Unwilling to get back to the diet I first started out with, as I no longer have extra kilos to part away with, I am still struggling with the inflammation despite removing(or so I think) all the starchy and fringe foods I was earlier consuming. If nothing works, I'll go back to do the diet I started with.
The bottomline is - if you've got extra kilos to spare or don't mind losing some, you might consider what worked for me. Though with hindsight, that was a brutally restrictive diet and you could afford to add a few things to it.

I totally second you on lack of support and guidance except through online forums, even though KickAS has done a stellar job. As a fellow Indian, you could PM me your number and we can get in touch with each other.