Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; AS Recently-Miserable

Hello Everyone,

There are a lot of things I want to discuss here, I dunno where to start...I want to discuss the diet, and I have a lot of questions to ask.

I will start off with a bit about myself, so when I was 21 yo I started getting major pain in the nerve at the left buttock areas...it was so painful that I couldnt switch sides in bed when sleeping, and this pain would switch sides, but mostly left side...then a year after Uveitis, fast forward few years after (btw during those years I kept having the same pain and it would go on and off) andyways, when I was 26, I started getting lower back pain when am sleeping. I reached a point I couldnt sleep well...went to the doctor, and they did mri for hip and SI, showed nothing, and he said its all in my head.

I excepted the pain, and lived with it, and thought maybe its because of the drive i used to do (every weekend I'd drive 5 hrs one way straight and back 5hrs same thing)

5 months ago, pain reached a point where I couldn't take it anymore, went to the doctor, did xray and blood tests...doctor asked me to do HLA B27, and tested positive. A week after I had the worst neck pain in my life, my upper body was all pain. I couldn't cough, sneeze or do anything. Doctor referred me to a specialist, specialist spent 2mins and said you have AS, and put me on light NSD...I chose not to take any drugs...I looked into the diet thanks to kickas

I started a strict diet immediately, and felt relief within days, still had pain, but at that point I thought maybe diet is the answer..

right now, I don't eat any of the following: rice, bread, potatoes, onions, garlic or any dairy...even sometimes chocolate, and ice cream (dairy :-( )...I feel relieved most of the time, but when i try new things first I get pain in my leg joint in the left side, then goes to right side, then during sleep I have lower back pain...

I do get days with no pain, but am wondering about the stiffness because before the diet for 2 years every morning I had stiffness, now its no stiffness, but still some pain during sleep. Can someone discuss this? Does that mean the diet works? I'm asking because am still not 100% sure yet.

My other concern is weight loss, is that normal? Within 3months Ive lost 17 pounds. I was about 164 pounds before. When am on this diet, will the body reach a point where it stops losing and maybe gain? or will I always stay thin when am on this diet? Did anyone have this issue starting this diet?

My daily diet is as follows:

Breakfast
2 eggs with some meat and some mushrooms with tomatoes and orange juice

lunch
chicken with veggies and orange juice

dinner
chicken or fish or meat with mixed veggies and fruit salad after with orange juice

snacks
just dried fruit, such as dried figs, and raisins.

my diet does not include any nuts, and the mixed veggies dont include onions or garlic as am not sure of these yet, also still need to test dairy. I know I drank milk one day to try it and had some pain when I was sleeping.

I have tons of other questions too, am just in a state of shock and worried about my future. Anyways sorry for the long story.

I should mention that before the new diet my regular diet was rice everyday, pasta every other day for dinner, and pizza every other day....all of these are eliminated now.

Hi Eska,
From your post it sounds to me that you are responding well to the diet. My improvement was immediate, and yours seems to be a quick response, but bear in mind others take may months before getting any noticeable change.
Remember too that not everybody responds the same way to the various foods. I for instance, can tolerate small amounts of banana and tomato, but on the other hand I don't tolerate sugar well - even natural sugars in stone fruits and citrus for instance causes gut and peripheral joint issues.
I would encourage you to keep trying, and keep experimenting, until you find a diet that works for you, and limits your pain as much as possible.
Looking at your food intake, I personally would have trouble with orange juice, with raisins and figs - so don't be afraid to experiment with removing at least temporarily even supposedly safe foods.
I've found berries are good for me - probably because most (but not all) berries have a low sugar content.
Keep up your efforts and the best of luck.
Regards David.

Thanks David,

just a question on weight loss, is it common? I've lost about 17pounds. Also is it possible to gain it back? How long does it usually take before body starts using protein and fat as source of energy instead of carbs?

But something tells me it makes no sense, because from day one I started loosing weight, which means body was using fat as source of energy from day one...I'm asking because I see a lot of people saying you have to get the body used to using protein and fat as a source of energy, and people say it takes time, but if thats the case then why is the body loosing fat so quickly?

one last thing, just wondering what sort of nuts is usually safe to consume?

Thanks.

Hang in there. David hit it right on the head,You need to sort through and figure out what you can eat. I lost a lot of weight when I started. I also had no energy. I turned the corner at the three to four month mark. My energy levels came back and I was able to return to an active life. I went from not being able to walk a hundred yards to following my dogs in the mountains again. The weight slowly came back until I reached pre diet levels. Wish it would have stayed off but oh well.
ETTE.
Darrel.

Hi Eska,

I think weight loss in the early stages is the norm. I went from 75kg to 60Kg in a bit over a month (about 170lbs to 135lbs - and I'm about 5'11") and unlike Daryl have stayed at the lower weight. My brother on the other hand has, like Daryl, come back to his pre-diet weight - so maybe that varies from person to person. I'm not worried about being very thin but I know others do get very concerned with weight loss.

The weight loss would be due to the withdrawl of the excess (usually processed) carbs - the carbs normally are converted to body fat. Dietary animal fat on the other hand is utilised by the body as a source of energy and not stored as fat reserves. So increasing fat intake (rather than discarding it) is one way to keep up energy and body weight. For instance, I have 3 lamb chops for breakfast each morning, and I drink the fat collected in the drip tray rather than discard it. By the way, I think cardiologists are starting to understand that it is the excess carbs and not animal fat that drives heart disease.
Nuts I consider as a fringe food, that is, probably OK if limited to small portions. Two or three almonds or cashews a day is OK for me, but I have problems if I eat half a packet. I've got to the point where I don't bother with nuts at all.

Hi Eska,

Re: weight loss - I had a massive carbs and sugar intake in my asymptomatic days, and became over-weight once I had to stop playing sports due to the pain and stiffness progressing.

When I changed my eating habits I dropped 30 lbs very quickly, and have kept this (for me) normal weight for the past 4 years. I'm back to the weight I was when I was fit and "athletic" I'm certainly not "athletic" anymore, but almost content with what I can do.

The weight loss is very normal in this scenario, in my opinion. Larger portions, more frequent meals, and/or more good fats would help if you feel it's too much loss for you.

And like the others above say: keep experimenting - I still do, after four years.

thanks guys for the help, really appreciate it...from what I understand, everyone is different, and looks like my life is gonna be all about experimentation.

it just boggles my mind to see no real study on this...why is that?? why arent there researchers looking into diet? Now I wish I went into med field to find the cure myself..

why dont they make some kind of a drug that kills that one bacteria so the immune system doesnt get confused with it...I read that some people experiment on antibiotics. Does it work? Does antibiotics kill that bacteria?

Antibiotics do work for some and there are few strong advocates for their use here. I had problems trying do get a doctor to prescribe any since doctors usually don't regard AS as resulting from an infection. Also antibiotics are a fairly blunt instrument.
It is simplistic to think of the spondyloarthropathies as being 'curable' simply by removing a component or components of the gut microbiome. In reality the immune system is overreacting to components of the microbiome and that results in a dysbiosis in the gut.
But, looked at another way - the diet is behaving like an antibiotic treatment, that is, a dietary intake of increased protein / fat with greatly restricted carbohydrate skews the microbiome in such as way as to dial or dampen the immune system in the gut mucosa and in some ill-defined way this results in improved health and reduced / lesser symptoms.

Good job for sticking with the diet. I get a lot of pain if I eat tomatoes and orange juice....almost as much as if I eat grains.

have you heard of AIP..Autoimmune Paleo diet? Its like NSD, with some modifications.