Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Confused about Carol Sinclair's book

I'm currently reading Carol Sinclair's book and now really confused. In her book she stated that those that are helped by the diet are usually HLA +. So, am I wasting my time if I was negative? I feel like she is saying in order to even have AS you need a positive blood test. Also, diet wise I'm feeling really frustrated. After reading her book it seems like cauliflower, broccoli,'carrots and a few others are not recommended. Even kale was suspect. I seriously feel like the list is getting smaller and smaller...

I am hla b27 negative and the diet helps me.

This is how I made my decision... I tried humira and orencia with little or not good results, I was allergic to remicade. I was taking metheltrexate, but developed all the nasty side effects and I could still not eat starchy foods while taking those mtx because I still felt ALOT of pain, so for me the meds were not a good choice, they made me anemic too. I thought when I was on the meds I could eat whatever I wanted, but I was wrong.
But they seem to work great for some people and maybe you will be able to eat everything you want to eat.
Everyone has to make that choice for themselves . I believe that for some of us diet can make us better. My labs went from a sed rate of 55 to 25 which is normal, it took 6 months and I am hoping it gets better, but I am so grateful for all the progress.

Maybe if you take a break from the NSD/LSD you will see if its helping you or not. I have done that in the past and it only confirms how much poor food choices make my joints swell...visibly swell. I also have a lot of pain when I eat foods on my fringe list. Maybe try eating whatever you want for a few days and see if it really makes a difference. Some say diet does not affect their AS. ?

I hope you feel better soon.

Hi, lulu12:



The word "usually" should be emphasized!
Ebringer did ALL of his studies exclusively on B27+ individuals to avoid confusion. He has since found many AS+/B27- individuals who respond to diet, some right here in this forum.

I believe that there is one cause and one mechanism for all AS cases, with different 'triggers' and different presentations (Hippocrates observed this a few years ago, too), depending upon the individual.

And diet is a complex issue; some things cannot be easily explained. One of our members had reduced symptoms by fasting, but that is impractical, long-term: Everything he ate caused increased symptoms. But it was the key--FOOD; eventually he found out he had very high heavy-metal levels and, after some chelation, the NSD began working for him. This is a very rare case, but how many of us have amalgam tooth fillings?

If a person is REALLY B27 negative (through ELISA or Fc tests; the serological test is too unreliable), and definitely has AS, it only means that they possess a different Osp structure which has a similar structure to B27; the disease mechanism (molecular mimicry) is identical.

The NSD has worked for B27 individuals (>90%) and MANY B27 negatives with AS.

I know that cooked carrots and cauliflower can trigger AS, but cannot find in Carol's book where she complains about broccoli and kale: Can You provide a context or page number? Some people react to things which are not starchy for unknown reasons; we just don't have the explanations yet, but in general certain food combinations can also be provocative ("Food Combining for Vegetarians," by Jackie LeTissier).

I hope that You can find something that works for You, and it might be worth pursuing an antibiotic protocol in addition to diet; this made all the difference for me.

HEALTH,
John

Please don't beat yourself up about this, or put so much pressure on yourself to "get it right". NSD is definitely worth trying, and can sometimes give really good results, but there are no guarantees that it will be the total solution - no matter how rigid you are about diet. It just doesn't work for everyone, and even when it does work, there are people for whom a low starch diet (which is much easier) gives as much benefit as a strict NSD. You are only going find that out by trying. Most folk seem to see it as something they can do themselves in addition to conventional medical treatment, not instead of. If you want to try, you have a range of choices:

If you want to go really strict NSD, then you can't get away without buying a bottle of iodine and testing every single thing before you eat it. You may also need to consider what is in the pills or supplements you take (most have starchy fillers of some kind). It will be a very restrictive diet - theres no getting away from that.

If you want to just do your best with a "common sense" NSD, then you absolutely avoid all the obviously really bad stuff (grains, starchy veg), and compromise a bit on the kind of things that may have very low levels of starches in, as well as finding out whether that particular fruit or vegetable that might be starchy is better eaten raw or cooked (cooking changes starches in a lot of things).

If you want to make it easy on yourself you try low starch first (avoiding all the obvious things like grains and obviously starchy veges) and see if that makes any difference first - then when you get used to that you can decide whether to be more restrictive.

And, remember that if you do flare while on a low starch or NSD, then it may not be a diet slip-up that caused it - it may just have happened anyway.

Just do your best, and do what makes sense for you. You can't do any more than that.

Thanks everyone for the replies. I sure hope I'm not going to find out all foods bother me. John I was on antibiotics for a year prior to this as I was diagnosed with Lyme. I had an awful time and an increase in pain. Of course those in the lyme community would say I was herxing.

Hi Lulu,
I think for Carol, the whole gene marker was just an a-ha moment, a piece of the puzzle finally found to put all her agony of ibs into the whole picture.
Carrots as a root vegetable are starchy, yes. Leafy green vegetables such as kale fine as far as I know!
Best of health to you,

Thanks. In her book chapter nine, where she helps you get started on the diet is where I saw it. She has you start off eliminating the obvious starches first and then if symptoms persist you eliminate more groups. The last group is the Vegas which included kale and broccoli. I worry that's where I am and if that's the case and I have eliminated all that is listed what will I eat????