Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Ditto on the NSD alone not being effective

Like airman, I'm coming to the conclusion that the NSD alone isn't effective for me. I started the NSD 13 months ago and eliminated dairy a couple months after that.

For the first six months on the diet, I never cheated, not once, though it did take a couple of months at the beginning to find all of the hidden starches in my diet and eliminate them. Twice, I've done a two and half day apple fast and I didn't notice any difference in my pain when doing the fast or immediately after.

Three times since last February, I've gone off the NSD for a couple of weeks to see what would happen. Each time, for the first week to ten days, I noticed no difference in my pain levels. After that, I suddenly get much worse. I've learned that it takes about three weeks back on the the NSD to get me back to baseline.

My perception is that I have two kinds of pain. The first kind happens when I eat starch. This kind of pain is unrelated to any activity that I am doing. It comes and goes and it has favorite spots which have varied, but include the Achilles tendon, all over my feet, just above and below my kneecap, my SI, my triceps tendon (just above the elbow), all around my hips and some other places are effected more rarely. All of these places except the tricepts tendon are included in the list of enthesitis locations in the emedicine article on Undif Spondy. When I'm not eating starches, these places don't hurt much.

Then there are my chronic spots. These spots act more like injuries, meaning they become painful with overuse but aren't much effected by my diet. Since I've had tendinitis in about 30 places in the last three years, I won't bother to post the long list. None of the "injuries" has fully healed. What tends to happen is a tendon or ligament will suddenly become injured when I've overused it, though for me "overuse" means I've used it a little more than usual. I "injure" insanely easily and my injuries heal extremely slowly.

On the NSD, I continue to get new "injuries". This summer, it was my pubic symphysis, costochondritis and the base of my big toes. With each one of these, I can point to some overuse, but the kind of overuse I'm referring to would never injure a normal person. These happened even though I was on the NSD.

The last time I went back to eating starches was about a month ago. The rheumy ordered an MRI of my pelvic area to look for "objective evidence of enthesitis". If he found that evidence, then he would diagnose me with AS and consider starting an anti-TNF. I decided I needed to do what I had to do to have enthesitis show up on the MRI, so I ate normally for two weeks prior to it.

The MRI, done with and without contrast, showed no evidence of inflammation or enthesitis, though I have pain at my greater trochanter (outside of hip), ischial tuberosity (sit bones), iliac crest (top of hip bone, on the side), SI and pubic symphysis (where the pubic bones meet in front). How can this be? How can I hurt in all of these places and have nothing show on an MRI?

The rheumy doesn't know what to do with me, so he referred me to another rheumy in another city who is an AS specialist. I see that rheumy next Friday.

Anyway, I'm stumped. I don't know exactly what is wrong with me and I'm frustrated because the NSD doesn't seem to touch my chronic "injuries" and doesn't prevent new injuries. However, the NSD does prevent the random pain and stiffness I get.,

Like airman, I'm trolling for suggestions and ideas.

Karen

Hi Karen,

SO sorry you are having these difficulties getting a diagnosis. I wish you could see my rheumy -- he poked around at my enthesitis points and declared it enthesitis. I do have an MRI that says there's inflammation, but he's also using common sense and a trial of sulfasalazine and fish oil, rather than being married to diagnostic testing. So sorry!!!

About the NSD, I've been doing a lot of reading on the role of diet in inflammation in general, and it seems like starches cause pro-inflammatory chemicals to be released in the body (for example, if you look at grass-fed versus grain-fed cattle, the grass-fed have more omega-3 in their fat, which is anti-inflammatory, while the grain-fed have omega-somethings that are pro-inflammatory. Many people believe that one partial cause of an increase in inflammatory diseases worldwide is the grain-fed cattle!). I'm still not convinced about the klebsiella thing, but I DO know how my body reacts in general to certain foods, so I am not here to start a dialogue about which theory is correct. What I AM trying to say, and I do have a point , is that you might Google anti-inflammatory diet and see what sorts of things you can ADD to your diet that might help. Turmeric is supposed to be a beneficial anti-inflammatory, fish/flax/borage/evening primrose oils, and lots of other things, I'm sure.

Sadly, even an anti-inflammatory diet won't fix old injuries. I totally get the easy injury thing; I am the same way. I really hope you find some answers!!!

Take care,
MB

Karen,

I've tried the no starch diet several times and found no relief. I probably didn't give it enough time, but I probably never gave it enough time. You seem to have been on it a while. It works for some, it doesn't for others. As far as not finding inflammation, it can go in cycles and you can still have pain when from the damage with no active inflammation. Best advice I can offer is hang in there.

Jeff

Molly,
Yes, this no diagnosis thing is driving me absolutely nuts! Maybe this new rheumy will have some answers for me, but this is rheumy #4 and I've very nearly given up on hoping.

I do take fish and borage oil, but I could look into more anti-anti-inflammatory foods and supplements. The problem is, if I'm on the NSD, it's hard for me to tell what is working because all that hurts is my chronic stuff and nothing seems to make a difference for that... but maybe something will.

Karen

Jeff,
I think an MRI would show damage from old inflammation, right? I'm not really sure about that.

The NSD definitely helps with that random, achy pain, but I still keep injuring myself and none of my injuries will fully heal.

I'm hanging in there!

Karen

Hi Karen, I wish I knew what could help you, but just wanted to say that I know you'll be able to find a way out of this pain. You are a seeker of answers and that will lead you to where you need to be! Wish I could serve you up a plate of NSD brownies!
Jan

Hi Karen,

Sorry to hear NSD does not work alone... I am of the opinion we are all so different it probably does not work for all. Many of us many have closely related arthritic conditions.

Have you been tested for food allergies at all?

I always like the book Alternative Medicine Definitive Guide to Arthritis to explore other possibilities.

Tim

How about a nuclear bone scan? Is that different to an MRI with contrast?

Hi Tim,
I have the Zamperion book and there are some good ideas in there. I'm not sure where to start. To be honest, I'm also feeling a bit worn out after a year on the NSD and a whole slew of other things I've tried.

The NSD definitely does help, though. It's just not doing enough. Raw sauerkraut is good, too.

No, I've never been tested for food allergies. It might be worth doing, but I'm not sure I could get my insurance company to pay for it. I'll talk to the doctor next time I see her and see where she can refer me. The physiatrist I'm seeing is open to alternative ideas, so she could be helpful.

Karen

I had a nuclear bone scan two years ago. It showed inflammation in the ankles, knees, hips, shoulders, elbows and wrists. No doctor I've seen seems to think that is significant. The SI shows up absolutely black on the bone scan, but I'm getting conflicting information about the significance of that. Some of what I've heard is that because of the angle, the SI is always black on a bone scan.

I swear, I'll be in a wheelchair before any doctor admits there is something going on with me. All this talk about preventive medicine and being proactive, but I don't see it happening with me.

Karen