Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; NSD Not working for me

Hi all,

I tried a search for this topic but was surprised I couldn't find anything on it.

I'm HLA B27 positive, and am not on any medications. I have back pain every night starting around 3-4am.

I bought Carol Sinclair's book and followed the principles in there and have tried several of her recipes. I have been on the no starch diet for three weeks now, starting Nov 4.

I am reading all nutrition labels and avoiding anything with starch or wheat. I had a regular lunch (containing bread) on Nov 9 and I had two slices of pizza for dinner on Nov. 20.

I haven't felt any better in terms of my back pain at night. I do know that I had flare ups on Nov 10 and Nov 21, the two days after I had bread meals. So if anything, being on the no/low starch diet has made things worse for me! Before, I could eat bread regularly and feel moderate pain. Now, when I eat bread, I have severe pain.

Any ideas? After Thanksgiving I am thinking of trying to cut out dairy, too. I really want to make this work.

Hi Soco11,

I am in a similar boat as you - I too, am HLA positive and seem to have difficulty truly figuring out whether or not the NSD works for me. I believe this may have to do with my difficulty even becoming diagnosed with AS. It may be that because it is in such early stages that there is no concrete evidence that I have AS...However, I have a lot of symptoms leading dr's to believe so.

I decided 3 months ago to give NSD a shot. I have no felt a significant difference in pain, but I think I have improved a tiny bit. My advice would be to cut out dairy and follow the NSD as strict as humanly possible. Keep full by snacking lots on no starch fruits and nuts and healthy fats. My diet is very high in healthy fats from fish, nuts, certain fruits (Avocados), etc. I think you should be very strict for a long period of time to really find out if its working or not. I am still trying to give it time after 3 months!

Try not to cheat for as long as you can. It will take time for your body to adjust to a new diet. Unfortunately it isn't something you will notice immediately - but maybe! I don't have the same pain that you get in the night - rather - my range of motion is stuck and I have a dull aching pain whenever I am awake. Days seem very long and I still don't know how to cure the pain...this is why I'm pretty much convinced I have AS and will be trying out Humira soon. I've had to quit my job and all my sports and hobbies almost. I need relief! So i'm hoping Humira will help me. But diet can help too.

Eat heavy on the meats and fish - I eat lots of fish, chicken, steak, burgers (no bun), and lots of veggies too. Try your hardest to fill up on these foods at your thanksgiving dinners. Also use the starch lists on this site and bettyrawkers recipes (this member has tons of great ones). When you are in the pain you experience, you would do anything do end the pain, right? I sure would. Which is why you need to stay disciplined to know if it works for you.

Best of luck to you!
Paul



me:
-NSD
-Cyclobenzaprine muscle relaxant, tramadol pain medication, advil, rub-a535,
-hot-tub/swim daily

To piggyback on what Paul said, if you find yourself losing a lot of weight on the diet due to lack of grains/breads/flour, I suggest adding rice to your diet as it seems to be the most agreeable high-level starch people can accept. You can read more about this at https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=476559&page=1. I personally saw a big gain when I added this starch back into my diet.

I would strongly suggest that you try an elimination diet. Start by doing the 3 day apple diet. I felt a big difference by the third day of the apple diet, and I knew then that the NSD had potential. After those three days, I ate only meat, fruit, vegetables. I slowly added one item back at a time. Many people have different reactions to different foods. I've been doing this for 3 months now. I tried rice like Brian above mentioned two weeks ago for the first time, but I flared up miserably for 2.5 days with only 3/4 cup of rice. I was truly disappointed as I really feel like I need starch in my diet, but I want to make this work. I can stand nuts in small amounts, I flare only slightly even to walnuts which everyone here seems to claim are safe. However, I have flared only slightly on less safe nuts as well, like pecans (just tried this weekend), and almonds (tried last week).

However, I spoke with my doctor and he said that if I can get relief from a diet, then go with it. He said medication should always be a last resort. The side effects of medication can sometimes be worse than the initial problem they are being taken to alleviate. He mentioned Lymphoma as just one in particular with Humira (and all related drugs in this class). The only side affect of a diet is hunger (although after losing an intial 20lbs, I've stabilized at about 148lbs). My wife says I get Hangry (hungry + angry, hehe) in the evenings. It's probably a combination of the diet and getting tired.

I know the big side affect of not following the diet is inflammation and pain, which is something that I have dealt with for 20 years without knowing a "cure". Now I know the NSD does work, but you have to figure out what makes your body flare. Everyone is different.

Ever since starting this diet, I've been worried about the holidays and missing out on my favorite foods, snacks. Now, that I know the diet works, I've just decided to say the hell with it for the Thanksgiving dinner. I know I'll be in pain for a few days, but that's better than the side effects of the drugs. You can't just say the hell with it and not take the drugs for a day, those side affects are lasting.

I really hope you find out what makes you flare by trying an elimination NSD diet. This site has been a wealth of information.

By the way, it's not only starches that affect us. I'm going to get some grief from some over this I'm sure, but I discovered coffee was bad for me. During the elimination diet, I even gave up on coffee. I tried it after two weeks without in the morning and was flaring by dinner. I've done this a couple times as a test and each time the coffee flared me up. I swore coffee off and haven't missed it since. I don't miss the jitters anymore. I also get some mild flares from soda, I think it's the caffeine content messing with my gut, but I'm only guessing.

I don't think 12 days is long enough to know if it's having an effect on you. I know i felt a difference in the type of pain within a few days, however it didn't get better straight away, I had what i think were "die-off symptoms" with some old aches & pains resurfacing or getting worse first.
Then it got better.
I know some members have had to go several months before knowing if it was working so do not despair just yet !
However if you're serious about doing this I'd give up the cheats, as I think you might be undoing the good work you're doing, and therfore can't know if it's working or not.
The best way to be sure would be either to do a fast as Zentuhl suggested, or keep a very simple diet for a little while, cutting off what ppl are mostly intolerant off (starch of course, dairy, eggs, sugar, caffeine, nuts, soy...).
Maybe try having meat/fish + veggies for a few days and see if it makes a difference.
It is hard work at first, but you'll see you'll figure it out !!
All the best,
Marion

Hello there,

Dairy may be the issue... post exactly what you are eating, maybe something else is sneaking in that is causing some issues.

There are some foods I call fringe foods that some can eat while others cannot... maybe some of those are causing an issue.

I am not convinced diet will work for everyone... but keep asking questions and maybe we can be some help here to find some answers.

Tim

Hi all,

Thanks for the responses. Today I had 2 eggs and sausage for breakfast. Lunch was a pre-packaged salad from a supermarket, that contained grilled chicken, cheese, lettuce, avocado dressing, and bacon. I think the grilled chicken and the dressing may have had trace amounts of wheat/starch in it. I have some of my own wheat-free, yogurt based dressing that I use sometimes. I had two clementines as an afternoon snack.

Dinner will probably be chicken sprinkled with almond flour and eggs, and broccolini. This is a typical day of food for me.

I usually have something sweet after dinner, like flavored greek yogurt or sometimes ice cream (I always check the labels for wheat/starch).

I would have hoped to feel some sort of effect after being on for 21 days, especially hearing how about how so many people felt better after just a few days.

I did have a 24 hour fast during the past 3 weeks and even that didn't help my back pain.

I'm open to trying the apple fast but it doesn't sound very appealing. It will have to wait until after Thanksgiving. Going to parties and events over the next few weeks will be difficult to avoid wheat, as I'm not "out" about my condition and I'd rather tell everyone why I am avoiding wheat.

I'll keep sticking to it and report back. I hope I find a solution that will also help someone else.

Be careful about hidden starches if you really want to test whether or not NSD is working for you. For example sausages can be thickened or binded with starch. Every time I tested breakfast sausages with iodine they turned black straight away. Do you test your food with iodine ? Same with supermarket salad, there is a good chance the chicken will have all sort of nasties on it to preserve it, and there is a good chance some of those will be starchy.
If you want to really get to the bottom of it maybe wait till after thanksgiving (no idea when that is, is there long to go?) if it'll be easier for you and then try and do a fast (apple, water, juice, whatever rocks your boat) for as long as you can manage (if it's a first one if you manage 2 or 3 days it's quite good, and you could see a difference in inflammation). After that try and have as simple a diet as possible for a couple weeks (no processed food, starch, dairy, sugar, caffeine, alcohol), just buying fresh meat/fish/eggs, fresh veggies and a little fresh fruit and cooking them as simply as possible. Might get a bit boring but it'd only be for a couple weeks and could give you a better idea of whether or not you see any difference in your pain.
Let us know how you get on !

Hello there,

From looking at your list... I would say it is more Low Starch, many here tend to be more strict.

If you want to see results quickly with NSD to know if works I would cut out the following>

- all processed foods, dressings. They typically will have some hidden starches
- Sausage/bacon - again... many have fillers
- Avocado - several here flare from it... others seem to do OK
- Dairy - several have issues with dairy
- Almond flour - half of the people do OK with almonds, others have issues.
- Borccolini? I have no idea what it is... sounds processed and therefore potential problem.

That would be my suggestion if you want to see if you respond... there are many fringe foods that are part of this diet... some can tolerate and others cannot for some reason. Your list above includes many of them and if you want to see if you respond to NSD, I would eliminate all of them and add back after you see improvement if you do at some time.

Many of the posters here that do well with diet know what foods they can tolerate and which they cannot... for someone starting diet you do not necessarily know yet.

I your food list I cannot eat avocados or more than 4-5 almonds without feeling it. Even yogurt at times can still cause me some issues.

When I started diet... first month I was extremely strict, but also had quick results within a week. I began adding other foods back afterwards and trying. I also had issues with energy at start, maybe from being so strict.

Best to you,

Tim

For me, it is the dairy rather than the gluten (or starch).

I'm allergic to casein protein in the dairy. Maybe other proteins in the dairy too; I still need to find that out. Maybe just cow dairy? I still need to get more testing to see if sheep and goat are OK. For many it is just the cow casein.

I'd encourage you to get food allergen testing done or try the dairy free diet and see how you feel.

The food allergen testing said dairy was through the roof for me, and eggs were a little bit. So also limit my egg intake.

For me, its two animal proteins that are the problem, rather than the plant proteins.