Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; 3 months on NSD no change

Hey guys, I've been on a strict NSD for 3 months now, with a small number of slip ups here and there. I haven't seen any changes at all unfortunately. My AS, or whatever is wrong with me, is highly reactive to exercise/stress on my lower back, even doing a set of push ups will now trigger me a 2-3 week flare and this hasn't changed at all on the diet.

I've been on a ketogenic diet (no sugar on top of no starch/dairy) for 3 weeks which has been extremely hard, I've lost a lot of weight and was thin to begin with.

Any suggestions on anything to try? I've mostly been eating: eggs and bacon, avocadoes zuccini and cucumber and asparagus, fatty meats with mayonnaise, and nuts / things made from almond flour.

p.s. does anyone have any experience with sugar alcohol sugar replacements like Xylitol?

Thanks very much,
Mark

Hi Mark,
Unfortunately zucchini and avocadoes may be causing issues. What kind of nuts are you eating as some are starchy. The mayo can be problematic for some as well. I know how difficult it can be in the beginning to find "safe" foods.

For breakfast I usually have some kind of meat with spinach, cooked in coconut or olive oil. Lunch is usually a salad with tuna or left over meat, olive oil and lemon for dressing. Snacks are lara bars that I have found to be safe, raisins, almond butter, grapes. Dinner is usually meat with spinach, kale, or broccoli. For treats I make homemade icecream with coconut milk and use honey or maple syrup as a sweetener.

Betty Rawker on this site has a wonderful cookbook full of recipes. I have found it helpful to google starch free for ideas. Following a paleo type diet has helped but being careful to also eliminate the starch in the recipes is key.

I make a lot of muffins in a mug. 3tbs of coconut flour, one egg, pinch of baking soda, tbs of coconut milk and some honey drizzled in. Microwave for 2 min. Yum

Hi, Mark:

Regret Your lack of response to NSD! Although this is rare, it does happen. One fellow had great results fasting (so proving the food connection), but had no luck with the NSD also. Turns out he had excessive levels of heavy metals and after this was addressed the NSD began working. I don't have any explanation, but found a paper where amalgam (silver) tooth fillings seemed to make gut bacteria more hearty and resistive.

The Road Back Foundation has a local physician referral, if You wanted to try antibiotic approach (these would help keep weight on, btw) in addition to NSD that was so successful in my own case.

Regret sugar alcohols are very odd and can cause production of considerable amounts of gas. If You are fighting candidiasis at same time, I have been told that it is better to use the "heavy artillery" anti-fungal drugs, and attack the cause of AS in stages of purging--clean slate to repopulate later.

HEALTH,
John

As Lulu said avocadoes and zucchini could be a problem also eggs can be a problem for many. Some things you react to might only become apparent when you are on such a restricted diet. Nuts is another, too many is not good as they are inflammatory and can upset the balance of Omega 3 to 6 and stop absorption of other nutrients.


I would start by eliminating eggs for a while and looking at the quantity of nuts you eat it shouldn't be more than a handful a day (difficult I know). Also as Lulu said Andreas cookbook is wonderful for ideas.

Its difficult when you have been restricting yourself for three months. I know I have been through the loop the past year realising I must react to something I eat and trying to find out what.

Have you tried the autoimmune paleo approach which cuts out eggs, nuts and nightshades too. Eat plenty of good fats to try and keep the weight on such as coconut oil olive oil and ghee (homemade is easy). Google Terry Whals and her 9 cups a day recommendation split between categories of fruit and veg. That may help and there are lots of suggestions for recipe ideas online.

The other thing to look at is you vitamin D level, that is important for your immune system. Also how is your iron level. The body is so complicated if one thing is out of balance it can affect everything else.

I found when I lost too much weight it made exercising worse I would pull muscles/tear ligaments so easily and they would take forever to get better. I think perhaps the fact that I discovered I was mildly anaemic might have had something to do with the lack of healing. Have you tried gently swimming. Its non load bearing and I have found it great to build up muscle tone as I have regained some weight I lost.

Also as Dragonslayer said it could be that you have a heavy metal load.

You have come so far just take a step back and have another look at what you are eating before giving it up.

x

Hi, thanks for the responses all.

I was actually doing OK on the NSD but going sugar free after I had no improvement and not being able to eat fruit has been really really hard. One problem is my disease is still coming in flares that respond to physical stimulus rather than a background rumbling of inflammation so I can't tell if something in my diet is really affecting me in the short term.

The problem is there are so many different things that could be causing me trouble and if I remove eggs, nuts, avocado and zuccini and don't add anything else back in I'll starve. I already feel like I'm starving now, you can see the ribs on my sides. Also I've been nightshade free for a few weeks apart from a small amount of onion perhaps once a week.

Is fruit and sugar (i.e. maple syrup, not pure processed sugar) a common problem for some people or do many people on LSD/NSD not have problems with it? If it's not a common problem I'll try adding them back in for calories/taste and cutting some other things out. The thing I'd really like to add back in is dairy but I know this is a problem for most people so I won't.

DragonSlayer: I don't have any dental fillings at all luckily although I did previously eat a lot of tinned tuna (not as bad as fresh tuna but still). Most of the stuff I look at online about removing heavy metals seems to be on very alternative sites that don't seem very scientific, can you remember how the person you spoke about was able to sort this out? Thanks very much.

I will look into the autoimmune paleo approach Ally, thanks for the tip. And thanks Lulu for the mug muffin idea, I'll try that if I decide to add sugars back in for sure.

Thanks for all the help, I just need to figure out which things are going to be in and which are going to be out for the next phase, cheers.

Mark

I would add back in some fruit but concentrate on berries if you can. They are lower in sugar and very good for you full of antioxidants etc. If you haven't had sugar for a while you will find everything much sweeter.

Terry Wahls recommended eating them with fat such as coconut milk. I make my own coconut milk yoghurt which is easy to do and provides good probiotics too. I have my berries first thing in a smoothie with kefir made with raw milk again so easy I had put off making kefir for a long time because I thought it would be hard to do. The kefir is fermented for 48hrs so that the lactose has gone. It is the only dairy I have at the moment.
I have found that I don't need the sugar so much however if I do have something sugary then I cant stop eating it so its not in the house! I will add maple syrup if sugar is required but I am also experimenting with using cooked apple sauce instead.

I would recommend Andreas cookbook Pure and Simple Paleo.
http://www.forestandfauna.com/ She has some fabulous 'bread' recipes in the book that are savoury and her grain free bagels are egg free and not nut heavy. There are also recipes in her website.

Also a good snack to help keep the weight on is this recipe from Paleo parents
http://paleoparents.com/2014/cranberry-orange-bake-coconut-bars-real-life-paleo/ I make this a lot I use a mixture of berries for the topping instead of cranberries and reduce the amount of 'sugar' to taste. I have used honey and maple syrup.

I would also recommend reading Terry Wahls book.

When I was being so strict and lost too much weight I found it compounded everything so I decided to just eat everything again except dairy I think sometimes restricting too much doesn't help either. Maybe try cutting eggs out for a while but continuing with everything else and if there is no difference then try something else?

Hello Mark,

Look at your "strict" list, I do not consider it "strict" at all.



Avocadoes always put me in a flare, bacon is another one to watch. Some here (not me) also have issues with asparagus.

I am also leary of almond flour (or any flours people use here) when you want to be "strict".

I would consider your diet more Low Starch, I probably would not see any results with your diet either.

The almond flour and asparagus I would introduce only after you see results with diet.

Are you still taking medications for your AS? Maybe combination of medications and this diet would bring results.

I have been No Starch since 2002 now... now I can tolerate many items I could not before (cashews, peanuts in moderation, almonds, ice cream, even 2-3 bites of quinoa once a week).

Best,

Tim

That's fair enough Tim, but the problem I have is everyone seems to have their own version of the NSD and things that trouble them are different and often contradictory. I had to pick at least a couple of things that have a decent amount of calories and keep them in.

I have a very fast metabolism and I can't get enough calories from fatty meat alone, I already feel close to starving on the ketogenic style diet. Are you dairy and sugar free also? What are your main sources of calories and what do you have for snacks?

I'm not taking any medication at all, just Celecoxib when I have flares. I have chronic acid refux and can't really tolerate any other anti-inflammatories unfortunately.

Ally I will check out Andreas book/site and look into making coconut milk yoghurt, thanks again.

Thanks for your help,
Mark

Hi Mark,

First I want to say way to go for giving this diet such dedication! I so wish I were reading that you were feeling great benefits by now. But I always tell folks I recommend giving the diet a full 6 months, as often times we have hidden starches or inflammatory foods in our diets, and it takes a while to sort them all out. I also believe it takes the gut, gut bacteria, and cells in our body a while to reset and rebuild. That said it usually seems like folks at least feel some benefits early on, for me it was kinda like a roller coaster up and down the first six months, but there was no doubt I felt increased energy and my gut inflammation, colitis, was finally calming down after many horrible years of gut issues.

I have been eating Low Starch 5.5 years, then I went to No Starch 4 years ago when I was finally diagnosed with AS, and then this past winter I did about 4 or 5 months keto, just to try it out. And because I wanted to drop a few pounds that I gained working a desk job again.

Anyhow, I learned that a super low carb diet, "keto" is not for me! I actually started to develop new health problems while eating keto, which were quickly resolved after adding carbs back into my life. After eating keto for a few months it all backfired and I developed VERY dry skin, like my face looked like it aged 30+ years especially the super dry skin around my eyes, I broke out in a rash for the first time in my life (google "keto rash" as it happens to many), my sleep suffered, I started getting bouts of painful heartburn after eating, and I got crazy constipation, ALL of these issues were NEW to me and came on when I tried eating keto. I suspect I was creating a histamine intolerance in my body via keto eating by starving good bacteria and leaving my system that much more exposed to external triggers. (Gosh its kinda embarrassing talking about all this so publically, but hopefully sharing my experience will help someone else out there going through something similar!?) Seeing my skin, our largest organ, suffer like that told me that I was not properly nourishing my body! Thankfully my skin looks great again after carbing back up, and the other health issues went away too. Some do report feeling better super low carb, but I have also met folks who like me did not do well with it. I personally believe it is important to include starch-free carbs in our diets to encourage a wider variety of good gut bacteria, as some of the good gut bugs like carbs too.

I believe the key to health is nourishing our bodies (and our gut bacteria) with fresh nutrient dense foods. For me restricting my carb intake in addition to not eating starch was actually putting my body through stress. Overall I still eat less carbs daily than the average person on the Standard American Diet, but I don't obsess or restrict them. And I love eating lots of good fats too, like coconut oil, goat milk butter, avocado, olive oil, cocoa butter/homemade chocolates, using rendered pastured pork fat in cooking, etc.

But all that said I do know folks who eat super low carb + low starch and swear by it. So I do believe a keto diet works great for some people.

As for the foods you listed, most of them are totally safe in my current diet. I eat lots of avocados, pasture raised eggs + bacon, cucumber, asparagus, onions, but I don't eat zucchini as it often tests too starchy with iodine, especially after being cooked. And I totally enjoy starch free breads, waffles, crepes, and goodies made with almond flour, walnuts, watermelon seeds, sesame seeds, chia seeds, etc. I just rotate through the ingredients.

I do not use xylitol because it is so deadly to dogs, and we have 3 of the sweetest dogs in the world. But I do sometimes use erythritol (from Non-GMO corn) and lakanto, and I introduced these sugar alcohols to my diet back during my keto experiment. I use them on occasion when I feel like pigging out on "starch-free" chocolate cake without the sugar overload. I completely avoid refined cane sugar and corn syrup 100% as both of those really mess up my body. But I enjoy honey, maple syrup, dates, and low starch fruits with no restrictions.

I really hope you start to see some improvements!

PS: Lulu + Ally - thanks so much for the sweet notes about my recipes! xx

I had some of the same problems long term on NSD. Constipation was the worst! And bad sleep kept me on edge all the time. I will do anything to avoid these problems. Adding clean (natural foods) sources of starchy carbs fixed me up very quickly. I don't even think you need that much of them to make a big difference and it is possible to stay ketogenic if you desire to with low amounts of carbs .....especially if you eat the carbs after intense exercise when they can be taken up to replace lost glycogen in the muscles. I think starchy carbs certainly have their place.

I was a very skinny 83 kgs at 6"2, now I'm 100kgs and I'm not fat either.

Are you allergic to bee stings by any chance Bettyrawker? I am and I often wonder if some of my problems are histamine related.