Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; CascadeChris' NSD Journey

Not sure if this site will help or make things more confusing. Unfortunately what works for one may not for another. We all have different tolerances.
https://sites.google.com/site/cureankylosingspondylitis/no-starch-diet---food-list

Last nights dinner:
Simple unseasoned salad including:
Lettuce
Avocado
Tuna

Woke up this morning at about 6:40am. I think I had less back pain, but I can't be certain my mind isn't playing tricks on me. I had several apples Tuesday (which I found out have some starch), and Wednesday morning I think I had more relative back pain. Wednesday I ate no apples, and this morning (Thursday) I am hoping there is an improvement. But as I said, it could be my mind hoping for this result.

Swam 18 laps this morning.

Hello Chris,

Couple of comments...

Early on for me if I ate something starchy as I was learning like corn that I assumed was safe.. I felt it few hours afterwards and increase in pain was noticeable... pain went from 0-1 to 3-4.

If I ate something that was what I call fringe food or slightly starchy... I may have to eat it 2-3 times on consecutive days before I could notice the same level of pain increase.

One of those fringe foods is avocado.. for me, if i eat once maybe slight increase in pain but hard to correlate. But if I eat one 2-3 days consecutively, I will definitely notice increase in pain.

I have never had issues with apples however... probably another fringe food.

Fringe food - some can tolerate, others cannot. I do not know why... some of the ones I see posted more often...

Cauliflower, avocado, almonds, apples (other unripe fruit), carrots (cooked typically), dairy.

Best to you,

Tim

Thank you Tim. One question - how advanced was your total pain at the point you started the NSD? Your comments are greatly appreciated.

Hello Chris,

I was first on medications for my first 7 years after diagnosis of AS. I had to come off due to liver complications with medications.

My pain was controlled with my "miracle" medication of azulfadine. But anytime I had to come off of it (and prior to going on) I would consider may pain levels pretty high.

This was the height of my pain.. which when at the worst was SI joing and low/mid back:
- in morning had trouble getting out of bed. I would have to try and roll out of bed on to the floor. I would then crawl to shower and turn on hot water. Slowly got to feet and heat from shower help with all the pain.
- Could not climb stairs.. either on hands and knees or left foot first with every step (right SI was flared)
- low/mid back felt like someone took a bat and hit me in the back at times... also had a lot of muscle tightness.
- sleep at night difficult... I could sleep 2-3 hours at most before awaking due to pain, then had to go to LazyBoy to try and sleep for a bit with heating pad on... then back to bed after a hour in chair. I rarely got a good nights sleep.. typically had to take nap after work.

Tim

Thank you Tim for your answer. I have had one flare up in my life, which required me to roll out of bed and walk to the shower. Not pleasant. The rest of the time it has been low grade and chronic, as I describe below. I am glad you have found relief.

This mornings sleep and pain report
Started watching a movie about 9:45pm, reclined on the couch. In bed about 11:30pm. Woke up about 6am. Total time reclined was about 8 hours and 15 minutes. However, Getting up from the couch to brush teeth and get in bed makes it not quite the same as sleeping an 8 hour night straight.

Pain waking up was about the same amount of pain as yesterday morning. Pain is in my low middle back.

10/16/2014 Food Journal (yesterday)

Breakfast
- Steamed broccoli
- Walnuts
- Small piece of Salmon (the last of the salmon filet from a few days ago)
- Fresh green grapes

Lunch
- More broccoli
- Tuna
- More grapes
- Carlson's fish oil (a spoonful)

Dinner
- Salad: red lettuce with a little avocado, kalamata olives, chunks of chicken breast (organic, free range, and expensive! I have visions of these animals being raised in the gardens of a swanky hotel these prices. Maybe they even allow them to sleep in the beds at night!). Trader Joe's Tuscan Italian salad dressing. Again, I tested it for starch with iodine and it seems to be safe. I don't use much of it.

Snacks
Grapes, blueberries, walnuts and almonds, carrots and celery

10/16/2014 Exercise journal (yesterday a.m.)
18 laps in the pool yesterday a.m. Then about 5 minutes in the hot tub with gentle jets against my back. Those feel very good, and when I leave the athletic club I feel quite good overall.

A few thoughts about the next few weeks and how I will proceed with my diet:

I have a new baby coming in just two weeks, so I need to do a little planning and be realistic about what I can do while making a major lifestyle change with my new baby.

One of my big goals is to determine if I can control my pain and disease process through either NSD or fasting. Therefore, if I don't get some relief from my NSD in a couple of days, I am considering a 5 day fast before the baby arrives. After that, I may need to temporarily go back to a more conventional "Mediterranean" diet which I ate before, including fruits, vegetables, nuts, fish, some dairy (yogurt and cheese), and possible some moderate consumption of whole grains. Regarding grains, I may try to completely avoid milled flours and eat only whole grains slow cooked in a crock pot. I would supplement with 2 ibuprofen at 3 am each morning which allows me to wake up with minimal pain and stiffness.

I understand the klebsiella / AS theory as described be Alan Ebringer, so I don't believe the Mediterranean diet will starve the klebs. This would be more out of need for calories and ease as we deal with the demands of taking care of a new baby.

Any comments or suggestions are welcome. You are welcome to share support, but what I am really interested in are comments directed toward how to achieve the best possible results, or other things to consider.

THIS MORNINGS PAIN AND SLEEP REPORT
Slept from about 10pm last night, until 5:30am. Like the prior night, fell asleep on the couch about 10pm and then moved to bed about midnight. The pain in my back this morning was less than the prior night (Friday morning). Also, it may have moved a little bit from my low mid back, to my low back. That is where I have felt pain more commonly over the past several years. Pain was a 1.5 on a 10 scale.




Also, yesterday around noon that I was feeling almost pain free overall. Flexibility was good, and I commented to my wife that I was cautiously optimistic I was seeing some results from my diet. Also, I swam 18 laps this morning, and felt less pain than my prior swimming session.

I continue to believe I need to be cautious in my observations. Having a chronic and progressive condition makes one want to find some control over their pain and their future. I am anxious to find control through diet, but the changes are not definitive enough yet for me to say with certainty the diet is working. Further, this is only day 6, and peoples experiences on this forum suggest it can take anywhere from a few days to several months to see results.

10/17/2014 FOOD JOURNAL
Breakfast
- Left over chicken
- Walnuts
Snacks throughout the day
- Pumpkin Seeds
- Walnuts
- Pistachios
- Leftover Chicken
- Medjool dates
- Trader Joe’s Coconut Chips. This was a major food discovery as I was really craving something besides my nuts and seeds for a snack. And they passed the iodine test.



Dinner
- Salad with Buffalo steak strips, sautéed Shitake mushrooms, and Trader Joes Tuscan Italian salad dressing
- Swiss chard with yellow raisins
- Fruit bowl with kiwi, blueberries, and green grapes
- Date roll covered in coconut sprinkles




10/18/2018 EXERCISE JOURNAL
As I mentioned above, 18 laps in the pool this morning. Less pain and more “loose” than my swim two days prior. Pain is about a 1 on a 10 scale.

NOTE
I feel a little self-conscious journaling my very moderate pain on this forum. I am aware there are many people on this site with much greater pain and immobility than I have. I don’t mean for my reflections to belittle their experience. My goal is to catalog my experience as I seek some control over my situation, gain the feedback of those who know more about this than I, and create a journal that I can reflect back on if my situation progresses over time.

Couple o' comments.

First thing, as others indicate, everyone is different, so take my comments with a grain of salt.

Over time, I've gotten super sensitive to starches, so even small amounts can trigger mild symptoms.

Avocado - I used to have a problem with it, but now I can eat it with zero problems. In the beginning, I stayed away from a lot of fringe foods and as I became asymptomatic, I periodically experimented to expand what I could eat.

Salad Dressing - Personally, I would stay away from any bottled dressing. If you're sensitive to starches, it's the seasonings, flavorings, preservatives in stuff that may prevent you from being completely asymptomatic. For me, my salad dressing is a simple olive oil and maybe a little salt.

Red Meat - Red meat does not trigger spondylitis symptoms in me, but it does impact my bowel movements. For that reason I avoid all red meat except for lamb. For a while, I was only indulging in red meat once a week, but now I'm up to twice a week, and it's only lamb that I'll eat because it doesn't seem to increase the time between bowel movements.

Apples - These could be a little dodgy.

Pickles - The cores of cucumbers have a little starch in them. So when I eat homemade pickles, I actually cut the cores of them out. It's a pain, but not as painful as spondylitis induced inflammation.

Yogurt - As you indicated, in the short term, you may want to lose the dairy.

Mangoes / Peaches / Pineapples - Some people feel that stone fruits are off-limits if you are true to the NSD. Mangoes and pineapples may be safer if they are ripe and harvested when they are ripe.

Blueberries / Grapes - I have had zero issues with blueberries and grapes. Even though I rarely eat them, when they are in season, I sometimes indulge and don't have any problems.

Pumpkin seeds - Does this pass the iodine test? My gut (figuratively) says forgo, but I haven't had any experience with it.

Carrots - In general, root vegetables are no-nos. The only exceptions I've found are garlic and ginger. But carrots, beets, etc., are off limits to me.

Celery - Safe. I rarely eat it any more, but early on, I ate a lot and never had a problem with it.

Eggs - They are a huge staple for me. Not sure if you're willing to add them but if you're looking for something, that may be something for you.

Finding the diet that you best respond to takes time. It took me about 6+ months to narrow down on a set of foods that I was comfortable eating. Over the course of the next 5 years, I continued to refine and tried adding some fringe foods back into my diet - some with success, others with pain. It's great that you're keeping a food diary that was instrumental to me.

I've found that once I switched over to a ketogenic diet, I started feeling A LOT better. If you're looking for calories, don't skimp on (healthy) fats.

Seems like you're off to a good start. Slow and steady wins the race. For me, even the smallest amount of starch endangers my asymptomatic bliss, so I have to very vigilant. Keep being persistent and share your experiences with the community. Going from 1 or 2 on the pain scale to 0 took a lot of work in finding out the hidden starches I was consuming.

Good luck!

Thank you FormerFoodie for your comments.

Yes, I am willing to add eggs in my diet, and in fact I did so yesterday.

Until this diet, I have eaten very little red meat - once every two or three months maybe. My GI tracts response has been unpredictable when I eat it, so I am going to begin to transition away from it and over to eggs.

Also, I am wanting to add yogurt and kefir back as soon as possible. I like it in my shakes with fresh blueberries, and it is great for my GI tract. I hear your caution on dairy, but is it true that some people have less trouble with these types of dairy?

I was also surprised that the pumpkin seeds were not starchy, but I have iodine tested them several times now. I thought they would be a good source of fiber(?) and a good addition to my diet. I am getting the 16oz clear bag from Trader Joe's simply titled "Raw PUMPKIN SEEDS". If anyone reading this wants to test them and see if they work for their diet, I would welcome the feedback.

THIS MORNINGS SLEEP AND PAIN REPORT
Went to bed just before midnight last night, and slept until about 8:30am (wow!). Upon waking, pain was under a 1, and it could be better described as stiffness than pain. And to be clear, the stiffness was similar to most mornings - it was mild. Areas affected were the same as the graphic in my previous post.

I still cannot definitively say the diet is working, but I am certainly not having increased pain, and I am finding times when the pain seems to be less. Before I went to bed last night I was surprised at how far I could arch my back in the yoga pose which I think it called "the cobra pose" (there is a yoga term for it which I forget right now) without feeling pain.

10/18/2014 FOOD JOURNAL
I added eggs today. I had two fried eggs (in olive oil), and the Swiss chard leftovers. Date and coconut snacks, and other leftovers from my prior days food list. For dinner I had what was in essence a salad nicois, with lettuce, tuna, hard boiled eggs, olives. I skipped the green beans which were sauteed in oil and garlic, but am wishing I had them. They looked tasty, and I am really wanting to up my vegetable intake of all types. I did not keep my journal as closely yesterday during the day to list my food ingredients here, but I was very good about sticking to my diet and avoiding starch.

EXERCISE
I may or may not swim today, but at the least I will take a long walk.