Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; ate a lot of starch, no reaction

I've seen several posts where people go on NSD and have significant relief. Then, they stop for a few days, eat a lot of starch, and remark that "nothing happened" (ie. the starch didn't hurt them).

I've experienced that this week. The last few weeks I've been flaring off-and-on despite trying to stay as strict as possible on NSD. I'd kick myself for accidentally consuming something that turned out to be starchy, like the seeds of a cucumber, an unripened pear, some shellfish, etc. Then finally during business travel, I was stuck at a hotel with few food options. I said "to heck with it" and ate spaghetti, pizza, sandwiches, low-fat ice cream with starchy filler, etc. For 3 days I ate nothing but wheat and dairy and strangely - no AS pain.

I understand that this isn't an open invitation to start consuming starches en masse. I'm back home and back to a clean diet. But I'm wondering how this can be possible? ie. how does the leaky gut theory explain that sometimes large quantities of starch can go through your gut and you "get lucky" and it doesn't trigger a reaction?

Didier

Hi, Didier:

The problem with starches is their effects will sneak up on us when we least need or want them. A few dishes now and again will not make any difference, but it is a statistical thing and sowing dragon's teeth can eventually result in a flare.

After many years--for six years not a slice of pizza nor any French fry passed my lips--and proving over and over again the connection between starch and symptoms, my AS seems to be leaving me alone totally. But it is after many cycles of antibiotics, also but none regularly for several years now.

SED rates of 1 and 2 up to 9 but not the 42+ I was before NSD, so I can eat starches with impunity (and I do not 'need' the empty calories), but I know full well that eventually I will come down with a flare and last flares involved iritis, so I try not to over-do my starch intake and consider it experimentation now. When I had dinner with Professor Ebringer, I told him I had become the 'other' twin--from AS twin studies; still susceptible but no longer triggering symptoms.

The advantage I have by now is that, once that inevitable flare comes on, I know exactly what to do about it. But like I said, I want to stay well out of iritis-risk, so I am still moderate, and wishing that Ebringers IgA-Kp testing were available so I could have an early warning.

I don't know how to characterize our risk--the Gambler's fallacy, or just simple statistics of any other reliability--certainly we are taking chances.

As a child, I never experienced AS symptoms (and the molecular mimicry proposal explains why), and so what factors combine to manifest our 'delayed-onset heritable disease?' But since it is so delayed, sometimes "re-manifestation" of symptoms can likewise be delayed.

Please let us know how You do, long-term and always hope for Your HEALTH,
John

I didn't develop mine till 20 or so.

Hello Didier,

We are all each individual cases... personally if I ate what you ate I would be in a full flare.

It is hard to follow everyone that posts here so I cannot say I am familiar with your personal story. Are you on medications at the moment? You also stated you have had issues finding relief in this post with No Starch... maybe you are not one that responds to diet.

How long have you had AS? When where you diagnosed?

Best,

Tim

Didier,

I think the consensus here is to respect your food. Some do it by experience / feeling (what flares you up, what gives you energy, etc.), others research; most do a combination of both. However you come to your food intake conclusion, recognize the foods that exist in nature and avoid those that do not.

Tim,

Thanks for your kind words. I'm 33 and have had AS for 5 years and UC that has been in remission for a long time:

Year 1 - SIJ pain, hard to walk on occasion, no meds
Year 2 - started Celebrex. almost no pain. half-dose every few months
Year 3 - stiffness off-and-on in my low back, SIJ pain flares, iritis flare
Year 4 - shifting stiffness throughout my back, Celebrex every other day
Year 5 - rib and sternum pain, x-ray shows fissures in my SIJs, another iritis flare, Celebrex every other day

In year 4 I had a 3 month remission when I cut out wheat, dairy, eggs, nightshades, citrus, beef and pork. That was my first exposure to diet but I found it impractical and the pain started returning. So I stopped.

I first discovered NSD on this site in June this year. After "doing it wrong" for several weeks - I kept realizing there was starch in a food I thought was safe - I finally had a solid month of mostly clean diet and during that period I had no pain or inflammation. I was really impressed!

But, side-effect, the NSD I was eating had so many vegetables and fruits that seemed to aggravate my stomach. I was very bloated (lost 10 pounds but went from pants size 32 to 35) and it re-activated my UC, I had bloody stools daily. As a test, I switched back to a western diet and within 2 days the bloody stools stopped and bloating improved significantly.

The last 4 months I have been trying to figure out alternate NSD regimes that would be gentler on my UC. I tried incorporating some sweet potato, some diary, some rice, different types of fruits and vegetables that were not on the FODMAPs list, etc. but unfortunately none of these seemed to help my AS.

Oddly, this last week I was traveling, not many food options, I was sick, and out of sheer frustration I just started eating sandwiches, pasta, pizza, etc. daily. And that week I had no pain or inflammation. We went to a children's party and I ate 3 hot dogs, with bun, plus cookies, etc. - no pain, even several days later. So I certainly am curious what to do next.

I really thought that going on a 7-day bender eating every starch in sight would have produced some kind of pain or inflammation. Hence my curiosity why this would happen, if it is common, etc. ?

I've had a pretty bad cold for the last 7 days too. So it's possible it's "diverted" my immune system for 7 days and as I get better the AS pain will return. A guess, really.

I've read a lot of people who say "the diet didn't work for them" and it strikes me they weren't trying very hard, or testing with iodine, or they were cheating like the "saturday night popcorn" example I've seen John refer to. So I am still optimistic, perhaps I've still been making mistakes unknowingly while on NSD, maybe the last 7 days of hot dogs and so forth was just a fluke, perhaps there is a version of NSD that will work for me if I keep trying.

Hello Didier,

Sounds as if you already had some starch in your diet prior to the business trip if you were eating "sweet potato, some diary, some rice".

If that is the case your body may not be able to tell difference due to the starch on the business trip.

If I would eat sweet potato or rice daily or every 2-3 days, I would not notice any improvement on the diet long term (especially early on in the diet).

But if you are able to eat this on occasion and still do OK, your GI may be in pretty good shape.

What type of veggie/fruits were you eating that you got bloated?

Best to you,

Tim

Tim, thanks for the extra "food for thought", so to speak.

When I say some "sweet potato, dairy, rice" I mean I had experimented over the last few months. One week I tried eating half a sweet potato every day. One week just tried no-starch vanilla ice cream for dessert every day (per Carol Sinclair). One week I had no starch except a few tablespoons of rice each day (inspired by Brian Z's story).

Anyway I keep a food diary and in the last 10 days prior to my business trip there was little starch involved, but pain and stiffness almost daily. So I find it hard to fathom that the week I jumped to spaghetti, bread, pizza, McDonalds soft-serve ice cream (starchy no doubt), I had no pain or stiffness to speak of.

In terms of fruits and vegetables that were bloating, I haven't figured out which. When you read the list of fruits and vegetables that can aggravate UC and be bloating, it's basically all of them. Or it could be nuts, for all I know. Even in the last few days my bloating has resumed as I went back to NSD. I've been eating romaine lettuce, celery, pineapple, blueberries and pears, and lots of almonds. Still no pain, but certainly bloating. I suspect to really figure out which foods are the culprits, I'd have to do a full-on SCD diet and add individual foods one by one, but I don't feel like I could reasonably fit this into my life right now.

Andrea had a great suggestion about food combining to avoid bloating, which I've been trying, with little success, but I'm trying to give it more time to see if it will help.

Any other thoughts or suggestions, I would appreciate very much.

Didier

Hello Didier,

Thanks for the clarifications, your case is a perplexing one for sure.

I guess these are my initial thoughts.. not saying anyone of them is correct, just thinking out loud>
- Your intestinal tract may be in better shape if you could eat that large amount of starch and not flare (but does not explain why you have not seen more results prior on diet).
- Maybe you do not respond to the diet. I know several posters over the years that have been very diligent with the diet and never responded. We are all very different... we may all have AS, but there many be several variations based on genetics or other criteria... this is just me thinking trying to understand why there is not one cure for AS (medication wise or diet wise).
- Maybe it will still take time... maybe has to do with your bacterial balance yet and still needs some improvement

I rarely have bloating with NSD... I also gave up all sodas and I notice they cause me to become bloated now. I would guess fruits (with sugar) and/or cruciferous veggies (broccoli, kale, cabbage) could be an issue. Again... I have to think it is something bacterial.

Have you ever had a colonic performed or are they available where you are at? At about the one year mark of being on the diet, I had series of them performed and it really straightened out some of the issues I was still having. I stay up on probiotics now to help ensure my bacterial balance stays pretty good.

Best to you on finding answers.

Tim

Hello Didier,

I think it's possible your immune system has been diverted by your cold. I started taking curcumin & fish oil supplements at the week-end and on Tuesday i woke up with the lowest levels of inflammation i've had in years, a 1 or maybe even a 0 out of 10, felt absolutely great all day, thought "what those supplements work like a charm". However i was full of a cold at the same time too and now my cold is better but my back is hurting again. So maybe it was the cold calming down the AS pain ??