Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Help me sort this out?

ok, so several of you will remember possibly, but a quick recap. i started the NSD 5 weeks ago now after a bad flare with my knees. since being on the diet i had another really bad flare and a milder one started this week. i panicked and called the doc for another round of prednisone (my third one, my husband says they're going to cut me off, lol.) but i have company coming later this week, a big track meet to attend and my son's high school graduation and reception to put on and another son's 8th grade graduation. i have to be able to walk this week! also when my knees flare it makes me so tired its hard to find the energy to do life.

so looking at my food journal, if i were to think it had something to do with that, i took metamucil three nights in a row, the orange flavor with sucrose. (i didn't realize what sucrose was and checked Carol Sinclairs book.) my knees progressively got worse those three days to the point i couldn't do my exercises and my husband informed me that lump on the back of my knee is a baker's cyst! ugh!

could it have been the sugar in the metamucil? or do you think its just another mystery flare? i am on the verge of trying antibiotic therapy if i can figure out what kind of antibiotics and what kind of probiotics to take.

everything i eat tests negative for starch. i don't use any dairy. i do eat a few strawberries about everyday and have enjoyed a little bit of melon a few times... ocassional dried fruit. i sometimes use maple syrup or honey in small amounts and love watered down grape juice with my breakfast. i've never noticed pain after these things like a flare with my knees. do you think i should give up fruit? or do you think maybe i just havent been on the diet long enough to see the full benefits.

i guess another question is this: i know there are people who can't eat fruit or can't eat avocados or cauliflower. can a food test negative for starch and still be a problem? can i trust that if it tests negative then it should be ok. or is the test whether or not you feel pain 5 to 6 hours later or the next day.

thanks for your patience while i'm trying to figure all this out!

~shelli

Sucrose is just the chemical name for what we would call normal sugar.. the same type that you put in your tea and coffee etc. Klebsiella will feed on sugar if it can get to it, but sucrose (like other types of sugar) is very soluble in water so it has very little chance of making it to the large intestines as it will be absorbed before it gets there.

I don't think sugar would be a problem unless you eat a lot of it?

The diet is not an exact science unfortunately.

I know many people say that this makes them flare or that makes them flare... I think most of it is probably imagined. AS is such a variable disease, with good and bad periods and flares which come and go with no real observable pattern. I think it is pretty easy to blame something you recently ate for a flare up which probably would have happened anyway.

Hopefully others who have had more experience can shed more light on it for you.

i think that is true to an extent, but wish so much it were more in my power to be able to prevent a flare.

dont know if this will help but...
i cant have sugar. fruit is ok tho.
honey i cant do and maple syrup blows my knees up quick and big time!
yes some things that test ok can be a prob due to other aspects i.e asparagus. has inulin that some cant handle.
i also have trouble with artificial sweeteners and food dyes.

i would say stop the metamucil? sounds like the culprit. if u eat other things with sugar and dont have a prob then maybe amount of sugar matters OR other things in the product.

@shellim.

you shoudl keep a food journal.
some foods "legal" on NSD can trigger flares on some people.

also, you might wanna know that NSD effects are measured in months&years. So be patient. Do not dispair Sun will shine on your alley too.

Hi, Shelli:

CONGRATULATIONS! for sticking with the diet, and I am sorry You have had this setback--oh, there will be those darned setbacks!!



Well yes--caramel is a good example.

I was in a similar state as You are now, right before my niece's wedding quite a distance away and anticipated some physical exertion, even a day hike involved.

Swollen knee, iritis, terrible hip bursitis, etc.

ALL I did for myself I should not describe in polite company, but it involved the colon irrigations, especially some retention with a solution of sulfasalazine.

But also and perhaps more important was a quick fast of three days then two of apples, followed by very careful diet--clear consommes and tofu; that kind of thing; there is a condition called "septic hip" or "megacolon" that could have caused my knee edema. And I even wonder about Clostridium overgrowth and the fact I had been taking antibiotics.

Got over the episode within the requisite 10 days or so, and managed to hike nearly 4 very rough miles with only minor repercussions due to knee and no complaining from previously locked-up left hip.

Just experiment and keep to an aseptic, laxative, and low-roughage diet for now.

HEALTH,
John

Hi, Philsta:

Even many years before I found out about LSD/NSD, I could trigger a flare with nearly 100% certainty by eating fried foods. First sign was a terrible flare within hours after eating fried rice, but later I could eat French fries, papadum, onion rings, etc and I would nearly always flare. Finally told about the starch connection and it was the lightbulb overhead flashed bright.

Sugar--Ok, for most people with only AS it should not be a problem, but many of us have AS as the result of an insidious fungal growth--candidiasis. And this fungus feasts upon sugar and has been observed to produce fruiting stage (hyphae, which penetrate the epithelium and cause/contribute to LGS), so the connection is not usually as immediate as the starch S>R (Stimulus leads to Response).

HEALTH,
John

Seems unlikely. Most people are OK with sugar on the NSD whether it's fruit sugar or refined white sugar. Some have a problem with it but it's not typical for everyone. If you're looking for more fibre to get things going try baking with coconut flour as it has even more fibre than wheat bran and is starch free.



No I wouldn't give up fruit yet. I think 5 weeks is definately not enough time on the diet to expect no more flares. Took 9 months for my hubby to be able to give up NSAIDS and he would still have occasional flares after that (usually caused by accidental starch by that stage). If you are not seeing noticeable improvements in your symptoms (notice I said improvements not completely pain free) by 3 months then I would consider reducing sugar. Typical pattern is gradual improvement over a period of months with the odd set back here and there.




Here in NZ cooked cauliflower is usually starchy so Jon avoids it. Occassionally I can find one that isn't starchy but they are few and far between. I read somewhere something about the longer they are kept in the ground the starchier they get but I don't know if thats true. When Jon eats the ones that test positive for starch he flares, when he eats the ones that don't test positive he's fine. So in our house we trust the iodine test over what anybody else reckons that they can eat.

Good Luck

It may not be the sucrose, but the psyllium itself. I took plain psyllium fiber pills a couple days trying to add a "safe" source of fiber to my very limited diet, and although my digestion felt better my inflammation went UP -- started to get eye inflammation as if I'd eaten something really bad (like when I splurged on potatoes at Christmas a couple years ago). Ditched the pills and took some Aleve, so it didn't progress to full-blown iritis, but I have learned my lesson to stay away from that stuff. After that I found that flaxseed is tolerable for me, and that's a good source of fiber. Your mileage may vary -- others have mentioned flaxseed upsetting their digestion.

great....! i just ordered psyllium and flaxseed, haha... now i won't know which one to try!