Tagged: Interstitial cystitis
- PamParticipantDecember 6, 2014 at 6:30 pmPost count: 52
My diet…well, there are just things that are forever off my list. After looking at the fodmap, scd, low oxalate, ic and low fermentation my diet is a mix of all of them. My constipation is still somewhat of a problem but my fault is that I do not drink enough water but I do everything else in moderation. I do find that if I do not drink my sludge that my bowels do not move as well so keep trying to go back onto that. Avoiding ketosis may mean that you need to add protein, I think it is at least 30 g per day. The recommendation I saw was that you need to treat your body like a body building does to avoid ketosis.
As far as SIBO symptoms…my gut is still FLAT! I am not getting the bloating although I do get gurgling every once and a while. Sometimes I take a digestive enzyme particularly for anything I know I will have a problem digesting like sugars. Yes I cheat sometimes, like if I am going to have a slice of that holiday pie I take a digestive enzyme.
Still avoid lactose and for the gluten I just had a blood biomarker test on that and my odds of celiac are not different than the general population but that does not mean I may not have gluten sensitivity. I may eat a slice of white bread, only consume jasmine rice. I basically try to remain on low fermentation. In general I feel good, especially when I take my vitamin B supplements.
I think my sludge with the L-glutamine is still really important for my healing.I did add NAG too. In general I am still doing way better than ever. Also, have difficulty with raw lettuce, spinach so that goes in the sludge.
Initially when I started the whole SIBO diet thing I was very restrictive like you and I have read it can take up to one year for healing. This was one reason I did the antibiotic I could no longer endure the horrid pain I was in and so I believe it helped me get a hold on this little monster.ftderParticipantDecember 6, 2014 at 11:15 pmPost count: 210
Pam, it is really wonderfull you have found some good relief after all the hard work and pain you have endured!
Couple more quick questions/thoughts:
You said you take an enzyme if you are going to occasionally have a dessert? Does this mean you take an amylase enzyme to help you digest the starch in the dessert? Is there some specific enzyme you take that you can recommend? I would not want to take that daily, but occasionally it would be good to know about!
You said raw greens are still hard for you (Thanks for the recommendation to make a smoothie, it has been really helpful for me I think). Do the raw greens bother your bladder? Or your gut (bloating, heartburn, gas)? Hardly any foods bother my bladder, but obviously many are bothering my gut until I can reduce this overgrowth!
I know I have mentioned Natren Probiotics to you before. I hope you have a closer look at them, including the Digesta-lac (a strain that produces lactase to help you digest dairy). You can call the company and ask them what they recommend. You can start VERY small with the probiotics. My doc uses usally small amounts of mega, then bifido, then sometimes degesta-lac. I believe hey all help digest dairy-especially the digesta-lac. I would be nice if you could eat a little. Also, have you experimented with raw dairy cheeses and raw butter?? My doctor swears that these are so much easier to digest when one’s gut is more healed. You might have a look at those–raw cheese is not hard to find at all! The natural enzymes and organisms in the raw dairy enhance digestability. Worth a shot!
Also, you said you can still have a glass of wine? (My doc says if I drink anything it should be Vodka, I guess because it does not tend to feed candida like beers and wine might?). Norm says wine shoule be ok. I have not had a drink in over two years. I am a mom of two school aged girls. LOL. I would LOVE to have the occasional glass of wine or sugar-free cocktail when I go out with my husband. How do you tolerate this? Do you have a glass weekly? Or every other night? Or less often? I will surely wait till my gut is more healed before I try but would love to know. Thanks for your thoughts!!PamParticipantDecember 7, 2014 at 12:17 amPost count: 52
The digestive supplement I take is called B.P.P. by Thorne Research. They have good information about it on their website. I take it when I think I might eat something that would HIGHLY bother me : ) Initially during my early treatment I took 1 capsule per day.
Raw veggies are definitely a gut trigger for me, I just feel ill after eating alot of them. One leaf is okay but not enough for my veggie requirements so I grind them up. Does not seem to directly bother my bladder.
Usually if I am going to consume a dairy product I just take a lactaid enzyme but I rarely consume dairy products.
Drinking..I have read that vodka and gin may be okay. Tried the gin it made me want to pee. I drink only very dry white wine and then it is one glass with dinner, its supposed to help digest your meal. I have definitely overdone (or 2 or 3 more cups) it before and it does bother my bladder but one glass is ok.
Yes, I checked out the Natren that looks like a good probiotic. I am going to finish mine first it is also simple strain.JaemeParticipantDecember 7, 2014 at 3:57 amPost count: 348
Bearsmom- for chocolate, I started with the milk chocolate listed in the FTD two week plan, then after adding back in lactose & fructose foods with no problems, I tried dark chocolate (same small amount as listed for milk chocolate in the two week plan). No problems, so next time two squares, etc. I am lucky, as I can now drink a cup of cocoa, have a small handful of dark chocolate M&Ms, several squares of dark chocolate, etc.
I started alcohol with a small glass of dry red wine (okay), then tried a bottle of dry hard cider (okay), etc. Prior to my LPR, I only drank one drink occasionally at a dinner out, so I am happy to be back to normal there too.
I still take enzymes when I need them, a probiotic every day, and a few supplements like Vitamin D based on bloodwork. Based in growing research about the effects of grains & sugar causing inflammation, I am fine with keeping them to a minimum.
I regularly use tumeric powder, ginger powder, & other anti-inflammatory spices in my smoothies & other meals. I think these help a lot. In the beginning I took DGL (deglycerhized licorice) chewables, marshmallow root & a product called Gastrazyme to heal my throat, esophagus & stomach. Was able to quit those after a few months.ftderParticipantDecember 9, 2014 at 8:30 pmPost count: 210
Jaeme THANKS so much!
Jaeme and Pam,
Things are going generally pretty well, although since cutting rice, fruit, nuts (ugh) I have had some bladder pain. My holistic doctor thinks that the bacteria are dying, or whatever bacterial “shift” is going on is having to detox through my sensitive bladder. She is giving me some herbs that are helping.
Pam, did have any increased bladder symptoms at the beginning of the diet?
Also, Pam or Jaeme, I still have a little dairy (cream in my coffee, a small serving of yogurt and a slice of cheese-I really dont want to give up but will if I have to). I have almost zero gas, but occasionally have a tiny bit of gas. Does this mean I should take out all dairy, just have LESS dairy, or is it possible, per Dr. Robillard’s trouble-shooting section, that I am eating too much protien?
When you started seeing results did you occasionally have a little gas or did it stop completely? My diet already feeling very restricted and I am stubbornly not wanting to cut anything else out!!
THANKS!!PamParticipantDecember 9, 2014 at 10:13 pmPost count: 52
So proud of you for doing this on the diet alone. Just wanted to mention that cashews rate as an illegal food on the FODMAP so thought I would pass that on.
Initially during sibo treatment I was very sick, nausea just icky. I took ginger supplements to help with that. Seems I felt sick for about one and 1/2 months, I think it was die off. But I was completely out of pain.
Still having to pee too much but I think it is the coffee. Also having some problems with the bowels again so drank a sludge.ftderParticipantDecember 9, 2014 at 10:53 pmPost count: 210
Haha on the sludge! Good! When you are ready to try, the Natren line has bifido which may help with paristalsis/BMs but start very micro dose on it such as 1/4 cap or less. Usually my doc uses megadophilus from Natren first in micro doses and then bifido. The last time I tried mega it really slowed down my BMs. (this was after months of candida cleanse) Not sure why but megadophilus is supposed to be good for IC, at least some of the time. I think it improves the PH of the small intestine and may help crowd out the baddies. Yes, I do pee a lot in the morning from coffee but usually the rest of the day is manageable and I sleep through the night. Except since drastically altering my diet I have generally felt very poorly in my bladder. My doc actually gave me oil of oregano (which is interesting as it is used as an herbal for SIBO) but she uses it to calm the pain so maybe it is killing some of the bacteria that are trying to hang on. Not sure? If it does not help with the bladder pain she will take me off of it. She corresponds by email DAILY so it really, really helps.
Hmmm as for the cashews, all nuts are out for me right now, BUT, I thought one of the key things about Norm’s diet is that we could have a few FODMAPS if we stay under 40 FP for the day??? I really don’t want to have a super restricted diet. I mean, for 6 months or a year maybe? But a lifetime without nuts and dairy would really suck.ftderParticipantDecember 9, 2014 at 10:55 pmPost count: 210
Also, Pam when adjusting to the diet did you have a tiny amount of gas from time to time? I am not sure if I have to further lower my FP, it is pretty darn low already. Thanks!PamParticipantDecember 9, 2014 at 11:22 pmPost count: 52
Yes I had gas and still do have some gas. Actually I was very gassy and loud but not stinky thanks for that.
On the oregano thats interesting. What are you taking and how much. Oregano is used as an herbal antibiotic for treating SIBO for those with runny problems from the disease where berberine and allicin is used for the constipation people…thats me!
I think after your gut heals that you will be able to eat all kinds of things but for now just watch out for the trigger foods. Actually walnuts and almonds are ok just cashews high FODMAP thats all. I do notice when I have nuts though that my stools are a little different, harder to pass…fairly certain it the nuts.
Please let me know about the oregano I am interested in that.
PamftderParticipantDecember 9, 2014 at 11:43 pmPost count: 210
Pam, pardon my dumb-ness on this, but I thought we were supposed to strive for no-gas, and if we still have gas, then the SIBO persists? Am I missing something here?Can we still heal our guts if we are harboring the gas-making bacteria?
Goldenseal and I don’t get along at all. IT just burns. Oil of oregano has lots of different properties. My doc does not go exclusively by the western purpose for the substance, but also by its energetic qualities from a Classical Chinese Medicine perspective AND she always pairs things. IC is a mix of deficiency AND excess which is why most TCM doctors dont know how to treat it. They treat the way TCM has always treated bladder conditions. But by the time IC is present, as you know there are LAYERS of issues that need to be untangled. My doc is an untangler. So she goes by a lot of different things. If she was putting you on goldenseal, it would always be in combinations with other things. I am only taking 5 drops per dose, and taking with with other things and being monitored. That is the way she works…
My doc does not allow walnuts till the end of treatment because of their HIGH vitamin/anti-oxidant content which ICers over-react to, LOL, so add that to the list of foods to watch!ftderParticipantDecember 9, 2014 at 11:44 pmPost count: 210
My doc also uses EAR Formula and Gan Mao Ling for IC patients, although she has not used them for meftderParticipantDecember 10, 2014 at 12:58 amPost count: 210
Pam, also when I lower my magnesium I seem to have less gas? Cerntainly less gurgling. So I am wondering if magnesium is contributing to the gas?PamParticipantDecember 10, 2014 at 1:58 amPost count: 52
Well I hope the SIBO is not coming back I was never retested to find out if it was completely resolved. I would think a little gas would be ok, perhaps this is a Norm question. Gads, I cannot imagine not having little gas, everyone passes a little gas right?
Also, you mentioned goldenseal and this is a herb I have completely steered away from because it can be dangerous if taken even for longer than one week; or so that I have read.
I still fairly much follow the diet but not as drastic as initially where I basically was starving myself. I mean no fermination anything…this means any meats I bought had to be holistic and cut by the butcher and consumed immediately. Could not have any leftovers because of fermination there too. Gads, I would hate to have to revisit that again it was really, really hard.
PamftderParticipantDecember 10, 2014 at 2:46 amPost count: 210
Yes Pam, LOL I hear you. I think your immune system is stronger now. I wonder a bit about holistic doctors that say only perfectly fresh food, etc…I mean this is not a hard science and our bodies should be able to handle a little mold or this or that as the immune system gets stronger. As long as you are feeling better and better and tolerating foods and vitamins and all that is a very good sign you are healing!!
Interesting about the gas, as Norm did say that some gas is produced in the large intestine. But I thought that gas producing bacteria was not good? Also I have a little bit of burping left. I hope that goes. It is not bad tho.I will ask Norm about this.
Berberine is the active ingredient in Goldenseal. There are a lot of Goldenseal myths on the internet. My doctor has used it safely in the right context for 18 years very effectively to treat some cases of IC.Norm RobillardKeymasterDecember 10, 2014 at 2:54 amPost count: 438
“When I lower my magnesium I seem to have less gas? Cerntainly less gurgling.”
Bloating, flatulence and cramping have been reported as side effects of mag citrate. Not sure what the mechanism is. Also, staying hydrated is important.
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