Tagged: Interstitial cystitis
- ftderParticipantNovember 11, 2014 at 5:35 amPost count: 210
Pam, also very wonderfull that you have made such progress. When you first started the FTD did you keep out ALL carbs? Or did you include some?JaemeParticipantNovember 11, 2014 at 3:01 pmPost count: 348
Bearsmom – yes, I can have a glass of wine or a bottle of hard cider, etc. now without problems. I only ever had one glass at a time, once in a while with a dinner before,, so this is back to normal for me.
Please eat the Jasmine rice – I goofed and cut out almost all carbs when I started the diet including the rice (was only at 10-20 carbs total a day). I went into ketosis (body switched to burning fats) and I lost a lot of weight until I figured that out. Since Jasmine rice is negative FP points, it should not make it into the intestines or cause any symptoms. Sticky rice does have some FP points, so I would stick to Jasmine.
Pam, I totally agree with you. It was all of the traditional doctors telling me to go on the no/low acid diets (like Dropping Acid) and acid blocking medicines that led me to research on my own and find Norm’s website & book (my symptoms increased x10 on those traditional plans). Once I tried FTD and improved so much, I had follow-up appointments with those traditional doctors and they all looked at me like I was crazy and dismissed the approach as quackery. Needless to say, I have switched doctors and found ones that are open to the FTD and food-based approach instead of pushing meds. A big help was finding a Nutritionist (not dietician) who was an RN and now a MS in Nutrition whose ideas are complimentary to Norm’s.ftderParticipantNovember 11, 2014 at 3:08 pmPost count: 210
Jaeme, GOOD for you for switching doctors. A few out there are very open-minded, and a nutritionist was a smart choice too.
Jaeme, THANKS for the advice about Jasmine Rice. can I ask you about baby rice cereal made with white rice? Would that be ok? It has 36 grams of carbs per serving and zero fiber. I am not sure how much of this to eat, but I am guessing if I eat around 100 calories which is just over half a cup, that would be enough to keep me out of ketosis? I don’t want to feed my candida by getting my blood sugar up too high. Thanks for your thoughts!!PamParticipantNovember 11, 2014 at 3:16 pmPost count: 52
At first when I was diagnosed with IC I was on all kinds of drugs and strict to the IC diet. Then I started looking at the hormone connection as I was perimenopausal. Estrogen helped somewhat but not all the way. But, what about other people with this IC disease. We have very young girls, even children with the problem and also men? Hormones do not explain the problem for them so there must be another factor. It wasn’t until I had to get a colonoscopy that I made the bowel/bladder connection and luckily I found SIBO connection.
When I first started addressing the diet for SIBO I went to a nutritionist to get help. From there they recommended the Paleo diet. I do eat meat, but not like that diet recommends and really did not like it at all. Also I took the following out of my diet: soy, peanuts, dairy, eggs, gluten, all grains, certain veggies and fruit…even this diet was difficult. I think I do have issues with soy as I went to have sushi the other nite and within one hour I felt sick, my husband and I ate exactly the same thing and he was fine.
I was also taking BPP which is a digestive supplement (Thorne Institute) and still use Peptogest – an enteric coated peppermint oil disgestive aid. Then came trying to build back my nutrients in general as I knew I also had malabsorption problems. This included a quality B vitamin supplement (B vitamins are a no, no for IC because they irritate the bladder) but I did not have a problem with them and they really make me feel better.
I also drink what I call my daily sludge: 1 scoop Vegasport (has all kinds of digestive enzymes and over 5400 mg of L-Glutamine (good for people that have gut issues). I also take Bone Up by Jarrow (multimineral supplement); Quercetin/Bromelain (aids in calming down irritants) and a multi vitamin. Put all of this into a blender, add a handful of berries and a packed handful of good lettuce or spinach and one cup of unsweetened almond milk. Blend this all up and drink throughout the day. Very helpful for the gut.
As far as drinking, there are some things you can drink but not overdo it. I concentrate on drinking one cup of very dry white wine with my dinner. The wine helps digest the food. I have not had any problem with this at all.
I turned to Norms diet because the Paleo, SCD and FODMAP diet were confusing and conflicting and Norm’s diet makes sense. Although I think I will still avoid the soy as I appear to have a problem with this and maybe even gluten.
I have IBS-C and it is a battle. Drink plenty of water and in some cases when it is bad I take rescue supplement…magnesium citrate. Also, you can still be classified as having constipation if you have bowels everyday. I make sure I have a bowel everyday as I don’t need a backup occurring from the large intestine!
PamftderParticipantNovember 11, 2014 at 3:38 pmPost count: 210
Pam, you are very kind to post in such detail. Thanks so much for that! I am so excited about the wine, but want to get my sibo under control first. Another area for you to look if you have continuing symptoms, is candida albicans overgrowth. The list of symptoms for candida overgrowth is VERY long and of course it overlaps with SIBO symptoms in some cases so it can be a bit confusing. But Dr. Brizman finds candida overgrowth in almost every case, and uses SF 722 from Thorne Research Labs in combinations with other things.
In her 20 years of treating IC, she has found SOY to be VERY BAD for IC. Also, because of our compromised gut health, ingesting raw fish can be really problematic. Even the best quality sushi harbors viruses and pathogens and I would steer clear.In Chinese Medicine, soy is cold and constricting. A little hard to understand for a westerner, but best to avoid it most of the time. If you want to eat sushi, AVOID the soy sauce, consider limiting the raw fish and opt for the veggie sushi, and consume the ginger always with the sushi, to aid digestion. Also, fungal foods, such as peaunut butter, mushrooms, and very aged cheese like blue cheese are not good for candida or IC! (almond butter and I LOVE Maisey Jane’s Organic Smooth-you can buy it on AMazon-so superior to many almond butters). Another note of caution for coconut. She has found this to be incredibly harsh for IC, especially if consumed regularly because of its antibacterial qualities. REmember even natural antibacterials kill bad AND good bacteria. Also popcorn and coconut and oats are only ok in moderation AFTER the gut is REALLY healed. They are like sandpaper otherwise.
I really recommend her dissertation. In particular, the middle section with case studies and SIBO discussion. It is CHinese Medicine but it is REALY fascinating.If you find you are not making the progress you are hoping for, do let me know as the ICAMA approach is a little different than what you are doing and could be very helpful.
So great to hear you can enjoy a glass of wine. I am so looking forward to this!!PamParticipantNovember 11, 2014 at 4:14 pmPost count: 52
Bearsmom and Jaeme – thanks so much for all the great advice it is so nice to be on the same track here. Also on the coconut. On the Paleo diet it is coconut this and that I was having so much coconut. Thru Norm’s stuff I read that coconut is a medium rating fermentation and so I switched to almonds and I think that will help.
Also just beginning to introduce a probiotic it seemed like when I tried it before it literally made me sick.
And, when I originally went on the low carb diet I did lose a lot of weight quickly but the bloating went away and now I am back to gaining back some of my weight.
Pam from Colorado!ftderParticipantNovember 11, 2014 at 5:12 pmPost count: 210
Pam I cant tell you how exciting it is to hear that your bloating resolved. This is by far my worst symptom. I really, really, really hate it and don’t fit my clothes!!!
Pam, when you started did you consume some carbs? And how many? I am trying a little white rice cereal (about 1/2 cup=100 calories) per day, at breakfast. Dr. Brizman says carbs at night are not as good with candida, as it just feeds the candida and the energy from the carbs are not utilized while sleeping.
Also, for fruit now I am doing only 1/3 cup of blueberries or raspberries. I do miss pear, since it is pear season. Do you find 1/3-1/2 a pear reasonable to stay in the low FP limits? Or did you leave most fruit out?
Pam, as for the probiotics, along with SIBO, those with IC usually have SEVERE leaky gut, so the probiotics (and yes especially home made fermented veggies) slip through the tight junction right into our lymphatic system and cause EXTREME inflammation and immune response. This is why Dr. Brizman starts with micro-doses on single strain probiotics, in particular Natren Megadophilus, Natren Bifido, and Natren Digesta-lac for some, and in that exact order. When using single strains it is easier to see how the probios are acting on symptoms. Mega had been good for me but now stops me up. Bifido is workign for me right now, (I am still on anti-fungals) and bifido improves paristalsis. Dr. Robillard mentions SBOs might be beneficial for SIBO and IBS, but my doctor does not use SBOs and she always uses the acid-forming probiotics in combinations with her herbs to balance out the doses. This is the way of Chinese Medicine!! Each probiotic has different properties so she is always carefully combining and balancing.ftderParticipantNovember 11, 2014 at 5:16 pmPost count: 210
Also, Jaeme and Pam
I wanted to ask what other carbs you are tollerating? Have you tried white spelt for baking? Sourdough as mentioned in the book? Tapioca or arrowroot for baking? I love to bake muffins and scones for my kids (low sugar/alternative sweeteners, of course, and I don’t sweeten mine).
Per the warnings about arsenic in rice (particularly brown rice) I do NOT think it a good idea to eat rice every day! Maybe only 3 times per week to stay at safe arsenic exposure levels for an adult. Thoughts?Norm RobillardKeymasterNovember 11, 2014 at 6:51 pmPost count: 438
Fascinating posts. This group is taking things to the next level. Keep it coming. You’ve got me taking notes.PamParticipantNovember 11, 2014 at 7:12 pmPost count: 52
Initially I did not have any carbs it was difficult. Literally just meats and more meats YUCK. For my other proteins I depended on the Vegasport. And as for pears, oddly, one of the fruits that they said is ok for IC, is SIBO bad so I stay away from pears and apples. The only fruits I eat are pineapple, berries and tangerines. Fairly limited but I also love lemons and have those daily.
Also for a sweet drink and not sure if okay with Robillard but I try Pellegrino mineral water it is carbonated, add a good squeeze of fresh lemon juice and then one packet organic stevia, viola a sweet drinK.
On the probiotics I am just now trying Natural Factors Acidophilus and Bifidus.
And, I think that not only in Robillards book but also in Pimentels book is this idea of the cleansing wave. So when you eat, eat well and then let your gut rest.
PamPamParticipantNovember 11, 2014 at 7:24 pmPost count: 52
On the arsenic in rice, it is recommended that you wash your rice until it runs clear. So I measure the dry rice and let it soak in the pan I am going to use for cooking the rice for about 5 minutes then rinse until the water is clear. Then let the rice dry in the strainer for a little bit so the rice isn’t too wet before cooking. I have totally nixed any other type of rice other than Jasmine as Robillard recommends, he also talks about sticky rice as ok.
Baking breads, cookies, etc…have fairly much nixed that too. Until you heal you really need to stay away from that stuff. Sorry separate meals for the kids, been there!
I am not sure about the other flours for baking like white rice flour I need to enter the values into Norm’s fermentation calculator.ftderParticipantNovember 11, 2014 at 7:26 pmPost count: 210
Thanks for following this Norm!!
IC is one of those incredibly complex chronic illnesses, effecting 4-8 million people in the US alone, mostly women (although maybe 12-20% men). It is so poorly understood by the western medical community and many of us suffering with it have turned to alternative or self-treatment, as I am sure you have gathered by now. It is surely the evil step child of SIB0/IBS. At a minimum IC has very uncomfortable symptomology. AT its worst, people are peeing 60 times per day, have severe pelvic pain, and are house bound and bed bound. Intimacy becomes not an option. It is no joke. If your diet could make an impact on this debilitating illnesss that is starting to affect younger and younger people, this in my opinion would be such a huge, huge thing. Perhaps a research study is in the cards. You would have NO trouble getting subjects. This is a desperate group.ftderParticipantNovember 11, 2014 at 7:32 pmPost count: 210
Pam, thanks for all your thoughts on gut resting and rice! Sorry for all the questions..
How long did you eat only meat and veggies?
Did you eat any cheese or nuts? I seem to tollerate them ok? But I have bloating all the time, but these foods do not bother my bladder? I also eat full fat greek yogurt for breakfast but keeping that to 1/2 cup//
Did you have constipation at first? How did you address this? You said you started having good BMs after 3 months. I drink water and eat lots of green veggies and cashews and take 800mg of zinc at night. But I often only have one BM which does not seem adequate!!
Hmmm Jaeme is recommending the jasmine rice, and you are saying you started without any. Jaeme was in ketosis. I am not sure how to proceed. I guess I will start with 1/2 cup jasmine rice at one meal and see if my bloating will come down. If it does not, I guess I will have to take it out for a while and keep protien at 20%.PamParticipantNovember 11, 2014 at 8:00 pmPost count: 52
No I did not eat any cheese at all, not sure if I really had to avoid but this is what my nutrionist told me probably because of the lactose. It was a very hard diet to follow. Also, keep in mind that it may take some time to have normal bowels.
Actually when I did have cheese for the first time in about 2 months it made me sick to my stomach. I eat cheese now but only a bite or two thats it!
Yes, nuts and seeds were okay for me and I would have these for breakfast.
I would see how this goes for you, give Robillard’s diet a chance if this does not work you may have to go to the total elimination diet. Norm talks about this in his book.
PamPamParticipantNovember 11, 2014 at 8:03 pmPost count: 52
For really good information about SIBO and IC see the Turnbull study go to this link
Use CTRL F and enter interstitial cystitis to wade thru all the other diseases associated with SIBO.
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