Tagged: Interstitial cystitis
- PamParticipantNovember 11, 2014 at 8:06 pmPost count: 52
Have you ever heard about the low oxalate diet? I am wondering if oxalates and fermentation are kind of the same beast?
PamftderParticipantNovember 11, 2014 at 8:58 pmPost count: 210
Sorry to butt in, in front of Norm, but I will provide you with a quote from a naturopath regarding the oxilate issue, which is the one I have read that makes the MOST SENSE thus far. Also, my doctor does not have people avoid oxilates because she thinks this all changes over time. Same with food sensitivities. Of course if something obviously bothers you , one would want to leave it out. But I a very wary of the low oxilate camp that blames IC on oxilates!
Dr. Chris Decker
OXALOBACTER FORMIGINES IS ONE OF THE FIRST BACTERIA TO BE KILLED OFF BY ANTIBIOTICS. IT IS VERY VULNERABLE. ONCE THE GUT MICROBIOME HAS BEEN RESTORED TO NORMAL FUNCTION, OXALATES ARE NO LONGER A PROBLEM. UNTIL THEN, IF OXALATES CAUSE SYMPTOMS, THEY SHOULD ABSOLUTELY BE AVOIDED–JUST LIKE ANYTHING ELSE THAT MAKES ONE FEEL WORSE, NO MATTER HOW HEALTHY IT’S SUPPOSED TO BE.ftderParticipantNovember 11, 2014 at 9:15 pmPost count: 210
Thanks for the link Pam. Yes I did look at this paper a while back. The problem is, so many of us have severe dysbiosis, candida, sibo, leaky gut, and the antibiotic approach is not enough, and does not address the underlying issues: Low motility, dried out mucosal tissues (this is addressed via chinese herbs), candida overgrowth, nutritional imbalances, blood sugar imbalances, etc….) so the conditions that allowed for the sibo overgrowth to begin with are not addressed via antibiotic therapy. And I don’t beleive anyone that tells me that these abx are only acting on select microbes in the SI.ftderParticipantNovember 12, 2014 at 1:08 amPost count: 210
Pam and Jaeme
Sorry to post a general question here but I am just starting out. My worst symptoms are gas and bloating. As soon as I start eating lunch and dinner, I start getting a very gurgly lower abdomen and have gas. I have had two days following the diet but just got the jasmine rice today, so have not made any yet. I was eating 1/2 cup per day of white rice cereal which seems to have a high GI and carbs. It is just called “Cream of Rice” so maybe it is not the right kind. I am still having bloating and gas after two days. Is it just too early for me to expect results, given that I have had SIBO for at least 2 years? I am thinking maybe I should try the jasmine for a few days and if not, go back to meat and veggies. Not sure how long it would be good to do that? Also, did eggs bother either of you? I don’t know if they are giving me problems. Thanks for your thoughts!PamParticipantNovember 12, 2014 at 1:38 amPost count: 52
Try enteric coated peppermint oil capsules, or drink some ginger/pepperment tea.
At the other extreme you could try activated charcoal it absorbs gas and helps with pain, it is NOT “GAS X”; this product only helps reduce bubbling in the gut but does not absorb the gas. This is per my SIBO information that I got somewhere : )
Eggs have always been a problem with me they just turn my stomach unless cooked exactly how I like them. They may be a little hard on you.
Anyone else have ideas?ftderParticipantNovember 12, 2014 at 1:52 amPost count: 210
Other than those excellent stop-gap measures, do you think it ok if I continue with Norm’s diet as planned (small portion of jasmine rice and moderate lactose-free dairy?)
Or do I need to go more extreme? I do not have bladder pain these days or any so far on Norm’s diet. Pam, did you revert to meat and veggies because of bladder pain, or other digestive symptoms? Tx!!PamParticipantNovember 12, 2014 at 3:37 pmPost count: 52
Just to kind of let you know how sick I was. After 10 years of IC and trying everything, I was to the point of a surgical option called an Interstim Device. The Device is an electronic pacemaker for the bladder, this involved implanting a pacemaker into my butt cheek and electrodes that extended into the sacrum into the spinal cord. From there I would operate my bladder thru a remote control device. This is how bad my IC was. I am bringing this up so you can understand why my IC was so extreme that I was looking for some serious treatment. I cannot even describe to you how emotionally distraught I was over this. I just could not do this and cancelled my surgery 4 days before the procedure.
Fast forward, the SIBO connection where I researched and found the IC/SIBO connection, was tested and have this. Because my IC and pain were so severe I took Rifaximin for 10 days. We are all fairly educated about the dangers of antibiotics, but, this was an extreme case where I did not want to mess with this problem. And, Rifaximin is allegedly 95% absorbed into the gut, not really systemic, one of the reasons it probably costs so much. After this 10 day treatment the pain has subsided dramatically but still having bowel issues so under the guidance of my nutritionist I went on two herbal antibiotics berberine and allicin (chemical derivative of garlic). And my diet was very extreme, I think I told you already how strict that was.
I am telling you this to give you a background on what I did to get a grip on this monster. I am today using Norm’s diet as a maintenance. If you are not feeling any pain since beginning Norm’s diet it is the first step towards healing so if I were you I would stay on course. As I recall during my healing it was two steps forward one step back and it took me about 3 months before I really saw big changes.
Hope this helps?
PamftderParticipantNovember 12, 2014 at 5:02 pmPost count: 210
Pam, THANKS! Thanks for sharing your story. IC is a horrid chronic condition. And the treatment options in the west are beyond barbaric (instillations, TENS, vicodin, anti anxiety and depression medications. Just horrible). I found my doctor within 2 months of getting IC and credit her with getting me to where I am now. I hope to have further improvements now with Norm’s guidelines. I know I have low stomach acid, probably inadequate bile production, impaired motility because of the microflora changes. This all started in my early 20s. This is something people really, really need to get a sense of. Chronic health problems are the result of accumilated assults on the body, particularly on gut flora, through multiple exposures and lifestyle/behaviour.
I hope Norm’s webmaster can add a feature whereby peope can contact eachother outside the forum as an option. I can tell you a lot more about my treatment if you have any setbacks the ICAMA doctors could be an option for you.
Thanks for your input and support!!!JaemeParticipantNovember 13, 2014 at 4:13 amPost count: 348
Hi Bearsmom – Yes, only two days on the diet is rather short, and there will be adjustment periods as the microbes “battle it out” for dominance and re-balance (don’t get discouraged as this can go off and on for a few months, but should get progressively better). And yes, if you look at the FP points for different rices, they vary from -3 for Jasmine to very high for Basmati. I steer clear of rice unless I know exactly what kind it is (of course cooking only Jasmine at home), and Norm advised the same even when it comes to rice products like noodles and cereal (could be made from any type of rice). As a general rule, Indian food is usually Basmati but Thai food is often Jasmine (I get some really weird stares and responses when I ask at restaurants, including “The bag says white rice”). Norm does advise to try small amounts of the rice, stop for a while if it bothers you, try again and then after two weeks try to add in a little more. Use a digital kitchen scale rather than measuring cups, as the weight can vary widely depending on how you pack the measuring cup, amount of water in the rice, etc.
Eggs do not bother me at all, and I eat them quite often now. But since the FTD diet showed me my problem is starch/whole grain digestion, I was fortunate that other trigger groups like lactose & fructose do not bother me. So I keep bread/grains/beans to a minimum, and take an amylase enzyme and Beano if I eat those foods.
For the first several months I took some supplements that helped, ate a lot of lacto-fermented foods, drank lots of water. I cut back on the supplements as my digestive tract healed. I still take a probiotic (very important to get one that is labeled “delayed release” or “enteric coated” so it makes it into the intestine -otherwise its digested in the stomach and is worthless). I will post again in the next day or two with a complete list of what I took.ftderParticipantNovember 13, 2014 at 4:28 amPost count: 210
Jaeme thank you SO MUCH! If I did not have yours and Pam’s support, I might be tempted not to stick with the diet. It goes against a few of my doctors recommendations, and even though she is spot on about a lot of things, she tends to use fiber-type things to keep my bowels moving like cashews, green apples, etc… now I know to back off on that stuff. I would love any tips you have on constipation. I have been relying on magnesium and hope that will not have to go on forever. I would love to see this nightmare of bloating come to and end. I am so tired of it. I used to be a fitness instructor, and for 2 years I have not fit in any of my clothes. I look 4 months pregnant by the end of the day!
Jaeme is there somewhere in the book that mentions how many ounces or grams of rice to eat, besides the 1/2 cup? I ordered a kitchen scale. THANKS!JaemeParticipantNovember 13, 2014 at 5:01 amPost count: 348
Glad to help bearsmom – it was others on this forum that kept me sane and strong when I started. I know how much the support here helps – I had so many questions and everyone was great with answers and words of encouragement.
My nutritionist did have concerns about the lack of “traditional” fiber, but I eat a lot of salads (I add greens to my eggs when I cook them, I have a big salad at lunch and a smaller one at dinner), drink a lot of water, and eat a lot of veggies (and not much bread-type foods). I think the probiotic has been a big help, and I do take some magnesium citrate tablet at night (only 200 mg a day now, was at 400 mg when I first started diet – don’t mind the 200 as it is less than the daily RDA and has some other health benefits). The first few months of the diet my main snack was 1/8-1/4 cup macadmia nuts (best fatty acid profile) and one medjool date (but if fructose is your problem, would skip the date). Again, as the gut adjusts I did have some bouts of constipation in the beginning, but I am regular every day now for the last 7-8 months. My weight is right where it should be, and I fit into pants I wore back in college 25 years ago – a very nice perk of the FTD diet along with good health, skin and energy.
The FP charts in the back of the book have a serving size in both ounces and grams. I think in the beginning I cut the rice from 150 grams to 75 grams or even less- I will have to weigh one of the frozen bags of rice I still have in the freezer I pre-portioned out.
So please hang in there, and lean on the rest of us for support. As I used to quote the Red Green Show “I’m pulling for you, we’re all in this together.”ftderParticipantNovember 13, 2014 at 5:17 amPost count: 210
Jaeme, THANKS!! Your support is invaluable.
Yes, I am used to eating a lot of salads and sauteed greens with a dab of butter. I eat yellow squash or zuchinni too (I think Norm said one half cup serving is ok?). For a snack, I had been eating about 10 cashews. I was having some cashews with each meal, per my doctor, because my constipation. But I read somewhere norm suggested to watch the nuts. I guess if I keep to his recommendation of no more than 2 ounces per day, that is 30 cashews. I think I should stay underneath that! I love avocodo too but will watch my portions.
My favorite easy breakfast is plain, full fat greek yogurt and blueberries (listed in his first menu recommendation). Do you think it is ok if I eat this most mornings and not follow all of the breakfast ideas? I have to get the kids to school!
Also, Ihave been meaning to ask Norm (eek, he gets so many questions from me!) about maybe a link between SIBO and acne. I realize acne is a very complicated thing, but I have had it for as long as I have had IBS, which is probably 25 years. I have oily skin and my skin clogs very easily (not the cystic/hormonal kind of acne at all). And it is DRY underneath the oil. Lovely. I hope this will improve too!!HappinessParticipantNovember 13, 2014 at 3:56 pmPost count: 2
I would like to add something that hasn’t been mentioned yet just in case it helps anyone! My mum is one of the Dr’s mentioned here having success with IC/SIBO/Candida
A HUGE issue she sees time and again in resistant cases of SIBO, candida and IC – is gluten sensitvity and cross reactive gluten foods. This is a new test, far far more sensitive than the old crappy coeliac tests.http://www.cyrexlabs.com/
Explanation of it in laymans terms:
Basically if you are gluten sensitive, your body, once that reaction is activated – even if gluten is taken out, can still stay in its state of inflammation and antibody production – due to thinking you’re still ingesting gluten because you have been eating a cross reactive food.
I think some of the new tests we have for so called ‘environmental illnesses’ are truly wonderful. You don’t have to spend a fortune and have everything. But gaining a real picture of the inflammation, intolerances, current yeast/bacteria levels – not only helps design the appropriate protocol, but also then helps you measure your progress. It also guides a practitioner to know when to sign you off as healed. Rather than ‘asymptomatic’ with underlying weakness still that could well relapse. Having followed a treatment approach with no testing for quite some time – I don’t believe it is safe longer term. Get under the guidance of someone who can really root out the CAUSE of this. Many great naturopaths are onto this and can support you.
My mum is finding this gluten connection in a great deal of IC/IBS/IBD patients, and when they remove the offending cross reactive foods, the system can calm, and SIBO and Candida respond much better to treatment, as does the entire immune system. She also tests for intoelrances ect. Anything that is undermining progress.
Personally I feel anyone with an illness that is showing any signs of auto immunity, fatigue, joint, gut, neurological signs, should not be eating gluten. I think in the coming years the knowedge emerging about gluten’s role in creating auto immune responses and gut permeability will be much more meanstream as we are starting to look increasingly at the human microbiome and its role in our health and disease. Another article for anyone as geeky as me interested in this:
Interestingly I keep seeing how IC is this HUGELY complex terrible long term illness to treat. It is only my humble opinion (of which many are wrong so please don’t let this offend you!) – but I do actually disagree. If you find the root and you have the right approach because you’ve systematically searched and found that cause/causes – then the fire in the immune reaction and inflammation should begin to go out and gut begin to heal, and consequently everything else. I write this as someone who had/has IC also and has learnt a great deal along the way. I don’t want to mimimise anyone’s suffering or experience in any way. I know only too well how hard it is. I mean this purely from the perspective of how it is treated.
just bought the book and hugely interested in incorperating elements into my program! will probably come back with a boat load of questions. Reading the forums is really interesting its a lovely environment!ftderParticipantNovember 13, 2014 at 5:36 pmPost count: 210
Happiness, I think you make some very important observations. Dr. Robillard is the first one to suggest looking at gluten and he responded to some of these concerns you raise in a response to one of the amazon book reviews. I will excerpt it here and provid a link. The thing about this diet, is we are talking about 4-8 million people with IC, all being told to follow a low acid diet by their urologists with very mixed results. From a public health perspective, the Fast Track Diet could have a huge impact on reducing symptoms for many, many people that for whatever reason are not going to go the holistic route and pay for Cyrex Assay tests, etc… This diet is SO easy to implement, and if it provides dramatic relief for many people in a matter of weeks (in terms of reduction in burping, heartburn, gas, bloating, and other digestive concerns) then it is a huge step in the right direction. With taking out a large amount of the undigested, unabsorbed food, the bad microbes can’t thrive, and the body, via cleansing waves can start to move some of this bad stuff out of the small intestine.
Dr. Robillard: (The full exchange can be found in the link I provided at the bottom of this post.
I appreciate your ideas and perspectives on the challenges of addressing SIBO and IBS. I would like to make a few clarifications and share my perspective on low GI foods as well as cross-reactivity with gluten and food elimination based on immune-reactive foods in general, so that others might also benefit.
The Fast Tract Diet (FTD) is not an elimination diet, but a systematic approach to limit fermentation potential (FP). The overall carb-count for the recipes in the book is approximately 75 grams per day, significantly lower than what is recommended by the ADA for diabetics. However, my recommendation for people with diabetes or other carb-driven metabolic conditions is a ketogenic diet. I do not recommend lower GI foods if they have high carb counts, because those foods would have a high FP, potentially driving symptoms. There is a significant amount of literature out there recommending high carb, low GI foods, but I am convinced those very foods cause and perpetuate SIBO.
While I believe that limiting difficult-to-digest, but fermentable carbs will be enough to address most people’s IBS symptoms, for certain individuals, there may be other underlying causes contributing to SIBO and IBS for. Chapter 8 addresses these potential underlying causes including motility issues, antibiotics usage, loss of stomach acidity, immune dysfunction, and specific carbohydrate malabsorption issues, such as fructose or lactose intolerance. I am convinced that both leaky gut and digestive malabsorption will be improved by the Fast Tract Diet as long as these other underlying causes are identified and addressed when they exist.
Cross-reactivity of gluten with other foods and foods that elicit their own antibody response are interesting topics. My approach is to control inflammation and leaky gut by the Fast Tract Diet first, instead of trying to limit every food possible that might exhibit cross reactivity or elicit an antibody response. If we have rabbits getting into our garden, we could choose to eliminate them, or we could fix the fence.
Food elimination diets for IBS based on IgG testing may be an interesting area of study, but at the writing of my book, the evidence wasn’t there to justify highlighting this approach. Food elimination diets based on antibody testing was not a very effective means of controlling symptoms in a randomized study of 150 patients with IBS. Only 10% showed symptomatic improvement (http://www.ncbi.nlm.nih.gov/pubmed/15361495). I agree with the commentary of J.O. Hunter http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774875/#r8) on the problems with this study and the likelihood that this approach won’t help most people with IBS. Even the author’s (P.J. Whorwell) rebuttel stated that “it is likely that only a subset of patients have an immuno-inflammatory basis to their condition and these might be the very individuals who respond to dietary exclusion based on IgG antibodies. This would fit with our results where only a proportion of patients responded despite all having antibodies.”
Regarding the Cyrex Labs list of foods that cross react with gluten, they have a tough case to make for celiac disease. In the study supporting the tests (http://www.scirp.org/Journal/PaperInformation.aspx?paperID=26626), polyclonal rabbit anti-α-gliadin antibodies were evaluated for cross-reactivity against milk, yeast, casein, coffee bean extract, instant coffee, millet, corn, and rice. In most cases, whole foods were used presenting a huge number of molecular targets to a huge array of polyclonal rabbit antibodies. It would be surprising if there was not some level of cross-reactivity detected. The authors also noted that a significant amount of cross-reactivity was caused by the presence of gluten contaminating the test foods. Another important point the authors don’t address is what their results mean in terms of invoking symptoms in celiac patients. There is no work that I am aware of that shows that avoiding foods that cross-react with α-gliadin results in symptomatic improvement in celiac disease or people with other digestive diseases. This work may exist, but I have not found it. If you know of this work, please share it with me and I will take a look.
There is another Ocam’s razor explanation that may better explain the persistence of symptoms in 30% of celiac patients on a gluten free diet – resistant starch (RS) and other difficult-to-digest carbohydrates. Though gluten free diets have less resistant starch than the standard American diet (SAD) because three specific grains are removed, gluten-free diets do allow non-gluten grains and other foods including a variety of rice, potatoes, legumes, millet, tapioca, fruits including higher fructose fruits, high RS bananas, table sugar, and a number of other baked goods. Thus, gluten free diets still contain large quantities of the five carbohydrates the Fast Tract Diet limits in order to control bacterial overgrowth. The presence of too many of these carbs may continue to drive inflammation, leaky gut and villus destruction on a gluten-free diet precisely because they are high FP.
On a personal note, I wish you the best in finding the solution that works best for you.”HappinessParticipantNovember 13, 2014 at 6:17 pmPost count: 2
I agree as a starting point this diet is FAR superior to the one commonly subscribed for IC and I applaud the author for making this so easy to access and follow. The background on other diets and their pitfalls is clear and it makes sense. However – when you’re talking about IC, as apposed to just SIBO, you are talking about auto immune activation to some extent and a severely compromised system.
The author says: My approach is to control inflammation and leaky gut by the Fast Tract Diet first, instead of trying to limit every food possible that might exhibit cross reactivity or elicit an antibody response. If we have rabbits getting into our garden, we could choose to eliminate them, or we could fix the fence.
However, if the fence is being irrevocably damaged by a gluten rabbit – you’d need to get rid of that rabbit before fixing the fence! Not all people will have a gluten sensitivity. But a lot will with IC, it can be like a silent fire in the gut with no real symptoms of ‘intolerance’, and more and more research is pointing to the evidence of it being a cornerstone in auto immune disease and disease in general. Therefore I think it is still worth raising because of the nature of IC. Yes taking out everything shouldn’t be necessary, and people won’t always have the inclination or means to test, but they should be aware of the potential implications of gluten for their recovery. Just like my mum’s approach, and your specialists approach, this authors approach has brilliant pieces of the puzzle, but you cannot cut and paste approaches for unique individuals.
For example using aspartame and artificial sweeteners as recommended – would in someone immune compromised with IC be a total disaster. This isn’t a criticism, just a reminder I think that for each of us there’s a need to find our own path and knowledge and not wholly rely on one approach. There are some GAPS principles that I think are crucial for IC healing. Some are wholly inappropriate. Same with auto immune paleo. We are so unique that I do think the best route for all is to learn as much as we can about all these fantastic routes then under guidance if possible – see what works for our own individual biochemistry and healing.
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