# IBS as an autoimmune condition: CDT-B & molecular mimicry



## tummyrumbles

I recently posted in the DIET section about the link between starch, molecular mimicry and gut pathogens. Basically a particular pathogen called Klebsiella feeds on non-fibre dietary starch. The bacteria makes a carbohydrate degrading enzyme called HLA-B27 that mimics proteins in our body. In an autoimmune disease called Ankylosing Spondylitis the immune system recognises the Klebsiella as a foreign invader but HLA-B27 also mimics the body's collagen protein, which the immune system also attacks, causing arthritis.

The link between Ankylosing Spondilitis, Crohns Disease, Klebsiella and starch consumption
http://www.ncbi.nlm....les/PMC3678459/

Dr Pimentel, a renowned SIBO researcher is researching a bacterial toxin called CDT-B. Antibodies to vinculin might provide a conclusive test for IBS. (Thanks to Airplane for pointing this out)

http://www.gihepnews.com/index.php?id=16301&type=98&tx_ttnews[tt_news]=224465&cHash=da03e20e36

IBS / SIBO can be caused from a bout of gastroenteritis. A bacterial toxin called CDT-B is produced by a gram negative bacteria such as Shigella and e coli. This toxin triggers gastroenteritis by molecular mimicry, (the same strategy also used by Klebsiella as above) which stimulates auto-antibodies to vinculin, a protein that helps fight pathogenic gut bacteria, causing inflammation in IBS.

Molecular mimicry is an important part of autoimmune disease and occurs with Celiac Disease. The gliadin molecule in wheat is an allergen that resembles a self-protein in the gut. In Celiac Disease the immune system attacks both the gliadin and the proteins in the gut, causing inflammation.

The link below is a discussion on this and the effect on IBS/SIBO. (Allison Siebecker works with Dr Pimentel and recommends a low starch diet to combat IBS/SIBO.)

the following is her explanation from 
http://balancedbites.com/2014/04/podcast-episode-135-special-guest-allison-siebecker.html

..this is all the work of Dr. Mark Pimentel, who is the lead researcher on SIBO..what happens is, this protein on the nerve, it's called vinculin, and the nerve cell is called the interstitial cell of cajal, and abbreviated as ICC. And these cells are pacemaker cells in the small intestine that are necessary for doing the migrating motor complex

http://digestivehealthinstitute.org/2014/02/19/ibs-autoimmune-condition/

http://www.gihepnews.com/index.php?id=16301&type=98&tx_ttnews[tt_news]=224465&cHash=da03e20e36

http://www.direct-ms.org/molecularmimicry.html


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## AIRPLANE

Yes, I love listening to Dr Allison Siebecker. Also Dr Steven Sandburg-Lewis who works at the same naturopathic clinic in Portland Oregon as she does and is a teacher of naturopathic medicine. He did write a book awhile back and Dr Siebecker is currently working on one. She has dealt with digestive difficulties herself so she understands the problems we have very well. She seems extremely motivated to get to the root of these things. And she is very up-front about how often things can change because there is a lot of new information coming out constantly, which can mean that what is thought to be causing these problems and the suggested treatments, can seem like they are always being updated.

I have wondered about the post-infectious possibility. I do remember having two instances of illness with diarrhea at ages 11 and 12. Prior to that I don't remember ever having diarrhea. Growing up, my mother, siblings and I would get sick once every fall with a bug where we would throw up for about 24 hours, but we didn't get diarrhea. I have read that having only vomiting from a bug is much less likely to lead to post-infectious IBS which makes sense. If you get diarrhea then the effect of the bug obviously has an effect on a larger portion of the gastrointestinal system.

And it was around that same time that I began having constipation problems- age 11-12. My older sister said that she had had the same problem at that age so we just assumed it had to do with going through puberty and it would go away. Of course it never did- it just changed through the decades.

Will be interested to hear if the blood test for the vinculin antibodies becomes available. Awhile back I heard it might even be available this year. Though I doubt if it would be widely available for quite some time as there still don't seem to be many gastroenterologists who even want to talk about SIBO, which we have known about for several years now. We'd likely have to be willing to travel to Los Angeles where Dr Pimentel works to get it. Although Dr Siebecker does offer phone and Skype appointments and can order tests through the mail if there were a lab to send it to for evaluation. She just can't write any prescriptions without seeing a patient in person. But she often has non-prescription alternative ideas to try as well.

This is from a couple of years ago, but gives a brief view into the anti-vinculin antibody research by Dr Pimentel.

http://www.medpagetoday.com/MeetingCoverage/ACG/42282


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## kals

too molecular for me, im the basic


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## tummyrumbles

Thanks so much Airplane. I'll copy & paste the info from that link you sent me down the bottom for those who haven't read it.

Have you seen this?

http://ibsworkshop2014.com/descargas/PIMENTEL-IBS.pdf

(the following is quoted from this website)

Future Directions for Possible Cure

FDA approval of Rifaximin • Remove the antibody to vinculin from the blood • Immunize against ever developing IBS • Turn on vinculin - New drug development • Stop methane production • Measure Hydrogen Sulfide • A new blood test for IBS

Why hasn't he suggested dietary change? Does he leave that side of things to Dr Allison Siebecker? So people just continue with their bad diets and the Rifaximin makes IBS go away? I've seen in other studies of his where he claims a high success rate with Rifaximin but most posts I've read say the IBS/SIBO returns after a few weeks. It was interesting that they don't view it as molecular mimicry or they're not sure about this. It makes it sound as though the bacteria is deliberating targeting vinculin(?). It sounds like the pathogens are doing this to protect themselves. Very interesting anyway. Please update if you find out any more news about this.

(the following text is quoted from this link)

http://www.medpagetoday.com/MeetingCoverage/ACG/42282

"Irritable bowel syndrome has been a diagnosis of exclusion, where we first have to rule out all sorts of other diseases and then apply the Rome criteria. But those criteria aren't specific, and in one study we found that only 67% of IBS patients met those criteria," he said.

There has not been a valid biomarker of the disorder, so most patients undergo extensive and expensive testing.

To address this diagnostic gap, he and his colleagues have been exploring the pathophysiology of IBS, and have found that in many cases, the condition arises after an episode of gastroenteritis, with bacterial overgrowth in the small intestine resulting from neuromuscular damage.

Animal models showed that a specific toxin produced by gastroenteritis-causing bacteria such as Campylobacter jejuni known as cytolethal distending toxin B (CdtB) can precipitate IBS.

So Pimentel's group developed an antibody to the CdtB toxin and applied it to full thickness biopsies of rat intestine, and found that the antibody bound strongly to all the neuromuscular elements, but in both exposed and control animals.

"So the antibodies to CdtB were reacting to something that was part of the host, not to the presence of the toxin," he explained.

Then, through a series of experiments, they considered if this was molecular mimicry, but eventually with immunoprecipitation testing determined that the antibody was targeting the human protein vinculin, which is important for nerve cell migration.

They also considered the possibility that exposure to the toxin led to the development of antibodies that could react to CdtB epitopes, and whether through homology perhaps one epitope produced an autoantibody to the protein.

"Our hypothesis was that in humans, some people never had gastroenteritis, never developed antibodies to CdtB or vinculin, and never developed IBS. Or they did have gastroenteritis, produced the antibodies, and then developed IBS," he said.


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## AIRPLANE

No, I had not seen that information although I can't really decipher the charts. But it is nice to know that someone is trying to figure things out. I did find another article similar to the one I posted where Dr Pimentel was trying to make his case among other Drs for this new theory of IBS and the blood test. It quoted another Dr who was being skeptical, who said something to the effect that 'we don't need a test to tell us who has digestive issues and who doesn't' and that the test wasn't ready for prime-time but conceded that maybe in the future it could be useful. To view it you had to sign up with the site so the link wouldn't work here. It mostly just showed how difficult it can be for a Dr to get his peers to be open to new ideas, even though they themselves don't have any better ones.

Dr Pimentel said that it was his career goal to have IBS viewed as a disease rather than the syndrome like it has been for the past 20 or more years, like supposedly being caused by lifestyle choices. Which makes sense- as we have discussed here, why can some people eat a food with little or no problems, while some of us suffer big-time from the same food. And why didn't these foods bother us before we got the so-called IBS? Yes, there can be things like heredity (like Asians reacting worse than others to dairy because it hasn't been part of their culture so they lack the digestive enzymes for it) but that would be one of the exceptions, I would think.

When you mentioned the part where it sounds like maybe pathogens are protecting themselves, it reminded me of the biofilm train of thought. I have never heard of Dr Pimentel mentioning biofilms, but so far that is the only idea I have heard that might explain antibiotic-resistance, and why some people initially do great with Rifaximin or other antibiotics, but if the SIBO returns and they try it again, it may not work again. And this can happen with other health issues as well. Had I known more about antibiotic-resistance- and the possible negative effects on my microbiome- sooner, I never would have taken repeated courses of Tetracycline for acne in my early 20s which never helped the acne for long anyway. Every time I finished taking the Tetracycline, the acne came back worse. I finally got on Accutane which is what I wanted in the first place but the Dr was stubborn about giving it to me because it was controversial due to possibly causing birth defects if used during pregnancy. I told him that wouldn't be an issue for me but he still refused. Many in the medical field are now recommending the development of newer, 'Narrow Spectrum' antibiotics that only target what needs to be treated, and to stop using the current wide-spectrum ones so much. But that still doesn't sound like it would be the total answer either. Seems like the more we learn about bacteria, the more we are realizing just how strong and intelligent they can be when their survival is threatened.

Dr Pimentel did give dietary guidelines in his book. It isn't as strict as most of the other diets. I remember he said absolutely no artificial sweeteners, no dairy or high-residue foods. Mostly to eat foods that are easy to digest and are absorbed higher up in the GI tract. He said that sugar was bacteria's favorite food so we should limit that. I don't think that things like FODmaps were being talked about at the time. When I tried the low-carb diet a couple of years ago, I had read William Davis's book 'Wheat Belly'. I still have the book-maybe I should read it again. It is difficult though. I gave up eating meat and poultry in my teens and have no desire to eat them. I do eat seafood but it can be difficult because you hear so much about antibiotic-laden, sometimes mislabeled contaminated fish raised in filthy conditions, besides the mercury. It is easier to figure out what NOT to eat than it is figuring out what TO eat!


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## tummyrumbles

Dr Pimentel's diet is the exact opposite of what I've been doing the last week - and my diet has been working very well (when I don't overdo the nuts). Everyone with IBS tells doctors that fibre causes worse symptoms and I used to say this too. I guess after a while the doctors believe it and tell IBS sufferers to go easy on the fibre and that a low residue diet is best but this is where it gets tricky.

For me, a high residue diet is something that doesn't digest normally. Baked beans don't digest fully for anyone, and this is normal for all of us, so I'd expect a bit of indigestion from these because to a certain extent so does everyone else. But starch is digested OK by most people. So if I can't digest it properly, then this is malabsorption, which is much more worrying than simple indigestion. It's the food that causes malabsorption that is high residue for me, and those foods, starches, are what Dr Pimentel calls low residue! These foods don't usually cause a lot of digestion gas, but they can cause a lot of gas the next day if they're not eliminated properly.

Remember how you said in one of your other posts that enzymes stop producing if you stop eating a food? I've been eating salad veges every day now for the past few weeks and there's little to no gas from them, even lettuce and carrot. But one day about a year ago I had salad for lunch and I remember my colon lurching around and I thought - this isn't good, and went back to having toast for lunch as this scared me. But I was still getting chronic gas in the afternoons and my IBS wasn't getting better because the food residue from the starch was causing gas the next day. So you have to build up your enzymes and the particular bacteria that feeds on vegetables gradually. Fibre that you're used to doesn't cause inflammation, it's fibre that you're not used to that does this. Vegetables aren't naturally inflammatory but something that is artificially made - like refined starch and sugar - is inflammatory because, although this has yet to be proved, these foods feed pathogens. Everyone with IBS is constipated, including IBS-D, it's just that IBS-D has much worse inflammation than us.

So I think this is why Rifaximin and other antibiotics only work temporarily, because we keep feeding the harmful bacteria. Biofilms are a bit contentious but I think anything is possible because pathogens seem to be devious characters. I'm hopeful of a biomarker for IBS but I wish they'd do some tests on starches. How did they find out that Klebsiella favours starch as a food source, for instance. What other pathogens prefer starch and sugar for their fuel source. Maybe all of them?

Generally, I think meat and fish are safe for IBS. I'm eating more meat now because of the low starch diet. You need meat and fats to fill up on, otherwise you'd be hungry all the time. Hunger is the worse thing when you're trying to get better. For me meat and fats are a bit of a godsend.


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## AIRPLANE

I know that currently there is a lot of questioning about the previous recommendations to eat low fat and to instead fill up on so-called 'healthy whole grains' which I remember they started pushing back in the 1970s. There was an article not too long ago in my local newspaper about the Dr who first started pushing this. He was from my part of the country. The newspaper article spoke about how he had cherry-picked his information, how he ignored any statistics that didn't support his recommendations or even contradicted them. I don't recall the name of the Dr who I think is now deceased. Dr William Davis talked about this some in 'Wheat Belly'. That way of eating has really backfired and has resulted in more diabetes and weight gain, even in fairly active people. And of course the food manufacturers have been producing so-called low-fat foods that only substitute a lot of junk to replace the lack of fat.

When I get a chance I will have to read the entire interview with Dr Siebecker in the link you gave as I see it mentions resistant starch. I agree that Dr Pimentel probably isn't as knowledgeable about diet as Dr Siebecker. I am familiar with low-carb but am not quite sure how that differs from low or resistant starch. I do try to eat only whole foods and avoid packaged convenience, 'just add water' junk. I do have a piece of gluten-free toast with almond butter and a small serving of organic, gluten-free granola in the morning with one cup of black tea. Dr Davis doesn't approve of most gluten-free products because they contain a lot of junk ingredients so I pretty much only have the one piece of toast a day.If I had the time (and a bigger kitchen which is shared by others) I would try making my own bread with nut flour as he suggests. One thing I disagree with is that he thinks Xylitol is a safe sugar substitute- which I heard Norm Robillard does too. I think Stevia leaf is the only safe alternative sweetener, and even then there are only a few brands that don't have added ingredients or alcohols.

Using lettuce for a bread substitute is a good idea. There is a gourmet submarine sandwich shop that offers that. I also sometimes just put what I normally would have had as a sandwich in a salad- tuna, olives, tomato, etc. I am reading your diet diary and hope you continue to have good results. I imagine it is a bit of a balancing act. The meat could be constipating, but the fat and some of the vegetables should help. I hear about a lot of people consuming coconut oil lately. I did buy a jar of it awhile back but wasn't sure what to do with it so ended up throwing it away. But I see it more and more in the grocery stores lately so it must be popular. Also it seems like juicing is pretty popular but not sure if it would make some of the vegetables-like kale- more tolerable. I do think I react badly to high-sulfur foods- both vegetable ones and eggs. The gas they give me is very crampy, hot and foul so must avoid. Eggs are OK as an ingredient but I can't eat them whole which is too bad. I loved them as a child, plus they are a good source of nutrients for a healthy head of hair.


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## tummyrumbles

Thanks re: the food diary, it's a bit topsy turvy at the moment. You have to be really careful with nut bread and I'm not sure it's suitable for IBS. A cup of almond flour has about 90 almonds in it! I'll paste the link to this. This is a lot of fibre and might be inflammatory. The concentrated fatty acids are inflammatory as well. If you want to try gluten-free baking, why not try coconut flour? I posted a paleo recipe for coconut cake and I'll try to find this too.

I think a lot of doctors just want to make a name for themselves. You need to have IBS before you suggest a diet for IBS. It's the sort of thing you have to understand first hand. I was thinking today about the bacteria discussions and wondering if I actually had pathogens so I arranged for a script from the doctor for a stool test. I'll have that done next week. I think a lot of what we do is just over-compensating. My father had a sluggish colon and my grandmother on my other side had digestive problems. I told you about my daughter who had no IBS problems at all but she got diarrhea when her partner didn't after both had food poisoning. I'm guessing there's a genetic link somewhere but I'm not certain you could actually find a cure for it. The gene might have started things off but I suspect I've got a lazy colon from years of not really paying much attention to it. You can't undo decades of history like that with an antibiotic. So much is tied in with motility and the brain as well. Doctors tend to over-simplify things but even if a gene is found there's probably hundreds of other genes as well, all doing slightly different things. The salads that I have during the day are overcompensating for a sluggish motility. I don't really believe that I'm curing the IBS - it's more like I'll do whatever I can not to have IBS symptoms in public.

I think low carb means restricting all carbs - starches and fibre, whereas low starch is just restricting starch, which is what I'm doing. If you can tolerate fibre and it doesn't cause spasms or gas or anything then I think fibre is helpful but you've got to be really careful with it. If you get really strong gas from anything, especially if it lasts a while, that's a sign that that food isn't good for you. I think that's a clue to malabsorption too. Resistant starch is the indigestible fibre of starch. A healthier way to get it is from vegetables like potato or sweet potato rather than grains like wheat or rice but I'm a bit anti-grain at the moment. You have to be careful with vegetable juices too as these can cause diarrhea.

Some people claim scrambled eggs have less sulphites in them.

http://empoweredsustenance.com/avoid-almond-flour/

http://www.quora.com/Why-do-some-people-get-smelly-gas-after-eating-eggs

http://www.ibsgroup.org/forums/topic/180578-paleo-chocolate-coconut-flour-cake-wheat-free/


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## AIRPLANE

I agree wholeheartedly that unless someone has IBS themselves that they probably are not going to give the best advice. What some experts theorize 'should' help with symptoms can turn out to be the worst advice for some of us because as you mentioned, we still likely are not aware of everything that is contributing to it. I disagree with some experts who I otherwise have a lot of respect for. Dr Andrew Weil still seems to push 'healthy whole grains' a lot, even though they can contribute to high blood sugar and obesity (and SIBO) just like any other carbs. When my diarrhea was really bad, all they did was give me more diarrhea. Now they can back me up big-time if I'm not careful. Dr Mark Hyman was on the Dr Oz show the other day and gave what sounds like very outdated advice- doing a food elimination test of dairy, gluten,soy, etc-which is OK if you haven't already but I think anyone who has had these issues for awhile has already done that and is avoiding what makes their symptoms the worst. Then he went on to push probiotics without mentioning that they could be contraindicated for some people- like if they had SIBO which he never even mentioned. Or that what types of probiotics to take depends on the individual.It is not one-size-fits all.

I can't find my copy of Dr Pimentel's book, but from what I remember, I think he would agree that resistant starch (what I call high-fiber or high-residue foods like whole grains) is not good for SIBO because while we don't digest them, the bacteria will. While that is supposedly good for the health of the large intestine (I would assume that is if you don't have dysbiosis there in which case they could cause a flare-up) it is not good for the small intestine if SIBO is present. I do remember that he said if you did eat bread, then white bread was preferable to whole grain because it didn't have so much residue to feed the bacterial overgrowth.

Like you, I try to do whatever it takes to avoid having symptoms in public. And that can mean doing things that some experts would strongly disagree with. When I start having cramps and gas in public, I do take a pain med called Tramadol which seems to calm things down. I know that Dr Siebecker does not like pain meds because they interfere with the MMC and even blames them for the development of SIBO in some people. But when you have to go to a job or somewhere else, you just have to do what is necessary for the short-term while continuing to try other things to prevent symptoms in the first place. That is why, even if I could find a good alternative practitioner to help me figure this out, many of them don't get it that we may have to do things they don't approve of just to function. But that shouldn't mean that we still can't continue working on improving our condition.

Good luck with the stool test. If I wanted one done I would have to do it though the mail since gastroenterologists in my area don't offer them except for checking for blood. I have read of one called the Comprehensive Digestive Stool Analysis being a good one. However, even then I think you can only find out so much. I remember reading of another patient who was seeing an alternative practitioner and had a stool test done. The test results showed a lack of some good bacteria and the practitioner recommended a specific brand of probiotics. The patient said that they were already taking that probiotic. Which makes you wonder just how effective they are, as we discussed previously.


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## AIRPLANE

TummyRumbles- have you seen this?

www.http://www.eurekalert.org/pub_releases/2015-03/cp-igc030615.php

www.http://www.npr.org/blogs/health/2015/03/12/392332922/before-the-gas-is-passed-researchers-aim-to-measure-it-in-the-gut?utm_medium=RSS&utm_campaign=us


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## tummyrumbles

That's very interesting! Thanks for those links. The pills could come in handy for testing on starch malabsorption, or any kind of malabsorption really. Get a normal person and an IBS person to both swallow a pill after eating the same starchy diet and compare gasses at various times. Maybe these pills could tell exactly where the problem lies - enzymes, bacteria? But how could these tests tell you whether the gas came from pathogens or from healthy bacteria?

What issues did Dr Siebecker have? We need more doctors who actually have IBS or something equivalent as their diets would be based on practical experience.

Thanks re the stool test. It'll be interesting to see if I actually do have pathogens so I'll keep you posted on that.

Yes, we have to keep reminding ourselves that these doctors don't actually have IBS. I'm not sure what Dr Pimentel bases his dietary advice on, but recommending that someone eat a problem food like wheat suggests that he doesn't have first hand experience of chronic flatulence. Sue Shepherd the founder of the FODMAP theory has Celiac disease, so her experience is first hand. Maybe that's way the FODMAP theory is so popular because it does help to reduce flatulence. But her diet books if you ever get a chance to look at one in a library is full of recipes for stodgy gluten-free breads which are full of starch. Because she has a specific disease, Celiac, non-wheat breads might be OK for her but then she doesn't have IBS. What if IBS if just starch malabsorption? It's quite possible that the fibre problem is just a red herring! There's not a lot of information on starch malabsorption and I wish Dr Pimentel and other doctors would spend more time researching this - maybe using the new pills!

With the residue issue IBSers might have a gene that affects digestive enzymes so they don't work properly. So any bread is going to be a real problem food if this is the case, whether white or brown. I think vegetable forms of resistant starch will be much easier digested than grain resistant starch simply because usually there's a lot less of it. I don't think Dr Pimentel believes IBS is starch intolerance. I do, because I notice the huge difference a low starch diet makes but this is first hand experience again. He's pretty much in SIBO mind-block and I don't know whether that's good or bad. We just need more practical experiments involving diet, maybe those new pills, anything to help work out where the gas is actually coming from.

It's possible too that somehow all the intestinal gas retards peristalsis. Dr Pimentel came up with the theory that methane causes constipation but he was unable to say exactly how this occurs but all the tests were very convincing. Maybe as we get older and malabsorb starch more and more our bowel evacuations become less complete but we don't notice it. So gradually we become constipated. Maybe the new pills can see the gasses develop and work out how it all happens?


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## AIRPLANE

Dr Siebecker has a history of constipation. She talked about it in one podcast that I watched. Think she talked about bloating issues also. She also said that she will likely never be cured because her SIBO went untreated for so long, which I imagine means that she will always have to be on a restricted diet.

What I'm not sure about regarding the new pill cam is whether it will help diagnose gas in the entire digestive system or only the large intestine. Would hope it would also include the small intestine but it is hard to tell. There are several news articles about it, including in the IBS News Reporter Section where I think there are 12 or more write-ups on it. Since the current SIBO tests don't seem too reliable it would be nice to have an alternative. Sounds like there will be clinical trials for it. If they had one near me I would sign up assuming I met the criteria.

I haven't found my copy of Dr Pimentel's book to look at the sample diet he gave. Have you read his book? It likely is a bit outdated by now. I do think that most Drs aren't big on investigating diets- most of them want you to go to a dietitian if they think you need help with that. Or yes, they give you really bad dietary advice. I had thought that Dr Siebecker's book would be out by now but maybe it got delayed due to how fast information comes out or changes, so then no book about SIBO would be current for very long.


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## tummyrumbles

I think really it all comes down to just experimenting with diet until you find something that gives you the least symptoms. No-one really can ever give you dietary advice for you. You have to figure this out yourself. One person here might have a problem with starches but they're OK with fibre. Others might be the opposite. A healing diet for IBS-C or Leaky Gas might be totally different to one for IBS-D. Most of us don't even know what's wrong with us. That's why all these diets are doomed to failure because it's such a personal thing and we're all still trying to figure things out. I do believe though that certain foods are naturally toxic for everyone with IBS - refined starch and sugar for example, and I wouldn't support any doctor with my cash if they were pushing foods like this, which is why I didn't buy the low FODMAP cookbook. I'm pretty sure grain starches are toxic for everyone with IBS but it's so hard to prove and nothing's conclusive with testing. I don't think fibre is naturally toxic, but it can be inflammatory for an already inflamed colon simply because the natural drive of fibre is to push through. If you've got stodgy stuff in there that's sure to create a lot of gas. In my case, I know what I have to do but this involves a certain level of hunger and I really have to force myself not to overeat because for me this is the biggest trigger.


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## AIRPLANE

I agree with all of that. There really is no one-size-fits-all. It depends on each individual's particular symptoms and tolerances. Also their situation- like are they retired and can function on their own schedule, or do they have to go to a job or school or have to travel a lot. I don't think that any diet plan or book or dietitian can help us figure it out- it has to be trial and error. I know that for many years Drs always pushed fiber like psyllium along with probiotics for just about everyone with IBS. Some still do. But if that really is the solution then why are so many of us having such difficulty with our symptoms. I think that they, along with other experts don't like to admit that they don't really know what is best for everyone. That's why I have never bothered to pay to go to a dietitian because I think it would be wasted money. We probably have done just as much or more research as any of them on diets. Maybe if someone is new to this and doesn't want to do the research themselves then they would benefit but I think they might be disappointed. Although there are some dietitians who do order things like stool tests and might be able to provide some useful insight. One of my favorite books is by a dietitian, Elizabeth Lipski, called "The Digestion Connection". It is a large book and talks about pretty much all digestive topics. She also orders tests for her patients which I think is a good idea since most Drs, in the US at least, are only interested in checking for cancer.

I think it does come down to finding out what causes the least symptoms. As long as we have to eat I think that most of us will always have symptoms. I haven't tried a fast so for all I know I might still have a lot of symptoms even then. I have looked at the proposed pre-digested supplements for fasting, like Vivonex, but they are expensive and contain questionable ingredients. I think Dr Siebecker has a recipe for making your own but don't remember what is in it- I do not consume anything to do with meat or poultry as a personal preference, not for IBS reasons. But even then, that can mess with your metabolism, especially if you gain weight easily, and I imagine that it would be tricky when you started eating again. I remember that in the 1970's there was a fad of using only liquid protein for weight loss but it obviously was short-lived.


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## tummyrumbles

People here on the forums have tried Vivonex but it didn't help, and gave some of them diarrhea. I'm not a fan of these extreme diets for the reasons we've talked about - we're all different and we can't even be sure what is wrong with us. We could have SIBO, maybe not, and even if we had it, I don't think testing on elemental diets is impartial enough to warrant the huge costs for something that just doesn't work long term. The only people that claim huge success stories are those that make money from them. I'm not aware of anyone here who's had long term success with their IBS because of these diets. IBS is caused by wrongful eating, and we have to figure out what that is. It might be eating too much fibre which is too much for your digestion to handle or it could be eating a lot of starches when you have an enzyme malfunction. Or maybe overeating and getting SIBO / GERD / flatulence symptoms as well. It could be like my daughter's case where you get gastro with no previous IBS history and suddenly find yourself with diarrhea after every meal. This isn't anything she did wrong herself - but as far as her colon is concerned a whole lot of fibre after a bacterial infection is inflammatory. It's not that someone in this situation stops eating fibre, because this leads to constipation and a new set of problems. But you have to reduce the fibre. Keep eating vegetables but cook them for longer and concentrate of the blander, low FODMAP vegetables that aren't as gassy. Keep to simple, basic wholefoods and as far as vegetables go, cook them to a watery pulp if that helps. Someone here said they cook their veges for 4 hours. That sounds extreme, but maybe in a week's time they can get it down to 3 hours, then 2, etc. Maybe after a year or so they can cook their veges for 10 minutes.

An exclusion diet makes the most sense to me but if it's done properly you'd expect IBS symptoms to gradually get better. If IBS isn't getting better without a whole lot of meds then it's not being done properly. A lot of people here advise others against eating fibre and I think this is wrong. It's an oversimplification to just say to people - fibre is a problem food here, don't eat it. We have to eat vegetables. If you don't eat vegetables you get constipated, and if you keep this up for too long you get constipation masquarading as diarrhea and a chronically inflammed colon. I know people here who have said pizzas and white rice are the best foods for them, then list a whole lot of things from the chemist they say helped to cure their IBS.


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## AIRPLANE

Came across this more recent SIBO information from Dr Siebecker and Dr Sandburg-Lewis. It gives a link to the less strict Cedars-Sinai diet on page 2. If someone is undergoing antibiotic treatment, Dr Pimentel recommends waiting to start any diet until afterwards because it is thought that the bacteria are not active when they don't have their preferred food sources available.

This article also mentions a third gas, hydrogen sulfide in addition to the hydrogen and methane. I have heard about this third type of gas before but not read much information on it. It says that it should be treated the same as methane.

www.http://www.townsendletter.com/FebMarch2015/sibo0215.html


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## annie7

thanks, Airplane, for that link.

that's the diet i've been following for quite a while.i found it on another website..i don't eat pasta, rice or bread though. like it says, you need to experiment to find what works for you..


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## AIRPLANE

Sounds like you eat pretty low-carb. I did for over a year but have given up on it for the past year or so. I loved the weight loss- some of which has returned but still avoid gluten for the most part and try not to buy too many gluten free products, many of which contain a lot of junk substitutes, have more calories than the gluten-containing ones, and usually contain prebiotics like inulin and chicory which can make symptoms worse. I just didn't feel that I was getting enough symptom relief and still felt constantly bloated. But I may have to reconsider as I liked the lower weight- maybe it compensated a bit for the bloating which makes me feel even heavier.

One thing that I noticed in the Dr Siebecker link was the mention of a probiotic that provided symptom improvement in 82% of the patients that took it. It looks like it was called Bioflora. I tried searching for it. There was one on Amazon with that name but it wasn't the same one- totally different ingredients. What I gathered about probiotics is that you definitely don't want one with prebiotics, and also no Lactobacillus Acidophilus which apparently is found in high amounts in SIBO patients, but I notice that it is a common ingredient in many brands. I looked up one of the strains in the probiotic she mentioned, streptococcus faecalis which I don't think I have seen in any brands, and it sounded like a questionable strain. Still, 82% sounds promising, even though the trial didn't have that many participants. If I could find it I would give it a try.

www.http://www.ncbi.nlm.nih.gov/pubmed/21381407


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## tummyrumbles

Thanks for that link Airplane. Sorry about the really long post ...

Re the Cedars-Sinai dietquoted in italics)

5. *Potatoes, pasta, rice, bread, and cereals are also acceptable*. We do find that some people have difficulty with bread and pasta - you may need to experiment. *It's all right to include some of these foods at each meal. *They contain carbohydrates that are well absorbed high up in the small intestine, serving as fuel for your body, not for the bacteria.

How would a complete stranger, even if he is a doctor, know whether or not you have a particular problem digesting starch?

This is an very good site for explaining the different in starch digestion abilities from person to person:

http://www.precisionnutrition.com/carbohydrate-tolerance-genes

(all of the below is a summary of information on this site)

We're not all alike in terms of carbohydrate digestion. There are natural variations in the gene for amylase, the enzyme that digests starch. CNVs are copy number variations which can create large differences in digesting ability.

The gene that makes amylase, AMY1, varies in copy number from person to person. AMY1 genes have a huge CNV range from 2 to 16 copies. More AMY1 genes means more salivary amylase and more salivary amylase means you break down starch more effectively.

People who have more copies of AMY1 tend to have a lower BMI - i.e. They're not overweight. This could be due to the insulin response. Higher levels of salivary amylase correlate to a higher insulin response. Amylase breaks starch down to glucose, and glucose signals insulin production to that glucose can be used by the cells.

Excess calorie intake (over-eating) can lead to insulin resistance. This is quite complex but too much glucose leads to too much insulin and after a while the body blocks the insulin. This is a very detailed explanation:

Chris Masterjohn - Oxidative Stress & Carbohydrate Intolerance





The following is a summary from this site:

My thoughts on Low Carb and Paleo
http://robbwolf.com/2013/01/09/thoughts-carb-paleo-episode-3-hope/

If insulin is blocked, this leads to impaired response to glucose uptake and this leads to a lower than normal dopamine release. In studies insulin resistant participants had lower dopamine release than healthy people. Lowered dopamine means lower reward, which means a person who overeats doesn't get the same level of satiety that a normal person has, so they tend to overeat to overcompensate for this.

This sets up a vicious cycle. Someone with lower numbers of amylase gene might have a matabolic problem digesting starch because insulin resistance can lead to constant hunger as glucose in the body isn't properly utilised. This can lead to chronic overeating (my problem).

Going back to starch and the Mt Cedar diet:

How do we know whether or not we have a problem digesting starch? The easiest way is to do an exclusion diet and reduce starch as much as possible to see if symptoms improve. This is hard to do because starch is the carbohydrate that we digest. We're going to be hungry on a low starch diet (although it seems to be getting easier). If we don't eat starch the only alternative is typically a high meat/fat diet like the ketogenic diet or a meat and fibre diet (low starch diet). The salads aren't important. I only eat these for variety as I don't want to eat the same thing for lunch and dinner. The important thing is to actually test your level of starch digestibility by reducing it enough to make a difference. Doctors at Mt Cedar or anywhere else have no idea of your personal level of starch intolerance. We don't know ourselves. So how can anyone say "pasta, rice, bread and cereals are also acceptable". Acceptable for who - someone with multiple copies of the gene for amylase?

Also from this website:

"The Specific Carbohydrate Diet has been reported to have an 84% success rate for inflammatory bowel disease, a condition commonly associated with SIBO.82,83 Patients who find the Specific Carbohydrate Diet or SIBO Specific Diet approach too restrictive can follow the Cedars-Sinai diet as described at www.gidoctor.net/diet-ibs-sibo.php."

This is saying the SCD is the preferred diet, but if you can't manage this diet try the Cedars-Sinai diet, which basically says try to eat more fibre but refined starch is OK at every meal. This is a complete contradiction of the SCD.

"Avoid large salads full of raw vegetables, as this can lead to too much residue. You can incorporate small amounts of salad, but do not eat raw vegetables exclusively as they are hard to digest. A good rule of thumb is to have three to five cups of cooked vegetables per day."

Food residue means non-digested food, and salads would be mostly non-digested food, because they're fibre! I don't eat raw vegetables exclusively, I just graze on these during the day. At night I have cooked veges and meat usually.

I worked my way up to salads gradually, and I have always loved vegetables, so fibre generally isn't a problem for me unless I overdo it or eat the wrong kind, like baked beans.

"Food residue" has 2 contexts here. For me, fibre is good food residue, as long as you tolerate it. Fibre isn't digested at all in the small intestine, but some of it does convert to SCFAs in the colon which does provide some calories. So all fibre leads to "food residue". This isn't necessarily what's causing your IBS! You can't lump all food residue in the "bad" category because this is misleading.

"Food residue" isn't necessarily a bad thing. Fibre is food residue by definition. But wheat, pasta, rice, cereals shouldn't be food residue, but I suspect for a lot of us, they are. If you have low copies of the amylase digesting gene, you might have a real problem digesting starches. This could be what IBS is for a lot of us.


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## annie7

Airplane--thanks for the pub med link and the information on bioflora. yes, if i could find it, i'd give it a try, too.

i'm scheduled for the HBT on friday IF i get insurance approval in time which is a big "if" because the hospital always drags it's feet in starting the insurance approval process. i've had tests there fall through in the past because of this problem. no insurance approval = no test.

i just wish my gastro would let me try antibiotic treatment without the test like i've read some gastros do since the test is so inaccurate. i think there's a very good chance i have SIBO because i had open abdominal surgery in 2013 -a right hemicolectomy--during which about 4 inches of distal ileum was also removed. ever since then, my gas and bloating have been so much worse.


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## AIRPLANE

Annie, hope you get to have the test, even if it isn't always accurate it is still one more tool. I would definitely be willing to have it done again, this time after having eaten a few bad foods, but would follow the pre-test diet rules the day before. It wasn't a good time to do the test for a few reasons, including the fact that I was doing a transit test at the same time. Plus it looks like Mayo Clinic, where I had it done, doesn't use the recommended lactulose. Sounds like they use D-Xylose instead which I haven't seen mentioned anywhere else. I didn't know enough at the time to ask, and the Dr I was seeing obviously wasn't interested in SIBO. They didn't discuss the results with me at all or ask me about my history which does include a few bouts of stomach bugs which is a big cause of it as well. If they do offer you treatment you will have some idea of what they should be giving you. I would guess you would tend more towards the methane side which as you read in the link, requires different or more meds than hydrogen.Rifaximin alone, if you could get it or afford it, isn't enough for methane.

I did some searching for the Bioflora probiotic. There are a lot of different products with that name, not just probiotics. Looks like it is made by a company in Argentina named Sidus Laboratories, under the brand name 'Biosidus'. The web sites where I saw the product weren't in English. I tried looking for the 4 ingredients individually but could only find 2 of them at Custom Probiotics, who had the Lactobacillus Casei and Plantarum, but not the Bifidobacterium Brevis or Streptococcus Faecalis. Assuming Bifidobacterium Brevis is the same as Bifidobacterium Breve, I saw that included in some probiotics that had other strains and prebiotics I wouldn't want. I could not find the Streptococcus Faecalis anywhere so am thinking it is not approved in the US.

TummyRumbles, I don't know what to say about the Cedars Sinai diet. It does sound like it isn't Dr Siebecker's first choice either. It is difficult because many of us don't seem to tolerate much of anything and it is just trial and error trying to find what bothers us the least. As mentioned before, it is thought that if we don't eat certain foods for awhile that we lose the enzymes to digest them. And as I think Dr Siebecker mentioned, if you do have SIBO, eating pretty much the same foods repeatedly can also lead to a negative reaction, like an immune response to them. Also, I have heard that some believe that we shouldn't consume any beverages around mealtimes because they might dilute the enzymes, just like with overeating. But that would be hard, especially if you take any meds or supplements that need to be taken with food. Yes, insulin- resistance is a big problem and many think it is due to carbs/starches, even so-called healthy ones.


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## annie7

Airplane--yes, it's really a shame Mayo wasn't interested in SIBO, didn't discuss the test results or your history with you and just general the way they treated you. very unprofessional of them and not at all what one would expect from such a supposedly world class treatment center.

yes i was thinking i'd tend toward methane too but i pretty much keep my constipation under control (more or less) with the laxative regimen my gastros have me on so i don't know how that affects things??

and yes, if i do test positive, the treatment has me a bit worried too because i really don't think my insurance company will cover rifaximin. and i really can't afford to pay out of pocket for it either. maybe once but that's it. last time i checked, inhouse pharmacy has it (generic) but they need a script. might have to go that route. it's a lot cheaper. over on inspire i've read posts from people who got it from inhouse and they were safistied with the service and quality of the med.

and yes i know you have to take an additional antibiotic for methane. i totally cannot take neomycin. i took it once and had permanent ototoxic side effects--it raised the level of my tinnitus permanently. no way can i risk taking this med again. i wish i could. so...well, we'll see...

thanks for your additional information on bioflora...


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