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06-02-2015, 04:57 PM   #1
hugh
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"Half Of All The Literature Is False"

"The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue. Afflicted by studies with small sample sizes, tiny effects, invalid exploratory analyses, and flagrant conflicts of interest, together with an obsession for pursuing fashionable trends of dubious importance, science has taken a turn towards darkness.”
Dr. Richard Horton
http://www.collective-evolution.com/...ture-is-false/
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06-02-2015, 09:56 PM   #2
wildbill_52280
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HA! So some of the science is bad, I think we knew this already.
Just like their are bad carpenters, doctors, dentists etc. Not everyone can be a great scientist or anything all the time, people make mistakes and cant always perform at the highest level.

I see they are also talking about the structure of the field and how it values innovative works over reconfirming the findings of other studies. But I would think that even in the process of innovative research, you can simultaneously confirm prior research. I'm sure every scientist knows one single study could be flawed or untrue, but this information still has value and can be included in building a theoretical model to build on and inspire new research. Even if one study is well documented and reproducable, but not yet reconfirmed, this is usually how it would work anyways. When an alternative and contradicting observation is found that is usually mentioned within a published paper anyways, even if the sole purpose of the paper/inquiry wasn't to confirm prior research. And frequently you will have two or three studies that disagree with each other for whatever reason, and a consensus might be generally drawn from what evidence exists, then you really have look within the methodology to see how they came to their conclusions to re-evaluate these conclusions.


Regardless of the problems that currently exist within science, the practice of science has grown so much over the last century, it's not really worse then it ever was, it's better then it ever was and yet still could be better. And the bad information we have about the destructive effects of antibiotics on the microbiome shows that the science that exited for the past 70 years on antibiotics is also "bad",so science as a whole is better and getting better, in my opinion.
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Last edited by wildbill_52280; 06-02-2015 at 10:13 PM.
06-02-2015, 10:25 PM   #3
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Most papers are peer reviewed have a better chance of being true
That said you can always find at least one study proving what ever it is you decided to prove or disprove
When you find multiple studies published on the same concept the odds are more in your favor .

Just my two cents
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06-02-2015, 10:29 PM   #4
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what i find most disturbing is that now a lot of medical research is funded by Pharmaceutics. research should be independant in order to avoid bias. There is inevitably a bias when one of the actors (often main actor) has a financial interest in a cause. so one can wonder which interests are more important in the end, the patient's or the financial actor's?
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06-02-2015, 10:35 PM   #5
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The problem is research is not free
People do work and want paid for it
I want paid for my job I do at work
Grants and govt funds only go so far.
All conflicts of interest have to be disclosed so I don't see it as an issue
Again single study funded or multiple studies funded by the same drug company fall under a single study in my book
Lots of different studies by more than the one drug company better imo
06-02-2015, 11:15 PM   #6
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So does it follow then that the other half is true? Look guys, none of us here are in the labs doing the research. We share our personal experiences, what we may come across on the internet, or what we hear from our friends or family. We need the scientists and researchers out there pursuing their field. Let's cut them some slack. And the Big Pharma everyone likes to bash. Like it or not, they are the only ones who have the wherewithal to ultimately give us what we are all so desperately in search of. Only the profit motive will ultimately yield our salvation.
06-02-2015, 11:34 PM   #7
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we have come to think that remedies can mostly be of pharmaceutical nature since most of research is done this way. a lot of natural avenues, non-pharmacological, are left unexplored because of this trend and this is what I find unfortunate and biased.
06-03-2015, 08:18 AM   #8
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what i find most disturbing is that now a lot of medical research is funded by Pharmaceutics. research should be independant in order to avoid bias. There is inevitably a bias when one of the actors (often main actor) has a financial interest in a cause. so one can wonder which interests are more important in the end, the patient's or the financial actor's?

Research takes a lot of effort and a TON of money. Governments and regulatory agencies don't put forth either. Pharm companies do. What SHOULD happen is that their should be external oversight (FDA?) and internal oversight (Board members of drug companies and stockholders really like to avoid lawsuits- Vioxx, avandia anyone?)

I have no problem with drug companies making billiions so long as what they do is honest. Most of the time they are. Again, coverups and bad results don't look good in the press or the courtroom especially when big verdicts are handed down. A few bad apples though can spoil the entire bunch. What is more disheartening is when the FDA sits on their rears not doing their jobs.

Without drug comapanies this entire board would be on prednisone right now and nothing else. Look at some the exciting potential pipeline stuff. QBECO/SSI? all biotech driven. Hopefully the fact they are affiliated now with university researchers, clinicians, and has gov't oversight means something. But don't kid yourself. This is biotech driven.
06-03-2015, 09:25 AM   #9
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yes i understand completly and I am glad we still have other options than pred. However, I may be dreaming, but I belive pharma drugs may be second best option. There is a whole area of science that is left in the dark. Because of lack of gvmt funding, other types of treatments or avenues are left aside or are under-explored even after some interesting pilot studies or primarily results. The subject of diet is the classic example. This subject raises so much debate and discussion among patients, but it is not represented at all at this this level in the scientific world. I am glad a project such as the IBD-AID diet is getting funding at the University of Massachussetts and seems to be still going on right now after primarily very good results. Dietary guidelines or natural treatments explorations are lacking, contrary to patients' demand. Science is only dipping its feet into it right now, pressure from patients forcing things a bit I imagine.
06-03-2015, 10:44 AM   #10
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yes i understand completly and I am glad we still have other options than pred. However, I may be dreaming, but I belive pharma drugs may be second best option. There is a whole area of science that is left in the dark. Because of lack of gvmt funding, other types of treatments or avenues are left aside or are under-explored even after some interesting pilot studies or primarily results. The subject of diet is the classic example. This subject raises so much debate and discussion among patients, but it is not represented at all at this this level in the scientific world. I am glad a project such as the IBD-AID diet is getting funding at the University of Massachussetts and seems to be still going on right now after primarily very good results. Dietary guidelines or natural treatments explorations are lacking, contrary to patients' demand. Science is only dipping its feet into it right now, pressure from patients forcing things a bit I imagine.

Researchers go where the evidence goes. And I would argue that the vast majority of human beings would just pop a pill to make something better rather than restrict their food or lifestyle choices.

Keep in mind also that diet studies are REALLY hard to conduct. Again, look at SSI/QBECO, or FMT or other interventions where there is so much oversight and tracking. How much oversight does one really have over a diet study? Want to study SCD? great. Show me your study design. Promise me all folks will have the same amount of SCD yogurt, honey, and don't accidently ingest a flake of garlic powder. Are you controlling for other meds? What your exclusion criteria for your diet study? what is our end point? Are we looking at mucosal healing? just CDAI? Most people, having nothing to do with IBD, report feeling better and have more energy when starting any perceived healthier diet, so how are you accounting for possible placebo effect? What is your control group eating during this time?

And diet recommendations change every day. Coffee is bad for you. Coffee is good for you. Eggs will raise your cholesterol. Eggs won't raise your cholesterol. Whole grains are good for you. Whole grains are bad for you. 8 glasses of water is good for you. 8 glasses of water is bad for you.

The other problem with studying diet is dietary tolerances are so differnt from person to person having NOTHING to do with IBD. Look at alcohol, caffeine, salt, fiber. All treat people with normal GI systems differnetly. How can you make a conclusion from a study which would have no blinding and poor control to a general population. Nearly impossible.

I hate to say this, but as important as diet may be in IBD, and it certainly is, and while it would be nice to see some nicely designed and executed diet studies in the literature, at the end of the day we need to conduct our own study with one host. Ourselves. Frankly, I know what I tolerate. I know what keeps things calm and I know what mucks things up, regardless of whether it appears on a stupid legal or illegal list or what some study might show. Find what works and doesn't work for you- track it with following blood work, imaging and scopes/biopsies and you will know a ton more than any study will ever tell you, or what some book based on pediatric case 40 years ago will tell you.
06-03-2015, 12:12 PM   #11
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When I was diagnosed, I was curious about food and the scientific answer I was given was'' food has nothing to do with crohns'' and ''there is nothing to do in this regard''. I listened to my doctor and didnt explore furthermore for 10 years, until I read the book by Dr Jean Seignalet. Im pretty sure a lot of patients are still being given similar answers as of today as no clear scientific evidence has been studied. Not everyone has the initiative to play with diet and not everyone can pinpoint food problems/intolerance. I wish for more studies to know if guidance can be offerered or not in this regard or corroborate or not with the findings of Seignalet for instance. There are also some herbal therapies such as wheat grass juice which has demonstrated interesting result in one single study in UC, tumeric, cannabis, too and others if im correct. I wish for replicas of these researches in order to know if they can take place in the scientific knowledge. As of today, I feel they are being discriminated over pharmaceutical options. I am super glad fecal transplant is getting funding as a non-pharma option and I hope many more studies on the subject will continue.
06-03-2015, 12:52 PM   #12
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I hate to say this, but as important as diet may be in IBD, and it certainly is, and while it would be nice to see some nicely designed and executed diet studies in the literature, at the end of the day we need to conduct our own study with one host. Ourselves. Frankly, I know what I tolerate. I know what keeps things calm and I know what mucks things up, regardless of whether it appears on a stupid legal or illegal list or what some study might show. Find what works and doesn't work for you- track it with following blood work, imaging and scopes/biopsies and you will know a ton more than any study will ever tell you, or what some book based on pediatric case 40 years ago will tell you.
nicely said. I generally eat the same thing every day at the same time so whenever I add anything new I know exactly how it effects my body. Its kind of like what they call an elimination diet, where you start off with a very stripped down simplified diet then add a new food every week to see how it affects you. But I started with some ideas from SCD diet and evaluated the ideas in the book one by one. I tested them to verify them with scientific methods on myself. I establish a control(comparison) period and then a test period which i document all independant and dependant variables as many as i can think of , then make a decision based on comparing symptoms. After a while I dont really have to follow a very long control period because i generally know where i am at with my symptoms and know what "normal" is for me so when I'm testing anything new i can judge very well what something is doing to me, allowing me to detect very small improvement or declines. I have made lots of interesting discoveries this way. I compared different brands of vegetables and experianced massive declines making me question the level and type of herbicides and pesticides that exist on our food supply, and similar experiance with wheat, and now I'm suspecting some diet supplement that contain carboxylmethylcellulose to increase my symptoms as well.

Last edited by wildbill_52280; 06-03-2015 at 03:24 PM.
06-03-2015, 01:29 PM   #13
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I'm with Lady Organic on this. Despite the difficulties with studying diet, I'm still pleased to see these studies done and would like more research into diet and Crohn's to be done. I feel that the responses here by baistuff and wildbill show a lack of awareness that it is very difficult (or in some cases impossible) for some people to disentangle their response to various foods against the changing background of their IBD. Don't get me wrong, it's great if you can, but if you can't then the studies (despite their flaws and limitations) offer some hope of formulating a good IBD diet. Also the idea that we all have the luxury of time to experiment on ourselves by trying different diets is wrong - for some people with Crohn's this is a dangerous course as while we experiment permanent damage is being done. I don't think there will ever be a one-size fits all Crohn's diet but I do think that further research into diets stands to benefit those wanting to take a dietary approach and to reduce some of the individual experimenting required to pursue this path and increase the chance of success for more people.
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06-03-2015, 01:58 PM   #14
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Did anyone see the report about how chocolate can be good for you? I saw a response that the report was put out there to see how easy it is to report false data!
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06-03-2015, 03:03 PM   #15
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I'm with Lady Organic on this. Despite the difficulties with studying diet, I'm still pleased to see these studies done and would like more research into diet and Crohn's to be done. I feel that the responses here by baistuff and wildbill show a lack of awareness that it is very difficult (or in some cases impossible) for some people to disentangle their response to various foods against the changing background of their IBD. Don't get me wrong, it's great if you can, but if you can't then the studies (despite their flaws and limitations) offer some hope of formulating a good IBD diet. Also the idea that we all have the luxury of time to experiment on ourselves by trying different diets is wrong - for some people with Crohn's this is a dangerous course as while we experiment permanent damage is being done. I don't think there will ever be a one-size fits all Crohn's diet but I do think that further research into diets stands to benefit those wanting to take a dietary approach and to reduce some of the individual experimenting required to pursue this path and increase the chance of success for more people.


So you don't have time or luxury to experiment on yourself, but you have time to wait for studies, which take years to design, get approved, enroll people, find exclusion criteria, will not be blinded, are difficult to control, measure and make deductions, then reproduce for validity and consistency. get peer reviewed and edited and finally printed. I think you lost me there.

I'm all for researching diet. I just think that by definition any findings from them will have to be taken with a grain of salt (no pun intended,) and even earth shatterning will have no bearing on whether I can tolerate the recommendation.

At least with drug X, I can make an informed decision based on a number of published studies and my docs experience that I have 1% chance of an adverse reaction 5% of making myself worse 50% of remission.

With food, I can simply eliminate foods. Get a basline of symptoms, labs, whatever. then slowly add a food back and see where I go. As an example, for me, rice is a savior. calms my gut. I tolerate it really well. No symptoms whatsoever. After weeks/months of being on rice I had a fecal cal and CRP which were normal and felt fine. What difference now does it make to me if someone studies rice? The findings will be meaningless. Nuts bother me. Always have (maybe it's a mild allergy and not IBD? who knows?) But b/c SCD says nuts are fine, does that mean I should take it? We have our own lab, host, and data output staring us in the mirror. Most of us know what food will do to us within 48 hours. Do I need a study to back it up? Do I want companies, gov't or universities spending time and money on this? Sure, it would be nice to have some evidence on big picture level, but I don't see that paying off with major changes in individual management.

Now, is there benefit just to help make docs/patients aware of the importance of diet and IBD? maybe- and that attention would be good. But beyond that the application I think would be limited, and that, among many other reasons stated in previous posts makes this area of study a lot less sexier for those in research to pursue.

BTW... regardless of where one's opinion is on this- good discussion.
06-03-2015, 03:03 PM   #16
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Did anyone see the report about how chocolate can be good for you? I saw a response that the report was put out there to see how easy it is to report false data!
http://io9.com/i-fooled-millions-int...ght-1707251800
Our paper was accepted for publication by multiple journals within 24 hours. Needless to say, we faced no peer review at all. The eager suitor we ultimately chose was the the International Archives of Medicine. It used to be run by the giant publisher BioMedCentral, but recently changed hands. The new publisher’s CEO, Carlos Vasquez, emailed Johannes to let him know that we had produced an “outstanding manuscript,” and that for just 600 Euros it “could be accepted directly in our premier journal.”
I wasn't surprised that's how they did this. It was by manipulating some aspect of statistical significance. I've ALWAYS had a problem with this concept in regards to the goals of science attaining absolute certainty. To me there is nothing conclusive about statistical significance, it's still a probable result but not a very certain one, depending on things like how the study was constructed.

Last edited by wildbill_52280; 06-05-2015 at 01:35 PM.
06-03-2015, 03:22 PM   #17
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Even if there were numerous studies on diet(my son's GI group was involved in a multicenter SCD study) you would still be spending time trying that diet to see if it was right for you. So whether it has scientific backing or not the same amount of time would be involved in seeing if it work for you as an individual. It is the same with any other treatment.

Also, elimination diets and food diaries are common advice when dealing with any number of GI issues IBD included. Those are time consuming, for some they produce results for others they don't. That seems to be the commonality between all treatments, they can be time consuming and sometimes don't produce positive results, study or no study.
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06-03-2015, 03:43 PM   #18
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baistuff - I agree with you that pharmaceutical companies provide vital funding. But is diet so much harder to research than medications? If the main issue is controlling other factors, isn't that just as true for medications? And the same with deciding what counts as effective improvements when assessing results? And accounting for placebo effects? It may be harder to convince people to stick to a diet than to take a pill in order to conduct research, but if all the other difficulties faced in research can be overcome adequately when researching meds, is it that much harder with diet?

Lady Organic:

When I was diagnosed, I was curious about food and the scientific answer I was given was'' food has nothing to do with crohns'' and ''there is nothing to do in this regard''.
I don't think your experience here is universal, though it may be common. My doctors don't see food as the main part of treatment (and I don't think there's evidence to suggest they should), but they do see diet as a factor, and take my nutrition extremely seriously. It may be a very different approach to diet to that hoped for by SCD advocates and similar, but my doctors at one point carefully brought me from bowel rest to liquids to soft food to solid food; provided TPN, supplements, NG feeding, etc.; recommended low fibre diets; explained food restrictions to avoid stoma blockages; recommended the FODMAP diet at one point (at least I think that's the diet they recommended - I didn't want to do it and turned down the suggestion); and so on, so some doctors take diet and nutrition very seriously. Or at least most doctors take certain aspects of diet very seriously and base this on research that has been conducted. They are at least very aware of and concerned about food and its effects on the digestive system in the context of different medical conditions.

(I have not yet read all of this thread yet, so sorry if I repeated anything already said.)
06-03-2015, 04:38 PM   #19
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baistuff, I don't think it is all that hard to understand. I tried the experiment on myself and I ran out of time while the disease progressed. It happens. It's happened to others too.

I quite possibly won't have the time to benefit from the research on diets myself but since I am not only interested in the benefit for myself then I still consider them worthwhile, despite their admitted limitations.

I'm not nearly as interested in these results for myself as I am for the whole Crohn's population.

Clash, sorry I don't agree. I think that the diets that are studied like IBD-AID, Paleo/SCD etc. are time-saving for some of us compared with starting with elimination diets and the infinite variations. And while they will of course be improved with individual tailoring, they may still be beneficial as compared with an unrestricted diet for many. I believe these diets are also more approachable for many compared with an elimination diet and therefore allow more people to benefit from some dietary therapy. I don't mean that these would be sufficient therapies to use to treat Crohn's but may have benefit as an adjunctive therapy.

I'm not saying that anyone should ignore the feedback they get from their own bodies about the food they eat - if eating something makes you feel unwell, of course you shouldn't eat it regardless of what any studies say. I don't think there's any way my previous post could be thought to be saying otherwise! But it is simply not true that you can know all that you need to about a food within 48 hours when it's not as simple as merely observing a reaction to that food. You won't get feedback about the effect of your diet on the bacteria in your gut for longer than 48 hours! And you can't just look at each individual food but the overall balance of your diet.
06-03-2015, 05:39 PM   #20
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Some of those diets have been studied. SCD, for example has been studied in pediatric Crohn's disease. There have been positive results and definitely indications for further study. But, if you browse through the Parents Section you will find a number of parents who spent months trying to make SCD work for their child. Why? Because it can take that long for the diet or any other treatment to start working. SCD is rigorous and time consuming, no one can refute that. And the majority of the parents have had to move on from SCD..

So just like with Remicade(with a 6-8 week lead time) or Imuran(3 month lead time) or an elimination diet(3 month lead time), though a study may show it effective for some it doesn't mean then that you won't be spending the luxury of time trying to figure out if it is effective for you. And also deciding if the diet itself isn't beneficial or if certain "legal" foods you are having trouble with because that is very possible depending on the variability and individuality of the disease and each person it affects.



I would agree with the diets getting more scientific study and it seems they are but scientific study isn't going to make them any less time consuming that keeping a food diary or an elimination diet. There is a protocol in the elimination diet for you to follow.

And I agree that the elimination diet won't work for everyone(but nothing does), my son for example has no outward symptoms toward food. He doesn't feel any different whether he eats pizza or onions or rice or chicken. He also only saw a difference in SCD pertaining to weight loss which he didn't need but we still trialed it for a few months though we didn't have the luxury of time and eventually opted to up his MTX and reduce the time between remicade doses.

Last edited by Clash; 06-03-2015 at 06:45 PM.
06-03-2015, 07:33 PM   #21
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Clash - sorry, I'm not understanding your point, because I do think the SCD trials have been useful, though of course it doesn't seem to be a workable monotherapy for most people. I still consider those trials to have been worthwhile.

The fact that there don't seem to be workable monotherapy dietary treatments for the majority of people doesn't convince me that diet shouldn't be studied further. Do I think it's the only part of the puzzle, now or even ever? No, but I still think we need to understand the role diet plays better.

At least until we cure Crohn's, there will be Crohnies and Crohnies will have to eat. So surely it makes sense that we should understand the role that diet can play in our disease, even if just for symptomatic relief and/or peace of mind?

One of the things that I would hope that further trials of diets and research of diets (or in fact any treatments) might eventually tell us is who would most benefit - so that there would be less time wasted on diets (or any other treatments) that won't help certain subsets of Crohnies.

I do think that there are advancements that could be made in our understanding of diets by doing research that would be different from the knowledge that can be gained by experimenting only on ourselves (and that was really the only point I initially wanted to make)

We can agree to disagree on pre-defined diet protocols being time-saving/more approachable/useful for sections of the Crohn's populations, yes? Because I've either observed different samples of Crohnies than you or am thinking about it differently or have been unable to communicate my meaning adequately, but I have definitely observed (and this is backed up by some studies too) that some people either have no response to food or can't correctly identify foods that are triggers for them in blind-challenges or when re-challenged. They just don't respond in such a way that they can identify those foods. And yet I do not believe that that means no pre-formulated diet can be useful.

And we will have to agree to disagree over more studies making treatments (dietary or otherwise) less likely to "waste" our time (and precious healthy bowel). Because quite honestly I think that is our major hope - that they will better understand which subsets of Crohnies will benefit from which treatments, and target our treatments better, giving us increased odds on each treatment we try actually successfully treating our version of Crohn's disease.

We're not there yet. The research done so far may be imperfect but we're certainly in a better place than we were 30 years ago. And I have faith that even if "half of all the literature is false" that those well designed and carried out studies in amongst the other half will get us inexorably closer to what we all want - cures for our Crohn's disease(s).
06-03-2015, 07:50 PM   #22
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DS is on a diet from a study ( single study )
Although there are many other studies with similar diets
Is he also on meds - definitely
Is everything on the study diet ok for his gut - not so much
So in his case he stays on formula only adding one food at a time back into his diet figuring out what works for him as an individual .
The study diet was just a guide
http://www.ncbi.nlm.nih.gov/m/pubmed/24983973/
06-03-2015, 07:50 PM   #23
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24601, I can see you don't understand my point. Let me try to clarify I was responding to this statement in your above post:

I feel that the responses here by baistuff and wildbill show a lack of awareness that it is very difficult (or in some cases impossible) for some people to disentangle their response to various foods against the changing background of their IBD. Don't get me wrong, it's great if you can, but if you can't then the studies (despite their flaws and limitations) offer some hope of formulating a good IBD diet. Also the idea that we all have the luxury of time to experiment on ourselves by trying different diets is wrong - for some people with Crohn's this is a dangerous course as while we experiment permanent damage is being done.
My point is whether a diet, be it SCD or Elimination diet or meds like remicade or Imuran, have scientific study backing them or not, the same amount of time is spent experimenting whether they will be effective for you. If one fails like SCD and you are diet oriented then you may next try elimination diet or another scientifically based diet just like meds.

You clearly stated that some people don't have the luxury of time but elimination diets span the same amount of time as diets like SCD or meds like Imuran. So the comments that wildbill and baistuff made related to food diaries or elimination diets weren't made with a lack of awareness.

I never said that studies into diet weren't warranted.
06-03-2015, 08:17 PM   #24
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The lack of awareness judgement related to the idea that we can all do what they do - identify each food individually that causes symptoms. Some people can't. I stand by that. So their proposal that we could each go through an elimination diet type scenario as they do, and that this is a better alternative than the dietary studies for everyone, is IMO wrong.

I think elimination diets are good for some and not for others. I do not believe they can replace research into diet and studies of dietary treatments for everyone.

I also disagree with you that the same amount of time is spent trying SCD or any pre-set diet (or med) than an elimination diet. I think your 3 month lead time for an elimination diet doesn't really cover it, if you add foods really carefully (as I believe you have to) it takes a long time to add in a reasonable healthy range of foods, so I still say it is a more time-consuming proposition than 3 months on SCD, which some would consider giving that a fair go. And as you are adding new foods, each week or each month (as baistuff did), you do I think need the input of monitoring with bloods and fecal calpro that frequently too - and most people simply don't get that level of monitoring. If you follow one diet, as set out by whatever protocol minus any foods you know you react badly to, then that can at least be a constant and if you do that for 3 months with some testing over that period then you can draw a conclusion as to whether that diet is benefitting you and keep it or discard it. With an elimination diet, you'll be lucky if you've got 12 foods added back in by then.

Now you might say, that none of the current diets are that beneficial for anyone (or that they aren't beneficial for everyone or the majority of people or whatever) so you should do the elimination diet as that is the only possible (or likely) way to get a beneficial diet for you. But whatever your view on that, I don't think that is the point, because we are talking about research moving things forward, so the diets that may be developed in the future could be better and also targetted to the subsets of patients for which they will work. So yes, I do want to see more research into diet and Crohn's because I do think it has the possibility to take us to a better place than where we are and be time-saving over each patient starting from scratch with an elimination diet.

Now I don't want this to sound like arguing, but I don't see where I said that you did say that studies into diet weren't warranted. I didn't, I think we are in agreement! Yay! (tone: genuine!) But you did say this
but scientific study isn't going to make them any less time consuming that keeping a food diary or an elimination diet
And that is where our difference lies because I do think more studies could further our knowledge so that they are less time-consuming and have increased chances of working.
06-03-2015, 08:45 PM   #25
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How many scientific studies have been done on remicade? What is the resulting time to determine efficacy? Even after that time most are advised to up the dose or shorten the schedule this is done for another few infusions. More time without full response warrants the addition of another med and trialing that for some time. All this is done because numerous scientific studies have shown that dropping a biologic can mean losing it as an option since there is the risk of creating antibodies. As the studies have progressed with Remicade the more time consuming the med trial has become. In the beginning, Remicade was trialed as episodic treatment which led to the discovery of antibody formation after episodic use.

I completely agree that more studies need to be done on diets and how they can affect CD. I just believe that what baistuff and wildbill posted above isn't a lack of awareness, its what they have found works for them and I disagree that that luxury of time issues disappear if you choose SCD or Paleo over elimination.
06-03-2015, 09:05 PM   #26
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Yes, but believing that what works for you (here we are talking about an elimination approach to diet) works for everyone, in the face of evidence that it doesn't work for others is by definition lack of awareness.

I don't think I said the luxury of time disappears when you choose SCD/Paleo/any set diet over elimination but I said I believe that it can save time for some (and future dietary research may save far more) therefore studies into set diets aren't redundant because "we can all just do an elimination diet and that would be better anyway" - which is what baistuff and wildbill seemed to be saying.

I think I've said all I have to say here. And if there are indeed any points of disagreement then you and I, Clash, can agree to disagree.

I'm certain you hope for the best for future Crohn's research as I do. So ultimately we agree on the most important thing. I'm going to be leaving it there.
06-04-2015, 12:12 AM   #27
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Again, I'm replying without reading all the thread. I have a short attention span; if I read to the end I'll have forgotten what I wanted to say in response to something earlier in the thread.

So you don't have time or luxury to experiment on yourself, but you have time to wait for studies, which take years to design, get approved, enroll people, find exclusion criteria, will not be blinded, are difficult to control, measure and make deductions, then reproduce for validity and consistency. get peer reviewed and edited and finally printed. I think you lost me there.
I think 24601 meant that not everyone (especially when unwell) has the time and energy to devote a significant part of that time and energy towards thinking about food every day. Which is very different from living as well as one can whilst, hopefully, research into diet is carried out by professionals.

Additionally, not everyone has the ability to conduct adequate scientific experiments on themselves. Not everyone understands what a placebo effect is, or how to minimise results being changed by other factors, or how to recognise when unavoidable other factors are responsible for changes in results. Not everyone has the knowledge of how to conduct experiments on one's own diet safely, without compromising one's health - which is made even harder when the person in question has a serious illness. And not every person with Crohn's has a stable base line with consistent symptoms from which to start experimentation.

I mentioned above that conventional medicine has already established some guidelines on diet. When I recovered from surgery and a perforated bowel, or when I needed to avoid stoma blosckages, it was made so much easier by the fact that research has already established how to use diet in these kinds of situations, even though it's at a general level and doesn't really take into account my individual digestive system and disease status.

Last edited by UnXmas; 06-04-2015 at 08:25 AM.
06-04-2015, 07:42 AM   #28
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I have a buddy that works in insurance and says that he regularly has to look at whether or not to approve drugs that perform equal to or worse than placebo in clinical trials.

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06-04-2015, 08:05 AM   #29
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[QUOTE=UnXmas;869483]baistuff - I agree with you that pharmaceutical companies provide vital funding. But is diet so much harder to research than medications? If the main issue is controlling other factors, isn't that just as true for medications? And the same with deciding what counts as effective improvements when assessing results? And accounting for placebo effects? It may be harder to convince people to stick to a diet than to take a pill in order to conduct research, but if all the other difficulties faced in research can be overcome adequately when researching meds, is it that much harder with diet?


I think it is. Many of the med studies have specific exclusion criteria- being on certain other meds, prior surgery, age etc..... it doesn't eliminate all pitfalls but controls for a lot. Keep in mind that many meds go through different phases. Phase I- safety- let's make sure this med doesn't cause you to die, bleed, go into liver, kidney failure. Then if it doesn't we start to look at different levels of response (Phase II/III.) Many even have animal studies completed first. Then We have a control group to make sure the response is real, look for placebo effect, other effects. Then is has to be reproduced. Though many med studies are done at home, many are also done in an MD's office or lab (especially if an IV or SQ med.) Also what are you time controls. If I know Med X will appear in the blood in X time and cleared by the liver, kidney in X time, and it takes X time for this metabolite to build up and do it's thing and those with just inflammatory disease takes X number of weeks to heal, I can conclude that in X weeks, I would expect to see tangible improvement on labs/scope.

How do you design this for a diet? It's not impossible but it's really hard. And a med is usually new product not like food which we already know how we tolerate. And what if someone was at a wedding at accidently just tried a teeny tiny piece of cake? Are they dropped from the study? do they start over? What if they thought was diet soda was regular soda and had corn syrup. Does the amount matter? Where are your cutoffs?

What I am sensing from the forum is that there is a desire to see AWARENESS of the importance of diet out there and research can aide with that. Agreed. I just wouldn't put much stock into any diet study to have implications on an individual level. The SCD study in kids is interesting for sure. I'm sure it has helped many. The fact remains that any conclusion other than "diet is important" would be hard to come by.

I'm not saying don't study it. The more we can learn about IBD the better. I just wouldn't hang my hat on the details of a diet study changing the trajectory of IBD outcomes on an individual level.
06-04-2015, 08:51 AM   #30
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[QUOTE=baistuff;869622]
baistuff - I agree with you that pharmaceutical companies provide vital funding. But is diet so much harder to research than medications? If the main issue is controlling other factors, isn't that just as true for medications? And the same with deciding what counts as effective improvements when assessing results? And accounting for placebo effects? It may be harder to convince people to stick to a diet than to take a pill in order to conduct research, but if all the other difficulties faced in research can be overcome adequately when researching meds, is it that much harder with diet?


I think it is. Many of the med studies have specific exclusion criteria- being on certain other meds, prior surgery, age etc..... it doesn't eliminate all pitfalls but controls for a lot. Keep in mind that many meds go through different phases. Phase I- safety- let's make sure this med doesn't cause you to die, bleed, go into liver, kidney failure. Then if it doesn't we start to look at different levels of response (Phase II/III.) Many even have animal studies completed first. Then We have a control group to make sure the response is real, look for placebo effect, other effects. Then is has to be reproduced. Though many med studies are done at home, many are also done in an MD's office or lab (especially if an IV or SQ med.) Also what are you time controls. If I know Med X will appear in the blood in X time and cleared by the liver, kidney in X time, and it takes X time for this metabolite to build up and do it's thing and those with just inflammatory disease takes X number of weeks to heal, I can conclude that in X weeks, I would expect to see tangible improvement on labs/scope.

How do you design this for a diet? It's not impossible but it's really hard. And a med is usually new product not like food which we already know how we tolerate. And what if someone was at a wedding at accidently just tried a teeny tiny piece of cake? Are they dropped from the study? do they start over? What if they thought was diet soda was regular soda and had corn syrup. Does the amount matter? Where are your cutoffs?

What I am sensing from the forum is that there is a desire to see AWARENESS of the importance of diet out there and research can aide with that. Agreed. I just wouldn't put much stock into any diet study to have implications on an individual level. The SCD study in kids is interesting for sure. I'm sure it has helped many. The fact remains that any conclusion other than "diet is important" would be hard to come by.

I'm not saying don't study it. The more we can learn about IBD the better. I just wouldn't hang my hat on the details of a diet study changing the trajectory of IBD outcomes on an individual level.
Until we know more about the prime cause of Crohn's it's hard to understand why the diet varies from patient to patient, but if we knew the cause we probably wouldn't need to know the diet.

Conversely you can follow the clues of diet backwards.

There's so many factors in diet though. If I improve on a diet it could be elimination of a harmful substance, or inclusion of a needed one.

If it's a trigger food, why is it a trigger? Is it because my bleeding and inflamed intestine can't handle seeds passing through it? Is it because the poor digestion of a simple sugar causes an immune response or overgrowth of harmful bacteria?

There's just so many variables and they could differ for each patient.

If crohn's is caused by a dysbiosis, that dysbiosis could be a little, or a lot different for each patient. The difference in bile salts that break down food can vary. Unfortunately our digestion is complicated and it seems poorly understood, especially with the variety of chemicals in modern food.

If an experimental diet induces remission in 75% of patients, then are the 25% remaining not responsive to diet, or just not responsive to that particular diet?

Then you have cascade effects. Like what if I primarily have gluten sensitivity, and that caused inflammation which caused poor absorption of FODMAPS leading to SIBO which increased leaky gut and caused further sensitivity to amines or other grains? Then did something cause the gluten sensitivity? How far back to the bread crumbs go?

I think it's important to follow all these breadcrumbs, because they'll lead us to answers.
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