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Oh my,i can't wait to get my life back!
 

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Discussion Starter · #4 ·
I too do hanna. Like I told eric on another thread Rome II which Dr Drossman I think was responsible for does not address atleast 35% of the population on the board. And thn nor does it address the 10% Celiacers, 10% SIBO'ers, 10% fructose malabsorbers, maybe even 10% with motility disorders. So they are leaving out a good chunk of this board in their research.
 

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I agree that many of us who think we have IBS actually have something else with a name and a potential treatment beyond just changing our bowel malfunctions. I also think that would be eric's point about "accurate information." We may not have IBS, just conditions which create similar outcomes. Whether we are serving a useful function or not--other than acting as signposts for others about possible causes--is often hard to determine. What is clear is that some great percentage of the medical community is happy with the IBS diagnosis as it stops them from having to try and find the real cause.Mark
 

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Just to pop in here - and I am my own spokesperson - I neither disagree nor agree with any particular folks who post here - or in the past - everyone is entitled to their own take on the research that is out there - I rarely post articles because I feel that we are all capable of researching IBS from the perspective and aspects we feel are best for our own given situation - nor do I argue points, because everyone is "right" for their own situation. I do feel that because there are so many perspectives to IBS, I want to put in my take on this - again, this is just for a point of reference and perhaps some clarification.
I have attended both the IFFGD Symposium and the DDW, and also have lots of publications of studies from UNC and IFFGD, as well as searches done via Mayo (went to college affiliated with them), and also PubMed, Medline, etc. as well as books on IBS - one from an associate at Mayo Clinic.Firstly, Dr. Drossman of UNC and Dr. Talley of Mayo Clinic, among many many other gastroenterologists, work in the field of gastros who are specialists in functional motility disorders. So each one has various aspects of the condition that they study - it doesn't mean that one is an expert over the over - it means that for the topics they are researching, they present their findings for that topic. It certainly doesn't mean that Dr. Drossman doesn't agree with Dr. Talley's findings that their are multiple facets to IBS. They are all well aware of each others' work. The very fact that the Rome Committee is reconvening shows how the definition of IBS keeps changing as more and more aspects of this condition are revealed and studied - it is an ever changing definition - (and could possibly be perceived differently by gastros not specializing in functional disorders) at what point do the docs exclude one "type" of IBS from the diagnosis - is it the causes that define IBS, or the symptoms? Right now, it's the symptoms - there are many other etiologies that "cause" IBS symptoms - but do we term them as IBS?Secondly, I do believe there are many definitions and causes as to what we call IBS.I think it is in the terminology - or labeling:Many people on this BB do NOT have IBS!!By that I mean, they may present with symptoms that come under the heading of IBS - but a TRUE IBS diagnosis is one for which no physiological dysfunction or cause can be found - it is a disorder of improper function of the motility of the digestive system which manifests in various symptoms of that system, and associated ones. And it is a disorder of exclusion of anything else going on. What happens is that many stop at "just" IBS diagnosis, when something else could come into play - for those individuals, like Bonnie, it is important to make sure there is nothing else that could be causing IBS symptoms.There are many people who may think they have IBS but may have the symptoms of IBS due to:SIBO - small intestine bacterial overgrowthFructose Intolerance - MalabsorbtionLactose IntoleranceGluten Intolerance - Celiac SprueOther food/additive intolerancesFood allergiesGallbladder removaland various other conditions.Once the above conditions are diagnosed and they are treated, USUALLY the IBS-type symptoms will diminish or be alleviated altogether. Then this would tell you it was one of the above condtions, and not "primary" IBS.Now, to add to the quagmire, some folks having the above conditions, may ALSO have IBS in addition to the intolerance, etc. What does this tell us?It tells us that if your IBS does not respond to the various IBS treatments, to ask the doc to make sure nothing else (especially the above conditions) is going on. Then those conditions can be treated. What has happened as this BB community grows, is that more and more folks have other conditions than IBS and are frustrated by not being able to get better, and also become confused.Those are the individuals who come to this bb - then they usually find something that helps - and that could be ANY of the many treatment methods out there. (I am all for whatever works for you, it may not be what worked for me, but I say go for it if it helps!) Accurate information usually refers to those things which can be found in several places - not just one and if your doctor can't answer your questions, find another. I would never ever tell a person not to get a breathe test, or any other evaluation that might solve their gastrointestinal problem. Some of the IBS literature is now calling SIBO a "subset" of IBS - and it would be absolutely awful for someone who has this condition to not be treated for it.The bottom line comes down to this - if you have been tested for everything else, including the above conditions I mentioned, and come up negative, and have been given every med for IBS there is and you still have symptoms, then you probably have IBS. Especially if you are otherwise "healthy" - which by that I mean, your blood count is normal, you are not losing tons of weight, you have no malabsorbtion of your food nutrients, and no bacterial overgrowth, etc. When all other diagnoses don't fit - then it's IBS. But again - you can have IBS AND other conditions as well - so that is really where the dilema lies. The real cause of IBS - when all the other conditions are tested for and ruled out - is unknown.That's my 2 cents worth after reading lots of literature and studies...
 

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Discussion Starter · #8 ·
quote:By that I mean, they may present with symptoms that come under the heading of IBS - but a TRUE IBS diagnosis is one for which no physiological dysfunction or cause can be found - it is a disorder of improper function of the motility of the digestive system which manifests in various symptoms of that system, and associated ones. And it is a disorder of exclusion of anything else going on. What happens is that many stop at "just" IBS diagnosis, when something else could come into play - for those individuals, like Bonnie, it is important to make sure there is nothing else that could be causing IBS symptoms.There are many people who may think they have IBS but may have the symptoms of IBS due to:SIBO - small intestine bacterial overgrowthFructose Intolerance - MalabsorbtionLactose IntoleranceGluten Intolerance - Celiac SprueOther food/additive intolerancesFood allergiesGallbladder removal
I have to slighthly disagree with this. Rome I was also a diagnosis of exclusion. The fact is that only 65% of those diagnosed by Rome I test positive by Rome II. So there is something more which comes to play and that is hypersensitivity. Also disorder of motility for which no cause can be found is not sufficient for it to be IBS. Once again hypersensitivity has to be there to be diagnosed by Rome II as IBS. Now while I agree with you that people who are diagnosed as with IBS on the basis of colonoscopy, endoscopy, tests for parasites and blood tests should not stop there, the fact is doctors don't do tests for CEliac, SIBO and least of all for fructose intolerance. I am curious Marilyn , have you done the fructose intolerance breath test?. I find that many on this board have not done all these additional tests which is why I am drawing attention to it. And I get very frustrated that whenever I try to draw attention to this, eric posts something contrary giving the impression that these tests need not be done, Now while it is true that people who have been truly diagnosed as with IBS by Rome II criteria perhaps needn't do these tests, the fact remaions that many are not diagnosed by these criteria. In fact if I get a chance I will post a quote which shows not only do doctors not diagnose by Rome II, they haven't even heard of Rome. They may have heard of Manning. So I feel it is incumbent on the experts to educate the board about all these different facets and not post something which fits their idea of what "true IBS" is. After all who determines what true IBS is. And if it is Rome II then how come docs in clinical practice haven't widely adopted it. Very rarely does eric talk about the criteria on which his research is based. I wonder how many on the board know what Manning, Rome I or Rome II are and whether they know by which criteria their doctor has diagnosed them by.So I think expets on the board have a duty to encourage the people on this board to do all the different tests you listed instead of pulling the wool over people's eyes by suggesting that these need not be done because these are not "true IBS". The fact remains many people on this board have ben diagnosed by their docs, most probably not by Rome II and others stray on to this board because they found it on the internet and are trying to gt to the root cause of their problems and they should be enouraged to do and not discuraged from doing these tests.
 

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Discussion Starter · #9 ·
As promised here is the quote about docs knowledge of Rome and other criteria
quote:USE OF SYMPTOM CRITERIA IN PRACTICEMost family practitioners who have been questioned have not heard of the Manning or Rome criteria [64], [65], [66] or recognized the Rome II symptoms as typical of IBS [66], and they tended to diagnose IBS with little testing [67], [68]. Sixty-three percent of 100 Dutch family physicians thought that recurrent abdominal pain for more than 3 months was the crucial diagnostic symptom [64]. Of the 142 patients they diagnosed with IBS, 62% had at least two Manning symptoms, but only 18% fulfilled the Rome II criteria. Additional surveys revealed that only 37% of assessed British family practitioners usually diagnosed IBS confidently on the initial visit, and a small group of California general practitioners rated IBS as only fourth in diagnostic confidence out of five chronic, painful syndromes [66].In contrast, 81% and 83% of 200 British gastroenterologists had heard of the Manning and Rome symptoms, respectively, but they used these criteria in evaluating only 37% and 40% of patients [65]. Thus, uncertainty remains about how IBS is diagnosed in primary care and specialist practice. Boyce et al suggested that the Rome II criteria might be unnecessarily restrictive for use in practice but are suited for research [69]; the Manning symptoms accompanied by chronic abdominal pain without alarm features might be more suitable for practice. Gastroenterologists should educate family practitioners on the typical symptoms and diagnosis of IBS, but strict adherence to a particular set of criteria is not supported by evidence.
from the article the abstract of which is here:http://www.ncbi.nlm.nih.gov/entrez/query.f...2928&query_hl=9
 

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I have no argument with you - I agree - the criteria are ever changing - people should be responsible for their health and leave NO stone unturned if you cannot get to the bottom of your symptoms. Ask your doctor everything you can - ask what could possibly cause the symptoms you have, and have the appropriate testing done. NO argument there.I have been to the Mayo Clinic for my IBS dx, and also had 4 other gastros or internists - have had all the tests you mention done - - all negative - so I am a diagnosis of exclusion. The very reason I went to so many docs, was that my IBS was so severe, I couldn't believe it WASN'T something other than IBS! I did indeed believe I was either allergic or intolerant to something or had a physiological intestinal abnormality, diabetes or liver disease, as I have familial history of those. All normal with lots of different tests done over the course of many years. Very frustrating and I endured much suffering and pain, both physical and emotionally because of the lack of successful treatment I received until I found this BB. Bonnie, just like myself, you are letting persons know on this BB what your situation was, so that others can be tested properly like you were, if they are not seeing resolution to their symptoms. Since my IBS falls into the more familiar/typical of the severe IBS symptoms, and since I tried everything else, and was responsive to the last thing I tried, I tell my story to help others - just as you do. I speak on the phone with many IBS patients from across the country - I always encourage them to make sure there is no other problem going on - and many have been tested just as you say, for these conditions.I don't consider myself to be an IBS expert, and even though some here may post more research than others, none here are really experts in the sense that they are gastroenterologists or even physicians - but I am learning along with everyone else. Though I have worked in the health field, I do not agree with everyone, professional or not, I have my own opinions based on what I have read and the research I have done. Bowel symptoms such as those shown in IBS can have different etiologies. You may be correct in saying that some docs may not know of either Rome I or II or the Manning criteria. Many GPs give a dx of IBS and the patient may not even get to a gastro unless the symptoms are unbearable or get worse. Many patients may suffer with various intolerances or malabsobtions and not even have a clue - so I whole-heartedly agree with you - in other words - I don't always share the opinons of others who have posted here, and my posts/comments should not be taken as if I am in association or agreement with anyone else. I speak only for myself, and I am not in liase with any others here in particular,one way or the other, and have communicated this on occasion. If a person finds relief,no matter what it is, then fair play to them. But there are certainly precautions that need to be taken in every arena of medical health, especially in terms of treatments.The fact is that many people are coming to this bb for information - and everyone has their perspective. Some info may be the perspective of the majority here, some may not - but it is given all the same in an effort to help those who suffer - just as you are doing - and I commend you for it.Your perspective is absolutely valid and I am sure it is helping many to seek out a complete answer to their IBS - however - the majority of IBS patients - do not fall into the subsets listed above - again - do we "call" these subsets IBS? Some research papers I have read may do so, but it is a label within a label in my opinion, like yourself, they have IBS symptoms, but the condition is dx'd as fructose malabsorbtion, lactose intolerance, etc. It's like saying, "what is causing your IBS?" - it is another condition that has symptoms like IBS, but not IBS. Fructose malabsorbtion isn't IBS - it causes IBS - type symptoms. So the crux of it is - no matter what the official "criteria" of being dx'd with IBS is - first make sure as a patient, if you are not getting relief and you suspect other things are going on, ask your doc, and see if you can be tested for these other things before accepting the final IBS diagnosis - with this - I am in absolute agreement.If, like the majority of those of us with an IBS diagnosis, you do not fall into the intolerance categories, then persue the IBS treatment protocols that are right for you, which, as you can see on the BB, are many!Thanks, Bonnie, for your insightful discussion!
 

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Discussion Starter · #11 ·
Hi Marilyn, I have no quarrel with what you do on the board. I have a quarrel with eric because everytime I post a test which needs to be done he comes and says it is not necessary. I agree with you completely that FI is not IBS but as my signature says over 70% of patients with unexplained GI problems had FI. The fact is most docs don't do the FI test because they don't have the equipment. Perhaps because you went to Mayo they tested you there. But most here have not had the FI, celiac and SIBO tes done. And yet have been diagnosed with IBS.So that is the only point I am trying to make which is do all these tests before you settle for a diagnosis of IBS. Second point I want to make is again related with FI not being IBS. Again you need hypersentivity with FI for it to create IBS symptoms of pain/discomfort. So while not all those with FI develop IBS the fact is that removing fructose can elimnate the symptoms of IBS in fructose malabsorbers. So while FI may not be IBS it is an important trigger and in those with it IBS can be managed by eliminating fructose.Thirdly I want to say that saying FI, Celiac, SIBo being real separte illnesses makes them not IBS is kind of against the spirit ofmy first post. The author is suggesting that there are things wrong structurally, even genetically in some subgroups and as more knowledge is acquired we will find various things wrong which will be detectable by tests in the different subgroups and then they won't be IBS any more but several organic diseases. So this is sort of a continuum with SIBO, Celiac, FI, LI, other organic diseases as they discover them and finally there might be only a small subset which is true IBS by your standards. Thanks for a great discussion. I hope people read this thread so they see what the issues are and educate themselves about it.
 

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quote:Many people on this BB do NOT have IBS!!
quote:But most here have not had the FI, celiac and SIBO tes done
But most people here do have IBS.
 

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Yes, Flux, you are right - most - the majority here - DO have IBS - but many come here with IBS symptoms but have other things going on - and some have IBS in addition to other things. The fact that there is an IBS BB demonstrates that people are searching for answers. We are all here in our search to feel better and to support each other. Peace.
 

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Discussion Starter · #14 ·
Oh here comes along another expert that I have a problem with, LOL!. flux on the basis of what do you say that most people here have true IBS? Or should we accept your opinion as that of an expert and not have you explain it?
How do you define IBS- a diagnosis of exclusion? Most people have not excluded Celiac, FI and SIBO. We could have a poll in the poll section. Do you mean by Rome II? Did you read that article I posted about docs' knowledge of Rome. These are the docs who are diagnosing people with IBS on the board. Even if we compromise and say that they are not diagnosing by Manning but Rome I(God forbid they even hear of Rome II) only 65% of them have true IBS by Rome II. So the remaining 35% do come to the board unless you are implying that this board does not have a representative sample? On the basis of which statistical measurement are you implying that?
 

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Bonniei, I am pretty tired of you bashing me without a better understanding.IBS represents 1 in some thirty functional bowel disorders.Yes there is also sibo and celiac and many other organic diseases.Dr drossman and 50 other gastroenterologists from all over the world will be coming out with rome lll soon.Dr Drossman is president of the rome group, not the only doctor. It isn't just him but a concensus.The UNC works with mayo and with every other top center in the country. Get there digest newsletter and read it.Its onlinehttp://www.med.unc.edu/medicine/fgidc/coll...2005_digest.pdfYou have complained you don't want to read my long posts, yet when you post the inaccuracies you do about me then I feel I need to respond.FirstAn accurate diagnoses is extremely important. There is a cluster of symptoms and specific issues with an ibs diagnoses. You also have to understand the prevalance of IBS. It is also important there are no "red flag" symptoms.Current Approach to the Diagnosis of Irritable Bowel Syndromehttp://www.aboutibs.org/Publications/diagnosis.htmlGastroenterology Expert ColumnDiagnosing Irritable Bowel Syndrome: What's Too Much, What's Enough?Posted 03/12/2004 http://www.medscape.com/viewarticle/465760From The American Journal of Gastroenterology Splitting Irritable Bowel Syndrome: From Original Rome to Rome II CriteriaPosted 03/05/2004 Fermin Mearin, M.D.; Montse Roset Ph.D.; Xavier Badía, M.D.; Agustin Balboa, M.D.; Eva Baró, Ph.D.; Julio Ponce, M.D.; Manuel Díaz-Rubio, M.D.; Ellen Caldwell, Ph.D.; Mercedes Cucala, M.D.; Arturo Fueyo, M.D.; Nicholas J. Talley, M.D. Abstract and Introductionhttp://www.medscape.com/viewarticle/466785From Alimentary Pharmacology & Therapeutics Irritable Bowel Syndrome - An Evidence-Based Approach to DiagnosisPosted 06/21/2004 http://www.medscape.com/viewarticle/481182Serological Testing for Coeliac Disease in Patients With Symptoms of Irritable Bowel Syndrome: A Cost-Effectiveness AnalysisPosted 06/02/2004 S.M. Mein; U. Ladabaum Summary and Introductionhttp://www.medscape.com/viewarticle/478542The "biopsychosocial model" is EXTREMELY IMPORTANT IN TREATMENT!While reserch figures out the underlying issues in IBS and other functional disorders.Comment From the EditorsFunctional GI Disorders: What’s in a Name?Douglas A. Drossman, Associate Editor "By 1977, the biopsychosocial model proposed a move away from biomedical reductionism and dualism to a multicausal model with integration of mind and body: illness is the product of biologic, psychologic, and social subsystems interacting at multiple levels. This model reconciled the emerging research findings not explained by biomedicine, permitted the heterogeneity of medical illness and the various physiological components and clinical expressions of disease, and also opened the door to the concept of mind-body (eg, brain-gut) disorders."http://www2.gastrojournal.org/scripts/om.d...016508505007043
 

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This is the whole article from your abstract.http://www.medreviews.com/pdfs/articles/RIGD_52_82.pdfYou say I don't mention sibo, which I do and fructose which I do and cliac which I do and have been following for years now.You don't mention dyspepsia, motility disorders, etc.In IBS there are a ton of people worried they have all kinds of things. That why you need a good doctor and an accurate diagnoses, to reduce the worrying. IBS is a common condition based again like I said on a specific cluster of symptoms. Things like, it not waking you at night, rectal sensitivity, certain kinds of pain and discomfort, incomplete evacuation and relief with evacuation are not part of the diagnoses, but help the doctor with the diagnoses.I am not here to diagnoses anyone or even scare them, but to point out the specific cluster of symptoms and why it is majorally important to get an accurate diagnoses and find a good doctor and start treatments for IBS if that is what a person has and I am more then aware of other comorbid conditions along with IBS, fibor cfis and others, as well as some people have more then one thing going on.The board seems to spend more time on saying IBS is this or that and less on what it really is and where they are at and what they have already learned about it.GI Disorders in Adults http://www.iffgd.org/GIDisorders/GIAdults.html
 

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It would seem to me, then, that there is an agreement overall in the basic tenants of what both of you are saying - from one of the above links:=======================================http://www.aboutibs.org/Publications/diagnosis.htmlDiagnosing Irritable Bowel Syndrome:Miscellaneous Tests - Other tests may be done depending on specific aspects of a patient's illness, especially atypical symptoms or alarm signs. Radiologic examination of the small intestine performed after the patient drinks a barium preparation can exclude disease in that organ. Lactose tolerance testing (usually by a breath test) can identify deficiency of lactase, the intestinal enzyme necessary for digestion of the milk sugar, lactose. Anorectal manometry (measurement of the neuromuscular function of the anus) is used in certain patients with predominant constipation or fecal incontinence, and colon transit (content movement) studies are sometimes done. However, many patients do not require these or other miscellaneous tests.======================================The take-away message here, then, would be to be aware of the other conditions that may cause IBS type symptoms, and if your symptoms warrant further testing, then ask your doctor about it. Most patients, as it mentions, do not need to have the extra testing done, but by being aware of these options, the patient and the physician can be better suited to find further answers if warranted.Bonnie, as far as I can see here, Eric is not refuting your message, he is in agreement that there are other conditions that certainly exist and may warrant further testing. We all come from a place within our own experience - you are coming from your own experiences in an effort to help others be aware of all aspects - and so is Eric.In respect to all reading this, just agree to disagree in your approaches, but overall, you basically convey the same message:IBS is a complex disorder.You may have something else going on besides IBS, OR in addition to it.The researchers are still learning more about it in both how to diagnose, treat it and the other factors/causes involved.Readers need to be pro-active in their research and with their doctors in obtaining the best care for them.On a side note, I have a copy of Dr. Drossman's article, Functional GI Disorders: What's in a Name? He includes a table of about 20 countrieswhere he gives the Functional GI Disorder Term, Translation Term, Meaning to the MD, Meaning to the Patient - and discusses if the term "functional" is appropriate. There seems to be a paradigm shift in thinking, as more and more information about IBS patients is assessed - but in looking at the chart in other countries, many of the patient comments of discouragement are reflected here on this BB. This frustration on both the part of the physician and patient, seems to be global. For the most part, patients and physicians are all working together to get answers - if your physician isn't working to solve your IBS, then move on to another who does care and is pro-active in helping you. Many GIs are just too swamped with other disorders to always be aware of the latest findings, that is why the UNC and IFFGD, Mayo, UCLA, and others are all working to advance research for treatment and diagnosis.So what really IS IBS? For now, it is labeled as a functional disorder - I think most people on this BB want to know what they can do to help their pain, their symptoms, and just get well and feel better - it just comes down to that in the end.Again - Peace.
 

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Discussion Starter · #19 ·
eric is all just talk. When I say he doiesn't talk about these other diseases then he naturally defends himself. But in a recent thread where were talking about how it is necessary to do these tests his first inclination was to throw in a publication which was about how far to go in the work up(http://www.romecriteria.org/reading1.html) and it doesn't mention fructose intolerance at all, it disparages the breath test for SIBO and there is a big debate there whether to have the Celiac test done or not. It concluded that maybe if patients have D then to do the test, even though people with Celiac can have constipation as a symptom. I wish I had the time to search through old threads to show what he used to do when I used to talk of fructose intolerance but the thrust of his articles was that there was no need to do the FI test for IBS'ers. Another thing he does is post the cost effectiveness of Celiac, here is the exact quote
quote:"These results, while intriguing, do not of course justify routine testing for celiac disease in patients with IBS. To address this issue, several cost-effectiveness analyses were presented during this year's DDW meeting. Spiegel and colleagues[4] compared 2 competing strategies: starting empirical treatment for IBS vs first performing serologic testing for celiac disease. Using a third-party-payer perspective, and assuming that the prevalence of celiac disease is 3.4%, testing for celiac disease rather than beginning empiric therapy cost an incremental $11,000 for just 1 symptomatic improvement. When the prevalence dropped below 1%, the threshold of testing for celiac disease exceeded $50,000 (indicating that it is not cost-effective). Testing for celiac disease was definitely acceptable when the prevalence of the disease exceeded 8%. Mein and Ladabaum[5] also conducted a cost-effectiveness analysis for celiac disease testing that reached slightly different conclusions, although some of their assumptions also differed. The concept of cost-effectiveness analysis in these cases is really asking how much one is willing to pay to achieve symptomatic improvement. Both of these cost-effectiveness analyses indicate that routine testing for celiac disease is not inexpensive. Additional data are required to determine the prevalence of misdiagnosis of celiac disease and IBS across different settings. Although this all remains thought-provoking, it seems reasonable not to routinely test for sprue unless one works in a high prevalence area or clinically suspects the diagnosis on other grounds." http://www.medscape.com/viewarticle/480231?src=search
He seems to be arguing against Celiac tests all the time even though 10% of IBS'ers have Celiac according to a recent study.In any case marilyn, I don't want to discuss with you what eric does or does not do, because I don't have the time to pull up some of the old threads as I am getting ready to send a mathematical paper off for publication, today. I hope I make this deadline.
 

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quote:Dr Drossman is president of the rome group
I never have been interested by him because he seems to focus on the "mental thing".But beeing the presisent of Rome,I abdict.
 
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