# Feeling weird about ALL LEAP posts moving here



## WashoeLisa (Sep 12, 2000)

I know Jeff has the best interests of the board at heart, but I feel like the Discussion place is where everyone goes first for any and all info on IBS.Moving ALL of the LEAP threads over here makes me feel like what they used to call "the red-headed step child".Hmmm-maybe I am just being too sensitive, but that's my gut feeling. (No pun intended)







Lisa from Nevada


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## Julia37 (May 9, 2001)

I think Jeff wants to manage the flow on the discussion board, but I'm concerned that people who haven't heard of food sensitivity yet won't find out about it if everything is moved here, and if they are undiagnosed sufferers they will continue to suffer.I wouldn't have learned about it if it hadn't been on the main board, and I might be dead (definitely wishing I was) by now.


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## WashoeLisa (Sep 12, 2000)

Hi Julia,Yeah, exactly.That's my fear. I put up with so much (in terms of abuse when I first came here) just in the hopes of some people seeing my story and getting better- and if there is no discussion of it on the big board, then what...Thanks, Julia! I appreciate you!







Lisa from Nevada


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## ohnometo (Sep 20, 2001)

Well, it dont make since to me either..but I will continue to share on the main board what worked for me...I am sure it wasnt just Jeff's idea...for sure...I would have never thought to come here and look for relief ...Why is it so hard for people to accecpt that some people might get alot of relief like I did....I better stop writing anymore before I say something I shouldnt..Hi Lisa and Julia


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## Mike NoLomotil (Jun 6, 2000)

As long as ALL the Hypnotherapy threads get moved off the main board to the HYPNO-CBT Board then all is fair. If they do not then it is not. I will ask Jeff his intentions today, as I just got back froma trip and this comes as what I would term at best a disappointments after observing years of Hypno Pitch on the main board. As soon as this becomes a major topic of discussion it gets sent to purgatory?MNL


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## ohnometo (Sep 20, 2001)

Jeff,First thank you so much for the time and engery you put in the BB...It is hear where I learned what would work in my life...So I guess I just dont get it or something...Why the LEAP thread was moved here ? It has alot more to do about Food Intolerance then just diet and nutrition...I am not here promoting LEAP I am here just sharing what has worked for me...If only one other person would get relief from this horrible illness that would make me so happy....I know what was behind all of this to get it moved here...So please can we move all the subjects on the main board to the correct catagorie when they arise...Just like you did LEAPS


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## ohnometo (Sep 20, 2001)

Jeff,I emailed you along time ago and I know you are busy..Just one question ...Do you think sometime that it could be possible to have a thread started on maybe Food Intolerane or Food Sensitivity ? The topic here dont seem to sound like it fits under diet/nutrition...It plays a part in it...I think it is very important that others know they may get just a little bit of hope with a whole lot of help...Would you please consider it ??Thanks very much


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## WashoeLisa (Sep 12, 2000)

Hi Mike and Donna,Yep- you both read my thoughts exactly.Mike,Glad you are safely home! Hope you got a nice birthday surprise on your return














!!Donna,HI!!







Hugs,Lisa from Nevada


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## ElisehasIBS (Feb 3, 2002)

I am also concerned







about the thread being moved. I did not look at this thread for a long time when I started this BB. I like ohnometo idea. People might never look here thinking it is just a place to swap recipes.


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## Mike NoLomotil (Jun 6, 2000)

As a healthcare provider, and a representative of same...a group of healthcare providers inlcuding doctors dieticians, and clinical laboratory personel, I do not personally (nor collectively does the organization) have the time or interest in becoming more involved in any self-serving politics with purveyors of single-mode therapies of any kind, pharmaceutical, behavioral or otherwise. Doing so contributes nothing to any personal effort to make the suffering public aware that much of the information they are given concerning symptom managment via diet in IBS is flawed, and that the optimal approach to IBS should be an integrated Disease Management Approach.Those that gain personal gratification in such matters atre free to do so as they please, but I have precisous little time to waste on such things at this time, nor do I consider it activity which is in the best interests of the sick...which is the whole point of being an actual healthcare provider.If a consequence of local politics is that such an effort as this, when it opens discussions in a forum which is highly active, which involve actually beneficiaries interracting and discussing their program and the outcomes, is that said discussion is shunted to an area which on the surface seems "appropriate" but which in fact has little traffic thus removing it from the "offended eye" of parties unnamed, then so be it.One who wants to help the sick can still do so when it is deemed appropriate. Simply direct people to these locations if they are interested in reading discussions on disease managment in IBS with this protocol by simply posting the linkes whenever a disussion warrants it, and those that are interested will follow the links..."LEAP and BLOOD TESTS" http://www.ibsgroup.org/ubb/ultimatebb.php...ic;f=4;t=000285 "WHAT IS LEAP?" http://www.ibsgroup.org/ubb/ultimatebb.php...ic;f=4;t=000287 "LEAP [Patient] UPDATES" http://www.ibsgroup.org/ubb/ultimatebb.php...ic;f=4;t=000286 "...THE LEAP THREADS BEING MOVED..." http://www.ibsgroup.org/ubb/ultimatebb.php...ic;f=4;t=000292 If you feel any discussion warrants sharing these expriences simply post the threads and suggest they be read and leave it at that. If a person is interested in the topic they can just click the links and here they are...if not then those who are offended by actual outcome-oriented Disease Management approaches to IBS need not follow the links thus avoid the discomfort of seeing the discussion of the realities of said protocols.Eat well. Think Well. Be Well.MNL


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## WashoeLisa (Sep 12, 2000)

*Big Sigh*This really makes me very sad...One of the reasons I came back after my self-imposed vacation from here is that it seemed to be a nicer BB and there were lots of people interested in something I had personal experience with- LEAP.What a sorry state of affairs...Lisa from NevadaP.S.If you ever want to find me- I run the Digestive Conditions community at www.toyourdoordirectory.com(Used to be with AmericasDoctor and we were sold over there) But its run by ME - so anyone is always invited there too.


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## ohnometo (Sep 20, 2001)

Thanks Jeff for answering the questions here on the board and the ones that has been emailed to you..Recently and months ago by me with no responce... I can try to understand about moving the post to food..but not to respond to anyone questions...very disappointed in this board and yes I can leave if I am not happy..but I am not only because I want to share with others...you know as I look back over the last several months and see how people has treated others it is very sad....All the #### about fraud being posted day after day every time a subject come up about leap or food intolerance...Everytime I would say something or even others there was a member just sitting there morning after morning to post something when someone replyed to LEAP...down right sad that other is like like...I really know what this is all about and so do others...It started with one closed mind that couldnt accept new methods of treatment to help ease the pain of IBS... Then one member couldnt take it and decided to take a break only to get someone else to post the sad things about leap.....Yes I am very upset not to cause trouble ...but when it comes to others not getting respect it is very saad.....WE ARE ALL CHILDREN OF GOD and we put our pants on the same way ..and should treat others like we want to be treated.and we are here to help each other not to play childish games and whine about every little thing...This shouldnt be a childish game that is being played...This is the helping others and reaching out sharing our experience strenght and hope that there is relief....The people here can take what they might like to try to get some relief....Just my opinion ...This ended up like this because of Hypnotherapy issue..and if poeple are honest they know....IT Dont matter if its Hypnpotherapy or LEAP both works ....We shouldnt think about ourself ...We need to put others first...................Thank God I was able to find relief before I looked at all the negative stuff here on the board....I am very disappointed on why this happened and expecailly disappointed on why nothing was said about all the other post...I guess there is still people out there in the worlk like that and thank God I was raised with different values


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## ElisehasIBS (Feb 3, 2002)

well said onnometo


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## Jeffrey Roberts (Apr 15, 1987)

I'll repeat what I wrote in the main forum,Food sensitivies are no doubt a real issue, however from my research at Digestive Disease Week, at this time, it is my opinion that it has no relationship to IBS.Thank you for your comments Ohnometo and everyone else.


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## Mike NoLomotil (Jun 6, 2000)

"From the presentations" at this conference one can conclude that an entire body of evidence spanning 25-30 years be immediately disregarded?You do raise interesting questions, but if one is to disregard prior evidence and clinical outcomes one must be experincing a revolution in the disgnostics of "IBS".To state flatly that this phenomenon has nothing to do with IBS, means that one must ignore a lot of information which is plain to the naked eye. For example, that when d-type IBS patients are placed on an elimination diet and achieve symptom remission rates of 60%-90%, one must now state that this is an “artifcat”? Or one must consider it artifact when the same patients are returned to their prior diet the symptoms of IBS reappear, but are then suppressed in from 60% to 97% by the use of immunomodulation such as sodium chromoglycate, (response depending upon dose administered)? What is this then to be indicative of ? No immunocyte provocation by specific dietary components? The evidence even sufficient to compel the Merck Manual of diagnosis to suggest that there is a population of IBS patients whose symptoms are provoked by food intolerance is a misinterpretation of data? Puzzling.We had better not only "distance" any Disease Management Programs which incoroprate treatment of food sensitivity, but all them IBS diet books and protocols, and immunomodulating substances which block food provoked immunocyte reactions along with stress provoked reactions, and articles and instructions vis a vis dietary symptom provocation as well, since it must ALL be unrelated to the population of IBS sufferers. At this years DDW conference, as in all prior conferences, while all the abstracts are not released yet but the topics are, it is my impression so far that as of yet NO one has integrated the investigative assessments of ENS and CNS activity quantification with the in vivo investigation of endogenous mediators which can be and are provoked to release via dietary provocation to the proximal small bowel, and their role in upregulation of the ENS and CNS in the same patients at the same time selected by the same criteria…nor assessed the plasma or cerebrospinal fluid for proinflammtory mediators whciah are recovered from the small bowel during jejunal isolation in patients with IBS symptoms provoked by direct blind challnge to the isolated jejunum.Until that is done, no one cannot quantify whether the upregulation observable of the brain-gut axis, endocrine function, and immunologic function, is provoked consistently by the same mechanisms, or which precipitating event results in which aberrant observed function in each of the subsystems. It is not possible to form a conclusion, only a postulate since the patient groups studied are separate and the multiple symptom generating mechanisms are not studied at the same time in the same people using all the parameters that can be assessed.Now, what I must assume here is that either an entire body of evidence that IBS symptoms can be and are provoked by specific dietary components in a population of IBS patients best defined as diarrheic predominant is now to be dismissed as irrelevant, or mass-artifact, as well as the clinical outcomes of patients who achieve remission by dietary therapy, OR there must be a change in what IBS is defined as. It must be one or the other.In the first case, since Rome II Criteria IBS patients can be shown to suffer food or chemical induced immunocyte activation in the small bowel by direct jejunal isolation and provocation, and the specific mediators which would then upregulate the local ENSW and smooth muscle as well as the CNS when released systemically can be recovered following provocation by either jejunal washing or biopsy, and said reactivity can also be demonstrated in vitro, AND if food sensitivity then has nothing to do with IBS, the then ROME Symptom based Diagnostic criteria are unable to differentiate whatever one now wishes to define as IBS from what one wished to define as "food sensitivity". Therefore they must be changing the diagnostic criterion and I did not see the related abstracts yet, or even the topics. I will be sure to get the CD ROM and study it carefully and consider whatever was presented, which is sufficient to erase an entire body of evidence.Now, if the Rome criteria are unable to discriminate IBS from food sensitivity induced symptoms, since food sensitivity can be proved and used therapeutically in d-predominant subpopulations, it has limited value as a diagnostic tool if any.Perhaps, as at recent AAAAOA conference, there has been a shift away from symptom based diagnosis and a recognition of the fact that not only mast cell activation by dietary provocation in the gut absent circulating antibodies but T Cell activation and other cell mediated reactions to dietary components produce symptoms that are clinically identified or associated with so called IBS and the phenomenon not only should be acknowledged but addressed therepeutically.It is interesting, the juxtaposition, that at a conference where the focus is from the allergo-immunologic perspective people return with a sudden interest in non IgE mediated food sensitivity and its role in symptom generation, but someone returning from the DDW meeting would express the exact opposite view...attendees at one conference react as if the light bulb blinks on, and after another conference someone says, blinks the light blinks off. Illustrative of the sheer confusion over what is so called IBS and what is it not.Yet there we are...with years of patients diagnosed with IBS (presenting with IBS symptoms and no signs of organic disease) responding to dietary therapy and immunomodulaton with symptomologic relief. One is left to wonder how many people have to sail off into the east then return from the west before everyone recognizes that perhaps the earth is not flat....and as a result that there are multiple ways to get to a given destination...as in 'IBS" there are multiple mechanisms of symptom generation which can and do originate in multiple systems.Conversely, one may wish to even suggest that the food sensitivity observed in IBS is a secondary consequence of an endogenous event in the CNS...in which case it does not mean it does not exist it means that a certain mechanism, non IgE mediated, is primary.But to flatly state that food sensitivity has nothing to do with IBS based upon the evidence and based upon how IBS is currently defined is at best a puzzling view....If that be the case, then, there are HUGE NUMBERS of people not only in the population at large but who are members of this community and others who are NOT IBS sufferers...rather they suffer from lost oral tolerance, food sensitivity or whatever one wished to call it.In either case, the semantics are less important than the selection and then the therapeutic outcomes.Everyone, physicians, dieticians, investigators, moderators ad infinitum is absolutely entitled to belief and to pick and choose that evidenciary material which supports their personal beleiefs.. But objectivity dictates that belief and fact are often 2 different things....or perhaps it is an issue of semantics…one cannot tell.In any case the question is moot since a large population of patients who have been told they have IBS can be shown to suffer from various forms of symptom-provoking reactions (immunologic and non immunologic) to foods and additives which would normally be benign. And that population, properly treated with dietary manipulation, can achieve high rates of symptomatic relief without the need for ongoing pharmacotherapy, or with significant reduction in their dependence on pharmacotherapy. A Disease Management Program (LEAP) which clearly is effective for those patients exists, whether one finds it here or not, or at their doctors office or not yet. As long as patients continue to achieve high rates of positive outcomes I doubt that it will go away regardless of whether those who do not follow it believe or do not believe that the people for whom it works have IBS or not. Whether or not they belong within the so called "IBS" population is moot if they have IBS symptoms, have been told they have IBS, follow the protocol, and get relief. There is nothing within that to debate…especially when the effects persist for months and years.Some things are better left to speak for themselves after a point.Eat well. Think Well. Be well.MNL


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