# leap only for patients with D???



## cristina21 (Apr 24, 2002)

i dont have D or C my main problem is gas







.....i went to the leap weab page and it said it releive it but i keep reading here that it helps most ppl with ibs D......i wanna know since that test is a lil bit expensive.....thanks


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## ohnometo (Sep 20, 2001)

If your only symptom is gas you may just want to take a look at the foods you are eating that may play a part in it...or there may be something else you want to check into. You can do a search here on the bulliten board and see how others have found relief with gas....and maybe just log down what you are eating and see if there is a pattern...I dont think LEAP helps with just Gas but maybe I am wrong I would try some other avenues first


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## Mike NoLomotil (Jun 6, 2000)

CRISTINA....Your symptom set would not suggest that this protocol would be appropriate for you. LEAP helps with gas but only in the context of gas as one symptom in a specific array of multiple sympotms which suggest digestive dysfuntion from food or chemical sensitivity. This you do not describe.Rather, do you have a book about foods which includes descriptions of what foods are gassy, what lactose or fructose intolerance is like and what might help?This would be the place to start first and see if you can get relief and involves about $15 only.Brostoffs book has this info...in addition to the food sensitivity stuff."FOOD ALLERGIES AND FOOD INTOLERANCE: THE COMPLETE GUIDE TO THEIR IDENTIFICTION AND TREATMENT", Professor Jonathan Brostoff , M.D.. Allergy, Immunology and Environmental Medicine, Kings' College, Londonhttp://www.amazon.com/exec/obidos/ASIN/089...r=2-1/102-64875 08-3420903[/URL]You could try that, and also see clearly what applies to you and what does not. MNL


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## JackieGian (Mar 23, 2002)

Initially, I wasn't going to post anything about this, but since the subject came up --- I filled out the questionnaire on the LEAP website for my son who has IBS. He has gas and pain. I received a phone call stating that there was a 50-50 chance that LEAP could help. However, I received an e-mail stating that he PROBABLY DOES HAVE a food allergy. The ONLY symptoms I checked on the questionnaire was gas and pain. Upon further reading on this BB, it became clear to me that LEAP helps people with D. I must say, I would have had much more respect for the LEAP program had I been told clearly that they probably COULDN'T help.I understand that LEAP has helped many people on this BB, but they should really be careful about who they claim to be able to help, or the whole program will lose credibility!


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## ohnometo (Sep 20, 2001)

Hi JackieSorry to hear about your son...You might want to email Mike and see what happened..LEAP tests for Food Intolerance and not Food Allergy..I hope your Son finds some relief soon..LEAP helps alot of people with many other symptoms other then IBS. I Know there is alot of NFL football players that use the program that dont have IBS...But if I was you I would talk to Mike N. Just a suggestion...and I think it is so wonderful of all the work you are doing with your son in helping him getting better...With all your hard work I am sure you will get relief soon....maybe someone got their wires crossed somewhere..


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## cristina21 (Apr 24, 2002)

well i have some of the other symptoms on the complimentary food sesitivity test (ill name a few) im tired most of the time. i cant relaz or sit still , i have insomnia usually go to bed around 4 am and wake up at 12 TIRED! i am really irritable all day i have lack of concentration ,,,i am REALLY FORGETFULNESS i have a lil bit of depression sometimes . i allways have food craving....and i have a few others but i only named gas bfore cuz that s the one that botters me the most and that s the one i think is causing all the others cuz ibs started when i was 17 im 22 now and bfore that i didnt have any of those symptoms..... for example when i get depressed its bcuz of the thought that i might never b cured or at least control this ibs a lil bit ... that depression makes me not wanna wake up during the day so that s why i wake up really late and then at night im not sleepy cuz i sleept most of the day but although i sleep till 12 im still tired and angry at people and really irritable (u can ask my poor mom im allways fighting with her or screaming bcuz of small things) anyways its a fact that ive been having this gas for 5 years that i have the other symptoms....(well at least that s what i think) or maybe they all conspired at me to show up at the same time....which i dont think ....... thanks for reading this i woke up like an hour ago and i feel really crappy today (i also have my period today which makes my symptoms WORSE!!!!!!!!!)


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## Julia37 (May 9, 2001)

Christina, have you tried taking dairy products out of your diet? They're the most common cause of gas because of lactose intolerance. Jackie, avoiding dairy might help your son also. Try avoiding dairy for 2 weeks and see what happens.Christina, it sounds like you have other symptoms of food intolerance, especially the cravings and fatigue. I'm sure when Mike comes back he will clarify this for you.


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## cristina21 (Apr 24, 2002)

thanks julia for your advice so dairy products is what , besides milk and cheese??..........well and i bet theres a bunch of food im gonna have to avoid for example pizza? do i have to avoid pizza? cuz it has cheese on it......so im guesssing yes....... what else? that s what comes to my mind right now...... and can a food intolerance apear all of a sudden ? cuz 5 years ago when my symptoms started......i just woke up one day feeling bad...all of a sudden with no previous symptoms......


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## Mike NoLomotil (Jun 6, 2000)

Jackie: __________________________________________"...it became clear to me that LEAP helps people with D. I must say, I would have had much more respect for the LEAP program had I been told clearly that they probably COULDN'T help." ___________________________________________You raise several key points with your post that can help people better understand not only how their symptoms are assessed for probable cause, but what the LEAP protocols are and are not.LEAP is what is called a "Disease Managment" or "Symptom Reduction" Program...depends which term a particualr doctor prefers. It was developed by doctors and dieticians on live IBS patients (and patients with other symptoms as well) over a 3 year period nearly 2,000 were involved in working out the system, each element). It is based in part on the use of a tool of a patented, proprietary testing method (developed by immunologists) which allows the assay of a wide array of foods and chemicals, instead of trying to pick through by serial oral challenges, to which the immunocytes (beginning in the smll intestine and then in the blood stream when food components are absorbed) can react inappropriately. It has been discovered by using direct-jejunal isolation studies (and other indeirect methods) that a population of patients who are diagnosed as having IBS (usually the d-predominant or cyclic type so the population is quite large) suffer from this hypersensitivity. The chemicals released "at the wrong time" by immunocytes provoke pain, spasm, sensitivity to pressure within the lumen, disruption of normal digeation, increased mucous production, and even evacuatory episodes.When you develop a Disease Managment program you must develop methods of attempting to separate the populations of people who have higher probability of being helped from those with the lower probability of being helped by the methods used in that DM program.Then you must have protocols which produce positive outcomes...as measured by whatever indicates improvement in the disease being managed. In this case...symptom reduction is the goal up to and including remission.There are also elements where you have to have tools for assessing compliance, and tools for tracking progress, and procedures for the implementing doctor or therapist to follow to ensure standardization, and patient specific therapies.This is what differentiates "Disease Managment Programs" from "treatments". Programs are coordinated and multi-modality regimens for a selected population with a targeted probability of success and whose outcomes can be monitored.The Symptoms Surveys used, as you can see when you look at it, are designed to survey more than just GI symptoms. Why? Because if your GI symptoms are precipitated by immunocyte hypersensitivity of any kind to a food or a chemical in foods (non-allergic...non IgE...standard allergy tests are for that..and cannot detect these reactions this testing does and vice versa...they are complementary like doing a blood count and a urinalysis; true food alergy is much less frequent than non-allergic hypersensitivity and much harder to accuratley assess)..anyway if this is occurring it is well known that the patient also suffers some degree of SYSTEMIC symptomology as well. This is because there are as many as (8) different possible mechanisms of hypsersensitivity response which may occur, and result in Any Combination of up to 100 different mediators being released not only into the lumen and wall of the small intestine (it starts where digestion is taking place).For example when certain lymphocytes are involved (they circulate in and out of the bloodstram and lymphatics and through the bowel wall) of course if they react they reenter the blood stream and dump chemicals there too. Or if there is a problem with other intra-vascular reactions in response to what gets through the bowel wall when the permeability is altered by what happens IN the bowel wall, mediators released in the blood stream travel everywhere and can effect many diferent organ systems inlcuding the CNS.So the fisrt part, the very first part, of assessing the probability that food or chemical hypersentivity is a possible culprit is to assay the known symptomologies in total. The higher the severity and/or frequency of sysmptoms and the wider the array, the higher the probabilities that this is part of or even all of the problem with the patients symptoms.One also has to ask a few questions about history and medications as well, as these will ahve bearing on the symptoms as well....what may appear to gbe diet related could, for example be thyroid related. or the patient could have an actual true IgE allergy which can often be assessed by a series of simple questions as to probability.So when you get a person with an assigned diagnosi, like your son, of IBS BUT the only symptoms are 'Gas and Pain'...this rasies questions as to the veracity of either the reported symptoms or the diagnosis since no change in bowel habits was reported and this is, according to the ubiquitous ROME II CRITERIA part and parcel to an IBS diagnosis. So this will make any LEAP dietician or the Patient Care Cordinator (who has worked with the immunologists and allergists for years and teaches the subject to doctors) more likely to be "ambivalent" in their assessment of probabilities.I the case of CRISTINA the ONLY SYMPTOM she reported was gas. This redcues the probability of some form of food or chemical hypersensitivity to a ver low level. There are other mechncisms much mroe LIKELY. You CANNOT RULE OUT the cindition with a symptom survey...you are trying to do exactly what you suggest we are NOT doing: maintaining credibility. Unlike some LABS who "sell testing", we do not "sell testing", that is...."take this test to rule out [ insert condition tested for]...so that they are testing people who probably do NOT have the condition which they could tell if they used s creening system. We do not sell tests, we either (in Homecare) advise the person (based on the symptom survey AND however much of the history the person volunteers) of the probablities...of the probbailitieis of whether this will help in the end (the Program) if the person enters it..either in Homecare or under the care of a LEAP doctor provider.So the wider the symptom range the higher the probability and vice versa.So it is not that LEAP is only for patients with "D" or cyclic IBS...it happens that this is the [primary smoking gun], one of the most obviosu signs of immunocyte activation absent detetcted organic disease like infection or IBD.And the opposite end of the specturm is ONE SYMTOM and NO history...like "gas". There it is much more likely the person should seek help elsewhere than invest in this program. We could very well be within righta, legality and usual and customary procedure to let the person just be tested as s screen to rule-out hypersensitivity. I would get a lot more testing done. But that is not what we are about.So, I was not present when you discussed your son, so I do not have the benefit of ading the HISTORY (whatver was reported) in the context of "GAS AND PAIN AND AN IBS DIAGNOSIS" to the probability assessment either the RD of the Patient Coordinator tried to advise you of.But they did give you a fair assessment that from what you reported they cannot "rule out" that your son does not have any hypersensitivity as the PAIN 9depending upon nature, duration, frequency, context of mediaaton and diet) is another "red flag". The pain sensitivity is heightened in some patiets with gut sloaclized reactions of w lower order, without evacuation following.the classic case of this is the c-predominant ISB victim with a cormorbid food or chemical sensiitivity. The fact they do NOT suffer evacuatory episodes reduces the PROBABILITY that this mechanism is contributing much to their symptoms, so the degree of symptom eduction seen in c-types is less than in d-types...BUT if the patients is "immotile" an has a lot of pain and gas as well, the probahiltiies just increasd. So this particular case would be MORE likely than another without the pain and gas reported as frequently or severely to experience some benefit...and that would be (if test positive) pain reduction (meditors released in the gut wall do many different things and which symptoms you get depends which type of cells and thus mediator array are involved...platelets for example are loaded with 5HT...mast cells are loaded with histamine...they both have other chemicals but each has s different predominance thus a different predominant set of side effects).So, in the view of the person seeing an IBS diagnosis guiven by a doc,, gas, and a report of pain, the degree and frequency were sufficient to subjectivley suggest that the probability of this being a componene tof the probelm is increased.But I do not hink anybody tried to slam-dunk you into putting your son into the program. They did their job as the doctors trained them to....assess probabilities from the sysmptoms and history given, and advise of them so the person can make an informed decision.IF Cristina, for example, had told me that she also sufferd spisodes of pain which were frequent and moderate to frequent and severe, my answer would have been more detailed and I would have asked more questions to ascertain whether she could be heped or not, and what the relative probabilities are.So in general it is indeed accuarte to say, as we always do, that the patient with a diarheic componenent is more liekly to benefit, and to experience greater benefit, is in accordance with following the rules by which one adminsters DM or SR "Programs", so the person can think, evaluate, and make an informed decision.If you had reported exactly what Cristina reported, you would not have been given the best guess that it is "50-50" with that symptom. It is not enough to rule IN or OUT. So you have to say that. One person might say it one way, another might say it another, but if our people did not push you to put your son in the program based on hthe info given, then they did their jobs correctly. I will guaranee you you will not alwys have that degree of objectivity with all other organizations or people who have a single modality to offer...somehow their product or service semms often to me morphable into a "one size fits all". This is merely the old rule "When your only tool is a hammer everthing is a nail".I wish there were a more black-or white way of ruling in or ruliong out by self-reported symptoms...then we could just skip any testing and get right down to the dietary therapy specific to the patients. But we cannot so we have to do that "patient selection" exercise.The Disease management Association of America guidleines for constructing DM Programs are among the guidlines the LEAP doctors and dieticians try very hard to abide by, with a "Syndrome" which does not follow a fixed set of rules, as you can see. It's easier with diabetes or wound care and the like DM prograsm as at least those pathologies are more predictable than IBS.If you have any more questions I will be glad to answer them, here or privately by email. Just bear with me as I only have now maybe one hour a day each morning to come and visit so it may take a day or two to get the reply time in...and I am a poor editor of typos...time time time is so short.Eat well. Think well. be well.MNL


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## Mike NoLomotil (Jun 6, 2000)

PS....I also should have read Cristinas next post above...as you can see she has other systemic symptoms niot just gas, and this would toally alter what I would have said.The famous William Osler, MD. said it best "If you talk to the patient long enough, she will tell you exactly what is worng with here".It is unfortunate that I do not have enough time or fast enough fingers to talk all the way through...but this would have come ojut in a oral interchange over the phone or face to face, and the assessment would be different. I recommend Brostoffs book more explicitly now, at least that much is for certain.







Crsitina....Get Brostoffs book and read it....it will help you assess more clearly what you are going through and allow the advice of those who have learned to manage this prpblem to make a lot more sense. There are specific "ways and means" of approaching those probelems systematically, but Prof. b takes, what, 470 pages on the whole subject which i couldnot possbily hope to do better with here.MNLMNL


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## Julia37 (May 9, 2001)

> quote:no change in bowel habits was reported and this is, according to the ubiquitous ROME II CRITERIA part and parcel to an IBS diagnosis


Um, excuse me lords of the ROME II CRITERIA...I had IBS symptoms all my life and didn't know any different until I changed my diet and did hypno and (further) stress reduction - so if I had been asked if I had change in bowel habits I would have said no, and this would have ruled out an IBS diagnosis, right?







Christina, dairy includes milk, cheese, yogurt, ice cream, sour cream and anything containing those things. Also many processed foods, especially those frozen ready-made meals, contain dairy products. You'll have to check the ingredient label on those. Watch for things like "whey", "casein"(milk protein), powdered milk or sour cream. It's only for 2 weeks, you can do it! If you start feeling better you won't want dairy anymore, anyway.


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## Mike NoLomotil (Jun 6, 2000)

LOLJUkia I trust you noted the placement of tingue-in-cheek in my reference to the R2=D too criterion...but if one has to speak of the mainstream in symptom-based diagnosis this is ort of all they have to go by tht at least is somewhat standardized.The Rome Criterion, so called as they eveolved from the discussions of doctors who like to go to Rome as long as the sponsoring drug companies certainly are going to pay for it, do have a lot of merit in the sense it gives one some gudileines how to recognize the probablities of the presence of the Syndrome.I think the primary issue that many others take, including the doctors I work with and many others approaching it a bit differently, is the concept of taking an empirical approach to diagnosis and treatment. It appears to some that this often encourages physicians to stop seeking a causal basis for the symptoms way too soon, and there are people with a reversaible or avoidable mechanisms of symptom egneration that further investigation might have revealed. So there is a population of people, large it is suspected, walking around beleiveing they have s "syndrome" or "functional disorder" only because "unnecessary testing" was not done to root out that cause.This remains a source of debate as well it should. if not the lines of investigation in the condition would be limited to only one...and progress would be slowed by too narrow a focus. If saying so makes me a heretic, then I bear the name proudly.







Eat well. Think well. be well.MNL


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## Julia37 (May 9, 2001)

Mike,


> quote:It appears to some that this often encourages physicians to stop seeking a causal basis for the symptoms way too soon, and there are people with a reversaible or avoidable mechanisms of symptom egneration that further investigation might have revealed. So there is a population of people, large it is suspected, walking around beleiveing they have s "syndrome" or "functional disorder" only because "unnecessary testing" was not done to root out that cause.


If my experience is an accurate indication there are *thousands* of undiagnosed people in this country. My approach to things is keep testing until I find the source of the problem, and it works! Health care is one field where this should *always* be done, IMNSHO. I have strong feelings on this since I suffered for 29 years from undiagnosed soy allergy...







BTW, I found and fixed a bug in my program today while the tech support people were still doing research!


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## ohnometo (Sep 20, 2001)

I am so glad I didnt give up on finding what in the world was triggering my IBS...I was on my last straw when I started working with Leap...I had no where else to turn for relief...Hi Julia


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## Mike NoLomotil (Jun 6, 2000)

Julia....All I can say is "ditto".Oh, and .... _____________________________________"I found and fixed a bug in my program today while the tech support people were still doing research! " ____________________________________This is so funny when it does happen....I had a similar situation another time many years ago. My MIS ran on a UNIX platform so IMAGINE the techno-babble of "grepping" that could produce!!! While my office was overflowing with the technical psychobabble being thrown haphazardly around the room by the tekkies comparing ego-to-ego who could one-up the other on the diagnostics of my possible problem, I wiggled the serial port on my terminal and corrected a short.It took 20 minutes before they even noticed that while they continued their summit conference I had already gone abck to using the device connected to the port in question and was generating output documents.You know what? They just moved out to the other room and kept talking, now in a "what if it had not been the port-cable connection" context.







yet once they were reminded about what they were actually being paid for (work not menatal mastur-you-know-what) they did return to their cubicles.







MNL


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## Julia37 (May 9, 2001)

Back at you Donna!







Mike ROFLMAO! That's one of the hazards of a scientific education!


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