# My LEAP experience thus far....any thoughts?



## karoe (Sep 22, 1999)

Hello folks and especially MikeNoL.....I wanted to tell you how I've been and to get some input. New ideas can't hurt. I sent off my blood samples on June 14 of this year and started the diet on July 1. My history-- about 25 years of pain predominant IBS leaning toward C with a more recent history of bad cramps and loose stool with urgency every afternoon over the past four years, with the last year being the worst as the pain and soreness in my gut never went away, it seemed. Had already given up dairy and coffee. My reds are phenylethylamine, grape, black pepper, garbanzo bean, coffee. My yellows are cauliflower, wheat







lecithin, tyramine, peach, strawberry, dill, honey, paprika, parsley, american cheese. Began the diet and did not feel "worse" the first week. I kept a food diary but not a sypmton diary (! got one now!) but I remember it was about 2 weeks before I had my first GREAT day----- WOW! My first impression was that I couldn't believe a human being could feel THAT GOOD! Hi energy, peacefulness within, nothing hurt me, had normal stool once in am, it was (and still is) an intense pleasure just to feel GOOD. No pain-- wow! Had a great day like that here and there, but it seemed when I started branching out to week 3 foods there were set backs and I'd feel bad again. Positve points were I ceased to feel a gnawing hunger every two hours if I didn't eat (a long time symptom) and actually, on good days, slept all the way thru the night. I had a great WEEK in August, where I felt like (I guess) a normal person feels all the time...8 days in a row. That week I had gone up to New York to pack up my mom's apartment and move her down south. I was staying in a hotel, eating at diners and chinese buffets...but carefully! When I got back, I decided to eat barley and after about 3 days of that, I felt bad again, retreating to week 1 & 2 foods. I lost 7 lbs because I could not eat bread/pasta. Was eating mainly meat and salmon and vegetables. Feeling progressively worse, I phoned Jan the dietician and she said go right to the rotation diet....I guess that would have been the beginning of October. It was hard to catch the rhythm of making those foods, but I resolved to eat everything on the list and did gain back 4 lbs. (this is a concern for me as I am 5'9" and usually weigh at most, 132) Last week, after much waiting and eating right (no, I don't cheat, no wine, beer, chocolate, pizza has passed my lips since July!) I had a breakthru of 4 great days in a row last week. On the last day I ate some pinto beans and by the next day felt like #### again. Who knows if I can blame the beans? I guess at this point it's still an experiment. I am comfortable enough with the food choices and my weight re-gain that I am now cutting out suspect foods (but remember, all these foods are in my green list anyway!!) like corn and pears...there are other things left to enjoy. If anyone has any strategy advice at this point, please let me know. I had hoped to find a handful of foods that were bothering me and avoid them and be cured. WRONG-O! I have also to remember that I've got IBS with food sensitivities at the same time....so we have to consider where they sypmtoms are coming from. I find it very interesting to monitor my energy level. When I feel REALLY bad, it;s like a big hand squashing me down on the couch and I can't get up...so tired, pains up and down my arms and legs. I think to myself "ah, waves of histamine, just like the fatigue I used to get from ragweed allergy before my shots!" This week, none of that, just gut disturbance and rectal soreness. All of this is hard to figure out, but the GREAT days give me hope.


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## WD40 (Jun 7, 1999)

That's so strange that you mention soreness up and down your arms and legs. Whenever I have had a setback (ALWAYS due to my own lack of will power!) I become incredibly lethargic and achy all up and down my arms, legs, and back. When I'm really sticking to the 3 day rotation I don't feel that lack of energy and very little of the soreness (my back hurts all the time anyway so I guess I shouldn't count that - old injury, ugh!). I guess I never really put the pieces together that a histamine response would cause the achiness. I just figured that if my bowels are in an uproar they want to take the whole body down with no mercy! While LEAP shows what foods cause cellular reactions inside our bodies some foods on the green list will still cause problems and the 3 day rotation will help to weed them out. For instance I still can't eat a lot of tomatoes, garlic, and onions even though all three scored very, very low on the green side, almost no reaction at all. But if I eat them I sure as heck get indigestion and heartburn, usually leading to a mini-bout of loose stools. So do keep track and hopefully the 3 day thing will help you pick out those other foods that for whatever reason your body does not want to accept as friendly. Keep up the good work, it sounds like you're on the right track.


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## Mike NoLomotil (Jun 6, 2000)

KAROE:Sorry to not reply fully but I have not been here for a few days dealing with some NON IBS health problems of my own.I will print out and read your post and then reply the best way possible after I have had time to work it in to my schedule today.Please stand by sorry for the delay do not usually have to do that.MNL


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## Mike NoLomotil (Jun 6, 2000)

KAROSYRUP:Ok the easiest thing ws to just copy your post and then insert my 2 cents where appropriate. Please be patient with my stayke today as I may be more direct and blunt than is usual...just due to time and I don't feel al;l that great myself [non IBS hassles...making me tired and crabby]







_____________________________..."My reds are phenylethylamine, grape, black pepper, garbanzo bean, coffee. My yellows are cauliflower, wheat lecithin, tyramine, peach, strawberry, dill, honey, paprika, parsley, american cheese. Began the diet and did not feel "worse" the first week. I kept a food diary but not a sypmton diary (! got one now!) but I remember it was about 2 weeks before I had my first GREAT day----- WOW! My first impression was that I couldn't believe a human being could feel THAT GOOD! Hi energy, peacefulness within, nothing hurt me, had normal stool once in am, it was (and still is) an intense pleasure just to feel GOOD. No pain-- wow! Had a great day like that here and there, ...but it seemed when I started branching out to week 3 foods there were set backs and I'd feel bad again. " ____________________________[WHAT FOODS WERE REINTRODUCED IN WEEK 3? Keep in mind the purpose of the phased diet is to ISOLATE any pseudoallergic reactions or other forms of local reactions in the gut to foods which will not show up on ANY test yet as they are neither ALLERGY (thus do not involve immunoglobulins that can be detected by RAST or ELSA allergy tests) NOR are they cell-mediated reactions (which are detected by the MRT assay and are more common) than allergy.Some people suffer localized reactions in the bowel which involve mechanisms which are only local and leave to "red flag" in the blood, like an immunoglobuling or an exploding bunch of lymphocytes....so you have to isolate them by oral challenge. This is one of the reasons the LEAP protocol is done the way it is and must be very specifically followed&#8230;.if a person like you is doing well on a given phase, then when they move to the new phase there are only 2 possibilities if they get symptoms&#8230;.either they are eating a hidden reactive substance OR they are suffering from a local reaction like pseudoallergy&#8230;hence the value of knowing the exact dietary reintroduction foods and in limiting the number to evaluate&#8230;it narrows the possibilities] _____________________________"Positve points were I ceased to feel a gnawing hunger every two hours if I didn't eat (a long time symptom) and actually, on good days, slept all the way thru the night. I had a great WEEK in August, where I felt like (I guess) a normal person feels all the time...8 days in a row. That week I had gone up to New York to pack up my mom's apartment and move her down south. I was staying in a hotel, eating at diners and chinese buffets...but carefully! When I got back, I decided to eat barley and after about 3 days of that, I felt bad again, retreating to week 1 & 2 foods. " ______________________________[That is the proper strategy&#8230;.is barley the only food you reintroduced at that time, are you certain? And what exact symptoms appeared? If you then remove the barley and the symptoms disappear then the dietician I am sure would be able to tell you that barley is either a pseudoallergen or a true allergen depending upon the type of reaction so you need to avoid barley too&#8230;add it to the "red foods list"&#8230;etc] ________________________________"I lost 7 lbs because I could not eat bread/pasta. " _________________________________[Ah, you cannot eat wheat bread or wheat pasta...are you safe with rice, for example, and can thus eat rice pasta? Did your dietician give you some other grains from which breads can be made...they are not the same but its better than nothing.







This weight loss is likely due more to lost water weight &#8230;which is just scale weight&#8230;than fat or tissue. 7 pounds is about average for the weight loss after going on an antigen free diet. The mediators being released alter vascular permeability in the bowel..and elsewhere...as that is the job of some of them&#8230;normally this is to let lymphocytes and other immune cells get out of the blood vessels and to the site of insult&#8230;infection. Instead some dietary componenent is making this happen. This is why biopies show lymphocyte aggregates at the root ganglia of the nerves in the small intestinal wall.When they do that, alter permeability, it alters fluid balance too&#8230;.I lost 7 pounds too..water. Once the patient is stable and if she wants to gain weight the dietician can do an intake analysis and show you how to increase your caloric intake 300-500 calories a day to gain some weight if you want] ___________________________"Was eating mainly meat and salmon and vegetables. Feeling progressively worse, I phoned Jan the dietician and she said go right to the rotation diet...." __________________________________[that is OK too, removing any food that was introduced which caused symptoms...or keep in mind that many reactive foods are dose-dependent. if you have trouble isolating the local reactions..pseudoallergy...in the patient becasue you do not have a very specific intake log and symptom log kept fr at least 10 days...you can take a short-cut to siome relief by jumping to rotation. This will reduce the intake dose as you spread the hidden ofending food over a three day period ....one on two off...and often this will reduce the intake dose to below the provoking dose. This may have been necessray at that point for you due to the nature of the data available and how you felt...sometimes the patient has gotten such bad pseudoallergy response but is feeling bad and not ready to stay in the phased diet so you have to make a clinical jusdgement of which is least likely to cause the patient to recidivise...and then you have to start all over] ____________________________________"I guess that would have been the beginning of October. It was hard to catch the rhythm of making those foods, but I resolved to eat everything on the list and did gain back 4 lbs. [good I think...]"this is a concern for me as I am 5'9" and usually weigh at most, 132) Last week, after much waiting and eating right (no, I don't cheat, no wine, beer, chocolate, pizza has passed my lips since July!) I had a breakthru of 4 great days in a row last week. On the last day I ate some pinto beans and by the next day felt like #### again. ____________________________ "this is probably what is called a lectin-reaction..the most common form of pseudoallergy&#8230;each lectin containing food like legumes or wheat has its own unique lectins. Some people get a reaction when a specific lectin can connect directly with the mast cells in their intestine and casue them, to degranulate&#8230;..thus bringing on symptoms but no detectable antibody ion blood or cellular reaction in blood is visiable. Lectin reactions are usually dose dependent, also since they involve tissue cells you cannot se them in vitro unless yo actually take out tissue and expose it live to various lectins&#8230;.this is not doable&#8230;instead you watch the oral challenges and when you get a postive resmiove it from the diet] _____________________________"Who knows if I can blame the beans?" _____________________________ [ We do,







see above] ______________________________" I guess at this point it's still an experiment." _____________________________ [Not an experiment, it is a process which a portions of which reqwuires structured experimentation. This is why it is a "program&#8230;". Disease Management of IBS is like any other condition wherein DM is used&#8230;a series of structured experiments to isolate the casual basis of the problems then remove them. This takes time, some short some long but you do get there. Took me over a year to get to 100% but I was very bad. It is aided by the use of new technology like MRT&#8230;without it you would likely never get this far as you would also be trying to isolate the cell mediated reactions as well as the pseudoallergy reactions&#8230;almost impossible&#8230;not to mention enzymatic-related intolerance which can also be isolated with this protocol] ___________________________________"I am comfortable enough with the food choices and my weight re-gain that I am now cutting out suspect foods (but remember, all these foods are in my green list anyway!!)" _____________________________________[Again, they are safe from a cell-mediated reaction perspective, the most common source, but no the only source, of food intolerances] ____________________________________ "If anyone has any strategy advice at this point, please let me know. I had hoped to find a handful of foods that were bothering me and avoid them and be cured. WRONG-O! " ________________________________________[No, actually you are RIGHT-O&#8230;.







The process is finding them...what sux is that you have a bigger handful of foods to avoid than some other people do, and you suffer multple-mechanisms of food and chemical sensitivities.This is a drag but it is your body dictating to you and you have no control over it so don't blame it&#8230;it has the "can't help-its". Do you have any history of repeated courses of oral antibitoics in your past, he queries?







] ____________________________________"I have also to remember that I've got IBS with food sensitivities at the same time....so we have to consider where they sypmtoms are coming from. I find it very interesting to monitor my energy level. When I feel REALLY bad, it;s like a big hand squashing me down on the couch and I can't get up...so tired, pains up and down my arms and legs." __________________________________[These are the effects of proinflammatory mediators circulating throughout your bidy&#8230;they are relaesed as if you have an infection which you do not so they make you feel sick in many ways as they effect many organ systems&#8230;when they remain inside the cells where they belong you will feel fine]  ___________________________________" I think to myself "ah, waves of histamine, " ___________________________________[and leukotrienes and cytokines and all manner of chemicals may be involved&#8230;up to 100 differrent ones have been isolated] ___________________________________"...just like the fatigue I used to get from ragweed allergy before my shots!" ___________________________________[BINGO] ___________________________________"This week, none of that, just gut disturbance and rectal soreness. All of this is hard to figure out, but the GREAT days give me hope. ____________________________________[SORRY to be so fast and blunt which is not my usual style&#8230;.It is actuaklly not that hard to figure out on this side of the table, what is hard is for the patient to implement the findings 100% in daily life...as well as getting through the process of figuring-out. It can eb tediuos and someohow the easy time is always had bey "the other guy". I understand.I am sorry to be so direct today...I just am short of time and feel like garbage myself for other non IBS reasons&#8230;. Please discuss this posting of mine with Jan. If you have any questions still that are not clear you can post it and will answer eventually or you can email me personally and I will be glad to expand upon it or to add another person, who is more technical than Jan and I, to your team. Our goal is that you understand what is happening as when you do, then you can do it better]You are getting there...you can see it....but you have tougher row to hoe than some people. Your immune system dealt you bad cards but our people do know how to play.Some of these other processes which occur can be better understood if you read Brostoffs book:"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, London http://www.amazon.com/exec/obidos/ASIN/089...6487508-3420903 ______________________MNL


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## karoe (Sep 22, 1999)

Mike and WD40, Thanks very much for your responses and encouragement. Hearing about other people's experiences is very valuable, as you both know.Mike, I will reply when I get a chance, I am very busy at work today and may have to do it next week. I appreciate your promptess in replying, but warp-speed wasn't necessary







Rest assured that I am reading the Big Book of Food Sensitivity by Brostoff.


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## karoe (Sep 22, 1999)

Okay, Mike, I'm back.I'll respond to each of your comments individually:1) I said that week 2 I started branching out to week 3 foods and felt bad again. Total new foods probably 4, for the week. I am going to guess at white potatoes. And you know, when I could have them I ate them three or four days in a row! The problem is, as you know, the reaction is neither immediate or clear cut. I could do a new food on each of mon tues and wed, and if I had a reaction, not recognize the culprit because of the delay. I probably should have added one new food per WEEK! I totally understand the difference between the cellular level reactions and the localized reactions in the obvious foods for me like corn, which I have never been able to eat. Corn is a localized reaction, so are reactions to too many lentils, too many pinto beans...the kicker is I now see that with a localized reaction I don't get the FATIGUE and muscle aches I get with the cellular level ones. That's a big discovery for me. I am working now to weed out the stuff that the Leap test would not have caught, I guess. I wonder which really wierd foods I could eat with no problem since I would eat them so rarely that I'd have no sensitivity to them??? Squid? Brains? Seaweed?2)Barley: I ate it after my first GREAT week and felt bad again...well, I can't say for sure what it was, as I probably had a few new foods, but I am going to suspect it because of the gluten. As I said above, the reaction was not clear cut.3)Went back to eating week 1 & 2 foods when I ran into trouble....did not regain the GREAT feeling, but felt mediocre and actually BAD while eating the week 1 and 2 foods or trying others. After a couple months of that, I lost weight and Jan felt that I was developing sensitivites to THOSE foods, that's why she said go right to the Rotation diet. By that time, I was so hungry I just had to eat, so I've been eating whatever is on that list that I can get my hands on (duck? crab? that's not too useful!!!!) just to eat. Could I have handled it a different way? 4) Rice bread and pasta -- oh no! tried both, would rather just eat rice. had trouble with constipation in the early days of the diet because I used rice as my primary starch. Now I eat Kamut cereal, spelt bread, and rye bread one day a week. 5) I will say some weight loss is water weight. I am a skinny lady but when the gut is kickin' in, I look like I am pregnant. When I am doing GREAT, the bloat goes away. I envision my guts bloating up like a bee sting when they are annoyed. Right?6) I have a good intake log since July 1 except (dammit) for the couple weeks preceeding my 8-day GREAT day break thru. I started keeping symptoms later. I'm kinda searching for a readable organized format to put this in; I'm sure you have experienced the frustration of trying to match food and later effects....7) my big courses of antibiotics were ages 4-8. I am now 49. In the past 5 years I think I have had antibiotics twice, each for 10 days for sinus infections or bronchitis. I have had none in the past year. I had intravenous antibiotics during foot surgery in 1999.8) Thanks for confirming the fatigue as an allergy symptom. It's really beyond fatigue, it's actually feeling sick all over. Try feeling like that 4 out of seven days of the week for a few years!!! I guess you know. Any comment on the rectal soreness? In my imagination, I think that my gut suffers from an unfriendly food, so the rectum and anus get involved when it passes, but also the skin immediately around it gets sore too. Is this a contact reaction to whatever is in the food waste?9) Mike, I have learned to be patient in life and appreciate small mercies. I am very grateful to have even the time that I have had so far, pain free. I have the hope that I may eventually figure this all out and beat it....any help you and your team could offer would of course be endlessly appreciated.K


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## Mike NoLomotil (Jun 6, 2000)

Hi k....Sorry so slow again have notbeen here...distracted. Let me look ast couple of quick things which may be useful to you, by numbered paragraph in your post...1) LOL...brains....you can have mine they are turning to mush. On the potatoes, that would be a good probbaility...and eating them the way you did...freely...IS how to find them doe-dependent reactions that hide-out from normal oral challenge and from in vitro testing. So indeed if you took them back out and the symptoms receded you proably did find another bullet in the gut gun.Your joke is funny, but it also does pioint out the truth about food intolerance. for example, we have a lab in Kuala Lumpur Malaysia which uses our technology (a doctor who caters to the upper class and aristocracy there reaallllly wanted to offer this) and we developed and entirely unique group of test foods specific to the local diet. It would reflect the fact that they are probably going to lose tolerasnce to things they eat regularly, and not things that they do not eat regularly.To narrow down you experimentation with new foods, be sure to not only tray food you never eat, BUT before doing so cross-check the food families information in in the LEAP book and with Brostoffs book you have to watch for hidden chances of cross reaction. If a food you are sensitivie to is in the same family as the food you want to try, the possibility of reaction is HIGHER, not guranteed, just higher, than if it is wholly unrelated to the food family of any reactive food.Oh Brostoffs NEW BOOK is out...the BIG ONE he and Dr. Challacombe have been editing for Doctors on the food allergy vs intolerance subject. As soon as get one I will tell you if it is worth patients ionvesting in too, or if it is just too expensive and "dense".2) Yeah I would hold it out until I was stable agin, then if I really wanted to find out put it on the list of individual oral challenges to try from an asymptmatic baseline. Then agin if you don't like barley, give it to the dog







3)yeah if that is what happened then it was best to go to the rotation...one thing I may want to do when you are on a stable diet is retest you. On me. You just have to let me "use" the data if we want to do a case report (no names). You may be another who is just like me..Some patients reactions morph very rapidly and they are very hard to manage...I was that way but I have a regimen I have been experimenting with which has helped this tremensdously. It is a combination of OTC immunomodulators...After almost a year on this particular combo I am eating things that I could never eat all my life without getting a serious attack.You and I may want to look at this, but we have to wait untikl after I get my surgery done, then I am back in fighting shape. Keep that on the table and lets talk about it in a couple weeks in more detail.Handled it differently? probably not unless one had a food-sesnitivity dietician living with you to work on every meal. Not practical. I think Jan likes her mountain.4). Ah yes this can be one of the fun effects...then comes pectin-loading to offset it. You really have to like the stuff to do that...5) Right. Good image...between water and gas...and depending upon what time of the month as you can get a double-whammy water retention...indeed I can beleive it.6)yes...maybe the one layed out like Guillories book would be easier. Lay out each day hourly, with a food intake column next to it, item and quantity, then a symptom column along the same time-line.The trick is that with most people with a lot of instability a 10 day record is needed for anlysis as you cannto find any PATTERN in the 3-5 day log. I can rememebr with a couple toughies going over a 30 day log very carefully before the pattern emered as the intake-response cycle was a full 72 hours for a certain food. when they are combinant and localized, and not IgE OR cellular so RAST/ELISA and MRT all put together still do not isolate them they can be a subset that can never be found. This is a minor subset though. 7) Did you ever see that old show DRAGNET? That music when a clue is revealed (daaa-da-dum-dum!) just wen through my head...it is beginning to look like one of the more common root casues of lost-oral-tolerance is dysbiosis....we may want also to look at very wide spectrum probiotics as an adjunct as well.8) yep. sick all over..systmeic effect of the nasty mediators coursing through the plasma all over da bod'. The rectal action can also be related through a number of mechanisms including direct inflammatory response to an "antigen".For example one of the more interesting things that has been seen over ther years many times is an increase in tissue mast cell density at the outflow tract of the small bowel (ileocecal junction). Mast cells "migrate" to an area of chronic insult...just look at tissue mast cell density in asthmatics vs controls. WHY would mast cells concentrate where the digestive "products" flow OUT of the small bowel an into the large bowel...a site of chronic provocation? Or do they just like to settle in there in diarrheic IBS patients? he queried rhetorically...So a response in the "distal tissue" so to speak may also be more than "mechanical trauma"...many sufferers have indeed shared your experience with this...and since the whole point is the expulsion of something from the GI tract of something perceived as a hazrd, and the whole system down there is vascularized and has tissue immunocytes as well, it is logical. It as notbeen a normal practice when doing the lower GI exams in IBS patients to analyze tissue samples for mast cell density. When it has been done experimentally it shows up compared to normal controls....and in vivo exmaination and food challenge of the proximal small bowel isolates the heretofore hideen inflammatory response which defines the small bowel as the shock organ, not the large bowel...rather it is an affected organ so to speak.9) That is the advantage of the way the Homecare Program is set up...work with the patient as needed to get the deired outocmes as long as the patient works with the protocols. Many are easy but some are hard, so that does not alter the staffs dedication to the clients best-results.It is a team effort as much as is necessary...Enjoy the day! Ignore my typos...MNL


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## karoe (Sep 22, 1999)

Mike:Thanks for the response, and no, I don't want your brains on a plate, they won't do me much good there!Okay to wrap up loose ends of our discussion--Yes, let's talk when you are finished with your procedure. I would be happy to retest my blood and you are welcome to use the results in a study. I would like to hear about your results with the immunomodulators. Mike--- funny how you throw around phrases like "re-stabilize" "become stable" I have had two periods since I've been on the LEAP diet when I have felt what I think you refer to as "stable" and I am referring to as "GREAT" One lasted 8 days, one lasted 4 days!!!! All the other time since July 1 I have felt 10% really bad, and 90% mediocre. PLease bear that in mind. I am only just starting to see some stand out changes. Last week I think I had 2 "great" days and a few "good days". As I write this in my office however, I am anticipating running home to hit the tea substitute and the bathroom!!Maybe we can talk about what Home Care is. I'm not really sure.I will work on a good, long food intake and symptom diary in an easy to read form. Many thanks for your kind interest and help.Karoe


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## Mike NoLomotil (Jun 6, 2000)

Hi karoe.In the HomeCare you have reatined your own LEAP dietician who works with you for a flat fee for a specific number of private consults over a period of upt to six months to help work through your unique needs. or you can work with her on a fee-for-service basis as-used...a direct pipeline to the support system.Indeed your pattern of evolution of progress is not unusual just atypical. So was mine for that matter...it was like thatexercsie where you draw a circle, redcue the radius by half and draw another within, then half it again and draw one again, then half it etc.....the closer I got to 100% the hardder the last increments were as it took some work to find some things that were very dose dependent and which were so much so that it created a 2-week cycle. Once that 2 week cycle repeated itself enough times finally figured out what it was: NON cellular and non-IgE reaction to wheat "lectins" so it would not turn up on the allergy nor mRT assays since it was localized.Eventually as I ate wheat each day enough mast cells were degranulating at the same time to precipitate an episode. So then the gut flushes out...don't anything but water and juice for a day...or fruit etc..no lectin...then reyrunr to normal diet and it began to build up again over time.Went wheat free for a long time now after some eyars my wheat toelrance is restiored enough that I eat 2 pices taost for breakfast 2 pieces bread or roll for sandwich with lunch or swap for dinner rolls. No problem. Can even eat 2 slices of certain pizzas now.This last step was worked out over a period of more than a year. In the first phase the symptoms dropped 50% in month one...another 25% in month 2...and were down 75-80% by month six...afteer that it took twelve more mkinths to get to that 99% point.Soetimes there is just something that I get expsoed to which produces very mild symptoms and I just cannot put my finger on it or it was something I knew when I did it but did it anyway.But at least I am not locked in the bathroom for 18-24 hours at a stretch anymore!Anyway, this is why we counsel the physicians, dieticians, etc. to cousnle their patients to expect month "program" to reach "best results" on average. Then the ones who do it in 30 days are positively-shocked, which is a good thing, and the sicker folks do not tend to get discouraged if they are objective.Just a "I can relate" note.laterMNL


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## Jan LEAP RD (May 19, 2002)

Hi Karoe,Doing a bit of lurking. I let Mike know that we have worked together. (That's what is meant by the LEAP "homecare" program. You sign up from home, work with the RD from home, as opposed to doing the program via your local MD and dietitian.) Maybe Mike's support is good, as it is more difficult to stick with things when you don't respond as well as some lucky clients who get better in a week. But, even those few GREAT days sure help give hope, don't they?One thing that I'm suspecting for another client, is endometriosis. Especially when I started reading that most patients with 'endo' have to see 6 separate physicians before it gets diagnosed.From www.endocenter.org here is a list of symptoms and some information.(Now, Mike, at least we know this isn't any of your problems!! At least we assume so!














)What are some symptoms of Endometriosis?The amount of pain associated with the disease is not related to the extent or size of the implants. Some women with Endo have no symptoms, others have debilitating pain and even infertility. Some signs that may lead you to suspect Endo include - but are by no means limited to - any of the following:chronic or intermittent pelvic pain dysmenorrhea (painful menstruation is not normal!) infertility miscarriage(s) ectopic (tubal) pregnancy dyspareunia (pain during intercourse) pain after intercourse backache leg pain nausea vomiting abdominal cramping diarrhea rectal pain constipation painful bowel movements blood in stool rectal bleeding sharp gas pains bloating tailbone pain blood in urine tenderness around the kidneys painful or burning urination flank pain radiating toward the groin urinary frequency, retention, or urgency hypertension coughing up of blood or bloody sputum, particularly coinciding with menses accumulation of air or gas in the chest cavity constricting chest pain and/or shoulder pain shortness of breath collection of blood and/or pulmonary nodule in chest cavity (revealed under testing) pain in the leg and/or hip which radiates down the leg Fatigue, chronic pain, and allergies and other immune system-related problems are also commonly reported complaints of women who have Endo.Remember, it is quite possible to have some, all, or none of these symptoms.Because Endo symptoms are so inconsistent and nonspecific, it can easily masquerade as several other conditions. These include: adenomyosis ("Endometriosis Interna"), appendicitis, ovarian cysts, bowel obstructions, colon cancer, diverticulitis, ectopic pregnancy, fibroid tumors, gonorrhea, inflammatory bowel disease, irritable bowel syndrome, ovarian cancer, and PID.How is it diagnosed?The only way a positive diagnosis of Endo can be made currently is via surgery, either a laparoscopy or the more invasive laparotomy.How Can it be Managed?The most effective thing an Endo patient can do is to find a specialist who treats the disease, such as an experienced gynecologist with a history of treating Endo patients, or if infertility is a concern, a reproductive endocrinologist.Well, just a FYI, since it's 'missed' so often by even OB/Gyns. (Here's another good article on how often Endometriosis is 'missed' by MDs. Any thoughts?


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## ohnometo (Sep 20, 2001)

Just wanted to say for those who suspect Endometriosis please get second and third opinions. They said I had that when I was 25 and did a total Hysderectomy on me...It DIDN'T need to be done ..PLEASE GET MANY OPINIONS FIRST before someone wants to start cutting....My symptoms was from crazy old IBS and CVS


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## Mike NoLomotil (Jun 6, 2000)

OMIGOD!!!! JAN!!! _____________________________________"Especially when I started reading that most patients with 'endo' have to see 6 separate physicians before it gets diagnosed" _____________________________________Don't be so quick to rule it out! Since I had at LEAST 24-25 doctors over the years do nothing for my IBS, that means (at a 6:1 ratio) I am at least 4 times more likely than the norm to have the problem...this may offest the statistical effect of the gender difference.







Where's that number to MrsNL's ob/gyn???? MNL[I can hear it now "Wow. What the hell is MNL smokin'? Gimme some."]


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## Mike NoLomotil (Jun 6, 2000)

OH and OHNO does piont out another statistical flipside to the endo-IBS comorbidity issue....I read an editiorial somewhere that suggested that a large % of hysterectomies would be unnecessary if the diagnosis and pathogenesis of IBS were better understood by all....especially those caregivers whereby the patient first presents with the chronic abdominal pain et al...the ladies gyn....







....cannot locate he reference at the moment...sooo many papers.....MNL


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## Jan LEAP RD (May 19, 2002)

Donna writes:


> quote: Just wanted to say for those who suspect Endometriosis please get second and third opinions. They said I had that when I was 25 and did a total Hysderectomy on me...It DIDN'T need to be done ..PLEASE GET MANY OPINIONS FIRST before someone wants to start cutting....My symptoms was from crazy old IBS and CVS


How HORRIBLE, and thanks for the reminder to get numerous opinions. And, I'm not an endo specialist by any means, but I thought the treatment was more laporoscopic surgery to remove the endo tissues that were creating the problems. IF you have 'stray' tissues in other parts of your GI tract, how does a hysterectomy help that??Anyway, as always, more heads are usually better than one. . .


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## Julia37 (May 9, 2001)

Well, I don't have endo, but I have had IBS cramps and menstrual cramps at the same time (fun!) and I'm thinking some of these doctors are really jumping to conclusions - It only takes a little extra IBS cramps with menstrual to make it *seem* like endo...


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## Mike NoLomotil (Jun 6, 2000)

If only they read the stuff about prostaglandins, IBD cramps, and menstrual cramps there would be a lot less guesswork and a lot more thought of how to deal with that issue directly...but the link is not made in the literature that the typical OB-GYN reads...and very few peope in the USA understand the mechanisms of symptom generation in IBS diarrheics...much less OB-GYN'sMNL


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## karoe (Sep 22, 1999)

Mike, I'm glad to read that your surgery is over and that you are on the road to recovery! I am very busy at work these days but I plan to finish up copying my food diary for Oct to Dec the week between Xmas and New Years, and I will fax it to you. If you would be so kind, please send your fax #.In the meantime, here are twoi exciting dietary mysteries for you to "evaluate":First, due to my rotation diet I eat kamut, spelt and pumpernickel bread on one day only. There is a clear connection between spelt bread and tons of gas that I get. Also, puffed kamut cereal with soymilk and pumpernickel bread (the flat kind from Germany) do the same thing. There is a four hour delay, and then the gas starts and lasts for the rest of the day. There appears to be a pumpernickel made locally that I can tolerate-- I have to get some more and "challenge" my system with it. What to do? What does this mean? Remember, wheat is a yellow for me and these things are in a related family. Second: Now this is amazing. I am able to run about 3 miles twice a week (when I feel okay). It's cool here in Atlanta, about 40 degrees at night. I have noticed that I have been sloppy about using my inhaler twice before running (for excercise induced asthma) and it doesn't seem to matter. Last night I ran my route in 40 minutes (there is some walking) and had only taken one puff. I was completely clear the whole time. !!!!!







What do you think this means? I have now been off wheat for six months...I've heard other people who have had wheat sensitivities do better with asthma after giving it up. What is your opinion? I will challenge this too, the next time I will run and use no albuterol.Finally, I just had a real good day, and then a GREAT day, and of course that's so encouraging. I can't tell you how wonderful it was to plan an afternoon of christmas shopping with my Mom and be able to go from shopping to dinner to driving home, just effortlessly. What a blessing! My best christmas gift ever.


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## mrysgrl (May 9, 2002)

I hope you are doing okay MikeNL.Can you explain what pectin-loading, in one of your posts above, means.Thanks again


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## Mike NoLomotil (Jun 6, 2000)

KAROESYRUP and MRYSGRILL:Hi. Sorry to be so slow responding but I can actually only get here about an hour a day now. As soon as I felt better MrsNL and StepsonNL hopped a plane to Colobia to see the family for the holidays (first time in years) leaving me with StephanieNL to take care of an bottles of Percocet and Darvon to enable me to do so. Luckily she is 4 1/2 and quite well behaved (except for being as typical egocentric psycho) so I can manage her, the job and recovery....but no free time.I have to move fast so bear with me as I answer quickly.On the gas vs. the breads, I think you are woeking with Jan, right, on your dietary management? The onset of the gas about 4 hours after ingestion makes sense in the context of the transit time of solid food from the mouth to the upper to mid small bowel and then any actions which may occur.I don't have your results or history to refer to, or diet, but have you reviewed the entire list of ingredients in each bread with Jan? I almost asked what your results where for yeast mix until you said flat-bread...which kind of makes that drop off the map for the moment.Also, sometimes we have ppeople with normal gas production but which moves slowly, and when certain eating patterns result in peristalsis picking up speed all the gas that might be passed in a normal 24 hour period (15-20 passes is not abnormal) can come all at once over a 2-3 hour period and it seems like OMIGOD WHY DO I HAVE SO MUCH GAS.I am not naturally a gassy person....but certain complexes like a starhc load (big baked potato) will result in a period (uauslly evening) of 3-4 hours with non stop seemingly ridiculous gas. BUT I will have had lamost none all that day anmd almost always have literally none the next day.jan can talk with you about why copmplex carbs can seemingly be gassy (think flora and digestion), but if she is not your RD when I ammback in the office ina few days and have access to all my books and records I can give you some stuff to read and se if it is applicable to your situation.Hows that gfor equivocating? Some thigs require sopme sleuthing to get to, which I am not in a plce to do at the moment but she may be.Oh, and MRY, the "pectin loading" is just a quick way of saying eating a lot of raw fruits which have lot of pectin in them. Or it can also mean taking pectin supplements.It has just been an observation of my own, non scientific, thattaing soluble fiber supplements in the way they are ofetn prescribed result in the patient getting a big bolus of fiber once or teice a day being shived down the tubes. his si not well tolerated many times, and then we assume that the patients problem is the fivber supplementation. When actually it is not the fiber but the way we give it. I recommend the split-dose appraoch like is used with medication. You don't take a 24 hour dose all at once. You spread it out. Ame with fiber. spread it out. Split doses. TAke some every 2-4 hours not once ona rising and once on retiring.better still, though, is to take it in its matural form in fruits that are not reactive. the old style "4 fruits a day" did not evolve from someones imagaination. It is the natural and best way to get adeuqate soluble fiber...and you don't eat a whole basket of pears at once, but spread them out over the day.So I don't remember the context of the "pectin loading" comment but it probably had something to do with one of these things I just menationed. Hope tat helps..Steffie wants her Cheerios now...back later...and daddy wants his meds







MNL


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