# A few Questions for Mike NL



## KLG (Jul 8, 2002)

Mike, Could you tell me exactly what the correct name is for LEAP that I would ask my Insurance Company about? I also want to ask you this:I am not good about avoiding what I have sensitivities to. My question is basically about Dairy though. I don't sit around an ddrink mil, but sometimes I will have something with milk ingredients in it as it is difficult to avoid and right now I don;t have a whole lot of time to prepare every single meal of the day) I suspect I have had problems with it my whole life. I was never "regular" growing up, and suffered from chronic ear infections as a child. As an adolescnt up until I went on Accutane I suffered severe acne and was overwieght and had little to no energy and my severe bowel problems were hinted at back when I was in high school and started Slim Fast (milk). My problem is when I have milk, my pulse races, the lymphnodes in my neck swell up and get sore and my throat gets raw and red. My sinususes get congested and my eyes turn crimson red. And my IBS gets unbearable and I get anxious, sometimes like I want to jump out of my own skin. I can't think straight and I feel like it is a strain to even think. I bloat up, I feel drunk shortly after which feels like an endorphin surge, only to feel like I used up all of my "feel good" brain chemicals for the next 48 hours or so since I get depressed and irritated and incredibly tired and burnt out....and did I mention CRANKY? Now why I can't give it up all together is beyond me. I'm a glutten for punishment I suppose. Anyway...the gland swelling and red throat does't always happen, but to me this sounds like the immune system is involved...which would signify a true allergy no? I mean if I continue to drink milk will I eventually have to worry about death as occurs in true allergies? Also, why is it so difficult to lose weight with intolerences. I am retaining a lot of water and I gained 5 pounds that I absolutely cannot lose. I don't eat enough to gain a pound let alone 5????I do have the book at home that you talk about on here about food intolerences and their diagnosis (of course the name escapes me at the moment) but have not had a chance to read it yet. Could you either give me an answer to this or maybe recommend where I could read up about it in the book. Thanks so much!Kari


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## Julia37 (May 9, 2001)

I don't know the answers to all your questions, but this


> quote:my pulse races, the lymphnodes in my neck swell up and get sore and my throat gets raw and red. My sinususes get congested and my eyes turn crimson red


sounds like a dangerous anaphylactic reaction. Such a reaction in greater severity could kill you.Is that motivation enough to avoid milk? Use rice milk instead for cooking and drinking. Order plain meat sandwiches and french fries in restaurants. It can be done, I do it.


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## Mike NoLomotil (Jun 6, 2000)

HI 8Sorry so slow been away delaing with Sick Mom Syndrome for almost 2 weeks...let me see what I can say in the allotted time:LEAP is a Disease Management Program, not the testing involved. The testing for cell mediated reactions to foods and addivies is called Mediator Release testing or MRT.To find out from an insurance payor your physicians ioffcie needs to inquire with the proper procedure and diagnistuc codes to see if they will precertify, otr if they do not as it is new, then the physician submits medical necessity and technical information with the claim, or on appeal, and then the plan decides for exzmple if it will reimburse, for how many units, and at what rate (the max rate is over $12 per antigen).The best thing to do is to have your doctors offcie contact our Physician Liaison Ethan Demitchell at 1-888-NOW LEAP and he can work with them on what steps to take to determine whether testing is indicated, and then how to check if precertification is possible with your plan.On the milk issue it sounds from your description that you may not be "milk sensitive" BUT you may have an actual allergy to one of the several potential antigens in whole milk. The reation sounds like it is rapid onset, not dose dependent, and reproducible. So you would probably test positive on one of the "antibody assays" for milk antigens...based on how you describe it.Desensitization protocols work pretty well for inhalant allergy and most are not worth a damn for food allergy. Avoidance is the only 100% reliabel treatment at this time. The gut symptoms you get from milk are probably not IBS per se, rather the GI symptoms from the local and systemic immune response to milk antigens.Food allergy seems to be prevalent in about 2% of the overall population and milk allergy is one of the Big Eight food alergies. However, it appears from data extrapolated from the literature that food allergy is comorbid in IBS populations at a higher rate...guesstimates are 8-10%.Death should not be a concern, as if you were going to die of an anaphylactic reaction you would not be here with me talking. However you are at this time forced to avoid milk products until and unless you know exaclty which milk fracvtion you are allergic to and thus can isolate processed dairy products which do not contain it. I suspect you have done enough oral challenge though to know which bring on symptoms and which do not.Weight gain and water retention in the food intolerant and/or food allergic person is complex but it can be simplified to the effect of some mediators released into the blood stream and the gut wall which alter permeability by opening-up the tight junctions between the cells allowing fluid to shift from the intravascualr spaces to the extravascualr space.the more chronically you consume an allergic food or a food which provokes non-allergic cell mediated reactions the more fluid you will chronicallly lug aroundMost patients placed on an oligoantigenic diet lose 5-10 pounds the first month...as the stability of the bodies fluid balance returns.Weight gain can also come from simpel food addiction and overconsumption. Sometimes we lose oral tolerance to foods via overconsumption. Small amounts of "innocuous antigens" absorbed via the gut into the lympatics and blood stream via Peyers Patches and the B and T cell "system" allow for down-regulation of immune response (oral tolerance to food but not to pathogens).However a problem can begin with a food which is endorphinergic or serotonergic, for example. WE get hooked on comfort foods for any of a dozen reasons we could expound aupon and we keep eating more and more of them and some people lose oral tolerance. At the same time these tend to be calorie-dense foods...who goes crazy on bags and bags of carrots?....and maybe without further excplanation you can see where a hideoous pattern can be established in some people? So when one breaks the pattern then over time weight loss can occur through several mechanisms...the most obvious being we stop retaining water and we end up ingesting less calories...then there are all the theories about certain mediators which effect lipolysis and lipogenesis etc but that is highly putative.Working with loads and loads of food intolerance victims over some years, fat and thin alike, makes it more obvious that what I just described are usually the primary mechanisms....and I know because I tracked caloric intake before and after dietary therapy for their IBS or migraine from their food logs, and watched tonms of times the rapid 5-10 lb wirhg tloss in the first few weeks...and the cheaters putting it right back on rapidly. Should have done I/O monitoring too!here are the books I think will be best for you to read:IBS: A DOCTORS PLAN FOR CHRONIC DIGESTIVE TROUBLESBy Gerard Guillory, M.D.; Vanessa Ameen, M.D.; Paul Donovan, M.D.; Jack Martin, Ph.D. http://www.amazon.com/exec/obidos/ASIN/088...3369143-6824157 ï¿½FOOD ALLERGIES AND FOOD INTOLERANCE: THE COMPLETE GUIDE TO THEIR IDENTIFICTION AND TREATMENTï¿½, Professor Jonathan Brostoff , M.D.. Allergy, Immunology and Environmental Medicine, Kingsï¿½ College, London http://www.amazon.com/exec/obidos/ASIN/089...6487508-3420903 Time to trot...cath you later...soory so brief these days...also no time to check for typos amny apologies







MNL


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## KLG (Jul 8, 2002)

Mike,Thank you...thank you ...thank you. I hope everything is okay with your mom.I will definitely talk with my doctor. Must I do this even if I signed up for the health plan that does not require referrals? Unfortuntaley my doctor blows off anything I say about milk, like she doesn't believe that it is possible, I hope that they would be willing to give me a referral if I still ned one. I have Aetna, So I will check with them to see if they cover it as well. Thanks for the info. LEAP here I come...I am going to do it regardless of coverage because I can't live like his much longer without going crazy. I may have to wait a little though so I can save up the money. Thanks! I do have the book you mention, ï¿½FOOD ALLERGIES AND FOOD INTOLERANCE: THE COMPLETE GUIDE TO THEIR IDENTIFICTION AND TREATMENTï¿½, as I recetly ordered it at my local bookstore. I haven't had the chance to read it, but defintely will start it this week as well. Thanks so much again. I really appreciate you taking the time out of your busy schedule to give me a very informative answer. Kari


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## Julia37 (May 9, 2001)

> quote:Unfortuntaley my doctor blows off anything I say about milk, like she doesn't believe that it is possible


Could you get a better doctor? I know at least 2 mainstream doctors who are well aware of the problems that are often caused by milk. One of them is my doctor, who suggested I try avoiding dairy and thereby isolated one of my food intolerances. (as far as I can tell it's only to lactose, but I don't like milk anyway and can't have ice cream because of the sugar.)There are many bad doctors out there. I didn't get a good one until my 5th try as an adult.


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## Mike NoLomotil (Jun 6, 2000)

HI IBSHATER........I am just not able to come visit miost days now as I am just too cotton pickin busy...not ignoring the question sjust not here.Lemme asee what you asked....Oh this is a major bummer for you: __________________________________" will definitely talk with my doctor. Must I do this even if I signed up for the health plan that does not require referrals? Unfortuntaley my doctor blows off anything I say about milk, like she doesn't believe that it is possible, I hope that they would be willing to give me a referral if I still ned one. I have Aetna, So I will check with them to see if they cover it as well. " ___________________________________I can just imagine what the doc would say if one of the immunologists who works with food intolerance patients explained that your chronic ear infections as a child are another known red flag for food or chemical intoerance...would probably get apoplectic.IF you are under the care of a physician who does not have an interest in this area or in learning or reading things from other doctors which may challenge their beleif systems there is little value in talkign to THAT DOCTOR about it, unless you just want to come away more depressed than befopre after you get your tail whipped.I been there...imagine me going back to my GI doc who treasted me for years for my so called IBS with no success after NOT having been there for 2-3 years and then explaining to him WHY i stoped coming...how I acheived remission through oligoantigenic diet therapy. His repsonse to the tangibel physicial eveidence sittin on his exam table breathing and medication free and asymptomatic?"That's impossible."ImPOSSible???? Sayonara, Sir.What you need is a physician who is open to or has an interst in or has done some work with dietary therapeutics and/or has studied some on food allergies and intolerances.I do not know where you live...but if you call our toll free number ans as for Ethan DeMitchell he is the Physician Liaison for the company. He could check and see if there is a physisin in your area who is working with this yet.It is very early in the product cycle so there are physicians in about 10 states so far...it will be 2 more years before all the states are served with protocols of what our doctors and dioeticisn developed.But he may alsom for example, know a reputable doctor of integrative or environmental medicine in your are that would be open to discussing these issues with you without dismissing you, even if we don't have an affiliate near you yet.he is in PA the next few days at a primary care physicians medical conference....so you may want to wait until Monday next to call him...just tell him you are from the IBS Self Help Board and Mike said for you to call him and he MUST help you! ;-)Gotta runMNL


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