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Discussion Starter · #1 ·
Hey!Came in the mail today, I'll post when I have some time to get it condensed so it makes good posts. I got diet information.Supplements that may be useful.There is also a newletter that may have some stuff in it.Anyway thought I would let you know it came, and I'll get some of that info up over the next week or so.K.
 

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Thankyou. That would be very helpful, as I want to follow it up.A couple of years ago maybe, you gave an address for a site which dealt with the same subject. I filled in a questionnaire which they sent, but never got a reply from themafter that.
 

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Thanks for the heads-up! I was wondering when you were going to get the other info. I'm very interested in what their recommendations are and if they might help LG sufferers as well.
 

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Discussion Starter · #4 ·
Dietary information.The main thing to limit in the diet is choline. You do need some in the diet you just want to avoid over-loading the system.Foods to avoid:Whole eggs and egg yolks.Organ meats (red meat and poultry)Peanut butterCruciferous veggies. (some people may tolerate a few brussel sprouts but other may not as they are lower in choline, but high in indoles that can be a problem for those with severe TMAU)Most Fish, especially oily fish or dark muscled fish. If you want fish stick to lean light colored fish meat.Grains: Whole grain barley, rice bran/brown rice, whole grain rye, durum wheat (usually found in pasta) wheatena cereal.Legumes. Soy beans or soy derived products., blackeyed peas, chickpeas, Lentils, mung beans waxbeans, snap beans and red beans.Crumbly white cheeses may be better than aged or strong smelling cheeses. So feta may be OK when other cheeses are not.They recommend rice milk or lactaid milk if you tolerate them.High tyramine content foods: Aged cheeses, meat extracts, yeast extracts and whine.The recommend avoiding sugar added to foods in any form.This site lists the choline content of foods.http://www.nal.usda.gov/fnic/foodcomp/Data...ine/Choline.pdfSince you do need some choline they recommend that when you do eat foods with choline in them you eat small frequent meals so you do not eat more than you can absorb at one time. Unabsorbed choline is degraded to methylamines by bacteria in the colon.Additionaly they note that any food that smells strongly going in may smell strongly coming out, so you may want to avoid any strong smelling food. So things like fresh garlic and onions and alcohol.K.
 

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I have print the document.I agree onion are quite damaging for me as well as aged cheese.THANKS
 

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This site might interest some of you too. http://abcnews.go.com/Primetime/story?id=2288096If gas emanates from the skin, couldn't it also leak out through the anus? Also if TMA is a volatile gas, doesn't that mean it readily changes from liquid to gas at normal temperature? Such as some of us call leaky vapors?Why I relate my LG to being from the anus is because of the discomfort I often have down there, along with very erratic digestion and my ever-present IE.In response to the article about choline food sources, I tell you, without a shadow of a lie, that over 90% of my diet is from the listed food. Please don't interpret this as 'yelling'. Rather it's an expression of frustration of how I'll have to change my diet so radically if I follow through with recommendations. I have no idea how I'll be able to eat without drastically losing weight and energy, but maybe it's something I'm ljust going to have to do.Maybe if it doesn't help with the LG, at least I'll smell nicer.
 

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Discussion Starter · #7 ·
One of the things with TMAU and some of the leaky gassers is the "I don't smell it".Usually for an odor to be so present you cannot smell it at all there has to be more than just anal leakage.When I can't smell myself at the hog farm every inch of my skin, my hair, my clothes stinks.Even when I have frequent farting of smelly farts (so a goodly sized fart every 5-10 minutes which is my maximum ever gas production even when I was really gassy and well above normal fart frequency for a day) Each and every fart smells.The volume of gas you would have to produce leaking only out the anus to so completely fill a space that you can never smell it might be extraordinarily large.I wouldn't be suprised if the fart gas has some of the odor that comes from the skin but the sheer size of the skin vs the anus can mean a lot more could come out the skin.Processed grains seem to be better than whole grains, and they do mention small frequent meals, but really there is a heck of a lot of food that is not on that list and food that you can get energy out of and maintain weight.K.
 

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Discussion Starter · #8 ·
PS. Organ meat only rules out the liver and kidneys and hearts and stuff. Chicken, pork, turkey, and all of that is still on the menu as are lean white fishes, potatoes, white rice, white bread and lots of carbs are still OK, really, this can be done.K.
 

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Discussion Starter · #9 ·
pps. The goal is not a choline-free diet.If you think you have to do that you might think there is nothing left to eat. You need choline in the diet! You just want to limit the amount you eat at any one time so you absorb all of it.
 

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Sorry, I read your extract too fast before replying. I thought that all red and white meat had to be avoided. I had not noticed that it was organ meat.I do understand that you still need a certain amount of choline, but it might pay to keep it quite low initially.Thankyou for the research. I would like to ask my doctor whether I could get tested, but I don't know if they have such tests here or whether he would be even interested in following it up.
 

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Discussion Starter · #11 ·
I thought maybe you had read meat rather than organ meat.I think those with the biggest problems may be those facing multiple issues as often the diet that is good for one thing is bad for another, so people may have to decide which thing is the most important and follow mostly those guidelines but keep in mind the other issues.K.
 

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Re the intake of red/white meat, I want to refer to your comment that if it smells strongly going in, it will probably smell strongly going out. I usually boil or dry-fry chicken breast every morning to take with me to work for my evening meal there. Sometimes when I open the container there is a very strong odor, and I guess you could call it more sulfurous than anything else. So it is more than likely that it comes out through the pores of my skin or through stinky farts.Some of the LGers actually refer to their farts smelling of food that they had consumed previously. I mentioned the following anecdote a long time ago, but it is pertinent to the topic at hand. At one stage, I was eating up to 5 cans of tuna a day. Someone at work told me one day (in front of everyone else) that the smell of fish from my body could be noticed right across the room. Apart from the fact that this tactless gal completely mortified me instead of telling me discreetly, she did me a favour by alerting me to the problem and I didn't eat canned fish for ages after that.
 

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I LIKE THE IDEA OF THE FOOD WHO SMELL CAUSING EXCESSIVE GAS.It makes sense,i will have to take a look more closely to this diet.
 

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Discussion Starter · #14 ·
This isn't about smelly food causing a change in the amount of gas. It may change odor, not total production.It is about people with a metabolic problem who proces a particular nutrient into a smelly compound.K.
 

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Discussion Starter · #15 ·
quote:At one stage, I was eating up to 5 cans of tuna a day.
Tuna according the the table that came with the diet info, has 210 mgs of free choline per 3 oz. So you could be getting a really large dose of choline (not to mention the tuna odors itself).To compare 3 oz of cod has 51 mg free choline and 3.5 oz of turkey breast has 31 mgs free choline.
 

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Discussion Starter · #16 ·
Here is the testing facility info I had in an email.I may have posted this elsewhere but I'd thought I'd keep it all together.How to approach the doctorThe way to approach the doctors is to simply say "I think I may have a rare metabolic disorder called Trimethylaminuria (TMAU) and would like to get tested to rule out whether or not that is what I have". The doc may say "I've never heard of that" and the patient should say I saw a report on TV or whatever, and this is a report on it. The doc may say "I don't know how to test you either" and the patient can say "I have a list of the testing centers in the US". "I really need you help. Could you please check into this and get back to me? I really could use your help because the problem is making my life difficult. Anything you can do to help me would be appreciated." List of Testing Places** These facilities are diagnostic labs and not Medical Centers. Please contact the facility directly for specific instructions, prices, etc. â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"John Cashman, Ph.D., Director**/The Human BioMolecular Research Institute 5310 Eastgate MallSan Diego, CA 92121Ph: 858.458.9305 Fax: x9311 Email: ledcash###aol.comwww.hbri.orgTesting code: U & B available Overnight-mail your specimen to HBRI for testing ordrop-off if you live within the geographical area. â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"George Preti, Ph.D., Member**/Monell Chemical Senses Center3500 Market StreetPhiladelphia, PA 19104-3308Ph: 215.898.6666 Fax: x2084 http://www.monell.orgTesting code: U & B available In-person testing done in Philadelphia by appointment only. There is currently a 6 month waiting list. â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"Contact, Susan Tjoa, M.Sc. or Paul Fennessey, Ph.D. University of Colorado Health Sciences Center4200 East Ninth Avenue (C-232)Denver, CO 80262Ph: 303-315-8175; Email:Susan.Tjoa###uchsc.eduhttp://Testing code: U available Overnight-mail your specimen to UCHSC for testing ordrop-off if you live within the geographical area. Dr. Fennessey and Ms. Tjoa work closely with Dr. Preti at MCSC. â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"Contact, Ms. Jan Woodall or Ms. Fran Soderberg in the Metabolic Lab for information on testing.Hours are 6:30 am to 6:30 pmPh: (501) 364-1311 Fax: Email: Soderbergfb###archildrens.org For long distance testing: Testing code: U availableYour doctor’s lab will overnight-mail your specimen to ACH or you may drop-off if you live within the geographical area. The lab will fax the testing protocol and results directly to your doctor. If you live in the area, you can make an appointment to see Dr. Kahler, a great Geneticist. Stephen G. Kahler, M.D.Section of GeneticsDepartment of PediatricsArkansas Children's HospitalUniversity of Arkansas for Medical SciencesPh: 501-364-2966Fax: 501-364-1564Email: KahlerStepheng###UAMS.eduwww.UAMS.orgâ€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€" CANADAContact the testing center directly for specific instructions. â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"Montreal Children’s Hospital/McGill University2300 Tupper, Room A-718Montreal, Quebec H3H 1P3CanadaContact: GENETICS DEPARTMENTDr. Orval Mamer Ph: 514-398-3661 Email: omamer###po-box.mcgill.ca Testing code: U & B availableContact Dr. Mamer before taking any action. Overnight mail your specimen to MCH for testing or drop-off if you live within the geographical area. Other testing options available. â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"â€"Those in the Edmonton, Alberta, Canada area can get information and assistance at the Hospital below; they can provide support and arrange for moleculartesting, give dietary guidance, etc. The specimen will be sent to the above/Montreal Children’s Hospital in Toronto for analysis. Key contact: Ms. Annette AnderwaldDr. Alicia Chan - Metabolic GeneticistAnnette Anderwald, Dietitian8-53 Medical Sciences BuildingUniversity of Alberta Hospitals8440-112 Street,Edmonton, Alberta, CanadaT6G 2H7Ph: 407-7333 or 407-6005Email: amanderw###cha.ab.ca (Anderwald, Annette)Testing code: U & B availableSpecimen will be shipped by overnight mail to MCH for testing . Judy Saltel-Olson, RN, BNPediatric Metabolic CoordinatorGenetics and MetabolismChildren's HospitalFE229-820 Sherbrook StreetWinnipeg, ManitobaR3A 1R9Ph: (204) 787-4014Fax: (204) 787-1419E-Mail: jsolson###hsc.mb.ca
 

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Do you think that foods which are high in phosphorus would cause a strong body odour too?With the TMAU, does the body odour remain after you have just finished showering or are you more likely to have the smell when sweating, eg after exercise or heat? And would a faecal odour be covered under the umbrella of TMAU, when it specifically seems to refers to a fish odour?
 

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quote:Originally posted by Arnie W:Do you think that foods which are high in phosphorus would cause a strong body odour too?With the TMAU, does the body odour remain after you have just finished showering or are you more likely to have the smell when sweating, eg after exercise or heat? And would a faecal odour be covered under the umbrella of TMAU, when it specifically seems to refer to a fish odour?
 

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Discussion Starter · #19 ·
Fish odor is the name given, but only some people really smell fishy.It depends on what other odors are going on and how much of the compound you are excreting.EVERYTHING I get from the organizations say the odor tends to be fecal or rotting garbage more than fishy. At really high concentrations it pegs as fishy, but not everyone is only fishy in odor.When you smell also seems to be a factor of what you eat and your own personal chemistry. Some people smell all the time, not just when they are really sweaty. No amount of showering seems to make much of a dent. I don't know why phosphorous would apply with TMAU? I don't know if it in anyway effects choline metabolism whether it is good or not. All the paperwork I have talks about choline as that is the thing that is processed into the odor compound.TMAU does cause the "I typically cannot smell myself" issue because it is a continuous source of odor and would be close enough to the nose to numb it out effectively.K.
 
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