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Denver TMAU Test Lab survey click here
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USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Wednesday, October 3, 2012

What to eat on a TMAU Low-Choline Diet


PLEASE READ THE FOLLOWING POSTS
On this blog and RareConnect


PROBLEM WITH TMAU DIETS:

The main problem one encounters with recommending specific diet foods for TMAU is that not all TMAU+ persons do well with the TMAU protocol, implying that there might be (probably are) other concerns, as noted in the powerpoint presentation by Dr. Colin HW, MEBO’s Scientific Director in UK, Dimethylsulfidemia, section on TMAU. Some sufferers speculate that their symptoms are triggered because they have adverse reactions to sulfides, dairy products, sweets, carbs, in addition to, or instead of choline.

Unfortunately, if we took into account what every single sufferer thinks triggers their respective odor symptoms, the diet would list one word only – WATER, and a water alone will not sustain life for very long. Therefore, the diet discussed in this post is strictly for TMA produced body/breath odor, and is based on the published TMAU protocol discussed and recommended in the article, Trimethylaminuria, written by Drs. Ian Phillips and Elizabeth Shephard. It seems that even some experts go modifying some of their opinions through time. Also, as we know, we have plenty of expert sources that tell us what NOT to eat, but very few that tell us what WE CAN eat.

ADEQUATE INTAKE (AI) OF CHOLINE:
First, the question is, what is the recommended dietary intake for persons who do not have a malodor condition? What is the Adequate Intake (AI) of choline established by the Food and Nutrition Board of the Institute of Medicine of the National Academies of Sciences? Although the AI for adult men is 550 mg daily and 425 mg daily for women, there are AIs for various age groups as well:

• 0-6 months: 125 milligrams
• 6-12 months: 150 milligrams
• 1-3 years: 200 milligrams
• 4-8 years: 250 milligrams
• males 9-13 years: 375 milligrams
• males 14 years and older: 550 milligrams
• females 9-13 years: 375 milligrams
• females 14-18 years: 400 milligrams
• females 19 years and older: 425 milligrams
• Pregnant females of any age: 450 milligrams
• Lactating females of any age: 550 milligrams

Choline is an essential nutrient neccessary for a number of vital biological functions:
  1. Structural integrity of cell membranes
  2. Cell signaling
  3. Nerve impulse transmission
  4. Lipid (fat) transport metabolism. "Without adequate phosphatidylcholine, fat and cholesterol accumulate in the liver." "Men and women fed intravenously (IV) with solutions that contained adequate methionine and folate but lacked choline have developed a condition called "fatty liver" and signs of liver damage that resolved when choline was provided."
  5. Choline is a major source of methyl groups
  6. Choline may be oxidized in the body to form a metabolite called betaine. Betaine is a source of methyl (CH3) groups required for methylation reactions. Methyl groups from betaine may be used to convert homocysteine to methionine. Elevated levels of homocysteine in the blood have been associated with increased risk of cardiovascular diseases (5).
    Source: Linus Pauling Institute, Oregon State University, http://lpi.oregonstate.edu/infocenter/othernuts/choline/


The TMAU low-choline diet is very much a personalized development based on individual needs. The important thing is to not think that a low choline diet means to eliminate choline all together.
IMPORTANT NOTE: Children and pregnant mothers should not decrease their choline consumption, and should consult with their physicians before modifying their diets.

Of course, this AI may not be (most probably is not) tolerated by some TMAU+ adult individuals without triggering odor symptoms. Nonetheless, it is a goal to reach for, and each sufferer must stop short when symptoms are triggered. The TMAU low-choline diet is very much a personalized development based on individual needs. The important thing is to not think that a low choline diet means to eliminate choline all together, this is not a healthy choice.


FOOD GROUPS:
The pyramid food groups previously used as a guideline for a well-balanced diet has been replaced by the Right Sized Portion Plate. Please note that the food noted on the image are for persons who do not have a malodor condition, but the intent here is to show the food groups and portions of each that sufferers should strive to consume per meal, and note that fruits and vegetables should fill half of your plate.

Protein - Meat, poultry, or fish:
1 oz of poultry is usually the best choice. Only fresh water fish, such as Tilapia, is lower in choline content.
(See post, Three main protocols of TMAU diet, on TMA precursor and fish)

Consult with the USDA Database for the Choline Content of Common Foods, Release Two, chart starts on page 12, see Total Cho (total choline) column.  To find an item in the chart, do Ctrl+F and type in the name of the food.  If not found in the chart, type in the type of food, i.e., vegetable, fruit, etc. You can also find more information on nutrients provided by the USDA with this tool.


A low choline diet is innately a low protein diet by default. Nonetheless, if one is not a vegetarian, chicken and turkey should fill this quarter of the plate as opposed to red meats. See some tasty protein options below.

*Nuts are high in choline, but some people tolerate one teaspoon, or maybe even a tablespoon in some cases, of peanut butter a day (would make a nice peanut butter and jelly/jam sandwich).


Some tasty protein options:
  1. Spaghetti with ground turkey and small amount of beef (optional) in lots of tomato sauce. Adds little beef flavor if beef is used, but the amount of beef per serving would be small if cooked in a large pot.
  2. Breaded chicken breasts, dipping the thin cut chicken breast or chicken tenders in egg whites and bread crumbs or flour and fried in Canola oil. Can serve with pasta.
  3. Chicken fricassee with chopped potatoes and/or rice(white or with yellow coloring using a dash of Achote or Annato (bijol in Spanish). Can substitute chicken breast or chicken tenders for ground turkey or ground chicken. Chop potatoes into small cubes. Saute small amount of green and red peppers strips with very small amount of onion. Season chicken tenders cubed with lemon pepper and salt and cook until almost done. Add cubed potatoes until tender. Add 2 TB of tomato paste with 1/2 cup (or more as needed) of water to make sauce (not too much), or 1 to 2 can(s) of tomato sauce. If tolerated, 1/4 cup or less of red wine for flavor(optional). Cook long enough for sulfur in onion and wine to evaporate, and it's done. Cook rice on the side, can add yellow coloring to the rice (optional). Serve rice with sauteed chicken & potatoes.
  4. Chicken tempura. See recipe online.
  5. Tacos with the chicken fricassee with chopped up tomatoes and lettuce. Avoid hot (spicy) sauce because it has sulfurs.
Grains and High fiber foods, i.e., breads, cereals, pastas, : 1 slice of bread, 1 cup of breakfast cereal, or 1/2 cup of cooked rice, cereal, or pasta is considered a 1 oz equivalent from the grains group. Although high fiber foods are recommended for gastrointestinal health, we do need to keep in mind that whole grain barley or rye and cooked brown rice are richer in choline, but if you limit most of your choline intake to these foods, then you might be able to have some of these once in a while, or even daily. So, if you have IBS and need to eat more fiber, you do need to observe your odor symptoms while adding high fiber - less processed grains, while attempting to consume as much fiber in your diet as possible. Again, not every sufferer's FMO3 enzymes function the same; and even in one individual, the enzyme function may fluctuate depending on hormonal changes, lifestyle, stress, etc.

Dairy: Milk as tolerated. 1 cup of yogurt. Non-odorous cheeses, such as crumbly white cheeses like Greek Feta are best, depending on individual reactions. Some people have learned to live without dairy foods, and others love their cheese on bread, and milk or cream in their coffee. We see on choline food content charts that milk and coffee are higher in choline content. Yet, there are alot of people who feel deprived without them, and usually succumb to the temptation to consume them. Some sufferers are pleasantly surprised to see that they can have one cup a day, maybe for breakfast? Others are not as lucky. Again, this diet is individualized according to personal symptoms. Each person needs to test his or her malodor "threshhold" as much as possible to be able to eat a healthy and satisfying diet. If one is not satisfied with the diet, one will inevitably break it, and usually break it badly. The aim is to set a lifestyle of successful malodor management and a well balanced diet, as much as possible.

Fruits and Vegetables: 1 cup raw or cooked vegetable, such as carrots, celery, tomatoes, sweet potato, squash zucchini including skin, sauerkraut, radishes, cucumber, green and red peppers. (See USDA Chart pages 21&22)

Some tasty fruits and vegetable meals and snack options:
  1. Vegetable tempura with carrots, squash, and zuccini. See recipe.
  2. Raw fruits listed on page 18 of USDA Chart with sherbert (or very little ice-cream as tolerated, preferably fat free and no sugar, see page 31 of USDA Chart)
  3. Homemade vegetable and fruit juice (need fruit juicer):
    Fruits: pineapple, strawberries, apples, bananas, blackberries, blueberries, cranberries, guava, kiwi, lime juice, orange, peaches, pears - preferably all raw; can be added to vegetable juicer with celery and carrots.
    However, juices have less fiber than the raw or slightly cooked vegetables and fruits.

"Simply Delicious: A low Choline Recipe Book."

by Sonya McClinton


Click here for Amazon US
Click here for Amazon UK






AVOID:
Treatment of manifestations recommended by NIH: dietary restriction of: (1) trimethylamine (present in milk obtained from wheat-fed cows) and its precursors including choline (present in eggs, liver, kidney, peas, beans, peanuts, soya products, and brassicas [Brussels sprouts, broccoli, cabbage, cauliflower]), lecithin and lecithin-containing fish oil supplements, (2) trimethylamine N-oxide (present in seafood [fish, cephalopods, and crustaceans]), (3) inhibitors of FMO3 enzyme activity such as indoles (found in brassicas)…
  1. Organ meats from any animal, including liver, kidneys, brains, etc.,
  2. Legumens
  3. Soy products
  4. Egg yolk or whole egg. (OK to eat egg whites, but keep in mind contains sulfur, which might not be a problem for some).

María

María de la Torre
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44 comments:

Anonymous said...

would be good to see examples of daily meals . I've seen many complain of getting under 2500 calories on diet .

Oct 6, 2012, 1:44:00 AM
Maria de la Torre said...

I know it would be expensive in most cases, but the ideal thing would be for individual sufferers to consult with a dietitian. I know there are sufferers who either have symptoms much more readily with a great deal of foods, and thus they eat less than 2500 calories, and there are other sufferers who select foods from the USDA Database list noted in this post that have caused them to put on some pounds, like lots of potatoes, pastas, and rice. I agree that it is challenging to try to eat a low choline, but also a healthy diet. To be honest, I don't think it's really possible, and that's where I think the 9 inch plate concept is helpful.

Oct 6, 2012, 1:51:00 AM
Anonymous said...

I have trouble smelling fishy if I eat fish,so even though I love fish I have stopped eating it. I also have trouble with other bad odors and have given up all things containing gluten and foods high in sulfur, although I am going to try green beans in limited quantities. I find that drinking coffee at all is very bad for causing a bad vaginal area odor. this is where most of the odor issues come from and sweaty crotch area. I think it helps to be a normal weight as excess weight will make you sweat more and therefore have more odor issues. I ate a large double cheeseburger one evening and the next morning my crotch area was very sweaty and definitely smelled fishy. I am sure I have some degree of this condition. It makes sense to not eat the foods high in choline, sulfur or gluten. I really think gluten and yeast and sugar make the condition worse. also it seems very helpful to have really good daily bowel movements as this gets all that rotting food out of the gut so the odorous stuff can't get into your system.

Apr 10, 2013, 2:29:00 AM
Anonymous said...

Potatoes should be avoided if you have TMAU. High choline content, as well. I was surprised you recommended it.

Apr 19, 2013, 4:58:00 AM
Maria de la Torre said...

Perhaps I’m missing something here. According to the USDA Database for Choline Content of Common Foods, http://www.nal.usda.gov/fnic/foodcomp/Data/Choline/Choln02.pdf, on page 23, they have listed nine different descriptions of potatoes, ranging from 11.0 to 24.0 mg of choline moiety/100 g of food. These descriptions include French fries, frozen, home prepared, mashed , red, flesh and skin, baked, etc.

I think that people forget that choline is an essential nutrient, and that even those with TMAU have some FMO3 function, as is noted in their TMAU test. I haven't heard of anyone have zero (0) level of TMAO.

It is unrealistic and unhealthy to completely eliminate choline from one’s diet. Unrealistic in the sense that your mind will make you crave choline rich foods if you deprive yourself completely from it, and thus you will be more likely to binge on it one day. It is healthier to consume low levels of choline, and then TO do cardiovascular exercise to help your body’s cleansing organs remove TMA from your body, IF low levels of choline produce odor, which it probably doesn't.

There is a very good chance that if you are on a low choline diet and follow the protocol, that either your enzyme would be extremely deficient, or that you have other causes of odor as well. I doubt very much that low amounts of potatoes will produce intense odor, even in TMAU positive patients, based on the choline content of this food. If it does in your case, perhaps you might want to look at other possibilities, such as having other types of odor conditions, or perhaps there are other foods you are eating to be the culprit, while you blame it on potatoes.

Apr 19, 2013, 10:37:00 AM
Anonymous said...

I've recently started juicing and was dismayed to find that a juicing web site says cucumber juice is 7% choline! They were saying that like it's a good thing, the same for Pineapple juice. For me it's a disaster! I can't seem to eat anything that doesn't make me stink. I don't eat animals, so chicken etc is out for me. I refuse to eat white refined carbs as they are so unhealthy. Sometimes I just feel like giving up and eating whatever I want. I'm going to stink anyway :(

Aug 9, 2013, 8:23:00 AM
Maria de la Torre said...

If you look at the chart of choline content of foods made by the US Department of Agriculture, on pages 18 and 19, http://www.ars.usda.gov/SP2UserFiles/Place/12354500/Data/Choline/Choln02.pdf
you will see on column "Total Cho" (total choline) that the choline content of the juices and fruits listed is relatively low. Also, keep in mind that the Total Cho noted is per 100g of food.

Have your doctor done a glucose tolerance test for you? Persons with diabetes have odor as their sugar levels vary. I would consult with your doctor if this is not your case.

Aug 11, 2013, 7:39:00 AM
Anonymous said...

I suffer from bad breath, body odour, smelly discharge, gas, basically anything that my body can emit, smells terrible, I cant eat anything without passing gas. I floss and is smells like I've flossed the arse-crack of a dead rat. My relationships break up because the pungent fishy smell down there is just unbearable.

Right so, I do not know what is wrong with me - I am mortified, hopeless, feeling horrid, depressed, exhausted and don't want to die alone. I am a normal mid thirties woman with a great career, fit and healthy, wonderful friends and family and very aware of personal hygene.

Systemic Candida VS TMAU ???
The diets for each are quite different.

Is there a CLEAR test for each to see what is causing this bacterial war!!??

Sobbing :(

Sep 26, 2013, 10:49:00 AM
Anonymous said...

TMAU is a gas - take Gas Relief pill after each meals.

TMAU thrives in acid - take an acid reducer after each meals.

pay attention on the dose instructions for drugs.

I usually only each two meals a day. hopes this helps

Oct 3, 2013, 10:28:00 AM
Anonymous said...

Is there any vegetable that can be substitute for meat and animal products and that it can be good for tmau as well?

Jun 26, 2014, 5:46:00 PM
Anonymous said...

Is there anz food that can be substitute for meat and animal products and that is good for tmau as well?

Jun 26, 2014, 5:49:00 PM
Ann said...

I never had this problem until I started using Splenda. Then aspartame and saccharin made me smell like sewage also

Jul 16, 2014, 12:13:00 AM
Anonymous said...

Try eliminating sugar, carbs and stimulants such as coffee from your diet. Avoid dairy milk, try Hemp milk instead.

Detox and massage your liver area by skin brushing, check your mineral levels are not low take magnesium supplements (consult with your doctor first) and drink at least 2 litres of water per day.

Worked for me

Jul 26, 2014, 12:11:00 AM
Anonymous said...

I think i have symptoms of TMAU but alongwith that i have also lactose and fructose intolerance which also eliminates milk and many fruits from the diet.I like to walk on hilly areas so i fell much tired after that, blury vision at night.my eyesight is perfect but i fell something floating in air.

Aug 30, 2014, 1:09:00 AM
Anonymousmafl said...

"Is there a CLEAR test for each to see what is causing this bacterial war!!??" Id really like to know this as well. I'm also in my early 30s. Female with really bad bo issues. Not sure what its from but just need to get rid of it. It effects every aspect of my life. Very isolated. Hard to hold jobs. Terrible. Embarrassing. Depressing.

Oct 23, 2014, 12:42:00 PM
Maria de la Torre said...

Hi anonymous,
I'm sorry you're going through this hardship due to your condition. There are a few things you can do if you haven't done so yet, such as to try to get one or more diagnoses in case you have more than one cause of odor.

1. See a gynecologist
2. See a gastroenterologist
3. See a dentist
4. Do a urine TMAU Test to see if you have Primary or Secondary TMAU, if for no other reason, to rule it out. The MEBO TMAU Test cost is $150 plus round trip shipping cost. There will be no additional cost after this is paid in full. If you would like an exact quote of the shipping cost, please fill out the online Requisition Form, http://www.meboresearch.org/tmautest-mebo.html

Good luck to you.

Oct 23, 2014, 9:34:00 PM
Anonymous said...

People with this condition seem so misinformed. If you actually have tmau, eatting something does not produce any oder until it reaches the intestines and even then the intestines are also occupied with 2-3 other meals so to think one ingredient like aspartame is your problem is an unreasonable assumption especially when diet cola is deemed one of the lowest choline content out there. Also some of this blogs information is off because coffee as well as milk have low/very low choline. Eat egg whites for protein and go wild with fruits and carbs(always checking their choline content on the gov database) and these things are doable. Sure if you make excuses and dont take steps to educate yourself this can feel like being doomed. Do some research and stop perpetuating your own misfortune. Only once you are smell free and people are not having reactions can you start reintroducing food groups to test your individual tolerances. You cant half way follow this diet and assume youll be able to figure out what foods are the problem from there.

Mar 21, 2015, 7:59:00 AM
Anonymous said...

My Husband and I live in Charlotte, NC does anyone know of a Doctor that my Husband can see? He has been having a problem with TMAU for a couple of years now and is miserable. I don't know how to help him. He has tried so many things to have nothing work. Please, Help

Jul 6, 2015, 6:48:00 AM
Unknown said...

If you go to a doctor, they probably wont be aware of the specifics of TMAU so go to them with the information about TMAU from a reputable website and ask them to arrange a test or to refer you to a specialist. Personally I have done a combination of things to reduce TMAU. 1. Taking charcoal tablets after meals 2. Cutting trigger foods, as soon as I realised I had TMAU I cut out eggs, fish, legumes, beans etc, after I while I realised that dairy products were a big problem so I have now cut out all yoghurt and most milk. 3. Eating tactics - Work is the biggest problem because it means going at least 8 hours without a chance to wash therefore I avoid eating before work and avoid choline at work but am more relaxed in the evenings - also stress definitely increases issues. Good Luck!

Aug 5, 2015, 9:26:00 AM
Anonymous said...

Anyone knows what source of protein to eat that is low in choline?
Fiber is also another problem. Since I cut wheat bread I don't get enough fiber, which should be 28g minimum.
Thanks!

Oct 4, 2015, 3:32:00 PM
Unknown said...

thanks for sharing this

Diet chart | Balanced diet chart | diet plan

Dec 9, 2015, 8:25:00 AM
Anonymous said...

Regarding the TMAU urine test: is that something my doctor will do, or do I go somewhere else for the test? Can you be specific? I am in California.

Jul 10, 2016, 4:18:00 PM
Unknown said...

For those that need fiber, I'd recommend psyllium husk.

For the odor, try chlorophyll along with activated charcoal (recommend dosage on labels). Also use a soap with a pH between 5.5 and 6.5. Dove is an example. Take vitamin B2 as a supplement with meals.

If you believe you're also dealing with intestinal candida overgrowth, try taking virgin coconut oil for at least two to four weeks. I used 2 tablespoons morning and night. During that period you'll also want to adhere to a strict candida diet. Focus less on TMAU diets until you get your candida under control. Then you can start incorporating certain fruits back into your diet and adhere to a TMAU diet instead, avoiding meat, soy, legumes, nuts, dairy, etc. and eating a lot of fruits and vegetables. Know that you're going to have to eat some foods containing choline. Your body needs it and its unreasonable to expect yourself to avoid it completely.

The most important part of this is your health. Both physical and mental. Make sure you see a therapist if you're suffering from anxiety or depression. Make sure you're seeing a gastroenterologist if you're having digestive issues. If you have the means, loop in a dietician as well.

It may seem impossible to live a happy life with this condition but it truly is achievable with the right approach and support. Know that you're not alone and there are people that can help you with this battle. This condition has not been well known or studied. In time, there could even be a cure.

Aug 7, 2016, 5:23:00 PM
Unknown said...

For those that need fiber, I'd recommend psyllium husk.

For the odor, try chlorophyll along with activated charcoal (recommend dosage on labels). Also use a soap with a pH between 5.5 and 6.5. Dove is an example. Take vitamin B2 as a supplement with meals.

If you believe you're also dealing with intestinal candida overgrowth, try taking virgin coconut oil for at least two to four weeks. I used 2 tablespoons morning and night. During that period you'll also want to adhere to a strict candida diet. Focus less on TMAU diets until you get your candida under control. Then you can start incorporating certain fruits back into your diet and adhere to a TMAU diet instead, avoiding meat, soy, legumes, nuts, dairy, etc. and eating a lot of fruits and vegetables. Know that you're going to have to eat some foods containing choline. Your body needs it and its unreasonable to expect yourself to avoid it completely.

The most important part of this is your health. Both physical and mental. Make sure you see a therapist if you're suffering from anxiety or depression. Make sure you're seeing a gastroenterologist if you're having digestive issues. If you have the means, loop in a dietician as well.

It may seem impossible to live a happy life with this condition but it truly is achievable with the right approach and support. Know that you're not alone and there are people that can help you with this battle. This condition has not been well known or studied. In time, there could even be a cure.

Aug 7, 2016, 5:24:00 PM
Maria de la Torre said...

As far as I know, the test is only performed by the Colorado University, Denver lab through various administrators of the test. They charge approximately $400 for the urine test and approximately $600 for DNA sequencing. Your doctor would need to write the prescription for the test, and check to see if your insurance will cover it. If it does not, you will be responsible for it. The urine test only checks for Primary TMAU, not Secondary TMAU. Here's the info:

TMAU urine and DNA testing. Hospital where TMAU was first documented in 1970.
Website pdf : http://www.childrenscolorado.org/File%20Library/DenverGeneticsLab/TMAu_testing_urine--v20150908-.pdf

The MEBO test is only $150 plus round trip shipping, and no doctor's orders are needed because it is a research lab. However, then your insurance will not cover it. The MEBO test checks for both, Primary and Secondary TMAU. If you are interested in doing the MEBO urine test, please fill out the Requisition Form.
http://meboresearch.limeask.com/48699/lang-en

Aug 8, 2016, 10:47:00 PM
Maria de la Torre said...

In both cases, the test samples are sent via air currier.

Aug 8, 2016, 10:48:00 PM
wonder s said...

Hi,I think I have TMAU,I suffer from terrible body odor that causes me and the people around me to sneeze,this makes my life very difficult as I had to quit my job due o complains from workmate.am now jobless and its very hard for me to make ends meet.i cant look for another job as iam afraid I wont keep it due to the odor,everything I eat seems to trigger the odor So I hardly eat causing a major weight loss.the worst part is that its very hard to get help in this side of the world where TMAU is unheard of.i tried telling my doctor that I thought some of the food I was taking was causing me the odor and he thought I was nuts and gave me anti depressants 😢I have become a social outcast as I dont go to social places and I have no eans of survival for me and my kids,life is so hard am gong suicidal😢 please help

Sep 11, 2016, 7:12:00 AM
Maria de la Torre said...

I am sorry that you have hit a dead end in your pursuit of controlling your symptoms to be able to work and have a social life.

I know that it is particularly difficult in countries where TMAU is unheard of by all medical professionals. What some sufferers who have volunteered dedicated themselves to raising awareness in the medical field using the MEBO Banner have done is to contact the College of Medicine in their respective countries with articles written by professionals on the topic. If you are interested in doing this, please contact me at maria.delatorre@meboresearch.org. We have copies of this information in English, Spanish, and Portuguese, and most physicians in the College of Medicine understand one of these languages.

Sep 11, 2016, 12:17:00 PM
leaktattle said...

Nice to read your blog. No woman has a clean time at some stage in her monthly intervals. But, 1/2 the troubles we face for the duration of our periods can be solved

Sep 17, 2016, 7:26:00 AM
Anonymous said...

I am not sure if you have seen this post from another site by Hopefulbbbo. It is a regimen she follows. Says there is no odor. I tried it and my odor was significantly reduced. I have been doing this now about 5 days and as long as I do the regimen I am odor free with one shower a day and my limited diet, mostly vegan. Still looking for something to sub for beans. I do eat some limited dairy with no odor. When I first started, I didnt have the maca but still seemed little to no odor. Also, after 2 days I added kambucha tea bags by Yogi. seems to be working for me. check out the link. the post is about two/three or four down. Hope it works for you.
https://www.rareconnect.org/en/community/trimethylaminuria/article/bb-bo-cure

May 7, 2017, 4:40:00 PM
Anonymous said...

Go to a gynecologist ask him to do the tmau test which is a urine test it gets sent off and the test tests the tricylphalimine levels if they are to high then you have tmau (fish malodor syndrome) which is a genetic rare metabolic disorder caused by a faulty gene that chemical is what causes the odor because your body cant break it doen so the best place to start is find a gp that isnt an idiot find a gynecologist and a dietician that specializes in tmau if you test positive to it

Jun 4, 2017, 2:55:00 AM
Anonymous said...

A urine test see a gynecologist

Jun 4, 2017, 3:51:00 AM
Anonymous said...

I have self diagnosed and pretty sure I have TMAU, but would like to get testing done. I have the links but does anyone know if I need to come off the supplements for testing to be accurate? I take activated charcoal and copper chlorophyll internal deodorant.

Oct 23, 2018, 10:24:00 AM
blogcontributor2 said...

Yes it would be best to stop the supplements, so you don't get a false lower result.

Oct 23, 2018, 11:24:00 AM
Anonymous said...

Is there a list of doctors in the NY/NJ area who specialize in TMAU. I haven't been able to find such a list. Thank you for your help,

Nov 10, 2018, 9:30:00 AM
Anonymous said...

The Mount Sinai Division of Medical Genetics (think thats the name but google it) in NYC does TMAU testing.

Nov 17, 2018, 10:04:00 PM
Anonymous said...

Is there a place in Chicago that tests for this? Has anyone been tested for this in the city? Any help or feedback is appreciated thanks.

Apr 30, 2019, 4:31:00 PM
Unknown said...

iS there a place in Canada that does TMAU testing

Aug 10, 2019, 9:15:00 AM
Unknown said...

I have an appt at Mayo clinic in Rochester, MN with an endocrinologist. After many months I found a doctor that agreed with me and suggested I go to mayo where they often handle rare diseases. I made the appt myself, without a referral. I live in st Paul and take public transit but there's a bus that makes the long trip 2.5 hours from the airport to the clinic. I've been nervous about taking longer trips in enclosed public spaces for awhile but I'm more than okay with it now. I just want a definitive answer after months of not knowing for sure if it's tmau. I got sick a year ago after a round of antibiotics and was already getting kinda smelly from the birth control I was on, the progestin from Mirena iud has a high androgen index (lots of oily sweating and lower estrogen effects Fmo3 activity) and then a few hours after antibiotics I reeked horribly. It's even worse before and during my period when I experience a drop in hormones. I'm hoping i can finally get the diagnosis, and be referred to a dietician and maybe control the smell while I get hold of my hormones with spironolactone and balance my gut bacteria. It's process but of course I have no way of ignoring this. I can smell it and some days it drives me crazy that my nose is burning from a smell that doesn't wash away. Its late, I'm ramble-y but folks, try Mayo clinic if you cannot find a GP that will take you seriously. I requested an appt last Friday, got a call an hour later and they had appts as soon as the following Tuesday! I'm seeing them later since I'll need to coordinate work, transportation, and possibly a hotel stay.

Nov 4, 2019, 1:54:00 AM
Unknown said...

Eu fiz o teste de urina aqui onde moro no Brasil, deu taxas de tmao e tma normais , negativo pra tmau. Estou perdida não sei o que fazer, o odor existe,as pessoas reagem muito a mim, alguém já fez o teste e deu negativo pra tmau?

Jun 4, 2020, 9:14:00 PM
Anonymous said...

I've been told (since I was a teenager) that I stink, and I've been mocked for it well into adulthood. But when I was on the keto diet not to long ago and eating mostly meat, dairy and eggs, I smelled like rotten eggs the majority of the time. It was terrible, worse than it had ever been. For the first time ever I actually smelled myself 100% of the time and even began to feel sick at how terrible it was.

Now that I've gone vegan, the symptoms (odor) have decreased maybe 90%. I've cut out all meat, dairy and eggs but still eat beans and nuts. Since beans tend to have a higher level of choline, I imagine that if I were to cut that out, too, the symptoms would disappear completely. The problem is that I also want to be healthy, and don't want to restrict to the point where I'm not getting the proper nutrients or protein.

Anyway, just wanted to put out there that veganism worked for me. Not 100% but a great deal.

Jun 29, 2020, 11:47:00 PM
Unknown said...

Imma try this I'm so tired of this TAMU

Aug 5, 2020, 8:50:00 AM
Anonymous said...

Tmau sucks! I think I might have tmau2. I recommend reading Prof. Arnold Ehret's mucusless-diet healing system. I’ve been reading it so far and for those with tmau2 it might just be a gut microbiome problem. I recommend everyone struggling with this problem to read that book, it’s online you can find it in pdf format for free. I am starting on my healing journey and hope you do too. Also look up Raw Maraby’s YouTube channel. Good luck to everyone and keep your head up

Oct 10, 2020, 3:11:00 PM
Unknown said...

Are there any resources on the choline, sulfur, etc. content of gluten free products like breads and pastas?

I still am waiting to see my doctor about all this, but I'm trying different things out in the meantime. I am sensitive to wheat, so I use a lot of gluten free products. But I know they are made out of a wide variety of different grains, so it's hard to estimate how much is in them. And I am trying to be very careful to see if any of this helps me. I don't want to give up pastas and breads entirely and have to replace the calories with something else, but I also don't want to go over my choline budget if that is my problem.

Nov 14, 2020, 9:40:00 PM
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