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MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
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"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
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Denver TMAU Test Lab survey click here
click to Read more/less

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
Showing posts with label TMAU management protocol. Show all posts
Showing posts with label TMAU management protocol. Show all posts

Tuesday, April 24, 2018

Danny Kunz: Secondary TMAU, TMA, & fish smell

The research in the last decade assumed a kind of wrong type of bacteria in the gut, which would produce large amounts of TMA just by introducing them into the intestinal tract. This assumption seems to be incorrect.
Since TMAU was discovered in the 1990s, it was assumed that there was a bacterial overgrowth in the gut that produced excess amount of the odorous chemical compound, trimethylamine (TMA), and thus, overwhelmed a deficient FMO3 metabolic enzyme in the case of Primary TMAU, or even overwhelmed a well-functioning FMO3 metabolic enzyme, in the case of Secondary TMAU. It was well understood by these scientists that this was only an assumption, since research funding had not been provided to identify which bacteria inhabited the human gut that would produce excess TMA. For this reason, a course of antibiotic treatment is recommended in the well-referenced TMAU odor-management protocol.

Historically, all research investment into TMA producing bacteria had been made in the fishing industry to determine the freshness of the fish, since it's more lucrative than investing in human research whose lives are devastated with TMAU.
In 2017, as a result of the gut microbiome studies the MEBO community has donated to both Danny Kunz and his Citizen Research Group in Germany and MEBO's Scientific Director, Irene Gabashvili, PhD., the data collected suggests that the elevated levels of TMA is not due to a bacterial overgrowth.  Irene's perspective will be posted at a later date in this blog.

Danny Kunz's observations suggest, "It is very likely that a permanent malabsorption of choline and betaine is the cause of the altered bacterial metabolism activity."


Trimethylamine (TMA) and the smell of fish
April 11, 2017

It is very likely that a permanent malabsorption of choline and betaine is the cause of the altered bacterial metabolism activity.
The typical smell of (dead) fish is based on a chemical compound called trimethylamine (TMA)...

The second type [of TMAU] is different. Patients with the type 2 pattern show an overload of the FMO3 enzyme caused by a largely increased TMA synthesis in the small intestinal tract.

The research in the last decade assumed a kind of wrong type of bacteria in the gut, which would produce large amounts of TMA just by introducing them into the intestinal tract.

This assumption seems to be incorrect.

Today’s view shifts currently. It is very likely that a permanent malabsorption of choline and betaine is the cause of the altered bacterial metabolism activity.
More interestingly most of the TMAU sufferers do have other dominant smell types than fishy. The most stated type of smell was a fecal smell.

In March 2009, MEBO interviewed Nigel Manning, Principal Clinical Scientist, Dept. Clinical Chemistry, Sheffield Children's Hospital, explained to us that more research had been carried out and papers published on trimethylamine (chemical with dead fish odor) and 'fish-spoiling' than on TMA in humans. Historically, all research investment into TMA producing bacteria had been made in the fishing industry to determine the freshness of the fish, since it's more lucrative than investing in human research whose lives are devastated with TMAU. When asked what bacteria is responsible for the production of trimethylamine in the gut, he replies,

Do we know what bacteria is responsible for gut Trimethylamine (TMA) production ?

NM: There are more than 400 species of bacteria in the colon but only a few described as TMA-producing. The fishing industry’s research microbiologists have published many papers on TMA and ‘fish-spoiling’ and cite species such as Vibrio harveyi, Vibrio fischeri, Photobacterium leiognathi and Shewanella baltica. The last of these is also know to generate hydrogen sulphide – or ‘ rotten egg’ gas. Whether these microbes are those responsible for human TMA production is a good question, but they may represent a small portion of the total.

For a description of these microorganisms, see a post in this blog, "Shewanella baltica and other TMA producing bacteria in the gut".


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
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Thursday, May 15, 2014

Protein and Fiber in Low Choline Diet




PLEASE READ THE FOLLOWING POSTS
On this blog and on RareConnect

Letter from Charlotte Ellerton
Specialist Dietetic Practitioner - Metabolics
For
RareConnect
(presented by Rob Pleticha)

It can definitely be a challenge to obtain adequate protein and fibre if you are reducing the choline content of your diet, as typically high protein foods do tend to contain more choline. Many wholegrain foods also contain more choline than refined carbohydrates (e.g. wholemeal or wholegrain bread contains more choline than white bread). Both protein and fibre are essential nutrients for health, so we do not advise cutting these out all together, but instead looking for alternatives and aiming to keep your diet as varied as possible.

If someone feels that eating meat exacerbates symptoms and is avoiding this on a regular basis, I would encourage the use of lower choline options such as egg whites - these are a fantastic source of protein, and very low in choline (it is the yolk of eggs which is choline-rich).
Meat products such as sausages contain less choline than meat itself (due to the addition of different ingredients), and poultry is lower in choline than red meat, so you may opt for chicken or turkey instead of beef or lamb. Of the patients we see, many are able to tolerate including meat in their diet, but perhaps less frequently or in smaller portions. According to the USDA database of choline content of many cheeses are actually very low when compared to other high protein foods, and cheese is an excellent source of protein.

Cereal products are also a source of protein - potatoes, bread, pasta and rice all contain some protein, so including these foods in your diet will provide protein. There are also a number of protein rich foods that contain moderate amounts of choline - beans, pulses and nuts for example, so small servings of these could be included in the diet in moderation.

Fibre can also be restricted if someone is following a low choline diet, but there are options - for example, brown rice is naturally low in choline and fibre-rich, as are sweet potatoes (eaten with skins) and porridge oats.

Many fruit and vegetables also contain minimal amounts of choline and are an excellent source of soluble fibre. Oat bran contains moderate amounts of choline, and could therefore be introduced gradually into the diet as an additional high-fibre source.

If you have concerns about your diet then my advice would be to seek more support from your dietitian, who can look at your diet specifically and make individual recommendations. There is not one diet that suits everyone - different people tolerate different amounts of choline, and it is important to eat as balanced and varied a diet as possible.. We also encourage people to relax the diet whenever they feel they can as it is exceptionally restrictive and following it strictly all the time can potentially result in malnutrition. Through a combination of diet, plus potentially use of antibiotics and also perhaps some of the other supplements (charcoal/copper chlorophyllin) we hope that individuals can feel more confident in managing their symptoms whilst also ensuring they are not compromising their health.

Thanks,

Charlotte

Charlotte Ellerton
Specialist Dietetic Practitioner - Metabolics

Translated from English into Spanish
by Maria de la Torre
for El Blog de MEBO


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
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Wednesday, December 18, 2013

Starvation Diet and Odor

Much too frequently, sufferers say that they are trying to stay on a very strict low choline diet, that they are losing a great deal of weight, and basically just following the TMAU odor-management protocol to an extreme degree. Nonetheless, they still claim to be emitting odor. After this attempt, some sufferers simply arrive at the conclusion that they fall into the group of TMAU+ sufferers for whom the protocol simply doesn't work.

I would like to invite these sufferers to examine one more aspect of the effects of the protocol they are following. Perhaps measuring the ketone levels in urine might give an indication of what could be going wrong.

Usually, when going on a very strict diet, sometimes referred to as a starvation and unhealthy diet, our bodies produce excess ketones, as an indication that it is using an alternative source of energy. Ketones are metabolic end-products of fatty acid metabolism. As Cass Nelson-Dooley, Clinical Consultant at Metametrix tells us in her March 24, 2009 interview for the MEBO Blog,


The smell of feces comes from short chain fatty acids (SCFAs) and bacteria like E. coli. All the SCFAs have strong smells. Butyric acid is an SCFA and it smells like feces and even like body odor. E .coli has more of a mousy odor.

So basically, by going on an unbalanced, extremely strict low choline diet, we may very well be decreasing our odorous TMA level in our blood, but then we are putting our fatty acid metabolism on overdrive, producing a feces-like odor...

precisely as a result of the very strict diet, some inadvertently create another metabolic condition that actually produces a different source of odor.
When this happens, ketone bodies show up in our urine, which is an indication that there is a strong probability that we are emit body and breath odor. One can purchase an inexpensive kit called Ketostix Reagent Strips for Urinalysis to test for elevated ketone levels. Basically, what you could do is dip one of the strips into your urine and see what color it turns into.

Unfortunately, sufferers believe that if they have TMAU, they have to starve themselves to keep TMA levels down. Sadly, precisely as a result of the very strict diet, some inadvertently create another metabolic condition that actually produces a different source of odor. Then, sufferers may feel that they don't have enough energy to do cardiovascular exercise because they don't eat enough food, so they fail to assist their cleansing organs like the lungs, kidneys and skin to clean the blood quickly and efficiently through the breath, perspiration and urine.

I recommend that sufferers read the post, "What to eat on a TMAU Low-Choline Diet," and to use Sonya McClinton's Simply Delicious: A Low Choline Recipe Book, as a tool to help develop a healthy diet. Her book includes seventy-five low choline recipes with the choline content and serving size listed for each. Categories include Light and Easy Breakfast Recipes, Simple Lunches, Delightful Dinners, Super Sides, and Decadent Desserts. These Delightful recipes prove that a diet low in choline does not have to be bland and tasteless. See links below to purchase your online/Kindle e-book. Sonya is a sufferer who wrote this recipe book to help other sufferers, and the cost is only $15.

Click here for Amazon US
Click here for Amazon UK







Note : If you don't have a kindle, if you click through the links above there is details on the right hand side of the page on how to download a free app to enable you to read the book on any device (PC, smartphone, ipad, tablet etc)   



The key is to not let one's body go into starvation mode and to avoid relying on fatty acid metabolism for energy for long periods of time. Relying solely on fatty acid metabolism for energy increases ketone levels (odorous metabolic end-products of fatty acid metabolism) in urine, and long term absence of protein, carbs, fruits and vegetables is harmful to the intestines. Ask any gastroenterologist. Instead, the goal is to eat a healthy diet by working closely with the rate of our own individual metabolism by spreading out a relatively low choline intake throughout the day to "work with" our FMO3.

If your TMAU metabolic pathway is deficient, then break up one well balanced meal into two or more smaller meals to allow your metabolic enzyme to "keep up" with the daily necessary food intake in order to prevent it form allowing free odorous chemicals into the bloodstream.

Please don't do strenuous cardiovascular exercise inf you have put your body into "starvation mode" as your home ketone test may indicate. Eat healthy with enough calories and choline to stay healthy and to give you enough energy to do cardiovascular exercise in an effort to assist your cleansing organs, in order to not have odor.

I hope I have explained this in simple terms so that it makes sense. Best of luck to all.

Translation into Spanish: Dieta de habre y olor corporal y halitosis

Amazon USA full linkhttp://www.amazon.com/gp/product/B00GIKLR6M/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00GIKLR6M&linkCode=as2&tag=mri0a-20

Amazon USA shortened linkhttp://goo.gl/iisvYR

Amazon UK full linkhttp://www.amazon.co.uk/gp/product/B00GIKLR6M/ref=as_li_ss_tl?ie=UTF8&camp=1634&creative=19450&creativeASIN=B00GIKLR6M&linkCode=as2&tag=mere0d-21

Amazon UK shortened linkhttp://goo.gl/mH2ZyN

Or you can go through the Amazon links on either sidebar



María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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Thursday, November 7, 2013

"Simply Delicious: A Low Choline Recipe Book"

"Simply Delicious: A low Choline Recipe Book."

by Sonya McClinton


Click here for Amazon US
Click here for Amazon UK







Note : If you don't have a kindle, if you click through the links above there is details on the right hand side of the page on how to download a free app to enable you to read the book on any device (PC, smartphone, ipad, tablet etc)   


I am proud to Introduce the "Simply Delicious: A Low Choline Recipe Book" created by our long-time and very dear friend, Sonya McClinton, who is a Trimethylaminuria sufferer. Sonya is a mom and wife who has a passion for cooking. After being diagnosed with TMAU in 2013, she began to search for a low choline recipe books. When Sonya discovered no such books exists, she decided to write her own in order to help others with this condition. It is the first and only low choline cookbook in the market. This is a much needed, must-have book for all TMAU sufferers who must live on a low choline diet to control TMAU symptoms.

The book includes seventy-five low choline recipes with the choline content and serving size listed for each.
Sonya wrote this book specifically for people who suffer with Trimethylaminuria, although it may also be helpful to others, since a link between choline consumption and heart disease is being researched implying the need for low choline diet for other medical conditions as well, as noted in the video below. This book contains easy to prepare, tasty recipes for people who cannot tolerate foods high in choline. The book includes seventy-five low choline recipes with the choline content and serving size listed for each. Categories include Light and Easy Breakfast Recipes, Simple Lunches, Delightful Dinners, Super Sides,and Decadent Desserts. These Delightful recipes prove that a diet low in choline does not have to be bland and tasteless.

What better time for this book to come out than now for the holiday season! It's the time of year when we share many special meals with family and friends, and up to now, sufferers of TMAU had to either give up the pleasures of good food or suffer the consequences of body/breath odor symptoms. Now, we have many other choices, thanks to Sonya's new book!

"Simply Delicious: A Low Choline Recipe Book" is an e-book for Kindle; however, it can still be read in PCs, smartphone or tablet with the free Kindle reading app. No Kindle device is required. Note : in order to make sure MEBO get commission on a purchase, we would be grateful if after downloading the app you then return here to go through one of our Amazon links to buy the book. 

Thanks, Sonya for contributing such valuable information to our community. In effect, you will be changing people's lives in a very special way - we can now enjoy the food we eat!

Note : By going through any of the Amazon links in this post or in the blog sidebar, MEBO Research charity should get a small commission of around 5% of the sale at no extra expense to the buyer. MEBO Research is not given any personal details of purchases by Amazon, other than that the item has been purchased. You can also give the links to others by email or on other sites.

If you wish MEBO Research to get a small  commission of any purchase of the book/ebook, you can go through these links or give them to others :

Amazon USA full linkhttp://www.amazon.com/gp/product/B00GIKLR6M/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00GIKLR6M&linkCode=as2&tag=mri1a20-20


Amazon UK full linkhttp://www.amazon.co.uk/gp/product/B00GIKLR6M/ref=as_li_ss_tl?ie=UTF8&camp=1634&creative=19450&creativeASIN=B00GIKLR6M&linkCode=as2&tag=mere0d-21

Amazon UK shortened linkhttp://goo.gl/mH2ZyN

Or you can go through the Amazon links on either sidebar

Related link: What to eat on a low choline diet


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María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)



A EURORDIS and NORD Member Organization 

Tuesday, November 6, 2012

Webinar Transcription of Dr. Lachmann's APPROACH OF TREATMENT AND FOLLOW-UP MONITORING FOR TMAU

3rd Webinar


rareconnect.org TMAU Webinar number 3

The above is the 3rd TMAU webinar held by Eurordis/rareconnect.org in association with TMAU advocates.

Guest speakers : Dr Robin Lachmann, and his unit dieticians Charlotte Ellerton and Heidi Chan

Transcript of part of the presentation:


APPROACH OF TREATMENT AND FOLLOW-UP
MONITORING FOR TRIMETHYLAMINURIA (TMAU)

It doesn’t really matter whether you have the genetic form of the disease or the acquired form of the disease or some other reason…, the management is the same. What we need to try to do to not cure the disease, but treat the disease and control the symptoms is reduce the amount of trimethylamine (TMA) in the body. (7:56 – 8: 16)

All the TMA that’s coming into the body is really coming from the gut...we need to try to reduce that amount of TMA coming into the body from the gut.
The body itself doesn’t make TMA at all in any measurable quantity. All the TMA that’s coming into the body is really coming from the gut in the first place. All the blood in the gut goes and collects it up and goes to the liver because the liver is the main metabolic organ. It’s responsible not just for detoxifying things, but also for extracting nutrients and most of the other important metabolic processes that go on. So all this TMA is normally efficiently delivered to the liver, where it is effectively turned into trimethyline-N-oxide (TMAO), and there is no problem. In trimethylaminuria (TMAU), at least some of it [TMA] will get through the liver and into the circulation into the rest of the body, and that’s what leads to symptoms. To treat those symptoms, we need to try to reduce that amount of TMA coming into the body from the gut. (9:08)

There is some TMA present in the diet itself in things like fish and shellfish, and it’s simply a matter of cutting those out of your diet. This would be simply straightforward, but unfortunately, it isn’t that easy. There are other source of TMA, and in fact, most of the TMA coming into the body from the gut isn’t coming in through the diet at all, it’s actually being made in the gut itself… The gut is full of billions and billions of bacteria, and we have billions of thousands different species of bacteria, and they are a very important part of our digestive system – we wouldn’t be able to digest our food without them.

Some of these normal colonic bacteria, and as part of their metabolism they take a chemical in the diet called choline and use it as part of their metabolism, and after consuming choline, the bacteria’s waste product is TMA, which the bacteria secretes back into the gut where it is taken up into the body. TMA is chemically very similar to ammonia. So it’s actually choline in the diet that is being acted upon by these bacteria that is probably, normally the largest source of TMA in the body.(11:24)


DIETARY TREATMENT
We don’t just need a diet that is low in TMA, fish and shellfish, but it also has to be low in choline, and it becomes much more restrictive. You can’t cut choline out of your diet all together…but you can cut foods that are high in choline to limit the amount of choline in your diet. (12:00)


GUT BACTERIA
if we knew exactly which bacteria they were, and we had tools that were specific enough to go in and specifically take those away and leave everything else behind, now that would be the ideal treatment.
Other forms of treatment…Addressing the issue of the bacteria in the gut that converts choline into trimethylamine. The gut…is full of bacteria and contains a mixture of bacteria and some of the bacteria are producing TMA from choline.

Now if we knew exactly which bacteria they were, and we had tools that were specific enough to go in and specifically take those away and leave everything else behind, now that would be the ideal treatment. But unfortunately, we are not in this position, for two reasons,
  1. Actually, we don’t know which bacteria are actually producing TMA. We know roughly which group of bacteria they are, they are called the anaerobes, but we don’t know exactly which ones, and that’s a big group of bacteria.
  2. Even if we did know which they were, we simply don’t have the tools that are specific enough to go in and take that one or two species of bacteria and leave all the rest behind.

ANTIBIOTICS
if the bacteria are exposed to antibiotics chronically, [the bacteria] will get resistant to them.
With antibiotics, we do have a much more broad spectrum that kill a wide range of bacteria. And so, what we can use is a group of antibiotics that are particularly active against these anaerobic bacteria, and we can give a course of antibiotics a couple of weeks, which are longer than most courses used to treat an ordinary infection, but we want to have as much effect as we can on the gut. And after two weeks of these antibiotics, there basically are fewer bacteria in the gut…and there would be less TMA produced in the gut.

We can’t keep people on antibiotics forever, many antibiotics wouldn’t be good for you in the long run, and in any case, the bacteria, if they are exposed to antibiotics chronically will get resistant to them. So after a course of antibiotics, we have to stop; and over time, unfortunately, bacteria will do what they do, which is that they will gradually, or even quite quickly, multiply and you’ll be right back where you started, with pretty much the same mix of bacteria you had before, producing a larger amount of choline.(16:04)


PROBIOTICS

after the antibiotics, when we have a gap in the gut flora,...those probiotics will quickly fill up that space that we’ve made.
We can intervene again to try to change the balance of the bacteria in the gut away from those that produce TMA with hopefully the bacteria that don’t. This is where the role of probiotics comes in, with probiotic bacteria preparations, like Bifidobacterium, acidopholus, lactobacillus, and we know that they don’t produce TMA, so at this point after the antibiotics, when we have a gap in the gut flora, we get people to actually take probiotics, and then those probiotics will quickly fill up that space that we’ve made. Once the glass [gut] is full again, there isn’t room for the other bacteria to divide so quickly with luck, we’ll be able to get a long-lasting alteration in the gut flora so that there are fewer of the TMA-producing bacteria. And if at the same time you are following a diet that is low in choline, you are feeding them less choline, and these two approaches, the diet and probiotics, will work together to bring down the levels of TMA, or at least we hope that they will. (17:12)

URINE TMAU TEST
we can also use it [the TMAU urine test] to monitor the response to treatment.
Now the advantage of having the urine test is that we can measure the TMA levels after a high choline load to show that they’ve got TMAU, but we can also use it to monitor the response to treatment. So when we see people on diet, we can again repeat the TMA levels to see where the levels are, and we can then try antibiotics again… And this is quite important because it actually turns out that there are a lot of people with TMAU are never aware of the odor themselves, and only under certain specific circumstances. This isn’t at all uncommon with odors, we get used to odors very quickly when we are exposed to them every day. So it’s very important to be able to give people feedback and prove to them that we are keeping levels down; and they should be more confident about what they do in their everyday life. (17:57)


OTHER APPROACHES TO TREATMENT

VITAMIN RIBOFLAVIN (VIT B2): Can certainly be very useful in some patients. Like nearly every enzyme in the body, FMO3 has a co-factor it needs to make them work efficiently, and many of these co-factors are vitamins, and that’s what vitamins do in the body… Now if you’ve got a normally functioning FMO3 enzyme, now there’s more than enough riboflavin in the everyday diet for it to work properly. But in TMAU, where we know that the enzymes for some reason are not working properly, there are some patients who respond very well to be given…about 100mg/day, which are the sort of tablets you can buy at health food stores. We recommend that everybody try these for a few weeks to see if it has any effect…(19:01)

CHARCOAL [ACTIVATED CHARCOAL] AND COPPER CHLOROPHILLIN
These don’t actually get absorbed into the body at all; they act solely within the gut. The idea is that they bind not just TMA, but a number of small volatile molecules within the gut, and stop them from being absorbed in the body. Now charcoal is something we use in the hospital emergency department when we see people come in having taken overdoses or poisoning because it will bind to all sorts of small molecules in the drug. So if you are on prescription meds, it’s very important to be careful with charcoal to make sure that it doesn’t interact with the drugs you are on, or that you take it when away from other tablets. (19:41)

Copper Chlorophillin is presumably acting in a similar manner. There is much scientific evidence behind either of these…with the idea that it will bind to smaller molecules that might give some kind of odor. (20:05)


Dr Robin Lachmann PhD FRCP
Consultant in Metabolic Medicine
Charles Dent Metabolic Unit
National Hospital for Neurology and Neurosurgery
London, England


A EURORDIS and
NORD Member Organization

Monday, October 29, 2012

TMAU webinar #3 : Dr Robin Lachmann and dieticians

rareconnect.org TMAU Webinar number 3

The above is the 3rd TMAU webinar held by Eurordis/rareconnect.org in association with TMAU advocates.

Guest speakers : Dr Robin Lachmann, and his unit dieticians Charlotte Ellerton and Heidi Chan



A EURORDIS and
NORD Member Organization

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


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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

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Friday, December 23, 2011

Trimethylaminuria Foundation website

In our efforts to unite our various body odor, halitosis, and bromhidrosis international websites and forums, with the hopes of providing each sufferer with valuable information, the Trimethylaminuria Foundation has authorized MEBO Research to provide our readers with the link to the

section of their website (See menubar above). As noted on the bottom of their website, "This site is still being developed, so please check back regularly for additional information and updates." Even so, it is already looking very professional had has valuable information for our community. It is a work in progress, and they are happy to share it with us now, but please keep in mind that more comprehensive information will be forthcoming.

We are all very grateful to this organization for it very valuable contribution to our community for many years.

María

halitosis research
María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

body odor petition
MEBO Research