Rocky Mount, North Carolina Meetup

There will be a meetup in the City of Rocky Mount, North Carolina on:

DATE/TIME: Sunday June 8, 2014 at 2:00pm EST.

LOCATION:
Starbucks at Target (off 301 near the Golden East Mall)
731 Sutters Creek Blvd.
Rocky Mount, NC 27804
252-443-1195

Please send an email to Glenna.gonzalez@yahoo.com with questions.

The last meetup at Rocky Mount held on September 2013 was a success. Everyone had a very good time. You are welcome to join the 2014 meetup!

I always enjoy looking up information about the city where a meetup will be held, and I found this YouTube video.

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A Public Charity

A EURORDIS and NORD Member Organization 

Protein and Fiber in Low Choline Diet

PLEASE READ THE FOLLOWING POSTS
On this blog and on RareConnect

• How do we get Protein and Fiber?
  (RareConnect)
• What to eat on a TMAU Low-Choline Diet
• Three Main Protocols of TMAU Diet
• Starvation Diet and Odor

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

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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)
El Blog de MEBO (español)

MEBO Brasil - Blog (Portuguese)

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at no extra cost to you.
MEBO gets small commission from Amazon.

Please use your credit card to make your donation to MEBO.

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A EURORDIS and NORD Member Organization

Current wait time for MEBO TMAU Test Results

It is frequently difficult for sufferers to decide to test for trimethylaminuria,(trimethylamine in urine test.)

Questions that frequently come to mind are,

1. How do I ask my doctor for the test (where available)? What do I do if he or she doesn't take me seriously and won't order the test for me if required by a National Health Service or private medical insurance?
2. Is testing going to be expensive?
3. Is the testing process very complex, and consequently does it have a greater possibility for error?
4. The urine TMAU Test requires a choline challenge to increase my odor symptoms to their maximum. Do I really want to subject myself to this? How long will it take for the odor to decrease back to at least my normal, or for me to ever get rid of it altogether?
5. How accurate is the urine test?
6. Once the decision is made and the sufferers submits urine samples, the most important question becomes, "How long will it take for me to get my results?"

These are all very valid questions and concerns, and there are many possible answers depending on what country one lives in and how cost effective it is for the lab to analyze a batch of samples. It is potentially very costly for the lab to stop whatever other work performed by the instrument to then use it to analyze our urine samples. Therefore, in an effort to keep the price of testing down for sufferers and to address the cost effectiveness of the test to sufferers and lab, MEBO and the lab arrived at an agreement for tests to be performed when there are enough samples in a batch to to merit setting up the instrument to analysis the samples. For this reason, MEBO has agreed to send them 15 to 20 samples at a time in one batch, so they can take advantage of any opportunity within a month's period to send MEBO back the results.

Below is a brief time table of Batches 1 through 10.

BATCH #1: (40 SAMPLES) were sent to the lab on July 18, 2012, the lab received it the following day, and MEBO received the results on August 22nd.

BATCH #2: (24 SAMPLES) were sent to the lab on September 14, 2012, received the following day, and MEBO received the results on October 17th.

BATCH #3: (22 SAMPLES) were sent to the lab on November 15, 2012, received the following day, and MEBO received the results on December 5th.

BATCH #4: (15 SAMPLES) were sent to the lab on February 24, 2013, received the following day, and MEBO received the results on March 4th.

BATCH #5: (20 SAMPLES) were sent to the lab on March 28, 2013, received the following day, and MEBO received the results on April 24th.

BATCH #6: (20 SAMPLES) were sent to the lab on June 3, 2013, received the following day, and MEBO received the results on June 26th.

BATCH #7: (16 SAMPLES) were sent to the lab on September 24, 2013, received the following day, and MEBO received the results on October 29th.

BATCH #8: (15 SAMPLES) were sent to the lab on January 13, 2014, received the following day, and MEBO received the results on January 31st.*

*Due to the Arctic blast that pushed subzero temperatures into the Midwest and Eastern US in December 2014 and January 2014, UPS warned of shipment delays due to interrupted service, so MEBO delayed in shipping the kits to the lab to protect samples.

BATCH #9: (15 SAMPLES) were sent to the lab on March 20, 2014, received by the lab the following day, and MEBO received the results on April 23rd.

A lab in Brazil, DLE-Medicina Laboratorial, has joined the MEBO Urine TMAU Test Program and commenced testing on January 6, 2014. Once they collect a batch of samples, they will ship them to MEBO in Miami, thus expediting the creation of the 15 to 20 samples required for MEBO to ship batches to the lab. DLE also performs FMO3 genetic testing. This is the first South American lab that we have found that will carry out TMAU testing.

BATCH #10:MEBO has received 14 samples since March 21st, including the 7 samples sent by the lab in Rio de Janeiro, DLE. Hopefully, we will receive at least one more set of samples next week so that the batch can be shipped to the lab on Thursday, May 15th to be received by the lab on Friday, May 16th.

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)
El Blog de MEBO (español)

MEBO Brasil - Blog (Portuguese)

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SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Please use your credit card to make your donation to MEBO.

Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner