diet

general questions and discussions

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diet

Postby alphablues » Mon Jul 13, 2009 3:37 pm

does anyone know if it's possible to eat either ready break or porridge without any undue side effects i am struggling with what to have for breakfast.
And does anyone have any good body washes which i could try ,i use johnsons body wash which is not working for me anymore,also does anyone eat white bread without any unpleasant side effects.
many thanks
alpha blues
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Re: diet

Postby bigvern » Tue Jul 14, 2009 6:56 am

hi alaphablues,

avoid porridge and ready break as they conatin wholegrain rolled oats which my dietician said contains a relatively high amount of choline, she recommended kellogs cornflakes and skimmed milk. Sad I know but i miss porridge so I put the cornflakes in a microwave to get them into a mush - everyone looks at me odd :shock:

On the subject of bread you are better off with plain white bread rather then brown or wholegrain as the choline content is lower. Its difficult I know and you really need to try and speak to a dietician as it can be confusing.

I have been using the pdf from the web links, a lot of the stuff doesn't match exactly but it does give a good indication of the foods high in choline
http://www.nal.usda.gov/fnic/foodcomp/D ... holn02.pdf

Have you seen a Dr or been diagnosed ??, I have heard that low PH body washes may help mild symptoms but not used any myself as it comes from the inside out so my personal opinion is that in my case the boddy washes wuld be of limited uses - but thats only my opinion. Its almost impossible for me to knwo what works as I cant detect the odour on myself and you can't rely on others to tell you as they are often as embarassed as you.
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Re: diet

Postby admin » Tue Jul 14, 2009 7:49 pm

A warm welcome to the forums alphablues,

I am trying to get a low choline meal plan posted on this website for download. It was formulated by specialist dieticians and I need their permission before posting.

Diet need to be carefully managed and monitored and for that reason I would recommend speaking personally to a dietician, once diagnosed with tmau you should be able to get referred to dietician by your GP

In the meantime white bread is the option to go for rather than brown or wholemeal; I personally eat English muffins which are reasonably low in choline. Most fruit is good (apart from bananas and melon)

I gave up trying body washes – nothing worked for me from that angle but again everyone is different and we all need to try and see what works for us. I would agree with big vern that lower ph body washes are the best ones to try

I’ll keep everyone posted on the Meal Plan...

Speak soon...
admin
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Re: diet

Postby alphablues » Wed Jul 15, 2009 1:14 pm

thanks for your reply, i was diagnosed about the year 2000. i ended up going over to the USA to be diagnosed simply because i wasn't happy about the test i had done over here. i was diagnosed by dr george preti at the monell chemical senses center . i also attended a workshop for tmau back in 2002 in the USA which was very daunting because after 100 years as it seems to me i was surrounded by tmau sufferers and women outnumbered the men i barely counted as many men on one hand. when i came back from the USA i saw a consultant at st georges hospital but my consultant wanted samples of urine and blood from my parents because they were doing a study at the time,well i confessed to my father my disorder ,well as soon i mentioned urine and blood samples i was told what good will that do, i got the same identical response from my mother, i do know for a fact that if i had been diagnosed with something like cancer the response would be different.my parents have something to hide yet my father has started taunting me about my disorder when we have cross words. i suffer from depression mainly because of tmau i've seen therapists etc but i still have tmau, it seems my parents don't like the depression which affects me , but as i see it the way they avoid the issue of why they won't help me with samples which my consultant wanted is a issue to me.
I am waiting for a referral from dr lachmann , just so that i can try antibiotic treatment, i 've done all this years ago but i have to go through it all over again as my consultant retired.As for the diet issue i have 3 diet sheets that i received 2 from over here plus the USA so the confusion with the cereal for breakfast stems from that.
The thing about tmau is the isolation and the social embarrasement to deal with.

once again many thanks

alpha blues.
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Re: diet

Postby alphablues » Wed Jul 15, 2009 1:33 pm

Many thanks for your reply,
regarding the diet issue i eat alot of melon with the green skin as it works for my skin etc , should i avoid this now?
i feel like i need to try antibiotic treatment again but i find metronisadole hard going i need something on a long term bases like 3 months or so.

regards
alpha blues.
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Re: diet

Postby bigvern » Thu Jul 16, 2009 8:43 am

I think it shows how devastating trimethylaminuria can be by the fact you went to the USA to get diagnosed. I was also considering going to the same clinic but luckily got diagnosed over here. I have suffered from depression as a result of the TMAU though feeling much better now. My own GP is ok with prescribing be with antibiotics every couple of months, if nothing else this gives me a chance to relax the diet a bit and gives some physiological comfort in that I am confident the TMAU smell will go whilst taking tha antibiotics.

Was the workshop in the USA useful?

I wouldn’t personally avoid any foods I looked but you can cut down if they are known to be high in choline.
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Re: diet

Postby smelly » Tue Jul 27, 2010 10:09 pm

bigvern,

the table of food values you posted the link to....is it the TOTAL CHOLINE column we look at?
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