Help needed please.

antibiotics, nullo etc. - what works for you?

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Help needed please.

Postby ash » Thu Jul 22, 2010 5:36 pm

Hi,

I wonder if anyone can help please. I haven't been diagnosed with Tmau, but I recently spoke to my doctor. She hadn't heard of it but she did ring a local hospital to see if I could have the urine test done there, they said I could. Then she spoke to someone in Sheffield ( I image it was Dr Lachman but I'm not sure), she was told that before sending a urine sample I should try a low choline diet to see if that helps control the symptoms and if that helps then I could have the urine test done.
I thought it was quite dangerous to have a low choline diet so assumed you wouldn't have to follow one until you were properly diagnosed as having Tmau.

The problem I have now is knowing what I should eat, I know a member on here posted some meal ideas but they were removed as I assume you are supposed have had advice from a dietician before you start a low choline diet.
They e-mailed my doctor some information that included advice on diet. It was the Genome.gov one which a member posted on here.

It mentions soy products does that mean all dairy products, like milk, cheese, butter, yogurts etc? Can I eat any bread or all different types of bread? I think I read that you shouldn't eat flour although that isn't mentioned on the information sheet I have. Can you eat biscuits, can you use oxo cubes, or tomato or lemon based sauces?

I'm sorry for all the questions I'm just confused about this and I hope someone can help please. Also if I do have Tmau how long should it be before I noticed an improvement with the odour, should it take weeks or months?
I know some people can't smell any odours on themselves but I can and I know how bad it is, I don't get fishy smells but other really bad smells.

I would be really grateful for any advice. Thank you

Ash
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Re: Help needed please.

Postby Lisa » Thu Jul 22, 2010 6:57 pm

Hi Ash, When I was tested for TMAU, I was told to do a choline load/challenge, which means eat the food your'e not s'posed to. I wouldnt do any cutting back on food yet, wait til you have the test. (Nigel Manning- Sheffield). If you do have it, there are lots of things you can do to manage it, one step at a time first tho, see if you have it. I started my first course of antibiotics on Monday, and have noticed a vast improvement in my urine, but everyone is different.
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Re: Help needed please.

Postby smelly » Sat Jul 24, 2010 5:41 pm

Hi ash,

Because you CAN smell yourself it is a really helpful thing to do to see if choline has anything to do with the odour.If it doesnt have any effect at all it could just as well be a urinary infection for example (Im sure i read in FACTS section of this website that this can give TMAU smell in urine?)

I think if you cut right back on your choline intake, for a week for example ,I cant imagine you are going to permanently damage your health. There are people who manage to live on a diet of chicken nuggets and turkey twizzlers so i think you will be safe for a week :lol: Then you could have a weekend eating really high levels of choline.

I think the warning about a low choline diet is because of long term effects from lack of certain nutrients over many years. If you wanted to know what to eat during your low choline experimental diet, maybe try

BREAKFAST: a store brand cornflakes (dont give Kel...s the money ha!) with full fat milk diluted 50:50 in water. Toast with a little butter (not marg because will prob have lecithin in?)

LUNCH: non-wholewheat pasta with mushrooms and courgettes etc fried in a little olive oil - not rapeseed oil (whatever that is! I think I read its bad) (no shop bought sauce on it unless you know it hasnt got E numbers, lecithin, soya etc in it - some organic ranges might be okay because tend to have less junk in them). if thats too bland for you, you could put in some tinned tomatoes/passata? I havent checked choline in basil but if its low you could tear up a few leaves to give it some flavour? i find that chopping up mushies, cherry tomatoes, peppers , courgettes etc, drizzling in olive oil and putting in oven 200oC for half an hour until they are soft and starting to go a little bit crispy makes them taste much better. make sure you use all the oil left over in the roast dish because i think this is where the taste/vitamins (and cancer fighting lycopene from tomatoes) may be so get that in the pasta as well.

DINNER: a stir fry with olive oil (dont know if other oils like avocado, sesame etc are high or low in choline) thinly sliced carrots, and yellow/red/green peppers, grated ginger (no garlic), and white rice. Again, if too bland for you, maybe you could add some chinese spices, but I have no idea of levels choline and chinese sauces can often have fish or soya in them? so for experiment you would want to avoid anything shop-bought?

i think generally fruit are low choline.

This is just a suggestion for a little experiment to see if it has an effect on odour, because I think this should be pretty low in choline/TMO/lecithin etc. Obviously you wouldnt just eat this kind of thing all the time if you were eating a low choline diet permanently, you would be in touch with a dietitian and adding as many other foods in as possible so you get as wide variety of nutrients as possible.

For high choline you could have

BREAKFAST: bacon, eggs, baked beans

LUNCH: 'chip shop' battered fishand chips with peas

DINNER: I would wager that at this point of the day you will be in NO doubt if you have TMAU and you CAN smell yourself! :lol:
Last edited by smelly on Sun Jul 25, 2010 2:56 pm, edited 1 time in total.
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Re: Help needed please.

Postby smelly » Sat Jul 24, 2010 5:51 pm

About SOYA: i think it can be hidden in a lot of things ,like soya flour used in rolls and bread. You are better off making your own bread or getting it from a health food /organic/ veggie type shop where they will list EVERYTHING thats in it.
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Re: Help needed please.

Postby smelly » Sat Jul 24, 2010 6:31 pm

ANYONE PLEASE jump in if i say anyhitng incorrect because Im just trying to help out here with my very limited 'knowledge'.... :?

For TMAU people: for anything you buy ready made from shop.....Avoid /eat less of anything that has on label .....lecithin(E322?) - maybe it might just be listed as emulsifier or stabilizer???? it will be in just about everything ready-made that gives that 'nice mouth feel' as they call it,like deserts but also some savoury meals and sauces,........ soya - is also hidden in a lot of stuff especially vegetarian stuff..............milk 'from wheat fed cows' i take that means milk, cheese, yoghurt etc

I just read the label on everything i buy ready made, or I make the meal from scratch so I know whats in it. Its a good thing for everyone TMAU or no TMAU to get a vegetarian cook book (or look up recipes online) and learn how to make proper food (vegetarians tend to know more about food and have greater interest in eating healthy i find! - you can always add a tiny bit of chicken or freshwater??? fish????). if you havent got the time or interest to learn how to cook, this is where the dietitian is even more useful because they will probably have lists of the sorts of ready made foods you mention and whether they are a good idea or not.

But just remember that for a LONG TERM diet you will need to be eating some of the stuff the info says you should 'avoid'. The trick is finding out how much YOUR body can tolerate versus getting enough to stay healthy. This is why you need to have contact with a dietitian, because you dont want to end up eating the same small number of foods all the time and getting malnutrition and vitamin deficiency. :geek:
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Re: Help needed please.

Postby ash » Sat Jul 24, 2010 8:50 pm

Hi,

Thank you Lisa and smelly for your help. I will follow your advice and the advice from my gp and see if it makes any difference.

Ash
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