Diet

[Sallybow]

Its me again
Sorry to be a pest but could anyone advise when its best time of day to take riboflavin and active charcoal,also I used to chew a lot of gum because of bad breathe ive noticed it has soy lecithin in it does anyone no anything else to keep your mouth fresh?

[Pebble]

Hi
I take the riboflavin with my meal and charcoal a little while afterwards.

[Sallybow]

Thanks for that

[Tenacity]

Hi Tenacity
looking at what your saying my diet needs to be more strict.The leaflet given to me did mention soy lecithin and 3 food group low med high in choline content.The dietician also emailed me the usda databasde for choline content to which she explained to me in the hosp.
I still have been having tea with milk,toast with butter,jacket pot with butter,cornflakes with rice milk with some fruit in between meals.So going forward am just going to have fresh fruit and veg green tea see how I go on that for a week.I have tmau 1 does this make a difference to anything

Ooh, I don't know, Sallybow. A week on just fruit and veg sounds a bit hard going to me. Aren't you worried you'll faint without any protein or carbs? I have to confess that I can't have toast or jacket potato, but I think I'm quite rare. Everybody on here seems fine with potatoes. I can only have the processed kind if they're very well cooked (e.g. grilled hash browns, low fat oven chips cooked on a high heat etc). Cutting out tea with milk does sound like a sensible experiment. I can only really have a cup a day before I might as well not bother with the diet.

I take it the dietitian gave you lots of advice about which fruits and vegetables to avoid too (e.g. cruciferous vegetables, bananas etc)?

I go back and forth on the timings of the pills. The whole idea of charcoal is that if binds to anything you've swallowed if you take it within an hour. Therefore, in theory, you are diminishing the effects of the riboflavin if you take it with charcoal. I often do take them together out of laziness, but sometimes I have a small piece of fruit with riboflavin or a multivitamin, wait a couple of hours, and then have a small snack with two charcoal tablets. It's a hard balancing act, and I'm not sure I know the answer all these years later.

Good luck again

[Sallybow]

I know I caved in today and had a jacket potatoe lol.Ive only seen the dietician once so have loads more questions when I go back to see her.I know about the veg but she didn't mention fruit or bananas?
Thanks for all you help and advise just another question does the smell ever go no matter how strict your diet?

[PinkPanther]

Ooh, I don't know, Sallybow. A week on just fruit and veg sounds a bit hard going to me. Aren't you worried you'll faint without any protein or carbs? I have to confess that I can't have toast or jacket potato, but I think I'm quite rare. Everybody on here seems fine with potatoes. I can only have the processed kind if they're very well cooked (e.g. grilled hash browns, low fat oven chips cooked on a high heat etc). Cutting out tea with milk does sound like a sensible experiment. I can only really have a cup a day before I might as well not bother with the diet.

That's interesting. I have quite a lot of jacket potatoes. What do you have them with? How do you cook them?

I read a post from Elliegirl once that said boiling potatoes for a long time removed some of the sulphur. I don't even know if that's true, but if it is then maybe it's the length of time they're cooked or something? I nuke mine for 5 mins in the microwave then oven bake for at least 40 mins at 200c. Rub the outside with olive oil and salt before putting in the oven and they're gorgeous.

I always have a salad with about a tablespoon each of balsamic Vinegar and olive oil and I also put coconut oil and black pepper on the spud. I don't usually have any extra protein with it, or not much.

Are you having it just plain or what? I'm intrigued.

I do realise we all have our own body chemistry and smells etc, but it's a shame you can't eat them because they're ideal otherwise.

Sallybow: I ate just fresh fruit and veg for a while and I think it really helped with my odour, and with cleansing the colon (also had a colonic) but I felt weak and tearful a lot of the time so I had to add some grains in the end. However, I'm definitely in favour of it for at least a while to see if it helps clear your system out. It's easier if you have a nutribullet or similar (but not a juicer, you need the fibre to help with cleansing). Some people do this for 3 or 4 days occasionally instead of a total fast.

[Tenacity]

I know about the veg but she didn't mention fruit or bananas?
Thanks for all you help and advise just another question does the smell ever go no matter how strict your diet?

Hello again,

Hope you're looking forward to the weekend? I have a rare couple of days to myself, so made the most of this evening by eating a few moderately-high-in-choline foods.

To be fair, most fruits are totally fine to eat. The only ones I can think of that aren't are bananas and melons. There may be a couple more.
Fruits that I eat include:
-All berries (strawberries, blueberries, raspberries, blackberries etc)
-Soft fruits such as nectarines, plums, mango and pineapple
-Cherries
-Coconut (high in calories, fibre and fat if you find you're lacking)
-citrus fruits (orange, lemon, lime and grapefruit)
-pears (fresh or tinned)
-grapesThe list could go on!
I've heard of one person saying they can't eat apples, but I eat them all the time and am fine with them. I even eat those apple crisps you get from Tesco etc sometimes.

I know what you mean re the final question. I still think like that too, but I'm not sure it's really the way the world works. Everybody perceives tastes and smells differently. There is a chemical called Phenylthiocarbamide (PTC) that about 30% of the population are completely unable to taste. There are loads of chemical smells that are the same (there's a famous one that begins with an O, but the name escapes me). Some people are genetically unable to smell certain smells. Similarly, some people will be able to smell TMA in very small concentrations and others will hardly be able to smell it at all. I think that makes people paranoid sometimes, because they will think they are fine and then overhear a stray comment. The sad truth of the matter is that one person may be very sensitive to the smell of TMA, and everybody else around them is wondering what the fuss is about. To the TMAU sufferer it will seem like that one individual speaks for everybody.

Have I had days when my levels are so low I could pass for 'normal' to most people? Sure, loads. There was a period in my life when I had those days way more than the bad days. It was a period when I had an easy part-time job that I didn't need many calories to do. It was a period in my life when I devoted myself to appearing like a non-TMAU sufferer, and boy is that an insight into how much this condition changes your personality. The bad days will still come, though, and you can't always control them. You also won't be able to control whether, on a good day, that one person who is really sensitive to the smell of TMA happens to be around.

In the end it's all about the trade-off. I wasn't happy with an easy job that any idiot could to. There were things I wanted to accomplish; contributions I wanted to make. So now I have to eat more calories to get through the day, and it's hard.

I'm in danger of waffling.

Thing is, I don't know you. You may be a mild sufferer, and if that's the case you may be able to get rid of the TMA odour completely most days. Even if you can't, your good days will come. It's all a matter of being patient and figuring things out - and of working out how much of your life you're willing to compromise to be rid of TMAU.

And it's about drinking water. Lots and lots of water.

Hope there was an answer to your question somewhere in my ramblings.

That's interesting. I have quite a lot of jacket potatoes. What do you have them with? How do you cook them?

I read a post from Elliegirl once that said boiling potatoes for a long time removed some of the sulphur. I don't even know if that's true, but if it is then maybe it's the length of time they're cooked or something? I nuke mine for 5 mins in the microwave then oven bake for at least 40 mins at 200c. Rub the outside with olive oil and salt before putting in the oven and they're gorgeous.

I always have a salad with about a tablespoon each of balsamic Vinegar and olive oil and I also put coconut oil and black pepper on the spud. I don't usually have any extra protein with it, or not much.

Are you having it just plain or what? I'm intrigued.

I do realise we all have our own body chemistry and smells etc, but it's a shame you can't eat them because they're ideal otherwise.

Hi again,

I'm probably being too black and white. I wouldn't say I can't have jacket potato, but it counts as a 'moderate' level of choline for me, and I tend to avoid those most of the time. Of course some people find they can have a moderate choline intake and still get by. I think I might be a severe sufferer who is controlling their symptoms well enough to think they are only moderate . If I just microwaved a jacket potato I wouldn't be able to eat it. If I crisp it in the oven like you (with or without fat on the outside) then I can eat the skin, but not the fluffy white part in the middle. If I parboil the potatoes and then roast them or do anything that breaks down the complex sugars into simpler ones (i.e. makes the texture sweeter and more crispy) such as grilling, griddling etc then I can have a small jacket potato's worth, sure. Like you I tend to eat all potato products with salad, sometimes with balsamic and oil, often just plain. I like mushrooms as a filling or accompaniment, or scrambled egg white/egg white omelette with any number of low-choline veg inside. I don't think you need protein with every meal. So long as you're getting some every day, right?

Thinking about it, it's entirely possible that all I'm doing is increasing the charcoal content of the potato by cooking it half to death, and that's why I can eat the well-cooked variety only. It could be any number of reasons, though. There's more to vegetable biochemistry than meets the eye. :p

I'm not bothered that I can't eat them in high quantities, really. I do eat potato all the time, just not the jacket kind!

I've never heard that about sulphur. It would be interesting to see the original research. I know potato growers used to add sulphur to their crops (maybe they still do?) so it could be something to do with the advice to boil your potatoes well to get rid of lingering traces? I wouldn't have thought the sulphur is the issue for me, though. Anything with a choline content of more than 10mg per 100g seems to be too much for a main meal constituent for me.

Hope my long, late-night post makes sense to some people on here!

Bye for now

[Sallybow]

Ha just seen your message just had another jacket potatoe il start boiling them from tommorrow it's all good advice

[Iketha]

Hello you two,

I have, like a few others, been trying, with success, the GrapeSeed Oil, GrapeSeed Extract, Fruity Extra Virgin Olive Oil, with low choline diet.
Quite a few of us have noticed a definite improvement, me included.
It might be worth a try, the above ingredients contain DMB, which helps get rid of TMAU in our stomachs.
If you Google it you will get more information.
I have been on this religiously now for nearly a month, I'm very impressed, to say the least.
Hope this helps.

Hi Lisa,

This is amazing! How much oil do you have each day?

[Lisa]

Hi Iketha,

About 2 tablespoons drizzled over my rice.