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New member

PostPosted: Wed Mar 09, 2016 7:28 pm
by Sallybow
Hi all
Just wanted to say hello and to know how you all cope mentally with this condition e.g yoga or medication from the doctor or therapy not long found out that I have tmau and are struggling to accept it. I feel like my life has completely changed and will never be the same again.Did anyone else feel like this and does it get easier
Love to hear from you all

Re: New member

PostPosted: Mon Mar 14, 2016 12:05 am
by Oneneo
Hi Sally,

I'm struggling too. I can't get tested, my gp refused to refer me for budget reasons, so I'm in limbo and have been for a long time. First became obvious when I was just a lad of13 and I'm now 40.

Do you have someone that you can talk to about it?

Re: New member

PostPosted: Mon Mar 14, 2016 7:12 pm
by Julieb
Hi Sally,
I posted an incredibly long message last night out of sheer desperation. I also would love to know how people cope with this as well. Also trying choline diet and really think it's made a difference but I'm literally eating 600 calories a day. It seriously looks like I can't eat anything.
I have everyday
Strawberries melon grapes
2 slices gluten free bread with free from margarine
Small pork loin chop sweet potatoes and mushrooms.
Could you give me some tips if you know of anything else I could eat
Thank you

Re: New member

PostPosted: Fri Mar 18, 2016 1:24 pm
by PinkPanther
Julieb, make sure the bread and the margarine doesn't contain lecithin - lecithin can make your smell worse

What are you drinking? Avoid coffee like the plague, avoid too much tea (green tea is OK, but make it weak unless you like the astringent, bitter taste), most herbal teas are OK for me (bear in mind everyone's different so you have to use trial and error here). Goes without saying, but don't drink fizzy soft drinks either. Neither sugar nor artificial sweetener is your friend. Water is good. Hot water with fresh lemon or lime slice if you can't stand water. (be wary of sulphites in bottled lemon/lime juice and use fresh. Fresh, natural food is always best if you can get it.

I hate to say this because I know how depressing this is already, but not eating enough can also make your smell worse - and so can over-eating, so avoid both of those where possible.

I'll tell you what I eat and you can do your own experiments and see if it works for you or not. I've currently got my smell level down to where it's possible to have a conversation and a smile from a checkout operator instead of a dirty look and a wrinkled nose!

Breakfast: usually porridge oats made with water and a pinch of salt and served with rice milk & tiny amounts of honey and coconut oil (honey and coconut oil are just for flavour). Or a berry smoothie (frozen berries with rice milk). Sometimes rice cakes with half an avocado and black pepper.

Lunch: Vegetable soup (carrot,squash and sweet potato with v. small amount of herbs) with a couple of rice cakes or non-wheat ryvitas or oat cakes (not usually oat cakes if I've had oats for breakfast - don't have too much of one thing). Sometimes a high quality cup a soup (check ingredients of ready made foods very carefully for lecithin or any other "smelly" type ingredient). Or a fruit smoothie if I haven't had one for breakfast.

Dinner: massive salad with olive oil and balsamic vinegar with a baked potato or roast sweet potatoes with coconut oil. If I feel I need a protein source (listen to your body when you eat), then I'll add half an avocado or 1 item of quorn product. I'm vegetarian so I suppose you'd have a meat source of protein, but be aware they are possibly more likely to make you smell. I can have a Quorn Southern style burger or a fillet or some "chicken-style" pieces, but only a few times a week and only 1 portion at a time. The avocado is best, but I try not to eat exactly the same things at every meal or every day. Everyone's different though, I've heard people say avocado and quorn make them smell, so again, it's trial and error.

Make your own fresh food as much as you can. I can eat brown or white rice, so if you can too try some stir fries. Fresh grated ginger is always good for flavour. Good for your digestion too.

For supps I take:
2 probiotics most days (sometimes only 1, sometimes I forget and have none!)
B2 twice a day (sometimes once if I forget).
Magnesium a few times a week.
Charcoal if I'm really windy or feel smelly (but not with other supps, it can absorb their goodness, apparently).

I'm also just starting to take grapeseed extract (thx lisa :) ). You can spend a fortune on supps so shop around. In the past I've also had some benefit from Liv.52 and kelp. Liv. 52 is an Ayurvedic herbal remedy that supports the liver.

Stress will make it worse, so will alcohol, sugar, junk food full of additives and anything which stresses your liver.

Please read this web site, it's got a lot of info which I think will help you and follow the link from the first page to the next part which mentions how GERD can cause gut dysbiosis:

There's a great post on another site by mpdela about how she helped her son's BO. I don't know if this will help you, but it's worth reading.

You might find you can eat more foods than you think. Always have moderate quantities at a meal. Go for fresh and natural.

I have to go because being on the PC gives me a migraine. There's so much to say I can't fit it all in. But things to avoid like the plague (for me, anyway): coffee, sugar, dairy*, yeast of any kind (including marmite), soy products like tofu and lecithin, cruciferous veg of any type (that includes rocket, so use romaine for salads), nuts, chocolate and beans. Nearly all other fruits and veg are fine for me.

Let us know how you get on. (btw, the * over dairy means I've cut dairy out and my smell has definitely lowered, but I can have tiny amounts occasionally now and it seems OK. When I say tiny I mean tiny - a sliver of cheese the size of a matchstick - just for the taste of it).

Re: New member

PostPosted: Fri Mar 18, 2016 1:32 pm
by PinkPanther
Forgot to add, I've also had some good results by avoiding foods high in thiols (google for a list). Thiols are very smelly chemicals! They are high in some foods. Sulphurous stuff like onions and garlic are high in thiols too.

Btw, I should add here that I've been working hard on lowering my smell since December 2015. I think giving your system a good spring clean helps before you can start healing. I had a colonic (constipation is bad for BO, too) and then I started building up good bacteria with probiotics as well as working on my diet.

Good luck.

Re: New member

PostPosted: Sat Mar 19, 2016 7:45 pm
by Julieb
Hi pink panther just seen your in depth reply. Thank you for that. I have a really weird thing that other people don't seem to have. I've noticed when I stand near meat or certain foods I can smell poo. It's terrible because I'm a dinner lady. It's only started happening since Iive started the strict low choline diet. It doesn't make sense.
Do you know if all rice milk is ok. Also I've been eating melon for 5 days and just heard it's no good. I don't understand how to work out the foods. I've seen the U.S. Low choline list and melon was low. I also realise that even if it's low choline but high sulfar I definitely can't have it. X

Re: New member

PostPosted: Sat Mar 19, 2016 7:46 pm
by Julieb
Forgot to say I'm only drinking bottled water.

Re: New member

PostPosted: Sun Mar 20, 2016 4:36 pm
by PinkPanther
Julieb, do you actually have diagnosed TMAU or just a metabolic body odour of some kind? Most of us think that there are other conditions similar to TMAU that aren't recognised by the medical establishment yet. I haven't been diagnosed with TMAU, and have some of the symptoms but it doesn't cover everything that makes me smell. You could have something else, like gut dysbiosis or leaky gut or something else entirely. It's not just about choline (not even for TMAU sufferers). The defective gene that processes choline in other people (but doesn't work properly for TMAU1) also processes other substances. Some people smell because their gut flora is dysfunctional, you really need to find out what the cause is for your own personal metabolism. This can take a while, especially if you're trying to work it out alone.

If you don't actually have classic TMAU, not all of the TMAU info will be relevant. The smelling of poo or rotten eggs may or may not be TMAU, other things can cause fecal odours as well. Some people find eating wheat or anything containing yeast will give a fecal smell. Like I said, you have to experiment to see what works for your own body chemistry.

I may well be wrong but I believe that we need to clean out our body and mind before we can totally heal (from anything, not just BO). That includes physical stuff like constipation and gut bacteria, and mental things like past events we've never dealt with.

Did you read the links I gave last time? I think the one dealing with GERD may be relevant for you. Please bear in mind I'm just a random whiffy person on the internet and not a doctor! I'm not in a position to give you medical advice - I can only point you in a direction that I have found helpful for my own BO. I've been researching and trying various things for years, with mixed success. You will need to do the same, thankfully there is way more info to be had nowadays than when I started searching for help.

I don't know if all rice milk is OK, check the ingredients and avoid lecithin or soya. I use Alpro. I've also used Oatly Oat milk in the past. Please note that some people say Oats make them smell, so this is why I can't say for sure that something is OK or not! Only what works for me (sorry to keep repeating myself, but it's very important that you realise that your body may or may not be smelling from the same things that mine does!).

I can't help you with melon, I don't eat it because I don't like the taste. I can't imagine that Watermelon would make you smell and it's supposed to be very cleansing, but who knows with us?? I never knew for nearly forty years that drinking coffee made me smell like farmyard manure!

Please read the links from my last post if you haven't yet. You might feel overwhelmed with all the info (some of it contradictory, I know!), but amongst it all something will apply to you and it all increases your knowledge of the subject.

Btw, I don't know about the standing near meat and smelling poo - but if you're not eating enough, then that can cause fecal BO IMO. It might not be the low choline that's the problem, it might be the lack of food. Do you see what I mean? Or it might be something else. That's what I mean by trial and error.

If I was you (and this is jmho) I'd look into gut dysbiosis and leaky gut. I'd make sure my digestive system had a good clear out then I'd eat a very "clean" diet with as much fresh and natural produce as possible. Plenty of water or weak herbal tea. Take a good probiotic (I like bio-kult or probiotic plus personally). Take vitamin B2 morning and night time (it won't harm you even it doesn't help, and I found it helpful). Keep a food diary*, write down every single thing that passes your lips. Make a note when somebody indicates you're smelling (and what of). This has really helped me work out what's a trigger and what isn't. I'd start by doing that for 1 week maybe and see if anything changes.

I did the exclusion diet in the book "Lick the Sugar Habit" by Nancy Appleton after Xmas and I think it really helped. It's only for 2 weeks, so not really much of a chore. An exclusion diet might be the way to go for you. Did you used to eat a lot of sugary things before you got this?

Btw, did I say before to cut out unnecessary sugar as much as possible? It's a perfect food for the bad bacteria and lots of people (inc. me) find cutting it out helps their smell enormously.

Is it out of the question for you to visit your GP? I'm concerned that if you don't have TMAU, just following a TMAU protocol isn't going to help you that much and will leave you frustrated.

*in the food diary, I also make notes about any health conditions, bowel function, headaches, mood swings and the like. It all helps to piece the puzzle together (and makes you sound like a right hypochondriac, but ce la vie). :lol:

Don't despair, you'll get there in the end.

Re: New member

PostPosted: Sun Mar 20, 2016 8:37 pm
by Julieb
Hi, I'm sorry it takes me a while to respond, but I don't get any notification when someone posts a reply to me.
I really appreciate your very helpful advice. I did look at the link of gerd and acid coming up is definitely correct. I have oesophagitis disease apparently and my oesophagus was actually bleeding and inflamed from having acid reflux for 3 years without knowing. I also have heritius hernia and am roughly 5 stone overweight. I've always ate pure junk food and drunk loads of diet coke. I've had a chesty cough for 1 1/2 years everyday with no let up. Like post nasal drip. I'm blowing green out of my nose all the time. I've had ent camera up nose he said no problems he can see. I've had colonoscopy there was nothing wrong I'm anaemic and have a fibroid in my womb. Asthma hay fever seem to have loads of illnesses. I think my random odour episodes started about 2/3 years ago. I noticed my husband (now leading seperate lives but living in same house for last 5 years). When I had been sitting in a room for around 15 mins would come in and say it really smells of strong bo in here. I'm very clean person so couldn't understand. I work as dinner lady in a school 5 lunchtimes a week. I can't understand when there are certain cooking smells it makes my smell worse. And the whole dining room smells horrible. It's devastating. I understand acid reflux can cause bad breathe but surely it wouldn't effect the whole room. I also think I have a yeast problem because since cutting out dairy and yeast and almost everything a strange growth I had on my toe has suddenly disappeared also the skin problem on my elbows has almost gone it's really strange. I've also noticed I'm not using the asthma pump as much.
Sulfar foods definitely make me smell worse and now my feet have started sweating and really smell!!! I'm going to look at leaking gut in more detail. I haven't been diagnosed cos 2 Drs showed no interest. The first one said go to gynaecologist second one nicer and mentioned gastro something. I'm seeing a homeopath on Tuesday and going to see what she says she also does reiki and food something. Did the charcoal work for you and I ate ciabatta small piece today and don't no if it's ok with me or not I feel like I can smell poo but no one to ask lol