# Need new things to try



## Lux (May 18, 2017)

Hi guys!

There's a TL DR thing at the end.

For the courageous, here is the long version :

I'm a 29-year-old male living in France and I've been sick since 2006.

At the time, my family was moving to another town that seemed far far away and so I was feeling dejected to lose all my friends and bearings.

I guess my guts felt the same because from one day to the next, I had diarrhea plus bloating after each meal (and usually all day long). Not long after, I went back to my home town, reunited with my friends but still, food caused havoc in my intestines.

So I'll pass on the awful following years I've had feeling helpless and alone in my problem to concentrate on what I've tried to mitigate my symptoms in a form of a list :

*Medical exams :*

- MRI (found nothing unusual)

- Colonoscopy (nothing much there either)

- Blood tests (came back ok, nothing outstanding)

- Stool tests (same here, ok)

*Conventional medicine :*

- various anti-depressant & anti-anxiety medications (no result and some gave me terrible nightmares, always fun







)

- Imodium, Loperamide (guess it works to some extent, but doesn't stop the bloating and simply won't work sometimes)

- beta-blockers (I noticed that my heart was beating fast after meals so why not, weird that my doctor approved it)

- anti-bloating medicine (no result)

*Alternative medicine :*

- Fasting (can't remember how long I lasted and what were the results but didn't seemed to help)

- Hypnotherapy (felt relaxed but that's it







)

- Acupuncture (no result)

- Some magnetic stuff (just to try but nothing of interest here)

*Supplements :*

- Fiber

- Zinc

- Curcuma

- Antihistamine (histamine causes inflammation so it seemed like a valid idea)

- L-glutamine

- Aloe vera

- Vitamin D

- All sorts of probiotics (right now I'm testing Culturelle which doesn't seem to do much)

- Water and milk Kefir

- Kombucha

About five years ago, I discovered that changing my diet changed the severity of my symptoms (so during first five years, I ate everything and felt terrible all day yay).

So how are things now? I control my symptoms and kinda feel normal (it's been too long since I felt normal that I'm not sure if how I'm feeling now is considered to be normal







). HOWEVER, my diet is extremely restricted, I'm sure I have some vitamins and minerals deficiencies but that's the only way that I can feel normal again.

*My diet :*

Breakfast : Rice flakes, a spoon of strawberry / raspberry jam, coconut milk

Lunch : White rice, emmental cheese, lemon juice

Snack : Rice cakes, strawberry / raspberry jam

Diner : White fish, White rice, emmental cheese, lemon juice

And that's it... Everyday.

So yeah thank god there's the cheese







(french remember?)

I'm ok with that diet though (mentally speaking), the essential part is that I feel good (or rather that I don't feel bad).

Doctors told me it was IBS but I don't experience abdominal pain, so I think it's more a case of food intolerances.

So here's what I'm intolerant to (causing either bloating or diarrhea), after making a lot of tests with various foods :

- Fructose

- Lactose

- Fiber (I'm not sure about that one but some foods that didn't contain the usual bad guyz and a tad too much fibers weren't ok)

- Fatty foods (fat fish, oil, seeds...)

- Gluten

- Dairy

- Histamine

- Tyramine (found in chocolate, miso... it causes me headaches (new thing!) )

Yep that's a lot









I forgot a lot of things that I've tried but yeah if you have some ideas of supplements and stuff that you think might work for my desperate case.

I still want to be able to eat more diverse foods, gain some weight, going out to restaurants without having to bring my own meal.

Ok, thanks a lot for reading what I thought was going to be short









*TL DR :*

These are the things I've tried to counter what seems to be food intolerances:

Conventional medicine :

- various anti-depressant & anti-anxiety medications (no result and some gave me terrible nightmares, always fun







)

- Imodium, Loperamide (guess it works to some extent, but doesn't stop the bloating and simply won't work sometimes)

- beta-blockers (I noticed that my heart was beating fast after meals so why not, weird that my doctor approved it)

- anti-bloating medicine (no result)

Alternative medicine :

- Hypnotherapy (felt relaxed but that's it







)

- Acupuncture (no result)

- Some magnetic stuff (just to try but nothing of interest here)

Supplements :

- Fiber

- Zinc

- Curcuma

- Antihistamine (histamine causes inflammation so it seemed like a valid idea)

- L-glutamine

- Aloe vera

- Vitamin D

- All sorts of probiotics (right now I'm testing Culturelle which doesn't seem to do much)

- Water and milk Kefir

- Kombucha

Non-exhaustive lists (forgot a lot), any ideas on what I could try (currently following a (too) restricted diet)?


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## Raw015 (May 9, 2017)

For how long did you try and decided it didnt help and did you take them in conjunction with each other or separate?

I also struggle with deficiency and am now on drink food: https://nutrition.abbott/nl/product/vital-drink

you need a dietitian to send out a perception for it, but it has all the vitamins and minerals you need and calories to basically not become a living corpse.


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## Rboe (Mar 26, 2017)

There are some diets specifically for IBS. Some good diets to research and try are the low FODMAP diet (http://www.med.monash.edu/cecs/gastro/fodmap/) the Candida diet with anti-fungals, and the SCD diet. <a>(.http://www.breakingtheviciouscycle.info/home/)</a> Some people have also reported success with a ketosis diet.

These diets have helped people. I used the Candida diet and am now doing SCD. I am about 90% better.


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## Salter (Oct 15, 2016)

Things you can try which are not listed in your post:

Calcium(+codein) - this is for symptomatic relief and works really great

some digestive enzymes - I myself haven't tried any yet, but it is on my try list

genetic tests - a underwent a genetic test and they found out that I am extremely lactose intolerant. They say it may contribute a great deal to the problem. You may also try some product which contains lactase (to help you digest milk products - just to try).

diaminooxidase (DAO) insufficiency - they found I have this problem. Again, it is basically a food intolerance and may cause a lot of trouble. You may also just try to buy some product which contains DAO (just to try whether you might have this).

Wish you luck in finding things that do help you. I have IBS-D as well. I guess I don't have to say: in my case colonoscopy:nothing, MRI:nothing, gastroscopy:nothing, parasites:nothing, infections:nothing, etc. So far I only know that I have the above mentioned 2 problems.


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## Helena (Apr 13, 2017)

Hi Lux, Have you heard of the FODMAP diet? I am on that and for breakfast I eat porridge which I have with normal milk as I don't have a problem with lactose but if you are, you can make it with something else like water or lactose free milk, rice, almond, soy, etc. I also have gluten free toast with some fish, or marmite and cheese, and I have always had a kiwifruit and a cup of herbal tea, with some konsyl-D, which I have been prescribed by doctor.

Then for lunch, i will have some leftover cooked rice with some veges added or salad. things like, capsicum, tomato, celery and cheese or egg. I can even eat bamboo shoots from a tin from the supermarket, and radishes, and lately some beetroot as a change , also some tinned lentils as they are low fodmap. I made soup the other day as I was sick and that was ok made with pumpkin, parsnip, potato, tomato, kale and flavourings. I can even eat a slice of normal wheat bread, but I don't eat more wheat bread as I can get trouble. I have some banana on that and can have a biscuit of some sort and then say 1/2 an orange and some herbal tea.

For snacks I have rice crackers with cheese or some peanut butter and a small handful of nuts and some fruit which is low FODMAP, like before.

For dinner I can have potato, carrot, green cabbage, frozen peas, or green beans, any protein, except I need to watch legumes as they aren't digested very well causing problems like gas and pain. I can have some pasta but prefer gluten free so I am not loading up on the wheat which is high Fodmap. Rice is good, but we don't have it for dinner very much and instead have potato as our main starch.

Then I have yoghurt and fruit, low fodmap for afterwards. and herbal tea.

I think I can't eat much fructose either nor fatty foods.

Not sure what you think of my foods.


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## Lux (May 18, 2017)

Thanks for your responses!

Raw015 -> I usually try them for a month, it depends if it causes me too much problems. I don't really feel like a living corpse yet  I'm skinny as hell but I still have energy.

Rboe -> Yep, I know the low fodmap diet, the thing is almost everything in it that should be ok isn't ok for me :s

So I kinda create my own diet (very limited I know  ), I try to expand it by using the food listed as ok in the fodmap diet so for instance, I tried banana which is low fodmap for a week -> bloating and looser stools, same goes for cantaloupe, kiwis... so that's why I added fiber to the list of my enemies (I'm trying to add carrots today, so I start by something like 1/3-1/4th of a carrot per meal, see how it goes)

Salter -> Calcium(+codein) I don't think I've ever tried, thanks I'll look into it

I didn't do genetic tests, it costs an arm doesn't it? I tried lactase but it didn't do much

Diamine oxidase yeah I wanted to try this but couldn't find any supplement that had it :s I'll search some more but that's why I went the antihistamine but to no avail (and it contained lactose...)

Have you find a supplement with diamine oxidase? If yes, how is it working for you?


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## Lux (May 18, 2017)

Helena -> Yep the low fodmap diet, I tried most of the food that you listed but my body doesn't want them (the day white rice is no longer ok for me, I'll be in trouble







)

Eggs (Nein, too fat maybe? Can't remember the result for only whites though), rice milk (I suppose it's the oil they add to it), tomatoes (ouch no), capsicum (fructose? or maybe fibers), beetroot (Nope for whatever reasons)... I tried many of the foods that are listed as ok in the low fodmap diet and they are not to me, so maybe there's still other things that cause problems, not only fodmaps.


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## Helena (Apr 13, 2017)

That's no good. It seems like you are eating low fodmap foods which are on elimination diet. Did you go through the elimination diet and then try different foods?


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## Lux (May 18, 2017)

I think I'm well into the elimination diet without being able to reintroduce anything.

When I try to reintroduce some food, it doesn't go well, even with small amounts.

It must be something else.


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## mellosphere (Sep 22, 2015)

Lux i totally feel the same way. I eat about 5 foods safely and if i eat anything else my symptoms get worse. And plus even what i eat now i am barely surviving between cramps and insomnia.


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## Lux (May 18, 2017)

I'm sure glad I don't have the cramps :s

Do you any ideas what's it related to?

In my case, I know that bloating and diarrhea are related to foods and sometimes I have pain and that's related to histamine


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## Salter (Oct 15, 2016)

Lux said:


> Thanks for your responses!
> 
> Raw015 -> I usually try them for a month, it depends if it causes me too much problems. I don't really feel like a living corpse yet
> 
> ...


You can buy calcium in any pharmacy (there was a thread called "Linda's calcium info" about this I think). Codein needs to be prescribed by a doctor, usually they prescribe a mix calcium+codein. I think it is not very often to use codein for IBS-D in many countries (it is an opiate), but in my country I can get as much as I want (this is also about trust between a patient and a doctor). It stops the D very quickly. It has some side effects, but if you don't overuse it, you won't notice.

In my country there is quiet a new company called GHC Genetics. They did these tests for me, my insurance covered it. Since doctors have no idea what is wrong in our bodies or how to fix it, I think that looking into our DNA code might help understand the mechanism of our problem.

Regarding DAO, well, there is a product called "Daosin" in our country - it is made in Austria I think. It contains only DAO harvested from pigs, find it on the web. And regarding the efficiency - it didn't help me much . Still, the blood test showed that I have too little of this enzyme in my body, so it is probably a part of the problem. Lowered DAO also in many cases indicates that your bowels are damaged in some way. In my case doctors then found that I have some very small (nearly not noticeable) inflammation changes in the gut - and there is currently no illness which this would fit (for example in Crohn's there are major inf. changes), this disease is simply called IBS-D. But DAO supplement may help in your case, no one knows.

Recently I bought my first lactase supplement, going to try it now.


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## Akn1965 (Jan 13, 2017)

Lux,
You may try colostrum.


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## dekkalife (Aug 21, 2015)

Wow, I had to read this twice because the first time all I was thinking was *... Did I write this? Is this one of my old posts?*

In terms of medications, supplements, and triggers, I've experienced the same.

One thing I have noticed you haven't tried is Colesevelam (Welchol, Lodalis). It is a bile acid sequestrant primarily used in people who are experiencing IBS-like symptoms as a result of having their gallbladder removed. However, there seems to be quite a few people that have noticed an improvement in their IBS-D symptoms who still have their gallbladder. If it is beneficial to you, it is likely you may have Bile Acid Malabsorption, which is suggested can be brought on by many things, one being SIBO (which seems to be prevalent in IBS-D patients). I'm trying it at the moment alongside Imodium, and I feel like it is helping.


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## Lux (May 18, 2017)

Yo!

Salter -> So I bought the calcium, it should arrive soon, we'll see. But as I eat a lot of emmental cheese, I find it hard to believe that I have a deficiency in calcium, I'm closer to being made out of calcium 

Regarding the codeine, I don't know, cause I'm not that worried about the diarrhea (in a relative way), there are foods or supplements that kinda work to stop it, it's more the bloating that troubles me, because there's nothing that prevents it and it's the most annoying to me.

I've no idea if there's any company that does genetic research for the public in france, I'll check 

Just bought Daosin from the website eat-all.com.

What will you try your lactase supplement with? Because I think there's also the casein to look out in dairy food. You'll see soon enough if there's a problem anyway 

Akn1965 -> Thanks for your suggestion, I'll try that!

dekkalife -> I didn't have my gallblader removed but yep, I'll give it a try too. I feel like I'll develop a new kind of disease from all those experiments, might be fun at least


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## Akn1965 (Jan 13, 2017)

Lux,
I deem it proper to say that colostrum with probiotics gives better results than calcium carbonate(caltrate).

I tried these two things but colostrum gave better result.

Thanks.


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## Lux (May 18, 2017)

Akn1965 -> Thanks, I just bought some, it comes from the US so it'll probably be 2-3 weeks before I can try it!


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## Dansal (Apr 19, 2017)

Sounds like me. Try quinoa that has been soaked for 2 days. Cook it. Then put it in a blender and puree it. Add some salt for more taste. The soaking removes most of the antinutrients and makes it more digestible.
A lot of good advice here, thought i would share what works for me


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## Akn1965 (Jan 13, 2017)

Is Quinoa working to stop diarrhea?


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## Lux (May 18, 2017)

Dansal -> Thanks for your response.

I tried quinoa twice or more, I always had problems with it. I think it's the insoluble fiber, which can irritate a sensitive gut.

That's maybe why I also react to things like corn, oats and most vegetables.

Blending carrots and spinach didn't go well on my poor, oppressed, misunderstood gut.

Akn1965 -> I don't think quinoa stops diarrhea, it's a gluten free food with lots of protein and it has some other minerals as well.


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## Dansal (Apr 19, 2017)

Lux, akn - for myself, i can not tolerate quinoa that hasnt been soaked for 2 days, cooked and then blended. otherwise i get the usual GI symptoms like diarrhea. When preparing for blending, do not add any water. just put it in as it is. it should come to a consistency of that like doughy texture. it should not be watery or anything like that. its more appetizing than it seems, just takes some planning ahead.

also note to change the water after the first 24 hours, just need to do this once, and then let it soak for another 24 hours.

steps.

1. soak quinoa in a bowl or whatever for 24 hours

2. after the first 24 hours, rinse quinoa and replace water ( water will be foamy and yellowish)

3. let it soak with the new water for 24 hours.

you will see sprouts at this stage ( water will have some bubbles and yellowish tinge)

4. cook it, add salt if you like ( i highly recommend adding salt for taste)

5. blend it without any water

6. enjoy


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## cf56 (Jan 25, 2014)

yep.... white rice is my very good friend.


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## Lux (May 18, 2017)

So!

I tried calcium, but after a time I've seen that emmental (cheese that I eat at every meal) is one of the top calcium providing cheese, there was no point in continuing taking the supplement.

I almost finished a month period of Culturelle (probiotics): no effect.

I tried Colostrum but I felt kind of a burning in my intestine (I supposed it was inflammation) and it made me depressed (an inflammation in my intestine influences my mood) so I discontinued it.

I've been trying DAOsin for a few days, a supplement that decomposes histamine (which is responsible for inflammation so it felt like a good idea), so far no harm but no good either.


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## Lux (May 18, 2017)

I've eaten for several days lean fish with skin -> Inflammation & depression feeling. Lean fish is usually fine but not with the skin apparently.

Why would the skin be so hard to digest? What do I lack?

Is it a problem of insufficient enzymes? (Tried once, didn't do much)

Not enough stomach acid? (Tried too )

If you have any clue what it suggests


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## dekkalife (Aug 21, 2015)

Just out of interest, have you tried cutting out the Emmental cheese? You mentioned that you have problems with both lactose and dairy. Emmental cheese may not contain much lactose, but it will contain casein, which can cause problems for people. Likewise, Colostrum may not be a good choice if you are sensitive to dairy.


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## Lux (May 18, 2017)

I think I tried a long time ago but rice alone ouch! The only thing that keeps me going is the emmental 

Plus rice apparently lacks amino acids that are in emmental so the combination of the two is supposed to make a complete protein.

But true enough, I've read about casein being potentially a problem.

I need something to put in my rice though 

When you have only 5-6 foods in total, you think twice before removing one 

I'm trying fasting right now. I remember trying it once and having the best sleep night in a long time. The second time I tried it, it wasn't that great.

I'll do kind of an intermittent fast, like eating every other day.

Thanks for you input.


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## dekkalife (Aug 21, 2015)

I understand where you're coming from. I'm only on 5-6 foods a day (fortified rice milk, rice cereal, gluten free bread, sliced chicken, white rice and chicken). I recently tried to introduce a little raspberry jam on toast but it didn't work out. Who knows though, you might find that swapping out the emmental cheese may allow you to introduce a few others in it's place. For example, chicken should provide you with more amino acids than cheese. I occasionally use Daiya Mozzarella (dairy-free) and when I mixed it with my rice (yes, I like cheesy rice), it genuinely tastes like cheese. It's a lot gentler on my stomach too.


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## Lux (May 18, 2017)

Raspberries cause me headaches (maybe because it contains tyramine like chocolate)

Perhaps I haven't felt inflammation from emmental cheese cause I eat spices like cardamom or turmeric with my rice (which is supposed to reduce inflammation).

I'll try to stop emmental cheese just to check, there were maybe other foods causing inflammation the first time I tried to stop it







(suppositions all the way! Feeling like a detective on an impossible case)


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## minimalizer (Jun 8, 2014)

Lux said:


> Thanks for your responses!
> 
> >Diamine oxidase yeah I wanted to try this but couldn't find any supplement that had it :s I'll search some more but that's why I went the antihistamine but to no avail (and it contained lactose...)
> 
> Have you find a supplement with diamine oxidase? If yes, how is it working for you?


http://umbrelluxdao.com/umbrellux-dao/for the U.S., but their website can guide you to your area's supplier.


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## Lux (May 18, 2017)

Thanks minimalizer but I've tried DAOsin (Diamine oxidase) but it didn't work :s


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## adamjeff (Oct 22, 2010)

I might have missed this, but have you been tested for SIBO yet? If not you definitely should. Also, you said you have some blood tests done. What exactly did they test? Did you get a food allergy, intolerance, and sensitivity test done? (Yes all 3 of these are different).


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## Lux (May 18, 2017)

I did once a test for lactose intolerance, which turned out to be positive. The doc then told me I must also have fructose intolerance then went on to say that I couldn't be intolerant to everything so I would have to heal my gut as a whole.

Sibo test wasn't a thing back then, and I still don't know if it's realiable now. Anyway, even without the test, I tried the natural/medical treatment.

I think I tried antibiotics 3 times in my life. The first time, after a day I felt perfectly normal, then it came back the day after, the other times, there was no improvement.

I tried natural antibiotics/antifungal, probiotics, l-glutamine... stuff like that, that are supposed to erase the bad things and replace it with the good but na, nothing worked.

I need to find a new doc to redo some tests and run some new ones, as my current doc, I guess, kinda dropped my case


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## ♧Pandora☆ (Jun 23, 2017)

Adam is right you need a food intolerance test. Starting any treatment plan without knowing intolerances for sure, is pointless. I had over 20 intolerances. 
Imagine my attempt at an elimination diet lol. Impossible.

Also the less food one eats the more likely they can become intolerant to them. As they are eating the same thing daily.


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## Lux (May 18, 2017)

I don't really see the point in doing a food intolerance test though.

My body will tell me if I'm intolerant to the food by sending me to the toilet anyway, so I'll know even without a test.

Dansal, I did your technique with the quinoa, applied it to lentils as well and I can eat them, of course only a table spoon but that's still something


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## mellosphere (Sep 22, 2015)

I agree with you Lux that i have never done a food intolerance test...my body tells me pretty clearly if i can eat something or not. Like last week i tried rice again instead of bread and all my stools turned to those long pencil thin stools which are gross.

Lux and dekka, you guys sound like me in that we only eat a few foods. Can either of you eat eggs? Just curious. My foods are eggs, chicken, pork, white bread, white tortillas, and saltine crackers. I think eggs are my lifesaver because they have a richness of flavor and texture when cooked in a few different ways that just helps me get by without eating other foods.

It's crazy how our bodies can feel intolerant to so many things. I do see the value of a test for the sake of knowing, but i feel like the problem isn't necessarily a specific food at all but more the fact that i have food in me. My body just doesnt like the feeling of having food or stool inside of me. I keep telling my wife that i wish there were a way i could survive without eating at all. Feel like that would be a major improvement.


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## Lux (May 18, 2017)

Yeah same, I'd be better off fasting forever 

And there's also the fact that it's not only foods but what's in them, like fiber, histamine, tyramine, fat...

Like I haven't done a test for tomatoes, but I know they'll be a problem cause there's seeds, skin, fibers... (among others)

I can't eat eggs, would love too cause there are many nutrients in them. I think whites were ok though (can't remember for sure).

Have you tried the technique of Dansal for eating quinoa / lentils? (soaking them for 2 days)

So far, so good for me, I can't eat much of it but seeing something different than rice in my plate is nice


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## Akn1965 (Jan 13, 2017)

Food intolerance test is not available in my town.So I have not done any food intolerance test. But I can know which food triggers my ibs-d..
White portion of egg suits me.
Lux and mellosphere,
I marked one thing that foods,supplements and medicines newly introduced works some days but after that they could not work.I can't find the reason for that .I'm undone.

Thanks.


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## mellosphere (Sep 22, 2015)

Akn1965 said:


> Food intolerance test is not available in my town.So I have not done any food intolerance test. But I can know which food triggers my ibs-d..
> White portion of egg suits me.
> Lux and mellosphere,
> I marked one thing that foods,supplements and medicines newly introduced works some days but after that they could not work.I can't find the reason for that .I'm undone.
> ...


Yes i have had the same experience that supplements and drugs work for a short period but if they are used continuously they become ineffective.


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## ♧Pandora☆ (Jun 23, 2017)

Theres not 1 tester in my town either. I drove over 8 hours in total to go to 2 totally seperate tests. I wanted to know for sure they was right.

On fasting.. i went from 11 stone to 7st 12 by not eating as it was easier as no symptoms. I lost a stone in a week so i knew i couldnt go on like that anymore. I was down to like 2 safe foods (or so i thought were safe lol) 
I was intolerant to both (they just didnt seem to cause me immediate symptoms) (plus my intolerance to them wasnt as bad as other foods)
With intolerances you can have a full intolerance to it or a boaderline intolerance to another etc.
Symptoms can come on asap or up to 2 days.. them symptoms can last up to 2 weeks for some.

Why do you all think think fasting works.

Your drugs or supps will stop working at some point as they only mask your root causes.

My root causes were over 20 intolerances. Leaky gut, low digestive enzymes, magnesium deficiency,abs, and more.

I wouldnt ever take drugs.
My supplements work every single day now. As i have delt with all root causes. Im lucky as if 1 of my supps does ever stop im as good as dead. Its been 3 years and they havent stopped yet thank god. I can not have certain symptoms ever come back.


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## mellosphere (Sep 22, 2015)

Fasting works because there's no food in there to cause a reaction. It's great, just not sustainable lol. I lost too much weight to fast anymore.

I don't take any drugs or supplements at the moment because as you said they are only treating the symptoms and I prefer to tolerate my symptoms (if possible) without suffering side effects of medicine on top of my symptoms.

What type of doctor did your testing pandora?


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## ♧Pandora☆ (Jun 23, 2017)

Are you in england ?

My intolerance test was done by a lady in Northampton.
£45 for an 1 hour test. Results there and then. My other one was another clinic far out somewhere lol. Il add links

I took 2 as so many people say oh there not real or there not arrcuate.. mine were spot on lol. Both listed over 20 foods &#128557;

I cut them out for a min of 3 months. I added back 1 by 1. Some took ober 6 months to reintroduce.

I should add i was also seeing a functional medicine practitioner.
She did not lable me with anything.

She tested me and treated me accordingly.

Magnesium deficiency... Magnesium supp

Low digestive enzymes... digestive enzymes.

Ph level was to acidic... alkaline diet 80/20

Leaky gut... l-glutamine

My ibs was left for a year by Hospitals. Nhs said i had server case of ibs. Nhs dietition put me on fodmaps. I then had to come off it as i got abs&#128584;

Docs have no clue about treating ibs. (Or even believe in abs yet i can test for abs)(and the cant test for ibs&#128584;&#128584;&#128584;&#128584

I like the fact you arent trying to mask symptoms. 
Some get offended when i say i went a year without 1 drug off nhs then i went private.
Some say oh if you was in the pain i am you would.. i was at deaths door daily, add abs on top of ibs symptoms i should of just killed myself but im to stubborn to give up lol. I researched so much, only took results in black and white as proof as to what i had. 
I have been labled once before with ibs & I Should of learnt from that, but i was young & trusting. Docs left me for 7 years in agony, that time round i swear as i told another poster on here i took a intolerance test and got told 6 foods i cut them all out immediately & within 48 i was symptom free. 3 months later i added them back & never looked back(6 years past). Lived off a junk food diet etc.

But then at 28 i got ill & Once again told ibs. Little did i know just how bad it was gunna get from there.
I should of never waited a year to take an intolerance test.

There is so many root causes ibs can be, 
Heres a few, 
Food intolerances, leaky gut, candida, sibo, Parasites, low stomach acid or bile, bam, vitamin deficiencies, herinas, no gallbladder, gut infections, pancreas problems, h.pylori, c.difficile, gallstones, endometriosis, pfd, ivc, intolerance to a1 protein in milk, thyroid disease, neuroendocrine imbalance, whipple disease, dysbiosis, wrong diet, celiac disease, non celiac sensitivity, ulcer, ibd, list goes on..
best place for any1 to start is the food they put in.


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## ♧Pandora☆ (Jun 23, 2017)

http://www.abingtonclinic.co.uk/complementary-therapies-northampton/vega-testing-northampton/


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## ♧Pandora☆ (Jun 23, 2017)

There is another in kent, mary roe, she retires soon&#128557;.

As long as you find the same sort of tester, who has years of experience, you should get accurate results.

First time round when i was 22 i used a guy called chris, he was brilliant to.


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## ♧Pandora☆ (Jun 23, 2017)

https://embracingnutrition.co.uk/about-functional-medicine/

This is not the lady i used but she does the same thing.

Some may find they dont need nothing more than an intolerance test. Some may only need an intolerance test plus leaky gut recovery plan. So may not even need a functional medicine practitioner. I did as i had abs to.


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## mellosphere (Sep 22, 2015)

Thanks for the info and story. I am in the usa so i will have to look through what tests and see what they have here. I also remembered that i did do a food test many years ago near the beginning of my ibs journey. I totally forgot about that. maybe it would be worth doing again depending on the cost. I looked back through my records and found the sheet they gave me. I just remember that i cut out everything that they said i should and still had symptoms so i felt like it didn't work. Not saying that's how it is for everyone though.


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## mellosphere (Sep 22, 2015)

By the way i actually cut out more foods than they said and i still had symptoms. I really dont feel like my problems are from specific foods but rather more from food in general aka all fructose, fiber, seeds, skins, harsh enzymes, etc. my body just doesn't like food.

Will look into it again tho.


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## mellosphere (Sep 22, 2015)

I agree about the drug stuff...i don't like adding side effects of drugs to my already severe ibs so i just stay off drugs as much as possible and stick to my 5 foods that cause the least reactions. Not a cure just more of a survival mechanism.


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## acureisoutthere (Jun 28, 2014)

Hi Lux,

Greetings to a freind from France !

About 3 1/2 years ago I had IBS-D. I hated it, and mine was not as bad as yours. Eventually a freind told me about the FODMAP diet, so I tried it and it helped, as long as I stuck to it. I also spent a great deal of time trying to learn about IBS-D and eventually I read about fecal microbiome transplants. Then, I also started learning about the human microbiome. I'm a bit of a bookworm, I love to read, and I started reading everything I could find on FMTs (fecal microbiome transplants) and the Human Microbiome. The more I read, and the more I learned, and the more I realized that it is really about the bacteria in our guts, these are what are giving us our IBS symptoms.

Consider this; the average American has already lost 40% of the diversity of this ecosystem of bacteria that is our microbiome(as compared to remote tribes that have never had antibiotics). The trouble is, this loss of diversity affects our health. Medical scientists are connecting damage to this ecosystem of bacteria with one disease after another, and this includes IBS-D. We are losing species of bacteria that help us digest food, train our immune system and do a host of other functions that keep us healthy.

I started reading so much about FMTs. Everything I could find. I learned that FMTs are reversing C. Diff. with a 98% success rate. I learned that a trial by Dr. Brandt in New York for IBS only achieved a 50% success rate in IBS-D. So, I started asking myself why. What could possibly be the difference ? It was then that I realized that the procedure they were using had a serious flaw. All doctors, at that time, were using a blender to prepare the sample. The problem is ; 90% of the bacteria they were trying to transplant are anaerobic. This means the die when exposed to air. What a mistake !

I also started learning more and more about the microbiome, the bacteria in our gut. I started asking what could be affecting this ecosystem ? Antibiotics wreck havoc on this ecosystem ( they kill up to a third of the species with just one course of antibiotic). But what else is affecting this ecosystem ? It turns out that there are numerous things that can be harmful. Antibacterials in hand soaps were one. So, I wrote letters to the FDA asking them to ban them (I'm sure others did too). Anyway, the FDA banned antibacterials in hand soaps in September, 2016. A big step forward as the average American was urinating Triclsoan ( the common antibacterial in these soaps) in 2016.

I also wrote letters asking authorities to ban antibiotics that were used in animal feed strictly for weight gain purposes. ( I'm sure many others wrote also ) Anyhow, these have been banned in animal feed as of January 1st, 2016. Another big step forward !

I need to cut this short and get to bed.......

I got rid of my IBS-D in 2015, via an FMT. I wish everyone here could experience this return to health.

Later


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## Lux (May 18, 2017)

I already tried l-glutamine, enzymes, low acid stomach supplements (betain hcl), but it did nothing.

Right now I'm taking a vitamins & minerals supplement to avoid deficiencies.

acureisoutthere -> Yeah I looked about FMTs and it seems promising but here in france we don't have the facilities, I think it was in the US where they have 'fecal' banks or something where they have frozen pills of donor's poop. The idea to suggest the homemade protocol to a friend is kinda hard to me, I wouldn't be able to look him in the eyes afterwards


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## acureisoutthere (Jun 28, 2014)

Hi Lux,

Yes, I understand. I'm thinking more along the lines of encouraging your doctors in France to learn about the microbiome, and about FMTs. Perhaps you can encourage one to start a clinical trial.

The Human Microbiome is the hottest area of research in medicine, or so I have read. I think doctors have the facilities to prepare things anaerobically which is a big plus. Finding a good donor is a challenge for the professional or the DIY too. We know that athletes have more diverse microbiomes and that they would be better donors because of this.

Another thought ; you could hop on the train and visit the Taymount Clinic in the UK. They have done 7 or 8 thousand of these FMTs and are reversing IBS-D. If you try them, please keep us posted, as it may offer hope to those that are suffering.


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## mellosphere (Sep 22, 2015)

I would personally LOVE to do an FMT at taymount but the $9850 cost plus airfare is a bit large for me right now. I am saving up for it though.


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## acureisoutthere (Jun 28, 2014)

mellosphere said:


> I would personally LOVE to do an FMT at taymount but the $9850 cost plus airfare is a bit large for me right now. I am saving up for it though.


Ouch ! I sure look forward to the day when insurance covers something like this. Perhaps when enough people participate in clinical trials and prove the effectiveness of FMTs to the FDA, then more doctors will do the procedure, and the insurance industry will cover them ?


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## mellosphere (Sep 22, 2015)

Yes i do hope so. They are starting to do FMT trials for cdiff at my hospital now at the University of Iowa. I am imploring my gastroenterologist to allow me to receive one but so far it hasn't happened. I haven't had cdiff yet which is why i have been denied.


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## acureisoutthere (Jun 28, 2014)

That's really great to hear that they are doing trials for C. Diff. at your local hospital.

In 2015, after my successful FMT to reverse my IBS-D, I was doing some reading, like I am usually doing. Anyway, I looked into C. Diff. and found that thousands of people in the US are dying every year from this disease. Now, I remembered reading about the success rate of Dr. Brandt in reversing C. Diff. with 2 FMTs, it was 98%. It dawned on me that these people didn't have to die, somebody has to speak up. So, I wrote the president of the AGA and explained that these people don't have to die, and we can change this. I gave him a copy of Dr. Brandt's study and explained about how important the human microbiome is to human health.

Around six months later, as I was doing more reading, I learned that the AGA was holding a national symposium on the human microbiome, and FMTs, to be held in March. Now, months later, there are hundreds of doctors across the US doing FMTs for C. Diff. and we are saving many more lives. It was a big 'win' in my humble opinion. I know I only played a small role, but I am glad I wrote, somebody had to. As an added benefit in addition to saving lives, we are also getting much more data about FMTs. It is now on the radar of many US doctors who had never heard of it before. Good steps forward.

I hope you can encourage your local doctor to consider a clinical trial for IBS-D using an FMT. If I can help them avoid mistakes and pitfalls, let me know.


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## Lux (May 18, 2017)

acureisoutthere -> Have you tried any antibiotics before trying FMT? if yes, was it in any way successful? for example, you felt fine for a few days then got back to normal bad.

Because I wonder if it's a sign that something is wrong only with the microbiota, if you feel fine for a few days, maybe it means that the bad bacteria were wiped out by the antibiotics but some of them survived and re-colonized the colon. But if nothing happens with antibiotics, perhaps it means that something else is wrong.


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## acureisoutthere (Jun 28, 2014)

Antibiotics decimate the flora of the intestinal tract, killing up to a third of them, with just one course of antibiotics.

I did use Xifaxan for 5 to 7 days, before my procedure, just to knock down the existing population. The idea is to wipe out the existing population, so you can give the new population of bacteria a better chance at taking over when you do an FMT. This is what Dr. Borody does, so I followed that. He uses a special cocktail of 3 different antibiotics to wipe out the existing population, then does a colonic lavage to wash/rinse out the large intestine also. I am confident that one of the antibiotics is similar to Xifaxan, which is targeted to the digestive tract, and another one is a biofilm disruptor. The third one, I am not sure.

There are competing thoughts on using an antibiotic prior to the FMT though. The Taymount Clinic does not use an antibiotic prior to the FMT, as far as I understand it. They do however use samples from several different donors, thus increasing the diversity of the species being transplanted, which of course is very beneficial.

We also have to remember that the appendix is playing a role. It is a reservoir for bacteria. It helps to re-establish the existing species. However that not what we want when we do an FMT. We want to establish a new ecosystem of bacteria, one that is more diverse, and is properly balanced, thus restoring health to the individual.

It is still an emerging science in some respects. In ten years we will have the data to back up the best approach. The Taymount Clinic is aware of the human microbiome and what might be harmful to this ecosystem. Glen is a microbiologist, so his background gives him a slight advantage in this respect. Of course Dr. Borody has been doing FMTs for something like 25 years or more, so his experience is very helpful. We owe him a great deal, without his pioneering work, the idea of an FMT would be lost in medical reports, and everyone mostly unaware of them.

There is a Taymount Clinic branch in the Bahamas, just a half hour flight from Florida. So, this is worth considering too.

Lux, I did not try antibiotics prior to using them as part of my FMT procedure.

I think it is important to remember that there are thousands of species of bacteria in your large intestine, with a total population of trillions. They are very small of course, yet we are learning that they really play a big role in human health. But, we are losing species and disrupting balances of good and bad species, thus our problems. Our over use of antibiotics is playing a big role, but there are several other things we do wrong as well. Thus, my reasoning that we have to stop the harm, before we can restore the health and diversity of this ecosystem, which in turn affects our health. It wouldn't make sense to keep exposing ourselves to something that is harmful and at the same time try to restore species. We may get some benefit or return of species but I suspect we limit our success unless we do our best to eliminate every single thing that we expose our body and microbiome to, that is harmful to our bacteria.

Lux, I would have to guess that you are missing beneficial species of bacteria. Without proper testing this is the best anyone can say. Which ones are missing ? Well, only the testing will tell you that. How do you re-store those missing species ? Right now, the best we have is an FMT. In the future I hope that they get better at making probiotics, so we have ones that actually implant on the epilithium, instead of just pass through, like we have now. When we have that ability to make probiotics with bacteria that actually implant and survive, then we will be much closer to restoring our microbiomes without and FMT. I have been trying to encourage this progress.

Dr. Rob Knight and his team at the Human Microbiome project are trying to decipher just which species are missing in relation to different diseases. Anybody from this site/forum that would contribute to this would help him to figure out IBS, just that much faster. Frankly, everyone here should be doing this. It's in their own interests to help them figure it out. When they have thousands more samples from IBS patients, they will be much better at helping us in return, I hope you understand.

Sorry, need to do some other things..............


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## Lux (May 18, 2017)

I'd love to do the FMT program but that's just too expensive right now :s


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## Akn1965 (Jan 13, 2017)

mellosphere said:


> I agree about the drug stuff...i don't like adding side effects of drugs to my already severe ibs so i just stay off drugs as much as possible and stick to my 5 foods that cause the least reactions. Not a cure just more of a survival mechanism.


what are that 5 foods that suit/cause the least reaction for you?


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## mellosphere (Sep 22, 2015)

I eat pork, chicken, egg, white bread, and saltine crackers. That's about it right now.


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## acureisoutthere (Jun 28, 2014)

Lux said:


> I'd love to do the FMT program but that's just too expensive right now :s


I understand freind. I know, that's a big price tag.

So, what can we do ? I think we can encourage our doctors to learn about the microbiome. Also, we can write the FDA and explain our symptoms and how much IBS affects our daily lives. We can encourage them to relax the ruling to allow FMTs for IBS without an IND, and a clinical trial. I am hopeful that once we have enough data on FMTs from use for reversing C. Diff. then the FDA will do this.

We can send in samples to the Human Microbiome Project, so they have more samples from IBS patients, and thus are able to better understand IBS and which species of missing bacteria are associated with it. This is a big step forward if we can help this to happen. Maybe, if we can get enough people to do this, IBS will be one of the first ones they really figure out, and thus be at the forefront of their efforts ?

We can also write letters to stop the harm we are doing to our microbiomes. The average person that takes NSAIDS has no idea that these are harmful to the microbiome. The average person that takes PPIs has no idea they are harmful to the microbiome. Most ladies that take birth control pills do not realize that these have an affect on their microbiome ( I suspect this is one of the reasons that more women than men have IBS, it's this affect from birth control pills). Each of us can make a small difference.

We can ask what kind of additives are in our food, and encourage research to see if harm is being done.

We can avoid glyphosate residues in foods by doing our best to eat non-GMO foods, and look for organic foods. The EPA is taking a second look at Roundup, after it was learned that the glyphosate residues were killing the beneficial bacteria of our gut microbiomes. Yes, I wrote letters about this. If more research validates the earlier research, we definitely need to ban Roundup herbicide.


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## acureisoutthere (Jun 28, 2014)

I just watched two interesting Youtube videos. One was "Taymount Clinic answers fecal transplant questions".

I learned some things; they have now done 20,000 of these FMTs.

Also, he talks about success in reversing post antibiotic diarrhea with an FMT from a personal perspective.






I also watched another one : "Fecal transplants and why you should give a poop" by Mark Davis. He's a naturopath in Oregon. It was pretty good too, just like the previous video.


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## dekkalife (Aug 21, 2015)

Just a word of caution in regard to the food intolerance blood test. Two of my gastroenterologists and my naturopath have referred to these tests as more of a novelty than a diagnostic tool. Apparently the foods you test a reaction to can change every 30 to 60 days with your new blood cycle, so the results are very temporary at best, and misleading at worst.


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## ♧Pandora☆ (Jun 23, 2017)

An intolerance test shouldn't be done by taking blood.

My test was non invasive. Why would anyone need blood to test for food intolerances.


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## Anaerobic FMT (Jul 23, 2017)

FMTs are working for us. The key, and I don't know why everyone is missing this ( https://www.ncbi.nlm...PMC4030581/#B14) is to boil the distilled water to remove the dissolved oxygen before using it to prepare the FMT. The best bacteria dies when exposed to oxygen and water contains lots of dissolved oxygen (ask the fish) which leaves when the water is brought to boiling (ask a fish why it dies in warm water and loves Alaska). After boiling the water we let it cool in sealed gallon jugs with CO2 blown into the air space.

We took the extra step of buying a CO2 cylinder and regulator (about $170) to fill the top of our mason jar with CO2 before blending the feces and water so that oxygen from the ambient air didn't enter the water while we were mixing the solution and kill the anaerobic bacteria. CO2 is more dense than air so it displaces the air on the top of the jar and the gallon jugs. We put a lid on the mason jar containing the feces and de-oxygenated distilled water with the CO2 filling the rest of the jar.

Oh, and use at least 500 ml of FMT solution; that is what the research says. Along with the stool being as fresh as it can be and from as close a relative or person living in your environment who is healthy as you can. The studies all seem to test one variable or another. The testimonies get some variables right but miss others. Why not get them all right and give yourself the best chance of healing - not just remission, but healing - that you can?

Medicine says the trouble is the immune system - take drugs to interfere with the immune system and maybe reduce inflamation. You've lived with that approach and don't like it any more than we have for the past few years.

Fecal microbiota transplant says the trouble is your immune system - your immune system hinges on strong bacterial balance in your gut so re-seed the bacteria so you can establish a good community like the people who are fortunate enough not to have bowel disease.

I'm not a terrific writer and I hope other people can run with this and spread the idea.


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## mellosphere (Sep 22, 2015)

Anaerobic FMT said:


> FMTs are working for us. The key, and I don't know why everyone is missing this ( https://www.ncbi.nlm...PMC4030581/#B14) is to boil the distilled water to remove the dissolved oxygen before using it to prepare the FMT. The best bacteria dies when exposed to oxygen and water contains lots of dissolved oxygen (ask the fish) which leaves when the water is brought to boiling (ask a fish why it dies in warm water and loves Alaska). After boiling the water we let it cool in sealed gallon jugs with CO2 blown into the air space.
> 
> We took the extra step of buying a CO2 cylinder and regulator (about $170) to fill the top of our mason jar with CO2 before blending the feces and water so that oxygen from the ambient air didn't enter the water while we were mixing the solution and kill the anaerobic bacteria. CO2 is more dense than air so it displaces the air on the top of the jar and the gallon jugs. We put a lid on the mason jar containing the feces and de-oxygenated distilled water with the CO2 filling the rest of the jar.
> 
> ...


Hi I am very interested in doing another FMT, just wondering who you are and who is the "us" and "we" you are talking about? Are you associated with Taymount or another clinic? Thanks!


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## Akn1965 (Jan 13, 2017)

mellosphere said:


> Hi I am very interested in doing another FMT, just wondering who you are and who is the "us" and "we" you are talking about? Are you associated with Taymount or another clinic? Thanks!


mellosphere,have You done fmt before?


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## mellosphere (Sep 22, 2015)

Yes at home with my wife as the donor. I did 7 FMT's over the course of 10 days but felt really no relief. I am considering trying again but would prefer a different donor. My wife is from a tropical country and i feel that her native bacteria is probably much different than mine. I'm not sure if that's a good thing or not. To be honest i don't think i have much bacteria left in there after all the antibiotics i've taken. But i still have enough to give me IBS-D. I'm wondering if a brother would be better but it's just harder to coordinate everything with someone who doesn't live with you.


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## acureisoutthere (Jun 28, 2014)

Mellow,

I read once that finding an ideal donor that is related has sometimes been helpful. However, just because they are related, they may not be an ideal donor for several other reasons.

I agree, finding the right donor is the tricky part. I spent a year trying to decide who to ask. I ended up finding a donor that hadn't had any antibiotics in many years, they had an excellent BMI, they exercised regularly, and were in absolute perfect physical and mental health. I lucked out.

When one considers that the average American has lost 40% of their diversity of this ecosystem we are trying to transplant, it's a challenge. So, we must do everything possible to find the best donor, it's going to make a difference.

I also asked my donor to eat a high amount of fresh fruits and fresh vegetables for two weeks prior to the 'donation'. Eating the right foods helps the good, helpful bacteria to predominate and thus provide a better sample. {Our microbiome can change somewhat, depending on the foods we eat.} If we (or our donor) eat processed foods with their added sugars, additives and emulsifiers this will hinder our success.

We have to think about what is best for our bacteria, at every step.

Some background about the microbiome:

In case I haven't mentioned it before; we are mostly bacteria. This is said because bacteria cells outnumber human cells by a factor of 1.4 to 1. {old research used to say 10 to 1} So, even though bacteria are very small, they really outnumber our human cells. The really important thing we are learning, is the huge role they play in our health. I am stuck by the number of diseases that have been linked to damage to the microbiome. Our rising rates of obesity, diabetes, Autism, Parkinson's and more, have all been linked to damage to this ecosystem. Then, where it get's really interesting, researchers are reversing disease by fecal microbiome transplants. I'll admit there are some challenges to doing this. But, what strikes me the most is the clear indication of the microbiome in affecting human health.


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## Lux (May 18, 2017)

So!

I came back just to say that I had an appointment with a gastroenterologist.

To her, my problem is psychological.

Basically, I'm fucked 

I have no clue what to do now (if she's right), cause I'm pretty good at dissecting my innerlife and emotion.

Ok, I had to move out from my city and 'lose' my friends when I was 18 (my problem started at around the same time) but I'm over it now, I've grown from and out of it, I still see my friends and I'm ok now.

So yeah I don't know 

Did you guyz have a psychological trauma or something when your trouble started? Or were you born with it?


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## acureisoutthere (Jun 28, 2014)

Lux,

you need a different gastroenterologist, one that understands the latest research on the microbiome.

I'd suggest learning everything you can about the human microbiome, on your own. (don't wait for your doctor). Read books, keep doing searches on the web, watch Youtube videos, etc.. You're eventually going to realize that the reason you have your problems is because your gut microbiome is messed up. That's the root cause of your problems Lux.


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## celestin (May 20, 2004)

Lux said:


> I came back just to say that I had an appointment with a gastroenterologist.
> 
> To her, my problem is psychological.


This doctor is stupid (in French: "c'est une débile, change de toubib!").


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