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01-17-2013, 02:16 PM   #1
InstantCoffee
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Success through diet

At the suggestion of 723crossroads I've decided to share my success, as for the first time in a long time I feel well and have sustainably felt well for many months now.

There was a day I could eat anything on the menu as long as I had my Remicade infusions, and shortly before my infusion period I would get sensitivities, and symptoms like foul smelling burps.

In time though I experienced severe stomach cramping, pain, and diarrhea, it got to the point where I was curled in a ball in my bed with chills and severe pain and the light in the room seemed to be pulsating.
In time I discovered that my stomach no longer tolerated skinned fruits, at least this was the culprit as I understood it, and I removed peppers, tomatoes, and onions eventually onions, apples, pears and virtually all skinned fruits from my diet.

As time went on so too did my intolerance grow, I had to give up all fruits and many vegetables, some could sneak by like bananas and oddly beans for a while, but in time those got the boot too.

When I thought I got it all my symptoms started coming back, but different and worse, and I became very ill, food wouldn't leave my stomach, I was constantly in extreme bloated pain, vomiting, all sorts of bad things. I'd developed an ulcer and the sphincter to exit my stomach had become inflamed.

The light clicked when someone got me thinking about the rise in gluten intolerance, and my symptoms all came shortly after consuming wheat products like bread, pasta, etc. I cut gluten to great improvement but still with chronic diarrhea and some on-and-off. I thought I was just doomed to suffer crohn's symptoms and there was no more dietary issues, but I was still wrong!

Next on the chopping block was cooking oils.

Finally I called enough was enough and decided I needed an ANSWER, this needed to make sense some how, someone must understand why this happens and I began digging and digging and what I discovered was that leaky gut explains most of my symptoms.

For those of you new to the concept, leaky gut is basically when your intestinal wall is compromised and leaks partially digested food proteins into your bloodstream that are seen as a foreign invader and cause auto immune reactions. The solution is to heal the gut, but HOW you attack this solution is different from situation to situation.

http://www.fourhourworkweek.com/blog...diet-solution/

This particular link shared with me by hugh in the nutrition section was helpful in my piecing some of the puzzle together and resulted on me following a mostly ketogenic diet.

Information on it can be found here
http://forum.bodybuilding.com/showth...hp?t=132598293

It's very similar to a Paleo diet except as yet I cannot tolerate most fruits and vegetables so my sugar intake is mostly limited to ice cream and honey.

Unfortunately I know many IBD sufferers also suffer lactose intolerance, this is not my case but you may be able to find a way around this with non-dairy milk replacements and the like depending on your particular case.

What I've taken away from this is that the western diet is not necessarily the cause of Crohn's but definitely goes a long way to making it worse if you aren't careful about what you're putting in your body.

Keeping a food diary is very helpful, if you're having symptoms start tracking what you eat and comparing symptoms. Try eliminating common trigger foods like lactose, gluten, and I especially recommend avoiding HIGH FRUCTOSE CORN SYRUP as that was the leading cause of my chronic diarrhea, energy loss, constant feeling of thirst, and many other issues, and it's in nearly every sweet product.

Consider trying an elimination diet and it could save you a lot of pain in the long run, break your diet down to only fundamental foods, the basic, purest things you can tolerate, and adding back new foods one at a time, giving each one at least a day of its own to digest and check for symptoms.

The hard part is that, like me, I wasn't intolerant to many of these things all along, they developed over time, and I'm hoping some things like fruits and veggies I can eventually add back no that the things causing my leaky gut have been removed.
01-17-2013, 03:35 PM   #2
723crossroads
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At the suggestion of 723crossroads I've decided to share my success, as for the first time in a long time I feel well and have sustainably felt well for many months now.

There was a day I could eat anything on the menu as long as I had my Remicade infusions, and shortly before my infusion period I would get sensitivities, and symptoms like foul smelling burps.

In time though I experienced severe stomach cramping, pain, and diarrhea, it got to the point where I was curled in a ball in my bed with chills and severe pain and the light in the room seemed to be pulsating.
In time I discovered that my stomach no longer tolerated skinned fruits, at least this was the culprit as I understood it, and I removed peppers, tomatoes, and onions eventually onions, apples, pears and virtually all skinned fruits from my diet.

As time went on so too did my intolerance grow, I had to give up all fruits and many vegetables, some could sneak by like bananas and oddly beans for a while, but in time those got the boot too.

When I thought I got it all my symptoms started coming back, but different and worse, and I became very ill, food wouldn't leave my stomach, I was constantly in extreme bloated pain, vomiting, all sorts of bad things. I'd developed an ulcer and the sphincter to exit my stomach had become inflamed.

The light clicked when someone got me thinking about the rise in gluten intolerance, and my symptoms all came shortly after consuming wheat products like bread, pasta, etc. I cut gluten to great improvement but still with chronic diarrhea and some on-and-off. I thought I was just doomed to suffer crohn's symptoms and there was no more dietary issues, but I was still wrong!

Next on the chopping block was cooking oils.

Finally I called enough was enough and decided I needed an ANSWER, this needed to make sense some how, someone must understand why this happens and I began digging and digging and what I discovered was that leaky gut explains most of my symptoms.

For those of you new to the concept, leaky gut is basically when your intestinal wall is compromised and leaks partially digested food proteins into your bloodstream that are seen as a foreign invader and cause auto immune reactions. The solution is to heal the gut, but HOW you attack this solution is different from situation to situation.

http://www.fourhourworkweek.com/blog...diet-solution/

This particular link shared with me by hugh in the nutrition section was helpful in my piecing some of the puzzle together and resulted on me following a mostly ketogenic diet.

Information on it can be found here
http://forum.bodybuilding.com/showth...hp?t=132598293

It's very similar to a Paleo diet except as yet I cannot tolerate most fruits and vegetables so my sugar intake is mostly limited to ice cream and honey.

Unfortunately I know many IBD sufferers also suffer lactose intolerance, this is not my case but you may be able to find a way around this with non-dairy milk replacements and the like depending on your particular case.

What I've taken away from this is that the western diet is not necessarily the cause of Crohn's but definitely goes a long way to making it worse if you aren't careful about what you're putting in your body.

Keeping a food diary is very helpful, if you're having symptoms start tracking what you eat and comparing symptoms. Try eliminating common trigger foods like lactose, gluten, and I especially recommend avoiding HIGH FRUCTOSE CORN SYRUP as that was the leading cause of my chronic diarrhea, energy loss, constant feeling of thirst, and many other issues, and it's in nearly every sweet product.

Consider trying an elimination diet and it could save you a lot of pain in the long run, break your diet down to only fundamental foods, the basic, purest things you can tolerate, and adding back new foods one at a time, giving each one at least a day of its own to digest and check for symptoms.

The hard part is that, like me, I wasn't intolerant to many of these things all along, they developed over time, and I'm hoping some things like fruits and veggies I can eventually add back no that the things causing my leaky gut have been removed.
Thankyou for sharing your story! I know many people will appreciate it and learn new things!
01-18-2013, 08:55 AM   #3
UnXmas
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I'm very pleased you've found something that works so well for you, but I hope it's ok if I post my own less positive results with leaky gut syndrome and food intolerances.

Years ago as a teenager my illness was misdiagnosed as Irritable Bowel Syndrome. Getting no help from doctors, and overwhelmed by the embarrassment of losing control of my bowels, etc., I went through a phase of trying various alternative and dietary treatments.

One nutritionist told me I had leaky gut and food intolerances. I did the whole elimination diet thing and followed this nutritionist's take on the leaky gut healing diet.

It made all my sympoms worse. I was already underweight and following his advice I lost more. All the fibre he had me on gave me severe diarrhoea; the "healthy" foods made me bloated and in pain all the time.

I couldn't go out to eat socially and hated eating. I became neurotic about all the rules I'd been given to follow.

And I was paying large sums of money to this nutritionist, and then to a couple of others as well who had variations of the same kind of diets (and who each said theirs was the perfect one for me), who also succeded in making me feel more unwell than ever.

When I went back to eating a conventional western diet I immediately felt much better, physically and mentally. I eat a balanced diet now except only in small amounts and with very little fibre. I can eat socially and don't worry about food nearly so much.

Of course my current diet hasn't cured me and doesn't stop my symptoms. But in my case I don't think there's any diet that could (and I tried enough diets to realise this!).

I think the leaky gut concept is too alternative for me. I like science and conventional medicine. I realise now how I just don't have the right personality for this type of approach to managing illness to work for me. I was very unhappy but thought it would be worth it if it made me better. I should have realised much sooner that the type of mindset required was not one I have. I'm far too neurotic to be able to manage a diet with strict rules - I just end up paranoid about my eating.

I know concepts like leaky gut, food intolerance testing, etc. help a lot of people and give good results to many (albeit usually anecdotal). But I would advise people to be careful about who they hand their money over to. There are people out there who give tests for food intolerances that have no sound basis whatsoever. There are also real food intolerances and tests that detect them - you just have to be careful that the tests you're taking are genunine.

Make sure you're trying diets for the right reasons are don't have expectations that are too high (I wanted to be cured! Like that was ever going to happen!).

InstantCoffee: you've obviously found a diet and approach that is just the right match for you. I hope it was ok that I posted my experiences. It brought back a lot of memories reading about leaky gut again a good few years after I was first introduced to it. I'm sure there are others here who will benefit from reading your post. I found it interesting to see someone who has had success with this, as I've wondered whether it was the diets/concepts that were flawed or whether it was simply not something that I was compatible with.

I hope your success continues.

Last edited by UnXmas; 01-18-2013 at 09:22 AM.
01-18-2013, 01:53 PM   #4
InstantCoffee
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Have you ever tried avoiding fiber altogether? I take in almost zero fiber, I sometimes have constipation and take a little coconut oil to get things going.

Once every day or two I make a tonic, I heat up a cup of milk in the microwave until it's fairly hot, I mix a spoonful of honey, black strap molasses and coconut oil. It tastes very good, like sweetened milk, a bit less sweet than a milk shake, the oil and honey counter the bitterness of the molasses.

I too went to a nutritionist that tried to tell me to eat certain fibers and wanted an upper GI scan, I had just had one a month prior but he wanted a slightly different one and I was having none of it, the only thing I took away from it was to start taking a Centrum multi-vitamin, I knew from personal experience there are almost no fibers I can tolerate and I can sleep better at night constipated than with diarrhea.
01-18-2013, 03:56 PM   #5
723crossroads
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I'm very pleased you've found something that works so well for you, but I hope it's ok if I post my own less positive results with leaky gut syndrome and food intolerances.

Years ago as a teenager my illness was misdiagnosed as Irritable Bowel Syndrome. Getting no help from doctors, and overwhelmed by the embarrassment of losing control of my bowels, etc., I went through a phase of trying various alternative and dietary treatments.

One nutritionist told me I had leaky gut and food intolerances. I did the whole elimination diet thing and followed this nutritionist's take on the leaky gut healing diet.

It made all my sympoms worse. I was already underweight and following his advice I lost more. All the fibre he had me on gave me severe diarrhoea; the "healthy" foods made me bloated and in pain all the time.

I couldn't go out to eat socially and hated eating. I became neurotic about all the rules I'd been given to follow.

And I was paying large sums of money to this nutritionist, and then to a couple of others as well who had variations of the same kind of diets (and who each said theirs was the perfect one for me), who also succeded in making me feel more unwell than ever.

When I went back to eating a conventional western diet I immediately felt much better, physically and mentally. I eat a balanced diet now except only in small amounts and with very little fibre. I can eat socially and don't worry about food nearly so much.

Of course my current diet hasn't cured me and doesn't stop my symptoms. But in my case I don't think there's any diet that could (and I tried enough diets to realise this!).

I think the leaky gut concept is too alternative for me. I like science and conventional medicine. I realise now how I just don't have the right personality for this type of approach to managing illness to work for me. I was very unhappy but thought it would be worth it if it made me better. I should have realised much sooner that the type of mindset required was not one I have. I'm far too neurotic to be able to manage a diet with strict rules - I just end up paranoid about my eating.

I know concepts like leaky gut, food intolerance testing, etc. help a lot of people and give good results to many (albeit usually anecdotal). But I would advise people to be careful about who they hand their money over to. There are people out there who give tests for food intolerances that have no sound basis whatsoever. There are also real food intolerances and tests that detect them - you just have to be careful that the tests you're taking are genunine.

Make sure you're trying diets for the right reasons are don't have expectations that are too high (I wanted to be cured! Like that was ever going to happen!).

InstantCoffee: you've obviously found a diet and approach that is just the right match for you. I hope it was ok that I posted my experiences. It brought back a lot of memories reading about leaky gut again a good few years after I was first introduced to it. I'm sure there are others here who will benefit from reading your post. I found it interesting to see someone who has had success with this, as I've wondered whether it was the diets/concepts that were flawed or whether it was simply not something that I was compatible with.

I hope your success continues.
It just proves, What works for one may not for another. But, it is worth a try to see.
01-19-2013, 04:42 AM   #6
UnXmas
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It just proves, What works for one may not for another. But, it is worth a try to see.
Absolutely. It's certainly worth trying. I think my problem was being unsuited to the things I was trying and going on too long without realising that.
01-19-2013, 07:58 AM   #7
UnXmas
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Have you ever tried avoiding fiber altogether? I take in almost zero fiber, I sometimes have constipation and take a little coconut oil to get things going.

Once every day or two I make a tonic, I heat up a cup of milk in the microwave until it's fairly hot, I mix a spoonful of honey, black strap molasses and coconut oil. It tastes very good, like sweetened milk, a bit less sweet than a milk shake, the oil and honey counter the bitterness of the molasses.

I too went to a nutritionist that tried to tell me to eat certain fibers and wanted an upper GI scan, I had just had one a month prior but he wanted a slightly different one and I was having none of it, the only thing I took away from it was to start taking a Centrum multi-vitamin, I knew from personal experience there are almost no fibers I can tolerate and I can sleep better at night constipated than with diarrhea.
I don't think I've ever cut out fibre completely. I haven't ever been constipated - I have the opposite problem, so maybe cutting out insoluble fibre as well would be something I could try some time. I'm not experimenting with diet for at least a while yet as my priority now is to gain weight in preperation for surgery so I'm concentrating just on getting in calories for the time being. Though actually your tonic sounds like it may help with that too!

It sounds like you are much better at knowing what works for you and what doesn't than I am (or than I used to be anyway).
01-19-2013, 04:34 PM   #8
InstantCoffee
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Do what you have to do, but remember calories going into you only result in weight gain if your intestines are healthy enough to absorb and digest them. I'm eating less calories now than I was but finally gaining weight because I'm absorbing it. I used to put about 3k cals down and get nothing from it because the protein drinks and stuff I was taking were making me sick and I had constant diarrhea.

Diarrhea is a bad cycle, it means you lose water and your body needs lots of water to digest calorie heavy food.
01-20-2013, 09:03 AM   #9
Beach
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Nice read! Thanks for sharing your success story.
01-29-2013, 12:39 AM   #10
john
 
Join Date: Jan 2013
true , the gluten is the root cause of most of digestive problems , i too left gluten about an year ago and i feel much better now , one more advice , sometime cow milk can also be harmful as most people who can not tolerate gluten are also prone to cow milk , i think your problem with skinned fruits seems more to do with the fiber then any other thing. why not get a upper GI test done , maybe that
01-29-2013, 12:42 AM   #11
john
 
Join Date: Jan 2013
i myself left gluten about an year ago and now i feel much better . most of the time people who can not tolerate gluten are also sensitive to cow`s milk , i advice avoiding that too. Soy or products containing soy also fall under the same category because all these protein molecules have similar structure so if you are sensitive to one of them, it is more likely that you would get affected by others too.
07-02-2017, 12:01 PM   #12
spob
 
Join Date: Jul 2017
Now that some time has past since this post, how are things going?
07-03-2017, 11:58 AM   #13
InstantCoffee
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I've been medication free since 2012ish. I haven't been able to verify my success with endoscopy or colonoscopy due to being cost prohibitive but my symptoms seem to be stable as long as I stick with my diet.

I've had some relapses that usually seem triggered by slipping into bad eating habits like too much sugar, too little fiber, experimenting with too many seasonings and former trigger foods.

I currently use psyllium husks to control my bile-acid diarrhea and as long as I take it before a meal I feel fine throughout the day.

Mostly eating meats seasoned with salt, parsley and some other light herbs, quinoa, rice, and I've been using ovaltine for calories and vitamins.

Blood work came back with no inflammation markers, no deficiencies, no anemia.

I'm having a test for SIBO done in August to see if it might explain my unusual symptoms, food sensitivities and general crohn's presentation.
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