Re: Thinking of terminating the diet

[Guest guest]

Hello All,What's to say that when one is newly diagnosed, they immediately go onto the diet and then experience a natural remission, but attribute it to the diet? Has anyone been on this diet for 10 years or so and can say that they've consistently experienced decreased s! ymptoms that can't be attributed to the natural cycle of the illness?Well I've been on for 1.7 years, and I know for a fact that my symptoms weregetting worse - and there was no reason to think they would be getting betterwithout more intense meds, since that was not the trajectory of my illness. And now, while not in remission, my symptoms are much better and mygeneral health is much, much better. I don't think it is the diet alone - I think it is the diet in combo with supplementsand yoga and other intense exercise and LDN. But the diet was the firstbase of that support system and very important in getting me there. Some other questions that I have: Perhaps this diet is good for getting rid of the extra bacteria in the GI tract. However, does that do anything to stop my immune system from attacking my colon? Yes, that's the whole point. The pathogenic bacteria manage to penetrate the barrier wall and it is at that point thatthe immune system attacks the colon, to keep them from penetrating the wall. http://www.hsph.harvard.edu/multimedia/video/2007/LaurieGlimcher/ Perhaps the bacteria is a defense mechanism that protects the tissue?The pathogenic bacteria that have mutated and overgrown and live in biofilms?We're not talking about acidophilus, which is community minded. No surprise, I'm experiencing a flare right now. I just wanted soft foods to eat, but all that was available to me at my home was fruit, vegetables, white beans, nuts, eggs, and meat. Not comfort foods and mostly things harsh on one's symptoms. I know that I can go back to chicken, chicken soup, and cooked carrots. But rice seems like it would be light on my system.I never liked rice, so I can't relate, but keep in mind cravings - particularly during a flare caused byan overgrowth of bacteria - can be caused by those same pathogenic bacteria influencingthe neural system in your gut to give them what they want so they can stay alive.

[Guest guest]

>

> > Hello All,

> > What's to say that when one is newly diagnosed, they immediately

go

> > onto the diet and then experience a natural remission, but

attribute

> > it to the diet? Has anyone been on this diet for 10 years or so

and

> > can say that they've consistently experienced decreased s!

ymptoms

> > that can't be attributed to the natural cycle of the illness?

>

> Well I've been on for 1.7 years, and I know for a fact that my

> symptoms were

> getting worse - and there was no reason to think they would be

getting

> better

> without more intense meds, since that was not the trajectory of my

> illness.

>

> And now, while not in remission, my symptoms are much better and my

> general health is much, much better.

>

> I don't think it is the diet alone - I think it is the diet in

combo

> with supplements

> and yoga and other intense exercise and LDN. But the diet was the

first

> base of that support system and very important in getting me there.

>

>

> >

> > Some other questions that I have: Perhaps this diet is good for

> > getting rid of the extra bacteria in the GI tract. However,

does

> > that do anything to stop my immune system from attacking my colon?

>

>

> Yes, that's the whole point. The pathogenic bacteria manage to

> penetrate the barrier wall and it is at that point that

> the immune system attacks the colon, to keep them from penetrating

the

> wall.

>

>

> http://www.hsph.harvard.edu/multimedia/video/2007/LaurieGlimcher/

>

> > Perhaps the bacteria is a defense mechanism that protects the

tissue?

>

>

> The pathogenic bacteria that have mutated and overgrown and live

in

> biofilms?

>

> We're not talking about acidophilus, which is community minded.

> > No surprise, I'm experiencing a flare right now. I just wanted

soft

> > foods to eat, but all that was available to me at my home was

fruit,

> > vegetables, white beans, nuts, eggs, and meat. Not comfort

foods

> > and mostly things harsh on one's symptoms. I know that I can go

> > back to chicken, chicken soup, and cooked carrots. But rice

seems

> > like it would be light on my system.

>

>

> I never liked rice, so I can't relate, but keep in mind cravings -

> particularly during a flare caused by

> an overgrowth of bacteria - can be caused by those same pathogenic

> bacteria influencing

> the neural system in your gut to give them what they want so they

can

> stay alive.

>

[Guest guest]

Hi -

Unfortunately, I think the long time SCDers have gotten well and are not on the listserv anymore. I spoke to Lucy Rosset from Lucy's Kitchen Shop while ordering supplies and she might be someone you could ask these questions of who told me she has been on the diet 16 years.

Heidi

Husband CD 16 years

SCD 11/08

To: BTVC-SCD From: emilyprince@...Date: Mon, 2 Mar 2009 18:28:05 +0000Subject: Thinking of terminating the diet

Hello All,

I in no way want to stir doubt in anyone's minds. I'm sorry if this email does this. I just really need some feedback at this point.

I've been grappling with some questions to which I cannot think of good answers. I'd value the feedback from this group. I have definitely seen some improvement with this diet, but have not had a complete remission yet. I haven't expected one yet though, as I've only been on the diet for 4 1/2 months.

I've had UC symptoms for approximately 11 years and have had an official diagnosis for approximately 6 years. Shortly after my dx and starting medication I had a complete remission. I was not on the diet at this time. This remission lasted 2-3 years. For some reason the idea just hit me the other day. If this diet is good for this illness, why did I go into remission yet eat all the things that I shouldn't have? My GI doctor told me years ago that there is no proof about diet, but said that I should certainly avoid anything that seemed to aggrivate it. He did mention that the illness will go on a natural increase and decrease in symptoms and periods of remission. What's to say that when one is newly diagnosed, they immediately go onto the diet and then experience a natural remission, but attribute it to the diet? Has anyone been on this diet for 10 years or so and can say that they've consistently experienced decreased symptoms that can't be attributed to the natural cycle of the illness?

Some other questions that I have: Perhaps this diet is good for getting rid of the extra bacteria in the GI tract. However, does that do anything to stop my immune system from attacking my colon? Perhaps the bacteria is a defense mechanism that protects the tissue?

No surprise, I'm experiencing a flare right now. I just wanted soft foods to eat, but all that was available to me at my home was fruit, vegetables, white beans, nuts, eggs, and meat. Not comfort foods and mostly things harsh on one's symptoms. I know that I can go back to chicken, chicken soup, and cooked carrots. But rice seems like it would be light on my system.

I value this listserv group and value your thoughts. I'm not going off the diet yet, but thinking about it. I have lost about 15 pounds on this diet, which I'm very happy about. I've finally gone from chunky to slendor and don't want to go back to chunky. I just appreciate your thoughts right now.

UC 11 years, dx for 6

On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

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[Guest guest]

At 12:28 PM 3/2/2009, you wrote:

Has anyone been on this diet for

10 years or so and can say that they've consistently experienced

decreased symptoms that can't be attributed to the natural cycle of the

illness?

,

I'm coming up on eight years on SCD. And the answer is, yes, I have

improvements that have nothing to do with a " natural cycle of

illness. "

Talk to Lucy, of Lucy's Kitchen Shop. She's been SCD for 15

years.

GIs always discredit diet as having any role in gut issues. After all, if

we go around healing ourselves, we are less likely to need them. Not only

that, most doctors get their current information from pharmaceutical

firms. While medications are useful and sometimes necessary, again, GI

medications are among the most profitable in the world. So if we go

healing ourselves with diet, their profits drop. Diet can't be

patented.

Rice is pure starch. Starch feeds the bacteria, and helps keep you sick.

No matter how " light " you think it might be, it's bad for

you.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

I think that's a perfectly natural question to be asking if you're having a flare. I've only been on the diet for 7 months and med free for 2 months but this is the first time I've ever been completely free of the D and bleeding. I hadn't been in total remission in over 15 years, even on meds, until this diet. I wouldn't throw out the baby with the bath water just yet, perhaps you're experiencing an allergy to something that is legally on the diet. How about trying the legal foods in a rotation diet to see if eliminating any particular food, eggs, or nuts or beans for example, helps. My real test of the diet is coming up because every spring for years I've had a serious flare-up, requiring hospitalization or complete bed rest, so I'll know for sure by June and let you know.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: None

To: BTVC-SCD <BTVC-SCD >Sent: Monday, March 2, 2009 7:28:05 PMSubject: Thinking of terminating the diet

Hello All,

I in no way want to stir doubt in anyone's minds.. I'm sorry if this email does this. I just really need some feedback at this point.

I've been grappling with some questions to which I cannot think of good answers. I'd value the feedback from this group. I have definitely seen some improvement with this diet, but have not had a complete remission yet. I haven't expected one yet though, as I've only been on the diet for 4 1/2 months.

I've had UC symptoms for approximately 11 years and have had an official diagnosis for approximately 6 years. Shortly after my dx and starting medication I had a complete remission. I was not on the diet at this time. This remission lasted 2-3 years. For some reason the idea just hit me the other day. If this diet is good for this illness, why did I go into remission yet eat all the things that I shouldn't have? My GI doctor told me years ago that there is no proof about diet, but said that I should certainly avoid anything that seemed to aggrivate it. He did mention that the illness will go on a natural increase and decrease in symptoms and periods of remission. What's to say that when one is newly diagnosed, they immediately go onto the diet and then experience a natural remission, but attribute it to the diet? Has anyone been on this diet for 10 years or so and can say that they've consistently

experienced decreased symptoms that can't be attributed to the natural cycle of the illness?

Some other questions that I have: Perhaps this diet is good for getting rid of the extra bacteria in the GI tract. However, does that do anything to stop my immune system from attacking my colon? Perhaps the bacteria is a defense mechanism that protects the tissue?

No surprise, I'm experiencing a flare right now. I just wanted soft foods to eat, but all that was available to me at my home was fruit, vegetables, white beans, nuts, eggs, and meat. Not comfort foods and mostly things harsh on one's symptoms. I know that I can go back to chicken, chicken soup, and cooked carrots. But rice seems like it would be light on my system.

I value this listserv group and value your thoughts. I'm not going off the diet yet, but thinking about it. I have lost about 15 pounds on this diet, which I'm very happy about. I've finally gone from chunky to slendor and don't want to go back to chunky. I just appreciate your thoughts right now.

UC 11 years, dx for 6

On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

[Guest guest]

I've been on SCD for just over 5 years, and have had my functional digestive disorders under good management for 3 years. Thank goodness. My doctors are amazed at how well I have managed my upper GI symptoms, as most folks with my particular disorder (Sphincter of Oddi dysfunction) usually require pain management and can't work and have a much harder time.

The first two years on SCD was tough, lots of fluctuations and symptom flares. All part of detoxing and healing and learning what my digestion would tolerate and what it wouldn't. My choice to stay on SCD was based on there not being any other alternative (tried them) and I felt enough small improvements in between symptom flares that I remained motivated.

You also reach a level of acceptance. At least I did since my digestive disorders are functional and I know I can't achieve remission or cure, just symptom management.

Unfortunately I've also gone on to develop neurological conditions, as my nervous system is slowly deteriorating. I certainly don't blame my diet or expect eating healthy to fix everything. Having neuromuscular issues is just the way things have turned out. As long as my digestion remains stable I can cope.

Kim M.

SCD 5 years

[Guest guest]

>

>

>

> Hello All,

>

>

>

> I in no way want to stir doubt in anyone's minds.  I'm sorry if

this email does this.  I just really need some feedback at this

point.

>

>

>

> I've been grappling with some questions to which I cannot think of

good answers.  I'd value the feedback from this group.  I have

definitely seen some improvement with this diet, but have not had a

complete remission yet.  I haven't expected one yet though, as I've

only been on the diet for 4 1/2 months.

>

>

>

> I've had UC symptoms for approximately 11 years and have had an

official diagnosis for approximately 6 years.  Shortly after my dx

and starting medication I had a complete remission.  I was not on

the diet at this time.  This remission lasted 2-3 years.  For some

reason the idea just hit me the other day.  If this diet is good for

this illness, why did I go into remission yet eat all the things that

I shouldn't have?  My GI doctor told me years ago that there is no

proof about diet, but said that I should certainly avoid anything

that seemed to aggrivate it.  He did mention that the illness will

go on a natural increase and decrease in symptoms and periods of

remission.  What's to say that when one is newly diagnosed, they

immediately go onto the diet and then experience a natural remission,

but attribute it to the diet?  Has anyone been on this diet for 10

years or so and can say that they've consistently experienced

decreased symptoms that can't be attributed to the natural cycle of

the illness?

>

>

>

> Some other questions that I have:  Perhaps this diet is good for

getting rid of the extra bacteria in the GI tract.  However, does

that do anything to stop my immune system from attacking my colon? 

Perhaps the bacteria is a defense mechanism that protects the tissue?

>

>

>

> No surprise, I'm experiencing a flare right now.  I just wanted

soft foods to eat, but all that was available to me at my home was

fruit, vegetables, white beans, nuts, eggs, and meat.  Not comfort

foods and mostly things harsh on one's symptoms.  I know that I can

go back to chicken, chicken soup, and cooked carrots.  But rice

seems like it would be light on my system.

>

>

>

> I value this listserv group and value your thoughts.  I'm not

going off the diet yet, but thinking about it.  I have lost about 15

pounds on this diet, which I'm very happy about.  I've finally gone

from chunky to slendor and don't want to go back to chunky.  I just

appreciate your thoughts right now.

>

>

>

> UC 11 years, dx for 6

>

> On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

> Hi! I have had Crohn's for 10 years and have been on the SC diet

for 14 months. My recent colonoscopy showed active ulcers I

visited a doctor who specializes in treating conditions thru diet. He

agreed that the food we do not eat on the SC diet is important to

avoid, but it would be better to add in WAY more veggies. He

recommemnded a mainly plant based diet to me. I began making green

juice, green smooties (whole veggies blended), steamed veggies, and

pureed soups. I have really noticed a diffence. I felt much better

when I started the SC diet, but know I feel like I have taken my

health up another notch. Because the veggies I eat are pureed, or

steamed I can digest them easily. And I guess eating all this green

matter will feed the friendly bacteria in my gut. It made sense to

me. We have all been told to eat more fruits and vaggies. The doctor

made it seem that if I follow his plan my next colonoscopy in 6

months should show alot of improvement.

[Guest guest]

,

I have been on SCD for 5 years now. I am currently doing marvelously

well with the Diet AND environmental controls. However, I had a

severe case and my benefits were a process a long and frustrating

process that involved major trial and error of years......I made a

lot of mistakes......and it took a while to figure other things out.

I wanted to mention that I have strayed at times from SCD and paid

for it each time. Many times the act of going off the diet is one of

a slippery slope and soon you have all the additives back in, or you

think you can tolerate the item the first time until you have had it

4 in a row and then you get symptoms........

I never strayed too far because I could see it was good to prepare

our own food, and could not justify it in the end as anything other

than personal whining on my part.

We are raised in a culture where food is for reward not

nourishment.....this is a psychological aspect to going on SCD that

is rarely addressed but is just as real of an issue as giving up the

foods themselves..

A couple of other points. 1) at three months or so it is common to

have a die-off flare. No one knows why but it is actually expected

around here.

2) Elaine's daughter tried rice (illegal) after many years on SCD and

no symptoms. It made her bleed. To my understanding she avoids it

even today, though she has added some illegals back in occasioanlly

as an adult.

3)from my own experience, I would encourage you to check the pollen

levels in your area at pollen.com. This is off topic but was crucial

in my achieving a continued remission. I needed the diet AND help for

hidden pollen allergies......I did not get a runny nose or itchy

eyes.....instead I bleed from pollen allergies.

4) You can be totally SCD and be eating a food that is legal that you

are sensitive to. I was sensitive to tomatoes, pork, seafood, onions,

garlic and most spices and yes Chicken! I still cringe when everyone

is always advised to go back to the chicken soup because it does not

work for all of us. However, if you had asked me at 4 1/2 months I

would have sworn I had no food sensitivities. I really thought that I

did not. I suffered many flairs in figuring out all the ins and outs

of exactly what I could or could not do.

Also, for me, artificial fragrance triggers the " d " of UC. It was

masked to me because it was embedded in everything we owned. Once I

shed artificial fragrance in our home, I improved a lot.

That said, what do you want to add that you truly think will help? I

never truly felt I could go back from SCD....only forward.....fine

tuning it and figuring out more triggers besides the illegal foods.

Each time I tried to cheat I got myself in quite a pickle and it

never helped me personally.

I always hope someone who is not as pigheaded as me can learn from my

mistakes....instead of having to go through them themselves, so I

share....though I have not been reading this list as carefully any

longer and have moved on in a way.

Also, I did eventually have to bounce back and forth between flagyl

and prednisone for a while to get help for what I believe was c diff.

Once that was resolved, I have been med free and mostly symptoms free

except during cedar pollen season for almost 2 years now.

Hope something here helps. Michele

> >Has anyone been on this diet for 10 years or so

> >and can say that they've consistently

> >experienced decreased symptoms that can't be

> >attributed to the natural cycle of the illness?

[Guest guest]

wow thanks for sharing

eileen

> > >Has anyone been on this diet for 10 years or so

> > >and can say that they've consistently

> > >experienced decreased symptoms that can't be

> > >attributed to the natural cycle of the illness?

>

[Guest guest]

wow thanks for sharing

eileen

> > >Has anyone been on this diet for 10 years or so

> > >and can say that they've consistently

> > >experienced decreased symptoms that can't be

> > >attributed to the natural cycle of the illness?

>

[Guest guest]

I've had a busy few days and haven't checked email for several days. I want to thank each of you for your very thoughtful responses! Each one had something that I needed to hear. I will stick to the diet because the alternative, adding in stuff that I know isn't too good for me, doesn't make any sense. The psychological aspect of wanting to somehow control this (the UC) is strong for me right now. One response mentioned developing a certain level of acceptance. I can definitely say that I've had some small improvements. If I went off the diet, I wouldn't even have those small victories. But I am finding it hard to accept what is "normal" for me. I am keeping these emails to reread when the going gets tough again! Someone mentioned that the goal is symptom management, not necessary remission, or that remission may not be a logical outcome. For some reason I expect perfect health and feel cheated somehow. It is comforting to know that others have experienced these obstacles and made it through. It sounds like 4 1/2 months is really early to be forming any hard and fast opinions about the diet. I know that I need to give it at least several years. Thank you for helping me not fall off the wagon! I can't thank you enough.SCD 4.5 monthsUC dx for 6 yrswow thanks for sharing

eileen

>

> ,

>

> I have been on SCD for 5 years now. I am currently doing marvelously

> well with the Diet AND environmental controls. However, I had a

> severe case and my benefits were a process a long and frustrating

> process that involved major trial and error of years......I made a

> lot of mistakes......and it took a while to figure other things out.

>

> I wanted to mention that I have strayed at times from SCD and paid

> for it each time. Many times the act of going off the diet is one of

> a slippery slope and soon you have all the additives back in, or you

> think you can tolerate the item the first time until you have had it

> 4 in a row and then you get symptoms........

>

> I never strayed too far because I could see it was good to prepare

> our own food, and could not justify it in the end as anything other

> than personal whining on my part.

>

> We are raised in a culture where food is for reward not

> nourishment.....this is a psychological aspect to going on SCD that

> is rarely addressed but is just as real of an issue as giving up the

> foods themselves..

>

> A couple of other points. 1) at three months or so it is common to

> have a die-off flare. No one knows why but it is actually expected

> around here.

> 2) Elaine's daughter tried rice (illegal) after many years on SCD and

> no symptoms. It made her bleed. To my understanding she avoids it

> even today, though she has added some illegals back in occasioanlly

> as an adult.

> 3)from my own experience, I would encourage you to check the pollen

> levels in your area at pollen.com. This is off topic but was crucial

> in my achieving a continued remission. I needed the diet AND help for

> hidden pollen allergies......I did not get a runny nose or itchy

> eyes.....instead I bleed from pollen allergies.

> 4) You can be totally SCD and be eating a food that is legal that you

> are sensitive to. I was sensitive to tomatoes, pork, seafood, onions,

> garlic and most spices and yes Chicken! I still cringe when everyone