Re: doctor's reaction to SCD

March 1, 2010

WOW, your story sounds unbelievable...cant believe you had to go thru all

that...I hope all goes well with your temporary illeostomy removal and that you

completely recover.

I'm amazed by your results on scd and find it so encouraging. did you have any

problems while pregnant? Also, are you fully on the scd or do you still restrict

certain foods? Are you able to eat the more advanced foods such as coconut?

dried fruits? peanut butter?

If so, were you always tolerating them or did you only tolerate them in later

stages of the diet? One more question, did you see results right away and if so

how long did it take till you felt that your body was in remission?

Thanx and sorry for the bombardment of questions...Becky

>

> When I first started the SCD (about 3 and 1/2 years ago) many GI doctors and

surgeons who I met were all very skeptical. They said I had a very severe case

of Crohn's Disease (several surgeries and hospitalizations) and that I should be

on medicine for the rest of my life. However, after watching me progress for

over three years in complete remission and 100% drug free, they were stunned.

> Unfortunately I recently suffered major complications due to a C section last

March. Massive scarring and adhesions lead to a 4 hour surgery and a temporary

ileostomy. After working so hard to keep my intestines in tip top shape, it was

very disheartening to lose small intestine to a non-Crohn's related surgical

complication.

> HOWEVER, the doctors were stunned when they scoped my colon and small

intestines and told me that through all of this (ileostomy, reversal, major

illness, etc) there is STILL no sign of Crohn's and that, in fact, the inside of

my intestines looked unbelievable. His exact words were " when we scoped you it

was clear that your not on a typical American diet. It looks like you eat all

nuts and berries. "

> The same doctors who were discouraging me from SCD a few years ago are now my

biggest cheerleaders and encouraging me " not to change my diet. "

> So don't lose hope. You are right. SCD works. I am sure of it.

> Jill

>

> To: BTVC-SCD

> From: s.kurtz@...

> Date: Sun, 28 Feb 2010 04:54:36 +0000

> Subject: doctor's reaction to SCD

>

> I apologize for how long-winded this is. I am just so frustrated by the

complete non-supportive attitude that exists in the medical community. They were

both looking at me like I was a little nutty for even considering the diet at

all.

>

> Please share your thoughts.

>

> Sherry

>

> mom to 17 CD

>

> dx Aug. 09

>

> _________________________________________________________________

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March 1, 2010

At 07:49 AM 3/1/2010, you wrote:

The same doctors who were

discouraging me from SCD a few years ago are now my biggest cheerleaders

and encouraging me " not to change my diet. " So don't lose

hope. You are right. SCD works. I am sure of it.

Jill,

Wow! What a story!

But you're right! SCD works!

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

March 1, 2010

At 07:49 AM 3/1/2010, you wrote:

The same doctors who were

discouraging me from SCD a few years ago are now my biggest cheerleaders

and encouraging me " not to change my diet. " So don't lose

hope. You are right. SCD works. I am sure of it.

Jill,

Wow! What a story!

But you're right! SCD works!

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

March 3, 2010

The problem with conventional medical doctors is that they have next to no nutritional training in med school. They really don't know much or anything about nutritional or diet therapies. When I was diagnosed with UC back in 2004 my doctor told me that diet had nothing to do with it and that I should eat only soft bland foods - rice, white bread, crackers, etc - and avoid fruits and vegetables as they were too "rough". Basically, it was a direct contradiction to what I later found out really worked - the SCD. I've been symptom free and med free within months of being on the diet.If you haven't already seen it, there is a great movie about healing disease through diet called Food Matters. It does a great job explaining how conventional medical doctors really have no nutritional background or training, and how the medical system is set up to promote pharmaceutical drugs because it's a big business and that's how they make money. Here is a link to it. I highly recommend it. It would really help your son understand what's going on and how the system works.Food Matters Movie >> Hi all,> > I just wanted to share that I had to take my son in to his GI for a follow-up. The 6MP was not helping and we needed to discuss what was going to happen next. I mentioned that we had started the diet this past Sunday, how his symptoms had improved, etc. He did not really respond or ask questions. The only thing he could focus on was my son's weight loss and that he didn't look to happy to be on the diet (which he isn't so much but was doing it) and had the nerve to say, "Who's idea was this yours or your folks?" I went on to say that the diet made sense to me and that people have had success. The fellow who was in the room said, "Well, the people will get on there and give their testimony about how well the diet worked for them then they have a relapse and you never get to read about that." This was all being said in front of my son who is hanging on to the diet by his fingernails, not really wanting to do it but willing to try. So, it ended with them discussing the fact that has lost quite a bit of weight and they have to do something to get the disease under control. We got the speech about Remicade and my son (who is almost 18) said that he doesn't think he can do the diet and wants to try the R. I just started crying right there in the office. I am so sad and aggravated. I just do not know how I can reason with him. Reason is on my side and this drug is just "management" with zero healing taking place. > I apologize for how long-winded this is. I am just so frustrated by the complete non-supportive attitude that exists in the medical community. They were both looking at me like I was a little nutty for even considering the diet at all.> Please share your thoughts.> > Sherry> mom to 17 CD> dx Aug. 09>

March 3, 2010

The problem with conventional medical doctors is that they have next to no nutritional training in med school. They really don't know much or anything about nutritional or diet therapies. When I was diagnosed with UC back in 2004 my doctor told me that diet had nothing to do with it and that I should eat only soft bland foods - rice, white bread, crackers, etc - and avoid fruits and vegetables as they were too "rough". Basically, it was a direct contradiction to what I later found out really worked - the SCD. I've been symptom free and med free within months of being on the diet.If you haven't already seen it, there is a great movie about healing disease through diet called Food Matters. It does a great job explaining how conventional medical doctors really have no nutritional background or training, and how the medical system is set up to promote pharmaceutical drugs because it's a big business and that's how they make money. Here is a link to it. I highly recommend it. It would really help your son understand what's going on and how the system works.Food Matters Movie >> Hi all,> > I just wanted to share that I had to take my son in to his GI for a follow-up. The 6MP was not helping and we needed to discuss what was going to happen next. I mentioned that we had started the diet this past Sunday, how his symptoms had improved, etc. He did not really respond or ask questions. The only thing he could focus on was my son's weight loss and that he didn't look to happy to be on the diet (which he isn't so much but was doing it) and had the nerve to say, "Who's idea was this yours or your folks?" I went on to say that the diet made sense to me and that people have had success. The fellow who was in the room said, "Well, the people will get on there and give their testimony about how well the diet worked for them then they have a relapse and you never get to read about that." This was all being said in front of my son who is hanging on to the diet by his fingernails, not really wanting to do it but willing to try. So, it ended with them discussing the fact that has lost quite a bit of weight and they have to do something to get the disease under control. We got the speech about Remicade and my son (who is almost 18) said that he doesn't think he can do the diet and wants to try the R. I just started crying right there in the office. I am so sad and aggravated. I just do not know how I can reason with him. Reason is on my side and this drug is just "management" with zero healing taking place. > I apologize for how long-winded this is. I am just so frustrated by the complete non-supportive attitude that exists in the medical community. They were both looking at me like I was a little nutty for even considering the diet at all.> Please share your thoughts.> > Sherry> mom to 17 CD> dx Aug. 09>

March 4, 2010

Sherry,

I'm with you....My doctor said in front of my son, " Don't make it (the diet) a

religion, " and spoke of the harm it could do to our whole family in terms of a

major lifestyle change. He also said he believes " low sugar is good for

everyone, but I don't know about 'no sugar' " . My ten year old quickly picked up

on that one! So, it's Mom vs. The Doctor. What's a little tike to do? At age

10, I am still the greatest thing since sliced SCD bread. (Not so sure what he

will think of me at 17!)

Unfortunately, our doctor is the only ped GI in town. I'm considering going

back to our old doctor who is now 5 hours away. He wouldn't recommend the diet

simply because there are no studies, but he at least would NEVER have bucked me

in front of my child. A lot of it is simply ignorance and lack of training in

nutrition, so I try to not get too " out done " about it. For example, after

explaining that I make my own yogurt, only feed him monosaccaride sugars, etc.,

I said that my son drinks yogurt smoothies everyday. His reply was " those are

loaded with sugar. " So I repeated that I make the smoothies myself, blah, blah,

blah....no response.

After my son's labs started to come back normal, he was looking at his file

scratching his head wondering why the labs were all of a sudden normal. I

reminded him that my son is on the SCD diet. He would not acknowledge the diet

one bit....

O.K. I'm starting to get riled up now thinking about this, so I have to quit.

But, I understand what you're going through. I'm wondering if maybe some

doctors are intimidated by parents like us.....

Next visit, I may ask my child to step out of the room while I talk to him.

I truly believe that my son sticks to the diet in social situations because he

feels better now that he's on it. He still complains from time to time, but

unless he's snowing me, I don't think he cheats when I'm not around. I know

that's got to be harder for you with a 17 year old.... Also, I give my son many

incentives and prizes on a monthly basis. Don't know if this would work for

your 17 year old. You could let him stay out later, link compliance to the diet

to driving priveleges, reward him with equipment for whatever hobbies he has,

gym membership, etc. I also made a deal with my son that it would only be for a

year (since he was already visibly healed by the Remicade) and tried to show him

that a year of his life on SCD in the big picture is not really that much. I

should have said two years. We'll see what happens. He may want to just stay on

it by that time. I know for certain that at least at home, we will never go

back to eating the way we used to eat.

Michele

10 year old son, Crohn's

Remicade 2 years, SCD 8 mos.

> >

> > Hi all,

> >

> > I just wanted to share that I had to take my son in to his GI for a

> follow-up. The 6MP was not helping and we needed to discuss what was

> going to happen next. I mentioned that we had started the diet this past

> Sunday, how his symptoms had improved, etc. He did not really respond or

> ask questions. The only thing he could focus on was my son's weight loss

> and that he didn't look to happy to be on the diet (which he isn't so

> much but was doing it) and had the nerve to say, " Who's idea was this

> yours or your folks? " I went on to say that the diet made sense to me

> and that people have had success. The fellow who was in the room said,

> " Well, the people will get on there and give their testimony about how

> well the diet worked for them then they have a relapse and you never get

> to read about that. " This was all being said in front of my son who is

> hanging on to the diet by his fingernails, not really wanting to do it

> but willing to try. So, it ended with them discussing the fact that

> has lost quite a bit of weight and they have to do something to get the

> disease under control. We got the speech about Remicade and my son (who

> is almost 18) said that he doesn't think he can do the diet and wants to

> try the R. I just started crying right there in the office. I am so sad

> and aggravated. I just do not know how I can reason with him. Reason is

> on my side and this drug is just " management " with zero healing taking

> place.

> > I apologize for how long-winded this is. I am just so frustrated by

> the complete non-supportive attitude that exists in the medical

> community. They were both looking at me like I was a little nutty for

> even considering the diet at all.

> > Please share your thoughts.

> >

> > Sherry

> > mom to 17 CD

> > dx Aug. 09

> >

>

March 4, 2010