RE: OT-SCD, Relatives and CD

[Guest guest]

Actually I don't brag about it since most say food has nothing to do with it and I've been banned from a couple o' places for talking 'diet' along with a few others. 

 

On FB, I have the 'taking steps for IBD' on my profile but that could be for a relative, friend or someone you really care about--not necessarily you.  I always assume someone knows someone with breast cancer, not that they've had it.

 

So you don't think it's genetic? 

 

I just wanted feedback, not a big deal. 

 

Debbie thx!

 

I wouldn't worry about it. Genetic???  You know it's something like 35% of cases have a family member (close OR distant) someplace that has the same disease or similar. That leaves 65% of people with this disease having ZERO family anywhere with the disease. Common sense would tell you it's not.

I think it all depends on how comfortable you are about it. Personally I would tell them, brag about how i'm taking a proactive approach to healing myself instead of nodding my head yes at what people tell me to do to " save " my intestines.

It's really up to you.   If that happened to me they would know already because i'm a fan of ucvlog on facebook Wouldn't take a genius to put 2 and 2 together.-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.

Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.

To: list@...; BTVC-SCD From: texdebl@...

Date: Thu, 25 Mar 2010 18:44:22 -0500Subject: OT-SCD, Relatives and CD 

I was recently 'found' by a much younger cousin on FB.  She lives in a nother state,  What are the 'rules' as far as telling a relative about cd or uc or celiac in case it is genetic?  As far as I know, I'm the only one with this dx even though some of the elders had very similar symptoms over the years. 

 

I guess the one concern is she sent me an invite to a weight loss group ;-).  Acai berry or something crazy.  I don't think she's even overweight.

 

Thanks for any input.  I doubt I'll mention it but would you?

 

Debbie 40 cd

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[Guest guest]

I think "IBD" is a very broad classification for things nobody understands. 50 years ago there was no ulcerative colitis, it was only Crohn's disease, and everybody had it wether you had UC or Crohn's. Now, there are 2 seperate diseases where there used to be only one. Nobody in my entire family history has ever had IBD, i'm the lucky first. So, I don't think it's genetic at all. If 60% of people had a relative then i'd consider it in some cases, but 30-35%? That's awfully low when all things are considered. Look at it this way, would you do SCD if it's success rate was 35% knowing how hard it is? I wouldn't..... -UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.To: BTVC-SCD From: texdebl@...Date: Thu, 25 Mar 2010 21:10:39 -0500Subject: Re: OT-SCD, Relatives and CD

Actually I don't brag about it since most say food has nothing to do with it and I've been banned from a couple o' places for talking 'diet' along with a few others.

On FB, I have the 'taking steps for IBD' on my profile but that could be for a relative, friend or someone you really care about--not necessarily you. I always assume someone knows someone with breast cancer, not that they've had it.

So you don't think it's genetic?

I just wanted feedback, not a big deal.

Debbie thx!

On Thu, Mar 25, 2010 at 7:19 PM, T <scdguy26 (AT) hotmail (DOT) com> wrote:

I wouldn't worry about it. Genetic??? You know it's something like 35% of cases have a family member (close OR distant) someplace that has the same disease or similar. That leaves 65% of people with this disease having ZERO family anywhere with the disease. Common sense would tell you it's not.

I think it all depends on how comfortable you are about it. Personally I would tell them, brag about how i'm taking a proactive approach to healing myself instead of nodding my head yes at what people tell me to do to "save" my intestines.

It's really up to you. If that happened to me they would know already because i'm a fan of ucvlog on facebook Wouldn't take a genius to put 2 and 2 together.-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.

Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.

To: list (AT) scdiet (DOT) net; BTVC-SCD From: texdebl (AT) gmail (DOT) com

Date: Thu, 25 Mar 2010 18:44:22 -0500Subject: OT-SCD, Relatives and CD

I was recently 'found' by a much younger cousin on FB. She lives in a nother state, What are the 'rules' as far as telling a relative about cd or uc or celiac in case it is genetic? As far as I know, I'm the only one with this dx even though some of the elders had very similar symptoms over the years.

I guess the one concern is she sent me an invite to a weight loss group ;-). Acai berry or something crazy. I don't think she's even overweight.

Thanks for any input. I doubt I'll mention it but would you?

Debbie 40 cd

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[Guest guest]

Yah because at the time I started, I was on an endless pred roller coaster, losing 3/4 of very thick hair, they put me on Imuran and I was already taking 16 pentasa per day.  I also had a hospital stay where I had a blood transfusion and they pumped me full of steroids which caused a rash they had to biopsy and I couldn't bend over to catch my kitten without toppling over.

 

Learning to make yogurt was intimidating but I think it actually took all the above plus some to get me to try the diet.  This one person named Curly kept finding me somehow asking me if I had given it a go yet.  I didn't cook.  Thought there was 'no way...' I could do this.  I felt small positive changes from the get.  Nothing is perfect, I try to go off when I'm better but each time, it's harder to stay strict and it's harder to get back to where you left off.

 

:My family just didn't talk about 'those things' anyway.  But I agree, I probably won't mention it since 'we' are the lucky ones lol.  The two firsts to have an IBD out of everyone.

 

Debbie 40 cd

 

I think " IBD " is a very broad classification for things nobody understands. 50 years ago there was no ulcerative colitis, it was only Crohn's disease, and everybody had it wether you had UC or Crohn's. Now, there are 2 seperate diseases where there used to be only one. 

Nobody in my entire family history has ever had IBD, i'm the lucky first.  So, I don't think it's genetic at all. If 60% of people had a relative then i'd consider it in some cases, but 30-35%? That's awfully low when all things are considered. 

Look at it this way, would you do SCD if it's success rate was 35% knowing how hard it is?  I wouldn't..... 

-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.

To: BTVC-SCD From: texdebl@...Date: Thu, 25 Mar 2010 21:10:39 -0500

Subject: Re: OT-SCD, Relatives and CD

 

Actually I don't brag about it since most say food has nothing to do with it and I've been banned from a couple o' places for talking 'diet' along with a few others. 

 

On FB, I have the 'taking steps for IBD' on my profile but that could be for a relative, friend or someone you really care about--not necessarily you.  I always assume someone knows someone with breast cancer, not that they've had it.

 

So you don't think it's genetic? 

 

I just wanted feedback, not a big deal. 

 

Debbie thx!

 

I wouldn't worry about it. Genetic???  You know it's something like 35% of cases have a family member (close OR distant) someplace that has the same disease or similar. That leaves 65% of people with this disease having ZERO family anywhere with the disease. Common sense would tell you it's not.

I think it all depends on how comfortable you are about it. Personally I would tell them, brag about how i'm taking a proactive approach to healing myself instead of nodding my head yes at what people tell me to do to " save " my intestines.

It's really up to you.   If that happened to me they would know already because i'm a fan of ucvlog on facebook Wouldn't take a genius to put 2 and 2 together.-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.

Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.

To: list@...; BTVC-SCD From: texdebl@...

Date: Thu, 25 Mar 2010 18:44:22 -0500Subject: OT-SCD, Relatives and CD 

I was recently 'found' by a much younger cousin on FB.  She lives in a nother state,  What are the 'rules' as far as telling a relative about cd or uc or celiac in case it is genetic?  As far as I know, I'm the only one with this dx even though some of the elders had very similar symptoms over the years. 

 

I guess the one concern is she sent me an invite to a weight loss group ;-).  Acai berry or something crazy.  I don't think she's even overweight.

 

Thanks for any input.  I doubt I'll mention it but would you?

 

Debbie 40 cd

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[Guest guest]

>

>

> Actually I don't brag about it since most say food has nothing to do with it

and I've been banned from a couple o' places for talking 'diet' along with a few

others.

>

> On FB, I have the 'taking steps for IBD' on my profile but that could be for a

relative, friend or someone you really care about--not necessarily you. I

always assume someone knows someone with breast cancer, not that they've had it.

>

> So you don't think it's genetic?

I think it is genetic.

I don't know if it always is - I guess the right cocktail of drugs can produce

these things too - but then there's always the possibility that they are also

working on someone who had the genetic potential to develop this at the

margins, and drugs boomeranged that potential all the way home.

There are definitely genetic aspects of it - though also environmental.

Mara

[Guest guest]

I think "IBD" is a very broad classification for things nobody understands. 50 years ago there was no ulcerative colitis, it was only Crohn's disease, and everybody had it wether you had UC or Crohn's. Now, there are 2 seperate diseases where there used to be only one. That's neither here nor there; it just means we can classify pathologies morenarrowly. And even with those more narrowed parameters, some peopleseem to fall between both Crohn's and colitis, for a double diagnosis,and are a bit indeterminate. Nobody in my entire family history has ever had IBD, i'm the lucky first. In so far as you know. How far back are you talking? Also,they could have existed as recessive genes, just passed onwithout manifesting. So, I don't think it's genetic at all. If 60% of people had a relative then i'd consider it in some cases, but 30-35%? That's awfully low when all things are considered. , It definitely can be genetic - they've found genes for it - not the whole spread yet, but certain genes. And in mice they've given UC to, the mice lack the peacekeeper genein their gut, which is the reason their guts don't function normally and theyare more prone to getting build ups of pathogenic bacteria which breachthe cell barriers, which causes the immune system to attack itself to keepthem out. Mara

[Guest guest]

Very interesting. I didn't know all of that. I guess it could be like cholesterol or high blood pressure.... some people are just genetic even though they have a good diet.-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.To: BTVC-SCD From: alcibiades@...Date: Thu, 25 Mar 2010 23:02:13 -0400Subject: Re: OT-SCD, Relatives and CD

I think "IBD" is a very broad classification for things nobody understands. 50 years ago there was no ulcerative colitis, it was only Crohn's disease, and everybody had it wether you had UC or Crohn's. Now, there are 2 seperate diseases where there used to be only one. That's neither here nor there; it just means we can classify pathologies morenarrowly. And even with those more narrowed parameters, some peopleseem to fall between both Crohn's and colitis, for a double diagnosis,and are a bit indeterminate. Nobody in my entire family history has ever had IBD, i'm the lucky first. In so far as you know. How far back are you talking? Also,they could have existed as recessive genes, just passed onwithout manifesting. So, I don't think it's genetic at all. If 60% of people had a relative then i'd consider it in some cases, but 30-35%? That's awfully low when all things are considered. , It definitely can be genetic - they've found genes for it - not the whole spread yet, but certain genes. And in mice they've given UC to, the mice lack the peacekeeper genein their gut, which is the reason their guts don't function normally and theyare more prone to getting build ups of pathogenic bacteria which breachthe cell barriers, which causes the immune system to attack itself to keepthem out. Mara

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