Re: Eileen: Celiac and returning to normal diet

[Guest guest]

On Tue, 06 Oct 2009 16:39:36 -0400, Genevieve Carroll

genevievecarroll2003@...> wrote:

> What you have heard is correct Eileen.

> There has been some progress with certain allergies abating over time in

> certain people under medical supervision.

> Celiac disease is not an allergy. It is an auto-immune problem for

> certain people who are genetically predisposed to it. It is a " forever "

> condition.

It is only if you believe that auto-immune conditions are not

reversible/healable. But they are. (For starters, take LDN.) I could give

you a list of names of people who are living proof of it -- and put me on

that list as well.

> For the present, a celiac diagnosis is for life

Yes, it is in among those who practice conventional medicine. BUt they've

been known to be -- and often are -- wrong. A lot of here have experienced

that (and some of us many times).

n

[Guest guest]

On Tue, 06 Oct 2009 16:39:36 -0400, Genevieve Carroll

genevievecarroll2003@...> wrote:

> What you have heard is correct Eileen.

> There has been some progress with certain allergies abating over time in

> certain people under medical supervision.

> Celiac disease is not an allergy. It is an auto-immune problem for

> certain people who are genetically predisposed to it. It is a " forever "

> condition.

It is only if you believe that auto-immune conditions are not

reversible/healable. But they are. (For starters, take LDN.) I could give

you a list of names of people who are living proof of it -- and put me on

that list as well.

> For the present, a celiac diagnosis is for life

Yes, it is in among those who practice conventional medicine. BUt they've

been known to be -- and often are -- wrong. A lot of here have experienced

that (and some of us many times).

n

[Guest guest]

marian

do you have celiac?? will you return after scd? just curious - i'll have to let

the future answer this one, but since i don't miss it - why return - at least

for me

thanks Eileen

>

> > What you have heard is correct Eileen.

> > There has been some progress with certain allergies abating over time in

> > certain people under medical supervision.

> > Celiac disease is not an allergy. It is an auto-immune problem for

> > certain people who are genetically predisposed to it. It is a " forever "

> > condition.

>

> It is only if you believe that auto-immune conditions are not

> reversible/healable. But they are. (For starters, take LDN.) I could give

> you a list of names of people who are living proof of it -- and put me on

> that list as well.

>

>

> > For the present, a celiac diagnosis is for life

>

> Yes, it is in among those who practice conventional medicine. BUt they've

> been known to be -- and often are -- wrong. A lot of here have experienced

> that (and some of us many times).

>

> n

>

[Guest guest]

> marian> do you have celiac?? will you return after scd? just curious - i'll > have to let the future answer this one, but since i don't miss it - why > return - at least for me> thanks Eileen>Hi Eileen,No, I've had Crohn's for 30 years (and several other wacked-out immune system conditions). I've had two small-bowel resections re: the Crohn's.Yes, I would certainly return to eating some of what I ate previously if or when I could. Not white sugar (I didn't have a sweet tooth), though I certianly wish I could eat molasses and brown sugar -- it's very hard to duplicate the taste of those in, say, BBQ sauce, or topping for almond flour coffee cake! I'd eat whole grain breads, if I could; and real pasta (I'm an Italian food freak), and certainly the 70% cocoa dark chocolate (more bitter than sweet) which I delighted in.I don't think about not eating that stuff, normally. But I do miss it periodically, sometimes intensely. Interestingly, that said, the worst "attacks" of remorse over food I've had have been at local festivals where there are food stands up and down the streets. You know the kind, where they sell fried dough, kettle corn, Italian rice balls with sauce, barbacued pulled pork, pizza, caramel appels, etc. (Sorry!) And I didn't even normally eat that kind of stuff very often. It's the food smells more than the taste memory, I think, that got to me.I'm enjoying being thin (but am too thin now) and feeling much better. And I'm enjoying what I now eat. But despite the variety possible on SCD, it does get boring at times, I find. And is so time consuming.  When one works every day (even if from a home office most of the time), spending so many hours in food preparation (even when you like to cook/bake, as I do) gets tedious periodically. (I deeply sympathize with those of you who also have young children to care for -- the children are a gift, of course; but I mean because you have so much work to do to keep an entire family fed -- and happy with what they're being fed!) n

[Guest guest]

> marian> do you have celiac?? will you return after scd? just curious - i'll > have to let the future answer this one, but since i don't miss it - why > return - at least for me> thanks Eileen>Hi Eileen,No, I've had Crohn's for 30 years (and several other wacked-out immune system conditions). I've had two small-bowel resections re: the Crohn's.Yes, I would certainly return to eating some of what I ate previously if or when I could. Not white sugar (I didn't have a sweet tooth), though I certianly wish I could eat molasses and brown sugar -- it's very hard to duplicate the taste of those in, say, BBQ sauce, or topping for almond flour coffee cake! I'd eat whole grain breads, if I could; and real pasta (I'm an Italian food freak), and certainly the 70% cocoa dark chocolate (more bitter than sweet) which I delighted in.I don't think about not eating that stuff, normally. But I do miss it periodically, sometimes intensely. Interestingly, that said, the worst "attacks" of remorse over food I've had have been at local festivals where there are food stands up and down the streets. You know the kind, where they sell fried dough, kettle corn, Italian rice balls with sauce, barbacued pulled pork, pizza, caramel appels, etc. (Sorry!) And I didn't even normally eat that kind of stuff very often. It's the food smells more than the taste memory, I think, that got to me.I'm enjoying being thin (but am too thin now) and feeling much better. And I'm enjoying what I now eat. But despite the variety possible on SCD, it does get boring at times, I find. And is so time consuming.  When one works every day (even if from a home office most of the time), spending so many hours in food preparation (even when you like to cook/bake, as I do) gets tedious periodically. (I deeply sympathize with those of you who also have young children to care for -- the children are a gift, of course; but I mean because you have so much work to do to keep an entire family fed -- and happy with what they're being fed!) n

[Guest guest]

I've been reading through this thread with interest. I have never been

officially diagnosed with Celiac Disease, but I'm 99% sure that I have it. I

have been gluten free for several years and have great results with my health.

(I'm also soy free and dairy " light " .)

I have heard way too many stories of people who thought that they were " cured "

of Celiac (or their parents thought they were cured when they were children) and

then went back to eating gluten and had major health breakdowns later. Even if

I stay on SCD for several years, I will never go back to eating gluten or a

" normal " diet. Wheat isn't good for anyone, really, and junk food might taste

good, but it isn't good for anyone either. I will go back to a diet that is

" normal " for me - whole foods, mostly made from scratch, but including some

non-gluten grains like rice and sorghum that don't bother me at all.

I hope my son is cured of UC through this diet, but I will recommend to him that

he stays gluten free and avoid most dairy for life. Dairy has always upset his

digestive system. Gluten messes with his brain way too much and I wouldn't want

him to take a chance at having more serious problems in the future. One of my

daughters is gluten free too and plans to stay that way. She has no other

health problems or food restrictions. A restricted diet is a small price to pay

for good health.

Sorry to butt in to the conversation. Anyone with Celiac or severe gluten

intolerance should be leery of going back to eating gluten.

Liz

>

> marian

> do you have celiac?? will you return after scd? just curious - i'll have to

let the future answer this one, but since i don't miss it - why return - at

least for me

> thanks Eileen

[Guest guest]

I'm curious how many people on-list do great gluten free but were dx'd with UC or CD.

 

When I am fanatically strict--especially when it was soo obvious the first year, my nightmares, sweats and other things I had not even related to CD went away.  Of course, I thought I got better and slowly went off but always have to come back.

 

Of course, saying this out loud to anyone and they act like I'm nuts ;-).  That may be but I'm very curious about it.  And my insurance wouldn't cover anything like this I'm sure--the testing I mean.

 

Have been eating very 'buttery' oxtail soup then chicken soup and everything is acting up.  I wonder if my GB is causing problems right now instead of CD or if it's just one big package.

 

Seeking input if anyone has real feedback--from a doctor like test results, etc.

 

Thanks,

Debbie 40 cd

cd dx'd 3/02, scd 12/05

[Guest guest]

I'm curious how many people on-list do great gluten free but were dx'd with UC or CD.

 

When I am fanatically strict--especially when it was soo obvious the first year, my nightmares, sweats and other things I had not even related to CD went away.  Of course, I thought I got better and slowly went off but always have to come back.

 

Of course, saying this out loud to anyone and they act like I'm nuts ;-).  That may be but I'm very curious about it.  And my insurance wouldn't cover anything like this I'm sure--the testing I mean.

 

Have been eating very 'buttery' oxtail soup then chicken soup and everything is acting up.  I wonder if my GB is causing problems right now instead of CD or if it's just one big package.

 

Seeking input if anyone has real feedback--from a doctor like test results, etc.

 

Thanks,

Debbie 40 cd

cd dx'd 3/02, scd 12/05

[Guest guest]

I'm curious how many people on-list do great gluten free but were dx'd with UC or CD.

 

When I am fanatically strict--especially when it was soo obvious the first year, my nightmares, sweats and other things I had not even related to CD went away.  Of course, I thought I got better and slowly went off but always have to come back.

 

Of course, saying this out loud to anyone and they act like I'm nuts ;-).  That may be but I'm very curious about it.  And my insurance wouldn't cover anything like this I'm sure--the testing I mean.

 

Have been eating very 'buttery' oxtail soup then chicken soup and everything is acting up.  I wonder if my GB is causing problems right now instead of CD or if it's just one big package.

 

Seeking input if anyone has real feedback--from a doctor like test results, etc.

 

Thanks,

Debbie 40 cd

cd dx'd 3/02, scd 12/05

[Guest guest]

Hi, I'm pretty new to this, but after reading both the Sydney Haas and Elaine Gottschall books, I thought this diet was a "cure" for Celiac Disease if followed for a year, then gradually adding in "illegal" foods for six months, then resuming a "normal" diet.

Has anyone experienced this, and isn't that what Dr. Haas developed this diet for? Any answers would be very much appreciated! Thanks so much!!

And -- Thanks for all the great ideas on this group every day!!

Subject: Re: Eileen: Celiac and returning to normal dietTo: BTVC-SCD Date: Tuesday, October 6, 2009, 7:47 PM

mariando you have celiac?? will you return after scd? just curious - i'll have to let the future answer this one, but since i don't miss it - why return - at least for methanks Eileen> > > What you have heard is correct Eileen.> > There has been some progress with certain allergies abating over time in > > certain people under medical supervision.> > Celiac disease is not an allergy. It is an auto-immune problem for > > certain people who are genetically predisposed to it. It is a "forever" > > condition.> >

It is only if you believe that auto-immune conditions are not > reversible/healable . But they are. (For starters, take LDN.) I could give > you a list of names of people who are living proof of it -- and put me on > that list as well.> > > > For the present, a celiac diagnosis is for life> > Yes, it is in among those who practice conventional medicine. BUt they've > been known to be -- and often are -- wrong. A lot of here have experienced > that (and some of us many times).> > n>

[Guest guest]

It really does! I tried buckwheat honey a couple weekends ago (from our local

bee folks) and thought that it would be a perfect substitution in some recipes

that call for molasses as an ingredient!

Stacey

>

> I've read that buckwheat honey tastes like molasses, so you might want to try

it in your recipes. I currently have a local honey called desert blue clover,

and it reminds me of molasses too. I plan on using it to make some ginger snaps.

>

> Holly

> Crohn's

> SCD 12/01/08

>

[Guest guest]

It really does! I tried buckwheat honey a couple weekends ago (from our local

bee folks) and thought that it would be a perfect substitution in some recipes

that call for molasses as an ingredient!

Stacey

>

> I've read that buckwheat honey tastes like molasses, so you might want to try

it in your recipes. I currently have a local honey called desert blue clover,

and it reminds me of molasses too. I plan on using it to make some ginger snaps.

>

> Holly

> Crohn's

> SCD 12/01/08

>

[Guest guest]

Is it possible to test for celiac after having been on SCD for 3 years? My

blood tests were negative for celiac last year, but it probably wasn't accurate

if I haven't been eating gluten.

Also, my allergy tests last year showed a strong reaction to rice and lesser

sensitivities to wheat, corn, barley, lentils ( " can rotate and eat every 4

days " ). Doesn't look like my allergies have " abated " from the diet. Even

without the auto-immune/gut issues, some of us may be better off without most

SCD-illegal foods anyway.

Debbie T (SCD 10/06, UC 29 yrs)

>

> What you have heard is correct Eileen.

> There has been some progress with certain allergies abating over time in

certain people under medical supervision.

>  

> Celiac disease is not an allergy.  It is an auto-immune problem for certain

people who are genetically predisposed to it.  It is a " forever " condition.

>  

> Maintaining a careful gluten-free diet over time will result in healing of the

small intestine and a resolution of many of the symptoms of malabsorption. 

However, if you are a celiac, and return to eating gluten-containing foods,

sooner or later you will regress and again have intestinal damage--whether or

not you are initially symptomatic.  Some people are silent celiacs and do not

experience initial symptoms, however they do have actual damage that is

demonstrated by biopsies taken during scoping.

>  

> Years ago it was believed that children with celiac would " outgrow " their

disease.  Unfortunately many adults learned too late that was not so.

> If you are unsure, Eileen, go to one of the many reputable sites that

exist......Mayo Clinic, Celiac Center at Columbia U. in NYC begun by

Green, MD,  U. land Center under Dr. Alessio Fasano,....these are just a few

but so many abound and can be Googled for accurate information.......and read

about Celiac Disease. 

>  

> For the present, a celiac diagnosis is for life and a clean diet is necessary

to prevent the many health conditions that follow missed diagnosis or refusal to

follow a careful GF regimen.  I would be very suspect of anyone who advises you

a celiac can  " outgrow " , heal or otherwise ignore following a GF diet and remain

healthy.  

> Again, Celiac Disease is not an " allergy " though some articles in the popular

press don't make this distinction.

> Additionally, this info. is relevent to individuals who have been diagnosed

via EGD and biopsy where typical intestinal damage have been verified.

>  

> Hope this helps,

> Gen

>  

>

[Guest guest]

thanks -don't imagine you'd get accurate results without gluten in- they made

me put gluten back in before scoping my boys and yes alot of that food is

un-needed

eileen

> >

> > What you have heard is correct Eileen.

> > There has been some progress with certain allergies abating over time in

certain people under medical supervision.

> >  

> > Celiac disease is not an allergy.  It is an auto-immune problem for certain

people who are genetically predisposed to it.  It is a " forever " condition.

> >  

> > Maintaining a careful gluten-free diet over time will result in healing of

the small intestine and a resolution of many of the symptoms of malabsorption. 

However, if you are a celiac, and return to eating gluten-containing foods,

sooner or later you will regress and again have intestinal damage--whether or

not you are initially symptomatic.  Some people are silent celiacs and do not

experience initial symptoms, however they do have actual damage that is

demonstrated by biopsies taken during scoping.

> >  

> > Years ago it was believed that children with celiac would " outgrow " their

disease.  Unfortunately many adults learned too late that was not so.

> > If you are unsure, Eileen, go to one of the many reputable sites that

exist......Mayo Clinic, Celiac Center at Columbia U. in NYC begun by

Green, MD,  U. land Center under Dr. Alessio Fasano,....these are just a few

but so many abound and can be Googled for accurate information.......and read

about Celiac Disease. 

> >  

> > For the present, a celiac diagnosis is for life and a clean diet is

necessary to prevent the many health conditions that follow missed diagnosis or

refusal to follow a careful GF regimen.  I would be very suspect of anyone

who advises you a celiac can  " outgrow " , heal or otherwise ignore following a GF

diet and remain healthy.  

> > Again, Celiac Disease is not an " allergy " though some articles in the

popular press don't make this distinction.

> > Additionally, this info. is relevent to individuals who have been diagnosed

via EGD and biopsy where typical intestinal damage have been verified.

> >  

> > Hope this helps,

> > Gen

> >  

> >

>

[Guest guest]

thanks -don't imagine you'd get accurate results without gluten in- they made

me put gluten back in before scoping my boys and yes alot of that food is

un-needed

eileen

> >

> > What you have heard is correct Eileen.

> > There has been some progress with certain allergies abating over time in

certain people under medical supervision.

> >  

> > Celiac disease is not an allergy.  It is an auto-immune problem for certain

people who are genetically predisposed to it.  It is a " forever " condition.

> >  

> > Maintaining a careful gluten-free diet over time will result in healing of

the small intestine and a resolution of many of the symptoms of malabsorption. 

However, if you are a celiac, and return to eating gluten-containing foods,

sooner or later you will regress and again have intestinal damage--whether or

not you are initially symptomatic.  Some people are silent celiacs and do not

experience initial symptoms, however they do have actual damage that is

demonstrated by biopsies taken during scoping.

> >  

> > Years ago it was believed that children with celiac would " outgrow " their

disease.  Unfortunately many adults learned too late that was not so.

> > If you are unsure, Eileen, go to one of the many reputable sites that

exist......Mayo Clinic, Celiac Center at Columbia U. in NYC begun by

Green, MD,  U. land Center under Dr. Alessio Fasano,....these are just a few

but so many abound and can be Googled for accurate information.......and read

about Celiac Disease. 

> >  

> > For the present, a celiac diagnosis is for life and a clean diet is

necessary to prevent the many health conditions that follow missed diagnosis or

refusal to follow a careful GF regimen.  I would be very suspect of anyone

who advises you a celiac can  " outgrow " , heal or otherwise ignore following a GF

diet and remain healthy.  

> > Again, Celiac Disease is not an " allergy " though some articles in the

popular press don't make this distinction.

> > Additionally, this info. is relevent to individuals who have been diagnosed

via EGD and biopsy where typical intestinal damage have been verified.

> >  

> > Hope this helps,

> > Gen

> >  

> >

>

[Guest guest]

At 03:03 PM 10/8/2009, you wrote:

Is it possible to test for

celiac after having been on SCD for 3 years? My blood tests were negative

for celiac last year, but it probably wasn't accurate if I haven't been

eating gluten.

All I know is that my niece had to go back on gluten in order to be

tested for celiac. And that she spent the entire time she was eating

gluten feeling like she had a major case of the flu and had been beaten

with an ugly stick, besides.

>> Also, my allergy tests last year showed a strong reaction

to rice and lesser sensitivities to wheat, corn, barley, lentils

( " can rotate and eat every 4 days " ). Doesn't look like my

allergies have " abated " from the diet. Even without the

auto-immune/gut issues, some of us may be better off without most

SCD-illegal foods anyway. <<

I know Elaine's daughter can't eat rice to this day, though she can

apparently eat a few other things.

—

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]

At 03:03 PM 10/8/2009, you wrote:

Is it possible to test for

celiac after having been on SCD for 3 years? My blood tests were negative

for celiac last year, but it probably wasn't accurate if I haven't been

eating gluten.

All I know is that my niece had to go back on gluten in order to be

tested for celiac. And that she spent the entire time she was eating

gluten feeling like she had a major case of the flu and had been beaten

with an ugly stick, besides.

>> Also, my allergy tests last year showed a strong reaction

to rice and lesser sensitivities to wheat, corn, barley, lentils

( " can rotate and eat every 4 days " ). Doesn't look like my

allergies have " abated " from the diet. Even without the

auto-immune/gut issues, some of us may be better off without most

SCD-illegal foods anyway. <<

I know Elaine's daughter can't eat rice to this day, though she can

apparently eat a few other things.

—

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]

At 03:03 PM 10/8/2009, you wrote:

Is it possible to test for

celiac after having been on SCD for 3 years? My blood tests were negative

for celiac last year, but it probably wasn't accurate if I haven't been

eating gluten.

All I know is that my niece had to go back on gluten in order to be

tested for celiac. And that she spent the entire time she was eating

gluten feeling like she had a major case of the flu and had been beaten

with an ugly stick, besides.

>> Also, my allergy tests last year showed a strong reaction

to rice and lesser sensitivities to wheat, corn, barley, lentils

( " can rotate and eat every 4 days " ). Doesn't look like my

allergies have " abated " from the diet. Even without the

auto-immune/gut issues, some of us may be better off without most

SCD-illegal foods anyway. <<

I know Elaine's daughter can't eat rice to this day, though she can

apparently eat a few other things.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund