NEW MEMBER (Celiac patient) - Laboratory results and more

[Guest guest]

Hi, SCDers:

Was diagnosed with Celiac Dsease in 2007 by a board-certified GI doc on the

basis of anti-gluten antibodies in serum. Have been trying a variety of diets

since 2006 (pre-diagnosis) with little success (many experiments were followed

with extensive blood work and a meticulous diet-symptom diary to ensure I was

actually improving or worsening on the experimental diet, so I can confidentaly

say little success was encountered).

Constipation is my main GI symptom: Drs Haas made one reference to this

complaint, saying it renders " diagnosis difficult " , but that its presence does

not in any way mean the patient will not be benefitted by the SCD.

I've tried a strict SCD for two weeks, and at the two week mark my liver enzymes

increased considerably, whereupon I immediately abandoned the diet. This does

not invalidate the most fundamental principle of the SCD (monosaccharides only),

but it does suggest that the diet, like all other diets/ways of eating, may

permit foods which are literally toxic (liver enzymes freuqntly rise when

poisons are ingested), thus stalling progress. I want to underscore that this

2-week SCD experiment was very strict, and I even imposed additional conditions

upon myself (low-to-moderate salt; not a single processed food was eaten; sole

animal product consumed was grass-only hormone-free beef; no vegetable fats; no

caffeine or alcohol or drugs/medicine in any way, shape, form; etc.)

If I can identify the toxic agent(s) - and I'm spending a lot of money on labs

and a lot of time in the medical library in an effort to do so - I might be able

to help out those SCDers whose success has been less than what was anticipate or

hoped for, myself included.

I am now prepared to try the SCD again, but need some encouragement. To this

end I've a few questions.

1) I've all of the Drs. Haas medical articles, as well as the book, " Management

of Celiac Disease " , and they stress repeatedly a normal diet can be adopted in

the vast majority of cases by 18 months. Yet, I'm surprised to learn that very

few modern SCDers go back to a normal diet at the end of 18 months, if at all,

which seems to be un-necessary, assuming " the Dr. [Haas] knows best " . Have any

of the readers of this message gone back to a reasonably normal diet within 18 -

24 months, and can say, with Drs. Haas, " the SCD cured me " (by " cure " both Drs.

Haas and I mean polysaccharides can again be eaten without injury being done to

one's self).

2) I've also high blood prolactin (MRIs were negative for tumours), a major

risk factor for bone disease and a host of other serious medical conditions,

besides chronic jaundice (high bilirubin). Have any readers of this message

been likewise diagnosed? Has your prolactin and/or bilirubin dropped on the

SCD?

3) Is there anyone out there who can verify subjective improvement with

objective (labs) improvement after adoption of the SCD? Please elaborate on

blood/diagnostic imaging improvements.

I am seriously considering medical school, but am seeking a cure to my impaired

health first. With your help, I may be able to do so, and upon graduation,

unless I am corrupted whilst at med school (this seems to happen with some

regularity, apparently), I would do everything in my power to raise awareness

about the utility of the dietary modification in the restoration and maintenace

of health.

Thanks,

.

[Guest guest]

> Hi, SCDers:

>

> Was diagnosed with Celiac Dsease in 2007 by a board-certified GI doc on the

basis of anti-gluten antibodies in serum. Have been trying a variety of diets

since 2006 (pre-diagnosis) with little success (many experiments were followed

with extensive blood work and a meticulous diet-symptom diary to ensure I was

actually improving or worsening on the experimental diet, so I can confidentaly

say little success was encountered).

>

> Constipation is my main GI symptom: Drs Haas made one reference to this

complaint, saying it renders " diagnosis difficult " , but that its presence does

not in any way mean the patient will not be benefitted by the SCD.

>

> I've tried a strict SCD for two weeks, and at the two week mark my liver

enzymes increased considerably, whereupon I immediately abandoned the diet.

This happens during die off of pathogenic bacteria. All that may have happened

is that you were experiencing

a lot of pathogenic die off from the diet which releases toxins into your

system that in turn cause your

liver enzymes to rise. Which is what is supposed to happen.

> This does not invalidate the most fundamental principle of the SCD

(monosaccharides only), but it does suggest that the diet, like all other

diets/ways of eating, may permit foods which are literally toxic (liver enzymes

freuqntly rise when poisons are ingested), thus stalling progress. I want to

underscore that this 2-week SCD experiment was very strict, and I even imposed

additional conditions upon myself (low-to-moderate salt; not a single processed

food was eaten; sole animal product consumed was grass-only hormone-free beef;

no vegetable fats; no caffeine or alcohol or drugs/medicine in any way, shape,

form; etc.)

>

> If I can identify the toxic agent(s) - and I'm spending a lot of money on labs

and a lot of time in the medical library in an effort to do so - I might be able

to help out those SCDers whose success has been less than what was anticipate or

hoped for, myself included.

>

> I am now prepared to try the SCD again, but need some encouragement. To this

end I've a few questions.

>

> 1) I've all of the Drs. Haas medical articles, as well as the book,

" Management of Celiac Disease " , and they stress repeatedly a normal diet can be

adopted in the vast majority of cases by 18 months. Yet, I'm surprised to learn

that very few modern SCDers go back to a normal diet at the end of 18 months, if

at all, which seems to be un-necessary, assuming " the Dr. [Haas] knows best " .

Have any of the readers of this message gone back to a reasonably normal diet

within 18 - 24 months, and can say, with Drs. Haas, " the SCD cured me " (by

" cure " both Drs. Haas and I mean polysaccharides can again be eaten without

injury being done to one's self).

Most of the people who get completely healed leave the board - but even so, It

is recommended

on the SCDiet never to go back to full time regular carb consumption because the

belief is that

in many cases that will cause symptoms to arise that will take you out of

remission.

Mara

[Guest guest]

Hi , see my answers inset below:Kathttp://scdkat.com

 

Hi, SCDers:

I've tried a strict SCD for two weeks, and at the two week mark my liver enzymes increased considerablyWhere you following the intro diet or full SCD? Some people do better slowly approaching the SCD by cutting out illegals and then once comfortable they follow the intro diet. The intro diet can cause the body to release a lot of toxins, which need to be processed by the liver and might be the reason for elevated liver enzymes.

If you want to try again, there are many things you can do to support the liver during the detox period:Beets, fresh lemon juice in water (especially before meals), good quality sea salt (actually helps not harms), ginger tea, vitamin C (helps to bind toxins for removal).

1) I've all of the Drs. Haas medical articles, as well as the book, " Management of Celiac Disease " , and they stress repeatedly a normal diet can be adopted in the vast majority of cases by 18 months.

Keep in mind Dr Haas treated many children. Most people on these boards are adults who have been sick for a very long time. Some are on medications that take a long time to wean off too. Also I'm not sure if when he wrote Management of Celiac Disease that a normal diet was the same as a normal diet now.

After 2 years on SCD I recently added chocolate and potatoes back into my diet no problems. I had rice for about a month but was craving it too much so decided not to continue it. I got no digestive problems from it. I know wheat is out because of Celiac. Other grains I haven't really tried. Sugar is fine for me in small amounts but I don't even have it in the house so I haven't tested that out too much. I'm sure I could return to a more 'normal' gluten-free diet but I don't really want to.

2) I've also high blood prolactin (MRIs were negative for tumours), a major risk factor for bone disease and a host of other serious medical conditions, besides chronic jaundice (high bilirubin). Have any readers of this message been likewise diagnosed? Has your prolactin and/or bilirubin dropped on the SCD?

Sorry I'm not sure about this one! 

3) Is there anyone out there who can verify subjective improvement with objective (labs) improvement after adoption of the SCD? Please elaborate on blood/diagnostic imaging improvements.

Mu iron, B12 and folate levels never remained in normal range before SCD. With supplements I would get to low-normal range. As soon as supplements were stopped they would drop again. Now I haven't had to take supplements and levels are all mid-high normal. I haven't really had any other testing.

I am seriously considering medical school, ... and upon graduation, unless I am corrupted whilst at med school (this seems to happen with some regularity, apparently),Give me a call when you graduate. I can offer a swift kick in the pants if you have been corrupted  

Thanks,

.

[Guest guest]

Hi, Mara:

Thanks.

But I've many times been eating loads of compound carbs, and then cold-turkey

adopted a strict meat-water ONLY diet with no increase in enzymes on the

carnivore diet, this while undergoing weekly blood work. On meat-water my

enyzmes have NEVER risen above 30 U/L (lab " normal " range: <40). So, it's much

more complicated. But you may be partly right, and I'd love to seem some

medical articles showing liver enzyme increases in response to die-off of

pathogenic bowel microflora. (I spend a lot of time in med libraries.)

Re: your response to my Question #1. If one cannot go back to regular carb

eating, then the Drs. Haas were wrong (possible, but they did treat literally

100s of children), becuase they NO-WHERE mention one has to watch the total

amount of carbs eaten, either while recuperating on the SCD or afterwards. And

if the problem with our health is not the type of carbs, but the absolute amount

of carbs eaten, then the fundamental principle of SCD is flawed. I am not yet

convinced that this is in fact the case.

Thanks,

.

>

> > Hi, SCDers:

> >

> > Was diagnosed with Celiac Dsease in 2007 by a board-certified GI doc on the

basis of anti-gluten antibodies in serum. Have been trying a variety of diets

since 2006 (pre-diagnosis) with little success (many experiments were followed

with extensive blood work and a meticulous diet-symptom diary to ensure I was

actually improving or worsening on the experimental diet, so I can confidentaly

say little success was encountered).

> >

> > Constipation is my main GI symptom: Drs Haas made one reference to this

complaint, saying it renders " diagnosis difficult " , but that its presence does

not in any way mean the patient will not be benefitted by the SCD.

> >

> > I've tried a strict SCD for two weeks, and at the two week mark my liver

enzymes increased considerably, whereupon I immediately abandoned the diet.

>

> This happens during die off of pathogenic bacteria. All that may have

happened is that you were experiencing

> a lot of pathogenic die off from the diet which releases toxins into your

system that in turn cause your

> liver enzymes to rise. Which is what is supposed to happen.

>

> > This does not invalidate the most fundamental principle of the SCD

(monosaccharides only), but it does suggest that the diet, like all other

diets/ways of eating, may permit foods which are literally toxic (liver enzymes

freuqntly rise when poisons are ingested), thus stalling progress. I want to

underscore that this 2-week SCD experiment was very strict, and I even imposed

additional conditions upon myself (low-to-moderate salt; not a single processed

food was eaten; sole animal product consumed was grass-only hormone-free beef;

no vegetable fats; no caffeine or alcohol or drugs/medicine in any way, shape,

form; etc.)

> >

> > If I can identify the toxic agent(s) - and I'm spending a lot of money on

labs and a lot of time in the medical library in an effort to do so - I might be

able to help out those SCDers whose success has been less than what was

anticipate or hoped for, myself included.

> >

> > I am now prepared to try the SCD again, but need some encouragement. To

this end I've a few questions.

> >

> > 1) I've all of the Drs. Haas medical articles, as well as the book,

" Management of Celiac Disease " , and they stress repeatedly a normal diet can be

adopted in the vast majority of cases by 18 months. Yet, I'm surprised to learn

that very few modern SCDers go back to a normal diet at the end of 18 months, if

at all, which seems to be un-necessary, assuming " the Dr. [Haas] knows best " .

Have any of the readers of this message gone back to a reasonably normal diet

within 18 - 24 months, and can say, with Drs. Haas, " the SCD cured me " (by

" cure " both Drs. Haas and I mean polysaccharides can again be eaten without

injury being done to one's self).

>

> Most of the people who get completely healed leave the board - but even so, It

is recommended

> on the SCDiet never to go back to full time regular carb consumption because

the belief is that

> in many cases that will cause symptoms to arise that will take you out of

remission.

>

> Mara

>

[Guest guest]

,

I am not the most experienced with SCD, but I have not seen anyone here yet with

elevated liver enzymes and bilirubin on SCD alone. There are many causes of this

as you know: medication, viruses, autoimmune processes and so on.

Everyone is different and on SCD for various reasons. Yes, BTVC says two years

but many people stay on it for longer. I would wonder if Dr Haas made this

decision based on treating celiac in young people. He was a pediatrician. Many

people with other conditions or celiac as adults may respond differently.

Labs tell only a part of the story and the person's overall response is also

important. So if SCD results in a better improvement of GI symptoms, feeling

better, that makes it worthwhile too. The diet is made up of regular everyday

foods and I would not think any one of them is " toxic " . If a person reacts to an

individual food- then that is specific to them and it may not help to eliminate

that food for all people on SCD. Many of us on SCD identify foods that bother us

by the way we feel, not through frequent labs that can be affected by other

conditions We are also different ages and genders and started from a different

place. Comparing my labs to yours would be a mistake.

I think it is great that you want to go to medical school. The more doctors

become involved in looking at various ways to help people, the better off we

are. I think first it would be good to try to get SCD to work for you. Labs from

the rest of us won't help because we all have different situations, different

medications and diet variations.

I do encourage you to keep an inquiring mind and I hope SCD will work for you.

PJ

>

> Hi, SCDers:

>

> Was diagnosed with Celiac Dsease in 2007 by a board-certified GI doc on the

basis of anti-gluten antibodies in serum. Have been trying a variety of diets

since 2006 (pre-diagnosis) with little success (many experiments were followed

with extensive blood work and a meticulous diet-symptom diary to ensure I was

actually improving or worsening on the experimental diet, so I can confidentaly

say little success was encountered).

>

> Constipation is my main GI symptom: Drs Haas made one reference to this

complaint, saying it renders " diagnosis difficult " , but that its presence does

not in any way mean the patient will not be benefitted by the SCD.

>

> I've tried a strict SCD for two weeks, and at the two week mark my liver

enzymes increased considerably, whereupon I immediately abandoned the diet.

This does not invalidate the most fundamental principle of the SCD

(monosaccharides only), but it does suggest that the diet, like all other

diets/ways of eating, may permit foods which are literally toxic (liver enzymes

freuqntly rise when poisons are ingested), thus stalling progress. I want to

underscore that this 2-week SCD experiment was very strict, and I even imposed

additional conditions upon myself (low-to-moderate salt; not a single processed

food was eaten; sole animal product consumed was grass-only hormone-free beef;

no vegetable fats; no caffeine or alcohol or drugs/medicine in any way, shape,

form; etc.)

>

> If I can identify the toxic agent(s) - and I'm spending a lot of money on labs

and a lot of time in the medical library in an effort to do so - I might be able

to help out those SCDers whose success has been less than what was anticipate or

hoped for, myself included.

>

> I am now prepared to try the SCD again, but need some encouragement. To this

end I've a few questions.

>

> 1) I've all of the Drs. Haas medical articles, as well as the book,

" Management of Celiac Disease " , and they stress repeatedly a normal diet can be

adopted in the vast majority of cases by 18 months. Yet, I'm surprised to learn

that very few modern SCDers go back to a normal diet at the end of 18 months, if

at all, which seems to be un-necessary, assuming " the Dr. [Haas] knows best " .

Have any of the readers of this message gone back to a reasonably normal diet

within 18 - 24 months, and can say, with Drs. Haas, " the SCD cured me " (by

" cure " both Drs. Haas and I mean polysaccharides can again be eaten without

injury being done to one's self).

>

> 2) I've also high blood prolactin (MRIs were negative for tumours), a major

risk factor for bone disease and a host of other serious medical conditions,

besides chronic jaundice (high bilirubin). Have any readers of this message

been likewise diagnosed? Has your prolactin and/or bilirubin dropped on the

SCD?

>

> 3) Is there anyone out there who can verify subjective improvement with

objective (labs) improvement after adoption of the SCD? Please elaborate on

blood/diagnostic imaging improvements.

>

>

> I am seriously considering medical school, but am seeking a cure to my

impaired health first. With your help, I may be able to do so, and upon

graduation, unless I am corrupted whilst at med school (this seems to happen

with some regularity, apparently), I would do everything in my power to raise

awareness about the utility of the dietary modification in the restoration and

maintenace of health.

>

> Thanks,

> .

>

[Guest guest]

, what exactly were you eating when you did 2 weeks SCD?Also see my other post with answers to your questions.Kathttp://scdkat.com

 

Hi, Mara:

Thanks.

But I've many times been eating loads of compound carbs, and then cold-turkey adopted a strict meat-water ONLY diet with no increase in enzymes on the carnivore diet, this while undergoing weekly blood work. On meat-water my enyzmes have NEVER risen above 30 U/L (lab " normal " range: <40). So, it's much more complicated. But you may be partly right, and I'd love to seem some medical articles showing liver enzyme increases in response to die-off of pathogenic bowel microflora. (I spend a lot of time in med libraries.)

Re: your response to my Question #1. If one cannot go back to regular carb eating, then the Drs. Haas were wrong (possible, but they did treat literally 100s of children), becuase they NO-WHERE mention one has to watch the total amount of carbs eaten, either while recuperating on the SCD or afterwards. And if the problem with our health is not the type of carbs, but the absolute amount of carbs eaten, then the fundamental principle of SCD is flawed. I am not yet convinced that this is in fact the case.

Thanks,

.

>

> > Hi, SCDers:

> >

> > Was diagnosed with Celiac Dsease in 2007 by a board-certified GI doc on the basis of anti-gluten antibodies in serum. Have been trying a variety of diets since 2006 (pre-diagnosis) with little success (many experiments were followed with extensive blood work and a meticulous diet-symptom diary to ensure I was actually improving or worsening on the experimental diet, so I can confidentaly say little success was encountered).

> >

> > Constipation is my main GI symptom: Drs Haas made one reference to this complaint, saying it renders " diagnosis difficult " , but that its presence does not in any way mean the patient will not be benefitted by the SCD.

> >

> > I've tried a strict SCD for two weeks, and at the two week mark my liver enzymes increased considerably, whereupon I immediately abandoned the diet.

>

> This happens during die off of pathogenic bacteria. All that may have happened is that you were experiencing

> a lot of pathogenic die off from the diet which releases toxins into your system that in turn cause your

> liver enzymes to rise. Which is what is supposed to happen.

>

> > This does not invalidate the most fundamental principle of the SCD (monosaccharides only), but it does suggest that the diet, like all other diets/ways of eating, may permit foods which are literally toxic (liver enzymes freuqntly rise when poisons are ingested), thus stalling progress. I want to underscore that this 2-week SCD experiment was very strict, and I even imposed additional conditions upon myself (low-to-moderate salt; not a single processed food was eaten; sole animal product consumed was grass-only hormone-free beef; no vegetable fats; no caffeine or alcohol or drugs/medicine in any way, shape, form; etc.)

> >

> > If I can identify the toxic agent(s) - and I'm spending a lot of money on labs and a lot of time in the medical library in an effort to do so - I might be able to help out those SCDers whose success has been less than what was anticipate or hoped for, myself included.

> >

> > I am now prepared to try the SCD again, but need some encouragement. To this end I've a few questions.

> >

> > 1) I've all of the Drs. Haas medical articles, as well as the book, " Management of Celiac Disease " , and they stress repeatedly a normal diet can be adopted in the vast majority of cases by 18 months. Yet, I'm surprised to learn that very few modern SCDers go back to a normal diet at the end of 18 months, if at all, which seems to be un-necessary, assuming " the Dr. [Haas] knows best " . Have any of the readers of this message gone back to a reasonably normal diet within 18 - 24 months, and can say, with Drs. Haas, " the SCD cured me " (by " cure " both Drs. Haas and I mean polysaccharides can again be eaten without injury being done to one's self).

>

> Most of the people who get completely healed leave the board - but even so, It is recommended

> on the SCDiet never to go back to full time regular carb consumption because the belief is that

> in many cases that will cause symptoms to arise that will take you out of remission.

>

> Mara

>

[Guest guest]

Hi ,

I'm sorry you have such puzzling results so far to starting the diet and

I wish you well in your research. We do have to be detectives a lot

around here. I can't answer most of your questions but will

comment on celiac as I am definitely gluten intolerant or have celiac.

Haven't had that nasty biopsy to make sure. I am not familiar with

the book you are quoting but I've never heard anything to indicate that

those of us with celiac/gluten problems can ever expect to do anything

but strict avoidance, for life. Which of course doesn't matter one

bit with SCD because we can't eat the stuff anyhow. I have had the

problem (known) for 30 years. When I had my last colonoscopy the GI

said that the least bit of gluten can really cause inflammation in the

gut and it can last a long long time. So I'm not about to test this one.

Ever.

Some people after usually a pretty long healing period can eat some

illegal foods again. Many cannot. My own suspicion is that we

wouldn't have this problem if we didn't have some sort of inborn tendency

to it, in addition to whatever got us into the overt dysbiosis situation

that brought us here. I know I have no intention of looking forward to

what would be cheating right now. I DO look forward to being able to eat

more legal foods, which I cannot do as of yet. But then, I've only

been on the diet a year now so healing is not complete.

1) I've all of the Drs. Haas medical articles, as well as the book,

" Management of Celiac Disease " , and they stress repeatedly a

normal diet can be adopted in the vast majority of cases by 18 months.

Yet, I'm surprised to learn that very few modern SCDers go back to a

normal diet at the end of 18 months, if at all, which seems to be

un-necessary, assuming " the Dr. [Haas] knows best " . Have any of

the readers of this message gone back to a reasonably normal diet within

18 - 24 months, and can say, with Drs. Haas, " the SCD cured me "

(by " cure " both Drs. Haas and I mean polysaccharides can again

be eaten without injury being done to one's self).

[Guest guest]

Give me a call when you graduate. I can offer a swift kick in the pants if you have been corrupted Lol, Kat! I would be more than happy to lend a helping hand (foot?) with that =) Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!)

[Guest guest]

I think a key pointer to keep in mind is back when Dr's Haas' wrote the book

like most IBD ailments went under the category of Celiac including that of

auto-immune issues.

They bring all kinds of studies and observations into their work but still it's

important to realize that it's a blanket statement..

Based on this; (dare I say?!?) it's safe to say maybe minor tweaks for different

IBD ailments ie.. CD, UC, Diverticulitis, IBS, Celiac's etc etc may have common

underlying needs.

One thing for sure as we learn from one another and this incredible community-

is that there is no one size fits all policy. What may work for me may not work

for you and vice versa.

It's also important to keep in mind the year they wrote and released their book-

There weren't nearly as many environmental factors or modern agribusiness and

the list goes on and on.

Jodi

> >

> > > Hi, SCDers:

> > >

> > > Was diagnosed with Celiac Dsease in 2007 by a board-certified GI doc on

the basis of anti-gluten antibodies in serum. Have been trying a variety of

diets since 2006 (pre-diagnosis) with little success (many experiments were

followed with extensive blood work and a meticulous diet-symptom diary to ensure

I was actually improving or worsening on the experimental diet, so I can

confidentaly say little success was encountered).

> > >

> > > Constipation is my main GI symptom: Drs Haas made one reference to this

complaint, saying it renders " diagnosis difficult " , but that its presence does

not in any way mean the patient will not be benefitted by the SCD.

> > >

> > > I've tried a strict SCD for two weeks, and at the two week mark my liver

enzymes increased considerably, whereupon I immediately abandoned the diet.

> >

> > This happens during die off of pathogenic bacteria. All that may have

happened is that you were experiencing

> > a lot of pathogenic die off from the diet which releases toxins into your

system that in turn cause your

> > liver enzymes to rise. Which is what is supposed to happen.

> >

> > > This does not invalidate the most fundamental principle of the SCD

(monosaccharides only), but it does suggest that the diet, like all other

diets/ways of eating, may permit foods which are literally toxic (liver enzymes

freuqntly rise when poisons are ingested), thus stalling progress. I want to

underscore that this 2-week SCD experiment was very strict, and I even imposed

additional conditions upon myself (low-to-moderate salt; not a single processed

food was eaten; sole animal product consumed was grass-only hormone-free beef;

no vegetable fats; no caffeine or alcohol or drugs/medicine in any way, shape,

form; etc.)

> > >

> > > If I can identify the toxic agent(s) - and I'm spending a lot of money on

labs and a lot of time in the medical library in an effort to do so - I might be

able to help out those SCDers whose success has been less than what was

anticipate or hoped for, myself included.

> > >

> > > I am now prepared to try the SCD again, but need some encouragement. To

this end I've a few questions.

> > >

> > > 1) I've all of the Drs. Haas medical articles, as well as the book,

" Management of Celiac Disease " , and they stress repeatedly a normal diet can be

adopted in the vast majority of cases by 18 months. Yet, I'm surprised to learn

that very few modern SCDers go back to a normal diet at the end of 18 months, if

at all, which seems to be un-necessary, assuming " the Dr. [Haas] knows best " .

Have any of the readers of this message gone back to a reasonably normal diet

within 18 - 24 months, and can say, with Drs. Haas, " the SCD cured me " (by

" cure " both Drs. Haas and I mean polysaccharides can again be eaten without

injury being done to one's self).

> >

> > Most of the people who get completely healed leave the board - but even so,

It is recommended

> > on the SCDiet never to go back to full time regular carb consumption because

the belief is that

> > in many cases that will cause symptoms to arise that will take you out of

remission.

> >

> > Mara

> >

>

[Guest guest]

Hi ,

The Yahoo archives should be working now!! Woohoo.

Anyway- you should do a search on what AJ posted.. I think he posted under

dietscd or scddiet.

I think he may have more coherent lab work to possibly discuss with you.

Jodi

>

> Hi, SCDers:

>

> Was diagnosed with Celiac Dsease in 2007 by a board-certified GI doc on the

basis of anti-gluten antibodies in serum. Have been trying a variety of diets

since 2006 (pre-diagnosis) with little success (many experiments were followed

with extensive blood work and a meticulous diet-symptom diary to ensure I was

actually improving or worsening on the experimental diet, so I can confidentaly

say little success was encountered).

>

> Constipation is my main GI symptom: Drs Haas made one reference to this

complaint, saying it renders " diagnosis difficult " , but that its presence does

not in any way mean the patient will not be benefitted by the SCD.

>

> I've tried a strict SCD for two weeks, and at the two week mark my liver

enzymes increased considerably, whereupon I immediately abandoned the diet.

This does not invalidate the most fundamental principle of the SCD

(monosaccharides only), but it does suggest that the diet, like all other

diets/ways of eating, may permit foods which are literally toxic (liver enzymes

freuqntly rise when poisons are ingested), thus stalling progress. I want to

underscore that this 2-week SCD experiment was very strict, and I even imposed

additional conditions upon myself (low-to-moderate salt; not a single processed

food was eaten; sole animal product consumed was grass-only hormone-free beef;

no vegetable fats; no caffeine or alcohol or drugs/medicine in any way, shape,

form; etc.)

>

> If I can identify the toxic agent(s) - and I'm spending a lot of money on labs

and a lot of time in the medical library in an effort to do so - I might be able

to help out those SCDers whose success has been less than what was anticipate or

hoped for, myself included.

>

> I am now prepared to try the SCD again, but need some encouragement. To this

end I've a few questions.

>

> 1) I've all of the Drs. Haas medical articles, as well as the book,

" Management of Celiac Disease " , and they stress repeatedly a normal diet can be

adopted in the vast majority of cases by 18 months. Yet, I'm surprised to learn

that very few modern SCDers go back to a normal diet at the end of 18 months, if

at all, which seems to be un-necessary, assuming " the Dr. [Haas] knows best " .

Have any of the readers of this message gone back to a reasonably normal diet

within 18 - 24 months, and can say, with Drs. Haas, " the SCD cured me " (by

" cure " both Drs. Haas and I mean polysaccharides can again be eaten without

injury being done to one's self).

>

> 2) I've also high blood prolactin (MRIs were negative for tumours), a major

risk factor for bone disease and a host of other serious medical conditions,

besides chronic jaundice (high bilirubin). Have any readers of this message

been likewise diagnosed? Has your prolactin and/or bilirubin dropped on the

SCD?

>

> 3) Is there anyone out there who can verify subjective improvement with

objective (labs) improvement after adoption of the SCD? Please elaborate on

blood/diagnostic imaging improvements.

>

>

> I am seriously considering medical school, but am seeking a cure to my

impaired health first. With your help, I may be able to do so, and upon

graduation, unless I am corrupted whilst at med school (this seems to happen

with some regularity, apparently), I would do everything in my power to raise

awareness about the utility of the dietary modification in the restoration and

maintenace of health.

>

> Thanks,

> .

>

[Guest guest]

At 03:44 PM 8/10/2010, you wrote:

If one cannot go back to regular

carb eating, then the Drs. Haas were wrong (possible, but they did treat

literally 100s of children), becuase they NO-WHERE mention one has to

watch the total amount of carbs eaten, either while recuperating on the

SCD or afterwards. And if the problem with our health is not the type of

carbs, but the absolute amount of carbs eaten, then the fundamental

principle of SCD is flawed. I am not yet convinced that this is in fact

the case.

Just as a data point -- the Drs. Haas were treating CHILDREN. In general,

the earlier an illness is caught and treated with diet, the more likely

the person is to be able to return to eating some complex carbs. (This

means Alyssa has a better chance than most of us!)

My niece was on strict SCD for two years and has been able to add things

like potatoes back in, but says she will never go near anything with

gluten again.

I feel that I am on SCD for life, because I was 49 when I found the diet,

after 25 years of gut issues. Nonetheless, coming up on 9 years on SCD,

I'm able to be a bit less strict. However, I have other health issues for

which I want optimum health so, having found that SCD works for me, and

that I enjoy the food, I'm not really worried about going back on a diet

with polysaccharides. Perhaps when I've reached my 5 years, and

have been declared cancer free (I had surgery for uterine cancer in

2008), I'll look at trying a potato. <g>

I personally, feel better on a lower carb diet, but I'm not " low

carb " by any means.

I think that, like almost everything to do with SCD, the total amount of

carbs eaten is going to depend on the individual. Some will do well with

a significant quantity of legal carbs and others will do well with a

lower quantity.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

As

others have mentioned, Dr. Haas worked with children, and they are more likely

to be able to successfully resume eating polysaccharides after their gut

dysbiosis has restabilized. Adults usually have other health issues that

play a role in “cure,” not to mention having to deal with long-term

damage to their gut ecology, so for many adults remission is what they’re

looking for, and it takes time. Many stay on SCD even after remission

because their digestions just don’t work quite the same way again so

there is a risk of developing symptoms. Individual variation is

tremendous among people, not just in the SCD foods they can tolerate, but in

their healing time and what they continue to eat after they’ve reached

their healing point.

I’ve

been on SCD for more than six years; I hit my healing point during my 3rd

year. I stay on SCD because it is the only method I’ve found that

helps me keep my chronic symptoms under management. I was diagnosed with a

somewhat uncommon digestive disorder, Sphincter of Oddi dysfunction.

Unlike many others on SCD I have to be extremely careful with fiber, fat, spices

and carbohydrates. There are no medications that can help specifically with

this disorder, just alleviate some of the symptoms. I have symptoms every time

I eat (and drink) but thanks to SCD I’ve learned to keep the symptoms

minimal most of the time. I don’t eat many of the permitted foods,

but that is OK.

There’s

a neurological component with my digestive disorder, and I’ve gone on to

develop additional neuropathies and neurological conditions. So while my

digestion is under management, my body has continued to deteriorate, albeit

slowly. This happens. [shrug] I don’t blame SCD or diet; it

is just the way my body is deteriorating. I can cope with the ongoing

deterioration better now that my digestive symptoms are minimal most of the

time. Of course I go through regular cycles of more severe digestive symptoms,

regardless of what I’m eating, because the disorder is neurological in

cause. Body systems never work alone; there are always interconnections.

I’ve

amazed my doctors, particularly my gastroenterologist, by my not needing pain

medication 24/7, as most patients with my disorder do. I have continued to work

full-time, unlike others with my digestive disorder. I haven’t

needed to return for another ERCP and sphincterotomy, haven’t needed a biliary

stent, which is something that most patients with Sphincter of Oddi dysfunction

require every few years. My Sphincter of Oddi has been recovering from the

occasional (once or twice a year) severe spasm on its own. I might just

be lucky, but I do give my diet (SCD foods) a lot of credit, as they don’t

stress my digestion too much. My liver and pancreatic functions are

tested twice a year; my enzyme levels fluctuate slightly but haven’t

yet returned to pre-sphincterotomy levels, nor has my bilirubin or other

markers. My routine blood work (also twice a year) continues to remain better

than expected (my cholesterol levels are excellent, especially for someone my

age), although some of my mineral levels are reaching deficiency status, so I

have to supplement some things and boost my electrolytes regularly. I was

diagnosed with pernicious anemia (B12 deficiency) 3 years ago, so I give myself

regular injections.

Two

of the symptoms connected with Sphincter of Oddi dysfunction is gastroparesis (slowly

emptying stomach) and dysphagia (difficulty swallowing). I have “failed”

two gastric emptying studies, one before my diagnosis, and another 2 years

ago. My gastroenterologist wanted to see if my stomach emptying levels

had improved; they hadn’t… I’ve had several

endoscopies, before and after diagnosis, checking for problems, trying to improve

my dysphagia. Although I have a narrower esophagus than most people, the

problem appears to be neuromuscular, so no improvement. I just live

with both conditions, and the pain and nausea and the impact on my nervous

system and vice versa.

You

do learn to cope with chronic symptoms. And you learn to deal with

deterioration in other body systems. SCD helps me remain as healthy as I

can be. I can live a fairly normal life. If I hadn’t found discovered

SCD and changed my food choices, I’d be in seriously bad shape by

now.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

>>>>>>>>>>>>>>>>>>>>>>>

3)

Is there anyone out there who can verify subjective improvement with objective

(labs) improvement after adoption of the SCD? Please elaborate on

blood/diagnostic imaging improvements.

[Guest guest]

Kim:

Thanks for that informative reply. If you don't mind me inquiring about your

labs...

1) You mention your bilirubin, that is has not yet reached pre-sphincteromy

levels. Am I to understand the sphincteromy lowered your TB (total bilirubin)?

What were your pre-sph. levels, and what are they now, if you don't mind me

asking? Curious, because I've chronic jaundice of TB 2 - 3x the upper limit of

normal of 17 (34 - 51; norm = <17), and my doctors are hastily telling me I've

Gilbert's, a gentic condition, without first running the tests which can

authenticate the theory. I've suspicions the elevated TB has something to do

with both the Celiac diagnosis and my chronic hyper-prolactinemia (high

prolactin commonly found in Celiac patients), and thus could be something much

more serious than 'benign' Gilbert's...

2) You also mentioned electrolytes. Very curious what your sodium, chloride,

potassium, and bicarb (AKA carbon dioxide) levels might be? I regularly check

mine, and don't seem to be having any problems here (Na = 142, K = 4.2, Cl =

107, HCO3 = 29). How much salt (sodium chloride) do you consume each day?

There is an incredible amount of controversy in the medical literature as to the

role of salt in electrolyte homestasis, which contorversy is very, very

frustrating given the fact that some 'experts' (MDs, Ph.D researchers) teach

salt is more-or-less toxic, whereas other 'experts' teach low-salt diets (let

alone no salt diets) are very harmful. Too much money behind these many

studies, I think, which causes endless disagreement where one would hope to find

some facts. After all, it's human health we're dealing with.

3) You mention neurology. My high prolactin levels are a major risk factor for

developing neuroendocrinological disease, so this is why I'm trying to find

others with former high prolactin, and whther they were able to reduce it

through diet alone, without recourse to drugs/surgery.

Thanks,

.

>

>

>

>

>

> As others have mentioned, Dr. Haas worked with children, and they are more

> likely to be able to successfully resume eating polysaccharides after their

> gut dysbiosis has restabilized. Adults usually have other health issues

> that play a role in " cure, " not to mention having to deal with long-term

> damage to their gut ecology, so for many adults remission is what they're

> looking for, and it takes time. Many stay on SCD even after remission

> because their digestions just don't work quite the same way again so there

> is a risk of developing symptoms. Individual variation is tremendous among

> people, not just in the SCD foods they can tolerate, but in their healing

> time and what they continue to eat after they've reached their healing

> point.

>

>

>

> I've been on SCD for more than six years; I hit my healing point during my

> 3rd year. I stay on SCD because it is the only method I've found that helps

> me keep my chronic symptoms under management. I was diagnosed with a

> somewhat uncommon digestive disorder, Sphincter of Oddi dysfunction. Unlike

> many others on SCD I have to be extremely careful with fiber, fat, spices

> and carbohydrates. There are no medications that can help specifically with

> this disorder, just alleviate some of the symptoms. I have symptoms every

> time I eat (and drink) but thanks to SCD I've learned to keep the symptoms

> minimal most of the time. I don't eat many of the permitted foods, but that

> is OK.

>

>

>

> There's a neurological component with my digestive disorder, and I've gone

> on to develop additional neuropathies and neurological conditions. So while

> my digestion is under management, my body has continued to deteriorate,

> albeit slowly. This happens. [shrug] I don't blame SCD or diet; it is just

> the way my body is deteriorating. I can cope with the ongoing deterioration

> better now that my digestive symptoms are minimal most of the time. Of

> course I go through regular cycles of more severe digestive symptoms,

> regardless of what I'm eating, because the disorder is neurological in

> cause. Body systems never work alone; there are always interconnections.

>

>

>

> I've amazed my doctors, particularly my gastroenterologist, by my not

> needing pain medication 24/7, as most patients with my disorder do. I have

> continued to work full-time, unlike others with my digestive disorder. I

> haven't needed to return for another ERCP and sphincterotomy, haven't needed

> a biliary stent, which is something that most patients with Sphincter of

> Oddi dysfunction require every few years. My Sphincter of Oddi has been

> recovering from the occasional (once or twice a year) severe spasm on its

> own. I might just be lucky, but I do give my diet (SCD foods) a lot of

> credit, as they don't stress my digestion too much. My liver and pancreatic

> functions are tested twice a year; my enzyme levels fluctuate slightly but

> haven't yet returned to pre-sphincterotomy levels, nor has my bilirubin or

> other markers. My routine blood work (also twice a year) continues to

> remain better than expected (my cholesterol levels are excellent, especially

> for someone my age), although some of my mineral levels are reaching

> deficiency status, so I have to supplement some things and boost my

> electrolytes regularly. I was diagnosed with pernicious anemia (B12

> deficiency) 3 years ago, so I give myself regular injections.

>

>

>

> Two of the symptoms connected with Sphincter of Oddi dysfunction is

> gastroparesis (slowly emptying stomach) and dysphagia (difficulty

> swallowing). I have " failed " two gastric emptying studies, one before my

> diagnosis, and another 2 years ago. My gastroenterologist wanted to see if

> my stomach emptying levels had improved; they hadn't. I've had several

> endoscopies, before and after diagnosis, checking for problems, trying to

> improve my dysphagia. Although I have a narrower esophagus than most

> people, the problem appears to be neuromuscular, so no improvement. I just

> live with both conditions, and the pain and nausea and the impact on my

> nervous system and vice versa.

>

>

>

> You do learn to cope with chronic symptoms. And you learn to deal with

> deterioration in other body systems. SCD helps me remain as healthy as I

> can be. I can live a fairly normal life. If I hadn't found discovered SCD

> and changed my food choices, I'd be in seriously bad shape by now.

>

>

>

> Kim M.

>

> SCD 6 years

>

> Sphincter of Oddi dysfunction 6+ years

>

> neurological & spinal deterioration 3+ years

>

>

>

> >>>>>>>>>>>>>>>>>>>>>>>

>

> 3) Is there anyone out there who can verify subjective improvement with

> objective (labs) improvement after adoption of the SCD? Please elaborate on

> blood/diagnostic imaging improvements.

>

[Guest guest]

I am new to the SCD and a new member to this group. I am constantly reading the

messages and making notes of things that may be useful now or in the future. I

have Crohns and my major sympton right now is my movements are either strictly

mucous or of some substance and thin. I experience some cramping before using

the bathroom and often, experience accidents because I don't have much control

of the movements. This particualr message prompted me to write because I am not

sure what other things I should be thinking of. Is the mucous simply my body's

way of showing it is experiencing inflammation, especially due to what I eat or

is there other things to consider? Is the Pentasa, Azathiaprine and LDN working?

What questions should I ask of my doctors or tests to consider? Hope this makes

sense!

> >

> >

> >

> >

> >

> > As others have mentioned, Dr. Haas worked with children, and they are more

> > likely to be able to successfully resume eating polysaccharides after their

> > gut dysbiosis has restabilized. Adults usually have other health issues

> > that play a role in " cure, " not to mention having to deal with long-term

> > damage to their gut ecology, so for many adults remission is what they're

> > looking for, and it takes time. Many stay on SCD even after remission

> > because their digestions just don't work quite the same way again so there

> > is a risk of developing symptoms. Individual variation is tremendous among

> > people, not just in the SCD foods they can tolerate, but in their healing

> > time and what they continue to eat after they've reached their healing

> > point.

> >

> >

> >

> > I've been on SCD for more than six years; I hit my healing point during my

> > 3rd year. I stay on SCD because it is the only method I've found that helps

> > me keep my chronic symptoms under management. I was diagnosed with a

> > somewhat uncommon digestive disorder, Sphincter of Oddi dysfunction. Unlike

> > many others on SCD I have to be extremely careful with fiber, fat, spices

> > and carbohydrates. There are no medications that can help specifically with

> > this disorder, just alleviate some of the symptoms. I have symptoms every

> > time I eat (and drink) but thanks to SCD I've learned to keep the symptoms

> > minimal most of the time. I don't eat many of the permitted foods, but that

> > is OK.

> >

> >

> >

> > There's a neurological component with my digestive disorder, and I've gone

> > on to develop additional neuropathies and neurological conditions. So while

> > my digestion is under management, my body has continued to deteriorate,

> > albeit slowly. This happens. [shrug] I don't blame SCD or diet; it is just

> > the way my body is deteriorating. I can cope with the ongoing deterioration

> > better now that my digestive symptoms are minimal most of the time. Of

> > course I go through regular cycles of more severe digestive symptoms,

> > regardless of what I'm eating, because the disorder is neurological in

> > cause. Body systems never work alone; there are always interconnections.

> >

> >

> >

> > I've amazed my doctors, particularly my gastroenterologist, by my not

> > needing pain medication 24/7, as most patients with my disorder do. I have

> > continued to work full-time, unlike others with my digestive disorder. I

> > haven't needed to return for another ERCP and sphincterotomy, haven't needed

> > a biliary stent, which is something that most patients with Sphincter of

> > Oddi dysfunction require every few years. My Sphincter of Oddi has been

> > recovering from the occasional (once or twice a year) severe spasm on its

> > own. I might just be lucky, but I do give my diet (SCD foods) a lot of

> > credit, as they don't stress my digestion too much. My liver and pancreatic

> > functions are tested twice a year; my enzyme levels fluctuate slightly but

> > haven't yet returned to pre-sphincterotomy levels, nor has my bilirubin or

> > other markers. My routine blood work (also twice a year) continues to

> > remain better than expected (my cholesterol levels are excellent, especially

> > for someone my age), although some of my mineral levels are reaching

> > deficiency status, so I have to supplement some things and boost my

> > electrolytes regularly. I was diagnosed with pernicious anemia (B12

> > deficiency) 3 years ago, so I give myself regular injections.

> >

> >

> >

> > Two of the symptoms connected with Sphincter of Oddi dysfunction is

> > gastroparesis (slowly emptying stomach) and dysphagia (difficulty

> > swallowing). I have " failed " two gastric emptying studies, one before my

> > diagnosis, and another 2 years ago. My gastroenterologist wanted to see if

> > my stomach emptying levels had improved; they hadn't. I've had several

> > endoscopies, before and after diagnosis, checking for problems, trying to

> > improve my dysphagia. Although I have a narrower esophagus than most

> > people, the problem appears to be neuromuscular, so no improvement. I just

> > live with both conditions, and the pain and nausea and the impact on my

> > nervous system and vice versa.

> >

> >

> >

> > You do learn to cope with chronic symptoms. And you learn to deal with

> > deterioration in other body systems. SCD helps me remain as healthy as I

> > can be. I can live a fairly normal life. If I hadn't found discovered SCD

> > and changed my food choices, I'd be in seriously bad shape by now.

> >

> >

> >

> > Kim M.

> >

> > SCD 6 years

> >

> > Sphincter of Oddi dysfunction 6+ years

> >

> > neurological & spinal deterioration 3+ years

> >

> >

> >

> > >>>>>>>>>>>>>>>>>>>>>>>

> >

> > 3) Is there anyone out there who can verify subjective improvement with

> > objective (labs) improvement after adoption of the SCD? Please elaborate on

> > blood/diagnostic imaging improvements.

> >

>

[Guest guest]

Different medications work with different people- so it would be hard to say

that one that works for someone else would be best for you. My doctor explained

to me that there were 2 schools of thought on this: one is to go with the one

that is mildest with the least side effects, the other is to use the most

powerful one to kick the inflammation. This is something you and your doctor can

discuss.

So, of course, the questions about how the drugs work and what side effects are

good ones. Some drugs work better on different areas of the GI tract as well, so

it would depend on where you would need them.

Labs vary according to your age and symptoms and condition. It would be

important to tell your doctor about anything you are worried about.

I guess the only wrong question is the one you don't ask!! I hope that you have

a doctor who is willing to listen and answer them.

The GI tract produces mucous as a protective barrier when it is inflamed. This

process is explained in BTVC. Anything can irritate it, including foods that you

are sensitive to, or poorly digested food, bacterial overgrowth, infection, and

so on. Reducing this irritation is one of the goals of SCD and also medication.

LDN works with the body to regulate the immune system. It is still in the

experimental stage because there is not much interest in funding it, but the few

studies suggest it has a good effect.

Despite the discussions here on labs and medications, if you want to be on SCD,

the main point of this board is to understand SCD and do it correctly. I hope

you find it helpful, and that you feel better soon.

PJ

> > >

> > >

> > >

> > >

> > >

> > > As others have mentioned, Dr. Haas worked with children, and they are more

> > > likely to be able to successfully resume eating polysaccharides after

their

> > > gut dysbiosis has restabilized. Adults usually have other health issues

> > > that play a role in " cure, " not to mention having to deal with long-term

> > > damage to their gut ecology, so for many adults remission is what they're

> > > looking for, and it takes time. Many stay on SCD even after remission

> > > because their digestions just don't work quite the same way again so there

> > > is a risk of developing symptoms. Individual variation is tremendous

among

> > > people, not just in the SCD foods they can tolerate, but in their healing

> > > time and what they continue to eat after they've reached their healing

> > > point.

> > >

> > >

> > >

> > > I've been on SCD for more than six years; I hit my healing point during my

> > > 3rd year. I stay on SCD because it is the only method I've found that

helps

> > > me keep my chronic symptoms under management. I was diagnosed with a

> > > somewhat uncommon digestive disorder, Sphincter of Oddi dysfunction.

Unlike

> > > many others on SCD I have to be extremely careful with fiber, fat, spices

> > > and carbohydrates. There are no medications that can help specifically

with

> > > this disorder, just alleviate some of the symptoms. I have symptoms every

> > > time I eat (and drink) but thanks to SCD I've learned to keep the symptoms

> > > minimal most of the time. I don't eat many of the permitted foods, but

that

> > > is OK.

> > >

> > >

> > >

> > > There's a neurological component with my digestive disorder, and I've gone

> > > on to develop additional neuropathies and neurological conditions. So

while

> > > my digestion is under management, my body has continued to deteriorate,

> > > albeit slowly. This happens. [shrug] I don't blame SCD or diet; it is

just

> > > the way my body is deteriorating. I can cope with the ongoing

deterioration

> > > better now that my digestive symptoms are minimal most of the time. Of

> > > course I go through regular cycles of more severe digestive symptoms,

> > > regardless of what I'm eating, because the disorder is neurological in

> > > cause. Body systems never work alone; there are always interconnections.

> > >

> > >

> > >

> > > I've amazed my doctors, particularly my gastroenterologist, by my not

> > > needing pain medication 24/7, as most patients with my disorder do. I have

> > > continued to work full-time, unlike others with my digestive disorder. I

> > > haven't needed to return for another ERCP and sphincterotomy, haven't

needed

> > > a biliary stent, which is something that most patients with Sphincter of

> > > Oddi dysfunction require every few years. My Sphincter of Oddi has been

> > > recovering from the occasional (once or twice a year) severe spasm on its

> > > own. I might just be lucky, but I do give my diet (SCD foods) a lot of

> > > credit, as they don't stress my digestion too much. My liver and

pancreatic

> > > functions are tested twice a year; my enzyme levels fluctuate slightly

but

> > > haven't yet returned to pre-sphincterotomy levels, nor has my bilirubin or

> > > other markers. My routine blood work (also twice a year) continues to

> > > remain better than expected (my cholesterol levels are excellent,

especially

> > > for someone my age), although some of my mineral levels are reaching

> > > deficiency status, so I have to supplement some things and boost my

> > > electrolytes regularly. I was diagnosed with pernicious anemia (B12

> > > deficiency) 3 years ago, so I give myself regular injections.

> > >

> > >

> > >

> > > Two of the symptoms connected with Sphincter of Oddi dysfunction is

> > > gastroparesis (slowly emptying stomach) and dysphagia (difficulty

> > > swallowing). I have " failed " two gastric emptying studies, one before my

> > > diagnosis, and another 2 years ago. My gastroenterologist wanted to see

if

> > > my stomach emptying levels had improved; they hadn't. I've had several

> > > endoscopies, before and after diagnosis, checking for problems, trying to

> > > improve my dysphagia. Although I have a narrower esophagus than most

> > > people, the problem appears to be neuromuscular, so no improvement. I

just

> > > live with both conditions, and the pain and nausea and the impact on my

> > > nervous system and vice versa.

> > >

> > >

> > >

> > > You do learn to cope with chronic symptoms. And you learn to deal with

> > > deterioration in other body systems. SCD helps me remain as healthy as I

> > > can be. I can live a fairly normal life. If I hadn't found discovered

SCD

> > > and changed my food choices, I'd be in seriously bad shape by now.

> > >

> > >

> > >

> > > Kim M.

> > >

> > > SCD 6 years

> > >

> > > Sphincter of Oddi dysfunction 6+ years

> > >

> > > neurological & spinal deterioration 3+ years

> > >

> > >

> > >

> > > >>>>>>>>>>>>>>>>>>>>>>>

> > >

> > > 3) Is there anyone out there who can verify subjective improvement with

> > > objective (labs) improvement after adoption of the SCD? Please elaborate

on

> > > blood/diagnostic imaging improvements.

> > >

> >

>

[Guest guest]

> 1) I've all of the Drs. Haas medical articles, as well as the book,

" Management of Celiac Disease " , and they stress repeatedly a normal diet can be

adopted in the vast majority of cases by 18 months. Yet, I'm surprised to learn

that very few modern SCDers go back to a normal diet at the end of 18 months, if

at all, which seems to be un-necessary, assuming " the Dr. [Haas] knows best " .

Have any of the readers of this message gone back to a reasonably normal diet

within 18 - 24 months, and can say, with Drs. Haas, " the SCD cured me " (by

" cure " both Drs. Haas and I mean polysaccharides can again be eaten without

injury being done to one's self).

Hey !

I am coming into this discussion way late (hey! I'm on vacation . I have

really enjoyed reading everyone's responses and I am so excited to hear about

people like you who could potentially change the face medicine (no pressure, ha

ha). I have been so inspired by the small progress I have made on this diet that

I have vowed to become a nutritional consultant, at the very least, if I can

" cure " myself.

I just wanted to add some food for thought about your above point (#1). I think

the reason why it takes us " modern " SCDers longer to get to that " cure " point is

because we are starting at a much lower baseline. By that, I mean that when Dr.

Haas published his research in 1951, his patients were not eating a diet

composed of bagels and cereal for breakfast, pizza for lunch, and macaroni and

cheese for dinner. Their cabinets weren't filled with boxed snacks, their

freezers weren't stocked with microwave dinners and eating fruit didn't mean

eating a fruit roll-up... I truly believe that the typical American diet is so

poor now, that we have much more damage to undo than our counterparts 60 years

ago.

Anyway, I am excited to hear what you come up with and happy to help in any way.

Feel free to contact me off the list if you want any info on what my doctors

call " a very bad case of Crohn's " (they have been urging me over the past few

years to have the rest of my 3-4 " of colon removed since no drugs but prednisone

seem to work for me).

-Joanna

SCD 9/2009, Crohn's 1992, 20mg Prednisone

[Guest guest]

I mostly don't jump on this train..

But I must say SCD changed my life and then adding LDN on top of that has just

been incredible for me. First time around I learned I had Lyme disease so I

took care of that.. It still helped my gut back then just cognitive issues got

worse.

But after lyme was erradicated my goodness does it help!

It's amazing. I wish I would of found this combo sooner.

I also really hope it helps so that I won't form so much scar tissue in my GI

tract and help clear up the rectal inflammation.

Jodi

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > > As others have mentioned, Dr. Haas worked with children, andthey

> >>> are more

> >>> > > > likely to be able to successfully resume eating polysaccharides

> >>> after their

> >>> > > > gut dysbiosis has restabilized. Adults usually have other health

> >>> issues

> >>> > > > that play a role in " cure, " not to mention having to deal with

> >>> long-term

> >>> > > > damage to their gut ecology, so for many adults remission iswhat

> >>> they're

> >>> > > > looking for, and it takes time. Many stay on SCD even after

> >>> remission

> >>> > > > because their digestions just don't work quite the same wayagain

> >>> so there

> >>> > > > is a risk of developing symptoms. Individual variation is

> >>> tremendous among

> >>> > > > people, not just in the SCD foods they can tolerate, but intheir

> >>> healing

> >>> > > > time and what they continue to eat after they've reached their

> >>> healing

> >>> > > > point.

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > > I've been on SCD for more than six years; I hit my healing point

> >>> during my

> >>> > > > 3rd year. I stay on SCD because it is the only method I've found

> >>> that helps

> >>> > > > me keep my chronic symptoms under management. I was diagnosed

> >>> with a

> >>> > > > somewhat uncommon digestive disorder, Sphincter of Oddi

> >>> dysfunction. Unlike

> >>> > > > many others on SCD I have to be extremely careful with fiber,

> >>> fat, spices

> >>> > > > and carbohydrates. There are no medications that can help

> >>> specifically with

> >>> > > > this disorder, just alleviate some of the symptoms. I have

> >>> symptoms every

> >>> > > > time I eat (and drink) but thanks to SCD I've learned to keepthe

> >>> symptoms

> >>> > > > minimal most of the time. I don't eat many of the permitted

> >>> foods, but that

> >>> > > > is OK.

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > > There's a neurological component with my digestive disorder, and

> >>> I've gone

> >>> > > > on to develop additional neuropathies and neurological

> >>> conditions. So while

> >>> > > > my digestion is under management, my body has continued to

> >>> deteriorate,

> >>> > > > albeit slowly. This happens. [shrug] I don't blame SCD or diet;

> >>> it is just

> >>> > > > the way my body is deteriorating. I can cope with the ongoing

> >>> deterioration

> >>> > > > better now that my digestive symptoms are minimal most of the

> >>> time. Of

> >>> > > > course I go through regular cycles of more severe digestive

> >>> symptoms,

> >>> > > > regardless of what I'm eating, because the disorder is

> >>> neurological in

> >>> > > > cause. Body systems never work alone; there are always

> >>> interconnections.

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > > I've amazed my doctors, particularly my gastroenterologist, bymy

> >>> not

> >>> > > > needing pain medication 24/7, as most patients with my disorder

> >>> do. I have

> >>> > > > continued to work full-time, unlike others with my digestive

> >>> disorder. I

> >>> > > > haven't needed to return for another ERCP and sphincterotomy,

> >>> haven't needed

> >>> > > > a biliary stent, which is something that most patients with

> >>> Sphincter of

> >>> > > > Oddi dysfunction require every few years. My Sphincter of Oddi

> >>> has been

> >>> > > > recovering from the occasional (once or twice a year) severe

> >>> spasm on its

> >>> > > > own. I might just be lucky, but I do give my diet (SCD foods) a

> >>> lot of

> >>> > > > credit, as they don't stress my digestion too much. My liver and

> >>> pancreatic

> >>> > > > functions are tested twice a year; my enzyme levels fluctuate

> >>> slightly but

> >>> > > > haven't yet returned to pre-sphincterotomy levels, nor has my

> >>> bilirubin or

> >>> > > > other markers. My routine blood work (also twice a year)

> >>> continues to

> >>> > > > remain better than expected (my cholesterol levels areexcellent,

> >>> especially

> >>> > > > for someone my age), although some of my mineral levels are

> >>> reaching

> >>> > > > deficiency status, so I have to supplement some things and boost

> >>> my

> >>> > > > electrolytes regularly. I was diagnosed with pernicious anemia

> >>> (B12

> >>> > > > deficiency) 3 years ago, so I give myself regular injections.

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > > Two of the symptoms connected with Sphincter of Oddi dysfunction

> >>> is

> >>> > > > gastroparesis (slowly emptying stomach) and dysphagia (difficulty

> >>> > > > swallowing). I have " failed " two gastric emptying studies, one

> >>> before my

> >>> > > > diagnosis, and another 2 years ago. My gastroenterologist wanted

> >>> to see if

> >>> > > > my stomach emptying levels had improved; they hadn't. I've had

> >>> several

> >>> > > > endoscopies, before and after diagnosis, checking for problems,

> >>> trying to

> >>> > > > improve my dysphagia. Although I have a narrower esophagus than

> >>> most

> >>> > > > people, the problem appears to be neuromuscular, so no

> >>> improvement. I just

> >>> > > > live with both conditions, and the pain and nausea and theimpact

> >>> on my

> >>> > > > nervous system and vice versa.

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > > You do learn to cope with chronic symptoms. And you learn todeal

> >>> with

> >>> > > > deterioration in other body systems. SCD helps me remain as

> >>> healthy as I

> >>> > > > can be. I can live a fairly normal life. If I hadn't found

> >>> discovered SCD

> >>> > > > and changed my food choices, I'd be in seriously bad shape bynow.

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > > Kim M.

> >>> > > >

> >>> > > > SCD 6 years

> >>> > > >

> >>> > > > Sphincter of Oddi dysfunction 6+ years

> >>> > > >

> >>> > > > neurological & spinal deterioration 3+ years

> >>> > > >

> >>> > > >

> >>> > > >

> >>> > > > >>>>>>>>>>>>>>>>>>>>>>>

> >>> > > >

> >>> > > > 3) Is there anyone out there who can verify subjective

> >>> improvement with

> >>> > > > objective (labs) improvement after adoption of the SCD? Please

> >>> elaborate on

> >>> > > > blood/diagnostic imaging improvements.

> >>> > > >

> >>> > >

> >>> >

> >>>

> >>>

> >>

> >

>

>

> --

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