Re: New to SCD................bifidus and VSL#3

[Guest guest]

I tried it (crohn's dx 3/02) and it literally rocked my world (guts).  It was scary, probably the most I've been since starting SCD.  I read three lists and I'd say there are two positive posts (not sure they are IBDer's) to the rest being negative/non-effective.

 

Just not a lot of cash to blow on cure-alls and there are lots of them out there.  My own doctor asks me each visit about a probiotic on the shelf that is *doctor recommended*, I just say no, I make yogurt and take yogurt caps with acidolpholus.  It seems to be Greek to her except for the one a drug rep gave her samples for to give me--and other IBDers.

 

So basically, Elaine must have known enough to deem it illegal because you will rarely see rave reviews here.  I think actually I've only read one person.

 

Just trying to give some background.  People are always, always looking for new things, new ways to liven up the diet.  Most of the time (imho) the book is always always safe to go back to. 

 

debbie 41 cd

scd 12/05

ldn 3/10

On Tue, May 11, 2010 at 10:12 AM, Wizop Marilyn L. Alm wrote:

 

At 07:00 AM 5/11/2010, you wrote:

Elaine Gottscahall said herself that she wasn't sure about bifidus so she erred on the side of caution and said it was illegal. There are different views but my view and indeed a lot of doctors that probiotics and bifidus are good for us. After all they live in a healthy perosn's gut. Indeed many docotors now think that IBD is caused by a compromised gut flora so taking anything to restore the proper gut flora is a good thing. VSL#3 is the most potent probiotic on the market at 450 billion per capsule.

I have observed, over the nearly nine years I've been following SCD, that bifidus frequently causes flares.I've gotten hold of it twice -- once a deliberate experiment based on comments like " bifidus is GOOD for you! " and once accidentally.

Both times I had vicious gut cramps and explosive diarrhea.VSL #3 is NOT SCD legal.

— 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]

At 09:27 AM 5/11/2010, you wrote:

This is an SCD site and I

accept that we must follow the 'rules' of the diet but I was merley

pointing out that even Elaine herself wasn't sure about Bifidus and

things might have moved on since then.

Yes, and science " moved on " when it abandoned the Haas diet and

said that those of us with gut issues only needed to go gluten-free! Oh,

wait -- it was only CELIACS who needed to go gluten-free... if going

gluten-free didn't solve the issue, then you clearly weren't a celiac.

Sure, you have gut issues, and we don't know what to do about it (because

we'll certainly never recommend that old, out-dated diet!), but you can

just go home and deal with it.

We moan about doctors who have

their head stuck in the sand so perhaps we should not be guilty of doing

the same thing.

It's not a matter of sticking my head in the sand. It's a matter of

having seen -- not only through my own experience, but through the

reports of other SCDers, people with Crohns or UC, as well as " just

IBS, " that bifidus can cause major issues. I've also heard reports

that bifidus can cause major issues for kids on the spectrum.

There was a lot of talk here

about having tinned tomatoes recently and I believe that the people

involved decided that certain tinned tomaotes were ok which seems

reasonable to me. However BTVC says that tinned tomatoes are illegal,

surely it is only right that we move forward in our

thinking.

Elaine put in place a method for determining if a product might be

SCD-legal. That is the method used for obtaining the letter about Cento

tomatoes which were discussed.

There's a big difference between approving a food product and determining

a probiotic which has far-reaching effects on our systems.

Try this study:

" Intestinal Floras of Populations That Have a High Risk of Colon

Cancer

APPLIED AND ENVIRONMENTAL MICROBIOLOGY, Sept. 1995, p. 3202-3207 Vol. 61,

No. 9

The study finds that populations with the highest colon cancer risk have

a higher number of bifido bacteria than populations with the lowest risk.

The authors were very surprised at this result since bifido bacteria is a

" good " bacteria.

Or this testimonial:

writes:

I am one who had used yoghurt containing Bifidus as my starter the first

eight months on the diet and after a few back to back flares where

nothing helped, Lucy clued me in that the Bifidus may have overgrown in

my colon and therefore caused my endless flare. Sure enough, after I

switched to the powdered yogourmet starter I literally came out of the

flare overnight! I am a big proponent.

I know that Marilyn is against

Bifidus and of course she is certainly entitled to her opinion but please

correct me if I am wrong but doesn't Marilyn have IBS as opposed to IBD?

It may well be that Marilyn has SIBO. I am sure Marilyn will now join in

here.

What I have is undiagnosed. I do not have Crohn's or UC (confirmed by

colonoscopy), nor do I have the " family disease " of

diverticulitis. I suffered for 25 years with soft, mushy stool, and

unpredictable urgency. Pre-SCD, whenever we went out to eat, I

lined my underwear with toilet paper because I knew the likelihood of

making it home without an accident was virtually nonexistent.

Ironically, I was using an acidophilus and bifidus mixed probiotic for a

number of years. It didn't help, and, based on my reaction to bifidus

after going SCD, I suspect it contributed to the problem.

So Mara, thanks for your well

meaning advice but I hope you would agree that certain things are not

black and white and even Elaine had her doubts about whether Bifidus was

illegal.

Please show me where it says " Elaine had her doubts. " And

please do not recommend SCD-illegals on this list.

—

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]

> Mara - thanks for your reply, very interesting. How do you know that Bifidus

causes serious overgrowth?

People have piped up and reported that news back from stool tests.

> I am not extolling the virtues of VSL#3, far from it in fact. Many people take

all sorts of probiotics and get varying results. The difficulty is finding the

one that suits you and that is so hard as their are many, many strains.

> Some people are deficient in Bifidus (me for one having had a stool test). I

have just read a research paper that argues that people who have IBD and other

gut problems are likely to be deficient in bifidus.

See, here's the thing - there are so many different forms of IBD from so many

different genetic mutational causes, that I don't think generalizing here is

helpful.

At this point, the state of the science is like the old homily where 10 blind

people are describing what an elephant " looks like " and they each are touching

a different part, and all their descriptions are utterly unlike.

Maybe in 10-20 years, when all the causes of IBD have been discovered in the

genome.

> Of course every one is different and indeed a lot of people on SCD cannot

tolerate yogurt which is one of the staple things of the diet.

> This is an SCD site and I accept that we must follow the 'rules' of the diet

but I was merley pointing out that even Elaine herself wasn't sure about Bifidus

and things might have moved on since then.

Oh I agree with you, there. I was really exercised by this, too, during the

months I first

started SCD - also about the fact that there was no mechanism in place to check

for

new products that might be legal. Now, I don't care so much.

> We moan about doctors who have their head stuck in the sand so perhaps we

should not be guilty of doing the same thing.

> There was a lot of talk here about having tinned tomatoes recently and I

believe that the people involved decided that certain tinned tomaotes were ok

which seems reasonable to me. However BTVC says that tinned tomatoes are

illegal, surely it is only right that we move forward in our thinking.

> I know that Marilyn is against Bifidus and of course she is certainly entitled

to her opinion but please correct me if I am wrong but doesn't Marilyn have IBS

as opposed to IBD? It may well be that Marilyn has SIBO. I am sure Marilyn will

now join in here.

> So Mara, thanks for your well meaning advice but I hope you would agree that

certain things are not black and white and even Elaine had her doubts about

whether Bifidus was illegal.

I don't think anything about this is black and white and I also believe, from

anecdotes

I've heard, that some forms of bifidus can help some people as well as that it

hurts

others. If you know for sure it helps you, take it. And I'd be interested in

hearing about

that if it continues to work for you. Just keep in mind there might be

some problems down the road. So if your healing gets to a certain point then

plateaus off or even goes backward, this is something to keep in mind.

Regards,

Mara

> Regards

> Steve

>

>

>>>>

>>>>> never heard of vsl#3..........how did you find out it was illegal?

>>>>

>>>>

>>>> It seems to be recommended by a lot of different doctors/people, but

>>>> it has bifidus in it (I think?) which isn't SCD legal.

>>>>

>>>> Peace =)

>>>> Alyssa 16 yo

>>>> UC April 2008, dx Sept 2008

>>>> SCD June 2009 (restarted)

>>>> Azathioprine 75 mg 1x per day

>>>> Prednisone 30 mg 1x per day

>>>>

>>>

>>>

>>>

>>>

>>> ------------------------------------

>>>

>>>

[Guest guest]

To all you lovely people,I am not here to get involved in an argument about bifidobacteria so I will try to be brief.

1) I have only been on SCD 5mths but a few months back there a was discussion on these boards about bifidus and I believe a doctor who is pro SCD posted a copy of an extract of correspondence with Elaine herself where Elaine basically said that she wasn't sure wether to make it illegal.2) If people get a reaction to it this may in a strange way be a good thing. This could be a HERX effect which means that it is actually doing some good and causing die off. When this happens one should cut down the intake and maybe not take it for a few days and then reintroduce it slowly. Now I am not a doctor and I stress that this COULD be a HERX effect which might actually be a good thing.3) I have only been here for a few months but I have seen numerous people get a bad reaction due to all manner of things even though they are LEGAL. These things are not then banned, because we all realise that our guts are basically a nightmare and what is good for one is often not good for others. I have already seen a number of people get bad reaction here to yogurt, this seems quite common, but do we say that it must be the probiotics in the yogurt, no we do not.4) There is one strain of bifidobateria that has had the best results of any other probiotic in clinical trials and that is bifidobacteria infantis. Admittedly this was for IBS but nevertheless it is I believe quite compelling evidence see http://www.medicalnewstoday.com/articles/143333.php which among other things says:- Clinical evidence and support for Bifantis continues to grow. Bifidobacterium infantis 35624, discovered in the early 1990s by microbiologists at Alimentary Health in Cork, Ireland in partnership with P & G, has been independently tested and evaluated in several clinical trials conducted with humans. This latest review provides continued clinical evidence of Bifantis efficacy in helping to manage a range of gastrointestinal issues including abdominal pain, bloating, constipation, diarrhea, gas and urgency.

We all know that SCD has helped a lot of people but we also know that SCD doesn't work for everyone. I know this is an SCD board but I firmly believe that if someone asks about probiotics which are still very much in their infancy they should be told that perhaps they should either try them or do further research to make up their own mind. And if myself and others say that maybe bifidus might help then I think it is wrong to shout me down as I am trying to give a reasoned argument rather than DO THIS AND DONT DO THAT.

Well that wasn't very "brief" was it.

Good luck to you all.

Steve

[Guest guest]

Hi Mara, Steve and the rest of the SCDers:

I am in awe of how much you all know....kudos to you all. I am just a newbie with all this, and I am trying to be an active participant in my own health. I cannot tolerate dairy on the SCD, as well as some other veggies(onions/garlic...etc)....so as I have been told I need some form of probiotic, as I cannot ingest the good bacteria from yogurt.

Cynde

[Guest guest]

There are legal probiotics from GI prohealth, and I believe other sources too.

SCDophilus from GI prohealth is legal.

PJ

>

>

> Hi Mara, Steve and the rest of the SCDers:

> I am in awe of how much you all know....kudos to you all. I am just a newbie

with all this, and I am trying to be an active participant in my own health. I

cannot tolerate dairy on the SCD, as well as some other

veggies(onions/garlic...etc)....so as I have been told I need some form of

probiotic, as I cannot ingest the good bacteria from yogurt.

>

> Cynde

>

[Guest guest]

At 04:17 PM 5/11/2010, you wrote:

We all know that SCD has helped

a lot of people but we also know that SCD doesn't work for everyone. I

know this is an SCD board but I firmly believe that if someone asks about

probiotics which are still very much in their infancy they should be told

that perhaps they should either try them or do further research to make

up their own mind. And if myself and others say that maybe bifidus might

help then I think it is wrong to shout me down as I am trying to give a

reasoned argument rather than DO THIS AND DONT DO THAT.

What I do is tell people what is and is not SCD legal.

I can talk about my experiences and those of people I know regarding

reactions.

I'm well aware that the study of probiotics is in its infancy.

I also know that doctors frequently recommend pure crap when it comes to

diets and to what is SCD-legal.

Nine times out of ten when someone says SCD doesn't work, when we dig

into it, we'll find errors in application -- the use of processed foods,

the use of non-permitted probiotics, etc. etc.

H-ll, when the question of cocoa butter came up, I researched it, and

came to the conclusion that by the parameters Elaine had laid out, cocoa

butter was legal. I said so on the list. And got screamed

at.

In addition, my in-box filled up with vicious hate-mail about how I was

trying to change Elaine's diet, that I called myself an SCDer, but I

wasn't, and on and on and on. Well, funny thing. Someone finally popped

up with proof that Elaine said cocoa butter was OK.

I have no problem with people doing research. I just want people to be

fully aware that bifidus is NOT at all SCD-legal, that it can cause some

horrendous reactions.

I expect people to do research. But I also expect them to follow the

parameters of SCD as Elaine wrote it. Bifidus is SCD-illegal.

You don't want to be shouted down? Don't recommend SCD-illegals.

—

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]

At 07:54 PM 5/11/2010, you wrote:

has anyone ever taken

Primal Defense by Garden of Life and is it legal for SCD

It is not SCD-legal.

http://www.breakingtheviciouscycle.info/knowledge_base/kb/primal_defense.htm

—

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]

No, Primal Defense is not legal. It also contains soil probiotics which are a

controversial topic as well.

PJ

> >>>>

> >>>>> never heard of vsl#3....... ...how did you find out it was illegal?

> >>>>

> >>>>

> >>>> It seems to be recommended by a lot of different doctors/people, but

> >>>> it has bifidus in it (I think?) which isn't SCD legal.

> >>>>

> >>>> Peace =)

> >>>> Alyssa 16 yo

> >>>> UC April 2008, dx Sept 2008

> >>>> SCD June 2009 (restarted)

> >>>> Azathioprine 75 mg 1x per day

> >>>> Prednisone 30 mg 1x per day

> >>>>

> >>>

> >>>

> >>>

> >>>

> >>> ------------ --------- --------- ------

> >>>

> >>>

[Guest guest]

I couldn't agree more with the points that Steve is bringing up. I for one,

have had success using VSL3 and have always known and acknowledged that it is

SCD illegal. There was a time where all I was doing was SCD (no meds either)

and while it made life more manageable, I could not get beyond a certain point.

The yogurt did NOT ever agree with me. I had to keep trying things to see what

would work. For me, VSL3 works and the yogurt does not.

I will echo what everyone says regardless of legal vs. illegal, we all know our

own bodies and what works for one may not for another and vice versa. I respect

and eat SCD but stay open to what helps me.

I appreciate the open discussions about things that are posted on this board and

continue to learn new things from it.

-

UC 9/10

SCD 11/10

>

>

> To all you lovely people,

> I am not here to get involved in an argument about bifidobacteria so I

> will try to be brief.

>

> 1) I have only been on SCD 5mths but a few months back there a was

> discussion on these boards about bifidus and I believe a doctor who is

> pro SCD posted a copy of an extract of correspondence with Elaine

> herself where Elaine basically said that she wasn't sure wether to make

> it illegal.

> 2) If people get a reaction to it this may in a strange way be a good

> thing. This could be a HERX effect which means that it is actually doing

> some good and causing die off. When this happens one should cut down the

> intake and maybe not take it for a few days and then reintroduce it

> slowly. Now I am not a doctor and I stress that this COULD be a HERX

> effect which might actually be a good thing.

> 3) I have only been here for a few months but I have seen numerous

> people get a bad reaction due to all manner of things even though they

> are LEGAL. These things are not then banned, because we all realise that

> our guts are basically a nightmare and what is good for one is often not

> good for others. I have already seen a number of people get bad reaction

> here to yogurt, this seems quite common, but do we say that it must be

> the probiotics in the yogurt, no we do not.

> 4) There is one strain of bifidobateria that has had the best results of

> any other probiotic in clinical trials and that is bifidobacteria

> infantis. Admittedly this was for IBS but nevertheless it is I believe

> quite compelling evidence see

> http://www.medicalnewstoday.com/articles/143333.php

> <http://www.medicalnewstoday.com/articles/143333.php> which among other

> things says:- Clinical evidence and support for Bifantis continues to

> grow. Bifidobacterium infantis 35624, discovered in the early 1990s by

> microbiologists at Alimentary Health in Cork, Ireland in partnership

> with P & G, has been independently tested and evaluated in several

> clinical trials conducted with humans. This latest review provides

> continued clinical evidence of Bifantis efficacy in helping to manage a

> range of gastrointestinal issues including abdominal pain, bloating,

> constipation, diarrhea, gas and urgency.

>

> We all know that SCD has helped a lot of people but we also know that

> SCD doesn't work for everyone. I know this is an SCD board but I firmly

> believe that if someone asks about probiotics which are still very much

> in their infancy they should be told that perhaps they should either try

> them or do further research to make up their own mind. And if myself and

> others say that maybe bifidus might help then I think it is wrong to

> shout me down as I am trying to give a reasoned argument rather than DO

> THIS AND DONT DO THAT.

>

> Well that wasn't very " brief " was it.

>

> Good luck to you all.

>

> Steve

>

[Guest guest]

I thought that was an interesting article about bifidus being the

only thing that can help IBS. I would agree, we are all different

and probably have different sets of good and bad bacteria in our

bowels. However, the above statement simply is not true. Not

universally, that is. My diagnoses is IBS, and guess what? As I come

up on 10 months on SCD, it has greatly helped my IBS and certainly

without bifidus! It was even noticeable in just a few days (probably

because I was pretty close to the diet anyhow and just had to ditch

rice). I am perfectly willing to agree that later, perhaps much

later, we can benefit from more types of bacteria, but.... isn't that

the point of the yogurt? To get various strains in? I'm about to get

brave enough to try yogurt, but so far I've gotten much much better

with the diet and l. acidophilus and good, live, legal sauerkraut.

[Guest guest]

- pleased to hear that you are doing so well. You perhaps misread my post

because I certainly wasn't suggesting that bfidus is the only thing that could

help IBS. In fact nothing could be further from the truth. The article was

commenting on a clinical trial which showed that Bifidus Infantis was the most

successful probioitic in treating IBS as compared to the other probiotics on

trial.

As far as I am aware, and I could be wrong, but I believe that yogurt normally

only contains 3 strains of probiotics, one of which will be lactobacillus

acidophillus no doubt. You will not find a bifidobacteria probiotic in the

yogurt. There is nothing wrong with sauerkraut at all but maybe you will enjoy

the yogurt as well.

Good luck.

Steve

SCD - 5mths

Mirtazapine 30mgs

Constant nausea and stomach discomfort 20mths

>

> I thought that was an interesting article about bifidus being the

> only thing that can help IBS. I would agree, we are all different

> and probably have different sets of good and bad bacteria in our

> bowels. However, the above statement simply is not true. Not

> universally, that is. My diagnoses is IBS, and guess what? As I come

> up on 10 months on SCD, it has greatly helped my IBS and certainly

> without bifidus! It was even noticeable in just a few days (probably

> because I was pretty close to the diet anyhow and just had to ditch

> rice). I am perfectly willing to agree that later, perhaps much

> later, we can benefit from more types of bacteria, but.... isn't that

> the point of the yogurt? To get various strains in? I'm about to get

> brave enough to try yogurt, but so far I've gotten much much better

> with the diet and l. acidophilus and good, live, legal sauerkraut.

>

>

>

[Guest guest]

At 08:30 PM 5/12/2010, you wrote:

All that being said, I agree,

that if someone inquires about an SCD illegal, it should be discussed but

should be noted as an illegal. Healthy discussions get us all researching

and learning more! I think there were some valid points that Steve

brought up and there are a variety of probiotics that exist that are

still " food for thought " (pun intended).

I agree that discussion is healthy, but this is an SCD list, not a

generic alternative medicine list.

I'm also aware that sometimes medicinals which are not SCD legal are

necessary for health reasons. Recommending them to everyone on the

list is, however, inappropriate.

I understand about the so-called " necessary illegals, " because

I require a supplement to control muscle spasm in my back which happens

to be illegal. I don't discuss it on the list, however. I won't recommend

it to SCDers. And I will state unequivocally, that while my supplement is

better than soma compound with codeine, it has still slowed my healing

significantly, just as Elaine predicted when I discussed it with her in

2001.

It could be interesting to go over exactly what you are eating to see

what possible problem foods might have crept in. Do you keep a food

diary?

I will second Mara's suggestion that you look into low dose naltrexone.

—

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]

Alyssa - fecal transplantation is where you are implanetd with the feces of a

healthy person. It will not be SCD legal because it will have bifidus in it.

Anyway there have been some truly remarkable results for UC and Chron's with

this threapy. Certainly offers hope for now and even more for the future.

Steve

SCD-5mths

>

> > Talking of which I am seriously thinking of trying fecal

> > transplantation but I am wondering if it is legal or not?

>

>

> SCD legal? I'm assuming its fine, since you aren't actually ingesting

> anything. From looking at Wikipedia, it looks like it's been very

> successful in UC; if you do decide to go this route let us know how it

> goes!!! It might be just the thing to get some people jump started in

> healing.

>

> Peace =)

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 75 mg 1x per day

> Prednisone 30 mg 1x per day

>