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Healing your gut with Diet II

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DaveF
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Posted 1/16/2015 6:40 AM (GMT -8)
The purpose of starting the original thread was to share with folks links/research that 1) supports using SCD to go into remission and 2) to point out how incomplete the research is on drugs that GI's prescribe and 3) to point out that the GI association guide is written by docs who are at least partially funded by big pharma.

In summary the original thread was started to provide at least some hope beyond very strong drugs, 75% chance of surgery, ....

The approach was to provide enough evidence/research to make my point credible. Some folks jumped in to have a valid discussion others did their usual, if I just say enough silliness, it will derail the conversation. I will not address the second lot.

My position - SCD works for many. I believe this because 1) The science referenced in Breaking the Vicious Cycle 2) I chat with folks daily that tell me about their success treating Crohn's 3) the research from organizations I respect including Stanford, Harvard, Rush and others 4) Leading organizations are incorporating it into their treatment protocol 5) There is tons of research showing that folks with Crohn's have Dysbiosis 6) Rush study shows that SCD addresses this 7) Research into the micro biome is exploding and none of it fundamentally contradicts SCD. 8) I was told by my doc that I would be taking stronger and stronger drugs for the rest of my life and I have a 75% chance of surgery in the next few years and diet has nothing to do with it and not only does this not make sense, but there is no way I am going to just accept this fate 9) When you look at the what the GI association says, the statistics are brutal, there is tons of missing basic research on the brutal drugs they freely prescribe and it was written by folks who are least partially funded by big pharma 10) Over the last few years, changing gut bacteria has grown into a 30 billion dollar industry 11) There is not one research paper that says Crohn's folks do not have a messed up gut flora
Everything fits together. It may not work for all, but it works for most. Given the alternatives, it is more than worth it to give it a try.

Ambling
When I reread your posts I am not sure what your position is. I understand that there a number of points in SCD you feel are wrong but what is the next step? Instead of trying to debate point by point, let me ask you the following please.

Do you believe that diet can substantially help to heal Crohn's? (Meaning heal ulcers, close fistulas, regain energy,..)

Do you believe that one of the characteristics of Crohn's folks is Dysbiosis?

Do you believe that when in Dysbiosis we experience all the bad symptoms of Crohn's, so our objective should be to get the gut flora in balance?

If no to the above, what should we focus on to achieve healing (t cells, antigens, ...) and how?
Or is there nothing to be done but take the drugs, cross your fingers and hope you are one of the lucky ones who does not need surgery and bad drugs?

As an aside I intend to "You might ask your GI what type of Crohns you have. They must know whether it is crohns- ileitis, jejunitis, ileocolitis, or crohns-colitis. Ask whether biopsies confirmed your diagnosis, and whether granulomas, apthous ulcers or skip lesions were found." Thank you

Iamcurious

I would summarize your position as 1) SCD does not make a lot of sense for a bunch of reasons and 2) folks should keep a food a food journal and this will provide the information they need. This is correct because we are all individuals so there is no prescribed diet that will help most Crohn's folks. I realize this is a summary, please correct me if I am wrong. If I am wrong the following questions might not make sense but can you please answer the following

1) Do you believe any diet, no matter what or how you get there will result in substantial healing? (heal ulcers, close fistulas,...)

2) Have you achieved substantial healing with the above approach?

3) Do you have any research that supports your position? My guess is no because "I actually don't pay attention to what the official studies say anymore than I pay attention to what the official diets proclaim. I listen to my gut, and my gut only."

BRelaxed

I understand your position to be - I tried SCD, it did not work for me. I am doing everything I can to control this DD, and that cannot include experimenting with a bunch of food that is probably going to hurt me not help me. My heart goes out to you and anyone who is your position. I wish I had something to offer.

Beave

From the limited posts I took away - Probiotics do not work. Valid or not valid it seems the following questions might make sense

Do you believe that diet can substantially help to heal Crohn's? (Meaning close ulcers, close fistulas, regain energy,..)

Do you believe that one of the characteristics of Crohn's folks is Dysbiosis?

Do you believe that when in Dysbiosis we experience all the bad symptoms of Crohn's, so our objective should be to get the gut flora in balance?

If no to the above, what should we focus on to achieve healing (t cells, antigens, ...) and how?
Or is there nothing to be done but take the drugs, cross your fingers and hope you are one of the lucky ones who does not need surgery and bad drugs?

CanadaMark
I took away from your posts - "It's simply the reduction in dietary antigens" or in layman speak irritants. If we reduce the irritants we will heal. You did not say it but if that is the case it must NOT be about dysbiosis.

1) What research have you seen that supports your position of it is all about dietary antigens?

2) SCD is about getting the gut bacteria back in balance, is SCD a good diet?

3) If we remove antigens will it result in measurable healing?

4) What is the best diet to effect the greatest healing? Can you provide research?


As you can see I have raised the conversation up. I am trying to get to, What do you believe is the best path to avoid drugs and surgery? Do you have any research to support your position? Who is incorporating your approach?

If we address this, then it seems to me, we will discuss healing options and not spend a lot of time on why someone else's position is wrong. Readers (including me) can look at the supporting information and make a decision.
Healing thoughts
Dave
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kazbern
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Posted 1/16/2015 7:20 AM (GMT -8)
Dave, your approach is interesting but still not open. You are clearly advocating for SCD and wish to denigrate pharmaceuticals because of inadequate research or bias among physicians. The fact is that there is even less adequate research into dietary affects on disease. Also, as many much more knowledgable people posted in the other thread, there are serious questions raised by current thinking about what is recommended by the seminal work on SCD.

I am troubled by the conflation of the terms "diet" with SCD. SCD is purported to be one thing, but when you dig in you see that most people who "follow" SCD actuallly do a lot of things that make sense to them as individuals and have little to do with anything Elaine Gottschall wrote about in her book.

That's like me saying I "take meds," when I really mean I take my meds sometimes, but not in the prescribed doses. This is one of the reasons why excellent studies are really hard to do on chronic illness. People are poor reporters of their own adherence to prescriptions of anything, whether that be diet or medications.

Once long ago I heard that pharmaceutical researchers were all wanting to do their drug trials in Germany. In Germany, the cultural norm is to do what you're told and to report honestly about what you have done. Compliance rates are very high there compared to the US and many other places. This board has few or no Germans. Perhaps if we lived in Germany we would not have IBD.
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DaveF
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Posted 1/16/2015 8:00 AM (GMT -8)
GM Kazbern
I am responding because it seems to me you are wishing to participate in a way where a good exchange can happen. I am trying to raise this up, to your understanding of the impact of diet and not mine (I have stated mine) but I will make a fast response.

"wish to denigrate pharmaceuticals because of inadequate research or bias among physicians"
My position is most of the drugs are scary as all heck. The side effects are really scary and the effectiveness is not that great. And in addition to that there are some gaps in the research. The sum of the proceeding is that I really really want to avoid taking them if possible. Pretty simple. Do you agree?

"I am troubled by the conflation of the terms "diet" with SCD."
In this thread I meant to be clear. I am advocating SCD. I am asking, if not SCD, do you have an alternative. Do you have any research to support your position? Are you doing it? How is it working?

"That's like me saying I "take meds," when I really mean I take my meds sometimes, but not in the prescribed doses. "
This diet requires fanatical compliance. In my case I have been fanatically compliant. This means every meal, every day, every bite, I 100% comply with the diet, year after year. If you are not doing that, you are not doing SCD, you are doing something else and what ever your results, good or bad, they should not be attributed to SCD. In my case in addition to being fanatically compliant, I also incorporate some additional refinement. I have other issues than just Crohn's. This is a documented part of SCD. In addition to not eating some stuff, introduce foods slowly, do not eat what gives a bad reaction. Your point is just not correct. If you want to say something about SCD, you should read the book, so you do not say things that are just not correct.

Now, getting back to the purpose of this thread which is to share what works. It seems to me, that SCD does not make sense to you. May I please ask you the following

Do you believe that any diet can substantially help to heal Crohn's? (Meaning heal ulcers, close fistulas, regain energy,..) (maybe you have already found what works for you? and you feel confident enough in it to recommend to others? not trying to put words in your mouth but your sig has some diet detail in it)

If you believe Diet can heal, which one? Do you have research for your position?

Do you believe that one of the characteristics of Crohn's folks is Dysbiosis?

Do you believe that when in Dysbiosis we experience all the bad symptoms of Crohn's, so our objective should be to get the gut flora in balance?

If no to the above, what should we focus on to achieve healing (t cells, antigens, ...) and how?
Or is there nothing to be done but take the drugs, cross your fingers and hope you are one of the lucky ones who does not need surgery and bad drugs?


Cheers
Dave
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FamilyGuy
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Posted 1/16/2015 9:40 AM (GMT -8)
I'm deleting all comments not specifically related to the topic and not done in a civil manner. If the mods have to do excessive editing, the thread will be locked.
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IamCurious
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Posted 1/16/2015 11:56 AM (GMT -8)
1) Do you believe any diet, no matter what or how you get there will result in substantial healing? (heal ulcers, close fistulas,...)
2) Have you achieved substantial healing with the above approach?


Whether using diet or meds, everyone knows that there is no absolute cure for this disease. Only managing symptoms.

I have taken meds only once during my 7 years with this disease. It was during my last flare when my perianal abscess was cured by taking a 3 week course of antibiotics, not thru diet.


3) Do you have any research that supports your position? My guess is no because "I actually don't pay attention to what the official studies say anymore than I pay attention to what the official diets proclaim. I listen to my gut, and my gut only."

Actually yes. Supplementing with probiotics and powdered psyllium seed (plantago) is the key to my remission. Numerous studies published in PubMed have indicated that certain probiotics, such as mentioned in yesterday's original thread, are just as effective as mesalamines for maintaining remission. The same is true with powdered psyllium seed which gut bacteria convert to butyrate that nourishes cells in the colon.

Diet modification that avoids my personal food triggers is my mainstay. Probiotics are my maintenance med and extra supplements are taken as needed. So far this has nipped symptoms in the bud for almost 5 years since my last flare.


I would summarize your position as 1) SCD does not make a lot of sense for a bunch of reasons

You got it, I think the SCD is hopelessly out of date. Not just because it labels saccharin as LEGAL when in fact the latest research indicates that it causes the microbiome to become toxic. Or because it labels resistant starches as ILLEGAL when in fact the latest research indicates resistant starch encourages the growth of healthy bacteria in the colon.

If the SCD says that potatoes are bad to eat but I have no problem eating them, or the SCD says kale is legal but kale sends me directly to flarestown, then why should I care what the SCD says. The SCD doesn't have a clue. You can say that everyone is different and some foods that are considered legal should be avoided.

OK, but how can you explain that I have been in remission for almost 5 years while consuming what the SCD considers toxic foods like potatoes, corn, rice, and starchy vegetables almost every day? Forget the SCD and maintain a personal food diary.
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DaveF
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Posted 1/16/2015 1:17 PM (GMT -8)
hi Iamcuroius

"I have taken meds only once during my 7 years with this disease. It was during my last flare when my perianal abscess was cured by taking a 3 week course of antibiotics, not thru diet."

I have taken more meds than you. That small amount of meds is very cool. I wish I could say the same as you. It seems you really have it figured out for you. Congrats!!

My first question was about healing not curing. I agree with you there is no cure, just healing and symptom control. I think from your answer that your position is that healing/reemission can take place if you have a diet / take that includes the right probiotics and "psyllium seed which gut bacteria convert to butyrate that nourishes cells in the colon." and "Diet modification that avoids (my) personal food triggers"."

Your program has amazing results, congratulations. I still take some drugs, so I would say you program is more successful than mine

A couple of questions please
1) I looked at the last thread and did not see any research referenced, re the probiotics(sorry if I missed it). Could you please post?

2) If someone was looking to follow your path, what would you tell them? Would it all be an experiment? or take the same probiotics? Would you tell them to take the same amount of psyllium? or experiment to find the amount?

I think a combination of some additional details re your program and the research, given your results, would give an alternative to drugs for consideration that would be valuable to everyone here.

Regarding SCD. All I have is research showing Crohn's folks have a screwed up gut biome, research SCD changes the gut biome of folks with Crohn's to normal, research it works to reduce symptoms/reduce the need for medication/puts folks into remission, the fact that leading organization are incorporating it into their treatment program, anecdotal stories from thousands and my personal experience. I am happy to repost these links (they are all in the original thread). I am not a scientist, regarding this subject, so even if I try to defend a specific point, it would only be a best guess on my part.

Given I am not a scientist, I am trying to get us to document what works for you, and why we believe it could work for others. All positive. Not being critical of you or anyone else.

I am asking for the research because although as individuals, we are guided by our individual experience, it is of limited value to extrapolate to others. In plainer words, "it works for me" is of less weight as I look for options than "it worked for 75% of 200", which has less weight than "it works for 100% or 10,000". Like it has been working for folks around the world for 50 years has more weight than "it works for me". As we know nothing works for everyone, that is why the research reference question, to include the larger group.

Hope this is coming across as 100% respectful, as that is the intention

Thanks again for your response

Dave
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NiceCupOfTea
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Posted 1/16/2015 1:33 PM (GMT -8)
the fact that leading organization are incorporating it into their treatment program

There was no evidence of this from the links on the blog page that you posted - yes, I checked out every single link.

anecdotal stories from thousands and my personal experience.

How come only about 2 of those "thousands" have made it over to Healing Well then? Likewise crohnsforum.com?
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kazbern
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Posted 1/16/2015 3:20 PM (GMT -8)

dfdavedf said...
GM Kazbern
Do you believe that any diet can substantially help to heal Crohn's? (Meaning heal ulcers, close fistulas, regain energy,..) (maybe you have already found what works for you? and you feel confident enough in it to recommend to others? not trying to put words in your mouth but your sig has some diet detail in it)

No, I do not believe that SCD or any diet alone can heal ulcers or close fistulas or resolve inflammation that is causing fatigue etc. Edited to add that TPN can induce remission, so there's once kind of diet that works.

dfdavedf said...

Do you believe that one of the characteristics of Crohn's folks is Dysbiosis?

Do you believe that when in Dysbiosis we experience all the bad symptoms of Crohn's, so our objective should be to get the gut flora in balance?

Honestly, I do not know what Dysbiosis is. From the context of your question I'm guessing it is the term used to describe an abnormal set of gut flora?

From the research on gut flora that I have read, it is clear that Crohn's patients and UC patients have a gut flora population that is different from the average person, and in fact different from each other (Crohn's and UC differ in the gut flora make-up). I do agree that this is a characteristic of having Crohn's or UC. I do not know if this condition causes the symptoms or is a result of the disease. I tend to agree that a goal of any therapy should be to get the baddies out and the good bacteria in.

dfdavedf said...

Or is there nothing to be done but take the drugs, cross your fingers and hope you are one of the lucky ones who does not need surgery and bad drugs?

As you know, I have followed a GF diet for almost 4 years now. I do not know what my inflammatory status was before I adopted this diet, but I do know that a few months into the dietary change I had a scope that was completely clean. My GI recommended the GF diet because I consistently refused to change my medication protocol from 5-ASAs to immune suppressors. Plus he didn't think I needed stronger meds, but he was trying to help me resolve quality of life issues (urgency mostly).

So I don't think your last question is really answered with a yes or a no.
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beave
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Posted 1/16/2015 3:28 PM (GMT -8)

kazbern said...


Honestly, I do not know what Dysbiosis is. From the context of your question I'm guessing it is the term used to describe an abnormal set of gut flora?

From the research on gut flora that I have read, it is clear that Crohn's patients and UC patients have a gut flora population that is different from the average person, and in fact different from each other (Crohn's and UC differ in the gut flora make-up). I do agree that this is a characteristic of having Crohn's or UC. I do not know if this condition causes the symptoms or is a result of the disease. I tend to agree that a goal of any therapy should be to get the baddies out and the good bacteria in.

Bolded for emphasis, because it's a critical point. Is dysbiosis the cause of the problem or a result of the improperly functioning immune system? The answer is TBD.
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IamCurious
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Posted 1/17/2015 7:21 AM (GMT -8)

dfdavedf said...
If someone was looking to follow your path, what would you tell them?


I have ulcerative colitis which can be treated effectively with mesalamines. I recommend everyone to take their meds. Mesalamines are anti-inflammatory and are proven to help prevent cancer.

But I am allergic to mesalamines. I was contemplating how to end my flare when the antibiotics for my perianal abscess jump-started me into remission. I took generous amounts of probiotics while on the ABX to maintain my gut flora.

I had no idea my remission would last this long. Since 5-ASAs are not an option there may come a time when I am forced to choose between Big Gun meds or surgery. In the meantime I will do anything to remain in remission.

I am certain that some probiotics help me because they quickly snuff out symptoms after I eat something bad, (as long as I stop eating it!). But some probiotics that help me seem to not affect others or may even make them worse.

I never heard of powdered psyllium seed before reading about it on the UC forum. Supposedly it is more effective than psyllium husk. Several of us found it very beneficial so it became famous on the UC forum, but because everyone is different many others said it did nothing or even made them worse. So I never recommend it for everyone, only to say that it worked for me and perhaps it might help another if they wish to try it.

Here is a study indicating that plantago (psyllium seed) helps with UC:
www.ncbi.nlm.nih.gov/pubmed/10022641
CONCLUSIONS: Plantago ovata seeds (dietary fiber) might be as effective as mesalamine to maintain remission in ulcerative colitis.

Here is the link I posted for beave on the original thread indicating that probiotics can help with Crohn's
www.crohns.net/miva/education/articles/Probiotics_in_the_Treatment_of_Crohns_Disease.shtml
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Canada Mark
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Posted 1/17/2015 1:59 PM (GMT -8)
Dave, I have a super long post to try and answer some of your questions. Sorry for the length but I really didn't know quite how to address them. Hopefully you (or others) will find it somewhat useful.

I'll just spell check it and post it - again sorry for the length as it took me the better part of the afternoon to write.

It may not even fit in one post! Crazy.
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Canada Mark
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Posted 1/17/2015 2:04 PM (GMT -8)
Dave - you asked this this:

CanadaMark

I took away from your posts - "It's simply the reduction in dietary antigens" or in layman speak irritants. If we reduce the irritants we will heal. You did not say it but if that is the case it must NOT be about dysbiosis.

1) What research have you seen that supports your position of it is all about dietary antigens?

2) SCD is about getting the gut bacteria back in balance, is SCD a good diet?

3) If we remove antigens will it result in measurable healing?

4) What is the best diet to effect the greatest healing? Can you provide research?



Dave,

First, I agree with others that state SCD is outdated. I also agree with what Ambling states that diet alterations can be effective as part of a broad “strategy” or range in treatment option - or perhaps “symptom management” would be a good term.

Second, as others have pointed out, it’s completely irresponsible and untrue to state that research (and subsequent testing) of medications provided by GI’s in incomplete. It’s also completely and highly irresponsible to tell others not to take meds.

Though many of us (myself included) would LOVE to be able to ditch the meds - sadly it seems it’s not always possible.

The simple fact is this; Even yourself, should flare severely at some point and should you find yourself in the situation where you cannot get out of the flare via diet (SCD or whatever) you will literally RUN to your GI and beg for medication to help find relief - or you will give into surgery. There’s no getting around this. Happens to many.

Some (the very lucky ones), however, do manage to avoid this situation solely by dietary adjustment alone. There are many people that manage their symptoms either by diet alone or combination of diet and meds. But the vast majority used meds first to get into remission or at least pointed in that direction, then used dietary adjustments in combination with meds to help maintain remission and some are able to taper off meds altogether and use the diet alone to remain in remission. Others, again, are not so lucky.

SCD is outdated, after all it was written ages ago. Does this mean that it’s concepts are completely “invalid”? certainly not. Does this mean that individuals with IBD will not stand to benefit? Certainly not.

What many have learned (over time and personal trial ) and have tried to point out to you on here is that results are very individual. And as NCOT and others point out is it a great way to live? (such dietary restriction) - well that again is solely up to the individual and personal belief to determine.

In a nutshell - SCD does not equal remission/resolution of symptoms for ALL people. Unfortunately, neither does any diet for that matter.

——————————————

In regards to antigens - No, that’s not what I am saying.

First, and quickly, Dysbiosis: The term "dysbiosis" is not a standardized medical term. Apparently similar concepts are also described as "microbial imbalance", "bacterial imbalance", or "increased levels of harmful bacteria and reduced levels of the beneficial bacteria” - This I cut and pasted directly form Wiki as it provides a great answer to any that are confused by the term.

In people with IBD there are structural changes (tissue, cellular morphology etc), physiological changes (mucin secretion/inflammatory cytokines etc) and bacterial (altered flora) changes present in all of us with IBD that differ from normal healthy people. As for the why - again, the truth is simply no one knows. No getting around that one for the time being.

Alterations/changes in one seemingly (though not always) leads to alterations and changes in others. Example: Altered bacterial flora can lead to altered physiological changes (change in mucins/secretions/inflammatory cytokines etc) and this can lead to a change in structure (cellular morphology i.e. altered appearance). Conversely, structural changes (cellular damage/morphology ) can lead to altered physiological changes (altered mucin secretion/cytokines) and this can lead to changes/shift in bacterial flora (dysbiosis). And so on, and so on, and so on. It’s seems to be much like pressure, temperature, volume relations - a change in one induces change in the others.

What’s very unknown (as many things are) is inflammation or chronic inflammation - so a physiological change like inflammation (inflammatory cytokines) in IBD for example: we go through periods of barrier injury “mucosal damage” or “structural damage” followed by periods of repair to restore the damaged parts and their normal functioning - but this does not always seem to happen correctly. The detailed effects inflammation (or inflammatory cytokines) have on our barrier (epithelium) and how they in turn influence normal epithelial regeneration and function is somewhat unknown - at least in the very detailed sense. But none the less, inflammation and chronic inflammation seems to cause damage that we are not always able to repair properly.

Addressing inflammation (think Remicade etc) at it’s best, blocks inflammation and this in turn (again at it’s best) allows our barrier to heal properly. But sadly this is often not lasting and much like diet, results vary both individually and pharmaceutically (Remicade, Humira etc) .

In normal, healthy people their barriers are working just fine. Dietary and bacterial antigens are kept at bay/tolerated/dealt with by the proper physical structure of our intestinal tract, the proper physiological responses, and a seemingly complimentary microflora.

Those of us with IBD have altered barrier function.

Something (or multiple things) have gone all “wonky”.

Food antigens - Even in normal healthy people with a perfect working physical barrier and mucus and all that good stuff, a percentage of food or dietary sourced antigen ultimately passes through. I believe it is somewhere around <5% but am not 100% sure. In any case, even in normal healthy folks, these dietary antigens pass through in a form that can induce an active immune response. Because of this, small amounts of food specific IgG, IgA etc are measurable in normal healthy people at any given time. These are called immunoglobulins and are antibodies, so super tiny specific proteins that attach to “bad” or non-self things like food and bacteria etc. Think of them as like little tiny identification flags that say hey “I’m a bad guy” - or more correctly “I COULD be a bad guy” and these flags notify the immune system that it needs to deal with them either through a reaction to rid the body of them, or tolerate them without any response.

In those of us with IBD, researchers can measure and compare IgG, IgA etc responses with healthy people and what they find is that levels of these are increased in those of us with IBD. The increase seems to correspond to how bad or severe or disease or flare is. Many researches suggest that this stems from increased barrier permeability - our damaged intestines allow larger amounts of food antigens to pass through into our systems in an immunologically active form.

Generally, its thought that our bodies deal with these antigens via a TH2 response (adaptive immune response) but not much is known in this territory yet and ultimately when our immune systems are functioning properly we become tolerant through a series of immune system processes. At least in normal healthy people. But, as is the case, we are unlucky and have IBD - so even these processes (or what’s known about them) seem to have gone “wonky” for some unknown reason.

Much like everything else, there’s a whack of unknowns in this department. But it is clear, that if tolerance is lost or not properly developed that in some cases there can be a strong TH2 (adaptive immune) response that is thought to go somewhat like this in very broad and 1,000 foot above view: - TH2 (Helper T cell Response)> Stimulatory Cytokine Release > B Cell Activation > Stimulatory Cytokine Release > Mast Cell Degranulation > Stimulatory Cytokine Release > Smooth Muscle Contraction/Mucus Release etc etc. Now this is more of a standard pure “Allergic Reaction” response chain however. Take IgG for example, so specific food antigens kicking around with IgG “flags” sticking to them - instead of ultimately ending up with Mast Cell activation, IgG generally results in recruitment of neutrophils and white blood cells and such. We all have our levels of white blood cells and such monitored/checked by our GI’s. This is because these cells are sort of like the garbage and clean up crew. They deal with the mess caused by the inflammatory & immune response to certain antigens and our GI’s monitor the amounts present as it’s indicative of how bad our inflammation is.

This whole process is very complex in the super fine details. More so very little is even understood as there are crossovers between the various factions and what cell types are activated and well… it’s complex. At the same time it’s very amazing. And very much still unknown. But again, intestinal response from food-sensitive components seem to induce a strong TH2 (adaptive) immune response and this results in inflammation (which can be varying). More so, in animal models these responses usually results in weight loss, loose stool, structural changes in the intestinal walls (villi erosion) and very severe inflammation.

Sound familiar??


Many studies show that Elemental Formulas can be quite successful in inducing remission in Crohn’s disease. Even in adults if I’m not mistaken.

What is an elemental formula?

These are formulated (classified) from least to most allergenic:

The least allergenic ones are comprised solely of individual amino acids as their protein source, glucose (derived from corn syrup) as their carbohydrate source and fat content is from oils. With added vitamins and minerals. So this is the Hypoallergenic version.

The most allergenic ones contain whole proteins, complex carbs and fats with added vitamins and minerals.

When it comes to allergenic classification though this is always based on the proteins (whole versus specific individual amino acids).

SCD, the intro diet portion is very, very close to the least allergenic of elemental formulas or maybe mid point. The difference being the chicken soup and such in the intro diet provides whole protein sources vs specific amino acids in elemental formulas. The “well” cooking and puree’ing of the carrots breaks down the fiber and provides a source of simple carbs - again in the form of glucose. Fats come from the chicken fat and well… you can see the similarities. Vitamins from the carrots again and minerals are released from the bones during cooking.

So you see, SCD at it’s roots is similar to elemental formulas for, well, pretty much the same reasons.

The fact is though, that no one wants to stay on either for a long time. They both suck as far as taste and you’re eternally hungry and well, it’s just not fun.

In any case the more hypo-allergenic a formula is, the least likely it is to produce not only a true allergic reaction (think protein allergy) but also a tolerance or IgG mediated type reaction (think wheat, grain, nuts etc).

As Ambling also pointed out to you, studies also show Liquid Polymeric diets can be equally (or very close) to elemental diets in achieving remission. I’ve read things like 60+% remission rates which is pretty darn good! Liquid Polymeric formulas contain complex carbs and ‘illegals' - so as he stated, what the heck? These are “illegals” according to the diet.

So this is where SCD sort of begins to fall apart.

The complex carbs source in Liquid Polymeric Formulas are generally Maltodextrin or something similar. Though these are technically “complex carbs” they are essentially just multiple glucose molecule chains which will very by source and manufacturing process and are not that long (in chain length) even when compared to say Corn Syrup derived carb sources in Elemental Formulas which are simply singe glucose molecules. The complex carbs in Liquid Polymeric Formula is obviously nowhere near as complex and complete as say wheat flour or bread crumbs or anything of that nature. These are huge, very complex and some parts are non-soluble.

For an immune reaction to take place against an antigen is basically goes like this:

The more complex the molecule (molecular complexity), the heavier the molecule (molecular weight), the least soluble the molecule is the most likely it is to be an “immunogen”. An immunogen is an antigen that produces an immune response.

Think “Gluten” which is a wheat protein. Wheat gluten is a very complex molecule, very heavy, and is non-soluble - in fact Alcohol is require to break it down basically versus the other other starches in breads where water causes them to break down. Put bread in water and mix it up, what is left or the lump of stuff left over at the bottom of the glass is “Gluten”… Put this in alcohol and and stir it up and see what then happens. So gluten is a very good immunogen because of its molecular properties.

Liquid Polymeric Formulas are essentially “partially pre-digested” nutrient sources made of low molecular weight, non-complex, soluble, minimally-immunogenic molecules.

With SCD, more so the intro and initial introductory staged portions, long cooking times and puree’ing is used in place of manufacturing processes to physically break down foods into “partially pre-digested forms” making it easier for our damaged barriers and altered physiological processes to access and absorb nutrients in forms that are less likely to cause either an allergic and or tolerance issue. Think smaller molecules like glucose and such.

As others have pointed out, many who follow or “tweak” SCD realize at some point that they can handle potatoes, some starches like white rice (though a bit of a wildcard on this one especially with brown and whole grain rice) to varying degrees. And there seems to be a lot of benefit for those that can handle them. Mainly the fullness factor! A satisfying meal one could say.

As Ambling pointed out, many report resistant starch leads to an improvement of symptoms as it is used by many on here (Maybe more so the UC board) as an eventual source of Butyrate - which is the preferred energy source of colon cells as studies have shown. In colon cells it seems butyrate is preferred first as an energy source, followed by glutamine and then glucose.

The main source of Butyrate is bacterial fermentation of starches and fiber. Bacteria such as Clostridium, which again are consistently shown to be low in people with IBD and IBS for that matter metabolize these starches and fibers and produce primarily Butyrate, Acetate and Proprionate as and end result or “product” of their metabolism. It appears as though Butyrate is used by our colon cells, Acetate by our other tissues and Proprionate is taken up by our livers.

Why is Butyrate low in those of us with IBD and IBS? Well, one reason is simply the reduction in fermenting bacteria. Why do we have less fermenting bacteria such as Clostridium? No one really knows. It could be a result of inflammation damaging them, it could be our immune systems attacking them (as innocent bystanders during infection) it could be antibiotic use hit them hard or it could be simply that the massive diarrhoea that we all endure in times of flare causes resistant stach and fiber source to shoot right through us! - quick transit time of these fiber and starches can make for a short supply of food for these bacteria, ultimately reducing their population. They are all ideas and hypothesis that are currently under investigation.

Here is an interesting paper on Clostridium you could read:
Commensal Clostridia: leading players in the maintenance of gut homeostasis www.gutpathogens.com/content/pdf/1757-4749-5-23.pdf


Here is a paper on the effect of diet on dysbiosis: *** there’s a nice little chart a short ways down.

Diet-Induced Dysbiosis of the Intestinal Microbiota and the Effects on Immunity and Disease: www.ncbi.nlm.nih.gov/pmc/articles/PMC3448089/


The Human Genome project actually list some studies on diet induces changes in the microbiome as well.


Much of this latter part (Resistant Starches) was unknown back in the dawn of SCD… Same with the ability to sample mucosal bacteria and it is very fast progressing research. Much research today shows that some of the thinking behind SCD is outdated and has not been revised to account for new findings.

Does that mean one should not bother trying SCD? Heck no - go for it, if it work’s then all the power to you. If it doesn’t or you cannot handle all the cooking, well then “tweak it a bit” and see if that makes a difference.

When it comes to food tolerance issues and wanting to know how much “diet” or “food issues” effect/contribute to your disease status - Perhaps do this - simply FIRST get yourself in remission by any means possible (most likely meds), or meds combined with easily digestible foods (SCD intro/Elemental Formula/Polymeric Formula)
so get on top of the inflammation and get back to solid or semi-solid bowel movements if at all possible. Then if you can at least, by some miracle get to this point, start introducing foods in at a time just like SCD suggests and see what effect they have. If you get massive “D”, cramping and so on, well stop them. See if you go back to normal upon removal and then try it again and see if the same reaction occurs. And sort of mess around until you find a basic “safe” diet that you can always revert to. Once you can achieve a “safe diet” it becomes easier and easier to flush out what does not work of you. Same with getting to solid stool again.

Many, many people on here have done elimination diets with success. But again they are hard to do!

As everyone keeps pointing out diet and “food tolerance” are very individual.

But at the end of the day, paying attention to and adjusting your diet can yield remarkable benefits, but sometimes you have to get lucky in this regard. It’s tricky territory.

And again, as Dr. Chiodini said in an email:

“Conventional therapy in Crohn's disease (except for a few lucky ones) is supportive at best and effective in lasting remission (>1 year) in only about 30% of patients. That includes all the new biologics at $7-10,000 a treatment. With those odds and success rates, why not try unconventional treatments – they cannot be much worse.”

In my personal view, if diet is truly considered an “alternative therapy” or “unconventional therapy” then you really have nothing to loose and perhaps all to gain. Just take some time to learn more than what’s written in SCD as well as whats new and more updated. SCD could honestly could use some updating.
 
——————-

Here is some other papers that relate to the above that you may or may not find of interest - But most comes from text books and other school resources:

Food antigen-induced immune responses in Crohn’s disease patients and experimental colitis mice:
www.ncbi.nlm.nih.gov/pubmed/25099432

Commensal Clostridia: leading players in the maintenance of gut homeostasis www.gutpathogens.com/content/pdf/1757-4749-5-23.pdf

Diet-Induced Dysbiosis of the Intestinal Microbiota and the Effects on Immunity and Disease: www.ncbi.nlm.nih.gov/pmc/articles/PMC3448089/

Post Edited (Canada Mark) : 1/17/2015 3:18:13 PM (GMT-7)

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ambling
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Posted 1/17/2015 3:40 PM (GMT -8)
As you can see Dave even CM, who is studying some of this at College, battles with the very basics of the science involved. There is no point in my delving further into the complexities (such as the importance of the genetic loci).

It is all incredibly individual, and that is the bottom line.

However, people have instincts which usually forgo the need for any deep scientific understanding!
You see people here who simply know that eating certain pure organic food is the right thing for them. And others who are equally aware that highly processed, easily digested foods are what is the appropriate thing for them. No two cases are exactly the same because of the complexities.
The same is true of the importance of medications, and the wide range of complementary approaches.
In the case of nutrition, the trial of various foods, and diet types, is the only real way to find out what works for each individual – and for each level of damage to the digestive system.

I will say that in all my years I have never seen anything good associated with the word 'fanatical'! There is always room for adjustment, growth and flexibility, when it comes to individual care.

When the cause of IBD is identified, which I believe not all that far off, I have no doubt that people will be surprised, and relieved, that it was in no way their fault nor could they possibly have done any better with the various treatments they utilized.
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gumby44
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Posted 1/17/2015 5:37 PM (GMT -8)
Thanks to all of you who are putting thoughtful, hard work into these posts. I admit that I probably don't understand half of it, but it is interesting to read your perspectives.
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DaveF
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Posted 1/20/2015 12:30 PM (GMT -8)
I have been traveling so just catching up. Thank you for your insightful responses. A few people have again said I advocate not taking meds. I will repeat. I would never suggest to not take your meds. I take meds everyday. My personal goal as stated in prior messages is to delay/avoid the big scary drugs. So let's close this point. In not way did I once indicate that someone should not take your meds. Do as you and your doc decide including taking your meds. Thank you

Beave
"Is dysbiosis the cause of the problem or a result of the improperly functioning immune system? The answer is TBD"

I agree this is TBD, however what we do know is when there is difference it is correlated to symptoms and the need for med. So our goal should be to get the gut bacteria to mirror normal guts, so we can reduce / eliminate symptoms and the need for strong drugs. If we were trying to find a cure the answer matters but given we are talking about symptom control, although interesting, I am not sure it matters. Is this thinking off track"

kazbern

I am not trying to put words in your mouth, but it seems GF worked for you, and got you good results. Do you think it is worth the effort for others to give it a try?


Iamcurious

You mention take your meds and as stated this goes without saying. You mention and reference some research regarding probiotics and powdered psyllium seed. It seems if someone asked, hey what do you recommend that will help to avoid big drugs and surgery you would go with the two recommendations mentioned, agree?
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DaveF
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Posted 1/20/2015 1:11 PM (GMT -8)
Canada Mark
Thank you for putting so much effort in. It is really cool that you did so. I have read your response a 3 or 4 of times will do so again.

I will very specifically address the points I can and those I think a response add some value.


SCD is out of date. - This is your opinion and is valid for you. This is not my opinion, nor the opinion of Seattle Children's, J. Seattle Children’s
http://www.seattlechildrens.org/clinics-programs/gastroenterology-hepatology/treatments-and-services/IBD-center/

in addition to mentioning on their site, they are conducting research and have both docs and nutritionists to provide support.
It is not the opinion of Stanford University and Hospital, who are currently conducting research and have docs on staff recommending it.

It is not the opinion of GI Care for Kids (Atlanta)
http://www.gicareforkids.com/conditions-we-treat/inflammatory-bowel-disease/index.php
who support it.
Nor is it the opinion of the following docs
http://www.scdiet.org/8resources/doctors.html

It may be out of date but a lot of docs around this country do not think so. In addition, if not SCD then what?

"Second, as others have pointed out, it’s completely irresponsible and untrue to state that research (and subsequent testing) of medications provided by GI’s in incomplete."

It may not be nice to say but it is unfortunately very true. I use as proof the American College of Gastroenterology - Management of Crohn’s Disease in Adults,

http://gi.org/guideline/management-of-crohn%E2%80%99s-disease-in-adults/

where it says things like

"Although different formulations of mesalamine have been shown to benefit patients in the acute treatment of mild to moderate CD (96–98) at doses of 3.2–4.0 g daily, several of the studies are of poor methodological quality (96, 97) and a meta­analysis of three large trials with mesalamine, 4 g daily, demonstrated a statistically significant (P = 0.04), but a non-clinically relevant difference (CDAI benefit of 18 points) compared with placebo (99). "

"Comparisons between mesalamine formulations have not been sufficient to discriminate between agents for ileal, ileocolonic, or colonic disease. "

"Rectal applications of mesalamine or corticosteroids have never been evaluated in controlled trials in patients with distal colonic CD."

"The small sample size of this trial and the relatively small therapeutic effect of sulfasalazine (<=15%) make interpretation of this trial difficult. Two small placebo-controlled trials with metronidazole 1 g daily and metronidazole 800 mg daily in combination with cotrimoxazole did not demonstrate efficacy in the treatment of active CD (102,103). There are no long-term efficacy data regarding metronidazole. The well-documented risk of peripheral neuropathy necessitates monitoring for symptoms or signs of paresthesias"

I could go on. You may say it is wrong to say there are big gaps in research but I think the American College of Gastroenterology disagrees with you. And for me this explains why it all feels like a bit of a crap shoot when you go to the GI.

Also as stated this was written by docs who got at least some of their funding by big pharma

"Stephen B. Hanauer has declared he has served as: consultant for Abbott Labs, Alevan, Amgen, Asahi, Astra Zeneca, Bristol Myers Squibb, Centocor, Chemocentryx, Elan, Ferring, Genentech, Glaxo Smith Kline, McNeil PPC, Millenium Pharmaceuticals, Novartis, Proctor & Gamble, Prometheus, Salix, Shire, Therakos, and UCB Pharma; clinical researcher for Abbott Labs, Asahi, Bristol Myers Squibb, Centocor, Chemocentryx, Elan, Ferring, Genentech, Novartis, Proctor & Gamble, Prometheus, Salix, Shire, and Therakos; and speaker for Centocor, Ferring, Proctor & Gamble, Prometheus, and Salix. Gary R. Lichtenstein has declared he has served as a consultant for Abbott Corporation Bristol-Myers Squibb, Astra-Zenecca, Centocor, Elan, Proctor & Gamble, Prometheus Laboratories, Salix Pharmaceuticals, Schering-Plough Corporation, Shire Pharmaceuticals, and UCB Corporation; conducted research for Abbott Corporation Bristol-Myers Squibb, Centocor, Proctor & Gamble, Prometheus Laboratories, Salix Pharmaceuticals, Shire Pharmaceuticals, and UCB Corporation; and received honoraria for lecturing from Abbott, Centocor, Elan, Proctor & Gamble, Prometheus Laboratories, Salix Pharmaceuticals, Schering-Plough Corporation, Shire Pharmaceuticals, UCB Corporation. William Sandborn has served as a consultant for Abbott Laboratories, Astra Zeneca, LP, Centocor, Elan Pharmaceuticals, Inc., Ferring Pharmaceuticals A/S, Procter & Gamble, Prometheus Laboratories, Salix Pharmaceuticals, Inc., Schering Plough Corporation, Shire Pharmaceuticals, Tillotts Pharma AG, and UCB Pharma; and received research honoraria from Abbott Laboratories, Astra Zeneca, LP, Centocor, Elan Pharmaceuticals, Procter & Gamble, Salix Pharmaceuticals, Schering Plough Corporation, Shire Pharmaceuticals, Tillotts Pharma AG, and UCB Pharma."

You may be comfortable with the above, but I am not. For me, it explains a lot of what is happening.


I will not address taking meds again. This misunderstanding should be closed. I take meds you should take yours

"But the vast majority used meds first to get into remission or at least pointed in that direction, then used dietary adjustments in combination with meds to help maintain remission and some are able to taper off meds altogether and use the diet alone to remain in remission. "
I take meds and do diet. I am not sure if I would stay in remission without the meds, but I would count myself as very fortunate if this was all the meds I ever had to take.


"And as NCOT and others point out is it a great way to live? (such dietary restriction) - well that again is solely up to the individual and personal belief to determine."
Eating healthy for me is a great way to live. My kids eat my food and now are incorporating much of the learning in their own meals in college and in their homes. They do not do SCD, but it is so darn tasty and healthy, they say why not eat like dad. The restriction for me was being sick everyday, and compared to that, this diet is nothing.

"SCD does not equal remission/resolution of symptoms for ALL people. Unfortunately, neither does any diet for that matter. "
Agree, that is why I have tried to call out as specific as possible, what is working for the folks who are participating in this discussion. I put forth SCD with the evidence I have. If we all do that it helps us all as nothing works for everyone (as you said).

"In regards to antigens - No, that’s not what I am saying. "
Sorry for misunderstanding. It was an honest mistake.

Thank you for the input re how the gut works. It is very interesting.

"So you see, SCD at it’s roots is similar to elemental formulas for, well, pretty much the same reasons. "
100% agree. All folks who are doing SCD, assuming they read Breaking the Vicious Cycle (BTVC), know this as it pointed out in BTVC. The basics of SCD and elemental are very similar. It is the belief of folks doing SCD that you cannot do elemental for years and years but you can do SCD

"The fact is though, that no one wants to stay on either for a long time. They both suck as far as taste and you’re eternally hungry and well, it’s just not fun. "
This is just not true for SCD. I am never hungry and the food tastes great. Would I love to be in great shape and never exercise, sure. Same as SCD. Would I love to have all the benefits and eat anything, sure, but like exercise, health takes work. I have been doing this for 5 years and have no intention to stop. same as exercise.

I am honestly trying to come to a recommendation from each of us. Please correct me if I am wrong but I think if someone would say to you, I am trying to avoid drugs and surgery (although I will take them as prescribed by my doc), what would you recommend, I think you might say "If diet is truly considered an “alternative therapy” or “unconventional therapy” then you really have nothing to loose and perhaps all to gain".

Mark, you spent some time educating but I am not sure what the specific recommendation is. I know it is not SCD as written. Is it start with SCD but change it in this way... Or is it start with SCD and do some research and fix it....Or is it do a different diet?

Given your level of insight could you close the above

And again thank you. We agree on much and disagree on some things. When approached properly it results in learning and the presentation of understanding to be examined by all. That is good for all (including me)
Cheers
Dave

Post Edited (dfdavedf) : 1/20/2015 2:24:51 PM (GMT-7)

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DaveF
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Posted 1/20/2015 1:18 PM (GMT -8)
Hi Ambling

I think if someone was to say to you, What do you recommend to avoid drugs and surgery you might say "In the case of nutrition, the trial of various foods, and diet types, is the only real way to find out what works for each individual – and for each level of damage to the digestive system." or in other words "Give diet a try, (perhaps use either an elimination diet or food journal) and you can find what works for you"
Sorry if that is not what you said, and yes I added the bit about elimination and journal, but only cause I thought it went with your position. If you would please correct me if I got it wrong it would be appreciated.

Again thank you
David
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kazbern
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Posted 1/20/2015 1:37 PM (GMT -8)
Dave, I always tell people that they should consider trying a GF diet. I also always tell people that lactose intolerance is quite common (it is, in fact, the normal state for a human adult to be lactose intolerant to some degree unless you are of northern european heritage) and that eliminating lactose should be the very first thing anyone tries in terms of dietary changes.
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DaveF
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Posted 1/20/2015 2:56 PM (GMT -8)
Thank you for your insight. This is a diet recommendation that works for you, and I understand many even most, although I do not have a specific GF research paper in front of me.Also I love that "Scope in 8/11 found no evidence of inflammation! and you are doing this with low risk drugs. Love it


So in the pop up poll

SCD (as written) - 2
GF - 1
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NiceCupOfTea
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Posts : 11145
Posted 1/20/2015 3:33 PM (GMT -8)

dfdavedf said...
In addition, if not SCD then what?

A million other diets (a diet is as unique as the person makes it, as other posters before me have explained in greater detail elsewhere); medication, surgery, faecal transplants, etc. From the seattlechildren.org site:

Clinical studies show that certain nutritional therapies (formulas or diets) may reduce IBD inflammation and promote healing of the lining of the bowel (the intestinal mucosa). We offer exclusive enteral nutrition (EEN) and support the Specific Carbohydrate Diet (SCD). We can help you and your child decide whether nutritional therapy is right for them and how to do it.

Seattle Children's offers advanced treatments, such as the medicine natalizumab and fecal microbiota transplant therapy (also known as stool transplant or feces transplant). These are not offered everywhere for children with IBD.

The surgery that some children need for IBD is highly technical. Our surgeons do more of these operations for children than any other surgeons in the region, including Oregon, Washington, Alaska, Montana and Idaho. Greater experience leads to better results.


They merely say they "support" the SCD diet, amongst a wide variety of other therapeutic approaches, including multiple nutritional approaches. And "support" is vague in this context: I do not know what they mean by it.

Post Edited (NiceCupOfTea) : 1/20/2015 4:36:24 PM (GMT-7)

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Canada Mark
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Posted 1/20/2015 4:04 PM (GMT -8)
Hi Dave,

First those are Paediatric Crohn's studies and sites. Inflammatory Bowel Disease impacts a child ability to simply "grow". Food intolerance issues are also known to be very high in Children with Crohn's, hence the importance of ensuring adequate nutritional absorption for both general growth and avoidance of adverse food reactions. Dietary induced inflammation no doubt plays a strong role.

They even suggest that updating or modifying SCD to make it more tolerable and "followable" would be beneficial and suggest teasing out where the benefits do in fact arise from using further studies to do so.

More so, even though there was initial improvement in the intestinal surface of those children adhering to SCD - over the course of a full year 50% showed a decrease in intestinal surface improvement over time. So a gradual decline or worsening.

So as everyone else says - diet isn't everything for every one. There's more to it.

If SCD happens to work for you, stick to it and get on with life. If it does't, then make adjustments as best you can and move on.

That's what most I think are saying. It's not a cure - it's maintenance therapy.
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kazbern
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Posted 1/20/2015 8:32 PM (GMT -8)
I need to update my signature because I have had a relapse and have been dealing with rectal inflammation for the past month. I've gone back to rectal meds (Canasa) to deal with it.

I have no idea what triggered a relapse. My diet hasn't changed. I have not been ill. I have not been unduly stressed. My hormonal status has not changed (think I'm finally menopausal for real).

Random. Sucks. Oh well. Canasa is doing its job.
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DaveF
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Posted 1/21/2015 4:49 AM (GMT -8)
Hi Kazbern
So sorry to hear you are not doing well. I hope things turn around for you very soon
Dave
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DaveF
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Posted 1/21/2015 4:51 AM (GMT -8)
Canada Mark
You have expressed your opinion very well except to clarify your recommendation to folks who are seeking to avoid drugs and surgery.
Do you have any recommendation, please?
Thank you
David
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NiceCupOfTea
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Posts : 11145
Posted 1/21/2015 9:19 AM (GMT -8)

dfdavedf said...
You have expressed your opinion very well except to clarify your recommendation to folks who are seeking to avoid drugs and surgery.

For most folks with Crohn's it isn't possible to avoid meds, surgery or both. Canada Mark explained in detail in your last thread why he needed to be on Remicade and why the SCD on its own wasn't sufficient. This is entirely normal for Crohn's disease.

Post Edited (NiceCupOfTea) : 1/21/2015 10:29:54 AM (GMT-7)

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