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Specific Carbohydrate Diet (SCD)

My son is 11 was recently diagosed with crohns - last spring.

He has not had many of the symptoms such as cramping and severe diarrhea - he has been anemic, had low hemoglobin / red blood cell count, and growth failure.

We're seeing a pediatric GI specialist who had him on budesonide and prednisone and he gained 10 lbs. He has been off the steroids but on pentasa but has only gained a couple more pounds and is anemic again with low blood cell counts.

The GI wants him to go on a feeding tube for a few months.

We're also seeing alternative health practitioners and are looking for information on the specific carbohydrate die and would appreciate any experiences or thoughts anyone might have.

Thanks.
 

Kev

Senior Member
Hey Dad_01 sorry to hear of your troubles. I can't give you any first hand info on the SCD. There are websites dedicated to it that I looked into for my own research, but I found the regimen too strict for my personal tastes at the moment.
Essentially, the diet rules out specific carbs, I believe the focus is on strictly mono saccharides, no bi or poly permited. I think if you look around in here or the web, you'll find some links to it... and some personal testimonials about it.

something else you might want to look into... is LDN. I'm pursuing this myself, but i'm an old man who doesn't mind taking the odd risk. however, in doing my research, I read about the case of the 3 yr old with IBD who wasn't responding to traditional treatments. Parents put child on LDN, and were amazed with the results. Now, that's their anecdotal story, it may or may not be accurate, but it is worth looking into. not like anyone is marketing LDN, it's just another drug, and it's off patent, so it's ridiculously cheap. and it is extremely low in dosage.
 

Kev

Senior Member
Hey dad_01, no problem. Us fathers have to stick together. LDN is shortened form of Low Dose Naltrexone. naltrexone is a drug originally intended to treat opiate dependancy or alcohol addiction. for whatever reason, it works best on the latter... For those issues, the trial dosages were 300 mg, and side effects at those doses were noted. then for actual use, the dosage was dropped to just 150 mg, and it has been used with varying degrees of sucess at that dose for years. so long so, it is now off patent, meaning there are numerous generic forms of it available. someone, somewhere, started experimenting with this at VERY low doses... like between 1.5, 3 or 4.5 mg for the treatment of IBD n MS. There is a website http://www.lowdosenaltrexone.org/ that you can check.
There are also a number of users on here who are currently trying it, or waiting for their first prescription to commence trying it. I happen to be in the latter. It took me a number of visits to convince my GI to prescribe this for me as a trial. But, my other options were pretty scary, and the risks associated with LDN are very, very moderate.. sleep disruptions or vivid dreams. those I can handle.. Anyway, that's my decision. Look into it, check it out, it may be an option for your child as well. It certainly seems to carry a lot less risk and offer better results than a lot of the traditional meds that doctors will throw at you, ok?
 
I've been off and on the SCD. It is very hard if you are not a real good cook, though everytime I stayed on it rigorously I would start to feel better. Then I would decide maybe I could cheat a little and different problems would come back. I am not sure how effective it is over the long term, but according to the book about it over 2 years you can become completely healed.
 
AbstractDonut,

Thanks for your reply. I spoke briefly with an alternative nutritionist today - she was some kind of head nurse at a children's hospital for a while - who promotes a diet that she says is not as restrictive as the specific carbohydrate diet.

I've got an appt with her, to learn more about the diet she promotes.
 

Kev

Senior Member
That's great news. Let us know how you make out. I think one of the drawbacks of the SCD diet is not so much that it is so restrictive (tho it is), but realistically it's a very, very hard diet for a kid to maintain AND that the least deviation seems to undo a lot of the good it does. If it was just hard, that would be one thing, but it seems so unforgiving of mis-steps, and you just know that kids will have those...
If this alternative nutritionist has a less restrictive diet that isn't so intolerant of the occasional 'slip', AND it works, that info could be a godsend to other parents of crohnies... and to the crohnies themselves.
 
Do a search on LDN or Low Dose Naltrexone. You will find many good posts on this safe method of treatment. Several Links also.

Dan Bergman
 
Kev said:
That's great news. Let us know how you make out. I think one of the drawbacks of the SCD diet is not so much that it is so restrictive (tho it is), but realistically it's a very, very hard diet for a kid to maintain AND that the least deviation seems to undo a lot of the good it does. If it was just hard, that would be one thing, but it seems so unforgiving of mis-steps, and you just know that kids will have those...
If this alternative nutritionist has a less restrictive diet that isn't so intolerant of the occasional 'slip', AND it works, that info could be a godsend to other parents of crohnies... and to the crohnies themselves.

That's one of the things that I was trying to determine - on the scd, or similar diets - if you adhere to the diet 90 percent, do you get a lot less than 90 percent of the benefit.

And, as I see by your response, you think that cheating a little bit can greatly undermine the effects.
 

Kev

Senior Member
Hey dad_01... I've no first hand experience with the SCD, but the gist of what I've heard/read is that you have to stick to it, and that literally any slips makes one go downhill immediately. I don't know if it's a lifetime committment, but it apparently is a long term committment. Now, that could be a marketing ploy, but I don't think so, or it could be a built in excuse for it not working, again I don't think so. it seems to be just a fact that if your body is intolerant of those nasty old multi chain carbs, the least amount can trigger one big old nasty response... That's another sort of quasi reason I opted not to go that route. It seems to be a case of issue avoidance, rather than issue resolution. But then, I've always had a tendancy to be more than a little pigheaded/obstinate, OK?
 
I've told my son's GI doctors that we've been meeting with alternative nutritional people. They never seem that interested, or convinced, that diet can have a role in an intestinal disorder.

They tell me that there is no evidence that food is a cause of crohns - which has not been my position. It does seem likely, though, that certain foods could cause more irritation than others.

I know that apparently there are no clinical studies - no double blind studies - on the effect of diet on crohns. Me and the nutritionist figure that it is a political issue - who is going to fund a study that might show a link between diet and crohns? I don't think the pharmaceuticals would fund it. And I wouldn't expect the FDA to fund it - they are probably too tied to the lobbyists.

Oh well...
 

Kev

Senior Member
I've been fortunate in that the GI's I've been to have been a nice cross section. I've met those who discarded the idea of diet playing a role in the exxacerbation of Crohns, and on the other hand those who were convinced it played an integral role in recovery. I was also fortunate to go thru a lot of nutrition counselors before finding one who specialized in IBD. She was extremely helpful. For the dr's who think it plays no part, they rob themselves of any argument on the diet path you chose. For us here on the forum, I think the majority have come to the conclusion thru first hand experience that diet is vital. all we have to do is stumble upon a trigger food, and the lesson is learned. Think your child will come to a similar conclusion. now, how as a dad you deal with it till their grown N on their own, there I haven't got a clue. I had raised my boys before I became ill... but getting kids to eat right was tuff enuff w/o factoring in something like crohns. One of the positive aspects of my IBD is that it was me, not them, who developed it. At least, thats how I look at it.
 
You can cheat occasionally supposedly after 3 years. Or after you are completely healed, that just takes 2-3 years.

The diet wouldn't be so bad, but I have a hard time with some of the stuff on it, like the vegetables and fruits. If you are on it a while and find some vegetables and fruits your son can stomach the diet is not really that bad. If your son can stomach the nut meals, you can also bake quite a few things.

It was just when I was on the diet and fruit, vegetable, or nut, would cause major cramping. So I had to cut the diet in half.
 
My son doesn't have the diarrhea or stomach cramping that I hear so many others having. He mainly presents with the growth failure. So, given that, I wonder if the "cheating" on the diet would be an issue for him. My primary concern is whether it would seriously undermine healing of his inflammation.

BTW - next week we're getting training on using an ng tube.
 

soupdragon69

ele mental leprechaun
Maybe I am just being very thick here.... but I have never heard of "cheating" after a set period of time on any diet that is for your own benefit...

If you spend the time working out what your body accepts and doesnt surely you only compound the problem because Crohns never goes away with being the disease it is so you are then inviting trouble down the line again as you are tinkering with one aspect of your treatment?

Dad01 if your son presents mostly with growth failure then its a sure sign he hasnt been absorbing whether he has diahorrea or pain or not. Diahorrea only occurs depending on the area of the gut affected. You are very right to be concerned about undermining his healing process because he has no "tell tail signs" like most do.

I have had probs since childhood and didnt have pain either for many years and am in my late 30's now. I understand how tough it can be for him though in missing out on foods that his friends may be having and difficult for him to manage situations like that.

N/G tubes are easy enough to place by the way, I have done them for years in my place of work - let me know how you get on. Thinking of you all.
 

Kev

Senior Member
Hmmm, a bit narrow minded of me. I assumed the typical (if there is such a thing) scenario. But, since you're looking at growth failure, indicating poor absorption, + looks like the future has an NG tube in it anyway.. why not discuss with an IBD experienced nutritionist/dietician (just to get the 'official' medical take on SCD), do as much research on it as possible, and if no big red flags get raised, give it a try. I have no knowledge of how 'well balanced' nutritionally SCD is, or if there's a traditional 'recommended' diet that you may also want to explore. My very limited understanding of the goal of the SCD diet is to reduce inflamation... now, a less inflamed ileum should absorb better.. as to whether rolling back the inflamation in a person with poor absorption issues is practical, viable solution, or whether it's too late for that, only heaven knows

I developed this disease too late in life to offer any real advice. There are many
folks on here who've gone thru situations similar to your sons, at a young age.

If the SCD does the trick, and your sons typical symptoms aren't pain & 'D', the challenge about maintaining the diet IS going to be an issue. Not that your son can't be trusted.. (i don't mean to imply that).. But I've known folks who have as valid a reason as he to diet N stick to it... diabetes, heart disease, obesity at a chronic level... you name it.. But I have yet to meet a 'diet' person who never slips up... Hey, I think the majority of us here who watch what they eat breaks their own rules on occasion. Since pain N big 'D' aren't common to him, if/when he slips, there'll be no immediate tell tale signs. Maybe I'm just an old worry wart. I just know that, in raising my lil saints, getting them to eat right, do the homework, change their clothes, shower every other nite, and so on, and so on... was a 24/7 job.
 
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soupdragon69

ele mental leprechaun
I agree with you Kev about us all slipping too at some point or occasionally - "to err is human" they say..

I dont think you were being narrow minded I just voiced what was in my head after abstracts' comments..

You know me and my both feet being in my mouth alot!
 

Kev

Senior Member
Hey soup, simmer down... (oooh, love that one).. Relax. I didn't take offense. My principal concern was that I completely overlooked the possibility that the 'major' issue was growth failure... poor absorption... that sort of thing. My 'blindness' is simply due to when I developed my disease... I think we all tend to think around our own experiences when trying to put these things into context/perspective. Its not like I'm personally condemning me.., in fact, it has nothing to do with me. I think I jumped in because Dad_01 is facing something that scares the bejeepers out of me... a child with this disease. So, if it seems like I overreacted to what you said, or even overreacted to my own oversite
its more a case of I'd move heaven N earth if I could to spare a parent dealing with this... Think any parent who'd be spared that would... even if it just a case of "there, but for the grace of God, go I" Does that make any sense???
 
soupdragon69 said:
Maybe I am just being very thick here.... but I have never heard of "cheating" after a set period of time on any diet that is for your own benefit...

If you spend the time working out what your body accepts and doesnt surely you only compound the problem because Crohns never goes away with being the disease it is so you are then inviting trouble down the line again as you are tinkering with one aspect of your treatment?

Dad01 if your son presents mostly with growth failure then its a sure sign he hasnt been absorbing whether he has diahorrea or pain or not. Diahorrea only occurs depending on the area of the gut affected. You are very right to be concerned about undermining his healing process because he has no "tell tail signs" like most do.

I have had probs since childhood and didnt have pain either for many years and am in my late 30's now. I understand how tough it can be for him though in missing out on foods that his friends may be having and difficult for him to manage situations like that.

N/G tubes are easy enough to place by the way, I have done them for years in my place of work - let me know how you get on. Thinking of you all.
The NG tube equipment was delivered today. The GI had elemental nutrition sent with us. A friend of ours who works with crohns stuff for a pharmaceutical suggested that we start slow with him, in terms of total volume, and that, in the beginning especially, we don't use the elemental but something like Ensure instead.

The thinking was, if he spits up the Elemental, which were told has a very unpleasanat taste, we may be endangering his effort to engage in tube feeding.

I would be interested in what you think about this.
 
Kev said:
Hmmm, a bit narrow minded of me. I assumed the typical (if there is such a thing) scenario. But, since you're looking at growth failure, indicating poor absorption, + looks like the future has an NG tube in it anyway.. why not discuss with an IBD experienced nutritionist/dietician (just to get the 'official' medical take on SCD), do as much research on it as possible, and if no big red flags get raised, give it a try. I have no knowledge of how 'well balanced' nutritionally SCD is, or if there's a traditional 'recommended' diet that you may also want to explore. My very limited understanding of the goal of the SCD diet is to reduce inflamation... now, a less inflamed ileum should absorb better.. as to whether rolling back the inflamation in a person with poor absorption issues is practical, viable solution, or whether it's too late for that, only heaven knows

I developed this disease too late in life to offer any real advice. There are many
folks on here who've gone thru situations similar to your sons, at a young age.

If the SCD does the trick, and your sons typical symptoms aren't pain & 'D', the challenge about maintaining the diet IS going to be an issue. Not that your son can't be trusted.. (i don't mean to imply that).. But I've known folks who have as valid a reason as he to diet N stick to it... diabetes, heart disease, obesity at a chronic level... you name it.. But I have yet to meet a 'diet' person who never slips up... Hey, I think the majority of us here who watch what they eat breaks their own rules on occasion. Since pain N big 'D' aren't common to him, if/when he slips, there'll be no immediate tell tale signs. Maybe I'm just an old worry wart. I just know that, in raising my lil saints, getting them to eat right, do the homework, change their clothes, shower every other nite, and so on, and so on... was a 24/7 job.
Thanks for the advice. That's pretty much the route we've been taking. While we're been seeing a pretty conventional pediatric GI doctor (the doctor told us they would be satisifed he my son ate big macs three times a day), we've seen two alternative nutrition people. One of the nutritionists tells us she advises a diet that is somewhere between the SCD and a diet advised in a book called The Body Ecology Diet.

The other nutritionist uses a book called Breaking the Vicious Cycle which, if I understand correctly, is the SCD.

We're planning on goingn with the NG tube - we'll see how the training goes this Monday that we have scheduled - but I want to learn, and convince my son to use, the scd or something very similar.
 
Is there any section of this bulletin board where children have posted their experiences with NG tubes. I would think my son would be very interested in that.
 
Here is a post I found on a Lyme disease forum. I have not read the book, but I believe the general principles of the relationship of diet, intestinal health, and mental health.

Dan Bergman

Schizophrenia, Depression, and the Little-Known "Mental Health"/Dietary Link: An Interview with Dr. Natasha Campbell-McBride
by BodyEcology.com

Did you know your food can affect your mood? What you eat and the state of your digestive system can keep you healthy and happy or may cause schizophrenia, depression, and developmental disorders.

Did you know there could be a link between mental health and your diet?

Imagine treating schizophrenia, depression, ADHD and ADD, bipolar disorder, autism, and obsessive-compulsive disorder with food instead of medicine!

In the UK, Dr. Natasha Campbell-McBride has uncovered a link between mental health and the food we eat. Prompted to look outside conventional medicine for a solution to her own child's developmental disabilities, Dr. Campbell-McBride found that digestion plays a major role in healthy development, mood, and mental health.

Today we discuss her book Gut and Psychology Syndrome and the link between mental health and diet that could change your life!


Q. In your book, you talk about the gut-brain connection. What is it and why is it important to psychiatric patients?

A. No system in your body functions in isolation. They are all connected, so it makes logical sense that all of our systems (cardio-vascular, digestive, nervous systems) operate together and affect one another.

Most psychiatric patients suffer from digestive problems. They have unhealthy inner ecosystems where there is an overgrowth of bad bacteria, yeast and fungus; they cannot digest food properly. This creates a large number of neurotoxins that can move from their intestines through the damaged intestinal lining into the blood stream where the toxins are carried to the brain.

This reality makes digestive health imperative for anyone with a mental disorder. Correcting digestive health can treat the disorder, and in some cases heal it.


Q. Where do the dangerous neurotoxins come from that may cause schizophrenia, depression, and other mental disorders?

A. One source of neurotoxins is digestion of certain foods, especially processed foods like sugar, flour and milk products.

For example, many people who suffer from depression, schizophrenia, ADD,ADHD, and autism also have an overgrowth of a yeast called Candida albicans. Candida and other yeasts feed on glucose from sugar and digest it differently from the good bacteria in your gut.

Candida albicans (and other yeasts turn dietary glucose into alcohol (ethanol) and its by-product acetaldehyde.

These toxic products of impaired digestion can:

Reduce stomach acid

Damage your gut lining

Impair your immunity

Affect your metabolism

Cause brain damage
So for many people with digestive problems, consuming sugar is like consuming alcohol.


Q. Now it makes sense why sugar is known as the "white death." What about gluten and casein? Many people with developmental and mental disorders avoid them. Why?


A. Gluten and casein are two other dietary substances that are difficult to digest and may contribute to mental health problems.

Gluten is a protein found in grains, and casein is a protein found in milk and milk products. Many people with digestive dysfunction (and mental disorders) struggle to digest the proteins in gluten and casein. Their bodies turn these proteins into substances similar to opiates like morphine and heroin.

Researchers believe that these substances get into the brain and affect it just like the drugs would and could be a cause of schizophrenia, depression, and other mental disorders.


Q. So you're saying that improper digestion might be a leading cause of schizophrenia, depression, ADD and ADHD, and autism. How does digestion become so impaired to allow these disorders to develop?

A. Any of these mental health conditions is due to a complex set of factors that is different for each individual. Gender, genetic makeup, pre-natal nutrition, drugs, environmental factors and more all contribute to a person's development.

In most cases, those who suffer from mental health disorders like depression and schizophrenia, and from developmental disorders like autism, something has harmed the beneficial bacteria in their gut, sometimes before birth and sometimes later on in life.

Some common culprits that damage gut flora include:

Antibiotics

Over-the-counter pain killers

Steroids

Birth control pills

Diets full of sugar and processed foods

Disease

Stress

Dr. Natasha Campbell-McBride's book, Gut and Psychology Syndrome, shows how digestion can affect your mental health. With clear explanations and helpful diagrams, she clearly shows how food can change your mood, and more! While Dr Campbell McBride's dietary suggestions follow the guidelines of the Specific Carbohydrate Diet, Donna Gates recommends that EVERYONE read The Gut and Psychology Syndrome today to learn valuable information that will enhance your understanding of the connection between the brain in our gut and the brain in our head!

Q. How can we heal the intestines and in turn heal our mental health?

A. Diet and lifestyle are two key factors that can cause schizophrenia, depression, autism and other mental disorders. Similarly, diet and lifestyle can heal mental and physical health.

If digestion heals, then the brain can also heal. Soon, mental disorders will be a thing of the past!

A Great Complement to The Body Ecology Diet!

Dr. Natasha Campbell-McBride's book, Gut and Psychology Syndrome, delves into the functioning of your intestines and explains in detail how digestion and mental health are intricately connected. She also gives wonderful advice on how to heal your gut with diet.

This book is an excellent addition to your natural health library and will expand on concepts you've learned in The Body Ecology Diet. Both books together are key in your journey to mind and body health.
 

Kev

Senior Member
This may sound trite, (and I don't mean it to sound that way) but its food for thought. I also saw a program recently (although apparently it isn't all that new) entitled "Dr Brenda Watson's H.O.P.E. formula".. Some of it sounded extremely plausible, and she has evidently done quite a bit of homework on the subject of digestion. I am just a bit pessimistic because there are so many 'experts' peddling their diets, so I find each just a little self serving, you know?

I wonder if one could review some of the better ones, (pardon the phrase) and digest them all... and boil that down to a modified diet where you avoid the big bad items in common, adopt the good ones, and take it from there to see what happens. Like, if you could convince a child to avoid just a limited number of the really bad things... and that resulted in them experiencing real benefits, it might be easier to convince them to extend the list of things to avoid, and plus extend the list of things that are good for them (you know how popular & easy that's going to be) to adopt into their diet.... sort of like the sheik and camel.
 
Kev said:
This may sound trite, (and I don't mean it to sound that way) but its food for thought. I also saw a program recently (although apparently it isn't all that new) entitled "Dr Brenda Watson's H.O.P.E. formula".. Some of it sounded extremely plausible, and she has evidently done quite a bit of homework on the subject of digestion. I am just a bit pessimistic because there are so many 'experts' peddling their diets, so I find each just a little self serving, you know?

I wonder if one could review some of the better ones, (pardon the phrase) and digest them all... and boil that down to a modified diet where you avoid the big bad items in common, adopt the good ones, and take it from there to see what happens. Like, if you could convince a child to avoid just a limited number of the really bad things... and that resulted in them experiencing real benefits, it might be easier to convince them to extend the list of things to avoid, and plus extend the list of things that are good for them (you know how popular & easy that's going to be) to adopt into their diet.... sort of like the sheik and camel.
My reaction was the same toward a book that someone in Whole Foods gave me called "Patient Heal Thyself." I just briefly scimmed the book, which is about the author's amazing recovery from Crohn's. While there may be a lot of valid information in the book there was just too much promotion for me of products by a company owned by the author. Not having ways to verify scientifically assertions made by the author, the hawking of those products undermines the credibility of the book.
 
I have breaking the vicious cycle, the main idea behind the book is that all the complex carbohydrates that your body has to break down cause a bacterial overgrowth.

Such as your body cannot actually break down the complex carbohydrates without the help of these bacteria. In a normal person these bacteria pose no problem, but a person with crohn's mistakes the bacteria for harmful and puts the immune system on overdrive. Tearing yourself up. If you kill these bacteria off your immune system cuts out and the inflammation will go away.

All the things cut out of the diet are the complex carbohydrates, sugar(sucrose), starches, and breads. And you are left with the simple stuff your body can digest on its own. Meats, certain cheeses, most fruits and vegies.

You start off on a starter diet which once the diarrhea is under control you graduate so to speak to the harder to digest stuff, namely fiber, parts of the diet.

Anyway if you can stay on the diet the whole point is to give the gut a chance to heal all the damage that the inflammation caused, which is supposedly why it takes a while. Once that healing has taken place, I'm sure total time varies, you can put some complex stuff back in your diet. Just making sure that you never enough to start alot of inflammation.

I do think though most that get to the point where they feel perfect with the diet stay on it for the rest of their lives. They all seem to be real afraid of deviating from it.

Anyway what sold me on the book was all the amazon reviews...
http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818

Page after page of people talking about how they were able to stay on it and feel better. I know when I stayed on it I felt better, it is just so hard with no fruits or veggies.
 
Also, they have whole websites devoted to it, just look up SCD. They have whole websites which have nothing but recipes for it. They even have a website where you can order baked products that are made sugar free and with nut meal.
 
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