SCD Diet- what are your thoughts?

I posted this yesterday:

Actually some people think that the SCD starve out all the bacteria, both good and bad. That makes logical sense to me, since the 'bad' bacteria feed on exactly the same stuff as the 'good' bacteria. This guy explains it pretty well:

pubpages.unh.edu/~msbriggs/IBD-Briggs-beta6.pdf

It's a long read; the relevant part is at the end in the Diet section. For anyone considering the SCD, I would make the effort to do so, though, because there really is no need to cut all dairy and all grains per se.

The essay also says that the SCD will only continue working for as long as you stay on it. This is probably true; it is certainly true of other diets like an elemental or enteral nutrition diet.

Personally I don't follow any special diet, but if I did, then it wouldn't be the SCD: we have been eating grains for many, many thousands of years and there is simply no sound logic for cutting out all grains, imo. I'd probably just go for unprocessed foods and not too much protein (I ate loads of animal protein before I got Crohn's; obviously didn't do me much good): mostly how I now eat anyway, apart from my fondness for imported ramen (hey, they probably have a higher class of monosodium glutamate >_>) and occasional McDonald's.

I believe while diet may work for some, it will not work for others. I had tried weaning out all sorts of different kinds of foods. I tried to go without dairy for a month without any benefit, tried going without gluten for a month... didn't have any luck. I tried going vegetarian as I thought that maybe meat was causing issues... ended up in worse shape as I had malnutrients... and ended up on TPN for 2 weeks in addition to reverting back to meat. I tried cutting red meat out... no luck. I had tried no soda, didn't make a difference.

So overall, I think it truthfully varies based on the person. Some people may respond to diet changes... all I know is that I usually ended up causing myself more harm than anything actually helping me. Heck... I tried some "natural healing" stuff that someone sold me on for 100 dollars without it doing anything. I have realized that the best response I personally have gotten was based on the medicines I received, and nothing to do with my "diet". I am on a low residue diet, as that is the easiest for me to eat. But that isn't cutting anything but really healthy stuff and really bad for me stuff. Remicade, when it worked, worked well (no matter what I ate). Tysabri, I feel, will do the same now that the really bad strictures are out.

It really is person to person, try the diets but be careful not to cause yourself any malnutrition while doing it. For me, the diets don't help a whole lot....

I have been doing SCD for about 4 years. I am fanatically compliant and have not knowingly had one grain of anything that is not allowed on the diet. The diet has taken me from being sick for years in a row to feeling pretty darn good almost every day. When diagnosed my doc said I was a 6 out of 10 (10 being worst case) and would for sure be having surgery. My last colonoscopy and pill cam showed zero indication of Crohn's. perfectly healthy guts.

I have a different perspective than most on this thread.

"since the 'bad' bacteria feed on exactly the same stuff as the 'good' bacteria".
This is not consistent with current treatment plans and research. Both SCD and Low FodMap (more for SIBO) change the gut flora and both have more and more research showing a very high degree of success. Also this article was written by a physicist not a medical doc, who did no research (except to read what others have written) and who believes you caused your Crohn's by eating the western diet (NCOT did you cause your Crohn's?). I would not base any decision on this article. It is this type of article, someone's opinion based on zero research, that adds to the confusion. Our health is way too important to base any decisions on magazine articles and this type of ...document.

"be careful not to cause yourself any malnutrition while doing it"
SCD is mostly the healthiest diet you can eat. It is really really hard to eat SCD and not eat crazy healthy. I eat way more than the 5 servings of veg per day and now I also eat about 90% organic and local. All my blood tests show good to excellent levels of vitamins. This is caused by gut healing so I can absorb and super healthy foods.

"we have been eating grains for many, many thousands of years and there is simply no sound logic for cutting out all grains, imo"

We have NOT been eating GMO grains for more than a few years. These plants that make up so much of the American diet did not exist 30 or 40 years ago. Do you think there is no correlation between GMO and so many people being allergic to grains? Your argument has some merit if we were eating grains that existed for more than a few years. Also, historically it shows cultures all of the world first sprouting the grains. This seems to have been missed recently.

"I tried to go without dairy for a month without any benefit, tried going without gluten for a month... "
For most of us it is years and years of sickness. For most of us it will take considerable time to see improvements. For most diet is not an instantaneous cure, but rather slow healing. I went 8 months before I saw any improvement. If I did not commit for the long term I would not have reached a point where diet healed me.

"Many foods that are forbidden by the SCD such as starchy veggies and non-gluten grains are perfectly fine for me to eat. And other foods that are legal under the SCD such as shellfish and cruciferous vegetables are poison and aggravate my symptoms."

SCD recommends a food and symptom diary as the SCD legal food list is the max you can eat, not what is expected that you should eat. After 4 years on the diet there SCD legal foods that I have not even tried, like fried foods and beans. I do not miss these and am a bit concerned that they may set me back.

Every person has to do SCD a bit different. For me it is low carb, low fodmap, all cooked veg, a lot of protein, low nuts, high 24 hour broth, high gelatin, ....

"it does seem like it would be really difficult to follow"
At first it is tough to follow. You have to be fanatically compliant or it will not work. That means you have to know at a crazy level of detail everything you put in your mouth. And when you do the research you will find that virtually all prepared foods are full of garbage in America. This results in you having to prepare all your own food. No cans, frozen meals, restaurants.... However, like anything after about 6 months it feels pretty normal and after a few years it is no big deal, it is your 100% normal.

The food I eat every meal is crazy healthy and crazy tasty. I travel 3 to 4 days per week and am able to stay 100% SCD complaint. If it is really important, then of course anyone can figure it out.


When you go from sick for years to 100% clear pill cam and colonoscopy then it is pretty normal to want to share this healing path. Everyone has to make up their own minds (duh), but I hope this different perspective provides some help as you approach this difficult decision.

Healing thoughts and I hope you find a healing path that works for you
Davd

dfdavedf - your experience on the SCD is amazing.

What do you eat when you travel?

Approximately how much time per day do you spend preparing foods? Do you make your own SCD yogurt?

Davd.... no disrespect... but medicine has calmed me down before. ... it will do it again, and it was when I was even less strict than now. For some, this will work.... but others, it wont. No one version of this disease is the same. I have spent hours on making sure my disease is understood by my coworkers, boss, family, etc because they read stuff like this and think that my diet is the issue. I know what food is ok for me to eat, what isn't. It isn't any specific type of food either... very random. I have had past jobs I had to leave because I was blacklisted by other employees because I ended up in the hospital twice and they blamed by diet (real reason was partial obstruction due to strictures and dehydration). I was told not to eat certain food at work due to this. It was ludicrous and really upset me.

Again, I understand this helps some... but please do not say 'it will heal everyone if they stick to it for years'... because I am sure that it wont work for everyone, and I am not willing to spend years and years on a diet that will restrict my food intake to foods that aren't all items I can eat as it is now....

Post Edited (JakeB) : 1/19/2014 1:04:44 PM (GMT-7)

Usher... I appreciate that you accept that this disease is highly individual. That is all I ask... and I wish more people would speak about when they talk about the diets they do. If they help, awesome and very happy that there is another option to calm this crappy thing down for some people! I just don't want the uneducated people who don't have any experience with this disease (family, coworkers, etc that I have to spend so much time explaining my specific disease to) to get the idea it is diet only for everyone with the disease... that is all...

Good luck to you, and hope it helps!

I have no idea if it works or not. Have no interest in trying it either. After doing some research on it, way too hard to stay 100% compliant, I'd fail on anything that strict. Most people fail on strict diets, that's a fact.

For myself I need more hard scientific evidence that it works. I've seen too many people say it works right after they had surgery or while they are on medication also. They really can't say what is really helping them in those instances. Not to mention Crohn's is weird in that it can come in and out of remission on it's own. Then there is what we do know about a lot of us with Crohn's. A lot of us do not handle veggies, and a lot of us tolerate grain foods very well. Not going to give up grains, those are my safe foods, so nope.

I admit I get offended when I hear someone say all we need to do it change our diet and we'll be fine. It's a serious disease and I don't believe it's just what we are eating.

Does it help some people? Maybe. Maybe those people have more food allergies or sensitivities to begin with, and that is what is probably really being helped here. Not all of us will fall under that category, sorry. So if it works for you, great. For me, not interested.

Post Edited (Jen77) : 1/19/2014 5:59:07 PM (GMT-7)

i just have to say that i think the book is right when it says if the diet does'nt work in three months and you have no improvement then it's probably not going to work. i followed the diet for six months with no medications except pentasa and i had little to no improvement. all it did for me was set me up for a bowle obstruction. when you cut out carbs it is very very very hard to get enough calories. i was eating alot of meat because thats really your only sorece of dense calorie except for almond flour. now that i look back thats probably one of the bibgest flaws in the diet. eating three or four steaks a week will hert anyones intestines. i dont see the logic in eating almond flour when nuts are one of the hardest things to digest. i went to six months cus i really was hopeing for it to work, i'm not saying it doen't work for some people but for me there were some highlights to the diet and some downfalls to it. one of the funny things is that the lady who wrote the book was trying to find a cure for her daughter and probably based some of the results on how her daughter reacted to certain foods. she probably wasn't thinking this diet will cure everyones disease. P.S just something to think on.

i know, i was eating 4 to 6 eggs everyday and lots of chicken and fish. my weight just kept droping and didn't stablize.

HI
NY Sonner - Way to go. It is amazing progress and I simply can not understand why everyone does not give it a try

Rango - Sorry you did not do enough research on the diet to make it work for you. This diet is used by many folks to gain weight. One simple and delicious calorie intense food is to make yogurt out of whipping cream. This can be used to make ranch dressing and ice cream to name a few. There are many other calorie intense foods like avocado, butter, .... "one of the funny things is that the lady who wrote the book was trying to find a cure for her daughter and probably based some of the results on how her daughter reacted to certain foods" This is incorrect. The diet was developed by Dr Hass. The lady who wrote the book took became a doctor so she could prove scientifically why his diet worked. Nothing to do with how her child reacted. Although it did heal her daughter also. "eating three or four steaks a week will hurt anyone's intestines" Why?

Jen "Most people fail on strict diets, that's a fact." I agree, you state a fact. However when you are scared of huge medical bills, surgery and being sick for years in a row, I find I have more motivation than being a couple of pounds over weight. "Does it help some people? Maybe. Maybe those people have more food allergies or sensitivities to begin with, and that is what is probably really being helped here. Not all of us will fall under that category, sorry. So if it works for you, great. For me, not interested." There are a number of scientific studies (more being done as we speak), that prove this approach is highly effective for most.

NCOT - "And dave's diet would be actively dangerous for anybody who has strictures: the risks of an obstruction would be enormous. "This is not dave's diet, it is the Specific Carbohydrate diet. And again misdirection and false information. The diet can and should be adjusted for each individual. For example if obstructions are an issue, make savory smoothies. Lots of natural gelatin and nutritious tasty foods. Not the canned colors and chemicals. Not possible to cause an obstruction

"This idea that the intestines take months, even years, to heal is another myth. Actually, given the right circumstances, the intestines heal rapidly: if you can rapidly halt the disease process (by eg taking Remicade) the intestines will follow suit. " For some medication can provide rapid healing. Thank goodness. This is not correct when healing naturally. For many it takes time. I took so much time because I had to figure out all the tweaks I needed for me. For example, low carb, no blueberries, low fodmap... Once I healed these restrictions are more relaxed now.
"I just don't like the implication that Crohn's can be "healed" through diet" Why would you not like this? And if you like it or not, virtually all research shows a very high success rate with SCD (defined as a substantial reduction in symptoms)

jake - " 'it will heal everyone if they stick to it for years'" I did not say that. What I said is it has a very high proven success rate. Also, how can knowing everything you put in your body, eating only nutritious food, continuously listening to your body to figure out what works for you and continuously making tweaks, be bad. Common sense says it has to be way better than the SAD
" but medicine has calmed me down" I take medicine. I am glad medicine exists. I am thankful for medicine. However, it is scary as heck and I am trying to avoid it as much as possible. I take it daily, but trying to avoid ever having to take the really strong stuff again.
I know as well as anyone that this DD is more than taking a pill or eating something. I would be frustrated with anyone who knows virtually nothing about what we go through telling me, that if only I ate this or that I would be "cured". I have not had your experience. I bet it is highly frustrating.
I still have some bad days (but way more good than bad). I still take some meds everyday (low dose pentasa).

J wed - My experience is not that amazing actually. In fact it is pretty common for folks who do SCD. I know hundreds through SCD sites who have had similar healing. That is why I am so confused with folks who have never even tried it spreading all this false, negative misinformation.

"What do you eat when you travel?" As I do not eat in restaurants, I treat myself to lots of organic fruit and veg, pastured meat... I always have an electric frying pan. If I am traveling to a place I will keep one there, if not I buy one and leave it behind. I can buy a pan and quality food for less than it costs to eat out. I wash it in the shower. If I have to I buy a cooler and fill with ice, although most hotels will bring a small fridge in the room if you ask.
However, mostly I stay in hotel rooms with kitchens. Then I eat what I want. I eat lots of peppers and meat. All the colors and flavors are nutritionally dense and taste good to me. Very simple and healthy. Right now I am on a long term gig to the same place. So I make food a freeze it. Yesterday I made a great spaghetti sauce with zucchini noodles in the electric frying pan. I have not packaged it yet, but it will be about 5 or 6 super tasty, super healthy meals. I brought my yogurt with me. I stopped at Costco to get some organic frozen fruit. For "desert" I mix my SCD yogurt with the organic blueberries and raspberries and make "ice cream" To me it tastes amazing. At home I mix with the Vanilla double strength extract I make with Madagascar Bourbon beans and bourbon aged for 1 year (better than anything you can buy).

"Approximately how much time per day do you spend preparing foods?" I bet less than many. I have good equipment. I make big batches in big pots and freeze. I almost never cut anything with a knife. I use the food processor and immersion blender. I only use quality ingredients, so my food always tastes amazing. It is almost impossible to not taste great when all you use are 24 hour bone stocks, organic veg, verified pure spices, organic. pastured meats. I make and serve SCD food to lots of folks. They do not know it is SCD, they only know it tastes great.

SCD it not easy at first. There are so many things to learn up front. But after a while it is your normal and no big deal. Also this path teaches you about the American food supply and these things can not be "unlearned". If this DD was cured tomorrow I would never do back to the SAD diet.

Hope this perspective helps those who are considering natural healing. It works for me and thousands of others

Dave

Same here Jake, we enjoy occasionally eating out in a restaurant. On vacation the LAST thing I want to do is cook. I'm with you on not being able to eat the veggies too. Big no no's for most Crohn's patients. That would likely throw a lot of people in the hospital. The first thing my doctor says is low roughage. Not lets increase it! The foods I'm able to handle the easiest? Pasta's, breads, potatoes, all things ya probably can't have on that diet.

Dave,

I've read a few studies out there and no where did it say it works for most people. Quite the opposite really. So not sure what you've read.

Also the good equipment isn't cheap either. Talking about people that may not be able to work, or live on a tight budget. Now they need to buy food processors, yogurt makers and who knows what else. Preparing everything IS very time consuming, and takes a lot of energy. Something a lot of Crohn's patients are also pretty low on usually. As for expensive medications I don't pay anything for my Cimzia btw, and when I was on Humira I paid $5 a month.

I find it interesting that you say you take medication daily for your Crohn's, but hope to not have to take the big stuff again. Why do you take anything at all, if this is what "works"? As I said earlier, that is the theme I see in people on this diet. They take SOMETHING medication wise, or they started it after surgery (that put them in remission).

All of us don't want high medical bills, and being sick all of the time. Not just those who do the SCD. Restrictive diets have a high fail rate regardless of what the person is scared of. If I end up in the hospital it's not because of something I did or didn't do. I have a serious disease, and sadly that comes with hospital stays. You know from the years 2006 to 2013 I only took Asacol. I did pretty well too, and that was coming from almost bleeding to death in 2006 and having fistula surgery a few years before that. An occasional flare up that needed some prednisone. I ate what I wanted and only took Asacol. So does that mean Asacol is the miracle drug? Nope. Crohn's is a disease that is known to come in and out of remission. Thinking you will avoid being sick and medical costs because you do a special diet, is well IMO delusional. There is no cure for Crohn's and there is nothing that will stop it from coming out of remission.

Post Edited (Jen77) : 1/21/2014 2:49:20 PM (GMT-7)

Dave, your passion for the S.C. diet is clear, as is your passion (and knowledge) about what you see as a way forward for sufferers.

Referring to the diet you say: “It works for me and thousands of others.”
It could also be said that it does not work for thousands, since that is widely reported (perhaps because people cannot endure the often long 'tweaking period'.)
Some people may be able to taper their meds, eventually, but this does not mean that it is due solely to the diet. It is more complicated than that.

After reading the S.C. diet some years back, some logical flaws became apparent to me;

1. Honey is a powerful bifidogenic. That is, it stimulates growth of Bifidobacteria. It seems odd that it is recommended, given that the diet seeks to starve out all Bifidobacteria.

2. Soluble fiber is a super-food for bacteria, including Bifidobacteria. There is a great deal of soluble fiber in fruit and vegetables. This seems incongruous with stated aims.

3. Legumes contain complex carbohydrates, and yet many are permitted (including peanut butter).

4. Bifidobacteria species are many and varied. They are generally considered vital to the health of the large bowel, yet all are allegedly targeted by the diet. Other alleged 'bad bacteria' are not identified.

5. There are only three introduced probiotics (via the yoghurt). Two are Lactobacillus varieties, and the third is S. Thermophilus. These predominantly inhabit the mouth and small bowel. There is no introduced probiotic specifically for the large bowel.

6. Excluding starchy vegetables and grains eliminates dietary sources of short-chain fatty acids. Colonic cells function poorly without this fuel. (Some recent ad hoc modifications to the diet include the addition of resistant starches, and some complex carbohydrate sources.)

7. Liquid polymeric diets (containing intact proteins and complex carbohydrates) have been shown to be equally as effective as elemental diets, renowned in achieving remission. These include many so-called 'illegal' ingredients.

8. People often recover by using a variety of low residue diets that include many so-called illegal ingredients.

I don't want to discourage people from trying the diet. I do think the diet has merit, and that it can yield benefits, and for some even aid in remission.
I am a believer in diet modification, though it does appear to be entirely individual.
I think the success rates of generalized diets are often over-stated. People can become over zealous in their support for a diet that they think helped them, without realizing the negative impact it can cause for those unable to match the success, for whatever reason.

I understand that it must be annoying when people are not enthusiastic about something that you credit with helping you so much, or, if you believe they misrepresent what is involved.
Such is life ;-). Peace to you on your journey.