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Posted 6/7/2011 4:10 PM (GMT 0)
HI all, so a few of you were kind enough to introduce me to the SCD Diet... I bought the book and read it cover to cover. I have to say, that for 2 days, I've cut out all grains, sugars, sweetners and stuck to simply chicken, safe veggies and safe fruit. I feel incredible! I do have a few questions though...

I tried to make my own "Mayo" last night. Ew, gross. Can you get by with a store bought kind? Same question for their homemade yogurt... is it possible to use a store bought version....?

The rest seems easy enough.... but thanks to those who told me about it.... I hope that it continues to help. I'm tapering off pred for a rash starting today, so we'll see how the next few days go... but so far so good!

Posted 6/7/2011 4:36 PM (GMT 0)
That's great news! I hope this trend continues for you well into the future.

I do use a store bought mayonnaise that as far as I can tell is legal. It's called Canola Mayonnaise and its put out by Spectrum Naturals. There are no listed illegal ingredients on it:

Expeller Pressed Canola Oil, Pasteurized Whole Eggs, Filtered Water, Honey, White Vinegar, Sea Salt, Dry Mustard, Lemon Juice Concentrate.

If you live in a place with a good sized grocery store or health food store then you ought to be able to find it. Otherwise you can purchase it online.

There are no known store bought versions of legal yogurt.
Posted 6/7/2011 5:59 PM (GMT 0)
Jen, congrats on taking control and how fantasitic you are getting results so fast.

Do not be discouraged if you feel poorly in  a few days. Almost everyone goes through this. It is the bad bacteria in your guts dyeing off. This can happen after a week, 30, 90 and even the year mark.

Great you are doing the intor diet. Have you looked at pecanbread.com. They have the stages of foods. IMHO BTVC does not lay this out very well. The stages are not firm but for me and others it provides some very good indicators of what to introduce when.

When I started I did not know about this. I ate everything that was legal and the diet did not work. After about 6 months I had to start all over and then added foods very slowly. I am eating stage 3/4 now with lots of things I still do not take that are legal. I am spoiled feeling good and do not want to be sick again, so I am very slow and careful when it comes to adding food. I forget where mayo fits but it seems advanced for a few days on the diet.

Also, even though there may be legal pre made products out there, there is no way I would risk it right now. You need to heal first, and that takes being very careful and some time. I have heard about this mayo. I do nto take it. Besides it has too much omega 6 in it for me and I think we can make better.

Yogurt is easy to make.  I bought a 24 yogurt maker and a SCD legal yogurt starter. If you want I can walk you through the process, but do not be intimidated. If I can get it right anyone can.

Let us know how you are doing and let me know how I can help

For me and a bunch of others the diet is majic.

Dave

Posted 6/7/2011 6:01 PM (GMT 0)
Also, you may wish to look at this thred. It contains tons of great information and resources re SCD

https://www.healingwell.com/community/default.aspx?f=17&m=1533705&p=1
Posted 6/7/2011 6:17 PM (GMT 0)
I don't do SCD, but just wanted to wish you success with it!
I am thinking about making the yogurt again, though. I have the machine, but haven't made it in quite some time.
Posted 6/7/2011 11:01 PM (GMT 0)
dfdavedf-I am back on the SCD dave! I started flaring after a really stressful week so I am trying to get things back in line!
bum_Magnet- Glad it is working for you!
Posted 6/8/2011 12:28 AM (GMT 0)
Stages. Hmm. Good tip. Didn't get that from anything I'd read yet so thanks again Dave! I'll dig into that more. Very much appreciate all the info
Posted 6/8/2011 2:25 AM (GMT 0)
Hi magnet

For me the stages are critical. The diet does not reequire it but many find it very helpful. I am one of those that really find it helpful. Also, depending on how you are doing you may wish to look at Live without bread. It talks to low carb and this too has been a big deal for me

pmed, you old hound dog, how goes it?

I have to know, why did you drop scd, was it not working? was it working too good? Were you 110% compliant? I am sorry to say butI am quite sure the bee propolis is not on the list. If you want i can ask some folks.

Do let me know but I hope things are good, and getting better

Dave

Posted 6/8/2011 3:24 AM (GMT 0)
MY mom put me on this for 6 months. Maybe I didnt wait long enough but it didnt seem to do much.
Posted 6/8/2011 12:03 PM (GMT 0)
Sooper, 6 months is probably long enough that you should have seen some results. I've heard of cases where it has taken that long and even longer to see results. But for most people for whom it works, you should see improvement early on. That said, SCD seems to not work at all for about 10-15 percent of the people who try it. I'm sorry to hear it didn't work for you.
Posted 6/8/2011 12:59 PM (GMT 0)
dfdavedf- I stopped because of the flu-like symptoms. I really need to learn to live with the diet but I have a problem with the nut flours and it it is hard for me to live forever without bread so I do strict scd to get me to remission then try to live with a modified version. Although, I am flaring now thanks to chocolate blackout cake from Whole Foods. Yum, good but I am paying for it now! LOL! If you could ask about the bee propolis, I appreciate it!
Posted 6/8/2011 1:33 PM (GMT 0)
Hey Sooper

I was on SCD for 6 months and it was not working for me also. But instead of dropping it, with some encouragement from some folks here I really looked at what I was doing and started over.

The first thing I did was really look at EVERYTHING I was putting in my mouth. I found 2 illegals. The second thing is I started the diet over with the intro diet and very slowly added new foods. After a year I am still only on stage 3 with a few stage 4 foods.

And the third big change was going low carb.

At first I thought all you had to do was read BTVC and you were good to go, however after 6 months I found out this is not true. You really have to find out what works for you.

So, we were in the exact some boat, 6 months with little or no results. But making all the changes and going back to the intro put me in remission in about 3 or 4 weeks. I have been between good and darn good for about 5 months now and to feel healthy again is fantastic.

I did have one weekend last month where I felt crohnie but I think that was due to too much nut butter and honey one day. I got over confident in my guts, but again I was called back to reallity.

I do not know if my situation is relevent to yours, but after 6 months I would not drop it but would really give it a chance for a least a bit more, but you will need to make some changes as for some reason it is not working the way it should for you

let me know if I can help

Dave

Posted 6/8/2011 1:41 PM (GMT 0)
Hi Laughing Willow
You quote that SCD works for about 10 to 15% of folks. Can I please ask where did you get these numbers? I would be really interested to read about the study, or is it your experience you are referencing?
I honestly feel like it would be really hard to generate any numbers that are valid. You have to be fanitically compliant and a lot of folks eat illegals by accident. Then there are all these tweaks that you have to figure out. One person can eat eggs, the other person can not....

My guess is if you are fantically compliant, you go very very slow when adding foods (I mean months, not weeks), and you look at all the balances carbs, vs oils and protiens, Omega 3 vs 6... that the success rate is much higher. However, I have never seen any study so this is just a guess and that is why I am interested in whwere you got your numbers.

Thanks
Dave
Posted 6/8/2011 1:57 PM (GMT 0)
I don't want to be that one.. But If there were a magic diet.. Wouldn't the doctor know about it ? Also.. When it take more that 6 months, how do you know it's the diet that make you better since the diseace evolve like a roller coster. Before getting meds for it (before being diagnosised) I use that have bad week and good week without changing anything.
Posted 6/8/2011 2:22 PM (GMT 0)
Hi Tommy
I think you raise a very valid point. Why don't doctors tell us about this diet. There are many theries but no one single answer. One reason I thought of, was because perhaps they did spent time at some point talking about diet but so few folks are willing to actually make the radical life style change that they no longer spend time talking or learning about diet. I think you ask a very valid question but I do not have an answer that I can back up.

The second point you make is valid also. How do you know what is really happening as this DD is so up and down. This one I can answer. I do not know 100% for sure what is causing my remmission. It could be the drugs, or just crohn's doing it's own thing, or the diet. I do not have another me, not on the diet to compare to.

However, the facts are, I am on the diet, I am reducing the medication and I am in remmission. Additionally, I was feeling crappy everyday until I went on the diet correctly. So I have a little bit of eveidence that it is the diet, and I feel good, so for me I will not change anything. I am convinced it is the diet, but I do not know 100% for sure, like you said.
The diet is designed to change your gut flora. I am in a study that looks at gut flora. Perhaps there will be some proof, at some level coming out of this study. If so I will let you know
Dave
Posted 6/8/2011 2:43 PM (GMT 0)
And I wish you good luck it ! Since I'm in the milder case of crohn's, I probaly didn't have suffered enough to have the will to change that much my habs. (The change it 'cause to my life are already big enough for the moment). Still working on accepting the disease.

I still wish years of remessions for those who have the will to do it ! =)
Posted 6/8/2011 2:50 PM (GMT 0)
Dave, I've been trying to find the exact quote on the web from Elaine Gottschall about these numbers, but I think I remember it fairly well.

These numbers are strictly based on anecdotal reports that Elaine personally knew about or heard about during her years of research. If I remember correctly, she stated that to her knowledge the diet did not work for about 10-15 percent of people who tried it. She was very dedicated to trying to determine why this was the case. Remember, this lady was a housewife who went back to college after the age of 40 and received advanced degrees in nutrition. She wanted to be able to study in a laboratory setting the effects of nutrition on the human body . But she could never pinpoint a reason why the diet did not work universally.

She theorized that perhaps some people were incorporating illegals unknowingly or that there was some biochemical mechanism unbeknownst to her that was preventing healing.
Posted 6/8/2011 2:52 PM (GMT 0)
Well, I must say that although I do trust my doctors (partially), there is a part of me that now questions my doctors' motives more than ever. Right now I'm in a drug trial. These docs are being paid by the drug companies to recruit candidates and run these trials. They don't get paid if I find an alternative to medication. If I find a diet that fixes me.... they don't get paid.... that's my gut feeling as to why doctors don't tell us about this kind of option. Just my two cents....
Posted 6/8/2011 2:57 PM (GMT 0)
As to why doctors don't tell us about this diet if it works, the reason is simple: most doctors neither care about nor understand the effects of diet on the body. They receive very little education about nutrition in medical school. That's not to say that things aren't slowly changing, but it's going to take a paradigm shift before a new generation of doctors takes a serious look at nutrition and its effects on health. Plus, it's a whole lot easier to make money by pushing pills on a patient and show them out the door so they can see the next patient and push pills on them and show them out the door...
Posted 6/8/2011 2:58 PM (GMT 0)
Well said, Willow! Docs don't make money on us being well. Period. I am learning very quickly that I have to be the advocate for my own health. I have the right to questions decisions and ask for 2nd opinions.
Posted 6/8/2011 3:06 PM (GMT 0)
Funny story: last time I was getting Remicade, my nurse told me how bad the diets were of the GI docs at the office. She said that they had recently had a catered lunch from some fast food place and one of the docs looked out over the table and spread his arms and said, "This is what keeps us in business!"
Posted 6/8/2011 3:08 PM (GMT 0)
Laughing Willow, this diet works for some but NOT all. We had a mod who gave this diet a really good shot and it only made her bleeding worse, so she had to stop. Its great that it works for some, I happy for them, but its not the end all to be all for everyone. I personally have alot more success, and less foods that are forbidden on the low res diet. Maybe my diet isn't for all, but its what works best for "me".

As for pills, they have saved more than a few us from a far worse fate. I didn't take my meds as I was supposed to and ended up with two surgeries within 3 years due to complete obstruction. Diet alone will not cure Crohns. Diets and meds should be considered as complitmentary of each other always. Hugs!
Posted 6/8/2011 3:48 PM (GMT 0)
Not trying to be argumentative, but I've been pretty clear throughout this thread that the diet does not work for everybody, nor have I ever referred to it as a cure.
Posted 6/8/2011 4:15 PM (GMT 0)
I am sorry but I did not read your post correctly Willow, I thought you said it works for 10 to 15% not that it does NOT work for 10 to 15%. I think I read something like what you said also. It really kind of sucks that there are no proper studies. I have an opinion; it is nothing more than that. Other agree or disagree, but just like me their inputs are not controlled and their sample is too small.

Also, one thing I have really learned from this forum is to keep taking the meds. I am reducing as I really would love to get off the steroids, but I have no intention of eliminating as I do not believe diet cures. I do believe that diet can help to control and even put into remission if you are one of the lucky ones and not in the 10 to 15% (or whatever the correct numbers are).
I would love to hear a doc weigh in on this nutrition discussion. They see let’s say 40 folks per day. All 40 of those folks know that they should eat well, get sleep and exercise. Everything we see and read says virtually the same thing. Yet most do not. Is it really on the docs? Maybe they see themselves not as responsible for everything but really only for the pills. My daughter had issues and was seeing both a psychiatrist and a psychologist. One doc was for pills the other for therapy. The psychiatrist was very up front regarding this. Believe me, I want someone to tell me what to do re this DD. I will do anything, but maybe it is just wrong to expect docs to be that person.
I started off mad at docs, but the more I think about it from their perspective I am not sure I am. I think if I studied for many years and incurred big debt I would want to get paid. If I was ultraistic and took my time/money to talk to folks about diet I would only do it if they listened and did something. I know for sure if I did this for a few years and 1 in 100 actually did something, I would consider it a waste of my time and money and would no longer do it.
I am making a guess as to what a good person who is a doc might think, but I do not know, and I am not so mad at docs anymore when I consider it from their perspective
Posted 6/8/2011 4:52 PM (GMT 0)
I think a lot of docs are scared of lawsuits too.  They can't say for sure what diet works best for everyone, so they don't even suggest it. 

Even my GI doc, who is part of the SCD study at Rush (and other studies on nutrition and Crohn's) still doesn't want to say one diet works better than another, and won't even start talking to me yet about reducing my medication, etc even though I feel great and all of my inflammation markers are down to normal levels.

For me, SCD has been such a gift.  I've been on it for almost 5 months and have never felt better.  I went to the doctor pre-SCD and my CRP level was at 66!  A month into the diet it was down to 15.8 and last visit (after about 4 months in) it was down to 6!  It is so encouraging to me to not only feel so energetic and good, but to have my test results prove that things are improving. 

I know it isn't easy to modify your diet, especially given everything else Chronie's deal with, but I feel like it's so worth the effort to at least try SCD - and/or other diets mentioned on these sites - and see if you can feel even a bit better.

 

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