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Posted 4/28/2009 9:48 PM (GMT 0)
I don't understand why everyone just doesn't go on the SCD diet . . . what is stopping you guys from doing it. If you continue to take allopathic medicines, you WILL HAVE SURGERY!
Posted 4/28/2009 9:52 PM (GMT 0)
The SCD diet doesn't work for everyone, actually. Also, it's expensive, labor intensive in some instances, and time consuming. That being said many of us do not have the time and strength to stick to this diet...unfortunately.

What may be the answer for you won't be the answer for everyone else.
And f.y.i., it isn't the medicine that makes us go the hospital for the surgery, it's generally the severe inflammation and its effects that the medicine can no longer prevent.
Posted 4/28/2009 10:15 PM (GMT 0)
I am convinced that people who fail on this diet just don't try it long enough or are not strict enough with it. I am very familiar with the allopathic approach to the disease as I'm a fourth year medical student. The MD approach to treating this disease is dismal and no better than any other alternative treatment out there. It may be better in the short term resolution of symptoms because they use very powerful medications that have severe side effects. Prednisone is a nightmare and takes forever to taper. I know how it makes no economic sense for MD's to recommend a diet as first line treatment. If there are no studies to prove a treatment, they can't legally recommend it. I know how these people think as I used to be brainwashed the same way they were. I was diagnosed about a year ago and was in remission with asacol for a while. I remember reading about alternative treatments online and thinking they were nonsense, especially the dietary treatments. The only reason I thought that was because I believed what my textbooks were saying blindly. I also discredited anything that didn't have randomized controlled trial behind, or at least some kind of study, even a case controlled or cohort. And the only people funding these expensive clinical trials are companies that make drugs like Remicade and Humira (which can give you lymphoma, demyelinating diseases and lupus like syndrome). The western diet is responsible for this disease, especially if you have no genetic predisposition. Specifically, it's the refined carbohydrates, high fructuose corn syrup, starches and bread. Immigrants that move to this country that never had any family history of the disease are experiencing a rise in incidence just be being in the US. You have to give the diet at least one year. Do not give up on it if you don't see results within a month or even three months. You will inevitably have a relapse at some point but eventually you will be ok and off medications. The medications do indeed make you worse because they blunt the immune response to the pathogenic bacteria in your colon. Eventually the medications stop working for everyone and you will inevitably need surgery. I am genuinely angry that my GI doc didn't mention this diet right when I was diagnosed. He told me to eat whatever I wanted . . . he even had a nutrition fellowship under his belt. That guy skinned me for every dollar I had, so called IBD specialist. The dietary approach eliminates the antigenic stimulus and rehabilitates the immune system. It is the only way but I do admit that it is a huge pain to follow this diet initially. It's very expensive to go to whole foods almost every other day and cook, etc. But if you have the means and the family support, you must make this decision. It is the only way to take your life back. If you don't have a lot of money and don't have a lot of support from friends/family or have a job and takes up all of your time I guess you are out of luck unfortunately. Take the remicade infusions/prednisone, which will work for I would say approx 6-7 years on average then they won't anymore. Then you're headed for bad news. The hope for a cure for this disease by the MD establishment is nonexistent. They are investigating stronger and more harmful drugs because the ones they have now lose effectiveness. And with each step up they are causing more and more problems. This diet also steers you away from eating processed foods that inevitably lead to other health problems like cancer, heart disease, diabetes and obesity. This is a change in lifestyle no doubt. It sucks driving past every restaurant knowing that you can't eat there. It sucks that you can't just roll to BK and eat a chicken sandwich and drink a coke. But you know you what, you can get used to anything. Have strength and will power. This is your life you are talking about.
Posted 4/28/2009 10:18 PM (GMT 0)
Seriously do you really think we have not exhausted every available treatment from scd, makers, to faith healing? We are trying to find something that works for us.
I did strict SCD for several months and ended up in the hospital having multipule blood transfusion due to a horrible GI bleed.
Posted 4/28/2009 10:26 PM (GMT 0)
did you end up stopping the diet?
Posted 4/28/2009 10:51 PM (GMT 0)
Her point is that it didn't work. If you are a fourth year medical student then you should understand that one treatment does not work for every single person.

And while I understand well, everything you have written you have to understand that most of us have been through this as well. It's not uncommon knowledge the effect that processed foods have nor the alarming trend in autoimmune diseases in industrialized countries.
Believe me when I say all of us have done our fair share of research and will continue down that road for the rest of our lives. It's not as if we 'blindly follow' what our doctors and medical texts say either.
But you have to understand as well, as I've said already, that what works for one person will not always work for another and, as a med student, you have to realize this.
Posted 4/28/2009 11:00 PM (GMT 0)
jpnutritionfirst, welcome to the forum! For ease of reading in the future, I have a special request. Please consider breaking your posts into several paragraphs! My eyes are getting old... sad

Our whole family follows the SCD for my son who was diagnosed nearly two years ago now (read my bio below). It has been a God send for us. Others here follow it, as well. Still others say they've gone gluten and dairy free and cut sugar and hfcs. That's nearly the SCD!!!

I'm excited that you are a medical student who could, in the future, give the SCD greater credence among your colleagues. On one of the SCD sites there is a complete list of doctors nationwide who are proponents of the diet. They actually recommend it to their patients! That said, they are few in comparison to those who do not promote it. I was as angry when I discovered it as you said you were because my son's pediatric GI did not tell us about it and also said "no dietary restrictions or recommendations--eat whatever you want!" mad Imagine my challenge, then, convincing my son that I knew better than the doctors!

I'm also wondering as I write this if you wouldn't make a fabulous naturopathic physician. Better yet, go ahead and get your MD and then go on for your naturopath degree!!! Cover all of the bases! smilewinkgrin
Posted 4/28/2009 11:09 PM (GMT 0)
I am glad it works for you. But it seems like you are missing the point, SCD does not work for everyone. I do not lack discipline. It was take drugs or die from blood loss. Due to your question I think you do not understand the level of severity that this disease can reach. I was not able to eat for months after that GI bleed. So you can see why I think you might be a little cavalier with your assumptions. No medication or treatment works for everyone in the same way.
Posted 4/28/2009 11:24 PM (GMT 0)
I don't mean to attack anyone here that isn't on the SCD diet, but I'm just curious. So this is interesting that I guess some of you have tried it without good results. I had a flare recently and 40mg of prednisone for 2 weeks didn't do a thing. Then I added in vancomycin as well as starting the SCD diet. It took about three weeks where I actually got worse and had a lot of bleeding but then I saw dramatic improvement. I've been on SCD for a month now. I stayed with it even though I was getting worse because I knew bacteria are hardy organisms. They can form spores and lay dormant for a while. It's the overall trend over a longer period of time that counts.

For a while I felt hopeless. Now I've finally started to taper the prednisone and I'm stopping the vancomycin in about 7 days. I sincerely hope this diet is what got me into remission. I hope prednisone or vancomycin isn't what caused my improvement because those are going away. If the symptoms come back I might have to do Remicade infusions but I really don't want to. I pray regularly for a solution to this problem because this has changed my life dramatically in the last year.

After this happened I promised myself I would go into gastroenterology and become an IBD specialist, especially if this diet actually worked. But I actually think that would be a poor move for my health as it's a rough road to get there (3 years internal medicine, 3 years GI fellowship, 1 year IBD fellowship after medical school). I do believe stress plays an important part in bringing about flare ups. I started bleeding as I was studying for my first set of board exams. By the way, is it universal to be diagnosed at times of high stress? I'm taking a break from school right now to get better, but when I go back in a couple months I'm going to always have a skeptical eye on the MD establishment.
Posted 4/28/2009 11:58 PM (GMT 0)

Hehe...oh my... rolleyes

So many unanswered questions from you, JP.  You're a new member so why don't you tell a little bit about yourself and your experience with YOUR Crohn's Disease instead of starting off by BARKING your opinion.  Don't get me wrong - opinions are VERY welcome here so long as they are given in a kind, nonaccusatory manner. 

1)  You were diagnosed "about" a year ago, you say?  So.....how long have you been on the SCD? It doesn't sound like you've had enough time to be on the SCD "strictly" for over a year to know if it's had any PERMANENT affect on you...correct me if I'm wrong.  What has been your experience (within the past year) with the SCD?

2)  When did you stop taking the Asacol?  You said you went into remission for a while when you were taking the Asacol.  How long is "a while" and should we infer from that comment you are currently NOT in remission?

3)  Are you currently on any kind of prescription medications? 

4)  What kinds of Crohn's symptoms have you HAD or currently HAVE? 

5)  Would you say you have a mild, moderate or severe case of Crohn's Disease?

As a new member interested in the SCD, you might also be interested to know that the SCD has been a topic of discussion on this board for MANY years. And there are veteran members on this board who have stuck to the SCD STRICTLY for years but still had to have surgery because of the severity of their disease.  There are also people who swear by the SCD saying it has cured them. 

We've also discussed many times on this board the "all organic/homeopathic" remedies for Crohn's.  There's a guy on this board who was a bit like you...came in here all cocky, thinking he knew everything about Crohn's during the first couple of months after his diagnosis.  He was heck-bent on not listening to his doctor.  He refused the maintenance prescription drug. Instead, he went off on his own and started cooking his own meals; everything organic and was on the SCD for a couple of years. He even posted some of his recipes for us to try.  He was pumped up about how good he was feeling. Then one day, out of the blue, he got extremely sick, was rushed to the ER and had emergency surgery, removing part of his intestines where there was a massive blockage from a stricture due to the scarring from inflammation that had not been under control during the years he was on the SCD. He has SINCE said he wished he'd listened to his doctor and taken the maintenance drug for the inflammation.  He's convinced now that if he had taken it, he probably wouldn't have had to have surgery...at least as soon as he did.

JP, I think as a newbie to this board and to the world of Crohn's Disease you have a WHOLE BUNCH of stuff to learn about this illness and how it affects different people.  But I believe we can learn from you, too.  So please...do tell us more about YOUR CROHN'S DISEASE, how long you've been on the SCD and what all you've been eating to stay feeling so good...I'm assuming you're feeling good... :-)

Posted 4/29/2009 12:11 AM (GMT 0)
There are so many variables in what you buy and the littlest change can make you fail. I've worked in the Produce and meat department when i was a teen, i know all the stuff they spray, inject, and grow with. Some people's plumbing is just too damaged for repair. Some have inflammation in areas where SCD is less effective. Some take certain meds that make SCD useless.Sooo many situations, it cant possibly work with everyone :(
Posted 4/29/2009 12:13 AM (GMT 0)
Dr. JP.

You claim know someone who cures crohn's "98% of the time". Therefore there is no need for you to try the diet.

yours truly,
Mike
Posted 4/29/2009 12:45 AM (GMT 0)
Wait...you've only been on the SCD for a MONTH and during that time you've been on 40mg of Prednisone?!

I've been on a 5-week taper of Prednisone twice before. I didn't start feeling better from the drug until week #3 each time so I'm not surprised you thought it wasn't doing a thing for you after only 2 weeks.

I can't believe you've only been on the SCD for a MONTH and you're already claiming it to be THE diet for all Crohn's patients to be on...give yourself some TIME with this disease and as a med student, talk to some of the people on this board who have SEVERE Crohn's. IT WILL open YOUR EYES and maybe your MIND.

I truly hope for you that the diet is what has made you feel better but 40mg of Prednisone would make MOST people feel better. You can't take Prednisone and start the SCD during the same time and then come on this board and tell people the SCD is what will help Crohn's patients to NEVER have surgery!

The only way to TRULY know if the SCD can help Crohn's symptoms is by first not taking any Crohn's drugs (or Prednisone). Then you'd have to be on the diet for YEARS before commenting on it's effects. ONLY treat your Crohn's Disease with the SCD.

Like I said...there are people on this board who HAVE done that and it has worked for them. Some have tried it and it has NOT worked for them. The severity of the disease for each person has A LOT to do with what works for everyone. For those who the SCD seems to HAVE worked for, that's not to say in 5-10-15 years that SCD Crohn's patient isn't going to have to have surgery.
Posted 4/29/2009 12:56 AM (GMT 0)
Wow, keep in mind, people, that jp is just trying to help. Although, it did come across as somewhat abrasive. Anyway, I probably wouldn't have put it the way jp did, but I agree to a point. I honestly believe that if you start SCD when you have mild to moderate CD, and you stick with it for a few months, you will absolutely see improvement. But if you have had surgeries, such as the removal of your ileum, and your disease is considerate moderate to severe, the likelihood that this diet will work is pretty slim. The removal of vital bodily organs changes how your body will process food, and that will affect your chances of success with this diet. I do, however, believe it is absolutely crucial to your health to at least continue on a diet free of breaded, sugary, chemical-ridden food. You simply cannot risk other things going wrong while you are battling such a terrible disease. My family is not well-off at all, but I try my hardest to eat healthily. I generally do not buy strictly organic, but I make sure I have a diet rich in meat, fruits and vegetables. When we have a house, I plan on planting a garden every year to provide my own organic food!
Posted 4/29/2009 1:13 AM (GMT 0)
i wish i had the patience for a garden :(
Posted 4/29/2009 1:42 AM (GMT 0)
aoccc? SCD since 01, remission since 01. No meds ever. Are you an advocate of the SCD diet? I would be very interested in knowing more of your history with Crohn's since I haven't been around all that long. Plus the reason for no meds or just that the diet works for you? Will ask

or can reply in a new post.

Thanks,

Posted 4/29/2009 1:56 AM (GMT 0)
aoccc - I'm interested in your experiences too. My GI told me to keep a food diary and figure it out. But since I'm not sure what "good" feels like it makes it hard. (Okay, yeah, that apple I just ate isn't doing me any favors.) I just ordered the SCD book since I figured it probably wouldn't hurt me.

I've been HCFS and TFA free for about 9 years, and mostly sugar free (I was severely anemic last year and fell off the wagon) for about the same amount of time.
Posted 4/29/2009 2:08 AM (GMT 0)
Please, don't let our responses prevent you from continuing to share your opinions and experiences...but also keep in mind that statements you've given may be offensive to many of us who have tried very hard and experienced so much grief and pain in spite of our best efforts on diets like these.

You'll find many, many threads centered around the SCD and quite a bit of useful information on it.
Posted 4/29/2009 2:54 AM (GMT 0)
bammer,,,it is hard to be advocate because there are soo many with other issues that have come with this disease and SCD just isn't going to work miracles. But for some people that are mild to mod and only real problem is some pain and control, the diet can give you some growing confidence and control.

dup..i have probably about 5 years of food diary lol. It is useless now but when your learning what does agree and doesnt, its a very nice tool. Also helps when some things don't get sick until like a week later and you just cant figure out what did it lol/ There are also some very nice online diaries that are much more strict than me(i would try stuff just to see how long it would take to get me sick lol) .I also added a nice tropical climate and ditched the stressful job for one of less stress. Good luck there are so many resources out there
Posted 4/29/2009 3:59 AM (GMT 0)
JP - since you're a medical student, you may find the following interesting. It is a link to an abstract which suggests that Crohn's disease develops as a cross-sensitivity between antibodies for Klebsiella pneumoniae and several types of collagen. See: Pubmed. The development of autoimmune antibodies appears to be the result of an inadequate immune response to intestinal bacteria infiltrating the intestinal lining. Work done at Boston Medical suggests that autoimmune antibodies persist when the levels of TNF do not rise to a high enough level during the course of the infection. See: Faustman Labs.

Given that there are actual autoimmune antibodies, diet will not be an ultimate cure. For those that diet works for, presumably they do not have breakdown of the cell matrix releasing the collagen that triggers the autoimmune reaction. There is a strong barrier between the gut contents and the immune system when everything is working properly. That prevents presentation of antigens (bacteria or cell debris) from the gut contents to T cells. This barrier is compromised by several types of insults, resulting in permeability of the gut lining and the presentation of antigens to T cells, triggering the immune response. The known triggers are: NSAIDs, stress, gut infections and possibly food allergies.

Even if you are able to keep the gut lining healthy, other sources of collagen fragments can trigger the autoimmune response. That would be why there is a Crohn's-related arthritis and various skin and mucous membrane reactions. I am guessing that these are more likely to occur if there is some triggering inflammation that causes tissue damage which releases collagens at the site of the autoimmune response (the joints, due to injury, for instance). Diet can only keep the bacteria in the gut down, the autoimmune reaction does not vanish, even if the gut is quiet.
Posted 4/29/2009 4:12 AM (GMT 0)
JP, I was just wondering where you are going to med school? States or elsewhere?
Posted 4/29/2009 5:53 AM (GMT 0)
When I started Humira last July, my crohn's symptoms finally improved. When I started SCD at the beginning of December, they got even better. It took about 3 months to get the constipation under control, and 4 months for the fatigue to improve. I now spend more time out of bed than in bed for the first time years. My fistulas started getting better right away, and are completely healed now. I'm also getting to eat yummy foods that I haven't tolerated in a long time (hurray for pineapple and strawberries, although I still have to cook them).

As far as money goes, I don't think it costs me any more than my old crappy diet. I used to drink a lot of Boost and eat a lot of ice cream, neither of which are cheap. And a bag of chips or box of crackers cost as much as a bag of peaches. The only things I can't afford (but really wish I could) are organic produce, pastured meats, free range eggs, and raw milk (for the yogurt). None of those things are required for SCD, but I imagine it could certainly help improve one's health.

For anyone that wants to give SCD a try, DON'T RUSH IT! Some people think you can jump right in and start eating nut flour baked goods and raw fruits and veggies from day 1. Doing that will likely lead to failure. I'm almost 5 months in, and have yet to use nut flour (although I do use nut butter now). I don't think I'll venture into raw produce until a year into the diet, minimum. Take it slow and steady and give your guts a chance to heal before eating more difficult to digest foods. Also, if you have scarring in your terminal ileum, Elaine suggested to never eat whole nuts, spaghetti squash, celery, raisins, raw grapes, and the peels of fruits and veggies.
Posted 4/29/2009 11:31 AM (GMT 0)
Great info, Keeper!
Posted 4/29/2009 1:50 PM (GMT 0)
I tried the SCD Diet for a few months to see if it would help my UC. It didn't help me at all. I lost tons of weight and looked like I was going to die. I don't think it is a solution for everyone with IBD. I do however avoid unnatural chemicals. I find that this helps but only along with the medication I take. If I stopped the medication, I think I would be back on the toilet, losing tons of blood within a week. It's very annoying when people assume that because something works for them, that it will work for everyone. We are all individuals and have differenet tolerances. I can't tolerate that type of diet unless I want to weigh 90 pounds and feel like death.

Posted 4/29/2009 7:38 PM (GMT 0)
Wow, this is an interesting topic! Seems some of our emotions are as sensitive as our guts! (can't we all just get along)... ;)

Every post is correct, IMO... SCD works for some, not others. Meds work for some, not others, etc., etc., blah blah blah...

I was diagnosed with moderate UC in November and started on Asocol which had immediate benefits. I switched to Lialda after a month and have been in remission since December. I've read many many books on UC & Chron's and in my opinion, BTVC just made common sense to me. Luckily, my PCP was very knowledgeable on the diet and is very supportive. So, I thought why not? I started in January and, although a pain in the butt some times (like going out, traveling, etc) it's been amazing on my gut. Even though I was in remission from Lialda (bleeding and diarrhea) I can tell you that the SCD has stopped the bloating, gas and pain. I'm to the point now where I can immediately tell which food is hard on my gut and I either back off or try it cooked.

One unexpected benefit of the SCD is, strangely enough, cooking. I've really come to enjoy making whole, fresh meals. Firing up the grill, entertaining, etc. My wife and I spend more time together as we cook and more time with the kids around the table. I haven't found an SCD recipe I don't like. Even guests really love the cooking. The diagnosis has led me to change my lifestyle by reducing stress, taking time to prepare and plan, family time, etc. I've lost 50 lbs since last April (when my bleeding, symptoms started) but have also been exercising religiously. I'm even preparing for my 1st marathon in September!

You see, if you take the time and look back, you find there are blessings in everything, even our bad gut diseases!

RSW
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