SCD - My Experience

I remember the first time I heard about SCD. It 1995, I had UC for 10 years and I was just starting my fourth flare. I was very excited about a solution that didn't involve steriods or enemas. Diet is something I can control and I'm a good cook so I was eager to try it. I'm also a technical person so I really enjoyed reading the "scientific" logic explained in Elaine Gottschall's book "Breaking the Vicious Cycle" concerning the "how's" and "why's" the diet would help my ulcerative colitis. I knew it was going to work and was upset that my doctor didn't believe in it.

I researched the diet and theories more and was ready to give it a try. We have a great organic food store here that supplied me all the essentials.

I followed the diet to the letter--giving it 3 weeks. After the first week I had minor bleeding with cramps and 8 BM's per day. In the end my bm's were extremely bloody, cramping was very painful and BM frequency had increased to 30/day. I also developed a fever the last several days which was the straw that broke the SCD's back. I required a lot of steriods and other medications to bring me into remission which I was able to achieve 6 months after stopping the diet.

I read the posts from people that say SCD helped them and how great it is but there are far more people that have tried special diets that don't bother to share their experiences. I want to share this to show people another side of the story. In the end SCD is just a theory and the evidence is anecdotal.

Food may aggrevate things for me (i.e. beans give me gas, fruit gives me diarrhea) but my 22 plus years experience with UC says diet doesn't bring on a flare or get rid of one.

In my experience, the SCD is not a one-size fits all diet. Many folks need to make modifications to the diet to get it to work for them personally. For instance, the homemade yogurt is a cornerstone of the diet, but I was never able to tolerate it in any form... and I tried everything, even tried making it with goats milk. The baked goods made from almond flour are also a problem for a lot of folks who are just starting the diet and are in bad flares with alot of intestinal inflammation. Many go overboard on the nut flour cookies and breads and shoot themselves in the foot. Other things like beans and raw veggies are technically SCD approved, but are very poor choices for those whose digestive tracts are highly impaired.

The diet is already so restrictive, it's hard to mentally accept you may personally need to limit yourself even more - especially in the beginning stages. There's alot of personal trial and error involved within the SCD food choices. It's a tough process, but it can pay off if you keep a food journal, limit yourself to a few very safe foods initially and really stick with it.

Burli,

I commend you for giving the diet a try. For me, I've never tried their recipies and I doubt I ever will. I prefer to follow the bare bone essentials of the diet, which works for me; that means no cheeses, no beans, no canned foods, etc. Everyone is different and there's no one-size-fit's all program with any diet and it looks like meds (side effects and all) maybe your only option for relief.

NBT

I could also add that I had the first and only totally PMS-free period in my whole life while on the SCD. I also noticed my TMJ headaches went away. So many of these things are seemingly unrelated, but all respond well to the diet. As Elaine says, (paraphrasing here) whatever we eat that we're unable to properly digest and assimilate does us harm. That's really the premise of the diet, but it does have to be adjusted for your personal situation and body chemistry.

In the interest of honesty and telling both sides of the story, I'll say there used to be some pretty fanatical followers and their militant attitude about the diet - absolutely no cheats of even tiny amounts of forbidden foods, including communion wafers - and their condemnation of some folks who really struggled with the diet - if you're not getting well, you must not be doing it right! - was a turn off to me. When folks are sick and suffering, they need assistance and understanding, not a verbal attack.

Oddly enough, back in the day, Elaine herself used to get on the listserv and respond to some of the debates. When pinned down, she admitted her insistence on "fanatical adherence" in the book was put there primarily because she knew it would be human nature for people to want to cheat and some folks, once they've cheated, have a hard time getting back on track.

I don't do the SCD, but I do follow a special diet.

I don't eat: pork, beef, wheat, corn, alcohol, carbonated liquids, and anything with sugar (cake, candy, soda, fruit)

I do eat: baked fish, baked chicken, collard greens, swiss chard, steamed rice, beans, soy milk, soy cheese, rice crackers, oatmeal, vitamin supplements.

If I stick religiously to the diet, my proctitis improves about 65% all by itself. I still need the Rowasa enemas to stop a flare.

Bloating and gas are especially caused by sugar for me. If I cheat, I can really tell a day later. There's something called Fructose Malabsorption that I believe I may have. It makes it difficult to digest white sugar or high fructose corn syrup, because your body can't take fructose to the liver to be digested. Instead, it ends up in your large intestine, where that sugar is eaten by bacteria. The bacteria makes gas and acid where it shouldn't be.

Now, I think everyone is different. Some people may have fructose malabsorption; others may have a bacterial infection; others may have an overreactive immune system. The last would be the most difficult to treat, and it seems to me that diet wouldn't have any affect on it.

I don't think diet modification is a one size fits all plan that works for everyone, but everyone should try it at least. If it doesn't work, then at least you know that too.

ive been doing SCD for almost 11 months now. I go in TODAY for a scope to see how it's helped or now. I do FEEL better....but nothing is formed and there is still energy.I think its just improved my health all around in other aspects--energy levels and more steady calorie intake and that's bled over into helping with colitis.

2 odd things of note for me:

-before SCD i had a very low fat tolerance. more than 10-15 g at a time would often set me off. SCD isolated my fat intake to eggs, meats, cheeses and oils. I've had upwards of 90g in a single meal and still felt great. heck...actually it made me feel better. I've also lost weight like crazy..almost to dangerous levels, despite having a fat intake of triple what I used to take.

-I developed a mild flare WHILE on the diet and wanted to go off it--my doc said he really was curious to try somethings unique to my situation,since I was good about following directions. He prescribed rowasa, which in turn turned the mild flare into an uber flare. It turns out that during the progress of the diet my body had developed an intolerance to 5-Asa. Under his insutruction I stopped rowasa and chopped my colozal dosage to a minuscule amount. I felt better the next day.



Anyway...SCD is doing SOMETHING....but I'll find out in about later today if it's actually healing my colon, or if its just masking symptoms.

well, initial colonoscopy results were poor for me. it seems that a lot of my colon is still inflamed. I've been on SCD for about 10.5 months, and I'm thinking it's about time for me to call it quits. I respond to most therapies well at first, but the colon 'adapts' over time and I'll become sick again---it seems SCD is no different.

It's probably safer for me to drop off of SCD too--I was having difficulty maintaining weight.

Really interesting to hear everyone's experiences with the SCD. Sorry blankslatejoe that your results weren't looking great - must be really hard after you've put so much hard work and effort into the diet.

Burli - I think I feel similarly about the diet. I tried it over a year ago but only for 2 weeks due to a number of reasons-mainly because I was feeling SO weak and thin and sick that I could barely walk and also because I had started Azathioprine at the same time and I didn't want to continue the diet and not know whether it was working or whether it was the immunosuppressants, which makes sense for me as doing the SCD is a huge commitment (financially too) so I want to know if it's working for me or not...

But since that time I can't forget about the diet and am holding it in mind, I suppose as a future option, since I feel that being on the highest dose of immunosuppressants that my body can take is kind of the last option medication wise (perhaps I'm wrong)...

I think there'll be a time in the future when I will give it a proper go as the 'healing through food' speaks truthfully to me somehow and I've been continually learning about the diet over the past year. I still make the yogurt which I love and eat every day and I am gradually changing my diet in a general SCD direction so that perhaps when I do come to do it seriously it won't be such a drastic change...

One thing I've come to understand from other people's experiences about the diet though is that it can take a really long time to really start working - like over a year in some cases so it really isn't a quick fix but possibly a long term one? It seems people have to go through one or more flares in the first year before they 'settle' into the diet. I don't believe that a few months are enough to tell whether it will work for you or not.

She said the same thing to me, personally, and - in retrospect - I feel that can be misleading. If there's some staple of the SCD that is irritating to you personally, it could appear the diet doesn't work. It takes alot of patience and keeping a faithful food journal to develop the version that works for you as an individual. If I'd kept eating the yogurt, I'd never have made progress, but I dropped it out and substituted a non-dairy probiotic powder instead... and voila.

Researches to this date have all concluded that diets are specific to each individual as to what they can tolerate so merely choosing something like SCD may be tolerated by some yet has shown will not be tolerated by many. I did not respond to SCD but have constantly been monitoring my diet over a long time.

Certain foods bother me and when flaring but I've never been able to use foods to get out of a flare and I do respond well to my own diet when in remission as do most anyone.

Very limited 'pilot' studies of small groups have only been performed to date on effects of diets, supplements and 'naturals' on IBD. None are large enough to draw conclusions rather only point to further studies. A decent study would require thousands. That's not been done for SCD so no matter how popular it is it's not been shown to 'work' for ulcerative colitis or IBD in general.

One interesting study performed at UMASS (email Gioia, the lead researcher: [email protected] for more information). She read through 5000 papers on IBD and said only 3-5 were related to diet (that's how little there is to date). She said oats are tolerated well and this was a big improvement and difference over SCD.

Gioia's diet 'varied widely' from SCD but used the theory of feeding good gut bacteria while starving the bad. They used 11 patients in a 'retrospective study' and those patients were chosen because they reported they had already responded to diets with respect to their IBD. Interesting is that their patients tolerated soy well while SCD says its 'very inflammatory'. SCD has a lot of anecdotal evidence and theories which are not proven but at least played a part in getting the research thinking towards studying diet effects on IBD further. More so would be the general believe we all have that how can this not in some way be at least connected to what we eat.

So the UMASS study on 11 IBD patients used a diet called Inflammatory Bowel Disease – Anti-Inflammatory Diet or IBD AID's (it avoids gluten and simple sugars yet allows gluten-free grains like rice and oats. Gioia stated that oats are a 'pre-biotic' in that they ferment in the gut and feed the good bacteria (a pre-biotic). Probiotics were also used.

The researchers at this point still caution not to come off meds without consent of your doctor. Not near enough is known yet and I've seen so many postings in just here of people reporting success with a diet or supplement or procedure (FMT, etc.) then years later they are on drugs, sick or have had surgery. Stay on your doctor's medications and if your doctor is not willing to work some with diet as you wish then look around for any better ones but please just don't tell yourself (I'll try 'this' because those medications are harmful).

I notice online that many websites on SCD and other supplements and remedies are flourishing on the net so be cautious also thinking just because they have professional looking graphics, thousands of testimonials and their knowledge of medicine, food and nutrition seems credible they, themselves, will be the first to advise you to listen to what your doctor advises; not them. They admit they are not doctors and should not be used as such.

I've continuously tailored my diet while working with my GI.

@princesa
You said, "...In my experience, after being in remission and such great health for so many years, I started feeling like I could "get away" with all kinds of cheats. Because nothing bad happened immediately, I took it as a green light to cheat even more. Gradually, it starts to catch up with you. Yet, because you're enjoying yourself and symptoms aren't too bad at first, you try to ignore them. Once you face up to the fact you're on your way into a flare, it's difficult to get things turned around again. It's like a large ship... it doesn't turn on a dime. Now, I regret letting things go for so long and I'm coming to terms with the fact that I'll have to remain on a special diet the rest of my life, if I want to achieve glowing good health again and stay that way."

Thank you. I noticed from a recent post you're still in remission and using a combination of Paleo/SCD.

Even though in remission since Jan 2010 I want to try a diet more tailored for me which is similar to the UMASS study I mentioned above (IDB-AID). It's seems more logical to current science and also more aligned to what I know I respond better to. I appreciate your feedback.

Maybe I can come off my harsher meds at some point.

The patients in the UMASS study responded after only one month. I know SCD did not help me out of a flare and after being on it for 3 months prior to starting a flare that seemed enough to convince me it's not tailored to suit me. That should be enough time. I like the UMASS study's approach in feeding the gut prebiotics like oats which are supposed to ferment in the gut and feed the good bacteria and I've always done well with rice which is also allowed. Also soy is, by SCD definition, a 'highly inflammatory food' yet all 11 patients in the UMASS study tolerated it well. I've never had problems with say either.

Elaine just wrote her book the best she could, tried to help many but the science has progressed greatly since her mid 90's book. With more studies coming we'll learn only more.


@Jane123
You said, "...And let me emphasize again - the effect the SCD diet has is a cumulative one. I could go out right now and eat a hot fudge peanut butter brownie sundae and I likely would not feel a difference. HOWEVER, if I continued to cheat, the bacteria in my colon would start to over grow and I'd sail into a flare. I cheat here and there. Nothing happens. Think of the SCD as a marathon, not a quick fix.


Thank you. I appreciate the comment and understand your point and the theory but SCD isn't tailored for me as it isn't for many. We'll see how I do following my own diet and I've also learned other things about myself and my IDB.

Early in my disease I went 3-5 years not having ANY UC symptoms and I wasn’t on any meds and was eating what-ever I wanted to including pizza and other SCD forbidden foods. I didn’t have gas (any more than my friends), diarrhea nor any UC symptoms; no gut issues at all.

The diet never caused my flares; there was no building up of bad gut bacteria over the long haul rather a sudden trigger to my immune system. Flu, mono and food poisoning are 3 huge flares I had and none could be slightly touched with diet, supplements or naturals. It’s ike throwing a handful of sand on a house fire.

Now, I'll try this IBDAID diet and see if I can just weather through the next storm. I'm hopeful.

We’ll just see in 5-10 years where I am.

Thanks for your reading and attention and stay upbeat my friends.