Specific Carbohydrate Diet

Diagnosed UC 2008

Multiple flares

C-Diff infection 2010

Currently in flare - on 40mg Pred, 3200mg Asacal, 2xprobiotic daily

Been flaring for a couple of months now. Prednisone has decreased my symptoms greatly (down to 3 BM a day) but I'm still showing blood. I had a colonoscopy last week to check on things and biopsy results came back infection negative but still inflammation. Doc wants me to start on 6-MP immediately.

Obviously I am ready to do what it takes to get better, including changing up my diet, etc. I have been reading about this Specific Carbohydrate Diet lately. I apologize if this diet has been discussed ad nauseum. I was relatively optimistic and wanted to give it a go...afterall, what do i have to lose at this point?

I called my doctor to get her opinion on it. As always, I am filtered by the nurse so I just left a message. The nurse calls back and says the doctor says she does not recommend I start this diet but no explanation was given. In fact, the nurse had never heard of the diet, which i thought was odd since she is the head nurse for this multi-doctor digestive disease center. Waiting to get some phone time with the doctor to get her specific concerns. But this is where I stand currently.

Anyway, I am just curious to know if any of you have tried the diet and if so, what have your results been like? Also, have any of you been informed by your doctor not to go on the diet? The diet is fairly restrictive but the types of things I'd be cutting out are not good for me in general, so I am a little confused by the order not to go on the diet.

Just looking for information. Thanks and down with UC.

well. i am having success with it. I am keeping under control both my UC and my Ankylosing Spondilitys through diet.

i am not going by the book, but far more strict and keep a food journal to check for food reactions daily. If i cheat, i pay.

i am doing it for one and a half year and the results (i mean the normality of my life came back) appeared mostly after 1 year.

good luck if you will try it. it's a hard trip, requires a lot of patience. Two steps forward, one step back... this is how it goes, at least in the first stages.

I am not surprised your doctor refused it, the medical community lives and breathes Rx meds (GI doc) or surgery (surgeon) and there is no open-mindedness about diet or other treatments (see other threads on LDN, nicotine, probiotics, other supplements).

I am in remission now due to a personal version of SCD because Rx meds never gave me any improvement and I took them for 10 years in good faith. Diet may or may not help you but it certainly won't hurt for you to try.

Please do a search on this forum for SCD and then read every thread to get a good idea of how people are using it. It is not an overnight miracle and it takes some work to see results. It took me a couple tries over the years to see that not every SCD "legal" food was OK with my gut. Maybe it's just extra cranky I dunno. But I have my life back and am able to have foods now that weren't possible 6 months ago.

Start by keeping a food journal/diary and be your own detective. Everyone's gut is different. SCD is a really good place to start but listen your your gut and it will tell you what is good or bad. Some foods aren't easy to identify as bad in the beginning because they take a day or 2 to act up.

If you get a little better-celebrate. If you don't-don't blame yourself-try something else.

Good luck.

Tried the SCD for a year, and it never really got me together. I'm doing a modified version now that only excludes wheat, dairy, potatoes and sugar. Sugar has definitely been identified as a major problem causer for me.

The SCD really is hit or miss, and if you're going to do it, you gotta be religious about it to make sure you're eliminating any possibility of it not functioning. That, and you have to give it a lot, a lot of time. It is NOT EASY to do, and that's likely why your doc said not to try it. You can basically forget about eating anywhere out of the house, because you simply can't trust what restaurants put in their foods even if they are 'legal' on the surface. Sugar is in everything in this country, in one form or another. The one type of food I found I could consistently eat was actually Mexican food, just without the beans, rice and tortillas. It's essentially just meat and veggies at that point, and Mexican restaurants, even the cheap ones, don't put sugar additives in everything like so many American or Chinese ones.

Alongside everyone else here though, I would absolutely tell you to give it a shot, simply because you have very little to lose and a lot to gain if it works. Give it at least a good, strict three months and see if you have any progress.

Be careful with the first few weeks though, because there can be an initial die off of bacteria that causes a serious Herx reaction. I had one when I first started that sent me to the hospital. While in the hospital I had an ultra massive BM that was nearly black in color, with a really strong green tint. I found out later that is a sign of dead bacteria. While the SCD definitely changed my gut microbiology, it never lifted me out of the constant flare I've been in since 2006.

Hello,

I too have just recently started my version of the scd diet.  I bought the book, Breaking the Vicious Cycle and read bits and pieces and some of it really made alot of sense.  I had a colonoscopy 2 weeks ago and I had quite a bit of inflammation and I had been in a flare since February.  I had been doing rectal meds when I can, not regularly though, and taking Asacol and that's about it, but I just couldn't get things back on track.  So, I started a very low carb diet and eat alot of tuna fish and not much bread if any and I am sooooooooooooo much better.  I don't have daily stomach aches and the urgency is practically gone, it feels so good to feel good.  I know that sounds funny, but it's true.   I also eat greek yogurt daily and even have had frozen yogurt for a treat and I'm doing wonderful.  Carbs were often a prob. for me, I just never put much thought into diet changes since my Dr. never suggested it.  As a matter of fact after my scope he called in a script for Pred and wants me to consider Remicade.  I say, forget thost crappy meds, I'm feeling like 80% better than I did 2 weeks ago.  And I just take Asacol now, I haven't done rectal meds since before the scope.  The Dr's. frustrate me so much, they just push those meds that I swear they get mondy from the pharmaceuticals because they really don't want to heal us cause then they don't make any money off us.  Geez... makes me so mad!  I'm looking for a new Dr. now that will actually talk with me about "healing" my sick colon.  I know there are people out there that support the book and the SCD diet and say it saved their life and they are symptom/disease free so I feel it's def. worth it fo you to try it.  What do you have to lose?  The meds will always be there as an option.  Good luck to you.. 

UC hater - I am in the same boat and was going to post a similar note. Doc wants me on 6MP bc I am on my third round of prednisone in a year. It scares me to take something that strong but I need relief. Going to try SCD but am worried about how strut it is. Sounds like many people are able to tweak the diet with some trial and error, we'll see how it goes. Keep in touch with your progress?

I've been on SCD for four or five months and my doctors/nurses are all stunned at how well I've recovered. It was hard to start only because it's such a change from the typical American diet. After a few months however it's second nature and comes as natural as anything else. Most people who fail on the diet do so because they ignored the first week. The first week is critical and involves eating pretty much nothing but broth in order to starve out all the bad bacteria. Also, I do cheat occasionally, for example when I go to a restaurant with friends I'll order the most SCD legal salad or steak I can find on the menu.

Doctors have to tell you they wouldn't recommend it. There has been no full-scale study done into the role of dietary changes and UC (there's one ongoing in Maryland but it's not finished). So for insurance reasons they can't say, "Yeah it works great!" Because then some jerk is going to try it, it won't work, and then they sue the doctor. And of course doctors in general love the pharmaceutical companies.

At it's core it makes perfect sense though. The book, Breaking the Vicious Cycle, goes into detail about the chemical reactions caused by bacterial overgrowth and how that contributes to a damaging immuno-response. I mean, in your digestive tract there's only one constantly changing variable and that's the food you put into it. Seems kinda obvious...

Sites I frequent include SCDLifestyle, ComfyTummy and iHaveUC. Really good info at all three places.

someone said:
Most people who fail on the diet do so because they ignored the first week. The first week is critical and involves eating pretty much nothing but broth in order to starve out all the bad bacteria.

My failure with SCD the first time wasn't due to this. I am a real rule-abider. I believe my failure was because even when certain foods were legal for me to eat those foods were not liked by my gut. Yogurt especially and really most/all cheeses. I got really good at making SCD yogurt and loved it but I have absolutely come to the conclusion that it's not good for my digestive system, gives me D. And hard cheese gives me C.

Fruit and juice was also a problem for me in my first failure. The second time, years later, when I succeeded with SCD I eliminated fruit, juice and all dairy because they were causing issues. After a year in remission I can now eat some fruit and some juice but not dairy, not yet. Beans are still iffy with me too.

SCD is the core of my diet, I just don't eat all the legal SCD food but don't add any illegal either except VSL#3.

someone else said:
I would recommend you look into GAPS instead, which is based on SCD

I did that too but again the yogurt and fruit was no-go with me. I also tried sauerkraut, nope.
GAPS is a healthy diet though like SCD and everyone should try it on for size and see if it fits them.

Well there are a lot of spin-off books ala SCD but I wouldn't say this is spam right off the bat.

What the poster is saying is true, doctors have no studies or background to give them confidence in diet modification, that is not what medical school trains them for, which is how to diagnose and treat using pharmaceutical drugs for UC or surgery if it comes to that.

Sadly no GI ever wanted to look at the book and I did bring it. Every time I tell my current GI how well I'm doing because of diet mod. she looks amused but not interested. I know she will never suggest it to any other patient.

I am always confused when I read about SCD. It seems self-contradictory to me, perhaps someone here can clear it up:

1) The diet asks you to avoid sugars - the artificial kind, sucrose, and fructose. But then goes on to say that all fruits are allowed. Aren't fruits packed full of fructose. Not only is fructose dense in carbohydrates, but fructose malabsorption can cause cramps and diarrhea

2) The diet wants to avoid foods that are not easily digested due to their carb content (grains and cereals). But it allows legumes, beans, and lentils - which are known to contain certain carbohydrates that are not well digested by humans.

Please excuse my ignorance here if I have missed some key details. I am actually very keen on aiding my treatment with diet!

dAetomeN said...
I am always confused when I read about SCD. It seems self-contradictory to me, perhaps someone here can clear it up:

1) The diet asks you to avoid sugars - the artificial kind, sucrose, and fructose. But then goes on to say that all fruits are allowed. Aren't fruits packed full of fructose. Not only is fructose dense in carbohydrates, but fructose malabsorption can cause cramps and diarrhea

2) The diet wants to avoid foods that are not easily digested due to their carb content (grains and cereals). But it allows legumes, beans, and lentils - which are known to contain certain carbohydrates that are not well digested by humans.

Please excuse my ignorance here if I have missed some key details. I am actually very keen on aiding my treatment with diet!

The diet asks you to avoid certain sugars not all sugars, thus SPECIFIC carbohydrate diet. Not all fruits are allowed either. Fructose is allowed although you are right about fructose malabsorption/intolerance being a potential problem. One of my criticisms of the diet is that this is not emphasized enough. I suffered for 9 months on the diet before I discovered I had a fructose intolerance problem.

Most legumes are NOT allowed on the SCD. Those that are allowed are only recommended once your gut has healed more and must be prepared a certain way (i.e., soaking).

I had off today. Ate 6 eggs with toast, 1 hoagie , 2 donuts, 6 cookies, and some coffee. I think for dinner i am going to have Pizza. Needless to say no carb diet
I can be such a pig when i want to.

Is there any need to be rude? Don't you think I would LOVE to eat a donut? or a cookie? or pizza? I miss those foods but for my health's sake I know I can't. Do you also walk into an AA meeting with a drink in your hand and say Wow this margarita is delicious!

Your last sentence I can agree with. If you meant to be funny you failed.

Dsm4life said...
I had off today. Ate 6 eggs with toast, 1 hoagie , 2 donuts, 6 cookies, and some coffee. I think for dinner i am going to have Pizza. Needless to say no carb diet
I can be such a pig when i want to.

i am happy for you. anything else you want to share?