Community Forum

I've been in a flair for the past year and a half and my doctors have done almost nothing to help me other than stick a bunch of cameras in my ass and feed me steroids that caused many family issues as a result of their side effects. In the last month I've started the Specific Carbohydrate Diet (SCD) and have had more improvement than I've had in the last 1.5 years on meds and following the dietary restrictions that my doctors recommended (i.e. no milk and low fiber). SCD is comparable to GAPS and PALEO diets as far as the food groups you can eat.

If you don't know what SCD is, then I suggest you google it to find out. There is a lot to learn regarding this diet and you have to ease yourself into it. Basically the diet is no complex carbohydrates and no complex sugars, or no grains and no sugars. You can pretty much only eat meat, vegetables, nuts, homemade yogurt, and honey. There is a multitude of guidelines to go with all the foods you can eat as well like skinning vegetables in the beginning of the diet, etc.

I wanted to start a topic for this diet since I haven't seen much about it on these forums but I also want to hear your opinions on the success or failure on this diet. As I said I have had a lot of success so far on this diet but I have also read a lot of conflicting information on the internet about other diets that include eating no meat or only eating meat once a week. Does anyone have experience trying other diets like SCD? What works best for you?

Reply posted for FatBow303.

I should add, I just received my comprehensive blood test results back. My results are excellent in every category. I do take supplements (fish oil etc) but other than that I just do the SCD diet to a T. I hope my results can somehow help others feel confident to try the diet and not have to take the biological meds

Reply posted for benthehood.

I was diagnosed with UC 14 months ago. I have done the SCD diet religiously with zero "cheating". I have been symptom free and drug free for 12 months. The diet has changed my life, I strongly encourage people to try it.

Reply posted for kristine12.

Hi Ik it's been 3 years since u posted this but I'm in the same positition (doc want me to try humira), wondering if the scd helped you.

Reply posted for benthehood.

Even though I have had multi GI docs tell me diet doesn't effect things. I disagree with them due to my personal results.

Being on an SCD I have been meds free for over 2 years. Had a routine colonoscopy 6 months ago showed I was in complete remission even to the cellular level. (Never has happen since I was diagnosed 12 years ago)

Well after hearing that good news, I slacked on following SCD. 6 months later I am having a flare up. My doctor doesn't think my diet or lack of following SCD has anything to do with it. Maybe, maybe not.  But all I know is l felt the best I have felt in a long time following SCD and got to the point to not be on any meds for a long time but after the last 6 months of not following it I am back on meds and in a flare.

Everyone is different. My experience is when I strictly follow SCD I have been able to cut back my meds and have slowly wen myself off them completely for years. Your doctor might not like cutting back on meds but to me it's worth the risk of seeing how I do then keep taking meds if I am able to maintain with my lifestyle and diet alone. I know this might not work for everyone and you have to decided by how things are going at the moment and keep tabs on your symptoms. I know I'll be back to SCD and meds for awhile until we get things under control and to the point that I feel like trying to back off my meds again. Doctors don't know everything about this disease. Doctors not that long ago they were treating celiac disease with a "banana diet" because they hadn't linked gluten to the disease yet. You have to be proactive and do what's right for you and what helps even if sometimes the medical community isn't always on the same page.

Reply posted for benthehood.

Cool to hear that SCD has worked so well for you. I followed it about 90% of the time, having a little cheat here or there on a weekend night for example. Was also on Remicade throughout so I thought I was bullet proof, but during an exceptionally stressful time in life I had an intense flare up start that spiraled out of control quickly. Tried to use SCD and the GAPS diet to help (GAPS is very similar) but things seemed too far gone at that point. Had to have some serious surgeries to get things under control. 

Since then I've started a youTube channel to help other folks use diet and nutrition to manage IBD. Essentially following SCD principals. I try to keep it comedic and simple so folks new to cooking and nutrition are not intimidated. You can check out an example where I teach folk to make cauliflower fried rice. Swap out rice for cauliflower, and swap out soy sauce for cococnut amnios. 

https://www.youtube.com/watch?v=1iIRL7pVqjE

Are you still strictly SCD or has the diet evolved at all? 

Reply posted for benthehood.

I am diagnosed with Crohn's for approx 12 years now and have been well managed with Asacol and now Imuran. I have been having some issues and the Dr's are wanting to jump to remicade or humira. I am not a fan of either of these routes. I have been looking into the SCD diet as well as Low FODMAP and Auto Immune Paleo before proceeding with these. Do you have experience with either low FODMAP or AIP?

 Reply posted for benthehood.

I was eating a bowl of cheerios and milk every-moring during my healthiest most recent period.  Cheerios has a lot of fiber.  For me, personally, I think having this fiber helps bulk up the stool enough that it keeps me regular, which is idea behind eating fiber, right?  I find when I'm healthiest, I have one big BM in the morning, then no urge all day.  It's great compared to flares, for sure.  And I'm experimenting now with MORE fiber to see if I can get that regularity back.

The frustrating part is that this is all just experimentation, and I even though I'm still eating cheerios everyday, I'm in a minor flare right now, so, does it even matter?  Hard to tell, really frustrating.

Alcohol has been the biggest most obvious trigger for me.

Also stress and sleep (less stress, more sleep) also seem to affect me more than diet.

 Reply posted for tadds.

Wow, no edit button on this forum, should have proof-read a little better.  Let's try again:

I have also linked beer/alcohol to flares, I have UC.  When I'm flaring, alcohol actually tastes bad, like poison, an acrid, acidic taste.  I can swallow it, but my body is actively rejecting it.  Obviously for good reason.  Interestingly, when I'm in remission, the beer goes down fine, and tastes great.  It's important to listen to your body.

 Reply posted for astinchecum.

I have also linked beer/alchol to flares, I have UC.  When I'm flaring, alcohol actually tastes and, like poisong.  I can swallow it, but my body is actively rejecting it.  Obviously for good reason.  Interestingly, when I'm in remission, the beer goes down fine, and tastes great.  It's important to listen to your body.

 Reply posted for astinchecum.

Well I just recently changed medical groups so that I could have access to more GI doctors. I've been only able to see the same one doctor and he wasn't willing to try anything beyond 20mg prednisone and mesalamine. So now I have to wait probably a couple more months just to get my next appointment with a GI doc. The reality is I've been getting dicked around for a year and a half now by my doctors because they are very incompetent and I had been putting my faith in them and just waiting around for results. So right now I'm looking into diet plans and vitamin deficiencies that could be attributing to my symptoms. And I am my own personal nutritionist lol. Not that I am qualified, I just have no choice. I can't work because of my symptoms so I spend a large amount of time researching diet and nutrition.

 Reply posted for astinchecum.

I've been worried about getting enough nutrients on SCD also. I've been sort of loosening up on the diet this last week in certain ways. Like, I feel I need more fruit than the diet allows and taking some vitamins that have "illegal" ingredients. I feel the nutrition and vitamins are doing more for me than the restrictive diet. I'm also experimenting with more fiber in my foods, I think it helps since I'm not bleeding at all I just have constant urgent bathroom trips.

I would suggest with the yogurt that you re-evaluate your yogurt making process. If you're using a regular yogurt maker, you're doing it wrong. You need to put a dimmer switch on it or use a crock pot/dimmer or food dehydrator. Pretty much every yogurt maker on the market gets way too hot. They're designed for 4 hour yogurt not 24. You have to get scientific with it and keep the temp below 110 and above 100 through the entire 24 hours. 

To respond to your question more directly, I have not experimented with other, named, diets.  

Except when in the midst of a severe flare-up, I do not find eating a low-fiber diet particularly helpful. I have always been unable to eat hot foods: pepper, chilies, hot mustard. More than a few sips of beer or wine makes me ill, so I have avoided these things since I was first diagnosed with Crohn's.  In order to raise my hemoglobin (I am often anemic, or borderline anemic), starting about a year ago until a month ago, I have been eating grass-fed beef 3 times a week, and/or clams (very high in iron).  Ground beef agrees with me very well, and I was able to raise my hemoglobin into the normal range.  A number of physicians have warned me not to become a vegetarian, as protein and iron intake (at least) would become a problem.

Do you have a physician or nutritionist/dietion who is following you?

I was diagnosed with CD in 1979, and have managed since then without medication, by adjusting my diet (in 2 most severe flare-ups, mainly plain grilled fish, rice, cooked spinach, and oatmeal. MREs have shown no progression in my disease in the past 3 years, but for 6 or 8 months I have been experiencing frequent abdominal pain, often when I first get up in the morning, when stressed, and often after breakfast.  In addition, I have had terrible bouts of gas and occasional diarrhea.  I believe I may have SIBO (small intestinal bacterial overgrowth), but have not been able to find a gastroenterologist who is interested in testing and treating it (as opposed to my Crohn's). I have been urged to take a course rifaximin, which I understand can have dire side effects. I am also being urged to begin treatment  for my apparently inactive Crohn's with the biologic, Entyvio.  

I would like to work with my diet to relieve the immediate symptoms first , and possibly begin Entyvio infusions in the fall. I began the SCD diet about 5 weeks ago. Until two days ago, I was eating very high quality plain non-fat yogurt for breakfast every day.  I decided to stop it (and other SCD-permitted dairy products) for a week or two. I have not had my typical abdominal pain in the past two days.  Obviously too soon to draw conclusions. I do not have a doctor to supervise me, and am becoming concerned about insufficient nutrition on the SCD diet.  I am sensitive to all types of calcium supplements and calcium-enriched juices and plant-based "milks." I will be going to Scotland for several weeks in June, and feel I must withdraw from the diet--at least for grains before I leave the US. I think it's probably not possible to survive there without eating wheat (bread) and oats, at least.

I am hoping to start a conversation about managing symptoms without antibiotics.