My question is for people on the SCD diet who find that it's working.

How long after you cheat by eating the wrong thing do you start getting symptoms?

For me, I can have a blip or two and only experience minor changes, but if I cheat several days in a row I start to get symptoms.

How about you?

Window for cheating changed over time. In the beginning after being strictly on the diet and symptom-free for a while, could cheat a month after which symptoms return. That window narrowed over time. Now it's only a couple of days and I also need mesalamine to maintain remission.

so the question is, would complete abstinence from questionable foods for say 2 years, allow the colon to completely heal and reset so that those offending foods never be an issue again ??

me, i'm a cheater - i admit it - do i have to be ? nope ! but i do - even tho flares that eventually happen as the result are indeed flares and suck, i still cheat - WHY ????? cuz i love my gluten free pizza (crust made with rice) and spinach tamale/enchilada (corn) - my current schedule is one other the other once/month - i keep tweaking it, and lengthening the time span but again, if i just said no, would the long term benefits be worth it ?

Coming out of my first hospital discharge I was on prednisone/remicade and never strictly adapted to any particular diet besides avoiding alcohol and dairy. Remission was slow if not unsuccessful because I'd be up and down flaring every other week.
After my most recent discharge I was on prednisone again but tried the SCD diet with successful results only 2-3 days in. Since being in remission, I have tweaked my diet to be more Paleo in principle. When I veer off the path by eating gluten/sugar/overeat for more than 2 days, symptoms slowly return. If I'm under slept and stressed I can flare up within 1 week.

Cell regeneration in the colon is possible when the mitochondria are given the nutrients they need, but I suspect you could never go back to binge eating your trigger foods without causing acidosis/inflammation again. Moderation is key they say, but would that apply to a Celiac patient or someone with genetic vulnerabilities?

I've been on SCD for the past 15 years (mostly drug free thanks to it, VSL 3 probiotic is only thing outside of SCD that I take).

When I'm in complete solid remission for a while (at least 6 months), I can tolerate rice/rice noodles in reasonable quantities for periods of months at a time with no flare up. I used to also have ocassional dessert on and off during years of solid remission.

When I'm in a flare, I have to be super strict and cannot cheat. When I have minor symptoms of a flare, one small cheat or eating out will trigger symptoms and then I have to go back to being strict and it resolves within a few days.

I never really know what causes a flare to begin with. IBD is in my family. The flare I had 12 years ago was triggered by a long run, and I read later that this can be a problem with people with UC.

Sorry, I meant when I have minor symptoms (not minor symptoms of a flare) in that even when in remission, ocassionally i'll get mucous, mild abdominal pain with no bleeding or D (one BM) and it will resolve in 1-3 days. Some docs think I have IBS as well but to me there are just some symptoms from UC while in remission that maybe others get. This can happen randomly if I eat something off the diet or if I get a cold/virus or stress. All I know is that I was in remission for 12 years on SCD and very ocassional use of asacol at a non-therapeutic dose of 800mg here and there for a couple days when i'd have a little mucous etc (my colonoscopies and blood/stool tests were all normal without inflammation after being diagnosed with moderate inflammation many years ago), so I have some data backing up that I was in remission for those 12 years until Jan 2017.

As of last month, I'm in a flare, but it's very minor compared to when I was first diagnosed and subsequent flare. * I should add that I was not strict on SCD before this flare since I was feeling good for a long time aside from very severe GERD. I was following it 85-90% because I wasn't always strict when eating out.

Ok, thanks for the reply. It always make me wonder whether I really have 'UC' per se even though I get all of the symptoms of it. Because in my case I basically never get any symptoms or any flare if I stay strict on SCD. In my case, food literally is the cause of any symptoms or flare and I wonder if I in fact only have some weird food allergies.

That is good to know that 75% of folks do respond to medication! Long-term remission rates are important though and i've seen mixed data on those, although they are still higher than placebo.

In the small sample size they used for the AID Diet at UMass (N=11), 100% of the participants had a reduction in symptoms while on meds, but there was no control group. This diet is pretty similar to SCD but less restrictive.

Conclusion: This case series indicates the potential for the IBD-AID to be used as an adjunctive or alternative therapy for the treatment of IBD. Notably, 9 out of 11 patients were able to be managed without anti-TNF therapy, and 100% of the patients had their symptoms reduced.

http://www.umassmed.edu/nutrition/ibd/ibd-aid-research/

@Jane,

Can you explain how IBD-AID is different from SCD. The only difference I could find was that IBD AID allows oats. What are the other differences?

As an aside, I am always surprised at how people can be so sure about their symptoms in relation to SCD. I could never find a correlation between stopping SCD and symptoms...sometimes some disease activity would return, sometimes not. Right now, I am really not following it at all and I feel fine. I don't know what to make of it at all. I'm hoping CCFA can provide some insight when they finish their SCD/Crohn's study. Not that we will be able to draw too many conclusions from that in relation to UC.

I tried the oats from AID, it was terrible for me. Cannot take any grains. I may go look into finding a good food allergy person, I just wonder if I really have UC

soynomore, how long have you been medication free?

Nice--you should definitely celebrate your 5 year Anniversary!

Jane974 said...
I've been on SCD for the past 15 years (mostly drug free thanks to it, VSL 3 probiotic is only thing outside of SCD that I take).

When I'm in complete solid remission for a while (at least 6 months), I can tolerate rice/rice noodles in reasonable quantities for periods of months at a time with no flare up. I used to also have ocassional dessert on and off during years of solid remission.

When I'm in a flare, I have to be super strict and cannot cheat. When I have minor symptoms of a flare, one small cheat or eating out will trigger symptoms and then I have to go back to being strict and it resolves within a few days.

Hi Jane, thanks for your post...so your able to get out of a flare strictly with diet? I am following the GAPS diet....I did it before for years....it took quite a few months of constant broth and well cooked veggies to get out of my flare - wth no meds except for delzicol. I lost 30 lbs. Then a lot happened, got very/too busy, and went off diet and have been in flare ups since. Maybe with my second time around doing Gaps (which I know is very close to SCD), I am al little all over the place...interchanging steps on the intro diet. Like I've been on prednisone....last few weeks eating a regime of broth and veggies, a juice every morning, and salad (which is iffy). I was doing well getting off prednisone 3 weeks ago, also taking Istasis Cooling and seemed to be incredibly healthy until major relapse Saturday....massive amounts of diarrhea - so much I needed to be hospitalized for several hours with IV fluids.

That was a lot...my main question is how long does it take for the SCD diet to work for you? Have you ever had to take heavy UC meds before? AND, one last question....do you take VSL probiotic all the time? I have not been taking that. Its so expensive ($110?) and I want to save for exactly the right time to take but maybe now is that time.