Question about SCD for anyone on it.

I'm not on the SCD diet, but I know what it entails. It's a lot stricter than gluten-free, just so you know. So if more severe is better, then the SCD is 'better' than gluten-free. Here are some links for you:

The 'official' SCD website
Wikipedia article
WebMD article
Recipes
More recipes

The WebMD article takes a sceptical view of the diet, but the other links are neutral or in favour of the SCD.

Before you jump into the SCD, I'd just like to mention one other possibility: an elemental diet. This is where you take your 'food' in pre-digested form, either in the form of drinks or TPN. By pre-digested, I mean that all the major nutrients have been broken down into their simplest form, eg proteins into amino acids. The nutrients get absorbed in the upper part of your small bowel and bypass the rest of your intestines entirely. This gives your bowels a 'rest' from digesting food. The diet itself normally lasts from 4-8 weeks and has a success rate akin to steroids in getting the disease into remission. When you reintroduce solid foods you do so very slowly, one food at a time every 2-3 days.

At any rate, I'm in a similar boat to you when it comes to being out of luck with the meds, so I've agreed with my consultant to give the elemental diet a try. I figure if the elemental diet doesn't work, then the SCD diet won't either. That said, I'm considering reintroducing SCD-only foods to begin with - but that's a few months away.

The liquid diet is only a temporary thing. Me, I love food too, but for the time-being, thanks to a stricture which won't go away, I'm stuck on a liquid/very low residue diet anyway. From my point of view, I may as well go the whole hog and try the elemental diet. I do appreciate its utter grimness and am not looking forward to it, but if it spared my colon then it would be worth it. (At the moment I can't have the stricture surgically removed without also removing the whole colon.)

I agree with your doc that it's not a good idea to remove entire food groups wholesale. At any rate, as well as a gluten-free diet, you could also experiment with a dairy-free diet (not at the same time).

It's not easy diagnosing food intolerances, especially when it's not even certain you have them. Good luck with whatever diet you decide to try.

JavaJay have you ever tried doing a low residue diet? Its less restrictive as the others, but is a diet recommended for those flaring. I have followed this diet for years and modified it here and there depending on how my Crohns was behaving. But I have had alot of luck with it. You can google it and get some diet ideas. Just a thought! Hugs!

JavaJay, I have not done the SCD, but I did adopt a gluten free diet last year and it was a life-changer for me. I'm sorry your GI is not on board with this plan, but I think his opinion is just that - his opinion. There's nothing wrong with trying something out. You can report back to him (and us) how it worked out for you.

My GI happened to be very supportive of trying a gluten free diet, but my rheumatologist poo-pooed the whole thing. The rheumy did a bunch of bloodwork on me 5 years ago and declared that I was not sensitive to gluten. How surprised he was when I reported at my last visit that my chronic knee pain had finally gone away, about 6 months into a gluten free diet. Going gluten free was intimidating to me, and I'm sure as a chef it will be a challenge to you too. I'm not a chef (but I do prepare a lot of meals for my family) and I was mostly worried about how much more work it was going to be to include this in my meal planning. It hasn't been that bad, although it hasn't been a breeze either.

One thing about gluten intolerance, at least as I see it now, is that I don't have celiac disease and like lactose intolerance, it is not a clear cut zero-sum game. I CAN tolerate a bit of gluten. I've taken bites here and there without any problem. But I do get a clear signal from my belly (usually a day or two after the fact) when I have overstepped.

It may be worthwhile to give a gluten-free diet a good test (3 weeks?). SCD is more restrictive than that and you can always increase restrictions if you want. A scientific approach to a limited diet seems to make the most sense to me. Don't change too many things all at once.

Thank you everyone for your responses. I did some internet searching over the past couple of hours. Although the low residue diet is probably to most logical thing to do I am probably going to ease into a gluten free diet for now. SCD is way to restrictive for me at this moment. Breakfast will be a challenge for me but I think I can do a gluten free diet without to many problems. Now I just have to go shopping for a whole bunch of items :)

I've been working with a naturopath and over the summer went through an elimination diet. I found it a great way to reset my eating habits. I limit my gluten now, but have it maybe once a week or so, and have eliminated dairy. One of the great things I've learned is to appreciate a whole bunch of new food. I really like quinoa and kasha, and have found it to be easy on my stomach. I also expanded a lot of the veggies I eat. Might help to think of it as an opportunity to explore new things instead of excluding gluten.

There are a couple of books by Frank Lipman, one called Spent in particular, that guide you week by week through an elimination diet. There's lots of suggestions and some food recipes.

Good luck!