Crohn's Disease Forum » Diet, Fitness, and Supplements » SCD and Paleo Diets » The specific carbohydrate diet seems kinda scary


09-29-2009, 11:24 AM   #1
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
The specific carbohydrate diet seems kinda scary

I know a few of you have been trying the SCD and its testimonials seem wonderful for crohns, uc, and other IBS symptoms. I am interested in it, but it seems counterintuitive to everything I have learned up until now.

It advises you to eat lots of fruits, vegetables, nuts and seeds, normally I'd think these are the healthiest foods to eat but with crohns they make you bleed, and tear up if you are flaring. So how can this diet be good for crohns although it was designed for us and supposedly helps us?
09-29-2009, 11:53 AM   #2
imisspopcorn
Punctuation Impaired
 
imisspopcorn's Avatar
 
Join Date: Aug 2009

My Support Groups:
No clue here???Sorry.
__________________
~*~*~*~*~*~*~*~*~*
Instead of hiding in the darkness of a grey cloud, why not look for the silver lining?
09-29-2009, 04:02 PM   #3
shazamataz
Senior Member
 
shazamataz's Avatar
 
Join Date: Aug 2009
What Shantel said

Also I think when you start on it you begin with very basic stuff (not the nuts and such) and gradually add in while things settle down. The lady also says that there may still be things which irritate you that may be okay for someone else.

I have read the book and have a friend on it who was diagnosed 7 years ago and, apart from Pred when she was diagnosed, has been on no meds since then, had no surgeries or anything. She seems pretty well. She doesnt work but has three kids so that may be why. She is rigid with the diet and adamant it is the only solution.

Thus I feel bad around her sometimes as the SCD seems so overwhelmingly hard!

I have incirporated some aspects of it like significantly cutting back the carbs/sugar, but because I have been on low residue if I had done it completely I'd have nothing left to eat!! I also have a nut allergy which is hard as nuts are a big part of SCD.

My reckoning is that anything 'bad' that you cut out is going to be helpful. Sugar especially. This also fits in with somebrief reading I did on inflammatory/anti-inflammatory foods. Sugar being the biggest baddie! Perhaps have a wee look into that idea?
__________________
Farting is FUN
09-29-2009, 05:56 PM   #4
NatalieMT
Senior Member
 
Join Date: Dec 2008
I have had more success with the Lofflex diet, I was given a book about it after finishing the Elemental diet for the first time. If anyone is interested in learning more I can post up what the book details.

I believe basically it stands for low fat, fibre limited, exclusion diet. It's what I revert to when I'm not on Elemental or having a feeding tube threatened on me!

Last edited by NatalieMT; 09-29-2009 at 05:59 PM.
09-29-2009, 09:08 PM   #5
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Shantel and shaz I read the book but it's so confusing lol, why does something healthy like algae have bad bacteria? that stuff is in health food stores! I keep hearing testimonials like the one from your friend shaz, but it's such a hard diet to follow, I am probably going to be like you and try to adhere as much as possible.


Natalie I'd love to know what book that is or any links you can provide.
09-30-2009, 06:35 AM   #6
NatalieMT
Senior Member
 
Join Date: Dec 2008
The Lofflex book is very specific, it has a list of foods that are 'not allowed' and 'allowed'. I believe the list aims to exclude all the foods which are most likely to cause an intolerance or reaction in those with impaired GI tracts. It is recommended the diet is followed for 2-4 weeks and that meals should be smaller and consumed more slowly. You can take enteral feeds as a supplement to the diet also, so for example I have the Elemental cartons and Modulen. But they are not necessary if you are able to eat well.

I have attached scans of the book below with said lists and a sample menu. They say you should write your own daily menu and any symptoms experienced after eating a particular food.

http://img.photobucket.com/albums/v1...fflexPage1.jpg

http://img.photobucket.com/albums/v1...fflexPage2.jpg

Re-introduction of the not allowed list is a lengthy process and after 2-4 weeks on the diet if the Crohn's symptoms have improved you should start eating new things. They advise picking one item from the not allowed and testing it for minimum 4 days at a time. You should eat it in a large quantity twice a day and if symptoms do not worsen you can assume it is safe, continue to eat it and move onto the next food. If symptoms did worsen you can assume the food you tested was probably responsible and leave it out from that point onwards. Remember to keep a log! Any reaction may last 2/3 days and during that time you should stick to the allowed list until things settle and then try again reintroducing another item. Once you have finished reintroducing foods into your diet and decided what makes you better/worse the book says you should have your diet checked to make sure it is nutritionally adequate.

Personally it works for me and I don't find it too restrictive, you can eat a number of food items in every category including fruit and vegetables in limited amounts with no skin/seeds. I'm a vegetarian and so I even cut out the meat and still there are plenty of choices. I know the book was produced in the UK so if you haven't heard of any of the items I can explain them.

Last edited by NatalieMT; 10-06-2009 at 02:41 PM.
09-30-2009, 08:02 AM   #7
NatalieMT
Senior Member
 
Join Date: Dec 2008
Well yes and no, it is trying to identify foods which aggravate your system as it's an exclusion diet but the basis of it is more sensible in my eyes what with it being low fat and low fibre. We all can identify that different foods react differently when eaten by each and every one of us, so figuring out what agrees with me has been useful, it's a more structured trial and error. It's what both my dieticians have recommended to me and it has helped. But obviously it's not for everyone.

I don't buy the SCD diet myself, it reads as though it would be very healthy as lot of the food is totally unprocessed but I find certain aspects of it contradictory, mainly the dairy issue. It gets mixed reviews and although I'm sure some people have done well on it, it's hard to follow and there is little scientific evidence to show whether it's truly effective or the claims made can be backed up. I'm sure there is nothing saying don't give it a go and I'm sure a GI may not dissuade a patient but there is no established proof. However at the end of the day that can be said to varying degrees for a number of diets, including Lofflex.

Last edited by NatalieMT; 09-30-2009 at 08:12 AM.
09-30-2009, 08:27 AM   #8
NatalieMT
Senior Member
 
Join Date: Dec 2008
Yeah I think there needs to be some established research before we can say anything concrete about SCD, I find this article on the CCFA particularly interesting - http://www.ccfa.org/about/news/scd. Some paragraphs were were quite enlightening, I agree with the fact that SCD does change the intestinal flora but at the same time there may be less extreme ways of acheiving that result and that most people don't have to make drastic diet changes. But there isn't anything to say don't try it.

I have the same problem that foods can be unpredictable in setting me off so to speak, one day I will be fine eating a particular item and the next nuh uh! I think with Lofflex I was consistently okay with pretty much everything on the allowed list apart from pear. The idea definitely is to get you to a stable place with your diet and I would say yes if you encounter problems, starting from the beginning again would be the way to go. Which I did do recently when I came off pentasa and azathioprine in preparation for another colonoscopy and infliximab funding. My symptoms just got so bad and I wasn't prepared to eat anything let alone a wide range of items. I went back on Elemental and now recently I've just had potato and white fish once a day. I have dropped like 10 pounds but not a lot I can do about it for now.

There is a paragraph in my Lofflex book which says when reintroducing food 'If a reaction occurs it will usually last for 2 to 3 days, but may go on longer. During this time it is impossible to assess other foods accurately, therefore stick to foods already known to be safe or allowed. If symptoms are very severe, 2-3 days on E028 or Pepdite will usually settle them. Do not introduce new foods until you are well again'. It's a thick book but only a few pages are information and the rest is space to log symptoms!

Last edited by NatalieMT; 09-30-2009 at 03:42 PM.
09-30-2009, 02:39 PM   #9
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Natalie thanks so much for uploading those pictures of the text. It seems very reasonable and a great way to transition in a safe way back to normal foods again. What is the name of the lofflex diet book or is that it, and the author? i would like to purchase it, it seems like a worthwhile read.
09-30-2009, 03:49 PM   #10
NatalieMT
Senior Member
 
Join Date: Dec 2008
I think the article says for every one person that tries SCD and finds it to be successful there are three or four people who don't get good results. It can go either way, I wouldn't discourage anyone from trying the diet because if you don't try you'll never know but I'd certainly enter into it with caution.

The book is just called Lofflex Low Fat/Fibre Limited Exclusion Diet for Crohn's. There is no particular author but it was developed by The Department of Gastroenterology, Addenbrookes NHS Trust, Cambridge UK. I believe it was a Prof John Hunter who set it up officially. It then also says the book itself is produced with the support of an educational grant from SHS International Ltd (the people who make Elemental etc). I was sent the book by my dietician, not sure if it's available for purchase and it really doesn't have a lot of detailed information apart from what I posted.
10-03-2009, 03:17 AM   #11
Naps22
 
That article on ccfa is laughable. How can they come out and ridicule the SCD diet for not having enough "published studies behind it". And then come back and say "for every 1 person that finds it successful, 3 or 4 don't get good results". Based on what? You just said there wasn't any established research behind it so how can you make such an erroneous claim about the diet? Yea, lets all take CCFA's advice and go out and eat pizza, ice cream and cheeseburgers and see where that will get us. I'm sorry, but I really hate that website.

I don't think the diet's success is that difficult to figure out. The main premise behind the diet is to go back to the foods that we EVOLVED on. So any type of grain, starch, dairy, along with any type of processed foods need to be excluded from the diet. As we have only been eating these foods for about 10,000 years. The diet is somewhat arbitrary, allowing certain foods like legumes that contain oligosaccharides which are a branched sugar (something that shouldn't be allowed on the SCD diet), which is why something like the paleo diet would make much more sense. Or possibly something along the lines of a paleo/SCD diet. Yes, these diets are hard and restrictive and tough to do but if people are willing to give put in the effort to be healthy then there shouldn't be a problem, and there sure as hell shouldn't be any doctors dissuading people from trying the diet, which there are. Nothing bad is going to happen by attempting to try out this diet except maybe you lose a little weight. Big deal, if it can help you get off medication and live a pain free life then it is most definitely worth it.

And if you're sitting here waiting for published clinical trials to come out on the SCD diet you're going to be waiting a long time.

Last edited by Naps22; 10-03-2009 at 03:23 AM.
10-04-2009, 09:59 AM   #12
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Well a lot of the diet seems counter-intuitive. Also, if the diets premise is starving out the bad bacteria, why not juse use high dose probiotics to do that instead? That way you can still enjoy a lot of foods that would otherwise be "illegal" on SCD.
10-04-2009, 03:25 PM   #13
shazamataz
Senior Member
 
shazamataz's Avatar
 
Join Date: Aug 2009
I hear you noguts! I have a friend who does SCD and sees that as the ONLY solution so whenever I see here that is all she thinks I need to do and it gets frustrating as I have information coming from all directions about what is best and it's hard to know what to do! I am on low res due to a stricture and so if I actually did the SCD there would be almost NOTHING I could eat!
What I have chosen to do is to take lots of probiotics and to cut down a lot of the starchy stuff without completely eliminating it. My insides feel pretty good, though I am on Pred as well. However I was expecting things to flare with the taper and they havenlt so perhaps my methods are doing the trick!
12-28-2009, 02:52 PM   #14
wqcoleman
 
a little intro, and then my question...

i'm in hell right now and have been for 11 months, since my first perirectal abscess that started in November 08 (i've had another one since then in may).. i've tried to abate this disease through humira, remicade, (tons of prednisone - been on this 11 years straight), immuran for 12 years (finally had a pancreatitis attack this year and went off the drug (thank god). the med list goes on....

i was living on pain meds (endocet) and cannabis hoping that my symptoms would improve with lots of rest coupled with the horrid drugs they were giving me..

I was hopeless, my wife was worried about opiate addiction (i was taking slightly more than prescribed - and opiates have reared their ugly head with me many years ago) and just the wackedoutness of smoking MJ (frankly, it works for eating, but other than that - not a bit of improvement in symptoms). She was watching her husband die and I had no idea what to do to get out of this.

I've stopped the cannabis - it makes no sense to me, even though it's nice to "drift away" every once and while, but that's a false sense of security and adds nothing to the improvement of symptoms.

I've scaled the opiate use from 9 endocets a day to 2 to 3 (today was 3 and yesterday was 2). I plan on stopping these SOON, but I can't get off the couch sometimes the pain is so bad, and frankly inhumane to live like that. Opiates are not a solution either, they slow motility and mask the pain, but they are so dangerous for everyone with acute pain - since the specter of addiction is very real.

I haven't had a solid bowel movement in 8 years, and that's the truth. I'm dying slowly and I have seemingly no way to stop the velocity of this disease.

7 times in the hospital this year... just a year I plan to try to forget

My doctor thinks that I should NOT be in pain. I would only wish he lived in my body for a day, and that my crohn's looks "good" from blood work and numerous colonoscopies and small bowel follow through, and the 7 CT scans that I glow from (radiation is real folks), constant tests of new spasm reliving meds from Bentyl to other crap that made me tired and even sicker in my opinion. His latest answer is that it's TIME to think about surgical options (ie. cut out stuff...). He has never ONCE engaged me on diet, which I feel is just aggregious and I just don't know better. WE NEED MORE DOCTOR ADVOCATES, not just drug pushers. I only wish I had this discussion with him in Jan this year... now I want nothing to do with him anymore.

Christmas -- I decided I was going to fight, and I'm going to man-up and deal with the realities of the new reality. I need to change.

We plan on ending this doctor relationship on Tuesday and I'm going to ask my doctor to go out of network to John's Hopkins or the Hoffman Center. If they don't do that, we will escalate indicating that they have done enough and it's time to allow me to see another specialist - one not specializing in giving me more drugs but on a more holistic approach, which has been just lacking on so many levels.

I started the SCA diet three days ago, I believe it's going to take far longer than a few weeks to feel better, but I'm sticking to it like it's my last hope. I will not sway from the directives in that book and online (illegal and legal lists). I am 125% committed to doing this diet as if I was back in Military school, I will do and NOT question. Desperation is a great motivator.

I'm making my own food, and here is my question - I LOVE MEAT!, so when looking at this diet, I was horrified but slightly encouraged, since I love eating red meat, chicken, turkey, it's a daily staple of mine. Honestly, the sugar is the hardest - since I have a taste for candy, love it - but can't have it.

Here is my plan:
  1. Chicken Soup (as described here - http://www.scdiet.org/4faq/starting.html) - I did it wrong on Saturday, will redo tomorrow. (used for lunch) - the broth gives me the runs, but I will persist
  2. Flank Steak Patties, lean - used for dinner
  3. Bacon - BURNT TO A CRISP - 2x a week
  4. One scrambled egg in the morning (I wonder if I should do this)
  5. Carrots (raw as a snack)
  6. Granny Smith Apple with the skin removed (still not great food for me)
  7. Going to make Jello tomorrow - based on online recipe

I need to learn how to cook more, but is this a good diet plan to have for the next month or so?

I would like to add some additional friendly food. I hate yogurt, so I'll pass on that. Not a big cheese fan - so I'm looking to other foods that fill those categories.

I'm worried that eating all that meat is not so good - but my current diet is probably a real reason why I feel so horrible. I'm at 181 lbs, I've lost 45lbs this year, down from 220 (which is good in a sense - but losing it in the fashion that I did, I would not recommend).

Thanks for your post, I'm holding out hope that this will improve things - and even if it doesn't, I will continue to fight and look for alternatives that work as well and are not drug focused.

I encourage all crohn's suffers to read her book, it will take you a morning to read through all 100 pages of narrative. SHE MAKES SENSE ... and when 80% of respondents claim improvement and lessening of symptoms I take notice (I'm a math major, so I love statistical info - however anecdotal it might be).

Thanks,

Will
12-28-2009, 03:34 PM   #15
DMS
Senior Member
 
DMS's Avatar
 
Join Date: Aug 2009
Location: Chilliwack, British Columbia
Hi Will,
It sounds like you've been through a really rough time.
What drugs are you on right now?
In my opinion your starting diet looks okay, the chicken broth soup is really good for you. Try to get your eggs from a place that sells free run or organic eggs, the omega 3's are much higher in those, if you're worried about cholesterol have a couple of eggs and add a few more egg whites. I would be careful with the bacon, actually I would eliminate all pork until you are feeling a bit better, pork is really hard to digest, it's got lots of impurities in it, bacon usually has some sugar, and sulfites in it. Grass fed beef is a great meat if you can handle red meat. I also find that Costco meat is really good quality (at least where I am).

The yogurt is really important, if you decide not to do it get on a good probiotic, you're trying to starve out the bad bacteria and replenish the good bacteria.
Good for you for being committed, who's doing the cooking? You or your wife?
I've got lots of good tips/tricks. My 16 year old son has crohns and a perirectal abscess, he has been on SCD since July 09. Doing really good on it, the food sometimes gets a bit boring but he goes on line and looks for more recipes for me to try. He really disliked the texture of almond flour so we make all his muffins and pancakes with coconut flour (scd legal from the health food store). It is fine like regular flour, but needs more eggs to bind it together as it has no gluten.

Low Dose Naltrexone works very well with SCD, if you are changing Dr's and off of other meds, maybe look into it, both SCD and LDN are slow going as far as seeing a change, but worth it if it works for you.
Good luck.
12-28-2009, 03:51 PM   #16
wqcoleman
 
thanks for the note DMS
  • I take 20mg of prednisone a day
  • I just had a loading dose of Humira 8 days ago, hasn't done a thing
I take a ton of vitamins and supplements
I'll get rid of the bacon for now, thanks for that. I do have a probiotic drink mix, called Inflam flex 360, but I have not taken it yet, since it had some no-no's on the list of ingredients. I'm hoping that the ortho biotic is helping get the right bacteria into the system.

As for LDN, I am taking the new tact of non-drug focused therapies, I would rather eat sawdust then take another drug in my system. I hear good things about it, but whenever we deal with opiate receptors, I get a little squeamish, but I will look into it, since at this point I will look into anything.

I do believe I have had a real awakening in the last week, that is, I truly feel that diet and food are the problem now, since NO drug has worked.. and I think I'm tired of perceived short-term solutions, which frankly is what most doctors push.. and I'm a sucker for short term, no longer.

And I'm cooking... My wife is not a cook -- so it's up to me.

Thanks,
01-01-2011, 06:41 AM   #17
Aussie Lea
 
Join Date: Oct 2010
Location: adelaide, South Australia, Australia

My Support Groups:
Her is my 5 cents bit - I religiously went on the SCD diet for about 5 weeks. In that time, (post the first week), i virtually had no Diarreah. My problem was I ate too many of the the bread/rolls as they were convenient and ended up a with a bit of a blockage (not constipation), and have temporarily ceased the diet (I have narrowing of the bowel due to surgery, so heaps of almond meal bread was not good for me). I do intend to take it up in a few weeks, as it really did help. Whilst on this diet I did not have to take the regular dose of Questran which has been the only other saviour for me in relation to otherwise constantly having the runs prior to trying the SCD. I am now into the 8-9 week of LDN and am feeling pretty good. I have been on a wheat free / dairy free diet for about 5 years now, and this has definitely helped.
__________________
---------------------------------------------------
2013 Flare Up Treatment
Humira
Entocort
Prednisolone
Vitamin B12 Injections
Cymbalta
Acupuncture

Previous Treatment:
April 2009
40mg Prednisolone - tapered over 6 months to 5mg
50mg Imuran
Questran
Vitamin B12 injections
Remicade 8 weekly infusions for 12 months 2009-2010

2011:
Started LDN 18/11/10 gradual increase from 1.5 - 4mg
Questran
Prednisolone 5mg
Vitamin B12 injections
Vitamin D

Diagnosed Crohn's in 1985
01-05-2011, 01:20 PM   #18
Jane
 
Join Date: Aug 2010
Location: Philadelphia, Pennsylvania

My Support Groups:
I started a SCD modified diet about 6 weeks ago. I started it because I felt I was in bad shape, getting worse and had nothing to lose. It seems to have helped. After being on it a few weeks my abdominal pain is gone and I haven't had days of extreme fatique.

By modified SCD I mean that I am trying to eat by the principles of the diet, but not stressing about eating that way all the time. For example, I'm not eating sugar, bread, rice, pasta or cereal in my house. But when I am out socially and my foodie friends want to try a famous pork sandwich place then I'll eat the pork sandwich with the roll and not worry about the sauce that was put on it. And I'll enjoy the delicious sandwich guilt free!

I do not make my own yogurt, but I do buy lactose free yogurt.

Elaine Gottschall and SCD followers would not approve of my approach to the diet, but it has helped keep me sane.

I am also on Entocort and 6mp, but I really believe the diet has helped me because I was on the Entocort and 6 mp for more than 3 months and was still having flares.

I don't understand the science behind the SCD diet, I dislike the way the Breaking the Vicious Cycle book is written, and I dislike the categorization of foods to a legal and illegal list. I don't understand why some foods are illegal.
I like Raman Prasad's SCD cookbook.

This approach to eating seems to have helped me. It hasn't cured me, but I feel better than I had in awhile.

In sum, it's worth a try.
01-07-2011, 12:31 AM   #19
fromthegut
Senior Member
 
Join Date: May 2009
i'm going through a rough time now. I jsut hate the thought of goign on the SCD. it is so tough. I did feel better but I was hungry a lot !! I felt better and started to get active and out.. and it was a ahrd diet to be on in my world. Also it ook an incredible amount of time. If onyl I could find others who eat well and healthy and were willing to accomadte my needs. really if i eat basic stuff like rice etc.. it is good. I have been eating way way too much sugar. Crap.. i think my iron might below and I jsut feel plain exhausted and I think sugar will help. But of coruse.. like alcohol it makes me depressed. I think that is why i stay away from alcohol.
01-07-2011, 02:32 PM   #20
Domsmom
Senior Member
 
Domsmom's Avatar
 
Join Date: Oct 2010
Location: Ontario

My Support Groups:
The SCD is my next line of approach if what I'm doing doesn't work. I think that it's based on low allergy potential foods which are easy to digest.
__________________
Bowel Resection May 2014

Current meds: None

Past meds:
Asacol
Pentasa
Prednisone
Imuran
Cipro
Flagyl
01-16-2011, 05:59 PM   #21
James04
New Member
 
Join Date: Sep 2010
I am glad i found this post. I am in the process of researching this and the No Starch Diet. They both are based on the premise of the bad bacteria thriving on starch and sugar. The NSD is big on an Ankylosing spondylitis forum that I have been lurking in. My rhumi thinks I have it and wants to put me on Humera.

So far I am refusing to go on Humera. It is very scary. So I promised myself I will give these two diets a fair shake before going down the Biologics path. I hate taking meds as it is and can't get myself to accept. That I have to continue poisoning myself with medications but not give up some foods that we all love. It will be hard but if it works....

I am wondering if Will was able to stick with this and how he is doing?

James
02-10-2011, 04:46 PM   #22
happytummy
New Member
 
happytummy's Avatar
 
Join Date: Feb 2011
I'd highly recommend going one step farther than SCD: try the Paleo diet.

Paleo is: lean meats, veggies, fruits and nuts only.

The diet makes sense because it's the way humans have been eating for hundreds of thousands of years; eat what agrees with us from an evolutionary perspective. If it didn't kill our ancestors then it's probably a safe bet for our bodies. Research how agriculture can be traced back thru the fossil records and when it was introduced (about 10,000 years ago) human skeletons show significant signs of bone density loss, auto immune diseases, teeth and gum issues and other signs of a decline in health across the board. Same thing happened with Native Americans when they introduced corn into their diets; all of this information is proven in the fossil records.

Then again, I'm no expert, but I've been tried SCD for a year with mixed results, and just 5 weeks on paleo and have already reversed all GERD and diarrhea symptoms. It's impressive; read the book by Robb Wolf and try this simple diet for yourself. I'll post more as I go, but so far it's been pretty amazing.

p.s. I've also completely stopped my 400mg of Asacol since trying SCD and Paleo and I feel better because of that too.
02-10-2011, 05:13 PM   #23
James04
New Member
 
Join Date: Sep 2010
Happy Tummy,

Were you on 400mg total or 400mg 3x/day?

I just started reading The Paleo Diet By Dr Loren Cordain. It is interesting. After being on strict SCD for 2 weeks I was having a lot of mucus in my stool. As soon as I stopped the yogurt and cheese. I no longer have it. It is too soon to tell if it was the yogurt the cheese or something else.

Paleo diet is rite in line with SCD and totally makes sense. The only problem I have with Paleo is it is not written specifically for those with IBD or other bowel issues. Therefore I would recommend starting SCD after reading the book then progress to Paleo. I think if you do not do the SCD gradually with cooked fruits and vegetables. You will just irritate your bowl with all the increase in fiber. Then think the diet doesn't work. I am at the point were I am eating dried fruits and nuts without any D!

I am hopping to get off Asacol in the next few weeks. But i am on the max dose now with Canasa suppository every other day. I will stop the Canasa this week and slowly taper the Asacol down.
02-28-2013, 05:45 PM   #24
mattquinlan
 
Join Date: Feb 2013
Location: Roswell, Georgia
I'd like to share my journey and the impact of SCD on my life and health.

I was diagnosed with Crohns at age 17 in 1991 and spent 20+ years on every conceivable pharmaceutical available (prednisone, asacol, pentasa, humira, remicade, purinethol/mecaptapurine/6MP, and even a self-injectable drug trial). The ONLY thing that ever really worked was predisone and I spent 15 years on different dosages of pred but never enough to keep my symptoms at bay. I went *years* at a time without a single solid stool. I had honestly given up hope once remicade and humira had failed me.

One day my wife was talking to a co-worker who mentioned that her husband had crohn's but had been asymptomatic for 9+ years. My wife asked which "miracle drug" had been the key for her co-worker's husband and was shocked by the response "he hasn't taken any medication other than a multivitamin during that time. his condition has been managed entirely through diet."

I'm an engineer and a skeptic (actually, such a skeptic than I'm also an atheist). I wholeheartedly believe in "better living through chemistry".

During my wife's company holiday party about 15 months ago we happened to sit with her co-worker and he co-worker's husband who has crohns. He shared with me the "Breaking the Vicious Cycle" book... actually, he gave it to my wife b/c I thought it was some stupid fad book written by a high school dropout (like most diets). My wife read the book and told me that the diet was devised by an MD and then refined by a biochemist I finally agreed to read it.

That weekend we decided to try the diet. I did a lot of online research and there were a couple of key points that weren't in the book but that were recurring themes in the comments sections of people on the diet:

1. this is not like a weight-loss diet where you can cheat monday by 500 calories and make up for it on tuesday... STRICT adherence to the diet is the #1 predictor of success

2. this diet is HARD to do and requires a LOT of effort. If you can get the same result by simply popping a pill then do it. It will be MUCH easier on you. Expect 8-10 hours of extra food prep weekly. This diet is a last resort.

3. there is often a period of a few weeks where things seem to get worse before they get better (people theorize that it's the bad flora dying off). This is where most people give up and consider the diet a failure.

4. the homemade yogurt is KEY (but you have to "cook" it longer to make sure all of the lactose is consumed in the process)

5. the diet is NOT permanent. once your gut's flora is back in balance you can slowly reintroduce foods into your diet! (this is the BEST part).

Month #1 : I felt pretty rough. felt like I wasn't getting enough food. didn't like the food I was getting. I was close to giving up.

Month #2 : I turned a corner and started feeling better each day until one day I had a semi-solid stool! I started buying (instead of making) a lot of food from online specialty stores that were SCD friendly.

Month #3 : Consistently solid stools. felt awesome.

Month #4 : started adding "real" food slowly back into my diet and maintained the solid stools. By the end of month 4 I was off the SCD diet (although I did develop better eating habits with less sugar through the process).

I have been completely asymptomatic now for a year! I have shared my story with 4 other fellow crohn's patients locally and every single one of them have had similar success. Literally, all five of the people I know who have tried this (including the person who introduced it to me) have had success with it. The key seems to be ... YOU CANNOT CHEAT.

Yes, I know that anecdotal evidence does NOT equal double-blind controlled scientific studies. I am a study where n=1 and I accept that. However, I get really annoyed with people (usually physicians) who tell dismissively me about the "placebo effect" (what about the placebo effect I did NOT recieve with the other 12+ medications I tried?). Scientific studies must be funded by someone. Usually by pharmaceutical companies who will make lots of money based on the results of the study. But there is no money to be made from SCD so no strong studies exist. I don't blame doctors. I don't blame pharma. That's just capitalism at work (which I love). I just wish I had learned about this diet 20 years ago... it would have made a HUGE difference in my quality of life (there's nothing quite like standing at the alter during your wedding ceremony and being more nervous that you were going to crap your pants than nervous about your wedding).

As I mentioned earlier... I'm not a religious man. But I have been converted from skeptic to believer when it comes to SCD. As my wife said to me that weekend "JUST TRY IT! WHAT DO YOU HAVE TO LOSE?"

note: I undertook this diet with the full consent of my gastroenterologist (he was a skeptic too until he did my last colonoscopy!)
03-01-2013, 02:01 AM   #25
Tantija
Senior Member
 
Tantija's Avatar
 
Join Date: Mar 2011
Location: London, United Kingdom
Shantel and shaz I read the book but it's so confusing lol, why does something healthy like algae have bad bacteria? that stuff is in health food stores! I keep hearing testimonials like the one from your friend shaz, but it's such a hard diet to follow, I am probably going to be like you and try to adhere as much as possible.


Natalie I'd love to know what book that is or any links you can provide.
Hi. No, it's not so hard to follow. I am on SCD diet 1 yera and 3 month already and have not cheated once. But you have to amend it for yourself. For example spinach is very healty but not for me, it makes my D. very bad. Almost all row fruits and veg are making my D. worse. But I can eat pears, letuce, tomatoes and cucumber with no problems.
__________________
Got ill in 1997
Diagnosed in 2006 Crohn's of ileum and small intestines
Operation: September 2006 removed ileum and part of small intestine 35sm in total
SCD Diet since December 2011
B12 one injection in 3 month
Vitamin D, Zinc
Medication free
03-01-2013, 08:45 PM   #26
wildbill_52280
Senior Member
 
Join Date: Sep 2009
the advice the book gives is generally good advice, the problem is that fruits still contain lots of sucrose, and all fruit will generate symptoms of diarhea, but if you follow this diet, you will still be better off then someone who may just eat whatever and gorge on a high sucrose processed sweets.

and yea, eating whole nuts is very difficult.

the main concept of the diet is low lactose and sucrose and avoiding some complex carbs while eating homemade yogurt. i generally follow these guidelines and control diarhea symptoms very well, like 1 bm a day thats it with no meds for years now, since 2009.

in my experiance just following this diet isnt enough to control all symptoms, especially inflammation, UNLESS you are making a probiotic tyep of yogurt that uses bifidobacteria, that may be able to control the inflammation, but i think the book actually recommends staying away from bifidobacteria, dont remember tho. normally starter culture for yogurt do not have bifidobacteria, but lactobacillus and streptococcos? or something like that.
03-02-2013, 03:38 AM   #27
Tantija
Senior Member
 
Tantija's Avatar
 
Join Date: Mar 2011
Location: London, United Kingdom
...in my experiance just following this diet isnt enough to control all symptoms, especially inflammation, UNLESS you are making a probiotic tyep of yogurt that uses bifidobacteria, that may be able to control the inflammation, but i think the book actually recommends staying away from bifidobacteria, dont remember tho. normally starter culture for yogurt do not have bifidobacteria, but lactobacillus and streptococcos? or something like that.
Hi. For me the diet itself controls the inflammation. After 3 weeks of the diet my blood did not show any inflamatory markers. And I wasn't using yougurt yet. But I feel that my intestines react when I am in stress or really worried about something. So trying to avoid stressful situations: didn't take much better paid but very stressful job. Trying to avoid to do things after work few days in a row as I feel very tired. For example I do play bridge on Wednesdays but if I have to do something Tuesday or Thursday evening ( see friends, go to opera and ect.) I will cancel bridge.
Reply

Crohn's Disease Forum » Diet, Fitness, and Supplements » SCD and Paleo Diets » The specific carbohydrate diet seems kinda scary
Thread Tools


All times are GMT -5. The time now is 04:41 AM.
Copyright 2006-2017 Crohnsforum.com