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Hey everyone, I'm new to the forums here but I'm very active at HealingWell.com>Ulcerative Colitis forums. 

Anyway, i'm 21 years old, very active/healthy until being diagnosed (severe chrons/UC) in sept. '11, I recently started the SCD, I'm not too sure if its helped or not but i'm a firm believer in diet and nutrition over drugs anyday.

My question about the SCD diet, is there any other way to get short chain fatty acids? Because according to an article on CCFA, doctors are worrisome about the diet because it lacks those specific fatty acids that fuel colon cells.

This is my regimen and has helped me for several months.

Forever Aloe Vera Juice, Rainbow Light Daily Multivitamin, 3000mg Fish Oil, herbs: Licorice & Marshmallow Root, Slippery Elm, Chamomile and Peppermint

800mg Asacol 3x a day
Currently 7.5mg Prednisone (40mg for 1 month when diagnosed) -currently tapering.

 Reply posted for lel25.

Hello, My daughter who is 13 years old was just recently diagnosed with Ulcerative colitis two weeks ago.  She was recently released from the hospital and is home with me today.  When they sent her home she still was bleeding a little and on bunch of meds.  My question is Im trying to get her flare under control and Im trying to find different foods that work for her.  I dont know what SCD is???  Can you please give me some information.  If this is a book can you let me know where I can buy for her.  Thanks so much.

 Reply posted for lel25.

My 16 year old daughter began the SCD 2 weeks ago and is having amazing results. I feel so encouraged after reading your post. I just know we are on the right path. If you wouldn't mind emailing me so I can ask you a few questions about the diet I would greatly appreciate 

I am so grateful for sites like this where we can network and be there to support one another. Thanks, in advance, for your help.   

sstokes@ptd.net

 Reply posted for lel25.

My daughter began the SCD about 2 weeks ago and is having amazing results!   She is feeling great and after having a flare up for the past  4 months, her bleeding has finally stopped!  My question is about the yogurt. Does it have to be home made?  Because we have been using a brand we found in whole foods that is organic and lactose free. I want to be sure this is SCD approved. If anyone knows, please let me know. Thanks so much. 

New to the form. My daughter was dx with colitis Sept 11, she is a college division 1 athlete and is really having a hard time with bleeding, and everything. I preach diet to her, but she said it is hard being an athlete. Was the diet in the breaking the vicious cycle book??? I'm trying to find a way she can eat the good stuff when she travels, and works out. She has a constant go-go-go life style and is trying her hardest to keep going. 

Any suggestions on diet, easy travel food would be great.

Thanks

 Reply posted for administrator.

Thank you!  Sorry that I jumped to an inaccurate and uneducated conclusion.  Thanks for explaining the process.

 Reply posted for jessicamagoch.

CCFA has funded a number of diet and nutrition related grants over the years.  These grants studied how absorption (or lack of absorption) of various nutrients can affect disease course, the affect of diet on inflammation, preserving normal growth for children with IBD, nutritional status on immune function, and comparing breast feeding vs formula.  The microbiome project work will study how the bacteria in our gut, which helps to digest food, affects our immune system.  The Clinical Alliance is also considering some potential projects looking at diet and nutrition in IBD.  

One of the initial modules in CCFA Partners gives patients an opportunity to answer diet-specific questions that will not only help us gain a better understanding of how diet affects their disease but also give patients an opportunity to play an immediate and direct role in IBD research.   The registration information for CCFA Partners is on our homepage at https://cgibd.med.unc.edu/ccfapartners/

Any researcher can submit a grant application to study the SCD diet.  Applications that follow grant requirements can be considered

 Reply posted for jessicamagoch.

Are you on SCD or another similar diet?  

 Reply posted for jessicamagoch.

That would be great, thanks!  I truly believe that diet can cure most, if not all of us.  The problem is that one diet will not work for everyone and money isn't going to research this topic to help people find a way to find the diet that will work for them.  I like SCD (Gaps, etc) in that it starts with an intro that has limited foods and then you add others slowly in and make sure you can tolerate what is being added.  This is similar to the 'elimination diet' too I think.  It may be difficult if intro items aren't tolerated and someone may not know that right away and without realizing it will be set up for failure unfortunately.  SCD/GAPS definitely needs to be studied and researched and made more public so people know about it and know how to make it work for them.  

 Reply posted for RedK.

I agree.. i've been hesitant to donate for the same reason... the drug companies will make their money, they don't need ours.. i think this foundation is backed by abbott laboratories.  wonder if someone from the foundation would weigh in?
i believe there are some fundraisers going on to support diet research.. i will post if i know of any..

 Reply posted for jessicamagoch.

I do not know if money from CCFA goes to SCD/other diet research.  My guess is no, but I'm not sure about that.  I wish it would and will find out before next years take steps walk since I'd rather not give a couple thousand in donations to an organization that would not contribute $'s to diet research for IBD.

 Reply posted for winship.

Ultimately, we all have to learn how to live our lives while managing Crohns. For me, some of the SCD recommendations were just too constraining on my ability to get out there and see my friends and have a semblance of a life, so I tried other options. Thankfully, my Crohn's is not the most severe case, according to my doc, but I really think that there isn't any one path that ANY of us can follow to clear up these symptoms. There's no sure-fire way, unfortunately

 Reply posted for stereofidelic89.

Does anyone know if money from CCFA goes to clinical trials for SCD? or is is all going to pharma companies to make more drugs (and money)? the only way doctors will acknowledge the diet or legally be able to recommend it is if they have the medical data to back it up. they never do their own research.  and some of us have to be willing to be so strictly SCD for a time period to prove it to them!.

Been on SCD for three years... definitely cheated a lot and learned my lessons but was able to stay off medication.  

Does anyone know?Thanks

 Reply posted for winship.

I fogot one thing.  It says eat zuchini and green beans.  That confuses me cause it has seeds in  it.  I thought we were suppose to watch that.  Also the berries have seeds in it.  Can I get my almond flour cheapier somewhere else and the yogurt machine?

 Reply posted for winship.

With this diet I cannot have any soy milk.  I drink decaff coffee and was putting soy milk in it.  Not a lot though.  I gather that is not a good thing.  I find some of the bread recipes difficult.  The almond flour does not cook right in my oven.  I am totally confused as to what to eat.

 Reply posted for Lca.

What kind of diet food do you eat.  

 Reply posted for lel25.

My number is 7197847544 please call when you can.  I live in Colorado....

 Reply posted for lel25.

I don't know but I find the almond flour expensive and the shipping.  Also the yogurt thing I do not know if I would have time for.   I don't know what to do!!!   LOST!!! 

 Reply posted for stereofidelic89.

If the short term fatty acid regimen is not working then maybe it isn't really what you need??  SCD has been a miracle for me when drugs never worked.  Look at the following websites for more info on the diet:

pecanbread
breaking the vicious cycle

and be sure to read the reviews about the BTVC book that are out on amazon.  They give good views on both the positives and negatives of the diet.

For me there are not any negatives and I wish someone would have led me to SCD years ago!!

Kris

I am a 28 year old female diagnosed with Colitis in May of 2010.  After a year and half of mild/moderate flares, and continually upping my dose of lialda and Rowasa, my husband and I decided it was time to try something more proactive.  I was exhausted all the time, and tremendously stressed every time I saw blood and thought about the damage occurring in my GI tract. 

I wanted something that may treat the causes of my illness.  After much research, I bought Breaking the Vicious Cycle and read it cover to cover.  Elaine's science made sense to me, and so I decided to try the diet.

I was a pasta/popcorn addict prior to starting, and was surprised that I was able to cut out all grains with my husbands support (he mostly does the diet with me, and our house has exclusively diet friendly food).  I followed the diet very closely, even starting on the intro diet prescribed after the publishing of Breaking the Vicious Cycle.  Three days after starting the diet, my blood and mucus cleared up.  I am now four months in, and I haven't had a symptom since!  I do occasionally have pain that I now think is gas related, and once or twice I have seen small levels of mucus, but no blood!

I am totally off the rowasa, and have cut my lialda to two pills a day (down from 4).  I also feel INCREDIBLE!  I have lost ten pounds, and have so much more energy than I can ever remember having before. 

I am not calling the diet a success until I go longer between flares than I previously did (my record was 7 months flare-free around this time last year), but I can say that I feel great, and it feels amazing to be proactive and take back some control over my health.  I would HIGHLY recommend SCD to anyone, and would be happy to talk to anyone about how to start it and stick to it- after you learn a few tricks and replacement ingredients, it really isn't too hard, it just takes preparation and forethought. 

 Reply posted for winship.

Hi,

  This message is for everyone who saw good results with SCD . I read  BTVC book and have many questions on meat and eggs as these are the main ingredients in almost all the recipes.  I would like to have a friendly conversation with any one of you regarding this diet. I want to put my son on this diet . Can you please respond to my post ? If you are willing to talk to me, can you please email me at rekhan08@gmail.com?

Thanks in advance.

 Reply posted for Mum.

Hi Mum,

    I just read your posting and would like to talk to you over the phone. I tried the diet for my son some time back . I want to put him on this diet again to give another try.  I have some questions on this diet and talking to somone who tried this diet succeeded would really help me . Can you please let me know if I can contact you by emailing me at rekhan08@gmail.com?

Regards,

Rek

 Reply posted for Mum.

I was amazed too and angry that my doctor  had said diet would have no effect. There is lots of well understood science to explain why it does work. Tell your daughter to have a look at Jack Kruse's blog. I have made some further improvements  rapidly with small adaptations to the way I live and using cold temperatures.

My daughter is 23 now, diagnosed with severe UC at 15. 6 transfusions will tell you about the bleeding. Asacol, Colazol, Prednisone 60-80mgs for months, side effects, Lialda, enemas, Imuran etc, you know the list. When her doc wanted to up all the meds to the "new current thinking" levels it was a galvanizing moment to want to give the SCD a true test. So it has been 1 and 3/4 years on SCD and she is off all meds, no flares to send her to the doc or hospital. Simply amazing. WE are amazed. Wish you well on your journey.

 Reply posted for winship.

We know someone who has been 100% on the SCD diet for 10 years and she has been symptom free ever since and more healthy than ever before. Her website is extremely helpful if you are genuinely more interested in learning about SCD. The website it nomorecrohns.com. Check it out.  My husband's dr also doesn't believe in diet and wants my husband to be on humira for the rest of his life or have surgery... we'd rather take control of his health by dieting together and seeing if SCD works for him. and if staying on this diet 100%  (this is key) will help my husband get better, then we will. Many medical doctors don't know enough about SCD to give opinion on it. 

 Reply posted for stereofidelic89.

Our health has everything to do with our environment and what we eat. The latest genetic research is showing how much our gene expression can be altered and how little specific genes relate to illness in most cases. Read about epigenetics.

Scd/paleo/high fat - low carb eating has helped me enormously for over 5 years. Do be careful with the supplements. Their effects can creep up on you slowly. I had a very bad experience with a combination of pro and pre-biotics before scd and I thought they were working for weeks. Once stabilised on scd it is much easier to feel the effects of supplements (I would never have believed that before scd and I already ate quite a healthy diet).

I don't worry about the sfas. There is a lot of good science related to the negative effects of too much dietary fibre.

Fats are extremely important but very difficult to interpret what is best. I use animal fats, butter, ghee, coconut oil, and olive or macademia nut oil occasionally. I eat oily fish fairly regularly but am cautious of fish oil. The oils become rancid very easily and there are suggestions that it can seem effective initially because it is immune suppressing but it also promotes inflammation.

It is not easy but you really need to look after yourself with IBD. I now just think of my doctors as a safety net. Keep reading, it's well worth it.

 Reply posted for winship.

I agree with you Winship. And people are so clueless to what 'health' actually means. That if something is advertised as 'all natural' it must be good for you. Wrong. 

My GI doctor has never EVER talked to me about diet. He says its all in my genetics and I should just stay on my medicine for the rest of my life. What an idiot, I live in south carolina right now but i certaintly wasn't raised here.

I'm from Vermont, grew up in a very natural environment but got a little carried away with junk food, still and always have been a very slim guy, 21 now. 

I understand ALOE VERA is not on the SCD diet, but I would heavily advocate this plant because when I was going through the most intense pain and bowel movements of my life, waking up every night at least 4 times, taking a shotglass (1-2oz) of Aloe Vera Juice is the only thing that would calm my stomach and allow me to go back to sleep and stop going to the bathroom. This specific brand I take "Forever: Aloe Vera Juice" has over 200 different compounds and has been proven to treat Inflammatory Bowel Diseases. It may be an immune stimulant but I stand strong with this plant juice and believe its helped me. I was diagnosed with Severe Chrons/UC in september and already only 5 months later i'm down to 7.5mg of pred... i'm so close to tapering off this stuff and I'm doing whatever I can to stay at health.

I also take herbs (Licorice Root/Slippery Elm/Marshmallow & Chamomile/Peppermint) which are amazing and coat the stomach so well. Even if they are mucilaginous herbs, I know they treat well.

 Reply posted for stereofidelic89.

Just like the other person said the Aloe and Vitamins are not SCD Legal. Google what you are allowed and follow that. I have been trying it for 8 months and it is hard. I take Freeda's Vitamins, also GI PROHealth Acidophilus, L. Glutamine, Vitamin C and D and Boswellia 5 loxin. Research Crohns Dad. He helped me through all of this from the beginning. My doctor wanted me to start Pred and the stronger meds and I said NO. I did try Entocort but that was really mild and it did not really do anything. Diet is the MAIN THING. Also check out LDN. It is a drug but very mild and no side effects. The homemade yogurt is really helping me. I usually hate yogurt and I am surprised it does help. You will get more understanding by going to Crohns Dad.

Good Luck
MJP

 Reply posted for stereofidelic89.

In addition I see you are on Aloe. That is not SCD legal. If you don't follow the diet completely you'll never know if it works. My doctor has me on "Pure" brand vitamins. SCD seems to recommend Freeda by I was told the pill form they are in are to difficult to digest.

 Reply posted for stereofidelic89.

Just found out the 'Crohn's Dad" was kicked off this forum so  I came to visit this site to see what it's about. Looked up SCD in the search and saw the article you are referring to. Unfortunatly I found it to be irresponsible in it's opinions. After reading it I'd be afraid of diet. From my experince most doctor's know very little about diet. When I was first diagnosed my GI told me to look up the low residue diet. You could die if you're on that to long! I then when to a RD becuase I was so confused by all the diets and overwhelmed from my diagnosis. She really was of no help. I went on SCD. Contrary to the article it's not difficult once you get used to it. One doctor quoted in the article said it's hard "becuase you can't eat processed foods". Are you kidding me?! That shows you how much he knows about nutrition. My GP sent me to another RD and I had to teach her about carageenan (sp?) and its immflamatory properties. It was in a medical food she was trying to sell me. Almost 3 years ago I had another night in the emergency room on morphine. Saw my GI the next week. He wanted to move me to an injectible. We parted ways. I've been seeing a natruopath, taking chinese herbs, having accupuncture, and on SCD and I've never looked back. No, it's not been a sucuss only journey but I have not been in the hospital since. There may be a lot of good in Western Medicane but for the most part it treats the symptoms and not the cause as does Traditional Chinese Medicine. Doctors in the country are taught by phamarcutial companies and for the most part are pill pushers or cutters. I am so blessed to have found a wonderful homeopath. If I haden't god only knows what would have happened to me.