Dear UC’ers of the world and all other concerned family/friends,
I received an email a few days ago from one of you asking what the heck was going on with the SCD study that is taking place right now at Rush Medical Center near Chicago, IL. Crazy how times flies, but I originally posted on this study back in January of 2011 (read the post here if you like) and since then, I’ve mailed my poop 3 times to Rush Med Center for “inspection/ DNA sequencing etc… Thanks scientists for doing the dirty work out there in Chi town!
Real quick, for anyone new here, the study is looking at the bacteria within stool samples of both Crohn’s Disease and Ulcerative Colitis patients who follow the Specific Carbohydrate Diet and comparing stool samples to other Crohn’s and UC’ers who do not follow this diet.
Like I said, I’ve mailed quite a bit of my poop to them, and in a response I received today by one of the lead scientists, I am now finished through with their study. I was thinking I’d be sending them another round soon, but nope, I’m all through with my sample donations. What is happening now though, is they are still working through the data processing, and continuing their poop collections from other participants out there.(Some of the participants are also readers and users of this site, so big props to you all!!) And, the group of scientists/doctors is in the process of obtaining additional financial grants/funding from the NIH (National Institute of Health) As you might imagine, all this research isn’t cheap and applying for grants and funding is often just as time consuming as the scientific stuff.
Not much has been shared in terms of early data, but there was an email that I received not too long ago with some of the news regarding the EARLY data from the study. I just received permission to publish the PDF file for any of you to look through, and if you are interested in learning more about this, give them a read, and post some comments below on your thoughts or questions. I think we have a chance to spark a neat discussion from all this. I’m pretty darn excited to say the least.
SCD Diet Clinical Study abstract Rush Medical Center page1
The second file simply states the following:
“Conclusions: This pilot study suggests UC patients on SCD have a differing microbiome compared to controls. Further studies with next generation sequencing are warranted to define the changes in the microbiome as a results of SCD”
Bottomline:
Results are in the early days, and more work is needed. I do know that the study is still VERY MUCH IN NEED of “control” group patients to send some poop in the mail. That means that for people who are not using the SCD diet, RUSH medical center needs your help. They have plenty of people using the diet, but not enough people who aren’t. If you are interested you can go and pull up this PDF file and contact the information listed:
https://www.ihaveuc.com/ulcerative-colitis/SCD-diet-research-study-colitis-crohns.pdf
Thanks to all of you again who are actively involved with this study, I know it’s sometimes a pain to be pooping in the little plastic tray and bagging it up in the Fed Ex drop bag and getting it out the door, but you’re doing something good, and your efforts are going to help out alot of people move closer to figuring this disease out. Thanks also to the UC’er who wrote to me earlier asking for an update.
When further word comes in, I’ll definitely try to keep you all posted and updated.
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-Adam
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I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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Very awesome news!!! I live in Chicago and my GI is actually at Rush (Keshavarzian), I’ve done research studies for him before, too bad I didn’t know about this one last year, would have loved to have been a part of it! Interested to see final results!
if you are NOT doing SCD dieting, you can still be a part of it, I think I got the link in the story for that. Way cool Erica, you’re at RUSH!! and of course way cool you’re in CHi Town!!! you be getting ready for springtime aren’t you!!!:)
I appreciate the attempt to further research the SCD but this study doesn’t really answer why some IBDer respond very well to the SCD and others don’t. First, it’s a very self selecting group of people (I assume the SCDers are the ones in remission and very keen about the diet? Maybe I’m wrong here but I believe that’s the case). They (researchers) believe that IBD in the future will be divided into a number of sub categories (not UC/CD/IC) but something like “IBD1, IBD2, IBD3 etc) and that they’ll be able to categorize patients at dx (based on better understandings of genetics, the disease etc). Different groups will be treated with different therapies (meds, diet ie. Entral nutrition) etc. So, my point (if this makes any sense) is that perhaps the SCDers started with a different set of bacteria to begin with and that it’s not the scd which changed their gut bacteria. To make this claim, you would have to test a group of IBDers before they started the diet and at various intervals over years. I think this would have made for a better and more convincing study.
Hi SC,
I think you raise some VERY interesting points!!
I’ll see if any of the people from the study might be able to add a reply with what they are seeing/thinking on their end, as they might have some followup to your ideas that may already be in the work, or at one time were considered.
thx again for all your ideas.
sc….what you said makes a lot of sense. I think the causes of UC and the reactions to the remedies that we all try to put it into remission is a LOT more complicated than most of us realize.
Many things (pills and diet changes, etc.) that work for many UCers will leave many other UCers a lot worse off.
And vice versa.
Its like we are dealing with MANY “different diseases” all lumped under the name UC.
I would not be surprised to see those “sub categories” go as high as IBD35…. IBD57….. etc… who knows how high.
Yeah, I think that this is one complicated disease.
…..and lots of research is needed.
George in Napa
Thanks guys,
I’d love to see the full study but I just feel there are some fundamental flaws to it and I think this makes it easy to dismiss by the medical profession. My daughter is one who responded a little or not at all to MANY dietary interventions when clearly it helps many people and the reason for this is unknown and this study’s not going to begin to address this.
I am glad to hear of research being conducted. That is the only way we will get answers. Scientists need us to contribute so they can test, analyze and come to conclusions so that we will know more about IBD/UC. It can’t be cured without information. I’m sick of doctors just treating UC instead of advocating for a cure. Like drugs are the ONLY way. The drugs are the worst part because they cause so many side effects, and they are only prolonging the disease, NOT eradicating it. Thanks to Adam for sharing this study. Keep us updated on the research.
I’m participating in the study in the control group! I kind of ran into a small snafu and have to get another colonoscopy to pinpoint my diagnosis. The Dr. is concerned I might have Crohn’s, but yes. I urge everyone NOT on the SCD diet to get information on being a part of the control group. The Dr. I spoke to has told me that there have been very good results with people who are on the diet. Good news for the UC community indeed!
Anything new here?
Not yet, I’m afraid it nay be many months as the data gather us easy but the processing usually takes much longer
Hi. I wondered if you knew more about where they are at with this research. My daughter is newly diagnosed and 5. Docs are all for pumping her with meds but say diet makes no difference so will not support diet changes in a child. I am trying to learn and read and think SCD could help us and I should at least give it a go for her. Wondered if research was further on so I could taj to my daughter’s docs (or maybe just try it)
Hi Fiona,
Unfortunately no news as to when the latest round of data analysis from the study will be released. I was told that it very well could be several years before anything was released after the data collection process was complete though. So hopefully within the next year or two we’ll hear something.