• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

SCD in Pediatric CD Shows 80% Response

Dr. Suskind et. al. of Seattle Children's have published a 12 week study on SCD for PCD. There was no control group, but 80% of the participants showed clinical remission by end of study period. What is nice with this study is they have results showing normalization of PCDAI, ESR, CRP, to an extent Calprotectin. They also analyzed bacterial composition and showed normalization of microbiome toward beneficial species.
 
I'm having trouble finding the full research article online, however this is a promising small study. I'm thinking of trying scd again. We tried this when she was 4, but I think her disease was just way too active when we started (no meds at the time). Anyone else doing this or revisiting the idea?
 

my little penguin

Moderator
Staff member
Pilgrim
Optimistic has used it combined with formula (partial en)
Very few have had success with scd for their kids on here
Most kids just lose weight
I understand the want to try it again for her
But her fecal cal from your previous posts are still showing major flare and kids under 5 have a different phenotype of ibd
Even those dx under 10 have a different phenotype than those dx between 10-17
Which is where the majority of ibd kids are dx around age 13
 
Pilgrim, on my iPad I found I could access the complete article from the right side of the screen. I think I clicked on "Article as PDF" and that's when it came up. It's under the heading "Article tools". I thought it looked really promising for me, but I understand it's really different for young kids with IBD.
 
We are going on month 9 of a modified SCD plan and supplementary meds. (originally Entocort before SCD started, now pentasa) and a probiotic mix. Daughter diagnosed at age 11, but first 'flares' were at age 10. We are followed closely by GI including labs/fecal cal every 6 weeks, which are now normal. They will do colonoscopy and other bigger tests at year mark of treatment to make sure progress on outside matches inside.

We worked with a nutritionist to slowly modify the SCD plan as we had to make it sustainable for our family and a tween socially. Prior to treatment, our daughter had stopped growing for a year and lost a lot of weight. She was sick every day and was missing a lot of school (took a while for correct diagnosis bc of other med issues). She has now regained weight, started growing again and playing sports.

If she were not growing or gaining weight, we would have gone to a more aggressive treatment. (We had extensive discussions with doctors on how long we would test this treatment bc of growth and had a clear plan if it wasn't working by what date we would switch). We are also pragmatic that she may need to go to a more aggressive treatment if any test/lab shows it's not working.
 
I have benefited from applying some, but not all, of the principles of the SCD diet which I learned from the book breaking the vicious cycle 7 years ago. oats wheat and well cooked pinto beans agree with just fine though despite the book advising us to stay away from them but lactose and sucrose always affect me negatively just as the book states. I've never been able to successfully make the SCD yogurt, but i think for a shortperiod time i helped when i used a certain type of starter which used a specific type of bacteria traditionally used for yogurt, the company was called natren and the strain from from bulgaria where yogurt originated from. never had luck with yogourmet starters though, so thats my advice for anyone attempting the diet.
https://www.natren.com/yogurt-starter-175.html
 

my little penguin

Moderator
Staff member
Unanswered Questions

Steven Brant, MD, professor of medicine and director of the Meyerhoff Inflammatory Bowel Disease Center at Johns Hopkins University in Baltimore, Maryland, said the initial results are interesting, but inconclusive.


He noted that the study was designed to be preliminary and to test safety and potential efficacy, and results should be interpreted as such. There was no control group, it was open label, and the patient size was very small.

In addition, two patients dropped out because they could not maintain the diet, he points out.

"In a strictly clinical science way, you have to look at those as failures...you have to assume those people would have done poorly," Dr Brant said. Also, he said, it is important to consider that three of the patients who remained in the study lost weight, a particular concern in children.

Still, eight of the original 12 children were in remission, and that is impressive compared with many other therapies for IBD, he said.

He added that it may be unclear how much effect any new medications, rather than the diet, might have on the outcomes. Although participants could not change medications for a month before the study (2 months for stronger medications), some drugs take longer than that to show effectiveness, Dr Brant said.

Among those is azathioprine, Dr Brant said, which would fall under the 1-month restriction in the study, but can take 2 to 4 months to show effectiveness. According to the study, two patients were taking that drug.


The patients may have also become more adherent to their medications because they were part of a study and would regularly be checked by a physician, he added.

"The exciting thing really was that there was a significant decrease in the C-reactive protein," he said.

These are the kinds of studies that move us forward and show that it may be worthwhile to take the next step in a large study, he said.

First, it is important to find out with larger studies whether this diet really does work compared with a control group, and if so, what part makes the difference, he said.

In addition, the authors report that the diet helped patients move toward a more normal microbial pattern, which raises a chicken-and-egg question, Dr Brant said: "Is it that you got improvement in the inflammation and then the bacteria changed, or did a change in the bacteria improve the inflammation?"

Dr Brant told Medscape Medical News that he has had mixed results among his own patients who have tried SCD. Whereas some patients on the diet have been able to move off immunosuppressive therapies, most have not. "Some have been able to come off but then have had to come on again," he said.


"I think there's great interest in [SCD]. I think it's a very big challenge to follow the diet," he said.

He more commonly recommends a Mediterranean-style diet with few processed foods and simple sugars and more fish than animal protein.

The authors acknowledge the limitations of the study, and Dr Suskind said in the news release that priorities for treatments will vary by the individual.

"SCD is another tool in our tool belt to help treat these patients. It may not be the best treatment option for everyone, but it is an effective treatment for those who wish to try a dietary therapy," he said.

The authors and Dr Brant have disclosed no relevant financial relationships.

From
http://www.medscape.com/viewarticle/873976?src=wnl_edit_tpal&uac=185734DZ




IBD: Diet Improves Symptoms in Small Study
Marcia Frellick
January 04, 2017



Pilgrim this is the Seattle SCD diet

Unfortunately there were 12 kids
3 lost weight
2 couldn't handle it and dropped out

What they don't say until the very end
It that the kids could be on immunosuppressants or biologics
And only have started them before the diet started
As long as it wasn't with a month for immunosuppressants and 2 months for biologics

Given 6-mp and aza can take 3-4 months to be effective
And biologics like humira 3-5 months
I am not sure how the ridiculously small study can prove much of anything
About diet

The opening sentences make it seem like it was only diet used in these kids and no meds

Hopefully a better study will be designed if it's studied more
 

my little penguin

Moderator
Staff member
IBD: Diet Improves Symptoms in Small Study
Marcia Frellick
January 04, 2017

Diet alone can lead children with mild to moderate ulcerative colitis and Crohn's disease into clinical remission, suggests a small study published online December 27, 2016, in the Journal of Clinical Gastroenterology.

"This changes the paradigm for how we may choose to treat children with inflammatory bowel disease [IBD]," lead author David L. Suskind, MD, from Seattle Children's Hospital in Washington, said in a hospital news release.

Most centers typically treat with steroids or other medications, which come with potential adverse effects, the authors note.

Specific Carbohydrate Diet

The diet tested over the course of 12 weeks is called the specific carbohydrate diet (SCD), and it removes processed foods and sugars (except honey), dairy, and grains. It includes only vegetables, fruits, meats, and nuts — natural foods rich in nutrients.


At the end of the 3-month study, eight of the 10 patients, aged 10 to 17 years, who finished the study achieved remission from the diet alone, the authors report.

Twelve patients (nine in Seattle, and three in Atlanta, Georgia) started SCD with evaluations at 2, 4, 8, and 12 weeks.

By the end of the study, mean pediatric Crohn's disease activity index decreased from 28.1 ± 8.8 to 4.6 ± 10.3. Mean pediatric ulcerative colitis activity index dropped from 28.3 ± 23.1 to 6.7 ± 11.6.

The diet was not effective for two patients, and two were unable to maintain the diet. Mean C-reactive protein level dropped from 24.1 ± 22.3 to 7.1 ± 0.4 mg/L at 12 weeks in Seattle patients (normal, <8.0 mg/L) and decreased from 20.7 ± 10.9 to 4.8 ± 4.5 mg/L among the Atlanta patients (normal, <4.9 mg/L).

The patients in the prospective trial had mild to moderate IBD, determined either by a pediatric Crohn's disease activity index of between 10 and 45 or a pediatric ulcerative colitis activity index of between 10 and 65.

To be eligible, patients could not have started a new IBD medication for at least 1 month before the study for immunosuppressives and 2 months for biologics.

Unanswered Questions

Steven Brant, MD, professor of medicine and director of the Meyerhoff Inflammatory Bowel Disease Center at Johns Hopkins University in Baltimore, Maryland, said the initial results are interesting, but inconclusive.


He noted that the study was designed to be preliminary and to test safety and potential efficacy, and results should be interpreted as such. There was no control group, it was open label, and the patient size was very small.

In addition, two patients dropped out because they could not maintain the diet, he points out.

"In a strictly clinical science way, you have to look at those as failures...you have to assume those people would have done poorly," Dr Brant said. Also, he said, it is important to consider that three of the patients who remained in the study lost weight, a particular concern in children.

Still, eight of the original 12 children were in remission, and that is impressive compared with many other therapies for IBD, he said.

He added that it may be unclear how much effect any new medications, rather than the diet, might have on the outcomes. Although participants could not change medications for a month before the study (2 months for stronger medications), some drugs take longer than that to show effectiveness, Dr Brant said.

Among those is azathioprine, Dr Brant said, which would fall under the 1-month restriction in the study, but can take 2 to 4 months to show effectiveness. According to the study, two patients were taking that drug.


The patients may have also become more adherent to their medications because they were part of a study and would regularly be checked by a physician, he added.

"The exciting thing really was that there was a significant decrease in the C-reactive protein," he said.

These are the kinds of studies that move us forward and show that it may be worthwhile to take the next step in a large study, he said.

First, it is important to find out with larger studies whether this diet really does work compared with a control group, and if so, what part makes the difference, he said.

In addition, the authors report that the diet helped patients move toward a more normal microbial pattern, which raises a chicken-and-egg question, Dr Brant said: "Is it that you got improvement in the inflammation and then the bacteria changed, or did a change in the bacteria improve the inflammation?"

Dr Brant told Medscape Medical News that he has had mixed results among his own patients who have tried SCD. Whereas some patients on the diet have been able to move off immunosuppressive therapies, most have not. "Some have been able to come off but then have had to come on again," he said.


"I think there's great interest in [SCD]. I think it's a very big challenge to follow the diet," he said.

He more commonly recommends a Mediterranean-style diet with few processed foods and simple sugars and more fish than animal protein.

The authors acknowledge the limitations of the study, and Dr Suskind said in the news release that priorities for treatments will vary by the individual.

"SCD is another tool in our tool belt to help treat these patients. It may not be the best treatment option for everyone, but it is an effective treatment for those who wish to try a dietary therapy," he said.

The authors and Dr Brant have disclosed no relevant financial relationships.
From
http://www.medscape.com/viewarticle/873976?src=wnl_edit_tpal&uac=185734DZ
 
From
http://www.medscape.com/viewarticle/873976?src=wnl_edit_tpal&uac=185734DZ




IBD: Diet Improves Symptoms in Small Study
Marcia Frellick
January 04, 2017



Pilgrim this is the Seattle SCD diet

Unfortunately there were 12 kids
3 lost weight
2 couldn't handle it and dropped out

What they don't say until the very end
It that the kids could be on immunosuppressants or biologics
And only have started them before the diet started
As long as it wasn't with a month for immunosuppressants and 2 months for biologics

Given 6-mp and aza can take 3-4 months to be effective
And biologics like humira 3-5 months
I am not sure how the ridiculously small study can prove much of anything
About diet

The opening sentences make it seem like it was only diet used in these kids and no meds

Hopefully a better study will be designed if it's studied more
Thanks. I was wondering if the kids were on meds and which ones.
 
Top