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June 2014 study of SCD

This is a small study published in the Journal of Pediatric Gastroenterology and Nutrition, http://www.ncbi.nlm.nih.gov/pubmed/24897165

My husband is a lot better with medical journals than I am, especially where statistics are involved. Here's his interpretation:

Nine patients did the diet for 12 weeks. The average value of the PCDAI (Pediatric Crohn's Disease Activity Index) went from 21 to 8. So the average patient went into remission on the diet, and based on the standard error, only 16 percent of cases were not in remission. Given the overall number, that means 1 or 2 children did not go into remission on the diet. That, right there, is better than ... pretty much any other treatment I've seen. And that squares with what Elaine Gottschall said and with the other published studies (that 75% go into remission on the diet).

The Harvey-Bradshaw index went from just over 3 to 0.6. Again the average patient was not very sick at the start, but was fully in remission at 12 weeks.

Seven patient stayed on the diet beyond 12 weeks. (I'm guessing the two kids who didn't go into remission dropped, which is Gottschall's advice.) At 52 weeks, the Harvey-Bradshaw index averaged 0.1 In other words, the seven kids whom the diet helped, were all essentially free of symptoms at one year. That's damned good news. Based on what I recall from studying the literature, for children in mainstream therapy, the odds of remaining in remission for a year were under 50/50. Taking that at 50 percent, the odds of seven kids remaining in remission one year is like 7 "heads" in a row, or p < .01 (less than a 1-in-100 chance of seeing that merely by chance.)


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Thanks for posting.

It will be interesting to see if they do a proper scientific study.
So out of a whopping total of 9 children who continued on meds 7 improved, but only 2 had sustained mucosal healing. Many questions remain about this study.

1) what if meds were not continued. IOW, how do we know it wasn't the meds vs the diet, or a combo of both.

2) If 7 of 9 improved, why did only 2 show actual evidence of sustained mucosal healing? that is really the gold standard nowadays for success.

3) How old are the children? Are the survey results reliable in this age group? Are the parents involved in them filling out the survey?

There is no question SCD (and diet management in general) needs research. But that is about the only thing one can take away from this study. There are so many variables in this study otherwise.
I'd definitely like to read the full article but haven't found it yet.

Among other things, I'd like to know what evidence they used for the sustained mucosal healing or lack of evidence thereof. As a parent myself, I wonder if any of the parents refused to allow any more endoscopies!
The other thing, and this is just one stupid doc's opinion here, is that like any other condition, we cannot compare children to adults. Kids are not small adults when it comes to medicine, and vice versa. The adult immune system, adult organrs are vastly different than childrens'. Cancers which are deadly in adults (ALL for example) are highly curable in kids. Many kids can "outgrow" asthma- lend to the idea of an evolving immune system. Even simple things like strep throat often manifest differently.

No doubt there is something to SCD in the right population of IBD patients. But exactly which population, duration of the diet etc.... is still long from being answered.
This study involves the GI group my son's GI is in. They recruited in-office, I can't imagine then that the parents who signed up for the study knowing all that was required would then refuse an oscopy. Two of the docs listed as authors have seen my son in hospital during their in hospital rotation though they are not my son's GI. The group also has a nutritionist that we have seen, she is really excited about exclusive enteral nutrition and supplemental enteral nutrition. My son has done EN at 2700 calories a day plus food calorie intake.

I'm not sure that this study reveals anything more than in depth scientific research is needed. I agree there are too many variables in this study to draw any solid conclusions.
My son has been on SCD since May of 13 and did well for a year, but I think he ate too many sweet foods, honey and yogurt and a lot of fruit.
My son started the diet his 7th grad year and was strict until this year his 10th grade year.
I put all his blood work on an excel spreadsheet and was so happy to watch his numbers improve.
They did the pill camera to verify how the diet was healing his insides and there was improvements there as well.
He started off with his weight of 115 to current weight 164. This was even with playing travel ice hockey.
Everything I wrote just got erased so now I will give a short version of it. I believe in the scd diet but it has to be adjusted for those with constipation. Also, it is very important for anyone with auto immune decease to see an allergist. Often, we have allergies or food sensitive and do not know it. My son is allergic to apples, hazelnut, green grass and pollen. He was eating apple sauce and he was drinking smoothies made with this healthy green grass powder and in the mornings he would get up and could hardly talk. Now, he avoids those foods and he is much better. His allergies were causing a lot of inflammation. Another food that he is highly sensitive to is sugar (not in fruits so far) and regular oils. I read that regular oils for cooking cause inflammation and it is true in his case. He does add olive oils to salads and foods and it has been good for him. Eating specially healthy is so much work. He does much better only eating at home.
It's great that you were able to identify the foods that were bothering your son.

I wish allergists were better. Or I should say, allergists and their tests do not always identify problems, and I wish there were better tools at the doctors' disposal. My son has had allergy testing three different times, and it always says he isn't allergic to anything! We know empirically that he is very sensitive to some molds, and of course there are thousands of types of mold, and the tests can't possibly include all of them.