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Podcast, People, Primary Sclerosing Cholangitis, Nutrition...

December 2, 2018

Yesterday I spoke to Dr. Samir Kakodkar about the SCD and IBD. Below are some notes related to the conversation.

SCD Community

  • My personal experience with IBD started with desperation, then a bit of luck, and lots of support. (Nothing happens in a vacuum—although lots happens in the kitchen.)
  • Reflecting on the podcast call, there are many people, from family members and friends, participants on the old SCD LongIsland listserv (including Elaine Gottschall), and most recently Facebook groups, who have helped support me and others over the years. (For me, my partner has been the most steady support.)
    • Some of the “early” names that immediately come to mind: Rachel Turet, John Chalmers, Gay Bauer, Mik Aidt, Mike Simons.
    • I’ve talked to Pam Ferro, Lucy Rosset, Cathy Malone and Judy Herod for many, many hours over the years.
    • Most recently, the S.C.D.A. group, including Jeffrey Berger, Tammy Irish, and Sophia Hamrick has been a source of positive energy, organizing the SCDRocks conference.
  • The SCD community has been an integral part of helping people make dietary adjustments, offering emotional support, and being available to help others move IBD from the foreground to the background of their lives.
  • After learning what they need, some stay on forums for a while to help others out, others may come in and out over the years. (I fit in this latter category.)
  • If you’re trying the SCD, ask questions!

Primary Sclerosing Cholangitis (PSC) - A Little Bit of Hope

In the podcast, I mentioned that approximately 20 years ago I had an initial diagnosis of PSC, marked by elevated liver enzymes and a scheduled liver biopsy. My liver enzyme levels returned to normal using the SCD. My doctor had the blood tests redone both at the time of elevated liver enzymes as well as right before the scheduled biopsy, when they normalized. The biopsy was cancelled.

That said, I have had doubts over the years whether the PSC “going away” was a fluke or a one-off, if diet-mediated microbiome changes could help PSC in anyone else. (Years ago, I did talk to another person who had the same experience, with SCD helping PSC.)

What I wanted to point out in the podcast was a case study published this year, 2018. It discussed a 13-year-old girl with ulcerative colitis (UC) and PSC. Both diseases normalized with SCD—remission for the UC and liver enzymes back to normal.

The case can be found below. It’s from the Journal of Pediatric Gastroenterology and Nutrition titled:

PSC is a progressive disease. Statistically, “50% of symptomatic patients do not survive beyond 15 years from diagnosis” [boldface added], unless they have a liver transplant. According to the case study, “there is no effective medical therapy.” The authors of the case study suggest that changing the intestinal microbiome may be a way to treat PSC.

SCD: Nutritional Completeness

If you’re using the SCD, it’s important to check with a dietician about the nutritional completeness of your diet. All too often people get derailed by over-eating some foods (e.g. nut flour breads, etc) at the expense of others. Also, you may not be getting adequate vitamins and minerals. These nutrients are worth checking, even if you’ve been on the SCD for a while.

Here are some documents you can bring to your dietician and your GI:

Stages and Phases

There are no official “Stages of the SCD” and this concept can be confusing.

However, it is important to address food texture and levels of fiber. For example, if you are experiencing a flare, well-cooked, softer, and pureed foods may be best. (Talk to your doctor.)

Original “SCD Web Library” web site

Dr. Kakodkar mentioned this site briefly. It was started in 1996 by Mik Aidt who was soon joined by Mike Simons. Now archived, this site contained comprehensive SCD information.

(Mik, now living in Australia and happily married with 3 children, has been devoting his considerable energy to the issue of climate change )