In a concise, thoughtful, evidence-based podcast, Dr. Samir Kakodkar sums up current knowledge about the SCD (specific carbohydrate diet) and how it fits within the world of Crohn's disease and ulcerative colitis care.

He provides medical insight useful to both patients as well as healthcare providers, carefully pointing out that patient quality of life (QOL) is paramount. For patients, he emphasizes that you need to work with your doctor--IBD is not a DIY disease. Conversely, for physicians, he walks through his knowledge, studies he has carried out, and other published material on the SCD and how it relates to the microbiome.

In a world filled with all-or-none edicts, this nuanced perspective keeps to a common-sense middle ground. The goal is QOL, carefully using the tools available. (Most people on the SCD also use medicine.)

Have a listen! IBD, Diet and Medical Therapy -- The Middle Path: Samir Kakodkar, MD

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

• Podcast: Against the Grain

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!
  • Breaking the Vicious Cycle. SCD Community Public Group | Facebook
  • SCD Families Public Group | Facebook
    • Tali Guday!

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:

• Clinical Remission and Normalization of Laboratory Studies in a Patient With Ulcerative Colitis and Primary Sclerosing Cholangitis Using Dietary Therapy.

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:

• IBD & SCD: When, How and Why to Supplement
  • Cathy Malone works as a dietician at for a pediatric GI unit for Massachusetts General Hospital. Her presentation above reviews key nutrients to have checked in Crohn’s Disease and ulcerative colitis.
• Nutritional Adequacy of the Specific Carbohydrate Diet in Pediatric Inflammatory Bowel Disease
  • This publication, from the Journal of Pediatric Gastroenterology and Nutrition, shows that the SCD can be nutritionally complete but also where patients may need supplements or adjustments to attain adequate nutrient levels.

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.

• SCD Web Library

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

The SCDRocks conference was organized around the use of diet to help manage Crohn’s disease and ulcerative colitis.

If you or anyone you know has Crohn's disease or ulcerative colitis* and are anywhere near eastern Massachusetts (Bristol Community College in Fall River), make it a priority to get to the SCDRocks conference on October 6th and 7th. (* or celiac disease or autism with GI symptoms)

The speakers include an amazing group of healthcare practitioners. The gastroenterologists and dietician below work at nationally ranked hospitals and are focused on patient quality of life rather than one or another "right" method--often treatments include medicine as well as diet and other therapies. They have no financial interests in any service or product related to the conference.

If this conference existed when I was younger, it would have saved 7 years of misery--seriously. Here are some more details on the speakers:

Dr. David Suskind - Director of Gastroenterology at Seattle Children’s Hospital

Through Dr. Suskind's diligent research and positive clinical results, the Seattle Children’s Hospital now offers dietary treatment to IBD patients, working with a team including dieticians. Dr. Suskind has published several studies on the effects of the SCD on IBD symptoms and the microbiome, as well as completing work with microbial fecal transplants. He is beloved by IBD patients and their parents. We're lucky that he is able to fly in for a day.

For his full studies, look for "Suskind" on this page: medical journal articles

The Nutrition in Immune Balance (NiMBAL) site details some of the work by Dr. Suskind and his colleagues: www.nimbal.org

Dr. Josua Korzenik - Director of the Crohn's & Colitis Center, Brigham and Women's Hospital (BWH)

At BWH, under Dr. Korzenik's leadership, the Crohn's & Colitis Center focuses on individualized care and patient goals, offering not only medication but nutritional services and even mindfulness-based stress reduction programs groups with other IBD patients. He has authored studies on fecal microbial transplants for Crohn's disease and their team is always evaluating potential treatments. Prepare to learn about the microbiome!

Dr. Samir Kakodkar - Assistant Professor, Rush University Medical Center

Dr. Kakodkar recently completed both a 3-year gastroenterology fellowship a 1-year advanced fellowship in IBD. His formal training as a gastroenterologist as well as an informed researcher of complementary therapies places him in a unique position to discuss IBD and a broad range of treatments with a critical eye. He has published several papers including Diet as a Therapeutic Option for Adult Inflammatory Bowel Disease. In addition, he started a podcast about complementary IBD treatments.

For his studies, look for "Kakodkar" on this page: medical journal articles

Cathy Malone, MS, RD, LDN - Pediatric Dietitian, Massachusetts General Hospital

During decades of experience working with a pediatric GI department as well as over a ten years of using the SCD in clincial practice, Ms. Malone has a practiced eye in assessing patient diets for nutritional adequacy and working with families to figure out sustainable plans. Familar with the latest research she is well-versed in the nutrient-specific needs of IBD patients.

Only 9 Days left! I will post more about the speakers soon, including one who used to bring her homemade SCD lunch to the White House while working as an intern. For the impatient, go see them now!

(Disclosure: I am assisting with the SCDRocks conference organizing as an unpaid volunteer. I worked on an SCD cookbook published in 2008. More recently, I worked with Pamela Ferro, R.N. on a book about the SCD and Autism--copies of which will be given to conference attendees.)

Mom’s bakery venture blossomed from mission to help her daughter

Watch the Today show this Friday, September 28th!

Stacey Schlaman of Liberated Specialty Foods will be on the Today show with Kathie Lee and Hoda to talk about her company as well as the SCD!

Short timeline:

• [Alabama, several years ]: Stacey Schlaman's daughter suffers from celiac disease and psoriasis
• In researching options Stacey learns about the SCD as well as GAPS*. Using diet, Stacey's daughter's health improves dramatically.
• In 2015, Stacey is both motivated by her daughter's improvements and overwhelmed by the time she's spending making food.
• To work with these feelings, she turns inward. She thinks of all the other families in a similar situation. She wants to make food for them.
• Following her instincts, she and her husband purchase an old church in the Alabama countryside, outside of their town.
• Stacey converts the church into a commercial kitchen. Liberated Specialty Foods is born.
• People love they food! They want more! They want this food in their stores.
• Groceries, including Whole Foods and Sprouts, start carrying Liberated foods in states including Alabama, Florida, Georgia, Illinois, Indiana, Michigan, North Carolina, South Carolina and Tennessee.
• This Thursday, Stacey and Liberated Specialty Foods will be on the Today morning show.
• On the weekend of October 6th and 7th, Stacey will also be at the SCD Rocks conference!

(* GAPS is pretty much the equivalent of SCD.)

In the beginning of August, the Seattle Children's hospital began posting a video series titled: SCDelicious: Recipes for the Specific Carbohydrate Diet.

Watch as Maddie, who uses the SCD to for her IBD, creates a tasty cake with Dr. David Suskind--her gastroenterologist!

If you are on the east coast, hear Dr. Suskind speak at the SCDRocks conference on October 6th!

On Saturday, April 9th, from 8am to 3:30pm, the Seattle Children's Hospital will be providing healthcare providers with their most recent information about treating IBD (Crohn's and ulcerative colitis) with nutrition--including their extensive work with the SCD.   Registration is here:

https://www.regonline.com/Register/Checkin.aspx?EventID=1797706

Please join us for a Book-Reading and Cooking Demonstration from the book The SCD For Autism & ADHD written by Raman Prasad & Pamela Ferro. This event will take place in downtown Boston at an established local venue – the Trident Booksellers & Cafe. Kids welcome!

Thursday, March 31, 2016 • 7pm

Trident Booksellers & Café
338 Newbury Street • Boston, MA 02115
617-267-8688 • tridentbookscafe.com
https://www.facebook.com/events/1709990282589257/

What's The Gut Got To Do With It: Dietary Interventions & Autism
A Book-Reading with Raman Prasad
SCD Cooking Demonstration with Nilou Moochhala

Find out how dietary change using this grain-free, dairy-free, soy-free, and sugar-free diet can decrease inflammation and alter the gut microbiome. The SCD has not only been used for serious digestive issues such as IBD and Crohn’s, but also for conditions such as autism, ADHD, anxiety, and mood disorders. We’ll discuss current relevant research and past history involving use of this diet.

Come meet the authors & sample some delicious treats!

A week ago, we headed out to our favorite local gourmet pizza place that allows us to bring our own almond-flour crust for "pizza-ing."

Over the years, we have been perfecting the thickness and texture of the crust so that it can work in their oven – along with the other farm-to-table ingredients they add on top.

On this visit, instead of homemade crusts, we brought two crusts from Liberated Specialty Foods* (formerly Nourish Bakery), and were lucky enough to carry home some leftovers - one crust baked to perfection with peppers, mushrooms, and onions – and the other with SCD-safe chorizo - all topped with delicious cheddar cheese! 

(* I'm actually ordering more crusts from them this week.)

(Conflicts of interest: None:)

A few weeks ago, we posted about a new SCD-friendly bakery called Nourish Bakery. We wanted to update you to let you know the name of this bakery has been changed to Liberated Specialty Foods. You can now visit them at liberatedspecialtyfoods.com

SCD author Raman Prasad and nutritionist Cathy Malone (Massachusetts General Hospital) will present clinical and patient perspectives on the use of the Specific Carbohydrate Diet (SCD) for inflammatory bowel disease. This information is also applicable to IBS and celiac disease. 

Title: Calming Digestive Issues Through Diet

When: Saturday, October 24, 2015
Time: 2-3:30pm
Where: National Park Visitors Center, Corson Building, New Bedford, MA

Sponsored by: The Marion Institute
Event Type: Workshop, followed by book-signing

For more information, you can visit The Marion Institute's Connecting for Change Conference site.