In August of 2011 I attended Robb Wolf’s final day-long Paleo Solution seminar. Even after reading his book, I must say that I was very impressed. Robb did a masterful job of explaining how putting diet into an evolutionary biology framework allows for a deeper understanding how diet impacts chronic diseases. It turns out that Robb has UC, and his whole journey into the Paleo diet was motivated by his desire to find a better way to treat his own autoimmune disease.
I found this video of Robb giving an overview and he covers it all, with a focus on autoimmune disease starting about 22 minutes in. He references Cordain, Fasano, Leaky-gut, and vitamin D. There is even a nice overview on the importance of omega 3:6 balance and its connection to inflammation that is often overlooked. Watch the video and also check out his blog at www.robbwolf.com
Well it finally happened, today I recieved my “removal from community” email from the CCFA (www.ccfacommunity.org) for breaking two of their Community Rules, including posting of “treatment specifics” and making “tasteless post”.
For those interested, the email came from Jackie Spencer email@example.com
I just checked, and they deleted all of my posts which for the most-part were links to the same types of information I have here on this blog.
I can’t say that I’m surprised. I knew that it was nearly impossible for me to make posts that were not “treatment specific”. And I’m sure there were those that felt threatened by my suggestions that questioned or contradicted doctor recommendations.
Kind of ironic right after my last post. I thought I was making progress. And it is a shame. I think there were at least a few people that actually got the message. Read the research. And got their lives back after reading some of those “treatment specific” and “tasteless posts”.
I do view this as a setback. The CCFA site had thousands of visitors and they made up most of the traffic for this blog…so I know there was interest.
If you do happen to visit their community, and someone needs a resource, please do send them here.
There are other online communities that are better and more open. Check out www.crohnsforum.com, they do a nice job.
For a longtime I’ve had real issues with the CCFA. They are supposed to help those with IBD through patient & doctor education and funding of research for better treatment. Yet they continue to ignore the mounting research that explains why diet is central to autoimmune disease, and they denied funding for LDN. Sometimes I wonder what their motivation really is.
But I’ve decided to take the high road. I have to assume that they have good intentions, and that the real problem is ignorance.
Yesterday I met with the woman in charge of educational programs for the NE chapter of the CCFA. My goal was to see if I can influence the patient and doctor education progams they run. Finally there is good science that explains what is going on with autoimmune disease…and all of it supports what we’ve been told for years starting with the SCDiet. So I brought it with me. Most of it is linked to here on this blog. She listened, and I think we’ve opened a real dialog.
I know this will be an uphill battle and although I hate waiting, I know I have to be patient and persistent. Most of their material for the programs they run come from the national organization so it won’t be easy for me to have much influence. If there is anyone that has connections high up in the CCFA please let me know. I’d love to arrange more dialog.
In the meantime, I know they just love having me in the audience for their education events. The next one is March 18th at Babson. I promise to behave myself!
It looks like the mainstream medical community may be finally realizing that diet is central to the cause and healing of IBD. Last May, the folks at UMass led by Barbara Olendzki published a pilot test using a diet largely based on SCD to treat IBD. Here is a link to a pdf showing the study results, and I’ve copied the abstract below. I’m sure it will take alot more to completely turn things around, but this is a major step forward. Even though this study is small, I’d say a 100% success rate is pretty good!
And here is a link to the most recent SCD Lifestyle post and podcast interview of one of the researchers that conducted the study http://scdlifestyle.com/2012/02/umass-ibd-diet-study-sees-success/ Kudos to Steve Wright for putting this together!
Background: Inflammatory Bowel Disease (IBD), which includes Crohn’s disease (CD) and ulcerative colitis (UC), are chronic non specific inflammatory conditions. Standard IBD treatment typically employs a combination of anti-inflammatory and immune suppressive medications; however, the pharmacological approach is not by itself curative. The Anti-Inflammatory Diet for IBD (IBD-AID), which is derived and augmented from The Specific Carbohydrate Diet (SCD), is a nutritional regimen that restricts the intake of complex carbohydrates such as refined sugar, gluten-based grains, and certain starches from the diet. These carbohydrates are thought to provide a substrate for pro-inflammatory bacteria. The second component of the diet involves the ingestion of pre- and probiotics to help restore an anti inflammatory environment.
Study Objective: To assess the efficacy and feasibility of the Anti –Inflammatory Diet (IBD-AID) intervention for the treatment of IBD.
Intervention: Patients were recruited from the UMMHC gastroenterology clinic upon referral from their gastroenterologist. They received individual instruction of the diet and its restrictions through 5 individual nutrition sessions over approximately a 6-10 month period. Support materials were provided. Cooking classes were also available to the patients.
Conclusion: This case series indicates the potential for the IBD-AID to be used as an adjunctive or alternative therapy for the treatment of IBD. Notably, 9 out of 11 patients were able to be managed without anti-TNF therapy, and 100% of the patients had their symptoms reduced. To make clear recommendations for its use in clinical practice, randomized trials are needed alongside strategies to improve acceptability and compliance with the IBD-AID.
Citation: Barbara C. Olendzki, Gioia Persuitte, Taryn Silverstein, Katherine Baldwin, David Cave, John K. Zawacki, Kanishka Bhattacharya, and Yunsheng Ma. “Pilot Testing a Novel Treatment for Inflammatory Bowel Disease” Clinical and Translational Science Research Retreat.. May. 2011. Available at: http://works.bepress.com/barbara_olendzki/46
Here is a blog post by Tender Foodie that includes a recent interview with Dr. Alessio Fasano and thought it was important enough to link to. I hope he doesn’t mind. What is critical here is that gluten has impacts on leaky-gut beyond celiac disease. If you have an autoimmune disease, grains are central to the problem.
How many forms of gluten reactions are there?
Dr. Fasano: There are 3 forms. Celiac Disease, and Gluten Sensitivity, and Gluten/Wheat Allergy – and there are four different types of wheat allergy that all behave differently.
What is behind all of these reactions?
Dr Fasano: Gliadin. Gliadin is one of the proteins found in gluten. When someone has a reaction, it’s because gliadin cross talks with our cells, causes confusion, and as a result, causes the small intestine to leak. Gliadin is a strange protein that our enzymes can’t break down from the amino acids (glutamine and proline) into elements small enough for us to digest. Our enzymes can only break down the gliadin into peptides. Peptides are too large to be absorbed properly through the small intestine. Our intestinal walls or gates, then, have to separate in order to let the larger peptide through. The immune system sees the peptide as an enemy and begins to attack. The difference is that in a normal person, the intestinal walls close back up, the small intestine becomes normal again, and the peptides remain in the intestinal tract and are simply excreted before the immune system notices them. In a person who reacts to gluten, the walls stay open as long as you are consuming gluten. How your body reacts (with a gluten sensitivity, wheat allergy or Celiac Disease) depends upon how long the gates stay open, the number of “enemies” let through and the number of soldiers that our immune system sends to defend our bodies. For someone with Celiac Disease, the soldiers get confused and start shooting at the intestinal walls.
That sounds like everyone is gluten intolerant in some way. Is that true? Everyone?
Dr Fasano: Yes. No one can properly digest gluten. We do not have the enzymes to break it down. It all depends upon how well our intestinal walls close after we ingest it and how our immune system reacts to it.
Leaky-gut and altered gut flora underly all autoimmune diseases. Here is a recent study that discusses the gut microbiota connection. Again, diet is central to the problem.
Gut Microbiota and Pediatric Disease — Published in Digestive Diseases, 12/12/2011
Background: Researchers have made every effort to assess the role of gut microbiota in pediatric diseases like inflammatory bowel disease (IBD), celiac disease, asthma, allergy, and autism. The leading hypothesis is that an altered microbial composition is present (other than the presence of a specific pathogen) and that it could be involved in the pathogenesis or progression of such disorders.
Methods: Cultural, molecular, metabolomic, and metagenomic approaches are trying to define the pediatric gut microbiota imbalances in different diseases.
Results and Conclusion: In pediatric IBD, a marked increase in aerobes and facultative anaerobes was found, along with an increase in Enterobacteriaceae members (Escherichia coli). In both pediatric IBD and celiac disease (Th1-mediated disorders), higher bacterial cell counts were observed, jointly with a general gain of biodiversity. A preponderance of Bacteroidetes and a parallel decrease of Firmicutes was also reported in IBD, celiac disease and autism. Contrarily, dietary changes due to Western lifestyles increase Firmicutes populations and lower short-chain fatty acids production, possibly exposing ‘developed’ children to the infectious challenge (Escherichia and Shigella spp.). Lactobacillus and Bifidobacterium species could be protective agents for atopic diseases, while Clostridia, Enterobacteriaceae, and staphylococci can be associated with an increased risk of such Th2-mediated disorders. In the brain-gut axis view, gut microbiota could also play a role in autism.