Vassar College, Paradigm Shifts, and Crohn’s Disease

April 15, 2012 9 comments

You can’t make this stuff up…so here goes:

In 1978 I was a junior at Vassar College. One of my favorite classes was “The History of Science” taught by James Challey. This was a high level seminar type class where about a dozen students sat around a table and had critical conversations about the books we were reading. The most important book we discussed in detail was The Structure of Scientific Revolutions (1962), by Thomas Kuhn. The core concept was the idea of Paradigm Shifts that have occurred marking the often rocky transition from one way of thinking about science to another. Key examples included the transitions from thinking that the world was flat…to round, that the earth was the center of our universe…to the sun. A modern example would be ulcers being caused not by stress, but by a bacterial infection. Deeply entrenched scientific thinking about the way the world actually works has been dead wrong before…and often.

These were interesting ideas and ways of thinking about the world that I had stuck somewhere in the back of my mind for decades. Then when my daughter was diagnosed with Crohn’s in 2004 and I read Elaine’s book, Breaking The Vicious Cycle….and learned that the medical standard of care for Crohn’s didn’t even consider diet all, I was conflicted. I wondered, could it be possible that Elaine was ushering in some kind of Paradigm Shift in medicine? Unfortunately, I couldn’t find much real scientific evidence at the time but her argument sounded logical…so we tried SCD, and it worked! From there I became an SCD evangelist, but much of it was on faith.

About 2 years ago I stumbled into the Paleo Diet world of Loren Cordain and Robb Wolf. Their diet plan was very similar to SCD, but their argument about why diet mattered was different. It was deeper. It was couched in the framework of evolutionary biology. The very idea that diet is a critical part of the evolution of humans and that key changes in diet since the agricultural revolution…and in the last 50 years, are the underpinnings for most chronic diseases was intriguing. Robb Wolf reminded us, with a great post he called “Framework Matters” that it was more than strange that modern medicine & nutrition is not viewed within the framework of evolutionary biology. He quoted Cordain who argueed:

“In mature and well-developed scientific disciplines there are universal paradigms that guide scientists to fruitful end points as they design their experiments and hypotheses. For instance, in cosmology (the study of the universe) the guiding paradigm is the “Big Bang” concept showing that the universe began with an enormous explosion and has been expanding ever since. In geology, the “Continental Drift” model established that all of the current continents at one time formed a continuous landmass that eventually drifted apart to form the present-day continents. These central concepts are not theories for each discipline, but rather are indisputable facts that serve as orientation points for all other inquiry within each discipline. Scientists do not know everything about the nature of the universe, but it is absolutely unquestionable that it has been and is expanding. This central knowledge then serves as a guiding template that allows scientists to make much more accurate and informed hypotheses about factors yet to be discovered.

The study of human nutrition remains an immature science because it lacks a universally acknowledged unifying paradigm (11). Without an overarching and guiding template, it is not surprising that there is such seeming chaos, disagreement and confusion in the discipline. The renowned Russian geneticist Theodosius Dobzhansky (1900-1975) said, “Nothing in biology makes sense except in the light of evolution” (12). Indeed, nothing in nutrition seems to make sense because most nutritionists have little or no formal training in evolutionary theory, much less human evolution. Nutritionists face the same problem as anyone who is not using an evolutionary model to evaluate biology: fragmented information and no coherent way to interpret the data.”

I was impressed. Not only in that concept of Paradigms discussed, but in holding up the framework of evolution as a guiding theory, it also calls into question the answers that come out of modern medicine that ignores it.  A plausible explanation of how and why modern medicine could be dead wrong about how chronic disease works…and how Elaine could have been right all along.

Then Robb Wolf introduced me/us to Alessio Fasano of UMaryland. For about a decade, Fasano, who focuses on Celiac disease, has been using the model of Celiac and the role of intestinal barrier function to explain the biologic door to not only Celiac, but virtually all chronic diseases. Fasano’s work is really blockbuster stuff. He makes his case using evolutionary biology as a key part of his framework…but he goes further. In his critical paper on Intestinal Barrier Function he reaches back to Kuhn and uses his language of paradigms to explain what is going on.

“Zonulin and Its Regulation of Intestinal Barrier Function: The Biological Door to Inflammation, Autoimmunity, and Cancer. — Together with the gut-associated lymphoid tissue and the neuroendocrine network, the intestinal epithelial barrier, with its intercellular tight junctions, controls the equilibrium between tolerance and immunity to non-self antigens.  When the finely tuned zonulin pathway is deregulated in genetically susceptible individuals, both intestinal and extraintestinal autoimmune, inflammatory, and neoplastic disorders can occur. This new paradigm subverts traditional theories underlying the development of these diseases and suggests that these processes can be arrested if the interplay between genes and environmental triggers is prevented by reestablishing the zonulin-dependent intestinal barrier function. This review is timely given the increased interest in the role of a “leaky gut” in the pathogenesis of several pathological conditions targeting both the intestine and extraintestinal organs.”

I knew with this study that we really were witnessing a true paradigm shift in the understanding of chronic disease. I knew that with this new line of research that I could be confident that the “standard of care” really is simply wrong and dangerous. And that I could be confident even when arguing with GIs about what is really going on and what to do about it. It really is amazing how much supporting research there is that explains the connections between intestinal barrier function and disease.

The next twist in the ongoing story is the fun part. We’ve been going through the college search process for our daughter for the last 2 years now. And last week, the decision was Vassar, class of 2016. When we visited Vassar last week she got to meet Jim Challey who is retiring next year – He’ll still be there for her Freshman year.  It turns out that Jim Challey was not only that professor that introduced me to the possibility of Paradigm Shifts, but he was a direct protege of Thomas Kuhn himself at Princeton. Like I said, you can’t make this stuff up.

2012 Boston Patient & Family IBD Symposium – Important Education and Missed Opportunity

March 19, 2012 10 comments

This Sunday I attended the CCFA 2012 Boston Patient & Family IBD Symposium at Babson College. It was a full house for a very professionally run education program about IBD. Although I was not able to go to every session, I did get a pretty good flavor. And while I did learn a few things, I couldn’t help but be struck by the huge missed opportunity. Here is a summary of what I heard:

  • There is some real awareness that most autoimmune diseases are somehow connected by genetic and environmental factors.
  • There is a recognition that microbiota/bacterial imbalance plays a significant role.
  • Smoking makes Crohn’s worse.
  • Those on Anti-TNF therapy have a 2.18 x increased risk of Non-Melanoma Skin Cancer, 6mp a 4.27 x and combined a 6.75 x increased risk.
  • Vitamin D deficiency is recognized as an important issue – but there was little discussion of how, why or what to do about it. But don’t go out in the sun if you are on immune suppression therapy!
  • Prednisone/Steroid therapy works to stop flares, but is to be avoided due to side effects.
  • 5-ASAs/Mesalamine has little or no benefit for Crohn’s disease.
  • Omega 3 fats can play a role in therapy.
  • NSAIDs make IBD worse (but no understanding of why)
  • One bright spot was the presentation by Dr. Matt Hand Director of Pediatric Integrative Medicine at NH’s Hospital for Children in Manchester. Dr. Hand gave a nice overview of Alternative therapies and he discussed the promising research in key anti inflammatory supplements like fish oil, boswellia and curcumin. And while he was certainly open to new ideas (quite refreshing), I don’t think he grasped the fundamental concepts that we’ve been discussing (particulary Fasanos work). A missed opportunity I hope to follow up with him on.

Unfortunately there was absolutely no mention or recognition of the role of intestinal barrier function and increased intestinal permeability in IBD. And there was a clear message sent that diet had nothing to do with the problem, or solution. Of course, there was no mention of LDN.

The basic approach was to tell folks to make sure they stayed on their medications. And there was alot of discussion about moving quickly to biologic drugs. There was quite a bit of discussion about risk/reward for these drugs, but the choices defined were “false-choices”. They positioned the choice as between going untreated and having a poor quality of life, risking emergency surgery and eventual disability due to the disease progressing, against the slightly elevated chances for getting some type of cancer years down the road. The increased cost of the drugs was meantioned.

On the whole I was very dissappointed and frustrated. I just don’t get why all the research that is being published now that explains what is really going on is being ignored. And what is worse, people going to these sessions are getting bad information. But it was important for me to go. There is no way I can make a difference in their educational programming if I don’t know what they are covering.

There is alot of work needed to be done.

Fasano’s Spectrum of Gluten-related disorders

March 11, 2012 Leave a comment

In February 2012, Alessio Fasano published a new study - Spectrum of gluten-related disorders: consensus on new nomenclature and classificationin it he and his team lay out the broad range of gluten related disorders, including Celiac(CD)/Autoimmune and Wheat Allergy (WA)/Allergic, but not autoimmune.  He also discusses at some length what he calls Gluten Sensitivity (GS) “The symptoms in GS may resemble those associated with CD but with a prevalence of extraintestinal symptoms, such as behavioral changes (depression, foggy-mind, headache), abdominal pain/diarrhea,  eczema, bone or joint pain, muscle cramps, leg numbness, weight loss, anemia and chronic fatigue.”

[GRAIN-0314]

Conclusions
“It is now becoming apparent that reactions to gluten are not limited to CD, rather we now appreciate the existence of a spectrum of gluten-related disorders. The high frequency and wide range of adverse reactions to gluten raise the question as to why this dietary protein is toxic for so many individuals in the world. One possible explanation is that the selection of wheat varieties with higher gluten content has been a continuous process during the last 10,000 years, with changes dictated more by technological rather than nutritional reasons.
Wheat varieties grown for thousands of years and mostly used for human nutrition up to the Middle Ages contain less quantities of the highly toxic 33-mer gluten peptide. Apparently the human organism is still largely vulnerable to the toxic effects of this protein complex, particularly due to a lack of adequate adaptation of the gastrointestinal and immunological responses.
Additionally, gluten is one of the most abundant and diffusely spread dietary components for most populations, particularly those of European origin.  All individuals, even those with a low degree of risk, are therefore susceptible to some form of gluten reaction during their life span. Therefore, it is not surprising that during the past 50 years we have witnessed an ‘epidemic’ of CD and the surging of new gluten-related disorders, including the most recently described GS.”

The point is that gluten is toxic…even if you don’t have Celiac Disease.  Fasano notes that Gluten Sensitivity may be at play in a wide variety of disorders including: eczema, Autism & Autism Spectrum Disorders, Neuropsychiatric disorders/Schizophrenia, IBS, Diabetes, MS and Dimentia to name a few.

Does it work?

February 22, 2012 42 comments

The short answer is – Yes!

Although it’s an experiment of 1 and admittedly not at all scientific, I thought it would make sense to report on the recent results from my daughters blood work. It turns out that the strategy we are following – borrowed heavily from the Core Strategy I outline in this blog –  is working.  While no plan is perfect, its nice to know that this one is safe and effective.  We set a goal about 18 months ago…to find a way to provide some diet flexibility beyond the strict SCD program that we had successfully implemented in the past. It does appear that the addition of LDN and key supplements has made some diet flexibility possible. I’m sure we’ll have to make adjustments over time, but we’re pretty pleased with the results!

Here is the plan:

  • Wheat/Gluten grain and mostly dairy free diet – potato & rice are well tolerated. (I’m sure there is some cheating going on, but not that much.)
  • LDN – 4.5mg capsules each night
  • Monthly B12 injections
  • Daily supplements: Vitamin D3 10,000 iu, Boswellia/5Loxin 150mg, Curcumin/BCM95 500mg, Krill Oil 1,000mg & Bacillus Coagulans (DuraFlora – 2 capsules)

Here are the blood results:

  • Vitamin D level – 25(OH)D = 79 (I think we are in “theraputic level” territory)
  • C-reactive protein (CRP) = .56 (is a protein found in the blood, the levels of which rise in response to inflammation) anything under 1 is considered a low level of inflammation.
  • The erythrocyte sedimentation rate (ESR), = 18 also called a sedimentation rate (SED) , is a common blood test  that is a non-specific measure of inflammation.  For women, anything under 20 is considered in the normal range.

Vitamin D and Crohn’s Disease

February 2, 2012 8 comments
Target Vitamin D Levels 25(OH)D
Dr. Jaquelyn McCandless 65 – 90
Robb Wolf 60 – 80
www.VitaminDCouncil.org 50 – 80
www.GrassRootsHealth.net 40 – 60
Vitamin D IBD Study 30 – 60

There is alot of talk about Vitamin D and its relationship to autoimmune disease and cancer. It appears that those with these diseases have very low levels of Vitamin D. And although its hard to tell which came first, Vitamin D deficiency or the disease, we know it plays an important role on a number of dimensions.

Genetic ExpressionResearch shows that (NOD2) gene insufficiency contributes to the development of the disease. Vitamin D signalling is a direct inducer of NOD2 expression arguing strongly that vitamin D deficiency plays a causative role in Crohn’s Disease.

Vitamin D plays a critical role in preventing and healing leaky-gut -  maintenance of the epithelial barrier integrity of the large intestine by vitamin D is critical in preventing IBD.  The VDR (vitamin D receptor)  is required for mucosal repair andVDR expression suggesting that Vitamin D is involved in the regulation of epithelial wound healing.

Vitamin D controls Zonulin - the molecule that is the glue of tight junctions in the gut lining. If you are deficient in D, the gates will stay open.

Vitamin D acts as an anti-inflammatory immunomodulator in IBD -Vitamin D downregulated Th1 (acting as a natural TNF-a suppressor) and upregulated Th2 responses (increased IL-4 anti-inflammatory cytokines). Th17 responses – a primary driver of  inflammation – were also downregulated.

Those with IBD are also prone to vitamin D intestinal malabsorption so we know that it is difficult to get enough. And that is the key question? How much Vitamin D is enough to help with healing? There are no clear answers but there are some good guidelines available.

Vitamin D

Test Your Vitamin D 25(OH)D Levels

Just as you would test you blood levels for key inflammation markers like CRP & ESR, you should be testing for Vitamin D or 25(OH)D. And while there is no clear theraputic range to target, the above chart gives some good guidance. Dr. Jaquelyn McCandless is a pioneer in treating Autism using LDN and diet. She also treats patients with IBD and suggests the highest target of 65 – 90. The above chart from Mercola is in agreement with her. Robb Wolf and the Vitamin D Council are pretty close in the 60 – 80 range.

How Much Vitamin D Do You Need?

 How much vitamin D3  (and yes you want D3) you supplement with – to get up to the target levels - depends on your situation. Where do you live? How much time do you spend in the sun? How much damage do you have to your ileum? As a result, everyone has to determine their own dosage based on their actual blood level results. For some that may mean 1,000 iu/day. Others may need 5,000 or 10,000 iu/day. Preliminary studies show that  high-dose Vitamin D3 Improves Clinical Activity in Crohn’s Disease.

What kind should I take?

Vitamin D is best assimilated when it is taken with fat, so the D3 you take should be in either an MCT oil or olive oil base.

I know that I’ve just scratched the surface on Vitamin D here. In addition to the Vitamin D Council and Grass Roots Health, the Vitamin D wiki is also a great resource – www.vitamindwiki.com for further research. There are also some interesting discussions on other supplements that support vitamin d such as magnesium, zinc and K2. Making sure you get your Vitamin D levels up to theraputic levels does not insure that you’ll be cured (I wish it was that easy), but it’s cheap, safe and easy to do. So don’t wait! Get your blood levels checked and catch some rays!

“Direct and indirect induction by 1,25-dihydroxyvitamin D3 of the NOD2/CARD15-beta defensin 2 innate pathway defective in Crohn’s disease” The Journal of Biological Chemistry, January, 2010 .

Vitamin D and gastrointestinal diseases: inflammatory bowel disease and colorectal cancerTheraputic Advances in Gastroenterol,  January, 2011

“US research confirms latitude variation in incidence of chronic digestive diseases.”  American College of Gastroenterology, October, 2011

Robb Wolf: Paleo & Autoimmune Disease

January 30, 2012 7 comments

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

CCFA: Removal from Community

January 24, 2012 45 comments

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 jspencer@ccfa.org

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.

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