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 classification – in 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.”


“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 52 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 10 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 46 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.

Categories: Uncategorized

Working with the CCFA

January 21, 2012 15 comments

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!

Categories: Uncategorized

IBD Pilot Study Using Diet based on SCD shows 100% Success Rate

January 13, 2012 39 comments

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