2012 Boston Patient & Family IBD Symposium – Important Education and Missed Opportunity
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.
Does it work?
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
| 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 Expression – Research 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.
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 cancer” Theraputic 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
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
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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