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

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.

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  1. venus
    March 20, 2012 at 9:18 am

    Thank you for attending and reporting on what you heard and saw. I too, have gone to those type of seminars here in michigan, only to dissapointed too!!! Hopefully, people start listening from a different perspective soon!

  2. March 20, 2012 at 9:41 am

    Alan, have you looked into some Search Engine Optimization for this site? There are probably more web-savvy readers here than I am, but I wonder if you could ramp up the SEO to make crohnsdad.com appear higher in google searches. If it did, I’d bet it would be astonishing how quickly the word would spread.

    If it comes down to it, don’t be afraid to ask for some donations! It is not an overstatement to say that this site is part of a few key resources that are responbsible for literally saving my life. I am sure there are others that feel the same.

    I had originally written a longer comment about my own experience (albeit 10 years ago) with the CCFA, but I can sum it up briefly: I don’t think you are going to effect significant change from working within the organization (and I don’t think that’s necessarily a bad thing). It is time for a paradigm shift, and it seems like it is already happening. I would take inspiration from everything that Robb Wolf has done / is doing, and just keep hammering the message that is backed by good science. Of course Fasano is the point man in all of this, and hopefully he’s got some proteges waiting in the wings!

    Keep up the incredible work! Let me know if there’s anything I can do to help.

    -Grayson

    • March 20, 2012 at 12:03 pm

      Grayson, I know I have alot to learn about SEO and welcome all the help I can get. I have been using tags and it seems like most of the traffic is actually coming from google. As for working with the CCFA, I don’t have high expectations, but they do have the audience. I’ve actually met with the educational manager for the NE Chapter and found her to be open. Its worth a shot.

      And an interesting side note on Fasano and his work. Clearly his work is the point of the spear that will drive this paradigm shift (he actually uses that language – love it) but outside of his published work, he is very conservative. In a recent interview about Gluten Free diets he essentially agreed with those that think its all a fad and most people – unless they have Celiac – are wasting their money. He made these statements at the same time he was publishing the paper I reference that clearly calls Gluten toxic for most humans. There must be huge politics around his work.

  3. Heidi
    March 20, 2012 at 11:40 pm

    Thank you for the update! Much appreciated!

  4. Shannon
    March 29, 2012 at 1:18 pm

    This may be a silly question but from what I have read Boswellia is an effective TNF reducer so is it then included in the statement that “Those on Anti-TNF therapy have a 2.18 x increased risk of Non-Melanoma Skin Cancer”? hanks for your help, your blog has been helpful to me as I have been diagnosed for one year and am trying why I can before jumping on the Imuran boat that my doctor would like me to be on.

    Shannon

    • March 29, 2012 at 1:37 pm

      Shannon,

      Unfortunately I don’t know enough to explain the difference. But as I understand it, Boswellia & Curcumin both act as natural anti-TNF therapy and for some reason, they do it in a non-toxic way. Curcumin for example has strong anti-cancer properties, its a key ingredient in Coltect, an Israeli drug being used for treatment of Colorectal Cancer. Please keep in mind though that the effects of both Boswellia & Curcumin are much milder than drugs and should be part of your solution along with diet and hopefully LDN for example.

      • Shannon
        March 29, 2012 at 2:19 pm

        Thanks so much for the encouragement, sometimes it just feels easier to give in than the uphill battle of all the trial & research on your own. I have commonly seen dosage for Boswellia in the 1200-1500 range and I see that your daughter’s dose is only 150. How did you decide on that number? Thanks for you time!

        Shannon

      • March 29, 2012 at 2:44 pm

        We’re using the AKBA/5Loxin form that was used in the clinical trials. Its about 10x or more potent than the standard stuff. http://www.ncbi.nlm.nih.gov/pubmed/11215357 & http://www.ncbi.nlm.nih.gov/pubmed/11355324

  5. April 2, 2012 at 6:36 pm

    I am impressed by your discussion of IBD and the lack of recognition to the importance of diet in modulating mucosal immunity. Feel free to check out my website at http://www.kahanamd.com and get in touch via email. I’m happy to discuss my experience with medical nutrition in IBD and to help out if possible.
    Best,
    Dr. Kahana

    • April 2, 2012 at 9:21 pm

      Dr. Kahana — Thanks for you support and I would very much like to open a dialog. I did take some time to look at your site and watch your videos. I am impressed at the progress that you’ve made in understanding the connection between diet and autoimmune disease and I hope that I can help you with your journey. You are almost there! Please do take some time and take a look at the research links that I’ve put together. When you combine the work being done by the paleo crowd (Cordain & Wolf) and Fasano, it paints the clear picture that intestinal barrier function is at the core of the problem. We know from research, and experience that specific carbohydrates(FODMAP), proteins (prolamins), and fats (omega 6) directly damage the gut lining, increase intestinal permeability and drive dysbiosis. I am concerned about some of your positions – allowing grains such as wheat, corn & soy (a bad idea), as well as allowing, but cautioning the consumption of pastured meat and coconut oil due to saturated fat. The fat in coconut oil, pastured meats/marrow bones, and pastured butter is the core of what drives healing of the gut lining and the immune system.

      One of my goals is to bring this research to the CCFA and help them to change their educational programs. I would appreciate any help you can provide toward that end. I look forward to creating a dialog and working with you.

      Best,

      Alan

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