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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.

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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.

The Core Strategy

September 20, 2011 64 comments

My approach to dealing with autoimmune disease in general and Crohn’s specifically is very eclectic. There is no cure but there certainly are safe, effective and affordable strategies that will let most people live normal lives.

Wordle: crohn's dad
There is finally science that explains what is going on with these diseases. The core problem is in the functioning of the gut lining or leaky-gut where the gut lining is actually leaking undigested proteins into the bloodstream, kicking off an inflammatory response. The two key factors that create leaky-gut are the direct action of prolamines/gluten/lectins in grains & legumes, as well as the omega 6 fats in seed/grain oils — along with dysbiosis in the gut, where complex carbohydrates & fructans are poorly digested, ferment, and feed the growth of pathogenic bacteria.

leaky-gut-inflammation-cycle

So now we have a mess that needs to be unraveled. Here is the basic strategy:

  • Stop eating the foods that cause leaky-gut
  • Stop eating the foods that feed pathogenic bacteria
  • Supplement to kill pathogenic bacteria and replenish good bacteria
  • Supplement to reduce inflammation and heal leaky-gut

And here are the tactics:

  • Diet – The most important component – 75% – is diet.  Eliminate all processed sugar, grains, legumes, and dairy. Although grains are the enemy, it’s also important to reduce high omega 6 fats and fructose. So what do you eat? Meats (hopefully grass-fed/pastured animals and wild caught seafood), Vegetables, Fruits and Nuts (and Tubers after some healing). Great diets for this include: SCD or Specific Carbohydrate Diet, GAPS or Gut and Psychology Syndrome Diet, and Paleo. Both SCD and GAPS are specifically designed for autoimmune disease and offer an intro phase and process for healing. Paleo doesn’t offer a process, but I’m partial to their evlolutionary biology approach to the world.  Here is a PDF that outlines a solid approach. It combines the best of SCD/GAP with its low FODMAP strategy, all within a Paleo foundation.
  • LDN – For many, diet is enough, but for most diet needs to be combined with LDN and key supplements.The only drug that makes sense to me is LDN or Low Dose Naltrexone. LDN is safe, effective and affordable. Naltrexone has been around for over 30 years and is FDA approved, but LDN for Crohn’s would need to be prescribed “off-label” or purchased directly from an online pharmacy. LDN works by tricking your body into producing 3 times the amount of endorphins it normally would. Endorphins perform a critical function that is profoundly important for the proper functioning of the immune system. The result is reduced inflammation, and demonstrated healing of the gut lining. LDN works best when combined with a gluten, soy, casein restricted diet because these foods actually compete for the opioid receptors that LDN works on.
  • Supplements– Athough you can go crazy with supplements, there are a core that have been shown to be effective. Few of them do much without the foundation of the right diet, but when combined, they can be very helpful:

D3 Make sure your blood levels are between 60 – 80. For most, this might require supplementing with 5,000 or 10,000 iu’s per day. There are clinical trials going on right now at Penn State for vitamin D and Crohn’s. Here is a great resource for vitamin D.

B12 Shots are critical for anyone with a damaged ileum. They are great for dealing with fatigue.

Boswellia & Curcumin are both great, natural anti inflammatories with small clinical trials that show that they are as effective as mesalamine without any of the side effects. Take boswellia in 5Loxin form and take curcumin in BCM-95 form.

Probiotics – There are some great probiotics that can help crowd out pathogenic bacteria and re-populate the gut with beneficial bacteria. One of the best ways is to ferment your own yogurt or vegetables. Or you can buy probiotics. The 3 strains that have some clinical trials to back them are S. Boulardii, VSL#3 and Mutaflor. S. Boulardii is affordable, available and works great for diarrhea, candida and c. diff. I’m partial to Mutaflor, but it is expensive, and unavailable in the US.

Leaky-Gut Healers – There are a number of interesting supplements that either aid digestion or directly help with the healing of the gut lining: GAPS bone broth or gelatinBetaine hcl with pepsin has multiple benefits with GERD, CRP/homocysteine, and killing pathogenic bacteria. L. Glutamine,  Zinc Carnosine, Colostrum/Proline Rich Polypeptides (PRP) and Coconut Oil.

There are other strategies, but this is a great start. Follow the links, do some research. Share this with your doctor. And get started. You can get your life back. Let me know how it goes!

Alan