Update from Laura

April 1, 2013 16 comments

Hi all!

It’s been an incredibly long time since I have said anything here, and I’ve been doing a pretty poor job of responding to any of you that have messaged me personally. Sorry for that, but I just don’t know what to say usually and I don’t think I’d be of much help.

I came here tonight after somehow ending up on my father’s Facebook account. Facebook has this (I think new) feature of showing ALL of a person’s activities (maybe only available to themselves?) and I found myself seeing exactly all of my dad’s previous Facebook activity. I scrolled through all the birthday messages people left him and that got me a bit emotional seeing all the kind words from people he helped and from friends. Then I went a little farther down to find this:

Screen Shot 2013-04-01 at 12.24.32 AM

 

It might not look like much to you, or to anyone at first. But look close: July 8th, at 7:15 am. That’s in the morning before he went on his bike ride. This photo is just a silly picture my friend took of me the night before at a candy store down on the cape. If you click on the photo, he’s the ONLY one that liked it. He liked it only hours before he passed away on that bike ride. That’s the ONLY thing he did on Facebook that morning, according to Facebook’s records. He didn’t answer any messages, post on any groups. He just liked a photo my friend posted of me from the night before. We hadn’t even spoken the night before.

I’m not quite sure why I’m posting this here. It made me really emotional and thought it might be worth sharing. I don’t know really. I guess I’ll give you guys a real update from me though while I’m here.

I only have a few weeks left in the semester here at Vassar College. It has been an amazing year and I am so glad I am studying in the same place that my dad studied decades ago. Often when I am walking around campus by myself I wonder where his favorite places were, whether he ever ate at the dining hall or if he only ate in his apartment, if I sit in the same seat he did in any of the buildings…all kinds of things. I can feel him here with me sometimes. He was so happy I chose his alma mater, I can’t even describe it. And it’s definitely the right place for me. I have made amazing friends, taken the best classes, and just had an overall awesome time.

As for my health, I am doing pretty well. While home over christmas break I had an appointment with my doctor, but upon arrival at the office after a two hour drive, the receptionist proceeded to tell me that I didn’t have an appointment for that day. As you might expect, I broke down and didn’t have the best day. I did see a doctor, but not mine. I am not a fan of things being out of my control in general, and in this case something out of my control was completely messed up by someone else. All I wanted to do was scream at the receptionist and barge into my doctor’s office and meet with him. I wanted someone to blame for such a colossal failure, but there was no one to blame. I had vivid memories of being there in July and making a follow up appointment for six months later. This time I am not throwing that appointment card away and calling ahead of time to confirm. Since then I have only had troubles with this doctors’ office. They don’t answer my messages, they never answer their phones in general, and they have been very irresponsible with my allergy serums. Last week they were supposed to be delivered to my pediatrician’s office at home. I had someone from school and home call to make sure this happened. Of course, those serums were never delivered and I missed a week of injections. The nurse on the phone assured me that missing a week would not throw off my course of treatment, but I informed her that was not what I wanted to hear. The office messed up; it would be fine if I chose to go on vacation and miss a week, but they were the ones that screwed up. They did promptly send them to school on monday so I got my injections on tuesday, but I am still very upset with them. Oh and those messages I left that they haven’t responded to? Prescription requests. I haven’t had the Rifaximin I was on since starting school since sometime in January when I ran out. I can’t order it without a prescription like my dad did in the summer, and my doctor’s office hasn’t fulfilled my request for one. Yes, it is an extra prescription that isn’t entirely necessary, but it was helping and I really want it back. I will try calling again soon but, as I told the ladies on the phone at the office, the only reason I am not taking my business somewhere else is because I love my doctor so much. He is worth jumping through hoops and driving two hours and taking a whole day to see him.

Besides missing the Rifaximin, I am doing well. The doctor I did see in January told me to take an iron supplement as my iron levels were on the very low range of normal. I think I reacted badly to the supplement’s recommended dose of twice a day, and have been taking it once a day without any troubles. The allergy shots are going well and I think might even be making a dent in my horrible allergies. The B12 injections are AMAZING! I wish I could manage with health services here to get them twice a week, but once a week does work to keep me awake from 8am until midnight or so. I can pretty much function like a normal college student.

I have a good friend (he lives across the hall from me) here who is also gluten-free, and we work together to make sure we both eat right and aren’t just having salads for every meal. The dining service here isn’t the worst possible, and I am coming to appreciate the (nearly) constant supply of Udi’s bread.

While home for christmas my mother told me that she had heard from a friend that one of my friends was diagnosed with Crohn’s. I knew this friend was sick, but had no idea he was going through what I already had. She pushed me to talk to him and help him as best as I could. You know, your father would want you to help your friend; he helped total strangers. I finally worked up the confidence to send him a message (I wasn’t 100% sure my mom had correct information about his diagnoses) and it turned out to be a great decision. He really received my story and advice well. However, he is having bigger medical issues than just gastrointestinal so I haven’t spoken to him much lately. Hopefully when we are both home this summer I can spend time with him and help some more.

Well, it’s getting late and I want to get up at 9am so I can have breakfast before my 10:30 linear algebra class. I have no clue who will read this but thanks if you did. It’s pretty much a long rant, but I needed to get all of this out. It feels a lot better now. Maybe I’ll try and do this more often. Feedback on what kinds of things you want to hear about would help. I don’t have the time or energy to do the research my dad did. Obviously that is all important to me, but as a college student taking five demanding classes, I can’t be doing extra research papers (basically what he was doing here) on the side all the time.

Goodnight world [:

Categories: Uncategorized

Butter & Bones: The Healing Power of CLA

July 11, 2012 16 comments

So last night when I “hacked” into my dad’s WordPress account to write my post, I saw that he had an unpublished draft here. I will leave all the links and photos he wanted you all to see, but unfortunately his synthesis and commentary never made it on here. I can tell it’s all copied and pasted from other sites.

Wordle: crohn's dad

This wordle above might seem familiar (his wallpaper). I actually helped him make it the other day. We were sitting on the couch, watching Le Tour De France (it’s always on in our house, every July), and he asked me to help him with his Facebook page. He didn’t really finish the page, but I’ll deal with that later. He couldn’t figure out how to get a good profile and cover photo for this page, and he didn’t want to publish it until he had. I got a good profile picture, which is actually the one I sent off this morning to be in his obituaries online and in the papers. Then I wanted to make him a cool cover photo, and thought of doing a wordle. Well, here it is, and I think it’s fantastic. He loved it so much he’d been putting it everywhere. I hope you all enjoy it.

Yeah, so all my dad got to here was posting a bunch of links. He never even made a point about the Butter and Bones and CLA, although I know from what he talked about that those are all really fantastic things. Our CSA share of meat is ready on Saturday and I don’t know who will go get that, but it sure contains the right bones to make yummy bone broth. I actually think we have some frozen bits of broth ice cubes and things in the freezer.

Here are the links he wanted everyone to see but never got to explain. He was writing this on July 2nd at 2:16, when he definitely was at work….hah typical. Please read these and enjoy:

-Total US Population – 311.6 million http://quickfacts.census.gov/qfd/states/00000.html

-IBD Stats – 1.4 million http://www.cdc.gov/ibd/ (only .4%)

-AARDA estimates up to 50 million Americans have an AD.  http://www.aarda.org/aarda_facts.php  (only 16%)

-Cancer affects up to 12.6 million http://seer.cancer.gov/faststats/selections.php?#Output

-One in four adults—approximately 57.7 million Americans—experience a mental health disorder in a given year. One in 17 lives with a serious mental illness such as schizophrenia, major depression or bipolar disorder 1 and about one in 10 children live with a serious mental or emotional disorder. http://www.nami.org/Template.cfm?Section=About_Mental_Illness&Template=/ContentManagement/ContentDisplay.cfm&ContentID=53155

-An estimated 82.6 million American adults (1 in 3) have 1 or more types of CVD

http://www.heart.org/idc/groups/heart-public/@wcm/@sop/@smd/documents/downloadable/ucm_319585.pdf

-In 2008, 18.3 million Americans had physician-diagnosed diabetes
-Approximately 186,000 people <20 years of age have diabetes
-An estimated 7.1 million Americans have undiagnosed diabetes
-An estimated 81.5 million Americans have pre-diabetes

-The estimated prevalence of overweight and obesity in US adults  is 149.3 million and Among children 2 to 19 years of age, 23.6  are overweight and obese. http://circ.ahajournals.org/content/125/1/e2.full.pdf+html?sid=56ab93a1-89a8-40eb-a4d0-762b8feb77c6

-Circulating zonulin, a marker of intestinal permeability, is increased in association with obesity-associated insulin resistance. http://www.ncbi.nlm.nih.gov/pubmed/22629362

-Obesity, Heart Disease, Diabetes, Cancer & Autoimmune disease all share a connected inflammatory process. http://chriskresser.com/the-autoimmune-inflammatory-model-of-diabesity

Obesity has been associated with increased intestinal permeability and absorption [1]. Obesity is correlated with dramatic
increases in intestinal absorptive capacity by increasing in amounts of absorptive mucosa.

Intestinal permeability regulates molecular trafficking between the intestinal lumen and the submucosa, leading to either
tolerance or immunity to non–self-antigens [3,4]. The intercellular tight junctions (TJs) tightly regulate this paracellular antigen
trafficking. TJs are appreciated to be extremely dynamic structures operative in several key functions of the intestinal epithelium
under both physiological and pathological circumstances [5]. Persistent high circulating levels of inflammatory cytokines, which
are often observed in obese subjects, may be an important contributor to intestinal barrier dysfunction by altering structure
and localization of TJs

Inflammation, a Link between Obesity and Cardiovascular Disease http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2929614/

http://www.ncbi.nlm.nih.gov/pubmed/22722429

-Autoimmune – 50m
-Diabetes – 18.3m
-Undiagnosed & pre-diabetes – 88.6m
-Heart Disease – 82.6m
-Cancer – 12.6m
-Mental Illness – 57.7m

309.8 million

So my dad sent me these last few statistics on Facebook as he was writing it, and said: “But there are only 311 million in the US – Clearly this means that some people have multiple disease, and some people have none. Any suggestions from the math world?” He loved getting me involved in these things, although -regrettably-, I usually laughed him off and ignored him. I responded that “a whole bunch of those are overlaps, i’m sure. this is a statistics-type question, not my strong suit”, which is true. I’ve never taken a statistics class, I’m a calculus girl.

I’m doing better today, but it’s still not real and surely not easy. I will write again soon. Thank you all so so so so so much for the messages here and on Facebook. My family appreciates it, and I know I will personally benefit from all your advice. I can really see now how many people he touched and how much they all appreciated my dad.

I added this to the last post, but I don’t know if you all receive notifications about updates, so here’s the information from the online obituaries if any of you are local or interested or just want to know: Obituaries: Boston GlobeFuneral Home, Long Island

Thanks again, I’ll be back soon

Love, Laura Schachter

Categories: Uncategorized

“Only the Good Die Young”

July 9, 2012 67 comments

Hello All-

This is Alan’s daughter, Laura- the one with Crohn’s and his inspiration for everything he did here and in all the communities in which he helped so many people. I am typing through the tears to tell you that my father- the reason I am alive, the reason I am healthy, and the most important man in my life- passed away suddenly Sunday morning July 8th, 2012.

My dad was out on a bike ride with his two best friends, Harvey and Jeff, and apparently had a massive heart attack that killed him instantly.

My grandfather, his father, died of the same thing when he was 51, although he had smoked his whole life and not eaten healthfully at all. My father spent the majority of his life dedicated to not succumbing to this same fate, doing everything in his power to prolong his life and be around for me and my sisters and my mom. My dad was just shy of his 55th birthday- August 12th.

I’m not sure what I’m going to do with this blog. I really don’t know all about this stuff- I am not even sure what pills I’m supposed to be taking out of the cabinet (I was going to learn this summer before I went off to College at Vassar). If you all could send me in the right directions and help me continue his legacy, I would love that.

This is all so surreal for me. Every time I stop crying and my family and friends cheer me up, I completely forget what is going on. I can’t believe he is gone.

I will try and check this regularly along with his Facebook, but I am Laura Schachter on Facebook if you’d like to talk to me personally.

My whole life just turned upside down.

Obituaries: Boston GlobeFuneral HomeLong Island

Categories: Uncategorized

Framework Matters: Study Links for Safe & Effective Crohn’s Strategies

June 5, 2012 8 comments

This post is really a reference guide that includes an outline and framework for thinking about Crohn’s strategies in a differnent way, along with links to a series of studies that go into depth about each area. This is a good place to start research, and a good resource to share with your doctor.

 
Nothing in biology (nutrition or medicine) makes sense except in the light of evolution. Dr. Loren Cordain

Intestinal Barrier Function & Leaky Gut:

These studies provide the framework for all the rest. Essentially all modern diseases of inflammation can be linked to a series of mismatches between our genes and environmental factors. The origin of this inflammation starts in the gut with a breakdown in intestinal barrier function.

  • The Western diet and lifestyle and diseases of civilization: Cordain, Research Reports in Clinical Cardiology: 2011 March
  • Mechanisms of disease: the role of intestinal barrier function in the pathogenesis of gastrointestinal autoimmune diseases. Fasano Nat Clin Pract Gastroenterol Hepatol. 2005 Sep
    Zonulin and Its Regulation of Intestinal Barrier Function: The Biological Door to Inflammation, Autoimmunity, and Cancer Alessio Fasano Physiol Rev 2011 Jan
  • Leaky Gut and Autoimmune Diseases Fasano Clinic Rev Allerg Immunol 2011 Nov

  

Below is a simple chart that list the stressors/environmental factors that either increase intestinal permeability directly or damage the balance of the gut flora, all leading to inflammation.

Increasing Intestestinal Permeability

Gluten/Prolamines

Casein

HBC

Stress

Lectins & Saponins

Low Vitamin D

PPI

Sleep Deprivation

Omega 6 Fats

Antibiotics

Alcohol

Endurance Exercise

FODMAPs

NSAIDs

Capsaicin

 

 

Below is a simple chart that list the environmental factors that either decrease intestinal permeability directly or improve the balance of the gut flora, all leading to reduced inflammation and healing.

Improving Intestestinal Permeability

IBD Diet

Krill Oil

Probiotics & Fermented Food

Colostrum

Proline (Broth & Gelatin)

Curcumin — BCM95

Mutaflor, VSL#3, Lactobacillus paracasei

LDN

CLA (Bones & Butter)

Boswellia — 5Loxin

S. Boulardii,  B. Coagulans

Cannaboids (CBD)

D3 & K2

L. Glutamine & Arginine

Sleep, Meditation/Yoga, Acupuncture

IF & HIIT = Growth Hormone

Diet:

  

 Fat Balance:

  • Linoleic Acid, a Dietary N-6 Polyunsaturated Fatty Acid, and the Aetiology of Ulcerative Colitis – A European Prospective Cohort Study. Gut 2009 July
  • The Type of Dietary Fat Modulates Intestinal Tight Junction Integrity, Gut Permeability, and Hepatic Toll-Like Receptor Expression. Alcohol Clin Exp Res. 2011
  • Conjugated linoleic acid modulates immune responses in patients with Mild to Moderately active Crohn’s disease. Clinical Nutrition 2012 March.
  • Lipid based therapy for ulcerative colitis-modulation of intestinal mucus membrane phospholipids as a tool to influence inflammation. Int J Mol Sci. 2010 Oct
  • Butyrate enhances the intestinal barrier by facilitating tight junction assembly via activation of AMP-activated protein kinase in Caco-2 cell monolayers. J Nutr. 2009


   

Microbiota & Probiotics:

  • Gut Microbiota and Pediatric Disease Dig Dis 2011
  • Association between the use of antibiotics and new diagnoses of Crohn’s disease and ulcerative colitis. Am J Gastroenterol. 2011 Dec
  • Association of Repeated Exposure to Antibiotics With the Development of Pediatric Crohn’s Disease–A Nationwide, Register-based Finnish Case-Control Study. Am J Epidemiol. 2012 Apr
  • Influence of Saccharomyces boulardii (Florastor) on the intestinal permeability of patients with Crohn’s disease in remission. Scand J Gastroenterol. 2008
  • Anti-inflammatory effects of Saccharomyces boulardii mediated by myeloid dendritic cells from patients with Crohn’s disease and ulcerative colitis. Am J Physiol Gastrointest Liver Physiol. 2011 Dec
  • The probiotic Escherichia coli Nissle 1917 (Mutaflor) reduces pathogen invasion and modulates cytokine expression in Caco-2 cells infected with Crohn’s disease-associated E. coli LF82. Trop Med Int Health. 2011 May
  • Probiotic Bacteria Produce Conjugated Linoleic Acid Locally in the Gut That Targets Macrophage PPAR γ to Suppress Colitis. PLoS One. 2012
  • Lactocepin Secreted By Lactobacillus Exerts Anti-Inflammatory Effects By Selectively Degrading Proinflammatory Chemokines Cell Host & Microbe 2012 April
  • Helminthic therapy: improving mucosal barrier function. Trends Parasitol. 2012 Mar 

Supplements:

  • Vitamin D and gastrointestinal diseases: inflammatory bowel disease and colorectal cancer.Therap Adv Gastroenterol. 2011 Jan 
  • Curcumin Ameliorates Hydrogen Peroxide-Induced Epithelial Barrier Disruption. Dig Dis Sci. 2012 March.
  • Therapy of active Crohn disease with Boswellia. Z Gastroenterol. 2001 Jan
  • Dietary supplementation of krill oil attenuates inflammation and oxidative stress in experimental ulcerative colitis. Scand J Gastroenterol. 2012 Jan
  • Glutamine and Whey Protein Improve Intestinal Permeability and Morphology in Patients with Crohn’s Disease: A Randomized Controlled Trial. Dig Dis Sci. 2011 Oct
  • Combined Glutamine and Arginine Decrease Proinflammatory Cytokine Production by Biopsies from Crohn’s Patients J Nutrition 2008
  • Zinc supplementation tightens “leaky gut” in Crohn’s. Inflamm Bowel Dis. 2001 May
  • Intestinal immune system influenced by cocoa-enriched diet. J Nutr Biochem. 2008 Aug 

Drugs:

  • Therapy with the opioid antagonist naltrexone promotes mucosal healing in active Crohn’s disease: a randomized placebo-controlled trial. Dig Dis Sci. Smith & Zagon 2011 Jul 

  

  • Rifaximin-extended intestinal release induces remission in patients with moderately active Crohn’s disease. Gastroenterology. 2012 May
  • Cannabinoid-induced apoptosis in immune cells as a pathway to immunosuppression. Immunobiology. 2010 Aug
  • Cannabinoids mediate opposing effects on inflammation-induced intestinal permeability British Journal of Pharmacology 2011
  • Linaclotide in the management of gastrointestinal tract disorders. Drugs Today (Barc). 2012 Mar
  • 5-aminosalicylate is not chemoprophylactic for colorectal cancer in IBD: a population based study. Am J Gastroenterol. 2011 Apr
  • Efficacy of 5-aminosalicylates in Crohn’s disease: systematic review and meta-analysis. Am J Gastroenterol. 2011 Apr

The Crohn’s and Colitis Foundation of Canada Endorses LDN?

June 2, 2012 1 comment

In an article on their website entitled Opioid boost may ease Crohn’s symptoms, the CCFC gives Low Dose Naltrexone (LDN) a positive review. Of course they are cautious and don’t really endorse LDN, but this is at least a step in the right direction.

Dr. Keith Sharkey – the Crohn’s and Colitis Foundation of Canada Chair in IBD Research – believes it is worthwhile for patients interested in LDN to consider and discuss this treatment option with their doctors. “Talk to your doctor and ask whether it’s safe and appropriate for you,” he said. And he goes on to suggest that “further clinical trials are absolutely warranted and low-dose naltrexone has to be tested in a multi-centre study.”

LDN acts as a powerful anti-inflammatory and we’ve seen direct results of improved ESR and CRP with LDN.  The clinical trial showed that it improved symptoms for 88% of those in the study, but 33% saw complete remission with endoscopic confirmation of mucosal healing within 12 weeks. All with no dietary changes.


It is important to note that the CCFC may never have paid any attention to LDN if it were not for the tireless efforts of Sara Craig who manages a support page on Facebook. Sara made the effort to collect LDN success stories from people like me and she presented them to the CCFC at a conference in October of 2011. It appears that her efforts were fruitful as she got Dr. Sharkey to do some research.

Since Naltrexone is an FDA approved drug, LDN can be prescribed “off-label” by your doctor right now, there is no reason to wait to begin using LDN. You can learn more about LDN, and find doctors that will prescribe it at http://www.ldnscience.org and http://www.lowdosenaltrexone.org If you are set on working with your current doctor, you could bring them the published results from the small clinical trial that was done at Penn State by Dr. Jill Smith. In fact, Dr. Smith will consult with your doctor if they call her office – 800-243-1455.

If your doctor still won’t cooperate, you can email Crystal Nason – angelindisguiseldn@yahoo.com with where you live, and she will give you a list of LDN prescribing doctors. Of course, you can always get Naltrexone yourself without a prescription via a number of online pharmacies – http://www.alldaychemist.com & http://www.unitedpharmacies.com have the cheapest prices. You can get a years supply of LDN for about $100.

LDN is not a magic cure for Crohn’s but combined with other safe strategies it can make a huge difference. LDN, along with the SCD, GAPS or Paleo diet should be the first line of treatment. Maybe with exposure like this we’ll see some progress.

Thanks Sara!


Vassar College, Paradigm Shifts, and Crohn’s Disease

April 15, 2012 12 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.

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