Hi All,
I received permission today from Dr. Lewey to share this on our Board. I know all of you detectives, especially, will enjoy this:
Polly,
Great to hear from you. It is exciting to hear from another doctor. I
stay in touch with Ken Fine and Rodney Ford a peds GI in New Zealand.
I recommended you email them both as we share our thoughts and
experiences. Also I recommend you contact Loren Cordain Ph.D., author
of The Paleo Diet and numerous scholarly articles on the hunter
gatherer diet. Loren and I have met and I am working with his team on
a lectin project. He is at Colorado State University in Fort Collins.
I will provide e-mails to you. They all are very helpful resources
and accept e-mail contact. Ken has a special interest in LC. In fact
that was his area of research interest at Baylor. He has published on
the gluten link to LC and has insights on the specific DQ serotypes
that are associated with LC. Loren has great insights into the leaky
gut connection to various lectins. He and I have literally talked for
hours on this and I believe he is very forward thinking about this,
maybe has the link nailed, a connection he terms the trojan horse.
Rodney is very experienced in non-celiac gluten sensitivity as well
as food allergy intolerance.
The lectin connection continues to intrigue me. The gluten related
impairment in tight junctions and zonulin regulation is very
important and I know Fassano is working on this. Interestingly they
have published that VSL#3 was able to hydrolyze gliadin in bread
dough. The growing link of the dysbiosis or altered gut flora is
quite exciting. VSL#3, as far as I can tell is gluten and casein
free. It is the most studied probiotic. I have begun recommending it
very aggressively. Flora Q is a gluten-free casein-free probiotic of
high quality with multiple strains of bacteria that I recommend as
alternative to people also though published studies are lacking
compared to VSL#3. I will attach a file of abstracts on VSL#3.
Saccharomyces boulardii yeast also has some exciting positive effects
though some rare reports of fungal infections in immunocompromised so
I am a little more reticent about broadly recommending this probiotic
(Florastar is brand in US).
I have found several studies indicating that altered gut flora open
tight junctions and probiotics promote closing them. Also I have
found information indicating gluten opens tight junctions even in
healthy intestine not just celiac or high risk DQ2 DQ8 individuals.
Loren and I have looked at a lot of lectin research indicating
various food lectins injuring the gut allowing food protein and
bacteria/bacteria proteins through, possibly complexed together in
Loren's trojan horse model.
I would suggest you consider VSL#3 after a bowel prep and a course
of xfaxin/rifaximin. This is would be a theoretical recommendation
that I suggest to be combined with a 4 week trial of Cordain's paleo
diet and/or Ken Fine's anti-inflammatory diet. I have had success
with entocort but share your desire to avoid steroids if possible
though entocort has limited systemic risk. I have had some patients
have symptoms of steroid side effects however with entocort. My
experience with 5-ASA's in general has been moderately disappointing
for LC. I would note that pentasa is released throughout the gut so
is less effective than colazol/balsalazide or azulfadine/
sulfasalazine for colitis especially distal colitis. Similarly Asacol
is not as effective for colonic disease. Both pentasa and asacol are
released throughout gut and I have seen several patients who have
healing of right colon but distal colon is still active because those
two meds have released most or all of the 5-ASA more proximally.
Colazol and azulfadine are not effective in small bowel as colonic
bacteria are required to break the azo bond to release the 5-ASA in
the colon.
I would ask if you have had IBD serology testing. Prometheus IBD7
includes ASCA IgG and IgA, Omp-C, and anti-CBir1 antibodies in
addition to pANCA expanded profile. ASCA I have found to be positive
in celiacs, non-celiac gluten sensitives and in a couple of people
including a pediatrician colleague who don't have provable Crohn's
but respond to treatment as Crohn's. I am advocating a probiotic
regimen to these people. The pediatrician friend required a course of
steroids and flagyl in past but just completed a xfaxin/rifaximin
course and probiotic follow on and is feeling much better. A capsule
endoscopy is pending to look beyond the reach of the two upper and
lower endoscopies, CT and small bowel series that have been non-
diagnostic for Crohn's so far despite his symptoms that are
suggestive and a positive ASCA.
in addition to Ken's enterolab IgA stool antibodies, DQ genetics,
traditional food allergy testing (RAST and skin prick testing) and
full celiac panels that include gliadin IgG & IgA, reticulin
antibodies in addition to EMA and tTG I am looking at various tests
for specific food intolerance. These include IgG antibody tests (York/
Optimum Health), Mediator Release Testing through Signet, and stool
testing through Doctors Data. I have had patients who have testing
through all these labs and there has been helpful information gleaned
from the results though MRT is "unsubstantiated" according to US
scientists and IgG food tests are still not well accepted by US
either. The Doctors Data lab I know very little about but some of the
information from results patients have brought to me seemed to
compliment what was missing in their work-up and make sense. In
particular yeast and gut bacteria levels seemed most helpful. A
couple of patients had altered lactobacilli, bifidobacter or
acidophilus levels because of taking only lactobacilli or acidophilus
containing probiotics of limited number or strains. Treatment for
excess yeast and adding a broader spectrum probiotic seems to have
helped. Treating blastocystic hominis that was detected also helped
some.
What I find both very exciting and frustrating at the same time is
the huge amount of information out there in the IBD, celiac and food
intolerance, lectin and basic science gut research that is
disconnected like the three blind men describing an elephant while
all touching a different part of the animal. On top of this is the
cultural bias of our diet beliefs including government advocated food
pyramid, industry support of genetically modified foods and the
resistance of the scientific community to advocate food and probiotic
recommendations in lieu of more drug research.
I took the liberty to unload a fraction of what is rattling around in
my brain and what I have learned on my journey over the past 2 years.
I apologize for the length but hope that it helps you and encourages
you. Lets stay in touch.
Best regards,
Scot
Scot M. Lewey, D.O., FACP, FAAP, FACOP
www.theFoodDoc.com
Lots of food for thought!
Love,
Polly
Gut Flora, Zonulin, Lectins......Tying it All Together
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Wow! That did indeed include lots of food for thought. I found this to extremely interesting:
Love,
Tex
The quote below, answers a lot of questions about why these meds just don't do the job for many MCers:I have found several studies indicating that altered gut flora open tight junctions and probiotics promote closing them. Also I have found information indicating gluten opens tight junctions even in healthy intestine not just celiac or high risk DQ2 DQ8 individuals. Loren and I have looked at a lot of lectin research indicating various food lectins injuring the gut allowing food protein and bacteria/bacteria proteins through, possibly complexed together in Loren's trojan horse model.
I really doubt that very many GI docs would ever put two and two together, and realize what was happening in a case such as he mentions above, where the proximal colon was healed, and the distal portion was still actively inflamed. He really knows what he's doing. There are volumes of excellent information, and valuable insight in that email. Thanks a million for posting that.Similarly Asacol is not as effective for colonic disease. Both pentasa and asacol are released throughout gut and I have seen several patients who have healing of right colon but distal colon is still active because those two meds have released most or all of the 5-ASA more proximally. Colazol and azulfadine are not effective in small bowel as colonic bacteria are required to break the azo bond to release the 5-ASA in the colon.
Love,
Tex
What really boggles my mind is that I knew all of these things even before I heard it from him and that Drs who specialize in this sort of stuff don't. That is pretty damn scary to me. Heck I even started talking about mobility of the GI and how gluten affects it (even in folks without those genes/Celiac/intollerance) and he looked at me funny and said that's not right.tex wrote:Wow! That did indeed include lots of food for thought. I found this to extremely interesting:
The quote below, answers a lot of questions about why these meds just don't do the job for many MCers:I have found several studies indicating that altered gut flora open tight junctions and probiotics promote closing them. Also I have found information indicating gluten opens tight junctions even in healthy intestine not just celiac or high risk DQ2 DQ8 individuals. Loren and I have looked at a lot of lectin research indicating various food lectins injuring the gut allowing food protein and bacteria/bacteria proteins through, possibly complexed together in Loren's trojan horse model.
I really doubt that very many GI docs would ever put two and two together, and realize what was happening in a case such as he mentions above, where the proximal colon was healed, and the distal portion was still actively inflamed. He really knows what he's doing. There are volumes of excellent information, and valuable insight in that email. Thanks a million for posting that.Similarly Asacol is not as effective for colonic disease. Both pentasa and asacol are released throughout gut and I have seen several patients who have healing of right colon but distal colon is still active because those two meds have released most or all of the 5-ASA more proximally. Colazol and azulfadine are not effective in small bowel as colonic bacteria are required to break the azo bond to release the 5-ASA in the colon.
Love,
Tex
Mike
PS. Here's the study on gluten and it's effects on "normal" folks.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum
The bit about how some drugs require certain bacteria in the GI to "turn it on" can be found in some of the many studies I've read on probiotics.
Mike and Tex,
I totally agree with your comments.
I feel very lucky to have a Hopkins-trained GI doc who works with me, but she is not up on the latest either. In fact, I spoke with her last night just to see if she was aware of anything new on the horizon. She uses standard treatment protocols - Asacol first, pred. second. Is not a total believer that gut flora might be a major issue in MC (although she has seen the study about its importance in IBS). She has never heard of zonulin but has heard of Dr. Fassano (but has not read his research). But she was honest about it and actually embarrassed. No ego problems at least.
However, since learning from me about the gluten connection some years ago, she is actively now looking for and diagnosing not just celiac disease but also gluten sensitivity. She told me how amazed she is with the number of patients she has seen improve when she suggests the GF diet......with many different kinds of IBD/bowel issues. She even diagnosed celiac disease in a very short woman (who had no diarrhea but had never grown properly because of celiac). Although it was too late for the woman to add more inches, she had young twins (both very small) who began growing after the GF diet was instituted.
Love,
Polly
I totally agree with your comments.
I feel very lucky to have a Hopkins-trained GI doc who works with me, but she is not up on the latest either. In fact, I spoke with her last night just to see if she was aware of anything new on the horizon. She uses standard treatment protocols - Asacol first, pred. second. Is not a total believer that gut flora might be a major issue in MC (although she has seen the study about its importance in IBS). She has never heard of zonulin but has heard of Dr. Fassano (but has not read his research). But she was honest about it and actually embarrassed. No ego problems at least.
However, since learning from me about the gluten connection some years ago, she is actively now looking for and diagnosing not just celiac disease but also gluten sensitivity. She told me how amazed she is with the number of patients she has seen improve when she suggests the GF diet......with many different kinds of IBD/bowel issues. She even diagnosed celiac disease in a very short woman (who had no diarrhea but had never grown properly because of celiac). Although it was too late for the woman to add more inches, she had young twins (both very small) who began growing after the GF diet was instituted.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly,
Talk about good work! You're even helping other doctor's patients. That's very impressive.
Never doubt that.
Love,
Tex
Talk about good work! You're even helping other doctor's patients. That's very impressive.
Never doubt that.Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Aw, shucks, Tex! 
Thanks for the compliment. But everyone here deserves it, too. I believe ALL of us are helping to educate our docs about MC, which can only benefit fututre MC patients. And just look at this Board that you administer so efficiently (and selflessly). I often wonder how many lurkers have found info here that helped them with their MC.......we will never know the total impact.
OK let's have a group hug:
Love,
Polly
Thanks for the compliment. But everyone here deserves it, too. I believe ALL of us are helping to educate our docs about MC, which can only benefit fututre MC patients. And just look at this Board that you administer so efficiently (and selflessly). I often wonder how many lurkers have found info here that helped them with their MC.......we will never know the total impact.OK let's have a group hug:
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
