The link between Gluten Sensitivity, Auto-immune Diseases and the Leaky Gut

The Gut is not Like Las Vegas: What Happens in the Gut Does Not Stay in the Gut

I saw this Youtube video on the Vasculitis UK Facebook page (formerly the Stuart Strange Vasculitis Trust) and thought it was worth linking to via this blog. It's just over an hour long so make a cup of coffee before you begin watching it.

Here's a little bit of detail about what is covered in the video (don't let it put you off - the video is a lot easier to understand and even includes some jokes!).

The intestinal epithelium is the largest mucosal surface providing an interface between the external environment and the mammalian host. Its exquisite anatomical and functional arrangements and the finely-tuned coordination of digestive, absorptive, motility, neuroendocrine and immunological functions are testimonial of the complexity of the gastrointestinal system. Also pivotal is the regulation of molecular trafficking between the intestinal lumen and the submucosa via the paracellular space. Under physiological circumstances, this trafficking is safeguarded by the competency of intercellular tight junctions (TJ), structures whose physiological modulation is mediated, among others, by the TJ modulator zonulin. The structural and functional characteristics of intercellular TJ and the protean nature of the intestinal content suggest that the gut mucosa represent the “battlefield” where friends (i.e., nutrients and enteric microflora) and foes (i.e., pathogenic microorganisms and their toxins) need to be selectively recognized to reach an ideal balance between tolerance and immune response to non- self antigens. This balance is achieved by selective antigen trafficking through TJ and their sampling by the gut associated lymphoid tissue. If the tightly regulated trafficking of macromolecules is jeopardized, the excessive flow of non-self antigens in the intestinal submucosa can cause autoimmune disorders in genetically susceptible individuals.

This new paradigm subverts traditional theories underlying the development of autoimmunity, which are based on molecular mimicry and/or the bystander effect, and suggests that the autoimmune process can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing intestinal barrier competency.

Science Based Medicine

Whenever I see something like this doing the rounds on Facebook I always check out the Science Based Medicine website to see if it is legitimate or not. Alessia Fasano was mentioned on this page - a balanced look at gluten sensitivity. Food sensitivities are a fertile ground for scammers, dodgy companies and conspiracy theories, most of whom have their own pet theory to promote, and/or want your cash for their 'miracle cure.' The page I have linked to outlines the issues surrounding gluten sensitivity and the current scientific understanding of it.

I'd urge everyone to be sceptical of things you read on Facebook and do a little bit of research before you believe and share them. Science Based Medicine is a great place to start your research.

More About Alessio Fasano

Alessio Fasano, M.D., founded the Center for Celiac Research in 1996 to offer state-of-the art research, clinical expertise and teaching for the diagnosis, treatment, and prevention of gluten- related disorders, including celiac disease, wheat allergy and gluten sensitivity. In 2003 members of Dr. Fasano’s research team established that celiac disease affects approximately 1 percent of the U.S. population, a significantly higher number than previously believed. Researchers from the Center also have recently identified molecular differences between celiac disease and gluten sensitivity, a newly defined condition on the spectrum of gluten-related disorders.

Dr Alessio Fasano

During research designed to develop a cholera vaccine, Dr. Fasano uncovered a toxin, zonula occludens, which causes diarrhea by loosening the tight junctions and allowing intestinal permeability. Subsequently, the Fasano lab identified the protein zonulin, which controls this process. Dr. Fasano’s research since established the role of zonulin in the pathogenesis of celiac disease and type 1 diabetes. Safety and efficacy testing of a zonulin inhibitor, Larazotide acetate, has been completed and plans are underway for Phase III clinical trials of the compound.

Dr. Fasano’s lab is currently investigating the composition and changes in the gastrointestinal microbiota to help determine why some individuals with an inherited predisposition to celiac disease develop clinical disease while others do not. His lab is also investigating the role of the timing of gluten introduction to infants in the development of celiac disease and working to uncover a biomarker and to develop a diagnostic tool for gluten sensitivity. In addition, the Center is pursuing possible links between gluten-related disorders and conditions such as schizophrenia and Autism Spectrum Disorder in certain subgroups of patients.

Ten Feet at a Time - Cindy Abbott

I love TED talks, and whilst browsing Youtube the other day I searched for Wegener's Disease and this video came up as a result. It is 15 minutes long and well worth a watch. While not all of us could climb a mountain, Cindy is an inspiration to everyone living with a chronic illness.

This talk was given at a local TEDx event, produced independently of the TED Conferences. Cindy Abbott and thirty million Americans have rare diseases that often go undiagnosed or treated properly. She became an advocate to raise rare awareness for the National Organization of Rare Disorders and is attempting to become the first woman (and second person) to both summit Mt. Everest and complete the 1050-mile Alaskan Iditarod Sled Dog Race. Her story of moving Beyond Limits, 10 Feet at a time is inspiring.

At the age of 48, and with almost no mountaineering experience, Cindy Abbott decides to climb Mt. Everest. A few months after that fateful decision, she becomes functionally blind in one eye and is subsequently diagnosed with Wegener’s granulomatosis, a rare, incurable and life-threatening disease. Thirty million Americans have rare diseases and before her climb Cindy became an advocate to raise rare disease awareness for the National Organization of Rare Disorders (NORD). After fifty-one days of working her way up the mountain, on May 23, 2010, she stood at the top of the world holding a NORD Banner and became the 40th America female to summit Mt. Everest.

In the following months, Cindy wrote and published Reaching Beyond the Clouds: From Undiagnosed to Climbing Mt. Everest.

Cindy is once again reaching for the unreachable: To become the first woman (and second person) to summit Mt. Everest and complete the 1050-mile Alaskan Iditarod Sled Dog Race: two of the world’s most extreme adventure sports.

My journey shows how adversity can elicit hidden strength, and I hope to inspire people to live life to its fullest and reach for their dreams.
— Cindy Abbott

Cindy is 55 years old and lives in Irvine California. She is a wife and mother, and teaches Health Science at California State University, Fullerton.

About TEDx, x = independently organized event In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TEDTalks video and live speakers combine to spark deep discussion and connection in a small group. These local, self-organized events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organized.* (*Subject to certain rules and regulations)

The Future of Vasculitis Video - Part 1

I came across an interesting video today, produced by the Lauren Currie Twilight Foundation, that I thought I'd share with the Wegener's community. I previously blogged about the Lauren Currie Foundation in this post.

On the 22nd January 2015, The Lauren Currie Twilight Foundation hosted a live three part online webcast to discuss the future of Vasculitis.  The aim was to have an in-depth discussion about vasculitis and to answer such questions as - Which research studies are running for vasculitis?  Has our understanding of the disease developed? Are we closer to understanding what triggers or causes vasculitis? What improvements have been made in the last 10 years and what are the targets for the future? 

The Lauren Currie Twilight Foundation invited highly respected vasculitis experts and researchers to our webcast panels for each discussion.  The webcast panel presented and shared their own research projects’ objectives, findings, understandings and goals.  As this was a live event, viewers were free to ask questions at the end. 

The guest panel for part 1 includes Dr Alan Salama & Neil Basu.

Dr Alan Salama is a Consultant and Leader in Renal Medicine at the UCL Centre for Nephrology, Royal Free Hospital in London. Dr Salama has a specialist interest in immunological kidney disease, specifically systemic vasculitis. He runs a busy vasculitis clinic and a research laboratory investigating mechanisms of immune regulation in systemic vasculitis and glomerulonephritis.

Dr Neil Basu is a Senior Clinical Lecturer & Honorary Consultant Rheumatologist at the University of Aberdeen.  Dr Basu oversees the Aberdeen vasculitis clinic and has a specialist research interest in systemic vasculitis.  Dr Basu’s research projects have included Epidemiology of multi-system autoimmune diseases, Investigation of rheumatic fatigue and more recently, patient wellbeing studies focused around ANCA associated Vasculitis.

This webinar also provides details on research projects currently funded by The Lauren Currie Twilight Foundation and Vasculitis UK who are both actively working to improve research in vasculitis.

Due to restrictions on the video I an unable to embed it in this blog post but if you would like to watch it, please click on the link below.

I'll be sure to link to parts 2 and 3 of videos when they are published. In the meantime I'd encourage you to take a look at the other videos on the Lauren Currie Vimeo channel and check out their website.

Vasculitis Foundation video - Cynthia Carr Occupational Therapist and GPA Caregiver

In this video, occupational therapist, Cynthia Carr talks about how her awareness of vasculitis began with her husband's diagnosis of GPA - Wegeners Disease. This past July, Cynthia gave a presentation at the Vasculitis Symposium in Philadelphia focusing on ways that vasculitis patients need to care for themselves. She stresses the emotional, physical, and mental challenges that demand holistic and clinical solutions for patients.

At the symposium in Atlanta last year I observed patients really struggling later in the day with fatigue and pain as they tried to push through the whole day’s events. I wanted to take my knowledge and offer some coping methods for vasculitis patients and caregivers. As a caregiver myself I know there is a need for this information.
— Cynthia Carr

Cynthia also talks about the benefits for occupational therapy for vasculitis patients because they need to learn how to those things that give enjoyment, but are limited by pain or other issues brought on by vasculitis.

Video camera image used with permission AV Hire London.