Incredible Interview With The “Celiac God”


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This week we have a guest blog of sorts.  I didn’t actually do the interview but it came across my desk (thanks Leigh!) and I think it’s worth sharing.

I’ve been following Dr. Alessio Fasano for years.  I lovingly call him the Celiac God.  He has well over 200 published papers on Celiac disease and he is certainly an expert on the topic.


A few years back, he scientifically proved a theory that has existed in the Functional Medicine world for years.  What theory is that?  Leaky gut precedes auto immune disease. In fact, he just won the Linus Pauling award at the IFM annual conference just a few weeks back for this ground breaking work.

There are 3 things required to “get” Celiac disease:

1.  The genes. Either DQ2 or DQ8.  Without both or either gene, there is little statistical chance you can have Celiac disease.  You can be gluten sensitive….but not Celiac.  It’s an important distinction since having one auto immune disease raises the risk of having other auto immune diseases (Dr. Mullen, Johns Hopkins).  Celiac also comes with complications that gluten sensitivity doesn’t – things like bone loss, anemia’s  and nutrient deficiencies from mal-absorption, and higher rates of cancer, as well as overall mortality.

I must also point out that 30-40% of the population carries one or both genes.  But only 1% will end up with Celiac.  Why?  Because it takes the perfect storm.  Keep reading.

2.  The 2nd thing required for Celiac disease is that one must eat gluten. Exposure.  If you had the genes and didn’t eat gluten, ever, you couldn’t get Celiac disease.

3.  The 3rd thing that occurs before Celiac manifests is a leaky gut. Hyper Intestinal Permeability.  I explain it to my patients like this:  imagine that you have a cellophane wrapper coating the inside of your small intestine.  It scratches easily right?  Well, for various reasons, people get a “leaky gut” and now when they eat gluten the proteins get inside the cell membrane where they aren’t supposed to be.  The gluten “leaks” across.   70% of our immune system is in the gut, and now the immune system “sees” a foreigner.  It responds and as the person continues to   a) have a leaky gut and b) eat gluten the immune system keeps attacking.  It really thinks it’s helping.  The protein should not be there.

So, that, in a nutshell, is how one “gets” Celiac.  Genes.  Gluten.  Leaky Gut.

Here’s the interview. Note that there are hundreds of thousands of people with Celiac who are walking around, typically sick and miserable, with a variety of symptoms, and have yet to be diagnosed.  Celiac is a “chameleon”.  It can manifest with such a wide range of symptoms that unless a doc does a thorough history (vs. “what are you here for today?”), he/she will likely miss all the symptoms that add up to Celiac. If you were the patient and didn’t know what symptoms were important, it would likely be missed.

Living Without’s editor Alicia Woodward talks with Dr. Alessio Fasano, founder and medical director of the University of Maryland School of Medicine’s Center for Celiac Research.

Alicia: Everyone used to think that 1 person in 10,000 has Celiac disease. Now we know it’s 1 in 133. You and the Center for Celiac Research spearheaded the study that changed the prevalence data on this disease. Tell us the story behind this very significant change.
Dr. Fasano: It started when I realized there were no celiacs in the United States. As a pediatric gastroenterologist, I’d been practicing in Naples, Italy, and treating 10 to 12 celiac patients a week. In 1993, I moved to Baltimore and months would pass when I wouldn’t see a single celiac patient. Not one. I thought, isn’t this strange. Here’s an autoimmune disease with two ingredients—the genes you’re born with and gluten. Many Americans and Europeans share genetic makeup and grains are grains. Nobody could dispute that and yet the general wisdom here claimed that celiac disease was an extremely rare disorder. It didn’t make sense so I decided to check it out.

What happened next?
I knew we had to count the people with celiac disease in the United States. To do that, we had to develop a diagnostic tool that would be undisputedly accepted by everybody. So we developed the tTG (anti-tissue transglutaminase) test. Now commercially available, it’s the standard test used for diagnosing celiac disease everywhere. Once we had the test, we spent the next five years conducting the largest epidemiological study ever in the United States. We screened over 13,000 people from all over the country.

So suddenly celiac disease is no longer a rare disorder.
That’s right. Keep in mind that in 2003 when the study was completed, there were only about 40,000 people diagnosed with celiac disease in the United States. Since that time, due to increased awareness, the rate has doubled every three years. Today, we’re close to 100,000 diagnosed—and counting. We estimate there are about 3 million people in the United States with this disease. Think about that. There is no other pathology that is so frequent—not Crohn’s disease, cystic fibrosis, ulcerative colitis, multiple sclerosis, rheumatoid arthritis. Nothing even comes close.

You and your team of researchers discovered zonulin, the human protein that may hold clues to the cause and treatment of celiac disease and other autoimmune disorders. Can you talk about that?
Yes. It turns out that celiac disease is an excellent model for gaining insight into how other autoimmune diseases develop. In studying this condition, we’ve realized that in addition to genes and the environmental trigger (that’s gluten), there is a third element —the loss of the intestinal barrier that protects us from invaders. In other words, people with celiac disease have a leaky gut. Big chunks of molecules—allergens—pass through the intestines and trigger a response by the immune system, which harms the patient genetically predisposed to autoimmunity. We discovered that zonulin is the protein that unlocks the intestinal barrier and creates the leaky gut. People with celiac disease produce higher levels of zonulin. So do people with Type 1 diabetes, multiple sclerosis and other autoimmune diseases.

What does that mean?
Now that we know that zonulin increases intestinal permeability, we can develop inhibitors that block it from doing so. Alba Therapeutics Corporation is working on this technology and we are really starting to see the light at the end of the autoimmunity tunnel. Alba is currently conducting clinical trials on AT-1001, a substance which addresses the leaky gut issue, and they’re making exceptional progress.

What is your hope for the future?
I hope for a better life for my patients. Even when patients believe they are strictly eating gluten free, gluten can sometimes sneak into their diet and create problems. Having a pill for celiac disease, like the one currently in clinical trials, could be a safety net above and beyond the diet to make sure that patients aren’t harmed by cross contamination. I’d also really like to see this technology work for devastating autoimmune diseases like multiple sclerosis and rheumatoid arthritis. I have close family members with these conditions and so I very much hope this technology means effective treatment is coming soon.

PS – not being a big pharmaceutical fan, there are a lot of natural products that also help with intestinal permeability and leakiness.  Fixing leaky gut is something I address daily or weekly in my practice.


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 About Tracy Konoske, MS, RDN

meet_tracyFor the past 20 years, Tracy has served as a dietitian/nutritionist and educator to hundreds of patients throughout the US on their journeys to restoring health, and optimizing well being. 

Tracy has a passion for helping others heal, fueled by her own recovery from Chronic Neurological Lyme, Chronic Fatigue, Epstein Barr Virus, SIBO, and anxiety. 

Tracy says "I have the deepest respect and passion for the healing abilities of the human body.  Each day, I witness miracles when the body is provided optimal fuel:  a nutrient dense, whole, plant foods diet combined with any necessary lifestyle changes.  A talented teacher, known for explaining complex medical topics in plain English, Tracy will assist you in restoring your health and your freedom.  

Tracy helps people with chronic & mystery illness restore their health