What To Do If You Weren’t Tested for Celiac, But You’re Gluten Free with Alessio Fasano Gluten Freedom: GFS Podcast 041

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alessio fasano gluten freedomThis week’s Gluten Free School Podcast interviews Celiac titan Dr. Alessio Fasano Gluten Freedom author about gluten sensitivity and what to do if you’ve already gone gluten-free without getting tested for celiac.

Now, to answer some of the fury over the “Gluten Intolerance is fake” issue that’s again come up due to FODMAP studies in Australia — any article stating in any manner that gluten sensitivity is fake is wrong. I have looked at the studies in question which concluded that reducing FODMAPs in the diet was beneficial for those who claimed to have gluten sensitivity.

To be clear, the studies only quantify gastrointestinal symptoms typical of gluten sensitivity. Any articles using these FODMAP studies as proof that gluten intolerance is fake have a very short-sighted understanding of what gluten sensitivity is by assuming that gastrointestinal issues are all that’s in play.  The symptoms of gluten sensitivity are much broader than just IBS-like symptoms which this studies do nothing to address.  What about people’s brain fog and other neurological issues, or skin rashes or joint pain?  Funny, the “gluten intolerance is fake” articles do nothing to address those problems because the studies don’t actually quantify them.

Furthermore, the biomarkers for gluten sensitivity are still undetermined which means that there are no clear markers that scientists can actually quantify to make such an assessment as “Gluten Sensitivity is fake”.  And as you will hear in this week’s podcast with Dr. Fasano, the assertion that everyone who claims they have gluten sensitivity should just get tested for celiac is misguided because anyone who has been gluten-free for quite some time (and has found relief from doing so) would most likely test negative for celiac even if they did potentially have it because the biomarkers for celiac would be gone.

To simply say that an entire issue that many like myself suffer with is fake simply because they can make people’s digestive distress appear and possibly disappear by changing the diet doesn’t speak to the larger context of what gluten sensitivity really is.  I frankly find what amounts to a smear campaign against people with gluten sensitivity to be nothing more than a way to drive traffic to articles based on studies that don’t quite add up to their inappropriate claims and controversial headlines.

Dr. Alessio Fasano Gluten Freedom

The following points were discussed:

00:22 — Introducing Dr. Alessio Fasano, Celiac titan and author of Gluten Freedom.

02:32 — The difference between celiac disease, gluten sensitivity and a wheat allergy

05:48 — Some of the red flags doctors track to diagnose celiac disease, and why it is so limiting.

07:50 — Are Cyrex Labs and ALCAT testing reliable?

10:48 — Should gluten sensitive people also be tested for celiac disease, and get genetic testing.

13:51 — The new research linking autoimmune disease, inflammation and gluten.

17:29 — The first pilot-study on infants from birth and how parents can get involved.

19:26 — How using real food that is naturally gluten free shapes our microbiome.

22:56 — The ‘fact and fantasy’ world surrounding gluten free food products and how ‘cooking from scratch’ doesn’t mean spending all day in the kitchen.

25:44 — The premise of Gluten Freedom and for whom it was written.

 

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Transcription

Jennifer – Welcome back to the Gluten Free School podcast. I’m your host, Jennifer Fugo.  Today we are going to talk about all things gluten.  I decided to take this conversation to the mountain and in this case, the mountain happens to be Dr. Alessio Fasano.  Now look, this gentleman does not need any introduction because most of us know who he is, but he is a world-renowned pediatric gastroenterologist, research scientist, and entrepreneur. He knows all about matters pertaining to gluten. In 1996, he founded the Center for Celiac Research, now at Massachusetts General Hospital. Treating patients of all ages, the Center offers research, clinical expertise and teaching for the diagnosis, treatment, and prevention of gluten-related disorders including celiac disease, wheat allergy, and gluten sensitivity.

Now Dr. Fasano is from Italy and he has helped to revolutionize the experience for those, especially with celiac disease in the US. In 2003 he was able to establish through a ground-breaking study the rate of the autoimmune disorder,  namely celiac disease, at one in 133 Americans.

He was appointed division chief of Pediatric Gastroenterology and Nutrition at MassGeneral Hospital for Children (MGHfC). Dr. Fasano also heads the Mucosal Immunology and Biology Research Center and is Associate Chief for Basic, Clinical and Translational Research for the Department of Pediatrics at MGHfC. He is visiting professor of Pediatrics at Harvard Medical School. He is the author of the newly released “Gluten Freedom”, a book published on celiac disease, gluten-related disorders, and the gluten-free diet.

So let’s dive in!  Welcome to the show Dr. Fasano. I really appreciate it.

Dr. Fasano – Thank you Jennifer, it’s a pleasure to be on your show.

Jennifer - So I wanted to start off by giving people the three different talking points that this book, your Gluten Freedom book, is really about.  It’s really about how to live gluten free, but you differentiate between celiac disease, gluten sensitivity and a wheat allergy. Could you quickly tell us the difference between the three experience that people have?

Dr. Fasano – Sure. Until the recent past, meaning 15 years ago, we were under the impression that you had celiac disease and nothing else.  Now we appreciate that we are talking about a spectrum of gluten-related disorders.  And they are all the possible reactions of our immune system when we are exposed to gluten which is there to defend us against attackers.  Gluten is seen as something that can theoretically harm our body and depending on who you are, meaning depending on your genetic background, you can mount a different response to the exposure of this attacker.

So if you are genetically skewed to develop celiac disease, you will mount an autoimmune response. Because celiac disease is like having Diabetes, Multiple Sclerosis, or Rheumatoid Arthritis- it’s truly an autoimmune disease that will lead to a chain of events with the destruction of the intestine is the landmark of celiac disease with clinical consequences that can involve both the gastrointestinal system with symptoms like stomach ache, diarrhea, gas, bloating and so forth. Or symptoms like anemia, chronic fatigue, joint pain, miscarriages, infertility, or problems involving the nervous system like from chronic headache to foggy mind and all the way to schizophrenia. One percent of people that have probable gluten issues who react in this way will develop celiac disease.

Then there is a formulogic reaction to gluten.  We can mount an allergic reaction to gluten just as we can to any other food stuff like peanuts and strawberries.  And that implies that the immune system that reacts to an exposure of gluten, but now the machine that’s put in motion is different and leads to the specific production of weapons called immunoglobulin IgE that eventually leads to the release of a chemical called histamine that the typical way that you have an allergic reaction.  Roughly 0.3 to 0.4% of people will react that way.

And lastly the last form, gluten sensitivity is really the new kid on the block.  We didn’t know about this reaction until the recent past so we know very little other than it is a yet again different immune reaction to gluten that clinically completely overlaps with celiac disease and you cannot distinguish between these two forms just from clinical grounds.  But it does not involve an attack to your own body like in celiac disease and autoimmunity.  So you have a third element that slightly different.  That’s pretty much the overall spectrum of gluten that’s discussed in this book.

Jennifer - And there’s a lot of information that’s slowly coming out about gluten sensitivity and what it really is.  And I know that you are on the forefront of all the current research.  What are some of the biomarkers for gluten sensitivity?

Dr. Fasano - So right now, the only way to diagnose someone with gluten sensitivity is through exclusion criteria. If you have problems when eating gluten and it seems improved when gluten is taken out from your diet. You rule out celiac disease, wheat allergy and other cause for the symptoms and then you eventually call this individual as having gluten sensitivity.  Of course, this is less than idea.

We are really in research to find biomarkers to have a more direct way to see who really has this problem and who does not.  And currently one of the line of research that is taking place here at the Center for Celiac Research at the Massachusetts General Hospital for Children is to really recruit patients with gluten sensitivity, do a double blind study and find out who really has reaction to gluten.  And in those people, to try to identify and validate these biomarkers.

Jennifer - And when you say “biomarkers” – for those who might not be familiar with what exactly that means, what is a “biomarker”?

Dr. Fasano - A red flag that is telling us that you have a specific problem.  It’s a way to make a specific diagnosis, for example the biomarker for celiac disease is searching for antibodies against this enzyme called tissue transglutaminase or anti-tTG antibodies.  If you are positive for that test, the chance that you have celiac disease is pretty high. So we use that as a diagnostic test or biomarker.

Jennifer - I love it when physicians and experts can break down topics and terms that the normal person or the patient might not be familiar with to make them a little more educated when they walk into the doctor’s office. At least they know what they’re talking about.  So thank you for explaining that.

This begs a question and I get this question a lot.  I feel really lucky that I’m able to ask you this. So I had blood work run back in 2008 for food sensitivities and obviously gluten popped up and thus I’ve been gluten free for quite awhile now. This is my question – if there’s no definitive test, and as I’m looking through your book there is still nothing as far as conventional medicine that’s considered the gold-standard for gluten sensitivity testing and yet there are people and doctors who use Cyrex Labs or ALCAT testing… are these tests that people get, do you consider to be a reasonable method or way to find out information or are they not quite as legit as we’re hoping to get down the road?

Dr. Fasano - You know, in this kind of business, we give ourselves room so there’s no confusing people. When you develop a new drug or test, there are these rules created by the American Medical Association that asks us to obey so that we know we do this right.  We don’t take this lightly since we are dealing with health and therefore the well-being of human beings so we want to make sure that we do this right. People convene and set rules and they are dynamic and change over time for diagnostic tools.

To get back to your question, if somebody will develop a new tool, a new biomarker, a new test- first and foremost, it needs to be validated. In other words, that test does exactly what I claim that it’s doing. And then eventually it needs to be standardized and then it can be embraced by labs nationwide to make a diagnostics.  Of course this is not my area of expertise and therefore I would never tell you that Cyrex or other labs are legitimate or not, but the only thing I can tell you is that the tests that are offered for gluten sensitivity didn’t go through this vigorous validation process.

Are they bogus?  I’m not sure.  They may be very legitimate.  If they would undergo this process of validation and they would be confirmed to do what the lab claims that they do, then they will be fine.  But since they didn’t undergo this process, I can’t really answer your question.

Jennifer - It’s very reasonable. You know, I sit on the fence because Cyrex labs does something very specific and yet you see no one else doing what they’re doing.  I don’t know if they’re just really ahead of the curve or if they’ve made up some things.  I’m still trying to gather on my end where I stand and I’m not entirely certain.  I appreciate the honest response.

You talk a lot about the importance of getting tested for celiac disease, but for someone like myself who has been gluten free for a long time and when I was “diagnosed” with gluten sensitivity, it was never suggested to me to go get tested for celiac disease.  For someone in my shoes, what should they do?  Should they go back and get tested for celiac and if so, what would we need to do to find out definitively if we did have celiac.

Dr. Fasano - There are a lot of people in your shoes to tell you the truth and there are so many different reasons.  First and foremost, the blame must be put on the healthcare professionals that were not aware of these gluten-related disorders and didn’t give the right advice to patients who were struggling with their health.  And finally they were starting to independently look around and find out why they were sick. And when they realized that gluten could be the culprit and they ask themselves what to do about it… the answer was they need to go gluten free.  Well, the small print that people don’t read is that when you go gluten free, unfortunately these famous biomarkers and tests that allow us to place you in which part of the spectrum you are are gone.  When you go gluten free, these biomarkers go back to normal. So in cases like yours, doing the test for celiac disease would be useless because if you are celiac, these biomarkers are not positive anymore.

There are two possibilities – One, that you start all over again and expose yourself to gluten and then you start the process again.  Many people do not like to do that because they finally after many years of being sick find a solution to their problems? They don’t want to be sick again and so they don’t want to do that.  The other possibility is that because celiac disease is an autoimmune disease, we know that there are certain genes that you must have to develop celiac disease without which is nearly impossible to develop it.  The presence of those genes are not influenced by eating gluten, so generally in a situation like yours we generally suggest to our patients is “Well, let’s take a look and see if you have these genes.  If you do, then all bets are still on the table and you could still have one of the three forms of gluten reactions and then we have figure out where to go from there.  But if you don’t, we can exclude with great confidence that you have celiac disease and you need to consider and play the game as someone with gluten sensitivity.

alessio fasano gluten freedomJennifer - And say I or someone else wanted to go get checked for these genes, how would I or someone else do that?

Dr. Fasano - Oh a simple blood test that your internist or gastroenterologist can order. This was until the recent past that was only done by a special lab.  We set it up and we were the only lab to do this for a long time, but now any commercial lab can do it.

Jennifer - That’s great to know. I want to ask you about the microbiome and how that plays a role in celiac disease.  You have a really fantastic study that you’re working on and I’d love for you to talk a little bit about that and why it would be great for people to get involved.

Dr. Fasano - Yeah that’s another fascinating totally unexpected twist of what’s been an interesting journey.  Again until the recent past ,we thought that we had all the pieces of the puzzle together in how you come down with celiac disease.  It’s an autoimmune disease and we knew that you have to have this genetic predisposition as I just told you that you have to have certain genes. The second element of this recipe is the biomedical trigger that is mismanaged by your immune system because of it’s genetic makeup. In autoimmunity when you are exposed to these elements, rather than get rid of them, you start to attack your own body.

So we thoughts that we had everything under control and therefore when the two elements, the genes that you’re born with and gluten that is introduced in the diet, no matter who you are within the first year of life is when the autoimmune process is set up.  And that was our dogma until 2 or 3 year ago when we did a study that gave up results that were totally unexpected and out of the ordinary. It totally revolutionized this paradigm that we had created.

We had a large number of people, several thousand people, we followed over time… the same people with the same genes that they had.  And we realized that celiac disease in these people doubled every 15 years. Again these were healthy, normal adults.  The rate in the mid-80s was 1 in 150 and then in 2000, it was 1%. There were people who were eating gluten, which we know is indisputably the trigger for celiac disease, these old ladies  for 70 years and stay healthy.  Then all of a sudden, they lost the capability to tolerate gluten and therefore they switch from health (ie. tolerating the gluten) to disease (ie. mount a immune response that leads to celiac disease).

The question that we ask ourselves was “how’s that possible?”  What are the tricks that these two individuals used to tolerate what is the indisputable trigger of autoimmunity so that they stay healthy? Because if we learn how they did that, we can extrapolate to not only celiac disease, but anyone that is at risk of autoimmunity to keep them healthy for the rest of their lives.  The same question that leads to this microbiome business is “What happened to them that made them lose that capability to tolerate gluten?”  And that’s seems to be the change of the composition of the bacteria that lives in their bellies… what we call the microbiome.  This is a powerful cross-talk that we live with from birth to death that stuck with us all the time and that can really influence the if and how and when our genes are expressed that can really bring us to a different status — from peace between these two worlds to war, a belligerent interaction that will create damage.  When you’ve got a war, there is always collateral damage that we call inflammation that is related to the onset of celiac disease.

With that premise, we did a first pilot-study full of infants at risk of celiac disease from birth that indeed confirm that the microbiome has a great deal to do with if you stay health or not.  And now we are launching a mega-study that we want to include 500 of these kids called Celiac Disease Genomic Environmental Microbiome and Metabolomic Study or CDGEMM. This is a big worthy concept that we want to understand how this cross-talk between the patient and the bacteria that live with us is maintained in either a peaceful discussion (so to stay healthy) or when things go in the wrong direction and you lose tolerance and develop celiac disease.  The ambition is to find the crystal ball that will predict who will come down with the disease and intervene early so we can prevent it.

Jennifer - For parents who want to get involved, because I assume that from reading over the website, you’re really looking for babies to follow, correct?

Dr. Fasano - Yeah, that’s right. We definitely want to recruit babies that didn’t start baby food yet.  We like babies who are just born, like out of the oven, or are some who are just thinking about putting the baby in the oven. Another words, the very first recruits are still in pregnancy, so women who are still in pregnancy who are willing to be a part of the study.

Jennifer - That’s wonderful because I think it will really give a lot of answers and there are still so many questions around whether a Cesarian section affect how the microbiome is generated in a child. Is it important to have a natural birth?  And you know, sometimes people don’t have control over that and it is what it is.  But it is good to know what those risks are and where they begin.

I want to turn to talk about food because what I loved about your personal approach to eating — and I come from an Italian family and what I found was that there were so many foods that are naturally gluten free and when you eat a meal that happens to be gluten free, it tastes a lot better. It’s a lot healthier and no one misses anything.  They’re not like “Where was the bread?  Where was the pancakes?”  They just weren’t missing what wasn’t there in the first place. So do you agree, and obviously you write about it in your book, but what’s your feelings on how to eat in a way that mirrors your philosophy in Gluten Freedom?

alessio fasano gluten freedomDr. Fasano - Let me tell you that the way that food can affect our lives is that to follow up that we were discussing a C-section and that is important, but the most influential way to shape our microbiome and to stay healthy… we have to feed this bacteria and they eating the leftovers we don’t use.  So nutrition, particularly in the first two years of life seems to be instrumental to shaping the right microbiome. But because this is dynamic, this shaping of the microbiome to have a peaceful neighbor or a belligerent neighbor that continues to affect our lives it is important to look at the way we eat.

Everybody knows that for example, the Western diet is, or part of the Western diet or the “junk diet”, is creating a microbiome that’s much more prone to create inflammation and therefore disease. Now talking about the gluten free diet, again this brings us back two or three generations ago where we didn’t have pre-packed food.  Where everybody made everything fresh and where the produce that we put on our table came from our backyards. So the way in which our species evolved for the past 2.5 million years and what it was used to in terms of eating.  You know, we are witnessing an explosion of many new diseases in the last two or three decades and are really associated to differing lifestyles and how we feed ourselves.

I don’t want to leave you and who is listening to this that I am a proponent of going back to the caves and give up with modern life because that would be unfeasible.  But what I trying to say that everything can be done in moderation including trying to see if we can go back close enough to how our grandparents used to eat.  On one hand, people can see the glass half empty… that it’s a deprivation of goods while it can also be, for those who see the glass half full, an extremely rewarding experience.

As a matter of fact, you know, of course I am also Italian in terms of my background and there’s a part in the book where I cook the entire dinner from appetizers to dessert that’s completely gluten free using naturally gluten free products.  And honestly I have to say that it’s very tasty and it’s in line with the Mediterranean Diet that contrary to the general belief is not full of carbs, but is very balanced and can be very palatable without depriving of any good, fresh stuff that happens to be gluten free.

Jennifer - I agree with you 100% because my family cooks everything from scratch and I try to cook in the way that my grandparents and my great-aunts did.  That was really where I learned my love of food.  But for people… and this is always a question that I get and it’s touchy with the gluten free products… I think you can have them within reason, but for people who are eating a lot of gluten free products, a gluten free brownie is still a brownie, correct?

alessio fasanoDr. Fasano - Of course… no matter what, yes? And then, by all means if people want to achieve the goal and that’s the goal of Gluten Freedom… first of all, we want to distinguish between fact and fantasy and there are a lot of fantasies revolved around this gluten free world that I believe needs to be clarified. And the other thing that needs to be clarified is that the gluten free diet needs to be implemented in a way that improves the quality of life.

This is not a disease anymore because when you go gluten free, you aren’t sick anymore.  This is a condition and of course, you will come back if you’re exposed to gluten.  But we want to make sure that it’s not the individual that needs to bend the environment, but visa versa that that environment needs to bend to the individual’s needs so that the individual who has to eat the gluten free diet doesn’t need to feel left out, discriminated, or having problems in conducting things in typical daily life.

The other thing that I want to tell you that I can hear in the background particularly in women who have to attend to professional life and at the same time as their families and their needs, and it’s easy to say that you cook from scratch. But where is the time to do that because my life is juggling 25 balls up in the air and there are times when it becomes very convenient to me to take the tray out of the freezer section and stick it in the microwave and that’s my dinner.  You know, you’ve got to give me a break. True… all is true.  However, contrary to what seems to be the general wisdom, a good meal should not take hours to cook.  My grandmother used to say, “A good meal has to take 20 minutes and no more.”  Because if it takes more, with the exception for when you cook something special, that means it’s not a good meal to put on the table.

Jennifer - I love that! Your grandmother sounded like a wise woman.

Dr. Fasano - She was!

Jennifer - Well, any final thoughts on why people should go out and buy your book Gluten Freedom?

Dr. Fasano - First of all, as I mentioned before… since there are so many books that deal with gluten and the gluten free diet and recipes… they are all good books, but there is also a lot of confusion now where there is 1/3 of the population in the United States who will at some point consume gluten free products for reasons that may or may not be logical.  If you want to distinguish fact from fantasy, this is the book from gluten in terms of the center that made all this happen.  So you can really have good information.  Not just from second-hand like “I heard something and now I’m gluten free because I learned this from somebody else” – No… this is the real deal. And again, if you want to distinguish fact from fantasy, it’s there.  And there’s a little bit of personal touch there of the seven years of history and the spectrum of what is correlated in this book goes from very basic to very detailed with research so a pro like you can find stuff that will be interesting and a learning opportunity.  For someone who just got into this world, I believe this is the Gluten 101 that will give you the opportunity to not be confused, to understand where we were, where we are, and most importantly, where we are going with the future research in this world.  So again, I hope that you guys would enjoy to read it as much as Susie Flaherty enjoyed writing it.

Jennifer - Thank you so much!  The book is now available and it’s a fantastic read. It’s easy and breaks things down using analogies and simple visualizations that I think take it from a science-y and complex level to one that’s very easily digestible for all of us normal folk out there who are dealing with the stigmas of being gluten free, how to talk to your doctors and understand all the terminology and what not. Thanks so much, Dr. Fasano and I really appreciate it and I hope you’ll come back some time!

Dr. Fasano - Thank you, Jennifer!

Jennifer - Stay in touch with Dr. Fasano by visiting him on the web and you can also pick up a copy of his book called Gluten Freedom. It’s available on Amazon.  Remember to subscribe, rate and review this podcast and then head on over to Gluten Free School and leave your questions and comments on this podcast about what Dr. Fasano and I talked about.

Thank you guys so much for joining me and I look forward to seeing you the next time. Bye bye!

The links referred to in this episode are:

Gluten FreedomClick HERE to Buy it NOW! 

Alessio Fasano, MD – http://www.celiaccenter.org

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Comments

  1. says

    Jennifer – This was a GREAT talk with Dr. Fasano. The questions you asked were perfect for someone who has gotten a negative celiac diagnosis and weren’t sure what to do next. Dr. Fasano did a fantastic job validating that gluten sensitivity is a real condition!. Thanks for being the voice of the “sensitives!”

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