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It’s an honor to welcome Dr. Alessio Fasano as a guest on the show. Dr. Fasano is globally recognized for his pioneering research in the fields of Celiac disease and gluten intolerance. In 2003, he published the groundbreaking study in the Annals of Medicine that established the prevalence rate of celiac disease at one in 133 people in the U.S – a rate nearly 100 times greater than the previous estimate. He also headed up a team that discovered (in 2000) the ancient molecule zonulin, which regulates the permeability of the intestine and is know known to be a major player in the condition known colloquially as “leaky gut”.
Dr. Fasano has been featured in hundreds of interviews in media outlets such as The Wall Street Journal; NPR; New York Times Magazine; National Geographic, Bloomberg News; USA Today; Los Angeles Times; “Good Morning America”; The Globe and Mail; Vogue; and numerous health-related websites and magazines.
On a personal note, Dr. Fasano is one of my research heroes and his work has had a huge impact on my understanding of the gut and autoimmune disease. We’re extremely fortunate to have him as a guest on the show. I hope you’re as excited about this as I am!
In this episode, we cover:
3:26 How Dr. Fasano became interested in Celiac Disease, gluten intolerance, intestinal permeability, and autoimmune disease
Links We Discuss:
4:34 The trinity of factors leading to autoimmune disease
9:12 What zonulin is and how it contributes to intestinal permeability and autoimmune disease
13:35 How vaccine research unexpectedly led to the discovery of zonulin
18:08 Why some still consider leaky gut a “quack diagnosis”
22:27 How long does it take to get leaky gut? How long does it last?
27:05 The differences between Celiac Disease and gluten intolerance
31:45 What’s the best commercially available way to test for leaky gut?
38:25 Everything we’ve learned about restoring gut barrier integrity
40:00 Why Celiac Disease patients have increased zonulin levels, even on a gluten-free diet
41:22 An update on Larazotide, the intestinal permeability drug
46:23 Upcoming research developments to get excited about- Open Original Shared Link
Podcast: Open Original Shared Link | Open Original Shared Link
Steve Wright: Hi, and welcome to another episode of the Revolution Health Radio Show. I’m Steve Wright from Open Original Shared Link, and with me is Chris Kresser, health detective and creator of Open Original Shared Link. Chris, how are you feeling today?
Chris Kresser: You know how I’m feeling, Steve. I’m super excited. Today we’re gonna be interviewing Dr. Alessio Fasano, who is an absolute rock star in the world of gluten intolerance, intestinal permeability, and autoimmune disease, so I’m really excited.
Steve Wright: Yes, he is a superstar of research, and I’m ready with a pen and paper. This is gonna be an awesome, awesome show.
OK, well, Chris, I know you have a lot of questions to get prepped on, so keep working on those, and in the meantime, I’m gonna let the listeners know before Dr. Fasano gets on the air here that if you’re listening to this for the first time, if you’re new to the paleo diet, or if you’re just interested in optimizing your health, you’re gonna want to check out what over 10,000 other people have already signed up for. What is it? It’s Beyond Paleo. Now, Beyond Paleo is a free 13-part email series on Chris’ top tips and tricks for burning fat, boosting energy, and preventing and reversing disease without drugs. To get it, go over to Open Original Shared Link, and look for the big red box.
Chris Kresser: Dr. Alessio Fasano is a world-renowned pediatric gastroenterologist, research scientist, and entrepreneur. He founded the University of Maryland Center for Celiac Research in 1996 and has published more than 200 peer-reviewed papers and has filed more than 160 patent applications. Dr. Fasano leads a team of about 30 researchers in nine countries and has research partnerships with institutions around the world, and their work has led to the discovery in 2000 of the ancient molecule zonulin, which we’ll be discussing in the show, that regulates the impermeability of the intestine in a condition known as leaky gut, which of course, we have discussed a lot on this program. In 2003, Dr. Fasano published the groundbreaking study in the Annals of Medicine that established the prevalence rate of celiac disease at 1 in 133 people in the US, which is a rate nearly a hundred times greater than the previous estimate. Dr. Fasano has been featured in hundreds of interviews and media outlets such as The Wall Street Journal, NPR, The New York Times Magazine, National Geographic, USA Today, the LA Times, Good Morning America, and he has also been named as one of America’s Top Doctors by Castle Connolly for six consecutive years and was a finalist in 2005 for the NIH Director’s Pioneer Award. On a personal note, Dr. Fasano is one of my research heroes, and his work has had a huge impact on my understanding of the gut and its relationship to autoimmune disease. We’re extremely fortunate to have him as a guest on the show, so Dr. Fasano, thanks again for joining us.
Dr. Alessio Fasano: Thank you so much. It’s my pleasure.
How Dr. Fasano became interested in Celiac Disease, gluten intolerance, intestinal permeability, and autoimmune diseaseChris Kresser: So, can you tell us a little bit about how you got interested in celiac disease, gluten intolerance, intestinal permeability, and their relationship to autoimmune disease?
Dr. Alessio Fasano: Well, actually by default. I was not interested at all at the beginning, but I trained and graduated from the University of Naples in Italy, which was one of the sanctuaries of celiac disease, so I was immersed about celiac disease and related problems. So the by the time that I graduated, I got great exposure to this condition. I was fortunate enough to be in a very viable and vital environment and also to be fortunate that was the time in which our understanding of celiac disease moved from merely a food allergy to a real autoimmune disease. By the time that I moved to the United States in ‘93, I decided that that was one of the most intriguing conditions really to study to get to the bottom line or the mechanism that leads to autoimmunity.
The trinity of factors leading to autoimmune diseaseChris Kresser: Um-hum. So what’s unique about celiac disease as an autoimmune disease? You mentioned that in your article in Scientific American. I thought it was pretty interesting.
Dr. Alessio Fasano: Sure. I mean, you know, there are a few things that make celiac disease quite unique. A matter of fact, it opened a new paradigm of the science of autoimmunity. Like all autoimmune diseases, it has a recipe with two ingredients, so that’s not unique. You have to have genes plural so that you are genetically predisposed, and then you have to be exposed to an environmental trigger that is mismanaged by the immune system because of this genetic makeup. You know, the immune system is there to defend us against attackers. And in people, they are skewed to develop autoimmunity when exposed to these enemies rather than get rid of them, they start to attack their own body. The target is the brain, and you develop MS; the joints, rheumatoid arthritis; the pancreas, diabetes; and in the intestine, you develop celiac disease. What really sets celiac disease aside is, one, as concerns the genetic component, we know some of the genes involved. We know there are many, probably hundreds, but it’s unique in celiac disease that some of these genes that belong to a specific class called HLA genes, they are present in almost 100% of the people with celiac disease. There are these two forms of HLA called DQ2 and DQ8, and all celiacs — with very, very rare exception — they have either one or both. This does not happen with any other autoimmune diseases. For example, in diabetes, there are actually no genes present in 70%-75% of the population. Same story with multiple sclerosis. Here we talk about almost totality. We know in celiac disease the antigen, i.e. the part of our body that is the object of this attack, there is this enzyme called tissue transglutaminase (TTG), and therefore antibodies against this TTG are one of the best tools that we have in clinical biology to identify people with a problem with autoimmunity, in this case, celiac disease. But really, what sets celiac disease totally apart from any other autoimmune disease is the fact that it’s the only condition for which we know the environmental trigger. We don’t know what makes people sick with diabetes or MS, but it’s indisputable gluten, this strange protein contained in many grains, including wheat, rye, and barley, to be the culprit that leads to autoimmunity on that specific genetic background. That implies that celiac disease is the only autoimmune disease for which we have a treatment.
Chris Kresser: Right. And when was that discovered, that gluten was the trigger for autoimmune disease? How long have we known that?
Dr. Alessio Fasano: Well, you know, celiac disease was described for centuries, but the guy that put two and two together was a pediatric gastroenterologist from the Netherlands, Dicke, that made a very interesting epidemiological observation during World War II. He observed that mortality — because you could die of celiac disease at that time — for celiac disease dropped from 35%-40% to zero during the war. And then when the war was over, the mortality rate for celiac disease went back to pre-war era. And when he tried to understand what was the connection between the war environment and this swing in mortality, he realized that possibly it was the availability of grains containing gluten that really was changing in parallel. So during war, there was no wheat available, and flour was made with potato starch, and that was the time in which the mortality went pretty much to zero. And when after the war, gluten was again available, the disease came back. And that’s why in the late ‘40s and early ‘50s he switched the treatment in these babies, these infants, that was mainly focused on an elimination diet that contained only bananas — that is why these were called the “banana babies” — to a diet in which the only thing that was eliminated were grains containing gluten, and sure enough, that did the trick. And that’s how he figured out that gluten was involved.
Chris Kresser: That’s fascinating. So essentially the war forced people on to a gluten-free diet without knowing that that’s what they were doing, and that’s how they figured it out.
Dr. Alessio Fasano: That’s right.
What zonulin is and how it contributes to intestinal permeability and autoimmune diseaseChris Kresser: So when you mentioned the unique features of celiac disease, you mentioned genetic predisposition and then the existence of an environmental trigger, of course, in this case, gluten. So those are two of the trinity of factors that you talked about in your Scientific American article that lead to autoimmune disease. What’s the third factor?
Dr. Alessio Fasano: Yeah, that’s another lesson that we merely learn from celiac disease, because before, you know, the entire scientific community interested in autoimmunity was puzzled by how this interaction between the environment, i.e. these molecules like gluten, for example, and the immune system can really occur. Because in order for the immune system to react and produce an autoimmune response, it needs to physically see the enemy and eventually be in touch with these molecules to build this immune response. And under normal circumstances, that has not happened ever, because of all the interfaces with the environment, the largest and by far the more important is the GI tract, the gastrointestinal tract. And the way that we conceptualize the intestine, it is a long tube that is roughly 15-20 feet long in an adult that is covered by a single layer of cells, and that this is a formidable barrier to keep the bad guys, the enemies, bacteria, the toxins, but also elements that can trigger autoimmune response at bay, out of there. So the only way to come in our body is to be dismantled — so digested — and only the single-block elements of complex molecules like proteins, you know, complex sugars and so on and so forth, can come through so that the single blocks like amino acids or single sugars can eventually be used to fuel our energy needs. So the immunologists, experts in autoimmunity, they still didn’t how triggers — in general, proteins — may come through and create the problem on a specific genetic background, because under normal circumstances, the intestine is totally impermeable to these molecules. This was also based by a concept that was in the early/mid-‘80s still valid that this layer of cells were cemented to each other by a grout or something that would prevent anything to pass in between cells, so everything that comes from the environment through our body has to go through the cells.
And then in the mid-‘80s, a group of Japanese scientists said, well, actually the spacing between cells is not cemented. They are doors, almost always closed, but they are doors. And that was quite an interesting discovery. And then over the years, more and more information came about, you know, how these doors are made, but what was the missing link was what kind of molecule, substance, or signal or whatever would modulate these doors so they can be opened and closed. And that’s where we stumbled by mistake studying celiac disease that we make a molecule that we call zonulin that regulates the permeability of this space. And again, through celiac disease we learned that this molecule is produced in excess, in an exaggerated fashion, by people with celiac disease, now finally explaining the inexplicable, how this protein can come through, because now if you have this door stuck open, everybody from the environment can sneak into our body, including gluten, and with that, trigger the autoimmune response. So that led us to put forward this new paradigm in which the recipe for autoimmunity is made not by two, but three ingredients: You have to be genetically predisposed, you have to have an environmental factor that is the instigator of the immune response, but at the same time you have to have a breach of this barrier so these two elements can interplay.
How vaccine research unexpectedly led to the discovery of zonulinChris Kresser: Uh-huh. So you mentioned the protein that mediates the permeability of the tight junctions, which is zonulin. Can you tell us a little bit about how you discovered zonulin? I found that to be also really fascinating.
Dr. Alessio Fasano: Ha-ha, you know, all discoveries, including the breakthrough discoveries to date, rarely come by a planned design.
Chris Kresser: Right.
Dr. Alessio Fasano: Typically they are by serendipity. You know, a good scientist is the one that is trained to design the experiment, to perform the experiment in a correct fashion, and then eventually interpret the data. And you do this by formulating a hypothesis. And nine out of ten times, the outcome of the experiment is different from the hypothesis that you formulated.
Chris Kresser: Ha-ha, right.
Dr. Alessio Fasano: That’s the same way that the discovery of zonulin came about. I was studying something else. I was asked to generate and engineer a vaccine against cholera, this bacterium that is causing, travesty still nowadays during epidemics. A disease with a high mortality rate, particularly in kids. And this is all due to a weapon that cholerae produces, a very powerful weapon called cholera toxin. This toxin in miniscule amounts can cause liters and liters of diarrhea. So anyhow, bottom line, in the late ‘80s I was asked to engineer this vaccine by eliminating this weapon in cholera and generate a live attenuated vaccine. Now, I did that, and when all the studies proved that the vaccine was correctly designed and was working beautifully in animal models and so on and so forth, it was the time to try this in humans. And you now, we had volunteers, in general, they were students at that time, that for a ridiculous amount of money volunteered to go through the study. And we explained that the study was designed in a way that probably two out of three will be fine, because blindly they will either receive placebo, nothing, so they will just get the money to do nothing; the vaccine that I was absolutely convinced that was going to be nonreactive and therefore they also will be fine; or the real-deal cholera, and they will be getting sick, but we would take care of them.
Chris Kresser: Yeah, brave people!
Dr. Alessio Fasano: That’s right. Very, very brave. And sure enough, the placebo did nothing. The real-deal caused a tremendous amount of diarrhea, but thank God, nobody really got tremendously sick. But unfortunately, the vaccine that was engineered had residual diarrhea. So not 20 liters like the ones that got the real-deal, but 3 or 4 liters that made the vaccine unacceptable. So I was very upset. You know, years of work literally flushed in the toilet. And you know, I gave up. For a couple days, I decided not even to walk in the lab. And then when I regrouped I said, OK, there must be an explanation why there is residual diarrhea. And sure enough, we ended up discovering a toxin that had a very peculiar mechanism. It was indeed opening this gate in between cells, what they call the tight junctions, making the intestine leak. And when we discovered that, then we started to ask ourselves how this toxin works, and we got more insight on the mechanism. We realized that there was very complicated signalling and machinery in place needed to make this opening to occur. And my reasoning was I can’t believe that Mother Nature put this machinery just to be a target of a molecule that actually is making us sick. It’s more likely that Vibrio, as a smart bug, studied our physiology and produced something similar to a substance and a molecule that we use to regulate this gate, and that’s how we ended up over the years to discover zonulin. And from there, we realized that this leaky gut is not the premises of celiac disease but many other autoimmune diseases, so it explained the inexplicable.
Why some still consider leaky gut a “quack diagnosis”Chris Kresser: Right, so leaky gut, as you just mentioned, it’s a precondition to developing autoimmunity because without that, the immune system won’t even see the antigen and can’t mount an immune response. So up until pretty recently and actually in a lot of cases, my patients, when they go to their doctor and they ask the doctor about leaky gut, the doctor looks at them like they’re crazy and might say: Oh, you’ve been reading on the Internet too much. And yet there are hundreds, if not thousands, of papers in the literature published on intestinal permeability and its relationship with autoimmune disease and several other diseases. So why do you think there’s just skepticism in the mainstream medical community about leaky gut, and what changes have you seen in the acceptance of that condition over time?
Dr. Alessio Fasano: Well, you know, you have to appreciate that unfortunately besides the fact that people, they have preconceptions and so on and so forth, there is the objective fact that this term that actually I really don’t like of “leaky gut” has been used and abused — And I don’t want to classify people and be stereotyped here, but mainly, I should say, mainly by the alternative and complementary medicine network that had, in a visionary fashion, I should say, identified leaky gut as a possible mechanism leading to many problems. The problem, though, is that most of these statements were not based on factual evidence, to the point in which we went to the extreme to develop an entire field called leaky gut syndrome that had very few facts and a lot of fantasies, and that’s the reason why the traditional medicine establishment has been so skeptical for many years. Keep in mind that, again, this leaky gut, leaky gut syndrome was into the pipeline of alternative medicine even before the discovery of these doors. So no surprise that the establishment was skeptical, that this was something that had no merit whatsoever. And then, you know, as typically happens in life, in which there is no black and white, but there are grays, and we have these two camps that saw this topic as either black, it does not exist, it’s bogus, or white and it would explain all the problems of humankind.
Chris Kresser: Ha-ha.
Dr. Alessio Fasano: We end up to be more factual, and the discovery of the tight junctions, the discovery that they can be modulated, the clinical evidence that people may eventually have a breach in the intestinal barrier that is associated with autoimmunity. The Genome Project, they gave us the tool to search for specific genes associated to diseases, including autoimmune disease, that led to the discovery of some genes regulating this permeability being associated to autoimmune diseases until the discovery of zonulin, and now it’s used as a biomarker. Now you see also the establishment start thinking that there is some merit there. And therefore, the cloud of the confusion and this heated debate has been more gentle, if you wish, and now you have no extreme fields anymore. And still there is a lot of confusion.
Chris Kresser: Right.
Dr. Alessio Fasano: Still there are so many factors that we don’t know. And you still see people that may say that this is a fantasy or other people that say that if you don’t like the current government or the weather is not good, it’s because of the leaky gut syndrome.
Chris Kresser: Ha-ha.
Dr. Alessio Fasano: So that’s the reason why there is a lack of trust, if you wish, sometimes from the two camps.
Chris Kresser: Yeah. That makes sense. I wasn’t aware that leaky gut had been developed as a theory even before the discovery of the tight junctions. That’s interesting.
Dr. Alessio Fasano: Oh, yeah, but again, that’s the reason why it was visionary.
How long does it take to get leaky gut? How long does it last?Chris Kresser: Yeah, exactly. So let’s talk a little bit more about intestinal permeability and particularly the timing of it. How long does it take to appear once someone with celiac, for example, or even someone with gluten intolerance is exposed to gluten? And then how long can it persist after something like even just a single exposure to gluten?
Dr. Alessio Fasano: Well, this is one of the most intriguing parts of the topic here because, again, we only have partial evidence of how all this works. And two questions that are important are, who eventually regulates this permeability? And what can go wrong so that this tightly, tightly regulated mechanism goes out of control and then you have this breach of the barrier long enough to create a problem? And again, we’ve just started to have some sense and understanding of this because the other key element is corollary to what I just told you — is the breach of the barrier an epiphenomenon, i.e. it just happened to be there, or is it an integral part of the pathogenesis of these conditions? So that if you fix that, you can prevent the problem.
Chris Kresser: Right, so it is cause or correlation is another way of saying that.
Dr. Alessio Fasano: Exactly. So what we understand is that at least for the zonulin pathway — and I’m sure there are going to be many others if they physiologically control the permeability — there are two major stimuli that we found to release zonulin in everybody — everybody. If you have bacteria in your small intestine, where supposedly they should not be there because we’ve been built so that bacteria will be confined in our intestinal tract all in the colon at the very end, where there are no nutrients anymore so they cannot steal. But if there are bacteria, they eventually will be able to colonize the small intestine by going through all these layers of defense that we have been evolving with as human beings, like saliva, the gastric juice defending from almost all bacteria, pancreatic juice, bile, glycocholic — in other words, if this bacteria will go through all of this and will land on the epithelial cells of the intestine and start to sit there and steal nutrients that we ingest with diet, if we have one last thing that we can do to get rid of these guys, enterocytes, i.e. these epithelial cells, when colonized by bacteria, they release a large amount of zonulin. They open this space, water comes in from underneath the intestine into the lumen, will dilute the toxins produced by these bacteria, but at the same time will flush them out so that they will be moved out and removed from the small intestine. This is one stimulus. The other stimulus — and I believe that this is more by mistake of evolution rather than planned design as for the proximal bile contamination — is gluten itself. We identified two fragments, one of the gluten components, it’s called gliadin, that when introduced to epithelial cells they induce, like for bacteria, zonulin release. And this, again, happens to everybody. What is the difference between everybody and the people that develop a problem with gluten like celiac disease is that while for me, for example, because I don’t have a problem. I eat a Big Mac. I have gluten in there. These fragments release zonulin, which increases permeability. Stuff comes through, including gluten. My immune system that is tuned to do the job right will clean up the mess, and I will not even know that all that happened. Also because this open-and-close is short. It’s a matter of minutes that it will open and a matter of minutes that will turn to be closed. People with celiac disease, on the other hand, when they do something like that, not only do they have much more zonulin produced than I do, but also the opening is much more prolonged because these doors get stuck open, and therefore you give much more time for substances from the environment, including gluten, to come through. And now on this other side, you find this immune system that is not tuned to do the job right, and when they see this enemy, they start to mount an immune response to attack your own body, and that leads to celiac disease.
The differences between Celiac Disease and gluten intoleranceChris Kresser: OK, well, that’s very clear. Dr. Fasano, we’ve been talking so far about celiac disease, but we haven’t yet touched on the phenomenon known as gluten intolerance. Can you talk a little bit about the difference between the two and particularly in terms of pathophysiology?
Dr. Alessio Fasano: Sure, sure. Until the recent past, we were convinced that the only reaction that we have to gluten would be celiac disease, so this autoimmune reaction to gluten. Over the years, with the increase of awareness about celiac, with the increase of products in the market and with the popularity of what this gluten-free diet was all about, more and more people became aware of celiac disease and the gluten-free diet. Now, contrary to diabetes, in which the symptoms are very straightforward and clear, narrow, you know, you pee a lot, you drink a lot, you’re gonna have diabetes unless proved otherwise. You have MS, the symptoms, the neurological symptoms are clear. Celiac disease is a clinical chameleon, and the symptoms can really affect any organ or tissue in your body, but also they are very unspecific. It can go from a stomachache to fatigue to anemia to the tingling of your fingertips and so on and so forth, so you can imagine how many people will have these kinds of symptoms and how many of these people have been told: You know, there is nothing wrong with you if you have chronic fatigue. We’ll look into the reason why you have anemia, but we can’t find anything wrong, and you need just to take an iron supplement. When they start to learn that celiac disease can do that, they ask themselves maybe this is what is the problem. Some of these people, indeed, turn out to have celiac disease, and therefore are diagnosed and resolve the problem and so on and so forth. Some people eventually fail to be diagnosed with celiac disease because they don’t fit the criteria, but because they were desperate because nothing else explained their symptoms, they decide, despite the negative results, to try the diet no matter what. And some of them, sure enough, had their symptoms improved or completely resolved.
So as typically happens in these situations, it was from the grassroots that the problem really became a problem, because when we saw this critical mass of people come into our clinic, at the beginning we sent them away. We said, you know, you don’t have celiac disease. You have no reason to be on a gluten-free diet. But when we saw this phenomenon to take great proportion, we asked ourselves: Is that possible that all these people are nuts? Are they all responding as a placebo effect? So we started to dig into this situation a little bit more, and sure enough, we discovered that there is another form of gluten reaction that we don’t call gluten intolerance anymore because we went through a revision of nomenclature, but we call it gluten sensitivity. And it turns out to be an immune response to gluten not on an autoimmune basis like in celiac disease, not even on an allergic basis because we know that sometimes wheat can induce an allergic reaction like any other foodstuff.
Chris Kresser: Right.
Dr. Alessio Fasano: But it’s a different form of immune reaction that will create a minimal inflammation without damage of the intestine. And that caused the symptoms intestinally and extraintestinal that these people may eventually experience when ingesting gluten.
Chris Kresser: So in people with gluten sensitivity, they get some GI inflammation, but they don’t get the blunting and destruction of the villi as people with celiac disease get. Do they experience intestinal permeability at a lower level and for a lesser amount of time than celiac disease patients? Or is there no leaky gut?
Dr. Alessio Fasano: Yeah, probably they do, but it’s much more transient. And therefore, when we look for that, we don’t see what we see in celiac disease with this breach of the barrier that can be measurable for a long time and so on and so forth. So they probably experience what everybody does, so a transient increase in permeability but long enough to allow gluten to come through and be seen by the immune system that will generate an inflammatory response that’s not as severe as the one that’s typical of celiac disease.
What’s the best commercially available way to test for leaky gut?Chris Kresser: OK. So in your opinion, Dr. Fasano, what’s the best commercially available way to test for intestinal permeability? A lot of my listeners are interested and concerned about this. We have the lactulose/mannitol test, but I’m also wondering if you’re aware of Dr. Aristo Vojdani’s work in Cyrex Laboratories and what your opinion is on that test, which screens for antibodies to gluten and zonulin and actinomycin and lipopolysaccharide.
Dr. Alessio Fasano: That’s right. So you know, unfortunately none of these tests are validated. Who has interest in testing permeability is finding the conundrum of how to do this. The lactulose/mannitol test is the one that has been used for a longer time. It has been the only test that has been used for scientific purposes but not for clinical diagnosis, because doing that is a little bit finicky and complicated, even if there are labs and a commercially available test is provided, but you know, it’s very, very difficult to interpret that when you are not under tightly controlled conditions so to make sure that the patient takes the sugars, the urine is collected the right way, it’s sent immediately to the lab, you do the right HPLC and so on and so forth.
Chris Kresser: Right.
Dr. Alessio Fasano: And then there are much more gross and not sensitive tests, like for example, you can look for proteins that are lost in the stools that should not be lost, like alpha 1-antitrypsin that tells you you have a protein-losing enteropathy that implies that the intestine is leaking, but that is positive only in the most severe cases of leaky gut. Then of course, there are all these tests at Cyrex that you were mentioning now. You know, when you talk about antibodies against the components of the tight junctions, i.e. occludin and ZO-1 and so on and so forth, now you are talking about a small subgroup of conditions in which you have a breach of the intestinal barrier. Because in those cases, you have antibodies against the components of the tight junctions, and you don’t see these in all autoimmune diseases because the autoimmune response is not against the tight junctions in celiac disease, for example, but against gluten. So you can just have a change in functionality of the tight junction without having a problem.
Chris Kresser: Without an autoimmune response.
Dr. Alessio Fasano: That’s right. So in other words, when you have an autoimmune response against this component, it’s like you crush this door. You destroy the door. But you can also use a key and open the door without crushing it, and the final result is the same. So in looking at just those conditions in which the door is destroyed, you look at the subgroup of possible leaky gut situations. LPS, on the other hand, is a test in which you can tell there has been a breach in the barrier. Why? LPS is a component of bacteria. We know that bacteria are in the gut. And if this LPS is found in the bloodstream, that means that something went wrong, that there has been a breach in the barrier, and therefore this LPS is testimonial that the intestinal barrier gave in, allowing components of bacteria, like LPS, to be absorbed. Now again, besides the complexity to measure LPS in the bloodstream is not a trivial proposition, sometimes you have a breach of the barrier that can be still biologically significant but not enough to permit enough LPS to be absorbed in a quantifiable manner.
Chris Kresser: As a clinician, then, since it sounds like none of the commercial tests that are available are necessarily validated or even easy to interpret, is there any need to test for intestinal permeability? You know, from my perspective as a clinician, one of my benchmarks for whether I run a test is whether it will change the outcome of the treatment.
Dr. Alessio Fasano: Well, again, I’m biased in answering the question because, again, I’m among the people that believe that intestinal permeability is not epiphenomenon, an integral part of the problem. This is based on some animal studies that we have done and also on clinical trials of this anti-zonulin peptide that blocks permeability, so preventing gluten to come through and therefore preventing the reaction to gluten in people, like celiac people, that may be harmed by ingesting gluten. So I really do believe that it’s an integral part. That means that, you know, it will be a tremendous merit to have a biomarker of intestinal permeability because not only will it allow you to say: OK, I do have a problem here, that if fixed may eventually help me out to manage this condition, and I can manipulate this problem, I don’t know, if this is due to bacterial contamination, to use probiotics or molecules that will come in the pipeline that will help fix permeability. I mean, as you probably know, the literature is invaded by papers showing that probiotics can improve the leakiness of a gut and so on and so forth.
Chris Kresser: Um-hum.
Dr. Alessio Fasano: But also, and I believe even more importantly, is prevention. I mean, you know, we have seen, for example, that this regulation of zonulin prevents the onset of diabetes by years. We know that, for example, in the literature you can predict flare-ups of people with inflammatory bowel disease by looking at their gut permeability. Those with increased permeability are the ones that most likely will have a flare-up in the next few months, while the ones that have a normal permeability do not. So I believe that there is going to be a tremendous need to have validated biomarkers of gut permeability. We hope to have the zonulin ELISA assay that now is being developed by a major diagnostic company commercially available soon so that can be used for that purpose.
Chris Kresser: Oh, great.
Dr. Alessio Fasano: And I’m pretty sure that there are going to be others that will be developed and become available, including eventually a validation of the lactulose/mannitol test, the alpha 1-antitrypsin, and so on and so forth, when people will really appreciate the clinical validity to have such tests in the clinician’s office available.
Everything we’ve learned about restoring gut barrier integrityChris Kresser: Right. We’ve been talking about pathology and etiology so far. Let’s talk a little bit about treatment, and maybe you could tell us what we’ve learned so far about how to restore gut barrier integrity.
Dr. Alessio Fasano: Yeah, well, we mentioned it a little bit already. For example, of course, if we know the cause of the breach of the barrier, then we can remove the cause. And you know, if it’s gluten for gluten sensitivity or celiac disease, you remove gluten. If bacterial overgrowth or dysbiosis, eventually you fix the problem, either treating the bacterial overgrowth or with probiotics. If it’s genetic, it’s a little bit more complicated at that point because, again, it’s an intrinsic defect of the individual, so you need to eventually go after the genetic defect and try to fix that. For example, zonulin is an example. If you have a genetic defect that makes you produce more zonulin than you should, the only way that you can do that is eventually to use some mechanism to block zonulin’s effect on tight junctions and that kind of stuff. So it’s typically like any other treatment. Either you treat the symptom, in this case the leaky gut, by going after the problem or you treat the cause. If you know the cause, you remove the cause so that it will go away that way.
Why Celiac Disease patients have increased zonulin levels, even on a gluten-free dietChris Kresser: Um-hum. In one of your papers, you mentioned that celiac patients sometimes have upregulated zonulin levels even after they have adopted a gluten-free diet. Is that true only for celiac patients, or is it also true for other people with different kinds of autoimmune diseases?
Dr. Alessio Fasano: Yeah, so far, we have seen this, because we had enough data, in three autoimmune diseases. We have seen this in celiac disease and type 1 diabetes and multiple sclerosis. When we discovered what zonulin is all about in terms of genes, now we know that zonulin is the precursor of a molecule, a protein called haptoglobin 2, so we know what kind of molecule it is. And using that as a biomarker, we see that there are three major categories of conditions that see zonulin upregulated or present in a mutated fashion. These are autoimmune diseases, and besides the three that I just mentioned, it has been proven in Crohn’s disease, for example, and in another category there are tumors ovarian cancer, pancreatic cancer, glioma, these kinds of cancers, and then in diseases of the nervous system, including schizophrenia and autism.
An update on Larazotide, the intestinal permeability drugChris Kresser: You mention possibly pharmacological agents that would help block the actions of zonulin and prevent gluten from causing intestinal permeability. Can you give us an update on larazotide and how that’s progressing?
Dr. Alessio Fasano: Larazotide was, again, another serendipitous discovery. It’s a small peptide. It’s made by eight amino acids. And we don’t know yet for sure the mechanism of action, but what is the projected mechanism of action is that it binds to the zonulin receptor, so preventing zonulin to communicate with the cell to instruct the cell to open this shortcut of the tight junction. This molecule has been through an extensive preclinical evaluation and showing all these effects and so on and so forth, and since 2006, it has been in clinical trials through Alba Therapeutics, a spin-off company of the University of Maryland. So far, the molecule has been given to roughly 500 people with celiac disease, and what I can tell you is that, one, it’s been very safe, so there are no side effects whatsoever, and this was expected because the mechanism of the molecule is to stay outside the body and block zonulin in the intestinal lumen. Therefore, all the side effects that typically you have with molecules that come in our body are not served.
Chris Kresser: Right.
Dr. Alessio Fasano: And in terms of efficacy, so far it seems to be quite efficacious in preventing the symptoms that typically celiacs experience when ingesting gluten in their diet, so all the symptoms that typically they have are prevented by the use of larazotide. Also biomarkers of inflammation, the ones that eventually will create the problem that leads to symptoms, seem to be kept under control by this molecule, while celiac people ingesting gluten with no protection will have the increase of this inflammatory biomarkers.
Chris Kresser: Um-hum. So I know it’s impossible to make accurate predictions on this kind of thing, but can you give us your best guess on, if things go well, when this might become available to the public?
Dr. Alessio Fasano: I can’t. And the reason why is because I did before and was proved so wrong!
Chris Kresser: Ha-ha!
Dr. Alessio Fasano: Because I was so naive to believe that the limiting step was science. No, it’s not science. That is not true at all. The limiting step is purely and simply economical after you go through the first step of a clinical trial. The clinical trials are done in steps.
Chris Kresser: Yeah.
Dr. Alessio Fasano: There’s a phase 1 in which you just look for safety. And then you go for phase 2 that is efficacy of different [45:48]. And then you go in phase 3, they go in these big, large studies and so on and so forth. Average time to do all this is 15 years. Average cost is 1.2 or 1.3 billion — with a B — dollars.
Chris Kresser: Wow.
Dr. Alessio Fasano: Yep. And the efficiency: miserable. You start with a thousand molecules, and only two or three will go on the shelves in a drugstore.
Chris Kresser: Right, so obviously there has to be a big enough market to justify that expense.
Dr. Alessio Fasano: Well, if you don’t have a justifiable market, they don’t even start, because otherwise they will not have the return on investment.
Chris Kresser: Yeah.
Dr. Alessio Fasano: But once you start, you’ve done this analysis and there is a market that eventually can pay you your investment back, the problem is you move from one phase to another, you know, at the pace that is really dictated by availability of the money, what’s going in, and so on and so forth. So, all this to say who could have predicted the 2008 debacle of the clinical economy worldwide? And with that, the money to be invested in any kind of enterprise, including drug development, really dried out.
Chris Kresser: Right.
Dr. Alessio Fasano: And it slowed down tremendously the situation. Thank God, the molecule now is back in a clinical trial because money became available again. The molecule now is in phase 2B, where only 20 of the thousand will reach that level. So all this to say there is still room for failure because of the 20, only two will get there.
Chris Kresser: Um-hum.
Dr. Alessio Fasano: But also, how fast it will go there, assuming that the molecule will go through the scrutiny, it all depends on money availability. So it’s truly an economical situation. So if the economy would not tank again, maybe we’re talking about two or three years. If we tank again, God knows.
Upcoming research developments to get excited aboutChris Kresser: OK, well, we’ll keep our fingers crossed. Last question, Dr. Fasano. What developments in this field are you most excited about, and is there something that you feel is important that we haven’t touched on on this topic?
Dr. Alessio Fasano: You know, I really do believe that the best achievement for anybody that is involved in clinical research and translation of the research, is not to fix the problem when it’s there. It’s to prevent it to that it’s not gonna happen at all. So I believe that in this field the most exciting development is to try to understand how people may eventually develop celiac disease, because epidemiologically speaking, we know that you can develop celiac disease at any age right now. So there are people that develop celiac disease at 2 and people that develop celiac disease at 72. And because the corollary that we had was that you have to have at least these two elements, genes and gluten, to interplay to develop celiac disease, we were convinced, absolutely convinced, that the celiac disease autoimmune process starts in everybody when gluten is introduced in the diet in the first year of life. And we also explain the difference between who develops celiac disease at 2 or 72 with, you know, the way that the immune system reacts to gluten. If you have an aggressive immune system that will create inflammation right away and will put you over the edge right away, you develop celiac disease as a child. But if you have a slow-paced immune system, the critical mass of the damage can occur in many, many years, and you develop symptoms later on. We were convinced about that. That’s one of the dogmas that I thought would never, never, ever be put in discussion, and that was not the case. Two years ago, we did a study on 3000 adults, once again, a study designed for a totally different reason. We wanted to know of these 3000 people that had been followed over the years since the ‘70s, and 1%, that’s roughly what we think is in the general population the prevalence of celiac disease, 1% of them must have celiac. Let’s see how they move from no symptoms to symptoms over time and see if we can link that to any event in their lives so that we can understand what’s going on. We were shocked — shocked — to learn that celiac disease doubled every 15 years in this court. It was 1 in 500 in the ‘70s, 1 in 250 in the mid-’80s, and 1% in 2000.
Chris Kresser: Wow.
Dr. Alessio Fasano: That implied that there was something else that was going on here. We had two ladies that for 70 years-plus eating gluten had no problem whatsoever. They were tolerating gluten. No problem with ingesting gluten. Then all of a sudden, they lost this luxury and they switched from tolerance to immune response and developed autoimmunity in their late 70s. This implies two questions that really, I believe, is the most intriguing part of this entire story for the years to come: Number one, what kind of tricks did these ladies use to tolerate what is an indisputable trigger of autoimmunity for people genetically predisposed to celiac disease? We learned that we may have the holy grail to prevent autoimmunity in general. It is material for a Nobel prize. Number two, more feasible, is to answer the question, what happened to these ladies that after so many years lost that luxury and then switched from tolerance to an immune response? And here, I believe that the most likely answer is the microbiome, the bacteria that live with us in symbiosis, have to be the ones that made them to switch from tolerance to immune response.
Chris Kresser: Um-hum.
Dr. Alessio Fasano: So they had a friendly microbiome before, and then something happened to them — I don’t know. They got an infection, they took antibiotics, they changed their diet, whatever — And now rather than having a friendly neighbor, now they have somebody that is not in peace with this neighbor and starts to touch genes of the host that when expressed or repressed will put these people at risk to switch from tolerance to immune response and develop celiac disease at a later age. I believe that those are the two fields of great interest that I’m looking very much forward to learning a little bit more.
Chris Kresser: That is fascinating. And you also mentioned some preliminary research that suggests — and correct me if I’m wrong here — that if an infant avoids gluten for the first year of life, then the risk of celiac goes down by four-fold. Is that right?
Dr. Alessio Fasano: Well, you know, this is part of the corollary of what I just told you, because the idea is if indeed the game is not over, if indeed it is not destiny that you’re born to develop celiac disease because you have the genes, but destiny can be manipulated, the question is what can be done to eventually prevent or delay the onset of the disease. And one of the most debatable and far to be settled issues is time of introduction of gluten into the diet for whom is genetically predisposed. We know that introducing it too early will be harmful. This is well known. It’s settled. Everybody agrees on that. The question is, if we delay, can we do the opposite, delay or prevent celiac disease? And nobody has done anything like this so far because these are very complex and long and expensive studies. And we embarked on one of those in which we are recruiting neonates from families at risk and then we follow them over time, and at the time of weaning, because it’s a double-blind study, we blindly leave half on a gluten-free diet and half will be introduced to gluten, as it’s supposed to be based on the current recommendation of the American Academy of Pediatrics, and then we follow a time, asking as a primary question how many of the ones that were introduced early to gluten developed celiac disease compared to the ones that we postponed. Now, the data that you mentioned are correct, but the caveat here is that this is only a three-year follow-up. There is still the possibility that later on these kids will catch up, the ones introduced to gluten late.
Chris Kresser: Right.
Dr. Alessio Fasano: So, we don’t know yet if indeed you can prevent celiac disease by delaying the introduction of gluten. But at least I can tell you, based on the data that we have so far, that you can delay it. That is, I think, a good thing so that eventually these kids have more time to stay on a regular diet and enjoy the diet.
Chris Kresser: It doesn’t seem like there’s much downside to trying anyways if you have that predisposition.
Dr. Alessio Fasano: Yeah.
Chris Kresser: Dr. Fasano, thank you so much for joining us. It’s been an honor to have you on the show, and I wish you the best of luck in your future endeavors.
Dr. Alessio Fasano: I appreciate very much to be on your show, guys. Thank you so much for having me.
Chris Kresser: Take care.
Open Original Shared Link
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Thank you to all of those who posted. I started a gluten free diet again and am just wondering a few things. I've read online that even the smallest amount of gluten can be problematic, but if I'm wondering if that is true for everyone or just people with extreme sensitivity to gluten. Given that my blood test were negative and my biopsy was inconclusive, if I ingest a small amount of trace gluten in something is that really going to set me back? I ask because in order to evaluate my diet I need to know whether eating out at a restaurant where my food might come into contact with something harmful could really throw the entire gluten free diet off so that even if I go 2 months without eating gluten I could still be having problems resulting from the trace gluten. I'm not sure if I am making sense, but if anyone can give insight into this, I would appreciate it.
Some people can get a mere crumb of gluten filled food, and suffer agonies, while others don't feel anything, but have the same damage. Gluten is a protein that many humans cannot digest, and they affect the interior of the upper GI just as if the lining was burned. All the miniscule fingers that stick up from the intestines (villi) are burned off...often very patchily, so that even a biopsy can miss it.
Only 30% of the people who have a blood test actually are diagnosed for Celiac, but if you continue to have problems, you need to have your genes tested, and have gluten sensitivity testing done, which can be quite as bad as having Celiac in it's effect on the rest of your body, and the uptake of nutrients. And there are other foods you can have immune responses to, also, so you can't just through up your hands, and bear it.
Please, keep investigating...it's your health, not the Doctor's. Start a food and reaction diary...it is amazing what it points out that you would never suspect. And see a Nutritionist/Naturopath if the Doctors can't find an obvious answer. Your food is supposed to have the nutrition in it your body needs, but it sometimes has irritants that you don't need. And please...skip all processed food...it's filled with chemicals that no one knows is safe!
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Juicing green veggies is all that keeps me from constipation...not being used to the 'green' taste, I bought a basic juicer, and along with Romaine Lettuce, Head Lettuce, carrots, green peppers, cucumbers, celery, kale, red chard, asparagus, sugar snap peas, tomatoes, avocado, and mustard leaves (someof this stuff has to be processed with a food processor before being juiced - use plain cucumber juice with soft leaved veggies, process, then juice the remains), but to keep it palatable I added apples, pears and grapes to taste. Then, I slowly reduced the fruits, until I could handle the just the veggies. And as long as I drink 4 cups a day of the juice, I have smooth bowels that don't hurt, and don't burn, although they do look a bit green. I do not use a juice that eliminates all pulp, since it is the soft fiber bits that keep me going. Your juice should be a little bit smoothie/creamy in texture from the avocados and fruit, not just watery juice, and the natural oils there are great for you too.
I had to go off the fruit additives because of Type II Diabetes, and reluctance to take insulin or any other drugs I can avoid...technically my diabetes is food controllable, if a tad high overall (120 average).
Now, I am so hooked on the veggie juice, I dislike not having it as part of my diet, and when I run out, two days later my stools are stones again.
Worth a try.
Also, I add in liquid vitimins...ionic calcium, zinc, magnesium, potassium, liquid daily vitamins including all B's, and liquid trace minerals... yet I can tell I am mal-absorptive just by my nails...I eats tons of protein, and yet my nails show Onychorrexis, Median Nail Dystropy; Leukonychia, and more that I can't spell! I'm only on Day 4 of no gluten, so it will be a long while before I show some signs of healing.
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Yea I looked at that one too until I read the ingrediants. I'm taking the DIgestive Advantage Constipation Formula which doesn't contain gluten or dairy. It's the only thing that keeps me away from laxatives /:
Juicing green veggies is all that keeps me from constipation...not being used to the 'green' taste, I bought a basic juicer, and along with Romaine Lettuce, Head Lettuce, carrots, green peppers, cucumbers, celery, kale, red chard, asparagus, sugar snap peas, tomatoes, avocado, and mustard leaves (someof this stuff has to be processed with a food processor before being juiced - use plain cucumber juice with soft leaved veggies, process, then juice the remains), but to keep it palatable I added apples, pears and grapes to taste. Then, I slowly reduced the fruits, until I could handle the just the veggies. And as long as I drink 4 cups a day of the juice, I have smooth bowels that don't hurt, and don't burn, although they do look a bit green. I do not use a juice that eliminates all pulp, since it is the soft fiber bits that keep me going. Your juice should be a little bit smoothie/creamy in texture from the avocados and fruit, not just watery juice, and the natural oils there are great for you too.
I had to go off the fruit additives because of Type II Diabetes, and reluctance to take insulin or any other drugs I can avoid...technically my diabetes is food controllable, if a tad high overall (120 average).
Now, I am so hooked on the veggie juice, I dislike not having it as part of my diet, and when I run out, two days later my stools are stones again.
Worth a try.
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I can't say whether Enterolab is going to benefit those with easily diagnosed Celiac Disease...the people that are nearly dying from the symptoms.
Dr. Fine does not seem to be interested in the work that already tests for the A panel of the gene markers for Celiac, or the blood work/endoscopic procedures for determining damage on Celiac Patients. He's is testing for everything that the other doctors are not testing for, or won't test for.
From his own statements, Dr. Fine M.D. is discerning from his tests not the absolute guarantee of Celiac Disease such tests render to only 30% of those tested, but what is making a person feel rotten long before permanent damage is done, in the hope of arresting, or minimizing whatever situation is causing the problem.
As for his credentials...he does not appear to be some medtech scammer out to make all that he can get off the unsuspecting patient who has never been diagnosed with any problems until they get hit with Gluten touchiness.
Dr.Fine owns a Health/Nutrition place, EnteroLab, and has a 501C research facility...which argues for maximising his discoveries.
On the other hand, I've spent 42 years with doctors already that don't what they are doing, but my doctors own the new Hospital I must go to as well as a their own Sports Injury Rehab Center, so I figure that is how Doctors really make money. They don't get paid much by Insurance Companies these days.
Enterolab will test what I want them to test, rather than tell me to go, and "get used to it. There is nothing else I can do for you." That was a direct quote from one of my doctors.
EnteroLab is testing for everything that is an immune problem indicator, and all of that for only $1,047.00,
Including Crohn's Disease. That seems cheap to me, after so many years. My niece had to pay for an extended visit to Mayo Clinic to be diagnosed...I think she still owes them about $24,000.00
I already have two immune system problems, but I don't think it matters all that much to my doctors, especially since it take 17 years for a new discovery to be generally talked about in medical circles, and mine aren't even aware that my symptoms might not be IBS. They accept what the last doctor has said as a given, and then pat me on head as if I were a kindergarten student.
Please don't rule out a test for indicators as the first step towards a diagnosis after your doctors have said there is nothing wrong with you. And for the other Gene test, there is CyrexLab...who does a complete gluten blood panel, and full gene test, for about $250.00.
At that point you will know enough to get the doctors to do the right things.
Dr. Kenneth Fine
CURRENT PROFESSIONAL APPOINTMENTS:
Medical Director and Director of Operations
EnteroLab Reference Laboratory Owned by Dr. FIne
www.enterolab.com
Director of Operations and Director of Medical Research
Intestinal Health Institute 501C
www.intestinalhealth.org
Director of Operations and Chief Consultant
FinerHealth and Nutrition Owned by Dr. FIne
www.finerhealth.com
PREVIOUS APPOINTMENTS:
Attending Physician and Staff Gastroenterologist
Department of Internal Medicine, Division of Gastroenterology
Baylor University Medical Center, Dallas 1992-2002
Medical Director, Gastrointestinal Physiology Laboratory
Baylor University Medical Center, Dallas 1996-1999
Staff Researcher, Division of GI Research
Baylor University Medical Center, Dallas 1992-2000
Attending Physician, Staff Gastroenterologist
Dallas VA Medical Center 1992-1998
Clinical Assistant Professor
University of Texas-Southwestern Medical School 1992-2000
UNDERGRADUATE EDUCATION:
University of Missouri - Kansas City
Degree: B.A. - Biology
MEDICAL EDUCATION:
University of Missouri - Kansas City, School of Medicine
Degree: M.D.
POSTGRADUATE MEDICAL TRAINING:
Internal Medicine Internship And Residency: 7/1/86 - 6/30/89
Baylor University Medical Center, Dallas
Gastroenterology - Research And Clinical Fellowship: 7/1/89 - 6/30/92
Baylor University Medical Center, Dallas
MEDICAL LICENSES:
Missouri
Issued - August 1986
Texas
Issued - July 1987
LICENSURE EXAMINATIONS:
National Board of Medical Examiners
Part I 1983
Part II 1985
Federal Licensure Examination 1987
Texas Medical Jurisprudence Exam 1987
BOARD CERTIFICATION:
American Board of Internal Medicine
Internal Medicine 1989
Gastroenterology 1993
RESEARCH GRANT AWARDS:
1990 Biomedical Research Support Grant - National Institutes of Health
1994 Smith Kline Beecham Clinical Research Award -
American Gastroenterological Association Foundation
1997 National Institutes of Health RO3 - Treatment of Microscopic Colitis
MEDICAL JOURNAL EDITORIAL BOARD POSITIONS:
Peptide Therapy: Index and Reviews 1997 - present
Baylor University Medical Center Proceedings 1996 - 2000
COMMUNITY SERVICE ACTIVITIES
Religious Singing for Local Synagogues 1993-present
Medical Advisor to Local CSA Celiac Sprue Support Group 1994-present
Email correspondence with online Microscopic Colitis Newsletter Support Group 1999-present
Organized and run a neighborhood organic produce co-op 2000-present
PUBLICATIONS:
JOURNAL ARTICLES
Zarabi CM, Huntrakoon M, Fine KD. Disseminated rhabdomyosarcoma of the urinary bladder in an adult. Southern Med J 1987;80:526-529.
Fine KD. Arthritis in the elderly, is it degenerative or rheumatoid? Baylor University Medical Center Proc 1988;1:25-34.
Hammer HF, Fine KD, Santa Ana CA, Porter JL, Schiller LR, Fordtran JS. Carbohydrate malabsorption. Its measurement and its contribution to diarrhea. J Clin Invest 1990;86:1936-1944.
Fine KD. Benzodiazepine withdrawal. Baylor University Medical Center Proc 1991;4:27-30.
Fine KD, Santa Ana CA, Fordtran JS. Diagnosis of magnesium-induced diarrhea. N Engl J Med 1991;324:1012-1017.
Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Intestinal absorption of magnesium from food and supplements. J Clin Invest 1991;88:396-402.
Fine KD, Fordtran JS. The effect of diarrhea on fecal fat excretion. Gastroenterology 1992;102:1936-1939.
Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Effect of D-glucose on intestinal permeability and its passive absorption in the human small intestine in vivo. Gastroenterology 1993;105:1117-1125.
Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Mechanism by which glucose stimulates the passive absorption of small solutes by the human jejunum in vivo. Gastroenterology 1994;107:389-395.
Emmett M, Hootkins RE, Fine KD, Santa Ana CA, Porter JS, Fordtran JS. Effect of three laxatives and a cation exchange resin on fecal sodium and potassium excretion. Gastroenterology 1995;108:752-760.
Fine KD, Solano M, Polter DE, Tillery GW. Malignant histiocytosis in a patient with hepatic dysfunction and peliosis hepatis. Am J Gastroenterol 1995;90:485-488.
Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Effect of changing intestinal flow rate on a measurement of intestinal permeability. Gastroenterology 1995;108:983-989.
Wenzl HH, Fine KD, Schiller LR, Fordtran JS. Determinants of decreased fecal consistency in diarrhea. Gastroenterology 1995;108:1729-1738.
Fine KD. The prevalence of occult gastrointestinal bleeding in celiac sprue. N Engl J Med 1996;334:1163-1167.
Wenzl HH, Fine KD, Santa Ana CA, Porter JL, Fordtran JS. Effect of fludrocortisone and spironolactone on sodium and potassium losses in secretory diarrhea. Dig Dis Sci 1997;42:119-128.
Fine KD, Byrd TD, Stone MJ. Successful treatment of chronic severe neutropenia with weekly granulocyte-colony stimulating factor. Br J Haematol 1997; 97:175-178.
Fine KD, Meyer RL, Lee EL. The prevalence and causes of chronic diarrhea in treated celiac sprue. Gastroenterology 1997; 112:1830-1837.
Fine KD, Lee EL. Efficacy of open-label bismuth subsalicylate for the treatment of microscopic colitis. Gastroenterology. 1998; 114:29-36.
Fine KD, Sarles HE, Cryer, B. Investigation of diarrhea caused by mesalamine in a patient with chronic non-granulomatous enterocolitis. N Engl J Med. 1998;338:923-925.
Fine KD, Ogunji F, George J, Niehaus MD, Guerrant RL. Utility of a rapid fecal latex agglutination test detecting the neutrophil protein, lactoferrin, for diagnosing inflammatory causes of chronic diarrhea. Am J Gastroenterol 1998;93:1300-1305.
Gruy-Kapral C, Emmett M, Santa Ana CA, Porter JL, Fordtran JS, Fine KD. Evaluation of cathartic-resin therapy for management of hyperkalemia. J Am Soc Nephrol 1998;9:1924-1930.
Fine KD, Meyer R, Lee EL. Colonic histopathology in untreated celiac sprue and refractory sprue: Is it lymphocytic colitis or colonic lymphocytosis? Human Pathology 1998;29:1433-1440.
Fine KD, Ogunji F, Florio R, Porter J, Santa Ana C. Investigation and diagnosis of diarrhea caused by sodium phosphate. Dig Dis Sci 1998;43:2708-2714.
Fine KD, Schiller LR. AGA technical review on the evaluation and management of chronic diarrhea. Gastroenterology 1999;116:1464-1486.
Fine KD, Stone MJ. Alpha-heavy chain disease, mediterranean lymphoma, and immunoproliferative small intestinal disease:a review of clinicopathologic features, pathogenesis, and differential diagnosis. Am J Gastroenterol 1999;94:1139-1152.
Fine KD, Nelson AC, Mossburg A, Ellington RT. Comparison of the color of fecal blood with the anatomical location of gastrointestinal bleeding lesions: potential misdiagnosis using only flexible sigmoidoscopy for bright red blood per rectum. Am J Gastroenterol. 1999;94:3202-3210.
Fine KD, Seidel RH, Do K. The prevalence, anatomic distribution, and diagnosis of colonic causes of chronic diarrhea. Gastrointest Endosc. 2000;51:318-326.
Fine KD, Ogunji F. A New Method of Quantitative Fecal Fat Microscopy and its Correlation with Chemically Measured Fecal Fat Output. Am J Clin Pathol. 2000;113:528-534.
Fine K, Lafon G, Ogunji F, Do K, Schulte K, Osowski L, McCormack J, Guerra R. High Prevalence of Celiac Sprue-Like HLA-DQ Genes and Enteropathy in Patients with the Microscopic Colitis Syndrome. Am J Gastroenterol 2000;95:1974-1982.
Fine KD, Ogunji F, Saloum YA, Beharry S, Crippin JS, Weinstein JS. Celiac Sprue: Another Autoimmune Syndrome Associated with Hepatitis C. Am J Gastroenterol 2001;96:138-145.
CHAPTERS
Fine KD, Krejs GJ, Fordtran JS. Diarrhea, Chapter 20 in Sleisenger MH, Fordtran JS. Gastrointestinal Disease. Pathophysiology, Diagnosis, Management, 4th Edition. Philadelphia, W. B. Saunders Co., 1989.
Fine KD, Krejs GJ, Fordtran JS. Diarrhea, Chapter 49 in Sleisenger MH, Fordtran JS. Gastrointestinal Disease. Pathophysiology, Diagnosis, Management, 5th Edition. Philadelphia, W.B. Saunders Co., 1993.
Fine KD, Schiller LR. Diarrhea. In: Consultations in Gastroenterology. Snape W Jr, ed. Philadelphia, W.B. Saunders Co. 1996.
Fine KD. Diarrhea, Chapter 10 in Feldman M, Scharschmidt BF, Sleisenger MH. Gastrointestinal Disease. 6th Edition. Philadelphia, W.B. Saunders Co., 1998.
ABSTRACTS
Fine KD, Santa Ana CA, Porter JL, Schiller LR, Fordtran JS. Evaluation of passive glucose absorption in the human jejunum in vivo. Gastroenterology 1991;100:A685(Abstr).
Brandabur JJ, Fine KD, Loeb PM, Miranda S, McCarthy JH. Pancreaticoduodenectomy - better results than expected. Gastroenterology 1991; 100:A352(Abstr).
Fine KD and Lee EL. An Open Label Trial of Bismuth Subsalicylate for the Treatment of Microscopic Colitis. Gastroentrology 1997; 112: A362 (Abstr).
Fine K, Ogunji F, Lee E, Lafon G, Tanzi M. Randomized, Double-Blind, Placebo-Controlled Trial of Bismuth Subsalicylate for Microscopic Colitis. 1999; 116: A880 (Abstr).
Fine K, Lafon G, Ogunji F, Do K, Schulte K, Osowski L, McCormack J, Guerra R. The Genetic and Histopathologic Relationship of Microscopic Colitis and Celiac Sprue or Refractory Sprue. 1999; 116: A879 (Abstr).
Fine KD, Ogunji FO, Saloum YA, Beharry SL, Crippin JS, Weinstein JW. Celiac Sprue: Another Autoimmune Syndrome Associated with Hepatitis C. Gastroenterology 2000;118:A697 (Abstr).
LETTERS IN RESPONSE TO JOURNAL CORRESPONDENCE
Fordtran JS, Fine KD. Sodium-glucose cotransport and epithelial permeability. Gastroenterology 1994;107:319-324.
Fine KD. Occult gastrointestinal bleeding in celiac sprue. N Engl J Med 1996;335:752-753.
Fine KD. Chronic diarrhea in treated celiacs: Are they really celiacs? Gastroenterology 1998;114:420-421.
Fine KD. Microscopic and collagenous colitis in treated celiac disease due to food allergy? Gastroenterology 1999;116:778.
Fine KD. Colonoscopy and Chronic Diarrhea. Gastrointestinal Endoscopy 2000;52:589-590.
EDITORIALS
Small Bowel Enteropathy in Patients with Microscopic Colitis: Is It Gluten-Sensitive? J Clin Gastroenterol 2001;32:193-195. -
There are a ton of things that can be a part of what is wrong with you...I am about halfway through a massive book called "Why Isn't My Brain Working" by Dr. Datis Kharrazian, which goes over all the links between Gluten Sensitivity/Celiac Disease and other things that the body does with the antibodies to gluten, and related foods, and then how that inter-reacts with your digestive system, brain, and vagus nerve, messing up how your brain is communication with your gut and vice versa, and even how the same gluten anti-bodies can attack other things in your body. Ton's of info and good explanations about how some things can just flat out interrupt the directions your digestive system receives from your brain, how your hormones will mess things up, how stress makes things worse, and sometimes better.
You can download it at Amazon Kindle for $10.00. I already found out all the things that I will need to watch for after my tests are back, even though I have already gone off gluten and dairy, and found a lot of things that I may need to eliminate one by one until I am well, because of the other problems I already have.
It seems that once you have gone gluten free for long enough to let your digestion heal, and your body still doesn't actually seem to be healing, there are a lot of other things that you may need to eliminate, one by one, or get tested in order to find out what other supplements and herbs can help you heal specific things.
Since you are not yet receiving much relief just going on a Paleo Diet, the book lists a lot of tests that can be done to check for problems related to, but not triggered by gluten, but by some things that are in a Paleo Diet, or are problems in other parts of your body because of the Celiac that just haven't been tested for, since there are a lot of finer points in testing to go after once you have made your maximum adjustment to a gluten free lifestyle, and are still sick. There are also many supplements listed on a problem by problem basis to talk to your Doctor about, or to a Nutritionist.
I hope you find your answers soon.
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I did not want to go through the hassle with my doctor to get a diagnosis...getting referred here and there, and then only blood tests, which only show Celiac when its really throwing antibodies into the blood, when not all Celiac diagnoses have antibodies in the blood.
I have decided to start out with the EnteroLab, and ordered everything on their menu...as I want to rule out everything they can test for except for acute colitus, since I am not bleeding into my stools.
They are testing me for antibodies for:
Celiac showing in the genes...only one panel, but I can get the other later.
Gluten (gliadin)
Tissue Transglutaminase,
Oat protein
Dietary yeast Saccharomyces cerevisiae (as a test for Crohn’s Disease),
Milk,
Egg,
Soy,
Corn,
Rice,
Sesame Seed,
Garbonzo Bean
Almond
Cashew
Walnut
White Potato
Pancreatic Elastase Stool Test (Fecal Elastase),(enzyme production function of the pancreas)
Intestinal Malabsorption Stool Test (Quantitative Fecal Fat Microscopy), (whether gluten sensitivity or another cause has impaired digestion and/or absorption of nutrients)
Triple Parasite Stool Test (Enzyme Immunochromatography Test for Amoeba, Giardia, and Cryptosporidium)
Beef
Chicken
Pork
Tuna
However, I plan to take the results into my doctor, and see what he says to what shows...I already have two auto-immune diseases...Diabetes Melitus II, and Fibromyalgia, and my niece is positive for Celiac, although she had to get to the Mayo Clinic to get a diagnosis, so my likelihood of sensitivity to gluten is high, while Celiac may not show until I get deathly ill, and I'm not waiting for that.
I think of all the bad years I've had because of bad digestion, and everything that is wrong with me relates to other things that are wrong with me, so going to my doctor without some ammunition is pointless for me.
But even if nothing shows, it will rule out a lot, and that is what I am paying for. The gluten free diet is a given at this point...after a week of on wheat one day, and off the next, I can definately tell gluten bothers me significantly, as does milk.
I ordered the tests today, and also went gluten free today as there is no difficulty about the stool sample not showing sensitivity to gluten if the antibodies are there...it is not however something you might want to do if you are not already showing strongs signs of multiple sensitivities, which I have been collecting since 1st grade. 42 years of increasingly bad health should have been noticed by somebody, had they cared to look.
The entire full set of tests costs $1,047.00 as a package deal...not cheap, but aimed at what I need...information.
My doctor may be unimpressed, but then, none of my doctors have ever been impressed by my constant, and increasingly difficult health challenges, nor diagnosed much of anything until it shows up blatantly in my yearly physical.
For those looking for just proof of gluten sensitivity, the basic test runs $250.00.
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My twins are in preschool and I volunteered the other day and noticed they made colored pasta but forgot to inquire about it. My son has NCGS but thus far I haven't restricted play doh, pasta crafts, etc but he reacted so this morning at breakfast I asked what it was and if they washed their hands well afterwards. My daughter wouldn't tell me and was extremely hesitant to answer what it was and it hit me it was a mother's day craft. I told her if she didn't want to tell me she could tell her dad and she did in front of me, which was super cute. They made mother's day necklaces out of dry pasta! The school and teachers know I have Celiac. I volunteer weekly there and I was very sick and when I was finally diagnosed they asked me all kinds of questions. I know pasta on the skin can't be absorbed but putting a pasta necklace on is just too much for me if it touches my lips while going on I will react. I cried realizing that my kid's made this for me and they wouldn't understand why I couldn't wear it. They know mommy is "allergic to bread and pasta" but at 4 that's about all they can comprehend. My mother's instinct tells me to just wear it and deal with the issues but the anxiety that is induced about wearing a ring of gluten around my neck is huge. I sent a tupperware box to school with instructions to place necklaces inside and wipe down the outside of the box and place it in my daughter's book bag only. Our entire house is 100% gluten free I can't have CC or crumbs from a shattered dry pasta floating around in my kids book bags.
This is the first time I've cried over my diagnosis. In fact I've often considered celiac the autoimmune lottery winner of diseases but this hurt so bad. Am I overreacting?
Got to Home Depot or a Craft store for clear spray paint or sealer...comes in gloss and matte! Hold it on a pencil to spray...dries very quick!!!
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After 20 days of intermittent GI issues, I decided to go to the doctor. It was the same doctor who originally tested me for celiac. I told her that I went gluten free for six weeks but stopped because I’d suddenly developed gut problems in the fifth week that hadn’t gone away.
None of the foods I’d been eating seemed singularly responsible for my gut issues and my issues weren’t entirely new – just worse and far more frequent than they’ve ever previously been.
I sort of cringe to recount this because I know she means well but I’m not sure everything she said is accurate.
She told me I have IBS.
She tried to put a positive spin on it by telling me that, while inconvenient, at least IBS doesn’t progress to any worse digestive problems. She thinks drastically changing my diet to eliminate gluten may be what set it off.
I explained that I had tried gluten free because of the positive gliadin IgA result and she said she could understand my motivation. She didn’t say whether or not she thinks I have non celiac gluten sensitivity though.
She told me that I need to keep a ‘stable’ diet to avoid problems. Basically I should find what foods keep me relatively well and stick to them while also keeping variety in my diet. (How do I eat the same things all the time but still get variety? This seems like a zen koan.)
She went on to say that going gluten free cuts out a lot of variety and fiber. (I told her that I started taking extra fiber supplements and eating more beans when I went gluten free to try to maintain my level of daily fiber. My comment didn’t make any difference.)
She advised against my going gluten free again. She pointed out that it is an incredibly hard diet to maintain and that gluten sensitive people don’t suffer the intestinal damage that celiacs experience. Since I wasn’t experiencing horrible symptoms before going gluten free, the diet would not benefit me.
Instead she recommended that I take a probiotic, more fiber, and “Go have a nice bagel.”
At this point I'm pretty turned around. I know IBS is kind of a throwaway diagnosis that is given when doctors can't or won't figure out what is actually wrong. On the other hand, my symptoms got worse while I was gluten free so maybe she's right and I shouldn't worry about eating wheat? I'm so confused.
Drop the fiber and the beans...they aggravate stomach symptoms for IBS sufferer's, and no doubt for anyone with disrupted digestion. Then, after you stabilize, add the beans back slowly, or switch to small amounts of raw salad veggies, blended in a blender for an easy fiber drink. (Lettuces, celery, green peppers, carrots, avocado etc....but skip the tomatoes for a while!) But stay away from Cabbage...very aggravating to a touchy tummy unless cooked really soft. Avoid citrus fruit and drinks! And please don't add fiber that is not a food you are eating. Most of what they sell is not meant to be digested at all!
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Welcome, Questore! Check out our newbie thread and the others linked to you by GFinDC, and you will see that all fresh fruits and vegetables are gluten-free, so you can eat potatoes safely. Regular oatmeal at the store is gluten contaminated, but certified gluten-free oats are readily available. I get the big bag of oats from Bobs Red Mill, kept in the freezer, and I make batches of oatmeal to eat for breakfasts. Remember to not only look out to avoid sources of wheat, but barley, rye, and non gluten-free oats as well.
Thank you, Laura...that helps. I cleaned out my entire kitchen, and moved everything tainted to a back room for storage for a later giveaway...I have a ton of dried foods in my pantry that I may not ever eat now.
Do you keep oats in the freezer to avoid mold? Or the batches of oatmeal in the freezer?
Are you eating gluten free oatmeal? Oats are often contaminated with wheat.
Well, Laura just told me only Red Mill, so I am ordering it. Hopefully, the oats that I have for long term storage are not contaminated, but there is no way tell without trying them after I've been gluten free a while to get an idea. I may just give them away too, until I have a guaranteed bulk supplier for dry long term storage.
Questore, I only realised I had an issue with gluten after I'd removed it from my diet. I wish I'd been tested before then as I'm now facing a long and probably deeply unpleasant gluten challenge. If I were you I'd ask for the blood test before removing it from your diet, but wish you luck whatever you choose
Thank you, JMG! My doctor is not one to give out blood tests for the asking, but when he does, he then reacts as if I have yet another disease that needs to be checked monthly! And if I have another disease, he gets worse. He's a good guy, but bugged a lot by what the authorities over him require. To him, gluten will just be another allergy that I have, to be marked down on my records, but unimportant otherwise. With PTSD, I avoid driving and towns, which is why I am avoiding the medical route. It's not a whim...instead more of a preferred strategy.
As for a gluten challenge...if I need it that badly, I'll go for the embaressing rectal one.
I have found over the many years of fruitless medical tests that if you already cannot be diagnosed, you have to do the diagnosing yourself, and then negotiate with your doctor if you require proof.
I just don't really see what good proof of yet another disease will get me at this point. But I thank you for the concern, and the kind words.
I understand that most people needing diagnosing are at the beginning of their journey of coping with a health problem, not two thirds of the way through a life filled with them.
Having had bad IBS for 40 years, and lot's of other stuff added on, I am yet healthier that I was 3 1/2 year ago when I began juicing heavily to get the nutrition...it's just that I am not making any more progress, so I know it has to be something else in my diet, and gluten fits better than anything else.
I split this out to its own topic. I thought the OP might get more help in his/her own topic rather than tagging onto a dormant one.
Thank you, Karen. I don't even think I remember where I posted this originally...I get lost easily!
Hi Questore,
Welcome to the forum!
It's ok to go gluten-free before testing, but it may make testing later difficult. If you did decide to get tested for celiac disease later, you'd have to resume eating gluten and eat it for up to 3 months. That can be very unpleasant if gluten is a problem for you. But if you aren't interested in testing, then going gluten-free now is fine.
Going gluten-free isn't an instant fix to symptoms for many people though. So you should plan to stick with it for 6 months to a year and half. Really a year minimum is best. It takes time for the immune system to settle down after removing gluten, and for the gut to heal. That doesn't mean there isn't a possibility of symptoms relief early on, but it varies with people. You'll probably get more responses if you post a new thread.
Even if you aren't celiac, eating whole foods instead of processed foods may help your body. You will be avoiding a lot of preservatives, color enhancers, emulsifiers, soy, etc by staying away from processed foods. Some people have reactions to those things.
Some starting the gluten-free diet tips for the first 6 months:
Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.
Helpful threads:
FAQ Celiac com
Newbie Info 101
Wow...a lot of great ideas!
Get tested before starting the gluten-free diet. I'll wait, but I know what I face if I don't. Embaressment!
Get your vitamin/mineral levels tested also. That I will ask for!
Don't eat in restaurants I never do anyway, but if I have to I'll get a steak and a baked potato...and pray!
Eat only whole foods not processed foods. Easy...hardly ever do anyway, and what I had all had Wheat in it, and is long gone.
Eat only food you cook yourself, think simple foods, not gourmet meals. I'm not much of a cook anyway...I've been eating very plainly since I got diagnosed with IBS 40 years ago.
Take probiotics. Will Do!
Take gluten-free vitamins. Will Do!
Take digestive enzymes. Will Do!
Avoid dairy if it causes symptoms. I rarely ever use it...I even avoid the cheese sauces except as a major treat...and usually regret it..
Avoid sugars and starchy foods. They can cause bloating. What is bloating?
Avoid alcohol. Okay
Watch out for cross contamination. Definately
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Thank you, I like hearing stuff like this(: ANd thank you for not jumping on the band wagon and telling me I'm getting cross contamined when I even got a blood test to prove that wrong.
It's just... I'm only 17 and these symptoms appeared so suddenly. My doctor even said that the healing process would be quick for me due to my age and the minial damage done to my intestines. Yet, I've been gluten free for over 4 months and I feel worse...
Do you know of any complications from Celiac Disease that could still be causing me suffering?
Everything related to any autoimmune condition will get you new flare ups of problems that come out of no-where. They aren't complications, in the meaning of something getting worse. It's a good deal more likely that other parts of your body were suffering for a long time from lack of good nutrients and kind treatment to your body.
It rather depends on what syptoms you have suddenly showing up, in combination with any other symptoms you already had; the way the stress is hitting you (and we all beat ourselves up so much during the anger and grief of finding out something is really wrong with us, because down deep we are blaming ourselves for what happened, even though we may have done nothing to make it happen.) It's about knowing if you have been sleeping, and how long, who you argued with, and what about, what you ate, and how you felt; and so forth.
In a couple of years, you will have a track record to look back on, and see all the problems, and how they act on each other, and what you can do, if anything, to make it better.
But at 17 you don't want to hear that it will take a long time to figure out your version of the disease, and what other surpises your body has in store for you during the healing time.
I am not a diagnosed celiac disease, but I have everything that seems to resemble it, or lead to it, or from it. At 19, all of a sudden I started vomiting, and couldn't stop. 6 days in the hospital, and fluids, and a pill that helped control excess stomach acid helped, as did the valium...but I could keep nothing much down, not even the pills, and had constant dry heaves and diarrhea until there was nothing in me. And then even water would make me sick. I lived on sips of Diet Pepsi, until I could keep some mashed potatoes down. It was two years before I could eat much of anything...potatoes, oatmeal, some crackers...and no one even mention celiac disease...no one had heard of a gluten free diet in 1974...no one ever seemed toknow anything for most of us older people. At 59, they still don't really know what's going on with me, and I keep reading, and trying to see what new thing fits my list of symptoms, and try something new.
For me, going gluten free...this is the next thing to try...and having lived without gluten before, it's no hardship in comparison to pain and nausea.
What are your symptoms? What happens first, and what next? Is anything the same from day to day? Because it's not just what you eat...it's what you feel, and how that makes your body put out a ton of chemicals to mess with you further...being lonely, feeling depressed, feeling like your life is ruined, and hating it.
There is a lot to control in your life that has nothing to do with your kitchen. Even if you do gluten free perfectly, your mind is going to have just as much an effect on you as celiac disease, as are the people around you. Everything you lose is going to have a physical effect on you...and every patch of boredom, of anger, of grief will stir your body up...and make you feel worse.
You need to start listing everything...a journal, not of what you eat alone, although that helps, but how you felt, and what you thought, because in just a few more months, you might have enough information to see a pattern of something.
And at your age, a grief counselor might be important. You have lost everything that you know, and expected, and desired. The old you died, and the new you is a complete mystery except for the memories of being 'normal'. Fortunately, no one really is normal, so you don't have to worry about that, but how to do your new life takes a new set of rules, and they are not all in a diet book.
You will have to design a new life, and a new you around what is happening, and that's a bit overwhelming for any of us. I didn't know I had a life long condition, nor that there was help somewhere. No one has ever really known what I, or many others here, ever had wrong with us, until it was screamed into there faces with a ton of proof, and most of us had more of a handle on life than you have just now. You are really young, and young bodies heal. My niece, at 35, was symptom free from celiac disease in about a year.
I still continually try new ideas...something new pops up every few years, and sometimes it helps. Going gluten free will help me...I know that. But it won't give me back the 40 years of trying to find out what was wrong, or the time I spent grieving over it, hating myself, and hating my life.
You know what is wrong, and what to do. You just are not really aware yet that you are going to have to keep doing this year after year, until you get it right. You have to begin to control how you thing, and what you feel...there are techniques that you can learn...thought replacement, to calm your mind, and get a better attitude, and then a better life.
A grief counselor can help you deal with all the reality you got shoved into your face, and help you cope with how impossible it all seems. But it isn't impossible...just hard.
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I am a father of 3. My oldest eats from a feeding tube. In November 2013 my (then) 3 yr old began to vomit after every meal and went from horrible constipation to horrible diarrhea accompanied by diaper rash. Over the next month sge lost weight and was diagnosed with failure to thrive for the 3rd time in her short life. Diet was changed to triple the calories and more than quadruple the amount of food taken in during each feeding. She was on antibiotics in the hospital and initially showed weight gain. When discharged we weren't home for five minutes when the vomiting began. After almost every meal she puked every drop of formula up. We returned to the doctor who simply told us to feed her exactly as she said to feed her and she will gain weight showing no concerns for her vomiting. One month later she was diagnosed with failure to thrive again. The next day was the worst day of my life... my local sheriff's office showed up at my door and took my two youngest children from me physically removing my 16 day old son from my arms. Our doctor that we trusted and went to with our concerns expecting sound advice had gone to the authorities claiming we were starving our oldest daughter. Having never listened to our concerns when we tried to tell her that her body was starving her and going to kill her if she didn't change something. We have been locked in a battle to get our babies back since january 27th (the oldest was taken from the hospital by dfcs) we can only afford public defenders (who seem to not want to get anything done) we need help. It occured to us this week that celiac runs in my wife's family. After many tests and her removal from us the problem still persists. She will be tested for celiac this coming week. Her foster parents are baffled as to why with the problems still occurring we still dont have our children and so are we any suggestions?
Have the Foster Parents put your children on a gluten free diet?
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The OP has not been on the Forum since October of 2013. Always a good idea to check dates of threads.
Colleen
Perhaps, but old threads have comments that are still very valuable to a newbie like me.
I haven't yet been tested, but I have nearly every symptom of Celiac, just in a slightly milder overall way, and my niece was diagnosed as having Celiac Disease last year.
I stumbled over this site in my usual quest to find out what else I can be doing to live healthier. I started drinking a gallon of green juice per day 3 1/2 years ago, and I have improved a lot, but it's all still there...just less so.
I have had the following problems:
Allergic to Everything & First Asthma Attack 1962
Lactose intolerance since 1964
Anxiety, Depression and Migraines since 1964
Thyroid deficiency since 1971
IBS since 1974 - Inability to keep food down, vomiting continuously until medicated. Stopped eating anything but hot oatmeal with water only, and Potatoes with the odd slice of American Cheese for flavor. Slowly added back very plain, low fat meat after 2 years, then after another 2 years, started adding in this and that. It got to the point where I could take a few bites of something and it would taste fine, and the next bite would cause nausea.
Diarrhea/Constipation problems since 1974
Pre-Diabetic 1988 Began to put on weight that would not come off on a normal diet. Preferred having weight to starvation and deprivation again, but limted weight to about 25lb's over ideal weight.
Auto Accident 1995 w/broken Neck, PTSD, and Trauma triggered Fibromyalgia - 60% physically disabled, causing increase of all symptoms, and a lot of pain. Added another 50 lbs due to comfort foods and no activity over 19 years.
Diagnosed Diabetes type 2 in 2011
As best I can see is that I have a flaw in my ability to process stress, which then caused other things to go wrong as life simply occurred. Add a lot of bad habits, and I am a mess.
My niece had similar anxiety, depression, and fibromyalgia, and intense inability to keep food down before being diagnosed at 35. Increasing pain got her to the Mayo Clinic.
I am waiting a reply from her as to DNA testing and biopsy information.
I started juicing heavily 3 1/2 years ago, and have gotten a lot better, but I seem to be stuck now, with my body making no progress. Achieving the age of 59 doesn't help, but I believe that stress and inappropriate nutrition is the key to most of our diseases these days, and that I can improve if I change what I eat.
I don't know that I have sufficient cause to be diagnosed with Celiac, except that I have had an increasing number of symptoms added one by one. The picture has been clouded for years by no one seeing the overall picture.
I am disgusted with the idea of yet another problem to visit doctors over...seeing a doctor 4 times a year is bad enough for the Pain Meds, IBS Meds and Diabetes Checks, which is controlled by diet, and not insulin.
Everyone will say, just get tested...but I really would like to avoid that if possible...it's a long way to the doctor (45 miles) and I avoid driving still except for a monthly food run, and then am exhausted, and I live alone...not really anyone to depend on to help me through this. My friends will help in an emergency, but they have enough problems of their own without mine being added.
All my family live in another State.
I am already on Medicare due to being disabled the last 19 years...so, what do you all think? I don't need the diagnosis to complete my medical coverage, just ideas on how to cope.
I have already started throwing out everything with wheat in it...fortunately I still like oatmeal and potatoes!
It Was Supposed To Be Over At Gluten Free! Help :(
in Post Diagnosis, Recovery & Treatment of Celiac Disease
Posted
AnnaChristine, the 3 weeks, 6 weeks references that are being confused with your original posts are from other people on the thread trying to tell you how long just a single dose of gluten can set you back, and that is if you are stable.
You aren't stable...you don't even know which foods you are reacting to, or how bad your system has gotten screwed up. Taking lots of supplements is hard on the Upper GI, and the damaged Upper GI will absorb only a little of them. The Naturalists and Nutritionists would tell you to take some of the basic minerals and vitamins you are missing, and keep raising the dose until you absorb something from them. Your Upper GI isn't absorbing much from what you eat.
As to your foods, Paleo is wonderful, but your body is screaming there is something not being fixed just by going off of gluten, dairy, and everything that is any fun to eat.
Your body is telling you that what you are eating is not working, and that your supplements are not doing the job either. You must simplify what you are eating and absorbing, so you body can rest and heal. Yes, you need to stay off gluten, and dairy, and anything not produced by a plant or the animals that eat the plants for the time being. But you are not listening to your body. It doesn't like something that you are doing, and there is a lot of things besides gluten that can irritate your insides.
What are your main symptoms...the top three symptoms that are making you miserable? Is it Diarrhea and Bloating...Constipation and Bloating...Stomach cramps? What is it that you can isolate as a problem? What foods can you get down, that will stay down, and not give your symptoms? If you are eating a wide variety of food, you cannot tell what is triggering your symptoms except the knowledge that gluten is a big cause. Fine, you are off gluten...you don't eat processed food...you have a seperate kitchen, so there is no cross contamination.
So something you are eating is hurting you on top of your Celiac. Or something you are not eating is a problem. But until you narrow down your food list, and eat the exact same foods every day for a while, you cannot figure it out.
It would also help if you ate a single food at a time, and waited for a reaction before eating something else a couple of hours later. We react to food quickly because we have messed up digestion, but you cannot locate a pattern if you keep changing what you are putting inside your body every few weeks.
You keep adding things by supplements, and you don't know if there is something in there irritating you either.
Please, go back to the beginning. Choose a handful of things to eat for several weeks, or even months, and don't change them. Take your vitimins and minerals. Avoid gluten of course, and anything you think will be bad for you, but stop throwing everything at your body at once, trying to get it fixed. Simplify what you eat, eat it over and over, and listen to your body.
We all want to pick you up, and get you fixed, but we can't. Only you can fix you...we can tell you what to watch out for, or what we did, but you are the scientist AND the guinea pig. You have to get logical and practical about this, and stop trying to magically fix yourself with a potion! You body needs time to heal...and you need to take the time to study yourself.
It will get better, you will get well, and you will have done it. I will help you. Everyone here will help you. But you have to do it, and now that you know what you have been doing isn't helping you heal properly, you have to find out what else is the problem!
Start over, keep it simple, and repeat until you figure out which of the foods you are eating is hurting you.
And many hugs being sent to you.XXXXX