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Celiac.com 10/09/2013 - This article originally appeared in the Spring 2013 issue of Journal of Gluten Sensitivity. Ron: Where do celiac disease and non celiac gluten sensitivity come from? Dr. Fine: We're talking about the dietary staple of Western Civilization, right? This is not the staple of the Asian diet or the African diet or the diet for the Americas. Not even all European populations have been eating it as long as those earliest farmers in the Middle East. We have altered the wheat so much, through hybridization and seed selection, to have more gluten and to be more favorable for farming practices, that we have to look at what gluten is ...... a highly antigenic food. It always has been. The coeliac affection was first described in 100 AD. So if we've been eating wheat, or grains, for 10, 000 years, then 8,000 years into this, gluten induced disease was written about, it was probably present long before that. The bottom line is that this is a 10,000 year old food with a 2000 year old description, so this is not a new syndrome. What could be new is that because we have hospitals and tests the resulting diseases can now be identified earlier. Before you had to be near death before anyone knew there was anything wrong with you. But we are certainly able to identify celiac disease before you are dying from it. I really think we are seeing more of an epidemic of non-celiac GS because, I believe, our immune systems are much more reactive than ever before. All autoimmune and immune diseases are on the rise. That's a fact from the NIH. The NIH has even acknowledged that there is probably an environmental component to that increase, and I agree with them. The wheat we grow now is more immune stimulating. The way I see wheat today is that it has become the poison ivy of the western diet. Poison Ivy is a plant that is highly immune stimulating but not everyone reacts to it. Not everyone gets a rash. Even if some do not react, for instance, if they rub poison ivy on their skin, you could probably biopsy the skin and see that it was stimulating an immune reaction but there may never be a rash and the person may never itch. That would be an asymptomatic immune reaction. Then, there are symptomatic people. And then, there are people who truly don't react. It is similar with eating grains. This is the food that brought us to where we are and without grains we couldn't have gotten civilization, we couldn't store food, and we couldn't have gotten all the other things that helped us become civilized. But it went awry. If you look at the Old Testament (The Torah), it says we should never mix two seeds of grain in the same field. I look at this as a warning to keep the seeds away from each other so they don't hybridize. Because when they hybridize, they also change their genetics. Wheat does not stay the same. If you cross this wheat with that wheat, instead of being haploid it becomes tetraploid and hexaploid, so modern wheat is hexaploid. Ancient wheat was haploid, with two chromosomes. So now, we've got to look at this like a public food issue. If the same food that gave us civilization is now causing disease, it's either something we've done or something that's been there all along, plus something we've done to the wheat. And, our environment is stimulating our immune systems so much now that we are reacting more to wheat. In other words, to try to say something like we've got to do something to be able to eat wheat is almost like saying 'we've got to do something so when we walk through a patch of poison ivy, we won't react.' I just don't think it makes sense to say let's find a way to eat a substance that we know is causing mental and brain problems, obesity, immune problems, gut problems, etc. They're really just empty calories anyway. There's no vital nutrients in grains. I think it's valid to ask, why are we so addicted to, or in love with, grains? Why can't we just go on from here without them? Why can't we move forward instead of trying to do everything to figure out how to stay in this current food paradigm? Ron: Maybe that is part of why the gluten free diet has become so popular lately. Dr. Fine: An interesting phenomenon we have seen is that since gluten free food and the whole gluten sensitive thing has become popular talk show material, it has been a little bit de-medicalized. That can actually pose some problems because more people are seeing it as a diet like the fifteen other diets they heard about last week. Instead of "I've got a serious problem and I need an answer, and how do I find out what's wrong with me?" That used to be what it was. People have forgotten that this is a serious medical issue. This isn't just a diet de jour. It is a diet that should be followed consistently and strictly. So maybe we should be trying to communicate where we are in this revolution. The popularizing of the gluten free diet may be harmful to some people because they will think that they have tried the diet and gotten little benefit from it, when really, they have just dabbled in the diet and have not really given it a chance to help. They may never learn that gluten really is causing their health problems because they will think that they have tried it and it didn't work for them. And they are less likely to seek objective tests for gluten sensitivity and other possible causes of their problems. It has been a kind of a mixed blessing that the gluten free diet has become so popular. At least we don't have to fight to get the truth out, but what I don't like is the idea that what used to be a highly objective, credible, medical issue ie: celiac disease and non-celiac gluten sensitivity is kind of becoming like the Atkin's diet. You know, "I'm on it. I'm off it. I'm going to go on it next week. Oh, I'm going to a birthday party so I'm going to have some cake, etc." That approach, we all know, is the absolute wrong thing to do. And I think that the people who were almost crippled by gluten, and then got better, are probably upset when somebody looks at the gluten free diet like it's the diet of the week. Ron: I know that you operate a testing laboratory but you also organize academic conferences. Dr. Fine: Yes, I've got two organizations. One is a purely educational, non-profit public organization, called the Intestinal Health Institute. My lecturing, for about 12 years now, is aimed at trying to bring about greater awareness of the health problems caused by gluten and other foods, plus intestinal and overall health. Several years ago when talking about gluten sensitivity, it was almost like getting people to see that the emperor didn't have clothes on. That has improved lately, because public and medical beliefs are changing. As a gastroenterologist in the 1980s, I saw a similar revolution in thinking take place. Somebody came out and said "Ulcer disease is not purely from too much acid. It is a disease caused by this bacterium called Helicobacter pylori." That was unbelievable within the existing paradigm. It started out with people saying: "Did you read that paper? It is absurd!" Then more information came out. Then it became controversial. When an idea becomes controversial, it is threatening something. Someone on one side is trying to protect what is, and someone on the other side has a new idea that may displace the side being protected. What I saw was a process where that idea went from being laughable, to possible. Then, fifteen years later, it became the most popular topic in gastroenterology. It went from 1985 to 2000 when Helicobacter pylori had become "the" topic. And, by the way, research goes pop too. Once a topic begins to be accepted, researchers dive in. I saw that happen at the end of the 1990's too. People with microscopic colitis, which my mentor Dr. John Fordtran had originally discovered and defined, and I researched clinically, pathologically and histopathologically. I found it to be very similar, and epidemiologically, almost identical to celiac disease. But these patients didn't have celiac disease nor did they have the markers of gliadin reactivity in their serum. Then I had this idea one day that maybe the antibodies are inside the intestine because I had heard about a researcher, Anne Ferguson, who had done some very interesting work where they had either sampled the fluid inside the intestine or flushed all the intestinal fluid out and measured antibodies, even though they weren't present in the blood. To me that made perfect sense because that's where your food is and if your immune system is ever going to secrete antibodies, as a first line of defense, it had better get those antibodies inside the intestine because that's where the bacteria are going to be invading. You can't use serum antibody testing when we know that the intestine is, indeed, the site where the problem originates. Dr. Anne Ferguson is the one who found that you can find intra-intestinal antibodies when they weren't present in the blood, so blood is an indirect measure of the presence of celiac disease. Those antibodies mainly get in blood when you have intestinal damage but if you don't, they cannot leak into the blood, it seems. It's apples and oranges. A blood test and a stool test are not the same test. IgA is a secretory antibody. It is made to be secreted into the intestinal tract, the respiratory tract, and anywhere there is a mucosa that interfaces with the world or food or a foreign antigen. That's where you see seceretory IgA and that is what we looked for. When we had the idea and played it out - and let me just say now that other people who have tried to study this, who have usually been studying it with the hypothesis that it is no good, and of course, whatever your bias in research is, you are usually going to wind up finding evidence to support that bias. Nevertheless, when we first did it, we adapted a serum method for stools, and we didn't find it either. You have to go a few steps further. But if you give up on your first try, you always miss it, and so did I. And those with a bias against it will never look any further. Anyway, so we developed a method and it was much more sensitive than finding serum positivity for anti-gliadin antibodies. You've got anti-gliadin antibodies in illnesses other than celiac disease, like irritable bowel syndrome, autoimmune diseases like microscopic colitis, chronic fatigue, and so on. So we were looking at numbers like 60% and 75% positive Vs 11% in the blood. We also found fecal gliadin antibodies in 25% of people with no symptoms at all. Still, 75% is a lot higher than 25%. So I knew that I had discovered a new paradigm. And I saw (by the way, that 25%.... at first it was 29% but it eventually averaged out to 25%) a quarter of asymptomatic people reacted positive with stool antibodies. But if you take everybody, because so many people have other diseases, like 15% of the population have irritable bowel syndrome, and nearly 15% have autoimmune disease....... when you add it all up it could be about 50% of people who are reactive to gliadin, as determined by looking for antibodies inside their intestines. Ron: How did you get started on your own? Dr. Fine: I made the transition in 2000, so our anniversary is April 1st, 2000. This is our 13th year. If you've hung around 13 years, I think, that also makes a statement. EnteroLab.com was born because I knew that what I had discovered was, well, what we're really talking about is an epidemic. At that time, I didn't know anything about the "why" or even the "what". I just knew it was a massive problem I had discovered. Maybe I could call myself the Paul Revere of gluten sensitivity. I had to be the one to get on the horse and say "gluten sensitivity is coming". I converted my academic career, which was stellar at the time.... it was very traditional.... 40 publications by the time I was 35 and I worked with what would arguably be one of the most successful researchers in the world, Dr. John Fordtran. And I went out on a limb and put my entire professional reputation and career in jeopardy because I knew this had to be brought to the world. I knew there would be a controversy. The idea, which had been in the medical literature for years..... non-celiac gluten sensitivity can be traced back to at least 1980, so we were already 20 years into that. And I thought if I bring the idea directly to the public, then, because it's a dietary treatment, they can proceed in getting better while we wait 15 to 20 years for the doctors to catch on. What I didn't know at the time is that there's a whole subset of practitioners, like chiropractors, nutritionists, and nurse practitioners, who don't seem to feel so threatened by some major new idea. They caught on quickly. They're the early adopters. Ron: You have traveled a long way since 2000 Dr. Fine: Here's the way I'm looking at what's going on now versus where we started. My observation is that every new idea, every revolutionary finding, seems to happen in two places on opposite sides of the globe. Having happened in Christchurch, New Zealand and in Dallas, Texas would qualify for that. I think Dr. Rodney Ford and I got on the track at about the same time. What I had previously been finding and, I think, what he has found was that these positive anti-gliadin antibodies in the serum, which everyone was casting off as false positives, didn't make sense. How could a quality lab test have a 10% or 12% false positive rate? That's like saying that we can't diagnose anemia without including 10% or more people who don't have it. That would be a bad test. So it didn't seem true that if anti-gliadin antibodies were part of the reaction of celiac disease, why would 10% to 12% of the population have anti-gliadin antibodies in their blood? Well, that's because they are reacting to gliadin. It is the most immunogenic food. They don't have celiac disease, either because they don't have the genes to get it, or they haven't got it yet. Fecal gliadin antibodies were this kind of intermediate thing. Ron: Are you saying that the fecal antibody does not identify a leaky gut, whereas the serum antibody does? Dr. Fine: No, it might imply that, but I wouldn't say that it says that. In fact, in a study that I did, where I looked at serum antibodies, we did permeability studies and fecal fat measurements and biopsies, and some treatment. We found abnormal permeability, as measured by a surcrose permeability test, performed by the authority on that test at the time, Dr. Jon Meddings. He found about half of those with leaky gut had the serum antibodies, not all. Ron: Is there more mainstream research that supports your findings? Dr. Fine: Well, I found a rate of about 11% serum IgG or IgA among people at a shopping center in Dallas. Dr. Marios Hadjivassiliou found IgG antibodies in about 12% of the population, and Dr. Rodney Ford tells me that he has found a rate of about 10% who are gluten sensitive. These are all congruent findings. Fecal Antibodies at 25% of asymptomatic and 60 to 75% of symptomatic people, depending on what disease or symptom you're talking about and then, because those problems are so common, the overall average, from my calculations is 50% overall...... mostly adults. Theoretically, it might be less frequent in children, but I don't have enough children's data to know. Ron: Is your testing similar to Dr. Marsh's rectal challenge testing for celiac disease? Dr. Fine: Yes. I identify one of his references in my manuscript where even siblings without DQ2 or DQ8 can be positive for a rectal challenge, even though they don't have celiac genes or get celiac disease. That's another proof that you don't have to be celiac to be gluten reactive. He did studies on that, a sibling study which was really interesting. What is your vision for future testing & treatment of celiac disease and non celiac gluten sensitivity? Dr. Fine: My lab and myself are just about finding the facts and then helping people to understand those facts. Frankly, to use a metaphor, your vision is only as good as your eyes and your glasses. If your eyes aren't good, good glasses can make your vision perfect. But if you are using the wrong glasses, ie: the wrong test, or the wrong paradigm, then you might be seeing farther than you used to see, but you are not really seeing the truth yet. Ron: Would you care to comment on the whole oats controversy? Dr. Fine: I've got a feel on oats that is a departure from the general view. We have a new test for oat protein sensitivity and it is really showing to be very helpful. We launched a more extensive food sensitivity test panel, 2 years ago, and oats is one of the antigens we included, along with rice and corn and a few meats and nuts and potatoes. What we are seeing sometimes, is people who don't have a reaction to any foods and their oats are through the roof and they are gluten sensitive. I don't know why. Just like it was all or none with celiac.... you could have something in the middle, right? Oats is the same way. It's not all or nothing. Some people are sensitive, and some people are not. We know it's the least stimulating of the four grains. That makes sense because of the biochemistry of the prolamine and glutamine residues, and a lot of antigenic glutens. However, logically, you cannot do a study of tolerating oats in anyone who doesn't tolerate oats. So anyone doing a study where the subject has to consume oats for long periods of time, that could never include someone who is sensitive to oats. The truth about studies that make this claim is that there is a very large withdrawal rate and a large component that can't qualify for the study because it made them vomit or sick in other ways. So the only thing you can conclude is that among the people who can symptomatically tolerate oats, over long periods of time, oats don't seem to cause the villous atrophy of celiac disease, which isn't the best measure anyway, to my thinking. But that does not mean that anybody with celiac disease can tolerate oats and that seems to be the message that has come down to us. We're talking about wheat, barley, and rye, and, we used to think, oats. Now we are saying oats are okay and that is just plain wrong. In fact my own gluten sensitivity became known after increasing my consumption of oats. And if you ever go into a room of gluten sensitive people and give a talk, just ask them "How many people here know that they can't eat oats?" They either get pain, gas, vomiting, or whatever. It's about 20% to 30% who will always raise their hands. To use an analogy, if people had a fear of round light fixtures, and there happened to be big, large round light fixture on the ceiling, how many people could I expect in this room right now to not be afraid of big round light fixtures? None! Those who are afraid of round light fixtures wouldn't come in the room. So nobody who can't eat oats or is afraid to eat oats is going to volunteer or succeed at staying in a study where they have to eat oats for 2 to 5 years. The only people who are going to stay in that study are the ones who want to find out they can eat oats. The researchers certainly have some reason to want to find out they can eat them. So that bias is automatically built into those studies, so the fact is that it has not been proven and people are being misled and frankly, in my opinion, everybody should wait until they get over their symptoms and then maybe do our test or try re-introducing oats. A person who doesn't eat gluten-free cannot know what an insider knows. And, they have a different agenda. They're clearly exclusively a professional. It's kind of like somebody making policy on health food who eats a horribly unhealthy diet. So I see these jaws drop in my lectures when people find out that you can't just automatically assume that you can tolerate oats. You might be able to, but you might not, and there's no way someone can Ron: Will your oats test work after years on a gluten-free diet? Dr. Fine: I don't know. That's a good question. The good thing about the stool test is that the antibodies last a lot longer. You can be gluten-free for one or two years and still we can find antibodies to the wheat gliadin in the stool. I guess that it would be the same for oats. I definitely abhor the idea of a gluten challenge for celiac disease.... especially the biopsy. I mean, the biopsy may not become abnormal for 5 years and they could still be sick. Ron: You mentioned that you follow a gluten-free diet. Can you tell me why? Dr. Fine: I've had spondyloarthropathy since I was about 14. I manage it without drugs and I have no pain. I control it just with diet. Ron: Does your lab do genetic testing? Dr. Fine: Yes, and the gene test that EnteroLab.com offers actually types the gene at the HLA locus, which means our reports indicate "this is the gene you have at the HLA-DQB1 locus".; we don't just say "yes you have the celiac gene", or "no you don't". There is data in the literature, including research I have published that identifies HLA-DQB1*0301, 0303, which are the DQ7 and DQ9 genes, respectively, and DQ1, and we know from Dr. Hadjivassiliou's research that DQ1 (including 05xx and 06xx subtypes) reacts with gluten and represent gluten sensitive genes. Of course, DQ2 and DQ8 are the main celiac HLA-DQB1 genes. The interesting thing is that, in America, it's very rare not to have one of these. Almost everybody does, actually. It just comes down to how many do you have? Which one/ones do you have? Do you have one that seems to be a more reactive one or a less reactive one? And, do you have a celiac gene or two celiac genes? Which is going to mean, if you have two celiac genes or two gluten-sensitive genes, or a celiac gene and a gluten-sensitive gene that every child you have will have at least one of them. So, we prefer our gene test over that of others that merely answers the question “ Do I or do I not have a celiac gene.” Not only is it inexpensive, at about half the price of the other lab that does it, we give you more data. I was doing genetic studies in the 90s, to figure all this information out. For instance, I met Dr. Hadjivassiliou at the International Conference on Celiac Disease at the University of Maryland in August of 2000. Dr. Fasano hosted it. I spoke before Dr. Hadjivassiliou and I showed this association with DQ1,7, or I called it 1,3 with 7 being a subtype primarily but also 9, and so he came to me and said "Well, I've seen associations with my neurologic disease with DQ1, so I'm glad someone else is finding this." So, again, it's not just the antibodies, and it's not just non-celiac gluten sensitive genes, and as far as I know, no other lab is dealing with that except us. The abnormal permeability, in my opinion, is an effect of the immune arrays going on and the primary reaction is the immune response to gluten. You could possibly say that you get altered permeability first and then you get the gluten reaction, but I don't think so. I used to study permeability in humans in vivo. You can look at my CV or go to PubMed.com and put Fine KD and you'll see some early studies about permeability where we used to measure permeability in live human subjects and it was just a given, to me, that abnormal permeability in inflammatory disorders is primarily due to the inflammation and the disruption of tissue, architecture, and the like. I think that the permeability follows the inflammation. Ron: I have dermatitis herpetiformis (DH) and I find that my skin reacts more to oats than other grains. If I eat something that is labeled “gluten-free” but contains oats, I soon find that my DH flares up. I know others with celiac disease and DH who say the same thing. I mention this oats connection in the hope that you might someday do some research to explore that connection. Dr. Fine: We are just about to launch our oat sensitivity fecal IgA test as part of a gluten sensitivity panel because it is playing a little bit different role than testing for other non-gluten foods. It's like when a sophomore seems to be stellar on a football team, they pull him up to the varsity team. So we're pulling the oat test out of the sophomore squad and putting it on the varsity because it was showing up a lot more often and I think it's in the same paradigm as the wheat gliadin separate from other foods. Even though we like to look at it as "other grains". We are seeing a lot of rice sensitivity, some corn sensitivity. Many seem to react to other grains, as I do personally. The news is that we'd like to use April 1st, 2013 as the launch date for our new gluten sensitivity panel because it is an anniversary date for us. We hope to have that new panel available about April 1st, along with a tTG test, and an anti- gliadin fecal IgA test, and maybe even another test for another dietary food antigen, which is an ASCA (anti-Saccharomyces cerevisiae antibodies). It's been associated with Crohn's disease. It's like the diagnostic screening blood test for Crohn's, but more sensitive. We and some other people have looked at it in the stool, so that's just another test that we might put in the panel to make it affordable to get all 4. Ron: Thank you for taking the time to provide our readers with such a comprehensive discussion of your work and the exciting new tests that will soon be available at your lab. Dr. Fine: You are very welcome. It was nice chatting with you. And thank you for the pioneering work that you have done as well!
In 2010, the U.S. market for gluten-free products was valued at $2.6 billion. Projected sales in this market are expected to exceed $5 billion by 2015.(1) As the gluten-free product market expands, and as we continue to seek out new tools to aid us in our search for truly gluten-free products, we are in for a treat with the recent launch of Gluten Free Watchdog. Tricia Thompson, the founder of Gluten Free Watchdog, agreed to discuss it with us. Can you explain what Gluten Free Watchdog is, and what is novel about it? Gluten Free Watchdog (www.glutenfreewatchdog.org) is a food testing site that was started to make expensive state-of-the-art gluten testing available to the gluten-free community at a fraction of the true cost. This is the first time this type of resource has been offered. Can you share your personal story – how you became interested in celiac disease and gluten sensitivity? I have been gluten free for over 27 years. In the early years, I became very frustrated by the contradictory information available on several key gluten-free issues—Are oats safe to eat? Why is wheat starch eaten by the gluten-free community in Europe? Why do some support groups say “grains” such as buckwheat, amaranth, and quinoa should be avoided? And then there was the issue of nutritional quality. Back then almost all gluten-free processed foods were made using refined rice/corn and starch. So after finishing graduate school I made a list of all the topics I wanted to research and then started writing (and writing and writing!). In December 2008, the Chicago Tribune investigated three Wellshire Kids brand gluten-free products, sold exclusively at Whole Foods Market — Dinosaur Shapes Chicken Bites, Chicken Corn Dogs, and Beef Corn Dogs — and analytical results indicated that they contained gluten, ranging from 116 to 2,200 parts per million. More recently, Paul Seeling, a North Carolina baker, was convicted of fraud relating to the packaging of wheat bread as a gluten-free product. Have events like these influenced the Gluten Free Watchdog? Events such as what occurred with Wellshire Farms made me realize that some manufacturers, while well-intentioned, did not understand how consumers in the US define gluten free when they see it on a food label. It also made me realize that some manufacturers did not know how to accurately test their labeled gluten free products for gluten, and that some of them were operating under the mistaken belief that if a product is (or is made from) a naturally gluten-free grain the product does not need to be tested. We have learned a lot over the years about cross contamination, starting with the study published in the New England Journal of Medicine on gluten contamination of oats and more recently with the study on gluten contamination of naturally gluten-free grains and flours published in the Journal of the American Dietetic Association. Combined, these events and studies may have undermined consumer confidence in labeled gluten-free foods. Most manufacturers are doing things right. It is my hope that Gluten Free Watchdog will allow consumers to have confidence in the products they eat and feed their family. Over the last ten years, you have published a significant amount of research on gluten-free product labeling. And you recently authored a chapter on gluten-free product labeling in Melinda Dennis’ and Daniel Leffler’s new book, Real Life with Celiac Disease: Troubleshooting and Thriving Gluten Free, which was published by the American Gastroenterological Association. How has your research influenced Gluten Free Watchdog? From the consumer perspective the most important thing to understand about allergen labeling is that it pertains to ingredients only—it does not pertain to allergens that may be in a product due to cross contact. Currently, Gluten Free Watchdog is only testing foods labeled gluten free. In the future, we may test foods that appear to be gluten free based on ingredients. The Food Allergy Labeling and Consumer Protect Act (FALCPA) does not currently require the disclosure of barley or rye; or, contamination by manufacturers on product labeling. Can Gluten Free Watchdog help us to decipher product labeling that may be difficult to understand? Gluten Free Watchdog is primarily a food testing site. My other website www.glutenfreedietitian.com contains extensive information on labeling laws and ingredients. Under FALCPA, the Federal Food & Drug Administration (FDA) is considering a proposed government definition of the term “gluten-free” for food product labeling purposes. Once FDA approves a final rule, will the role of Gluten Free Watchdog change? Possibly but it will remain primarily a food testing site. Consumers will still want to know the level of gluten at which foods are testing and will still want the added confidence that independent transparent third party testing provides. On your blog, Gluten Free Dietitian, you discuss R5 ELISA tests, Ridascreen 7001 and Ridascreen R7011. What is the importance of these tests, and are these the tests that Gluten Free Watchdog is using? Are home-test kits accurate? The standard sandwich R5 ELISA is one of only two commercially available ELISAs validated at the levels used for regulatory purposes and official governmental methods (the other is the Morinaga Wheat Protein ELISA). The R5 and Morinaga ELISAs also are included in the FDA’s proposed gluten-free labeling rule as possible methods for rule enforcement. The competitive R5 ELISA may be used in conjunction with the sandwich R5 ELISA when a food is highly hydrolyzed. Gluten Free Watchdog tests food using the standard sandwich R5 ELISA and will, if necessary, also use the competitive R5 ELISA. What products does Gluten Free Watchdog plan to test in the upcoming months? Are there any products that are difficult to test; and if so, why? We have been and will continue to test a wide variety of products—grains, flours, breads, cereals, pastas, cookies, etc. Anyone can visit the site and browse through the products that have been tested to date. However, testing data is available only to subscribers. One of the nice features of Gluten Free Watchdog is that subscribers can request that certain products be tested. One of the keys to successful testing of products is getting a homogenized sample—meaning any contaminant is evenly distributed throughout the sample being tested and there are no “hot spots.” This is why we test two extractions of each “homogenized” sample at Gluten Free Watchdog—we want to make sure the sample is truly homogenized. It can sometimes be tricky to get a homogenized sample when testing raw grains in grain versus flour form. FALCPA does not cover foods regulated by the United States Department of Agriculture (USDA), and the Alcohol and Tobacco Tax and Trade Bureau (TTB) has yet to finalize an allergen labeling rule for distilled spirits, beer, and wine. Under TTB’s current labeling provisions, the term “gluten-free” is considered a health claim and its use is prohibited. Are USDA and TTB adequately protecting consumers? If not, does Gluten Free Watchdog plan to test any products regulated by either? Neither the TTB nor the USDA have mandatory allergen labeling and it will be interesting to see how they proceed with gluten-free labeling once the FDA’s gluten-free labeling law is in place. I have been told by representatives of the USDA that they will adopt the FDA’s gluten-free labeling law rather than develop their own. Gluten Free Watchdog will test USDA-regulated foods that are labeled gluten free. As mentioned earlier, we may start testing foods that appear to be gluten free based on ingredients. When we do, we would be happy to test beverages regulated by the TTB. Is Gluten Free Watchdog affiliated with any companies that sell or market gluten-free products? Nope! That is why we really need the support of gluten-free consumers!! It is my hope that members of the gluten-free community will see the value in having this type of resource available and will be willing to contribute a relatively small amount in exchange for access to expensive testing and input on what is tested—similar to a co-op. Source: Gluten-Free Foods and Beverages in the U.S., 3rd Edition. Packaged Facts, February 2011.
Celiac.com 07/05/2011 - A recent segment of the PBS series, Autism Now, features an extended interview with Dr. Timothy Buie, who makes some interesting points regarding connections between autism, diet, and gastrointestinal issues. Regarding celiac disease, Dr. Buie points out that, as diagnostic methods have improved diagnosis with antibody and genetic testing, researchers have found a much higher frequency of celiac disease than the previously indicated. For his part, Dr. Buie has come to regard autism as a 'whole-body' experience, "a condition that, in some children, affects their allergic responses and their immune system and a whole host of other systems." Dr. Buie points out that autism has been characterized as a medical condition only since 1943, and was considered to be a childhood psychosis into the 1980's. Only recently have doctors considered nutritional and other issues to be an important part of autism. Many autistic children simply do not get adequate nutrients. Because most autistic children are highly selective in the foods that they will eat, autism can present nutritional challenges. Dr. Buie mentions the case of a child who had no source of vitamin C, except for drinking Hi-C., and who developed scurvy when he stopped drinking Hi-C. However, beyond nutritional challenges, autistic children face higher rates of gastrointestinal problems. Dr. Buie also points to studies that put the prevalence of gastrointestinal problems in children with autism at between 50 and 70 percent. Still, separating autism-associated problems from common childhood problems can be challenging. For example, 20 percent of children suffer constipation at some point in their pediatric years. Another quarter suffer from acid reflux that needs to be treated for a period of time. So, telling the difference, or determining if a symptom is unusual or problematic can present its own challenges. Science is just beginning to make progress in charting other conditions that may be associated with autism. For example, about one in 5,000 people suffer from mitochondrial disease in the general population, while up to 1 or 2 percent of children with autism have mitochondrial dysfunction. Dr. Buie says he believes that data is just preliminary, and that subsequent studies will likely show a higher frequency of mitochondrial dysfunction in those children. In the article, interviewer Robert MacNeil asks Dr. Buie a series of questions regarding one of the doctor's patients named Nick, an autistic child who faced numerous gastrointestinal issues. Among them, Nick was having chronic diarrhea. Dr. Buie points out that Nick has several gastrointestinal problems, and "has, clearly, food sensitivities." Even before he saw Dr. Buie, Nick had tried reducing milk and gluten from his diet, and he had seen improvement on that diet. Nick's endoscopy was largely normal, and because he didn’t have significant inflammation, Dr. Buie was able to exclude allergic change along the lining of the gut. However, Nick had changes in the lower GI tract that looked like prominent lymphoid reactions -- this finding of lymphoid-nodular hyperplasia that’s common in people with autism. When MacNeil asks if Dr. Buie thinks that the definition of autism should be broadened, or the description of it, the doctor cites noise sensitivity as one component that should be added to the autism definition. Dr. Buie adds that other medical conditions that are often seen, like seizure disorders or gastrointestinal disorders, should be considered as part of the clinical picture of autism because they’re common enough that "they will be – as we get smarter about taking care of these kids – part of how we describe this condition." Read the entire interview and follow the entire Autism Now series on PBS.
Nutritionist Melissa Diane Smith, author of Going Against the Grain, has written a new book, Gluten Free Throughout the Year: A Two-Year, Month-to-Month Guide for Healthy Eating. I’m happy that today we at Celiac.com have the exclusive first interview with Melissa about her book. Scott: Hi Melissa, thank you for stopping by to answer my questions about your new book. I think this is a book that will interest many Celiac.com readers and we’re delighted to have you here. Melissa: I am delighted to be here. I really admire the work you do on this site and I’m thrilled to have Celiac.com be the first place to begin spreading the word about my new book. Q: Let’s start with this question: What was your primary goal in writing Gluten Free Throughout the Year? A: My primary goal was to help people learn how to eat gluten free and healthy so that they can experience improved health and protect themselves against disease. If you stop and think about it, improving and protecting our health is the reason all of us began eating gluten free in the first place. We all know that it’s quite a challenge to go from the diet that most of us were used to eating, to avoiding all sources of gluten in our diet. Because of that, many of us focus on gluten free and nothing else, either not knowing or just plain ignoring basic rules of nutrition that could keep us healthy. By doing that, we often end up getting brand new health problems, including unintended weight gain or blood-sugar- or insulin-related health problems such as diabetes or prediabetes. Many people think “Eating gluten free is so hard, I can’t make any more improvements to my diet.” But in my book, I wanted to show people that it’s not as difficult as they think. You can live the gluten-free lifestyle you’re currently living and gradually learn how to make better food choices that are very tasty and that keep you healthier over the long term. Q: You have organized the information in your book in an interesting way. Can you tell our readers about the format in the book and how that came to be? A: The chapters in the book are organized in a month-to-month format and cover seasonal topics or common issues that gluten-free eaters run into. The chapters are short, easy to read, and packed with practical tips. With this format, people who don’t have much time can quickly grasp the main concepts that are covered and how to apply them in their gluten-free life. That format came to me in large part because after the publication of my Going Against the Grain book in 2002, I held in-person Going Against the Grain Group monthly support meetings for six and a half years. From those meetings, I came to understand the issues and seasonal topics most people had questions about and wanted the most help with at various times of year. I also came to understand that people couldn’t learn everything about nutrition all at once. People need time to learn how to eat gluten free and to improve their diet in other ways. They need time to learn helpful nutrition information, to have it soak into their minds, to learn how to choose tasty but higher-quality gluten-free foods, and how to combine gluten-free foods in simple yet delicious ways. Because we’re all busy, most of us learn in bits and pieces, and what we learn first is usually based on what is most timely, applicable or helpful to us right now. So, the book is organized as a handbook to help you eat better no matter what time of year it is. You can flip to the March chapter (“Spring-Clean Your Diet”), to July (“Eating Out in Restaurants”), to September (“Gluten-Free School Days!”), to December (“How to Have a Healthier Holiday Season”), depending on the information you need at the time. Q: In your book you indicated that consumers seem to know how to manage their symptoms of gluten sensitivity, regardless of the fact that most doctors are still clueless. Why do you think doctors are so behind times with this vastly growing epidemic? A: Many doctors are so busy in their everyday practices that they simply don’t have time to stay up to date on the latest research. Most doctors who now practice medicine were taught in medical school that the only gluten-related disease was celiac disease and that it was very rare and only showed itself with severe gastrointestinal symptoms, such as diarrhea, malabsorption and weight loss. That’s what doctors look for, if they’re looking for gluten-related illness at all. We now know that all of that “information” is out of date. We also know that gluten sensitivity is a bona fide medical condition that affects far more people than celiac disease and provokes an astounding array of symptoms, but most people with non-celiac gluten sensitivity simply aren’t diagnosed with it and needlessly suffer from unwanted, uncomfortable symptoms. Without adequate help from doctors who understand gluten sensitivity, more and more people who were told they didn’t have celiac disease started taking matters into their own hands and began taking gluten out of their diets to relieve and eradicate their symptoms. Going gluten free helped many people when modern medicine didn’t and couldn’t. When people go a bit further and eat gluten free and healthy, they can take their health to a whole new level. Q: In your book you suggest that a gluten free diet can be harmful if done incorrectly. What do you mean by this? A: Far too many people who avoid gluten for their health eat foods that are made with disease-causing processed ingredients, including refined flours (such as white rice flour), refined sugars (such as sugar or evaporated cane juice), and refined fats (such as soybean oil, corn oil, and partially hydrogenated oil). Refined flours, sugars and fats don’t cause illness in the same way that gluten does, but they interfere with healthy blood sugar metabolism and fatty acid metabolism and set the stage for degenerative diseases to develop and worsen over time. Overall, many people who eat gluten free are so focused on avoiding gluten that they often don’t concentrate on selecting healthy sources of carbohydrates, fat, and protein, and foods rich in vitamins and minerals. That takes its toll on health in the long term in a different way than what gluten was doing to them. Earlier this spring many people saw Jamie Oliver’s Food Revolution TV show, which focused on teaching people that they need to avoid junky processed foods and eat more fresh foods, especially more vegetables, to lose weight and improve their health. Well, we need a food revolution in the gluten-free community. We need to realize that we are not immune to the negative health effects of junky processed foods, even if those foods are gluten free, and we need to bring more fresh, nutritious, whole foods into our diets. That’s what my book is all about. Q: What do you think is the biggest mistake people make when initiating a gluten-free diet? A: The biggest mistake by far is trying to eat what most people in the United States eat but just make it gluten free. The United States is the fattest nation on Earth. We shouldn’t want to emulate the Standard American Diet, appropriately abbreviated SAD, with all its pizza, pasta, bread, baked goods, desserts and snack foods. It’s not a healthy diet. It spikes blood sugar levels, which spikes insulin levels, which sets off a cascade of events to occur in the body that promote unhealthy weight gain and numerous heart disease risk factors to develop. You can switch to pizza, pasta, bread, baked goods, desserts and snack foods that are all gluten free. By doing that, your immune system won’t be reacting to gluten. But, unfortunately, gluten-free versions of those foods still are high in blood-sugar-spiking carbohydrates, wreak havoc on blood sugar and hormonal systems in the body, and set off that same cascade of events to occur that lead in time to insulin-related conditions, including weight gain, type 2 diabetes, heart-disease risk factors, and more. It’s great that we have so many gluten-free food options available today, and we can have substitutes for wheat-based foods occasionally. But all of us really need to cut down on grain products and sweets, select those that we eat more carefully, and eat more lower-carbohydrate, nutrient-rich, fresh vegetables and fruits. That is the answer to long-term weight control and good health that many people, including those who eat gluten free, miss. Q: What are some of the main issues and topics you cover in your book? A: Everything from gluten-free traveling and gluten-free parties, to the difference between lactose intolerance and a milk allergy, to the little-known troubles that people have with corn. I of course also cover the various seasons, such as in the chapters, Enjoying the Juicy Fruits of Summer and Celebrating Autumn’s Bounty. And I have a recipe or two at the end of every chapter. Q: Could you give us a little taste of some of the practical information you offer in your book? For example, we're getting to that time of year when people have outdoor picnics but some of us who eat gluten free get stuck as to what we can take on picnics. Can you name a few suggestions from your book? A: Sure. For a quick brown-bag type picnic, you can make sandwiches with meat leftovers or gluten-free deli meat on gluten-free bread, organic corn tortillas, or a lower-carbohydrate, grain-free tortilla substitute that is just now coming to market. Throw in some veggie sticks and fruit for a quick, well-balanced meal. Picnics also are a great time to use salads as main dishes, side dishes or desserts. You can make a main-dish salad with greens, assorted vegetables, nuts or seeds, and chilled cooked steak, chicken or fish. You can fix a nutrient-rich side dish using quinoa in place of couscous to make tabouli or iodine-rich Sea Tangle Kelp Noodles in place of rice pasta to make pasta salad. Or make the recipe in the book for Greek Potato Salad made with olive oil and lemon juice instead of soybean oil-based mayonnaise. For dessert, you can prepare a colorful assorted fruit salad such as blueberries, raspberries and sliced strawberries. Finally, you don’t have to take a big assortment of pre-made food. Sometimes the best picnics of all are spreads of finger food to nibble on, such as slices of cold pot roast or roast chicken or meat kabob pieces, garlic-stuffed olives, guacamole or salsa with organic blue corn chips or Mexican-style flax crackers, assorted nuts, and red or green grapes. These foods are fun to grab as needed in between good conversation or throwing a Frisbee or football back and forth. Q: Would you say the recipes in your book are different in any way from recipes in other books? And could you name a few of your recipes? A: My recipes are as no-fuss as possible and they’re also as nutritious as possible. Contrary to what many people think, eating food that is good for you does not need to involve a lot of work or deprivation. In fact, when you do it right, simply prepared food actually has a gourmet taste. My grandfather was a Greek chef and I love good, tasty food. A few of the recipes in the book are Dairy-Free Brown Rice Pudding, Almond Pancakes, Chestnut Stuffing, Pink Rice Pilaf with Roasted Asparagus and Mushrooms, and Chicken and Strawberry Salad with Cilantro-Lime Dressing. I even have the recipe for Quinoa Pancakes with Peanut Sauce that Dr. Rodney Ford, his wife Chris, and I shared at a local restaurant when they visited my hometown last year. In my recipes, common food allergens are avoided as much as possible, and the book mentions convenient, healthy, gluten-free food products to try by name. Scott: Your book is really unique, and informative. I loved the recipes and can't wait to try them! Thank you for stopping by and answering my questions, Melissa. Melissa: It was my pleasure. Thank you for having me.