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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    THE DAILY SHOW'S JON STEWART NAILS CELIAC DISEASE!


    Jefferson Adams

    Celiac.com 06/26/2014 - In a segment that was noteworthy for its accuracy, focus and generous time allotment, The Daily Show host, Jon Stewart, opened up about his son’s experiences with celiac disease.


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    Photo: Wikimedia CommonsFor the segment, Stewart interviewed actress and gluten-free baker Jennifer Esposito about celiac disease, and about Esposito’s new book, and gluten-free bakery, both named Jennifer’s Way.

    Esposito talked about her own years-long struggles with chronic symptoms of celiac disease, and with her difficulties in getting a proper diagnosis.

    In what might be one of the most widely watched, in depth talks about celiac disease on major television, the show devoted nearly six minutes to the subject.

    In classic Stewart style, the segment was both accurate and informative, while still remaining true to its comic roots.

    For example, Stewart was quick to point out that “…celiac disease is quite different from, what it’s called, like gluten sensitivity or the more faddish of those types of diets,” he said.

    On the comic side, Stewart noted that, for Jews, celiac disease has been described as “like Passover, but year-round” just without the matzo.
    On the more personal side, Stewart shared what celiac disease meant to him personally through the story of his son’s struggle with the condition.

    “For the boy, he was having these terrible episodes of vomiting. And then he got anemic, and we were absolutely devastated and frightened that he was dying. We couldn’t figure out what was going on.”

    Kudos to Stewart for using his show and his interview with Esposito to promote clear, accurate information about celiac disease.

    Catch the segment below, and be sure to check out the comments section to tell us what you think about such high profile, accurate, and, dare I say, entertaining coverage of celiac disease.


    Image Caption: Photo: Wikimedia Commons
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    Guest Hilary

    Posted

    I missed this show.. thanks for sharing Jefferson. Always love to hear another REAL story and not some dieter... thank you.

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    Guest Jo Ann Boyd

    Posted

    At last doctors are finally learning about celiac disease, diagnosing it and trying to help their patients. However, they need to learn more about the part nutrition plays in keeping out bodies healthy. We live in a wonderful Country, but something must be done to improve our food. Why aren't we refusing to eat GMO and/or highly processed foods (i.e. high fructose corn syrup) which are probably responsible for many food allergies and possibility other illnesses. Where is the leadership we need to clean up our food situation.

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    Guest Hawkeye

    Posted

    Thank you, Thank you for addressing this issue. It made me sad and mad, we people say to me "oh I'm going gluten free too to lose some weight" I want to scream every time I heard this. Can they not get it that it is a Disease attach with Pain and death. I'm so sick right now I'm only liquids, do you want to do that as well. Every word Jennifer and Stewart shared is so TRUE. And the doctors always think that it is all in your heard, are you stressed, maybe it just stress. Of course, we're stress we can't eat without Pain or Diarrhea, wouldn't you be stressed as well. Like Jennifer said it is NO fun to go out to dinner at all, you are a Prison in your own body.

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    Guest Jill

    Posted

    I am 100% grateful that these discussions are being had regarding the seriousness of gluten-related disorders. Jennifer Esposito's work and commitment to improving the lives of people who suffer horrible life-long symptoms is commendable and I applaud her every step of the way.

     

    It is great that Jon has the opportunity to share about his own personal experience and the fear of watching his child suffer with this. There are many of us that are going through the same thing. Jon misstated one thing in the interview and that is below (and in your article)

     

    “…celiac disease is quite different from, what it's called, like gluten sensitivity or the more faddish of those types of diets,†he said.

     

    This statement made it sound like gluten-sensitivity is a"fad diet," which is a slap in the face for those who ALSO feel like they are dying when they ingest gluten. How we wish we had the luxury of being on a fad diet and not something as horrible as gluten sensitivity. The symptoms of gluten-sensitivity are every bit as real as symptoms from celiac disease. While the conditions may be genetically different, both are severe, debilitating, REAL and those with NCGS or celiac are still fighting the same fight. Let's band together on the whole subject of gluten-related disorders.

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    Guest Ashlyn Fellman

    Posted

    I was so happy to see this and hear them talking about it. I am self diagnosed last July. My mom stopped taking me to the doctors because they never listened to me. Just told us I was eating too much, not exercising enough, I need to eat more "Healthy whole Grains"...... I was in ballet for 9 years, swimming for 7, basketball for 3, p.e. every single day. I was overweight ever since I was 6 months old. I've lost 65 pounds in 6 months, excema, headaches, bloody noses all gone, my menstrual system and thinking is 150% better, I can actually get better than c's and d's on tests and schoolwork. Gluten has messed my life up for so long, I am so happy I figured it out all on my own. I am 20 years old and still have another 100 pounds to lose. I am also the happiest I have ever been, no depression or suicidal thoughts. Eating out is the absolute worst right now.

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    Guest Brenda

    Posted

    At last doctors are finally learning about celiac disease, diagnosing it and trying to help their patients. However, they need to learn more about the part nutrition plays in keeping out bodies healthy. We live in a wonderful Country, but something must be done to improve our food. Why aren't we refusing to eat GMO and/or highly processed foods (i.e. high fructose corn syrup) which are probably responsible for many food allergies and possibility other illnesses. Where is the leadership we need to clean up our food situation.

    So agreed! When is our government going to listen to their people?

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    Guest vorsilva

    Posted

    I am 100% grateful that these discussions are being had regarding the seriousness of gluten-related disorders. Jennifer Esposito's work and commitment to improving the lives of people who suffer horrible life-long symptoms is commendable and I applaud her every step of the way.

     

    It is great that Jon has the opportunity to share about his own personal experience and the fear of watching his child suffer with this. There are many of us that are going through the same thing. Jon misstated one thing in the interview and that is below (and in your article)

     

    “…celiac disease is quite different from, what it's called, like gluten sensitivity or the more faddish of those types of diets,†he said.

     

    This statement made it sound like gluten-sensitivity is a"fad diet," which is a slap in the face for those who ALSO feel like they are dying when they ingest gluten. How we wish we had the luxury of being on a fad diet and not something as horrible as gluten sensitivity. The symptoms of gluten-sensitivity are every bit as real as symptoms from celiac disease. While the conditions may be genetically different, both are severe, debilitating, REAL and those with NCGS or celiac are still fighting the same fight. Let's band together on the whole subject of gluten-related disorders.

    I feel the same way. I am grateful for the coverage this received, but as someone who suffers from severe non celiac sensitivity, I was destroyed when they called this a fad. Like Esposito my allergy destroyed my serotonin count. I have been bombarding my body with unnecessary medications for "serotonin deficiency" that ravaged my system and eventually lead to a stroke at 36 years old. If my sister had not suspected NCGS after the attack I might still be trapped in that hell. NCGS is real. Just because there is no definitive test does not mean that it is not destroying lives. We should not be shamed because others are misinformed about this illness, especially from people who know what gluten can to to your system.

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    Guest WhollyFool

    Posted

    I am 100% grateful that these discussions are being had regarding the seriousness of gluten-related disorders. Jennifer Esposito's work and commitment to improving the lives of people who suffer horrible life-long symptoms is commendable and I applaud her every step of the way.

     

    It is great that Jon has the opportunity to share about his own personal experience and the fear of watching his child suffer with this. There are many of us that are going through the same thing. Jon misstated one thing in the interview and that is below (and in your article)

     

    “…celiac disease is quite different from, what it's called, like gluten sensitivity or the more faddish of those types of diets,†he said.

     

    This statement made it sound like gluten-sensitivity is a"fad diet," which is a slap in the face for those who ALSO feel like they are dying when they ingest gluten. How we wish we had the luxury of being on a fad diet and not something as horrible as gluten sensitivity. The symptoms of gluten-sensitivity are every bit as real as symptoms from celiac disease. While the conditions may be genetically different, both are severe, debilitating, REAL and those with NCGS or celiac are still fighting the same fight. Let's band together on the whole subject of gluten-related disorders.

    Yes, I love Jon Stewart, but I think he misspoke including gluten sensitivity as part of the fad dieting (that I think we all hate).

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    Guest john j acres

    Posted

    Gluten free food it is not a diet but a way of life , eat fruit and veggies , make your own pastries , do not buy gluten free products as they have additives & derivatives in them that is why these products are not marked "suitable for coeliacs".

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    Guest Susie

    Posted

    Thank you for sharing the interview. I'm so glad that eating out was discussed.

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    Guest Linda

    Posted

    I am 100% grateful that these discussions are being had regarding the seriousness of gluten-related disorders. Jennifer Esposito's work and commitment to improving the lives of people who suffer horrible life-long symptoms is commendable and I applaud her every step of the way.

     

    It is great that Jon has the opportunity to share about his own personal experience and the fear of watching his child suffer with this. There are many of us that are going through the same thing. Jon misstated one thing in the interview and that is below (and in your article)

     

    “…celiac disease is quite different from, what it's called, like gluten sensitivity or the more faddish of those types of diets,†he said.

     

    This statement made it sound like gluten-sensitivity is a"fad diet," which is a slap in the face for those who ALSO feel like they are dying when they ingest gluten. How we wish we had the luxury of being on a fad diet and not something as horrible as gluten sensitivity. The symptoms of gluten-sensitivity are every bit as real as symptoms from celiac disease. While the conditions may be genetically different, both are severe, debilitating, REAL and those with NCGS or celiac are still fighting the same fight. Let's band together on the whole subject of gluten-related disorders.

    Jill, thanks for saying what I was screaming at my computer! Gluten sensitivity is very real.

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    Guest Jill

    Posted

    Jill, thanks for saying what I was screaming at my computer! Gluten sensitivity is very real.

    You're welcome! Yes, gluten-sensitivity is as real as it gets. Nobody would choose to have this. People need to be careful about what they say and how they say it in the media or it will only add to the confusion. These are golden opportunities to support one another and not create a "what I have is worse than what you have..." type of situation.

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    Guest Geri

    Posted

    I am 100% grateful that these discussions are being had regarding the seriousness of gluten-related disorders. Jennifer Esposito's work and commitment to improving the lives of people who suffer horrible life-long symptoms is commendable and I applaud her every step of the way.

     

    It is great that Jon has the opportunity to share about his own personal experience and the fear of watching his child suffer with this. There are many of us that are going through the same thing. Jon misstated one thing in the interview and that is below (and in your article)

     

    “…celiac disease is quite different from, what it's called, like gluten sensitivity or the more faddish of those types of diets,†he said.

     

    This statement made it sound like gluten-sensitivity is a"fad diet," which is a slap in the face for those who ALSO feel like they are dying when they ingest gluten. How we wish we had the luxury of being on a fad diet and not something as horrible as gluten sensitivity. The symptoms of gluten-sensitivity are every bit as real as symptoms from celiac disease. While the conditions may be genetically different, both are severe, debilitating, REAL and those with NCGS or celiac are still fighting the same fight. Let's band together on the whole subject of gluten-related disorders.

    NCGS or gluten intolerance is every bit as real as symptoms from celiac disease. Mine are severe and debilitating too. Thank you for pointing out what is right and let's get more affordable gluten free foods. Gluten has harmed me beyond words.

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    Guest Amber

    Posted

    I do not have celiac disease, but I care about my health and the health of my family. So, eating gluten free is not a fad diet for me, it is an educated way to stay healthy. Although I can understand and sympathize with people who live with the pain of celiac disease, I cannot understand why it would be so upsetting that non celiac disease sufferers would aspire to healthy eating in the same fashion. I am very interested to hear thoughts.

     

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    Guest celiacMom

    Posted

    Jefferson: something else for you to write about: More than one quarter of children with two copies of a high-risk variant in a specific group of genes develop an early sign of celiac disease called celiac disease autoimmunity (CDA) by age 5. The findings are from The Environmental Determinants of Diabetes in Youth consortium, or TEDDY teddy.epi.usf.edu/. The National Institutes of Health-funded study, published July 2 in the New England Journal of Medicine www.nejm.org/doi/full/10.1056/NEJMoa1313977, also found that participants in Sweden had higher rates of celiac disease than participants in the United States, Finland and Germany, even with the same genetic risks.

    TEDDY is studying celiac disease and type 1 diabetes diabetes.niddk.nih.gov/dm/pubs/type1and2/index.aspx because both are autoimmune diseases with some of the same genetic risk factors.

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    Guest Tracy H.

    Posted

    Yes, I love Jon Stewart, but I think he misspoke including gluten sensitivity as part of the fad dieting (that I think we all hate).

    Understanding of non-celiac gluten sensitivity is where understanding of celiac disease was 20 years ago. Dissing gluten sensitivity does not help people with celiac. We have more power as one united community.

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    Guest Liane

    Posted

    I do not have celiac disease, but I care about my health and the health of my family. So, eating gluten free is not a fad diet for me, it is an educated way to stay healthy. Although I can understand and sympathize with people who live with the pain of celiac disease, I cannot understand why it would be so upsetting that non celiac disease sufferers would aspire to healthy eating in the same fashion. I am very interested to hear thoughts.

    The problem comes down to those who really don't understand much about gluten and just jump on the bandwagon of any "diet" they hear about just because it is popular. Unfortunately, there are those that will go gluten-free just because it is on the news or someone famous is on it, not because they are genuinely concerned about their health or even react to gluten in any way. For them, it is like wearing the latest fashion.

     

    When individuals like this walk into restaurants or other establishments, they sometimes make a big fuss about things being gluten-free. A waiter or server may, for whatever reason, not make any changes to spite them and then watch for a reaction. When no reaction comes, some then start believing that anyone who claims they can't have gluten is faking it. I have met people who got this impression.

     

    In other cases, a person may claim they MUST eat gluten-free but when faced with a yummy treat will give in claiming it isn't a big deal if they eat it once in a while. Again, this makes others believe that those with celiac disease don't really have to be gluten-free all the time. Therefore, they aren't as concerned about our food being gluten-free or avoiding cross-contamination. Again, I have encountered people who do this.

     

    The end results of all this is that those who do truly suffer from celiac disease or gluten-sensitivity are not taken seriously and our health is put at risk. While I don't have celiac disease, my 8 year old does. When people don't trust adults who claim to not be able to eat gluten, how are they going to trust a little girl. But for her, it is debilitating. This is the concern for the celiac disease community. We appreciate that there are more and more option for us, but sometimes too much bad publicity can physically hurt us.

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    Guest Sarah

    Posted

    I have been anemic for numerous years. I had diarrhea and it was suggested I was stressed. I was terribly stressed at work and felt that was the reason. A few years later after numerous surgeries for other reasons my diarrhea stopped. I always felt sluggish and super depressed. I began breaking out in small water blisters on knees and elbows and later my face. My primary had zero idea. When they moved to my scalp my daughter, a hairdresser, had me try many types of shampoos. I was finally sent to a dermatologist. He took a punch biopsy on my forearm and I was diagnosed with celiac. He said I had celiac and it was manifesting itself as an auto immune skin disorder. I removed all gluten and feel better than I have in years. My niece also has been diagnosed as well, but hers is the typical in the gut form. Since being off gluten I have been exposed through contamination at a restaurant who did not take me seriously and laud bread on my meat. I sent it back and was assured it was not the same meat and I ate it. Within twenty minutes my forehead was breaking out. I too am tired of people thinking this is a diet of choice and the foods that are gluten free can be very expensive!!! It's not a choice! Thanks you for bringing this topic up!

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    Guest Jefferson

    Posted

    Jefferson: something else for you to write about: More than one quarter of children with two copies of a high-risk variant in a specific group of genes develop an early sign of celiac disease called celiac disease autoimmunity (CDA) by age 5. The findings are from The Environmental Determinants of Diabetes in Youth consortium, or TEDDY teddy.epi.usf.edu/. The National Institutes of Health-funded study, published July 2 in the New England Journal of Medicine www.nejm.org/doi/full/10.1056/NEJMoa1313977, also found that participants in Sweden had higher rates of celiac disease than participants in the United States, Finland and Germany, even with the same genetic risks.

    TEDDY is studying celiac disease and type 1 diabetes diabetes.niddk.nih.gov/dm/pubs/type1and2/index.aspx because both are autoimmune diseases with some of the same genetic risk factors.

    Thanks! I'll look into that.

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    The problem comes down to those who really don't understand much about gluten and just jump on the bandwagon of any "diet" they hear about just because it is popular. Unfortunately, there are those that will go gluten-free just because it is on the news or someone famous is on it, not because they are genuinely concerned about their health or even react to gluten in any way. For them, it is like wearing the latest fashion.

     

    When individuals like this walk into restaurants or other establishments, they sometimes make a big fuss about things being gluten-free. A waiter or server may, for whatever reason, not make any changes to spite them and then watch for a reaction. When no reaction comes, some then start believing that anyone who claims they can't have gluten is faking it. I have met people who got this impression.

     

    In other cases, a person may claim they MUST eat gluten-free but when faced with a yummy treat will give in claiming it isn't a big deal if they eat it once in a while. Again, this makes others believe that those with celiac disease don't really have to be gluten-free all the time. Therefore, they aren't as concerned about our food being gluten-free or avoiding cross-contamination. Again, I have encountered people who do this.

     

    The end results of all this is that those who do truly suffer from celiac disease or gluten-sensitivity are not taken seriously and our health is put at risk. While I don't have celiac disease, my 8 year old does. When people don't trust adults who claim to not be able to eat gluten, how are they going to trust a little girl. But for her, it is debilitating. This is the concern for the celiac disease community. We appreciate that there are more and more option for us, but sometimes too much bad publicity can physically hurt us.

    Liane - I agree with you 100%. My son is 10 and 9 mos diagnosed celiac. Everything has changed for him, his teachers say it is like he is on medication. He can focus in class, frustration levels are almost gone, and many more improvements. However, we have run into many many people, even kids who go gluten free for the benefits, say they are gluten free but "today" they are just going to have that burger on the bun. Here is my 10 year old, who finds so much relief in others who are gluten free because they have a "reaction", sitting next to his gluten allergy friend eating a burger or cupcake or whatever it is that my son can't risk having. This is devastating to him, why can they have it just once and he cannot? This is WHY people with celiac disease struggle with the gluten allergy diagnosis. I am happy that everyone, even the fad dieters are bringing gluten-free diet into the limelight but that is a significant lack of understanding or regard to the serious nature of the autoimmune disease itself. This is our biggest challenge right now.

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    Guest Melissa

    Posted

    I am 100% grateful that these discussions are being had regarding the seriousness of gluten-related disorders. Jennifer Esposito's work and commitment to improving the lives of people who suffer horrible life-long symptoms is commendable and I applaud her every step of the way.

     

    It is great that Jon has the opportunity to share about his own personal experience and the fear of watching his child suffer with this. There are many of us that are going through the same thing. Jon misstated one thing in the interview and that is below (and in your article)

     

    “…celiac disease is quite different from, what it's called, like gluten sensitivity or the more faddish of those types of diets,†he said.

     

    This statement made it sound like gluten-sensitivity is a"fad diet," which is a slap in the face for those who ALSO feel like they are dying when they ingest gluten. How we wish we had the luxury of being on a fad diet and not something as horrible as gluten sensitivity. The symptoms of gluten-sensitivity are every bit as real as symptoms from celiac disease. While the conditions may be genetically different, both are severe, debilitating, REAL and those with NCGS or celiac are still fighting the same fight. Let's band together on the whole subject of gluten-related disorders.

    Thank you for expressing my feelings so well. I was extremely dismayed by the comment (and other comments in the segment) and that is the only reason I rated the article with 3 stars. This segment may have highlighted celiac disease, but it set back the oftentimes extreme gluten sensitivity issue (and oftentimes misdiagnosed as not celiac disease).

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    Celiac.com 07/31/2006 - The National Institutes of Health (NIH) today announced the launch of a campaign to heighten awareness of celiac disease, an autoimmune disorder that interferes with the absorption of nutrients from food. The campaign stems from consensus recommendations of an independent panel of experts convened by the NIH to assess current diagnosis, treatment, and management of the disease.
    “We now know that celiac disease is more prevalent that previously thought — affecting nearly 1 percent of the U.S. population — and remains under-diagnosed,” said Griffin P. Rodgers, M.D., acting director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the NIH institute leading the effort. “Through the campaign, we hope to increase physician awareness of the disease, resulting in earlier diagnosis and better outcomes for celiac patients.”
    Developed by the NIDDK, with coordination among the professional and voluntary organizations working on celiac disease, the campaign offers materials and resources for health professionals and the public about the symptoms, diagnosis, treatment, and management of celiac disease. The campaign offers fact sheets, booklets, practice tools for health professionals, NIH research information, and resources from professional and voluntary organizations that focus on celiac disease.
    Celiac disease is an autoimmune response to gluten, a protein found in wheat, rye, and barley. Symptoms of celiac disease range from gas, diarrhea, and abdominal pain, to delayed growth, certain skin rashes, infertility, and osteoporosis. Treatment for celiac disease is adherence to a gluten-free diet.
    “One of the challenges with celiac disease is the vast array of symptoms associated with the disease,” said Stephen P. James, M.D., director of the Division of Digestive Diseases and Nutrition (DDN) at the NIDDK. “We are hoping to educate health professionals and the public that celiac disease is not only a gastrointestinal disease.”
    The NIDDK, part of the National Institutes of Health (NIH), conducts and supports research on diabetes; endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans.
    The National Institutes of Health (NIH) — The Nations Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases.
    CONTACT:
    Melissa McGowan
    301-496-3583

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    Celiac.com 09/28/2006 - The Childrens Hospital of Philadelphia announces the establishment of the Center for Celiac Disease, a multidisciplinary resource created to diagnose, treat and provide support for patients and families with celiac disease. "A person with celiac disease is unable to digest gluten, a common ingredient found in many foods, including bread, pasta and even condiments," said Ritu Verma, M.D., gastroenterologist and director of the Center for Celiac Disease at Childrens Hospital. "This inability to digest gluten damages the lining of the small intestine and prevents the body from absorbing essential nutrients. The only treatment for celiac disease is a strict gluten-free diet."
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    "Celiac disease not only affects the child diagnosed with the disease, but also the entire family because treatment requires a drastic change in lifestyle and diet," said Jennifer Autodore, R.D, LDN, clinical nutritionist at Childrens Hospital. "That is why at Childrens Hospitals Center for Celiac Disease we offer care from highly-trained specialists, in addition to family education sessions and support groups where information about the latest gluten-free restaurants and recipes is shared. The Center also provides comprehensive family screenings and support and direction to advocate for gluten-free menu items in the childrens schools."
    The Center for Celiac Disease at The Childrens Hospital of Philadelphia is one of the largest resources in the Northeast United States, dedicated solely to the care of children with celiac disease. The Center currently treats more than 350 patients from Pennsylvania, Delaware, and New Jersey. For more information on the Center for Celiac Disease please visit http://www.chop.edu or call 215-590-1680 to make an appointment.
    The Childrens Hospital of Philadelphia was founded in 1855 as the nations first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Childrens Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country, ranking second in National Institutes of Health funding. In addition, its unique family-centered care and public service programs have brought the 430-bed hospital recognition as a leading advocate for children and adolescents.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 07/30/2009 - Here is Dr. Ron Hoggan's response to Slate's unfortunate article "Throwing Out the Wheat" which was written by Daniel Engber:
    Dear Mr. Engber,
    You represented Dr. Fasano as saying:
    “For every patient whose intestinal biopsy turns up positive, he says, nine or 10 more test clean but commit to going gluten-free all the same.”
    This ratio is well established in the medical and scientific literature. The rate of gluten sensitivity, as measured by IgA and IgG antibodies against gliadin, (a protein family that is a sub-group of gluten) constitutes about 10% to 12% of the general population.  That is about ten times the rate of celiac disease found in the general population.
    These anti-gliadin antibodies (AGA) clearly demonstrate that gliadin proteins or derivative peptides are reaching the bloodstream and sensitizing the immune system to this foreign (non-self) protein.  Many of these gluten sensitive individuals experience all of the same signs and symptoms as celiac patients.
    Similarly, you state: “Since there's no way to "prove" a case of gluten-intolerance in the lab...”
    This is grossly inaccurate. Although many practitioners will state that AGA are non-specific, I doubt that any of them would argue against the statement that the presence of AGA clearly indicates that gliadin or its fractions have managed to get into the bloodstream. When they say AGA are non-specific, they simply mean that these antibodies are not associated with any specific disease. They seem to be found in a wide range of autoimmune diseases, cancers, and behavioral/psychiatric disorders.
    You also say: “If you're paying more attention to what you eat, there's a good chance your symptoms will lessen. That's not because gluten or red meat or another food is damaging your small intestine; it's because eating less makes it easier for your gut to recover.”
    This assertion is based on a flawed assumption. Gluten-free foods are much more calorie-dense than those made with gluten. Thus, a common mistake made by those beginning a gluten-free diet is to eat about the same quantities they are used to eating. For instance, if one is in the habit of taking two sandwiches in their lunch, they are likely to pack two gluten free sandwiches. Since the gluten-free bread is much more nutrient dense. Increased nutrient densities apply to pasta, baked goods, and almost all gluten-free substitutes. Thus, the switch to eating a gluten-free diet usually leads to eating less, not more, as you claim in the above statement.
    Later you state: “Chances are you'll have reduced your total intake of carbs, and thus the amount of α-amylase in your gut.”  For the reasons stated above, this is also inaccurate.
    You go on to say: “In other words, the mere fact of being on a gluten-free diet could make you more sensitive to grains and cereals—which would only reinforce your conviction that you're gluten-intolerant.”
    I am not aware of any data indicating a reduction of alpha almylase in the context of a gluten free diet. I would be amazed if you can find any such data. It reflects an assumption about the production and function of amylase that appears indefensible to me.
    The low carb craze has followed a very different path to the media, and began with a fellow named Banting in the 1800s whose doctors suggested a low carb diet to him as a means of losing weight. It worked, and he published a pamphlet about it. It saw a resurgence in the form of a ketogenic diet in the 1920s, at Johns Hopkins, as a treatment for epilepsy. Subsequent development of anti-seizure medications during the 1930s left the treatment without any patients, so it was abandoned until 1997 with the airing of First Do No Harm, a movie about one child’s plight and his parents’ struggle to find a treatment for his life threatening seizures.
    Meanwhile, research suggested that the growth of insulin sensitive tumors might be stalled by a ketogenic diet, and various case reports and subsequent clinical trials both support that perspective and indicate that most folks won’t maintain such a boring diet.
    The gluten-free diet was suggested by a concerned mom in 1932 and it was fully 18 years before Dr. Willem Karel Dickie’s doctoral thesis would be accepted and the world would begin to treat celiac disease with a gluten free diet.
    I won’t bore you with the details of this evolution but there are many twists and turns to the story of gaining acceptance of a gluten-free diet for the effective treatment of celiac disease.
    Both of these developments occurred quite separately. The two things they have in common are:
       1. They both gained popular notice and support through the Internet, and;
       2. They both defied conventional medical wisdom when they were first considered.
    Your graph simply identifies the impact that the Internet has had on democratizing health care.
    Your ill-informed attack on a gluten free diet is regrettable because it suggests it is a fad diet rather than a therapeutic one. At best, that will make it more difficult for people to get cooperation when trying to look after their own health by avoiding gluten. At worst, it will dissuade people from sticking to their diets if they believe your false assertion that gluten sensitivity cannot be identified in a lab. It can be, and is, on a very regular basis. 
    Your information on celiac disease was mostly well researched and solid, but you clearly did not put any thought or effort into finding out about gluten sensitivity (often called gluten intolerance). I wish you would correct some of this misinformation, as it is really misleading and potentially harmful.

    Daniel Engber responded to the above email insisting that “it's impossible to prove gluten intolerance in the lab.” And that “Many of the strongest advocates for those with this condition describe it as one that can only be diagnosed by process of elimination.  Or, to be more specific, by an elimination/reintroduction test.”
    He also challenged me asking if
    “All those who have AGA are gluten-intolerant?”

    Then he said that he just doesn’t believe it. 

    Here is my reply:
    July  31, 2009
    Hi Daniel,
    Thanks for your response.
    I don't know who these "strongest advocates" are, but your information about elimination/reintroduction testing being the only way gluten sensitivity is absolutely inaccurate. Check with any reputable blood testing lab that does IgA and/or IgG anti-gliadin antibody testing. They will set you right on this score.
    The presence of AGA in the bloodstream is clear, incontrovertible evidence that the body is mounting an immune response against gluten. This antibody reflects a delayed-type food sensitivity that is sometimes erroneously called an allergy.  This is gluten sensitivity. It may be transient, chronic, or permanent, but there can be no doubt that it reflects the condition that is referred to as gluten intolerance. Not everyone who is gluten sensitive will show these antibodies but, yes, everyone who shows these antibodies is gluten sensitive. It is a basic principle of immunology that elevated selective antibodies reflect prior or current exposure of these antigens to the bloodstream.
    You must have spoken with Alessio Fasano to get that quote. Just ask him about AGA testing. He will tell you the same thing I'm telling you. I have discussed these and related matters with him at some length.
    I think you are mistaken in your claim that you linked to anything that Joe Murray said. I'll be very surprised if he has said anywhere that a gluten-free diet leads to eating less (although he has repeatedly said it can cause weight loss in the context of celiac disease). Could you tell me where this link appears?
    Nonetheless, even if the volume of food consumed is less (more on that in a moment) the increased caloric density would very likely be offset by the significant increase in caloric density of gluten-free foods. While Dr. Murray has treated and spoken with many more celiac than I have, I'd be willing to wager that I have observed many more of them while eating. :-)
     
    Apparently I misunderstood your thesis. I took you to say that public awareness of low-carb/Atkin's dieting and gluten sensitivity followed a largely parallel path because they are both pop culture trends that reflect a kind of hysteria about nutrition that is not based on science. Thus, I offered some data showing that the rise in public awareness of these two nutritional perspectives are based on scientific insights and the rapid increase of public awareness of these issues in 2004 and 2006-2008 was probably the result of improved access to information on the Internet in combination with scientific discoveries during those periods. I should have detailed the discovery and development of serological tests for celiac disease and gluten sensitivity as well as the research that began to reverse the vilification of saturated fats at about the same time.
    (snip)
    The vast majority of those eating a gluten-free are eating a very high carb diet. On this issue your article is quite misled and misleading. Please take the time to respond again, as I am most interested in that link to Joe Murray's comments. I also urge you to look at the significance and nature of AGA serum antibodies. Gluten sensitivity is readily demonstrated by these simple blood tests.
    Best Wishes,    
    Ron
     

    Monday, August 03, 2009 4:50 PM
    Dan replied admitting that he had not, after all, linked to an article by Joe Murray. The link he apparently intended to put in was the following: http://www.montanaceliacsociety.com/physiciansmanual.htm
    I responded with the following message:
    Mon 8/3/2009 9:02 PM
         
    Hi Dan,
    I gave you the wrong url. Please try this one:
    https://www.celiac.com/gluten-free/index.php?showtopic=60511
    I'm wondering how you can continue to assert "it's impossible to prove gluten intolerance in the lab" when I have given you ample information to the contrary as well as directing you to blood testing labs (Great Smokies, Immuo, Imco Diagnostics, etc. etc.) that will verify my assertion. There is also a wealth of information in the peer reviewed medical literature supporting what I'm saying. I'd be happy to provide a list of relevant research reports if you are interested.  
    You don't mean to suggest that this quote from Joe Murray somehow justifies your above assertion do you? Just pick up a telephone and give him a call. I'm very confident that he will not support your notion that gluten sensitivity cannot be identified in the lab. Do remember that Dr. Murray is a sub-specialist in celiac disease. He may not be a big fan of assertions of non-celiac gluten sensitivity, but he won't deny that the AGA blood tests establish immune sensitization and hence, gluten sensitivity. Rodney Ford and Marios Hadjivassiliou are a couple of other world renowned researchers who are reporting AGA as a significant marker of serious disease in the absence of celiac disease.
    Your assertion that "it's impossible to prove gluten intolerance in the lab" was the lynchpin of your entire article. Without it, you may have to acknowledge that you have just discredited a group of people who, on the basis of solid science, are trying to improve their health. Yet you have set back their relationships with skeptical family members and friends based on your inadequate research.
    I really do think that you owe these people a retraction or at least a statement that mitigates some of the damage your article is doing. 
    Sincerely,
    Ron

    Tuesday, August 04, 2009 3:14 AM
    Dan responded saying that  he thought we were having a semantic argument.  It became clear to me that he was confusing gluten sensitivity with gluten sensitive enteropathy – which is another name for celiac disease. He thought I was talking about latent  celiac disease.

    He insisted again that gluten intolerance is not defined by any standard such as celiac disease is. He went on to say: 
    “If you want to define "gluten intolerance" and/or "gluten sensitivity" so it applies to some subgroup of those who suffer from symptoms related to gluten, that's fine with me.  I'm using the phrase "gluten intolerance" to describe all those who experience relief from the gluten-free diet without having been diagnosed with celiac.”
    I responded with the following:
    From: Ron Hoggan, Ed. D.
    Tue 8/4/2009 11:01 AM
    To: Daniel Engber
    Subject: RE: Throwing Out the Wheat
    Hi Dan,
    It sounds like you may be confusing gluten sensitive enteropathy with gluten sensitivity. The former is a descriptive name for celiac disease, while the latter indicates an immune system sensitized to gliadin.
    Selective antibodies are produced in response to foreign proteins or peptides that have breached a barrier (skin or mucosal) and are now present in the bloodstream or imbedded in self tissues. The immune system reacts as if these foreign proteins were bacterial invaders. (In fact, they are cytotoxic and neurotoxic but that is not at issue here (1, 2). If there was only one event during which gliadin proteins or peptides reached the circulation, as might be the case during a bout of flu, for instance, AGA levels usually diminish quite quickly. Thus, when a person shows elevated levels of AGA, the condition is usually chronic. It indicates that they are leaking gliadin proteins and/or peptides into the bloodstream. Celiac disease only afflicts between 10% and 15% of these people with elevated AGA. Serological tests for celiac disease identify endomysium antibodies (EMA) and tissue transglutaminase (tTG). There is no debate about the foregoing. It is common knowledge and is accepted by the vast majority of researchers and practitioners working in this area.
    The controversy comes in when we ask what elevated AGAs mean. Many claim that it is a non-specific finding. That is, AGAs are not diagnostic for celiac disease or any other currently recognized disease. They are much more common among those with autoimmune diseases, AIDS, and several other groups, but they do not provide any clues that will help diagnose a particular illness. AGAs are also found in some apparently healthy individuals. The only condition for which they fairly specific is what is often called a "leaky gut". However, most practitioners do not recognize increased intestinal permeability as a disease entity. There is no debate regarding the connection between elevated AGAs and leakage of gliadin into the body. In the past, the debate has been about whether AGAs are diagnostic for any disease and whether a leaky gut is an issue of any real concern.
    However, in the late 90s, researchers at U. Maryland, working to develop a cholera vaccine, found a protein messenger called zonulin. As its presence increases in the intestinal lumen, it relaxes the tight junctions between gut epithelial cells (3). Zonulin is overproduced by some individuals in response to gluten ingestion. It turns out that those with celiac disease, type 1 diabetes, and a variety of autoimmune diseases are particularly inclined to produce excessive quantities of zonulin in response to gluten ingestion (4).      
    Similarly, Marios Hadjivassiliou and his neurological research group at the Royal Hallamshire Hospital in Sheffield have found that AGA are elevated in more than half of all patients with neurological disease of unknown origin and only about a third of those have celiac disease. The remaining two thirds are simply gluten sensitive, as identified by AGA (5). 
    Variation in zonulin production, from one individual to another, is likely the factor that determines gluten sensitivity.
    Gluten sensitivity does not identify celiac disease, latent celiac disease, or any other enteropathy that I'm familiar with. It identifies an immune system sensitized to gluten. Avoidance of gluten in such cases can help to avoid developing additional autoimmunity, just as it sometimes does in celiac disease, but current evidence suggests that it will usually not reverse it once that autoimmunity has begun.   
    The use of Rodney Ford's term "gluten syndrome"(2) might well have saved us considerable cyber ink, as we might have been able to begin by disagreeing about the value of a gluten free diet across the gluten syndrom spectrum, rather than taking several emails to determine that you were equating gluten sensitivity with celiac disease.
    Best Wishes,
    Ron
    Sources:
    Paganuzzi AS, Zucco F, Cardelli M, de Angelis I, Mattei R, Pino A, Rocca E, Zampaglioni F.Cytotoxic effects of wheat gliadin-derived peptides.Toxicology. 1985 Dec;37(3-4):225-32. Ford RP.The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29. Drago S, El Asmar R, Di Pierro M, Grazia Clemente M, Tripathi A, Sapone A, Thakar M, Iacono G, Carroccio A, D'Agate C, Not T, Zampini L, Catassi C, Fasano A.    Gliadin, zonulin and gut permeability: Effects on celiac and non-celiac intestinal mucosa and intestinal cell lines.Scand J Gastroenterol. 2006 Apr;41(4):408-19. Visser J, Rozing J, Sapone A, Lammers K, Fasano A.  Tight junctions, intestinal permeability, and autoimmunity: celiac disease and type 1 diabetes paradigms. Ann N Y Acad Sci. 2009 May;1165:195-205. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A.  Does cryptic gluten sensitivity play a part in neurological illness?  Lancet. 1996 Feb 10;347(8998):369-71. Clemente MG, De Virgiliis S, Kang JS, Macatagney R, Musu MP, Di Pierro MR, Drago S, Congia M, Fasano A. Early effects of gliadin on enterocyte intracellular signalling involved in intestinal barrier function.Gut. 2003 Feb;52(2):218-23.  
    Note:
    I should have added that since Dan was using the phrase gluten intolerance “to describe all those who experience relief from the gluten-free diet without having been diagnosed with celiac,”  he has defeated his own argument. If a person has symptoms and they get relief from a gluten free diet, they would have to be pretty self destructive, foolish, or self-indulgent to go back to eating gluten.

    In a private email I received from another person, he said: “After reading his original article I had the distinct feeling that a girlfriend of his (or friend/relative) had gone on a gluten-free diet and had recently dumped him--maybe because he wasn't so supportive of this change...but I don't have any proof... ”

    I am most inclined to agree with this poster’s suspicions.

    Finally, I forwarded a copy of the letter titled: “Is gliadin really safe for non-coeliac individuals? Production of interleukin 15 in biopsy culture from non-coeliac individuals challenged with gliadin peptides” by D Bernardo1, J A Garrote2, L Fernández-Salazar3, S Riestra4, E Arranz5 from  Gut 2007;56:889-890; doi:10.1136/gut.2006

    These investigators report that “gluten elicits its harmful effect” on all the individuals they studied, not just those with celiac disease. I believe that Jefferson Adams has written a detailed account of this research that appears elsewhere on celiac.com. 

    Although Mr. Engber declined to give me permission to publicly post his emails, and hence, his side of this discussion, I have invited Dan to respond to the above on celiac.com, as I would like to give him every opportunity to either provide some evidence to support his unfortunate claims about non-celiac gluten sensitivity, or to retract his damaging comments in the original article he penned. Although I have been a little rough on him, I do hope he will present his side of this debate, as it is of great importance to many individuals who must negotiate with friends and relatives to safeguard their health.

    These people would not dream of casually scattering rat poison on food to be served to a loved one. However, they seem to feel imposed upon by those who are gluten sensitive, because they do not want gluten scattered on their food. This attitude is just as inappropriate and sometimes, just as dangerous as scattering rat poison on food. 

    Sincerely,
    Ron Hoggan
     
     
     
     

    Jefferson Adams
    Celiac.com 02/29/2012 - Gluten-free confections created by a baker from Lake Oswego, Oregon, topped the competition on the latest installment of the Food Network's "Cupcake Wars."
    The winning gluten-free cupcakes were the work of Kyra Bussanich, 33, who opened Crave Bake Shop at 460 Fifth Street, in downtown Lake Oswego, in mid-2011.
    No stranger to the competition, Bussanich finished as first runner-up on the program last year. That was good enough to earn her place as one of four pastry chefs invited back to the televised cupcake competition.
    Bussanich, is the first gluten-free baker to win the show's top spot, producers told her. She is also the only Pacific Northwest resident to win the competition.
    The show's theme celebrated the 100th Episode of the TNT television series, "The Closer," starring Kyra Sedgwick. Bussanich responded with intricately decorated, coffee and doughnut-themed cupcakes to honor the cop drama.
    As a part of her $10,000 prize, Bussanich and her assistant Jackie Eizik, catered a party for Sedgwick and other cast and crew from "The Closer." Bussanich says that her victory in "Cupcake Wars" provides a stage not only for her online shop, but for gluten-free foods in general. She herself doesn't tolerate the wheat and other proteins so central to most baked goods, she rejects the idea that being gluten-free means eating blandly. "Gluten-free can be divine," she says.
    "Cupcake Wars" will appear in the coming weeks on the Food Network.
    Read: Kyra Bussanich's winning recipe for Boston Cream Pie cupcakes from Food Network's The Closer 100th Episode.
    Source:

    http://www.oregonlive.com/lake-oswego/index.ssf/2011/12/lake_oswego_baker_wins_food_ne.html

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    Tammy Rhodes
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    Jefferson Adams
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    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
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    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
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    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764