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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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    COMPANY TESTING DRUG THAT PROTECTS CELIAC SUFFERERS AGAINST GLUTEN CONTAMINATION


    Jefferson Adams

    Celiac.com 03/11/2013 - People with celiac disease must follow a gluten-free diet if they want to remain healthy, but a 200-patient study conducted by Alvine Pharmaceuticals show that 90 percent of celiac patients who followed a gluten-free diet still reported symptoms of the disease.


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    Photo: CC--winnifredxoxoThat reality is helping to drive an effort by Alvine to develop a drug that would help those people to avoid symptoms and damage that come with accidental exposure to gluten.

    According to a recent press release, Alvine had already raised at least $42 million for its celiac disease drug, and now has $6 million more as it works through a second phase 2 trial.

    The company's top drug prospect is ALV003, a mix of two recombinant gluten-specific proteases that’s designed to be used along with a gluten-free diet to prevent immune reactions associated with celiac disease.

    As disclosed in a recently filed U.S. Securities and Exchange Commission document, the company has raised at least $6 million in debt and other non-equity securities, and could raise up to $500K more.

    ALV003 is designed to be taken orally by people with celiac disease at the time of a meal. It mixes with and breaks down the gluten in food before it can reach the small intestine, where it would cause inflammatory responses.

    The drug is designed to prevent accidental gluten contamination, not to allow celiac sufferers to freely and safely consume large amounts of gluten.

    In a phase 2a study, ALV003 met its goals and reduced gluten-induced intestinal injury in celiac patients who were already following a gluten-free diet. According to clinicaltrial.gov, ALV003 is presently in a study phase with a March 2013 completion date.

    In the fall of 2012, Alvine received permission from the U.S. Food and Drug Administration to fast-track ALV003, which means the company can work more closely with the FDA during clinical trials, and may get a faster review if they file a New Drug Application.

    Alvine is a San Carlos, California-based biopharmaceutical company founded in 2006 on technology from Stanford University. Its investors include Abbott Biotech Ventures, Panorama Capital, InterWest Partners, Prospect Venture Partners, Sofinnova Ventures, Black River Asset Management and Flagship Ventures.

    Read more here.


    Image Caption: Photo: CC--winnifredxoxo
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    Guest Gluten Free Foodies

    Posted

    Oh dear. We need to get away from the idea of popping a pill to solve our problems. Big pharma is only interested in profits, not health.

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    I don't like the idea of pill popping any more than the next person, but I find the cross contamination issue in our food chain to be an insurmountable obstacle in trying to be gluten-free. My main celiac symptom is a rash that is very sensitive to gluten. In spite of eating a very clean diet and almost never eating out, I have a few small blisters almost all the time. I find that eating things like nuts or quinoa (or anything really) can cause a break out, even though the packaging doesn't declare a shared equipment situation. I would bet that most people are getting more gluten than they realize and just don't have the sensitive detection system I have. (I call it my canary in the mine.) If there were a pill that could clean up the small amounts of gluten in food, it would certainly make my life easier and maybe help those that believe they are eating gluten-free but still have unexplained symptoms.

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    Guest dappy

    Posted

    This claim has been around for years - I remember going to a seminar back when I was diagnosed in 2007. Never seems to actually go anywhere though.

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    Guest Penny

    Posted

    Pharmaceuticals definitely make the world a better place, the problem is how they are marketed and abused by people. I am celiac and have been gluten-free for a few years now, but it's almost impossible to avoid accidental glutening and cross-contamination, even though I have drastically altered my life. I, for one, would welcome something that would help me from accidental gluten ingestion. Then I could actually occasionally go out to dinner, etc. without it being such a stress-filled game of Russian roulette. If we don't encourage companies to do research, it will never happen.

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    I don't like the idea of pill popping any more than the next person, but I find the cross contamination issue in our food chain to be an insurmountable obstacle in trying to be gluten-free. My main celiac symptom is a rash that is very sensitive to gluten. In spite of eating a very clean diet and almost never eating out, I have a few small blisters almost all the time. I find that eating things like nuts or quinoa (or anything really) can cause a break out, even though the packaging doesn't declare a shared equipment situation. I would bet that most people are getting more gluten than they realize and just don't have the sensitive detection system I have. (I call it my canary in the mine.) If there were a pill that could clean up the small amounts of gluten in food, it would certainly make my life easier and maybe help those that believe they are eating gluten-free but still have unexplained symptoms.

    I agree with you. Despite being very careful, including keeping my home gluten-free, with lab tests and endoscopy that have normalized on a gluten-free diet, I still often have symptoms. My son also has celiac disease, and since I am so sensitive to tiny bits of cross-contamination, I jokingly say that I can test foods out for him and tell him if they're safe (or not).

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    Guest AnnaH

    Posted

    I agree with Sue. There is lots of cross contamination in most foods. I take digestive enzymes and probiotics with almost every meal. It really helps. If this pill (proteaze enzymes) can help digest the minute amounts of gluten that we inadvertently, accidentally eat, I am all for it. The article states that it is not so Celiac people will be able to eat large amounts of gluten. It is about time for this to happen!

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    Guest larry mac

    Posted

    I doubt if the naysayers here would tell their doctor "no thanks, I don't need antibiotics for this infection", "no treatment for my breast cancer thank you", "my child's ear infection will clear up on its own". If you don't like "popping pills," good for you. But thank God there are greedy researchers out there trying to help those that need and want treatments to help their suffering.

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    Guest maverita

    Posted

    My symptoms continued until I eliminated xanthum gum from my diet in addition to being gluten-free, and my gut permeability finally improved. I am pretty healthy these days and thankful that someone alerted me to the potential problem with xanthum gum, which they seem to put in ALL the gluten-free products these days. I even found it in pineapple juice and moisturizers. Doctors remain ignorant about the allergenic effects of xanthum gum.

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    My symptoms continued until I eliminated xanthum gum from my diet in addition to being gluten-free, and my gut permeability finally improved. I am pretty healthy these days and thankful that someone alerted me to the potential problem with xanthum gum, which they seem to put in ALL the gluten-free products these days. I even found it in pineapple juice and moisturizers. Doctors remain ignorant about the allergenic effects of xanthum gum.

    Why are you suggesting that doctors are "ignorant"? If you have found a cause for your symptoms, that is good. For most people with celiac disease, xantham gum is considered to be permitted.

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    Guest Julie

    Posted

    I'm all for it as well. If a person doesn't want to take them, more power to you. Don't take them. But for people who want to see if something can improve their symptoms and quality of life - they should have the right to try it.

     

    I also take probiotics every day and digestive enzymes with every meal. I don't know how I would get by without them. I was a sickly human being before I discovered those, and I discovered them 20 years before I got a diagnosis of celiac disease. Those pills kept me alive and relatively healthy.

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    Guest Ladybug

    Posted

    Apparently I am in the minority, but just like people take medicine for type 1 diabetes, I would take medicine for celiac disease.

    I would be happy to take pill - medicine or probiotic - so I could safely eat a meal out. I would also happily take medicine so I could eat a piece of my children's birthday cake with them. If you don't want to take pills, awesome, don't. If you don't want to read about medicine being developed for celiac disease, don't.

    I am happy to read about advances, research, and possible medication to keep my auto immune disease from hurting me!

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    Guest Chris

    Posted

    @Sue: Be very wary. Many nut and seed packagers 'dust' their products with wheat flour to prevent sticking and clumping. They seldom if ever report this on the label because they don't consider the flour to be a 'product.' About the only way to test for this at the moment is to discover by trial and error which brands cause problems.

     

    @SueN: There is a big difference between ignorant and stupid. There are very few stupid doctors. Ignorance on the other hand is 'not having sufficient information.' Any doctor who graduated before 1995 will not have learned anything about celiac disease other than the name in class. If they haven't read about recent discoveries in medical journals, they may in fact be ignorant of celiac disease facts.

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    Pharmaceuticals definitely make the world a better place, the problem is how they are marketed and abused by people. I am celiac and have been gluten-free for a few years now, but it's almost impossible to avoid accidental glutening and cross-contamination, even though I have drastically altered my life. I, for one, would welcome something that would help me from accidental gluten ingestion. Then I could actually occasionally go out to dinner, etc. without it being such a stress-filled game of Russian roulette. If we don't encourage companies to do research, it will never happen.

    I'm in agreement with Sue and Penny, and although I refuse to take some medications, this pill would make life so much easier, though of course it depends what the ingredients and possible side effects are. It also depends on the price. I am also lactose intolerant, and I love cheese and there is a pill to take to reduce lactose on consumption but it is so ridiculously expensive here in Spain.

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    Guest Ursula

    Posted

    I don't like the idea of pill popping any more than the next person, but I find the cross contamination issue in our food chain to be an insurmountable obstacle in trying to be gluten-free. My main celiac symptom is a rash that is very sensitive to gluten. In spite of eating a very clean diet and almost never eating out, I have a few small blisters almost all the time. I find that eating things like nuts or quinoa (or anything really) can cause a break out, even though the packaging doesn't declare a shared equipment situation. I would bet that most people are getting more gluten than they realize and just don't have the sensitive detection system I have. (I call it my canary in the mine.) If there were a pill that could clean up the small amounts of gluten in food, it would certainly make my life easier and maybe help those that believe they are eating gluten-free but still have unexplained symptoms.

    Hi Sue, I have celiac disease and found out that the thyroid medicine that I take every day has a trace of gluten. So does my foundation, mascara, shampoo, face cream, hair dye, etc.!!! None of the companies can state that any of their products are gluten-free... It's a real pain in the X#*! I too get the rash on my face. Best wishes!

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    @Sue: Be very wary. Many nut and seed packagers 'dust' their products with wheat flour to prevent sticking and clumping. They seldom if ever report this on the label because they don't consider the flour to be a 'product.' About the only way to test for this at the moment is to discover by trial and error which brands cause problems.

     

    @SueN: There is a big difference between ignorant and stupid. There are very few stupid doctors. Ignorance on the other hand is 'not having sufficient information.' Any doctor who graduated before 1995 will not have learned anything about celiac disease other than the name in class. If they haven't read about recent discoveries in medical journals, they may in fact be ignorant of celiac disease facts.

    First, the word "ignorant" has negative connotations. Whether or not the writer of the comment intended this, I do not know. But we should all be careful how we talk about groups of people, including doctors.

    Second, if doctors counted only on their in-class learning to treat patients, we would all be in big trouble. Doctors share information with each other, read medical journals, attend lectures and conferences, and are required to adhere to CME (continuing medical education) requirements in order to maintain licensure.

    Third, yes, of course, some doctors are going to know more about celiac disease than other doctors. The standard of care with regard to this disease, and many others, is changing, in terms of including it in the differential diagnosis when a patient presents with symptoms. So, more and more, doctors are thinking about celiac disease. Many of us have had delays in diagnosis of celiac disease and other conditions. And many of us have struggled to figure out what foods impact us negatively. But this is generally not because of "ignorance" on the part of doctors.

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    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    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.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    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