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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 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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    A DIFFERENTIAL DIAGNOSIS: HOW PELLAGRA CAN BE CONFUSED WITH CELIAC DISEASE


    Posterboy

    Celiac.com 01/17/2017 - A diagnosis of pellagra will likely have many other disease presentations, not limited to acne, rosacea (dermatitis) skin rashes, depression, anxiety, dementia, etc., as well. Seventy-five or more years ago the symptoms of Pellagra were commonly diagnosed as separate diseases that were known to be of a common cause. Similarly celiac disease today is often referred to as the "tip of the iceberg," not only because of the large number of undiagnosed people, but also due to the vast range of symptoms and associated diseases and disorders that can be caused by untreated celiac disease. I assert that pellagra could be, in some cases, related to celiac disease, and might even cause it.


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    Today Pellagra has mainly been reserved for subgroups of people like alcoholics or disadvantaged groups like the homeless, who lack good protein sources in their diet to stave it off. Quoting Niki Frost from the Pellagra Disease Blog: "Since pellagra is such a rare disease today, few people recognize it based on their symptoms alone (any of the three D's: dementia, dermatitis, and diarrhea). Pellagra patients are consequently referred to specialists in fields that are ultimately unrelated to the underlying nutritional deficiency and metabolic nature of the disease." (1)

    Dr. Heaney, Professor of Medicine at Creighton University, actually echo this fact when he says "In the United States, at least, Pellagra is a disease of the past, fortunately, and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention." (2) Why is this? Because, as mentioned above, doctor's don't recognized it today unless they are a specialist, and even then, according to Nicki Frost: "specialists (are) in fields that are ultimately unrelated to the underlying nutritional deficiency and metabolic nature of the disease." (3) So the cycle repeats.

    Since these specialists might not consider people with celiac disease/Non-Celiac Gluten Sensitivity (NCGS) to be in a subgroup which is prone Pellagra, is it possible that some people are misdiagnosed? Skin conditions like acne, dermatitis, eczema, psoriasis, skin lesions, and mouth ulcers can be related to both Pellagra and celiac disease or NCGS. Some of the other signs of Pellagra, other than digestive distress, are dementia related symptoms such as depression, anxiety, brain fog, mental confusion, etc., which are also present in 40 percent of celiac patients. What if doctors haven't made the right diagnosis in some cases? Many people who might be misdiagnosed with celiac disease but who actually have Pellagra might not get better because they are not treating the right disease.

    Pellagra and its associated skin and GI problems are totally reversible with supplementation, which is one of the reasons that many foods are enriched with niacin. Glutenfree Works covers this topic well by noting a casual relationship, but not a causal relationship. They even note that a niacin deficiency itself can cause some of these symptoms. According to Glutenfree Works:

    "Intriguing animal research by Sandhur et. al. has shown that niacin deficiency itself sensitizes the intestinal mucosa of rats to gluten in wheat, barley, rye, oats and corn and induces susceptibility to gluten toxicity by means of cellular dysfunction. Human research needs to investigate this effect of niacin deficiency in human celiac disease." (4)

    But no one else seems to take note of this amazing fact. The research by Sandhur et. al. is 30+ years old, but is it possible that people are suffering from all kinds of GI problems, possibly even celiac disease, because they are ignorant of this fact?

    Around 15 years ago Prousky did follow up human research (5) that supports the idea that niacinamide can indeed treat different digestive problems. It was this initial research which I read 10+ years ago that lead me to the hypothesis that Pellagra today is might be misdiagnosed as celiac disease, because doctors are no longer able to recognize Pellagra in a clinical setting, having not seen it 75+ years.

    From Dr. Heaney's blog: "2014 marks the 100th anniversary of the war on pellagra, a war that lasted nearly 25 of those years before victory could finally be declared. You have not heard of the war on pellagra? The celebration is not on your calendar? You're not alone. Why did it take so long? Was the science so intractable, like the current "war" on cancer? No. It was politics and pigheadedness that were the obstacles." Dr. Heaney says: "Nutritional deficiency was not an accepted category of disease when Goldberger started work" on his cause/cure for Pellagra, and I must also mention that it is not looked at today in those diagnosed with celiac disease. (6)

    Let's look into this more if we can. Let's see what other expert's say about this. If we look at back issues of The International Journal of Celiac Disease we see a casual link that indicates a co-morbidity of Pellagra in celiac patients of 58%. (7) Note they the International Journal of Celiac Disease is not looking for a causal link but they only report casual association. In the article entitled "Two Exceptional Complications Revealing Celiac Pellagra" the author notes: "pellagra is essentially affecting tissues with a high rate of cell turnover, such as the digestive tract and the skin, and tissues with high energy needs, such as the brain". (8) If the symptoms are so similar, it might be easy to confuse one disease for the other.

    How is this possible? The International Journal of Celiac Disease muses on this point too. When discussing the "exceptional" and not well understood reasons why Pellagra might show up in a celiac diagnosis, they say "Little progress has been made in our knowledge of pellagra...since Goldberger discovered that nicotinamide was a preventive factor in 1926...(P)roof of this is that there have been no changes in treatment or diagnostic criteria in the last 90 years." The International Journal of Celiac Disease summarizes this case of "Exceptional complications revealing celiac disease and Pellagra illustrates...rare complication revealing celiac disease". (8)

    Since up to 58 percent of celiac patients might be co-morbid with Pellagra, could it be possible that Pellagra is the "parent disease," and the those diagnosed with celiac disease have symptoms derived from Pellagra? If we follow most normal paths for adoption it will take another 20 years (a generation) for the medical community to accept Pellagra as perhaps the proper diagnosis in some cases. So there is some evidence to suggest that medical science is, perhaps in many cases, identifying the wrong disease. If one is critically low in niacin, the 3 D's of Pellagra (Dementias, Dermatitis's, and Digestive Issues) show up.

    Take the "Niacin (Niacinamide) Challenge" and see if taking it three times a day for six months don't cause a healthy GI pattern, including a once per day bowel movement that sinks and healthy burping without bloating. Taking the niacinamide Challenge may put co-morbid cases of Pellagra, including its digestive symptoms, into remission, and provide relief for many who do not recover on a gluten-free diet alone. The number one mistake people make when taking niacinamide is they don't take it for long enough. It takes 4 to 6 months to overcome a serious deficiency of this vitamin, and for your mucus membranes (GI lining) to heal itself.

    Once you recover you can maintain your health, barring some future stress/trauma that depletes your reserves, at which time heartburn/GERD/IBS/diarrhea/constipation symptoms will return, and you will lose your ability to burp easily again. And the cycle repeats and the Pellagra symptoms come back with a vengeance.

    Read more at The Case of Mistaken Identity: How Pellagra now thought to be rare became known as Celiac Disease ? A White Paper by the Celiac Posterboy.

    References:

    1. https://pellagradisease.wordpress.com/ 
    2. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/
    3. https://pellagradisease.wordpress.com/
    4. http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/
    5. Prousky, Jonathan E. Is Vitamin B3 Dependency a Causal Factor in the Development of Hypochlorhydria and Achlorhydria? Journal of Orthomolecular Medicine, Vol. 16, No. 4, 4th quarter 2001, pp. 225-37. http://www.orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml
    6. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/
    7. International Journal of Celiac Disease. Celiac Disease: Intestinal, Heart and Skin Interconnections. 2015, 3(1), 28-30 doi:10.12691/ijcd-3-1-6 (http://pubs.sciepub.com/ijcd/3/1/6/)
    8. International Journal of Celiac Disease. Two Exceptional Complications Revealing Celiac Disease: Ischemic Cardiomyopathy and Pellagra. International Journal of Celiac Disease. 2015, 3(1), 31-32 doi:10.12691/ijcd-3-1-5. (http://pubs.sciepub.com/ijcd/3/1/5/)

    Image Caption: Homeless man. Image: CC-- Tony Waghorn
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    Guest Knitty Kitty

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    Hurrah! Wonderful informative article. Should be required reading in the Newbie section. Thanks!

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    Guest kris

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    Most cereals and bread are fortified with niacin. I feel it highly unlikely that pellagra is a misdiagnosis for celiac. Much more likely that celiac malabsorption causes contributes to the formation of pellagra like symptoms. This article mentions nothing about talking to your doctor and get tested for a deficiency before taking mega-doses of niacin or what a proper dose would be for a person by weight. Over supplementation of this vitamin can be dangerous and should not be done without consulting with an MD first. This is especially the case for children. If someone decides to take the mega dose advice please look up the side effects of doing so before trying this (in my opinion) and consult with your doctor.

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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
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    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
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    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com