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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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    ENDOSCOPY PATIENTS WARNED OF 'SUPER-BUG' EXPOSURE AT UCLA MEDICAL CENTER


    Jefferson Adams

    Celiac.com 03/02/2015 - Officials at UCLA Ronald Reagan Medical Center have warned 179 people that a fairly routine endoscopy procedure may have left them exposed to a drug-resistant 'super-bug' that infected seven patients, and may have contributed to two deaths. The possible exposures occurred at the UCLA Ronald Reagan Medical Center, between October and January, in patients who underwent a procedure in which a specialized endoscope is inserted down the throat to diagnose and treat pancreatic and bile duct diseases.


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    Photo: CC--Grammaticus BramlingtonOfficials said in an official statement that hospital staff had been sterilizing the scopes according to the manufacturer's standards, but was now using "a decontamination process that goes above and beyond manufacturer and national standards."

    Meanwhile, hospitals across the United States have reported exposures from the same type of medical equipment in recent years, and the U.S. Food and Drug Administration (FDA) has said it was working with other government agencies and manufacturers of the scopes to minimize risks to patients.

    The FDA says recent medical publications and adverse event reports associated multidrug-resistant bacterial infections in patients who have undergone ERCP with reprocessed duodenoscopes, "even when manufacturer reprocessing instructions are followed correctly."

    The multidrug-resistant bacterial infections include carbapenem-resistant Enterobacteriaceae (CRE) such as Klebsiella species and Escherichia coli.

    The FDA says that from January 2013 through December 2014, they received 75 medical device reports involving about 135 patients related to possible microbial transmission from reprocessed duodenoscopes. "It is possible that not all cases have been reported to the FDA," the agency says.

    Given the fact that celiac disease diagnosis and follow up care require the use of endoscopy, this news is particularly disturbing to those in the celiac community.

    Source:



    Image Caption: Photo: CC--Grammaticus Bramlington
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    Is this article legit??? This is not applicable to celiacs!!! It's not applicable to routine endoscopy procedures as far as I can tell. What are your sources?

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    Guest kareng

    Posted

    Most celiacs do not have this type of endoscopy. This type is used for checking bile ducts and pancreas.

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    Guest Laura

    Posted

    This does not apply to celiac screening. How irresponsible to be posting shock articles that make people shy away from getting needed medical care. This is a different procedure and different piece of equipment than is used for an endoscopy that would be used to assess ulcers, celiac, etc. This is only used fora procedure that deals with the pancreas, so it adds a fluoroscopy, it is called Endoscopic retrograde cholangiopancreatography (ERCP). Unless you are getting this procedure done, it is very unlikely your doctor would needlessly use this more complicated piece of equipment.

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    Guest admin

    Posted

    This does not apply to celiac screening. How irresponsible to be posting shock articles that make people shy away from getting needed medical care. This is a different procedure and different piece of equipment than is used for an endoscopy that would be used to assess ulcers, celiac, etc. This is only used fora procedure that deals with the pancreas, so it adds a fluoroscopy, it is called Endoscopic retrograde cholangiopancreatography (ERCP). Unless you are getting this procedure done, it is very unlikely your doctor would needlessly use this more complicated piece of equipment.

    The long process that most celiacs endure to get properly diagnosed lead many of them to get all sorts of unnecessary medical tests done--several different scopes were done on me--not just the one that diagnosed my celiac disease, so this article should be relevant to all people who may undergo such a procedure. Further, it is now breaking news that many states do not even have to report infections caused my their scopes--even when they know it. Six years ago 15 people died in FL from this: http://endoscopereprocessing.com/2015/02/bloomberg-business-superbug-scopes-in-ucla-case-linked-to-florida-deaths-years-ago/ but most people don't know due to that state's rules that protect the hospitals. It seems to me that any device that doctors and the FDA has determined to be "unsanitizable" should not be put in humans.

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    Guest admin

    Posted

    Most celiacs do not have this type of endoscopy. This type is used for checking bile ducts and pancreas.

    Yes, but most celiacs have tons of unrelated side tests, scopes and screening done because their doctors can't figure out their issue. The average time to diagnosis is still 7 years.

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    Guest Cheryl

    Posted

    ALL scopes are very difficult to properly clean. The rate for contaminated scopes is only slightly better for gastroscopes at 24 percent found contaminated. Compare that with 30 percent for duodenoscopes and the risks of serious infections is essentially equal for all upper GI procedures.

    Celiac diagnosis is just as dangerous. Simply because it has not happened does not mean it won't. Sticking our heads in the sand until someone is infected with a chronic infection or lifelong illness in addiction to celiac is not going to improve our risks.

    Here is the information posted by the Association for Professionals in Infections Control:

    “In an abstract to be presented at the 40th Annual Conference of the Association for Professionals in Infection Control and Epidemiology (APIC), researchers in the 3M Infection Prevention Division analyzed 275 flexible duodenoscopes, gastroscopes, and colonoscopes and found that 30 percent, 24 percent, and 3 percent respectively did not pass a cleanliness rating www.infectioncontroltoday.com/news/2013/06/3-out-of-20-scopes-harbor-bioburden-study-shows.aspx.

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    Guest Donnie

    Posted

    I refused to get the endoscopy to confirm my celiac diagnosis. A year before, our local hospital had to notify hundreds of patients that they were exposed to Aids, Hepatitis C and other deadly diseases, because they had endoscopy procedures done with improperly cleaned scopes. Many people did become ill because of it. I am so glad I passed on having the scope test. I can be totally gluten free without taking the added risk to my health from a dirty scope.

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    Guest katrina

    Posted

    Is this article legit??? This is not applicable to celiacs!!! It's not applicable to routine endoscopy procedures as far as I can tell. What are your sources?

    Tes this is legit. My friend works at UCLA, and there was also an outbreak at Cedars hospital.

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    Guest katrina

    Posted

    ALL scopes are very difficult to properly clean. The rate for contaminated scopes is only slightly better for gastroscopes at 24 percent found contaminated. Compare that with 30 percent for duodenoscopes and the risks of serious infections is essentially equal for all upper GI procedures.

    Celiac diagnosis is just as dangerous. Simply because it has not happened does not mean it won't. Sticking our heads in the sand until someone is infected with a chronic infection or lifelong illness in addiction to celiac is not going to improve our risks.

    Here is the information posted by the Association for Professionals in Infections Control:

    “In an abstract to be presented at the 40th Annual Conference of the Association for Professionals in Infection Control and Epidemiology (APIC), researchers in the 3M Infection Prevention Division analyzed 275 flexible duodenoscopes, gastroscopes, and colonoscopes and found that 30 percent, 24 percent, and 3 percent respectively did not pass a cleanliness rating www.infectioncontroltoday.com/news/2013/06/3-out-of-20-scopes-harbor-bioburden-study-shows.aspx.

    Thank you well said!

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    Sayer Ji
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    Destiny Stone
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    http://pediatrics.aappublications.org/cgi/content/abstract/125/3/e525


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    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
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    Source:
    cnbc.com

    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.
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    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
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    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)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    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