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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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    DO WE REALLY NEED BIOPSIES TO DIAGNOSE CELIAC DISEASE?


    Jefferson Adams


    • Can celiac disease be accurately detected without a biopsy?


    Celiac.com 07/13/2017 - Until recently, duodenal biopsy was considered the gold standard for diagnosing celiac disease, but that is changing.


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    A number of studies have shown that celiac disease can be diagnosed using serological tests alone, but many clinicians have yet to embrace this approach.

    In both retrospective and prospective studies, one research team showed that certain IgA-tissue transglutaminase antibodies levels can predict celiac disease in adults 100% of the time.

    After making some adjustments to the analytical method for measuring the antibody, a team of researchers recently set out to to determine whether such serum tests can reliably diagnose celiac disease in large numbers adult patients without the need for small bowel biopsy.

    The research team included GKT Holmes, JM Forsyth, S Knowles, H Seddon, PG Hill, and AS Austin.

    They are variously associated with the Royal Derby Hospital, the Department of Pathology, and the Derby Digestive Diseases Centre at the Royal Derby Hospital in Derby, UK.

    For their study, the team conducted a retrospective analysis in an unselected series of 270 adult patients who underwent small bowel biopsies and the measurement of serum IgA-tissue transglutaminase antibody levels from 2009 to 2014.

    At an IgA-tissue transglutaminase antibody cut-off greater than 45 U/ml (>8×upper limit of normal+2SDs) the positive predictive value for celiac disease in this cohort was 100%; 40% of cases were above this cut-off.

    The team found that they could use IgA-tissue transglutaminase antibody levels to reliably diagnose celiac disease in a high proportion of these adult patients.

    This study adds to the growing body of evidence that supports the diagnosis of celiac disease without a mandatory small bowel biopsy.

    As a realist of these findings, the study team has changed the diagnostic guidelines for their center, and will now make celiac diagnosis based on cut-off levels of IgA-tissue transglutaminase.

    This is exciting news. For many, many years, the biopsy was considered the gold standard for diagnosing celiac disease.

    By eliminating biopsies in favor of IgA-tissue transglutaminase levels, diagnosing celiac disease could become much easier and even cheaper.

    Do you have celiac disease? Did you receive a biopsy for diagnosis? How do you feel about celiac diagnosis without biopsy? Share your thoughts below.

    Source:


    Image Caption: Can blood tests alone accurately diagnose celiac disease? Photo: CC--Garland Cannon
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    Guest Tracy Hintz

    Posted

    My daughter was diagnosed in 2006 by colonoscopy. She has the blood test in 2005 and after a negative result on her blood test and suffering another six months until a colonoscopy was finally done. The GI specialist didn't even need to wait for biopsies because of the damage, but of course the biopsies were positive as well. I'm dubious about relying on blood work alone, at least in children. I´d hate to be the patient or the family member or a patient suffering who was told it was negative based on blood alone. We were told because she was vomiting and had diarrhea daily that they suspect the blood test was negative because so little was being absorbed in her system.

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    Guest Clair C.

    Posted

    I was tested after a trip to Brazil pointed out to my doctor that I might be celiac. He did just the celiac test and I so conclusively "failed it" that he declared me celiac after 10 to 15 years of not knowing what was wrong with me. There is no question that I am celiac after so many symptoms and so many years of eating gluten free (about 9 years and counting).

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    Guest cgil7

    Posted

    I was also diagnosed by genetic testing. I did not know anything about celiac disease when I was young and having all kinds of stomach issues. I went gluten free because I thought maybe I had a sensitivity to wheat and felt so much better. I later found out about celiac disease and asked my doctor to test me for it and he refused, saying it was very rare and I had IBS which is common in women. I had genetic testing done many years later and all markers were positive, in fact the counselor I talked to said she had been in the field for over 30 years and had never seen anyone with positive markers end up NOT having celiac disease but my Dr. at the time said they would not diagnose me with celiac unless I went back on gluten for a month or so and then had a biopsy. I was not willing to do that because I had been so sick before on gluten that I could not work or do much of anything. It took over 15 years before I finally got properly diagnosed and found doctors that were educated and knowledgeable about the disease.

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    Guest Joe Hurley

    Posted

    My blood tests were all negative, but the biopsy showed damage to the small intestine. Does this mean I don't have celiac disease?

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    Guest Kristy

    Posted

    I had the biopsy. The blood work was "borderline" yet I already had serious blunting. My concern is that it might get missed in some cases.

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    Guest Allie

    Posted

    I was diagnosed by lab work. I have been gluten free since my diagnosis in 2011.

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    Guest Elisabeth

    Posted

    This would be great; I had a biopsy that didn't show celiac disease, because my physician had the test done after 3 months of gluten free diet! The advise was to skip the gluten free diet and come back for another biopsy after three months! After so many years with pain I just couldn't do that again. So now the physician doesn't believe me. But I am pain free!

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    Guest Cecelia Brothwell

    Posted

    I was not tested for celiac disease when I first went to a doctor - tested for a multitude of other things and all negative. Went 3 more years until seeking second opinion. Positive with endoscopy to confirm at which time 3 areas of metaphylasia (sp) were found. One year later on celiac diet, repeat scoping, all areas gone. Now having 3 year scoping as follow up. All pediatricians have this as part of grandchildren's family health history.

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    Guest Patricia

    Posted

    Excellent informative article. Am 75 and have had some scary episodes from anesthesia in the past. I will now no longer do the duodenal biopsy. Had unsymptomatic celiac diagnosed one year ago in a blood test.

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    I think that the biopsy is actually not as accurate as physicians would have us believe. In a lecture by Dr. Fasano I attended he admitted that celiac disease is "patchy" and the biopsy may not reach the affected area. If a blood test comes back positive the person has a problem with gluten regardless of the level of damage (Marsh score) and should not eat it.

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    Guest Mindy

    Posted

    12 years ago I had low bone density. Endocrinologist did one test. tTg. Normal was 1-19 mine was 181. Proved part of why my bone density was not good at age 50. I tried to eat well but gluten was in tiny amounts in many places. I didn't know I was celiac, but never ate sandwich or pizza instinctively. I refused the "gold standard" biopsy. I don't see a need for invasive tests when I can change behavior. I am gluten-free. I don't eat gluten-free junk either. I am much better. Still work as I was undiagnosed for so long and am allergic to other things due to leaky gut. I am healthier than most. Wonder if the 25% earlier death is for celiacs that comply. Thanks for your article. I sensed I was wise but people often ask about biopsy. I am now 62.

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    I was diagnosed on blood tests alone at age 51, 6 years ago. All of my markers were off the charts high. I had been having unusual blood work for years - high platelets, elevated liver enzymes, thyroid issues, etc. The blood work was so definitive, even after 2 weeks of no gluten, that by the time I saw the gastroenterologist a month later, he did not want to reintroduce gluten and made the diagnosis on blood work - I had the full celiac panel, all markers were high.

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    Guest Lindsey

    Posted

    I was just diagnosed with celiac with the blood test - my numbers were extremely high and the doctor gave me the option to do the biopsy. He said with as high as my numbers were it wasn't really necessary if I didn't want it. I have chosen not to get the biopsy done. rnrn

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    Guest Pam Newbury

    Posted

    I am surprised to hear two people in the comments say they were "diagnosed" using a genetic test. Genetic tests for celiac disease can, in some cases, exclude a diagnosis of celiac disease, but they cannot diagnose it. One third of the population have the genetic markers for celiac disease. Only a small percentage of those will develop celiac disease. Genetic testing must be followed up by other tests. I am concerned that people are being told that testing positive for the genetic markers for celiac disease is a "diagnosis". While I think that, in some cases, a strongly positive result on celiac disease blood tests can eliminate the need for biopsy to confirm, I think that when celiac disease is suspected and tests are negative or unclear, a biopsy should always be performed. I also think there is value in knowing how badly damaged the gut is and in seeing how much healing has been done in a follow-up biopsy at a later date.

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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
    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