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Understanding Celiac Disease: Insights from Celiac.com's Poll #3
Scott Adams posted an article in Autumn 2024 Issue
Celiac.com 07/09/2024 - Celiac disease is a chronic autoimmune disorder that affects the small intestine when gluten is consumed. The results of a recent Celiac.com poll offer valuable insights into public understanding and misconceptions about this condition. Below, we explore each question, discuss the correct answers, and analyze the poll results. 1. Celiac Disease is Curable with Medication: True or False? Answer: False Results: 322 False, 3 True Celiac disease is not curable with medication. The only effective treatment is a strict lifelong gluten-free diet. Despite ongoing research, no medications can cure or fully manage celiac disease symptoms, making dietary vigilance essential for those affected. 2. What Type of Test is Commonly Used to Screen for Celiac Disease? Answer: A) Blood test Results: A) Blood test - 314 B ) MRI - 6 C) Urine test - 3 D) X-ray - 2 Blood tests are commonly used to screen for celiac disease, specifically tests that look for antibodies such as tissue transglutaminase antibodies (tTG-IgA). This method is preferred due to its non-invasive nature and accuracy in detecting potential cases, prompting further diagnostic procedures if positive. MRI: Only 6 people selected MRI, which is not used to diagnose celiac disease. MRI is more suited for imaging organs and tissues but does not detect the antibodies related to celiac disease. Urine test: Chosen by 3 participants, urine tests are not used for diagnosing celiac disease because they cannot detect the specific antibodies associated with the condition. X-ray: Selected by 2 people, X-rays are ineffective for diagnosing celiac disease since they do not reveal the presence of antibodies or damage to the intestinal villi. 3. Celiac Disease Can Lead to Infertility in Some Cases: True or False? Answer: True Results: 255 True, 70 False Celiac disease can indeed lead to infertility, particularly if it remains undiagnosed and untreated. The malabsorption of essential nutrients and the body's chronic inflammatory state can interfere with reproductive health, affecting both men and women. False: The 70 respondents who selected false may be unaware of the wide-ranging effects of untreated celiac disease, including reproductive health issues such as infertility and pregnancy complications. 4. Which of the Following is a Common Symptom of Celiac Disease? Answer: D) All of the above Results: A) Joint pain - 1 B ) Diarrhea - 57 C) Neuropathy - 0 D) All of the above - 267 Common symptoms of celiac disease include joint pain, diarrhea, and neuropathy, among others. The broad spectrum of symptoms reflects the systemic nature of the disease, affecting various organs and systems beyond the gastrointestinal tract. Joint pain: Only 1 person selected joint pain, indicating a lack of awareness that it can be a symptom of celiac disease. Diarrhea: Chosen by 57 respondents, diarrhea is indeed a common symptom, but it is important to recognize that celiac disease can present with multiple symptoms. Neuropathy: Surprisingly, no one selected neuropathy, though it is a known symptom of celiac disease, highlighting the need for better education on the condition's diverse manifestations. 5. Celiac Disease Can Be Triggered by Certain Viruses: True or False? Answer: True Results: True 193, False 132 Research suggests that certain viral infections may trigger the onset of celiac disease in genetically predisposed individuals. These infections can cause an immune response that leads to the development of the disease when gluten is present in the diet. False: The 132 respondents who selected false may not be aware of emerging research indicating that viral infections, such as rotavirus, can act as environmental triggers for celiac disease in those with a genetic predisposition. 6. Which of the Following Grains is Naturally Gluten-Free? Answer: D) Quinoa Results: A) Barley - 6 B ) Rye - 2 C) Spelt - 35 D) Quinoa - 282 Quinoa is naturally gluten-free, making it a safe and nutritious option for those with celiac disease. Other grains like barley, rye, and spelt contain gluten and must be avoided to prevent adverse reactions. Barley: 6 respondents incorrectly chose barley, which contains gluten and is not safe for those with celiac disease. Rye: Selected by 2 participants, rye is another gluten-containing grain that must be avoided. Spelt: Chosen by 35 people, spelt is an ancient wheat variety and contains gluten, making it unsuitable for those with celiac disease. 7. Celiac Disease Can Cause Damage to the Lining of the Small Intestine: True or False? Answer: True Results: 325 True, 0 False Celiac disease causes damage to the lining of the small intestine, specifically to the villi, the small, finger-like projections responsible for nutrient absorption. This damage can lead to a range of nutritional deficiencies and associated health issues. 8. Which of the Following is a Potential Complication of Untreated Celiac Disease? Answer: D) All of the above Results: A) Anemia - 43 B ) Liver disease - 9 C) Arthritis - 4 D) All of the above - 269 Untreated celiac disease can lead to several complications, including anemia, liver disease, and arthritis. These complications arise due to chronic inflammation and malabsorption of nutrients essential for various bodily functions. Anemia: Chosen by 43 respondents, anemia is indeed a complication, but it is not the only one. Liver disease: Selected by 9 participants, liver disease can occur, but it is important to recognize the broader spectrum of complications. Arthritis: Only 4 respondents selected arthritis, which can be a consequence of untreated celiac disease due to systemic inflammation. 9. Celiac Disease is More Common in Males than Females: True or False? Answer: False Results: 46 True, 279 False Celiac disease is actually more common in females than in males. Women are more likely to be diagnosed with the condition, possibly due to a combination of genetic, hormonal, and immune system factors. Epidemiological studies have shown that approximately 60-70% of diagnosed celiac disease cases occur in females, indicating a significant gender disparity in the prevalence of the disease. This means that for every 100 people diagnosed with celiac disease, about 60 to 70 of them are female. True: The 46 respondents who selected true might be misinformed, as epidemiological studies consistently show a higher prevalence of celiac disease in females. 10. What is the Recommended Treatment for Accidental Gluten Ingestion in Individuals with Celiac Disease? Answer: D) None, just wait it out Results: A) Antibiotics - 8 B ) Steroids - 7 C) Pain killers - 4 D) None, just wait it out - 306 There is no specific treatment for accidental gluten ingestion; the best approach is to wait it out. Symptoms should be managed with rest, hydration, and possibly over-the-counter medications to alleviate discomfort. Prevention remains the best strategy. Antibiotics: 8 respondents chose antibiotics, which are ineffective for treating gluten ingestion as it is not an infection. Steroids: Selected by 7 participants, steroids are not a standard treatment and are only used in severe cases under medical supervision. Pain killers: Chosen by 4 respondents, pain killers might alleviate discomfort but do not address the underlying issue caused by gluten ingestion. 11. Celiac Disease Can Lead to Stunted Growth in Children: True or False? Answer: True Results: 281 True, 44 False Celiac disease can lead to stunted growth in children due to malabsorption of essential nutrients necessary for growth and development. Early diagnosis and a strict gluten-free diet are crucial to preventing this complication. False: The 44 respondents who selected false may not be aware of the severe impact celiac disease can have on children's growth and development if left untreated. 12. Which of the Following is a Gluten-Containing Ingredient Often Found in Processed Foods? Answer: C) Soy sauce Results: A) Xanthan gum - 35 B ) Tapioca starch - 23 C) Soy sauce - 258 D) Quinoa flour - 9 Soy sauce often contains gluten, making it a common source of unintentional gluten exposure in processed foods. Gluten-free alternatives are available and should be used by individuals with celiac disease to avoid adverse reactions. Xanthan gum: Chosen by 35 respondents, xanthan gum is actually gluten-free and commonly used as a thickener in gluten-free products. Tapioca starch: Selected by 23 participants, tapioca starch is also gluten-free and used in gluten-free cooking and baking. Quinoa flour: 9 respondents chose quinoa flour, which is gluten-free and safe for those with celiac disease. 13. Eating in Restaurants is a Prime Source of Gluten Contamination, Even if They Mark Items "Gluten-Free" on Their Menus: True or False? Answer: True Results: 313 True, 12 False Eating in restaurants poses a significant risk of gluten contamination, even if items are marked "gluten-free." Cross-contamination in the kitchen and improper handling can lead to gluten exposure, highlighting the need for vigilance and clear communication with restaurant staff. False: The 12 respondents who selected false may not realize the high risk of cross-contamination in restaurant settings, even when items are labeled gluten-free. 14. What is the Name of the Small, Finger-Like Projections in the Small Intestine that Can Be Damaged in Celiac Disease? Answer: A) Villi Results: A) Villi - 252 B ) Cilia - 50 C) Alveoli - 11 D) Follicles - 12 The villi are the small, finger-like projections in the small intestine that are damaged in celiac disease. This damage impairs nutrient absorption and leads to a variety of gastrointestinal and systemic symptoms. 15. Celiac Disease is Diagnosed by a Gastroenterologist: True or False? Answer: True Results: 310 True, 15 False Celiac disease is typically diagnosed by a gastroenterologist, who may use a combination of blood tests, endoscopy, and biopsy to confirm the diagnosis and assess the extent of intestinal damage. Conclusion This poll highlights the importance of awareness and education about celiac disease. Understanding the correct answers and the reasoning behind them can help those affected manage their condition more effectively and avoid common pitfalls. Accurate knowledge is crucial in ensuring a better quality of life for individuals with celiac disease.-
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Unraveling the Truth: A Deep Dive into Celiac.com Poll Results
Scott Adams posted an article in Winter 2024 Issue
Celiac.com 11/25/2023 - Embarking on a journey to unravel the intricacies of celiac disease and gluten-free living, this article delves into the recent Celiac.com poll results. Beyond mere statistics, we aim to dissect the perceptions and misconceptions surrounding celiac disease and gluten-free diets. Each poll question serves as a gateway to a realm of understanding, providing not only correct answers but also a nuanced exploration of why some individuals may have veered off course. Join us as we navigate through the survey insights, demystify common myths, and foster a clearer, more informed perspective on celiac disease and the gluten-free lifestyle. The Gravity of Celiac Disease Poll Question: Celiac disease is not a serious condition. Correct Answer: False (98%) Celiac disease is indeed a serious autoimmune disorder. Individuals with celiac disease must adhere to a strict gluten-free diet to manage symptoms and prevent long-term health complications. The 2% who answered 'True' might lack a comprehensive understanding of the impact of untreated celiac disease on overall health. Untreated celiac disease can lead to a spectrum of health issues, ranging from malabsorption of vital nutrients to more severe complications such as osteoporosis, infertility, and an increased risk of certain cancers. The immune system's relentless attack on the small intestine's lining can result in long-term damage, making it imperative for individuals with celiac disease to adopt a strict gluten-free diet. The profound health risks associated with untreated celiac disease emphasize the necessity of heightened awareness, dispelling any notion that this condition is anything less than a serious health concern demanding vigilant management. Decoding Gluten-Free Diets Poll Question: A gluten-free diet is always healthy. Correct Answer: False (70%) The poll's findings indicating that 30% of respondents believe a gluten-free diet is always healthy shed light on a common misconception surrounding gluten and its alternatives. While a gluten-free diet is essential for those diagnosed with celiac disease or gluten sensitivity, assuming it universally equates to a healthier lifestyle is a misconception. Gluten-free products often contain higher levels of sugar, salt, and unhealthy fats to compensate for the altered taste and texture resulting from the removal of gluten. Additionally, individuals following a gluten-free diet may face challenges in obtaining essential nutrients like fiber, iron, and B vitamins, as many gluten-free substitutes lack the nutritional fortification found in their gluten-containing counterparts. It is crucial to approach a gluten-free diet with a well-informed perspective, acknowledging that its health benefits are contingent on making wise dietary choices rather than simply the absence of gluten. Navigating Gluten-Free Labels Poll Question: Foods labelled "gluten-free" often contain up to 19ppm of gluten, which is an unsafe level for people with celiac disease. Correct Answer: True (51%) This question, though tricky, sheds light on an important aspect of gluten-free labeling. While the vast majority of gluten-free products comply with the 20ppm standard, some may hover close to this limit. The 49% who answered 'False' might not be aware of the strict standards in place and the rigorous efforts by manufacturers to ensure the safety of their products. It's crucial to emphasize that the proximity to the threshold does not necessarily make the product unsafe. Manufacturers take immediate action if a product tests close to the limit, ensuring the safety of individuals with celiac disease. 20 parts per million (ppm) of gluten is considered safe for the majority of people with celiac disease, and foods labeled "gluten-free" should adhere to the standard of containing less than 20 ppm of gluten, making them generally safe for individuals with celiac disease. Food manufacturers take the detection of gluten in their "gluten-free" labeled products very seriously. If a product tests close to the 20 ppm threshold or exceeds it, manufacturers typically conduct a thorough investigation to identify the source of contamination. This is done to ensure that the product meets the required gluten-free standard and to prevent any potential harm to individuals with celiac disease, as well as to avoid an expensive product recall and potential lawsuits by those who might be injured. Manufacturers aim to maintain the integrity of their gluten-free labeling and often implement quality control measures to prevent cross-contamination during the production process. In the event of a potential issue, they may take corrective actions, such as modifying production processes or sourcing ingredients from different suppliers. The goal is to provide safe and accurately labeled products for individuals with celiac disease, and prompt action is taken to address any deviations from the established gluten-free standard. Conclusion: Empowering Through Education These poll results highlight the need for continued education and awareness about celiac disease and gluten-free living. By debunking myths and clarifying facts, we empower individuals to make informed decisions about their health. Remember, knowledge is key, and with the right information, we can foster a supportive and well-informed community for those living with celiac disease.-
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Celiac.com 11/18/2023 - Celiac disease is a complex autoimmune condition triggered by the consumption of gluten, a protein found in wheat, barley, and rye. As awareness of this condition grows, so does the need for accurate information. In a recent poll on Celiac.com, participants were asked various questions about celiac disease. This article aims to dissect and discuss the results of this poll, shedding light on the correct answers, common misconceptions, and the importance of accurate information. Worldwide Prevalence of Celiac Disease Poll Question: Worldwide, how many people have celiac disease? Around 0.01% - 0% Around 0.1% - 4% Around 1% - 28% Around 5% - 17% Around 10% - 51% Correct Answer: Around 1% Discussion: The correct answer is approximately 1% of the global population. Celiac disease is more common than many people realize, affecting about 1 in 100 individuals worldwide. Surprisingly, 51% of poll participants believed the prevalence to be around 10%, indicating a significant overestimation. This misconception highlights the importance of spreading accurate information to create a more informed and supportive environment for those with celiac disease. Diagnosis of Celiac Disease Poll Question: How is celiac disease typically diagnosed? Tarot cards - 0% Just by feeling better not eating gluten - 1% Blood antibody tests - 9% Endoscopy where biopsies are taken - 4% Blood antibody tests followed by an endoscopy where biopsies are taken - 86% Correct Answer: Blood antibody tests followed by an endoscopy where biopsies are taken. Discussion: Diagnosing celiac disease involves a combination of blood tests and an endoscopy with biopsies to confirm the presence of villous atrophy. Despite this clear diagnostic process, 86% of participants correctly identified the need for both blood tests and biopsies. In certain cases where tTg-IgA levels are 10x normal it may be possible to make such a diagnosis, possibly leading to 9% who believed that blood tests alone were sufficient, in general a more comprehensive diagnostic approach is typically necessary for an accurate diagnosis. Safety of Eating at Gluten-Free Restaurants Poll Question: Eating in a restaurant that has a gluten-free menu is always safe for someone with celiac disease. TRUE - 4% FALSE - 96% Correct Answer: FALSE Discussion: The vast majority of participants, 96%, correctly identified that eating in a restaurant with a gluten-free menu is not always safe for individuals with celiac disease. Cross-contamination is a significant concern, even in establishments offering gluten-free options. The 4% who chose "TRUE" may underestimate the strict measures needed to prevent cross-contact, emphasizing the need for continuous education on the challenges faced by those with celiac disease. Conclusion This poll provides valuable insights into the prevailing perceptions and misconceptions surrounding celiac disease. As awareness grows, it is crucial to ensure that information is accurate and accessible. Dispelling myths and providing correct information empowers individuals with celiac disease and fosters a more supportive and understanding community. Education is the key to creating a world where those with celiac disease can navigate their dietary needs with confidence and security.
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Interpretation of Celiac Disease Blood Test Results
Scott Adams posted an article in Diagnosis, Testing & Treatment
The following detailed explanation of serological tests for celiac disease was written by Tom Ryan, Technical Service Specialist, INOVA Diagnostics, Inc. There has been a lot of discussion about serological testing for celiac disease recently, specifically regarding tTG (tissue Transglutaminase) testing. I will try to answer some of the many questions that have appeared on this list about all of the tests. First, and this applies to any of the blood tests, you must currently be on a gluten containing diet for the tests to be accurate. Antibodies are produced by the immune system in response to substances that the body perceives as threatening. The immune response that your body produces is its response to being exposed to gluten in the diet and its subsequent effect on the intestinal mucosa. If there is no gluten in the diet, then there is no response that we can measure. A brief change in diet will not have a noticeable effect. If you have been gluten free for a week or so, it will not make any great difference. The response might be marginally less but the difference is insignificant because the body has not had time to respond to the change. Conversely, if you have been gluten free for a protracted period of time and decide to be tested, a brief challenge of a couple of weeks is not enough to elicit a response and get an accurate test. There are several steps that take place to generate an immune response and it takes time both for the positive reaction when gluten is present and to clear the antibodies when gluten is eliminated. There has been a great deal of discussion about how much and how long a challenge should be and there is no consensus. Talk with your Doctor. My personal feeling is that the minimum is 2 slices of bread per day for 6 weeks to get an accurate test but I would not try to second-guess the Doctor. There are basically four tests that can be performed to aid in diagnosing celiac disease. Notice that I say they will aid in diagnosing celiac disease. Immunology is fairly accurate but it is far from being an exact science. All of the lab tests, regardless of the type or source, are presented as aids to diagnosis. They should not be used alone as a basis for diagnosis but rather are intended to be considered in conjunction with the physical examination of the patient as well as the reported symptoms, etc. by a trained physician. There has been a great deal of confusion about what the tests are and I hope to alleviate some of the misunderstandings. There are many terms that we hear. tTG, IgA, IgG, ELISA, etc. What are all of these? Some contributors to the list make reference to the IgA or IgG test or to the ELISA test. These labels are incomplete for our purposes and could be referring to any number of different tests. We all have, within our bodies, a family of closely related although not identical proteins which are capable of acting as antibodies. These are collectively referred to as immunoglobulins. Five major types of immunoglobulins are normally present in the human adult. They are IgG, IgA, IgM, IgE and IgD. Each of these is a shorthand way of writing immunoglobulin gamma G (or A or M, etc.) and they each perform a different function in our systems. IgG is the principal immunoglobulin in human serum. It is important in providing immunity in a developing fetus because it will pass across the placental barrier. IgA is the principal immunoglobulin in secretions from respiratory and intestinal mucosa. IgE is a gamma globulin produced by cells lining the intestinal and respiratory tracts. It produces the antibodies associated with most hypersensitivity (allergic) responses. It is associated with asthma, hay fever, etc. IgM is a globulin formed in almost every immune response in the early part of the reaction. IgD is a rare protein present in normal sera in a tiny amount. These designations refer to the type of protein that is carrying the antibody in question. Both IgG and IgA subtypes of anti-gliadin antibody are produced, hence we refer to them as IgG gliadin or IgA gliadin. Collectively they are anti-gliadin antibodies. Anti-Gliadin Antibodies: Both IgA and IgG anti-gliadin antibodies (AGA) are detected in sera of patients with gluten sensitive enteropathy (celiac disease). IgG anti-gliadin antibodies are more sensitive but are less specific markers for disease compared with IgA class antibodies. IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur. On the other hand, the IgG anti-gliadin antibodies are 91% specific and have an 87% sensitivity. This means that they will show positive results more readily but there is not as strong a correlation with celiac disease. It is less specific. Patients with other conditions but not afflicted with celiac disease will occasionally show positive results. IgG anti-gliadin antibodies are detectable in approximately 21% of patients with other gastrointestinal disorders. This test might yield false positive results but is less likely to yield false negative results. A sensitive testing protocol includes testing for both IgA and IgG anti-gliadin antibodies since a significant portion of celiac patients (approx. 2-5%) are IgA deficient. This combined IgA and IgG anti-gliadin antibody assay has an overall sensitivity of 95% with a specificity of 90%. The type of test used to detect the anti-gliadin antibodies is called an ELISA. This is an acronym and it stands for Enzyme Linked Immuno-Sorbent Assay. ELISA is not a test in itself. It is a method of testing and it is a relatively simple test to perform. It involves putting a measured amount of diluted patient serum into the wells of a specially constructed and prepared plate and incubating it for a period of time with various chemicals. The end result is a color change, the intensity of which is dependent upon the concentration of anti-gliadin antibody (or other protein being measured) in the patient serum. The ability of this colored solution to absorb light at a particular wavelength can be measured on a laboratory instrument and mathematically compared with solutions that contain a known amount of anti-gliadin antibody to arrive at a number for the amount of antibody present. The sample can then be classified as negative, (0-20 units); weak positive, (21-30 units); or moderate to strong positive if greater than 30 units. The purpose of testing for anti-gliadin antibodies includes, in addition to diagnosis of gluten sensitive enteropathy, monitoring for compliance to a gluten free diet. IgA gliadin antibodies increase rapidly in response to gluten in the diet and decrease rapidly when gluten is absent from the diet. The IgA anti-gliadin antibodies can totally disappear in 2-6 months on a gluten free diet, so they are useful as a diet control. By contrast, IgG anti-gliadin antibodies need a long time, sometimes more than a year, to become negative. The reverse is also true. That is, a patient with celiac disease who has been on a gluten free diet and tests negative for IgA anti-gliadin antibodies, will show a rapid increase in antibody production when challenged by gluten in the diet. Approximately 90% of challenged patients will yield a positive IgA anti-gliadin result within 14-35 days after being challenged. The IgG antibodies are somewhat slower. Endomysial Antibodies: IgA class anti-endomysial antibodies (AEA) are very specific, occurring only in celiac disease and DH. These antibodies are found in approximately 80% of patients with DH and in essentially 100% of patients with active celiac disease. IgA endomysial antibodies are more sensitive and specific than gliadin antibodies for diagnosis of celiac disease. Antibody titers (dilutions) are found to parallel morphological changes in the jejunum and can also be used to reflect compliance with gluten-free diets. Titers decrease or become negative in patients on gluten free diets and reappear upon gluten challenge. The test for anti-endomysial antibodies is more subjective and more complicated for the lab to perform than the anti-gliadin assays. It involves serially diluting some of the patients serum, that is, diluting it by ½ then ¼, 1/8, 1/16, etc. and putting these dilutions on a glass slide that has some sort of tissue affixed to it. The slide is then processed with various solutions and examined under a fluorescent microscope to determine if any of that serum binds to any of the proteins in the tissue. If so, then that patient is confirmed as having antibodies to that particular protein. This method of testing is called an IFA or sometimes IIFA. It stands for Indirect Immuno-Fluorescent Assay. The selection of which tissue slide to use is determined by what specific protein, hence which antibody, you are specifically looking for. Endomysial antibodies react with the endomysium, which is a sheath of reticular fibrils that surround each muscle fiber. Therefore, to detect endomysial antibodies, you would want to use a tissue substrate that contains a lot of muscle tissue. The substrate used most often for this assay is distal sections of the esophagus. These are very thinly sliced and fixed to the slide. They contain muscle fibers and not much else so there is a lot of endomysium available to react with the anti-endomysial antibodies. Reading this test involves viewing the reacted slides with a fluorescent microscope to make the determination. This requires a highly skilled and trained eye and, of necessity, is somewhat subjective. You are looking for a green fluorescence in the endomysium covering the muscle fibers. The test is reported as the titer or final dilution in which the fluorescence can still clearly be seen. As you can imagine, this is very subjective. There are no standardized values and it is up to the judgment of the particular technician what the endpoint titer is. Recently, (1998) the endomysial antigen targeted by the anti-endomysial antibodies was identified as the protein cross-linking enzyme known as tissue transglutaminase (tTG). This has enabled the production of an antigen specific ELISA assay incorporating tTG as a reliable and objective alternative to the traditional and subjective Immunofluorescence based assays. In clinical trials, the correlation with the endomysial IFA assay has been shown to be close to 100%. This is a test that has been very well received in the professional community. It is an ELISA, like the anti-gliadin antibody test and, as such, is not subject to interpretation like the IFA. That is the greatest advantage to this new test! With this or any ELISA, the response is measured on an instrument that calculates the amount of light of a particular wavelength that is absorbed by the solution and prints out a numerical result. There is no chance of human error skewing the results because there is no judgment call involved. The ELISA plate, regardless of what you are testing for, is processed with at least three control sera (sometimes as many as eight) in addition to the unknown sample being tested. There is a negative serum and at least two positive sera containing different levels of the antibody being tested. There are specific requirements for the absorption levels of these three controls. That is, each of them has a minimum or maximum (or both) number that must be seen by the instrument in order for it to be a valid test. If there is any variance from these expected numbers, it is an indication that something went wrong and the test results are discarded and the test repeated. There is therefore no way the technician could report inaccurate results, (assuming they diluted the sample correctly). Either the test was valid, and you can rely upon the accuracy of the result, or the test is invalid, and the entire result discarded. If any error was made during the processing of the ELISA plate, it would result in the control sera numbers being out of range and the entire test result would be thrown out. In summary, the tTG ELISA is measuring the same thing that the endomysial IFA is measuring but with a method that is more sensitive and specific and not subject to interpretation. IgA class Reticulin antibodies are found only in Celiac disease and dermatitis herpetiformis. These antibodies are found in approximately 60% of celiac disease patients and 25% of DH patients. This test is falling into disuse because of the limited utility and the availability of better tests. It is an IFA performed on a tissue substrate with all the attendant problems that go along with it. The development of all of these serum assays has tremendously simplified the diagnosis of celiac disease and improved the accuracy as well. The original criteria for diagnosis according to the European Society for Pediatric Gastroenterology and Nutrition, (ESPGAN), involved a year of arduous studies with: An initial positive gut biopsy; 6 months on a gluten free diet; A second, negative gut biopsy; A gluten challenge for 6 months and; A third, positive gut biopsy. The revised ESPGAN criteria call for positive results in two of the serological tests confirmed by a single positive biopsy. In practice, many gastroenterologists are utilizing the serologies in conjunction with a controlled diet and the clinical presentation to form a basis for diagnosis without the need for the invasive procedure. Through the auspices of the Celiac Disease Foundation and others, a professional symposium and workshop was organized earlier this year in Marina Del Rey, California with participants from Europe as well as the U.S. to establish standards for reporting test results. This should improve testing and diagnosis even more. At the conclusion of this conference a Celiac Disease Standardization Committee was formed to investigate and make recommendations on a standardized method of reporting results.- 88 comments
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I have autoimmune disorders and was tested for gluten sensitivity. No symptoms. But Dr. Came back and said I have Celiac disease. Family always playing Drs.. Said the tests show I am moderately positive. So don't worry. And well I don't understand test results??? Anti Gliadin Ab, IgA. 0-19 units >150^ Tissue Transglutaminase. 0- 3 U/mL. 18^ Can someone help me understand. So I can explain this to my family. Thank you Hanna246
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Avoid Gluten with Elevated Antibodies but No Celiac Disease?
Dr. Tom O'Bryan posted an article in Winter 2008 Issue
Celiac.com 01/09/2021 - Ever stand on a school playground when a very loud siren would go off and feel like it was rattling your brain because it was so loud? If not from the local school ground, perhaps that siren was at the fire station, or other public building in your neighborhood? For the last 40 to 50 years, many of us remember hearing an ‘air raid siren' go off. In our area, it was on the first Tuesday of the month at 1:00PM. Air raid drills were a ‘warning system' to let us know that we had to take cover. From the days of the attack on Pearl Harbor through the dawning of the Nuclear Age, the air raid siren was designed to give us all a chance to ‘take cover' to get ourselves and our families to safety. Well as it turns out, our bodies have a similar early warning system. The National Institutes of Health tells us that Auto-Immune Diseases (the immune system attacking our own body tissue) collectively affect more than 24 million people per year in the U.S.(1) To put this in perspective, Cancer affects nearly 9 million people per year and Cardiovascular Disease affects close to 22 million people. And we know that only about 1/3rd of the people with an Auto-immune Disease are diagnosed.(2) That means about 72 million people are suffering with a self-destruction process (the immune system attacking its own body tissue). That puts Auto-Immune Diseases at the top of the list of the most common diseases in America today. But it's not screened for. To most of us, autoimmune diseases are unknown. Our medical system waits until the signs and symptoms are severe enough with organ failure and irreversible damage before we identify it. It's not screened for, it's looked at as a ‘last-resort' type of diagnosis. In general, autoimmune disorders can be classified as either organ specific or non-organ specific. In organ-specific autoimmune diseases, antibodies are specifically directed against targets localized in a particular organ and are often detected in the blood. Examples of organ-specific autoimmunity include Hashimoto's Thyroiditis (thyroid tissue), Type I Diabetes (pancreas tissue), Multiple Sclerosis (brain and nerve tissue), and Myasthenia Gravis (muscle tissue). In contrast, the non-organ-specific autoimmune disorders are characterized by the presence of antibodies directed against multiple targets (not specific to a particular organ). This results in the involvement of several organs or endocrine glands and is often characterized by the presence of specific circulating antibodies. Non-organ-specific autoimmunity includes diseases such as Systemic Lupus Erythematosus (SLE), Rheumatoid Arthritis (RA), and Scleroderma.(9) A growing number of studies have identified that the body makes these antibodies directed against itself—otherwise known as auto-antibodies—years, and sometimes for a decade before a diagnosis is made. The antibodies damage tissue slowly and steadily until finally people begin showing symptoms, and eventually receive a diagnosis. In Systemic Lupus, for example, research shows that the progression of auto-antibodies for Systemic Lupus Erythematosous (S.L.E.) begin to present five years before a diagnosis is typically made. The immune system began an ‘early-warning system' (by producing auto-antibodies), and was starting to say "there's a problem here". At this initial point, the patients did not have symptoms severe enough that warranted seeing their doctor. Unfortunately, in the vast majority of cases, no one is monitoring this early warning system. And so the body has to speak a little louder (more and different antibodies begin being produced)—no one is listening. And then a little louder—no one is listening. This continues for years until the body has to begin screaming. And how does the body scream? Pain. Have you ever stood under the telephone pole on the school playground when that Tuesday 1:00 PM siren went off? It rattles your brain. That's what is happening in the body when there eventually is enough damage that a diagnosis of an autoimmune disease becomes obvious-it can't be ignored. Researchers are telling us that autoimmunity appears to be a warning system that has gone beyond ‘early warning' to ‘take cover'. It takes years from the first identification of antibody presence to the point of ‘clinical onset'—when the symptoms are obvious that something is wrong, and a diagnosis is made. The levels of up to seven different antibodies may continue to rise for five years or more before the diagnosis. If patients were armed with such information, they could start fighting the ailment years before the threshold of damage has been passed and a diagnosis is evident, thereby preventing or delaying symptoms. One just has to look for the evidence. Arguably, the most common auto-immune disease is also the only one where the ‘cure' is known and uncontested. For some, gluten causes an ‘alarm reaction' in the immune system with a ‘call out the troops' type of attack response. (upregulating macrophage pro-inflammatory gene expression and cytokine production).(5,6) When this allergy to gluten (found in wheat, rye, barley and spelt) stimulates the production of auto-antibodies to the intestinal tissue (anti-transglutaminase or anti-endomysium antibodies), Celiac Disease is the diagnosis. And this auto-immune disease is readily put into remission and disappears with a life-long avoidance of gluten in any form.(4) Are there early warning signs of Celiac Disease? Yes, there are. We know that Celiac Disease-associated antibodies can be identified up to 5.2 years before a diagnosis of Celiac Disease can be made. (17) Numerous pain syndromes and auto-immune diseases have been associated with an ‘alarm response' to gluten. From peripheral neuropathies (numbness and tingling in the arms and legs) to crippling migraines and ataxia, from acute myocarditis (inflamed heart) to chronic pancreatitis, from vitiligo (loss of pigment-white spots-in the skin) to Primary Biliary Cirrhosis (Gall Bladder problems), from Multiple Sclerosis to Rheumatoid Arthritis, from Attention Deficit Hyperactivity Disorder (ADHD) to Epilepsy, in sensitive individuals, gluten may initiate this auto-immune response.(5,14) So which organ is vulnerable to this auto-immune attack, this calling out of the troops? The target tissue seems to be determined by one's genetics (the blueprint you were born with) and all of the mitigating factors (accumulated exposures we've had in our lives such as toxic chemical accumulation, repeated use of antibiotics or other drugs contributing to intestinal permeability, heavy metal toxicity, excess stress hormone production, poor food choices…).(7) This response may affect tissue throughout the body and has been identified with brain and peripheral tissue(8), liver epithelial cells, pancreatic beta-cells(8), thyroid tissue (9), bone cells(10), skin tissue(11), skeletal muscle(12), myocardium(13), and the brain and nervous system. And it does not require the production of auto-antibodies to the intestines-that is, gluten intolerance can occur and be associated with other autoimmune diseases without the diagnosis of Celiac Disease (14). As an example, 57% of patients with neurological dysfunction of unknown cause have elevated antibodies to gliadin (a protein in wheat). Only 35% of this group also have evidence of intestinal damage (Celiac Disease). The remaining 65% have gluten sensitivity and elevated antibodies to the brain (cerebellum) or the nerves in the arms and legs, a situation analogous to that of the skin in Dermatitis Herpetiformis.(14) It appears that wheat can directly stimulate an auto-immune attack on the brain and nervous system in sensitive individuals without the diagnosis of Celiac Disease. Elevated antibodies to gliadin and gluten (the protein in wheat) are the immune systems way of saying "this food is not good for me". Many researchers take the position that if there are elevated antibodies to wheat, but there is no evidence of Celiac Disease, there is no evidence of value to avoiding wheat. This position is historic and is in the process of changing. The idea that until the sirens are screaming, it's ok to eat wheat, even if the immune system is saying "this is not good for me", is a position that more and more doctors are realizing is causing unnecessary suffering. Many doctors and health care practitioners believe that even in the absence of indicators of outright Celiac Disease-that is with normal transglutaminase or endomysial antibodies, or a normal biopsy, we are best served by heeding the message our body is giving us, and avoiding these foods. The concern is that if we ignore the actions of our immune system (elevated antibodies to wheat), the auto-immune process of the body (attacking its own tissue), may years down the road leave us standing under that telephone pole with the siren going off rattling our brains, or thyroid, or pancreas, or heart… Dr. Thomas O'Bryan is a graduate of the University of Michigan and the National College of Chiropractic. He is a Diplomate of the National Board of Chiropractic Examiners, a Diplomate of the Clinical Nutrition Board of the American Chiropractic Association, and a Certified Clinical Nutritionist with the International and American Association of Clinical Nutritionists. He is a Certified Applied Kinesiologist. He is a Certified Practitioner in Functional Biomechanics from the Motion Palpation Institute. He is a member of the Institute of Functional Medicine, the International and American Association of Clinical Nutritionists, the American Chiropractic Association, the International Academy of Preventive Medicine and numerous other professional organizations. References: 1. National Institutes of Health. Autoimmune Diseases Coordinating Committee. Autoimmune Diseases Research Plan. Accessed 1/18/07. 2. Bland, J, Understanding The Origins and Applying Advanced Nutritional Strategies For Autoimmune Diseases. March 2006. 3. Notkins, A, Predictors of Disease, Scientific American, March 2007, 72-78. 4. Murray, J, The Widening Spectrum of Celiac Disease. Am J Clin Nutr 1999;69:354–65. 5. Betterle C., Update on autoimmune polyendocrine syndromes (APS), ACTA BIOMEDICA 2003; 74;9-33. 6. Zanoni,G, In Celiac Disease, a Subset of Antibodies against Transglutaminase Binds Toll-Like Receptor 4 and induces Activation of Monocytes, PLoS Med. 2006 Sep;3(9):e358. 7. Kumar,V,Celiac Disease-Associated Autoimmune Endocrinopathies, Clinical and Diagnostic Labortory Immunology,July 2001, p. 678–685. 8. Alaedini,A, Immune Cross-Reactivity in Celiac Disease: Anti-Gliadin Antibodies bind to Neuronal Synapsin 1,J Immunology,2007,178:6590-6595. 9. Freeman HJ. Hepatobiliary and pancreatic disorders in celiac disease. World J Gastroenterol 2006; 12(10): 1503-1508. 10. Moreno, M,The IL-1 gene family and bone involvement in celiac disease, Immunogenetics (2005) 57: 618–620 . 11. Abenavoli L, Cutaneous manifestations in celiac disease. World J Gastroenterol 2006;12(6): 843-852. 12. Kozanoglu, E, Proximal myopathy as an unusual presenting feature of celiac disease, Clin Rheumatol (2005) 24: 76–78. 13. Frustaci,A, Celiac Disease Associated with Autoimmune myocarditis, Circulation, 2002;105:2611-2618. 14. Hadjivassiliou, M, Gluten Sensitivity as a Neurological Illness. J Neurol Neurosurg Psychiatry, 2002;72:560-563. 15. Sategna-Guidetti C., Prevalence of Thyroid Disorders in Untreated Adult Celiac Disease Patients and Effect of Gluten Withdrawal: An Italian Multicenter Study, AJG—Vol. 96, No. 3, 2001. 16. Oderta G., Thyroid Autoimmunity in Childhood Coeliac Disease, . J Paediatr Gastroenterol Nutr, 2002 Nov;35(5):704-5. 17. Salmi,T., Immunoglobulin A autoantibodies against transglutaminase 2 in the small intestinal mucosa predict forthcoming coeliac disease Aliment Pharmacol Ther 24, 541–552- 3 comments
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Why Do Celiac Blood Tests Take So Long?
Jefferson Adams posted an article in Diagnosis, Testing & Treatment
Celiac.com 01/11/2023 - We get a lot of questions from celiac community members wondering about certain aspects of celiac disease. We especially get a lot of questions about celiac screening, including blood tests. One question we're seen a lot recently is: Why do celiac blood tests take so long? The short answer is that celiac disease blood tests, while not instantaneous, usually provide results within days or weeks. However, getting a doctor to order the blood tests can take time, depending on a few different parts of the celiac disease testing and diagnosis process. How Long Does it Usually Take to Get Diagnosed with Celiac Disease? Once doctors start looking for celiac disease, it doesn't usually take them very long to rule it in or out. In theory, a diagnosis of celiac disease is fairly straightforward. The best case would be you notice symptoms, go see a doctor, receive a quick celiac disease blood antibody panel (you need to be eating 2 slices of wheat bread's worth of gluten daily for 6-8 weeks beforehand), test positive for celiac antibodies, then undergo an endoscopy (biopsy samples will be taken - you need to be eating 2 slices of wheat bread's worth of gluten daily for at least 2 weeks beforehand) and get a confirmation. The whole process should only take a few weeks, or maybe a few months. Celiac Disease Blood Tests are Quick, but Diagnosis Can Take Years The reality is often different. While tests are quick once ordered, the reality of celiac diagnosis is often years of confusing, non-classical symptoms like fatigue, osteoporosis, and anemia, that can lead to years of doctors diagnosing other conditions, like IBS, allergies, canker sores, lactose intolerance, to name a few. Six to Ten Years for "Average" Celiac Diagnosis When people ask why celiac blood tests take so long, they're often asking why the diagnosis takes so long. Both Daniel Leffler, MD, MS, at The Celiac Center at Beth Israel Deaconness Medical Center, and the Celiac Disease Foundation say that patients face "an average delay of 6-10 years for an accurate celiac disease diagnosis." So six to ten years is one answer, it's the answer for many people. But it's not the complete answer, and it doesn't have to be the answer for everyone. Diagnosis in Weeks After Celiac Blood Screening In Italy, where celiac disease is common, all children are screened by age 6. And Italians of any age are tested for the disease as soon as they show symptoms. As a result of this vigilance, the time between when symptoms begin and the disease is diagnosed is usually only 2 to 3 weeks. How Long Does it Usually Take to Get Referred for Celiac Disease Blood Screening Tests? Those years of chasing the wrong diagnosis can mean that it can often take years for celiac disease sufferers to get referred for celiac screening. As noted, once doctors start looking for celiac disease, it doesn't usually take them very long. They usually order blood screens quickly, and then a confirmation biopsy if the screens are positive. Results of Celiac Disease Screening Tests Usually Arrive Quickly Once doctors order blood screens for celiac disease, it usually takes a matter of days of weeks for the results to come back. There's been some work to improve that by developing rapid finger prick celiac tests for children, but the results have been disappointing. So, even at a few days to weeks, it's not really the celiac blood tests that take a long time, it's the time that it might take for someone to actually get screened for celiac disease that can be long, depending on a combination of vigilance and testing practices. It can take years, but it can also take weeks or months. If you think you or a loved one may have celiac disease, do your best to note your symptoms, and to get screened by a physician. It's true that screening won't catch all cases, but it will catch most. The quicker the journey starts, the sooner an answer can be found. If you suspect celiac disease but your doctor won't order the blood panel for it, you can also order a blood screening kit via mail order for under $100. Read more on Celiac Disease Blood Antibody Tests and What You Need to Know about Celiac Disease Pre-Diagnosis and Testing.-
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Hi all, a few months back my hubs was going through classic signs of hyperthyroidism and finally got a diagnosis of Graves Disease, which is an autoimmune disease. I bought him a mail order lab test for celiac because I know autoimmune issues like to come in pairs. Here are his results: tTG IgA – 1.7 U/mL – normal tTG IgG – 3.3 U/mL – normal DGP IgA – 28.3 U/mL – Elevated (threshold 14.7) DGP IgG – 6 U/mL – normal From what I've read, the DPG IgA is 100% specific to celiac as it is an autoimmune response to only gliadin? We're getting him set up with a GI, but in the mean time, we're very confused. He also has pretty significant and frequent gas, and what I thought was a cluster of acne on his lower back where his kidney is that has been consistently there for months, though it's a bit cleared up now. I'm thinking this is actually from gluten and isn't actually acne. Now my question is, could this be celiac or could this be due to his Graves? I know about the molecular mimicry with gluten and thyroid hormones so I'm wondering if this elevated result isn't celiac but due to his graves. I know either way we will need to clear the gluten out of the house... Does anyone have any info they can share?
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Hello there all! I am new to the forum. I am so frustrated. First, I am already on a naturally gluten-free diet for Interstitial Cystitis. Anything wheat ticks off my entire system. Having major bowel issues the last 5 + weeks and for years really and pain in my gut for a while I was referred to GI. So they did every test in the book it seems, but me being completely Celiac unaware I didn’t know to press on certain aspects… for example many tests say results can be wrong on gluten-free diet … mind you I am not complaining if I am not celiac, etc … what I am saying is I feel like my doctor dispute me telling him I was on gluten-free diet he didn’t pick up on that and ran all these tests which are highly inaccurate in many ways if he is really testing for celiac. He told me … AND I QUOTE: ‘well, there is always hidden gluten… the tests are fine’ … um, I cook all my own food, I eat eggs, veggies, fruit, whole protein, herbs, spices… I have food allergies, too so I’m super limited. I can’t eat dressings or acidic foods, sauces, etc … unless I know what’s in them because I make them. anyways, I feel defeated that I am paying all this money for testing, I’m feeling like crap, and results with no gluten challenge there are faulty. mind you, me eating wheat products for two weeks with my bladder will be hell on wheels, but it leaves the question, is that really my bladder or is it my gut? I just want accurate tests… my Calprotectin came back <5 mcg … I should do cartwheels but it’s now leaving me with so many questions. I mean my tests should having me do flips cheering but I still feel defeated. has anyone else here experienced something similar? How did you deal with the doctor to get the testing redone?
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Hi! So I went to a GI doctor due to having terrible digestive issues, bloating, and acid reflux. I got a celiac blood panel test done and only one part came back positive, the Deamidated Gliadin Abs, IgG. my doctor then told me that an endoscopy needs to be performed next so i got one done. (Both blood test and endoscopy were performed while i was eating gluten) The biopsy results were “ increased intraepithelial lymphocytes with normal villous structure”. I met with my doctor and she stated with the blood results combined with the biopsy results that it was celiac disease. she told me to go gluten-free and come back in two months to get another blood test. so I went gluten free and it’s been one month since, and I have seen a big difference in symptoms, with me almost having no digestive issues now. i’m just confused because I’m trying to understand the results more and I looked stuff up and I’m reading stuff about latent Celiac, only gluten intolerant, etc. i’m just questioning it because I have no intestinal damage, but I do know that not every part of the intestines can be biopsied to see. and the only one positive part blood test is confusing to me, because some sources say only one antibody needs to be positive and some don’t. I don’t want to be diagnosed celiac if I don’t have it, but on the other hand I do want to be diagnosed if I do have it because I don’t want to make it worse if i don’t do gluten free. obviously I trust my doctor and she has been really great at listening to me, and i’m going to meet with her soon to ask for clarification. I’m not asking for a diagnosis, but I’m just trying to see if anybody else has had the same experience or results? Or if anybody can help explain the results more? I know I’m probably overthinking it😅
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Tests: (1) TISSUE TRANSGLUTAMINASE ANTIBODY, IGG,IGA (11073) TISSUE TRANSGLUTAMINASE AB, IGG <1.0 U/mL TISSUE TRANSGLUTAMINASE AB, IGA <1.0 U/mL Tests: (2) IMMUNOGLOBULIN A (539) IMMUNOGLOBULIN A 281 mg/dL Tests: (3) ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER (15064) ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER NEGATIVE NEGATIVE I understand it’s a negative test and it’s not diagnostic with just this test alone but I was wondering if anyone could give me any insight into the numbers and what they mean? I have had all of the symptoms of celiac for several years now including DH.
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Celiac.com 06/26/2007 - The results of a study recently published in the online science journal Nature Genetics have revealed a previously unknown genetic risk factor for celiac disease. An international team of researchers set out to study the genetic causes of intestinal inflammatory disorders. When the study began, it was well known that individuals with celiac disease have specific tissue types that identify wheat proteins. Why healthy individuals with the same tissue type failed to develop celiac symptoms or celiac disease remained unknown, and was a key question the team set out to answer. The team was led David van Heel, Professor of Gastrointestinal Genetics at Queen Mary, University of London. The Human Genome Project and the Hap Map Project played key support roles in the study. The results show that a protective DNA sequence in a specific gene segment, generally found in healthy individuals are missing in people with celiac disease. The research team evaluated genome data of 778 individuals with celiac disease and 1,422 controls non-celiacs within the British, Irish and Dutch populations. Key DNA Sequence Missing in Celiacs Researchers discovered that, compared to people with celiac disease, healthy people more commonly have a DNA sequence in the interleukin-2 and interleukin-21 gene region that protects against celiac disease. Interleukin-2 and interleukin-21 are cytokine proteins that are secreted by white blood cells, and which control inflammation. In people with celiac disease, the protective DNA sequence most likely leads to lesser amounts of these cytokines being produced, which weakens the defense against intestinal inflammation. Breakthrough in Better Understanding Risk Factors for Development of Celiac Disease About 1 in 133 people develop the disease, but, so far, predicting those at risk to develop the disease has been haphazard at best. Present methods of genetic testing can only narrow down the search to about 30% of the general population. These results give doctors a means to discover what further genetic risk factors leave people vulnerable to developing celiac disease. Queen Mary, University of London Press Release - Public release date: 10-Jun-2007 health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.
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Celiac.com 07/19/2021 - Many people with celiac disease and non-celiac gluten sensitivity claim to suffer from gluten-induced neuro-cognitive impairment (GINI), often referred to as “celiac fog,” "gluten fog,"or “brain fog,” but there have been no good studies, and so there is very little data about the rates and symptoms associated with GINI. A team of researchers recently set out to to understand the neuro-cognitive symptoms associated with gluten exposure in individuals with self-reported celiac disease and non-celiac gluten sensitivity (NCGS). For the study the team had 1,143 with people with celiac disease and 253 with NCGS participate in 9-question online survey. The survey used both forced choice and free-response to get a description of neuro-cognitive symptoms the participants experienced after gluten ingestion. The team coded free-response answers based on the Health-Related Quality of Life Instrument. Nearly nine out of 10 celiacs, and 95% of NCGS sufferers reported symptoms of GINI. In both groups, the most common words used by respondents to describe the symptoms were "difficulty concentrating," "forgetfulness," and "grogginess." Both groups shared similar timing of symptoms, including symptom onset and peak. The free responses for both groups showed that respondents most commonly referred to cognitive, physical, psychological, and overall impact on quality of life. This survey indicates that GINI is common and may be severe in both individuals with celiac disease and NCGS. The team speculates that gluten-related cognitive and physical impairment may be similar to that seen in other autoimmune conditions, such as lupus. The researchers encourage clinicians to include assessment for GINI symptoms in assessments for all celiac disease and NCGS patients. They also call for additional research which includes the development of a patient-reported outcome measure that notes the patients' perceived neurocognitive effects of gluten exposure. Read more in the Journal of Clinical Gastroenterology: May 28, 2021 This study was funded in full by Beyond Celiac. Notes: J.B.E.G.: has served as an unpaid consultant for Beyond Celiac and Takeda Pharmaceuticals and is an employee of Northeastern University. B.A.: is an employee of Northeastern University. K.N.V.: is an employee of Ultragenyx Pharmaceuticals Inc. and owns stocks and shares in Ultragenyx Pharmaceuticals Inc. J.O.F.: is an employee of Cambridge Health Alliance. K.S: is an employee of Johnson and Johnson and owns stocks and shares in Johnson and Johnson. K.A.: is an employee of Beyond Celiac. A.E.: has served as a speaker for the American Academy of Family Physicians and Pri-Med, served as Chair of the Board of Directors for Beyond Celiac and is an employee of EBSCO Inc. (publisher of Dynamed) and Reliant Medical Group. A.B.: has served as a speaker for Takeda Pharmaceutical Company, was an advisory board member for AHRQ, is an employee of Beyond Celiac and owns stocks and shares in Takeda Pharmaceutical Company, Amgen, Pfizer and Merck and Co. D.A.L.: has served as an advisory board member for Beyond Celiac, is an employee of Takeda Pharmaceuticals and owns stocks and shares in Takeda Pharmaceuticals. K.Y. declares that there is nothing to disclose. The research team included Jessica B. Edwards George, PhD; Babatunde Aideyan, MA; Kayla Yates, BS; Kristin N. Voorhees, MA; Jennifer O’Flynn, PhD; Kristen Sweet, PhD; Kate Avery, MPH; Alan Ehrlich MD; Alice Bast BS; and Daniel A. Leffler MD. They are variously affiliated with the Department of Applied Psychology, Bouvé College of Health Sciences, Northeastern University, Boston, MA; Beyond Celiac, Ambler, PA; the Department of Family Medicine and Community Health, University of Massachusetts Medical School, Worcester; Takeda, Cambridge; and the Celiac Center, Division of Gastroenterology, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA.
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I received these results been am unsure what they mean. Are these normal for a person with celiac?
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Hi! I recently did blood testing for celiac disease for the first time, and just received my results. What do these results indicate? My follow up appointment with my doctor isn’t for a month but I wanted to understand what my results are. any help in interrupting these would be much appreciated!
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I recently have gone to the doctor to find out whats been going on with my stomach and i got my results but havent gone back for personal reasons and Im trying to figure out what my results mean. any help would be kindly appreciated thank you
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Celiac.com 12/08/2020 - Are you confused about genetic testing for celiac disease? Do you want to know what tests you should request and which laboratory to use? Have you already had celiac DQ genetic testing but are not sure what the results mean or what your risk is of developing celiac disease or gluten sensitivity? These are the questions I will answer in the next few pages. What is HLA DQ celiac genetic testing? To understand celiac DQ genetics and the risk estimates you must also understand how the DQ types are determined and some basic terminology. Each of us has 46 chromosomes, 23 pairs received from our parents. We all have two copies of chromosome 6, one from each parent. Homozygous is when a person has two copies of the same gene, one from each parent. Our white blood cells (leukocytes) have proteins called human leukocyte antigens or HLA proteins that are inherited from our parents. The genetic code that determines our HLA patterns resides on chromosome 6. We all have two DQ patterns, one from each of parents, such that we are all DQx/DQx, where x is a number between 1 and 9. I am DQ2/DQ7 and my wife is DQ2/DQ5. We are both therefore heterozygous for DQ2. That is, we have only one copy of DQ2. Scott Adams, the founder of celiac.com is DQ8/DQ8. He is homozygous for DQ8. There are several HLA patterns. Some are proteins that reside within cells and others are on the outer surface of cells, and are called class II. The class II HLA proteins have very important immune functions. There are several class II HLA protein types but DQ have been found to be important in celiac disease, specifically DQ2 and DQ8. What does it mean to be homozygous or heterozygous for celiac genes? Homozygous means that you have two copies e.g. DQ2/DQ2, DQ8/DQ8 whereas heterozygous means you have one copy of DQ2 or DQ8. Some people have one copy of DQ2 and one of DQ8 (DQ2/DQ8) and they have a greater risk for celiac disease than someone with only one copy of either DQ2 or DQ8 but not as great a risk as someone with two copies of DQ2 (DQ2/DQ2). Since DQ2 is associated with a greater risk of celiac disease than DQ8, then one copy of DQ2 plus a DQ8 (DQ2/DQ8) indicates a higher risk than having two copies of DQ8 (DQ8/DQ8). Hopefully, I have not lost you yet but if I have please continue to read on because the information that follows will still be helpful to you. What is this alpha and beta subunit typing and why is it important? HLA DQ typing consists of two subunits of the DQ molecule, an alpha and beta subunit. So, both DQ types that indicate a risk of celiac disease, DQ2 and DQ8, are made up of two protein subunits designated alpha and beta. They determine the complex letter and number combinations reported. For example, the full DQ2 molecule is typically HLA DQA1*05xx DQB1*02xx. The A1 is the alpha unit and the B1 is the beta subunit. The beta subunit is the most important component of the DQ molecule, but the alpha subunit has also been shown to carry an increased risk for celiac disease. Unfortunately, since testing for both is more complicated and expensive it is not always done. Also, some think that since the beta subunit carries most of the risk and the alpha unit only minor risk, testing for only the beta subunit is adequate. Several clinical laboratories have chosen this approach. They only test for, and report on, DQ2 and DQ8 based on beta subunit types, so their results typically look like this: HLA DQB1*02 detected, DQ2 positive, etc. This is the policy of the laboratory at Bonfils, who also does testing for Quest Diagnostics and Enterolab as well as many hospitals. However, the alpha subunit of DQ2 also carries some risk for celiac disease. What if you are positive for the beta subunit of DQ2 or DQ8 by testing from Bonfils, Enterolab or Quest? If the beta subunit is present then Bonfils, Enterolab and Quest tests will report DQ2 and/or DQ8 positive. Sometimes the report will just report DQ2 negative and DQ8 negative, especially when a hospital is reporting the results obtained from Bonfils. However, when the beta subunit is not present and they report DQ2 negative and/or DQ8 negative, it is still possible that an alpha subunit could be present. Results reported in this manner are, in my opinion, potentially misleading. I believe they can lead a doctor to assume that an individual is not at increased risk for, or cannot have celiac disease, when this may or may not be true. Unfortunately, the patient in such circumstances may be told that they can not have celiac disease, yet they may not only be at risk for the disease, they may well have it while being told it is impossible or extremely improbable. What does Prometheus do and how do they report their results? Prometheus, like Kimball and LabCorp, includes alpha and beta subunit typing. In the past they did not indicate whether there was one or two copies of DQ2 or DQ8 if someone was positive. If a patient was DQ2 and DQ8 positive then these labs reported their full genetic DQ type. However, if one or the other was negative, their exact genotype was not reported. Recently, not only has Prometheus started reporting the full DQ2 and DQ8 genotype, but they are now reporting whether someone is homozygous or heterozygous as well. They are also reporting the relative risk for celiac disease based on the pattern shown by testing. However, they are still not reporting the other DQ types. What is the advantage of the new Prometheus reporting? Since Prometheus results now include a calculation of the individual’s risk of celiac disease, compared with the general population, the patient can see how high their risk of celiac disease is, as well as being able to estimate the risk for their parents and their children. As you can see, the risk of celiac disease has a wide range of possibilities, which depend on the individual’s DQ results. This risk can be below 0.1% if you do not have any portion of the high-risk genes DQ2 and DQ8. On the other hand, the risk may be very high (more than 31 times the risk of the general population) if you have two copies of the full complement of DQ2 molecule. Again, I would like to point out that if you have DQ2/DQ2, DQ2/DQ8, or DQ8/DQ8, then both of your parents and all of your children have to have at least one copy of an at-risk celiac gene. Your child’s complete type will depend on the DQ contribution from their other parent. What other laboratories do both alpha and beta subunit testing? Kimball Genetics and LabCorp also report both alpha and beta subunit results but the advantage of their testing is that they report the other specific DQ types detected. Gluten sensitivity is found in all DQ types except DQ4. Other DQ types, particularly DQ1, DQ5, are associated with a risk of gluten related neurological and skin problems. Microscopic colitis, food allergies and oral allergy syndrome reactions are also found in association with other DQ types. Though Enterolab does report other DQ types, including these markers of risk for gluten sensitivity, they do not test for, or report, alpha subunits since their DQ testing is done by Bonfils. Based on the limited data I have accumulated so far, DQ2 and DQ8 also seem to carry a risk of mastocytic enterocolitis. What if you do not have DQ2 or DQ8? According to data accumulated, but as of February 2008, not yet published by Dr. Ken Fine, unless you are DQ4/DQ4 you are still at risk for being sensitive to or intolerant of gluten. According to Fine’s fecal gliadin antibody data all DQ types except for DQ4 carry a risk of gluten sensitivity. My clinical experience supports this claim. The presence of one copy of DQ1, DQ3, DQ5, DQ6, DQ7, or DQ9, even with one DQ4, is associated with a risk for elevated stool gliadin antibody and symptoms of gluten sensitivity that responds to a gluten free diet. What if your genetic testing was done by Enterolab, Quest, Bonfils or a hospital that utilized Bonfils, and it indicated that you were DQ2 and DQ8 negative? Since Bonfils does not test for the alpha subunit and they perform the testing for Enerolab and Quest, you may not be completely negative for DQ2 or DQ8. You do not have the beta subunits associated with the highest risk for celiac disease. For example, you could be “half-DQ2” positive and still be genetically at risk for the autoimmune form of gluten sensitivity that we know as celiac disease, along with all of its risks. What if you have not yet had celiac DQ genetic testing? I recommend that everyone have the testing. I realize that most insurance companies and doctors, including some celiac experts, would disagree with me. However, the value of DQ testing is that it can provide a great deal of information about your risk, especially if you have testing done for both alpha and beta subunits. I recommend that you have testing done by Kimball Genetics, LabCorp or Prometheus if you have not yet had genetic testing done. If your insurance or budget does not allow for this more expensive testing, but does cover testing by Quest or Bonfils or you can afford the $159 that Enterolab charges, then I still recommend that you get DQ testing using one of these laboratories. You just need to be aware of the limitations of the results as I have reviewed them here. What are the advantages of DQ testing through Kimball Genetics? Kimball can perform testing on either blood or mouth swab samples. The tests can be ordered without a doctor’s order. You can purchase testing on mouth swab sample for $345. The advantages of Kimball’s tests include alpha and beta subunit testing and full DQ typing to determine if you carry the other gluten sensitive DQ patterns besides DQ2 and DQ8. What about LabCorp? LabCorp also provides both alpha and beta subunit testing and they report the other DQ types. They only provide testing on blood samples, a doctor must order the testing, and preauthorization is required. Do health insurance companies cover celiac DQ genetic testing? Many but not all health insurance companies cover HLA DQ testing and almost all require preauthorization. The ICD9 diagnostic codes that typically are honored are V18.5 genetic predisposition for gastrointestinal disease; V84.8, genetic predisposition for other diseases; and 579.0, celiac disease. Why are the genetics so difficult to understand and why are so many doctors either unaware of the testing or reluctant to order the tests? I write and speak about DQ genetic testing frequently, and try to get testing for as many of my patients as possible. However, many insurance companies will not cover the cost of these tests. Most primary care doctors and even some GI doctors are completely unaware of the existence of a genetic test for celiac disease. The testing is difficult to understand and the reporting by some labs is very confusing and even misleading. I realize that understanding the DQ genetics is difficult for the average layperson. Most scientists and doctors don’t understand this information, so don’t despair if you are having difficulty following this or understanding your results, and don’t be surprised if your doctor does not understand them either. However, you do not need to completely understand the complexities of HLA typing to locate your DQ types on figure 1 and determine your risk of celiac disease, non-celiac gluten sensitivity, etc. Then what do you need to know or remember about celiac DQ genetics? Hopefully, you now understand enough to know that you should consider having celiac DQ testing, if possible, especially if you have symptoms, laboratory tests, or an intestinal biopsy that is suggestive of celiac disease. You should also know that the testing can be done on blood or mouth swabs, and many insurance companies will cover the testing but most require preauthorization. You should also be aware that the testing is available without a doctor’s order, if you are willing to pay for it, and that some tests are better than others. I also hope you understand that the tests can help you determine your risk for celiac disease or if you are at risk for non-celiac gluten sensitivity. You should also know that your results, especially when combined with those of one or more family members, may help you determine, to some degree, the risks for your parents and your children. You should also know what laboratories offer testing, what test codes your doctor should use to order the tests, and that the absence of DQ2 or DQ8 does not exclude risk of gluten sensitivity or intolerance. Depending on what laboratory conducts your DQ testing, your results also may fail to exclude your risk of celiac disease. What if I am still confused or I don’t know how to interpret my genetic results or my previous evaluation for celiac disease? If you are still confused by your test results or want more a personalized review of your results, symptoms or diagnostic tests I recommend that you see a physician who is an expert in celiac disease and understands these tests. I also offer on-line consultation for a reasonable fee through a secure consultation site, medem.com. You simply register (registration is free) for secure on-line communication and request a consultation. The consultation fee is $50, and some insurance companies will cover on-line communication. I also see many patients from outside of Colorado Springs for consultation if you are willing to travel here.
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I had a celiac blood "screen" ordered through a GI consultant at a hospital last Friday (23rd November) and was wondering how long you recon it would take for the results to come back. As this was done through a consultant the results won't go straight back to my GP and I can't ring up. The hospital seems to mainly communicate through letters so I was wondering if they'd send a letter with the results it may take a bit longer to come back (I only just got a letter summarising the consultation I had before my test today). I'm just very anxious waiting for the results. (This was done on the NHS in the UK) Please does anyone remember how long it took for their blood results to come back? I'm really desperate.
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Understanding ANA results
rowanie posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Hi there, Thanks for taking the time to read this. I am so very confused, so thought I’d ask for help to see if anyone can understand my ANA results. I am currently under investigation for celiac and for ulcerative colitis. I had some bloods done last month and only through deciding to do a private referral (I am in the UK) have I found out there there are some abnormalities in my antinuclear antibodies. I asked my doctors for a print out of all my bloods. I have lower white blood cells, my ESR is very slightly raised. These are my ANA results: ENA ANTIBODIES - (SJM) • Ro antibody level - negative • La antibody level - negative • RNP antibody level - weak positive • Sm antibody level - negative • Jo-1 antibody level - negative • Scl 70 antibody level - negative DNA binding autoantibodies (SJM) - negative • Complement - third component - C3 - 1.39g/l (range 0.55-1.20) HEP2 ANA - (SJM) - Cytoplasmic Does anyone understand what this means? Do I ignore it? Why does it not say ANA negative or positive, but says cytoplasmic instead? Why is there no titre? I am no doctor so I have no idea, but I’d really like your opinion. Something has obviously been picked my from the lovely doctor I saw privately. I also have Raynauds Thanks so much for your help. -
Hi everyone, I had my TTG IGG test done recently by Quest Diagnostics and it came back as "10" (6 and higher is positive)... My TTG IGA test only came back as a "1" ( 4 and higher is positive)... First question, is 10 considered pretty high/noteworthy on the IGG or kinda not really? --They also tested for Gliadin (deamidated) IGA and it came back "5". Gliadin (deamidated) IGG came back as "2". For both 20 or higher is considered positive. Whatever all that is. The Dr. was basically like, this means you're really allergic to gluten (the high IGG score) and should just act like you have celiacs, which you (likely) don't.. I'm reading a lot though about positive IGG scores and negative IGA scores and not so reassured. Curious if any gurus can interpret my results better than I can. She didn't ever suggest an endoscopy etc just said cut out gluten. Thanks, Cal
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How long did it take you to get your blood test results? How were you notified of the results (letter, phone call etc.)?
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This is my second thread within a few days, sorry it is long! My biopsy results came today, exactly 6 weeks after the endoscopy. They were "reported as normal." And I am honestly devastated. I've been crying all day. I needed those samples to come back positive, because I cannot - no, I will not - go on like this anymore. Some background: I had panic attacks in 2011 that eventually had me hospitalised with a heart rate of 170. After leaving the hospital I noticed I had constant indigestion and light headedness, symptoms that they assured me were due to the heart rate. When things calmed down, they said it was the beta blockers. After coming off the beta blockers, I started questioning my doctors why I had indigestion, acid reflux; why I was now light headed in the cinema, squinting and holding my head from the loud noise; why I was now sensitive to the sun, to light, to heat; and why I had symptoms of IBS. To cut a long story short, I've been getting treatment for IBS and especially the reflux since 2012, with absolutely no success. I've had every test and I now have a hiatal hernia and acid/bile in the esophagus constantly. I've also had muscle pain and severe weakness, and joint pain. After writing my doctor a letter last May, he suggested testing for celiac, as all my symptoms fit and my father had actually been found celiac positive in his last blood test, but my dad had no idea about that until very recently. I've had three blood tests - all negative. I've had a biopsy - negative. And I've been eating copious amount of bread and wheat for many months, and have never felt worse. The doctors tell me that the reflux will just stop on its own one day. I don't think that ever happens. I mentioned that my father had been diagnosed with M.E/Chronic fatigue syndrome in 2000, and that for a long time we've wondered if I might have inherited it. They didn't really say anything to that. I know it's not good to have celiac disease, but it has treatment, and it has hope. There are worse things to be diagnosed with, crohns, even M.E. There is no treatment for those. I don't want to have fundoplication surgery for the reflux and hernia, because it sounds awful and scary. The gastroenterologist didn't even think the surgery was necessary when I last spoke to her. But I really cannot go on with it, I refuse, so without a diagnosis of celiac, what's left for me to do? Just fundoplication. I was prepared to replace my food, was planning it. I've been researching for months. I even managed to delude myself into believing I have celiac. When my dad got a letter a couple of weeks ago about his last blood test being "strongly suggestive of coeliac disease," I hoped even harder. I thought it was a sign! I feel so foolish. Now I'll have to wait to see the gastroenterologist again to talk about... What? Fundoplication? She didn't even want to do it. She just shrugged and smiled and said I was a difficult patient. I'm going to see my dad's doctor this week, if I can, to talk about how likely it is that I might have celiac after all, regardless of my results, because of my dad's positive blood test, and to discuss the possibility I might have M.E/Chronic fatigue syndrome. In all honesty, I was prepared to look into M.E, until my dad's letter. Then I was even more certain my problem was gluten. Now they tell me, I have no problem with gluten. I feel SO ill right now, I can only describe it as "malaise." My head is light yet heavy, with pressure. My eyes are begging to close. My gut has been painful for over a week. I can feel acid reflux as always. My nails are cracked and peeling, as always. There is blood in my stools. My muscles are painful and so weak that I couldn't stretch out my arm while holding a mug without my arm feeling weak and wobbly. My legs were wobbling as I walked on Saturday. My gums feel as if there could be an ulcer. And I have acne, pale/yellow skin tone, and a headache is threatening. I just can't go on. Really thinking about giving up. I will try to go gluten free anyway, but my mum doesn't believe gluten is my problem and has been sceptical the whole time, so she is reluctant to learn about cross contamination in the kitchen. She just says it's not the problem and it's something else. I don't want to have NCGS because I don't think my doctors/gastroenterologists believe it exists. Thank you for any help :(.
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