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Found 52 results

  1. How long did it take you to get your blood test results? How were you notified of the results (letter, phone call etc.)?
  2. 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.
  3. Celiac.com 10/05/2018 - This short quiz includes basic celiac facts, recent celiac and gluten-free news and other information that appeared in the last few months on Celiac.com. The answers are in the section below the quiz, so don't peek! True or False? A tainted gluten-free meal nearly killed an Australian woman. Bifidobacterium infantis NLS super strain reduces a-Defensin-5 expression in celiac disease patients. Vitamin A and D deficiency common in kids with newly diagnosed celiac disease. New UK fund promotes celiac research and gluten-free food improvement. Easy to spot tooth wear and enamel defects point to celiac disease. Undiagnosed celiac disease more common in women and girls. Research indicates 1.4% of humans have celiac disease. A new urine test can spot gluten in the blood of people with celiac disease. Women's diet during pregnancy has little impact on celiac disease risk in their infants. Gluten-Free condoms are available for people concerned about topical exposure to gluten. A Phoenix realtor recently advertised a house as 'gluten-free.’ Current screening methods miss significant cases of celiac disease. A new vaccine makes it safe for people with celiac disease to safely consume gluten. A long-distance conversation with a guru can help treat your celiac disease. Food made with gluten-free ingredients is safe for people with celiac disease. Celiac disease is a food allergy. Celiac disease rarely affects people of non-European ancestry. Celiac disease is a children’s condition. Celiac disease can be painful, but isn't life-threatening. A little gluten is okay for people with celiac disease and gluten-intolerance to eat. ANSWERS Here are the answers for our short quiz above on basic celiac facts, recent celiac news and other information. True or False? A tainted gluten-free meal nearly killed an Australian woman. TRUE Bifidobacterium infantis NLS super strain reduces a-Defensin-5 expression in celiac disease patients. TRUE Vitamin A and D deficiency common in kids with newly diagnosed celiac disease. TRUE New UK fund promotes celiac research and gluten-free food improvement. TRUE Easy to spot tooth wear and enamel defects point to celiac disease. TRUE Undiagnosed celiac disease more common in women and girls. TRUE Research indicates 1.4% of humans have celiac disease. TRUE A new urine test can spot gluten in the blood of people with celiac disease. TRUE Does Diet During Pregnancy Have Any Impact on Celiac Disease Risk in Infants? TRUE Gluten-Free condoms are available for people concerned about topical exposure to gluten. TRUE A Phoenix realtor recently advertised a house as 'gluten-free.’ TRUE. Phoenix realtor Mike D’Elena recently advertised a house as 'gluten-free’. Current screening methods miss significant cases of celiac disease. TRUE A new vaccine makes it safe for people with celiac disease to safely consume gluten. FALSE. While several such vaccines are under development, with some even undergoing clinical and human trials, no such drug has been proven to work and approved by the FDA. Hopefully the clinical tests will work and this will one day be an alternative for some people. A long-distance conversation with a guru can help treat your celiac disease. FALSE Food made with gluten-free ingredients is safe for people with celiac disease. FALSE. Just because food is made with gluten-free ingredients does not necessarily make it safe for people with celiac disease. Case in point, Domino’s Pizza recently introduced gluten-free pizza crusts. However, these pizzas are prepared in the same areas and ovens as Domino’s regular pizzas, and may be contaminated with gluten from wheat flour. These pizzas are not considered safe for people with celiac disease. There are many similar cases in the restaurant world. Contamination is a serious issue for some celiacs, so buyers be aware and be wary. Celiac disease is a food allergy. FALSE. Celiac disease is not a food allergy or an intolerance, it is an autoimmune disease. People with celiac disease suffer damage to the lining of the small intestine when they eat wheat, rye or barley. They also face higher risks for many other auto-immune conditions. Celiac disease rarely affects people of non-European ancestry. FALSE. Celiac disease is more common in people of northern European ancestry, but it affects all ethnic groups and is found in southern Asia, the Middle East, North Africa and South America. Celiac disease is a children’s condition. FALSE. Celiac disease can develop at any age. In fact, celiac disease is most commonly diagnosed in people aged 40-60 years old. Celiac disease can be painful, but isn't life-threatening. FALSE. It’s true that classic celiac disease symptoms, like stomach pain, bone pain, fatigue, headaches, skin rash, and digestive issues, won’t kill patients outright. However, undiagnosed or untreated, celiac disease can trigger other autoimmune disorders, and leave patients at much greater risk of developing certain types of deadly cancer. A little gluten is okay for people with celiac disease and gluten-intolerance to eat. FALSE. Gluten levels above 20 parts per million can cause adverse immune reactions and chronic damage in people with celiac disease. Read more about celiac disease, gluten, gluten-free and gluten intolerance facts at Celiac.com.
  4. Celiac.com 09/14/2018 - Celiac.com was all set to do a story on the latest peer-reviewed data on the Nima gluten testing device, when along comes Gluten-Free Watchdog with another of their famous non-recommendations. Gluten-Free Watchdog says they cannot recommend the Nima gluten test kit because of alleged flaws. But what does the science say? The latest Nima article and Gluten-Free Watchdog’s complaint both focus on the science, so let’s start there. Nima makes two different food sensors: one detects gluten, the other detects peanuts. Each sensor comprises a small, handheld electronic device and a cartridge. To test food, consumers place a pea sized amount into the cartridge, place the cartridge inside the sensor, and run the device. They then receive a smiley face or wheat symbol with "gluten found," depending on whether or not the Nima device detected the allergen. Nima reported their original data in a peer-reviewed scientific journal. Among the conclusions: “Compared with reference R5, Nima antibodies (13F6 and 14G11) had 35- and 6.6-fold higher gliadin affinities, respectively. Nima demonstrated device performance using a comprehensive list of foods, assessing detection sensitivity, reproducibility, and cross-reactivity. Nima presented a 99.0% true positive rate, with a 95% confidence interval of 97.8%–100%.” Gluten Free Watchdog says that: “Based on third party testing data, the Nima Sensor fails to detect gluten at the 20 ppm level over 20 percent of the time. It isn’t until a sample contains a level of gluten at the 40 ppm level, that a gluten found result is received close to 100% of the time.” Gluten Free Watchdog suggests that this is a problem, because: “At a level of gluten in a sample from less than 2 ppm up to a level of gluten between 30 ppm and 40 ppm, the result displayed on the Nima Sensor may be either smiley face or gluten found. If a sample is tested with a Nima Sensor and the result is a smiley face, there is no practical way for a consumer to know if the level of gluten in the sample is less than or more than 20 ppm. If a sample is tested with a Nima Sensor and the result is gluten found, there is no practical way for a consumer to know if the level of gluten in the sample is less than or more than 20 ppm. As a result, the data point received from the Nima Sensor for gluten presents major interpretation problems.” Gluten Free Watchdog charges that Nima uses “NOT the scientifically validated Ridascreen Gliadin R5 ELISA Mendez Method from R-Biopharm used by Gluten Free Watchdog.” The fact is that R5 Elisa remains the industry standard for most testing applications. Gluten Free Watchdog closes its warning with a word from their independent expert: According to Adrian Rogers, Senior Research Scientist at Romer Labs, “It could be argued that the device is not fit for purpose as the company states that there is a clear differentiation between safe and unsafe products based on a 20 ppm level which the validation data does not corroborate.” It’s worth noting that for all his accomplishments, Rogers is neither a doctor, nor a PhD. Rogers' LinkdIn page lists his education as: Bsc (Hons), Microbiology, University of Wales, Aberystwyth. A Bachelor of Science degree may not necessarily make an expert in this subject, yet he is presented as one. Rogers also seems to have a potential conflict of interest that was omitted in Thompson’s press release. Directly from Rogers’ LinkdIn site: “Romer Labs®, Inc. developed an immunochromatographic lateral flow assay for the qualitative detection of gluten in raw ingredients, processed foods, finished food products, and environmental surfaces, using the G12 antibody developed by Belén Morón. The G12 antibody targets a 33-mer peptide which is resistant to enzymatic digestion and heat denaturation, as well as being the fragment of the gliadin protein to which celiac disease sufferers react, making it a reliable analytical marker.” The company Rogers works for, Romer Labs, makes its own gluten testing kits. It seems a bit disingenuous for Gluten Free Watchdog to use a spokesperson from a potentially competing company to try to counteract a peer-reviewed scientific publication for a device which is made by a potential competitor. Nima’s Scientific Advisory Board includes some of the most highly respected celiac disease researchers and scientists in the world. They include: Peter HR Green, MD Phyllis and Ivan Seidenberg Professor of Medicine. Director, Celiac Disease Center at Columbia University; Jody Puglisi, PhD Stanford University Professor of Structural Biology; Lucille Beseler, MS, RDN, LDN, CDE, FAND Family Nutrition Center of South Florida; Benjamin Lebwohl, MD, MS Director of Clinical Research Celiac Disease Center at Columbia University; John Garber, MD Gastroenterology, Mass General; and Thanai Pongdee, MD Consultant, Division of Allergic Diseases, Mayo Clinic. Nima says that Gluten Free Watchdog’s view of their recently published validation is incomplete and misleading. Nima wrote: “All the studies show Nima is highly sensitive across a range of both low and high levels of gluten." "The Nima third party data accurately reported gluten found at 20 ppm and above between 93.3% for food as prepared (a food item that is spiked with an intended quantity of gluten) and 97.2% for food as quantified by an ELISA lab kit (used to determine the exact ppm of gluten in the food)." "The Nima peer reviewed study published in the Food Chemistry Journal reported gluten found at 20 ppm and above at 96.9% accuracy." The statement that: “'Nima will fail to detect gluten at 20 ppm 20% of the time' is almost entirely driven by 1 specific food out of 13 tested. That sample, when quantified, was actually below 20 ppm." "In real life, people get glutened at many different ppm levels, not just 20 ppm. Nima has been shown to detect gluten at levels below, at and above 20 ppm across a variety of foods in a number of studies.” Reading the peer reviewed data provided by Nima, and reading Gluten Free Watchdog’s complaints, it becomes clear that Gluten Free Watchdog’s complaints sound serious and authoritative, but ring a bit hollow. Consider the Following Analogy Imagine a gluten-sniffing dog that performed as well as Nima in scientific trials; same performance, same exact data. You can give this dog a sniff, or a small bite of food, and he can signal you if the food’s got gluten in it with 97% accuracy at 20ppm or below. Nearly 100% accuracy at 40ppm or above (as stated by Gluten Free Watchdog). People would think that the dog was not only cute and fluffy, but wonderfully helpful and everyone would love it, and everyone with celiac disease would want one. And it would be a great big gushing warm and fuzzy feel-good story. Pretty much no one would be arguing that the dog was potentially dangerous, or somehow unfit for people with celiac disease. Such dogs would also be far more expensive to own and maintain than the Nima device. Apparently such dogs can cost upwards of $16,000, not including the cost of food, vet bills, etc. So, what’s the accuracy rate of a gluten-sniffing dog, anyway? From Mercola.com: Willow, a German shorthaired pointer, is another gluten-sniffing dog, in this case living in Michigan. Her owner, Dawn Scheu, says she can detect gluten with 95 percent to 98 percent accuracy. She worked with a trainer (the same one who trained Zeus) to teach her own dog to detect gluten, with excellent results. Gluten-sniffing dogs may detect gluten in amounts as small as .0025 parts per million with 95 percent to 98 percent accuracy. So, will Gluten Free Watchdog be warning against gluten-sniffing dogs anytime soon? Somehow, because Nima is a mechanical device made by a company, it's not so warm and fuzzy, not so feel-good. Maybe Nima needs to shape their device like a cute little doggy, or a Pez candy dispenser? But the data remains, as does the fact, whatever its drawbacks, anything that detects gluten like Nima does, as well as it does, is potentially very helpful for celiac disease in numerous situations. And it is extremely unlikely to do them any harm. Nima seems very much committed to transparency, scientific excellence, and continual product improvement. These are noble goals and generally a win for people with celiac disease. Think of it, just ten years ago, a portable gluten-sensor with the kind of accuracy Nima is reliably achieving would have been the stuff of fantasy. Yet here it is. More accurate than any gluten-sniffing dog, and for a couple hundred bucks. People with celiac disease are living in a very different world than just a few years ago. Nima did not have to publish its data, but it chose to do so, and in a reputable, peer-reviewed scientific journal. Nima conducted its research using solid scientific standards, and reported those results publicly. They explained their methodology and results, they acknowledged product limitations and expressed a commitment to improvement. How is this remotely controversial? The celiac disease community is fortunate to have companies committed to investing time and money into products and devices that help to improve the lives of people with celiac disease. We feel strongly that the perfect should not be the enemy of the good. Devices like the Nima gluten sensor can be helpful for numerous people with celiac disease. Disclosure: Nima is a paid advertiser on Celiac.com. Celiac.com's advertisers do not influence our editorial content. Read Nima’s full report on test data at: Food Chemistry.com Read Gluten Free Watchdog’s Statement on the Nima device at: Glutenfreewatchdog.org Read Nima’s Reply to Gluten Free Watchdog at: Nimasensor.com
  5. I went to the doctor recently for the first time in about 10 years for a general check up. While there, I mentioned my history of stomach problems and inflammation and pain caused by eating grains. I told the doctor I've been managing this problem through diet for about 6 years. While I don't worry about gluten specifically, I rarely eat grains unless its the holidays or a special occasion. I always pay for it later, but I've generally not worried too much about it. She wanted to check for Celiac and ran a IGA blood test. The test came back in normal. Through research, I found that since I have been mostly gluten free (due to being grain free) for years now, the test is probably not accurate. Is this true? Should I put myself through the hell of eating gluten for a few weeks in order to have the test ran again?
  6. If anyone could clear this up for me it would be really helpful. My primary care doctor wasn’t able to get me in for months and my insurance isn’t very good so I found a lab online to do blood work. i only did the gluten allergy IGg blood test. I got my results online today and I don’t understand them fully. From what it says I’m ‘in range’ but my range is exactly what the range number is. Therefor is it higher than average just not high enough to be out of range? This is the results I have. In range <2.0 Reference range <2.0 mcg/mL so technically I’m not over the range but there’s nothing to reference, as in do most people that aren’t gluten sensitive have a 0? Because I feel awful most days with serious brain fog, anxiety and depression and massive headaches that never go away and stomach cramps and I can’t see what else could be causing this. I already had an ultrasound from my gynecologist and I don’t have anything visably wrong on the ultra sound causing the stomach cramping. Any insight would be helpful since I can’t get a doctor to fully interpret this. Thank you!!
  7. I was wondering if someone can help me understand my results. I got wishy washy responses from two different doctors and I am still pretty confused. I attached an image of my results, but in case you aren't able to view it, my Gliadin IgA is high, but everything else seems to be in low and in normal range. Anyone know what this means? At the time of this test, I was on a pretty low to no-gluten diet. I'd appreciate any insight you all can provide!
  8. Celiac.com 02/26/2018 - People with celiac disease and gluten-sensitivities react adversely to gluten proteins in wheat, barley and rye. The gold standard for assessing gluten levels in foods is a test called the enzyme-linked immunosorbent assay, aka ELISA. Now, ELISA is, by most measures, a good test. However, it does have some drawbacks. ELISA tests do vary by manufacturer, and can provide inconsistent results, including false negatives, which can be harmful for people with celiac disease or gluten-sensitivity. Also, for optimal detection, each type of gluten requires a different ELISA. So, barley, wheat and rye all require separate tests. Researchers Kevin D. Dorfman, Scott P. White and C. Daniel Frisbie claim they have developed a gluten detector that can rapidly detect and quantify different sources of gluten with a single test. Their team says that their gluten assay device is based on floating gate transistor technology, and relies on tiny micro-channels for a sample to move through. Gluten in a sample will bind to one of three capture agents, which can be antibodies or a DNA-based aptamer, that specifically latch onto gluten proteins from certain sources. This binding causes a shift in the voltage read-out of the transistor which acts as a chemical fingerprint that identifies the gluten as being from barley, wheat, or rye. As with ELISA, the device could detect gluten below 20 parts per million, which is the maximum threshold allowed by the U.S. Food and Drug Administration for a "gluten-free" label. Because it has fewer processing steps, and uses automated sampling, the new sensor typically produces results 45 minutes faster due than ELISA tests. The new test is still in development, and not set to replace ELISA anytime soon. But progress in the gluten-free world is rapid these days, so changes to commercial gluten detection systems are likely on the near future. Source: American Chemical Society
  9. Hi, im just wondering how long you all waited for your results for endoscopy biopsy? I rang the lab today and apparently they have already been sent to my gp! That seems really quick to me! Also what were your symptoms? i went gluten free about 10 years ago. Was having stomach issues. Did every test but the endoscopy (I chickened out). Fast forward stomach issues returned. So return for a bunch of tests. Got diagnosed with Hashimotos. So Doc recommended confirming celiac. Gluten challenged. Omg that really sucked! Crippling pain, tired all the time. Toilet drama, I looked pregnant, so much so that people actually asked! So bloated! Gong to Gp tomorrow...
  10. Hello everyone, So, a little bit of background I suppose. I've been perusing this site for a long time now trying to find answers. I've been suffering from random extremely itching patches on my feet. Nausea in the morning (or throughout the day). Brain fog, forgetting things, muscle aches, joints constantly cracking and other intestinal issues. I also suffer from a mysterious short of breath symptom that comes and goes. It feels like I can't take a full breath in even though I'm getting enough oxygen. This has been tested and no one can figure out what is causing it. I recently got the celiac panel done to see if I do indeed have it. However, I'm worried that my doctor does not know much about the disease. I'm hoping that someone can help me with my test results. DEAMIDATED GLIADIN IGA 9.8 units 0.0 - 19.9 units SPECIMEN APPEARS SLIGHTLY LIPEMIC. Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 DEAMIDATED GLIADIN IGG 3.5 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 Gliadin IgA 11.3 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 Antigliadin IgG 159.9 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 TISSUE TRANSGLUT.IGA 7.6 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 TISSUE TRANSGLUT.IGG 1.9 units 0.0 - 19.9 units Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 IGA IMMUNOGLOBULIN 280 mg/dL 87 - 352 mg/dL So, as you can see, my IgG is sky high according to this test. Is this celiac? Or am I going to have to keep looking for an answer? Thank you so much for any help. I'm getting desperate after years of searching.
  11. Celiac.com 11/30/2017 - Talk about handling a celiac disease diagnosis in style. This past summer, "Us" star Mandy Moore showed us how its done, when she documented the process of working with her doctor to determine if she had celiac disease. She even posted a photo of her endoscopy visit for her Instagram followers. Moore captioned the post: "Grog city. Just had an upper endoscopy to officially see whether or not I have celiac (only way to officially diagnose)…things are looking 👌)." Later, and also on Instagram, she revealed that she had been diagnosed with celiac disease. "Well, this definitely takes the (now gluten free cake) for bummer news," she wrote on her Instagram story at the time. "Any celiac sufferers out there with any helpful tips??" Maybe consider looking at Celic.com for helpful tips and information on living with celiac disease and eating gluten-free? Later, she posted another message, thanking her fans for sharing their knowledge with her, adding that there were "so many lovely humans out there. My heart is full." Moore seems to be embracing the realities of a gluten-free diet. Later, in an Instagram post celebrating her engagement to Taylor Goldsmith, Moore thanked her friends and family for their support, and noted that she planned to "enjoy some delightful gluten-free tea sandwiches (and 🥂) like ladies do." Best of luck to Mandy Moore in dealing with her new found celiac disease diagnosis.
  12. Celiac.com 11/13/2017 - ImmusanT, Inc., the company working to develop a therapeutic vaccine to protect HLADQ2.5+ patients with celiac disease against the effects of gluten, presented data that shows a way to tell the difference between celiac disease and non-celiac gluten-sensitive (NCGS) based on cytokine levels. Professor Knut Lundin, University of Oslo, presented the data at United European Gastroenterology (UEG) Week 2017. The results are important, in part because many people go on a gluten-free diet before they ever get diagnosed with celiac disease. It's hard for doctors to ask these people to start eating gluten again so that they can be properly diagnosed. But that's how it currently works. If there are no anti-gliadin antibodies in your blood, current tests are not accurate. These data suggest that it is possible to spot celiac disease through plasma or blood test. Along with easier, more accurate celiac diagnoses, a blood test would be a major breakthrough because "patients would only be required to consume gluten on one occasion and would still achieve accurate results," said Robert Anderson, MBChB, Ph.D., Chief Scientific Officer of ImmusanT. The test may also help people who do not have celiac disease, but find symptom relief on a gluten-free diet. For these people, gluten may not be the cause of their symptoms and a gluten-free diet may be totally unnecessary. The latest data support the company's approach to "developing a simple blood test for diagnosing celiac disease without the discomfort and inconvenience of current testing methods. This would be the first biomarker for measuring systemic T-cell immunity to gluten," said Leslie Williams, Chief Executive Officer of ImmusanT. As development is ongoing, further tests are expected to flesh out the details. Source: Immusant
  13. Celiac.com 11/11/2017 - (NOTE: This article is from 2012 and is being made available as Celiac.com rolls our past issues of Journal of Gluten Sensitivity) It's just like being a little kid with a super sore throat and your mom taking you to the doctor to get a test for strep throat. The doctor swabs your throat with two sticks to find out what nasty bacteria is camping out. In just moments you've got a diagnosis of strep throat and can start antibiotics to miraculously make the pain go away. You go home with a prescription, get in bed and eat mom's homemade chicken rice soup until you feel better in a couple of days. How cool would it be if getting diagnosed with celiac disease was this easy? The wonderful news is that we're getting closer to having a test that will diagnose celiac disease with just a simple prick of a finger and a 10-minute wait. The CeliacSure Test Kit measures (anti-tTG) IGA antibodies from a fingertip blood sample. It works by taking a small drop of blood, mixing it with a buffer and applying the mixture onto a test cartridge. Within moments two red lines appear if the test is positive, while only one line appears if the result is negative. And, you can take the test at home without ever getting out of your pajamas! "The test kit is a point-of-care, at-home test that's very similar to reading results of a pregnancy test," said Dr. Daniel Leffler of the Celiac Disease Center at Beth Israel Deaconess Medical Center in Boston. Dr. Leffler, a gastroenterologist by training with a background in nutrition, has a long-standing interest in celiac disease. Several years ago he teamed up with Dr. Ciaran Kelly and Dietitian Melinda Dennis to found the Celiac Disease Center at Beth Israel Deaconess Medical Center where they focus not only on providing top notch patient care, but also on high level disease research. The latest project: studying the efficacy of the CeliacSure test for celiac disease diagnosis. Dr. Leffler said his team got involved with the finger prick test study because they feel it's important to take down barriers to patients getting diagnosed with celiac disease. "We do a lot with educating other medical providers about offering in-clinic testing, but I think it's really important to put a tool in the hands of the people." "We've teamed up with the [marketers] of the test kit at GlutenPro/Biocard CeliacSure Test to see how effective this test is in the USA. We're providing 2 kits per family to use on first-degree relatives of people with celiac disease. To qualify, participants in the study must not be on a gluten-free diet. We send them the test kit to take as well as a survey about their ability to use and understand the test. The goal is that this small study comes out favorable [sic] so we can move on to large scale studies that will compare the finger prick test to the gold standard laboratory serology testing." Dr. Leffler says he's really excited about the potential of this point-of-care test because it will "allow us to reach a population that might not otherwise come in to get tested, mainly first degree relatives of patients already diagnosed with celiac disease." It's important to note that right now the CeliacSure test is only for research purposes, not actual diagnosis. It is available in Canada and other countries, but it's still under evaluation here in the United States. And, while the strep throat analogy is a great way to think about how this test will work, it's extremely important to understand that if you get a positive result with the CeliacSure test, do not start a gluten-free diet until you have followed up with a doctor to confirm the diagnosis. As with all medical studies there's some fine print you need to know about. Participants in the study must meet all of the following criteria: 1. Over the age of 18 2. A first or second degree relative with celiac disease 3. Not previously diagnosed with celiac disease 4. Not on a gluten-free diet or low-gluten diet within the past 3 months 5. Able and willing to self administer the test, complete a short survey form and return both in the envelope provided 6. Willingness to have follow up medical evaluation in the event of a positive test 7. A resident of the United States Listen to a full interview with Dr. Leffler about the CeliacSure study on the Hold the Gluten Podcast (http://traffic.libsyn.com/holdthegluten/050_HoldTheGluten-05Apr2012.mp3) with Vanessa Maltin Weisbrod and Maureen Stanley now! And, if you would like to participate in the study, please contact Dr. Toufic Kabbani at celiac@bidmc.harvard.edu or by phone at 617-667-0528.
  14. Celiac.com 11/16/2017 - If people with celiac disease hope to avoid complications, then it's important for their gut mucosa to heal. However, besides biopsy, there is currently no good way for doctors to assess that a patient has healed enough to experience full remission. A team of researchers recently set out to assess the role of a point-of-care test (POCT) based on IgA/IgG-deamidated gliadin peptide, in detecting persistent villous atrophy in celiac disease. The research team included Michelle S Lau, Peter D Mooney, William L White, Michael A Rees, Simon H Wong, Matthew Kurien, Nick Trott, Daniel A Leffler, Marios Hadjivassiliou and David S Sanders. They are affiliated with the Academic Department of Gastroenterology at Royal Hallamshire Hospital, Sheffield Teaching Hospitals, in Sheffield, UK, and with the Celiac Center and Division of Gastroenterology at Beth Israel Deaconess Medical Center in Boston, Massachusetts, USA. The research team recruited celiac disease patients undergoing endoscopy for the assessment of histological remission. All patients had IgA-endomysial (EMA) antibodies, IgA-tissue transglutaminase (TTG) antibodies, received a POCT, and completed a validated dietary questionnaire. All patients received a gastroscopy, with four biopsies taken from the second part of the duodenum and one from the duodenal bulb. The research team then compared the diagnostic performance of the surrogate markers against duodenal histology as the reference standard. From 2013 to 2017, the team evaluated a total of 217 celiac disease patients. 70% of patients were female, ranging in age from 16–83 years, with an average age of 53 years. Patients had been on a gluten-free diet for an average of 6 years when recruited. Eighty-five (39.2%) patients had persistent villous atrophy. The sensitivities of the POCT, TTG, EMA, and the adherence score in detecting villous atrophy were 67.1%, 44.7%, 37.7%, and 24.7% respectively (P=0.0005). The combination of the POCT and adherence score only marginally increased the sensitivity to 70.6% (59.7–80.0%). The POCT showed a higher sensitivity than the other markers in predicting villous atrophy. A POCT may help doctors get a quick, accurate assessment of mucosal healing levels during simple follow-up office visits. Source: The American Journal of Gastroenterology , (10 October 2017). doi:10.1038/ajg.2017.357
  15. Celiac.com 10/17/2017 - Are primary care physicians under-testing for celiac disease in patients with iron deficiency anemia? A new survey of primary care doctors indicates that they are. It's fairly common for people with celiac disease to develop iron deficiency anemia (IDA), but researchers don't know much about the frequency with which primary care physicians test for celiac disease in patients with IDA. A team of researchers recently set out to describe how primary care doctors approach testing for celiac disease in asymptomatic patients with IDA. The research team included Marisa Spencer, Adrienne Lenhart, Jason Baker, Joseph Dickens, Arlene Weissman, Andrew J. Read, Seema Saini, and Sameer D. Saini. They are variously affiliated with the Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan, United States of America; the Department of Internal Medicine, Henry Ford Health System, in Detroit, Michigan, United States of America; the Department of Statistics, University of Michigan, Ann Arbor, Michigan, United States of America; the Research Center at the American College of Physicians, in Philadelphia, Pennsylvania, United States of America; Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan, United States of America, Ambulatory Care, Veterans Affairs Medical Center, Ann Arbor, Michigan, United States of America. For their study, the team began by electronically distributing a survey to primary care doctors who are members of the American College of Physicians. The survey asked whether doctors would test for celiac disease, either by serologic testing, referral for esophagogastroduodenoscopy [EGD], or referral to GI) in hypothetical patients with new IDA, including: (1) a young Caucasian man, (2) a premenopausal Caucasian woman, (3) an elderly Caucasian man, and (4) a young African American man. The team chose the scenarios to assess differences in testing for celiac disease based on age, gender, and race. They used multivariable logistic regression to identify independent predictors of testing. Testing for celiac disease varied significantly according to patient characteristics, with young Caucasian men being the most frequently tested (61% of respondents reporting they would perform serologic testing in this subgroup (p Interestingly 80% of doctors surveyed said they would definitely or probably start a patient with positive serologies for celiac disease on a gluten-free diet prior to confirmatory upper endoscopy, which is contrary to guideline recommendations. This survey indicates that primary care doctors are under-testing for celiac disease in patients with IDA, regardless of age, gender, race, or post-menopausal status. The majority of primary care doctors surveyed do not strictly adhere to established guidelines regarding a confirmatory duodenal biopsy in a patient with positive serology for celiac disease. Clearly, even with all of the advances in celiac disease awareness and with more refined protocols, primary care doctors have some work to do when it comes to testing IDA patients for celiac disease, and even more work to do in following proper referral guidelines before putting patients on a gluten-free diet. Source: PLOSONE
  16. Celiac.com 08/28/2017 - After 14-day gluten challenge, an HLA-DQ-gluten tetramer blood test provides better detection of celiac disease than biopsy. Can that lead to new disease detection methods in patients who are already on a gluten-free diet? Doctors attempting to diagnose celiac disease are often confronted by patients who have already given up gluten. For such patients, diagnostic guidelines currently call for a gluten challenge of at least 14 days, followed by duodenal biopsy. There isn't much good data on how many false-positive results are generated by this method. To get a better picture, a team of researchers recently studied responses to 14-day gluten challenge in subjects with treated celiac disease. The research team included Vikas K Sarna, Gry I Skodje, Henrik M Reims, Louise F Risnes, Shiva Dahal-Koirala, Ludvig M Sollid, and Knut E A Lundin. They are variously affiliated with the Department of Immunology and Transfusion Medicine, Oslo University Hospital, Norway; K. G. Jebsen Coeliac Disease Research Centre, University of Oslo, Norway; Department of Clinical Service, Oslo University Hospital, Norway; Department of Pathology, Oslo University Hospital, Norway; Centre for Immune Regulation, University of Oslo and Oslo University Hospital, Norway; and the Department of Gastroenterology, Oslo University Hospital, Norway. The research team took a group of 20 patients with biopsy-verified celiac disease, all in confirmed mucosal remission, and presented them with a dietary gluten challenge of 5.7 grams per oral gluten per day for 14 days, then conducted duodenal biopsies. They analyzed blood by multiplex assay for cytokine detection, and by flow cytometry using HLA-DQ:gluten tetramers. Nineteen of the twenty participants completed the challenge. Biopsy results showed villous blunting in 5 of those 19 patients. Villous height to crypt depth ratio reduced with at least 0.4 concomitantly with an increase in intraepithelial lymphocyte count of at least 50% in 9 of the 19 patients. Interleukin-8 plasma concentration increased by more than 100% after 4 hours in 7 of 19 subjects. Frequency of blood CD4+effector-memory gut-homing HLA-DQ:gluten tetramer-binding T cells increased by more than 100% on day 6 in 12 of 15 evaluated participants. For most celiac patients, a 14-day gluten challenge did not result in sufficient mucosal architectural changes for clear diagnosis (sensitivity ≈25%–50%). The team found that an increase in CD4+ effector-memory gut-homing HLA-DQ:gluten tetramer-binding T cells in blood 6 days after gluten challenge is a more sensitive and less invasive biomarker for celiac disease. The team is calling for further study. Being able to diagnose celiac disease without biopsy could really help to improve the entire diagnostic process, and could easily lead to an increase in diagnosis. Source: Gut
  17. Hi all, so ive been tested for Coeliac Disease due to lethargy, brain fog, anxiety and I have MTHFR. The results are below. Is another test available? Did I miss a test? tTG IgA Abs 1U/ml. ( <7 ) Deamidated Gleason IgG Abs 1U/mp ( <7 ) IgA 1.6g/L ( 0.7 - 4.0 ) Ive had a 23andMe test done which says HLA-2QA2 Risk Allele = A Your Alleles = AA Your Result +/+ thanks Dave
  18. i went gluten free without being tested now im getting tested so i went back to eat gluten and everything tastes weird bread, pizza, cookies everything has a really Strong taste and im actually not enjoying this at all it doesnt taste the same as before i went gluten free it tastes bad and Strong and weird it has been 2 weeks eating gluten and everytime it tastes like that :/ and also everytime i eat normal amounts of fat foods i feel nauseous i wonder why that is
  19. Hi, I'm newly diagnosed. Had endoscopy & colonoscopy first, then one week later GI's office called and told me to go have bloodwork done. About one week after the bloodwork GI's nurse called saying I have Celiacs and to go ahead and start a gluten-free diet. Didn't speak to the doctor, I follow up with him July 27th. Test Results: EMA Titer 1:20 Gliadin Deamidated AB - IgA 17 (<20 antibody NOT detected); IgG 68 H (>20 antibody detected) Tissue Transglutaminase AB - IgG 1 (<6 antibody NOT detected); IgA 28 H (>4 antibody detected) Total IgA 153 (Range 81-463) I've done some reading and *think* I understand these results, except for one thing... Does it tell me anything that my TIgG and Gliadin IgA are lower (not detecting antibodies)? I would have assumed both test IgAs would be low or both IgGs but not flip flopped. I didn't follow a gluten-free diet prior to bloodwork, however, I do follow a predominately whole food based diet, could that account for any of these numbers? I guess my real question is: can these numbers tell me anything other than, "you have Celiac Disease" ? My understanding is that these numbers cannot tell you anything about the severity, gluten sensitivity or level of damage... is that correct? I would like to extrapolate the most I can from this test. Is there anything else I might be able to surmise before I see my GI in a few weeks? Thanks so much, I've already learned a lot from poking around on these forums!
  20. Hi everyone, i've been experiencing a few symptoms of a gluten intolerance for a few months now and decided to buy a xeliac home test kit before i booked an appointment with the GP. The results showed an extremely faint line on the test side and im not sure if this means its positive or negative Its so faint its almost hard to see. Any help would be great!! thank you
  21. My daughter did blood test for antibodies anti-Transglutaminase (tTG) IgA and/or IgG (which is to determine whether it is Celiac or not) and the doctor never told us that she didn't have to eat anything before the test (she tends to fade). If she ate something with gluten before your blood test, is it possible that it comes out positive even if she's not or viceversa?
  22. I was diagnosed with Celiac Disease back in October through blood work. I have an appointment with Gastroenterology at the end of this month. I have heard horror stories that doctors not finding the villi damaged will make them not diagnose you with Celiac Disease, when in fact you still have it. I have had a upper endoscopy before and it was the worst experience. (This was years ago when I first started having severe stomach issues. But also before I got severely ill like I am now. He did not take biopsies and did not find anything. Of course, again he blamed all my pain and symptoms on anxiety) Now that I have been diagnosed with Celiac disease my whole life and symptoms make sense now. Anyway I wanted to meet with the doctor first, to see what he believes when it comes to properly diagnosing celiac disease. What are some questions that I should be asking this doctor and how can I make the next endoscopy a better experience? Any advice would be greatly appreciated. Thanks, Shelby
  23. I posted on here a few days ago asking for help understanding my test results since my doctor didn't know how to interpret them. However, no one has replied. PLEASE can someone help me understand these results? I think it is listing the ones I tested positive for, which includes the DQ2 gene carried by 90% of people with Celiac. HLA DRB1, DQB1 LOW RESOLUTION DRB1 DRB1*07 (DR7) DRB1 DRB1*11 (DR11) DQB1 DQB1*02 (DQ2) DQB1 DQB1*03 (DQ7) COMMENT SEE BELOW. Serologic equivalent is given in parentheses. When only a single antigen or allele is detected, it likely indicates homozygosity and is reported accordingly. However, additional testing would be required for confirmation. Low resolution HLA typings are routinely performed by PCR-rSSO or PCR-SSP methodologies. Thank you in advance for your help.
  24. I went in for my DQ2/DQ8 test and got the results today. However, the doctor didn't know how to interpret them and is going to call the lab to get an interpretation. In the meantime, does anyone on here know what this means? I think it is the list of the genes I tested positive for. Here is a copy of the lab report: HLA DRB1, DQB1 LOW RESOLUTION DRB1 DRB1*07 (DR7) DRB1 DRB1*11 (DR11) DQB1 DQB1*02 (DQ2) DQB1 DQB1*03 (DQ7) COMMENT SEE BELOW. Serologic equivalent is given in parentheses. When only a single antigen or allele is detected, it likely indicates homozygosity and is reported accordingly. However, additional testing would be required for confirmation. Low resolution HLA typings are routinely performed by PCR-rSSO or PCR-SSP methodologies. The version(s) of the IMGT HLA database used to interpret the HLA results is available upon request.
  25. Hi, See if any experts here can help. My test result in May 2016 was Total igA normal anti ttg igA 42 (20 is cutoff) anti gliadin igA 55 (20 cutoff) I didnt choose to have a biopsy so I just went gluten-free I took repeated test about 50 days apart and the anti ttg igA went from 42--20---36---20---17. It has become negative. Antigliadin igA went from 55--50---47---70. Anyone can explain what the hell is going on with these numbers?
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