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Found 56 results

  1. Hello, I am brand new here. I have had blood work (while eating gluten). Followed by genetic testing (positive for both genes). Now I am on a 4 week gluten free challenge. Doc says she will then repeat my blood work and if my levels normalize she will order an endoscopy and biopsy. My question/concern is that my blood work is barely positive as follows: test: value: lab range IMMUNOGLOBULIN A 159 87-352 TTG IgA <2 U/mL 0-3 anti-gliadin antibody, IGG, serum 9 0-19 anti-gliadin antibody, IGA, serum 20 0-19 has anyone received a positive diagnosis in a situation like this? I've been gluten free for 3 days now and I already feel different. almost like every cell in my body is responding somehow.
  2. I have recieved the results of the blood test for the increased number of antibodies and I have tested positive at a level of 155. Is this a high number of antiobodies or not? Has anyone had higher or lower and been diagnosed? I will be getting a biopsy in around 4 weeks. thanks in advance.
  3. Celiac.com 09/03/2018 - Can an office-based point of care test (POCT) improve celiac disease detection and diagnosis? A team of researchers recently set out to measure the diagnostic performance of an IgA/IgG-deamidated gliadin peptide (DGP)-based POCT for celiac disease detection, patient acceptability, and inter-observer variability of the POCT results. The research team included Michelle S. Lau MBChB, Peter D. Mooney MD, William L. White MBChB, Michael A. Rees BMedSci, Simon H. Wong MBChB, Marios Hadjivassiliou FRCP, Peter H. R. Green MD, Benjamin Lebwohl MD & David S. Sanders FRCP. They are variously affiliated with the Academic Department of Gastroenterology, the Academic Department of Neurosciences and University of Sheffield, Royal Hallamshire Hospital, Sheffield Teaching Hospitals, Sheffield, UK, and with the Celiac Disease Centre at Columbia University Medical Centre in New York, NY, USA. Beginning in 2013, and running through 2017, the team recruited patients who had been referred for secondary care with gastrointestinal symptoms, anemia and/or weight loss (group 1), along with a group of patients with self-reported gluten sensitivity, but unknown celiac disease status (group 2). Every patient in the study received a POCT, tests for IgA-tissue transglutaminase (IgA-TTG), IgA-endomysial antibodies (IgA-EMA), total IgA levels, and a duodenal biopsy. A total of 500 patients completed acceptability questionnaires, and the team compared inter-observer variability of the POCT results among five clinical staff for 400 cases. Group 1 included 1,000 patients. The team saw forty-one patients (4.1%) diagnosed with celiac disease. The sensitivities of the POCT, IgA-TTG, and IgA-EMA were 82.9, 78.1, and 70.7%; the specificities were 85.4, 96.3, and 99.8%. Group 2 included 61 patients. The POCT showed 100% sensitivity, but negative predictive value in detecting celiac disease in group 2. A majority of patients preferred the POCT to a blood draw (90.4% to 2.8%). A Fleiss Kappa coefficient of 0.895 reflected good inter-observer agreement on the POCT results. The POCT had comparable sensitivity to a blood test, and accurately spotted all celiac disease cases in a gluten sensitive group. But, because its low specificity may could cause further unnecessary tests, it’s not good enough to take the place of blood testing. It turns out that spotting celiac disease is only part of the battle. Making sure to rule out people who don’t have celiac disease is equally important. That’s why it’s important that any diagnostic test be both sensitive, to spot celiac disease, and specific, to rule out celiac disease in those who don’t have it. Until we get a PCOT with high enough sensitivity and specificity to make accurate celiac diagnosis and accurate elimination of those without celiac disease, the current blood testing regime will continue. Read more at: The American Journal of Gastroenterology; volume 113, pages1238–1246 (2018)
  4. Celiac.com 08/27/2018 - Imagine the difficulty of diagnosing celiac disease without the associated blood antibodies, with seemingly normal blood tests. Seronegative celiac disease is one of the most common causes of seronegative villous atrophy, so a biopsy is crucial in such cases, but it can be hard for doctors to justify a biopsy in the face of seemingly normal blood tests. How can researchers learn more? Seronegative celiac disease seems like a simple enough condition. It's just the presence celiac disease without the celiac-associated blood antibodies typically found in people with the disorder. Isn't it? Well, not exactly. For one thing, seronegative celiac disease is rare, and the little data that exist are contradictory. Some data has even indicated that seronegative enteropathies have lead to higher rates of death than standard celiac disease. Yet, seronegative celiac disease remains poorly defined, partly from an absence of consensus on an exact definition, and partly due to an imprecise use of specific celiac serology. Due to these factors, accurate celiac diagnosis can be extra difficult in patients with seronegative celiac disease. Even when doctors spot seronegative villous atrophy, they still need to exclude other enteropathies as a potential cause. To try to shed some light on the nature of seronegative celiac disease, a team of researchers recently set out to provide a critical summary of the most recent work on this topic, along with a working definition of seronegative celiac disease. The research team included A Schiepatti, DS Sanders, and F Biagi. They are variously affiliated with the Coeliac Centre/First Department of Internal Medicine, University of Pavia, Pavia, Italy, and with the Academic Department of Gastroenterology, Royal Hallamshire Hospital & University of Sheffield, UK. Finding an accepted definition of seronegative celiac disease is crucial in order to ensure that patients receive a correct diagnosis, and thus avoid inappropriate treatment, and the perils associated with long-term untreated celiac disease. Since cases of seronegative celiac disease are commonly dealt with individually, it is important to establish strict criteria for the diagnosis of seronegative celiac disease to ensure prompt identification and treatment of these celiac patients. Doing so will require further study, along with input from the scientific community. Source: Curr Opin Gastroenterol. 2018 May;34(3):154-158.
  5. I'm not exactly sure what to do at this point if what I am reading is correct. I don't want to go into too much detail right off the bat but I can tell you more if needed. I had an allergy test done, they messed up the first time and did a small panel, but my Whey Allergin, IgG came back as 32.20. Ref range: 0-88.60 mcg/mL In the notes it says "values less than 2.00 mcg/mL represent absent or undetectable levels of allergen-specific IgG anitibody. Values 2.00 mcg/mL and above indicate progressive increases in the relative concentration of allergen-specific IgG." This is where my doctor sent back for a full 96 allergy test, but he was concerned about any cross-reactivity due to the Whey results so he requested a Celiac panel as well. Everything on the food allergies came back as negative, besides some environmental allergies that were already tested previously and noted before. Could you please tell me your thoughts on the results? I think they might be negative. But if so, what do I do now? Should I request some other testing? Let it go? I would love to get some relief though and find out what is wrong with me. I fell like I have many of the symptoms that have been attached with Celiac disease. Not that I'm saying I would like to be diagnosed with something but if I were diagnosed it would make my medical history make much more sense. If you would like more detail on symptoms I can outline them. For Gluten Allergen, IgG, Casein Allergen, IgG and Whey Allergen, IgG (The Whey was the one on the first set of tests though) it says "Request Credited -- ORDINC; Test ordered incorrectly" Here are the results for Celiac Disease Panel: IgA - Result - Sufficient Gliadin IgA Ab - Result - 10.3 -- Ref Range - 0.0-14.9 Tis.Transglut.Ab IgA - Result - <0.5 -- Ref Range - 0.0-14.9 the notes section is not helpful at all. And I guess they didn't do the IgG so should I be asking them to do that? The doctor has to send it to a different lab than the one they use due to insurance. Thank you all in advance!
  6. Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud. Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions. According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests. SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company. Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added. Stay tuned for more new on how the Theranos fraud story plays out. Read more at azcentral.com.
  7. Celiac.com 07/03/2018 - The vast majority of celiac disease remain undiagnosed, and clinical testing is usually done on a case by case basis. Factor in vague or atypical symptoms, and you have a recipe for delayed diagnosis and unnecessary suffering. What determines who gets tested, and are current screening methods working? A team of researchers recently set out to assess the factors that determine diagnostic testing, along with the frequency of clinical testing in patients with undiagnosed celiac disease. The research team included I. A. Hujoel, C. T. Van Dyke, T. Brantner, J. Larson, K. S. King, A. Sharma J. A. Murray, and A. Rubio‐Tapia. They are variously affiliated with the Division of Biomedical Statistics and Informatics, the Division of Internal Medicine, at the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, Minnesota. For their case‐control study the team identified 408 cases of undiagnosed celiac disease from a group of 47,557 adults with no prior diagnosis of celiac disease. Their team identified undiagnosed cases through sequential serology, and selected unaffected age‐ and gender‐matched controls. They made a comprehensive review of medical records for indications for and evidence of clinical testing. Over time, people with undiagnosed celiac disease were more likely than control subjects to present with symptoms or conditions that invite testing. This study makes a strong case that current clinical methods are ineffective in detecting undiagnosed celiac disease. Accordingly, the researchers urge the development and adoption of more effective methods for detecting celiac disease. Source: Alimentary Pharmacology & Therapeutics.
  8. Celiac.com 07/02/2018 - We know from earlier studies that diagnosed celiac disease is more common in women than in men, but there isn’t much good data on sex-based differences in undiagnosed celiac disease. To address this discrepancy, Claire L. Jansson-Knodell, MD, and her colleagues at the Mayo Clinic, in Rochester, Minnesota, conducted a meta-analysis of studies that performed both a screening and confirmatory test that included either a second serological study or a small intestine biopsy, and that that provided clear and complete data regarding sex. According to data they presented at Digestive Disease Week 2018 in Washington, D.C., women are significantly more likely than men to have undiagnosed celiac disease, and the numbers are even higher for younger girls. In all, the researchers found 88 studies that met their inclusion criteria. These studies included data on nearly 300,000 patients. When they got done crunching the numbers, the research team demonstrated for the first time that women also had a higher rate of undetected celiac disease than men. When the team analyzed data from one subgroup focused on children, they found that rates of undiagnosed celiac disease were even higher in girls compared with boys. Timely diagnosis of celiac disease is important for preventing unnecessary suffering, and potential damage and disease associated with untreated celiac disease. In one recent case, a doctors found that a woman's psychotic delusions were caused by undiagnosed celiac disease and an adverse reaction to continued gluten exposure. Her condition improved quickly once she began a gluten-free diet. The research team says that their findings could change approaches to clinical screening, diagnosis and management of celiac disease. They also suggest that physicians might do well to increase their suspicion levels for celiac disease when evaluation women and girls. Source: Helio.com
  9. Celiac.com 06/27/2018 - Data shows that since celiac blood screening came into use, people with celiac disease are living longer, and dying of things not-related to celiac disease. With screening tests for celiac disease becoming more common, researchers suspected that milder cases of celiac disease coming to diagnosis might bring a reduced risk of mortality for celiac patients. However, there was no consensus for that opinion, so researchers Geoffrey K T Holmes and Andrew Muirhead of the Royal Derby Hospital, and the Department of Public Health for the Derby City Council, Derby, UK., recently set out to re-examine the issue in a larger number of patients for a further 8 years. For their study, the researchers prospectively followed celiac disease patients from Southern Derbyshire, UK, from 1978 to 2014, and included those diagnosed by biopsy and serology. For each patient, the researchers determined cause of death, and calculated standardized mortality ratios for all deaths, cardiovascular disease, malignancy, accidents and suicides, respiratory and digestive disease. To avoid ascertainment bias, they focused analysis on the post-diagnosis period that included follow-up time beginning 2 years from the date of celiac disease diagnosis. They stratified patients by date of diagnosis to reflect increasing use of serological methods. Total all-cause mortality increase was 57%, while overall mortality declined during the celiac blood test era. Mortality from cardiovascular disease, specifically, decreased significantly over time, which means that fewer people with celiac disease were dying from heart attacks. Death from respiratory disease significantly increased in the post-diagnosis period, which indicates that people are living long enough to have lung problems. The standardized mortality ratio for non-Hodgkin’s lymphoma was 6.32, for pneumonia 2.58, for oesophageal cancer 2.80 and for liver disease 3.10. Overall, celiac blood tests have lowered the risk of mortality in celiac disease. The number of celiac patients dying after diagnosis decreased by three times over the past three decades. Basically, people with celiac disease are living longer, and dying of things unrelated to celiac disease, which is good news. The researchers see this data as an opportunity to improve celiac disease survival rates further by promoting pneumonia vaccination programs, and more swift, aggressive treatments for celiac patients with liver disease. Source: BMJ Open Gastroenterology
  10. Sorry for the long post, I've been dealing with this forever and want to figure it out! Hi, I just got tested for celiac (blood test at a family practice (USA)) without knowing that I had to have been eating gluten regularly for it to show anything. I read forums here that said so, so I called the doctor's office before my test to ask if that was true, and they put me on with a nurse that said "I've never heard of that, but let me check the test we have....Oh, yep, it says to eat gluten. So just eat some bread before you come today." Seemed doubtful. I ended up NOT eating any gluten, and I've been actively avoiding wheat for at least 3 years (I noticed a gluten intolerance when I started college, my dad and uncle and 2 cousins can't eat it either). I was accidentally glutened with the tiniest bit of fajita seasoning from a restaurant 3 weeks prior to my blood test, but that's it. I didn't want to make myself sick with bread after reading that the blood test really only works if you've been eating it for weeks/months, so I went and got tested with basically non gluten in my system at all. The test itself said "negative." But I've attached a screenshot of my levels. After talking with the nurses on the phone twice, I'm convinced they know nothing about it. My antibodies were low/normal, probably because I haven't eaten gluten in years. (I sometimes drink beer made with barley instead of wheat because it doesn't give me horrible stomach cramps, but I hadn't had any in probably a month). The one thing that seemed "high" to me for someone who hasn't eaten wheat in years was the tTG IGA (I have no idea what that means). Mine said 7.2 U/mL (again, whatever that means). This family practice test says that a normal level is under 15 U/mL, but all my other levels are less than 1. After some research, I came across what "normal" levels should look like and Mayo Clinic suggested under 4.0 U/mL is negative for celiac (Source) [4.0-10 is a "weak positive"]. Like I said, I'm not very trusting that the practice I went to knows anything about celiac. I know if I want a diagnosis I should go to some specialist. But I really don't want to get put under just to be told "yep, do exactly what you've doing for years, avoiding gluten." So, I decided to sort of "self-diagnose" myself with celiac JUST to make myself be extra careful, you know, just in case my intestines are damaged whenever I get cross-contaminated food. My question is: does anyone else think it's possible I have celiac? Or am I being nuts? Recap & Symptoms: In 2014 I could barely eat anything in my house because I would be sick with horrible stomach cramps and constipation that would make me cry and have to stay home the next day. I lost weight then. Someone suggested going gluten-free, and I knew my dad was doing that because he had a couple passing-out episodes and similar gut pain. My uncle (dad's brother) also has a sever intolerance to gluten, like it gets him hospitalized because of malnutrition and cramping (I'm pretty sure he has celiac, but he's too stubborn to get tested). I tried avoiding gluten for a week and felt way better. Now I've been gluten free for years. Like I said before, though, I am not careful with barley and rye. Malt hurts me a lot, and when I take one bite of, say, a donut thinking it'll be worth it (I miss donuts..) it NEVER is. I'm out for two days after that. If I get glutened, I experience: fatigue, horrible cramps, gas (that won't pass), constipation (for days), foggy head, itchy skin, irritability, and my appetite fluctuates like crazy-- one minute I'm so full I can't think of food, another I'm starving.
  11. Hi everyone. Has anyone ever heard of a doctor ordering an endoscopy biopsy before doing a blood test? When I asked my GP for a celiac test she sent me straight to a GI doctor without doing any blood tests. The GI asked about all my symptoms and I litterally handed him the list (in addition to describing some of it). He immediately ordered an endoscopy with biopsies and a colonoscopy. After he left the room I realized he didn't mention blood work so I asked his nurse to ask him about it. She came back saying he said he would do it after. I'm actually fine with that because I've read horror stories of people with negative blood tests not being diagnosed for years. But I'm curious as to why he would choose to do it in that order. I can't find any stories or articles showing the biopsy preceding the blood test. Is it possible he saw all my symptoms and decided not to beat around the bush and just go for it? With that in mind, I had the endo and colonoscopy today (no turning back now). If the biopsies show celiac, will there be any reason for the blood test? Thanks, Kat
  12. Hi everyone, Back story: I was diagnosed with a borderline wheat allergy as a toddler, but the same allergist told my mother that spelt and Kamut (types of wheat) were ok to feed me. So, I have no idea how reputable that doctor was, and I’ve been eating wheat most of my life. I’ve got tons of issues because of it, and recently went to a gastroenterologist familiar with celiac to see if I needed to worry about complications developing or anything like that. He said I needed to do the gluten challenge and serology testing to find out whether I have Celiac, or gluten sensitivity with some other condition, before he could move forward. After much deliberation, I decided to do the gluten challenge, and I am currently two weeks in. I am miserable, worried it’s affecting my job stability, and struggling to get through my days. The doctor told me I could do the gluten challenge for a minimum of two weeks, but that I should really do it for a month if I can. I can’t. I’m going to try and get through a third week and then give up. Question: The doctor’s nurse told me to go in for the blood test 4 weeks after I stop the gluten challenge. I can’t find anything about waiting any length of time between the challenge and the serology. Does anyone have experience with this or know anything about that waiting period? Thanks for your time, Cassandra
  13. Hi I'm new to the forum and need some help please. I have had RA and Sjorens for over 6 years. Also anemic and while following that up they did a lower and upper scope and biopsies. The biopsy came back boarderline for Celiac disease. Bloos test was done and while waiting for that I started to do alot of research about the disease and seemed from what I read that the blood work would come back positive. Nope couldn't be that easy the blood work came back negative. So now I'm not sure which is the most accurate? I figure I should just follow that diet and see what happens but I have read it could take up to 2 years to see real results and doubt I could do that without an actual answer. Please help!!
  14. Hi Everyone, I am sure that this question has been asked multiple times but I am new to this forum as well as the Celiac world. I haven't been feeling like myself health-wise for a couple years now, with my stomach always being bloated, crampy, irritated, and just plain old not feeling well. I am a 20 year old nursing student so I had not had the time to focus on what the issue may be but I finally decided that I wanted to figure it out. I love pasta, but every time I ate it my stomach would expand to the size of a 5 month old pregnant woman and become rock solid I got tested for gluten sensitivity and the test came back as having high allergen gluten IgG levels. It says that the normal amount is less than 2.0 mcg/mL and my results read 6.4 mcg/mL. The doctor at my school said the only way to determine if this is Celiac is to get a biopsy and see a GI doctor. It's not easy for me to do that as I am a busy student, out of state. I was wondering if anyone knew if this was a good indication of Celiac or non-celiac gluten sensitivity. I know it is hard to determine from that one test but I'm looking for all the help I can get. Thank you! - Naomi Moore
  15. Hey there, I'm new! I've spent quite some time on this site reading up and thought I'd ask the experts. In end of November I started experiencing symptoms (toilet and gas focus) which in January really started escalating enough to send me to the doctor. I explained my symptoms and got a blood test and results about 10 days ago. My 'Deamidated Gliadin IgA was high at 31 U/mL (normal being <15) while the other results were all normal. Doc told me to go to GI for endoscopy, although stated this isn't a 'huge' increase. Meanwhile my symptoms started escalating to the occasional vomit, massive fatigue and feeling like I would collapse while walking to work. I'm reading a lot about this now (though still don't feel knowledgeable at all), and I'm wondering 1) does this number give any indication of celiac as a stand alone? No family history. 2) Is it possible that if it could be celiac, that it can happen so quickly? It just seems to be so sudden so I'm quite confused. I'm seeing the GI next week for next steps. It's just been a tough couple of weeks and I don't seem to get much help from the GP. Any tips would be appreciated!
  16. Celiac.com 01/22/2018 - Celiac disease is marked by HLA-DQ2/8-restricted responses of CD4+ T cells to gluten from wheat, barley or rye. Currently, in order to properly diagnose celiac disease based on serology and duodenal histology doctors need patients to be on gluten-containing diets. This is a problem for many people, who prefer not to begin ingesting wheat again once they have adopted a gluten-free diet. This can present challenges for doctors attempting to diagnose celiac disease. It is known that HLA-DQ–gluten tetramers can be used to detect gluten-specific T cells in the blood of patients with celiac disease, even if they are on a gluten-free diet. The team set out to determine if an HLA-DQ–gluten tetramer-based assay can accurately identify patients with celiac disease. The research team included Vikas K. Sarna, Knut E.A. Lundin, Lars Mørkrid, Shuo-Wang Qiao, Ludvig M. Sollid, and Asbjørn Christophersen. They are variously affiliated with the Department of Immunology, Oslo University Hospital – Rikshospitalet, Norway; the KG Jebsen Coeliac Disease Research Centre, University of Oslo, Norway; the Department of Gastroenterology, Oslo University Hospital – Rikshospitalet, Norway; the Department of Medical Biochemistry, Oslo University Hospital – Rikshospitalet, Norway; and with the Centre for Immune Regulation, Oslo University Hospital – Rikshospitalet and University of Oslo, Norway. For their study, the team produced HLA-DQ–gluten tetramers and added them to peripheral blood mononuclear cells isolated from 143 HLA-DQ2.5+ subjects. There were a total of 62 subjects with celiac disease on a gluten-free diet, 19 subjects without celiac disease on a gluten-free diet due to perceived sensitivity, 10 subjects with celiac disease on a non-gluten-free diet, and 52 seemingly healthy individuals as control subjects. The team used flow cytometry to measure T cells that bound HLA-DQ–gluten tetramers. They then used researchers blinded to sample type, except for samples from subjects with celiac disease on a gluten-containing diet, to conduct laboratory tests and flow cytometry gating analyses. They also conducted analysis on test precision using samples from 10 subjects. They found that an HLA-DQ–gluten tetramer-based test that detects gluten-reactive T cells identifies patients with and without celiac disease with a high level of accuracy, regardless of whether patients are on a gluten-free diet. This test could conceivably allow celiac diagnosis while suspected patients are still on a gluten-free diet. The team notes that their results require a larger study for validation. Could reliable celiac diagnosis be done without making patients consume gluten? Will that become common? Stay tuned for more developments. Source: Gastrojournal.org
  17. Hello Everyone! I had a blood test back in December and had an ultrasound on January 2nd. This was all due to some weight loss after having gallbladder surgery in 2016. I just chalked it up to not wanting to eating fatty foods afterwards and having smaller portions. I wasn't too concerned, since I felt way better (I was a bit overweight before the surgery.) I had a bit of abdominal pain, but I was told that was normal after surgery. My mother was concerned and so I went to my doctor with her. My doctor said I probably had Irritable Bowel Syndrome (as a side affect from the gallbladder) and ordered me to get some blood work and ultrasound done. The doctor's office called and said we needed to talk about my tests, the receptionist said it wasn't bad. This happened on the day of the ultrasound, so of course I was worried! I scheduled for an appointment with my new doctor the next day (old one sadly retired, had her since I was born). I was nervous that night, but just chalked it up to it not being that serious. Next day I go to the doctor's and she tells me how clear my ultrasound was and how there were no blockages. Few! Next, she told me how my blood work came back normal (cholesterol, iron, hormones, ect), I was so elated! But then, she told me I tested positive for Celiac's Disease. My happiness drained away in an instant, I hadn't heard of the disease before, but knew it wasn't good. She then told me what it was and how it could cause cancers. Next, she said I needed to have a biopsy done to confirm it. I was shocked and afraid. I had thought it was just a vitamin deficiency, nothing this bad. Currently, I'm waiting to get a biopsy done and am remaining on gluten. The thing is, I'm pretty scared! Cancer has run in my family. It killed my Grandmother, my Uncle, and recently my Aunt this past summer. I know celiac disease causes your rates for certain intestinal cancers to go up, and that has me worried right now. I'm afraid I'll have lymphoma when I get my biopsy done. So I was wondering if my ultrasound and blood tests being fine meant I didn't have it. Just having some clarification would make me feel all the better right now. I could really use some kind words and encouragement.
  18. Hello, I've been having a lot of stomach problems recently, so I thought to get tested for a few things including celiac disease. My results are interesting though. If anyone could give me insight on what this could mean please let me know! Picture attached with the blood test in question with doctor notes. Thanks
  19. Hi, I went to my GP with stomach pains, bloating, fatigue, numbness in hands/feet. They suggested a celiac screening, and my results are as follows: Immunoglobulin A (range 70-400 mg/dL) result: 237 (in range) Endomysial IgA Abs, IFA NEGATIVE result: NEGATIVE titer (in range) Transglutaminase Ab,IgA (range <15.0 U/mL) result: <0.5 (in range) Gliadin Deamidated Ab,IgG (range <15.0 U/mL) result: 0.5 (in range) Gliadin Deamidated Ab,IgA (range <15.0 U/mL) result: 18.6 High My GP suggested i see a Celiac specializing GI. I keep getting mixed messages online when I research what these results mean, and I couldn't get an appointment for a few weeks. Any suggestions/advice would be greatly appreciated! thank you!
  20. Hello, I need some advice. I have had a positive blood test for celiac. My doctor referred me to a GI specialist but my appointment is not until May (I live in Canada, so it is covered by OHIP but the wait times are ridiculous). I started the process of getting tested because of a rash on my elbows, knees, and bum. I have attached pictures of my knees and elbows (excluded my bum). My blood test results are also included. I am very certain that I am celiac. My question is, with the blood work and rash, would you wait until May to have an endoscopy done to confirm diagnosis or go ahead and cut gluten from your diet to alleviate symptoms? My rash is so itchy, it keeps me up at night. I have an 8 month old son who also keeps me up at night. Before I realized Celiac was a possibility, I thought I had brain cancer because of the brain fog/dizziness/memory loss. Once I googled my rash and other symptoms, and had the blood work done, it all makes sense with celiac. What would you do??
  21. Celiac.com 09/12/2017 - Are we at the beginning of the end for celiac disease? The last few years have seen numerous advances in celiac diagnosis and treatment. People diagnosed recently and in the future face a very different world than that faced by celiacs just five or ten years ago. In the old days, the process of properly diagnosing involved blood tests, endoscopies, and biopsies. In the near future, a simple blood test may do the trick. In the old days, the only treatment was a life-long gluten-free diet. That is still true, but the writing of change is on the wall. Here are five advances that will change the way celiac disease is diagnosed and treated in the future. These advances may well signal the beginning of the end of celiac disease as we know it. Blood Test Diagnosis (Without Biopsy) Researchers are getting better at identifying likely celiac cases using blood tests alone, without biopsy. As these techniques are refined and integrated into medicine, chances are pretty good that in the near future, large numbers of people will be diagnosed for celiac disease without the need for biopsy confirmation. Can Antibodies Spot Celiac Disease in Kids Without a Biopsy? Kids Can Get Accurate Celiac Diagnosis Without Biopsy Celiac Diagnosis Without Biopsy Can Be Useful in Some Cases Portable Gluten Detectors Imagine a future where you can take a bit of food you're not sure about, and pop it in a portable tester that will tell you if the food is gluten-free. A few years ago, that might have been the future of science fiction. With several companies looking to introduce just such kits, that future looks a lot more certain. Innovative Device Eliminates Gluten-Free Guesswork This Device Can Help Tell You If Your Food Is Actually Gluten-Free nimasensor.com Enzymes Enzymes that break down gluten might help people with celiac disease to enjoy a more normal life by protecting them from minor gluten contamination, and allowing them a bit more confidence when eating away from home. A number of manufacturers are currently working on enzyme treatments that are specifically designed to break down gluten for people with celiac disease. AN-PEP Shows Promise in Breaking Down Gluten in Stomach Enzyme Shows Promise In Dissolving Gliadin Peptides in Celiac Patients Could Carnivorous Plant Enzymes Act Like Beano for Gluten? Could Enzymes from Oral Bacteria Treat Celiac Disease Bio-Therapeutics—Hookworms They sound gross. The thought of having their guts infected with a parasitic worm makes people's skin crawl. However, researchers have documented the gut healing abilities of parasites like hookworm. When hookworms are introduced into the gut of people with celiac disease in the right amount, and kept at therapeutic levels, patients see their celiac symptoms disappear and their guts return to a healthy, normal condition. While still very much in the experimental phase, researchers are keen to investigate various strains and to determine the best therapeutic levels for these treatments. If all goes well, treatments based on parasitic worms will likely become more viable and more common in the future. Celiac Patients Tolerate Wheat Spaghetti After Hookworm Treatment Have Celiac Disease? Try a Little Hookworm with that Pasta! Can Bloodsucking Parasites Help Treat Asthma and Celiac Disease? Controversial Pig Parasite May Soon Be Sold In Germany To Treat Disease Bio-Therapeutics—Fecal Transplant Could fecal transplants be used to cure or to treat celiac disease? Much like hookworms, once you get past the 'yuck' factor, fecal transplants are proving to be cheap, easy, reliable way to treat gut conditions like C-Diff and, possibly celiac disease. The idea is to get some healthy poop in your gut to inoculate it with beneficial microbes. The effects are nothing short of astonishing. As they are studied, developed and refined, look for bio-therapeutic approaches like fecal transplant to play a role in treating gut contains like celiac disease. A Case of Refractory Celiac Disease Cured By Fecal Microbiota Transfer Vaccine A vaccine against celiac disease would be a holy grail of sorts. Receive a dose, or maybe multiple doses over time and become immune to the adverse effects of gluten. Several companies are working on a vaccine that would basically eliminate celiac disease. Many of these have moved through the early trial phases and several have shown enough promise to move to trials in humans. This is a very exciting area of research that may pay huge dividends in the near future. Celiac Disease Vaccine Set to Begin Full Human Trials Would You Try a Vaccine for Celiac Disease? Celiac Vaccine Clears First Big Clinical Trial This Vaccine Could Be a Game-Changer for People with Celiac Disease The main takeaway from these developments is that we are now living in an age where the diagnosis and treatment of celiac disease is the focus of tremendous research and development on numerous fronts. Many of these will likely result in products, tests, or treatments for celiac disease that were unimaginable just 5 or 10 years ago.
  22. Hey guys, I will try and keep this as short and concise as I can. About a year ago, I had a very long day at work and ate a lot of chicken wings and a very poor diet. The next week, I felt terrible. I head headaches, GI issues, fatigue and some muscle aches and nasal congestion. I thought it was just a stomach bug, but a cycle of this sickness continued throughout the whole summer. Basically every other week I would be sick with fatigue, headaches, nausea, GI issues and I felt feverish and nasal congestion. I finally went in for blood work (CBC, vitamin and mineral levels were tested) and everything came back normal. I was perscribed a probiotic and it didnt help. A couple months later, I went in for a colonoscopy and an endoscopy and tested negative for Celiacs and just had mild acid reflux. I still stopped eating gluten since January and felt better. However, there were still times that I felt "crappy" again. This could have been from cross contamination or me just eating gluten. But basically, I came home from college and I felt great for about 6 weeks. Then, I accidentally ate Ragu sauce that was not gluten free and I felt crappy again with feverish feeling, headaches, fatigue, nasal congestion and diziness. Ever since then, I have felt "crappy" 3 seperate times. Two weeks ago, I ate meatloaf twice with bread crumbs and a whole beer (which i knew was gluten). A couple days after I ate the meatloaf, I started to get headaches and the past couple days (about a week after drinking the beer) have been terrible with bad headaches, body aches and feverish with nasal congestion again (so ive been sick for about 12 days in a row now) I am scheduled to go in to see an allergist in about a month..... 1) What tests should I ask for? I think that I have a gluten intolerance or a sensitivity..... 2) Do my symptoms match up with a person with a gluten intolerance? THANK YOU FOR READING THIS WHOLE THING. I REALLY NEED AND APPRECIATE THE HELP!!!
  23. Hello everyone. In a nutshell: I'm being tested tomorrow and I'd like to know exactly what to ask for. I know the phrase "full celiac panel", but is there more technical talk I can use to ensure the doc tests thoroughly? long story: (I'm typing on a phone, so won't get into too much detail!) I'm 40. I've had stomach and digestive issues since I was a young teenager. Bloating after meals, constant constipation. Over the counter meds for the C never helped. Once I would finally be able to go there would be loose stools, but not exact D. Ive had chronic anemia since I was a teenager. It was blamed in heavy periods, but even when those would level out a bit I could never really get much footing with my iron counts. A few years ago my iron level dropped to 6, ferritin was 2. Hair loss, fatigue, depression, anxiety, are all the constant backdrop to my life - which has often been attributed to anemia. Oh, vitamin D is also always low despite being outside quite a bit and taking supplements fir years and years. Over recent years I've restricted my diet a lot. Never suspecting Celiac. I just came to know that eating "light" felt better. I've subbed corn for flour products, cut out crackers, etc. still far from gluten-free, but it was obvious that cutting back in bready things and pasta and the like agreed with me. i don't know how it struck me recently, but a lightening bolt hit me that the one thing all my "bad foods" had in common was gluten. So on a lark I cut it out. Three days later my belly was flatter than I can ever remember it being. I was also comfortable (though still constipated), I felt light and cheerful and my mind felt very sharp. I had abundant energy and felt worlds better than I can ever remember feeling. Honestly, I was FLOORED. This went on for a few more days of me feeling on top of the world for the first time in my whole adult life. Only then did I read up on what all the symptoms of celiac can be and it was practically autobiographical. So I see you have to be in a gluteny diet for testing. At this point I was gluten-free for only a week. I made an appointment and requested to be tested. That appointment is tomorrow. I've been back on the gluten train since Tuesday evening and I'm miserable. I've probably been overdoing it, having about 3-4 servings a day. I look pregnant and feel ready to pop. Do you all think the testing should be fine despite that one week of gluten-free? The doc thought it would be okay, as long as I started eating it again in the meantime (3 days). Ive always assumed I had IBS, so this new possibility is overwhelming. I imagine that I'll be giving up gluten after testing either way bc the relief I felt during my tiny trial was emmense. Something else gnawing at me is the symptom of pale yellowish stool. While that is not something I experience, one of my children does.
  24. I have been having on and off stomach aches for about a year. I get frequent gas, bloating, urge to go poop, and my stomach almost always hurts in the lower part, like where my belly button is. I went to the GI last month and he ordered some lab tests and an upper GI. The upper GI came back negative. The lab tests tested for Celiac disease, and three of them came back negative except for the t-Transglutaminase (tTG) IgG. My result was a 6 (weak positive), normal being from 0 - 5. My Immunoglobulin A also came back low (51), with a normal level being from 87 - 352. I read about Immunoglobulin A deficiency and saw that people who are deficient are more likely to have celiac. I also read that people with celiac and IgA deficiency could have skin rashes, and I also have eczema. I'm going to do an endoscopy next month, but I was wondering if it is likely that I would have gotten a false positive since my result was just barely positive?
  25. Hello, I'm hoping someone will be able to help. The short question is on how to convince my doctor of (or research on) the need for an endoscopy with negative blood work results... The background: I'm in my late 30s, w annoying/severe digestive discomfort for more than a decade, which a GI a few years ago semi-diagnosed as IBS without doing any real investigation. More recently I've had debilitating fatigue, severe anxiety, and several other symptoms, and recently realized it could be celiac when talking to a friend who'd been diagnosed in his 40s last year. My regular dr is usually quick and thorough in ordering tests. I asked her for celiac tests about 3 months ago, and they came back negative (the panel included: Deamidated Gliadin peptide Ab IgG, Tissue Transglutaminase Ab IgA, and total IgA). At that point, I was so sick, didn't know when her referral to the GI would go through, and so decided to try going gluten-free. It's been a huge, dramatic change. I know that I shouldn't have stopped gluten before the full testing process, but I have a small child and had just gotten so fed up with being sick and didn't know whether it would be months and months longer to see GI. Finally saw GI last week. Talked to her resident for some time, then she came in and immediately told me I have IBS, that there is absolutely no way I could have celiac with negative blood work. I knew that wasn't true, and I stood my ground, but she was dismissive and arrogant and completely refused to order a scope (and said that in her hospital it would be a 6 month waiting time anyway). I've been glutened a couple of times since going gluten-free 10 weeks ago and was far sicker than when eating gluten all the time, and for a week each time. Definitely can't do a gluten challenge. So my problem is this: the GI said that my regular dr can order me an endoscopy, although it's not yet clear whether it'll be covered (I'm in Canada), but my reg dr is reluctant because she's deferring to the GI's opinion. She was open to ordering the scope if my genetic tests were positive, but getting the results is weeks away. Basically, I want an endoscopy asap because in many places I've read that damage can take longer than 10 weeks to go away, but I don't want to wait months and have evidence gone. Does anyone have any research they could point me to illustrate the need for endoscopy w negative blood work? (I really like my reg dr for everything else, so don't want to change to a different one, and the GI appt took months to get, so finding another one isn't exactly an option right now because of the window of time since I stopped gluten.) In some ways I'm ok with having no diagnosis, since going gluten-free has literally given me hope that I didn't think I'd ever have, but I also have reasons (including my child's health) for wanting to know definitively... Also, should I have also gotten ttg igg and Deamidated gliadin iga? The GI dr offered to do EMA now, but with a gluten challenge which I physically cannot do... Many thanks!!
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