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Found 43 results

  1. Hello all! Lab results came in and of course Dr not available until next week. I did some research but so many sites with so much information, and I am feeling overwhelmed. Here are the results: Immunoglobulin A, Qn, Serum 156NORMAL t-Transglutaminase (tTG) IgA 6HIGH Endomysial Antibody IgA Positive Thank you in advance for any input and guidance!
  2. Hi all, I'm new to the forum so I'm really hoping someone will be able to help. I've been having digestive issues for the past 2 years and have lost nearly 4 stone in weight. All of my symptoms suggest celiac disease, I not only have digestive issues, bloating ect but my upper arms are covered in a rash, obviously the weight loss and then I'm also constantly anaemia and I now have low vitamin D levels along with depresssion, anxiety, constant headaches, tiredness, stomach pain ect. I know these symptoms could suggest a number of issues but I have noticed once I've stopped eating gluten products my symptoms seem to at least lessen. I've asked the doctor what he suggests and he does think it is likely but i'm struggling to be put forward for further testing. I'va had countless generic blood tests but obviously this isn't enough to diagnose if I have it or not. I'm honestly losing my mind with not only feeling so ill but also not knowing what exactly is wrong with me. Should I just try a gluten free diet and see if my symptoms continue to improve or what?
  3. Celiac.com 02/01/2018 - To make a clinical diagnosis of celiac disease, doctors use serological testing for IgA antibodies to human tissue transglutaminase (anti-tTG) which indicate celiac disease autoimmunity. However, some tests are more highly sensitive for anti-tTG, while other tests are highly specific. So, is combining two tests a reliable strategy for screening for celiac disease in clinical practice? A team of researchers recently compared the performance of three kits used to diagnose celiac disease, and evaluated the point prevalence of celiac disease autoimmunity in a South Indian urban population. The research team included G Venugopal, J Mechenro, G Makharia, A Singh, S Pugazhendhi, R Balamurugan, and BS Ramakrishna. They are variously associated with the SRM Institutes for Medical Science, Jawaharlal Nehru Salai, Vadapalani in Chennai, India, the SRM Medical College Hospital and Research Centre, Kattankulathur, India, the All India Institute of Medical Sciences, Ansari Nagar, New Delhi, India, the Kansas University Medical Center, Kansas City KS, USA, the Indian Institute of Technology, Samantapuri, Bhubaneswar, India, the SRM Institutes for Medical Science, Jawaharlal Nehru Salai, Vadapalani, Chennai, India, and with the SRM Medical College Hospital and Research Centre, Kattankulathur, India. For the first part of their study, the team performed anti-tTG testing on sera from 90 patients with documented celiac disease and 92 healthy controls using three different kits. They then tested one thousand nine hundred and seventeen healthy adults residents of the Vellore and Kancheepuram districts for celiac disease autoimmunity using a sequential two-test strategy. Based on these results, the team suggests that using first a highly sensitive test for anti-tTG followed by a highly specific test is a reliable strategy for screening for celiac disease in clinical practice. Source: Indian J Gastroenterol. 2017 Dec 22. doi: 10.1007/s12664-017-0803-z.
  4. Celiac.com 09/11/2017 - The FDA has granted clearance for Immco Diagnostics' ELISA for celiac disease, and for Roche's Benchtop Analyzer. What does that mean? Immco's test is conducted as a solid phase immunoassay and is intended for the qualitative or semiquantitative detection of IgA or IgG antigliadin antibodies in human blood, and thus to aid in diagnosing patients with celiac disease or dermatitis herpetiformis in conjunction with other laboratory and clinical findings. In other important diagnostic news, a benchtop analyzer from Roche Diagnostics and an immunoassay system from Shenzhen New Industries Biomedical was among the instruments and tests cleared by the US Food and Drug Administration in July, according to the agency. The FDA granted 510(k) clearance to Roche's Cobas b 101 instrument platform, as well as the Cobas HbA1c test. The fully automated and self-contained Cobas b 101 uses a single-use reagent disc to measure HbA1c from capillary and/or venous whole-blood samples, according to a document filed with the FDA. The Cobas HbA1c is an in vitro diagnostic test for detecting the presence of glycate hemoglobin, which develops when hemoglobin joins with glucose in the blood, becoming 'glycated'. By measuring glycated hemoglobin (HbA1c), clinicians are able to get an overall picture of what our average blood sugar levels have been over a period of weeks/months. For people with diabetes this is important as the higher the HbA1c, the greater the risk of developing diabetes-related complications. The HbA1c assay is designed for use with the Cobas b 101 platform, which is not a portable home test, but is intended for a clinical laboratory or point-of-care setting. Other instruments receiving FDA clearance in July include a new flow cytometer from Becton Dickinson; an expanded version of Bruker's MALDI Biotyper; and expanded indications for BioMérieux's Vitek MS MALDI-TOF Mass Spectrometery System. The FDA recently cleared the Maglumi 2000 automated immunoassay analyzer from Shenzhen New Industries Biomedical, which uses chemiluminescent technology for running IVD tests on clinical serum samples. The firm's Maglumi 2000 TSH assay for the quantitative determination of thyroid-stimulating hormone in human serum also received 510(k) clearance. The assay is for diagnosing thyroid disorders. These are just a few of many new tests and analysis devices that are changing the way doctors diagnose and manage celiac disease, diabetes, and other diseases. Look for tests like this to have a profound influence on the way diseases are diagnosed and managed in the future. Read more: 360dx.com
  5. Celiac.com 08/21/2017 - Can a tiny Virginia start-up change the world with a cheap, reliable devise to test food for gluten on the fly? With their startup called Altede, Ed and Anna Champion, together with business partner Briana Petruzzi, hope to build quick, cheap tests for all sorts of food allergens. Their first target is gluten. Altede is looking to develop a test that is reliable, sensitive to FDA levels of 20ppm gluten, costs less than $5 and could be performed within a couple of minutes while sitting at a restaurant table. The Altede team doesn't expect anyone to test everything they eat. But those with severe gluten intolerance might find peace of mind in a pinch. "We really want to keep the cost low. We think that's going to be critical," says Ed Champion. "You know, $15 and you're not going to do it. It's going to be too painful. But $3 or $5…what's your afternoon worth?" Altede has developed an antibody that they grow inside of and later extract from mice, a technique also used by pregnancy test manufacturers. The antibody is specially engineered to latch onto protein molecules inside gluten. A user like Anna Champion would carry the kit, which is about the size of a pack of M&M's. When she comes across a food she wants to eat but suspects may make her sick, she puts a pea-sized sample into a liquid container that comes inside the pouch. She would shake it up and then dip the test strip. The liquid would creep along the paper, passing a stripe of the antibodies Altede designed. If gluten is present, the antibodies will latch on to the proteins, accumulate on the paper and produce a visible pink line. So far, their prototype device can detect small amounts of gluten. The prototype looks and operates just like a pregnancy test. But the test currently takes hours, instead of minutes. Ed Champion says that tweaks to the chemistry will provide quicker results, though there are still a number of technical challenges to overcome. But after two years of development, Champion says the team is getting close. To help the, prepare their portable gluten tester for a product launch, Altede recently enrolled in the first cohort of RAMP, Roanoke's business accelerator, and received a $50,000 grant from the state's Commonwealth Research Commercialization Fund. Once the company can quickly and reliably test for gluten, it will use the same technology to build tests for a number of different food allergens. Champion has invested more than $30,000 in the venture to date. He supplies the business knowledge for the company, while Anna Champion, a Virginia Tech researcher, and Petruzzi, a Ph.D. student, are the scientific brains behind the operation. Stay tuned for updates on Altede and their efforts to build a better gluten test.
  6. Celiac.com 06/28/2017 - Tests to measure serum endomysial antibodies (EMA) and antibodies to tissue transglutaminase (tTG) were developed to screen for celiac disease in patients who are actively eating gluten. However, doctors often use them to monitor patients on a gluten-free diet. Now, making sure celiac patients are successfully following a gluten-free diet is important, as unconscious gluten ingestion can lead to complications over time. But how accurate are these tests for assessing gluten-free compliance in celiac patients? A team of researchers recently set out to assess the sensitivity and specificity of tTG IgA and EMA IgA assays in identifying patients with celiac disease who have persistent villous atrophy despite a gluten-free diet. The research team included Jocelyn A. Silvester, Satya Kurada, Andrea Szwajcer, Ciarán P. Kelly, Daniel A. Leffler, and Donald R. Duerksen. They are variously affiliated with the Farncombe Family Digestive Health Research Institute and Division of Gastroenterology, and the Department of Pathology and Molecular Medicine and Department of Medicine, McMaster University, Hamilton, Ontario. To begin their meta-analysis, the team searched PUBMED, EMBASE, BIOSIS, SCOPUS, clinicaltrials.gov, Science Citation Index, and Cochrane Library databases through November 2016. They included studies of subjects with biopsy-confirmed celiac disease, follow-up biopsies and measurement of serum antibodies on a gluten-free diet, biopsy performed on subjects regardless of symptoms or antibody test results. Their analysis excluded patients with refractory celiac disease, undergoing gluten challenge, or consuming a prescribed oats-containing gluten-free diet. They determined positive or negative findings based on manufacturer cut-off values. They defined villous atrophy a Marsh 3 lesion or villous height:crypt depth ratio below 3.0. They constructed forest plots to determine the sensitivity and specificity of detection for individual studies. For their meta-analysis, they used a bivariate random effects model to determine both sensitivity and specificity. Their search of abstracts revealed 5,408 unique citations, which yielded 442 articles for detailed review. Those reviewed articles yielded just 26 studies that met the team’s inclusion criteria (6 of tTG assays, 15 of EMA assays, and 5 of tTG and EMA assays). Inability to cross-tabulate histologic and serologic findings was the most common reason the team excluded a given study from analysis. They found that serum assays identified patients with persistent villous atrophy with high levels of specificity: 0.83 for the tTG IgA assay (95% CI, 0.79–0.87) and 0.91 for the EMA IgA assay (95% CI, 0.87–0.94). However, the tests showed low sensitivity for detecting villous atrophy: 0.50 for the tTG IgA assay (95% CI, 0.41–0.60) and 0.45 for the EMA IgA assay (95% CI, 0.34-0.57). Results were similar in both pediatric and adult patients. A meta-analysis of biopsy-confirmed celiac patients who received follow-up biopsy while on a gluten-free diet, showed that tests for serum tTG IgA and EMA IgA had low sensitivity, detecting persistent villous atrophy less than 50 percent of the time. The team supports the search for more accurate, non-invasive, markers of mucosal damage in celiac patients who follow a gluten-free diet. Source: Gastroenterology. DOI: http://dx.doi.org/10.1053/j.gastro.2017.05.015
  7. Celiac.com 02/17/2017 - In recent tests, researchers found that microwave treatment (MWT) of wet wheat kernels caused a striking reduction in R5-antibody-based ELISA gluten readings, reducing the readings to under 20 ppm, so that wheat could theoretically be labeled as gluten-free. However, the actual gluten content of the wheat remained unchanged. Just the test reading changed. The research team included C Gianfrani, G Mamone, B la Gatta, A Camarca, L Di Stasio, F Maurano, S Picascia, V Capozzi, G Perna, G Picariello, A Di Luccia. They are variously affiliated with the Institute of Protein Biochemistry, CNR, Naples, Italy, the Institute of Food Sciences, CNR Avellino, Italy, the Department of the Sciences of Agriculture, Food and Environment at the University of Foggia, Italy, the Institute of Food Sciences, CNR Avellino, Italy; Department of Agriculture, University of Naples, Portici (Na), Italy, the Department of Clinical and Experimental Medicine, University of Foggia, Foggia (Italy) and National Institute of Nuclear Physics, Section of Bari, Italy, and the Department of the Sciences of Agriculture, Food and Environment, University of Foggia, Italy. The failure of R5 Elisa to register gluten in MWT stands in stark contrast to analysis of gluten peptides by G12 antibody-based ELISA, mass spectrometry-based proteomics, and in vitro assay with T cells of celiac subjects, all three of which gave consistent results both before and after MWT. As to what caused the R5 Elisa to misread the MWT samples, an SDS-PAGE analysis and Raman spectroscopy showed that MWT reduced the alcohol solubility of gliadins, and altered the access of R5-antibody to the gluten epitopes. Thus, MWT neither destroys gluten nor modifies chemically the toxic epitopes, this contradicts claims that MWT of wheat kernels detoxifies gluten. This study provides evidence that R5-antibody ELISA alone is not effective to determine gluten levels in thermally treated wheat products. Gluten epitopes in processed wheat should be monitored using strategies based on combined immunoassays with T cells from celiacs, G12-antibody ELISA after proteolysis and proper molecular characterization. Source: Food Chem Toxicol. 2017 Jan 12;101:105-113. doi: 10.1016/j.fct.2017.01.010.
  8. 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
  9. being new to this, I have started avoiding gluten and dairy. I seem to be sensitive to other foods like corn, tomatoes, bananas, and possibly grains and sugars. I still get puffy in the face whenever I eat certain things. other than blood testing, does any meds help with this? Also, is gas X gel tablets ultra strength gluten free?
  10. Hello, I have been reading a lot of posts while waiting for some of my test results to come back. So thankful for the information I have found so far! I have completed my blood tests and other lab work. Complete allergy tests came back positive for all in the bread/cereal profile. One of the gene tests for Celiac came back positive and one other test came back high, even though I was not eating Gluten at the time of my lab work. Back eating a small amount of gluten daily and have CT Scan and biopsy appointments scheduled for the near future. I was wondering if anyone else is where I am as far as the testing. I have had quite a few symptoms return quickly after going back to eating gluten. The next day I had a migraine headache for the entire day, went to sleep and woke up with another headache that wasn't quite as bad. Prior to my appointment, I was only gluten free for 2 months and was really starting to feel great. Three days into eating gluten stomach cramps returned. Also on a Low FODMAP diet. Unfortunately had to go back to eating it for the biopsy test. Please reply if you are in the same spot as me as far as testing for Celiac. Thanks, Sheila
  11. Celiac.com 12/24/2015 - Laboratory tests for hemoglobin, ferritin, calcium, folate, vitamin B12, vitamin D, and thyroid function are regularly ordered in children with celiac disease, despite sufficient evidence for their necessity. To determine the frequency of nutritional deficiencies and levels of thyroid dysfunction in children with celiac disease, researches conducted a study that examined children before and after the initiation of a gluten-free diet. The research team included Margaretha Maria Susanna Wessels, MD, Iris I. van Veen, MD, Sabine Lisa Vriezinga, MD, Hein Putter, PhD, Edmond Henri Herman Maria Rings, MD, PhD, and Maria Luisa Mearin, MD, PhD. They are affiliated with the Department of Pediatrics, Department of Statistics, and the Department of Pediatrics, Erasmus University Medical Center, Sophia Children's Hospital, Rotterdam, The Netherlands. For their study, the team evaluated test results for hemoglobin, ferritin, folate, vitamin B12, calcium, vitamin D (25[OH]D), free thyroxin, and thyroid stimulating hormone of children with celiac disease regularly seen at the Leiden University Medical Center between 2009 and 2014. The team used laboratory reference ranges to define abnormal results. For statistical analysis, they used Pearson χ2 test for trend, unpaired t test, and 1-way ANOVA. Their results for 182 children evaluated, showed 119 were newly diagnosed. About 17% of results were missing for any given year, due to incomplete blood results. The most common deficiencies at the time of celiac diagnosis were iron deficiency, found in 28% of celiac patients, vitamin D deficiencies in 27%, and folate deficiency, in 14%. They also saw iron deficiency anemia in 9%, and vitamin B12 deficiency in 1% of celiac patients. They saw no hypocalcemia or thyroid dysfunction. At follow-up, they observed iron deficiency, iron deficiency anemia, and folate and vitamin D deficiency 8%, 2%, 3%, and 25% of patients, respectively. They found no vitamin B12 deficiency, hypocalcemia, and thyroid disease. From these results, the team concluded that complementary blood investigations are relevant at the time of celiac diagnosis, but have little follow-up use, once the patients adopt a gluten-free diet. They recommend that such tests be conducted only if there is a clear physical issue, such as fatigue or abnormal growth. Source: Journal of Pediatrics. DOI: http://dx.doi.org/10.1016/j.jpeds.2015.09.078
  12. Celiac.com 09/01/2015 - Current medical guidelines recommend routine screening of liver function tests (LFTs) in patients diagnosed with celiac disease. However, there isn't much good data on rates of liver disorders in celiac disease outside of Europe. A team of researchers recently set out to accurately estimate rates of LFT abnormalities in celiac disease in the USA, and to assess the effect of a gluten-free diet on LFTs. The research team included Natalia E Castillo, Rohini R Vanga, Thimmaiah G Theethira, Alberto Rubio-Tapia, Joseph A Murray, Javier Villafuerte, Alan Bonder, Rupa Mukherjee, Joshua Hansen, Melinda Dennis, Ciaran P Kelly and Daniel A Leffler. To identify adult patients with biopsy-proven celiac disease, they used a prospectively maintained database, which they matched with healthy controls. They defined abnormal LFT levels for women and men based on the Third National Health and Nutrition Examination Survey (NHANES III) criteria. The team gathered data on demographics, coexisting liver diseases, and laboratory work-ups including aspartate transaminase (AST) and alanine transaminase (ALT) values at the time of diagnosis and on a gluten-free diet. They later compared data from this group with data from 7,789 individuals participating in the National Health and Nutrition Examination Survey, 2009–2010, and applied univariate logistic regression, Wilcox on signed-ranks, Student's t-test, χ2, and Fischer's exact test for statistical analysis. In 463 celiac disease patients with ALT or AST levels at the time of celiac disease diagnosis, 40.6% had elevated LFTs compared with 24.2% of treated celiac disease patients (P<0.001). Similarly, nearly forty percent of celiac disease patients on the NHANES database showed abnormal ALT values compared with less than twenty percent of non-celiac patients (P=0.03). Just over forty percent of individuals will show elevated LFTs at celiac disease diagnosis, but the vast majority, nearly eighty percent of those patients will show normal LFTs within a year and a half of adopting a gluten-free diet. The team suggests that doctors check all celiac patients for LFTs, and coexisting liver disorder be considered in patients whose LFTs have not improved within a year on a gluten-free diet. Source: The American Journal of Gastroenterology 110, 1216-1222 (August 2015). doi:10.1038/ajg.2015.192
  13. Celiac.com 08/26/2015 - People with IgA antibodies to tissue transglutaminase (anti-tTg) likely have a higher risk for celiac disease. Some clinicians and researchers have suggested that common multiples of the upper limit of normal (ULN) be useful tool in improving diagnostic pathways, as well as continuity between tests. However, a new study suggests that both sensitivity and specificity of tests for IgA antibodies to tissue transglutaminase vary widely by individual kit, and that their test values are not easily commutable using common multiples of the ULN to correct for inter-assay variations. Commutability just means the ability to make sure that two different tests really are equal. If results of different tests are commutable, it means that they are equal. In this case, the term applies to test results for various representative samples from healthy and diseased individuals. For the study, the research team recently looked at the use of immunoassays for the detection of IgA antibodies to tissue transglutaminase, and also sought to better understand of the significance of multiples of the upper limit of normal and inter-assay correlations. The research team included B.B. Suh-Lailam, K.W. Davis, and A.E. Tebo. Using indirect immunofluorescence assay (IFA) as reference, the team assessed characteristics of four anti-tTG IgA assays relative to endomysial IgA (EMA). They also assessed commutability between anti-tTG immunoassays and/or EMA based on manufacturer's recommended cut-off values and three common multiples of ULN (3×, 5× and 10×). To do this, they analyzed samples from 200 patients and 100 healthy individuals. They found that, at manufacturer's cut-off, the sensitivities for the tTG assays ranged from 72.5% to 98.6% and specificities from 60.3% to 99.2%. The percent positive agreements between any anti-tTG and EMA or any two anti-tTG immunoassays varied from 56.7% to 98.0% and 46.7% to 100.0%, respectively. At 3×, 5× or 10× ULNs, the inter-rater reliability as measured by Cohen κ between any two anti-tTG assays were quite variable and ranged from 0.28 to 0.96, 0.26 to 0.89 or 0.13 to 0.78, respectively. Furthermore, the percent positive agreements between any two anti-tTg IgA immunoassays ranged from 83.1% to 98.2%, 92.0% to 100%, or 100%, at 3×, 5× or 10×, respectively. Hence, the team's basic takeaway that result parameters for tTG IgA immunoassays or tTG IgA and EMA vary by kit, and thus common multiples of the ULN are not enough to correct for variation between tests. Source: Clin Chem Lab Med. 2015 Jul 14. doi: 10.1515/cclm-2015-0348.
  14. I am 49 female and I think I am about to lose my mind. Have had GI symptoms for several months, nausea and stomach pain after eating and constant diarrhea for no good reason. Recently dx with type 2 diabetes and controlling with diet and A!C down significantly since dx due to change to diabetic diet and then I get this recurring rash which I had exactly a year ago and I have patches of blisters on my knee foot, face, ankle and several fingers and toes and it itches like crazy and the pictures on the internet of DH look exactly like what I have except mine is less severe but it is spreading. My face feels sunburnt and under my eyes are all red and puffy and my eyelids are swelling. Even my ears feel red and hot and I have patches of red in my eyebrows even. My nose is also completely red and I have several lesions on my face. Made apt with family dr but not the one I normally go to bc he was out into March and I can't wait or handle this itching until then. The one I am seeing is a little jerk but of course had availability and I have dx myself anyway. With all those symptoms I am pretty sure I have celiac. Question is if he won't order blood work or biopsy of skin I will have to go see a specialist and from all the reading U of C in Chicago has a great department for this and it is an hour from where I live in Indiana so I can go there. I figure tho it will take several weeks to get in there so in the meantime what do iI do. If I go gluten-free now and/or convince Dr. Jerk to give to Dapone will my test results be inaccurate or falsely negative bc I have been gluten-free and taking the medication for a while? I want an accurate dx and I just have to ask this Dr. Jerk to do what I want and hope I can get in fast at UC So questions is what to do before get to UC and Is UC as good as it appears to be from my reading. If Dr. Jerk won't give me any blood work orders, biopsy or even Dapone what else can I do to combat the rash but also have correct results and UC? Any help is appreciated. I am so upset and can't work like this and well you all know the story, I will lose my business and my house and everything. PLEASE HELP I NEED ADVICE!! Thanks. Crystal. The main thing I need is just for this itching and burning to go away !!
  15. Hello, I received my celiac test results today, and my doctor wasn't very helpful in explaining any of it. I have an appointment with a GI in a couple weeks, but was hoping to get some insight before then. My doctor said I was positive for celiac, which kind of surprised me because I have not had an endoscopy. As background, my daughter has celiac disease, confirmed with an endoscopy. I eat mostly gluten free at home, but have been trying to eat gluten in the weeks leading up to my test. I am not sure if I ate enough gluten, though. Some days I would eat a slice of regular bread, or maybe a handful of pretzels, or some crackers with gluten. If I was at a restaurant, I would order a regular meal with gluten (such as a hamburger with a bun), but I don't go out often. Here are my test results: tTG IgA <1.2 (negative <4) tTG IgG 23.8 (Positive >9) The comment after this one said, "tTG antibody, especially the IgA, is sensitive and specific for untreated Celiac Disease. The IgG assay is used mainly to detect celiac patients who are IgA deficient. Verified my repeat analysis." However, looking at my IgA level below, it doesn't seem as though I am IgA deficient, right? Gliadin Ab, IgA (DGP) 3.7 (negative <20) Gliadin Ab, IgG (DGP) 2.2 (negative <20) IgA 166 (range 71-397) Is it odd that my IgG levels were positive on one test and negative on the other? Should I eat lots more gluten before my next appointment?
  16. Hi all....I'm desperate for any advice, suggestions and experiences which might help me solve my issues and diagnosis....a very wise bird (she knows who!) suggested posting to ask the advice of expert...you all...... So after several months of being desperately unwell.....main one being complete exhaustion...(couldn't move, function or think..,) and entirely unlike me as I work FT in a demanding and stressful job with a young family......I had some blood tests.... My bloods were all wrong. Low platelets, white cells etc..... Had more tests inc for celiac disease..... Thy came back off the scale for TTb IGa as over 300. But ema Iga negative. Sent for endoscopy. Endoscopist said def celiac disease with TTG IG off the scale like that. Back at docs last week as ESP unwell post endoscopy couple of days before....more bloods. Told today by receptionist B12 too low (161.......) and need it repeated and an appointment with doc. Doc tried to ring later but missed call. Receptionist said endoscopy was normal as asked result whilst on phone.(bit not disused or confirmed by Gp) So ...in short....help...where does that leave me....what should I ask for or expect next? Every single bit of research etc on online says with a TTG IGA like mine it must be celiac disease and I know an endoscopy will not always find damage (4 samples taken)..... Ives been gluten-free for 2 weeks now.,,,,the change is absurd.......(although took until this weekend...). I am starting to have a bit of colour, my eyes look less tired and black underneath...my head is clearing and I actually feel like working....not just sleeping.....(but still tired) BUT it's also made me realise that I've clearly had an upset tummy for as long as I can remember..... On reflection I've been going to the loo lots and not always good.....now that over the last few days ive hardly been at all and different and my tummy just feels still, settled and 'normal'....... Which worryingly makes me realise I'd forgotten what 'normal' was...... So...advice, next steps, help, experiences.....all welcomed.....as if my biopsy IS negative with a TTG IGA that high and also now b12 deficient,,,,,if NOT celiac disease....what else..!!? Thanks loads experts....,
  17. Hi, I am new to these boards and am looking for some advice. I have been doing the Amazing doctor race for over 25 years now and the best anyone can come up with is Chronic Fatigue Syndrome / Fibromyalgia. I have been battling this illness for over 25 years now and I just need something to end. About every few years I see a new doctor who wants to figure out what I "really" have besides Fibro. They do some tests, send me to some specialists and all roads lead back to Fibromyalgia. UNTIL LAST WEEK. I just moved to another state and started with a new Dr. A nurse practitioner with her doctorate in medicine and a well known diagnostician around here. So I went with intentions of getting back on Fibromylagia meds. Rewind, about 3 1/2 years ago I was given a glimmer of hope for all my problems. Cymbolta. Yes, it helped. Made some of my joint pain go away, made me a little less angry. But that was about it. I lasted about a year and then I wanted to try and get pregnant again (I already have one child). So I had to go off it. Going off this medication really pin pointed the decline of my health. Two miscarriage after that and now I can't get pregnant after being able to get pregnant 5 times quick in my life. Fertility doctor has no answer despite my eggs being a little less great due to my age. But he said it is still possible. All my fertility tests normal. Back to the new nurse practitioner. Of course, like so many, after seeing me for my initial visit, reading my thousands of medical records, listening to me list my host of one million symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, thyroid cancer (fine now and levels are always fine), Wolf Parkinsons White (heart was ablated, fine now with that), eye swelling upon waking like an allergic reaction, massive scabs and head dandruff, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, weird bladder issues, choliostatis of the liver when pregnant, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden ( black on my tooth but dentist said loss of enamel, nothing else), stomach acid, cystic acne, irregular periods all of the sudden in the last few years, weird rashes and extreme itching for no reason, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it. She looked at some older tests I have, said I had some slight elevated liver enzymes (I have had this for years and years), and wanted to send me for a stomach ultrasound. It came back fine. Nothing wrong. The she sent me for a host of blood work. Different panels, didn't tell me what they were. Went and came back for the results. She said again I have slightly elevated liver enzymes, slight elevated cholesterol level (which I had had before as well despite eating a low fat diet my whole life). She said I have an elevated cortisol level, she said it could be why I can't lose weight but I needed to see an endo for it. I also had a large vitamin D deficiency requiring prescription in a huge dose once a week. The she hits me with the whopper. She did something called a Celiac panel and I have Celiacs. If you want to live, you can't eat wheat. No gluten, ever again. WHAT??? This women must have been out of her mind. Did she know who she was talking to? I am the carb queen. I live for it. Bagels, cereal, low fat cookies. No way lady, you must be wrong. There is no way I can stop eating that stuff. Quickly tears swelled up in my eyes. First I thought she was some holistic freak. Then I doubted it because no doctor has ever told me I had anything wrong with my blood work. I just didn't believe her. I left mad and sad. I went home to process. Here we're my numbers.... Immunoglobulin A : 128 (normal, range 70-400) Gliadin IGA Deamidated: 2.1 (normal, <20) Transglutaminase IGA Autoabe: 20.8 (out of range <15.1) I started reading and reading and reading. Could this really be? Could this be the answer I have been chasing for the past 25 years? I read more and started to wonder why she didn't advise me to go see a Gastro, the next obvious choice. She scared me. I immediately stopped gluten, just in case and to see what would happen. She said it would take time but maybe in two weeks I would have some relief. I researched, dropped $300 on gluten free products, bought every type of everything you could imagine, got schooled by another gluten free person, etc... I also immediately called her asking why she didn't recommend me for an upper endoscopy. She said she didn't need to, this is what I have. I asked her for a recommendation anyway. I had to know, I have to know. There is no way I can not know. I make the appointment for five days later and I go on my gluten free way. Five days of gluten free, maybe a little more clear but not so much difference. My stomach was doing circles, it's like my system didn't know what to do. I was in the bathroom straight for the first 24 hours, which is usually the opposite of what happens to me. Five days later, I go to the 1st Gastro. His nurse practitioner sakes me some questions, takes my vitals and puts me in the Dr's office. The guy walks in, doesn't shake my hand or introduce himself, looks over my blood for two seconds, says I don't know if you really have this but I will do the test, signs me up and walks out. Five whole minutes this jerk spent with me and asked me nothing. He says, don't worry, you can eat gluten. It doesn't matter either way, it won't effect the test. I asked him about the liver and the vitamin D, he replies it has nothing to do with any of this. I leave with a endoscopy planned for a week from that day. I left feeling upset. I got home and decided this was not a doctor I wanted to give my money to nor is he a doctor I want doing a procedure one me. What happens if I don't have Celiacs and I still have to deal with this guy to help me find something else? No way. I left and went to a dinner. I ate my first dose of gluten in form of two pieces of rye bread. Instant bloating. Wow, that's weird. I never even realized all these years that feeling in my stomach was bloating. I always just thought I could feel myself gaining weight every time I ate a carb. Lol. I continued that night with a bowl of ziti. It happened again. Wow. I went on to eat some cheese crackers before bed, just to see what would happen. Besides feeling like crap all day and exhausted (as usual), I woke in the morning with massive swelling under my eyes, like I had bee stings. Black circles with bee stings on top. You could see the blood vessels popping out. Stomach rumbling all the next day. Constipation comes back. I was shocked. Cold adding the gluten back in really make me feel something? I never in my life associated any of my pain or ailments with bread or pasta, never with gluten, I didn't even know what gluten was till five days ago. Wow! I decided from that moment on, no matter what, I NEVER WANT TO EAT GLUTEN AGAIN. It just didn't make me feel good. Since I added it back, my body is in what I call a "serious Fibromyalgia state". Eyes burning, body hurting, feels like I haven't slept in 10 years. My cognitive is so, so bad. Stomach is turning, bloated. And guess who just joined me? My hemmiroid decided to make an appearance all of the sudden. It's been a while but we reunite. Thanks! I go home, get some good recommendations from family to a good Gasto. I go. He spends an hour with me, learning my case, listening to everything from the beginning. Checking all my blood. Says this is a possibility that I have Celiacs, he sees it more and more and if I don't have celiacs, I probably have a sensitivity to gluten. He tells me he wants to do the endoscopy but now that I ate gluten free for five days, he wants to be sure we don't skew the results and wants me to wait another two weeks. And here is the kicker... You must eat gluten the whole time. SERIOUSLY??? Oh God, I'm going to die! I go home, cry some more, eat my gluten (and sneak in a few non-gluten things here and there, hope it's OK?) and now I wait. I am so anxious. This all makes so much sense. I can't stop researching and can't saying "WHAT If" "WHAT IF"??? What if this is my answer? What if this women is my savor? What if I have been poising myself and killing off my organs for 25 years and no one found it? What if??? That is why I come to this board, turning to people with I'm sure similar stories. I have endured so much. I have a sweet little five year old that is denied a functional mother. I have a great business that is suffering. I have a relationship with my husband that could be so much better. I have so much rage and anger and pain and I want there just to be an answer. Please, there has to be, please let this be it! Opinions from my test results? I know it sounds like I have it from everything I'm saying but what about the blood? How likely is it that I have this? Thanks for listening!!! I will post my endoscopy results here in two weeks, I promise. From the girl that couldn't imagine giving up "carbs" to the girl that is dying to, literally.
  18. Hii...thank you for reading. New to this. Before Xmas I became exhausted and lost about a stone in 4 weeks. Eventually had tests and had low white blood cells, low platelets and low neutrophils. Had more tests and my TTG IGA was above 300. I'm about to have a biopsy....looking for coeliac disease. Sound likely?!, I've now been keeping a food diary and I think I've probably ignored stomach symptoms as life us so busy..... Feel rotten and exhausted all the time.. Hoping the biopsy has the answers...... Another q.....should I choose to be awake or sedated, Thank you
  19. I have been with celiac most of my life (medically diagnosed in 1984). We have had 6 children. Through the years I have often mentioned the history, but since kids have not shown signs, doctors weren't concerned. My eldest child was diagnosed in her 20's. My youngest children are 6 and 8 years old and we now have a family dr attuned to my concerns!! My 6 yr old has been having constipation fairly regularly (no pun intended!) for a couple of months. Sometimes this is interfering with getting to the school bus on time! The 8 yr old does not seem to have tummy issues. About a yr and a half ago, another dr diagnosed him with ADD (non-hyper). That dr was also very pushy about rx meds for ADD. I never felt my concerns about anxiety or sleep disorders (he's had trouble falling asleep since he was 18 mos old!!) or celiac disease had been given proper medical attention. The last time I told him I was having trouble wrapping my head around the explanation of why anxiety and sleep disorders were not ruled out he answer: YOU ARE NOT UNDERSTANDING IT BECAUSE YOU DON'T WANT TO. IF YOU WOULD JUST PUT HIM ON THE MEDICATION, IT WOULD SOLVE ALL THOSE PROBLEMS. I was so in shock, I could not find words. My husband and I nodded our way through the rest of the conversation, then left the office, NEVER to return! Anyway, through all of that, I did some homework on celiac disease (something I haven't done all these years!). As I'm understanding it, some of my child's issues could be symptoms of celiac disease. Like being disorganized, inattentive, requiring much redirection from teacher and tantrum behaviors at home. Even lately, I've noticed that when he gets a really good night of sleep, he's waking up with puffy raccoon eyes, that linger all day long!! He's 4' 2" & weighs about 50 lbs. I'm wondering if some of the behavior issues are from being tired?? We have had him in therapy for a few months and the therapist is not convinced of the ADD either. He does not display behaviors (symptoms) consistently. At times, he has gone many weeks improving organization, attentions and self-control, only to return again. The family dr we are now seeing has agreed to test him as well, but said yesterday that he doesn't think he's as likely a candidate for celiac as his brother because of the absence of stomach issues. I did mention that I've learned of people with celiac disease that lack stomach issues. He seems like a good dr and was not hesitant in having either of the boys tested. He even seemed to suggest he was going to take some time to learn more about some of the things I was saying!! (I think I like this one! ) I have no knowledge of these tests that many of you seem to be familiar with. When I was diagnosed, I was a kid, and my parents gave me "need to know info" only. Additionally, many of these tests done nowadays had not yet been developed. I was given every test to rule stuff out, the last was some kind of biopsy. THAT resulted in my diagnosis. My kids' dr has ordered a cbc cmp free t4 tsh celiac disease panel for each of them. Following the tests, they have been referred to a peds gastroenterologist in Rockford, IL. (about an hour away!) Since my only experience with celiac is my own, I'd like to have some input from parents who have been here. I've started introducing my husband to the notion that things will have to change in a major way at home, and school, if either of the boys is diagnosed. They won't have to go it alone like I have for so long!
  20. Celiac.com 12/16/2013 - Numerous popular herbal products may be contaminated or may contain unlabeled substitute ingredients and fillers, meaning that they are not what their labels claim. According to the World Health Organization, adulterated herbal products are a potential threat to consumer safety. These revelations came to light after a group of Canadian researchers conducted an investigation into herbal product integrity and authenticity, with hopes of protecting consumers from health risks associated with product substitution and contamination. Using a test called DNA barcoding, a kind of genetic fingerprinting that been effective in uncovering labeling fraud in other commercial industries, the researchers found that nearly 60% of herbal products tested were not what their label claimed them to be, and that pills labeled as popular herbs were often diluted or replaced entirely, sometimes with cheap fillers that could be dangerous to consumers. In all, the researchers tested 44 herbal products from 12 companies, along with 30 different species of herbs, and 50 leaf samples collected from 42 herbal species. The researchers were Steven G. Newmaster, Meghan Grguric, Dhivya Shanmughanandhan, Sathishkumar Ramalingam and Subramanyam Ragupathy. They are variously affiliated with the Centre for Biodiversity Genomics, Biodiversity Institute of Ontario (BIO) at the University of Guelph, the Bachelor of Arts and Science Program at the University of Guelph in Guelph, Ontario, Canada, and with the Plant Genetic Engineering Laboratory, Department of Biotechnology, Bharathiar University in Tamil Nadu, India. Their laboratory also assembled the first standard reference material (SRM) herbal barcode library from 100 herbal species of known provenance that were used to identify the unknown herbal products and leaf samples. The team recovered DNA barcodes from most herbal products (91%) and all leaf samples (100%), with 95% species resolution using a tiered approach (rbcL + ITS2). Nearly 60% of the products tested contained DNA barcodes from plant species not listed on the labels. That means they were not what the label said they were. Furthermore, even though 48% of the products contained authentic ingredients, one-third of those also contained contaminants and/or fillers not listed on the label. The air data showed clearly that most herbal products tested were not what their labels claim, while most of the rest were poor quality, and often contained unlabeled, possibly dangerous, product substitute, contamination and fillers. They note that selling weak, ineffective, or mislabeled herbal supplements reduces the perceived value of otherwise helpful products by eroding consumer confidence. The study team recommends that the herbal industry embrace DNA barcoding to ensure authentic herbal products by effectively documenting raw manufacturing materials. They suggest that the use of an SRM DNA herbal barcode library for testing bulk materials could provide a method for 'best practices' in the manufacturing of herbal products, and note that this would provide consumers with safe, high quality herbal products. What do you think? Should herbal products and supplements be tested, authenticated and verified? Share your thoughts below. Source: BMC Medicine 2013, 11:222. doi:10.1186/1741-7015-11-222
  21. I recently was tested and diagnosed with celiac and mast cell disease. I have read a lot, but cannot find any info on the "degree" of severity of the celiac. I am also in treatment (second time) for ovarian cancer, so I get a lot of labs. Could you interpret this for me? 1. Celiac profile , IgA 175 ( range 66-436) 2. anti ttg IgA antibodies 12 (range .0-7) Thanks!
  22. A month ago I found out my hemoglobin was fairly low and I was diagnosed with iron defiiciency anemia. I put some things together in my head (the seemingly random anemia, Hashimoto's disease, a bunch of GI issues, chronic pain and fatigue dx'ed as fibromyaliga) and asked my doctor about the possibility of Celiac disease. She agreed that it could be the problem and ordered the IgA tTg test, which came out just fine. I don't know if she ordered a total IgA and I'm going to call and ask about that on Monday. I was wondering what people think about more tests. I do have an appointment with a GI doc over a month from now. I can't get an earlier appointment and can't switch to anyone else because I'm on Medicaid and this GI doc is the only one nearby who will take that insurance. I'm seriously considering forgetting about the GI appointment and further tests and dropping gluten ASAP and dairy as much as possible, moving toward dairy-free. I want to get that stuff out of my system and hopefully start feeling better! Is it worth it to keep eating food I know is bothering me so I can get more tests? With the negative IgA tTg test would you pursue other tests? I had pretty much decided to just go gluten free and see how I end up feeling in a few months but wanted to get the opinions of folks who have gone through all of this. Thanks!
  23. Celiac.com 06/27/2013 - Patients with villous atrophy and negative celiac disease serologies pose a diagnostic and therapeutic dilemma. When doctors are unable to determine what is causing villous atrophy in a patient without celiac disease, they usually classify it as a case of "unclassified sprue." However, doctors currently know very little about the best way to treat and manage cases of unclassified sprue. To get a better picture of this dilemma, a team of researchers recently examined the connections between villous atrophy and negative celiac serology. The research team included M. Degaetani, C.A. Tennyson, B. Lebwohl, S.K. Lewis, H. Abu Daya, C. Arguelles-Grande, G. Bhagat G, and P.H. Green. They are variously affiliated with the Celiac Disease Center, and the Department of Medicine at Columbia University College of Physicians and Surgeons at Columbia University Medical Center in New York, USA. For their study, the team looked at adult patients with biopsy-proven villous atrophy and negative celiac serology, evaluated at our tertiary referral center over a 10-year period. They noted test results for HLA DQ2/8 alleles, antienterocyte antibodies, giardia stool antigen, bacterial overgrowth, total serum immunoglobulins, and HIV. They also recorded treatment, response, and repeat-biopsy findings for each patient. They found that most of the 72 cases were classified as seronegative celiac disease, medication-related villous atrophy, and unclassified sprue. The majority of patients diagnosed with unclassified sprue reported symptomatic improvement with immunosuppressive therapy. Some patients diagnosed with unclassified sprue were found to have villous atrophy associated with the use of olmesartan. The team encourages further examination of the role of medications in the development of villous atrophy, along with the optimal dose and length of immunosuppression for patients with unclassified sprue. Source: Am J Gastroenterol. 2013 May;108(5):647-53. doi: 10.1038/ajg.2013.45.
  24. I've been having IBS symptoms for a couple months, and saw a GI recently who had me have blood work done to test for celiac desease. I had not received the results in over a week so I called his secretary and she said he is on vacation. She said the result was 5 units, and that's all she said. I finally got her to fax me the lab report. The doctor's discharge note from my visit listed Labs Transglutam IgA Ab and Total Serum IgA. The lab report that I received from his secretary today shows: IgA 228 MG/DL 70-400 TRANSGLUT IgA 5 UNITS < 20 < 20 Units Negative 20 - 30 Units Weak Positive > 30 Units Moderate to Strong Positive This, I assume, would show that I am negative for the antibodies? But I don't know. I have researched the tests on the net and saw that tissue transglutaminase antibody test is < 4 negative, 4 - 10 weak positive, and 10 - 20 positive. Are these 2 different tests? The secretary called the doctor and he said the only way to know for sure is to perform an EGD and take a biopsy to check the intestine tissue. I told her I had read that the gene test for DQ2 and DQ8 should be done as a process of elimination, and she said it is very expensive and my insurance probably wouldn't pay for it. Can anyone clarify these tests, my results, and what the next steps should be? Thank you!
  25. Hello everyone- I have been reading this forum for the past couple of weeks and wanted to post while I wait for my blood test/Enterolab test/DNA test. It's been very helpful. I'm beginning to suspect I am intolerant or sensitive to gluten, or possibly have celiac. I have not stopped eating gluten. Yet. Here are my symptoms: - Ferritin level of 4. Four. For several years. - Bloating, extreme gas, large stinky stools that float, uncomfortable feeling in abdomen for hours (not after every meal, but many meals). - Vitiligo that has emerged in the past year - Irregular periods - Asthma - Geographic tongue - Dry skin (I live in Florida where it is humid) - Fibroids Does anyone have any thoughts? I would appreciate any feedback. I'm preparing to do a gluten-free trial very soon. Thank you all for your help and have a good evening. Tam
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