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  1. Celiac.com 06/05/2017 - Doctors diagnose celiac disease by confirming various clinical, genetic, serologic, and duodenal morphology features. Based on retrospective data, recent pediatric guidelines propose eliminating biopsy for patients with IgA-TTG levels more than 10-times the upper limit of normal (ULN), along with a few other criteria. One retrospective study showed that researchers using levels of IgA-TTG and total IgA, or IgA-TTG and IgG against deamidated gliadin (IgG-DGL) could identify patients both with and without celiac disease. A team of researchers recently set out to validate the positive and negative predictive values (PPV and NPV) of these diagnostic procedures. The research team included Johannes Wolf, David Petroff, Thomas Richter, Marcus KH. Auth, Holm H. Uhlig, Martin W. Laass, Peter Lauenstein, Andreas Krahl, Norman Händel, Jan de Laffolie, Almuthe C. Hauer, Thomas Kehler, Gunter Flemming, Frank Schmidt, Astor Rodriques, Dirk Hasenclever, and Thomas Mothes. Their team conducted a prospective study of 898 children undergoing duodenal biopsy analysis to confirm or rule out celiac disease at 13 centers in Europe. They then compared results from antibody tests with results from biopsies, follow-up data, and diagnoses made by the pediatric gastroenterologists. In all cases, diagnosis was made for celiac disease, no celiac disease, or no final diagnosis. Blinded researchers measured levels of IgA-TTG, IgG-DGL, and endomysium antibodies, while tissue sections were analyzed by local and blinded reference pathologists. The team validated two procedures for diagnosis: total-IgA and IgA-TTG, as well as IgG-DGL with IgA-TTG. Patients whose antibody concentrations for all tests were below 1-fold the ULN were assigned to the no celiac disease category. Those whose antibody concentrations for at least one test were above 10-fold the ULN were assigned to the celiac disease category. All other cases were considered to require biopsy analysis. The team calculated the ULN values using the cut-off levels suggested by the test kit manufacturers. They conducted HLA-typing for 449 participants. To extrapolate the PPV and NPV to populations with lower rates of celiac disease, they used models that accounted for how specificity values change with prevalence. In all, the team found 592 patients with celiac disease, 345 who did not have celiac disease, and 24 with no final diagnosis. The TTG-IgA procedure identified celiac disease patients with a PPV of 0.988 and an NPV of 0.934. The TTG-DGL procedure identified celiac disease patients with a PPV of 0.988 and an NPV of 0.958. Their extrapolation model estimated that PPV and NPV would remain above 0.95 even at a disease prevalence as low as 4%. Meanwhile, tests for endomysium antibodies and HLA type did not increase the PPV of samples with levels of IgA-TTG 10-fold or more above the ULN. Interestingly, the pathologists disagreed in their analyses of duodenal morphology about 4.2% of the time, a rate comparable to the error rate for serologic tests. This study validates the use of the TTG-IgA procedure and the TTG-DGL procedure in lieu of biopsy to diagnose pediatric patients with or without celiac disease. Source: Gastroenterology. DOI: http://dx.doi.org/10.1053/j.gastro.2017.04.023 The researchers are variously affiliated with the Institute of Laboratory Medicine, Clinical Chemistry and Molecular Diagnostics, Medical Faculty of the University and University Hospital, Leipzig, Germany, the Institute for Medical Informatics, Statistics & Epidemiology (IMISE), University of Leipzig, Germany, the Department of Paediatrics, University of Oxford, Oxford, United Kingdom, the Translational Gastroenterology Unit, Nuffield Department of Medicine, University of Oxford, John Radcliffe Hospital, Oxford, United Kingdom, the, University Children's Hospital Halle, Germany, the Medical School, Hannover, Germany, Helios Hospital, Department of Paediatrics, Plauen, Germany, the Children's Hospital Prinzessin Margaret, Darmstadt, Germany, the University Children's Hospital Graz, Austria, the Children's Hospital, Justus Liebig University Giessen, Germany, the University Children's Hospital Leipzig, Germany, the Children's Hospital of the Clinical Centre Sankt Georg Leipzig, Germany, the Clinical Trial Centre, University of Leipzig, Germany, the DKD Helios Children's Hospital, German Clinic for Diagnostics, Wiesbaden, Germany, the University Children's Hospital, Technical University Dresden, Germany, and the Alder Hey Children's National Health Service Foundation Trust, Liverpool, United Kingdom.
  2. Hi, I've struggled with GI issues (IBS, GERD) and poly-cystic ovarian syndrome for the last 5-6 years (I am 26). My reflux has been continually getting worse and my doctor was concerned since I take high doses of Zantac. They referred me to specialty clinic for endoscopy. During my EGD doctor noticed lots of inflammation and he left a note stating that my villi in small intestine were flat. Only post op notes were to wait for the biopsy results of duodenum and along stomach; and to try another med. I've been having a lot of fatigue and easy bruising the last few months on top of worsening reflux. I've been primary surviving on chicken, bread, carrots...but it wasn't helping like it normally seemed to. Last week I started having joint pain that moves and comes/goes, as well as tingling in my hands and feet. After the tingling/joint pain started I stopped eating gluten/complex carbs because I thought maybe it was related to blood sugar; reflux is a little better but joint pain is not. Does this sound familiar to anyone? I had some blood work done for vitamins/minerals and liver function. Nurse over phone said it seems within normal limits; but that my liver function was on the lowest end of normal (AST =10). I have an appointment with my regular doctor tomorrow; as of Friday they didn't have my results but they wanted to follow up on joint pain/tingling.
  3. As I understand the Biopsy is the diagnostic gold standard. At the same time, it is not cheap and it is invasive. I understand that Celiac manifests serologically in many ways (or not at all). For seronegtive patients, it can be the only confirmation. What I don't understand is the clinical necessity of the biopsy with positive serology on certain tests. I understand that TTG can be elevated for causes other than celiac and that the tests vary in their specificity. It seems like the EMA test is highly specific (cited in this study as 99%). In one of the studies cited in this lit review, patients with positive EMA but negative biopsies, were re-biopsied 16 months later and had definite mucosal damage. "One striking feature is the relatively few false positive EMA tests (51/4107). Furthermore, it could be that the false positive rate is even lower. In one of the studies, five of the 39 who had a positive EMA test and normal small bowel histology consented to rebiopsy within 16 months.21 All had a flat mucosa at second biopsy." (Found here: http://pmj.bmj.com/content/76/898/466) James, M. W., & Scott, B. B. (2000). Endomysial antibody in the diagnosis and management of coeliac disease. Postgraduate Medical Journal, 76(898), 466 LP – 468. Retrieved from http://pmj.bmj.com/content/76/898/466. Cataldo F, Ventura A, Lazzari R, et al. (1995) Antiendomysium antibodies and coeliac disease: solved and unsolved questions. An Italian multicentre study. Acta Paediatr 84:1125–1131 I have high EMA, and I want to take care of my health and do testing that is medically necessary... but if I'm going to fork over several thousand dollars (my insurance will cover almost nothing) I want to fully understand the clinical value of the test. So here's my question: Why isn't serology enough to diagnose? What can a biopsy tell that we don't already know. Is there a clinical need to know the extent of mucosal damage? It seems like the treatment is the same either way (even if it were to be stage 1 damage and just be latent celiac). I want to understand why this is valuable and what would be the cost of not doing the biopsy. Can anybody help?
  4. Hello everyone! I am new to this so bare with me if I mess something up I've never posted on a forum. So on Friday I will be getting a biopsy done to confirm celiac disease. I'm wondering if I had a positive blood test what are the chances that the biopsy will come back positive showing blunted villi. I know its hard to say if you aren't a doctor but I'm curious. I guess I'm just looking for reassurance that I'll get a positive result. I know that sounds weird, like "wait you want celiac disease?" but I'm only 21 and I've been sick for so long and been to countless doctors and no one knows whats wrong with me. I finally think this can be the "thing" and maybe I can start to feel like a human instead of a zombie. Thanks for the input in advance!
  5. Celiac.com 05/28/2013 - Is an intestinal biopsy always necessary to diagnose celiac disease, or can diagnosis be made without biopsy? To answer that question, a team of researchers recently set out to compare celiac disease–specific antibody tests to determine if they could replace jejunal biopsy in patients with a high pretest probability of celiac disease. The research team included Annemarie Bürgin-Wolff, Buser Mauro, and Hadziselimovic Faruk. They are variously affiliated with the Institute for Celiac Disease in Liestal, Switzerland, and Statistik Dr. M. Buser, Riehen, Switzerland. Their retrospective study included blood test data from 149 patients with celiac disease, along with 119 controls. All patients underwent intestinal biopsy, and all samples were analyzed for IgA and IgG antibodies against native gliadin (ngli) and deamidated gliadin peptides (dpgli), as well as for IgA antibodies against tissue transglutaminase and endomysium. They found that tests for dpgli were superior to ngli for IgG antibody determination: 68% vs. 92% specificity and 79% vs. 85% sensitivity for ngli and dpgli, respectively. Predictive values were also higher for dpgli than for ngli; positive (76% vs. 93%) and negative (72% vs. 83%). Regarding IgA gliadin antibody determination, sensitivity improved from 61% to 78% with dpgli, while specificity and positive predictive value remained at 97% (P less than 0.00001). A combination of four tests (IgA anti-dpgli, IgG anti-dpgli, IgA anti- tissue transglutaminase, and IgA anti-endomysium) yielded positive and negative predictive values of 99% and 100%, respectively and a likelihood ratio positive of 86 with a likelihood ratio negative of 0.00. Omitting the endomysium antibody determination still yielded positive and negative predictive values of 99% and 98%, respectively and a likelihood ratio positive of 87 with a likelihood ratio negative of 0.01. Conclusion: Antibody tests for dpgli yielded superior results compared with ngli. A combination of three or four antibody tests including IgA anti-tissue transglutaminase and/or IgA anti- endomysium enabled reliable diagnosis or exclusion of celiac disease without intestinal biopsy in 78 percent of patients. This two-step method of performing jejunal biopsy only in patients with discordant antibody results (22%) would catch all patients except those with no celiac-specific antibodies; who would then be caught through biopsy. Source: BMC Gastroenterol. 2013;13(19)
  6. Hello, Around the end of October I was diagnosed with Celiac after the GI doc did an endoscopy and found evidence of flattened villi. So I have been gluten-free since then. However just before Christmas, I had a follow up with the GI dr and he said my biopsies came back negative for Celiac? He said if I haven't felt better I could stop the gluten-free diet. But since signs of improvement don't really show up until about 6 months (is that true?) I've decided to stay gluten-free until April or May just to see. However, a week ago I started feeling really ill whenever I ate. 95% of my meals were not in danger of gluten or CC as I prepared them at home. But then I think I finally realized the common theme with my meals - dairy. The first meal that made me sick had a greek yogurt sauce, a slimfast shake had milk in it, ranch dressing with some buffalo wings, and a corn tortilla quesadilla. Nausea, getting really warm, nearly immediate gastric dumping, etc. I thought I had gotten the The reason I say "I think I finally realized" is because it would be an awful intensely sensitive lactose intolerance - I'm getting a similar yet weaker reaction to < tsp of butter and possibly milk in baked goods. Which might also explain why my probiotics haven't helped ("may contain traces of dairy"). I also can't eat a lot of rice at the moment because it causes diarrhea. Can lactose intolerance really be that severe? Could it be caused by my possible Celiac dx or something else? I had also been dx'd with severe gastritis. The acid reducers have helped with some of those symptoms (abdominal tenderness/cramping). This whole diet change has caused a whole lot of stress and sadness. Rice and cheese were my big staples once gluten was cut out. And now I can't even eat them without distress!
  7. Hi there- we feel like we are trapped in a "no mans land" on a possible road to diagnosis... my teen son was diagnosed with Type 1 diabetes 3 years ago, and ever since then they screened for celiac every year. His numbers have slowly crept up from 17, to 21, and now 27... which now puts him in what his Endo called a "weak positive" range and isn't quite sure how to approach it since he said celiac usually presents with those numbers "off the charts". We've waited for over a month to finally get in to see a GI specialist who will help us decide if we should pursue an endoscopic biopsy. I guess with kids they hesitate to do it "too soon" because if it's a weak positive, the biopsy may not show anything yet... meaning we have to wait until his numbers are higher and send him back in for another one. They don't like doing multiple biopsies on kids because it carries more risk I guess. Anyway, I'd be willing to wait if it wasn't for the following concerning symptoms he's had, the most prominent being: 13 pounds of unexplained weight loss in 3 months, fatigue, and chronic leg cramps mostly in both calves. I would really like him to feel better, but worry they'll go in there and not be able to diagnose yet because his numbers aren't off the chart. Thoughts? Are these red flag symptoms for celiac and should we push for a biopsy at this point? Thanks for your insight...
  8. hi, i just saw these results: i can not find information about +IgA -IgG , also seems that the +IgA is just over the index. does IgG need to be positive too? for those of you that went on to the biopsy, thoughts? the pro's and con's? would you skip it and just seriously go gluten-free? thank you ! Component Your Value Standard Range TISSUE TRANSGLUTAMINASE IgG 0.25 Index <=0.90 Index Tissue transglutaminase IgA 1.32 Index <=0.90 Index
  9. Celiac.com 11/10/2015 - Doctors might not need a biopsy to accurately diagnose celiac disease in asymptomatic children who have elevated anti-tTG, according to the latest study. In that study, researchers in Italy evaluated a new biopsy-sparing protocol for diagnosing celiac disease in symptomatic children with high anti-transglutaminase (anti-tTG). Their data showed that this approach might also work in asymptomatic children with elevated antibody levels. In 2012, the European Society of Pediatric Gastroenterology, Hematology, and Nutrition (ESPGHAN) published guidelines that said biopsies could be omitted in children and adolescents with signs and symptoms of celiac disease if they met certain guidelines. Dr. Francesco Valitutti of Rome's Sapienza University led a team that set out to assess the accuracy of serological tests to diagnose celiac disease in asymptomatic patients in 286 children and adolescents who had been diagnosed with celiac disease. Among 196 patients with anti-tTG antibodies at least 10 times ULN and EMA positive, 156 had symptoms and 40 were asymptomatic. More than 90% of the symptomatic children (142/156, 91%) showed severe lesion degree on biopsy, and an even higher percentage of asymptomatic patients (37/40, 92.5%) had severe lesions. There was no significant difference in histological damage between the "high-titer" symptomatic and asymptomatic children, according to the September 15th online report in The American Journal of Gastroenterology. Among the EMA positive children with lower titers of anti-tTG antibodies, 70% of symptomatic children and 81% of asymptomatic children showed severe lesions. The researchers add that asymptomatic patients should follow a gluten-free diet "as strictly as symptomatic ones, in order to prevent other autoimmune diseases and enteropathy-associated T-cell lymphoma." Otherwise, the new guidelines apply to patients with: TTG > 10 times ULN; an EMA of at least 1:80; a positive repeat serology to exclude laboratory error; HLA-DQ2 and/or -8 positivity; and a serological response to a gluten-free diet. If the research team can confirm these results in larger, multi-center prospective studies, their 'biopsy-sparing' protocol might be made available "to both symptomatic and asymptomatic patients with anti-tTG antibody titer (at least) 10 times the upper limit of normal (ULN) and anti-endomysial antibodies (EMA) and HLA-DQ2/DQ8 positive," Dr. Valitutti told reporters. Source: Am J Gastroenterol 2015
  10. Hello all this morning I finally got a call back from my doctors office after having an endoscopy a couple of months ago. My endoscopy showed flattened villi, so I started on the gluten free diet. I've been feeling a bit better, bowel movements not so loose and frequent, acid reflux gone, more energy and months of horrible brain fog cleared! I was sure the doctor was ringing to confirm diagnosis, but instead the call was from reception ensuring me my results are all clear. Ive never had the blood tests done, and don't know of any history of celiac in my family. my question is, what else can cause flat villi? I'm worried and do not want to just dismiss these findings. Is it possible this could still be celiac? thanks in advance!!
  11. Celiac.com 05/19/2016 - Using a prospective cohort study, a team of researchers recently set out to assess the outcomes of the latest celiac diagnosis guidelines from the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) and British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN). The research team included Elisa Benelli, Valentina Carrato, Stefano Martelossi, Luca Ronfani, Tarcisio Not, and Alessandro Ventura. They are variously affiliated with the Department of Medical, Surgical and Health Sciences, University of Trieste in Trieste, Italy, and the Institute for Maternal and Child Health IRCCS 'Burlo Garofolo' in Trieste, Italy. The study was conducted at the Institute for Maternal and Child Health IRCCS Burlo Garofolo in Trieste, Italy. For the study, the team prospectively enrolled children diagnosed with celiac disease without a duodenal biopsy (group 1), following the last ESPGHAN and BSPGHAN guidelines, and children diagnosed with a duodenal biopsy, matched for sex, age and year of diagnosis (group 2). All of this was done over a 3-year period. The team made sure all patients were on a gluten-free diet (gluten-free diet) and then followed them for clinical conditions and laboratory testing at 6 months every year since diagnosis. The average follow up period was just under two years. Their analysis looked at resolution of symptoms, body mass index, levels of hemoglobin and anti-transglutaminase IgA, adherence to a gluten-free diet, quality of life, and supplementary post-diagnosis medical consultations. Out of 468 patients, the team found 51 patients (11%) who were diagnosed without a duodenal biopsy (group 1; median age 2.1 years), and matched those patients to 92 patients diagnosed with a biopsy (group 2; median age 2.4 years). At the end of follow-up the two groups showed statistically comparable clinical and nutritional status, anti-transglutaminase IgA antibody levels, quality of life, adherence to a gluten-free diet, and number of supplementary medical consultations. This study indicates that celiac disease can be reliably diagnosed without a duodenal biopsy in approximately 11% of cases. At least during a medium-term follow-up, this approach has no negative consequences relating to clinical remission, adherence to diet, and quality of life of children with celiac disease. Source: Arch Dis Child 2016;101:172-176. doi:10.1136/archdischild-2015-309259
  12. Hello everyone. I'm new to this forum. I'm not quite sure what to say anymore. It's been a several year ordeal. My bloodwork came back positive for Celiac Disease about 8 years ago, but my biopsy 3 years ago came back negative (I was eating gluten at this point.) When they did my biopsy they ended up finding MALT Non Hodgkin Lymphoma of the Duodenum. Anyway, in remission from Cancer and just wanting to feel better and BE better. I have been diagnosed with Hashimotos Thyroiditis, Diabetes type 2, Fibromyalgia, Bipolar 2, Migraines, ADHD, TMJD, and Generalized Anxiety Disorder and am on a plethora of medication. I am seeing an integrative MD tomorrow afternoon, and going to bring this up to him. Something, something's gotta give. Just not really sure where to turn or what to think anymore. -Jessica
  13. Celiac.com 03/09/2016 - Can doctors reliably diagnose celiac disease in kids without duodenal biopsy? A team of researchers recently set out to see if they could use predictive values of transglutaminase (tTG) antibodies to diagnose celiac disease in kids, without performing duodenal biopsy. The research team included MA Aldaghi, SM Dehghani, and M Haghighat, of the Department of Pediatrics at Shiraz University of Medical Sciences in Shiraz, Iran. For their study, the team selected patients with likely celiac disease, who had been referred to a gastrointestinal clinic. The team first conducted physical examinations of the patients and performed tissue transglutaminase-immunoglobulin A (tTG-IgA) tests. For patients with serological titers higher than 18 IU/mL, the team performed upper endoscopy. The team assessed a total of 121 children, 69 female and 52 male, averaging 8.4 years of age. They found a significant association between blood tests and biopsy results; in other words, subjects with high antibody levels had more positive pathologic results for celiac disease, compared to others (P < 0.001). They achieved maximum sensitivity and maximum specificity of about 65% with a serological titer of 81.95 IU/ml. The calculated accuracy was lower in comparison with other studies. The team found lower antibody levels in patients with failure to gain weight and higher antibody levels in diabetic patients. In this study, a single blood test (tTg-IgA test) was not sufficient for researchers to reliably diagnose celiac disease without duodenal biopsy. Source: Iran J Pediatr. 2016 Feb;26(1):e3615. doi: 10.5812/ijp.3615. Epub 2016 Jan 30.
  14. 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
  15. I had a celiac blood test around may 2015. I'm 20, male. AGA - 35 range 0-20 TTG IgA - 5 range 0-20 I believe total IgA was normal. I have been gluten free, avoiding gluten best I could for about 2 weeks before this. On june 2015, did a biopsy, results said no signs of villous atrophy, doctor convinced I don't have it. Been gluten free for about a month before this, doctor only said to eat a 'normal' diet beforehand. I know that this could yield false negative results, but I don't think the amount of time is enough to hide the damage? Had symptoms since I was 4-5 years old, very skinny , pale, constipation, diarrhea, inconsistent nausea (from eating wheat products, soy sauce), migraines, stomachaches, night terrors, sleepwalking. Symptoms were most evident till around 10 years of age. During my teens, the symptoms seemingly start to fade, rarely nauseated, random bouts of diarrhea 1-2 times a month or so. Been gluten free for up to 8 months now, decided to start eating gluten again just to see how I would feel/ for retesting. Almost on day 2, no noticeable symptoms. Ate gluten heavy for a month, a year before, breads, pasta 2-3 times a day, lost over 3-4 kg, started feeling overly lethargic during the day/after eating gluten. Sharp stomach pains and mild diarrhea once or twice. I'm quite certain it's celiac, but if its not, and after reading about how non celiac gluten sensitivity might not exist,i don't really know what to think anymore. Any opinions/ similar experiences would be appreciated.
  16. Hello, I recently tested positive for Celiacs disease via the blood test and currently have a biopsy scheduled in January. I have been having progressive stomach issues for the past year and I am currently at the point where eating anything hurts and cause massive stomach pain and other digestion issues. I already eat mostly Gluten Free because my wife has Celiacs, so when my blood test came back it was just above the normal high range (few points into the positive). Since I don't eat gluten that much at all already I can see how having a slightly above average result would still be accurate for a positive confirmation in a blood test (Since normally you would have way higher results when eating gluten all the time). Since my initial diagnosis I have stopped eating Gluten entirely and still have having stomach pain. While I believe the biopsy will still reveal useful information I am conflicted with the pre-eating instructions. My current issue is I have 3 doctors that all have told me different things about how to prepare for my biopsy. 1 - Has no idea about celiacs diagnoses and one day tells me to eat it and the next tells me to not. 2 - Says I don't have to eat Gluten and my biopsy result will still be accurate. 3 - Tells me that I need to eat lots of gluten for my biopsy to be accurate. What should I do so that I have an accurate test result but also not cause any more potential damage if I do infact have advanced Celiacs disease/stomach damage? Has anyone else been told conflicting information about eating gluten products before biopsy? Thanks in advance!
  17. Hello everyone! I'm back after a year of still no answers. Finally seeing a new group of doctors since I recently got a new job. My new primary doctor thinks I may have celiac and wants me to get another opinion. Going to see the new gastroenterologist next week and I can't wait to go. I'm hoping to finally get some answers to the issues I've been having. Although it will be a huge lifestyle change I think I will be relieved to know that everything I'm feeling just isn't in my head. Doctors are so quick to tell me all of my symptoms are stress-related. Here is a little background about me! May of last year I started realizing I was loosing my eyebrows (Still haven't grown back!!) - initially thought it was my thyroid, all levels were within range though. I'm also not loosing them on the outer corner of my eye but more towards the inner corner (Doesn't really matter I'm sure). Tested my Iron and my ferritin was down to an 8 when in previous years it was around 200 something. No bleeding episodes and my menstrual cycles are light. I started researching hashimoto's and iron deficiency and started seeing stuff about celiac. In the lab I work in I was tested for tTg IgG/IgA, Gliadin IgG/IgA and Total IgA. I was not deficient in IgA and I'm not sure if the testing for gliadin was deaminated or not (don't believe it was). I don't have my exact results for the tTg IgG/IgA or Gliadin IgA but I remember they were within normal limits, but my Gliadin IgG was 3.59IV and a positive was anything greater than of equal to 1.1. I also had the genetic test done and I was negative for HLA-DQB1*02 and HLA-DQB1*03:02 but I was positive for HLA-DQA1*05. I know this isn't diagnostic in itself for celiac disease. I had a endoscopy and the report read as follows: A. Duodenal mucosal biopsies with no significant microscopic abnormality. No diagnostic histology features of celiac are appreciated B. Gastric antral and oxytocin mucosal biopsies showing chronic gastritis. Reactive foveolar hyperplasia is present. H. pylori is negative The material present is partly tangentially sectioned. The villous crypt ratio is about 3.5. There are intraepithelial lymphocytes but they don't seem to be significantly increase in most of the villi. There are inflammatory cells in the lamina propria including plasma cells and lymphocytes with an occasional germinal center. They are normal to slightly increased in number. No histologically diagnostic features of celiac are appreciated. Really hoping this new gastro will shed some light on all of my questions... Trying to eat as much gluten as I can tolerate before going for testing. I previously did not experience any GI symptoms but now I have been experiencing stomach pain (not everytime I ingest gluten but occasionally) The pain comes in waves, the pain builds up then subsides..I'm okay for a little while and then it happens again. Keep your fingers crossed for me!!
  18. Celiac.com 03/27/2015 - Researchers don't have any solid idea about how common cases of seronegative celiac disease might be, but many feel strongly that rates of seronegative celiac disease are underestimated in children, and may result in misdiagnosis of celiac cases. One team of researchers wondered if an emphasis on "serology-led" diagnosis might be contributing to a low rate of celiac disease diagnosed in children from the United States. That research team included Deborah L. Preston and Yoram Elitsur, and they recently set out to investigate the rate of celiac disease after upper endoscopy (EGD) with no prior positive celiac serology compared with the rate of celiac disease followed by positive serology. The team conducted a retrospective review of that charts of all of the first diagnostic EGDs in children (2009–2013). They split the patients with confirmed celiac disease into 4 groups: group A, positive EGD/positive serology (histology-led diagnosis); group B, positive serology/positive histology (serology-led diagnosis); group C, positive histology followed by negative serology (control 1); and group D, positive serology followed by negative histology (control 2). The team reviewed a total of 761 upper endoscopic charts. They confirmed 15 children with celiac disease, for a rate of 1.97%. Group A and group B had similar demographic data or clinical symptoms, and similar rates of celiac disease between histology-led celiac diagnosis (group A) and serology-led celiac diagnosis (group (1.18% vs 0.79%, P = 0.273). This study showed that endoscopy-led diagnosis and serology-led diagnosis found celiac disease at similar rates. This finding suggests that better diagnosis of celiac disease in children requires performing an adequate number of intestinal biopsies in every diagnostic upper endoscopic procedure. Source: Journal of Pediatric Gastroenterology & Nutrition: March 2015 - Volume 60 - Issue 3 - p 357–359. doi: 10.1097/MPG.0000000000000602
  19. Hey everyone, I was 21, had an increasing diarrhoea problem for months docs could not find why? Then a gastroenterology specialist asked for celiac disease blood tests. Whoops, came positive on anti-gliadin IgA and IgG as well as anti-endomissium IgA and IgG. Had to get a biopsy somewhere else by a general surgeon and that came negative. But the previous doc told me that could happen, to go gluten-free anyway as I showed positive on 4 bloodtests. After I went off gluten the months-old diarrhoea problem eased up and disappeared in a couple weeks. Now I am 24 and obliged to join the army (Turkish, btw). Army docs want me to get sick to get me off duty. So I have been on gluten again for 10 days. I havent had any problems yet, and have been eating like crazy. Read that some people here suffered enormously even after one meal. I do have a strong body, even the worst cases of diarrhoea days, I had no other visible problems and all my other stuff looked/looks fine. Now I am curious of all this, if I have it or not at all. The blood was all positive and the symptom stopped. But no problem for 10 days, when do the symptoms usually show? what was your experience or do you have any advise on this? wish y'all a healthy life! Hasan
  20. Celiac.com 03/18/2015 - Getting high-quality biopsy specimens is key to making accurate celiac disease diagnoses. Endoscopists may take either a single- or double-biopsy specimen with each pass of the forceps. Does it matter whether they take one or two? Is two better than one? A team of researchers recently set out to answer those questions, by comparing the quality of biopsy specimens obtained with the single-biopsy and double-biopsy techniques. The research team includes M. Latorre, S.M. Lagana, D.E. Freedberg, S.K. Lewis, B. Lebwohl, G. Bhagat, and P. H. Green of the Celiac Disease Center, Department of Medicine, Columbia University, New York, New York, USA. Their prospective cohort study looked at patients undergoing upper endoscopy with confirmed, suspected, or unknown celiac disease status. A total of 86 patients enrolled in the study, 47% with known celiac disease, 36% with suspected celiac disease, and 17% with an unknown celiac disease status. In each case, patients received four biopsy specimens from the second portion of the duodenum. Two were made using the single-biopsy technique of 1 bite per pass of the forceps, and two more using the double-biopsy technique, which takes 2 bites per pass of the forceps. Specimens were blindly reviewed to determine orientation, consecutive crypt-to-villous units, and Marsh score. Well-oriented biopsy specimens were noted in 66% of patients with the single-biopsy technique and 42% of patients with the double-biopsy technique (P < .01). Analysis of matched pairs showed improved orientation with the single-biopsy technique (odds ratio 3.1; 95% confidence interval, 1.5-7.1; P < .01). This persisted in subgroup analysis of patients with known celiac disease (P = .02), villous atrophy (P = .02), and a final diagnosis of celiac disease (P < .01). Now, this is just a single-center trial, so results need to be compared with results from additional cities. Interestingly, these results suggest that one bite is actually better than two, because the single-biopsy technique improves the yield of well-oriented duodenal biopsy specimens. For best results, the endoscopists should consider taking only one biopsy specimen per pass of the forceps in patients undergoing biopsies of the duodenal mucosa. Source: Gastrointest Endosc. 2015 Jan 29. pii: S0016-5107(14)02380-3. doi: 10.1016/j.gie.2014.10.024.
  21. I posted a week or so ago about some issues that I am having with my diagnosis. Someone asked me to post my biopsy results from my endoscopy. I never received any replies after that. Can you take a look at this and let me know whether it indicates Celiac to you or not? My pathology report says "Duodenum, Second part, Biopsy: Focal intraepithelial lymphocytosis. The sections through the small bowel biopsy show fragments of duodenal mucosa with focal intraepithelial lymphocytosis and intact villous architecture. There is no evidence of peptic duodenitis or microorganisms." And then at the bottom of the page it says, Interpretation "duod ?sprue mild chr gastritis o h pylori colon bx all neg." Do you want me to scan this page and post it? Or is that enough information? Thanks. I really appreciate it.
  22. I was diagnosed with Coeliac disease at age 2 (biopsy) and have been on the diet all my life. (Now aged 45) This is the fist time properly reading anything about it coming to this website. I have always understood Coeliac disease to mean - eat wheat and you throw up, have diarrhoea and stomach pains. When I moved from milk to gluten aged 6 months I started being sick and lost weight. Once I was old enough to have freedom to roam a bit, aged 11ish I cheated when it suited me on a snack here or there. And through my adult life when I’ve been caught out on the road I’ll eat a slice of pizza, breaded chicken or other junk food to keep me going when there’s no other option. Stock cubes, beer, soy sauce etc. I’ve always treated as ok but know they have traces. I have stayed on the diet, with the exceptions above admittedly because way back I was told even without any symptoms you have to stay on the diet as otherwise ‘it’s bad for you’. And so I have, but thinking it has never affected me past the age of about 8 years old. Reading this site though has shown me a whole list of things I would never have though had anything to do with being a coeliac and look more like a list of things that happen to people in general. All very vague and nebulous symptoms. I thought Coeliac disease did only one thing - destroy villi in the small intestine thus making it impossible to absorb nutrients. This causes rejection of food and malnutrition. Anyway, the reason I am here: I recently saw a gastroenterologist as I had a stomach ache for a couple of weeks and was worried. I had various test that thankfully showed a healthy digestive system along with healthy villi. I then asked him about my condition saying if I eat gluten I don’t notice any symptoms. People say 'you have to stay gluten free for life’ etc.etc. What’s the deal? His view was - Well, maybe you don’t have Coeliac disease and we could check to confirm it. He has recommended the following action: Get blood test now to confirm antibody is negative. Start 5 weeks of eating gluten - 100g / day of wheat. Test again for the antibodies If still negative get a biopsy to be sure. If negative then you are not a coeliac. This seems to go against what I’ve read here. I am surprised that being Coeliac is a vague thing these days. As an infant I would have died presumably if it was ignored but it seems people wander around for years with it not realising they have it. Very different to what I understood it to be. So perhaps I really do still have it. So until today I was thinking I was about to walk away from the diet clear of the disease. I think taking the gluten challenge and tests may be good for me though. If it is positive then it will give me the cue to stick properly to the diet.
  23. My 13 yr old son has just been told the results of his biopsy were negative, his blood test results were negative, but he has low IAg, he is still suffering from weight loss, fatigue,nausea, constant burping, dry lips ,mouth ulcers, the list is endless. His gastro consultant noted smooth stomach wall with flattened villi when they performed biopsy, and felt this indicated celiacs, but after biopsy results he has discharged my son to a peadiatrician ,who thinks my son is suffering from chronic fatigue. Has anyone any advice because we are desperately trying to find a solution .Thanks
  24. I have what may be a DH rash, but I began a gluten-free diet before my doctor recommended having a biopsy to confirm the diagnosis. My doctor’s recommendation for a biopsy was based on, in her words, a ‘low-positive’ tTG IgG result (My IgA result was negative, but total IgA was not tested). The rash has been so terrible and disruptive that I couldn't bear the thought of completing a gluten challenge to be diagnosed, so I thought I would rather wait and see if the gluten-free diet affects the rash over the next several months. I’ve been eating gluten-free for six weeks now. After a month on the diet, I felt like the rash was receding: it was flattening out, not as itchy, and it was no longer affecting my ability to function in the daytime or sleep at night. About three days ago, I noticed increased itchiness and some of the previously receding rash patches have become inflamed again. I’ve also noticed new hives and intense itching on other patches of skin where no hives have popped up yet. The rash seems to be relapsing and spreading to new areas. These are my questions: -I’ve seen from other posts that a DH biopsy can be falsely negative if a person is no longer eating gluten. But if I have active rash, how can there not be IgA deposits in my skin that a biopsy would detect? -If I am ‘relapsing’, or the rash is spreading, is it a definite indicator that I have accidentally gotten gluten in my diet? In other words, does DH ever spontaneously relapse on a clean diet? If it only relapses and spreads when there’s gluten in the body, does that mean I haven't been perfect on the diet as I supposed I was, and could probably have a diagnosis through biopsy? I’ve read that DH can be difficult to diagnose, and other skin issues can look like DH rash. I am still chasing a definitive diagnosis because I’m concerned that if the rash I have isn’t DH, I may be letting a different medical problem go undiagnosed and untreated. Thanks for reading this. I appreciate any thoughts you can offer.
  25. Hello I'm knew here and a very confused mother of a 6 yr old boy who recently was being followed by a Pediatric Rheumatologist due to joint pain and inflammation. He was tested for juvenile Arthritis which all came back negative but during those tests they ran a IgA blood test in his and it came back at 49.5. He was then referred on to a GI doctor at sicks kids hospital were a biopsy was booked and done. The doctor treating him was on vacation and so another doctor on his team did the procedure and only took 3 samples all which came back negative. Our doctor would of preferred a min of 6 he stated. Our GI specialist was ready to confirm a diagnosis of celiac disease just on the IgA level alone but gave us the option to repeat the blood work, We choose to do that due to us having a very difficult time expecting the diagnosis. We just got the results today of the repeated blood work, this was given to us over the phone by the receptionist in his office. She called to tell us the doctor said my sons levels were with in normal range. But she didn't mention IgA she mentioned that it was a TTG test which was at 2.0 I believe she said. is the same thing as the IgA test? and what would of made the initial IgA test so high at 45.9 which we were told was much higher then normal and that if it was lab error or a false positive it would of only been by a few points, not as high as my sons was. He stated false positives are not values that are double normal values. The receptionist said we are good and there is no indications of Celiac disease so continue on regular diet. I was so happy at that moment but as the day as went on I now have all these questions. We do go back to see the doctor in 8 mths but not sure I can wait that long to have my questions answered. I would love for all this to be true that he does not have celiac disease but at the same time I keep wondering if not Celiac then why else would the IgA level be so high and why didn't that get retested this time around and only the TTG when we requested the IgA do be re done so we could see if it was a false positive for our own sake as parents before we subjected our son to such a difficult lifestyle change. Any advice would help me please. He has always been on a full regular diet during all the testing and never started a gluten-free diet. His issues are mild which includes occasional constipation and diarrhea, irritability and joint pain and inflammations.
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