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Found 84 results

  1. This is my second thread within a few days, sorry it is long! My biopsy results came today, exactly 6 weeks after the endoscopy. They were "reported as normal." And I am honestly devastated. I've been crying all day. I needed those samples to come back positive, because I cannot - no, I will not - go on like this anymore. Some background: I had panic attacks in 2011 that eventually had me hospitalised with a heart rate of 170. After leaving the hospital I noticed I had constant indigestion and light headedness, symptoms that they assured me were due to the heart rate. When things calmed down, they said it was the beta blockers. After coming off the beta blockers, I started questioning my doctors why I had indigestion, acid reflux; why I was now light headed in the cinema, squinting and holding my head from the loud noise; why I was now sensitive to the sun, to light, to heat; and why I had symptoms of IBS. To cut a long story short, I've been getting treatment for IBS and especially the reflux since 2012, with absolutely no success. I've had every test and I now have a hiatal hernia and acid/bile in the esophagus constantly. I've also had muscle pain and severe weakness, and joint pain. After writing my doctor a letter last May, he suggested testing for celiac, as all my symptoms fit and my father had actually been found celiac positive in his last blood test, but my dad had no idea about that until very recently. I've had three blood tests - all negative. I've had a biopsy - negative. And I've been eating copious amount of bread and wheat for many months, and have never felt worse. The doctors tell me that the reflux will just stop on its own one day. I don't think that ever happens. I mentioned that my father had been diagnosed with M.E/Chronic fatigue syndrome in 2000, and that for a long time we've wondered if I might have inherited it. They didn't really say anything to that. I know it's not good to have celiac disease, but it has treatment, and it has hope. There are worse things to be diagnosed with, crohns, even M.E. There is no treatment for those. I don't want to have fundoplication surgery for the reflux and hernia, because it sounds awful and scary. The gastroenterologist didn't even think the surgery was necessary when I last spoke to her. But I really cannot go on with it, I refuse, so without a diagnosis of celiac, what's left for me to do? Just fundoplication. I was prepared to replace my food, was planning it. I've been researching for months. I even managed to delude myself into believing I have celiac. When my dad got a letter a couple of weeks ago about his last blood test being "strongly suggestive of coeliac disease," I hoped even harder. I thought it was a sign! I feel so foolish. Now I'll have to wait to see the gastroenterologist again to talk about... What? Fundoplication? She didn't even want to do it. She just shrugged and smiled and said I was a difficult patient. I'm going to see my dad's doctor this week, if I can, to talk about how likely it is that I might have celiac after all, regardless of my results, because of my dad's positive blood test, and to discuss the possibility I might have M.E/Chronic fatigue syndrome. In all honesty, I was prepared to look into M.E, until my dad's letter. Then I was even more certain my problem was gluten. Now they tell me, I have no problem with gluten. I feel SO ill right now, I can only describe it as "malaise." My head is light yet heavy, with pressure. My eyes are begging to close. My gut has been painful for over a week. I can feel acid reflux as always. My nails are cracked and peeling, as always. There is blood in my stools. My muscles are painful and so weak that I couldn't stretch out my arm while holding a mug without my arm feeling weak and wobbly. My legs were wobbling as I walked on Saturday. My gums feel as if there could be an ulcer. And I have acne, pale/yellow skin tone, and a headache is threatening. I just can't go on. Really thinking about giving up. I will try to go gluten free anyway, but my mum doesn't believe gluten is my problem and has been sceptical the whole time, so she is reluctant to learn about cross contamination in the kitchen. She just says it's not the problem and it's something else. I don't want to have NCGS because I don't think my doctors/gastroenterologists believe it exists. Thank you for any help :(.
  2. I was diagnosed with celiac disease four years ago (through a biopsy and blood test). I immediately stopped eating gluten and have followed a rigid gluten-free diet ever since (I sometimes eat at restaurants and cafés but am always careful when I do). Around the same time (i.e. four years ago) I started having occasional rashes on my tush. I had previously had rashes on my elbows and knees that were thought to be eczema. The progression usually goes like this: an itchy red bump, followed by a raised yellowish blister (also itchy), spreading to a more diffuse pink splotch, finishing with a dark red scab, and then healing. I have always noticed that this usually occurs symmetrically on my body. Eventually it started appearing on my knuckles and fingers, and occasionally on my back and stomach. About a year ago it started to appear fairly intensely on my scalp. At night the itching (especially on my backside) wakes me up. I went to the GP several times and received a variety of possible diagnoses (rarely with any degree of certainty): eczema, fungus, scabies, herpes. I was swabbed for herpes three times with negative results each time. I was prescribed a variety of creams and topical steroids, none of which really worked, except that the steroid (Eumovate) does reduce the itching. More recently I've been using an essential oil mixture that also seems to help the itching. I occasionally get periods of remission, often when I travel, and most recently when I had the flu and my skin cleared up completely for a week. I'm never able to really identify anything different in my diet during these periods of remission. At one point the herbalist put me on the Gaps diet, which I did for a couple months with limited success. My questions are these: 1) are there other people here who have adopted a strict gluten-free diet but still have DH? 2) my GP told me that even though I have been gluten-free for a long time, a biopsy of my skin would still give good results, because I have active symptoms. Does anyone have experience with this? I'm open to any other advice and information people would like to add. I've been reading this part of the forum and have already learned a lot. Thanks
  3. Hi everyone. Has anyone ever heard of a doctor ordering an endoscopy biopsy before doing a blood test? When I asked my GP for a celiac test she sent me straight to a GI doctor without doing any blood tests. The GI asked about all my symptoms and I litterally handed him the list (in addition to describing some of it). He immediately ordered an endoscopy with biopsies and a colonoscopy. After he left the room I realized he didn't mention blood work so I asked his nurse to ask him about it. She came back saying he said he would do it after. I'm actually fine with that because I've read horror stories of people with negative blood tests not being diagnosed for years. But I'm curious as to why he would choose to do it in that order. I can't find any stories or articles showing the biopsy preceding the blood test. Is it possible he saw all my symptoms and decided not to beat around the bush and just go for it? With that in mind, I had the endo and colonoscopy today (no turning back now). If the biopsies show celiac, will there be any reason for the blood test? Thanks, Kat
  4. Okay. Long story short - I've had itching blisters coming and going for at least 10 years, I'm 27 now. When I was 23 I got diagnosed with an autoimmune kidney disease. Ever since then I've been very careful with my diet and avoiding, but not completely cutting out gluten. I've had stomach problems since I was a kid. Had acne since I was 14. Diagnosed with PCO. Always feeling tired. Can eat tons of food and never gaining any weight. Recently I found out I am anemic, Ferritin was 7 (range is 10-70 I think) I was also deficient in D-vitamin. They took transglutaminas tests but it was negative. I started eating gluten again in February, and my blisters and ezcema like rashes came back quite quickly. I know a gastroenterologist and told him about my low iron, my blisters etc. And he immediately said that it sounds like celiac disease. He scheduled a gastroscopy (they go in with a camera through the mouth and take biopsies from the small intestine) that I did today. The doctor took 3 biopsies and said that it looked like the villi was flattened. He also said that I could start a gluten free diet if I wanted to before the test results comes back. I'm just confused right now... shouldn't they do a skin biopsy on my blisters as well? I read about ppl having DH who do that and get diagnosed that way. how can the blood tests be negative and the biopsy not? if i go on a non gluten diet now, my blisters and rashes will go away which is good ofc, but then if the biopsy come back negative, they can't do a skin biopsy? It would make so much sense to me if I'm celiac. Therefore I'm scared the biopsy wont show anything since I've been going on and off gluten for years. Although the doctor said it looked like I am celiac? And the blisters can't be anything else than DH!! And the low iron and everything. Ugh. I just want the results now... And know for sure.
  5. I've been dealing with digestive issues, extreme fatigue, anxiety, depression, and brain fog for a while, nearly 3 years if I'll be honest. Digestive issues primarily in the last year and a half. I switched PCP's and the new doctor tested me for Celiac. The blood test came back positive. But, the biopsy I later had came back negative. Only one specimen was tested. After the biopsy, before the results, the GI specialist told me I could start my gluten free diet. So, I've been on a gluten free diet for three weeks. My digestive issues have improved greatly. Stools are starting to look normal again, and my energy is getting better every day, and the brain fog feels like it is lifting. Deductive reasoning tells me that if I have a positive blood test, negative biopsy, but show positive results on a gluten free diet that I have Celiac Disease. I'm waiting on word from my PCP about what this means for the Celiac Disease diagnosis, but welcome your thoughts!
  6. Hi I'm new to the forum and need some help please. I have had RA and Sjorens for over 6 years. Also anemic and while following that up they did a lower and upper scope and biopsies. The biopsy came back boarderline for Celiac disease. Bloos test was done and while waiting for that I started to do alot of research about the disease and seemed from what I read that the blood work would come back positive. Nope couldn't be that easy the blood work came back negative. So now I'm not sure which is the most accurate? I figure I should just follow that diet and see what happens but I have read it could take up to 2 years to see real results and doubt I could do that without an actual answer. Please help!!
  7. Hi everyone My 7 year old daughter was juat diagnosed 2 days ago by a celiac blood test (after over 2 years of constant stomach aches, constipation, unexplained anemia and headaches). Should she have a biopsy done as well? I'm on the fence as it can be a little invasive and the bloodwork already indicated that she has the disease. Her GP doesn't think it's needed. We put her on gluten free right away so she has been gluten free for 2 days now. If we decide to to the biopsy, does she need to go back on gluten or will the short time she's been off not make a difference on the biopsy? Part of me wants her to have the biopsy to see what kind of damage is already done. But I don't want to put her through that if it really isn't needed. Does it make a difference for her medically? Thanks in advance This is all so new and the more I read the more scary it seems.
  8. Hi there, I am new to this and have a couple questions, my 14 yr old daughter has tested positive for celiacs via blood test, her TTG IgA is 234.7( apparently 15 or less is normal?) endomysial antibodies is also positive and IgA 1.4 g/L does this confirm celiacs? Is there a chance she may not have it? She has been referred for a biopsy but that could be months away. What are the chances the biopsy could be negative? really feeling for my girl at the moment, thanks
  9. Iv been getting sicker as I have hiatus hernia where I can't digest my food tidy problem as got worse over the year so bad now I don't want to eat much I'm ill in bed after just eating cereal and a chip sandwich yesterday so now I have sickness and pain in stomach also have the dirohea I'm also only bringing up bile
  10. Hello again, you may have seen my previous thread! I appreciate everyone who gave the kind words! I had my biopsy done today (wasn't the best experience, but wasn't that bad either). The Doctor came in before the operation and asked me some questions. She told me that I wasn't 100% diagnosed and that she suspected what I had. But didn't tell me what. She said a biopsy was the "Golden Rule" for figuring out if you're a Celiac. After the procedure, she didn't talk to me again and I left the hospital soon after. All I got from her was a standard note saying I should make an appointment 10-14 days from now. She also wrote that my esophagus and stomach weren't abnormal. I'm probably worrying over nothing, but I still worry I might have cancer or something else like that. Does it usually take that long for an appointment?
  11. Hello Everyone! I had a blood test back in December and had an ultrasound on January 2nd. This was all due to some weight loss after having gallbladder surgery in 2016. I just chalked it up to not wanting to eating fatty foods afterwards and having smaller portions. I wasn't too concerned, since I felt way better (I was a bit overweight before the surgery.) I had a bit of abdominal pain, but I was told that was normal after surgery. My mother was concerned and so I went to my doctor with her. My doctor said I probably had Irritable Bowel Syndrome (as a side affect from the gallbladder) and ordered me to get some blood work and ultrasound done. The doctor's office called and said we needed to talk about my tests, the receptionist said it wasn't bad. This happened on the day of the ultrasound, so of course I was worried! I scheduled for an appointment with my new doctor the next day (old one sadly retired, had her since I was born). I was nervous that night, but just chalked it up to it not being that serious. Next day I go to the doctor's and she tells me how clear my ultrasound was and how there were no blockages. Few! Next, she told me how my blood work came back normal (cholesterol, iron, hormones, ect), I was so elated! But then, she told me I tested positive for Celiac's Disease. My happiness drained away in an instant, I hadn't heard of the disease before, but knew it wasn't good. She then told me what it was and how it could cause cancers. Next, she said I needed to have a biopsy done to confirm it. I was shocked and afraid. I had thought it was just a vitamin deficiency, nothing this bad. Currently, I'm waiting to get a biopsy done and am remaining on gluten. The thing is, I'm pretty scared! Cancer has run in my family. It killed my Grandmother, my Uncle, and recently my Aunt this past summer. I know celiac disease causes your rates for certain intestinal cancers to go up, and that has me worried right now. I'm afraid I'll have lymphoma when I get my biopsy done. So I was wondering if my ultrasound and blood tests being fine meant I didn't have it. Just having some clarification would make me feel all the better right now. I could really use some kind words and encouragement.
  12. 1st of all my GI is AMAZING. Not only is he a great doc, but he also is just a great guy. We had a great time, LOL!! The findings were: 1) Hiatal hernia 2) Duodenal tissue looked normal, but he took 10 biopsies to be sure. 3) I may have Eosinophilic Esophagitis, which is an chronic allergic/immune response to a certain food (we don't know what it would be), leading to a buildup of the white blood cells eosiniophils. The evidence was from rings in my esophagus that shouldn't be there. Biopsies were taken to evaluate for that. So now I wait. Only I would add another possibility onto my crazy health situation, LOL!!! He was baffled by my positive TTG celiac blood test, if the biopsy comes back negative. But at least they can see that there is SOMETHING going on in there, and that my body is reacting to something. Now we just to see if it's gluten, or if it's something else. He did recommend a 2 week trial of a gluten free diet to see if it helped alleviate any symptoms.
  13. My endoscopy is this afternoon. I'm a little anxious because I just want to get it over with. I honestly think there's a high probability of it coming back negative, but it drives me crazy that I won't know for like a week or two, especially with the holiday. Should they tell me how many samples they took? Anything I should make sure to ask, etc.?
  14. Hi, I have an endoscopy scheduled on Thursday to confirm celiac. I have a positive tTG IGA test but negative EMA. I know they'll take some biopsies and those will take 1-2 weeks to come back, but can they see the damage by sight too? Is it also possible to see absolutely no damage, but then the biopsies come back showing damage? I'm just going crazy over here not knowing, LOL.
  15. So a couple years ago I was tested for celiac... Ttg IgG/IgA were all negative DGA IgG/IgA were all negative AGA IgG: Positive AGA IgA Negative HLADQB1*02 Negative HLADQB1*03:02 Negative HLADQA1*05 Positive Biopsies have all been negative. I suffer from Hashimoto's thyroiditis and I just feel miserable with all the body aches and brain fog. My son was born back in July and I'm just so tired of not feeling well and I really want to finally feel good and enjoy life to the fullest. I'm thinking of asking for my labs to be repeated again and see. I'm just wondering if it is possible for me to still have celiac or if I'm just looking for something that just isn't there because I'm desperate for answers... Appreciate any input!! Thank you
  16. My toddler's blood tests show it's extremely likely that she has Celiac's. Her biopsy to confirm is 2 weeks away and until then we can't change her diet because it could result in a false negative. She is vomiting, bloated, gassy, constipated, grouchy, and I am sure confused as to what the hell is going on. I can't find any helpful articles about how to help ease the symptoms so I'm hoping someone here can give me some insight. Is there anything that can be done to help ease her symptoms while we wait for her biopsy date(other than stop eating gluten because we can't do that)? Or are we all doomed to be miserable for the next 2 weeks?
  17. Celiac.com 09/21/2017 - Current guidelines by the British Society of Gastroenterology recommend that doctors take at least four duodenal biopsy specimens at the time of upper gastrointestinal (UGI) endoscopy when looking for celiac disease. The practice has been shown to increase celiac diagnoses, and to reduced missed diagnoses. The Society recently sought to assess compliance with their own guidelines within their institution. They then sought to apply measures to improve their compliance rate, and to assess the resulting impact on our diagnostic rate for celiac disease. The research team included Nilofer Husnoo; Wafaa Ahmed; and Muhammad Hanif Shiwani. They are variously affiliated with the Urology Department, Sheffield Teaching Hospitals NHS Trust, Sheffield, UK, the Gastroenterology Department, Maidstone and Tunbridge Wells NHS Trust, Tunbridge Wells, UK, and the General Surgery Department, Barnsley General Hospital NHS Foundation Trust, Barnsley, UK. The team performed a retrospective audit of electronic records for patients with no prior celiac diagnosis, who underwent UGI endoscopy with duodenal biopsies between August 2014 and May 2015. They then used the information to raise awareness among endoscopy users at the Society, and conducted a follow-up audit between February and May 2016. They found and registered a total of 924 eligible patients for the first part of the study, and 278 for the second part. The proportion of patients who had ≥4 biopsy specimens submitted increased from 21.9% to 60.8% (p<0.001). The study by the BSG suggests that taking less than four duodenal biopsy specimens can result in missed celiac diagnoses. However, a few simple steps can help doctors avoid such missed diagnoses. Since atypical symptoms are more common in patients these days, and since the lifetime risk of malignancy, especially intestinal lymphoma and other gastrointestinal cancers, is higher in celiac patients, it's important that doctors conduct a thorough investigation when they suspect celiac disease to avoid missing the diagnosis. For the BSG, that means taking 4 or more biopsy samples. Source: BMJ Open Gastro. 2017;4(1):e000140
  18. Celiac.com 07/13/2017 - Until recently, duodenal biopsy was considered the gold standard for diagnosing celiac disease, but that is changing. A number of studies have shown that celiac disease can be diagnosed using serological tests alone, but many clinicians have yet to embrace this approach. In both retrospective and prospective studies, one research team showed that certain IgA-tissue transglutaminase antibodies levels can predict celiac disease in adults 100% of the time. After making some adjustments to the analytical method for measuring the antibody, a team of researchers recently set out to to determine whether such serum tests can reliably diagnose celiac disease in large numbers adult patients without the need for small bowel biopsy. The research team included GKT Holmes, JM Forsyth, S Knowles, H Seddon, PG Hill, and AS Austin. They are variously associated with the Royal Derby Hospital, the Department of Pathology, and the Derby Digestive Diseases Centre at the Royal Derby Hospital in Derby, UK. For their study, the team conducted a retrospective analysis in an unselected series of 270 adult patients who underwent small bowel biopsies and the measurement of serum IgA-tissue transglutaminase antibody levels from 2009 to 2014. At an IgA-tissue transglutaminase antibody cut-off greater than 45 U/ml (>8×upper limit of normal+2SDs) the positive predictive value for celiac disease in this cohort was 100%; 40% of cases were above this cut-off. The team found that they could use IgA-tissue transglutaminase antibody levels to reliably diagnose celiac disease in a high proportion of these adult patients. This study adds to the growing body of evidence that supports the diagnosis of celiac disease without a mandatory small bowel biopsy. As a realist of these findings, the study team has changed the diagnostic guidelines for their center, and will now make celiac diagnosis based on cut-off levels of IgA-tissue transglutaminase. This is exciting news. For many, many years, the biopsy was considered the gold standard for diagnosing celiac disease. By eliminating biopsies in favor of IgA-tissue transglutaminase levels, diagnosing celiac disease could become much easier and even cheaper. Do you have celiac disease? Did you receive a biopsy for diagnosis? How do you feel about celiac diagnosis without biopsy? Share your thoughts below. Source: Eur J Gastroenterol Hepatol. 2017 Jun;29(6):640-645. doi: 10.1097/MEG.0000000000000841.
  19. Hello! This is my first post. My big question is about Gliadin IgG. I was tested in 2004 and had a high positive at 64 (24 being positive). My Dr at the time told me I should cut back on gluten and diagnosed me with Sjogrens Syndrome (even though I was B12 deficient, anemic, and having such bad acid reflux that I would get sores all over the back of my throat). Recently I was diagnosed with Lupus (SLE) and asked to be tested for Celiacs. My Gliadin tests came back negative, but TtG IgG was 6 (6-9 weak positive). TtG IgA was 1.4. Tomorrow I get the endoscopy and biopsy. I'm so confused as to why I tested so high for Gliadin IgG and now it is negative. I am not gluten free. The Dr said she has no idea and they are just trying to figure it out. Ive read Celiacs does not go into remission unless you are gluten free. Does anyone know how I could have been positive 12 yrs ago and now be negative?
  20. 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.
  21. 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.
  22. 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?
  23. 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!
  24. 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)
  25. 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!