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Found 75 results

  1. I have my Endoscopy -finally- scheduled for February 5th. Long road with some uninformed doctors. I've been gluten-free/DF for about 3 months. I know I have to do a Gluten challenge. Should I start today? How much Gluten per day Should I be having? And a month is enough for the endoscopy correct? How long do results typically take? My follow up with the doctor is February 20th, not sure it's enough time. And should I stick with eating gluten until this check up? Also, should I go ahead and eat dairy again as well? I know it's definitely a problem because after accidentally having it recently I had some reactions. Or Should I mostly be concerned with getting the Gluten in my system? Sorry for so many questions Thank you!!
  2. Celiac.com 08/30/2018 - Celiac disease is a disorder characterized by a clinical syndrome of intestinal malabsorption and a characteristic though not specific histological lesion consisting in total, subtotal or partial small-bowel villous atrophy (predominating in the proximal segments). A correct gluten-free diet results in clinical and histological improvement(1,2). It has become increasingly apparent that the prevalence of celiac disease is higher than previously thought, and that this is mainly because of increasing awareness of atypical, mildly symptomatic, or silent cases(3). Therefore, many patients have upper gastrointestinal endoscopy as an initial investigation, which provides an opportunity to perform a biopsy in the second portion of the duodenum. The role of endoscopy in diagnosing celiac disease It has long been known that celiac disease can produce changes in the appearance of small intestine on barium contrast radiographs, one such change being so-called “loss” of duodenal folds. However, over the last two decades it has been recognized that a number of changes in the duodenum clearly associated with celiac disease can be identified endoscopically. Because it is now understood that the manifestations of celiac disease are wide and variable, and that the disease is more common than recognized in the past, the clinical significance of these endoscopic observations has been greatly amplified. Awareness of these endoscopic features may alert the endoscopist to the presence of celiac disease and the need for duodenal biopsies in patients undergoing endoscopy for symptoms unrelated to the disease as well as those with vague, non-specific manifestations. The endoscopic features in the duodenum that are well-established as markers for celiac disease include: loss of folds; scalloping of folds; mucosal mosaic pattern; whilst less commonly described findings include a visible vascular pattern and micronodularity in the duodenal bulb. 1. Loss of folds “Loss” of folds is defined as an obvious reduction in height or number of folds in the second portion when viewed with maximal air insufflation. The sensitivity and specificity of this marker range from 73 to 88% and from 83 to 97% respectively (4,5). 2. Scalloping of duodenal folds Scalloping occurs when multiple grooves run over the apex of a duodenal fold. Grooves in the mucosa between folds have also associated with celiac disease and likely a manifestation of the same process that leads to scalloping. The sensitivity and specificity of this marker are 88% and 87% respectively (6,7). 3. Mucosal mosaic pattern Mucosal mosaic pattern may be recognized both in the duodenal bulb and in the second portion of the duodenum, and its assessment may be easily performed by chromoendoscopy. Unfortunately, the sensitivity of this marker is quite low (57%) (8). 4. Micronodularity in duodenal bulb This marker is quite frequent in childhood and adolescent patients, but it can be also recognized in young adults 9-11. 5. Visible vascular pattern This marker describes a prominence of underlying duodenal blood vessels in patients with celiac disease. Unfortunately, this is the least sensitive endoscopic marker in all studies in which it was specifically evaluated (6,12,13). All these markers are helpful in recognising celiac disease. Moreover, in some cases specific endoscopic features can be associated with specific histological damage and may be associated with the clinical form of the disease. We found in fact that endoscopic appearance of the duodenum may be predictive of histological damage grading. Moreover, we showed that in young patient with subclinical/silent celiac disease there is a greater probability of finding slight/mild endoscopic abnormal/mild histological damage (11). Unfortunately, an endoscopic marker suspected for celiac disease itself is not specific for celiac disease. For example, looking at scalloping, Shah, et. al., described 13 cases in which scalloping of duodenal folds was not caused by celiac disease but due to other causes (HIV-related infection, tropical sprue, giardiasis, eosinophilic gastroenteritis)(14). On the other hand, the presence of one or more endoscopic markers increases the sensitivity and specificity ranging from 87.5 to 94% and from 99 to 100% respectively (12,15). There is non-existing classification of endoscopic lesions in celiac disease. However, I think that it may be graded according to some simple considerations. Celiac disease is considered a crianial-caudal disease which affects primarily the proximal segments (first the duodenal bulb and then the second and third duodenal portions) and then the distal segments of the small bowel (first jejeunum and then the ileum). Therefore, we may hypothesize that endoscopic damage occurs first in the duodenal bulb and then in the distal tracts of the duodenum. For this reason, and according to other endoscopists in Italy, I proposed the following classification in 2002(11): a. Slight/mild endoscopic damage: micronodular bulb, granular mucosa of the second duodenal portion, scalloping of duodenal folds, reduction of duodenal folds; b. Severe damage: “mosaic” pattern of the duodenal mucosa, visible vascular pattern, loss of duodenal folds. The effectiveness of this grading system was confirmed in the same study. In fact we found that the so-called “slight-mild endoscopic damages” seen at endoscopy was associated with a mild-moderate histological damage (p<0.005), while the so-called “severe endoscopic damages” was related to severe histological damage (p<0.0005). Unfortunately, no Consensus Conference on celiac disease has discussed this problem yet. New endoscopic methods Several new endoscopic techniques have been recently developed to increase the sensitivity and specificity of endoscopy in diagnosing celiac disease. a. “Immersion” technique. The “immersion” technique consists in observing duodenal mucosa using a high-resolution, high-magnifying (x2) videoendoscope that observes the villous architecture with a water film. This approach seems to be effective in allowing the visualization of duodenal villi and the detection of total villous atrophy(16). A recent study found that this approach is highly accurate in detecting total villous atrophy in suspected celiac cases, and it seems both accurate and cost-sparing to diagnose celiac disease in subjects with marked duodenal villous atrophy, having a sensitivity, specificity, and positive and negative predicting values of 100%17. Moreover, this approach also seems to be effective in detecting patchy villous atrophy in celiac patients with patchy lesions (18). b. Zoom endoscopy This technique provides a very impressive magnification capability of x115. This approach may allow the macroscopic detection of unrecognised villous atrophy in patients with unsuspected celiac disease. Badreldin, et. al., found recently that zoom endoscopy may be valuable in assessing degree of villous atrophy, having a positive predicting value of 83% and a negative predicting value of 77% in detecting villous atrophy (19). c. Double-balloon endoscopy (DBE) This technique will become probably the best endoscopy technique in investigating small bowel. It allows high-resolution visualization, biopsies and therapeutic interventions in all segments of the GI tract. DBE is a safe and feasible diagnostic and therapeutic tool for suspected or documented small-bowel diseases. However, it requires a long time for small bowel exploration (about 70 minutes from the oral route and about 90 minute from the anal route) and requires expertise personnel to obtain better results 20. At present, the best candidates for the procedure appear to be those with obscure GI bleeding. d. Wireless capsule endoscopy Celiac disease is an inflammatory disease that involves the entire small intestine. Even in the 1960s was documented, by using peroral biopsies, that the inflammatory atrophic process can extend a variable distance down the small intestine, not uncommonly involving the ileum(21). These data have been recently confirmed by endoscopic studies, that found ileal inflammatory changes predicting villous atrophy in duodenal biopsy specimens(22). Wireless capsule endoscopy is a new effective and easy method to investigate small bowel. The M2A video capsule endoscope (Given Imaging LTd; Yokneam, Israel) is a wireless capsule (11 mmx27 mm) comprised a light source, lens, CMOS imager, battery and a wireless transmitter. The slippery out side coating of the capsule allows easy ingestion and prevents adhesion of intestinal contents, while the capsule moves via peristalsis from mouth to anus. The battery provides seven to eight hours of work in which the capsule photographs two images per second (between 50,000-60,000 images all together), which are transmitted to a recorder which is worn on the belt. The recorder is downloaded into a computer and seen as a continuous video film. Since its development additional support systems have been added, a localization system, a blood detector and a double picture viewer. All of this is intended to assist the interpreter of the film and to shorten the reviewing period. The full range of indications for CE became apparent with time. The initial device was invented to address for a better diagnostic tool for small bowel pathologies (such as obscure gastrointestinal bleeding or Crohn’s disease)(23). In light of this high specificity for the diagnosis of small bowel diseases, it is considered that capsule endoscopy may be of value in the diagnosis of celiac disease for patients with a positive endomysial or tissue transglutaminase antibody and who are unable to or unwilling to undergo EGDscopy(24). The very important limit of this new technique in celiac disease is represented by the absence of histological-proven damage. It is recognised that the endoscopic signs of villous atrophy are not sensitive for the lesser degrees of villous atrophy, so partial villous atrophy may be missed by this approach(13). On the other hand, I think that the patients who appear to be ideal candidates for capsule endoscopy are those patients who fail to respond to a gluten-free diet, or who develop alarm symptoms while on a gluten-free diet. These patients often undergo extensive radiologic, and sometimes, surgical evaluation, because of concern for the development of complications (such as lymphoma(25,26) or ulcerative jejunitis(27). It is clear that lesions detected by capsule endoscopy in this high-risk group will require further evaluation of these abnormalities through biopsy. Capsule endoscopy may thus be used to select patients to undergo enteroscopy(28) or, more probably in the near future, double-balloon endoscopy(29). The role of endoscopy in the follow-up of celiac disease Data on small-intestinal recovery in patients with celiac disease are scarce and contradictory. This is especially the case for adult patients, who often show incomplete histological recovery after starting GFD. On the other hand, there are very few data about the endoscopic recovery on GFD. We recently conducted a two-year prospective study on 42 consecutive adults with newly diagnosed celiac disease. All the patients underwent EGDscopy and small-bowel biopsy. A normal endoscopic appearance (absence or mucosal irregular findings, normal duodenal folds) was found in 76.2% after two-year on a GFD. Subdividing the patients according to age, patients aged from 15 to 60 years showed significant improvement within 12 months but faster in patients in patients <45 years, whereas the improvement in endoscopic findings in patients older than 60 years was not statistically significant even 24 months after starting GFD. On the contrary, histological recovery was much more slower, since only younger patients (5-30 years) showed significant improvement of histology within 24 months(30). These data showed for the first time that endoscopic recovery is faster than histological recovery after starting GFD. Conclusive Advice A number of studies have demonstrated a strong correlation between the endoscopic duodenal findings and celiac disease. Furthermore, absence of specific features suspected from celiac disease does not exclude celiac disease and specimens should always be obtained when there is a suspicion that the disease may be present. For this reason, capsule endoscopy should be not recommended as first endoscopic step in searching celiac disease, but it may be best used to recognize endoscopic recovery and to exclude complication in celiac patients on GFD. The last question is: How long should we continue with endoscopic and histological follow-up? Looking at the results recently obtained from our group, my advice on follow-up could be summarized as follows: patients aged under 30 years should undergo endoscopic/histological assessment after one year; patients aged 30-45 years should be reassessed after two years; and patients aged 50 years and over should be reassessed after two years, including an immunohistological assessment to exclude refractory celiac disease. References: 1) Martucci S, Biagi F, Di Sabatino A, Corazza GR. Coeliac disease. Digest Liver Dis 2002;34 (suppl. 2): S150-S153. 2) When is a celiac a celiac? Report of a working group of the United European Gastroenterology Week in Amsterdam, 2001. Eur J Gastroenterol Hepatol 2001;13: 1123-8. 3) Tursi A, Giorgetti GM, Brandimarte G, Rubino E, Lombardi D, Gasbarrini G. Prevalence and clinical presentation of subclinical/silent coeliac disease in adults: an analysis on a 12-year observation. Hepato-gastroenterol 2001; 39: 462-4. 4) Brocchi E, Corazza G, Caletti G et al. Endoscopic demonstration of loss of duodenal folds in the diagnosis of celiac disease. N Engl J Med 1988;319: 741-4. 5) Mc Intere AS, Mg DP, Smith JA , Amoah J, Long RG. The endoscopic appearance of duodenal folds is predictive of untreated adult celiac disease. Gastrointest Endosc 1992;38: 148-51. 6) Corazza GR, Caletti GC, Lazzari R et al. Scalloped duodenal folds in childhood celiac disease. Gastrointest Endosc 1993; 29: 543-5. 7) Smith AD, Graham I, Rose JD. A prospective endoscopic study of scalloped folds and grooves in the mucosa of the duodenum as sign of villous atrophy. Gastrointest Endosc 1998;47: 461-5. 8) Stevens FM, McCarthy CF. The endoscopic demonstration of coeliac disease. Endoscopy 1976;8: 177-80. 9) Brocchi E, Corazza GR, Brusco G, Mangia L, Gasbarrini G. Unsuspected celiac disease diagnosed by endoscopic visualization of duodenal bulb micronodules. Gastrointest Endosc 1996;4: 610-1. 10) Vogelsang H, Hänel S, Steiner B, Oberhuber G. Diagnostic duodenal bulb biopsy in celiac disease. Endoscopy 2001;33: 336-40. 11) Tursi A, Grandimarte G, Giorgetti GM, Gigliobianco A. Endoscopic features of celiac disease in adults and their correlation with age, histological damage, and clinical form of the disease. Endoscopy 2002;34: 787-92. 12) Niveloni S, Fiorini A, Dezi R et al. Usefulness of videoduodenoscopy and vutal dye staining as indicators of mucosal atrophy of celiac disease: assessment of interobserver agreement. Gastrointest Endosc 1998;47: 223-9. 13) Dickey W, Hughes D. Disappointing sensitivity of endoscopic markers for villous atrophy in a high-risk population: inplication for celiac disease diagnosis during routine endoscopy. Am J Gastroenterol 2001;96: 2126-8. 14) Shah VH, Rotterdam H, Kjotler DP, Fasano A, Green PH. All that scallops is not celiac disease. Gastrointest Endosc 2000;51: 717-20. 15) Dickey W, Hughes D. Prevalence of celiac disease and its endoscopic markers among patients having routine upper gastrointestinal endoscopy. Am J Gastroenterol 1999;94: 2182-6. 16) Cammarota G, Martino A, Pirozzi GA et al. Direct visualization of intestinal villi by high-resolution magnifying upper endoscopy: a validation study. Gastrointest Endosc 2004;60: 732-8. 17) Cammarota G, Cesaro P, Martino A et al. High accuracy and cost-effetciveness of a biopsy-avoiding endoscopic approach in diagnosing celiac disease. Aliment Pharmacol Ther 2006;23: 61-9. 18) Cammarota G, Martino A, Di Caro S et al. High-resolution magnifying upper endoscopy in a patient with patchy celiac disease. Dig Dis Sci 2005;50: 601-4. 19) Badreldin R, Barrett P, Wooff DA, Mansfield J, Yiannakou Y. How good is zoom endoscopy for assessment of villous atrophy in coeliac disease? Endoscopy 2005;37: 994-8. 20) Di Caro S, May A, Heine DG, Fini L et al. The European experience with bouble-balloon enteroscopy: indications, methodology, safety, and clinical impact. Gastrointest Endosc 2005;62: 545-50. 21) MacDonald WC, Brandiborg LL, Flick AL et al. Studies of celiac sprue. IV. The response of the whole length of the small bowel to a gluten-free diet. Gastroenterology 1964;47: 573-89. 22) Dickey W, Hughes DF. Histology of the terminal ileum in coeliac disease. Scand J Gastroenterol 2004;39: 665-7. 23) Eliakim R. Wireless capsule video endoscopy: three years experience. World J Gastroenterol 2004;10: 1238-9. 24) Cellier C, Green PH, Collin P et al. The role of capsule endoscopy in coeliac disease: the way forward. Endoscopy 2005;37: 1055-9. 25) Green PH, Fleichauer AT, Baghat G et al. Risk of malignancy in patients with celiac disease. Am J Med 2003;115: 191-5. 26) Cellier C, Delabasse E, Helmer C et al. Refractory sprue, coeliac disease and enteropathy-associated T-cell lymphoma. French Coeliac Disease Study Group. Lancet 2000;356: 203-8. 27) Green JA, Barkin JS, Gregg PA et al. Ulcerative jejunitis in refractory celiac disease: enteroscopic visualization. Gastrointest Endosc 1993;39: 584-5. 28) Gay G, Delvaux M, Fassler I. Outcome of capsule endosocpy in determining indication and route for push-and-pull enteroscopy. Endoscopy 2006;38: 49-58. 29) Yamamoto H, Kita H, Sunada K et al. Clinical outcomes of double-baloon endoscopy for the diagnosis and treatment of small-intestinal diseases. Clin Gastroenterol Hepatol 2004;2: 1010-6. 30) Tursi A, Brandimarte G, Giorgetti GM. Endoscopic and histological findings in the duodenum of adults with celiac disease before and after changing to a gluten-free diet: a 2-year prospective study. Endoscopy 2006; 38: in press.
  3. New here! In short, I’m a 22yo female with chronic nausea/vomiting, loss of appetite, painful diarrhea, 90+ pound weightloss in a bit over a year, tingly hands/feet, awful fatigue, and stomach pains with a history of anxiety/depression dating back to childhood, but absolutly no other previous conditions. I think there’s a possibility I have celiac, but my doctors don’t seem to be too helpful communicating with me the meaning of the tests results. They pretty much just said “hmmmm...it could be, but maybe not” which to me is a lame answer. I was hoping someone could take a look at these results and interprete if it sounds like it could be Celiac or not. igA- 595 mg/dL *went up from 555 three weeks ago if that means anything, they accidentally ordered the same test twice Ttg- 1 U/mL HLA DQ2- positive HLA DQ8- negative Endoscopy/colonoscopy biopsies- Duodenal mucosa with patchy mildly increased intraepithealial lymphocytes, preserved villous architecture Gastric oxyntic mucosa with focal mild chronic inflammation focal active colitis in right colon *I don’t know if this is relavent, but my bilirubin is slightly elevated I’m still waiting on results from deamidated gliadin peptic antibodies igA igG. I was also wondering if anyone here is a cigarette smoker and if that delayed diagnosis, I read that somewhere, and I do smoke maybe a pack and a half a week as I have been for the last 5 years (symptoms started a year and a half ago). What do yas think? Should I cut out the gluten? Right now, while I don’t eat a lot, when I do it’s definilty not gluten free.
  4. 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 :(.
  5. Hi everyone! i have just been told I have to have an endoscopy and colonoscopy, not because of any gastro symptoms but because of non iron anaemia. These tests seem a bit invasive and maybe a little premature ? I do have the coeliac gene but apparently so do 33% of the population. Why would it be so important for me to go straight to this? Any help to understand/convince me appreciated
  6. Hi everyone! Brand new here !! Still trying to figure out how this all works So, a few months ago I started feeling absolutely terrible. Muscle Pains, palpitations and tingling sensations, as well skin sensitivity and rosacea. I did not notice at the time that it was related to food until I had a few "poisonings" that I thought came from shellfish. I have always suffered from severe C but never D. Anyways.. I was incredibly sick for about 3 months and I got tested for everything under the sun: even lyme disease, toxoplasmosis etc. Then I got a brain scan that showed I had T2 non specific white matter lesions that could be consistent with MS ( which of course scared me A LOT) These were seen by 3 neurologists who thankfully ruled out MS, but also did not give me a reason for them. Interestingly enough, I got a 23 and me test kit as a gift for Christmas, and when it came back, it showed I had a variant in the HLA-DQA1 which increased my chances of developing celiac. When I saw that it was like a light bulb came on immediately !! . I just knew that it had to be related to gluten at that point. So, I went to at least 3 doctors who completely dismissed me ( one said those tests were not accurate at all , another said my symptoms were psycosomatic and refered me to a psychiatrist.. ) until finally I had one doctor send me for testing. Upon finding my ttg A elevated and the EMA positive, she refered me to a gastroenterologist to get more tests. This gastroenterologist sees my husband for his Chron's Disease and he is very good for that, but when I showed him my ttgA result and the EMA, he said he did not believe I had Celiac because I did not have D, only C, which put his celiac's expertise in question IMHO. ANyways, he repeated all the tests, and added more including genetic testing. Below are the results. He now says he is sure I have celiac but won't give me the diagnosis unless I get a biopsy to confirm. I asked, "so what else could the tests mean?" and he said, " I'm sure you have celiac, but I need the bipsy before I impose this lifelong diet on you " My insurance is not very good and it will cost me over $1000 to have this done, which is steep for me at the moment. I know that it is a personal choice and I am not looking for any medical advice, but I want to know people's opinions on wether you guys think it is really necessary. All my tests seem to point to Celiac's direction and makes me wonder if maybe I should look for another doctor, or just start on the gluten-free diet, ( I've tried to lower my gluten consumption but still kept eating it to prepare for the endoscopy" ) Or wether I should get it done to establish a baseline. I worry that the exam will be a false positve, seeing how unacurate they can be, and also lowering gluten could maybe alter it ? Finally, if anyone knows a Dr in the Miami / Fort Lauderdale area that specializes in Celiac I would reallly appreciate it Sooo sorry this got soo long, but i appreciate any advice TEST RESULTS: TISSUE TRANSGLUTAMINASE IgA - 9 Ref: <4 TISSUE TRANSGLUTAMINASE IgG - 15 Ref: <6 GLIADIN (DEAMIDATED) IgA - 21 Ref: <20 GLIADIN (DEAMIDATED) IgG - 38 Ref: <20 ENDOMYSIAL ANTIBODY SCR AMD (IGA) W/REFL TO TITER Positive ENDOMYSIAL ANTIBODY AMD TITER - 1:5 Ref: <1:5 IMMUNOGLOBULIN A: 135 Ref: 81-463 HLA TYPING FOR CELAIC DISEASE: •HLA DQ2: POSITIVE •HLA DQ8: NEGATIVE •HLA VARIANTS DETECTED: HLA DQA1 : 02 HLA DQA1 : 05 HLA DQB1 : 0202 HLA DQB1 : 0301
  7. Can someone please tell me about my results attached? My Doctor was a little vague. 1. Gastric, The section show Amtrak mucosa with faveolar hyperplasia, interstitial oedema and smooth muscle proliferation in the laminate proprietary. Inflammatory cells are spares. The gastric body mucosa is normal. No helicobacter can be seen. Bile reflux and NSAIDS can give this pattern of gastritis. There is no evidence of intestinal meta plasma, dysplasia or malignancy. 2. Duodenial the sections show small intestinal mucosa with normal billows architecture. There is no significant inflammation. No granulomas or parasitis are seen. There is no evidence of malignancy. thoughts?
  8. Looking for advice and also to help those undergoing testing. I went to my general practitioner back in August with nausea, bloating, diarrhea, migraines, sluggishness, and a feeling of general unwellness. I was eating a gluten diet at the time. My doc ordered the dual antigen screen- it came back positive for celiac. He set up an appointment for me with a specialist. I called the specialist and they could get me in 8 weeks later. I asked the specialist if I went gluten free is this would affect any testing. They said “no” that I was in a gluten diet for so long I would be fine. However, 8 weeks later, the blood test showed no celiac- my results were normal after 8 weeks on a gluten free diet. I felt great, for me the turnaround was almost immediate- in a week or 2 I felt amazing. But that didn’t help with getting accurate results (mostly wanted to rule out another autoimmune disorder). I then went on gluten for 7 weeks (I ate a lot of gluten- like at least a bagel a day and much more on some days- I wasn’t messing around, I wanted an accurate diagnosis)and repeated the blood test at 7 weeks. It came back a very weak positive for deamidated gliadin abs iGg. I then underwent a endoscopy because the doc said that number, although positive, was not high enough to go off of. The endoscopy came back normal- however, the doc noted that higher levels of antibodies were found but not in the “abnormal range.” So, they were present, just not in crazy levels. I then kept eating gluten- I should note my doctors SUCK (could do a whole other post just on this- I have been my own doctor pretty much). I just took another blood test at 3 months eating gluten. My levels are now SUPER high for deamidated Gliadin abs IgG. The doc is confident I have celiac. Question is- my doc is so bad, I wanted to check here to make sure that it indicates celiac. I also wanted to help others as I know there’s lots of conflicting information on how long to do a gluten Challenge. For me, it took 3 months. My gut tells me I am early stage celiac- I don’t have full blown damage yet, but if I keep eating it I am sure it will do some damage. Just wanted to highlight this as if your case isn’t super bad yet, you may have to eat gluten longer- everyone is different. Any advice on my results would be awesome!
  9. 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.
  10. 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.?
  11. 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.
  12. Celiac.com 11/30/2017 - Talk about handling a celiac disease diagnosis in style. This past summer, "Us" star Mandy Moore showed us how its done, when she documented the process of working with her doctor to determine if she had celiac disease. She even posted a photo of her endoscopy visit for her Instagram followers. Moore captioned the post: "Grog city. Just had an upper endoscopy to officially see whether or not I have celiac (only way to officially diagnose)…things are looking 👌)." Later, and also on Instagram, she revealed that she had been diagnosed with celiac disease. "Well, this definitely takes the (now gluten free cake) for bummer news," she wrote on her Instagram story at the time. "Any celiac sufferers out there with any helpful tips??" Maybe consider looking at Celic.com for helpful tips and information on living with celiac disease and eating gluten-free? Later, she posted another message, thanking her fans for sharing their knowledge with her, adding that there were "so many lovely humans out there. My heart is full." Moore seems to be embracing the realities of a gluten-free diet. Later, in an Instagram post celebrating her engagement to Taylor Goldsmith, Moore thanked her friends and family for their support, and noted that she planned to "enjoy some delightful gluten-free tea sandwiches (and 🥂) like ladies do." Best of luck to Mandy Moore in dealing with her new found celiac disease diagnosis.
  13. Hi, I just got the blood test for celiac done and the results came back positive. My mother and aunt both are diagnosed with celiac so it is likely I have it too. My doctor said the endoscopy will take a while to get (on the order of months) and that I should start a gluten free diet immediately, then go back on gluten for the six weeks prior to test. But I heard that the reaction to gluten was worse for celiacs when they followed a gluten free diet for a while and then reintroduced it. I have a lot of symptoms that are likely caused by celiac, but I've been dealing with them for a year or so, so another few months isn't a huge deal, although of course I would rather avoid them. So if it better if I stay on a gluten diet for the next few months until the endoscopy instead of eliminating gluten and then reintroducing it? My other question is if I stay on a gluten diet from now until the endoscopy, will consuming less gluten (1 meal a day instead of 3) cause less damage and symptoms? In other words, is the severity of the symptoms and damage dependent on the amount ingested or is it the same no matter how much is ingested if I'm eating it regularly? And if I do reduce the amount, should I increase it again in the six weeks prior to the test?
  14. I recently found out I have the DQ8 hetero gene. Because my life was being affected so drastically, I discontinues eating gluten and have started to feel myself. about 90% of my symptoms have resolved during the past 2 weeks of eating gluten-free. Now, I need to decide whether I should continue with a gluten challenge and test for antibodies and do the endoscopy/biopsy. I am one that would be unsettled not knowing whether or not I have Celiac. Does anyone have advice on whether or not I should do a gluten challenge and do further testing to pursue a diagnosis?
  15. Hello, I am a young man dealing with some Thyroid issues, along with some general digestive issues. A long time ago I was tested for Celiac disease via blood and was told I had it, but then had an endoscopy to confirm, and actually I got the results back, but I could never really decipher what they meant, so i just assumed I had it to be safe. I'm taking a much larger role in the control of my health now, and I deem it necessary to be less assumptive and to make sure I have concrete facts now. Under "Clinical History" Abdominal pain/bowel issues/Wt loss. R/O Celiac. Findings: Mild gastritis. EGD. Not sure what to make of that. Under "Final Pathologic Diagnosis" A. Duodenum Biopsy; Mature benign small bowel mucosa with a normal villous architecture. B. Stomach Biopsy; mild chronic gastritis, Helicobacter Immunoperoxidase stain is negative for Helicobacter organisms(Controls appropriate.) c. Esophagus Biopsy, Chronic Esophagitis with Rare Eosinophils. ------- If anyone can decipher and elaborate on any of this, I would appreciate it? Do I have Celiac disease? Anything else anyone notice to be relevant? Thank you!
  16. Hello everyone! My son is 6 years old and he is very small. He is the lower 5% of his age group for height and weight. He will be 7 years old on November 2nd and he only weighs 41pounds. I don't think he has gained weight in 2-3 years. He is a picky eater...very picky! He does not even like ice cream. He was diagnosed with hypothyroidism, which explains his short stature. He has been on synthroid for 6 months and is doing great. I do not know if he has hashimotos as he has not been tested for that. His endocrinologist did a celiac blood panel despite no digivestive issues (only poor appetite) or family history of celiac. His labwork is the following... DUAL AG SCREEN 31 (ABNORMAL normal is 0-19) TISSUE TRANSGLUTAMINASE IGA 0 TISSUE TRANSGLUTAMINASE IGG 1 IGA IMMUNOGLOBULIN ASSAY 65 DEAMIDATED GLIADIN IGA 62 (ABNORMAL normal is 0-19) DEAMIDATED GLIADIN IGG 3 ENDOMYSIAL ANTIBODY IGA <1:10 He only had two abnormal labs. Endocrinology told us to go to GI and GI did a scope on Monday. We are still waiting on biopsy results. The GI doctor said the scope looked great visually, but biopsy will be the final answer. What do y'all think? Can someone have celiac with mostly negative blood work? How accurate is the blood Work? What are the chances of this biopsy being positive? I feel like I have been waiting a lifetime for these results. Doctor said if biopsy is negitive, we should repeat blood work in two years.
  17. Hello, I'm hoping someone will be able to help. The short question is on how to convince my doctor of (or research on) the need for an endoscopy with negative blood work results... The background: I'm in my late 30s, w annoying/severe digestive discomfort for more than a decade, which a GI a few years ago semi-diagnosed as IBS without doing any real investigation. More recently I've had debilitating fatigue, severe anxiety, and several other symptoms, and recently realized it could be celiac when talking to a friend who'd been diagnosed in his 40s last year. My regular dr is usually quick and thorough in ordering tests. I asked her for celiac tests about 3 months ago, and they came back negative (the panel included: Deamidated Gliadin peptide Ab IgG, Tissue Transglutaminase Ab IgA, and total IgA). At that point, I was so sick, didn't know when her referral to the GI would go through, and so decided to try going gluten-free. It's been a huge, dramatic change. I know that I shouldn't have stopped gluten before the full testing process, but I have a small child and had just gotten so fed up with being sick and didn't know whether it would be months and months longer to see GI. Finally saw GI last week. Talked to her resident for some time, then she came in and immediately told me I have IBS, that there is absolutely no way I could have celiac with negative blood work. I knew that wasn't true, and I stood my ground, but she was dismissive and arrogant and completely refused to order a scope (and said that in her hospital it would be a 6 month waiting time anyway). I've been glutened a couple of times since going gluten-free 10 weeks ago and was far sicker than when eating gluten all the time, and for a week each time. Definitely can't do a gluten challenge. So my problem is this: the GI said that my regular dr can order me an endoscopy, although it's not yet clear whether it'll be covered (I'm in Canada), but my reg dr is reluctant because she's deferring to the GI's opinion. She was open to ordering the scope if my genetic tests were positive, but getting the results is weeks away. Basically, I want an endoscopy asap because in many places I've read that damage can take longer than 10 weeks to go away, but I don't want to wait months and have evidence gone. Does anyone have any research they could point me to illustrate the need for endoscopy w negative blood work? (I really like my reg dr for everything else, so don't want to change to a different one, and the GI appt took months to get, so finding another one isn't exactly an option right now because of the window of time since I stopped gluten.) In some ways I'm ok with having no diagnosis, since going gluten-free has literally given me hope that I didn't think I'd ever have, but I also have reasons (including my child's health) for wanting to know definitively... Also, should I have also gotten ttg igg and Deamidated gliadin iga? The GI dr offered to do EMA now, but with a gluten challenge which I physically cannot do... Many thanks!!
  18. 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?
  19. Hi guys, tomorrow is my endoscopy what should I expect? They didnt really tell me. Do they fully sedate you or is it more like a twilight zone? How long does it take? How long will I feel loopy after? Thanks!
  20. Hello all! As you can see, I'm new here. I read around the forum and I haven't been able to pin point a similar post so I figured I would post. I recently had a blood test for Celiacs that came back with "strong markers". I've been only experiencing stomach problems for about a year and a half now. A bit backstory. I was overweight for a long time, so I started eating low carb (I didn't know it was low carb at the time). I lost 60 pounds from this in a short period of time. My iron got low, but doctors told me this was due to the rapid weight loss. I lived in England for a while and traveled and came home and got together with my now fiancé. We decided we wanted to lose more weight. We went on a very strict low carb diet for about 3 months. After that it would be on and off for a while. Every time I would start eating carbs, though, my stomach would be in intense pain, bloating, and would create nausea. I assumed this was because I stopped eating carbs for so long, that my body saw it as foreign at this point. My fiancé, who had also been eating low carb, would also get this bloat and sometimes pain, but nothing like me. I saw a GI person, got a sonogram, it came back negative, but never went for blood testing. It has been a year since then and the only relief I ever get is when I am on my low carb diet. I know a large percentage of carbs and gluten-containing foods go hand and hand. I developed anxiety this past summer, about the same time as my fiancé. We dabbled in drugs a few times around this time too, the exact time the anxiety started. I also passed out twice, and was told after that I had static hypotension, which are aligned with many symptoms of a Celiacs person eating gluten. As you can see, a lot of these symptoms go hand and hand. I have zero deficiencies in everything else. My doctor wants me to now go for an endoscopy/biopsy, and I have two concerns. 1) I am extremely nervous to endure the anesthesia, due to my blood pressure. My general practitioner said although my BP isn't technically textbook low, it is still on the lower side in conjunction with the static hypotension, and to stay away from antihistamines, medicines that alter heart rate, etc. I know they monitor you closely during these things, but I was wondering if anyone had any advice and if someone has endured this procedure with 'low blood pressure' or anesthesia in general with it. 2) As you can see, a lot of my "celiac symptoms" go very closely hand and hand with events in my life, so I'm not sure how I can make sure, 100% without a doubt, that Celiacs is what I have before I change the course of my life. As you can see, I am super paranoid LOL I work with medical malpractice on a daily basis, and through experience myself, have a big distrust for doctors. Thanks guys!!
  21. Hi everyone, I'm new here but hoping you can all help me. A bit of background: I've recently been referred to a private gastroenterologist for stomach pains, blood in stool, and a constant flux from constipation to diarrhoea amongst other things. The only other time I've experienced this was 5/6 years ago when over the space of 18 months to 2 years I lost a lot of weight and had extreme bouts of anxiety, skin changes (rashes across my cheeks), mouth ulcers and other disconcerting symptoms. Rather foolishly, despite never having heard of coeliac disease, I thought my best treatment was to simplify my diet, which meant I cut out gluten in the process. I did go to my GP about the weight loss and rashes but no treatment was given and coeliac disease was not mentioned. I've now been strictly gluten free for 4/5 years with no reintroduction - I tried but felt awful. Fast forward to now and I've been having bowel pain since the summer. My gastroentorologist took the following blood tests all while I am still eating a strictly gluten free diet. He said this is a negative for celiac disease, but I'm interested in what each part means and whether these shed any other insight into my poor bowels! Grateful for any view you can provide. Results: Anti Endomysium (IgA) = negative Anti- Tiss. Transglutaminase IgA = 3.7 units/ml (Range <3 u/ml = negative; 3-5 u/ml = borderline; >5 = positive) Deamidated Gliadin IgA = 1.0 u/ml (Range <10 = negative; 10-15 = borderline; >15 = positive) Deamidated Gliadin IgG = 11.2 u/ml Range: <10 = negative; 10-15 = borderline; >15 = positive Appreciate any input you can provide - thank you in advance!
  22. I was diagnosed with Celiac Disease back in October through blood work. I have an appointment with Gastroenterology at the end of this month. I have heard horror stories that doctors not finding the villi damaged will make them not diagnose you with Celiac Disease, when in fact you still have it. I have had a upper endoscopy before and it was the worst experience. (This was years ago when I first started having severe stomach issues. But also before I got severely ill like I am now. He did not take biopsies and did not find anything. Of course, again he blamed all my pain and symptoms on anxiety) Now that I have been diagnosed with Celiac disease my whole life and symptoms make sense now. Anyway I wanted to meet with the doctor first, to see what he believes when it comes to properly diagnosing celiac disease. What are some questions that I should be asking this doctor and how can I make the next endoscopy a better experience? Any advice would be greatly appreciated. Thanks, Shelby
  23. 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!
  24. I am new to the boards, hello everyone. For the past 8 or 9 years I have had symptoms that were getting progressively worse. I assumed it was IBS and stress and never even told my doctor about it. I didn't just wake up one day feeling horrible, it snuck up on me. Finally, my daughter-in-law was diagnosed with celiac disease as part of a study (she is also type one diabetic) and that started conversations and research. I initially dismissed the idea that I could have celiac disease because no one else in my family has ever been diagnosed with it but I finally decided to ask my doctor for the blood test just so I could stop thinking about it. I was sure it would be negative. It wasn't. My blood test results came back with the TTG IgA at 45.5 (the normal range for this lab was listed as less than 12) and my Deamidated gliadin peptide ab IgG was 11.2 (normal range also listed as less than 12). My daughter is travelling abroad for a year and she has also had GI issues so she got a blood test. Her TTG IgA was 68 (reference range is normal under 15) and her IgG was 11 (normal under 7, they used a different test). I had a scope a week ago, the doctor said that my small intestine looks normal but he did mention that the damage is not always visible to the naked eye. I am impatiently awaiting my test results. My symptoms are diarrhea almost every day, sometimes I won't go for days but when I do it is diarrhea again. Pardon the TMI but it ranges from flat out water to paste, it is almost never solid. My vitamin D is deficient but my iron is ok, I am tired, I have eczema, I have chronic idiopathic hives for the past 6 years or so (that has been fun), I feel weak and heavy for lack of a better way to describe it - I can do the things that I need to do but I don't feel like I can and it takes all my motivation to actually get up and do them. I have pain in my upper abdomen about an hour after I eat anything containing gluten (it does not occur when I do not eat gluten) and it is my husband that noticed that one, he says about an hour after we eat I start complaining that I don't feel well. The bloating is amazing, the gas is room clearing, I have headaches or migraines regularly (2 or more times per week), I can't concentrate, my memory is horrible, I am irritable and my joints hurt. I also have restless leg syndrome So my question is, is it likely that I have celiac disease when the IgG is not outside of the normal range? Has anyone else had this? I expect that with both myself and my daughter testing positive for TTG IgA the likelihood of not being celiac is slim but I think at this point I am afraid that the scope will come back negative and then I am stuck with a "then what is wrong with me" situation. I never expected the blood test to come back positive but I have made peace with this. I did go gluten free starting yesterday and there was no pain after eating. The waiting is killing me. I am not a patient person :S I just want to feel normal again.
  25. Hi Everyone! I had a endoscopy and a colonoscopy performed today. I don't see my doctor for 4 weeks, once she receives the pathology report and such. I do have a copy of the procedure note and was wondering if anyone had any input for me that maybe had similar results. I only had one blood test for Celiac the IgA (I think) and it was normal. I do have many other symptoms though. Endoscopy: Z-line was irregular. Minimal inflammation was found in the gastric antrum. The duodenum was normal. Colonoscopy: The colon appeared normal. The terminal ileum appeared normal. Has anyone had results similar to these? Anything seem concerning with this... Thanks!
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