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Found 89 results

  1. Celiac.com 01/29/2019 - Serology-based criteria for adult celiac disease have excellent pre-test accuracy, but can they be helpful in spotting celiac disease without biopsy? New criteria for diagnosing celiac disease in children allow doctors to forgo duodenal biopsies in children who have symptoms, positive blood tests, and celiac disease-associated genes. However, there’s currently no good data on whether such an approach might work for adults with certain clinical presentations of celiac disease. A team of researchers recently set out to evaluate the accuracy of serology-based criteria in adults with variable pre-test probabilities for celiac disease. The Finnish research team included V Fuchs, K Kurppa, H Huhtala, K Laurila, M Mäki, P Collin, T Salmi, L Luostarinen, P Saavalainen, and K Kaukinen. The team compiled three study groups, including 421 adults with high-risk clinical celiac disease suspicion, 2,357 moderate-risk family members of celiac patients, and 2,722 low-risk individuals from the general population. They collected blood tests and other physical patient data. Their "triple criteria" for celiac disease included transglutaminase 2 antibodies more than ten times the upper limit of normal, positive endomysium antibodies, and appropriate genetics, but required no symptoms. The diagnosis was made by grading the intestinal biopsies. Can a Biopsy be Avoided when Diagnosing Celiac Disease? In all, 274 patients were diagnosed with celiac disease. Of these, 59 high-risk subjects, 17 moderate-risk subjects, and 14 low-risk subjects fulfilled the "triple criteria.” All had histologically proven celiac disease, giving the criteria a positive predictive value of 100%. Altogether, 90 of the 274 newly diagnosed patients could have avoided biopsy. That’s one in three patients who could have avoided biopsy. In all, 37% of high-risk, 20% of moderate-risk, and 48% of low-risk patients could have avoided biopsy. Biopsies of "triple positive" subjects showed no histological findings other than celiac disease. The results of this study are exciting, because they show that the “triple criteria” can be used by doctors to reliably spot celiac disease in adults without using biopsy. Implementing these diagnostic criteria would make diagnosing celiac disease easier in many cases, and will reduce the number of endoscopies by one-third. That’s a winning result all the way around. Read more at: Aliment Pharmacol Ther. 2018 Dec 27. doi: 10.1111/apt.15109.
  2. William Dickey, PhD, MD

    So Why Do Celiacs Still Need Biopsy?

    Celiac.com 01/11/2006 - For many years, biopsy of the small bowel demonstrating villous atrophy has been fundamental to the diagnosis of celiac disease. Older celiacs will remember, fondly or otherwise, the Crosby suction biopsy device which was swallowed attached to a long tube and made its way down to the small bowel where, position confirmed by x-rays, it guillotined a small portion of tissue. The procedure was tedious and technical failures common—only identified when the device was hauled up after several hours. Later it became clear that biopsies from the duodenum obtained during endoscopy were just as good, and the biopsy process became a five minute job with no need for X-rays. Nevertheless, many celiacs are reluctant to undergo biopsy and its necessity is increasingly questioned, particularly now that blood tests for celiac-related antibodies are highly sensitive and specific. There are a number of reasons why, in my own practice, biopsies continue to be helpful in celiacs diagnosed in adulthood. Biopsies are necessary when blood tests are negative. While endomysial (EmA) and tissue transglutaminase (TTGA) antibodies are detectable in most cases where villous atrophy is present, 5-10% of patients lack these antibodies1. In this situation, where the story is suggestive of celiac, perhaps with a family history or strongly suggestive symptoms, biopsy is the only way to make the diagnosis. Increasingly, physicians recognize that many patients with gluten sensitivity do not have villous atrophy (Grade III of the Marsh classification) of "classic" celiac disease, but have milder abnormalities such as crypt hyperplasia (Marsh II) or an excess of the inflammatory cells called lymphocytes (Marsh I). Patients in these categories are less likely to have positive serology2. Biopsies are necessary where false positive blood tests may occur. TTGA, particularly where levels are low, may be associated with diseases other than celiac: ulcerative colitis, Crohns disease, arthritis and liver diseases without any evidence of celiac disease have been linked3. Newer TTGA tests have steadily improved in this regard but I still would be reluctant to diagnose celiac on a TTGA test alone. "False positive" EmA is a different issue which I will return to. Biopsies give a baseline for comparison. Suppose a patient starts a gluten-free diet without biopsy—we dont know whether she or he had Marsh I, II or III or even normal histology. A year later, same patient develops new symptoms of diarrhea, weight loss, whatever. Well get a duodenal biopsy as part of the workup, but its going to be difficult to interpret without knowing what things were like before going gluten-free. Specifically, a baseline to look back at tells us whether the small bowel is better, worse or no different, and helps us decide whether we need to focus on celiac disease as the most likely cause of new problems or explore other possibilities involving the rest of the gut. The biggest diagnostic disaster of all, of course, is the gluten-free diet started without any sort of baseline investigation including antibodies, raising the specter of the infamous gluten challenge if a definitive diagnosis is needed. Biopsies provide a "gold standard" assessment of the state of the bowel. There has been much excitement recently about capsule endoscopy, a wireless device the size of a large pill (not to be confused with the Crosby capsule!) which makes its own way down the small bowel taking pictures as it goes. Characteristic abnormalities can be seen in celiac disease, raising the possibility that this device might be useful in diagnosis. If experience with conventional endoscopes is any guide, however, these abnormalities are missing in a sizeable minority of celiacs particularly with mild disease4 (Capsule endoscopy in its present state of development can not take biopsies). Certainly the capsule allows assessment of the bowel beyond the reach of conventional "anaconda-style" endoscopes, but I am not convinced at present that it can replace biopsy. A follow-up biopsy gives an indicator of progress. I offer my patients a repeat biopsy after two years gluten-free and perhaps surprisingly most take up the offer and are keen to hear how things have improved. Ive increased the biopsy interval from one to two years because only 40% of people had complete recovery after 12 months gluten-free5. EmA and TTGA disappearance is only a marker of how successful gluten exclusion has been and is not a reliable indicator of bowel recovery. Does persisting villous atrophy matter if the patient is doing well on a gluten-free diet? Intuitively, one might like to keep a closer eye on the patient with persistently flat biopsies, who could be at greater risk of complications in the future6. The endoscopy not only allows examination and biopsy of the duodenum but also a look at the esophagus and stomach. Sad fact of the ageing process is that you start to collect diseases like trading cards, and just because youre celiac doesnt mean you cant have something else. Its important to have a good look for bleeding lesions in the upper gut even if the blood work for a seventy year old with anemia says celiac (and check out the colon too, but thats a topic for another day). On the other hand, we recognize that biopsies are not always the final arbiter in diagnosis. While the jury is still out on what a TTGA positive, biopsy negative result means with regard to gluten sensitivity, there is plenty of evidence that a positive EmA generally does mean that biopsy abnormalities will follow: My own follow-up of EmA positive, biopsy negative patients indicates that they will develop abnormal histology if not treated7. So it makes sense to start EmA positive people on gluten-free without waiting for significant bowel damage—and as already stated, even a normal baseline biopsy will provide a reference for any problems that might arise in the future. Sometimes I meet a patient with bad gut symptoms but completely normal blood work up and biopsies and when all else fails I will run a trial of gluten-free. It often works, particularly if there is a family history of celiac. But then again, if it doesnt, we have a baseline normal biopsy to say there is no need to persevere. I guess in the future diagnosis of gluten sensitivity will rely on totting up various factors, none individually essential: blood tests, biopsies, family history, genetic testing for the HLA celiac genes. Some researchers are making a case for dropping the biopsy requirement if the antibody blood work checks out in children8, for whom (and for the parents) endoscopy and biopsy is a major issue. In adults however it is quick, straightforward and safe and will remain a key part of my celiac workup. William Dickey is a gastroenterologist at Altnagelvin Hospital, Londonderry, Northern Ireland, with over 400 celiac patients attending his clinics. His interest in celiac disease goes back some fourteen years and he has published extensively on the subject. He is an associate member of Coeliac UKs Medical Advisory Council. References: Dickey W, McMillan SA, Hughes DF. Sensitivity of serum tissue transglutaminase antibodies for endomysial antibody positive and negative coeliac disease. Scand J Gastroenterol 2001; 36: 511-4. Wahab PJ, Crusius JBA, Meijer JWR, Mulder CJJ. Gluten challenge in borderline gluten-sensitive enteropathy. Am J Gastroenterol 2001; 96: 1464-69. Di Tola M, Sabbatella L, Anania MC, Viscido A, Caprilli R, Pica R, Paoluzi P, Picarelli A. Anti-tissue transglutaminase antibodies in inflammatory bowel disease: new evidence. Clin Chem Lab Med. 2004;42(10):1092-7. Oxentenko AS, Grisolano SW, Murray JA, Burgart LJ, Dierkhising RA, Alexander JA. The insensitivity of endoscopic markers in celiac disease. Am J Gastroenterol. 2002 Apr;97(4):933-8. Dickey W, Hughes DF, McMillan SA. Disappearance of endomysial antibodies in treated celiac disease does not indicate histological recovery. Am J Gastroenterol 2000; 95: 712-4. Meijer JWR, Wahab PJ, Mulder CJJ. Histologic follow-up of people with celiac disease on a gluten-free diet: slow and incomplete recovery. Am J Clin Pathol 118(3):459-63, 2002 Sep. Dickey W, Hughes DF, McMillan SA. Patients with serum IgA endomysial antibodies and intact duodenal villi: clinical characteristics and management options. Scand J Gastroenterol 2005: in press Barker CC, Mitton C, Jevon G, Mock T.Can tissue transglutaminase antibody titers replace small-bowel biopsy to diagnose celiac disease in select pediatric populations? Pediatrics. 2005 May;115(5):1341-6
  3. I had a rant here about 3 months ago after I received the results of my own biopsy, and was advised to go gluten free anyway, which I still haven't done but I'm experimenting with foods and hope to be gluten free soon. I wanted to come here and ask your advice again, because my dad had a biopsy about 4 weeks ago, the results of which came today, and I am so surprised to read they're negative. They told him it was very likely that he had celiac because his blood test was transglutaminase positive. He has low iron, low vitamin D, reflux, and his long-term symptoms of M.E/Chronic Fatigue Syndrome which I know are also common symptoms of celiac. Everyone was sure he might have it, so I don't understand why his biopsy was "normal with no evidence" of the disease. The letter does however suggest further blood tests to see if he might develop celiac disease in the future. If his immune system is attacking and it's showing in his blood, doesn't that mean he's already developed it? Why would it do that if he didn't have celiac going on now? I've been encouraging him to try gluten free bread and biscuits but he's been reluctant, now he definitely won't. Should he? Or should he wave the whole thing off and continue eating his sandwiches like he did quite happily today? I guess they will tell him at the appointment. It's just so ridiculous because after he eats wheat he gets reflux! I was also counting on his results being positive... Sorry I'm rehashing my story now, but since 2011 I've had severe, chronic reflux that has gotten worse with time and has remained a mystery after a barium, manometry and two endoscopies; IBS; light headedness/heavy/cotton wool head with brain fog; headaches and jaw pain; muscle pain and severe weakness; sensitivity to noise, light, and heat, also the sun; fatigue and crashing after activity; bone pain; also severe acne that only responds to antibiotics; dry and flaky skin; brittle, cracked and peeling nails; year-round allergies, like having a mild cold permanently; and the occasional mouth ulcer and bleeding gums. The absolute worst is the reflux, followed by the IBS and then my head. I haven't been able to spin in a circle for years. I can't dance. Can't exercise. I feel so dizzy and sick all the time. Can't bend over or lie down with the reflux. Have cut out all acidic foods and FODMAPS. I am underweight. The reflux doesn't allow me to drink much water now because it feels like I have a little ocean of acid/bile sitting in my esophagus and drinking just adds more to it. So my throat has been so dry for months now. Barium and endoscopy both showed acid/bile sitting there, and a hernia. Manometry presumably showed no reason for reflux like a problem with the wave or a loose LES. But my blood work was negative and then my biopsy was negative. I cried on my friend's shoulder when I got that letter, and I've been counting on dad's results since. Now... Now what? I haven't heard from the hospital in 3 months, since my results came back. I don't know if they're waiting to figure out my father before figuring out me, or if they've discarded me. They told me I'm difficult. So I'm looking for gluten free foods but it's difficult without medical support, and being the only one in the house that wants to be gluten free, cross contamination is going to be a constant threat. Just persuading them to have a second toaster is a battle in itself. (Gluten free pancakes are all very well, but not if I put them in that toaster!) Honestly, I'm at my wits' end. I haven't been healthy since 2011. I'm only 28. I don't remember what it feels like to not have reflux, acid, bile; to eat anything with no pain or gas or toilet trips; to spin in a circle or go to amusement parks; what it feels like to have a clear head. I avoid sunny days. This was all triggered and set off at the end of 2011 by panic attacks and a hospital stay. Oh, I forgot to mention that my stools are often pale, like beech furniture (that might be a strange comparison!). I've really just... had it. So I'm not really sure what I'm asking... should we both go gluten free despite negative biopsies? Or might we just have M.E/Chronic Fatigue Syndrome, which my dad was diagnosed with 18 years ago? Thank you for reading!!
  4. 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.
  5. Celiac.com 07/02/2018 - We know from earlier studies that diagnosed celiac disease is more common in women than in men, but there isn’t much good data on sex-based differences in undiagnosed celiac disease. To address this discrepancy, Claire L. Jansson-Knodell, MD, and her colleagues at the Mayo Clinic, in Rochester, Minnesota, conducted a meta-analysis of studies that performed both a screening and confirmatory test that included either a second serological study or a small intestine biopsy, and that that provided clear and complete data regarding sex. According to data they presented at Digestive Disease Week 2018 in Washington, D.C., women are significantly more likely than men to have undiagnosed celiac disease, and the numbers are even higher for younger girls. In all, the researchers found 88 studies that met their inclusion criteria. These studies included data on nearly 300,000 patients. When they got done crunching the numbers, the research team demonstrated for the first time that women also had a higher rate of undetected celiac disease than men. When the team analyzed data from one subgroup focused on children, they found that rates of undiagnosed celiac disease were even higher in girls compared with boys. Timely diagnosis of celiac disease is important for preventing unnecessary suffering, and potential damage and disease associated with untreated celiac disease. In one recent case, a doctors found that a woman's psychotic delusions were caused by undiagnosed celiac disease and an adverse reaction to continued gluten exposure. Her condition improved quickly once she began a gluten-free diet. The research team says that their findings could change approaches to clinical screening, diagnosis and management of celiac disease. They also suggest that physicians might do well to increase their suspicion levels for celiac disease when evaluation women and girls. Source: Helio.com
  6. 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 :(.
  7. 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
  8. 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
  9. 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.
  10. 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!
  11. 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!!
  12. AnneR

    7 year old and biopsy

    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.
  13. 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
  14. 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
  15. 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?
  16. 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.
  17. 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.
  18. 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.?
  19. 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.
  20. 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
  21. 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?
  22. 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
  23. 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.
  24. 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?
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