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  1. Hi, I'm new and looking for other's experience and advice. I recently went to the dr., due to having extreme fatigue for several months. Much to my surprise, my blood count/ hemoglobin was extremely low, so much that I needed 2 blood transfusions . I was shocked! Have always been slightly anemic, but nothing like that. Found out later, my iron and vitamin D were also low. Got a referral to see a GI dr. and went there this week. He wants me to have an endoscopy, colonoscopy and Celiac blood test, which is what brought me here! I had that done and am awaiting results.The endo is scheduled for next week. so I was extremely surprised about the celiac testing, it's something that really wouldn't have crossed my mind. Aside from the anemia, fatigue and vit. deficiency, I haven't noticed many other symptoms. I have had some heartburn lately and started taking acid reducers, also insomnia and headaches. But no GI symptoms really, unless I drink a few beers, then I feel extremely bloated with a stomach ache. Anyone else have this type of experience prior to diagnosis?
  2. My 6 year old daughter was recently diagnosed with Celiac, (positive blood work and biopsy confirmed). I suspected Celiac for her because my brother has it. The whole family was then tested and my blood work came back positive (ttg ,72- even though by that time I was already eating a mostly gluten free diet). My question is- do I really need a biopsy to confirm diagnosis at this point? I'm having a difficult time getting in to a GP for a referral to a gastro- I'm anxious to start my gluten free diet. Though I didn't have many symptoms, I am hopeful and looking forward to improved stomach issues with the gluten-free diet. It's hard to continue eating gluten while I wait. Any thoughts on whether the biopsy seems necessary for me would be greatly appreciated
  3. Hello everyone!! Still on my journey to figure out what's going on with me! I've had a positive gliadin IgG test, negative gliadin IgG, Negative tissue transglutaminase IgG/IgA... Negative biopsy, it showed inflammation and lymphocytes infiltrating the epithilium but no issues with the villi... After I went gluten free for a month and felt great... Reintroduced and all my aches pains and respiratory issues came back I didn't think I had any GI issues but when I reintroduced I realized it made me constipated.... Now I had the genetic testing done and my HLA-DQB1*02 and HLA-DQB1*03:02 were negative but HLA-DQA1*05 is positive. Report says this is rarely observed in individuals with celiac and that it is only mildly supportive of a clinical diagnosis of celiac disease..... I know I should just go gluten free cause it makes me feel better... But I would have really loved a yes you have this or a no you don't
  4. New Here

    Hi everyone! My name is Becky and we are from Alabama. I just discovered this site, and I believe its a God send. I spend countless amounts of time just browsing about this new adventure in going gluten-free. I have a 10 year daughter that tested positive 2 months ago with high numbers according to the doctor. Her numbers were TTG IgA >100, Gliadin IGA 148.8, Gliadin IGG 112, IGA antibody- positive titer 1:160. She had a biopsy this past Monday and Dr. saw significant damage and we are still waiting biopsy results but pretty much know what it will say. I can't help but feel overwhelmed, sad, and confused. I figured this was a normal reaction. I hope to find friends here, as I've never been a part of a forum before but I feel so lost and alone in what to do. I just wanted to introduce myself, and say how excited I am to be here.
  5. My daughter was recently very sick and then diagnosed with celiac disease by blood tests and endoscopy. The doctor did blood work on my husband and I. My bloodwork was elevated so I proceeded with the biopsy. I am now confused by the results... I do not have any severe GI symptoms. I have always had acid reflux and as a child my stomach always hurt off and on due to the acid. I have fatigue, headaches, and depression...but I guess I attribute those symptoms to being a tired mom. Over the past 6 years I have had a blistering rash that was undiagnosed by 2 dermatologist. Currently, I don't actively have the rash so could not biopsy it. I think I don't have celiacs according to the results. Here they are: tTG AB, IgA = 30. (Normal <4) tTG AB IgG = 2 normal (normal <6) HLA positive for DQ2 Immunoglobulin A (IgA) in range at 177 (normal 81-463) Biopsy: Biopsy showed mild suspicion for wheat allergies Small hiatal hernia & esophagitis from acid reflux. The biopsy results showing wheat allergy really confuses me. What do they see on a biopsy to think I have a wheat allergy?? I guess that means I shouldn't eat wheat but won't kill me to eat it as it does a person with celiac disease. Thanks for any input!
  6. Let me start off by saying thank you to anyone who reads this whole thing...cause it's going to be long. And if no one reads it, maybe it will help me to type it. Because right now I'm angry,sad, frustrated and confused!!! In January, after months of all day diarrhea, headaches, brain fog, pain, I went to see my GP and he had the results of my bloodwork. He said you've tested positive for H. Pylori and Celiac disease. I hugged him. There was an answer to it! I was so weak and tired (the D was 10-20 times a day) I didn't ask questions. He said stop eating gluten and I did. The week before I'd found out that there were polyps all over my gallbladder and that it would need to come out and the week before that there were polyps on my uterus that needed to be removed. I really didn't know anything about celiac. I spent 2 weeks detoxing and then had surgery to have my gallbladder removed and my uterine polyps removed. I recovered from that and then really got into this board and started reading. I kept seeing things about needing a biopsy...but I didn't have one. At this point I was more than a month gluten free and was finally feeling better. I could see improvements in my life and it was such a relief. I knew I didn't want to ever eat gluten again. Yesterday I had an appointment with my doctor again and had some questions for him. Why no biopsy? A lot of people think you need one to have a diagnosis. His response...you don't need a biopsy. I asked about re-running my antibodies to see if my 5 months gluten free was paying off. He said you don't need to do that. It won't show anything. What??? I asked about testing my children. He said you don't normally need to do that until they are at least teenagers. What? I've got one teenager so...He tells me he's going to check the guidelines on testing. He leaves the room. During this time I am freaking out! WTH!!! Am I allowed to type that? So...he's gone for a while. He comes back in and says...well, I'm not sure. I need to talk to a GI. Maybe you should have had a biopsy. I left...devastated. 6 PM...my phone rings. It's my Dr. He talked to a GI. He's very sorry. He learned something today. He should have had my do a biopsy. And he learned that there is a link between celiac and thyroid (I've been hypothyroid for 14 years) and some cancers...just like I told him and he dismissed me with a "I've never heard of that." Now that I've been gluten free for 5 months. I could eat some gluten for a while and then do the biopsy. I told him if I get even a tiny bit I will be sick for a week. Ok, so that's not a good idea. We can do the gene testing. But he will need to check to see how much it is before he sends me for that. Sometimes it's stupid expensive according to him. I'm not eating gluten to do a biopsy. I'm so confused. Do I have this thing or not? Does it matter to have the biopsy or not? I'm looking for another Doctor. I'd like one who focuses on the whole human being...not just a symptom. Any thoughts on how to find one of those that takes insurance? Thanks for letting me vent!
  7. ahhh as soon as I think I'm a step closer to knowing what is wrong I get thrown another curve ball! So here is a little bit of info about me.. 27 year old female with Hashimoto's thyroiditis. I've suddenly developed iron deficiency anemia. After doing some research and seeing my doctor I learned that a lot of people with Hashimoto's can also have celiac disease so we ordered some celiac blood tests TTG (IgG/IgA) both came back normal (however total IgA wasn't tested..) DGP IgA negative, and DGP IgG positive (3.59 IV anything above .90 IV considered positive). After getting my blood test results back I made an appointment with my GI doctor and had the endoscopy done yesterday.. I also work in the hospital laboratory so I know the pathologists and all so I called today and he said he didn't see any signs of celiac but wants to pass it around to the other pathologists to make sure, he did say I have gastritis tho with no signs of H. pylori...told me to come talk to him tomorrow but now I'm stressed out and confused!! :/ any advice?
  8. I am not convince I have active Celiac Disease. I'll summarize as briefly as possible. Past 5 years I've been gluten-free because I thought I had Celiac (long story). Decided to start over and get thoroughly tested by a new doctor. Here are the deets: Symptoms: cramping, burning in stomach, gas, distention, random abdominal pains (no diarrhea, no dematitis) Never had a nutritional deficiency or anemia, whether eating gluten or not No improvement of symptoms on gluten-free diet No relatives diagnosed with Celiac Celiac bloodwork while Gluten-free: all negative, despite ongoing symptoms 5-week gluten challenge: biopsies show Marsh 1 elevated epithelial lymphocytes in small intestine and colon No villous atrophy or structural change. Repeated celiac bloodwork after 2-month gluten challenge: all very negative again, no change whatsoever Diagnosis ==> Celiac Disease Is there anything else that could have caused the lymphocytes in my colon and small intestines? The only things that seem to give me relief are a combination of ginger root, probiotics, vigorous cardio exercise, tons of sleep, and avoiding acidic foods, caffeine and FODMAPs. (That's kind of a lot to keep track of.) Most gluten free baked goods actually make me feel really sick!! I feel much better just eating a regular Dunkin Donut, honestly! Gluten-free is not helping me and it's making my life so complicated. I'm afraid of developing an eating disorder because I have come to view all food as being poisonous because I don't understand what will or won't me sick. Thanks for any help.
  9. Had positive DGP IGG... 3.59IV positive is GT .90 Biopsy says A. Duodenal mucosal biopsies with no significant microscopic abnormality. No diagnostic histology all features of celiac are appreciated. B. Gastric antral and oxytocin mucosal biopsies showing chronic gastritis. Reactive foveolar hyperplasia is present. H. Pylori is negative The material present is partly tangentially sectioned. The villous crypt ratio is about 3.5. There are intraepithelial lymphocytes but they don't seem to be significantly increased in most of the villi. There are inflammatory cells in the lamina propria including plasma cells and lymphocytes with an occasional germinal center. They are normal to slightly increased in number. No histologically diagnostic features of celiac are appreciated Opinions anyone??? I'm confused see. Lymphocytic gastritis can be associated with celiac plus my positive blood test!! Ahh maybe I'll just give up the gluten and see how I feel
  10. My wife has been feeling terrible all of 2014: bloating, loose bowels, floating, light coloured stools, general aching, abdominal cramping (especially LLQ), fatigue, loss of libido, feelings of depression and anxiety. Many symptoms started mid 2013, but they have gotten worse this year. She had a blood test for celiac, and here are the results: tTg-Iga Ab 5 tTg-IgG Ab 3 DGP-IgA Ab 162 DGP-IgG Ab 3 Result Range indication for tTG and DPG Negative < 20 Weak Positive 20-30 Moderate to Strong Positive >30 Test results: Positive Feelings towards test results: :,( My first question is: Could anything other than Celiac produce these results? How positive is the test (90%, 99%, 99.9%)? She will have a GI appointment where they will do a biopsy in a month or so (date not confirmed yet). So far this week, she has been off gluten and it seems already she has noticed improvement. The GI's office wants her to keep eating gluten until the appointment (the receptionist said that it might be an allergy and not Celiac). What are your thoughts? Can she just start eating gluten again a week before the appointment if need be, or does she have to feel terrible for another month? I'm sure she'll create her own account here soon, but I had a bit of time, so I thought I'd ask on her behalf. Thanks community.
  11. Celiac.com 02/18/2013 - Currently, there are two main diagnostic tools available to would-be celiacs: biopsy and serological (antibody) tests. For the past few decades, biopsy has been the only relatively reliable (and diagnostically accepted) path to diagnosis. The problem is, biopsies are expensive and highly invasive – antibody tests would be a cheap and painless alternative, but they haven't proven themselves to be accurate enough for conclusive diagnosis. However, a recent analysis shows that antibody tests have improved a great deal in recent years and when used to test for multiple antibodies concurrently, they can be almost as effective as biopsies for diagnosing celiac disease. The study's facilitators began their restrospective analysis by collecting serum samples from 268 patients at hospitals throughout Switzerland, Germany and Austria. All included patients suffered from celiac-like symptoms and underwent both biopsy and antibody testing within 2 months of serum collection. All included patients were on gluten-containing diets at the time of testing. 149 of the patients were ultimately diagnosed with celiac disease; the other 119 showed normal intestinal mucosa and were considered celiac-free. These patients were the control group. Usually, potential celiac patients are tested for IgA anti- tTG or EMA. If the test is positive, then diagnosis is then confirmed with biopsy. However, there is still a chance that the test will throw a false positive, meaning many people are put through unnecessary biopsies. The goal of the present study was to develop a method for reducing the number of these unnecessary biopsies. It was found that when two antibody tests are used, the reliability of the tests increased substantially, weeding out a great many false positives, as well as picking up some false negatives. When three tests were used, the numbers became even more accurate – when used concurrently and all three show a positive result, the IgA anti-dpgli, igG anti-dpgli and IgA anti-tTG achieved an 87% positive likelihood and .01% negative likelihood (compared to a positive likelihood of only 7% and negative likelihood of 0.04% with just the IgA anti-tTG). Using these three tests together, only one test subject came through as a false positive, and only two came through as false negatives (compared to 16 false positives and 5 false negatives with the IgA anti-tTG only). 60 came through with discordant results (meaning at least one of the tests came back negative – in these cases, biopsy is necessary). When considering that biopsy really only has a real-world diagnostic accuracy rate of about 90%, the three test combination utilized in this study achieves strong enough numbers that biopsies are starting to look unnecessary. Biopsy still might be the surest way of detecting celiac disease, but this study shows that it is not necessary in all cases, and patients seeking celiac diagnosis have a few more tests they can ask their doctors for. Source: http://www.biomedcentral.com/1471-230X/13/19
  12. I want to share my story because I think it may be of some help to others on this forum. For years I dealt with painful bloating, upper stomach pain, loose stool and constipation. In May of 2012 things became much worse. Existing symptoms worsened and new symptoms such as fatigue, skin issues and brain fog started occurring. I'm not usually one to go to the doctor unless I am on my death bed, but all of these rapid changes were concerning and I decided to make an appointment. After explaining everything to my doctor, she ordered some blood tests, one of which was Tissue Transglutaminase IgA. My insurance carrier is Kaiser, and the accepted normal range for this test is < 0.90. My result came in at 0.94, and after some discussion with my doctor, I was told that I had a borderline result and that I should limit my gluten intake. At this point I started research on the Tissue transglutaminase IgA test as well as Celiac. Prior to this test, I didn't know much about Celiac, and it never really occurred to me that I could have it. I found a great number of sources stating the accuracy of the Tissue Transglutaminase IgA test ranging in the high 90% range with false positives almost never occurring. Additionally, I found that in order for the test to be accurate, the person being tested needs to be eating gluten regularly for some time leading up to the test. I wanted to be sure, so I asked my doctor for a second test, and before having my blood drawn, I put myself on a very gluten rich diet. I went in for my second Tissue Transglutaminase IgA test in June, about one month later, and the result came back at 1.33, much higher than the previous 0.94 test and the 0.90 normal result. At this point my deductive reasoning took over and I accepted the reality of the situation...it appeared that I had Celiac. I went into denial mode, and I began frantically researching, trying to find other causes for elevated levels. Initially, after reading lots of user forums, was convinced that gluten intolerance and Celiac were simply the same condition at different severities, but found that to be a false claim as gluten intolerance won't cause your body to produce antibodies when you consume gluten. I also found out that Wheat allergies won't cause the antibodies either. I spoke with a GI doctor, and they suggested we do an upper endoscopy to confirm the diagnosis. At this point, after all of the research I had done, and after the increase in levels from the first test to the second, I decided to forego the endoscopy and simply move forward adopting a gluten free diet, mainly because the treatment plan wouldn't change with a diagnosis and also because I didn't want a pre-existing condition for insurance reasons. I spent the next year and a half somewhat depressed, even though I didn't know it at the time. I had gluten a few times, and when I did, felt terrible a few days after with symptoms lasting a week or so. I did more research and began to notice new symptoms including peripheral neuropathy, joint pain and memory issues. Fast forward to 8 weeks ago, the end of 2013...I'm not sure what changed my mind, but I began to have doubts again, telling myself, I don't think I have it. I started doing research again, and at this point found some new information that I had not uncovered initially. I read at the University of Chicago Celiac Disease Center, that in some cases, people will have elevated levels on the Tissue Transglutaminase IgA test even though they do not have Celiac. The explanation is that at some point in the person's life, after a stomach-flu or other event, the small intestine becomes slightly permeable, gluten is ingested, and the body starts producing antibodies against gluten. From that point forward, the body will always produce antibodies when gluten is consumed. I found this new information promising and decided to get the endoscopy, as living my life not knowing one way or the other was driving me crazy. At this point, I had reversed my thinking 180 degrees from being certain that I had Celiac to being certain that I did not. I started to feel excited about not having it. The doctor put me on a six week gluten challenge and scheduled the endoscopy. Over the next 8 weeks, I ate gluten at almost ever meal. I ate a ton of it, as much as I could, because I wanted to make sure there would be enough damage to detect. Over these 8 weeks, I didn't have any negative effects from the gluten. No bloating, no joint pain, no peripheral neuropathy, and my brain fog was improving too. Additionally, someone had ordered me the 23andme.com DNA test for Christmas, and I was eager to get the results because they give you your raw DNA data and you can check if you carry the celiac genes. My DNA test results came back 3 days for the endoscopy and I found out that I do NOT carry the genes that 98% of people with celiac carry, leaving only a 2% chance that I might have it. To cut to the chase here, the endoscopy was performed, and the biopsies were normal, and I do NOT have celiac. This is good news for me, but I learned a very valuable lesson over the last few years, and I think it has value to others who may be in a similar situation. First off, if you get a positive blood test, follow your doctor's advice and get the endoscopy. You may very well be producing antibodies to gluten due to a stomach flu you had in childhood and not have Celiac. Also, taking a closer look inside your esophagus, stomach and intestine may uncover other issues you weren't aware of like GERD or HPylori. By the way, the procedure was a breeze...not a big deal at all. Next, do not underestimate the power of your thoughts and belief and how they can manifest onto your physical body. I spent over a year with tingling fingers and toes, sore joints and brain fog from a self diagnosed condition that I don't actually have. I know there are many people who do indeed have celiac, and I'm truly sorry for that, but for those of you that don't have an official diagnosis, do yourself a favor and get the endoscopy. By the way, after all this time, all of my symptoms were due to having a mild case of GERD, some overeating and a change in eating habits. I've started paying closer attention to how and what I eat, and I feel a lot better.
  13. Hello everyone, I just have a question because I have seen some conflicting information online. So I was wondering, is it possible to have negative antibody tests and a positive biopsy? That is of course prior to going Gluten Free, as it would certainly be possible at that point. I am just confused because I read that Antibody tests can only confirm you do not have Celiac Disease, which indicates that false negatives are not possible? But I read elsewhere and always thought that false negatives were possible? Are false negatives only possible if you've gone gluten free before testing or are false negatives also possible if you are still consuming gluten? My doctor told me if the test came back false that it doesn't mean I don't have it, but according to this article http://www.uchospitals.edu/pdf/uch_007935.pdf a negative blood test confirms that you do not have Celiac. I am so confused. Any information to enlighten me would be a big help. Thanks! ~ Thursday
  14. Celiac.com 12/04/2013 - About 1 of of 100 Americans has celiac disease, but most cases remain undiagnosed, partly because of failure on the part of physicians to collect at least four specimens during duodenal biopsy, as per current recommendations. A team of researchers recently set out to determine whether physician and practice characteristics are associated with these failures. The research team included Benjamina Lebwohl, Robert M. Genta, Robert C. Kapel, Daniel Sheehan, Nina S. Lerner, Nina, Peter H. Green, Alfred I. Neugut, and Andrew Rundle. For their study, the team used a large national pathology database to identify all adult patients who underwent duodenal biopsy during 2006–2009. They used hierarchical modeling to determine whether procedure volume, the number of gastroenterologists per endoscopy suite, and the number of gastroenterologists per capita of the zip code of the practice were associated with adherence to recommendations. The team identified 92,580 patients who met their inclusion/exclusion criteria. Patient group was 67% female, averaging 53.5 years of age. The team received biopsy specimens from 669 gastroenterologists from 200 endoscopy suites, located in 191 zip codes, with a mean of 3.4 gastroenterologists per suite. Multivariate analysis showed that higher procedure volume was associated with decreased adherence to specimen recommendations [odds ratio (OR) for each additional 100 procedures, 0.92; 95% confidence interval (CI), 0.88–0.97; P=0.002]. Gastroenterologists employed in suites with higher numbers of gastroenterologists reported higher levels of adherence (OR for each additional gastroenterologist, 1.08; 95% CI, 1.04–1.13; P<0.001) However, that was not the case for a higher gastroenterologist density in the zip code of the practice (OR for each additional gastroenterologist per capita, 1.01; 95% CI, 0.99–1.03; P=0.21). This study suggests that high-volume physicians exhibit lower rates of adherence to biopsy guidelines, possibly because of the additional time required to submit the minimum of four specimens. In contrast, doctors working in endoscopy suites with high numbers of colleagues showed higher rates of adherence, possibly because of peer education. Basically, doctors who do large numbers of biopsies are more likely to submit too few samples for accurate analysis, whereas doctors working in close contact with large numbers of peers are more likely to follow current recommendations, and to produce better, more accurate results. Source: European Journal of Gastroenterology & Hepatology: November 2013 - Volume 25 - Issue 11 - p 1273-1278. doi: 10.1097/MEG.0b013e3283643542
  15. Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The biopsy is a small piece of tissue, such as from the inside lining of the intestine, that has been removed to look for diseases. The biopsy itself is not painful, because there are no pain-sensitive nerves inside the small intestine. An intestinal biopsy can be done in either of two ways depending on the age of the children and the tradition of the institution. Sometimes a blind biopsy procedure is performed by a biopsy capsule. This is thin flexible tube with a capsule at the tip, which has a hole and a tiny knife inside the capsule. This capsule is introduced into the intestine under fluoroscopy (X-ray) control. Alternatively, with an endoscopy the doctor can see inside the digestive tract without using an x-ray to obtain biopsies. The biopsy specimens are processed and viewed under the microscope to identify or exclude celiac disease. An important basic rule is that the biopsy should be performed safely. For a safe procedure children (and adults) should be sedated. There are two methods of sedation: unconscious (general anesthesia) and conscious sedation. During both kinds of sedation the vital parameters (heart rate, blood pressure, oxygen saturation) of patients are continuously monitored. The method of choice depends on the child. Conscious sedation is performed with two different intravenous medications. One of them is a sedative medication (e.g. Versed), which causes amnesia in 80-90% of children, and even older children do not recall the procedure. The second medication is a pain-killer type medication (e.g. Fentanyl), which further reduces the discomfort associated with the procedure. In addition, the throat is sprayed with a local anesthetic in older children, which makes the throat numb and prevents retching at the introduction of the endoscope. During general anesthesia the anesthesiologist uses sleep-gases (e.g. halothan) and intravenous medications and then places a tube into the trachea. Children are completely unconscious. This is a safer way to perform endoscopy, because the patients are fully relaxed and their airway is protected. However, the anesthesia itself has certain complications.
  16. Hello, I had a biopsy yesterday for Celiac. The doctor said my duodenum appeared normal. I could still have Celiac though, right? I had a negative blood panel last week. However, from mid August to mid September (for 21 days) I was on the ketogenic diet. So no gluten. Then a few weeks ago, blood work via my oncologist indicated I have iron deficiency anemia. Ferritin was 6 and they say that's pretty low. So far there are no other reasons for the anemia (no bone marrow issues, no gastro bleeding, no girl issues). I have been tested for those over the past week. So what do you think? Is 21 days of no gluten then 1 month of gluten good for a positive result if Celiac? Thank you in advance!
  17. Celiac.com 06/15/2011 - A duodenal biopsy during endoscopy is the gold standard for diagnosing celiac disease. Because the histopathological features suggesting celiac disease , specifically villous atrophy, can vary in severity throughout the length of the small intestines, the American Gastroenterological Association Institute recommended in 2006 that at least 4 specimens be taken for examination. Yet the degree of adherence to this recommendation has not been assessed, and neither has its impact on diagnoses. A recent study by Benjamin Lebwohl at the Columbia University Celiac Disease Center concludes that most physicians are not following the guidelines, but they should be; doing so doubles the diagnosis of celiac disease. Dr. Lebwohl and colleagues collated the specimens sent to Caris Life Sciences, a specialized GI pathology laboratory that receives samples from endoscopy centers in forty-three states plus the District of Columbia and Puerto Rico. They looked at 132, 352 patients who had endoscopies for various indications between January 1, 2006 and December 31, 2009. From these endoscopies, only 35% followed the recommendation of submitting at least four specimens. There was a slight increase once the guidelines were proposed, in 2006; but by the end of 2009 adherence to the guidelines was still a low 37%. Interestingly, the number of specimens submitted could be directly correlated with the probability of a positive diagnosis of celiac disease. Adherence varied by indication, with the highest rates (43.9%) among patients undergoing endoscopies for diarrhea and the lowest rates (30.0%) among those having endoscopies because of heartburn. Among patients having endoscopies for malabsorption or suspected celiac disease adherence was only 38.5%. Adherence to the guidelines also decreased with the age of the patient. The researchers did not have access to socioeconomic or racial data regarding the patients, so could not determine if that factored into adhering to the guidelines. The proportion of patients diagnosed with celiac doubled when at least four biopsy specimens were submitted. This increase varied by indication; it was most apparent in those undergoing endoscopy because of malabsorption and suspected celiac disease, but was present for the other indications as well. This study validates those recommendations; hopefully the slight increase in adherence since they have been proposed will continue to grow. Source: Lebwohl B, Kapel RC, Neugut AI, Green PHR, and Genta RM. Adherence to biopsy guidelines increases celiac disease diagnosis. Gastrointest Endosc. 2011 May 19.
  18. I have done some research and was wondering if a biopsy is really necessary for either of my boys. They are 3 and 6 and we do have a family history of Celiac. Here are their blood test results. Alex Deam Iga Index 212.3 Gliadin IgA postive Glia IgG Index 137.9 Gliadin IgG positive TTG IgA index greater than 100 TTG IgA AB positive Robert Deam Iga Index 115.5 Gliadin IgA postive Glia IgG Index 60.1 Gliadin IgG positive TTG IgA index greater than 100 TTG IgA AB positive I found this in a chat room and it got me thinking... "With Celiac, something like 98% of people who test positive for the TTG will indeed have a positive biopsy. In this study http://cat.inist.fr/?aModele=afficheN&cpsidt=16733112 , 48 out of 49 people with TTG > 100 had a positive celiac biopsy. This implies that there is no point doing the biopsy when TTG is > 100. For moderate TTG levels (between 20 and 100), 50% had positive biopsies, and were recommended to "continue to undergo biopsies" until diagnosed" . I would LOVE to hear your opinions.
  19. Apparently both my son's have high tests results...I was wondering if there are any doctors that will give a positive diagnosis off of the blood test alone. Meaning no biopsy? Thanks! Alex age 4 Deam Iga Index 212.3 Gliadin IgA postive Glia IgG Index 137.9 Gliadin IgG positive TTG IgA index greater than 100 TTG IgA AB positive Robert age 6 Deam Iga Index 115.5 Gliadin IgA postive Glia IgG Index 60.1 Gliadin IgG positive TTG IgA index greater than 100 TTG IgA AB positive
  20. Hi, I'm new to this site as well as being gluten free. My main question is, do I really need to have a biopsy or to be diagnosed? I went to a nutritionist about 3 years ago because I was so tired, that I thought maybe something was wrong with my thyroid. AFter a ton of blood work she told me that I had a malabsorption problem and that I wasn't absorbing amino acids, Vitamin D, and iron to name just a few. She said I most likely had Celiac Disease and told me to try eating gluten free and also ordered a blood test (I can't remember which one exactly). The blood test was negative. I went gluten free for a week but didn't really notice a difference. Shortly after I was also diagnosed with PVC's, an irregular heart arrythmia and put on beta blockers which helped with my fatigue. Could my PVC's also be a reaction to gluten? So I ignored the celiac somewhat diagnosis until recently when I made myself realize that my multiple loose bowel movements a day were not normal even though they have been normal to me. I guess I did not classify them as diarrhea but it really is. I have been gluten free for almost 2 months now and have normal bowel movements and feel better. I did however eat 2 slices of pizza to see what would happen. Nothing happened for almost 24 hours then severe diarrhea (15-20 times a day) for at least 2 days but really not normal for almost a week. My main question is, do I really need to have a formal diagnosis with a biopsy? I felt so bad eating 2 slices a pizza that the thought of a gluten challenge prior to a biopsy really terrifies me. Thank you and sorry for the long story Kathy
  21. Sorry I am new here and not sure if this has already been posted... I just got a call from my pediatrician and she said my 3 year old son's blood work came back and all the markers were positive for Celiac. She said the next step is to get a scope and biopsy done to confirm. She also suggested the whole family get tested for it. So my questions are....if all the markers are positive is the scope necessary, doesn't that tell us he has it? Can all the markers be positive and the scope come back negative? Thanks for any info you all may have!
  22. Hi everyone, I was hoping someone could help me figure my biopsy results out. Long story short, my aunt was diagnosed with Celiac a few decades ago and my dad was diagnosed a few months ago, which prompted me to get tested. My blood panel came back positive for Celiac (I tested positive for 2 out of 3 antibodies, can't remember exactly what.) That was in December, but I couldn't afford to get the endoscopy done until April. Here are the results: "The biopsy of duodenum show acid injury but no Celiac sprue. Stomach biopsies show gastritis, esophageal biopsies show acid reflux, tested negative for H, Pylori." Most of the results make sense because I drink pop like it's water and I really need to stop that, but the "no Celiac sprue" thing threw me off. For the past few months I've tried cutting back on gluten, but I cheated quite a few times (on purpose and by accident.) I'd rather ask random people on the internet who actually have these problems before I talk with a doctor, since my doctors haven't been very helpful thus far. I'd appreciate any advice you could give me.
  23. Hi! Newbie here Where to begin...labwork for 7 yo dd came back last Friday & tested positive for celiac. Hooray! She's had gut issues since birth so we were so thankful to have a reason. Unfortunately, we started pulling her off gluten a month ago (because we didn't know any better, and she was missing too much school) while doing a food diary with her to figure out why her previously dx'd IBS was so out of control (and why her "stomach flu" wasn't going away even when all she was eating was saltine crackers & chicken broth!). So when the GI called & said she had celiac, she said we needed to put dd back on gluten & so we could have a positive biopsy. Ugh. Not thrilled, but it's my own damn fault. But she never said how much I had to give dd...I keep reading anywhere from 2-6 slice of bread a day. But I'm assuming that's for an adult. Dd is 50 lbs, and doesn't eat that much. How much gluteny food do I need to give her? Her tTG IGA ab was 42 (normal <7) if that means anything. Dd is smart too, and has already accused me of giving her gluten! Which I'm totally guilty of doing, since there's no way she'll eat it now that she knows it's what made her sick. I even offered to let her eat cinnamon rolls every night & she told me "no way!" TIA for any & all help
  24. I got my blood test back last week as a "positive" for Celiacs and have since cut out all gluten (obviously) besides a couple things with soy sauce before I knew that had wheat. I've been limiting gluten intake since 2010 when I got an IBS diagnosis and made the assumption that I was at least gluten sensitive. But now I'm waiting for the referral from my university health center to go talk to a gastroenterologist about getting the biopsy done to confirm everything. I have a couple questions... Is the biopsy really necessary? I'm just super nervous about it and have a busy schedule due to being in college. What's the prep like? My mom has Chrons so I've grown up watching the yearly colonoscopy prep with years of not so fond memories of her crying through all the nasty stuff she had to drink. What's recovery like? As is probably obvious I'm super nervous as well as a bit frustrated with how long my university is taking to get me the referrals and information I need to get set up. Any answers or help is more than welcome.
  25. A little history...I am 39 years old. I've had belly issues for as long as I can remember. I was diagnosed with irritable bowel syndrome in my early 20's. My symptoms: Nausea (I don't always feel awful, but I never feel good. This is daily. Something I unfortunately considered normal for me. It's all I've known for over 20-25 years). Abdominal cramping Constipation and diarrhea (less C and more D) Stool contains a lot of mucous, floats (fatty stool?) Frequent headaches Fatigue/sleepiness Numb/tingly hands and feet (most intense after eating) Brain fog (feels like "medicine head") I had my gallbladder removed three years ago. I have another autoimmune disorder that caused six miscarriages (I now am the mom to three nine year olds as a result of INVITRO. They administered IVIG and heparin to sustain pregnancy). My numb/tingly hands started just a few months before I had my gallbladder removed. I saw a doctor at that time to discuss the numbness (I had an MRI to rule out MS and stroke, bloodwork and EKG to rule out heart issues). When that came out all normal, he said he didn't know what else could be causing it. He said the fatigue was due to being the mom of three kids. This kind of ticked me off. I get that it's tiring, but there is a difference between being exhausted from life, and SLEEPY all the time. My headaches he attributed to three children as well. Sigh. My constipation and diarrhea due to ibs, and for my nausea, suggested I give up dairy to see if I was possibly lactose intolerant. I gave it up for about two weeks. No change. Perhaps I didn't give it long enough. I was so happy to have MS ruled out, I let it go. I blame myself for not being proactive in getting to the bottom of what was wrong with me. Nausea and these weird numb hands and feet were my new normal. I'm not the person I used to be. I used to be fun, cheerful. I feel like I'm just this lump of grumpy because I never feel good. I guess I could add irritability as a symptom, but I feel of course I'm irritable, I feel like crap! Zoom to now. I've gained 30 pounds the past two years. I can't lose weight. No matter what I eat, how much I exercise, the scale doesn't move. If it does, it moves up. I was playing around online seeing what I could do, and why I wasn't losing. It kept leading me to gluten and celiac. I read the symptoms...nausea, headaches, etc are symptoms to almost all ailments it seems. Then I got to the numbness and miscarriages...and a lightbulb went off. I saw a new doc . She said it could be thyroid, vitamin B deficiency, or celiac. Thyroid and VB came back normal. She did one blood test for celiac (iGa?). It came back negative, but she said it is not uncommon for false negatives, so she recommend I go in for a biopsy to confirm or rule it out. I had my biopsy this morning. I'm frustrated because the GI doc seemed totally aggravated that I was having a biopsy done. He said that since my bloodwork came back negative, I do NOT have celiac. He said the numbness has nothing to do with celiac...unless of course I was malnourished, which I didn't appear to be (yes, I am overweight), and my bloodwork didn't reflect that. He said when it comes back negative (not if, when), we can meet again to look into getting meds to help with my IBS. Good news is that even though he gave me attitude, he did perform the biopsy. I should get results early next week. I told him that if it turns out negative, I still plan to eliminate gluten to see if that helps rid me of my symptoms. He looked at me like I was out of my kind and said dryly, "if you don't have celiac, you don't have problems with gluten." Fine. Whatever. I didn't argue with him. What does it hurt to try? I'm happy I got my biopsy. I'm hoping it gives me answers. If any of this sounds like your experience. If you could give me any advice. I really appreciate it!
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