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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About nineof9

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  1. Ok, so I got more labs done, this time they were TTG IGG and IGA, which were both negative. I guess I don't have celiac but most likely have a very strong gluten sensitivity. However, I am very concerned because I am anemic... and have been chronically anemic with my Hematocrit being low since January. In January, my HCT was 27.9 and just recently it was 39.3, with a reference of 42-54. My new GI is probably going to do a colonoscopy because I have had rectal bleeding for probably 2 years. I thought it was just hemorrhoids but I am now very fatigued, constantly getting headaches, and my GI system is in complete turmoil every time I eat something. There have been times when I pass stool and the toilet is completely red (I always thought it was just a hemorroid) but I constantly have blood when I wipe and thought it was something not too serious (sorry to be so frank). Clearly there is something going on with my HGB/HCT since this is what started the whole problem in the first place. Everything else is normal but my HGB was low for a mid 20s male and my HCT is also clearly low. Has anyone else had this??? I am starting to get concerned it may be something a little more serious and I just don't know what is going on with my body
  2. So recent labs came back. My IGG was HIGHER this time than it was the last time. I had a level of 25 compared to 22 a few months ago and I was eating more gluten this time because of the endoscopy..... what is going on????? IGA and EMA negative but I believe my IGA is low to begin with. I am certainly going to go to a new GI and hopefully will be able to figure this all out. What are your thoughts??? Clearly I am having an immune reaction to gluten.
  3. Just an update. I went for a check up today with my current GI and I am more convinced then ever that he does not really know what he is doing. I luckily got a prescription for another celiac panel, and am worried that since they did not write for the Diaminated Gliadin blood test that they will not run this. I guess when I go to give blood I will just ask that they run that too since every lab runs the tests differently. My GI informed me that he would give me the script for the blood test just to appease my concerns but restated that he thinks that my biopsy report was so unremarkable that the likelihood of me being positive is minimal. I also got more information from him regarding the samples and found out that he only took 2 samples from the 3rd part of the duodenum. The reasoning behind this was that "celiac disease manifests distally in the small bowel." Her further told me how he had a fellow who took 6 samples throughout the duodenum from a patient and that he found that this was very invasive and most likely did not reveal more about whether celiac disease was actually present. Given my current knowledge and understanding of celiac at the moment, I understand that there has been CONVINCING evidence that celiac does not present itself in the typical distal parts of the small bowel and that it has been found more and more to be in the more proximal parts of the small intestine. Clearly my current GI is not very learned with regard to diagnosing and treating celiac and he basically told me that all of the problems that I have been encountering are all due to the stomach ulcers. He stated that I keep fixating on celiac when the "proof and evidence all points to the stomach ulcers." I kind of felt like an idiot and he definitely did not make me feel more convinced in his abilities to treat me making me feel like a paranoid person. He refused to look at the "big picture" and stated that the mucosal flattening and reddening were only initial clinical impressions during the endoscopy and were not "final." Basically, he was saying that those were just his impressions and they don't mean anything.... but honestly someone who has been in practice for 20+ years SHOULD know what they are looking at and I am sure that these are adjectives that are not used for everyone. I will keep everyone posted with my latest celiac panel in hopes that they will reveal more information. Do I request the DGP IGG and IGA or should I assume that they will be done. Thanks in advance for all of your help.
  4. Thank you all for the advice. I guess I am going to request a DGP blood test since I called the lab and was informed that they do indeed run that test but most likely it was not the DGP version. If I am positive for DGP then I have my answer, but I am worried that being off gluten for about 2 months would really mess up the results. I have been back on gluten for 3 months so I hope that I have done enough damage to indicate that there is a problem (my senses feel as though it will be considering the preliminary report from the endoscopy and the flattening and reddening of the 2, 3, and 4th part of my duodenum). I never thought I would have to fight this hard and care to know the answer, but I will not be at ease without it.
  5. Sorry for posting 500 times in a row, but I was wondering if anyone can offer any advice as to why only 1 sample was sent for pathology screening. I read the official report and despite my preliminary report stating that I had mucosal reddening and flattening of the 2, 3, and 4th parts of my duodenum as well as mucosal erosions in the duodenal bulb why only the 3rd part of the duodenum was send. The report states that the pathologist received one tube labeled "third part of the duodenum" and another that stated "antrum of stomach." My major question is why on earth did they take samples from all parts of my duodenum and only send 1???? This is really frustrating me because at the moment I feel as though the GI I went to really messed up and now I need to have another biopsy done. I have done research and know that for some celiacs there may not be major changes in the more distal parts of the duodenum and that the duodenal bulb and 2nd part may be the only areas in which the disease appears. If anyone can share similar stories of their procedures and whether or not this is a common way for GI's to test for celiac I would be very appreciative. IMHO, if samples throughout my duodenum were taken, why not send THEM ALL, especially knowing that celiac appears in patches throughout the small intestine.
  6. I got the official pathology report so that I can take it to another doctor. The report states that there was unremarkable duodenal mucosa in the sample from the 3rd part of the duodenum. I was wondering if it is standard to take this as the sample instead of possibly the 2nd or the duodenal bulb which is why the report was non-conclusive. Thanks again!!
  7. Thank you everyone for your thoughts. I was figuring that I really should go for a second opinion. I work at a hospital and one of the physicians informed me that the reddenning and flattening could be due to the ulcers. Unfortunately, the damage was throughout the duodenum and due to the other tests, I honestly feel as though it is celiac disease. The celiac panel that i had done was "Gliadin and Transglutaminase." I am unsure if having more blood tests would be more conclusive but I have been back on gluten for almost 3 months now and I am starting to get really frustrated with this whole process. Even though I was incredibly frustrated with the gluten free diet, I know that my health is much more important and I would rather have that official diagnosis. I know it sounds weird but being gluten free has become so trendy lately and in no way do I want to come across as someone who is just a picky eater. I would hate to be "THAT" person at a dinner party who has to eat something special because I want to be a trendsetter. Honestly, gluten free living is so hard that there really isn't anything "trendy" about it, and the media makes it no better!!!! I think I am definitely going to make an appointment with another GI and get my records from the old one. Hopefully I will be able to find someone who will be able to run more tests or even make a diagnosis with the tests that I already have had done considering the current signs that are pointing towards a diagnosis. I feel as though looking at the big picture (morphological changes to my duodenum, symptoms, low HgB and HCT, as well as a positive IGG test, strong family history) all point to a diagnosis that would be missed if it were based ONLY off of the pathology report. It still kind of gets to me that knowing how difficult it is to diagnose celiac disease, and the fact that a MAJORITY of people with celiac go undiagnosed, doctors remain very conservative in making an official diagnosis. I understand the risk in making an incorrect diagnosis, but when testing is not 100% at the moment, I feel like going with your "gut" (pun intended) is a good way of making sure that people who fall between the cracks get healthy faster. I will certainly keep you all posted with how things transpire in the coming weeks. Thanks again for all of your input!!!!!
  8. I posted a little while ago regarding my lab values for celiac disease and recently got an endoscopy. Here is a quick run-down: History: - mid twenties male, went for testing due to a low HgB while trying to give blood (14.2, which is not very low, but low for someone my age and level of health... I'm an avid runner). - Celiac Panel--> Gliadin IGG Antibodies: 22 Ref. > 20 so its considered a weak positive (EMA and IGA negative). Total Serum IGA was 80, reference was 70-400 (this still puzzles me). - Other labs normal, Fe, and Folic Acid and B12 normal - Hematocrit was low, 38.7 (reference 39.3-52.5) Key take aways... there is definitely something going on with my HgB and Hematocrit - Went gluten-free for about 2 months based off of the + IGG result and FELT AMAZING. However, missing beer and the convenience of food I wanted more information so I went back on gluten for the EGD. - EGD Prelim Results: Moderate Esophagitis, a few superficial ulcers were found in the pre-pyloric region of the stomach, Erosions of mucosa noted in the antrum of the stomach. Duodenum--> reddening and flattening of the mocosa was noted in the 2nd, 3rd, and 4rth parts of the duodenum, as well as having erosions of the mucosa in the duodenal bulb. - Also worthy to note, I have a strong familial history of celiac. My eldest sister, first cousin, and uncle (all blood relatives) have been diagnosed with celiac disease. My dilemma is currently that when I went for the follow up, I was told by my GI that I did not have celiac disease and that the pathology reports confirm this. I understand that the pathology is the golden standard and was kind of shocked because of all the problems that were found in the endoscopy. I understand that having ulcers and high acid production can cause some changes, but to the best of my knowledge there should NOT be damage to the furthest parts of my duodenum (maybe just the duodenal bulb). My GI basically brushed it off and put me on PPIs to treat the ulcers. He rushed through the consult and did not want to really address the changes to my duodenum that I feel are still a concern. He was very expressive in stating that I did not have celiac, but when I protested about the changes to my duodenum (which are not normal) he just said not to change my diet and to take the pills for the ulcers. Since I have been back on gluten, I have had constant headaches, diarrhea, nausea, constant bloating, fatigue, and my anxiety has come back. I don't want to be one of those people that has to suffer more through this but, at this point it is REALLY nagging me!!! I also cannot take the stomach pains and diarrhea/ crappy fatigue feeling anymore. I hate to sound like the person who is seeking a diagnosis when there is none, but i feel as though there is major convincing evidence that he is refusing to take into account due to the pathology report (which he could have taken bad samples to begin with). Thank you for all of the advice or help that you may be able to give me. I truly appreciate it!!!
  9. I could use some input from people who have some experience. I recently got tests back that were a little bit more frustrating than I thought. I tested mildly positive a week ago on the celiac panel for Gliadin Igg Transglutaminase with a result of 22 (Ref. is <20) and negative for both EMA and Ttg Iga. Other notable findings: Triglycerides: 150 (high) (ref. <150) HCT: 38.7 (low) (ref. 39.2-52.5) My doctor emailed me back and said that she was suspicious and was willing to go forward with a GI consult and endoscopy. She ordered more tests, and I requested a total serum Iga since it was not part of the panel with these results: Iron: 99 (Ref. 45-150) IgA Serum: 88 (Ref. 70-300) seems on the lower end to me... but is "normal" Folic Acid: 16.33 (Ref. > 5.38) Vit B12: 427 (Ref. 211-911) Clearly from these labs I am not malnourished and am sitting here scratching my head. I thought I was IgA deficient since when I was a kid I had chronic sinus infections that led to the removal of my tonsils and adenoids. However, my IgA levels are "normal" even though they are on the lower side. Other than the symptoms that I have, I am a healthy mid-twenties male. Another very interesting thing to note is that my sister and my first cousin both have celiac disease as well as my uncle who is blood related. There are a lot of thyroid issues in my family as well. My symptoms are foggy headedness, intense anxiety at times, slight anemia. I have a feeling that I may not have celiac based off of these test results. My doctor said she was willing to move forward with a GI and endoscopy but I was hoping for something more substantial to hold on to before that. The problem lies in the fact that I have a MAJOR exam coming up at the end of the month for which I constantly get anxiety. I want to go gluten free before this to see if it helps with my concentration (I can read a page and sometimes forget what I read, which is eternally frustrating.) My plan is to go gluten free from now until the test and then go back on gluten for a few months for an endoscopy (I know this is crazy but my future pretty much rests on this and I cannot mess it up). Any advice would be greatly appreciated. Thanks in advance and God Bless.