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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 Wthrman13

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  1. New Diagnosis

    Oh dear, sorry to hear about your problems. It just sounded like in your last post that he was ok when you mentioned that he was smart enough to mention that the villi damage might have been missed. I take it he knows better now?
  2. New Diagnosis

    Thanks for the responses folks. I too am a little confused as to why the doctor prescribed steroids right away instead of an allergy test, but I just don't feel comfortable going against him at this point, especially since he seemed very confident. I'll be the first one to come back and say that I made a bad decision if it turns out in the future that gluten was the whole problem! Again, if I don't improve (and even if I do) I will take further measures, as I said. Raven, it sounds like your GI is a good one! I am very busy going into this month with my work and I don't relish the prospect of debating with the GI about something that I could have (i.e. celiac disease, especially since all the biopsies were negative) when it is confirmed that I do have something else (EE). On the other hand, I don't relish taking steroids long-term either, and if it is just gluten that is the problem, obviously it makes sense to stop eating that. That's why I'm giving it a month. After this month I'll have a little bit more breathing room to deal with this stuff and look for second opinions, etc. The problem with going gluten free right now and going on steroids at the same time is that I won't know for sure which one did the trick if I do improve. In other news, I feel much better today after going off that proton pump inhibitor! I know some of you are probably thinking, "He's making a mistake!", and I will be the first to admit if you are right! I just personally have a good feeling that this is the best course of action right now. And, I really do appreciate the advice and testimonials.
  3. New Diagnosis

    My impression is that EE is not an autoimmune disorder, but is still an immune disorder, where too many Eosinophil white blood cells are produced and congregate in the esophagus. It's essentially an food allergy condition, and your own body is not the target of the immune system in this case. I understand what you are saying, and part of me is nodding my head in agreement. On the other hand, I am willing to see if this can be controlled with the steroids, at least for a month. I'm willing to see how it works, and if I feel better, then great! In other words, I'm willing to follow the doctor's recommendation for now. If it doesn't work (and probably even if it does), I still plan on trying the gluten-free diet later. My rationale at this point is that I want to perturb one variable at a time, as any good scientific experiment does, and right now it's the steroid treatment's turn. The doctor seemed pretty confident that I did not have celiac disease. Of course, he could be wrong, and I'm not discounting that, but from my perspective, he was the one who actually examined me, and who am I to argue at this point unless I have a real good reason. I do not believe, at this point, that I do. Again, if this steroid treatment doesn't work, that's another thing. I'm not the kind of person to leave any stone unturned! I hope my reasoning makes sense, and I also hope it doesn't look like I'm giving up on the possibility of a more serious gluten intolerance/celiac disease. I'm definitely not blowing it off. I'm merely trying to go with the flow with all this new information bombarding me the past few weeks. Also, as I stated above, I was mis-informed about my brother's diagnosis. So far it actually has not been confirmed that he has celiac disease, although I was told otherwise at first (long story). Regarding the proton pump inhibitors, my doctor was in agreement that I should go off of them. I've only been on them a week, and I'll have to say that energy-wise I felt worse taking them than I did before (although today I felt better, so maybe I was starting to get used to them!). The gas pains and other issues didn't change at all.
  4. New Diagnosis

    Thanks for the link!
  5. Well, I went to see the doctor again today to hear the results of my biopsies. He said that I was negative for Celiac (small intestine was normal), but that I had Eosinophilic Esophagitis! I talked to my mother about it, and she said that she had that as well (wish I would have known that before!). Things are starting to make sense now, as one of the allergens responsible for EE, I've read, is indeed wheat. However, the doctor did not prescribe any allergy testing, but did prescribe steroids. Basically, I have to use an inhaler, just as if I had asthma, but instead of inhaling the medicine, I need to swallow it. I'm supposed to try this for a month, and then go back for another appointment to see how things are going. In the meantime, I'm supposed to go back on a normal diet, go off the proton pump inhibitors (which I'm glad, since they were making me very drowsy this past week!), and try treating with these steroids. At some point in the future, I *still* am planning on trying the gluten-free diet, but not right now given this new development (and since it actually could be multiple food allergies at work). One more thing I would like to mention. I was under the impression that my brother was indeed diagnosed with celiac disease. I just learned last week that he hasn't actually been diagnosed yet, but that the doctors were "strongly suspicious" of it. I appreciate all the help people have given me on this forum so far, and this isn't the end of the story, but it looks like, at least for now, that I don't have celiac disease after all. In the process of investigating this, however, I have turned up another disorder!
  6. Well, I had my endoscopy yesterday, and they discovered I had GERD, a constricted esophagus (which they dilated), and inflammation of both the stomach and duodenum (I believe gastritis and duodenitis, respectively). They also took small intestine biopsies to test for celiac disease, which I will hopefully hear back about in the next few days. In the meantime, I was put on a proton-pump inhibitor, and told to avoid caffeine, soda, acidic drinks, alcohol, and spicy food for at least the next couple of weeks and likely longer, until my stomach has time to heal (pretty much all the stuff I like to eat and drink!). In regards to the celiac disease, if the biopsies come back positive, I will also try to go on the gluten-free diet ASAP, but if they come back negative, I think I'll wait until I can get my other problems resolved.
  7. Well, I went to see the gastroentorologist today, and I have mixed feelings about the visit. First, I could tell he was busy, and he seemed a little rushed with me. When asking about the blood tests, he immediately said that lots of people have elevated IgG levels and aren't sick, and that the blood tests were just a screening tool anyway, and that the only way to tell for sure was with the small intestine biopsies. When asking about the low serum IgA, he seemed to think that the blood test just caught me at a low point, and that if I really did have such a deficiency, that I would be sick as a dog all the time. In short, he didn't seem to be the kind of doctor who took the blood tests very seriously, and rather seemed to be of the type that considered the biopsy to be the "gold standard". I did ask him about possible gluten sensitivity apart from Celiac, and he immediately replied that that was what Celiac was (i.e. he was equating gluten sensitivity to celiac disease, or at least seemed to be). On the other hand, he did seem to take my swallowing problems seriously (which he thinks might be as a result of acid reflux, even if I don't seem to have it chronically), as well as the need to have a celiac disease biopsy, and I'm scheduled for Thursday for the endoscopy for both conditions. In short, I really wish I could have had more time to discuss the blood test results with him. I'm not one to argue easily with a specialist, mostly because I know how it feels to have gone through many years of college and received degrees in an area, only to have someone come up to you and claim they know more than you or that you are wrong about something after reading a few articles on the internet. Don't get me wrong, I know that doctors can be wrong, and that he could be wrong about the blood test. The bottom line is, I'm going in for a biopsy on Thursday, and regardless of what the results of that are, I'm still going to try the gluten-free diet at some point in the very near future. I haven't changed my mind on that score, and I don't need a doctor to tell me if I do or do not feel better on such a diet!
  8. Again, thanks for all the responses, and your point about the gluten intolerance vs. celiac is well taken, raven. I also don't want to paper over my brother's problems during this time, and I'm trying to be very supportive of him. His symptoms leading up to his celiac disease diagnosis were, from what I could tell, more severe than anything I've had (in fact, him going to the ER for severe gas pains is what led to his diagnosis in the first place). Earlier this year he went to the doctor after having some sort of strange mental attack in which he became very confused and disoriented. From what he told me over the phone the other day, the doctor which recently diagnosed his celiac disease went back and looked over his records from that previous incident and claimed that he didn't know how the doctors at that time didn't suspect a digestive system problem in the first place! I do recall, now, an incident several years ago where I actually went to the doctor on short notice for severe localized gas pain (at the time they thought it might be appendicitis, but the blood test was negative). I haven't had anything nearly that severe since then, but still struggle with it. The doctor's appointment is bright and early tomorrow. We'll see what he has to say!
  9. Yes, that makes sense now. Thanks for the clarification!
  10. Yeah, I realized that after the original post. I didn't know at the time that the tTG and the EMA were two different things. Interesting. I'm still a little confused though. So are you saying that any food, regardless of gluten content, can raise antigliadin IgG? I thought that that specific antibody targeted gliadin molecules, which are broken down or otherwise related to gluten. Yeah, these are things I was planning on talking to the doctor about. I don't know which tests my brother was positive on, but I want to try to find out if I can (not sure if he got a copy of his blood test results or not).
  11. As I stated in my earlier thread, my brother was diagnosed with Celiac Disease a few weeks ago, and he recently had a biopsy, the results of which are still pending. I don't know what his numbers were on the blood test. I went and had a blood test a couple weeks ago, and I'll repost the results here, since I am still puzzled by something. The doctor was also not sure about my celiac disease status, so he referred me to a GI, an appointment with which I have on Monday (no biopsies or anything, just an introductory appointment). Thanks to all who responded in that other thread, but since I though of a new question, I thought I would ask again here. Well anyway, first, here are my blood test results again: Antigliadin Abs, IgA: 2 U/mL Antigliadin Abs, IgG: 41 U/mL tTG IgA: 1 tTG IgG: 1 Endomysial Antibody IgA: Negative (I assume this is just the interpretation of the above two tTG tests) Immunoglobin A, Qn, Serum: 52 After doing some more research, it seems that even if I have an IgA deficiency, as suggested by the above results, that the tTG IgG test would still likely be positive if I have celiac disease. Or is it only the tTG IgA antibody that is specific to celiac disease? Basically, what I'm asking from anyone who is more knowledgeable than I am, is what is the difference between the two tTG antibody types regarding their specificity for celiac disease? I know that the Antigliadin antibodies are not as specific, and there can be false positives, especially with the IgG antibody. Yet, as Doll stated in the other thread, the fact that I have such an elevated result for that antibody, and my family history, is very suggestive. That's what confuses me a bit about the tTG IgG result, which is very low. And, if it turns out I don't have celiac disease, what other conditions could the IgG result be heralding, if any? Could it be some sort of non-Celiac gluten intolerance? These are all questions I'm going to ask the GI when I meet him, but I thought some folks on this board might be able to clarify some of them for me in advance. Thanks again for any help!
  12. Thanks for the reply. I did not mean to be hard on the doctor. After all, he has the M.D., and I don't, and he could end up being right, theoretically, that perhaps I have a bonafide wheat allergy, in addition to, or possibly instead of celiac disease. It all depends on what happens with the GI. At this point, almost regardless of what the GI says, I'm seriously considering going on a gluten-free diet in the near future (but obviously not before any biopsy) just to see what it does.
  13. Well, the test shows normal ranges for each of the different antibody tests. For the IgG test, which I showed as 41, the normal range is 0-9. For the Immunoglobin A, Qn, Serum (perhaps short for quantity of Immunglobin A in the serum?), the normal range shows on my sheet as 70-400, whereas my test result is 52. Both of these lines are highlighted in my report (the high IgG, and the low Immunoglobin A).
  14. Thanks for the info, Darn210. I already mentioned the swallowing problem to my doctor, and I plan to mention it to the GI when I see him or her. I went and got a copy of my blood test, so here are the relevant numbers. Antigliadin Abs, IgA: 2 U/mL Antigliadin Abs, IgG: 41 U/mL tTG IgA: 1 tTG IgG: 1 Endomysial Antibody IgA: Negative (I assume this is just the interpretation of the above two tTG tests) Immunoglobin A, Qn, Serum: 52 The IgG test is the only one that shows elevated levels, and the Immunoglobin A test shows a deficiency, if I'm reading the results correctly. Thus, it looks like, again, if I'm interpreting the results correctly, that the results of the blood test are inconclusive, hence the referral to the GI.
  15. Hello folks, just an update here. I finally got the blood tests back (although I don't have a copy myself; I'm going to go in and request one today). The doctor said that some of my antibodies from the panel were elevated, but that one was more inconclusive. I'm assuming he means that 2/3 were positive and the other inconclusive. He didn't tell me which ones, which I know is important. I was half asleep when he called me this morning, so I'm not sure I heard him completely correctly on that score. He did call it a "wheat allergy", which it isn't, so this leads me to believe that he's not overly familiar with the disease. Anyway, he wants to refer me to a GI (GE?) ASAP to get this clarified, so I'll probably be talking with them early next week at the latest. At any rate, I'm going to go in to the doctor's office and get a copy of the blood tests myself. By the way, he ran a slew of other blood tests, and all of them were clear (liver function, thyroid function, etc.), and I wasn't anemic (he said I was right in the middle for that one).