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mom26boys

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About mom26boys

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  1. Thank you all so much for your responses. I'm sorry it took me so long to reply back. I love this forum because everyone here is so knowledgable and always willing to help. It is so nice to have a forum to go to where you are validated and don't feel like you're going crazy like the conventional medical establishment would have you believe! I don't understand the medical establishment's reluctance to label someone as celiac, when all test results/symptoms point to it. It seems like every doctor I've seen about this, refuses to give me the "official" diagnosis. Its almost as if that is going to cost them something!!! Emilushka, thank you for responding to my post. As a future doctor who understands celiac from a personal level, you will be in a great position to make a difference to folso many people who suffered for years without any hope. Keep up the great work and I wish you great success with your career!!! ravenwoodglass, you have no idea how much you have helped me since I began my gluten-free journey over a year ago! You have responded to all of my posts and have always offered some great advice! Thank you for what you do on this forum--Its people like you who make this forum so invaluable to people out there searching for a little hope and not finding it in the mainstream medical community. Thank you!!! cassP, thank you for your insight and your response! It makes so much since to me. I had read that EMA is 100% specific to celiac, but no doctor I've talked to has confirmed that and they have told me that it could be all kinds of other things, but none can give me examples of what it could be! I am beginning to think they just don't know and don't want to admit it. Anyway, thank you all again for what you do. You really do make a difference here. This forum is the best!!!
  2. Hi! I am hoping that someone on the forum can help me with my genetic test results, since now I'm more confused than ever! First, a little background... I had a positive endomysial antibody screen last year. GP referred me to a GI, and tried several without success. None thought I had celiac or any issues associated with gluten because I am overweight. I decided to just go gluten-free on my own and felt much better immediately!!! I have been gluten-free for over a year, but about 6 months ago, I began to see a functional medicine doctor who tested me for all kinds of things. The digestive panel came back with lots of malabsorption, but because the igA came back negative, he didn't think gluten was my problem. I tried going back on gluten, but after a couple of weeks stopped because I couldn't take the torture anymore! I knew that no matter what any doctor said, I couldn't eat gluten. I told this to my doctor the next time I saw him and he had me order the enterolab saliva test, and he said that would tell us for sure. Here are my results from Enterolab: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0202 Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2) Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302). Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a second gene that by itself can rarely be associated with celiac sprue (HLA-DQ2 other than by HLA-DQB1*0201), and when associated with one of the main celiac genes, strengthens the predisposition to getting the disease, and with more severe manifestations. Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac sprue may be more severe After reading the results, I thought that finally I had a diagnosis for celiac--not that I want one, but I've been struggling with doctors telling me that there is nothing wrong with me for so many years that I would love to finally have an official dx, even though I know I don't need one to be gluten-free. I went to the doctor today to discuss the results and he said that I don't have celiac, because I need 2 genes to have celiac and I only have one celiac gene and one gluten sensitivity gene. I'm now more confused because I was under the impression that if you have one gene and have the symptoms, you have celiac. He did say now that the problems I'm having are secondary and caused by the gluten and that I have to be gluten-free for the rest of my life--which I already knew, and he suggested that I put the entire family on a gluten-free diet, which they mostly are unless we eat out, since they will carry at least one or the other gene. Here is where I'm mainly confused: 1. I thought that you can have celiac with one gene. 2. Doc says I don't have celiac, but I need to be gluten-free for the rest of my life. I thought all along the problems I've had were from celiac (self-diagnosed), but if I don't have celiac then why do I need to go gluten-free for the rest of my life? 3. What is the difference between celiac and gluten sensitivity/intolerance? Anyway, I would REALLY appreciate any help in explaining to me what these results mean. I'm not scientifically minded and I've tried to read explanations as to how to interpret genetic results, but its going way over my head. I have always gotten great feedback and advice on this site so I thought I would try again. Sorry for the lengthy post but thank you for your time!!!
  3. Thanks Jillian! Yes, I think you are right about the sinus infection. Its a combination of that and bronchitis. I went to the doctor last week and got an antibiotic, which I took and it seem to knock it out, but now its back much worse than before! I might need a different one, although I hate taking antibiotics and haven't needed one for over 2 years. It just seems strange that I would be getting sicker after going gluten-free, but you may have a point about my body busily healing itself, so I hope I can get over the "hump" soon. Thanks again for your reply!
  4. mom26boys

    Test Results

    Thank you! And thank you for the link back here. Initially when you said you had replied to my previous post, I thought it was a thread that I had posted on that someone else asked the same thing and I posted that the same thing was happening to me. I lost track of the thread and have't been able to find it to see if there were any other responses, since I don't remember who the orinigal poster was. Anyway thats the one I thought you were referring to, so I'm sorry if I seem like a complete idiot! I forgot that I also put that in this post so thank you so much for replying. It is exactly how I feel right now--like I catch everything going around and more severely than ever. I've had this coughing flu like you mentioned for going on 2 weeks now, and we are on a vacation which makes it worse! I took antibiotics for it last week, which I never do, but I hoped that it would knock it out before our trip, but since we got here on Sunday, it has come back and gotten much worse! Hopefully, like you, I can look forward to this phase being over with and getting no respiratory infections. I am sorry about your allergies. My husband and son are very allergic to thngs like pollen and other things, so I know how difficult it is t deal with. Hopefully those will be over for you soon too! Thanks again!!!
  5. Mushroom, I'm trying to find that other post. I remember it was someone else's thread and I commented on it because I was experiencing the same thing. I'm still new to all this and I haven't figured out an easy way to find that thread. If you happen to know of any shortcuts to find it, I would really appreciate it. I am in the midst of one of those colds and my head feels like its about to explode! I just can't figure out why I'm getting so many colds. Thank you so much
  6. Thank you! I forgot that I replied to someone's post about that a while back. I need to look for that again, since it has gotten worse since then.
  7. Hi! I've been gluten free for about 6 weeks now, and have none of the symptoms that prompted me to figure out that celiac may be my problem. Before going gluten free, I NEVER got colds. The last time I had gotten sick was almost 3 years ago and I believe that was more of a cleansing reaction when I started to see a naturopath and he started me on an herbal therapy and accupuncture for my adrenals. Before that it had been a good 1-2 years before I had gotten sick with a cold. Since going gluten free 6 weeks ago, I have gotten 4 colds! It seems I get better and I'm good for a couple of days and then I get sick again. Has anyone else experienced this after going gluten free? Any ideas or suggestions? I'm starting to wonder which is worse--feeling sick every time I eat, or having a perpetual cold! I would really appreciate anyone's input on this
  8. mom26boys

    Test Results

    Thank you again, Ravenwood. You are absolutely right about listening to my body! I've been thinking that maybe I'm crazy and this is all in my head, but my body yells at me whenever I do eat any gluten so that is my answer. After all these years of knowing something is definitely wrong and no one being able to help me figure it out, it would just be so nice to have validation and know that I wasn't crazy. I will still pursue the genetic testing, but like you said, its not something I have to do right away so I can live with that. Thank you again for time and support you put into this forum! It truly has been a blessing for me to have this forum!
  9. mom26boys

    Test Results

    Thank you so much! I thought so too, but these doctors take a look at me and since I don't fit the celiac profile, they tell me the positive EMA could be caused by all kinds of other things, which even if that were the case, it would seem to me that as doctors they would want to find out what could in fact be causing it to be positive. Everything I've read on EMA says its 100% specific to celiac, and thankfully my gp says so too, but he needed to refer me to a specialist. I am off gluten now and feeling much better (besides the getting lots of colds that I never used to get before), and I know I don't need the doctor's permission to go off gluten, even though for some reason the gastros I've seen seem seem to think you do!!! After my experienced with these gastroenterologists, I started to think that maybe I was crazy and it was all in my head, but after listening to my body, I know that I'm not. Thank you for restoring my sanity!!!
  10. I am now more confused than ever with my test results and hope someone can help me. I had a positive endomysial antibody screen that was ordered by my primary care physician. His office told me it appears that I have celiac, so they sent me to a gastroenterologist. The gastro said the endomysial antibody wasn't the right test and that I needed a TTG Antibody. Before getting my first test (endomysial antibody), I tried the gluten-free diet for 3 weeks and could not believe the improvement in my symptoms, especially in the fatigue and aching joints. This is what prompted me to get tested for celiac. When that test came back positive, part of me was ecstatic to finally have an answer for all the undiagnosed problems I've had over the years. When I had the endomisial antibody, I had gone back on the gluten, but not as much as before and the doctor told me it wouldn't matter. Even with not having had that much gluten, this test came back positive. The results for the TTG test the specialist ordered are: TTG Antibody, IGG <3 (ref range <7 u/ml) TTG Antibody, IGA <3 (ref range <5 u/ml) Immunoglobulin A 229 (ref range 81-463mg/dl) Now for this test, I had been back on gluten for several weeks prior, but would give myself "breaks" without gluten for 2-3 days at a time because I was feeling so bad being back on the gluten. When I saw the specialist, he told me I needed to be on gluten for 10 days, then he said 7 would be fine. I got back on gluten full force and endured it for 7 days, counting the days I could finally be off of it for good, until I did the blood test, including having pancakes the morning of the test. I just received a copy of my "normal" results and I'm more confused than ever. The previous test was positive, even though my gluten was somewhat decreased, and this test, where I stuffed myself full of gluten was normal. I have read that the endomysial antibody screen is specific to celiac, but now this other test is showing these levels to be normal. I have read that there are lots of false positives, but I truly expected this test to be abnormal, since the other one was too. I realize that the true answer comes from how I feel going gluten free and I do feel much better. The only thing I'm noticing different is that I'm getting sick with colds now that I'm off gluten, when I haven't gotten sick with a cold in years. Don't know if thats related or not, but other than that I feel great and have no desire to ever eat gluten again. I'm sorry for the long post, but as I mentioned before I am REALLY confused and could sure use some help understanding. I have read so much about all these tests and celiac in general that I feel like one of those people on the Bing commercials with information overload. I would really appreciate any information or advice that can help me figure out if what I have is celiac or a gluten intolerance. I know I could just go off the gluten and not worry about it, but I have a lot of kids, and I feel I owe it to them to find out for sure. Plus, so many people and doctors have looked at me like I'm from another planet for thinking that my problem could be celiac because I don't fit the textbook celiac profile, that I feel, for my own sanity, that I need to know for sure either way. Thanks so much!!!
  11. I'm new to all this myself, but it seems to me that you could also get yourself tested through enterolab or one of the other labs that does the genetic tests to see if you have the gene for it, since you don't need a doctor's order for it and unless you submit it to your insurance for reimbursement, then they wouldn't have record of it. If you have the gene and you have a positive reaction going gluten free, then you can probably assume you have it and you don't have to go through your insurance company and risk having problems when you switch. Then you will know for sure that you need to go gluten free. The only problem I see with that is that if you want to be "officially" diagnosed whenever you switch to your own insurance, then you would have to go back on the gluten for the "official" tests, which won't be any fun after you have been off of it for a while. Again, I'm new to this myself, so forgive me if I'm wrong. Hopefully others will offer you more advice as well
  12. I haven't been, but I would love to hear how your appt. went, if you wouldn't mind
  13. I did a 3 week gluten free trial and the first week was hard, especially the first 3 days. I felt like I was having withdrawal symptoms--constant headache, lethargy, inability to concentrate, nausea, etc. Thankfully, I had read somewhere that in some people the gluten reacts like opiates and so when you stop, you can experience withdrawal symptoms, so that kept me going because at first I thought that maybe I was just wrong about gluten being my problem. The 2nd week was much better than the first and each day I felt a little better. By the third week I was feeling great! I had energy, my joints didn't hurt, I didn't need as much sleep, my gi problems were gone, my brain fog had lifted and I could concentrate, etc. It happened gradually, but one day I just noticed I didn't have any of those things!!! Anyway, I had to get back on it to get a blood test (whcih came back positive), and then I knew I needed to be on it for my biopsy, but I "cheated" and would take 2-3 days off just because I felt so much worse after adding the gluten back after the 3-week trial. My doc wants me to do another blood test this week and said if the numbers are high enough, he would dx me without a biopsy, so after my test on Wed., I'm back off the gluten and I can't wait! That short 3 weeks--especially the last week--told me what I needed to know, regardless of whether I'm celiac or not, so I'm definitely going off of it for good. I strongly encourage you to give it more time. I don't think 1 week is long enough. Definitely try it for at least 3-4 weeks. Just my 2 cents, for whatever its worth
  14. Yes, you are right. Thank you again
  15. Yes, you are right. I have made up my mind that no matter what these tests say, as soon as I go to the lab, I am gluten free! That will have to be enough of a diagnosis for me. I am at the point of desperation and years of misdiagnosis, and as someone else put it who responded to one of my previous points, no matter what these doctors say, I don't need their permission to go gluten free. So yes, I will go ahead and have the panel done first and do the genetic afterwards. Thank you for the link you sent me too. It did answer a lot of questions. I was mainly confused because I thought the endomysial screen was 100% specific to celiac, but I will get the rest of them done too as that will hopefully paint a better picture. Thanks again!
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