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About nan55

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  1. Thank you, Happygirl, for your detailed answer! Thanks specially for explaining that a negative anemia test does not necessarily mean no gluten sensitivity. I was wondering how he could have a malabsorption problem like celiac and not have anemia. I do not have the results yet, but I won't be as puzzled if the tests come back negative, Thanks! Thank you for the link with the tests explanation. I've read it a few times (I'm still not understandind everything!), but I might bring a copy to my doctor next time I see her! Thanks also for the book reference. I went to the library last weekend and was pleasantly surprised to see a lot of books about gluten-free cooking (I borrowed most of them!) But there were no books about the disease itself, so I will probably buy the one you recommended. I'm in Canada, in the Montreal region. Presently, there is a severe doctor shortage. I'm told I'm very lucky to have a doctor for my sons (I cannot find any for me), so unfortunately, looking for a more knowledgeable doctor is not really an option right now! But if anyone knows of a doctor or a clinic more familiar with celiac in the region that agrees to take new patients, I would appreciate any suggestion! Nancy Thanks, Ursula, for your answer! I’ve finally decided that we will try the gluten free diet for a year. I’m hoping to start in mid-november, to give me time to learn more before taking the plunge, and to organise myself and my kitchen. After reading more about the specifics of gluten free diet, I’m slowly getting more comfortable with the idea. My son has leg pains like you did, and they seem very painful. He has an unusually high tolerance for pain (barely cries when he hurts himself, didn’t even flinch when they drew blood for the tests) but when he has legs pains at night, I find him sobbing and squirming from the pain, so I know it must be severe. A few times, during the day, he was limping, and unable to clim the stairs due to the pain. Thankfuly, this doesn’t happen every day, and the medication is very effective. But it would be great if those pains went away on the gluten free diet! You also say you have asthma, and it improved when you became gluten free? Really, that would be amazing if my other son’s asthma was to improve when we try the gluten free diet. That’s one of the reasons that decided me to put the whole family on this diet. I really can’t see the connection between gluten and asthma, but testimonies like yours convince me that I have nothing to loose by trying it! I’m trying not to get my hopes up to much, but I’m more than willing to be pleasantly surprised! Nancy Thank you for pointing that out! But when my son was little (before he was 2) he did have every test imaginable (hormones, thyroid, cystic fibrosis and a lot I don’t remember) to see why he was not gaining any weight. We went to the hospital for a different test almost every week, for a few months. All the results were negative. At that time, I reluctantly accepted the fact that he would not develop fully, because I didn’t know what else to do. Only recently did I learn that it could be gluten related, even if he has very few symptoms. That’s why I’m a little excited at the propect of being able to do something to try to help him! But at the same time, I don’t want to do something as radical as the gluten free diet just because I’m desperate to do something to help him. (I’m not sure if I’m making any sense here! ) After reading the comments from all the nice people on this board, I think that there are enough hints that his problem may be gluten related. I will try the gluten free diet for a year, to see if there is any improvement. If there isn’t, at least I will know I at least tried everything I could! Nancy Thank you for your advice! I will try to read further about this casein intolerance. I must admit I am a little puzzled by all the different food intolerances I see mentioned on this board. How do you identify what foods to watch out for??? I still am a little aprehensive about just going gluten free, I can’t even imagine what it must be like for those who have multiple intolerances. I guess I will take it one step at a time, and start with gluten, but I will certainly read more and watch out for other possible intolerances. (Sincere thanks also for your " Newbie survival kit "!!!) Nancy Nancy, thank you for sharing your son’s story with me! I see so many behavior similarities with my son!!! I’m so glad that your little boy bloomed like that. I had tears in my eyes when I read your description of how he acts now. To think that something as simple as a diet change can make that kind of difference! I’m preparing myself to start the gluten-free diet in a couple of weeks. I’m trying to go into this with not too much expectations, but I cannot help but wish my son’s health and behavior improves like yours did. Thanks! Nancy (2)
  2. First, forgive me for not answering sooner. But I avidly read all your answers! Thank you, all of you, for taking time to share your knowledge and experiences. I've only first heard about celiac disease two weeks ago, and I've learned a lot since then, specially thanks to this forum. I was really torn about wether or not we should try going gluten free, even without a diagnosis, but your replies are helping me to make a more " informed " decision. I have pretty much decided that even if the tests are negative (we will only know in another week), we will try the gluten free diet for a year to see if there is any improvement. I'm trying very hard not to get my hopes up too much. But I keep my fingers crossed : it would be so great to finally be able to do something to help him!!! Nancy Thank you for confirming that it's possible to have a gluten intolerance without digestive symptoms! This is all so new to me! Nancy I don't think they did 5 tests. Before he was 2 years old, he did have antigliadin and transglutaminase tests, and they were both negative. He just got tested again, but only for antigliadin. As I said, the doctor is sceptical he has celiac, she only agreed to the test to put my mind at ease. I didn't know enough then to ask for this panel of 5 tests. (I still don't understand what these differents tests screen for... I still have a lot of reading/learning to do!) I think the doctor told me the antigliadine test is the least specific test, and if he has celiac or something related to gluten sensitivity, it should show up in that test??? And then, if he tests positive for that, then she would order something more specific? I'm still so confused about these tests... Nancy
  3. Hi! My son’s doctor is well-meaning but doesn’t seem to know a lot about celiac or gluten sensitivity, and I have so much questions, I was hoping some of you might be willing to help me. (Forgive my errors, english is my second language.) My son is 6 1/2 years old. His symptoms now : 1) Lack of growth. He’s small and very skinny (35 pounds), but still on the bottom curve of the growth chart. He’s gained only 2 pounds during the last 2 years, but he’s eating normally. Following the suggestion of a dietetician, for the last 4 years I’ve tried to put as much calories in his food (oil in his applesauce, mayo on his fish, ketchup on his vegetables…) but he still doesn’t gain weight. But he doesn’t loose any either. 2) Leg pains. About twice a week he complains of intense leg pains. But they do go away if I give him Motrin. Up to now I thought they were growing pains. 3) Lack of memory and concentration. Too many examples to list here, but he looses and forgets everything, he’s easily distracted. The teacher say’s he’s like in his own little bubble at school. When he was younger, I thought he might be very slightly autistic. Last year I had him tested by a psychologist for attention deficit. She says he doesn’t have attention deficit, and it might just be a lack of maturity or motivation. She wants to have him tested again in a year with more precise psychological tests. He has no other symptoms. Before reading posts on this board, I thought these were unrelated problems, but now I’m wondering if they might all be related, and maybe caused by a gluten problem??? Could it be possible? The problem is, he’s never had diarrhea in his life. That’s why the doctor says it can’t be celiac. He never has stomach pains either. He looks healthy and seems to have a normal level of energy, no apparent weakness or fatigue. Does anyone know if this could be consistent with a gluten problem? When he was 2 years old, the hospital ran a lot of tests on him to see why he was failing to thrive. It all came back negative, including for celiac (antigliadine and transglutaminase, I think). Now the doctor has ordered another antigliadine test, just to reassure me I think, but she thinks it will be negative. The doctor also ordered a blood test to look for anemia. We do not have the results yet. If that blood test shows there is no anemia, does that pretty much rule out gluten sensitivity??? I’m just starting to understand a little about gluten sensitivity thanks to this forum. As I understand, there are varying degrees of gluten sensitivity? (I’m still very confused about the difference between celiac, gluten allergy, sensitivity, and intolerance.) My questions : Do you think his symptoms could be related to gluten sensitivity, even if he hasn’t lost weight and doesn’t have diarrhea? Is the antigliadine test specific for celiac or will it be positive even if he has another form of gluten sensitivity? If his test for celiac comes back negative, are there other ways to test for other forms of gluten sensitivity? (I don’t want him to go through the biopsy. I’ve read many posts about Enterolab here : is this controversial or is it generally recognised as reliable? Can they tell if he has a gluten problem other than celiac?) I was thinking of trying a gluten free diet for a year, just to see if it might help him, even if his test is negative. Do you think it would be a good idea? I don’t want to torture him (us) needlessly, so if some of you who have experience with celiac think it is unlikely to be a gluten problem, I won’t do it. But I’m willing to try it if there’s a slight chance it might help him. But since he has no diarrhea, how would I know if he is improving? Would one year be sufficient to see an improvement in his weight gain? Or in his concentration? We were thinking of putting the whole family on this gluten free diet, just to make sure there is no cross-contamination. And it might also help my other son who has severe asthma. I read elsewere that asthma symptoms sometimes diminish on a gluten free diet. Is this true??? Has someone experienced this? I’ve also had undiagnosed (despite a year of tests) intestinal problems for the last 15 years. I do not think it is celiac, as my symptoms do not match, but I’m willing to give the diet a try, maybe it will help? I would appreciate so much if some of you have tips, or similar experiences to share. And please tell me if you think I’m mistaken, and if you feel my son’s symptoms do not correspond to a gluten problem. That’s it for now, sorry for being so long, I have so many other questions, any input will be greatly appreciated!!! Nancy
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