Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 I have a friend across the street who has 2 kids with celiac and she told me that you have to be on alot of gluten for at least a month or two for the results to be accurate. With my son I kept wondering if he has celiac b/c I see with him that he reacts to gluten as well when ever he has any gluten his stomach swells up like a balloon and gets terrible diarrhea. When they did the blood test on him he was just nursing so that wasn't accurate. When they did the biopsy it also came back negative but he was only on gluten for a week before hand and that wasn't enough time. When they went in they said he looked a mess inside and it looked like celiac but the biopsies all came back normal so I don't know but I do notice when I keep him off the gluten his diarrhea is much better and the swelling in his stomach is better. Shana [eosinophilic gastroenteritis] celiac > Has anyone heard from their doctors that you could test negative for > celiac disease (the blood antibody test) and still have it if you have > had minimal exposure to gluten? iel has a very strong, immediate > and dramatic allergy to gluten, so he has had very little since he was > born, but I was told by one doctor that celiac should be looked for > again if he ever resumes gluten containing foods because we may have had > a false negative. I also know of one celiac kid who has E/G and > multiple food allergies, the theory being that the celiac disease left > his system more permeable to protein than it would have been and along > with his genetics set him up for developing stronger allergic disease > than he may have had otherwise. I think having reflux or other infant > G-I conditions may act the same way in some of our kids. iel > seems to have severe reflux, and EE, and food allergies and asthma. > There isn't one treatment that gets him under control, although > everything helps. > > Thanks for listening to my rambles, > > Vicki > > > > > ------------------------------------------------------------------------ > Now the best and coolest websites come right to you based on your > unique interests. eTour.com is surfing without searching. > And, it's FREE! > http://click.egroups.com/1/3013/5/_/474479/_/955493585/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 i have been reading alot about celiac here in the room. when my daughter michelle first was sick this is what she was to have it came back in the blood test by the villi were still up and not flat. i find a great site with much information on this illness www.celiac.com they give everything from history to what the causes are to the foods that are gluten free. it has been a great help. it is not just cause by wheat but also from barley and oats some are lactose intolerance also. the blood test can go either way the only way to really know if you have celiac is to have the biospy of the small intentinse to see the villi. if anyone needs more information on this illness please let me know one of the national directors for the illness is my neighbor and she will be more than happy to give you any information you need. Donna, mother to 15 ee, 13 allergy to all antibodics, Sara 10 ADHD, Micheal 4 and one due in August ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Hey Donna, What day is your baby due? I have a baby due in August! Do you know if it is a boy or a girl yet? [eosinophilic gastroenteritis] celiac > i have been reading alot about celiac here in the room. when my daughter > michelle first was sick this is what she was to have it came back in the > blood test by the villi were still up and not flat. i find a great site > with much information on this illness www.celiac.com they give everything > from history to what the causes are to the foods that are gluten free. it > has been a great help. it is not just cause by wheat but also from barley > and oats some are lactose intolerance also. the blood test can go either > way the only way to really know if you have celiac is to have the biospy of > the small intentinse to see the villi. if anyone needs more information on > this illness please let me know one of the national directors for the > illness is my neighbor and she will be more than happy to give you any > information you need. > > Donna, mother to 15 ee, 13 allergy to all antibodics, > Sara 10 ADHD, Micheal 4 and one due in August > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > > ------------------------------------------------------------------------ > High rates giving you headaches? The 0% APR Introductory Rate from > Capital One. 9.9% Fixed thereafter! > http://click.egroups.com/1/3010/5/_/474479/_/955759736/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Dear Glo... I'd say you're definitely the exception to the rule! While others have had the same surgery with some success (pain relief to varying degrees lasting from a few weeks to a couple of years)- there are so many people that get NO relief from the surgery and come away angry about it and very frustrated. Can you tell us more about YOUR surgery?? Where did you have it, who was your surgeon, what are you doing differently now, did you take enzymes before/after, what was your diet before/after, etc... I know it sounds like a lot of questions, but your answers could be so helpful to so many people... We would all be SO grateful to you. Thank you Glo, and more importantly, CONGRATULATIONS on your new life... That is SO wonderful and glorious. Spectacular, especially knowing where you've been... as we do. Peace, Terry in KC << I had a celiac block a little over a year ago, and since that time I have not had any pain or discomfort. My doctor told me that I am one lucky lady. I didn't have a life for over 2 years because of the pain. I had lost 30 lbs and and was so sick that I wanted to just die. This is a miracle to me and my doctor. Now I have regained my weight and I feel totally like a new person. Has anyone else had this procedure with the results like mine? GLO >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Dear Glo... I'd say you're definitely the exception to the rule! While others have had the same surgery with some success (pain relief to varying degrees lasting from a few weeks to a couple of years)- there are so many people that get NO relief from the surgery and come away angry about it and very frustrated. Can you tell us more about YOUR surgery?? Where did you have it, who was your surgeon, what are you doing differently now, did you take enzymes before/after, what was your diet before/after, etc... I know it sounds like a lot of questions, but your answers could be so helpful to so many people... We would all be SO grateful to you. Thank you Glo, and more importantly, CONGRATULATIONS on your new life... That is SO wonderful and glorious. Spectacular, especially knowing where you've been... as we do. Peace, Terry in KC << I had a celiac block a little over a year ago, and since that time I have not had any pain or discomfort. My doctor told me that I am one lucky lady. I didn't have a life for over 2 years because of the pain. I had lost 30 lbs and and was so sick that I wanted to just die. This is a miracle to me and my doctor. Now I have regained my weight and I feel totally like a new person. Has anyone else had this procedure with the results like mine? GLO >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Dear Glo... I'd say you're definitely the exception to the rule! While others have had the same surgery with some success (pain relief to varying degrees lasting from a few weeks to a couple of years)- there are so many people that get NO relief from the surgery and come away angry about it and very frustrated. Can you tell us more about YOUR surgery?? Where did you have it, who was your surgeon, what are you doing differently now, did you take enzymes before/after, what was your diet before/after, etc... I know it sounds like a lot of questions, but your answers could be so helpful to so many people... We would all be SO grateful to you. Thank you Glo, and more importantly, CONGRATULATIONS on your new life... That is SO wonderful and glorious. Spectacular, especially knowing where you've been... as we do. Peace, Terry in KC << I had a celiac block a little over a year ago, and since that time I have not had any pain or discomfort. My doctor told me that I am one lucky lady. I didn't have a life for over 2 years because of the pain. I had lost 30 lbs and and was so sick that I wanted to just die. This is a miracle to me and my doctor. Now I have regained my weight and I feel totally like a new person. Has anyone else had this procedure with the results like mine? GLO >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Hi Glo... I had the procedure performed about 3-4 weeks ago. They told me it would take 1-2 weeks to take affect (if I was in the 50% of people who experience some success) and sure enough, 8 days later, I got up and felt GREAT! I had forgotten what if felt like to feel great! I was so hopeful that this procedure would work as I had a surprise vacation (from my husband), last week (I just returned a few hours ago), my sons graduation in 1 1/2 weeks, my in-laws 50th Wedding Anniversary, and a speaking engagement at a conference, all within about 3 or 4 weeks. It's my hope that these results will last at least 4 weeks. For about 4 days, I had nearly NO pain at all.. since then I've experienced some pain in varying degrees, but nothing near what I was experiencing prior to the celiac block. I continue to deal with the nausea and fatigue, but I'm pushing myself to exercise as much as possible and fight this fatigue. I was able to really enjoy this vacation...not a relaxing one at all. I returned to the hometown (city) I was born in, San Francisco. I was able to visit old friends, past my old home, etc. My husband and I were able to enjoy many activities that would have been impossible to consider prior to this procedure. I feel I have a new lease on life! I'm more careful not to overdo it as I did initially, ensuring I rest when needed and taking my meds as needed (I was trying to completely do without the pain meds... which I was able to for extended amounts of time). If anyone has any questions, please don't hesitate to ask me. I encourage others to consider this option as an option for short term relief. As a general rule, it usually lasts 4-6 weeks, at least that's what I've been told. Fortunately there have been others who have experienced long term results. I'm so happy for those people (and pray that I may fall into that rare category!). Armantrout rmntrout1@... Midwest Representative Pancreatitis Association, Internat'l Re: Celiac > Dear Glo... > > I'd say you're definitely the exception to the rule! While others have had > the same surgery with some success (pain relief to varying degrees lasting > from a few weeks to a couple of years)- there are so many people that get NO > relief from the surgery and come away angry about it and very frustrated. > > Can you tell us more about YOUR surgery?? Where did you have it, who was > your surgeon, what are you doing differently now, did you take enzymes > before/after, what was your diet before/after, etc... I know it sounds like a > lot of questions, but your answers could be so helpful to so many people... > We would all be SO grateful to you. > > Thank you Glo, and more importantly, CONGRATULATIONS on your new life... That > is SO wonderful and glorious. Spectacular, especially knowing where you've > been... as we do. > > Peace, > Terry in KC > > > > << I had a celiac block a little over a year ago, and since that time I have > not > had any pain or discomfort. My doctor told me that I am one lucky lady. I > didn't have a life for over 2 years because of the pain. I had lost 30 lbs > and and was so sick that I wanted to just die. This is a miracle to me and > my doctor. Now I have regained my weight and I feel totally like a new > person. Has anyone else had this procedure with the results like mine? > GLO >> > > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: Pancreatitis (AT) Yahoo > > To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribe (AT) Yahoo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Hi Glo... I had the procedure performed about 3-4 weeks ago. They told me it would take 1-2 weeks to take affect (if I was in the 50% of people who experience some success) and sure enough, 8 days later, I got up and felt GREAT! I had forgotten what if felt like to feel great! I was so hopeful that this procedure would work as I had a surprise vacation (from my husband), last week (I just returned a few hours ago), my sons graduation in 1 1/2 weeks, my in-laws 50th Wedding Anniversary, and a speaking engagement at a conference, all within about 3 or 4 weeks. It's my hope that these results will last at least 4 weeks. For about 4 days, I had nearly NO pain at all.. since then I've experienced some pain in varying degrees, but nothing near what I was experiencing prior to the celiac block. I continue to deal with the nausea and fatigue, but I'm pushing myself to exercise as much as possible and fight this fatigue. I was able to really enjoy this vacation...not a relaxing one at all. I returned to the hometown (city) I was born in, San Francisco. I was able to visit old friends, past my old home, etc. My husband and I were able to enjoy many activities that would have been impossible to consider prior to this procedure. I feel I have a new lease on life! I'm more careful not to overdo it as I did initially, ensuring I rest when needed and taking my meds as needed (I was trying to completely do without the pain meds... which I was able to for extended amounts of time). If anyone has any questions, please don't hesitate to ask me. I encourage others to consider this option as an option for short term relief. As a general rule, it usually lasts 4-6 weeks, at least that's what I've been told. Fortunately there have been others who have experienced long term results. I'm so happy for those people (and pray that I may fall into that rare category!). Armantrout rmntrout1@... Midwest Representative Pancreatitis Association, Internat'l Re: Celiac > Dear Glo... > > I'd say you're definitely the exception to the rule! While others have had > the same surgery with some success (pain relief to varying degrees lasting > from a few weeks to a couple of years)- there are so many people that get NO > relief from the surgery and come away angry about it and very frustrated. > > Can you tell us more about YOUR surgery?? Where did you have it, who was > your surgeon, what are you doing differently now, did you take enzymes > before/after, what was your diet before/after, etc... I know it sounds like a > lot of questions, but your answers could be so helpful to so many people... > We would all be SO grateful to you. > > Thank you Glo, and more importantly, CONGRATULATIONS on your new life... That > is SO wonderful and glorious. Spectacular, especially knowing where you've > been... as we do. > > Peace, > Terry in KC > > > > << I had a celiac block a little over a year ago, and since that time I have > not > had any pain or discomfort. My doctor told me that I am one lucky lady. I > didn't have a life for over 2 years because of the pain. I had lost 30 lbs > and and was so sick that I wanted to just die. This is a miracle to me and > my doctor. Now I have regained my weight and I feel totally like a new > person. Has anyone else had this procedure with the results like mine? > GLO >> > > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: Pancreatitis (AT) Yahoo > > To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribe (AT) Yahoo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 > Hi Glo... > > I had the procedure performed about 3-4 weeks ago. They told me it would > take 1-2 weeks to take affect (if I was in the 50% of people who experience > some success) and sure enough, 8 days later, I got up and felt GREAT! I had > forgotten what if felt like to feel great! I was so hopeful that this > procedure would work as I had a surprise vacation (from my husband), last > week (I just returned a few hours ago), my sons graduation in 1 1/2 weeks, > my in-laws 50th Wedding Anniversary, and a speaking engagement at a > conference, all within about 3 or 4 weeks. It's my hope that these results > will last at least 4 weeks. > > For about 4 days, I had nearly NO pain at all.. since then I've experienced > some pain in varying degrees, but nothing near what I was experiencing prior > to the celiac block. I continue to deal with the nausea and fatigue, but > I'm pushing myself to exercise as much as possible and fight this fatigue. > I was able to really enjoy this vacation...not a relaxing one at all. I > returned to the hometown (city) I was born in, San Francisco. I was able to > visit old friends, past my old home, etc. My husband and I were able to > enjoy many activities that would have been impossible to consider prior to > this procedure. I feel I have a new lease on life! I'm more careful not to > overdo it as I did initially, ensuring I rest when needed and taking my meds > as needed (I was trying to completely do without the pain meds... which I > was able to for extended amounts of time). > > If anyone has any questions, please don't hesitate to ask me. I encourage > others to consider this option as an option for short term relief. As a > general rule, it usually lasts 4-6 weeks, at least that's what I've been > told. Fortunately there have been others who have experienced long term > results. I'm so happy for those people (and pray that I may fall into that > rare category!). > > Armantrout > rmntrout1@i... > Midwest Representative > Pancreatitis Association, Internat'l > > > Re: Celiac > > > > Dear Glo... > > > > I'd say you're definitely the exception to the rule! While others have > had > > the same surgery with some success (pain relief to varying degrees lasting > > from a few weeks to a couple of years)- there are so many people that get > NO > > relief from the surgery and come away angry about it and very frustrated. > > > > Can you tell us more about YOUR surgery?? Where did you have it, who was > > your surgeon, what are you doing differently now, did you take enzymes > > before/after, what was your diet before/after, etc... I know it sounds > like a > > lot of questions, but your answers could be so helpful to so many > people... > > We would all be SO grateful to you. > > > > Thank you Glo, and more importantly, CONGRATULATIONS on your new life... > That > > is SO wonderful and glorious. Spectacular, especially knowing where > you've > > been... as we do. > > > > Peace, > > Terry in KC > > > > In a message dated 5/14/02 1:29:46 PM, Bestglo@a... writes: > > > > << I had a celiac block a little over a year ago, and since that time I > have > > not > > had any pain or discomfort. My doctor told me that I am one lucky lady. > I > > didn't have a life for over 2 years because of the pain. I had lost 30 > lbs > > and and was so sick that I wanted to just die. This is a miracle to me > and > > my doctor. Now I have regained my weight and I feel totally like a new > > person. Has anyone else had this procedure with the results like mine? > > GLO >> : Welcome to the wonderful world of EUS celiac blocks!! I don't know if I'd be here to write this without having undergone a series of them. -Ellen Grove > > > > > > > > PANCREATITIS Association, Intl. > > Online e-mail group > > > > To reply to this message hit " reply " or send an e-mail to: > Pancreatitis@Y... > > > > To subscribe to this e-mail group, simply send an e-mail to: > Pancreatitis-subscribe@Y... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 , I'm glad the the block is working for you and I'll keep you in my prayers that it continue to work for you. I have several done on me in 98, but they didn't work, so then I had the implanted medtronic pain pump done. I receive constant doses of morphine from it with 3 bolis a day, which helps with my pain. Then I have my break thru pain med, for the really bad times. I hope the block continues to give you the releif that you are experiencing now, so you be able to make it thru all your engagements. Take Care, Louie in WV Re: Celiac > > > > Dear Glo... > > > > I'd say you're definitely the exception to the rule! While others have > had > > the same surgery with some success (pain relief to varying degrees lasting > > from a few weeks to a couple of years)- there are so many people that get > NO > > relief from the surgery and come away angry about it and very frustrated. > > > > Can you tell us more about YOUR surgery?? Where did you have it, who was > > your surgeon, what are you doing differently now, did you take enzymes > > before/after, what was your diet before/after, etc... I know it sounds > like a > > lot of questions, but your answers could be so helpful to so many > people... > > We would all be SO grateful to you. > > > > Thank you Glo, and more importantly, CONGRATULATIONS on your new life... > That > > is SO wonderful and glorious. Spectacular, especially knowing where > you've > > been... as we do. > > > > Peace, > > Terry in KC > > > > In a message dated 5/14/02 1:29:46 PM, Bestglo@a... writes: > > > > << I had a celiac block a little over a year ago, and since that time I > have > > not > > had any pain or discomfort. My doctor told me that I am one lucky lady. > I > > didn't have a life for over 2 years because of the pain. I had lost 30 > lbs > > and and was so sick that I wanted to just die. This is a miracle to me > and > > my doctor. Now I have regained my weight and I feel totally like a new > > person. Has anyone else had this procedure with the results like mine? > > GLO >> : Welcome to the wonderful world of EUS celiac blocks!! I don't know if I'd be here to write this without having undergone a series of them. -Ellen Grove > > > > > > > > PANCREATITIS Association, Intl. > > Online e-mail group > > > > To reply to this message hit " reply " or send an e-mail to: > Pancreatitis@Y... > > > > To subscribe to this e-mail group, simply send an e-mail to: > Pancreatitis-subscribe@Y... > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.