Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 A few years ago I had a blood test done that came back positive for celiac disease, I believe is it antibody tests that show the risk for celiac, since that was positive he ordered a biopsy of the small intestine I can't remember the test name but they put me to sleep for it, and tube was put down my thoat. That test was negative so they said I didn't have it, the symptoms I was having at the time went away and we didn't address it again. Funny you bring it up now because I have been researching this and wonder the same thing as you, I think I'm going to ask my doctor, about any known connections. & nbsp; -- Sent from my Palm Pixi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 A few years ago I had a blood test done that came back positive for celiac disease, I believe is it antibody tests that show the risk for celiac, since that was positive he ordered a biopsy of the small intestine I can't remember the test name but they put me to sleep for it, and tube was put down my thoat. That test was negative so they said I didn't have it, the symptoms I was having at the time went away and we didn't address it again. Funny you bring it up now because I have been researching this and wonder the same thing as you, I think I'm going to ask my doctor, about any known connections. & nbsp; -- Sent from my Palm Pixi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 A few years ago I had a blood test done that came back positive for celiac disease, I believe is it antibody tests that show the risk for celiac, since that was positive he ordered a biopsy of the small intestine I can't remember the test name but they put me to sleep for it, and tube was put down my thoat. That test was negative so they said I didn't have it, the symptoms I was having at the time went away and we didn't address it again. Funny you bring it up now because I have been researching this and wonder the same thing as you, I think I'm going to ask my doctor, about any known connections. & nbsp; -- Sent from my Palm Pixi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Hi Ewelina, I myself have not been diagnosed with Still’s disease, but my 29 year old daughter has. I have been diagnosed with Celiac disease and they do not think she has it. The one connection to the afflictions that we all seem to suffer with is Auto-Immune Disorders. I’ve heard that where there is one, there can be many auto-immune disorders going on at the same time. I have ’s Disease, Celiac Disease, Ployglandular Autoimmune Disorder, Asthma, Allergies, Fibromyalgia, CFS and more. No allergies that show up to dairy, except I think dairy can be something whether we are allergic or not, sure does seem to affect us anyway. You ask the million dollar question because if it could be answered we might all be cured! Best of luck with the Kineret injections. It has been effective for my daughter, but not all the way because she suffers from fibromyalgia also and probably CFS. Take care, From: ewelinasandulescu Sent: Sunday, March 11, 2012 1:55 PM To: Stillsdisease Subject: celiac disease ? Few people i spoke with (different country, not usa) told me that diet has a lot to do with stills. all of them when they stopped eating gluten, within days noticed that their disease got better. Ive been sensitive to anything with cows milk and eggs for years, within minutes of eating i get postnasal drip, sore throat and if i just keep ignoring it i end up with upper respiratory infection. I never really paid attention if i have the same reaction to food containing gluten. I simply would never connect the two together. Ive had really hard time cutting out eggs and diary, it seems that 98% of food contains those ingredients. Ive had allergy blood tests done but they came out negative, but the nurse who delivered kineret told me that if you actually have allergens in your food for a long time it wont show up positive in your blood work. Would this be really possible that stills is connected with celiac disease? are there any tests to find that out? btw Ive had 5 kineret injections so far,i honestly can say that abdomen injs. hurt less than thighs. thank you for the tip :-) I don't feel like kineret is working yet tho, hopefully soon it will finally kick in. ewelina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Hi Ewelina, I myself have not been diagnosed with Still’s disease, but my 29 year old daughter has. I have been diagnosed with Celiac disease and they do not think she has it. The one connection to the afflictions that we all seem to suffer with is Auto-Immune Disorders. I’ve heard that where there is one, there can be many auto-immune disorders going on at the same time. I have ’s Disease, Celiac Disease, Ployglandular Autoimmune Disorder, Asthma, Allergies, Fibromyalgia, CFS and more. No allergies that show up to dairy, except I think dairy can be something whether we are allergic or not, sure does seem to affect us anyway. You ask the million dollar question because if it could be answered we might all be cured! Best of luck with the Kineret injections. It has been effective for my daughter, but not all the way because she suffers from fibromyalgia also and probably CFS. Take care, From: ewelinasandulescu Sent: Sunday, March 11, 2012 1:55 PM To: Stillsdisease Subject: celiac disease ? Few people i spoke with (different country, not usa) told me that diet has a lot to do with stills. all of them when they stopped eating gluten, within days noticed that their disease got better. Ive been sensitive to anything with cows milk and eggs for years, within minutes of eating i get postnasal drip, sore throat and if i just keep ignoring it i end up with upper respiratory infection. I never really paid attention if i have the same reaction to food containing gluten. I simply would never connect the two together. Ive had really hard time cutting out eggs and diary, it seems that 98% of food contains those ingredients. Ive had allergy blood tests done but they came out negative, but the nurse who delivered kineret told me that if you actually have allergens in your food for a long time it wont show up positive in your blood work. Would this be really possible that stills is connected with celiac disease? are there any tests to find that out? btw Ive had 5 kineret injections so far,i honestly can say that abdomen injs. hurt less than thighs. thank you for the tip :-) I don't feel like kineret is working yet tho, hopefully soon it will finally kick in. ewelina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Hi Ewelina, I myself have not been diagnosed with Still’s disease, but my 29 year old daughter has. I have been diagnosed with Celiac disease and they do not think she has it. The one connection to the afflictions that we all seem to suffer with is Auto-Immune Disorders. I’ve heard that where there is one, there can be many auto-immune disorders going on at the same time. I have ’s Disease, Celiac Disease, Ployglandular Autoimmune Disorder, Asthma, Allergies, Fibromyalgia, CFS and more. No allergies that show up to dairy, except I think dairy can be something whether we are allergic or not, sure does seem to affect us anyway. You ask the million dollar question because if it could be answered we might all be cured! Best of luck with the Kineret injections. It has been effective for my daughter, but not all the way because she suffers from fibromyalgia also and probably CFS. Take care, From: ewelinasandulescu Sent: Sunday, March 11, 2012 1:55 PM To: Stillsdisease Subject: celiac disease ? Few people i spoke with (different country, not usa) told me that diet has a lot to do with stills. all of them when they stopped eating gluten, within days noticed that their disease got better. Ive been sensitive to anything with cows milk and eggs for years, within minutes of eating i get postnasal drip, sore throat and if i just keep ignoring it i end up with upper respiratory infection. I never really paid attention if i have the same reaction to food containing gluten. I simply would never connect the two together. Ive had really hard time cutting out eggs and diary, it seems that 98% of food contains those ingredients. Ive had allergy blood tests done but they came out negative, but the nurse who delivered kineret told me that if you actually have allergens in your food for a long time it wont show up positive in your blood work. Would this be really possible that stills is connected with celiac disease? are there any tests to find that out? btw Ive had 5 kineret injections so far,i honestly can say that abdomen injs. hurt less than thighs. thank you for the tip :-) I don't feel like kineret is working yet tho, hopefully soon it will finally kick in. ewelina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 I don't know very much about celiac's myself, but I do have a friend who has it and a friend who's daughter has it. I also have an aquaintance who's son has it. The aquaintance has many children and does not take care of the child the way she should...MAKES ME SO DANGED ANGRY...therefore, he has complications, mostly bowel control problems and pain. The kiddo with it also has EXTREME GERD to the point of almost causing death when she was an infant, so her problems are more than just celiac's, but she suffered mysteriously for a long time before they finally decided what was wrong with her. They thought it was all from her GERD because it was so extreme. She has no symptoms even remotely close to Stills, never has. Neither does the friend who has it. Neither of them have ever had any arthritic-type symptoms. I have never heard of a Celiac/Stills connection like I have a connection between Stills and other illnesses. For example, many of us with Stills seem to suffer Fybro, Hashimotos, etc. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 I don't know very much about celiac's myself, but I do have a friend who has it and a friend who's daughter has it. I also have an aquaintance who's son has it. The aquaintance has many children and does not take care of the child the way she should...MAKES ME SO DANGED ANGRY...therefore, he has complications, mostly bowel control problems and pain. The kiddo with it also has EXTREME GERD to the point of almost causing death when she was an infant, so her problems are more than just celiac's, but she suffered mysteriously for a long time before they finally decided what was wrong with her. They thought it was all from her GERD because it was so extreme. She has no symptoms even remotely close to Stills, never has. Neither does the friend who has it. Neither of them have ever had any arthritic-type symptoms. I have never heard of a Celiac/Stills connection like I have a connection between Stills and other illnesses. For example, many of us with Stills seem to suffer Fybro, Hashimotos, etc. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Ewelina, My thoughts are that if it were as simple as one thing or another then we would have figured it out by now. I've never had an allergy to any foods however do have an allergy to the sun, did have mono and only childhood chickenpox. But as I say. With the research that has been done and visiting with many, I think that some that get better with certain diets or supplements may just be a coincidence but I'm so happy for them whatever works. -- celiac disease ? Few people i spoke with (different country, not usa) told me that diet has a lot to do with stills. all of them when they stopped eating gluten, within days noticed that their disease got better. Would this be really possible that stills is connected with celiac disease? are there any tests to find that out? I don't feel like kineret is working yet tho, hopefully soon it will finally kick in. ewelina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Ewelina, My thoughts are that if it were as simple as one thing or another then we would have figured it out by now. I've never had an allergy to any foods however do have an allergy to the sun, did have mono and only childhood chickenpox. But as I say. With the research that has been done and visiting with many, I think that some that get better with certain diets or supplements may just be a coincidence but I'm so happy for them whatever works. -- celiac disease ? Few people i spoke with (different country, not usa) told me that diet has a lot to do with stills. all of them when they stopped eating gluten, within days noticed that their disease got better. Would this be really possible that stills is connected with celiac disease? are there any tests to find that out? I don't feel like kineret is working yet tho, hopefully soon it will finally kick in. ewelina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Ewelina, My thoughts are that if it were as simple as one thing or another then we would have figured it out by now. I've never had an allergy to any foods however do have an allergy to the sun, did have mono and only childhood chickenpox. But as I say. With the research that has been done and visiting with many, I think that some that get better with certain diets or supplements may just be a coincidence but I'm so happy for them whatever works. -- celiac disease ? Few people i spoke with (different country, not usa) told me that diet has a lot to do with stills. all of them when they stopped eating gluten, within days noticed that their disease got better. Would this be really possible that stills is connected with celiac disease? are there any tests to find that out? I don't feel like kineret is working yet tho, hopefully soon it will finally kick in. ewelina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Re Celiac and Stills. I was diagnosed with Stills, Celiac, and Diabetes all within 6 mo. My immune system crashed. Coincidence???? Cannot guess and will never know. Heidi From: April Sent: Sunday, March 11, 2012 4:24 PM To: Stillsdisease Subject: Re: celiac disease ? I don't know very much about celiac's myself, but I do have a friend who has it and a friend who's daughter has it. I also have an aquaintance who's son has it. The aquaintance has many children and does not take Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Re Celiac and Stills. I was diagnosed with Stills, Celiac, and Diabetes all within 6 mo. My immune system crashed. Coincidence???? Cannot guess and will never know. Heidi From: April Sent: Sunday, March 11, 2012 4:24 PM To: Stillsdisease Subject: Re: celiac disease ? I don't know very much about celiac's myself, but I do have a friend who has it and a friend who's daughter has it. I also have an aquaintance who's son has it. The aquaintance has many children and does not take Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2012 Report Share Posted March 12, 2012 Hi everyone, I have come across a similar theory in a couple of books I read within the last year. I agree with that this is speculative, and science has not proven the idea. And I want to be clear that when I repeat what the books say, I am *not* saying I believe the theory or want others to believe it. My own attitude is something like this: I think this effect might be true, and either science has not yet done the right experiments to isolate the effect (if it really exists), or it might be too slight to show up in the experiments that have been done. The books are: " The China Study " and " The Lupus Recovery Diet. " I don't remember the names of the authors at the moment, but Google would know. The Lupus Recovery Diet proposes the theory that lupus, and maybe some other autoimmune diseases, are largely allergic responses to certain foods (the author thinks its mostly animal-based foods, and also wheat gluten, that are largely responsible). She herself has lupus, and thinks that she caused herself to get much better by doing a medically-supervised fast (I think about 7 days), then after that avoiding all the foods just mentioned. She stresses throughout the book that one should *not* try fasting without medical supervision, and gives contact information for a few places where doctors regularly supervise fasting. The China Study has one chapter on autoimmune diseases. This book is much more science-based than the other one, but its recommendations are also speculative, not established science. And the chapter on autoimmune diseases is, by the author's own description, more speculative than the others. But he also thinks there is some dietary connection to autoimmune diseases. He's a nutrition researcher at Cornell, so at least he is qualified to discuss some of the issues that might be involved. My personal opinion is that there may be something to these ideas, but I certainly do not know, and it seems to me that the science just has not been done to show whether they are true or not. I'll add one personal anecdote. When I read the China Study last year, I was eating a vegetarian, but not vegan, diet. I was eating dairy products every day. And I was getting red spots breaking out on my skin each day, in irregular patterns. After reading the book, I decided to eliminate dairy products to see what would happen (if anything). It was like turning off a light switch; the spots disappeared completely (for a while), and stayed gone for several months. They came back last summer when my stress levels went up (changing jobs and continents at the same time). So I might take this as evidence in favor of the hypothesis, but it's not very clear evidence. There are too many things that might have affected when the spots appear. And it's not very clear to me whether the spots are part of Still's, related to it, or something else completely. And finally, I came across a reference to someone recovering from gout in the ancient world just last week. The author thinks the person recovered partly because of studying philosophy, and partly because of eating only every other day. This is in a book by Porphyry, a Greek philosopher living in Italy in the 3rd century AD. In his biography of his teacher Plotinus, Porphyry is talking about a Roman senator they knew, Rogatianus: " There was also Rogatianus, a senator, who advanced so far in renunciation of public life that he gave up all his property, dismissed all his servants, and resigned his rank…He would not even keep his own house to live in, but went the round of his friends and acquaintances, dining at one house and sleeping at another (but he only ate every other day). As a result of this renunciation and indifference to the needs of life, though he had been so gouty that he had to be carried in a chair, he regained his health, and, though he had not been able to stretch out his hands, he became able to use them much more easily than professional handicraftsmen. " (This is from " Plotinus: Porphyry on Plotinus and Ennead I " , translated by A.H. Armstrong, in the Loeb Classical Library, Harvard Univ. Press, 1989, pp.27-29.) (Ancient Greek philosophy is what I work on.) I see I've written a lot of words, and the bottom line is I don't know what the truth is. Typical for an academic! But I hope some of us might find this entertaining (I'm intrigued by the story from Porphyry, even if it might be exaggerated or inaccurate – still, it's interesting that someone else thought they noticed the same connection and thought it was worth including in a book…) I hope all of us find peace and relief. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2012 Report Share Posted March 12, 2012 Hi everyone, I have come across a similar theory in a couple of books I read within the last year. I agree with that this is speculative, and science has not proven the idea. And I want to be clear that when I repeat what the books say, I am *not* saying I believe the theory or want others to believe it. My own attitude is something like this: I think this effect might be true, and either science has not yet done the right experiments to isolate the effect (if it really exists), or it might be too slight to show up in the experiments that have been done. The books are: " The China Study " and " The Lupus Recovery Diet. " I don't remember the names of the authors at the moment, but Google would know. The Lupus Recovery Diet proposes the theory that lupus, and maybe some other autoimmune diseases, are largely allergic responses to certain foods (the author thinks its mostly animal-based foods, and also wheat gluten, that are largely responsible). She herself has lupus, and thinks that she caused herself to get much better by doing a medically-supervised fast (I think about 7 days), then after that avoiding all the foods just mentioned. She stresses throughout the book that one should *not* try fasting without medical supervision, and gives contact information for a few places where doctors regularly supervise fasting. The China Study has one chapter on autoimmune diseases. This book is much more science-based than the other one, but its recommendations are also speculative, not established science. And the chapter on autoimmune diseases is, by the author's own description, more speculative than the others. But he also thinks there is some dietary connection to autoimmune diseases. He's a nutrition researcher at Cornell, so at least he is qualified to discuss some of the issues that might be involved. My personal opinion is that there may be something to these ideas, but I certainly do not know, and it seems to me that the science just has not been done to show whether they are true or not. I'll add one personal anecdote. When I read the China Study last year, I was eating a vegetarian, but not vegan, diet. I was eating dairy products every day. And I was getting red spots breaking out on my skin each day, in irregular patterns. After reading the book, I decided to eliminate dairy products to see what would happen (if anything). It was like turning off a light switch; the spots disappeared completely (for a while), and stayed gone for several months. They came back last summer when my stress levels went up (changing jobs and continents at the same time). So I might take this as evidence in favor of the hypothesis, but it's not very clear evidence. There are too many things that might have affected when the spots appear. And it's not very clear to me whether the spots are part of Still's, related to it, or something else completely. And finally, I came across a reference to someone recovering from gout in the ancient world just last week. The author thinks the person recovered partly because of studying philosophy, and partly because of eating only every other day. This is in a book by Porphyry, a Greek philosopher living in Italy in the 3rd century AD. In his biography of his teacher Plotinus, Porphyry is talking about a Roman senator they knew, Rogatianus: " There was also Rogatianus, a senator, who advanced so far in renunciation of public life that he gave up all his property, dismissed all his servants, and resigned his rank…He would not even keep his own house to live in, but went the round of his friends and acquaintances, dining at one house and sleeping at another (but he only ate every other day). As a result of this renunciation and indifference to the needs of life, though he had been so gouty that he had to be carried in a chair, he regained his health, and, though he had not been able to stretch out his hands, he became able to use them much more easily than professional handicraftsmen. " (This is from " Plotinus: Porphyry on Plotinus and Ennead I " , translated by A.H. Armstrong, in the Loeb Classical Library, Harvard Univ. Press, 1989, pp.27-29.) (Ancient Greek philosophy is what I work on.) I see I've written a lot of words, and the bottom line is I don't know what the truth is. Typical for an academic! But I hope some of us might find this entertaining (I'm intrigued by the story from Porphyry, even if it might be exaggerated or inaccurate – still, it's interesting that someone else thought they noticed the same connection and thought it was worth including in a book…) I hope all of us find peace and relief. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2012 Report Share Posted March 12, 2012 Hi everyone, I have come across a similar theory in a couple of books I read within the last year. I agree with that this is speculative, and science has not proven the idea. And I want to be clear that when I repeat what the books say, I am *not* saying I believe the theory or want others to believe it. My own attitude is something like this: I think this effect might be true, and either science has not yet done the right experiments to isolate the effect (if it really exists), or it might be too slight to show up in the experiments that have been done. The books are: " The China Study " and " The Lupus Recovery Diet. " I don't remember the names of the authors at the moment, but Google would know. The Lupus Recovery Diet proposes the theory that lupus, and maybe some other autoimmune diseases, are largely allergic responses to certain foods (the author thinks its mostly animal-based foods, and also wheat gluten, that are largely responsible). She herself has lupus, and thinks that she caused herself to get much better by doing a medically-supervised fast (I think about 7 days), then after that avoiding all the foods just mentioned. She stresses throughout the book that one should *not* try fasting without medical supervision, and gives contact information for a few places where doctors regularly supervise fasting. The China Study has one chapter on autoimmune diseases. This book is much more science-based than the other one, but its recommendations are also speculative, not established science. And the chapter on autoimmune diseases is, by the author's own description, more speculative than the others. But he also thinks there is some dietary connection to autoimmune diseases. He's a nutrition researcher at Cornell, so at least he is qualified to discuss some of the issues that might be involved. My personal opinion is that there may be something to these ideas, but I certainly do not know, and it seems to me that the science just has not been done to show whether they are true or not. I'll add one personal anecdote. When I read the China Study last year, I was eating a vegetarian, but not vegan, diet. I was eating dairy products every day. And I was getting red spots breaking out on my skin each day, in irregular patterns. After reading the book, I decided to eliminate dairy products to see what would happen (if anything). It was like turning off a light switch; the spots disappeared completely (for a while), and stayed gone for several months. They came back last summer when my stress levels went up (changing jobs and continents at the same time). So I might take this as evidence in favor of the hypothesis, but it's not very clear evidence. There are too many things that might have affected when the spots appear. And it's not very clear to me whether the spots are part of Still's, related to it, or something else completely. And finally, I came across a reference to someone recovering from gout in the ancient world just last week. The author thinks the person recovered partly because of studying philosophy, and partly because of eating only every other day. This is in a book by Porphyry, a Greek philosopher living in Italy in the 3rd century AD. In his biography of his teacher Plotinus, Porphyry is talking about a Roman senator they knew, Rogatianus: " There was also Rogatianus, a senator, who advanced so far in renunciation of public life that he gave up all his property, dismissed all his servants, and resigned his rank…He would not even keep his own house to live in, but went the round of his friends and acquaintances, dining at one house and sleeping at another (but he only ate every other day). As a result of this renunciation and indifference to the needs of life, though he had been so gouty that he had to be carried in a chair, he regained his health, and, though he had not been able to stretch out his hands, he became able to use them much more easily than professional handicraftsmen. " (This is from " Plotinus: Porphyry on Plotinus and Ennead I " , translated by A.H. Armstrong, in the Loeb Classical Library, Harvard Univ. Press, 1989, pp.27-29.) (Ancient Greek philosophy is what I work on.) I see I've written a lot of words, and the bottom line is I don't know what the truth is. Typical for an academic! But I hope some of us might find this entertaining (I'm intrigued by the story from Porphyry, even if it might be exaggerated or inaccurate – still, it's interesting that someone else thought they noticed the same connection and thought it was worth including in a book…) I hope all of us find peace and relief. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 That's one of the best posts I've ever seen in this group. Thanks . Terry Schooler Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 That's one of the best posts I've ever seen in this group. Thanks . Terry Schooler Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
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