Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Hi, I found this at the Thoughtful House Centre for Children discussion group and thought it would be of interest to you all. Regards Glynis mam to Jasmine 7 yrs Diagnosed with Kabuki Syndrome and NG tube fed Re: IBD and allergy >Dear people on the forum (especially mothers who struggle beetwen diet and gastroenterologists for their chindren) I would like to tell you a story. Excuse me if it is too long and my English is not excellent. I am an italian MD, specialized in pathology and immunology. I work mostly in a research laboratory and I have a daughter of 16 with UC. She was diagnosed when she was 9 and has been treated with asacol, steroids and azathioprin (an immune- suppressant). Her disease has always been more or less active. This year she has been unwell (with cramps, diarhea with blood and mucus) so. after a colonoscopy that evidenced a worsening of macroscopic lesions in her descendent and part of the transverse colon, we went to see a couple of specialists who agreed that her disease was now resistant or dependent to steroids and that she had to have infliximab infusions starting in May, after a school trip. If infliximab did not work we had to discuss surgery. Infliximab is a relatively new drug that goes against one of the molecules that cause inflammation, the short and -more worrying-long side effects are not known. At the end of her school trip we went to England to see some relatives and she had a terrible gastroenteritis, (had a beer and some fish and chips).The violence of her symptoms scared everyone, we were taking her to an emergency hospital, but then fortunately after a night and a day of vomiting, fever and severe diarhrrea (yellow water) she got better and I started the introductory diet (I had the BTVC book with me, in the hope that I could convince her to read and discuss it with me, so that she would not feel forced into it). After 4 days on the diet the D and cramps disappeared. She is now accepting the diet (slowly), feels a bit weak for the lack of sugars (would not eat the new type of bread or all the allowed fruit and vegetables and is often in a bad mood because she feels different from her friends because she cannot have pizza, ice cream and pasta-it seems to me that all teen agers do is eating). We slowly reduced the steroids and she is getting a lot more sleep (she has always been a very light sleeper), her stools are normal, she goes without urgency 2 or 3 times a day, she only has some bloating in the evenings, no pain….. I do not have any support from other italian SCDers, and I would like to help other IBD sufferers as much as Elaine's book is helping me and my daughter. My daughter had a story of food intollerances, eczema, hypersensitivity and diahrrea since she was a baby, but any gastroenterologists (both in Italy or in England) or pediatricians ever wanted to know. Once she had tests for food allergies and was negative and a pediatrician looked at me as if I was a very ignorant martian when I said that it seemed that milk or other foods affected her in a quantitative way, because it was against the immunology dogmas (protein-antigen=allergic reaction). I do believe that every patient is different and that scientific dogmas have damaged many people so far. They infact narrow minds and close doctors eyes. As an immunologist I have been studying IBD and I am going to correlate my daughter's tests with other patients' tests, as I am convinced that the diet helps to change the cytokine asset and improves the immune system as well as healing the mucosa. Regarding asthma and CD I cannot say if there is a connection but I am sure there is a connection beetwen UC and allergies. In a chronic inflammation such as asthma (in the lungs) and colitis (in the colon) the cellular infiltrates are similar: monocytes, Th2 lymphocytes and during acute phases neutrophils that damage furtherly the substrates (mucosa or lungs) were they are. In Chron disease (at least in the reported cases) there is a predominance of Th1 instead of Th2 lymphocytes, but the initial cells (monocytes) are the same. The monocytes, present in all tissues and especially in mucosas that interact with external antigens (such as foods, bacteria, inhaling substances) get active and start secreting IL23. This is a mediator that starts selecting " aggressive " lymphocytes called Th17. In " normal " conditions the monocytes secrete IL12 instead of IL23 that selects regulatory T cells that trigger tollerance to food or bacterial antigens. I know of many cases of Chron disease in young people that are misdiagnosed because some UCs happen in patches and cause reactive terminal ileites (these signs address the diagnosis to Chron's, but they clinically behave like ulcerative rectum colitis). I am sure that both Chron and UC benefit enourmously by SCD. I hope this story will help and convince you all to follow the diet. With many thanks for your attention Stefania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 --- Oops, so sorry. This was from the SCDUK discussion group. In pecanbread , " Glynis Steele " wrote: > > Hi, I found this at the Thoughtful House Centre for Children > discussion group and thought it would be of interest to you all. > > Regards Glynis mam to Jasmine 7 yrs > Diagnosed with Kabuki Syndrome > and NG tube fed > > Re: IBD and allergy > > >Dear people on the forum (especially mothers who struggle beetwen > diet and > gastroenterologists for their chindren) > I would like to tell you a story. Excuse me if it is too long and my > English is > not excellent. > I am an italian MD, specialized in pathology and immunology. I work > mostly in a > research > laboratory and I have a daughter of 16 with UC. She was diagnosed > when she was 9 > and > has been treated with asacol, steroids and azathioprin (an immune- > suppressant). > Her > disease has always been more or less active. This year she has been > unwell (with > cramps, > diarhea with blood and mucus) so. after a colonoscopy that evidenced > a worsening > of > macroscopic lesions in her descendent and part of the transverse > colon, we went > to see a > couple of specialists who agreed that her disease was now resistant > or dependent > to > steroids and that she had to have infliximab infusions starting in > May, after a > school trip. If > infliximab did not work we had to discuss surgery. Infliximab is a > relatively > new drug that > goes against one of the molecules that cause inflammation, the short > and -more > worrying-long side effects are not known. At the end of her school > trip we went > to England > to see some relatives and she had a terrible gastroenteritis, (had a > beer and > some fish and > chips).The violence of her symptoms scared everyone, we were taking > her to an > emergency > hospital, but then fortunately after a night and a day of vomiting, > fever and > severe > diarhrrea (yellow water) she got better and I started the > introductory diet (I > had the BTVC > book with me, in the hope that I could convince her to read and > discuss it with > me, so that > she would not feel forced into it). After 4 days on the diet the D > and cramps > disappeared. > She is now accepting the diet (slowly), feels a bit weak for the lack > of sugars > (would not eat > the new type of bread or all the allowed fruit and vegetables and is > often in a > bad mood > because she feels different from her friends because she cannot have > pizza, ice > cream and > pasta-it seems to me that all teen agers do is eating). We slowly > reduced the > steroids and > she is getting a lot more sleep (she has always been a very light > sleeper), her > stools are > normal, she goes without urgency 2 or 3 times a day, she only has > some bloating > in the > evenings, no pain….. > I do not have any support from other italian SCDers, and I would like > to help > other IBD > sufferers as much as Elaine's book is helping me and my daughter. > My daughter had a story of food intollerances, eczema, > hypersensitivity and > diahrrea since > she was a baby, but any gastroenterologists (both in Italy or in > England) or > pediatricians > ever wanted to know. Once she had tests for food allergies and was > negative and > a > pediatrician looked at me as if I was a very ignorant martian when I > said that > it seemed > that milk or other foods affected her in a quantitative way, because > it was > against the > immunology dogmas (protein-antigen=allergic reaction). I do believe > that every > patient is > different and that scientific dogmas have damaged many people so far. > They > infact narrow > minds and close doctors eyes. > As an immunologist I have been studying IBD and I am going to > correlate my > daughter's > tests with other patients' tests, as I am convinced that the diet > helps to > change the > cytokine asset and improves the immune system as well as healing the > mucosa. > Regarding asthma and CD I cannot say if there is a connection but I > am sure > there is a > connection beetwen UC and allergies. In a chronic inflammation such > as asthma > (in the > lungs) and colitis (in the colon) the cellular infiltrates are > similar: > monocytes, Th2 > lymphocytes and during acute phases neutrophils that damage furtherly > the > substrates > (mucosa or lungs) were they are. In Chron disease (at least in the > reported > cases) there is a > predominance of Th1 instead of Th2 lymphocytes, but the initial cells > (monocytes) are the > same. The monocytes, present in all tissues and especially in mucosas > that > interact with > external antigens (such as foods, bacteria, inhaling substances) get > active and > start > secreting IL23. This is a mediator that starts selecting " aggressive " > lymphocytes called > Th17. In " normal " conditions the monocytes secrete IL12 instead of > IL23 that > selects > regulatory T cells that trigger tollerance to food or bacterial > antigens. > I know of many cases of Chron disease in young people that are > misdiagnosed > because > some UCs happen in patches and cause reactive terminal ileites (these > signs > address the > diagnosis to Chron's, but they clinically behave like ulcerative > rectum > colitis). I am sure > that both Chron and UC benefit enourmously by SCD. I hope this story > will help > and > convince you all to follow the diet. > With many thanks for your attention > Stefania > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Glynis, Thank you for sending this! You may invite her to join our list or the other SCD lists that appear on the official SCD websites. Ask her to write to Grammy Bauer to find SCD friendsin Italy: grammy_bauer@... Mimi > Hi, I found this at the Thoughtful House Centre for Children > discussion group and thought it would be of interest to you all. > > Regards Glynis mam to Jasmine 7 yrs > Diagnosed with Kabuki Syndrome > and NG tube fed > > Re: IBD and allergy > > >Dear people on the forum (especially mothers who struggle beetwen > diet and > gastroenterologists for their chindren) > I would like to tell you a story. Excuse me if it is too long and my > English is > not excellent. > I am an italian MD, specialized in pathology and immunology. I work > mostly in a > research > laboratory and I have a daughter of 16 with UC. She was diagnosed > when she was 9 > and > has been treated with asacol, steroids and azathioprin (an immune- > suppressant). > Her > disease has always been more or less active. This year she has been > unwell (with > cramps, > diarhea with blood and mucus) so. after a colonoscopy that evidenced > a worsening > of > macroscopic lesions in her descendent and part of the transverse > colon, we went > to see a > couple of specialists who agreed that her disease was now resistant > or dependent > to > steroids and that she had to have infliximab infusions starting in > May, after a > school trip. If > infliximab did not work we had to discuss surgery. Infliximab is a > relatively > new drug that > goes against one of the molecules that cause inflammation, the short > and -more > worrying-long side effects are not known. At the end of her school > trip we went > to England > to see some relatives and she had a terrible gastroenteritis, (had a > beer and > some fish and > chips).The violence of her symptoms scared everyone, we were taking > her to an > emergency > hospital, but then fortunately after a night and a day of vomiting, > fever and > severe > diarhrrea (yellow water) she got better and I started the > introductory diet (I > had the BTVC > book with me, in the hope that I could convince her to read and > discuss it with > me, so that > she would not feel forced into it). After 4 days on the diet the D > and cramps > disappeared. > She is now accepting the diet (slowly), feels a bit weak for the lack > of sugars > (would not eat > the new type of bread or all the allowed fruit and vegetables and is > often in a > bad mood > because she feels different from her friends because she cannot have > pizza, ice > cream and > pasta-it seems to me that all teen agers do is eating). We slowly > reduced the > steroids and > she is getting a lot more sleep (she has always been a very light > sleeper), her > stools are > normal, she goes without urgency 2 or 3 times a day, she only has > some bloating > in the > evenings, no pain….. > I do not have any support from other italian SCDers, and I would like > to help > other IBD > sufferers as much as Elaine's book is helping me and my daughter. > My daughter had a story of food intollerances, eczema, > hypersensitivity and > diahrrea since > she was a baby, but any gastroenterologists (both in Italy or in > England) or > pediatricians > ever wanted to know. Once she had tests for food allergies and was > negative and > a > pediatrician looked at me as if I was a very ignorant martian when I > said that > it seemed > that milk or other foods affected her in a quantitative way, because > it was > against the > immunology dogmas (protein-antigen=allergic reaction). I do believe > that every > patient is > different and that scientific dogmas have damaged many people so far. > They > infact narrow > minds and close doctors eyes. > As an immunologist I have been studying IBD and I am going to > correlate my > daughter's > tests with other patients' tests, as I am convinced that the diet > helps to > change the > cytokine asset and improves the immune system as well as healing the > mucosa. > Regarding asthma and CD I cannot say if there is a connection but I > am sure > there is a > connection beetwen UC and allergies. In a chronic inflammation such > as asthma > (in the > lungs) and colitis (in the colon) the cellular infiltrates are > similar: > monocytes, Th2 > lymphocytes and during acute phases neutrophils that damage furtherly > the > substrates > (mucosa or lungs) were they are. In Chron disease (at least in the > reported > cases) there is a > predominance of Th1 instead of Th2 lymphocytes, but the initial cells > (monocytes) are the > same. The monocytes, present in all tissues and especially in mucosas > that > interact with > external antigens (such as foods, bacteria, inhaling substances) get > active and > start > secreting IL23. This is a mediator that starts selecting " aggressive " > lymphocytes called > Th17. In " normal " conditions the monocytes secrete IL12 instead of > IL23 that > selects > regulatory T cells that trigger tollerance to food or bacterial > antigens. > I know of many cases of Chron disease in young people that are > misdiagnosed > because > some UCs happen in patches and cause reactive terminal ileites (these > signs > address the > diagnosis to Chron's, but they clinically behave like ulcerative > rectum > colitis). I am sure > that both Chron and UC benefit enourmously by SCD. I hope this story > will help > and > convince you all to follow the diet. > With many thanks for your attention > Stefania > > > > Quote Link to comment Share on other sites More sharing options...
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