Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Sally, Thanks for the update—good news all around! Bummer on the lo mein. It’s a favorite for my ds also, but I make it at home with rice pasta now. Never as good as the restaurant, but adequate. I cannot seem to make a decent Pad Thai at home, but have hopes for getting that gf at a good thai place. It uses rice noodles anyway and at least some of the prepared pad thai sauces are gf. Might be a good alternative for Mattie, too. I can’t help you with the growth question—my 13 year old ds is 6 ft tall—failure to thrive is not the issue around here! I haven’t tried any bread of any kind since going gf—I’m waiting for my new mixer to arrive! When I even pick up an Ener-g loaf, and it feels so dense and heavy—I just can’t buy it. I used to make all of our bread using a food processor, but burned that engine out after a few years. I look forward to hearing how you progress! Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of sallyjd2001 Sent: Sunday, January 22, 2006 9:01 PM To: SillyYaks Subject: Hi and Thanks Hi, This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just wanted to say thanks to all who emailed and responded to my questions re: what foods to buy first. And... great suggestion from whomever wrote and said try not to replace his favorites with faux gluten free. We are trying so many new foods with him (Mattie has lots of sensory issues with food so I was so hesitant to do this) and so far so good. Still haven't found a good substitute for white bread but I haven't order the kinnikinick? bread yet or made my own, just tryed whole foods, and ener-g. My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF. Oh well, live and learn. Mattie has never had any intestinal reaction to gluten that we know of so we will just be careful next time. I have a few questions of course. For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come from very tall families both of us have brothers that are 6'6 " so we have been trying to figure this out for awhile now. Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic? Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. We have 3 kids... our 4 1/2 year old was tested and was negative, our 9 month old won't be tested until she is at least 2. TMI, right??? Anyway... things are going well, just feel like I have to plan my meals so much more in advance but can honestly say he is handling it as best as we could expect. Thanks again for all the great ideas and advice, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Sally, Thanks for the update—good news all around! Bummer on the lo mein. It’s a favorite for my ds also, but I make it at home with rice pasta now. Never as good as the restaurant, but adequate. I cannot seem to make a decent Pad Thai at home, but have hopes for getting that gf at a good thai place. It uses rice noodles anyway and at least some of the prepared pad thai sauces are gf. Might be a good alternative for Mattie, too. I can’t help you with the growth question—my 13 year old ds is 6 ft tall—failure to thrive is not the issue around here! I haven’t tried any bread of any kind since going gf—I’m waiting for my new mixer to arrive! When I even pick up an Ener-g loaf, and it feels so dense and heavy—I just can’t buy it. I used to make all of our bread using a food processor, but burned that engine out after a few years. I look forward to hearing how you progress! Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of sallyjd2001 Sent: Sunday, January 22, 2006 9:01 PM To: SillyYaks Subject: Hi and Thanks Hi, This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just wanted to say thanks to all who emailed and responded to my questions re: what foods to buy first. And... great suggestion from whomever wrote and said try not to replace his favorites with faux gluten free. We are trying so many new foods with him (Mattie has lots of sensory issues with food so I was so hesitant to do this) and so far so good. Still haven't found a good substitute for white bread but I haven't order the kinnikinick? bread yet or made my own, just tryed whole foods, and ener-g. My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF. Oh well, live and learn. Mattie has never had any intestinal reaction to gluten that we know of so we will just be careful next time. I have a few questions of course. For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come from very tall families both of us have brothers that are 6'6 " so we have been trying to figure this out for awhile now. Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic? Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. We have 3 kids... our 4 1/2 year old was tested and was negative, our 9 month old won't be tested until she is at least 2. TMI, right??? Anyway... things are going well, just feel like I have to plan my meals so much more in advance but can honestly say he is handling it as best as we could expect. Thanks again for all the great ideas and advice, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Sally, Thanks for the update—good news all around! Bummer on the lo mein. It’s a favorite for my ds also, but I make it at home with rice pasta now. Never as good as the restaurant, but adequate. I cannot seem to make a decent Pad Thai at home, but have hopes for getting that gf at a good thai place. It uses rice noodles anyway and at least some of the prepared pad thai sauces are gf. Might be a good alternative for Mattie, too. I can’t help you with the growth question—my 13 year old ds is 6 ft tall—failure to thrive is not the issue around here! I haven’t tried any bread of any kind since going gf—I’m waiting for my new mixer to arrive! When I even pick up an Ener-g loaf, and it feels so dense and heavy—I just can’t buy it. I used to make all of our bread using a food processor, but burned that engine out after a few years. I look forward to hearing how you progress! Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of sallyjd2001 Sent: Sunday, January 22, 2006 9:01 PM To: SillyYaks Subject: Hi and Thanks Hi, This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just wanted to say thanks to all who emailed and responded to my questions re: what foods to buy first. And... great suggestion from whomever wrote and said try not to replace his favorites with faux gluten free. We are trying so many new foods with him (Mattie has lots of sensory issues with food so I was so hesitant to do this) and so far so good. Still haven't found a good substitute for white bread but I haven't order the kinnikinick? bread yet or made my own, just tryed whole foods, and ener-g. My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF. Oh well, live and learn. Mattie has never had any intestinal reaction to gluten that we know of so we will just be careful next time. I have a few questions of course. For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come from very tall families both of us have brothers that are 6'6 " so we have been trying to figure this out for awhile now. Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic? Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. We have 3 kids... our 4 1/2 year old was tested and was negative, our 9 month old won't be tested until she is at least 2. TMI, right??? Anyway... things are going well, just feel like I have to plan my meals so much more in advance but can honestly say he is handling it as best as we could expect. Thanks again for all the great ideas and advice, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 " For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. " My 8 1/2 year old is also really small. He just weighs 48 pounds and is 46 inches tall. He gained one inch on his trial G/F diet since November. He also really has no symptoms of Celiac, but little sister is a Celiac. He is allowed to cheat sometimes on his diet since he is asymptomatic, however I am keeping an eye on his behavior since cheating. He started with some garlic bread last night and an In & Out burger today. No behavioral or physical symptoms in the least. We're not sure he is Celiac, but since he grew and inch in just about 10 weeks, we're considering he might be. He will be back to a complete GF diet starting tomorrow for several more months. Then after 6 months they will draw some blood. Our GI said it was no use poking him since he grew the inch--something he hardly ever does! He's the size of an average 5 year old--that is tiny! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is " failure to thrive " . She is almost 13, weights only 58 pounds, and is only 4 feet 5 inches. She is also ADHD, and it was thanks to the dr. prescribing her ritalin that we ended up with her diagnosis. He refused to give her more ritalin until we figured out that it wasnt the cause of her delayed growth. So off we went for a series of blood tests. You can guess the rest....I am being tested tommorrow. I am very glad to hear that quick growth is possible on the diet, since the doctors tell me that once she starts menstruating, she will not grow any taller! This definitley generated a sense of urgency. My biggest concern is that since she is asymptomatic in terms of stomach discomfort, etc., she is less motivated to stay on the diet, but she is motivated to get taller, so we'll see! So glad this board exists, as I have been lurking for 4 days now and picked up lots of good information.... Eileen --- & Mike wrote: > > " For those of you that have children with cd... did > your child have growth > issues? That is Mattie's only symptom of cd that we > know of.. his poor > growth. He is 6 1/2 and weighs 42 lbs and is 43 > inches tall. Little guy. " > > My 8 1/2 year old is also really small. He just > weighs 48 pounds and is 46 > inches tall. He gained one inch on his trial G/F > diet since November. He > also really has no symptoms of Celiac, but little > sister is a Celiac. He is > allowed to cheat sometimes on his diet since he is > asymptomatic, however I > am keeping an eye on his behavior since cheating. He > started with some > garlic bread last night and an In & Out burger > today. No behavioral or > physical symptoms in the least. We're not sure he is > Celiac, but since he > grew and inch in just about 10 weeks, we're > considering he might be. He > will be back to a complete GF diet starting tomorrow > for several more > months. Then after 6 months they will draw some > blood. Our GI said it was no > use poking him since he grew the inch--something he > hardly ever does! He's > the size of an average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is " failure to thrive " . She is almost 13, weights only 58 pounds, and is only 4 feet 5 inches. She is also ADHD, and it was thanks to the dr. prescribing her ritalin that we ended up with her diagnosis. He refused to give her more ritalin until we figured out that it wasnt the cause of her delayed growth. So off we went for a series of blood tests. You can guess the rest....I am being tested tommorrow. I am very glad to hear that quick growth is possible on the diet, since the doctors tell me that once she starts menstruating, she will not grow any taller! This definitley generated a sense of urgency. My biggest concern is that since she is asymptomatic in terms of stomach discomfort, etc., she is less motivated to stay on the diet, but she is motivated to get taller, so we'll see! So glad this board exists, as I have been lurking for 4 days now and picked up lots of good information.... Eileen --- & Mike wrote: > > " For those of you that have children with cd... did > your child have growth > issues? That is Mattie's only symptom of cd that we > know of.. his poor > growth. He is 6 1/2 and weighs 42 lbs and is 43 > inches tall. Little guy. " > > My 8 1/2 year old is also really small. He just > weighs 48 pounds and is 46 > inches tall. He gained one inch on his trial G/F > diet since November. He > also really has no symptoms of Celiac, but little > sister is a Celiac. He is > allowed to cheat sometimes on his diet since he is > asymptomatic, however I > am keeping an eye on his behavior since cheating. He > started with some > garlic bread last night and an In & Out burger > today. No behavioral or > physical symptoms in the least. We're not sure he is > Celiac, but since he > grew and inch in just about 10 weeks, we're > considering he might be. He > will be back to a complete GF diet starting tomorrow > for several more > months. Then after 6 months they will draw some > blood. Our GI said it was no > use poking him since he grew the inch--something he > hardly ever does! He's > the size of an average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is " failure to thrive " . She is almost 13, weights only 58 pounds, and is only 4 feet 5 inches. She is also ADHD, and it was thanks to the dr. prescribing her ritalin that we ended up with her diagnosis. He refused to give her more ritalin until we figured out that it wasnt the cause of her delayed growth. So off we went for a series of blood tests. You can guess the rest....I am being tested tommorrow. I am very glad to hear that quick growth is possible on the diet, since the doctors tell me that once she starts menstruating, she will not grow any taller! This definitley generated a sense of urgency. My biggest concern is that since she is asymptomatic in terms of stomach discomfort, etc., she is less motivated to stay on the diet, but she is motivated to get taller, so we'll see! So glad this board exists, as I have been lurking for 4 days now and picked up lots of good information.... Eileen --- & Mike wrote: > > " For those of you that have children with cd... did > your child have growth > issues? That is Mattie's only symptom of cd that we > know of.. his poor > growth. He is 6 1/2 and weighs 42 lbs and is 43 > inches tall. Little guy. " > > My 8 1/2 year old is also really small. He just > weighs 48 pounds and is 46 > inches tall. He gained one inch on his trial G/F > diet since November. He > also really has no symptoms of Celiac, but little > sister is a Celiac. He is > allowed to cheat sometimes on his diet since he is > asymptomatic, however I > am keeping an eye on his behavior since cheating. He > started with some > garlic bread last night and an In & Out burger > today. No behavioral or > physical symptoms in the least. We're not sure he is > Celiac, but since he > grew and inch in just about 10 weeks, we're > considering he might be. He > will be back to a complete GF diet starting tomorrow > for several more > months. Then after 6 months they will draw some > blood. Our GI said it was no > use poking him since he grew the inch--something he > hardly ever does! He's > the size of an average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 >>> My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF.<<< At the chinese place that we go to, they have Mei Fun. It is rice noodles with vegetables and then your choice of chicken, etc. The person at the counter said they only put salt in this dish as far as seasonings go. Our CD daughter ate them and loved them and has never shown a reaction to the dish. (Although, she does not show outward symptoms very easily.) Also, this same place has a " Special Diet and Health " section of there menu. These items are only prepared with garlic, ginger, green onions, and red wine. Then it has different options of chicken, just veggies, shrimp, etc. This is what my girls choose just about every time we get take-out from this place. So, look into those 2 options for your CD child. You may need to look around at different chinese take-out places to find one that has these items. And don't forget to ask as many questions as possible before-hand to make sure they are in fact GF. >>> I have a few questions of course. For those of you that have children with cd... did your child have growth issues? ... Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic?<<< Our CD daughter (now 5.5, diagnosed at 20months) was around the 90-95th percentile for weight and height up until she started showing symptoms at around 18months. Then she fell quickly down the charts, especially with weight. After being diagnosed, she fairly quickly gained back the weight and began to grow again. Her height took a little longer to get back to what was normal for her, but still fairly quickly. Recommended by our ped GI, we gave her Pediasure after diagnosis and this quickly added enough calories and nutrition to bulk her up. Actually, a few months after diagnosis was the only time she has ever had " chub " . So, all that being said, I don't think 6 months is too short amount of time to see significant change in your CD child's growth. >>> Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. <<< My understanding is that CD is only genetic...so someone in the family line must have CD. However, my husband and I have both been tested are were both negative. No one else in our extended families have felt " the need " to get tested so we have no idea what side carries this gene. Hope all this helps. I still remember how overwhelming it felt to have a child newly diagnosed with CD. So I want to assure you that it does get easier, much easier! We have been doing the GF thing now for almost 4 yrs and it is like second nature now. Sure there are still times of extra hassle or frustration but all-in-all, we have 2 healthy kiddos and could not feel luckier!! Blessings, Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 >>> My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF.<<< At the chinese place that we go to, they have Mei Fun. It is rice noodles with vegetables and then your choice of chicken, etc. The person at the counter said they only put salt in this dish as far as seasonings go. Our CD daughter ate them and loved them and has never shown a reaction to the dish. (Although, she does not show outward symptoms very easily.) Also, this same place has a " Special Diet and Health " section of there menu. These items are only prepared with garlic, ginger, green onions, and red wine. Then it has different options of chicken, just veggies, shrimp, etc. This is what my girls choose just about every time we get take-out from this place. So, look into those 2 options for your CD child. You may need to look around at different chinese take-out places to find one that has these items. And don't forget to ask as many questions as possible before-hand to make sure they are in fact GF. >>> I have a few questions of course. For those of you that have children with cd... did your child have growth issues? ... Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic?<<< Our CD daughter (now 5.5, diagnosed at 20months) was around the 90-95th percentile for weight and height up until she started showing symptoms at around 18months. Then she fell quickly down the charts, especially with weight. After being diagnosed, she fairly quickly gained back the weight and began to grow again. Her height took a little longer to get back to what was normal for her, but still fairly quickly. Recommended by our ped GI, we gave her Pediasure after diagnosis and this quickly added enough calories and nutrition to bulk her up. Actually, a few months after diagnosis was the only time she has ever had " chub " . So, all that being said, I don't think 6 months is too short amount of time to see significant change in your CD child's growth. >>> Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. <<< My understanding is that CD is only genetic...so someone in the family line must have CD. However, my husband and I have both been tested are were both negative. No one else in our extended families have felt " the need " to get tested so we have no idea what side carries this gene. Hope all this helps. I still remember how overwhelming it felt to have a child newly diagnosed with CD. So I want to assure you that it does get easier, much easier! We have been doing the GF thing now for almost 4 yrs and it is like second nature now. Sure there are still times of extra hassle or frustration but all-in-all, we have 2 healthy kiddos and could not feel luckier!! Blessings, Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 >>> My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF.<<< At the chinese place that we go to, they have Mei Fun. It is rice noodles with vegetables and then your choice of chicken, etc. The person at the counter said they only put salt in this dish as far as seasonings go. Our CD daughter ate them and loved them and has never shown a reaction to the dish. (Although, she does not show outward symptoms very easily.) Also, this same place has a " Special Diet and Health " section of there menu. These items are only prepared with garlic, ginger, green onions, and red wine. Then it has different options of chicken, just veggies, shrimp, etc. This is what my girls choose just about every time we get take-out from this place. So, look into those 2 options for your CD child. You may need to look around at different chinese take-out places to find one that has these items. And don't forget to ask as many questions as possible before-hand to make sure they are in fact GF. >>> I have a few questions of course. For those of you that have children with cd... did your child have growth issues? ... Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic?<<< Our CD daughter (now 5.5, diagnosed at 20months) was around the 90-95th percentile for weight and height up until she started showing symptoms at around 18months. Then she fell quickly down the charts, especially with weight. After being diagnosed, she fairly quickly gained back the weight and began to grow again. Her height took a little longer to get back to what was normal for her, but still fairly quickly. Recommended by our ped GI, we gave her Pediasure after diagnosis and this quickly added enough calories and nutrition to bulk her up. Actually, a few months after diagnosis was the only time she has ever had " chub " . So, all that being said, I don't think 6 months is too short amount of time to see significant change in your CD child's growth. >>> Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. <<< My understanding is that CD is only genetic...so someone in the family line must have CD. However, my husband and I have both been tested are were both negative. No one else in our extended families have felt " the need " to get tested so we have no idea what side carries this gene. Hope all this helps. I still remember how overwhelming it felt to have a child newly diagnosed with CD. So I want to assure you that it does get easier, much easier! We have been doing the GF thing now for almost 4 yrs and it is like second nature now. Sure there are still times of extra hassle or frustration but all-in-all, we have 2 healthy kiddos and could not feel luckier!! Blessings, Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Good luck Eileen! Keep her 100% G/F and let her read my post about my tiny son. That will motivate her. She will also learn about new tasting foods, like my son did. Have her try some new G/F foods at your local health food store. She may really like some of the stuff they have like Pamela's G/F cookies. I think they are pretty tasty! TIA, & Mike 909 980-2962 RE: Hi and Thanks My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is " failure to thrive " . She is almost 13, weights only 58 pounds, and is only 4 feet 5 inches. She is also ADHD, and it was thanks to the dr. prescribing her ritalin that we ended up with her diagnosis. He refused to give her more ritalin until we figured out that it wasnt the cause of her delayed growth. So off we went for a series of blood tests. You can guess the rest....I am being tested tommorrow. I am very glad to hear that quick growth is possible on the diet, since the doctors tell me that once she starts menstruating, she will not grow any taller! This definitley generated a sense of urgency. My biggest concern is that since she is asymptomatic in terms of stomach discomfort, etc., she is less motivated to stay on the diet, but she is motivated to get taller, so we'll see! So glad this board exists, as I have been lurking for 4 days now and picked up lots of good information.... Eileen --- & Mike wrote: > > " For those of you that have children with cd... did your child have > growth issues? That is Mattie's only symptom of cd that we know of.. > his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. > Little guy. " > > My 8 1/2 year old is also really small. He just weighs 48 pounds and > is 46 inches tall. He gained one inch on his trial G/F diet since > November. He also really has no symptoms of Celiac, but little sister > is a Celiac. He is allowed to cheat sometimes on his diet since he is > asymptomatic, however I am keeping an eye on his behavior since > cheating. He started with some garlic bread last night and an In & Out > burger today. No behavioral or physical symptoms in the least. We're > not sure he is Celiac, but since he grew and inch in just about 10 > weeks, we're considering he might be. He will be back to a complete > GF diet starting tomorrow for several more months. Then after 6 months > they will draw some blood. Our GI said it was no use poking him since > he grew the inch--something he hardly ever does! He's the size of an > average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Good luck Eileen! Keep her 100% G/F and let her read my post about my tiny son. That will motivate her. She will also learn about new tasting foods, like my son did. Have her try some new G/F foods at your local health food store. She may really like some of the stuff they have like Pamela's G/F cookies. I think they are pretty tasty! TIA, & Mike 909 980-2962 RE: Hi and Thanks My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is " failure to thrive " . She is almost 13, weights only 58 pounds, and is only 4 feet 5 inches. She is also ADHD, and it was thanks to the dr. prescribing her ritalin that we ended up with her diagnosis. He refused to give her more ritalin until we figured out that it wasnt the cause of her delayed growth. So off we went for a series of blood tests. You can guess the rest....I am being tested tommorrow. I am very glad to hear that quick growth is possible on the diet, since the doctors tell me that once she starts menstruating, she will not grow any taller! This definitley generated a sense of urgency. My biggest concern is that since she is asymptomatic in terms of stomach discomfort, etc., she is less motivated to stay on the diet, but she is motivated to get taller, so we'll see! So glad this board exists, as I have been lurking for 4 days now and picked up lots of good information.... Eileen --- & Mike wrote: > > " For those of you that have children with cd... did your child have > growth issues? That is Mattie's only symptom of cd that we know of.. > his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. > Little guy. " > > My 8 1/2 year old is also really small. He just weighs 48 pounds and > is 46 inches tall. He gained one inch on his trial G/F diet since > November. He also really has no symptoms of Celiac, but little sister > is a Celiac. He is allowed to cheat sometimes on his diet since he is > asymptomatic, however I am keeping an eye on his behavior since > cheating. He started with some garlic bread last night and an In & Out > burger today. No behavioral or physical symptoms in the least. We're > not sure he is Celiac, but since he grew and inch in just about 10 > weeks, we're considering he might be. He will be back to a complete > GF diet starting tomorrow for several more months. Then after 6 months > they will draw some blood. Our GI said it was no use poking him since > he grew the inch--something he hardly ever does! He's the size of an > average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Good luck Eileen! Keep her 100% G/F and let her read my post about my tiny son. That will motivate her. She will also learn about new tasting foods, like my son did. Have her try some new G/F foods at your local health food store. She may really like some of the stuff they have like Pamela's G/F cookies. I think they are pretty tasty! TIA, & Mike 909 980-2962 RE: Hi and Thanks My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is " failure to thrive " . She is almost 13, weights only 58 pounds, and is only 4 feet 5 inches. She is also ADHD, and it was thanks to the dr. prescribing her ritalin that we ended up with her diagnosis. He refused to give her more ritalin until we figured out that it wasnt the cause of her delayed growth. So off we went for a series of blood tests. You can guess the rest....I am being tested tommorrow. I am very glad to hear that quick growth is possible on the diet, since the doctors tell me that once she starts menstruating, she will not grow any taller! This definitley generated a sense of urgency. My biggest concern is that since she is asymptomatic in terms of stomach discomfort, etc., she is less motivated to stay on the diet, but she is motivated to get taller, so we'll see! So glad this board exists, as I have been lurking for 4 days now and picked up lots of good information.... Eileen --- & Mike wrote: > > " For those of you that have children with cd... did your child have > growth issues? That is Mattie's only symptom of cd that we know of.. > his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. > Little guy. " > > My 8 1/2 year old is also really small. He just weighs 48 pounds and > is 46 inches tall. He gained one inch on his trial G/F diet since > November. He also really has no symptoms of Celiac, but little sister > is a Celiac. He is allowed to cheat sometimes on his diet since he is > asymptomatic, however I am keeping an eye on his behavior since > cheating. He started with some garlic bread last night and an In & Out > burger today. No behavioral or physical symptoms in the least. We're > not sure he is Celiac, but since he grew and inch in just about 10 > weeks, we're considering he might be. He will be back to a complete > GF diet starting tomorrow for several more months. Then after 6 months > they will draw some blood. Our GI said it was no use poking him since > he grew the inch--something he hardly ever does! He's the size of an > average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Eileen, Best wishes. What I want to hear about later (in addition to anything you want to tell us) is whether you find that a GF diet cures any “symptoms” you and your daughter never noticed or have attributed to something else. For instance, I wonder if her focus will improve. (mine has…) Hoping… Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of Eileen Goldman Sent: Sunday, January 22, 2006 10:12 PM To: SillyYaks Subject: RE: Hi and Thanks My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is " failure to thrive " . She is almost 13, weights only 58 pounds, and is only 4 feet 5 inches. She is also ADHD, and it was thanks to the dr. prescribing her ritalin that we ended up with her diagnosis. He refused to give her more ritalin until we figured out that it wasnt the cause of her delayed growth. So off we went for a series of blood tests. You can guess the rest....I am being tested tommorrow. I am very glad to hear that quick growth is possible on the diet, since the doctors tell me that once she starts menstruating, she will not grow any taller! This definitley generated a sense of urgency. My biggest concern is that since she is asymptomatic in terms of stomach discomfort, etc., she is less motivated to stay on the diet, but she is motivated to get taller, so we'll see! So glad this board exists, as I have been lurking for 4 days now and picked up lots of good information.... Eileen --- & Mike wrote: > > " For those of you that have children with cd... did > your child have growth > issues? That is Mattie's only symptom of cd that we > know of.. his poor > growth. He is 6 1/2 and weighs 42 lbs and is 43 > inches tall. Little guy. " > > My 8 1/2 year old is also really small. He just > weighs 48 pounds and is 46 > inches tall. He gained one inch on his trial G/F > diet since November. He > also really has no symptoms of Celiac, but little > sister is a Celiac. He is > allowed to cheat sometimes on his diet since he is > asymptomatic, however I > am keeping an eye on his behavior since cheating. He > started with some > garlic bread last night and an In & Out burger > today. No behavioral or > physical symptoms in the least. We're not sure he is > Celiac, but since he > grew and inch in just about 10 weeks, we're > considering he might be. He > will be back to a complete GF diet starting tomorrow > for several more > months. Then after 6 months they will draw some > blood. Our GI said it was no > use poking him since he grew the inch--something he > hardly ever does! He's > the size of an average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Eileen, Best wishes. What I want to hear about later (in addition to anything you want to tell us) is whether you find that a GF diet cures any “symptoms” you and your daughter never noticed or have attributed to something else. For instance, I wonder if her focus will improve. (mine has…) Hoping… Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of Eileen Goldman Sent: Sunday, January 22, 2006 10:12 PM To: SillyYaks Subject: RE: Hi and Thanks My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is " failure to thrive " . She is almost 13, weights only 58 pounds, and is only 4 feet 5 inches. She is also ADHD, and it was thanks to the dr. prescribing her ritalin that we ended up with her diagnosis. He refused to give her more ritalin until we figured out that it wasnt the cause of her delayed growth. So off we went for a series of blood tests. You can guess the rest....I am being tested tommorrow. I am very glad to hear that quick growth is possible on the diet, since the doctors tell me that once she starts menstruating, she will not grow any taller! This definitley generated a sense of urgency. My biggest concern is that since she is asymptomatic in terms of stomach discomfort, etc., she is less motivated to stay on the diet, but she is motivated to get taller, so we'll see! So glad this board exists, as I have been lurking for 4 days now and picked up lots of good information.... Eileen --- & Mike wrote: > > " For those of you that have children with cd... did > your child have growth > issues? That is Mattie's only symptom of cd that we > know of.. his poor > growth. He is 6 1/2 and weighs 42 lbs and is 43 > inches tall. Little guy. " > > My 8 1/2 year old is also really small. He just > weighs 48 pounds and is 46 > inches tall. He gained one inch on his trial G/F > diet since November. He > also really has no symptoms of Celiac, but little > sister is a Celiac. He is > allowed to cheat sometimes on his diet since he is > asymptomatic, however I > am keeping an eye on his behavior since cheating. He > started with some > garlic bread last night and an In & Out burger > today. No behavioral or > physical symptoms in the least. We're not sure he is > Celiac, but since he > grew and inch in just about 10 weeks, we're > considering he might be. He > will be back to a complete GF diet starting tomorrow > for several more > months. Then after 6 months they will draw some > blood. Our GI said it was no > use poking him since he grew the inch--something he > hardly ever does! He's > the size of an average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Sally, My son is also 6 1/2 and weighs 46 lbs and is only 43 inches tall. He was diagnosed 2 years ago due to his low growth percentiles (for height). The first year GF he grew about 3 inches (double what he had done the year before) and his percentiles went from 3rd to 10th. The doctor said this was good. Since then however - in the last year - I think he has only grown 2 inches. He doesnt see the GI again until June so we have to wait. It concerns me though. Since lack of growth was his only CD symptom and my husband is 6ft tall, I thought we'd see a big growth spurt. I do need to mention though that I am of Peruvian decent and all of my family is very short - maybe he just got the short gene from me. He was also tested for growth hormone deficiency (before we knew it was CD) and this was negative. I know because he is a boy it is harder for me to see him always being the smallest in the class. It's getting hard for him too. His sister is 22 months younger than him and just as tall. Everywhere we go I get asked if they are twins (they look a lot alike). I guess we just have to continue to be patient. It is hard though. I hope you see better results. Hi and Thanks Hi, This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just wanted to say thanks to all who emailed and responded to my questions re: what foods to buy first. And... great suggestion from whomever wrote and said try not to replace his favorites with faux gluten free. We are trying so many new foods with him (Mattie has lots of sensory issues with food so I was so hesitant to do this) and so far so good. Still haven't found a good substitute for white bread but I haven't order the kinnikinick? bread yet or made my own, just tryed whole foods, and ener-g. My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF. Oh well, live and learn. Mattie has never had any intestinal reaction to gluten that we know of so we will just be careful next time. I have a few questions of course. For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come from very tall families both of us have brothers that are 6'6 " so we have been trying to figure this out for awhile now. Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic? Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. We have 3 kids... our 4 1/2 year old was tested and was negative, our 9 month old won't be tested until she is at least 2. TMI, right??? Anyway... things are going well, just feel like I have to plan my meals so much more in advance but can honestly say he is handling it as best as we could expect. Thanks again for all the great ideas and advice, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Sally, My son is also 6 1/2 and weighs 46 lbs and is only 43 inches tall. He was diagnosed 2 years ago due to his low growth percentiles (for height). The first year GF he grew about 3 inches (double what he had done the year before) and his percentiles went from 3rd to 10th. The doctor said this was good. Since then however - in the last year - I think he has only grown 2 inches. He doesnt see the GI again until June so we have to wait. It concerns me though. Since lack of growth was his only CD symptom and my husband is 6ft tall, I thought we'd see a big growth spurt. I do need to mention though that I am of Peruvian decent and all of my family is very short - maybe he just got the short gene from me. He was also tested for growth hormone deficiency (before we knew it was CD) and this was negative. I know because he is a boy it is harder for me to see him always being the smallest in the class. It's getting hard for him too. His sister is 22 months younger than him and just as tall. Everywhere we go I get asked if they are twins (they look a lot alike). I guess we just have to continue to be patient. It is hard though. I hope you see better results. Hi and Thanks Hi, This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just wanted to say thanks to all who emailed and responded to my questions re: what foods to buy first. And... great suggestion from whomever wrote and said try not to replace his favorites with faux gluten free. We are trying so many new foods with him (Mattie has lots of sensory issues with food so I was so hesitant to do this) and so far so good. Still haven't found a good substitute for white bread but I haven't order the kinnikinick? bread yet or made my own, just tryed whole foods, and ener-g. My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF. Oh well, live and learn. Mattie has never had any intestinal reaction to gluten that we know of so we will just be careful next time. I have a few questions of course. For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come from very tall families both of us have brothers that are 6'6 " so we have been trying to figure this out for awhile now. Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic? Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. We have 3 kids... our 4 1/2 year old was tested and was negative, our 9 month old won't be tested until she is at least 2. TMI, right??? Anyway... things are going well, just feel like I have to plan my meals so much more in advance but can honestly say he is handling it as best as we could expect. Thanks again for all the great ideas and advice, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Sally, My son is also 6 1/2 and weighs 46 lbs and is only 43 inches tall. He was diagnosed 2 years ago due to his low growth percentiles (for height). The first year GF he grew about 3 inches (double what he had done the year before) and his percentiles went from 3rd to 10th. The doctor said this was good. Since then however - in the last year - I think he has only grown 2 inches. He doesnt see the GI again until June so we have to wait. It concerns me though. Since lack of growth was his only CD symptom and my husband is 6ft tall, I thought we'd see a big growth spurt. I do need to mention though that I am of Peruvian decent and all of my family is very short - maybe he just got the short gene from me. He was also tested for growth hormone deficiency (before we knew it was CD) and this was negative. I know because he is a boy it is harder for me to see him always being the smallest in the class. It's getting hard for him too. His sister is 22 months younger than him and just as tall. Everywhere we go I get asked if they are twins (they look a lot alike). I guess we just have to continue to be patient. It is hard though. I hope you see better results. Hi and Thanks Hi, This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just wanted to say thanks to all who emailed and responded to my questions re: what foods to buy first. And... great suggestion from whomever wrote and said try not to replace his favorites with faux gluten free. We are trying so many new foods with him (Mattie has lots of sensory issues with food so I was so hesitant to do this) and so far so good. Still haven't found a good substitute for white bread but I haven't order the kinnikinick? bread yet or made my own, just tryed whole foods, and ener-g. My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to " cross contaminate " but I realized later that the sauce most likely had soy sauce in it and probably not GF. Oh well, live and learn. Mattie has never had any intestinal reaction to gluten that we know of so we will just be careful next time. I have a few questions of course. For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come from very tall families both of us have brothers that are 6'6 " so we have been trying to figure this out for awhile now. Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic? Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been " tested " yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. We have 3 kids... our 4 1/2 year old was tested and was negative, our 9 month old won't be tested until she is at least 2. TMI, right??? Anyway... things are going well, just feel like I have to plan my meals so much more in advance but can honestly say he is handling it as best as we could expect. Thanks again for all the great ideas and advice, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Sally, my daughter was diagnosed 2 years ago with CD. At the time, she was 5 1/2 and was 43 in. and weighed 43 lbs. Now, 2 years later, at 7 1/2, she is 47 in. and 50 lbs. She is still the smallest in her class, but she has been steadily growing. The doctor said she was in the 25th percentile for her height and weight. I think 6 months is too soon to see a huge growth spurt, but he will probably grow a couple of inches in that time, and will continue to steadily improve. Lorie Winter Haven, FL Hi and Thanks Hi,This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just wanted to say thanks to all who emailed and responded to my questions re: what foods to buy first. And... great suggestion from whomever wrote and said try not to replace his favorites with faux gluten free. We are trying so many new foods with him (Mattie has lots of sensory issues with food so I was so hesitant to do this) and so far so good. Still haven't found a good substitute for white bread but I haven't order the kinnikinick? bread yet or made my own, just tryed whole foods, and ener-g.My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to "cross contaminate" but I realized later that the sauce most likely had soy sauce in it and probably not GF. Oh well, live and learn. Mattie has never had any intestinal reaction to gluten that we know of so we will just be careful next time.I have a few questions of course. For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come from very tall families both of us have brothers that are 6'6" so we have been trying to figure this out for awhile now. Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic?Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been "tested" yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. We have 3 kids... our 4 1/2 year old was tested and was negative, our 9 month old won't be tested until she is at least 2. TMI, right??? Anyway... things are going well, just feel like I have to plan my meals so much more in advance but can honestly say he is handling it as best as we could expect. Thanks again for all the great ideas and advice,Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Yes, my son had growth problems, in fact, that was his only symptom, he was diagnosed just before his 15th birthday. When he was 10 years old, he was in the 75th percentile for height, 25th percentile for weight; by the time he was 14 and a half, he was 25th percentile for height, 5th percentile for weight. When diagnosed, he was 5'4 " and weighted 90 pounds. He has been on a gluten diet since April of 2005 with great results. Allowing that it took 3 months for his villa to recover, over the subsequent 18 months, he has gained over 6 inches in height and over 32 pounds in weight, and his doctor believes he should be able to achieve all the growth he is capable of realizing. He's pretty athlethic and plays on his HS's varsity team. Again, no symptoms other than lack of growth. We took him to an endocronologist thinking he needed a blast of testosterone to kick start puberty. Fortunately, in the blood tests for testosterone level, the endo also screened for celiac markers. My son tested high positive and the subsequent biospy confirmed the diagnosis. Not sure when the celiac reaction kicked in, looking at his growth chart, his weight percentile starting dropping around 9 yo, his height around 10 yo. I wanted to explain the circumstances of my son's diagnosis so that if folks encounter a similar set of circumstances, they can alert parents to screen for celiac. Over this period, a lot of folks we encounted cited anecdotal instances such as " oh, when I was a kid in HS, I was real short, and then grew 6 inches when I turned 17, so I'm not sure you should be all that worried that you son is not growing, it's not uncommon " . And yes, while that may be a fairly accurate statement, that is, some kids do stop growing and are late blommers, given that all you need to do is get a blood test, if you know of adolelescents who have really stopped growing, I would suggest the parents have the kids screened for celiac. In fact, at the UM Baltimore Celiac center, the nutritutionist say if a child experiences more than a 10% drop on the growth chart for height, a blood test should be conducted. As always, thanks to you Melonie, great site, I check it all the time, very helpful. Art > > > " For those of you that have children with cd... did your child have growth > issues? That is Mattie's only symptom of cd that we know of.. his poor > growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. " > > My 8 1/2 year old is also really small. He just weighs 48 pounds and is 46 > inches tall. He gained one inch on his trial G/F diet since November. He > also really has no symptoms of Celiac, but little sister is a Celiac. He is > allowed to cheat sometimes on his diet since he is asymptomatic, however I > am keeping an eye on his behavior since cheating. He started with some > garlic bread last night and an In & Out burger today. No behavioral or > physical symptoms in the least. We're not sure he is Celiac, but since he > grew and inch in just about 10 weeks, we're considering he might be. He > will be back to a complete GF diet starting tomorrow for several more > months. Then after 6 months they will draw some blood. Our GI said it was no > use poking him since he grew the inch--something he hardly ever does! He's > the size of an average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Yes, my son had growth problems, in fact, that was his only symptom, he was diagnosed just before his 15th birthday. When he was 10 years old, he was in the 75th percentile for height, 25th percentile for weight; by the time he was 14 and a half, he was 25th percentile for height, 5th percentile for weight. When diagnosed, he was 5'4 " and weighted 90 pounds. He has been on a gluten diet since April of 2005 with great results. Allowing that it took 3 months for his villa to recover, over the subsequent 18 months, he has gained over 6 inches in height and over 32 pounds in weight, and his doctor believes he should be able to achieve all the growth he is capable of realizing. He's pretty athlethic and plays on his HS's varsity team. Again, no symptoms other than lack of growth. We took him to an endocronologist thinking he needed a blast of testosterone to kick start puberty. Fortunately, in the blood tests for testosterone level, the endo also screened for celiac markers. My son tested high positive and the subsequent biospy confirmed the diagnosis. Not sure when the celiac reaction kicked in, looking at his growth chart, his weight percentile starting dropping around 9 yo, his height around 10 yo. I wanted to explain the circumstances of my son's diagnosis so that if folks encounter a similar set of circumstances, they can alert parents to screen for celiac. Over this period, a lot of folks we encounted cited anecdotal instances such as " oh, when I was a kid in HS, I was real short, and then grew 6 inches when I turned 17, so I'm not sure you should be all that worried that you son is not growing, it's not uncommon " . And yes, while that may be a fairly accurate statement, that is, some kids do stop growing and are late blommers, given that all you need to do is get a blood test, if you know of adolelescents who have really stopped growing, I would suggest the parents have the kids screened for celiac. In fact, at the UM Baltimore Celiac center, the nutritutionist say if a child experiences more than a 10% drop on the growth chart for height, a blood test should be conducted. As always, thanks to you Melonie, great site, I check it all the time, very helpful. Art > > > " For those of you that have children with cd... did your child have growth > issues? That is Mattie's only symptom of cd that we know of.. his poor > growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. " > > My 8 1/2 year old is also really small. He just weighs 48 pounds and is 46 > inches tall. He gained one inch on his trial G/F diet since November. He > also really has no symptoms of Celiac, but little sister is a Celiac. He is > allowed to cheat sometimes on his diet since he is asymptomatic, however I > am keeping an eye on his behavior since cheating. He started with some > garlic bread last night and an In & Out burger today. No behavioral or > physical symptoms in the least. We're not sure he is Celiac, but since he > grew and inch in just about 10 weeks, we're considering he might be. He > will be back to a complete GF diet starting tomorrow for several more > months. Then after 6 months they will draw some blood. Our GI said it was no > use poking him since he grew the inch--something he hardly ever does! He's > the size of an average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Yes, my son had growth problems, in fact, that was his only symptom, he was diagnosed just before his 15th birthday. When he was 10 years old, he was in the 75th percentile for height, 25th percentile for weight; by the time he was 14 and a half, he was 25th percentile for height, 5th percentile for weight. When diagnosed, he was 5'4 " and weighted 90 pounds. He has been on a gluten diet since April of 2005 with great results. Allowing that it took 3 months for his villa to recover, over the subsequent 18 months, he has gained over 6 inches in height and over 32 pounds in weight, and his doctor believes he should be able to achieve all the growth he is capable of realizing. He's pretty athlethic and plays on his HS's varsity team. Again, no symptoms other than lack of growth. We took him to an endocronologist thinking he needed a blast of testosterone to kick start puberty. Fortunately, in the blood tests for testosterone level, the endo also screened for celiac markers. My son tested high positive and the subsequent biospy confirmed the diagnosis. Not sure when the celiac reaction kicked in, looking at his growth chart, his weight percentile starting dropping around 9 yo, his height around 10 yo. I wanted to explain the circumstances of my son's diagnosis so that if folks encounter a similar set of circumstances, they can alert parents to screen for celiac. Over this period, a lot of folks we encounted cited anecdotal instances such as " oh, when I was a kid in HS, I was real short, and then grew 6 inches when I turned 17, so I'm not sure you should be all that worried that you son is not growing, it's not uncommon " . And yes, while that may be a fairly accurate statement, that is, some kids do stop growing and are late blommers, given that all you need to do is get a blood test, if you know of adolelescents who have really stopped growing, I would suggest the parents have the kids screened for celiac. In fact, at the UM Baltimore Celiac center, the nutritutionist say if a child experiences more than a 10% drop on the growth chart for height, a blood test should be conducted. As always, thanks to you Melonie, great site, I check it all the time, very helpful. Art > > > " For those of you that have children with cd... did your child have growth > issues? That is Mattie's only symptom of cd that we know of.. his poor > growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. " > > My 8 1/2 year old is also really small. He just weighs 48 pounds and is 46 > inches tall. He gained one inch on his trial G/F diet since November. He > also really has no symptoms of Celiac, but little sister is a Celiac. He is > allowed to cheat sometimes on his diet since he is asymptomatic, however I > am keeping an eye on his behavior since cheating. He started with some > garlic bread last night and an In & Out burger today. No behavioral or > physical symptoms in the least. We're not sure he is Celiac, but since he > grew and inch in just about 10 weeks, we're considering he might be. He > will be back to a complete GF diet starting tomorrow for several more > months. Then after 6 months they will draw some blood. Our GI said it was no > use poking him since he grew the inch--something he hardly ever does! He's > the size of an average 5 year old--that is tiny! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Sally, My son, who will be 15 next week, was diagnosed a year ago last October. At the time of diagnosis (almost 14), he was 75 pounds and 4'11 " , looking more like a 4-5th grader than an 8th grader. It was actually his failure to grow that led to his diagnosis. Our ped was also concerned about growth hormone deficiencies and tested him for them as well as did an xray of his wrist. His most recent wrist xray (last month) showed that his bone age was only 12. His growth hormone levels were normal, but other hormone testing indicated that he was just entering the 4th phase of puberty, the phase in which you are supposed to grow. In the past month, he has finally started growing. The pediatric endocrinologist said CD wouldn't likely affect his long- term growth potential since it was diagnosed and managed before his growth spurt occurred. My husband, who thinks he has had CD since he was an adolescent, but has only been diagnosed in the past few years, now wonders how tall he would have been had his CD been diagnosed as a child! My son is still is very thin and never has liked to eat, I guess from having it make him feel awful all those years. It wasn't until he was diagnosed that he realized that joint pain, indigestion, gassiness, and nightmares ALL the time, weren't normal. Despite being tiny, Marty is strong and athletic. He just hates being treated like a mascot by his high school classmates. We keep telling him that will change, and he keeps waiting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Sally, My son, who will be 15 next week, was diagnosed a year ago last October. At the time of diagnosis (almost 14), he was 75 pounds and 4'11 " , looking more like a 4-5th grader than an 8th grader. It was actually his failure to grow that led to his diagnosis. Our ped was also concerned about growth hormone deficiencies and tested him for them as well as did an xray of his wrist. His most recent wrist xray (last month) showed that his bone age was only 12. His growth hormone levels were normal, but other hormone testing indicated that he was just entering the 4th phase of puberty, the phase in which you are supposed to grow. In the past month, he has finally started growing. The pediatric endocrinologist said CD wouldn't likely affect his long- term growth potential since it was diagnosed and managed before his growth spurt occurred. My husband, who thinks he has had CD since he was an adolescent, but has only been diagnosed in the past few years, now wonders how tall he would have been had his CD been diagnosed as a child! My son is still is very thin and never has liked to eat, I guess from having it make him feel awful all those years. It wasn't until he was diagnosed that he realized that joint pain, indigestion, gassiness, and nightmares ALL the time, weren't normal. Despite being tiny, Marty is strong and athletic. He just hates being treated like a mascot by his high school classmates. We keep telling him that will change, and he keeps waiting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Sally, My son, who will be 15 next week, was diagnosed a year ago last October. At the time of diagnosis (almost 14), he was 75 pounds and 4'11 " , looking more like a 4-5th grader than an 8th grader. It was actually his failure to grow that led to his diagnosis. Our ped was also concerned about growth hormone deficiencies and tested him for them as well as did an xray of his wrist. His most recent wrist xray (last month) showed that his bone age was only 12. His growth hormone levels were normal, but other hormone testing indicated that he was just entering the 4th phase of puberty, the phase in which you are supposed to grow. In the past month, he has finally started growing. The pediatric endocrinologist said CD wouldn't likely affect his long- term growth potential since it was diagnosed and managed before his growth spurt occurred. My husband, who thinks he has had CD since he was an adolescent, but has only been diagnosed in the past few years, now wonders how tall he would have been had his CD been diagnosed as a child! My son is still is very thin and never has liked to eat, I guess from having it make him feel awful all those years. It wasn't until he was diagnosed that he realized that joint pain, indigestion, gassiness, and nightmares ALL the time, weren't normal. Despite being tiny, Marty is strong and athletic. He just hates being treated like a mascot by his high school classmates. We keep telling him that will change, and he keeps waiting. Quote Link to comment Share on other sites More sharing options...
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