Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 I agree about having your daughter go GF. She can be A-symptomatic, but suffer from malabsorption. There are many celiacs out there with NO symptons but you are still doing the long term damage! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 DH is Dermatitis herpetiformis http://www.aocd.org/skin/dermatologic_diseases/dermatitis_herpeti.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 I am celiac and I'm worried about my 4-year-old daughter having CD as well. I kept her off gluten til she was about 1 year old, at which time her pediatrician ordered an antibody blood test to check for CD. It was negative. So we bought goldfish crackers and didn't worry about it. However, her front teeth started decaying seriously at 18 months. It wasn't from falling asleep with the bottle or sippy cup. The pediatric dentist we took her to said it was because our water wasn't fluoridated and we let her have juice (we always watered it down and she didn't have it constantly). Despite frequent brushing and flossing, putting her on fluoridated water, then Act rinse, then a prescription fluoride gel, and giving up candy, she has about 20 cavities, 2 crowns, and needs a root canal. The last 12 cavities (which happened in between 6-month checkups) haven't been filled because she now freaks out with the gas and needs to have the work done under general anesthesia. But that will cost us about $3,000 out of pocket and have only saved about half thus far. She is due for another checkup and I dread hearing about more damage. We don't let her constantly eat sugary foods; in fact she gets at most one cookie a day and some ice cream on the weekends. We let her have a watered-down sprite sometimes. She also has severe eczema and itching, as well as frequent loose bowels. She catches an infection or virus every few weeks. I worry that her antibody test gave a false negative and am tempted to eliminate gluten for a week or two and see if her itching at least improves. Despite prescription cremes, she claws at herself all the time. A blood draw or biopsy at this point would absolutely freak her out. (She's a very anxious child.) Any advice? Gulf Breeze, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Hi , My heart goes out to you. Both my sons were born without enamel on their baby teeth and had very similar issues as your daughter. I sure hope that the fillings she has do not contain mercury amalgam. My older son did okay with those, but my younger one has very high levels of mercury as a result. Certain genotypes do not detox mercury (both my youngest son and myself are in that category). If I had known that I had CD when my kids were born, I would have immediately done a gene test. My younger son is double gened and extremely sensitive - with the skin issues as well as gut issues. My sons were 8 and 10 1/2 before they started the GF diet, as I had them tested through enterolab after I found that I had the main celiac gene. If I had known that they carried the genes, I never would have added gluten to their diets. My younger son whose now 11 understands that since he is double gened that all his kids will have the gen e, so he's already mentioning that he likely shouldn't ever give them gluten. It is very sad that with the current state of conventional medicine with regards to gluten, that folks are expected to suffer before making what's deemed to be such a dramatic change to their diet, when in reality for my family that change in diet has given my sons good health and happiness. In short, I highly recommend you start your daughter on the GF diet. If you absolutely don't want to without additional testing, I would recommend you use enterolab: www.enterolab.com There is no blood draw required. It's a stool test you do in the privacy of your own home and couldn't be easier for young kids to do. Also, why does she need a root canal? Is the problem with a permanent tooth? If not, I recommend just removing the tooth. As I said, my kids have had these same issues and my younger son had 3 teeth removed last fall. And, even if it is a permanent tooth, I recommend removal rather than a root canal. Folks with a weak immune system often do not tolerate having the dead teeth remain in their mouths. Also, there is always the potential for focal infections associated with the root canal tooth and it would be too much of a stress on your daughter's immune system to have to be able to adequately deal with this. If you've not read it yet, I highly recommend you read "It's all in your Head" by Hal Huggins. It discusses how poor dental health can impact your overall immune system. I speak of all of this from first hand experience. I just had a root canal tooth removed and am feeling significantly better. I hope this helps. Again, this is just my personal experiences with the same distressing situation. B. -------------- Original message -------------- I am celiac and I'm worried about my 4-year-old daughter having CD as well. I kept her off gluten til she was about 1 year old, at which time her pediatrician ordered an antibody blood test to check for CD. It was negative. So we bought goldfish crackers and didn't worry about it.However, her front teeth started decaying seriously at 18 months. It wasn't from falling asleep with the bottle or sippy cup. The pediatric dentist we took her to said it was because our water wasn't fluoridated and we let her have juice (we always watered it down and she didn't have it constantly). Despite frequent brushing and flossing, putting her on fluoridated water, then Act rinse, then a prescription fluoride gel, and giving up candy, she has about 20 cavities, 2 crowns, and needs a root canal. The last 12 cavities (which happened in between 6-month checkups) haven't been filled because she now freaks out with the gas and needs t o have the work done under general anesthesia. But that will cost us about $3,000 out of pocket and have only saved about half thus far. She is due for another checkup and I dread hearing about more damage.We don't let her constantly eat sugary foods; in fact she gets at most one cookie a day and some ice cream on the weekends. We let her have a watered-down sprite sometimes. She also has severe eczema and itching, as well as frequent loose bowels. She catches an infection or virus every few weeks. I worry that her antibody test gave a false negative and am tempted to eliminate gluten for a week or two and see if her itching at least improves. Despite prescription cremes, she claws at herself all the time. A blood draw or biopsy at this point would absolutely freak her out. (She's a very anxious child.)Any advice?Gulf Breeze, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 How recently did she have an antibody test? If you have celiac, and especially if you have the genes twice over so she definitely has at least one celiac gene, she should probably be tested fairly regularly. Poor kid, I completely sympathize with the doctor phobia- I'd be anxious too, with that much stuff done to me at a young age. (dentist) Also, it seems like the eczema should be tested for DH.. Sounds like celiac to me, unfortunately.. but if it's not celiac, it still seems like SOMETHING is going on. Best wishes and good health to you and your little one. *hugs* > > I am celiac and I'm worried about my 4-year-old daughter having CD as > well. I kept her off gluten til she was about 1 year old, at which > time her pediatrician ordered an antibody blood test to check for CD. > It was negative. So we bought goldfish crackers and didn't worry about > it. > > However, her front teeth started decaying seriously at 18 months. It > wasn't from falling asleep with the bottle or sippy cup. The pediatric > dentist we took her to said it was because our water wasn't fluoridated > and we let her have juice (we always watered it down and she didn't > have it constantly). > > Despite frequent brushing and flossing, putting her on fluoridated > water, then Act rinse, then a prescription fluoride gel, and giving up > candy, she has about 20 cavities, 2 crowns, and needs a root canal. > The last 12 cavities (which happened in between 6-month checkups) > haven't been filled because she now freaks out with the gas and needs > to have the work done under general anesthesia. But that will cost us > about $3,000 out of pocket and have only saved about half thus far. > She is due for another checkup and I dread hearing about more damage. > > We don't let her constantly eat sugary foods; in fact she gets at most > one cookie a day and some ice cream on the weekends. We let her have a > watered-down sprite sometimes. She also has severe eczema and itching, > as well as frequent loose bowels. She catches an infection or virus > every few weeks. > > I worry that her antibody test gave a false negative and am tempted to > eliminate gluten for a week or two and see if her itching at least > improves. Despite prescription cremes, she claws at herself all the > time. A blood draw or biopsy at this point would absolutely freak her > out. (She's a very anxious child.) > > Any advice? > > > Gulf Breeze, FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Please, please please have your daughter go GF for even a week to see if there is a difference -- I am sure that you will see that there will be. She does have a lot of celiac symptoms and may have other food sensitivities and malabsorption difficulties. -----Original Message-----From: SillyYaks [mailto:SillyYaks ] On Behalf Of jbcombs2000Sent: September 8, 2006 6:04 PMTo: SillyYaks Subject: daughter's teeth I am celiac and I'm worried about my 4-year-old daughter having CD as well. I kept her off gluten til she was about 1 year old, at which time her pediatrician ordered an antibody blood test to check for CD. It was negative. So we bought goldfish crackers and didn't worry about it.However, her front teeth started decaying seriously at 18 months. It wasn't from falling asleep with the bottle or sippy cup. The pediatric dentist we took her to said it was because our water wasn't fluoridated and we let her have juice (we always watered it down and she didn't have it constantly). Despite frequent brushing and flossing, putting her on fluoridated water, then Act rinse, then a prescription fluoride gel, and giving up candy, she has about 20 cavities, 2 crowns, and needs a root canal. The last 12 cavities (which happened in between 6-month checkups) haven't been filled because she now freaks out with the gas and needs to have the work done under general anesthesia. But that will cost us about $3,000 out of pocket and have only saved about half thus far. She is due for another checkup and I dread hearing about more damage.We don't let her constantly eat sugary foods; in fact she gets at most one cookie a day and some ice cream on the weekends. We let her have a watered-down sprite sometimes. She also has severe eczema and itching, as well as frequent loose bowels. She catches an infection or virus every few weeks. I worry that her antibody test gave a false negative and am tempted to eliminate gluten for a week or two and see if her itching at least improves. Despite prescription cremes, she claws at herself all the time. A blood draw or biopsy at this point would absolutely freak her out. (She's a very anxious child.)Any advice?Gulf Breeze, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 My sons had the same problems with their teeth. I have been giving them gum, mints and toothpaste with xylitol in it. Finland has used xylitol for years in gum, candy and toothpaste. It is really great for our teeth. Do a search on the web for xylitol and you will be able to read about what it has done to reduce decay in teeth and promote better sinus health. Best Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 , Thanks so much for your reply. Her fillings do indeed contain mercury--another reason we've put off getting any more fillings. I'm sure I can ask her dentist for the other kind. And I'm making an appointment for her checkup and asking about pulling the root canal tooth (it's a baby tooth--the dentist said it had some nerve damage). I think that makes sense. My hubby and I discussed the enterolab testing and genetic testing for our daughter. I'm all for putting her on the GF diet anyway, but we'll probably do the stool test ASAP. I knew I was celiac when I had her--in fact, I got pregnant after years of infertility about 6 months after I stopped gluten. But I didn't know about the genetic testing until recently. It's encouraging to hear that your sons are healthy and happy. I used to worry about how deprived she'd be on the gf diet, but it has to be better than itching and being sick all the time. Not to mention her parents constantly chasing her around with a toothbrush! It is indeed unfortunate that so many medical professionals are so clueless about the latest research on CD. Hopefully that is changing, but I dunno. My daughter's pediatrician just nodded and agreed when I told her I was concerned about celiac disease, given my history, but she gave me no indication that she knew what to do about getting a diagnosis. Thanks again for the info...I feel much better about getting her health problems under control, just knowing that your kids saw so much improvement. > > Hi , > > My heart goes out to you. Both my sons were born without enamel on their baby teeth and had very similar issues as your daughter. I sure hope that the fillings she has do not contain mercury amalgam. My older son did okay with those, but my younger one has very high levels of mercury as a result. Certain genotypes do not detox mercury (both my youngest son and myself are in that category). If I had known that I had CD when my kids were born, I would have immediately done a gene test. My younger son is double gened and extremely sensitive - with the skin issues as well as gut issues. My sons were 8 and 10 1/2 before they started the GF diet, as I had them tested through enterolab after I found that I had the main celiac gene. If I had known that they carried the genes, I never would have added gluten to their diets. My younger son whose now 11 understands that since he is double gened that all his kids will have the gene, so he's already mentioning that he likely shouldn't > ever give them gluten. It is very sad that with the current state of conventional medicine with regards to gluten, that folks are expected to suffer before making what's deemed to be such a dramatic change to their diet, when in reality for my family that change in diet has given my sons good health and happiness. > > In short, I highly recommend you start your daughter on the GF diet. If you absolutely don't want to without additional testing, I would recommend you use enterolab: www.enterolab.com There is no blood draw required. It's a stool test you do in the privacy of your own home and couldn't be easier for young kids to do. > > Also, why does she need a root canal? Is the problem with a permanent tooth? If not, I recommend just removing the tooth. As I said, my kids have had these same issues and my younger son had 3 teeth removed last fall. And, even if it is a permanent tooth, I recommend removal rather than a root canal. Folks with a weak immune system often do not tolerate having the dead teeth remain in their mouths. Also, there is always the potential for focal infections associated with the root canal tooth and it would be too much of a stress on your daughter's immune system to have to be able to adequately deal with this. If you've not read it yet, I highly recommend you read " It's all in your Head " by Hal Huggins. It discusses how poor dental health can impact your overall immune system. I speak of all of this from first hand experience. I just had a root canal tooth removed and am feeling significantly better. > > I hope this helps. Again, this is just my personal experiences with the same distressing situation. > > B. > > > -------------- Original message -------------- > From: " jbcombs2000 " > > I am celiac and I'm worried about my 4-year-old daughter having CD as > well. I kept her off gluten til she was about 1 year old, at which > time her pediatrician ordered an antibody blood test to check for CD. > It was negative. So we bought goldfish crackers and didn't worry about > it. > > However, her front teeth started decaying seriously at 18 months. It > wasn't from falling asleep with the bottle or sippy cup. The pediatric > dentist we took her to said it was because our water wasn't fluoridated > and we let her have juice (we always watered it down and she didn't > have it constantly). > > Despite frequent brushing and flossing, putting her on fluoridated > water, then Act rinse, then a prescription fluoride gel, and giving up > candy, she has about 20 cavities, 2 crowns, and needs a root canal. > The last 12 cavities (which happened in between 6-month checkups) > haven't been filled because she now freaks out with the gas and needs > to have the work done under general anesthesia. But that will cost us > about $3,000 out of pocket and have only saved about half thus far. > She is due for another checkup and I dread hearing about more damage. > > We don't let her constantly eat sugary foods; in fact she gets at most > one cookie a day and some ice cream on the weekends. We let her have a > watered-down sprite sometimes. She also has severe eczema and itching, > as well as frequent loose bowels. She catches an infection or virus > every few weeks. > > I worry that her antibody test gave a false negative and am tempted to > eliminate gluten for a week or two and see if her itching at least > improves. Despite prescription cremes, she claws at herself all the > time. A blood draw or biopsy at this point would absolutely freak her > out. (She's a very anxious child.) > > Any advice? > > > Gulf Breeze, FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Hi , Her antibody test was 3 years ago. She had very little exposure to gluten prior to the test. So that's why I'm worried about a false negative. You're right--something is definitely up. I have fibromyalgia also, so of course I worry about her having that, but according to my mom, the celiac came first with me. (She swears that I had constant diarrhea as soon as she quit nursing me and gave me formula with a wheat product in it. Her dr. dismissed her concerns about CD. Boy was she ticked when I was finally diagnosed with CD at 35!) I've decided to prepare for a gf diet with her for 2 weeks. We have almost no resources in our area for gluten free products, so I'll have to get online and place some orders for yummy substitutes for her snacks and meals. I have to avoid starch, so I have very little in my pantry in the way of crackers and cereal. A little tapioca bread in the freezer, which she happens to love, thankfully! Thanks for the input and sympathy! > > > > I am celiac and I'm worried about my 4-year-old daughter having CD as > > well. I kept her off gluten til she was about 1 year old, at which > > time her pediatrician ordered an antibody blood test to check for CD. > > It was negative. So we bought goldfish crackers and didn't worry about > > it. > > > > However, her front teeth started decaying seriously at 18 months. It > > wasn't from falling asleep with the bottle or sippy cup. The pediatric > > dentist we took her to said it was because our water wasn't fluoridated > > and we let her have juice (we always watered it down and she didn't > > have it constantly). > > > > Despite frequent brushing and flossing, putting her on fluoridated > > water, then Act rinse, then a prescription fluoride gel, and giving up > > candy, she has about 20 cavities, 2 crowns, and needs a root canal. > > The last 12 cavities (which happened in between 6-month checkups) > > haven't been filled because she now freaks out with the gas and needs > > to have the work done under general anesthesia. But that will cost us > > about $3,000 out of pocket and have only saved about half thus far. > > She is due for another checkup and I dread hearing about more damage. > > > > We don't let her constantly eat sugary foods; in fact she gets at most > > one cookie a day and some ice cream on the weekends. We let her have a > > watered-down sprite sometimes. She also has severe eczema and itching, > > as well as frequent loose bowels. She catches an infection or virus > > every few weeks. > > > > I worry that her antibody test gave a false negative and am tempted to > > eliminate gluten for a week or two and see if her itching at least > > improves. Despite prescription cremes, she claws at herself all the > > time. A blood draw or biopsy at this point would absolutely freak her > > out. (She's a very anxious child.) > > > > Any advice? > > > > > > Gulf Breeze, FL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Tara and kawasasski, Thanks for the feedback. I'm definitely gearing up to start her on the gf diet for a 2-week trial. I'm getting online NOW to order mixes and snack foods. (We don't have much in the way of gf foods sold in stores around here, even health food stores.) I feel better just knowing that we'll at least start getting some answers. > > I agree about having your daughter go GF. She can be A-symptomatic, but > suffer from malabsorption. There are many celiacs out there with NO symptons > but you are still doing the long term damage! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Thanks for the info . We do use xylitol gum and I make lemonade for her with xylitol also. I hadn't thought about xylitol toothpaste-- I'll definitely order some of that. > > My sons had the same problems with their teeth. I have been giving them > gum, mints and toothpaste > with xylitol in it. Finland has used xylitol for years in gum, candy > and toothpaste. It is really great for > our teeth. Do a search on the web for xylitol and you will be able to > read about what it has done to reduce > decay in teeth and promote better sinus health. > Best Regards, > > Quote Link to comment Share on other sites More sharing options...
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