Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Hey all! Is maltodextrin safe for gluten intolerance? I remember reading about it somewhere, but where I don't remember. And what is the connection between maltodextrin and dextrin? Also, I have a question about celiac disease. My cousin and I both are celiacs, and I heard her talking with her friends about her celiac disease. She said that it would take a lot of gluten to actually do damage to her. Now, I've always been under the impression that even if you don't feel any symptoms from ingesting gluten, it still wreaks havoc on your small intestine if you have celiac disease. Which is true? Pennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 maltodextrin does not contain gluten. Most people think barley malt, which does contain gluten, when they see maltodextrin. It is safe though. I don't know about the connection with dextrin. I'm sure I've read about it, but I can't recall anything right now. If my memory is correct, maltodextrin comes from corn. As for celiac disease, you are correct that the gluten will cause damage even if you don't notice the symptoms. Growing up, I always had to have my toast burnt and I couldn't tolerate any kind of plain bread products. Even though I didn't make the connection (nor did a couple dozen doctors or my mother who's a nurse!) somehow, my subconscious mind knew how to cope with it. The burnt parts are essentially charcoal, which draws toxins out of the body. So I was eating the antidote with the poison, which limited my symptoms. After going gluten free though I became hypersensitive, as many do! Bread baking made me sick. After a year or so, I wasn't as sensitive and my family could happily enjoy their wheat breads without me getting sick, unless of course I accidentally ingested some of it! Most people seem to have this type of an experience. There are some though who never had any symptoms, and don't really notice the gluten when accidentally eaten. It will still cause damage to the small intestines, but your cousin may be one of those like few who really doesn't suffer the agonizing symptoms. Avoiding gluten is still a must because continued use of gluten will have unpleasant long term effects from malabsorption due to the damaged villi in the intestines. So you are correct on this! Encourage your cousin not to cheat on the diet! I could imagine how tempting it would be to cheat if you didn't experience the pain! lol Good luck with your diet! On Wed, Dec 3, 2008 at 6:51 PM, Penelope Schneider <tuba.gypsiewrote: > Hey all! > > Is maltodextrin safe for gluten intolerance? I remember reading about it > somewhere, but where I don't remember. And what is the connection between > maltodextrin and dextrin? > > Also, I have a question about celiac disease. My cousin and I both are > celiacs, and I heard her talking with her friends about her celiac disease. > She said that it would take a lot of gluten to actually do damage to her. > Now, I've always been under the impression that even if you don't feel any > symptoms from ingesting gluten, it still wreaks havoc on your small > intestine if you have celiac disease. Which is true? > > Pennie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2008 Report Share Posted December 7, 2008 I'm a silent celiac too. The only symptom I had was severe anemia that didn't respond to iron supplements. This was dismissed by doctors because I'm female and vegetarian. Oh, and I nearly hemorrhaged to death during childbirth. But since my grandpa had the same problem with anemia, I wondered if it was something else. Other family members also have anemia, but not as severe as we did. We lost Grandpa last year to a very aggressive cancer. Anemia was his only symptom for a long time. That made me really start questioning what was going on. When I finally started seeing a holistic osteopath for this and a variety of other issues (thyroid disease, mostly) he tested for celiac disease. Since I'm very overweight (thanks, thyroid!) that came as a shock! But after reading more about silent celiac disease, a lot of things made sense. Six months after starting a gluten-free diet, I've seen a lot of positive changes. I guess I wasn't as silent as I thought; I just wasn't understanding my body! -I've had lumps on the back of my neck as long as I can remember. These were swollen lymph nodes. Doctors always dismissed these as a mild infection. (For 35 years???) One month gluten free, and they were gone. Hmm, could a gluten-free diet have kept my grandpa around for a few more years? -My migraines pretty much went away - except for the few instances where I've been cross-contaminated or otherwise accidentally ingested gluten. -My itchy, dry skin got better. -My face isn't as swollen. It's hard to follow a gluten free diet, but it is so worth it! One friend gave me a piece of advice: WHEAT=POISON=LYMPHOMA. That is quite a motivator!! Good luck, Angela On Wed, Dec 3, 2008 at 10:39 PM, Jae Jones <recyclednew wrote: > maltodextrin does not contain gluten. Most people think barley malt, which > does contain gluten, when they see maltodextrin. It is safe though. I don't > know about the connection with dextrin. I'm sure I've read about it, but I > can't recall anything right now. If my memory is correct, maltodextrin comes > from corn. > > As for celiac disease, you are correct that the gluten will cause damage > even if you don't notice the symptoms. Growing up, I always had to have my > toast burnt and I couldn't tolerate any kind of plain bread products. Even > though I didn't make the connection (nor did a couple dozen doctors or my > mother who's a nurse!) somehow, my subconscious mind knew how to cope with > it. The burnt parts are essentially charcoal, which draws toxins out of the > body. So I was eating the antidote with the poison, which limited my > symptoms. After going gluten free though I became hypersensitive, as many > do! Bread baking made me sick. After a year or so, I wasn't as sensitive and > my family could happily enjoy their wheat breads without me getting sick, > unless of course I accidentally ingested some of it! Most people seem to > have this type of an experience. There are some though who never had any > symptoms, and don't really notice the gluten when accidentally eaten. It > will still cause damage to the small intestines, but your cousin may be one > of those like few who really doesn't suffer the agonizing symptoms. Avoiding > gluten is still a must because continued use of gluten will have unpleasant > long term effects from malabsorption due to the damaged villi in the > intestines. So you are correct on this! Encourage your cousin not to cheat > on the diet! I could imagine how tempting it would be to cheat if you didn't > experience the pain! lol > > Good luck with your diet! > > On Wed, Dec 3, 2008 at 6:51 PM, Penelope Schneider > <tuba.gypsiewrote: > >> Hey all! >> >> Is maltodextrin safe for gluten intolerance? I remember reading about it >> somewhere, but where I don't remember. And what is the connection between >> maltodextrin and dextrin? >> >> Also, I have a question about celiac disease. My cousin and I both are >> celiacs, and I heard her talking with her friends about her celiac >> disease. >> She said that it would take a lot of gluten to actually do damage to her. >> Now, I've always been under the impression that even if you don't feel any >> symptoms from ingesting gluten, it still wreaks havoc on your small >> intestine if you have celiac disease. Which is true? >> >> Pennie >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2008 Report Share Posted December 7, 2008 There is also a rare form of celiac in which the anemia does not get better on the gluten free diet. I had my iron tested last month and it's still extremely low. My doctor started discussing with me the possibility of have this rare form and he's doing more test. I also have chronic pancreatitis which causes malabsorption problems, so in my case it could be continuing because of the malabsorption. I've often wondered though about how much my diet adversely affected my health. Many of my symptoms where overlooked and ignored for most of my life. Even after I brought up celiac with 3 different gastroenterologist it still took them over 2 years to do any test. Finally one doctor decided to do a biopsy during a routine endoscope, but I had been gluten free for over 2 years so of course the biopsy was normal! It's so frustrating when you have severe symptoms and chronic pain and the doctors refuse to listen to you or refer you to a psychologist because it's all in your head! Since birth my mother had said to many doctors there is something seriously wrong with my child and your not going to figure it out until the autopsy! I was starting to believe that would be the case until I went gluten free and I stopped vomiting, the rash and lumps went away, the abdominal cramps stopped, and the constant migraines stopped. I don't get sick as often either. Before I would catch a cold and I'd be sick for months! I almost always had a sinus infection. I always had some kind of infection! If I got cut or bruised it took forever for me to heal. I'm still a slow healer because of the anemia but it's not as bad. When I was a kid in school they had a routine exam once and this was around April or may. They started all kinds of investigations on abuse because I had a bruise that didn't heal yet from when I had fallen (at the school) in the November before! When there is constant issues, no matter how insignificant they seem, they should be tested. I believe doctors, for the most part, are in the business of keeping people sick! Especially when it comes to simple dietary changes being the only prescription they can give! How much money can they make off your diet? In some places you can get a prescription for gf food, but unfortunately in the US you can't! Angela, did you develop any rashes or new symptoms when you became pregnant? Often times the change in hormones can trigger new symptoms. I'm glad they where able to save you. That would have been a shame. At least your doing better now with the gf diet. Sorry about your grandpa. They really should have tested him because it's rare for men to have anemia, and it's usually a lot worse for them. Same with osteoporosis...it's a lot worse for men! Thanks for sharing your story. Not many celiacs talk about anemia. On Sun, Dec 7, 2008 at 11:34 AM, Angela McBride <amcbride3 wrote: > I'm a silent celiac too. The only symptom I had was severe anemia > that didn't respond to iron supplements. This was dismissed by > doctors because I'm female and vegetarian. Oh, and I nearly > hemorrhaged to death during childbirth. But since my grandpa had the > same problem with anemia, I wondered if it was something else. Other > family members also have anemia, but not as severe as we did. We lost > Grandpa last year to a very aggressive cancer. Anemia was his only > symptom for a long time. That made me really start questioning what > was going on. > > When I finally started seeing a holistic osteopath for this and a > variety of other issues (thyroid disease, mostly) he tested for celiac > disease. Since I'm very overweight (thanks, thyroid!) that came as a > shock! But after reading more about silent celiac disease, a lot of > things made sense. > > Six months after starting a gluten-free diet, I've seen a lot of > positive changes. I guess I wasn't as silent as I thought; I just > wasn't understanding my body! > > -I've had lumps on the back of my neck as long as I can remember. > These were swollen lymph nodes. Doctors always dismissed these as a > mild infection. (For 35 years???) One month gluten free, and they > were gone. Hmm, could a gluten-free diet have kept my grandpa around > for a few more years? > > -My migraines pretty much went away - except for the few instances > where I've been cross-contaminated or otherwise accidentally ingested > gluten. > > -My itchy, dry skin got better. > > -My face isn't as swollen. > > It's hard to follow a gluten free diet, but it is so worth it! One > friend gave me a piece of advice: WHEAT=POISON=LYMPHOMA. That is > quite a motivator!! > > Good luck, > Angela > > > On Wed, Dec 3, 2008 at 10:39 PM, Jae Jones <recyclednew<recyclednew%40gmail.com>> > wrote: > > maltodextrin does not contain gluten. Most people think barley malt, > which > > does contain gluten, when they see maltodextrin. It is safe though. I > don't > > know about the connection with dextrin. I'm sure I've read about it, but > I > > can't recall anything right now. If my memory is correct, maltodextrin > comes > > from corn. > > > > As for celiac disease, you are correct that the gluten will cause damage > > even if you don't notice the symptoms. Growing up, I always had to have > my > > toast burnt and I couldn't tolerate any kind of plain bread products. > Even > > though I didn't make the connection (nor did a couple dozen doctors or my > > mother who's a nurse!) somehow, my subconscious mind knew how to cope > with > > it. The burnt parts are essentially charcoal, which draws toxins out of > the > > body. So I was eating the antidote with the poison, which limited my > > symptoms. After going gluten free though I became hypersensitive, as many > > do! Bread baking made me sick. After a year or so, I wasn't as sensitive > and > > my family could happily enjoy their wheat breads without me getting sick, > > unless of course I accidentally ingested some of it! Most people seem to > > have this type of an experience. There are some though who never had any > > symptoms, and don't really notice the gluten when accidentally eaten. It > > will still cause damage to the small intestines, but your cousin may be > one > > of those like few who really doesn't suffer the agonizing symptoms. > Avoiding > > gluten is still a must because continued use of gluten will have > unpleasant > > long term effects from malabsorption due to the damaged villi in the > > intestines. So you are correct on this! Encourage your cousin not to > cheat > > on the diet! I could imagine how tempting it would be to cheat if you > didn't > > experience the pain! lol > > > > Good luck with your diet! > > > > On Wed, Dec 3, 2008 at 6:51 PM, Penelope Schneider > > <tuba.gypsie <tuba.gypsie%40>>wrote: > > > >> Hey all! > >> > >> Is maltodextrin safe for gluten intolerance? I remember reading about it > >> somewhere, but where I don't remember. And what is the connection > between > >> maltodextrin and dextrin? > >> > >> Also, I have a question about celiac disease. My cousin and I both are > >> celiacs, and I heard her talking with her friends about her celiac > >> disease. > >> She said that it would take a lot of gluten to actually do damage to > her. > >> Now, I've always been under the impression that even if you don't feel > any > >> symptoms from ingesting gluten, it still wreaks havoc on your small > >> intestine if you have celiac disease. Which is true? > >> > >> Pennie > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2008 Report Share Posted December 7, 2008 Did you doctor suggest testing your cortisol levels. It appears many people with CD have hyperactive cortisol products and this can affect iron absorption. BL On Sun, Dec 7, 2008 at 11:47 AM, Jae Jones <recyclednew wrote: > There is also a rare form of celiac in which the anemia does not get > better > on the gluten free diet. I had my iron tested last month and it's still > extremely low. My doctor started discussing with me the possibility of have > this rare form and he's doing more test. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 He just tested my cortisol about 3 weeks ago. Also did a fecal fat and a complete metabolic profile. I have serious malabsorption problems which are getting worse despite the diet and enzyme supplements, etc. On Sun, Dec 7, 2008 at 3:38 PM, Brenda-Lee Olson < shalomaleichemacademy wrote: > Did you doctor suggest testing your cortisol levels. It appears many > people > with CD have hyperactive cortisol products and this can affect iron > absorption. > > BL > > > On Sun, Dec 7, 2008 at 11:47 AM, Jae Jones <recyclednew<recyclednew%40gmail.com>> > wrote: > > > There is also a rare form of celiac in which the anemia does not get > > better > > on the gluten free diet. I had my iron tested last month and it's still > > extremely low. My doctor started discussing with me the possibility of > have > > this rare form and he's doing more test. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Did you have a serum cortisol test or a urine test. I am trying to decide what to do with this. My doctor says the medical will only cover the serum but the serum only tests twice where the urinary analysis checks 6 days throughout one day. BL On Sun, Dec 7, 2008 at 5:37 PM, Jae Jones <recyclednew wrote: > He just tested my cortisol about 3 weeks ago. Also did a fecal fat and a > complete metabolic profile. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 They did the serum test this time. I had urine done years back, but nothing significantly out of the norm ever showed. I've even had DNA testing done twice! I apparently have a form of CF. Not sure how significant that is to the anemia. I know it affects my triglycerides and LDL, which are through the roof and climbing! I eat virtually no cholesterol and very little fat. Most of my fat is healthy fats. We joke is that everything runs in my family and I inherited it all! lol On Sun, Dec 7, 2008 at 11:40 PM, Brenda-Lee Olson < shalomaleichemacademy wrote: > Did you have a serum cortisol test or a urine test. I am trying to > decide > what to do with this. My doctor says the medical will only cover the serum > but the serum only tests twice where the urinary analysis checks 6 days > throughout one day. > > BL > > > On Sun, Dec 7, 2008 at 5:37 PM, Jae Jones <recyclednew<recyclednew%40gmail.com>> > wrote: > > > He just tested my cortisol about 3 weeks ago. Also did a fecal fat and a > > complete metabolic profile. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Thanks Jae. My cholesterol is fine, so it's not in that area, but cortisol is obviously a problem for me and having been on a supplement which reduces the levels in my body I have lost 40 pounds in 3 months, so I was hoping to get some medical support, but probably won't. I appreciate you taking the time to respond. BL On Sun, Dec 7, 2008 at 10:45 PM, Jae Jones <recyclednew wrote: > They did the serum test this time. I had urine done years back, but > nothing > significantly out of the norm ever showed. I've even had DNA testing done > twice! I apparently have a form of CF. Not sure how significant that is to > the anemia. I know it affects my triglycerides and LDL, which are through > the roof and climbing! I eat virtually no cholesterol and very little fat. > Most of my fat is healthy fats. We joke is that everything runs in my > family > and I inherited it all! lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 It's good that your losing some weight but 40 lbs in 3 months seems like a lot! Over the past year I've been gaining weight but getting thinner. Nobody can figure that out! My health is a massive train wreck that nobody wants to even try to sort out! lol I went to the best gastroenterologist in the field and he referred me out to a different GI! I've been passed off from doctor to doctor my whole life and blindly prescribed medications that have done more harm than good. I quit going to doctors because I got fed up with all the pills and no answers. The only reason I went to Dr. Stanley now is because I heard him speak at the celiac seminar here in Pittsburgh. He is the first doctor that put his prescription pad away and said lets figure all this out! I'm still waiting on some lab results and answers, but at least I finally found a doctor willing to take the time to listen and try to help. I know what it's like to feel completely alone and hopeless and in pain with nobody listening or helping you. I still feel very much alone in my health battle, but knowing there are people willing to listen and talk, even if they are not going through the same exact problem, helps a lot. Just remember you are not alone. We all have each other here to lean on, regardless of our differences. Understanding, respect and honesty is all we really need when battling with health issues. That's what support groups are for! Hope you find some peace and comfort. Take care... On Mon, Dec 8, 2008 at 11:46 AM, Brenda-Lee Olson < shalomaleichemacademy wrote: > Thanks Jae. My cholesterol is fine, so it's not in that area, but > cortisol > is obviously a problem for me and having been on a supplement which reduces > the levels in my body I have lost 40 pounds in 3 months, so I was hoping to > get some medical support, but probably won't. I appreciate you taking the > time to respond. > > BL > > > On Sun, Dec 7, 2008 at 10:45 PM, Jae Jones <recyclednew<recyclednew%40gmail.com>> > wrote: > > > They did the serum test this time. I had urine done years back, but > > nothing > > significantly out of the norm ever showed. I've even had DNA testing done > > twice! I apparently have a form of CF. Not sure how significant that is > to > > the anemia. I know it affects my triglycerides and LDL, which are through > > the roof and climbing! I eat virtually no cholesterol and very little > fat. > > Most of my fat is healthy fats. We joke is that everything runs in my > > family > > and I inherited it all! lol > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Re the weight loss. My husband thinks it's too fast too, but if on averages it out that's only 3 pounds per week, so it's not really all that fast. :-) The thing is the supplement I am taking has a metabolism booster and I have always had a slower metabolism. I also drink loads of water (5 - 6 litres per day) so I am detoxing the whatever was stored in that fat cells as well. Yes, it's important to have others to talk with. We all need encouragement and support. BL On Mon, Dec 8, 2008 at 12:12 PM, Jae Jones <recyclednew wrote: > It's good that your losing some weight but 40 lbs in 3 months seems like > a > lot! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Thanks for your email. I really needed to read this today. Pamela -------------- Original message from " Jae Jones " <recyclednew: -------------- It's good that your losing some weight but 40 lbs in 3 months seems like a lot! Over the past year I've been gaining weight but getting thinner. Nobody can figure that out! My health is a massive train wreck that nobody wants to even try to sort out! lol I went to the best gastroenterologist in the field and he referred me out to a different GI! I've been passed off from doctor to doctor my whole life and blindly prescribed medications that have done more harm than good. I quit going to doctors because I got fed up with all the pills and no answers. The only reason I went to Dr. Stanley now is because I heard him speak at the celiac seminar here in Pittsburgh. He is the first doctor that put his prescription pad away and said lets figure all this out! I'm still waiting on some lab results and answers, but at least I finally found a doctor willing to take the time to listen and try to help. I know what it's like to feel completely alone and hopeless and in pain with nobody listening or helping you. I still feel very much alone in my health battle, but knowing there are people willing to listen and talk, even if they are not going through the same exact problem, helps a lot. Just remember you are not alone. We all have each other here to lean on, regardless of our differences. Understanding, respect and honesty is all we really need when battling with health issues. That's what support groups are for! Hope you find some peace and comfort. Take care... On Mon, Dec 8, 2008 at 11:46 AM, Brenda-Lee Olson < shalomaleichemacademy wrote: > Thanks Jae. My cholesterol is fine, so it's not in that area, but > cortisol > is obviously a problem for me and having been on a supplement which reduces > the levels in my body I have lost 40 pounds in 3 months, so I was hoping to > get some medical support, but probably won't. I appreciate you taking the > time to respond. > > BL > > > On Sun, Dec 7, 2008 at 10:45 PM, Jae Jones <recyclednew<recyclednew%40gmail.com>> > wrote: > > > They did the serum test this time. I had urine done years back, but > > nothing > > significantly out of the norm ever showed. I've even had DNA testing done > > twice! I apparently have a form of CF. Not sure how significant that is > to > > the anemia. I know it affects my triglycerides and LDL, which are through > > the roof and climbing! I eat virtually no cholesterol and very little > fat. > > Most of my fat is healthy fats. We joke is that everything runs in my > > family > > and I inherited it all! lol > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 Jae (and everyone else), Thanks for the supportive comments. Yes, in fact, we did indeed have Grandpa tested for celiac disease, and the test came back negative. BUT, I do not know what test they did, and as I understand it, some tests are more sensitive than others. I do know that he did not have an endoscopic biopsy. I also know that Dr. Dimwit, as my aunt and I call him, dismissed his other symptoms as well, and by the time he saw an oncologist, he was in Stage 4 cancer. Part of that is because it was a very aggressive cancer, and part of that is that Dr. Dimwit totally ignored many symptoms. OK, enough ranting there. To answer your question about changes in symptoms during pregnancy, I really can't answer that. Since I have my own Dr. Dimwit, and did not know that I was pregnant until about 7 months along. I knew something was wrong - I was sick a lot, which was dismissed as " the bug that's going around " . I was very tired - dismissed as " working too hard " . The weight gain - " your metabolism slows down at 30. " (Um, not THAT slow!) The weird moving around in my stomach - " trapped gas " . I missed a few periods, but every time I got concerned and decided to take a pregnancy test, I started bleeding the next morning. It turned out that I had placenta previa, which is very dangerous for both baby and mommy. I had an emergency c-section a month after finding out I was pregnant, and nearly hemorrhaged in the process. Yet another reason for anemia. After struggling with a number of postpartum problems (and a preemie baby with colic, which I later found out may have been helped if I had been on a GF diet), I finally found a good doctor who quickly figured out that I had Hashimoto's disease (thyroid), celiac disease, and adrenal/cortisol issues. We're still working out the bugs of my treatment, but it's really nice to know that it's not all in my head. Unfortunately, when I was laid off a few months ago, I lost the insurance to pay for him. I went to the doctor at our new clinic a few weeks ago, and guess what? They wanted to shove antidepressants at me - but not my very needed thyroid medicine. And dismissed the GF diet as " the latest Oprah fad. " Oy. On Sun, Dec 7, 2008 at 1:47 PM, Jae Jones <recyclednew wrote: > There is also a rare form of celiac in which the anemia does not get better > on the gluten free diet. I had my iron tested last month and it's still > extremely low. My doctor started discussing with me the possibility of have > this rare form and he's doing more test. I also have chronic pancreatitis > which causes malabsorption problems, so in my case it could be continuing > because of the malabsorption. I've often wondered though about how much my > diet adversely affected my health. Many of my symptoms where overlooked and > ignored for most of my life. Even after I brought up celiac with 3 different > gastroenterologist it still took them over 2 years to do any test. Finally > one doctor decided to do a biopsy during a routine endoscope, but I had been > gluten free for over 2 years so of course the biopsy was normal! It's so > frustrating when you have severe symptoms and chronic pain and the doctors > refuse to listen to you or refer you to a psychologist because it's all in > your head! Since birth my mother had said to many doctors there is something > seriously wrong with my child and your not going to figure it out until the > autopsy! I was starting to believe that would be the case until I went > gluten free and I stopped vomiting, the rash and lumps went away, the > abdominal cramps stopped, and the constant migraines stopped. I don't get > sick as often either. Before I would catch a cold and I'd be sick for > months! I almost always had a sinus infection. I always had some kind of > infection! If I got cut or bruised it took forever for me to heal. I'm still > a slow healer because of the anemia but it's not as bad. When I was a kid in > school they had a routine exam once and this was around April or may. They > started all kinds of investigations on abuse because I had a bruise that > didn't heal yet from when I had fallen (at the school) in the November > before! When there is constant issues, no matter how insignificant they > seem, they should be tested. I believe doctors, for the most part, are in > the business of keeping people sick! Especially when it comes to simple > dietary changes being the only prescription they can give! How much money > can they make off your diet? In some places you can get a prescription for > gf food, but unfortunately in the US you can't! > > Angela, did you develop any rashes or new symptoms when you became pregnant? > Often times the change in hormones can trigger new symptoms. I'm glad they > where able to save you. That would have been a shame. At least your doing > better now with the gf diet. Sorry about your grandpa. They really should > have tested him because it's rare for men to have anemia, and it's usually a > lot worse for them. Same with osteoporosis...it's a lot worse for men! > Thanks for sharing your story. Not many celiacs talk about anemia. > > On Sun, Dec 7, 2008 at 11:34 AM, Angela McBride <amcbride3 wrote: > >> I'm a silent celiac too. The only symptom I had was severe anemia >> that didn't respond to iron supplements. This was dismissed by >> doctors because I'm female and vegetarian. Oh, and I nearly >> hemorrhaged to death during childbirth. But since my grandpa had the >> same problem with anemia, I wondered if it was something else. Other >> family members also have anemia, but not as severe as we did. We lost >> Grandpa last year to a very aggressive cancer. Anemia was his only >> symptom for a long time. That made me really start questioning what >> was going on. >> >> When I finally started seeing a holistic osteopath for this and a >> variety of other issues (thyroid disease, mostly) he tested for celiac >> disease. Since I'm very overweight (thanks, thyroid!) that came as a >> shock! But after reading more about silent celiac disease, a lot of >> things made sense. >> >> Six months after starting a gluten-free diet, I've seen a lot of >> positive changes. I guess I wasn't as silent as I thought; I just >> wasn't understanding my body! >> >> -I've had lumps on the back of my neck as long as I can remember. >> These were swollen lymph nodes. Doctors always dismissed these as a >> mild infection. (For 35 years???) One month gluten free, and they >> were gone. Hmm, could a gluten-free diet have kept my grandpa around >> for a few more years? >> >> -My migraines pretty much went away - except for the few instances >> where I've been cross-contaminated or otherwise accidentally ingested >> gluten. >> >> -My itchy, dry skin got better. >> >> -My face isn't as swollen. >> >> It's hard to follow a gluten free diet, but it is so worth it! One >> friend gave me a piece of advice: WHEAT=POISON=LYMPHOMA. That is >> quite a motivator!! >> >> Good luck, >> Angela >> >> >> On Wed, Dec 3, 2008 at 10:39 PM, Jae Jones >> <recyclednew<recyclednew%40gmail.com>> >> wrote: >> > maltodextrin does not contain gluten. Most people think barley malt, >> which >> > does contain gluten, when they see maltodextrin. It is safe though. I >> don't >> > know about the connection with dextrin. I'm sure I've read about it, but >> I >> > can't recall anything right now. If my memory is correct, maltodextrin >> comes >> > from corn. >> > >> > As for celiac disease, you are correct that the gluten will cause damage >> > even if you don't notice the symptoms. Growing up, I always had to have >> my >> > toast burnt and I couldn't tolerate any kind of plain bread products. >> Even >> > though I didn't make the connection (nor did a couple dozen doctors or >> > my >> > mother who's a nurse!) somehow, my subconscious mind knew how to cope >> with >> > it. The burnt parts are essentially charcoal, which draws toxins out of >> the >> > body. So I was eating the antidote with the poison, which limited my >> > symptoms. After going gluten free though I became hypersensitive, as >> > many >> > do! Bread baking made me sick. After a year or so, I wasn't as sensitive >> and >> > my family could happily enjoy their wheat breads without me getting >> > sick, >> > unless of course I accidentally ingested some of it! Most people seem to >> > have this type of an experience. There are some though who never had any >> > symptoms, and don't really notice the gluten when accidentally eaten. It >> > will still cause damage to the small intestines, but your cousin may be >> one >> > of those like few who really doesn't suffer the agonizing symptoms. >> Avoiding >> > gluten is still a must because continued use of gluten will have >> unpleasant >> > long term effects from malabsorption due to the damaged villi in the >> > intestines. So you are correct on this! Encourage your cousin not to >> cheat >> > on the diet! I could imagine how tempting it would be to cheat if you >> didn't >> > experience the pain! lol >> > >> > Good luck with your diet! >> > >> > On Wed, Dec 3, 2008 at 6:51 PM, Penelope Schneider >> > <tuba.gypsie <tuba.gypsie%40>>wrote: >> > >> >> Hey all! >> >> >> >> Is maltodextrin safe for gluten intolerance? I remember reading about >> >> it >> >> somewhere, but where I don't remember. And what is the connection >> between >> >> maltodextrin and dextrin? >> >> >> >> Also, I have a question about celiac disease. My cousin and I both are >> >> celiacs, and I heard her talking with her friends about her celiac >> >> disease. >> >> She said that it would take a lot of gluten to actually do damage to >> her. >> >> Now, I've always been under the impression that even if you don't feel >> any >> >> symptoms from ingesting gluten, it still wreaks havoc on your small >> >> intestine if you have celiac disease. Which is true? >> >> >> >> Pennie >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 That is horrible! I'm sorry your not able to go to the good doctor anymore. I hope your situation improves soon so you can get back to him. I went through the testing fiasco too. All the test where negative. I literally could not eat though. I kept regurgitating my food and it was getting worse. I put myself on the diet and I felt better and I was able to keep food down finally! I told many doctors I don't care what you think and maybe it is all in my head, but I feel better and that's what matters! The doctor I'm with now did biopsies and did extensive tests on the biopsies and he was the first to actually confirm the diagnosis! Before he even did the test we had a nice conversation in which he told me a diagnosis isn't necessary. I'm on the diet, I've been on the diet for years now, and I feel better, so regardless what the test show, I should stick to the diet because it's working! He's the first doctor in my life who didn't dismiss symptoms, call me crazy, and shove pills at me! If I lost my insurance I just wouldn't go to a doctor! I did that for years! I fired my doctors and took charge of my own health! Sometimes you have to do that! I have a lot of info here about holistic treatments for Hashimoto's disease because my aunt has that and no insurance. (I am a certified holistic health practitioner so I do no a little more than random info on the net. lol) I've been reorganizing my office so it may take me a few days to find it all, but I will e-mail it as so as I do and you can decide if you want to try any of the recommendations or not. Best wishes of health and good medical care to you and your family! Jae On Mon, Dec 15, 2008 at 10:09 AM, Angela McBride <amcbride3wrote: > Jae (and everyone else), > > Thanks for the supportive comments. Yes, in fact, we did indeed have > Grandpa tested for celiac disease, and the test came back negative. > BUT, I do not know what test they did, and as I understand it, some > tests are more sensitive than others. I do know that he did not have > an endoscopic biopsy. I also know that Dr. Dimwit, as my aunt and I > call him, dismissed his other symptoms as well, and by the time he saw > an oncologist, he was in Stage 4 cancer. Part of that is because it > was a very aggressive cancer, and part of that is that Dr. Dimwit > totally ignored many symptoms. > > OK, enough ranting there. To answer your question about changes in > symptoms during pregnancy, I really can't answer that. Since I have > my own Dr. Dimwit, and did not know that I was pregnant until about 7 > months along. I knew something was wrong - I was sick a lot, which > was dismissed as " the bug that's going around " . I was very tired - > dismissed as " working too hard " . The weight gain - " your metabolism > slows down at 30. " (Um, not THAT slow!) The weird moving around in > my stomach - " trapped gas " . I missed a few periods, but every time I > got concerned and decided to take a pregnancy test, I started bleeding > the next morning. It turned out that I had placenta previa, which is > very dangerous for both baby and mommy. I had an emergency c-section > a month after finding out I was pregnant, and nearly hemorrhaged in > the process. Yet another reason for anemia. > > After struggling with a number of postpartum problems (and a preemie > baby with colic, which I later found out may have been helped if I had > been on a GF diet), I finally found a good doctor who quickly figured > out that I had Hashimoto's disease (thyroid), celiac disease, and > adrenal/cortisol issues. We're still working out the bugs of my > treatment, but it's really nice to know that it's not all in my head. > Unfortunately, when I was laid off a few months ago, I lost the > insurance to pay for him. I went to the doctor at our new clinic a > few weeks ago, and guess what? They wanted to shove antidepressants > at me - but not my very needed thyroid medicine. And dismissed the GF > diet as " the latest Oprah fad. " Oy. > > > On Sun, Dec 7, 2008 at 1:47 PM, Jae Jones <recyclednew<recyclednew%40gmail.com>> > wrote: > > There is also a rare form of celiac in which the anemia does not get > better > > on the gluten free diet. I had my iron tested last month and it's still > > extremely low. My doctor started discussing with me the possibility of > have > > this rare form and he's doing more test. I also have chronic pancreatitis > > which causes malabsorption problems, so in my case it could be continuing > > because of the malabsorption. I've often wondered though about how much > my > > diet adversely affected my health. Many of my symptoms where overlooked > and > > ignored for most of my life. Even after I brought up celiac with 3 > different > > gastroenterologist it still took them over 2 years to do any test. > Finally > > one doctor decided to do a biopsy during a routine endoscope, but I had > been > > gluten free for over 2 years so of course the biopsy was normal! It's so > > frustrating when you have severe symptoms and chronic pain and the > doctors > > refuse to listen to you or refer you to a psychologist because it's all > in > > your head! Since birth my mother had said to many doctors there is > something > > seriously wrong with my child and your not going to figure it out until > the > > autopsy! I was starting to believe that would be the case until I went > > gluten free and I stopped vomiting, the rash and lumps went away, the > > abdominal cramps stopped, and the constant migraines stopped. I don't get > > sick as often either. Before I would catch a cold and I'd be sick for > > months! I almost always had a sinus infection. I always had some kind of > > infection! If I got cut or bruised it took forever for me to heal. I'm > still > > a slow healer because of the anemia but it's not as bad. When I was a kid > in > > school they had a routine exam once and this was around April or may. > They > > started all kinds of investigations on abuse because I had a bruise that > > didn't heal yet from when I had fallen (at the school) in the November > > before! When there is constant issues, no matter how insignificant they > > seem, they should be tested. I believe doctors, for the most part, are in > > the business of keeping people sick! Especially when it comes to simple > > dietary changes being the only prescription they can give! How much money > > can they make off your diet? In some places you can get a prescription > for > > gf food, but unfortunately in the US you can't! > > > > Angela, did you develop any rashes or new symptoms when you became > pregnant? > > Often times the change in hormones can trigger new symptoms. I'm glad > they > > where able to save you. That would have been a shame. At least your doing > > better now with the gf diet. Sorry about your grandpa. They really should > > have tested him because it's rare for men to have anemia, and it's > usually a > > lot worse for them. Same with osteoporosis...it's a lot worse for men! > > Thanks for sharing your story. Not many celiacs talk about anemia. > > > > On Sun, Dec 7, 2008 at 11:34 AM, Angela McBride <amcbride3<amcbride3%40gmail.com>> > wrote: > > > >> I'm a silent celiac too. The only symptom I had was severe anemia > >> that didn't respond to iron supplements. This was dismissed by > >> doctors because I'm female and vegetarian. Oh, and I nearly > >> hemorrhaged to death during childbirth. But since my grandpa had the > >> same problem with anemia, I wondered if it was something else. Other > >> family members also have anemia, but not as severe as we did. We lost > >> Grandpa last year to a very aggressive cancer. Anemia was his only > >> symptom for a long time. That made me really start questioning what > >> was going on. > >> > >> When I finally started seeing a holistic osteopath for this and a > >> variety of other issues (thyroid disease, mostly) he tested for celiac > >> disease. Since I'm very overweight (thanks, thyroid!) that came as a > >> shock! But after reading more about silent celiac disease, a lot of > >> things made sense. > >> > >> Six months after starting a gluten-free diet, I've seen a lot of > >> positive changes. I guess I wasn't as silent as I thought; I just > >> wasn't understanding my body! > >> > >> -I've had lumps on the back of my neck as long as I can remember. > >> These were swollen lymph nodes. Doctors always dismissed these as a > >> mild infection. (For 35 years???) One month gluten free, and they > >> were gone. Hmm, could a gluten-free diet have kept my grandpa around > >> for a few more years? > >> > >> -My migraines pretty much went away - except for the few instances > >> where I've been cross-contaminated or otherwise accidentally ingested > >> gluten. > >> > >> -My itchy, dry skin got better. > >> > >> -My face isn't as swollen. > >> > >> It's hard to follow a gluten free diet, but it is so worth it! One > >> friend gave me a piece of advice: WHEAT=POISON=LYMPHOMA. That is > >> quite a motivator!! > >> > >> Good luck, > >> Angela > >> > >> > >> On Wed, Dec 3, 2008 at 10:39 PM, Jae Jones > >> <recyclednew <recyclednew%40gmail.com><recyclednew% > 40gmail.com>> > > >> wrote: > >> > maltodextrin does not contain gluten. Most people think barley malt, > >> which > >> > does contain gluten, when they see maltodextrin. It is safe though. I > >> don't > >> > know about the connection with dextrin. I'm sure I've read about it, > but > >> I > >> > can't recall anything right now. If my memory is correct, maltodextrin > >> comes > >> > from corn. > >> > > >> > As for celiac disease, you are correct that the gluten will cause > damage > >> > even if you don't notice the symptoms. Growing up, I always had to > have > >> my > >> > toast burnt and I couldn't tolerate any kind of plain bread products. > >> Even > >> > though I didn't make the connection (nor did a couple dozen doctors or > >> > my > >> > mother who's a nurse!) somehow, my subconscious mind knew how to cope > >> with > >> > it. The burnt parts are essentially charcoal, which draws toxins out > of > >> the > >> > body. So I was eating the antidote with the poison, which limited my > >> > symptoms. After going gluten free though I became hypersensitive, as > >> > many > >> > do! Bread baking made me sick. After a year or so, I wasn't as > sensitive > >> and > >> > my family could happily enjoy their wheat breads without me getting > >> > sick, > >> > unless of course I accidentally ingested some of it! Most people seem > to > >> > have this type of an experience. There are some though who never had > any > >> > symptoms, and don't really notice the gluten when accidentally eaten. > It > >> > will still cause damage to the small intestines, but your cousin may > be > >> one > >> > of those like few who really doesn't suffer the agonizing symptoms. > >> Avoiding > >> > gluten is still a must because continued use of gluten will have > >> unpleasant > >> > long term effects from malabsorption due to the damaged villi in the > >> > intestines. So you are correct on this! Encourage your cousin not to > >> cheat > >> > on the diet! I could imagine how tempting it would be to cheat if you > >> didn't > >> > experience the pain! lol > >> > > >> > Good luck with your diet! > >> > > >> > On Wed, Dec 3, 2008 at 6:51 PM, Penelope Schneider > >> > <tuba.gypsie <tuba.gypsie%40> <tuba.gypsie% > 40>>wrote: > >> > > >> >> Hey all! > >> >> > >> >> Is maltodextrin safe for gluten intolerance? I remember reading about > >> >> it > >> >> somewhere, but where I don't remember. And what is the connection > >> between > >> >> maltodextrin and dextrin? > >> >> > >> >> Also, I have a question about celiac disease. My cousin and I both > are > >> >> celiacs, and I heard her talking with her friends about her celiac > >> >> disease. > >> >> She said that it would take a lot of gluten to actually do damage to > >> her. > >> >> Now, I've always been under the impression that even if you don't > feel > >> any > >> >> symptoms from ingesting gluten, it still wreaks havoc on your small > >> >> intestine if you have celiac disease. Which is true? > >> >> > >> >> Pennie > >> >> > >> >> Quote Link to comment Share on other sites More sharing options...
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