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angigz32

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About angigz32

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  1. My son was failure to thrive and still is..... he has a feeding tube in his stomach. Long story Please look at his jornal on www.caringbridge.org/co/zack..... all I can say is still we are trying to figure out what is going on. You name it and we tried it. Just a long journey for myself and son. We go to the GI doc Oct 29, 2008 and have a test done for villi sence now we can look for it, because he is trying more foods. Gene test was neg, for celiac. But doc says since he never ate before we couldn't find villi. Oh blood test came out positive for celiac sprue (a small perctage). He eat some foods and is on a pre disgested food at night through feeding tube. I've heard my son's jorney to find out what is going on is one in a few? Angie
  2. Thank You, I did want someone to tell me that was wrong. Because thats what I thought the gene test was not the true answer. My son ate yogurt and soy products and got sick (vomiting). Also Milk he vomites. He was on ELECARE formala medicated pre digested food. And now he is on Kindercal with fiber.
  3. The Gastro Doc said "The gene test was the true test" So he tells me he doesn't have Celiac. Yes, if I would have known that my son had Celiac, which now they say he doesn't because of the Gene test, I would have not ate gluten and breast fed. No more baby's my tubes are tied. Thank You for input!!!!
  4. You need to see a gastrologist if you havent already. My son is the one with the G tube in his stomach. A sign of a hard stomach is he is not digesting, And if your kid is staying up and crying. I would take him to the hospital. Sorry, from my experience that is a very bad sign. I't could also mean he has a bowel problem. JUST MY OPION.
  5. My son was diagnosed with Celiac at 17 months. At 5 months he ate sweet potatoes or carrots, vanilla custard (baby foods). Than just all of a sudden he cryed alot and they said he had colic. I thought that was over at 3 months. Than they said he had the stomach flu, like twice a month. So at 17 months I still breast fed Because it was the only food that didn't make him sick. Well I was over whelmed it seemed like all I was doing was Breast feeding but he wasn't gaining weight. So at 17 months he was only 18pds. Thats when I said "I am tired" I can't keep breast fed him he isn't gaining weight. I can't give him baby food or chopped natural food. He just didn't want to eat. The doc said" He had fat in his bowel movement" In his blood they just said "He had Celiac sprue". The gene test from his blood was negative. The feeding clinic says "He doesn't trust food, and food hurt him so thats why he doesn't eat" Yes, He has been on a gluten free diet. But he doesn't eat. So I cannot tell if it works.
  6. My son was diagnosed with Celiac at 17 months. At 5 months he ate sweet potatoes or carrots, vanilla custard (baby foods). Than just all of a sudden he cryed alot and they said he had colic. I thought that was over at 3 months. Than they said he had the stomach flu, like twice a month. So at 17 months I still breast fed Because it was the only food that didn't make him sick. Well I was over whelmed it seemed like all I was doing was Breast feeding but he wasn't gaining weight. So at 17 months he was only 18pds. Thats when I said "I am tired" I can't keep breast fed him he isn't gaining weight. I can't give him baby food or chopped natural food. He just didn't want to eat. The doc said" He had fat in his bowel movement" In his blood they just said "He had Celiac sprue". The gene test from his blood was negative. The feeding clinc says "He doesn't trust food, and food hurt him so thats why he doesn't eat" Yes, He has been on a gluten free diet. But he doesn't eat. So I cannot tell if it works.
  7. Been away for awhile and still do not know what is all wrong with my son. So just wanted to know if there is any kids out here, with a feeding tube in there kids stomach. UPDATE: Still has celiac sprue in bowel movement and blood test. Gene test came out negative for Celiac. DOC said he NO LONGER has celiac. (Coming from a gastrology Doc)
  8. All these menu's sound great.... Hopefully my son will be able to eat all these when he gets the G tube out and starts the feeding clinc. My son is also allergic to milk and soy. I still can only get him to eat two or three bits of anything. I try to get him food he really likes and it still doesn't work. Pedisure he also got sick on. So we put him on PEPTAMEN junior, that didn't work. So the DOC put him on NEOCATE junior and that didn't work. So now he is on Elecare, it is pre digested medical food. Also my 2 yr old son just doesn't have Celiac he has something else wrong with him and we are trying to figure it out. The doc will not do more test till he gains weight. So we are going in hospital the 22nd to put a PH probe in his nose. To see how much acid it coming up than if needed they will wrap the tube going to his stomach around his stomach. I will save the menu idea's for when my son gets better. Thank You and God Bless.
  9. My son tested postive for celiac with the blood test. Also tested positve on the bowel movement. My son was also breast fed. He will only eat a couple of bits or a couple of sips of drink. He has a feeding tube in his stomach. He is 2 years and weighs 21 pds. We are in the hospital every three months for more tests. Celiac can come in two's (something else wrong) I did the mistake of not giving him gluten, before he had the biopsy and it came out negative. When he was a baby I was told he was a colicy baby or he always has a stomach virse. He is Gluten free now and still has problems with vomiting and bowelment problems. I was in the doc office once a week and now I have a nurse come to my house for 37 hrs a week. I feel every one sititation is different. Just handle it when it comes to you and pray. Take Care and God Bless. Check out my son and sign our guest book and I will keep you updated on what the docs do to my son. www.caringbridge.org/co/zack
  10. Well I haven't posted in a long time because my son is sick alot. But I feel every sitution is different and you will just have to see what happens. My son was diagnosed at 17 months. They started out with finding fat in his bowel movement, it was positive for celiac. Than they did the blood test and it was positive for having celiac. Now the small intestine came out negitive for celiac. My son fell off the charts also, he would not eat. Only maybe a couple of bits or a couple of sips. I breast fed him for 17 months. And than the doc put a feeding tube in his nose. Now he has a feeding tube in his stomach. The feeding tube saved his life, food hurt him so he wouldn't eat enough to keep him alive. We are in the hospital every three months for tests, celiac also comes in two's. You can check out my son on www.caringbridge.org/co/zack.com God Bless and Take care
  11. My son is 21months now. He weighs 21 pds. He has been Gluten free for six months. But he still would not eat. So he didn't gain weight. On friday the doc were going to send him to the hospital because he was running a fever. And having loose bowels. I don't know maybe he has a feeding problem? The doc seems to think something else is wrong. I think because of his blood work.
  12. ryebabyo Thank you you answered all my questions. The gastrologist put Zackary on the G tube. One of the test he is doing is putting him back on gluten. Because he is Gluten free now. The gastrologist put the G tube in because my son just wouldn't eat at all. It was like food hurt. But than again his intestines show no damage or nothing else wrong with his intestines.
  13. O.K how come nobody else kid has a feeding tube? My son was totallly breast fed at 17 months. And weighted 16pds and they put the G tube for feeding. He also had all the systems of celiac. I guess they just feel he has another problem. What else could he have any one know?
  14. By the way he is on ELECARE already digested medical food.
  15. A G tube is a tube that was put in my sons stomach. So he can get the nutrition, that he needs to grow. I have a machine and like a I.V. pole that holds the bag and the machine. Than the machine operates the tubeing to, 60 cc and that is what goes in my sons stomach