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G Tube For Celiacs Kids

angigz32

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angigz32 Newbie
angigz32
Posted

:huh: 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)

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key Contributor
key
Posted

Did they do all the blood tests for celiac? How did they come out? My husband is a physician and is at the National Institute of Health in MD. Anyway, he just heard in a lecture that the most difinitive test for celiac disease was the new blood tests and not the biopsy. My son hasn't been diagnosed officially, but we have been doing the diet for over three weeks and he has changed dramatically. Wasn't eating before, now he is always hungry, he was fussy before and so happy all the time now. His weight was in the negative 10th percentile and we haven't taken him back yet to the ped. doctor, but he has gained weight we think. No more pooping six times a day and a sore bottom. Normal stools.

What are your son's other symptoms? The ped. GI mentioned putting a G-tube in my son too. Just to see if he gained weight. I didn't think it was a great idea when they didn't know why he wasn't gaining weight. My son had been eating at 9 months, but once the diarrhea got so bad and he was so sick from the gluten, he quit eating as well. Looking back now we know he was actually choosing not to eat gluten foods for the most part, but he would still get some gluten and then be sick. At one point he was choosing to eat only Yoplait yogurt and during those two weeks he gained a pound and was doing good, but then he started back eating some gluten foods and all his symptoms returned of course.

I guess if your son isn't eating anything, then a G-tube would be necessary, but if you feel in your heart that he has celiac, then I personally would just do a gluten free diet for a while and see how he responds to it. I know there are other times when they really can't find out why a child doesn't grow and they feed them with a G-tube, but hopefully that isn't the case with your child and the problem can be resolved.

Take care!

MOnica

angigz32 Newbie
angigz32
Posted
  • Author

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.

angigz32 Newbie
angigz32
Posted
  • Author

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.

Merika Contributor
Merika
Posted

It seems that if his blood test is positive for celiac, then he has celiac. Right???? The gene test is nice, and somewhat experimental, and IMO irrelevant if the blood test is positive.

Breastfeeding is wonderful and it's fantastic that you did as long as you did. I'm sure that helped him - it is very easy to digest and soothing to the stomach. Also, though, (for next time?) you need to be gluten-free while breastfeeding, if you have a celiac child.

Merika

angigz32 Newbie
angigz32
Posted
  • Author

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!!!! :)

key Contributor
key
Posted

I don't know what you have tried feeding your son, but I know that dairy doesn't agree with Celiac kids. I know they say he doesn't have it, but I guess I was thinking that if you didn't give him any dairy for a few weeks. You said he won't eat at all, but I know at first when my son was sick and on a diet that contained any gluten, he didn't eat well at all. But he would eat soy yogurt. The WholeSoy brand. Also I buy the Organic Soy Toddler formula for him and mix it with the Very Vanilla Silk soymilk. He likes this out of a bottle, but I too breastfed up until recently and it took me over a month to wean him and he had never taken a bottle, but I felt he needed to be on one since he only weighed 17.5pounds at 13 months. Anyway, having him off dairy and gluten for even just a week made him want to start eating and he eats baked potatoes now, gluten-free pancakes, well all sorts of stuff now that he doesn't feel sick.

Someone has told me recently that in children under 2 years old, it is hard to get accurate results on allergies, celiac, etc. I don't know. These are all just a thought. I know you must be so desperate. I was so sad I quit breastfeeding my son. I was adviced to, because of his weight. It didn't have anything to do with it though. He got sicker once I quit.

Take care,

MOnica

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Merika Contributor
Merika
Posted

Your doc said the gene test was the final say? Nope, no way, sorry gotta disagree, no no no no no! The gene test is interesting and *can be* indicative of whether or not someone *might* get celiac in their lifetime, but it *does not* say whether someone *has* celiac.

The full blood panel test is THE test, somewhat debated by the endoscopy.

Merika

angigz32 Newbie
angigz32
Posted
  • Author
:) 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.
Guest Lucy
Guest Lucy
Posted

I don't want to scare you, and I may be totally wrong, but before my son was diagnosed with diabetes (just 2 weeks after his 2nd birthday) he was losing weight and vomitted if he drank milk, or dairy products. This was happening for a couple of months, before he went into ketosis and was in intesive care.

I would have his blood sugar tested after not eating for 2 hours. It is a very very simple test.

My son has celiac also, but now that we have his diabetes figured out , he can drink milk products again.

Good luck.

mommida Enthusiast
mommida
Posted

I agree with Merika's post, but I feel the need to add that if the genetic test was negative, you still can not rule out Celiac. Considering every test has a 30% chance of error. The genetic test was just for the known Celiac genes. Not every gene has been isolated, and genetic testing is still new.

Laura

cdford Contributor
cdford
Posted

By the way, someone commented that he did not have celiac any more. You do not outgrow celiac disease. The symptoms can mediate and will often appear to disappear for a few years as the child gets older and especially during the teen years, but the damage is quietly continuing and will rear its ugly head again in a few years, usually in the late twenties or early thirties. By that time, it is like starting over again. Be careful of anyone who tries to tell you that you can outgrow celiac disease.

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