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Questions To Ask The Pediactric Gi?

kathy1

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kathy1 Contributor
kathy1
Posted

my son was recently dx via blood test. (I dont know what kind). The pediatrician said that although he tested postive,since he has no symptoms, he does not need to go on the gluten-free diet.His said that it so hard to get kids to go along with the diet, it would be ok to skip it since he has no symptoms.

I have scheduled a consultation with a ped GI in a few weeks. I want to hear from a Dr that treats this disease in children. Do you have any suggestions on what questions I should ask the Ped GI? Should I request further testing? my son is 8 yrs old and has no symptoms.He is growing and thriving, in the 85th percentile growth wise.

I'm not sure what to expect from the ped GI, but I am hoping he will shed some more light on this.

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lovemyboy Rookie
lovemyboy
Posted
my son was recently dx via blood test. (I dont know what kind). The pediatrician said that although he tested postive,since he has no symptoms, he does not need to go on the gluten-free diet.His said that it so hard to get kids to go along with the diet, it would be ok to skip it since he has no symptoms.

I have scheduled a consultation with a ped GI in a few weeks. I want to hear from a Dr that treats this disease in children. Do you have any suggestions on what questions I should ask the Ped GI? Should I request further testing? my son is 8 yrs old and has no symptoms.He is growing and thriving, in the 85th percentile growth wise.

I'm not sure what to expect from the ped GI, but I am hoping he will shed some more light on this.

I'm curious why he was tested? Its not usually a routine test is it? Probably you would want to get a bioposy done.

kathy1 Contributor
kathy1
Posted
  • Author
I'm curious why he was tested? Its not usually a routine test is it? Probably you would want to get a bioposy done.

My son was tested because my husb was just DX in dec. My mother in law has it also. So i decided it was best to have my son tested. Is a bioposy rough in a child?

2Boys4Me Enthusiast
2Boys4Me
Posted

My now 6 year old son had a biopsy in August 2005. He was 5 3/4 at the time. From what I understand, it was a piece of gluten-free cake. He and the nurse went off to the surgery, he was given a general anaesthetic, and an hour later he was back in the ward eating a popsicle. He had no problem with it, didn't complain about a sore throat or anything and was under nurse's orders to watch tv for the rest of the day, no riding bikes or using his imagination or anything.

Keep your son eating gluten until after the biopsy. My son's report said that certain areas of villi were normal and others showed "severe villous atrophy consistent with Celiac Disease".

For what it's worth, my son's only symptom was anemia. You don't have to have the more obvious GI symptoms to have celiac disease. Also, I am sure that other posters will point out that just because you are symptom free on the outside doesn't mean you aren't doing damage on the inside. I tell people who ask about his lack of symptoms that it's like smoking: you can't see the damage it's doing, but it's there on the inside.

kathy1 Contributor
kathy1
Posted
  • Author
My son's report said that certain areas of villi were normal and others showed "severe villous atrophy consistent with Celiac Disease".

For what it's worth, my son's only symptom was anemia. You don't have to have the more obvious GI symptoms to have celiac disease. Also, I am sure that other posters will point out that just because you are symptom free on the outside doesn't mean you aren't doing damage on the inside. I tell people who ask about his lack of symptoms that it's like smoking: you can't see the damage it's doing, but it's there on the inside.

But the biopsy will show if there is any damage correct? If the biopsy comes back normal, then does that mean no damage and no signs of active celiac disease?

I understand that I should request a biopsy on my son. If it shows damage then he goes on a gluten-free diet.

What is it shows "normal". can he not go gluten-free?

sorry if I am repeating myself!!

chrissy Collaborator
chrissy
Posted

kathy, i have 3 girls just diagnosed recently diagnosed. we put them gluten free on jan.1 . 2 of my girls have had biopsies, one had the endo for reflux, the other had the endo because she had a positive blood test. both girls had negative biopsies, although one did havae one area of raised intrepithelial lymphocytes (SP?). my youngest daughter has not had a biopsy. the doc says that they probably do have damage because their tTg levels are raised.(even though he didn't see damage) i stayed in the room and watched the whole procedure when one of the girls had a biopsy----if you would like me to tell you about it, let me know.

christine

2Boys4Me Enthusiast
2Boys4Me
Posted
But the biopsy will show if there is any damage correct? If the biopsy comes back normal, then does that mean no damage and no signs of active celiac disease?

I understand that I should request a biopsy on my son. If it shows damage then he goes on a gluten-free diet.

What is it shows "normal". can he not go gluten-free?

sorry if I am repeating myself!!

Not necessarily. If the damage is like my son's - only in certain areas, they might not get a sample of the damage. Depends on how many samples they take. Check on the blood tests they used and maybe send a pm to KaitiUSA or Nini. Kaiti seems to be quite well informed on blood test vs biopsy and often says that a biopsy can confirm the diagnosis of celiac disease, but not deny it. I think she uses the phrase the biopsy can rule Celiac IN but not OUT. Certain blood tests (not sure which ones) have a very high specificity rate for celiac disease. Nini has a young daughter diagnosed for longer than my son, she probably has better info than me.

The way I understand it, is perhaps the biopsy would be negative because he hasn't had enough villous atrophy to show up in the samples. If is blood tests are postive, that's a pretty good indication he may have celiac disease.

My husband, other son and I were all tested and they all came back negative. We are supposed to be tested again every couple of years or immediately if we start having symptoms.

The result of the blood test my son had was represented as a ratio. Anything less than 1 : 2.5 was negative. Ty's was 1 : 650. I'd guess that's a pretty strong positive. I'll know more after the follow-up in March when I'll get a better look at the chart.

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kathy1 Contributor
kathy1
Posted
  • Author
kathy, i have 3 girls just diagnosed recently diagnosed. we put them gluten free on jan.1 . 2 of my girls have had biopsies, one had the endo for reflux, the other had the endo because she had a positive blood test. both girls had negative biopsies, although one did havae one area of raised intrepithelial lymphocytes (SP?). my youngest daughter has not had a biopsy. the doc says that they probably do have damage because their tTg levels are raised.(even though he didn't see damage) i stayed in the room and watched the whole procedure when one of the girls had a biopsy----if you would like me to tell you about it, let me know.

christine

If you wouldnt mind explaining,,,,i would like to know what to expect. i dont know if the dr will even recommend the biopsy, but I think I would feel better with him having it. I just don't want to tramatize him at the same time.

thanks to everyone for your advise....you have provided me with much useful info. i have already requested a copy of my sons blood test results, so when I get them, I will pm kaitiusa or nina as suggested.

Thanks again

Guest nini
Guest nini
Posted

Feel free to PM me any time... the thing that stuck out in your comment is that the Dr. said it would be difficult for a child to accept the diet. I don't agree. There are so many things that are naturally gluten free that kids can have and there are some great alternatives as well. I think my daughter is extremely well adjusted on the diet. I've asked her numerous times if she is bothered by not being able to have what other kids have, and she always says no, because I feed her such yummy stuff. And, I always make sure she's got treats for birthday parties or special occassions at school. If something is questionable, she is very good about asking first or waiting for an alternate treat. It all depends on how YOU handle it.

If you act like it is the most horrible punishment in the whole world and woe is him that he can't have what other kids have, of course it's going to be hard on him. But, if you focus on what he CAN have, and let him have goodies that are safe when he wants them (within reason of course) and feed him good healthy naturally gluten free food, he shouldn't have any problems adjusting. I think it's harder on adults to accept.

My daughter at least has symptoms if she injests gluten though, so she knows how horrible she feels if she eats it, and she doesn't want to feel that way again.

PM me or e-mail me any time with questions. I am admittedly opinionated about the fact that I think gluten isn't good for anyone, especially someone with a predisposition to Celiac, so, take that for what it's worth!

Guest Lucy
Guest Lucy
Posted

My son who is diabetic, and that make anethesia hard, handled the endo like a champ. He was a little hoarse for a day,sleepy, and had a gassy stomach, but no pain really. We thought it would be a much bigger deal than it was.

He also handles the diet very well. I think it is easier the younger they are. They don't know the difference. I would hate to have my 6 year old go on it. I will find out this summer though. We are doing the testing on her this summer.

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