Re: Question about initial consult with pediatric GI re: celiac

September 2, 2004

First of all, I agree 100% about not doing the gluten challenge.

Second, I would still go to the appointment. You could at least explain

what happened when you introduced wheat and how she improved on a strict

gluten free diet. Maybe he can give you a game plan for the future. He

could test and see if she carries one of the celiac genes (you could

also have this done through Enterolab doing a cheek swab test if you

want to avoid needles). Since it will have been four months since she's

had gluten, and then it sounds like she didn't have much even when she

did eat it, I don't think even Enterolab could give you accurate results.

Overall, I think a second opinion is always a good idea. If he insists

on a gluten challenge though, I'd switch doctors.

Good luck,

Elaine

mum2sparky wrote:

> When I told our ped about it, he referred us to a pediatric GI and

> that appointment is in October. We are unwilling to do a gluten

> challenge on her at this point. Given this, is there any point in

> still going to the initial consult? Is there anything else they can

> look at or do? I was thinking maybe they would still want to check

> out allergy issues, get some background, maybe advise us on testing

> her in the future. Spouse feels like they will probably just be

> irritated we don't want to do the gluten challenge and kind of won't

> see the point of us coming. Now I am starting to wonder too.

>

> What do you guys think? Thanks!

September 2, 2004

Did the pediatrician recomend the gluten challenge? If they didn't it's not a player in this decision making process. Didn't the advice came from someone in this group?

If you think about it, when the pediatrician referred you to the pedi GI she recognized that she was in over her head with possible CD in a baby.

If nothing else, going to the Pedi GI Dr will establish a relationship with this specialist. And if she directs a gluten challenge she should monitor the child during that period. I'd keep a diary for that, too.

Do the diary, provide concise info and if anyone else in the family has CD or DH. You'll be giving the GI a wealth of logical info that she can use to make decisions about the care of your child.... even if that turns into do nothing for now.

mum2sparky wrote:

Yes, it's me again. (o: Your patience is appreciated. We're have a bit of a disagreement in the Mum2sparky household and your opinions would be very helpful. A quick recap - our daughter, who turned 1 in July, showed a very violent intestinal reaction to wheat the few times we tried her on it (which would have been in the 11-12 month range) and has been strict GF (with good results) ever since.When I told our ped about it, he referred us to a pediatric GI and that appointment is in October. We are unwilling to do a gluten challenge on her at this point. Given this, is there any point in still going to the initial consult? Is there anything else they can look at or do? I was thinking maybe they would still want to check out allergy issues, get some background, maybe advise us on testing her in the future. Spouse feels like they will

probably just be irritated we don't want to do the gluten challenge and kind of won't see the point of us coming. Now I am starting to wonder too.What do you guys think? Thanks!

September 2, 2004

Did the pediatrician recomend the gluten challenge? If they didn't it's not a player in this decision making process. Didn't the advice came from someone in this group?

If you think about it, when the pediatrician referred you to the pedi GI she recognized that she was in over her head with possible CD in a baby.

If nothing else, going to the Pedi GI Dr will establish a relationship with this specialist. And if she directs a gluten challenge she should monitor the child during that period. I'd keep a diary for that, too.

Do the diary, provide concise info and if anyone else in the family has CD or DH. You'll be giving the GI a wealth of logical info that she can use to make decisions about the care of your child.... even if that turns into do nothing for now.

mum2sparky wrote:

Yes, it's me again. (o: Your patience is appreciated. We're have a bit of a disagreement in the Mum2sparky household and your opinions would be very helpful. A quick recap - our daughter, who turned 1 in July, showed a very violent intestinal reaction to wheat the few times we tried her on it (which would have been in the 11-12 month range) and has been strict GF (with good results) ever since.When I told our ped about it, he referred us to a pediatric GI and that appointment is in October. We are unwilling to do a gluten challenge on her at this point. Given this, is there any point in still going to the initial consult? Is there anything else they can look at or do? I was thinking maybe they would still want to check out allergy issues, get some background, maybe advise us on testing her in the future. Spouse feels like they will

probably just be irritated we don't want to do the gluten challenge and kind of won't see the point of us coming. Now I am starting to wonder too.What do you guys think? Thanks!

September 2, 2004

Did the pediatrician recomend the gluten challenge? If they didn't it's not a player in this decision making process. Didn't the advice came from someone in this group?

If you think about it, when the pediatrician referred you to the pedi GI she recognized that she was in over her head with possible CD in a baby.

If nothing else, going to the Pedi GI Dr will establish a relationship with this specialist. And if she directs a gluten challenge she should monitor the child during that period. I'd keep a diary for that, too.

Do the diary, provide concise info and if anyone else in the family has CD or DH. You'll be giving the GI a wealth of logical info that she can use to make decisions about the care of your child.... even if that turns into do nothing for now.

mum2sparky wrote:

Yes, it's me again. (o: Your patience is appreciated. We're have a bit of a disagreement in the Mum2sparky household and your opinions would be very helpful. A quick recap - our daughter, who turned 1 in July, showed a very violent intestinal reaction to wheat the few times we tried her on it (which would have been in the 11-12 month range) and has been strict GF (with good results) ever since.When I told our ped about it, he referred us to a pediatric GI and that appointment is in October. We are unwilling to do a gluten challenge on her at this point. Given this, is there any point in still going to the initial consult? Is there anything else they can look at or do? I was thinking maybe they would still want to check out allergy issues, get some background, maybe advise us on testing her in the future. Spouse feels like they will

probably just be irritated we don't want to do the gluten challenge and kind of won't see the point of us coming. Now I am starting to wonder too.What do you guys think? Thanks!

September 2, 2004

Maureen, I wouldn't do a gluten challenge with the child. I have read that a gluten challenge can provoke other autoimmune diseases, and in one case I read about it provoked seizures.

I would go to the pediatric GI and see if he has any recommendations for your daughter aside from a gluten challenge. He might recommend a celiac gene test for instance.

Jo Anne

Question about initial consult with pediatric GI re: celiac

Yes, it's me again. (o: Your patience is appreciated. We're have a bit of a disagreement in the Mum2sparky household and your opinions would be very helpful. A quick recap - our daughter, who turned 1 in July, showed a very violent intestinal reaction to wheat the few times we tried her on it (which would have been in the 11-12 month range) and has been strict GF (with good results) ever since.When I told our ped about it, he referred us to a pediatric GI and that appointment is in October. We are unwilling to do a gluten challenge on her at this point. Given this, is there any point in still going to the initial consult? Is there anything else they can look at or do? I was thinking maybe they would still want to check out allergy issues, get some background, maybe advise us on testing her in the future. Spouse feels like they will probably just be irritated we don't want to do the gluten challenge and kind of won't see the point of us coming. Now I am starting to wonder too.What do you guys think? Thanks!

September 2, 2004

I would definitely go to the appointment because if the GI doc is

good, you should be able to learn a lot about watching for other food

sensitivities, warning signs of growth delay, your child's baseline

condition, appropriate nutrition guidelines (maybe get a referal for

these) and whatever other questions keep you awake at night.

Our family has vetoed the biopsy at this point in time for our little

celiac (His Dad: " He's healthier on a gluten-free diet. End of

discusion. " ) but there are still lots of other things I need know from

a GI specialist. Right now we're working on re-introducing lactose to

his diet after 7 months GF and nearly 4 years lactose-free. Wish us luck!

Maureen

> Yes, it's me again. (o: Your patience is appreciated. We're have a

> bit of a disagreement in the Mum2sparky household and your opinions

> would be very helpful. A quick recap - our daughter, who turned 1 in

> July, showed a very violent intestinal reaction to wheat the few

> times we tried her on it (which would have been in the 11-12 month

> range) and has been strict GF (with good results) ever since.