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Mom Of 15 Month Old With Celiac Disease

SDevanney

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SDevanney Newbie
SDevanney
Posted

On Thursday, July 19th we were told our 15 month old son suffers from celiac disease. (blood test came back poitive) Can not get an appointment with GI Specialist until 9/27/07. What do I do in the mean time?

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Nic Collaborator
Nic
Posted

Hi, this is a tough one because the GI will probably want to do a biopsy which means you would have to keep him on gluten until then. The biopsy will only come up positive if he is eating gluten. Unless you are not willing to do the biopsy and are going to rely on the blood work for your dianosis which a lot of people do. Maybe you could call the GI office and explain that your son tested positive through blood and since your appointment isn't for another 2 months, what do they want you to do. Sorry I can't offer more.

Nicole

SDevanney Newbie
SDevanney
Posted
  • Author
Hi, this is a tough one because the GI will probably want to do a biopsy which means you would have to keep him on gluten until then. The biopsy will only come up positive if he is eating gluten. Unless you are not willing to do the biopsy and are going to rely on the blood work for your dianosis which a lot of people do. Maybe you could call the GI office and explain that your son tested positive through blood and since your appointment isn't for another 2 months, what do they want you to do. Sorry I can't offer more.

Nicole

Thanks for the advise.

kbtoyssni Contributor
kbtoyssni
Posted

If the blood test is positive, then he has celiac. There is no reason to do a biopsy unless there's something in addition to celiac that the doctor wants to look for. Many in the medical community consider a biopsy the "gold standard" of diagnosis, but you really don't need one if you have positive bloodwork. And a biopsy can often come back negative, too, especially in young children who haven't had enough time eating gluten to develop lots of intestinal damage (which is a good thing!). At this point you have a choice to make: keep him on gluten and wait for the biopsy or go gluten free now and start the healing process. Some people need the biopsy and its additional proof that he/she has celiac in order to 100% commit to a gluten free diet. If you're someone who is satisfied with the proof you already have, then I see no reason for a biopsy.

shayesmom Rookie
shayesmom
Posted
On Thursday, July 19th we were told our 15 month old son suffers from celiac disease. (blood test came back poitive) Can not get an appointment with GI Specialist until 9/27/07. What do I do in the mean time?

In a 15 month old, I would think that positive bloodwork would suffice. The GI will most certainly want to biopsy to verify the bloodwork (though I don't really see the sense as the bloodwork is highly specific to this disease).

Considering your son's age....you have to look at the symptoms he's having and make your determination from there. How sick is he? What has led you down this road of testing? And how quickly do you want this resolved? Can your son (and you) wait another few months in order to have two doctors concur that celiac disease is the problem?

I was once in shoes similar to yours with my dd. But my dd's bloodwork came back negative and we declined the biopsy. We opted to give the diet a try as it was the safest and least invasive way to go. The results were amazing. And I can honestly say that I wanted to kick myself in the rear for not finding out about this sooner. Up until then, I never knew what Celiac was...much less suspected it was a problem! When I think of all the pain my dd must have been in....and then all of the hedging the doctors were doing and how they discouraged me from even trying the diet. It's infuriating.

In any case, this decision is a very personal one to make. Don't let anyone pressure you into anything (be they doctor, friend or relative). Follow your own heart and mind. You know what is best for your son and I'm sure that you'll uphold what is in his best interest.

amberleigh Contributor
amberleigh
Posted

I'm sorry to hear that (((HUGS))). I know most of their diet at that age is GLUTEN as I have 2 daughters around that age.

I found out I have celiac disease a bit over a week ago and we decided to have the kids tested even though they don't really show symptoms for it. Our Ped GI does the bloodwork and then if that is positive, they do the scope as well. My husband doesn't really want to put them under anesthesia, but the nurse I talked to said that since it's such a restrictive diet, they like to be 100% sure with the scope. It makes sense to me and I agree with it but we'll see what we do when we actually get to that point (our appt isn't until 8/15).

When my blood test results came back positive, my GI told me to continue eating "normally" until the scope, which I did. Then when the scope confirmed it, I went gluten-free. However, I wasn't all *that* sick...so I guess it depends on how sick your kiddo is.

Hope that helps a little and prayers to you and your son!

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