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Endoscopy Or Not?

Benshell

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Benshell Explorer
Benshell
Posted

I need help making a decision:

I have a 6 year old daughter who just tested positive for celiac (blood work), however has NO SYMPTOMS. Her growth, development, vitamen levels, everything is fine (perfect in fact). We are re-doing the blood work just in case their was a lab error.

The doctor wants to do an endoscopy to be sure, but feels based on the blood work levels that she is celiac. While she may not have symptoms now, she could develop the in 6 months or 6 years, its unknown.

Based on my questions below, the dr said its up to me to decide whether to do the endoscopy or not. But he usually does them just to be sure. He also said he never had a case where the blood was positive but the endoscopy negative, but its strange that her #'s are high and she has no symptoms.

My questions are:

1) Can we just skip the endoscopy and do the gluten-free diet? (dr said this is OK if we choose to)

2) What if the endoscopy comes back negative for celiac, which contradicts the blood test? THen what? gluten-free diet or just monitoring? (dr has to research it, never had issue).

Any help would be greatly appreciated as my husband and I are trying to decide which to do, just skip the endo and do gluten-free or do the endo as we may not have to go gluten-free, or may have to go gluten-free anyway. ANy parents worries about their kid being sedated.

HELP>

Thank you

M

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chiroptera Apprentice
chiroptera
Posted

We chose not to do the endoscopy for our children because I was/am afraid of the sedation; they said they put all children out under a general. I had 2 endoscopies myself but I was just under heavy sedation and I had no problems but I do not feel comfortable with my children under a general except if they needed surgery for something that we didn't have a choice for. That said, I do realize they are very safe. Also, they have had excellent results with a gluten free diet so that is the last verification we needed. Since your child isn't have a lot of symptoms, one choice would be to skip the endoscopy and then re take the blood work to check for lowered antibodies.

Good luck with whatever you decide. I don't think there is any right or wrong in these cases and just go with mommies (and daddies) instinct!

Rondar2001 Apprentice
Rondar2001
Posted

We chose to do an endoscopy for our daughter. The procedure itself was simple with no lasting effects. Knowing that we had a confirmed diagnosis made the process of dealing with family members and her school much easier.

If your daughter is not showing any overt symptoms, I would think that a definitive diagnosis would be even more important. If she doesn't have the immediate reactions that others do, this may be the only thing to keep her gluten free as she gets older. Yet it is still very important that she remain gluten free to keep from developing other issues.

We thought our daughter was pretty asymptomatic when she was diagnosed too. Once she went gluten free we found other issues cleared up that we never would have attributed to it. This may be the case with your daughter as well.

Good luck with your decision.

chiroptera Apprentice
chiroptera
Posted

You know, Rondar has a good point about dealing with school and family members. In our case, my husbands mother has celiac and my family is SO supportive we don't care about an official diagnosis. And our daughters (twins) are nine so we don't need help from the school at all. Now our little one is not in school yet though.

There are so many factors to consider in deciding it is very hard.

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