A Gi Or Gp For Celiacs Test? (plus Is My Gp Wrong?)

[3groovygirls]

Hi everyone! My daughter was recently diagnosed as having Celiacs. She also tests positive for the HLA-DQ2 gene. I asked my GP if I could be tested for Celiacs. She said no, that if I have no symptoms I was fine. She also said most cases are sporadic and NOT genetic.

Hmm....the more I read about Celiacs the more this is totally false! No, I don't have classic symptoms, but if you read the *really* long list of symptoms I have some. (Kidney stones, I have a child with a neural tube defect, I'm really, really skinny for my height). But isn't it odd she doesn't think I should be tested?

Should I go in and demand to be tested? Can a GP even do the genetic test? Or should I go to a GI Dr. for this test (and all of it)?

As the parent of a child with Celiacs, it *is* important to get tested right?? And the siblings as well, right?

Thanks,

Linda

[wowzer]

I am sure that the GP could get the genetic test to do. My family doctor could. You can have your GP do the blood test. It is genetic and your daughter got it from somewhere. I wish my parents had checked further. I have a little sister that was diagnosed at a year. I figured I had it when I was 52.

I figure that my Mother has it but won't get tested. Like you I have been skinny all of my life. I was a late bloomer. I see so many things over the years that should have found this sooner. I would say if your GP won't test you and your other children, I would look for a new doctor.

[Jestgar]

Should I go in and demand to be tested?

Do you want the genetic test only? Or the blood test too?

What will you do if the results are negative? Would you try the gluten-free diet anyway? If the answer is yes, then don't bother getting tested. If you are only willing to eat gluten-free if your test is positive, then ask for it. Your doctor could refuse to order it, and your insurance could refuse to pay for it, if the doc doesn't feel it's necessary so consider all possibilities before heading off to the clinic.

[3groovygirls]

Honestly, no, if I don't have Celiacs I won't go gluten free all the time. I probably will a good deal of the time since my daughter has it, but if I go out to eat without her, etc, I wouldn't. However, if I have the gene I may consider it! Or I'd at least know I should get screened for it once a year or be on the lookout for symptoms, etc.

[jerseyangel]

My gastroenterologist feels very strongly that all first-degree relatives of a Celiac should be screened. Celiac is genetic, so it makes sense.

Your GP can order the Celiac bloodwork--including the genetic test. Mine was done through Quest and covered completely by insurance....definately check with your own insurance company, though, as the genetic testing is a more expensive test.

[leslieg]

You have a child with a nueral-tube defect? That may be another "symptom" of celiac. I'm brand-new to this diagnosis and my knowledge is largely from reading many posts ... but I have a child with spina bifida and there certainly are theories that a maternal inability to absorb folic acid can lead to spina bifida. (Boy, does that suck. Really, really, really, really suck. At least back then I wasn't displaying nearly so many symptoms and I don't know that I'd taken any of them to a doctor yet.) I have every intention of getting my children tested (starting with the one who shows the most symptoms as he already has a GI who never bothered to test!)

If your GP won't test you based on lack of evidence, then get one of your NTD daughter's docs to test her. (hmm, which one? I'm asking her urologist first since he's done bowel operations on her.) If she tests positive, then testing you should be a no-brainer.

[My daughter is 17, SB L2-3]