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Celiac Screening  

post #1 of 12
6/18/08 at 2:25pm
Thread Starter 
Anyone have experience with a buchal (cheek swab) gene test for Celiac?
post #2 of 12
6/19/08 at 1:17pm
Yes, we did it through Enterolab. Some of the best money we ever spent.
post #3 of 12
6/19/08 at 1:55pm
Thread Starter 
Glad to hear it. I just read about it as a possibility this week, told my ND about it- and she thinks its an awesome idea for us to rule out/rule in Celiac. I'm excited.
post #4 of 12
6/19/08 at 1:57pm
Definitely. By doing it we discovered I have two copies of the same gene, so we didn't have to go to the expense to test my kids since we know automatically that they'll all carry the gene.
post #5 of 12
6/19/08 at 2:18pm
Thread Starter 
The more I look at our family histories, the more I think we're likely candidates to be predisposed. I love how non-invasive the screening is, and that it isn't dependent on eating gluten for months to be accurate.
post #6 of 12
6/19/08 at 3:22pm
hmmm.... I might have to look into that. All my recent symptoms point to celiac, but I haven't been eating gluten, so not sure that's even a possibility! But it would be nice to rule it out.
post #7 of 12
6/19/08 at 3:25pm
Hmm. Is this something insurance might cover, or does this have to be done out of pocket?

All I know is that gluten is a fibro trigger for me, both when I consume it and topically in specific situations (if it's wet, not dry, and if I have any cuts on my skin- washing out a bowl full of wheat pasta is problematic but brushing off dry bread crumbs is not.)

I don't have the same problems with touching dairy, although I can't eat it.

Is it likely that I have Celiac, or could this be a wheat or gluten allergy? Is it worth getting me or my kids tested?
post #8 of 12
6/19/08 at 3:31pm
I haven't heard of the cheek swab, but my son recently went through blood tests for celiac and allergies. He tested negative for celiac disease, but it turns out he is allergic to both wheat and gluten. His tests were ordered through a pediatrician and our insurance paid for it all.

The end result is still that he needs a gluten-free diet, but the mechanism within his body is different. Had we tested for celiac alone, we would not have detected his allergies and that he still needed to change his diet.
post #9 of 12
6/19/08 at 4:15pm
Thread Starter 
The cost is $149 if you pay out of pocket. Some people may have a hard time getting insurance to cover it, because AFAIK there are only two labs that do it.

A Celiac blood test or biopsy only tells you if you have active Celiac disease which is the end result of gluten sensitivity.

A Celiac gene test tells you if you are at risk. Its thought that 1/3 of US is gluten sensitive.

In the end, reactions trump results anyway... and so if a gluten free diet fixes your problems, it doesn't matter what the test results say.
post #10 of 12
6/19/08 at 4:33pm
OK, but here's the deal: I know that a GF diet helps ME. But if there's a genetic component to my gluten sensitivity, then the lab test might help my children as well.

12yo DD has numerous but subtle problems. She's improved greatly on the Feingold Program, but she still has behavioral issues. She's also incredibly short for her age- which could be due to genetics or it could be a sign of some sort of problem. If cutting out gluten will help her, I'll gladly do it- but I don't want to limit her diet uneccesarily.

What kinds of testing should I ask the ped about?
post #11 of 12
6/19/08 at 4:48pm
Thread Starter 
The cheek swab Celiac gene test from Enterolab will tell you if there's a genetic component. This is a huge part of the reason I'm doing it... it could help my family members make choices that could help keep autoimmune diseases at bay. Rheumatoid arthritis runs in my family. I'd love to avoid it, and more so to help my daughter avoid it.
post #12 of 12
6/20/08 at 3:17pm
Quote:
Originally Posted by Ruthla View Post
OK, but here's the deal: I know that a GF diet helps ME. But if there's a genetic component to my gluten sensitivity, then the lab test might help my children as well.

12yo DD has numerous but subtle problems. She's improved greatly on the Feingold Program, but she still has behavioral issues. She's also incredibly short for her age- which could be due to genetics or it could be a sign of some sort of problem. If cutting out gluten will help her, I'll gladly do it- but I don't want to limit her diet uneccesarily.

What kinds of testing should I ask the ped about?
I am wondering the same thing with ds. He is really short- trying to figure out if it is normal or not. It is so confusing to me with all the different tests out there and I don't want to limit his diet if there is no need.
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