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DNA testing  

  1. 1. How do I go about getting a Celiac DNA test?

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I have gone to a lot of doctors and on my own have discovered excluding gluten from my diet has radically changed all of Celiac symptoms. I've read that I would have to go back on gluten in order to take a lab test. That's crazy. I wouldn't do that! I liken that to telling a child it's okay to play on the freeway. It's not my fault the medical community doesn't have a good test. How come they are able to test hair for drugs, etc., but can't do something that simple for gluten?

Okay, here is my main question. I understand that DNA testing does not confirm Celiac only "rules it out." That's okay with me. I watched my father go through (never diagnosed) ALL of my same symptoms and then die of colon cancer. :( Incredibly sad. I am 60 years old and JUST discovered on my own what has been going on in my body forever.

I see so many chats that unable to get positive blood tests or endoscopy findings.:( I understand this can happen no matter what level of gluten protein is in my blood....pardon the expression, but it's a crap shoot.

I'd like to know how to get DNA testing...is it expensive? Thank you.

Discovery in La Crescenta, CA

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I had my DNA testing done through Enterolab. I'd suggest going to their website, www.enterolab.com, and checking into it to see if it's what you're intersted in. You can also have stool testing done there which is another option.

The gene testing through Enterolab costs $149.

Good luck! And by the way, I'm glad to hear that you're feeling better on the gluten-free diet. Me, too! :)

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My GI ordered gene testing through a regular lab for me because I was in the same situation as you- my initial bloodwork was negative, but I wasn't about to go back on gluten for an endoscopy. It turns out I do have the common allele for celiac, and that combined with my symptoms, he says, is enough for a diagnosis.

The only problem is that insurance is refusing to cover it, and it's a $500+ test. But we're fighting the charge, and the GI is helping, so it might work out. Just double check on that...stupid HMOs...

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I had my son tested through Enterolab as well after his bloodwork and biopsies came back negative. Turns out that he has both celiac genes, that in combination with his great dietary response is enough proof to me.

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I have gone to a lot of doctors and on my own have discovered excluding gluten from my diet has radically changed all of Celiac symptoms. I've read that I would have to go back on gluten in order to take a lab test. That's crazy. I wouldn't do that! I liken that to telling a child it's okay to play on the freeway. It's not my fault the medical community doesn't have a good test. How come they are able to test hair for drugs, etc., but can't do something that simple for gluten?

Okay, here is my main question. I understand that DNA testing does not confirm Celiac only "rules it out." That's okay with me. I watched my father go through (never diagnosed) ALL of my same symptoms and then die of colon cancer. :( Incredibly sad. I am 60 years old and JUST discovered on my own what has been going on in my body forever.

I see so many chats that unable to get positive blood tests or endoscopy findings.:( I understand this can happen no matter what level of gluten protein is in my blood....pardon the expression, but it's a crap shoot.

I'd like to know how to get DNA testing...is it expensive? Thank you.

Discovery in La Crescenta, CA

I actually got gene testing done on the "back end". I had been on the diet for over a year based on positive biopsy. (There was no need for a blood test because I was so malnourished the doctor went straight to the scope). Anyway in order to see how I was progressing I had the Celiac panel done and while I was at it requested the gene test for myself and my mother. She came from a large family and many of her brothers and sisters are still alive. Both of us had the DQ2 gene. My Celiac panel was "perfect" as one might expect after being gluten-free for over a year. At first her insurance did not want to pay but we persisted saying it was in fact "preventive medicine" in that knowing the gene exists means if symptoms did start the diet could be a first option. The insurance company paid the bill. It can be quite expensive.

It is my opinion that if someone suspects Celiac then the most logical approach would be the diet first or gene testing and the diet to see if you are on the right track. Either way you could hold down the cost. If you respond positively to the diet you can either get on with your life or decide at some point to attempt more testing but as you probably already know what's the point if you will ultimately end up on the diet for good anyway. Hope this makes sense and good luck.

Tom

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Genetic testing does not and cannot rule out Celiac Disease. Celiac Disease isn't exclusive to the DQ2 and DQ8 genes. Two percent of diagnosed Celiacs do not have DQ2 or DQ8. I have DQ1 and DQ3, and I am a diagnosed Celiac. So even if your DNA tests comes out negative for DQ2 or DQ8, you can still have Celiac Disease. Just something to keep in mind,

-Brian

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Genetic testing does not and cannot rule out Celiac Disease. Celiac Disease isn't exclusive to the DQ2 and DQ8 genes. Two percent of diagnosed Celiacs do not have DQ2 or DQ8. I have DQ1 and DQ3, and I am a diagnosed Celiac. So even if your DNA tests comes out negative for DQ2 or DQ8, you can still have Celiac Disease. Just something to keep in mind,

-Brian

Brian you took the words right out of my mouth. The genetic research into celiac is in it's infancy, not all the genes are recognized. If I had relied on blood tests and gene tests for diagnosis I would be dead by now. I didn't have my genes tested until I had been gluten-free for almost 4 years. I did it because my DD was gene tested and came back negative for DQ2 and DQ8 and the doctor told her there was absolutely no way she could be celiac as she didn't have the genes and that her previous biopsy derived diagnosis was false. Yea right. There is no doubt that I had full blown celiac and guess what I don't have the recognized genes. My gene in the US is recognized as a gene for rheumatiod arthritis, if I hadn't already been gluten-free I would still be existing on arthritis meds instead of being in remission from my arthritis and my multitude of other autoimmune mediated diseases.

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    Oh yes, it could, although to be honest I never got myself so wet with sweat that it would have been a serious situation.  However, I can remember one time when I got caught in a cloudburst while going to my car in a large parking lot, though, and got soaked to the skin, and of course had to wear those soaking-wet clothes while I drove the 45 minutes it took me to get home --- I will NEVER forgot the misery and agony of that drive!  I could just barely keep the car under control, in fact.
    Thanks for your response, Squirmingitch, but I have to almost laugh, as at this point I am not really stressing over these questions at all --- just curious.  I have always been an insatiable question-asker, so please don't take my frequent questions as a sign of my obsessing over celiac disease or DH.  Yeah, admittedly I was rather stressed out for a couple of days two weeks  ago or so, but I am significantly settled down now, even while negotiating the nutritional maze of trying to manage two
Water?! That's… unreasonably inconvenient. Did it happen with sweat?
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