Which Tests Should I Order?

[Segnaro]

Hello! This is my first post on this board. My brother and sister have recently beed diagnosed with Celiacs. Their docs suggested I get tested too. My health insurance is terrible and my doc doesn't seem to think I need testing because I don't have any major symptoms. So, I've been reading through the posts here and I see a lot of you go straight to enterolab. I checked out their website and saw that you can do it all yourself - great! The only thing is, I don't have a clue which tests to order. If I just wanted one or two tests to see if I am genetically predisposed to this disease, which ones should I order, and do you think that would be enough?

Thanks so much in advance for your responses.

[GlutenWrangler]

If you just want to know your genetics, get the genetic testing for celiac disease/gluten sensitivity. I think it is $149. If you want to know the genetics and if you are currently creating an immune response to gluten, get the complete panel with the gene test. I think that one is $369. It is a good idea to get the complete test becuase even if you are not exhibiting any symptoms, you could be harboring active celiac disease or gluten sensitivity. But it's your call. I hope this helps.

-Brian

[kristi]

Will the complete panel and the gene test work for me? I have now been gluten free for a year but would still like to know more. Will that mess up the tests completely?

Kristi

[tarnalberry]

A year is right at the end of their cutoff - at the end of the range at which they say they can still detect antibodies. It may or may not show up given how long you've been gluten free. Just doing the gene test won't tell you if you have active celiac, but if you could develop it. But that knowledge, in combination with knowing whether or not the diet has helped you, should give you additional confirmation.

[Viola 1]

Will the complete panel and the gene test work for me? I have now been gluten free for a year but would still like to know more. Will that mess up the tests completely?

Kristi

The diet wouldn't change your genetic code, so the gene test should work. However, it would change the outcome of the blood tests. So the complete panel probably would not be accurate.

[GlutenWrangler]

If you want to know if you have active celiac disease, you need to start eating gluten for the test to be accurate. I'm not sure for how long, but at least 2 weeks. If you don't want to do that, just get the gene test. Chances are if your siblings have celiac disease, you also have it. Good luck,

-Brian

[kristi]

THANKS everyone for your help!!! My original diagnosis showed up with high IgG and low levels of adrenal antibodies in my blood work from a gland specialist in a hospital. I was so sick back then and was seeing a zillion doctors. I felt like I was dieing and all of them weren't coming up with anything. I kept asking where I could go for more tests and a different kind of specialist with what they found in the bloodwork but they just said no more tests, just don't eat wheat and see your GP. My general practioner said she had never heard of such a thing, she had no idea how to read the test results and ran to her computer in the hall shortly followed by bringing in a nurse for "dietary advice". The nurse said, "Now it's important not to eat flour." That was it. Oh my gosh there is so much more to it. I had learned more than that the evening before on the very first hit on the internet. They sent me out the door. I went back to the hospital pleading for direction and they aimed me to an allergy clinic were I spent hundreds and hundreds $$$ (on top of the thousands already spent) just for me to finally learn there is a difference between intolerances and allergies as this was showing nothing. They only tested for allergies not intollerances at that clinic. Nobody seems to be very educated in this. I sure this isn't a unique experience. I just want to know if I have it or not. I'm afraid to experient and go backwards without a good doctor in the wings. Is there a special clinic SOMEWHERE...ANYWHERE in the country I can go to that knows what they are doing? I'd travel anywhere and relocate to get this figured out! Thanks for your ideas.

[GlutenWrangler]

Actually there is a special clinic. It's called the Celiac Disease Center at Columbia University in New York. Here's the website: Open Original Shared Link.

-Brian