Suggestion Wanted For Testing Or?

[CMCM]

I'm finding a lot of useful info here, but I'm still left unsure of how to proceed. I'm highly suspicious that I could have celiac disease or at least the gluten sensitivity and things do seem to be getting somewhat worse than what I've put up with my whole life until now.

Tell me if I'm wrong, but it seems from what I've read that 1) blood tests aren't necessarily the best diagnostic tool 2) The enterolab stool test is more accurate

I guess I'm wondering if I need to go thru all the expense of testing when the "cure" is going to be dietary anyway. That is, would everyone recommend just following the diet for a period of time just to see what happens? I guess recovery from symptoms would tell me everything I need to know, right? Or is there something beneficial to actually having bonafide positive test results in hand? Is having the test resuts helpful to give you the drive necessary to do the diet properly and completely?

ALSO....if you believe there IS value in the blood tests, could you tell me exactly what group of tests would be needed? I thought I saw this somewhere, but couldn't find the info again.

[nettiebeads]

  CMCM said:

I'm finding a lot of useful info here, but I'm still left unsure of how to proceed.  I'm highly suspicious that I could have celiac disease or at least the gluten sensitivity and things do seem to be getting somewhat worse than what I've put up with my whole life until now. 

Tell me if I'm wrong, but it seems from what I've read that 1)  blood tests aren't necessarily the best diagnostic tool  2)  The enterolab stool test is more accurate 

I guess I'm wondering if I need to go thru all the expense of testing when the "cure" is going to be dietary anyway.  That is, would everyone recommend just following the diet for a period of time just to see what happens?  I guess recovery from symptoms would tell me everything I need to know, right?  Or is there something beneficial to actually having bonafide positive test results in hand?  Is having the test resuts helpful to give you the drive necessary to do the diet properly and completely?

ALSO....if you believe there IS value in the blood tests, could you tell me exactly what group of tests would be needed?  I thought I saw this somewhere, but couldn't find the info again.

<{POST_SNAPBACK}>

Go to search up at top and type in tests, or go to members and enter KatieUSA and then search her posts. I've never had the tests done, well, not the blood or stool or anything. I was dx'd by the diet challenge by my dr. 9 yrs ago. But I don't think that the tests, if any, at that time were very sophisticated anyhow. I believe the bloodwork would tell you just how bad off you are and if it's celiac or gluten intolerance. Enterolab can let you know if you have specific genetic markers for celiac, gluten intolerance, or both or none. Biopsy, if done correctly, can show how much damage, if any, has happened to your villi. That's it in a nutshell. It depends on how much you HAVE to know. Me, I'm kinda curious about my genetic markers and may pursue that. There is absolutely no way I'm going back on gluten to find out if maybe I have gluten intolerance or celiac. Either way, the treatment is the same - gluten-free. Remember though, if you try the gluten-free diet and have the tests w/o going back on gluten for a good length of time, the tests will be skewed.

[danikali]

HI-I just went through all of the testing because for one, I know FOR SURE that there isn't more going on; but after I went on the gluten challenge (where you eat gluten just for the testing purposes) after being almost 100% off of it for 3 months, that really gave me all the proof that I need. Ever since I went to eating "anything I wanted" from cookies to pasta, to pizza to bread, I FELT LIKE EVEN MORE CRAP ALL OVER MY BODY IN A MILLION DIFFERENT WAYS then ever!

Soooooo, I would say if you don't feel the tests are necessary, then just try the diet. It def. will give you answers but you need to follow it 100% which is something I never did before. That means, any and every product you eat AND USE (shampoo, conditioner, soap, etc.) or you won't get completely accurate results from the diet either.

Today is my first day gluten free and I'm just waiting for the results. I also went through the testing to prove to family and friends that I'm not crazy, which is kind of crazy in itself because I felt like I was killing myself everyday as it got worse and worse!

Anyway, so I would say, it depends on how bad you feel and how strongly you believe this is your problem. And if you aren't willing to go 100% without a diagnosis, (which is hard to do, at least for me it was) then maybe you should just go through with the testing before you start messing with your diet, and then decide to get the tests. If you start eating gluten free, or even mostly gluten free, your tests may not come back accurate anyway because you might not have enough gluten in your system to show up! Unless you use enterolab, which I also did.

Anyway, I might have confused you more, but I just went through this whole thought process, so I thought I would add my input from experience.

Good luck!