Tested Twice In A Year With Different Results.. Any Idea What It Could Mean?

[Stormy]

So I was going through old medical records and came across some blood work from about 18 months ago. Apparently one of the things they tested me for then was Celiac Disease. According to the blood work everything was within the normal ranges, and I was negative for celiac disease. I was tested around a month or so ago by a different doctor, and while one test came back negative, she said another came back mildly positive (I don't have a copy of this more current blood work to compare with). At the time, I wasn't aware I HAD been tested before, so neither of us were aware of prior negative results. She went ahead and diagnosed me with Celiac Disease, since one test was mildly positive (I can't get a colonoscopy done right now for further testing) and we've been going with that ever since. Has anyone heard of test results like this changing? Is this better evidence that I really do have Celiac disease? I'm not sure what to make of the two different test results. At the moment, I'm still having GI problems (normal stool is rare for me) though the cramps are mostly gone. I stopped eating dairy products a couple of days ago, to see if maybe there's some lactose issues going on now too, but so far there hasn't been any change. Not sure what to do, if anything right now.

[sa1937]

  On 7/22/2011 at 4:30 AM, Stormy said:

So I was going through old medical records and came across some blood work from about 18 months ago. Apparently one of the things they tested me for then was Celiac Disease. According to the blood work everything was within the normal ranges, and I was negative for celiac disease. I was tested around a month or so ago by a different doctor, and while one test came back negative, she said another came back mildly positive (I don't have a copy of this more current blood work to compare with). At the time, I wasn't aware I HAD been tested before, so neither of us were aware of prior negative results. She went ahead and diagnosed me with Celiac Disease, since one test was mildly positive (I can't get a colonoscopy done right now for further testing) and we've been going with that ever since. Has anyone heard of test results like this changing? Is this better evidence that I really do have Celiac disease? I'm not sure what to make of the two different test results. At the moment, I'm still having GI problems (normal stool is rare for me) though the cramps are mostly gone. I stopped eating dairy products a couple of days ago, to see if maybe there's some lactose issues going on now too, but so far there hasn't been any change. Not sure what to do, if anything right now.

It's entirely possible that test results may have been negative in the past and positive now. Be sure to pick up a copy of the test results, which should also show reference ranges.

Actually you need an endoscopy and biopsies, not a colonoscopy, for celiac disease. A colonoscopy may reveal other things but NOT celiac. If you do not plan to have an endoscopy, you need to go on a strict gluten-free diet and dairy-free, too, if you have lactose issues. Many times dairy can be added back after you have healed.

So it's up to you what direction you go. I did not find eating gluten-free to be difficult...perhaps a little overwhelming at first but it definitely gets easier.

[ravenwoodglass]

Celiac disease can develop at any point in someones life. The important test is the most recent one. If you are not going to have an endoscopy then do go ahead and start the diet. Be aware that damage can be patchy so even if you do have the endo and the results of the biopsies are negative the positive blood test trumps any possible negative biopsy results. Chances are you are going to feel a lot better once you have been on the diet for a bit but you can have some ups and downs at first.

Read as much as you can here and ask any questions you need to. You are doing the right thing to drop dairy for bit but many of us can add dairy back in after we have healed for a bit.