Conflicting Test Results

[bmpress]

Hi,

I was newly diagnosed with celiac disease after the GI doc did an enddoscopy and got back the Path. lab report which said I had celiac disease. My vili were eroded.

Subsequent blood testing showed NOTHING. And these tests had been performed before I went Gluten-free diet.

Now, after 9 months or so, my doc wants to do another endoscopy. My question is whether or not I should let this test procede. I have been on a strict diet and am feeling back to my old self, but he insists on this second procedure.

Advice??? Comments??

Thanks,

Barry

[GeoffCJ]

Hi,

I was newly diagnosed with celiac disease after the GI doc did an enddoscopy and got back the Path. lab report which said I had celiac disease. My vili were eroded.

Subsequent blood testing showed NOTHING. And these tests had been performed before I went Gluten-free diet.

Now, after 9 months or so, my doc wants to do another endoscopy. My question is whether or not I should let this test procede. I have been on a strict diet and am feeling back to my old self, but he insists on this second procedure.

Advice??? Comments??

Thanks,

Barry

Barry,

If you have been strictly gluten free for 9 months, and are feeling good, it seems very likely that an endoscopy will show a healed system. So it'll look like you don't have Celiac.

The blood test is known for having false negatives. I had a negative, but have had positive dietary response, clear damage on the endoscopy, and tested positive through Enterolab.

I ask the Dr. if he wants to restest to check your healing, or to check for the disease. If he says disease, it might be a sign he doesn't understand the disease!

I think it's very rare to have a false positive on the endoscopy.

Geoff

[hathor]

I don't see the need for another endoscopy. There is no call to do an invasive procedure unless there is some need to do so.

The first endoscopy was less prone to error than the blood test was. I've heard of plenty of false negatives. (And what tests were performed? Apparently, if one is low is IgA to begin with, just doing an IgA test for antigliadin will give a false negative, for instance. I'm sure if you search this site you can find folks who describe the battery of blood tests that are necessary.) I've never heard of a false positive on a endoscopy. Plus you have a positive result from the diet. There is no need to do another endoscopy for diagnostic purposes.

If the doctor wants to do it to show if healing is taking place, well, this makes no sense. Whether you've healed and how much is really irrelevant. What I mean is, is there anything different you can be doing than you already are, namely eating a gluten free diet? It isn't as if the result could lead to any different treatment.

If you want something noninvasive to check on healing you could test with Enterolab. You don't have a baseline, but you could set one for later tests.

Remember, your doctor can't "insist" on anything. It is your body. You don't have to convince him not to do something; he has to convince you to do it. If he hasn't, just say you aren't convinced of the need & so will not do it.

I had a doctor who told me I needed knee surgery one time. We even scheduled it. But in the intervening weeks I have physical therapy and my knee steadily improved. On the eve of the surgery he assumed I was going forward. I had to call him back into the room & tell him I didn't want the surgery. He was angry and tried to be insistent. I just stuck to my guns. A month later, my knee was back to normal and the doctor was saying he was glad "we" had decided against the surgery.

Anyway, I think the standard practice used to be to have followup endoscopies. But I thought that doctors had moved away from that because they don't accomplish anything.

[aikiducky]

It's not unusual to have a follow up endoscopy to see how you're progressing with healing. If you had had a positive blood test result, they could take another blood sample to see if the antibodies are coming down, but because you had a negative blood test in the first place that avenue for follow up testing is closed, which I assume is the reason they'd like to do an endo.

Let's face it, a lot of people do have trouble staying on this diet, I think that is one reason follow up testing can be important. It's a way to check whether or not a patient has been diligent with the diet, and for the patient to see that they really have to be diligent, see what I mean?

The thing I personally don't agree with (but remember I'm not a doctor) is how soon the follow up endo is often done. It might make sense if someone is really unmotivated to follow the diet, but otherwise I think it's more useful to only do the follow up endoscopy in something like 1,5 or 2 years after starting the diet because that seems to be how long it takes adults to heal.

Pauliina

[chrissy]

barry, sounds like you have a smart doctor. since you didn't have positive blood work, you can't follow the reduction in antibodies to assess your progress. of course, you can choose to do (or not) the endo. personally, i feel like it is a good idea to follow the advice of a doctor you have confidence in, and who has actually examined you. i think that they will be easier to work with if you are cooperative with them-----within reason.

[bmpress]

Thank you all for your well-thought comments. My doc had said that the test was to look for healing. He was also concerned about my lack of weight-gain, and in the last month I finally was able to gain 8 pounds....so, my plan is to see if he may be willing to back-off in the light of my weight improvement.

But... since I have confidence in his abilities I will go along with his decision. Actually, I was very impressed that he diagnosed me so quickly...especially after reading about the tales of horror on this forum.

Barry