I'm Confused

[MollyBeth]

Okay...So my whole life I've had issues with low blood iron and protien. I've had ulcers...Doctors have told me I have IBS...Then finally, a few months ago, a doctor tells me about Celiac Disease. Like many people I had never heard of it before. I started reading about symptoms and I felt like I was reading about myself. So we did a blood test and I was shocked when it came back negative. So that doctor abandoned the idea that I had Celiac. Well because my stomach and intestinal problems aren't getting better I have been referred yet again to a GI specialist... Now he's telling me again ...I think you have celiac disease. So now I am doing yet another endoscopy in a long list of endoscopies in my life and he is going to take a biopsy of my intestine to check for it again. So my question is... Are False negatives on blood tests common? I feel so lost. I'm 25 and I'm sick all the time and I'm need to see some light at the end of the tunnel. I feel like I finally may have found the answer to my problems but am woried now that this just may be another dead end.

[mftnchn]

I feel like I finally may have found the answer to my problems but am woried now that this just may be another dead end.

You certainly may have found the answer, unfortunately the tests are not all we would wish they would be. A positive blood test is pretty conclusive, but a negative one is not. Its good to get a biopsy, if this is positive its is a gold standard.

If the tests are negative, I'd highly recommend a dietary trial. There are many on this forum who did not get positive tests, blood or biopsy, but have responded wonderfully well to the gluten free diet.

You might also look into the specific carbohydrate diet as people with your symptoms have responded well to it as well. It is gluten free, but stricter yet.

Keep posting here, people hare happy to help along the way.

[ravenwoodglass]

If anyone can identify with your post I do. Unfortunately. I would go ahead and get the endo done. As mentioned there is still a risk of a false negative even with the biopsy. You have 22 ft of small intestine and damage can be patchy so do try the diet as soon as the endo is done. You don't need to wait till the appointment to review the results. You may know before you even get to it if your symptoms have been significantly relieved. It can be helpful to keep a log of symptoms and 'movements' from before the endo and continue it as you begin the diet. There are some savvy doctors that do recognize the improvement on the diet is diagnostic and if your endo should come back negative or inconclusive the diary could help with confirming the diagnosis.

[Amyleigh0007]

Yes! False negatives are common. Try the diet and see if you feel better. That will be your answer.

[MollyBeth]

So I've been reading away and there seem to be so many tests and diets. I was reading one post where someone said that she was having to tell doctors what to do. Is this common? Are there any tests I should be asking my doctor for beyond this biopsy? Like a food sensitivity test?

I'm trying to review in my head all my symptoms and am compairing and contrasting the way I feel and I'm not sure...sometimes I feel like maybe I haven't had symtoms but then I think I've been feeling sick on and off like this all my life and maybe I just don't know what normal healthy people are supposed to feel like. I've had the ulcers and bowel problems on and off since junior high.

I keep trying to talk about this with relatives and they're very dismissive because I had the negative blood test. They're making me feel like I'm a hypochondriac or something...

I'm so all over the place and this whole thing is making me sad and I just don't know where to start!! I feel like a sitting duck waiting to have this biopsy taken! What can I do in the mean time besides go out of my mind?

[mushroom]

[quote name='MollyBeth' date='Sep 19 2008,

...I keep trying to talk about this with relatives and they're very dismissive because I had the negative blood test. They're making me feel like I'm a hypochondriac or something...

I'm so all over the place and this whole thing is making me sad and I just don't know where to start!! I feel like a sitting duck waiting to have this biopsy taken! What can I do in the mean time besides go out of my mind?