Neg Lab Test

[fivemtnman]

Hi I have been having lots of trouble for 6 mos.now. I am a 44yr old male. Everything is normal except I get episodes of severe abdominal pain and fever with high white cell counts every now and then. The Dr did at least 12 tests the last of which was a capsule endo. She said there was some dry patches consistent with celiac disease but Antibody tests did not confirm it. I get the impression from her that I am to wait until things get worse so she can find the prob. Is there another way?

I also have a definite DX of Stage 3 sarcoidosis in my lungs that is in remission. My fathe and grandfather both died of colon cancer.

[gf4life]

I get the impression from her that I am to wait until things get worse so she can find the prob. Is there another way?

Yes, many doctors choose this route. I don't like it. I also had negative bloodtests and my doctor was determined NOT to find celiac disease with the biopsy, so she only took 3 tissue samples and did not order the lab to look at them closer. At the cellular level they can see the Intraepithelial Lymphocytes and if these are elevated, then that means that there are changes occuring in the lining of the intestines that will eventually show more damage.

I decided I did not want to wait until I had enough damage to be seen by my doctor and I was terribly ill. I already had so many symptoms and my health was declining rapidly. So I chose to have tests run out of pocket through Enterolab. Open Original Shared Link

The tests are not yet mainstream, and many doctors won't accept the results, but I researched them and felt that the tests were valid, so I ordered them for myself. The results came back positive for antibodies to gluten and also the genes (one for celiac disease and one for gluten intolerance). I went gluten free and stayed that way.

I also had my kids tested. First by bloodtest, and they all came back positive for IgG antibodies only. Then I ordered the Enterolab tests when my insurance refused to pay for tests through Prometheus labs (a higher quality bloodtest for celiac disease). They all came back positive as well.

You have a few choices. (1) You could go to a different doctor, who might tell you the same thing or who might support you in thinking you have Celiac Disease. (2) You could order your own tests through Prometheus, Enterolab or another lab that might test for celiac disease/gluten intolerance. (3) You could put yourself on the diet, but understand that once you do any further testing will not be accurate because you are already gluten free.

With the high risk of cancer due to your family history, it would probably be a good idea to be gluten free. I recommend the book Dangerous Grains by James Braly and Ron Hoggan. It tells about all the health problems that can occur when we eat gluten grains.

God bless,

Mariann