Negative Blood Test...very Confused Now!

[kayavara]

My blood tests came back negative today and was told that my biopsy was negative also.For 5 days now....I was under the impression that I tested positive for celiac disease through biopsy.He put me on the diet ,told me to inform my siblings and printed out several pages for me to read regarding celiac disease.He told me he was sure I had a wheat intolarance and should go gluten free that day.He wished me well and said he felt sure this would help me in time.When I called with a question....I just wanted to confirmed that I did understand that I tested positive.The nurse said she was new to that office and she had to put another,more experienced nurse on the phone....who said the doctor is THINKING it is Celiac because of the gastric mucosal abnormilty and/or "redness" and inflamation he found during the scope, along with bloating,gas,abdominal discomfort,constipation,backaches,and so on and so on.....He definitely wants me to continue on the gluten free diet until August and do another scope then when he will take more samples....because of the random samples can produce false results.I have been scheduled for another appt with him in a month and a dietician appt. in 5 weeks

So.....it is still a possibility to have celiac disease and test negative on blood and scope.....right? I suppose I should let the diet do the talking.I'm just a little confused....because for a week I at least thought I had been dx at last! Now...I'm back to square one.

Kay

[happygirl]

You'll need to get a copy of the pathology report to see what was identified through the biopsy, and determine how many biopsy samples were taken. Also get a copy of the bloodwork and find out which tests were run....often, the full panel wasn't run.

Don't worry, you aren't back to square one. You just need all of the information.

Plus, if you do better on the gluten free diet, that is an answer in itself---if your goal is to eliminate your symptoms, and your symptoms resolve on a gluten free diet.....

[Ursa Major]

Mucosal abnormalities and inflammation and redness suggests to me that you have celiac disease, even if the villi aren't destroyed yet.

Many people get false negatives on the blood test. Your bowels are possibly not in bad enough shape yet to have antibodies in your blood stream. But it is probably only a matter of time (and getting much sicker) before that would happen.

I think that trying the gluten-free diet for at least six months is a good idea. If you feel better without gluten then you really have your answer.

[kayavara]

You're both right...I need to stick to the diet.He did find the "gastric mucosal abnormalty characterized by erythema".So...that can't be good...something celiac disease or not is going on.I think I'll chart my progress and the worse that could happen is that I'll feel better! I could be early into this celiac disease thing.My gasto symptoms bloating etc. are only 4-5 months old.Some other symptoms however,have been going on much longer.Maybe my doctor caught it early and my yucky days will be coming to and end soon.

Thanks for the posts...it helped!

Kay

[Willow5]

Please always ask for a copy of your testing results so you know that the Dr/lab actually ran/asked for the correct tests and the nurse read to you the correct tests results - there is so much error within the medical field!!! In the last month I have been read results from the Dr's office which were 2 years old, I have had the wrong tests run when the lab interpreted what the Dr ordered incorrectly and a week ago I was told my celiac results were all normal with a General medabolic test that was run 2 months ago. I am an RN and I insist on seeing what was ordered and a copy of any results. A call saying that all your tests came out normal means nothing.