Positive Biopsy Negitive Bood Tests?

[Edges12 0]

My 6 year old son (adopted-no real family history) Had endoscopy last week for abdominal pain, vomiting. He was found to have reflux, gastric spasm, and espophagitis. The biopsy also showed increased lymphocites in his intestional tract and villa atrophy. the GI said he felt he had Celiac and ran a celiac panel and some other Immune Tests. He just called to say that the tests came back normal and he does not have celiac. He is not sure what he has but did not reccommend any other testing. Meanwhile our son is down 7 lbs in 2 1/2 weeks and continues to do poorly. The pediatrician is still doing research.

So .... could he still have Celiac and have negative blood tests? any other thoughts on what we should do, tests etc. When he had the blood work done he had been sick for 12 days and had been on almost a full liquid diet. I asked the GI if this might effect the results and he said no. Any thoughts?

[celiac3270 5]

There definitely can be for a few reasons: If you don't eat gluten for at least 3 months before testing, if you're IgA deficient, if the lab messes up, etc. It's definitely possible. Prometheus is a good lab to send the blood to. And some people just test negative but respond very well to a gluten-free diet....or get a negative blood, but positive Enterolab result.

What blood tests were run?

[KaitiUSA 9]

Some blood tests that are done are not as specific as others. Prometheus labs as mentioned is a reliable lab for celiac testing. He also should get a gene test done.

Enterolab might be a good option they test for malabsorption, gluten sensitivity, genes and so forth.

He has the symptoms and the damage it sounds to me like he has celiac. Some people have negative bloodwork but still have it, some people have negative biopsies and have it.

He could also have been IgA deficient. Alot of celiacs are and that can make otherwise positive tests, negative.

I think you should find a doctor for him that knows alot about celiac and symptoms and so forth.

Good luck and your family will be in my prayers.

[Edges12 0]

I am not postive which labs were run. He just wrote Celiac Panel and then also added IGA,IGM and one other plus a test for lymphocites in the blood (which is not back yet) He did not read me the results just told me they were fine. Our son was certainly not gluten free for 3 months but was for the 12 days prior to testing due to his stomach problems and inability to eat. The tests were done through LabCorp

[celiac3270 5]

I asked because the tests under the celiac panel hold different....weight w/ a pos. or neg. reaction...with one test a positive might be nearly definite and with another, it might still make celiac disease questionable.

Endoscopies can easily get false negatives but have very reliable positives. I'd go gluten-free on that.