Celiac Blood Panel Reliability

[Guest Eagle]

Hello, I saw my doctor recently for bizarre neurological problems, numbness, burning, ringing in right ear. She did a neuro exam in her office and wrote down that there were cerebellar problems such as ataxia. I have had malabsorption for years, autoimmune thyroid, B12 deficiency. I asked to have a celiac panel done. All tests came back normal. I get the feeling that despite the cerebellar dysfunction I am being written off as having a panic attack or psychosomatic problem, which is definitely not the case. Has anyone had a negative celiac blood panel but a positive enterolab gluten test? My thyroid and B12 are normal. I am wondering what to do next.

[Ursa Major]

Those blood tests are quite unreliable. Many here had negative blood tests, and even negative biopsies (these are known for false negatives, too) and had positive tests with Enterolab, and a very positive diet response.

I say your next step should be to try the diet. If you see positive changes and still want an official diagnosis, you can still do Enterolab, as it will still be accurate up to a year of going gluten-free.

[happygirl]

Couple things:

Some of the Celiac panel, for Celiacs who have full blown damage in their small intestines, is highly reliable. But that doesn't cover all celiacs, or any of those who are gluten intolerant (non-Celiac but gluten is still a prob)

your bloodwork could be negative and you could still have Celiac.

there are cases of those with negative bloodwork, and they have a biopsy, and it is positive.

You could have neg bloodwork and neg biopsy and still have Celiac (tests aren't fully sensitive, plus, biopsy can easily miss damage).

your bloodwork will always be negative if you have non-celiac gluten intolerance, because the bloodwork does not test for that...it only tests for Celiac.

yes, there are many on the board who have improved going gluten free, either without tests (you don't need a test to try the gluten free diet!!!) or as a result of inconclusive testing and they proceed to enterolab. There are some who went straight to enterolab, and some who never tested.

when you say the celiac blood panel, which tests were run? Was the tTG run? Often, we ask for the tests and not all the tests are run, so this is why I am asking .

Welcome to the board!

Laura

[tiredofdoctors]

Welcome to the board! I have neurological celiac -- and what you are describing are exactly the symptoms I had for a LONG time -- and was told by several that I was a head case!! I did, however, have elevated anti-gliadin antibodies. The first test showed them as high, the second as "outrageously high" according to my neurologist. The other two tests and the small intestine biopsy were negative. Since all of the information has finally been "proven" and accepted, antigliadin antibodies are now understood to cause extreme cerebellar damage.

I would ask my MD to perform another antigliadin antibody test. That is the test that determines if you are gluten intolerant. My guess is that yours is going to be elevated.

Please keep us updated.

Hugs to you,

Lynne