Negative Celiac Panel Results, But Still Can Have Celiac?

[mama2two]

My husband wanted to post a question asking if people ever get false results from a celiac panel, because his was negative, but he is still having problems and has had a positive response from following the diet for only a couple weeks. I told him that I thought that people are often told they have a negative panel, then later they find out they do have celiac. He is considering testing with enterolab. SO, anyone really have celiac, but get a negative result on the celiac serum panel?

[happygirl]

Clinically:

From Open Original Shared Link

Seronegative celiac disease

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative. In addition the mode of presentation of the celiac disease, i.e. presence of silent or subclinical celiac disease may be associated with a negative EMA

Real life:

A Celiac friend of mine had a friend that I knew. My Celiac friend urged her friend to be tested by a knowledgable GI. Her panel was negative, but the doctor was concerned enough that she performed a biopsy. She was positive for Celiac.

So yes, it can happen.

The other thing to consider is that its not "true" Celiac in the terms of how the medical community currently defines it, but is still a non-gluten sensitivity.

[aikiducky]

I don't remember what the actual percentage was but it was around 30% I think, of adults who have negative blood results but turn out to have positive biopsies. So yes, it's possible.

Pauliina

[ravenwoodglass]

My husband wanted to post a question asking if people ever get false results from a celiac panel, because his was negative, but he is still having problems and has had a positive response from following the diet for only a couple weeks. I told him that I thought that people are often told they have a negative panel, then later they find out they do have celiac. He is considering testing with enterolab. SO, anyone really have celiac, but get a negative result on the celiac serum panel?

I am one of the 30% who don't show up on blood work. No one ever told me about the diet. I was very sick for 15 years, the last five years before I was diagnosed were very costly. We averaged 17 thousand dollars a year for my copays on drugs, doctor visits and testing. But the cost on my health was far more. Even after my Allergist diagnosed me and I had a great deal of relief from the diet my GI wanted more proof. He had me do a gluten challenge for 3 days before my biopsy. The day of the biopsy found me bleeding heavily from the challenge and in so much pain that I could not get up from the floor of the bathroom. I finally got my firm diagnosis but it almost killed me.