Test results

[Janet Denis]

I have had issues for years. I pretty much have every symptom of Celiac. My mom, sister, and daughter all have confirmed Celiac. I have had the blood tests twice with negative results both times. I had a colonoscopy and gastroscopy a few months ago with biopsy. The specialist said the biopsy results indicate Celiac - there is damage. However, because my bloodwork is negative, they will not officially give me the diagnosis of Celiac. Curious if anyone else encountered this? 

[trents]

Welcome to the forum, @Janet Denis!

Yes, we have had any number of reports from forum members who had positive biopsies but negative blood work. Can you be more specific about which celiac antibody tests have been performed on you? Has a "total IGA" test been done? If your total IGA is low it can generate false negatives on other IGA tests. In addition to that, for whatever reason, some celiacs have immune systems that respond with IGG mediated responses rather than IGA mediated responses. Unfortunately, many or most physicians will order minimal testing, often only the tTG-IGA and so those with atypical immune system responses are missed. Not sure what part of the world you live in but your use of the term "gastroscopy" instead of "endoscopy" suggests to me that you are outside the USA. That could mean you don't have much input into testing as the patient since countries with heavily socialized medicine systems often don't give much control to patients. But if it you have the option, I would suggest asking for these additional tests to be run if they have not been done already:

1. Total IGA

2. DGP IGA

3. DGP IGG

Here is an overview of the blood tests that can be run for celiac disease: 

It is crucial that you would have been eating significant amounts of gluten for weeks leading up to the day of the blood draw, like the gluten equivalent of 4-6 slices of wheat bread daily for at least three weeks.

[Janet Denis]

Thanks for the quick reply! I am in Canada. Not exactly sure what blood test they did? I will have to find out. I was never told to keep eating that much gluten before I had my bloodwork either. And no - I don't really have alot of input into which tests I get. They were quite happy to order the colonoscopy but I had to get upset and demand the upper endoscopy be done as well. This is after months of going back and forth to the doctor. This has been very frustrating. 

[Janet Denis]

This is what is says the tests were on my lab report. 

Deamidated Gliadin peptide Ab IgA+IgG;

Tissue Transglutaminase Ab IgA; IA
 

[trents]

So they did a DGP-IGA, a DGP-IGG and a tTG-IGA. One thing they should have done in addition to those was the total IGA to make sure you weren't low in that one and so getting suppressed scores on your tTG-IGA.

However, the endoscopy with biopsy is considered the gold standard for celiac diagnosis so if it was positive and in view of your strong family history of celiac disease combined with your classic symptoms there is not much question in my mind that you have celiac disease. 

Edited June 3 by trents

[Janet Denis]

Thanks. I think so too. I just got the biopsy results a few days ago so have just started my gluten-free journey. Hoping to feel better soon!