Hello. Need advice for advocating for myself. (UK)

[beeboschmeebo82]

Hi! I've joined the forum today for advice. I've all the symptoms of celiac, but my blood test IGA level came back normal. 

I understand this can happen and you still have celiacs? What referral and test do I need to ask my GP  for next? Is it a gastroenterolgist? What other tests can they do next? 

Has anyone else here had their bloods come back normal but then gone for further tests and been found to have celiacs?

I'm just so fed up of years and years of being fobbed off. I want a definitive answer and a little bit of hope that I can start to feel better. 

[trents]

Welcome to the forum, @beeboschmeebo82! Do you refer to the tTG-IGA test? Was the total IGA level also tested? I total IGA level is low, then the tTG-IGA test can throw a false negative.

You could also have NCGS (Non Celiac Gluten Sensitivity) for which there is no test but it shares many of the same symptoms with celiac disease and is 10x more common. The antidote is the same: lifetime abstinence from gluten.

But to answer your question, yes, we have quite a few people who join this forum with negative blood tests but positive biopsies. It is not that unusual.

By any chance, when you had the blood draw done for the test, were you already cutting back on gluten?

[Scott Adams]

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[cristiana]

Hi @beeboschmeebo82

It is always good to meet another British person on this forum - there are quite a few of us!  

Certainly, a small percentage of coeliacs have negative blood tests,  your GP may or may not be aware.   So, to properly diagnose coeliac disease, or to rule it out, people often have to take on the role of self-advocate in these circumstances and unfortunately it can be quite a journey. 

A friend of mine was in this position, she had symptoms but negative blood tests.  However, her dad was a diagnosed coeliac, so had strong reason to suspect that she might just be one of those coeliacs who will never test positive.  In the end, she decided to go private and pay for a private gastroenterologist, who performed an endoscopy.  It turns out she was not a coeliac but had gastritis and a hiatus hernia.  So even if you don't have coeliac, you may have something else going on like that, which would still be worth investigating.

If private health isn't an option, and you feel you are getting nowhere with a referral to a gastroenterologist,  the Coeliac UK website contains UK specific advice on how to best navigate the system - it is well worth reading.  (see link below for what to do if you have negative blood test results).  

A couple of notes of caution, however.  When you are referred to a gastroenterologist, be sure to specifically ask them to test you for coeliac disease.  Tissue samples will need to be taken as coeliac disease isn't always visible to the camera.  Another friend of mine who is wheat intolerant was given an endoscopy.  I asked her what they checked for, and it appears no samples were taken,  by the sounds of it they simply checked to see if the stomach was inflamed and for ulcers.

Also, bear in mind you will need to be eating the equivalent of two slices of glutinous bread or the equivalent for about 5-6 weeks before a blood test, to show the right antibodies.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/if-your-tests-are-negative/?&&type=rfst&set=true#cookie-widget

Cristiana

 

Edited March 14, 2024 by cristiana

[trents]

The "gluten challenge" guidelines have recently been under revision to advocate for more intense exposure to gluten leading up to the either the blood antibody testing or the endoscopy/biopsy. I would recommend 6 slices of wheat flour bread daily (or the gluten equivalent) for at least two weeks. It is now felt that earlier gluten challenger guidelines were not affording intense enough exposure to give reliable test results.

Edited March 14, 2024 by trents

[cristiana]

@trents   That's really interesting, thank you for the update.  On this side of the Atlantic it seems Coeliac UK are still with the old system - will keep an eye on their website for changes.