Why #Coeliac Tests Cannot Be Relied Upon: A Story

I read this quick story today which reminded me of all the times I have heard people tell me that they have come up negative on standard coeliac tests and therefore assume they cannot have a gluten problem.

This is an American mum who has DQ2 and DQ8 genes, the ones most associated with coeliac disease risk. She says her sons have grown up with ‘sensitive stomachs’ and she had both tested when she was diagnosed coeliac herself.  Both were negative.

We go forward a few years until one of the sons comes home from college really poorly. Mum takes him off wheat at least and tests his gene pattern when he feels so much better off it. He has inherited the genes from his Mum and is now much better following a gluten free diet despite the negative standard coeliac results.

This is becoming a familar story. It’s also what happened to me.

I am convinced that everyone with ‘sensitive stomachs’ or ‘IBS’ as we like to call it should be gene tested for gluten illness even if they have received negative blood tests for coeliac disease. If the genes are positive and the person feels better with the removal of gluten, that should be enough of a diagnosis for gluten illness somewhere on the spectrum.

Some people will have a severe gluten illness like me. I am also convinced that the longer the time a person eats gluten believing they do not have a gluten problem due to tests (me again), the worse the damage can be.

Some people, happily, will not be severe and will probably be able to heal a lot of the damage done by keeping off gluten and healing their gut over several months. I think the earlier we can diagnose a problem, the less damage is done and the easier it is for the person to re-heal and avoid more problems down the line.

I wish someone had said this to me when I was in my early 20s! Well done to that Mum.

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2 thoughts on “Why #Coeliac Tests Cannot Be Relied Upon: A Story

  1. This is an interesting subject. I was in and out of hospitals for a long time after having negative test results on the coeliac blood test. The genetic blood test however was positive, and the immunoglobulin tests were also showing strong indications, but to the medical staff this was not a strong enough indication (even along with all my other symptoms).

    In the end I turned out to be coeliac, but it took many months of unnecessary pain before it was discovered. All because my blood test was negative.

    Thanks for highlighting this issue.

    -Kristine

    • Breaks your heart, Kristine, doesn’t it? All for the want of fitting us into a very narrow and, in my view, plain wrong, diagnostic set of criteria. Glad you got there eventually 🙂

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