#Coeliac Testing Unreliable and OutDated?

Reliance on the ‘gold-standard’ biopsy is keeping gluten sensitives ill and genetic testing is the modern way to test. I have said that for ages and I noticed a piece here that is basically saying the same thing: How to test for celiac disease and why it’s almost always done incorrectly.

The writer points out, quite rightly, the folly in ignoring symptoms, blood results etc etc when a biopsy comes back negative. If the biopsy finds no villi damage, the diagnosis of coeliac disease can’t be given officially. That’s daft when you think how much intestine there is to biopsy and that we only take tiny patches AND that villi damage is the end of the line of coeliac disease and finding it shows that the damage has been going on for years. It could have been stopped if the genetic tendency and case symptoms etc had been put together and advice given to remove gluten from the diet. We really are leaving it right ’til the last minute to diagnose, when the damage is already done.

“A few months or years after your “false negative” diagnoses, once your intestines have sustained enough damage and you re-do a biopsy showing completely flat “villi” (which means you are no longer absorbing nutrients normally) then your doctor can diagnose you with Celiac Disease. Of course, by then you may have triggered other issues including nerve damage leading to MS, organ failure leading to diabetes, neurological issues very often meaning clinical depression. The list goes on and on this list goes and your risks of mortality more than double.”

How daft is that?

“Genetic testing allows you to prevent triggering Celiac Disease in the first place by warning you that you are genetically susceptible and that you need to avoid gluten. The specific genes for Celiac Disease are: HLA-DQ2 and DQ8.”

Just because you have the genes present doesn’t necessarily mean you will trigger coeliac disease, of course, and we need to make that clear. BUT, if the person has chronic illness, especially auto-immune, and even if their blood results are negative since we only look for gliadin antibodies, then that person should come off gluten in my view at the very least for a trial.

Of course, I would go further with the gene testing and advise looking for all the DQ genes related to CD and non-coeliac gluten sensitivity (NCGS). I have both, for example, and someone I tested yesterday had 4 non-coeliac genes on the most predictive location. So, just because DQ2 or 8 aren’t present, it doesn’t mean gluten isn’t a problem for you. More people have NCGS than CD and, in my opinion, CD is just one of the illnesses caused by NCGS: migraine, depression, type 1 diabetes being others, to name just a few, as the writer does above.
Anyway, nice to see other people saying the same thing. We just need to get the genetic testing more comprehensive now and stop just looking for DQ2 and 8 only. Look here for more on correct testing and the issues around it: Gluten Tests.

Source: CoeliacsMatter forum Aug 12

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2 thoughts on “#Coeliac Testing Unreliable and OutDated?

  1. […] advice for anyone with chronic fatigue I come across is to look for gluten sensitivity using the gene test, EVEN if the (as we now suspect) unreliable coeliac test comes back negative. It may not be the […]

  2. […] Have a read of the report summary here.  If you want to read why I don’t think the biopsy should be 100% relied upon, see here. […]

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