Celiac – Hard to Diagnose

Recent talk at CAOM meeting clarified how difficult diagnosis celiac disease is – with an average diagnostic delay of 11.7 years – and some approaches that could help

  • there are countries like Italy and Japan that screen all – the former finding a rate of 1/30
  • Usual serology testing relies on IgA levels – something that is 10-21 times more likely to be deficient – there ias no point in doing serology testing without first checking IgA levels for deficiency
  • Glowing stats for celiac screening tests were results found in well established celiac cases. In early cases, particularly in people who will instinctively reframe from eating gluten, the sensitivity is as low as 50% or less
  • In order to get a good tissue biopsy result, celiac victims need to be on a high gluten diet for (at best) 6 months – something that is usually not possible.
  • A stool test is an alternative – called Enterolab – sent by Fedex to Dallas Texas – but you need to be on a gluten diet for at least 3 month
  • For those on a gluten free diet,  tests done for tissue typing – HLA DQ2 and DQ8 testing helps suggest it is an issue. 95% of celiac cases are HLA DQ2 (versus 30% of the normal population; 5% of celiac have HLA DQ8. Not having these genotypes would eliminate celiac as a possibility but having it just triples your risk.
  • My worst widespread pain cases have all turned out to have celiac or wheat sensitivity issues. One who was biopsy tested positive, had previously tried a gluten free diet but did not do it well and noted no difference.
  • Among cases with diarrhea based irritable, 6 months of gluten free diet will cure 56% of cases:
    Clin Gastroenterol Hepatol. 2007 Jul;5(7):844-50; quiz 769. Epub 2007 Jun 5.
    Predictors of clinical response to gluten-free diet in patients diagnosed with diarrhea-predominant irritable bowel syndrome.
    Wahnschaffe U, Schulzke JD, Zeitz M, Ullrich R.  abstract here They found if HLA DQ2 was positive, the likelihood of response was 60% versus 12% if HLA DQ2 negative.  Celiac IgG antibodies were higher “normal” in responders.

Comment – Irritable bowel and widespread pain? – get a celiac screen done, consider HLA testing and maybe try a REAL gluten free diet (no soya sauce etc.) I suggest people look for diet info on the Canadian Celiac association site here: http://www.celiac.ca/

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