New research has scientists calling  for all family members of known celiacs to get the blood test for celiac disease.  As we all know, so many family members say they feel fine, or their frequent trips to the bathroom are just normal for them.  But what this research found was that “asymptomatic” family members improved on the diet.

The Celiac Research:

Published in the July 2011 issue of Gastroenterology and Endoscopy News, Finnish researchers set out to “determine the importance of testing relatives of celiac disease patients.”   They tested more than 3,000 people who appeared healthy but had celiac in the family.  Of 148 who were positive for endomysial antibodies, 40 were “randomized to follow a gluten free diet for one year or to continue with their normal gluten-containing diet.”

That group of 40 had biopsy and blood testing at the beginning of a one-year study and and then again at the end of it.  The patients also filled out Gastrointestinal Symptom Rating Scale (GSRS) and a Psychological General Well-Being questionnaires.  These were done before the study and again after.

According to the research the patients who went gluten free improved on all “parameters”.  But there was no big change for those who stayed on a regular diet. The survey/questionnaire scores also improved from the gluten free group.

After the trial ended, 85% of the patients were willing to continue the gluten-free lifestyle.

Call for Family Testing

According to the article, the current familial testing guidelines for celiac disease include:

  • North American Society for Pediatric Gastroenterology, Hepatology and Nutrition recommends children with celiac symptoms get the blood test for “antibodies to tissue transglutaminase.”
  • American Gastroenterological Association 2006 guidelines “called for testing to be ‘considered’ for all symptomatic individuals at particularly high risk for celiac disease…Testing may be ‘selectively considered’ for first- and second-degree relatives of patients with celiac disease”

The researcher who presented the findings, Dr. Katri Kaukinen of Finland, said “Based on our results, an intensified serologic screening of at-risk populations of celiac disease is encouraged.”  Another expert, Dr. Cynthia W. Ko of the University of Washington-Seattle, who was not involved in the study remarked, “this study does suggest that screening of first-degree relatives of known celiac patients is beneficial and may improve the quality of life of those people who have positive serologies.”

Dr. Ko also admitted that some people with mild symptoms, adjust and think that this is “normal” for them and that “it is only after recovery that they realize they were symptomatic.”

One final note:  a placebo effect could be in place with this study as those on the gluten free diet, knew they were on it.


I think this is a very interesting study. If you’re trying to get family members tested, send them this article and maybe you can talk them into it.

Source: you may need to register for this article, at the link above but registration is free.



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2 Responses to “Researchers Call for all Family Members of Celiacs to get Tested”

  1. Thanks for this great post, Amy! Love reading your blog!

  2. The American Gastroenterological Association (AGA) also published a study on why celiac disease is so under-diagnosed. It’s amazing what they discovered in the study. Not being tested is one of the reasons, but another is the inaccuracy of how they test. I have a summary of the study posted at, if you’re interested.

    Great post! Together our community is bringing about awareness! Yeah!

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