What We Know About Gluten Sensitivity | Rachel Begun, MS, RD


I attended the 15th International Celiac Disease Symposium in Chicago last week.  And without a doubt the hot topic was non-celiac gluten sensitivity (NCGS).  The bottom line is that what we know about NCGS is that we don’t know much at all.

The experts say where we currently are with NCGS is where we were with celiac disease 30 years ago.

NCGS is the current diagnosis provided for people who don’t have celiac disease or wheat allergy (ruled out through diagnostic testing) yet they experience negative symptoms when eating gluten and those symptoms subside when taking gluten out of the diet.

This is the diagnosis given when we don’t even know yet what kind of condition NCGS is.

Back in 2011, Dr. Alessio Fasano–one of the world’s leading gluten-related disorders researchers–led a study published in BMC Medicine that validated NCGS as a legitimate condition distinct from celiac disease, as no gluten antibodies are produced and there is no damage to the intestines.

Just this year, researchers from Australia published a study in Gastroenterology that questions the very existence of gluten sensitivity as a distinct entity and raises the possibility that other components of low-gluten diets may actually be the mediator(s) for improving gastrointestinal symptoms in those who self-diagnose for having NCGS.  I’ve heard many call this a landmark study, and I agree.

What has been observed with NCGS:

  • It is a distinct condition from celiac disease. The body doesn’t produce antibodies to gluten nor is there damage to the villi of the intestines (like we see in celiac disease)
  • It overlaps with celiac disease, IBS and dysbiosis
  • It is a diagnosis of exclusion.  If celiac disease and wheat allergy are ruled out through testing, an elimination diet is done to determine if removing gluten from the diet alleviates symptoms

What we don’t know and are trying to determine about NCGS:

  • Is NCGS a separate clinical identity or does it overlap with or is the same condition as IBS?
  • Currently, we don’t know the biomarker for NCGS
  • Currently, we don’t know if there is a genetic marker for NCGS
  • What is the trigger for NCGS?  Is it really gluten?  Something else contained in wheat?  Something else entirely?
  • What is the prevalence of NCGS?  Estimates have been thrown around, but if we don’t have a biomarker or a genetic marker than we really can’t provide a true estimate
  • What are the consequences of non-compliance with the gluten-free diet in NCGS?

That’s how research works. We realize what we don’t know and the scientific community conducts the research to try and figure out the unknown.

We may not know much about NCGS right now, but I can assure you that the scientific experts in gluten-related disorders are working fast and furious to answer the above questions.  It’ll take many years, but we’ll get there.

Stay tuned…





This entry was posted in Celiac Disease, Gluten Free Lifestyle, Gluten Sensitivity, Research and tagged , , , , , , , , . Bookmark the permalink.

4 Responses to What We Know About Gluten Sensitivity

  1. Great post, Rachel! Sounds like it was a great symposium. Did they share any new statistics for how many people are estimated to have NCGS?

    • Rachel Begun says:

      Thanks, Jessica. That’s a great question! Actually, it seems they are now holding back and providing estimates of gluten sensitivity prevalence. Without a biomarker or genetic marker, it’s really hard to provide a true estimate of prevalence. The scientific community is working really hard to find a biomarker for gluten sensitivity, because we can learn so much from that along, including making better predictions on prevalence.

  2. Our food supply is incredibly adulterated.
    Consider that over 300 million pounds of gluten is added to food every year. The farm bill makes gluten a very cheap ingredient with many uses. I often wonder wonder how much the farm bill is distorting our food supply and contributing to disease?

  3. Pingback: The Gluten Free RD – by Gabe Cifolelli (grc5022) | NUTR 360 Spr 2014

Leave a Reply

Your email address will not be published. Required fields are marked *