I’ll be honest, I really haven’t heard of “potential celiac disease”  and if I did read it somewhere I was not thinking of it as a diagnosis, but rather as someone who is genetically predisposed to having celiac disease.  But a new study published this week made me wonder.  And yes, it is a real thing.  This study and other recent research shows what it is and why you should care.

What is “Potential Celiac Disease”?

A 2007 study archived by the National Institutes of Health said, “Potential celiac disease is characterized by a normal duodenal mucosa despite high intraepithelial lymphocytes count and/or positive endomysial antibodies while on a gluten-containing diet.” Is your head spinning yet?

This summer, a study reported by the  National Foundation for Celiac Awareness defined in children as “a term used to identify children with positive serology for celiac disease but a normal small intestinal biopsy”.  Okay…I’m starting to get it.

And just yesterday the Journal of Proteome Research reported it this way,”people with a positive blood test for the condition but no positive biopsy usually are diagnosed as ‘potential’ celiac patients”.  If you’re familiar with celiac disease, that really explains it.

If you’re unfamiliar with the diagnosis of celiac disease there are two ways doctors test for it.  First there’s a blood screening, if that comes back positive then you go for the gold-standard, best test for celiac:  the endoscopy and biopsy of the small intestine.  In this case, a “potential celiac disease” diagnosis means you’ve tested positive in the blood screening, but doctors saw no damage when they did the biopsy of the small intestine.  Click here for more information on diagnostic testing.

Why should you care?

Well for one, you should care if you or someone you care about has ever received a positive blood panel and a negative biopsy and was shooed out the door  and told celiac was ruled out completely.  Because the study released yesterday says people with potential celiac disease should be treated like they have celiac disease.

“…the scientists found that these patients [with potential celiac disease] have the same distinctive metabolic fingerprint as patients with full-blown disease who do benefit from gluten-free diets….’Our results demonstrate that metabolic alterations may precede the development of small intestinal villous atrophy and provide a further rationale for early institution of gluten-free diet in patients with potential celiac disease,'” researchers said.

This study supports research from this summer that the NFCA reported.  It found that in children, a third of potential celiac disease patients have damage to the intestine within 3 years.

Seems pretty clear?  Sure.  But remember the aforementioned 2007 study?  That one ultimately did not recommend going gluten-free.  That study concluded, “Potential celiac patients can be maintained on a gluten-containing diet providing they are closely followed up.”

Conclusion

This definitely is something to take into consideration during the diagnostic process. I see it two ways:

1.   The 2007  study seems to say stay on gluten so you’ll eventually know for sure and “get it over with”?  Which eliminates the “gray” area left with the “potential celiacs” going gluten-free and wondering if this is really what ails them.

2.   But the more recent research is saying celiac disease is going to happen to many of these patients.  And even more specifically, the research published yesterday recommends the gluten-free diet for all people with a potential celiac disease diagnosis.

We know if you’re going to get celiac disease, the malabsorption of nutrients while you figure out what’s wrong, can cause so many other health issues:  osteoporosis, infertility, bad teeth, organ dysfunction, cancer and more.  What you don’t want to have happen is allow celiac disease to fester and cause irreparable health damage before getting an official diagnosis.

So what do you do if you or someone you care about has “potential celiac disease”?  I think it’s a personal decision– nip it in the bud with a gluten-free diet, or wait to see what happens.

Disclaimer:  I am not a medical professional.  Please consult your physician about questions related to this research.

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3 Responses to ““Potential Celiac Disease” Could this be You?”

  1. this is a terrific article… thank you so much!

  2. I am experiencing the “you may have a gluten sensitivity & it won’t hurt you to eat gluten” diagnosis. It is not a good place to be. Any updates on this article since the 2007 study came out?

  3. As of this time the research is still continuing on biomarkers for a GS test. Dr. Fasano’s book Gluten Freedom is a great resource for the latest information in this area.

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