For a long, long time there has been debate about whether NCGS is real. Some say NCGS is just made up and gluten has nothing to do with the symptoms people are having. Others say NCGS is very real and a distinct disease from celiac disease. Even more say NCGS is on a continuum with the path leading directly to celiac disease.
Most often people with NCGS have symptoms similar to celiac disease when gluten is consumed. Gastrointestinal distress, fatigue, and headache are the most commonly reported symptoms. These symptoms go away when gluten is removed from the diet. Often patients with this issue will request a celiac test from their doctor. Many times this test will be negative, but the patient will press for an endoscopy. The pathology report from the endoscopy is often designated Marsh 0 or 1 and considered normal. Doctors report the patient does not have celiac disease and the patient is left feeling frustrated and disillusioned.
A new study has come out comparing almost 700 endoscopy results from patients with celiac disease, NCGS, and controls. The study found very subtle differences in the pathology between two groups.
The celiac damage was pervasive and distinctive.
The damage between control and NCGS was much more subtle. Villi heights were reduced, but not enough to take them out of the normal range. Crypt depths were increased, but not enough to take them out of the normal range. Intraepithelial lymphocytes (IEL’s) were increased but not enough to take them out of the normal range. The authors did have a significant discussion regarding the cutoff levels for IEL’s and if the current levels were appropriate.
The authors did discuss that these changes may be considered “microscopic enteropathies” but are not diagnostic for NCGS. Using the criteria uncovered in this study is not specific or sensitive enough to determine NCGS.
So, for all my NCGS friends, know that research is being attempted to tease out diagnostic criteria for NCGS to get you some answers. Here’s the article for more information…. https://www.mdpi.com/2072-6643/14/12/2487/htm