This site is intended to share the answers I found in my quest to understand celiac disease with family,  friends, and others who may be trying to find the answers I too have been seeking. This is a compilation of answers from various sources (clearly listed and linked prior to the quotes).

What does the term “potential celiac” mean?

(Source: University of Chicago Medicine Celiac Disease Center: FAQ – What does the term “potential celiac” mean?)

“A patient who is a “potential celiac” has positive serology (including the highly specific anti-Endomysium antibodies), possibly has symptoms, and has a negative biopsy. A potential celiac may or may not be put on a gluten-free diet, though we typically lean toward recommending the diet even in those potential celiacs who have no symptoms. Early data indicates that, left untreated, celiac disease will develop in the majority of cases. June, 2017″

Should one turn to a gluten free diet?

(Source: Potential Celiac Patients Show Signs of Disease – Patients who are diagnosed with ‘potential’ celiac disease appear metabolically similar to those who actually have the disease, researchers Kristina Fiore, Staff Writer, MedPage Today, 12.17.2010

(links to this abstract: Are Patients with Potential Celiac Disease Really Potential? The Answer of Metabonomics)

“Patients who are diagnosed with “potential” celiac disease appear metabolically similar to those who actually have the disease, researchers say.

“Among 29 “potential” patients, 24 were classified as having the disease on metabonomic analysis, Ivano Bertini, MD, of the University of Florence in Italy, and colleagues reported in the Journal of Proteome Research.

“‘Our results demonstrate that metabolic alterations may precede the development of small intestinal villous atrophy and provide a further rationale for early institution of a gluten-free diet,’ they wrote.

“In genetically susceptible patients, celiac disease is triggered by ingestion of gluten, a protein found in wheat, barley, and rye. It has been shown to have a well-defined metabonomic signature, the researchers said.

“Often, its clinical symptoms will disappear with a gluten-free diet.

“Yet the condition remains underdiagnosed, experts say, partially because some patients who have immunological abnormalities don’t show clear celiac disease on jejunal biopsy.

“So to determine the metabolic profile of these potential patients, the researchers used magnetic resonance metabolic profiling to analyze the biochemical markers in the blood and urine of 61 patients with celiac disease, 29 with potential disease, and 51 healthy controls.

“They found that those with potential disease largely shared the same profile as those with the confirmed disease, and that the biochemical markers in both groups differed significantly from those of the healthy individuals.

“For instance, of the 29 potential celiac patients, 24 were classified as having the disease while five were classified as controls.

“The researchers saw hardly any differences in serum metabolites between overt and potential disease. They said it appears that in untreated patients, glycolysis is somehow impaired, which explains both a lowering of lactate levels and an increase in glucose levels.

“On the other hand, there were more metabolites in urine that differentiated between overt and potential disease, the key areas being those originating from gut microflora. The researchers said it has been reported that particular bacterial strains may work in conjunction with gluten to cause an increased immune response that is responsible for the development of celiac.

“The researchers noted that the similarity in serum and dissimilarity in urine markers “allow us to hypothesize that while the alterations in the urine profile may follow intestinal damage, gluten intolerance exists as such before an evident intestinal damage occurs.”

“Finally, the researchers performed a citrulline assay, which revealed significantly lower levels in potential patients than in controls. Yet interestingly, endoscopy didn’t show any sign of villous atrophy, they said (P<0.001).

“The data suggest that “potential celiac disease subjects are, indeed, not potential at all. They … appear metabolically similar to overt celiac disease … without any histological evidence of intestinal damage.”

“If this hypothesis holds, the researchers wrote, “the core result from our investigation would be that metabolomics can detect celiac disease also when its clinical manifestation is not fully evident.”

“They also emphasized the importance of a gluten-free diet in these potential patients.”


Review of a lecture on Potential Celiac Disease on The Patient Celiac: “Potential” Celiac Disease (Linked to abstract: Prevalence and natural history of potential celiac disease in adult patients)

“Potential Celiac Disease (PCD) is diagnosed when a patient has abnormally elevated TTG IgA and Endomysial (EMA) antibodies on blood screening tests (the 2 main celiac antibodies) but normal bowel mucosa on biopsy. There is no evidence of the villous blunting seen in Celiac Diease (CD).  PCD often pops up when people who are at high risk for celiac disease are screened, such as first degree relatives of Celiacs, Type 1 diabetics, and/or patients with other autoimmune diseases. Many patients with PCD have no symptoms and do not feel ill from eating gluten. It is essential for the Celiac screening to be done while a patient is still on a gluten-containing diet. If a person is already gluten free when tested it is difficult to tell if the positive celiac antibodies and normal biopsies are from PCD v. full blown CD which is already being treated.

“There is a lot of controversy over what to do if a patient is diagnosed with PCD. Some experts believe that if Celiac antibodies are elevated, that one should go gluten free, even in the absence of symptoms. Others believe that asymptomatic potential Celiacs should continue on a gluten containing diet, with close monitoring and follow-up of with small bowel biopsies at regular intervals. The rational behind this 2nd line of thought is that a lot of patients with PCD may never actually go on to develop full CD.

“Unfortunately, Potential Celiac Disease has been so under-researched that we really don’t have good information on what percentage of “Potential” Celiacs become actual Celiacs.

“A group of researchers in Italy recently studied 47 patients who were diagnosed with PCD. They found that those with PCD did not differ from those with CD in terms of age of diagnosis, digestive symptoms, anemia, or other associated problems. They broke the 47 PCD patients into 2 groups for analysis:

“Group 1: 23 patients who immediately went gluten free after being diagnosed with PCD, most due to digestive and other autoimmune complaints. Follow-up biopsies to screen for CD could not be performed since all of these patients were GF.

“Group 2: 24 patients who stayed on a gluten-containing diet after being diagnosed with PCD. 14 had repeat biopsies at 1 year. Of these 14, 5 had villous blunting (full celiac disease) and 9 did not. Of the 9 who had normal biopsies at 1 year follow-up, 4 went GF due to symptom development and 5 remained without symptoms and had normal biopsies 3 years later.  The 10 patients with potential celiac disease who remained on a gluten-containing diet and refused follow-up biopsies are described as being in “good clinical condition,” however 5/10 had anemia, 3/10 had thyroid disease, 3/10 had diarrhea, 1/10 had alopecia, and 1/10 had rheumatoid arthritis on follow-up. While these problems might be perceived as being better than having full blown Celiac Disease, I wonder if so many symptoms would be present in this group of potential Celiacs had they gone GF.

“The concept of non celiac gluten sensitivity was largely ignored in this paper. There is also no comment on how many intestinal biopsies were taken. The speaker that I listened to last night reiterated that at least 4-6 biopsies need to be taken from the duodenum in order to confirm a diagnosis of CD. If less than 4-6 biopsies are taken, CD can be missed.

“In summary, we are in a gray zone as to how to advise others with “potential” celiac disease in terms of the gluten free diet. If one has PCD and feels lousy after eating gluten, then the decision to go gluten free is an easy one. For those who have PCD but do not have any ill effects from eating gluten (at least outward symptoms), I can see how the decision may be quite a bit more difficult.