“Potential” Celiac Disease

I celebrated the 3-year anniversary of my Celiac diagnosis by attending a Celiac support group meeting in a nearby city. I was a bit hesitant to attend, as my initial experience at a Celiac support group meeting in 2010 was nothing short of a disaster (probably worthy of a blog post in itself, but in short, involved the woman sitting next to me eating a gluten-rich Subway sandwich and chocolate chip cookies throughout the meeting and getting her crumbs on me when she coughed.)

Despite my reluctance, I am grateful that I gave this other support group a chance. The guest speaker was a Gastroenterologist who is also board-certified in Integrative Medicine, so he seemed to have a true understanding of the effect of nutrition on our bodies’ healing.  He presented top notch information on Celiac Diease, and as he spoke I scribbled notes on a manila folder. Upon reviewing my chicken scratching, the phrase “Potential Celiac Disease” jumped out at me because it is a term that I have heard of but did not know much about.

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.

After living so long with undiagnosed Celiac Disease, I would be hard pressed to not recommend the gluten free diet for those with Potential Celiac Disease. We currently have no idea how high the real risk of Celiac Disease is for this group. I personally know that it is a risk that I would not want my own family members to take….whether or not they would take my advice is an entirely different question!


Prevalence and natural history of potential celiac disease in adult patients. Federico Biagi, Lucia Trotta, Claudia Alfano, Davide Balduzzi, et al. Scandanavian Journal of Gastroenterology. Posted online on March 19, 2013. (doi:10.3109/00365521.2013.777470)

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

9 thoughts on ““Potential” Celiac Disease

  1. Amanda

    This is really interesting. I think I’ve also heard some people call it pre celiac disease? Or maybe that’s something completely different.

  2. Jess Post author

    Hi Amanda,
    Yes, it is all a bit confusing. I believe that “potential” is now used instead of “pre” as “pre” implies that Celiac Disease will eventually develop, while “potential” means that it may or may not develop. There are documented cases of adults who have had abnormal celiac bodies (and no symptoms) who have had the antibodies appear and disappear mulitple times while eating a regular gluten containing diet. About a year ago I read a case report of one such man. He worked at a sandwich shop, ate a ton of bread everyday, and despite having elevated antibodies from time to time never developed celiac disease and never had symptoms of gluten sensitivity.
    To further confuse matters, there are the “latent” celiacs, who are the potential celiacs (positive antibodies, normal biopsies) without any symptoms. Then there are the “silent” celiacs who have full blown celiac disease (on both blood tests and biopsy) but absolutely no symptoms at all!
    Finally, there are those with non celiac gluten sensitivity, who develop adverse symptoms while on gluten, but have normal (or slightly elevated) antibodies, and normal biopsies. This is the group which I am trying to promote awareness of, because this effects from 6-10% of the American population.
    It’s enough to make my head spin!
    Thanks for reading!

  3. Anne

    What group do you attend? Is it open to anyone? I think you had told me….a Fox Valley one, possibly?

    1. Jess Post author

      Hi Anne,
      Yes, I have joined the Fox Valley Celiac group and it is very good. That is where I was introduced to Dr. Sodhi and was able to hear him speak. I think that it cost either $10 or $15 to join for the year, but it is worth it because they have good speakers and a well developed group. I have never returned to our local support group because it did not seem worthwhile after my first experience. If things have changed I would consider trying it again. Let me know if you’re interested in the FVC group and maybe we can drive down together. I am also planning on attending the International Celiac Symposium in Chicago in Sept and I believe that the FVC group has $ available to help people to be able to pay to attend.

  4. Pingback: The Intestinal Villous Blunting (Flattening) in Celiac Disease is often “Patchy” | The Patient Celiac

  5. amie

    Hello my daughter is 6 years old and tested high on two blood tests for celiac. She had an endoscopy with biopsies and was negative for celiac. She has occasional tummy troubles (abdominal pain, vomiting) the GI doctor she has seen isn’t sure what to diagnose her with and suggested genetic testing to check for the celiac gene, but i’m not sure what the point of that would be or if it would be worth it. I’m not sure what to do next. I have cut back on gluten with her I buy gluten free products when available but she does still eat some gluten. I’m not sure what to do next. Any suggestions would be helpful.

    Thank you

  6. Jess Post author

    Hi Amie,
    I am sorry that you are going through this.
    In Europe there are guidelines (ESPGHAN) for diagnosing celiac disease in kids without a biopsy (if I’m remembering correctly kids can be diagnosed with celiac disease if they have symptoms after eating gluten, abnormally high celiac antibodies on at least 2 occasions, are either HLA-DQ2 or DQ8 positive, and have their symptoms disappear once they go gluten free).
    A lot of biopsies are done incorrectly. If possible, you may want to get a copy of her biopsy results and make sure that at least 4 separate areas were biopsied including the duodenal bulb. A second opinion may help too. I am under the impression that many GI docs are starting to diagnose children with non-celiac gluten sensitivity after celiac disease has been ruled out, but there has been no long term follow up on what happens if kids with non celiac gluten sensitivity continue to eat gluten.
    Not sure if this helps or not…
    All the best to you and your family,

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