Tag Archives: potential celiac disease

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ICDS 2013: The Celiac Iceberg Revisited

The second to last session on day one of the 2013 International Celiac Disease Symposium (ICDS) was a talk entitled, “Melting the Celiac Iceberg-potential, latent, silent: to treat or not to treat?” I was very confused about these terms when I first came across them in the Celiac medical and research literature a few years ago.

“Silent” Celiac Disease refers to patients who have Celiac Disease (elevated Celiac antibodies on blood testing and abnormal small bowel mucosa on endoscopy and biopsy) but no outward symptoms (or at least, do not appreciate any abnormal symptoms). Many silent Celiacs are picked up when they are screened for Celiac Disease due to having a family member with Celiac Disease and/or being in a high risk category for Celiac Disease, i.e. having Type 1 Diabetes.

“Latent” or “Potential” Celiac Disease is the term for when a patient has abnormally high Celiac antibodies on blood testing but either normal, or almost normal, small bowel mucosa on endoscopy. Many with potential Celiac Disease have abnormal symptoms. Some patients with this problem are told they are gluten sensitive, some have been told that they may have “early” or “pre” Celiac Disease, some are told by their doctors that they can continue to eat gluten, and others are advised by their doctors to go gluten free. My understanding is that, in recent years, the word “potential” is preferred over the word “latent” to describe this group.

Dr. Daniel Leffler, from the Celiac Center at Beth Israel Deaconess in Boston, presented the case for the GF diet in patients with potential and silent Celiac Disease, while Dr. Riccardo Troncone, from Naples, Italy, presented the case against the GF diet in these populations. Here are some interesting points that were brought up during both sides of the debate:

Children with first-degree relatives with Celiac Disease (parents and/or siblings) should be screened for Celiac Disease every 2-3 years in the absence of outward symptoms. Many “silent” Celiacs who think they feel “fine” prior to diagnosis will notice improvement on the GF diet. The presenters reminded us that 60% of newly diagnosed Celiacs have atypical symptoms.

There are many types of tissue transglutaminase (TTG) antibodies. Type 2 TTG antibodies can attack the placentas of pregnant women, type 3 cause the skin problem of dermatitis herpetiformis, and type 6 can attack the brain and nervous system. As an aside (from another talk during the ICDS), the commercially available assays in the U.S. test for Type 2 only!

There is conflicting information of the risks to silent Celiacs who do not go gluten free. One study in 2006 (Metzger, et al.) showed that untreated silent Celiacs have an increased risk of mortality and cancer over a 10 year period. But another study in 2009 (Lohi, et al) did not show an increase in cancer for this group. As with many areas, more research is necessary.

According to Dr. Troncone, it is not known if untreated silent Celiac Disease is associated with the development of other autoimmune diseases. He did state that going GF does not improve blood glucose control in patients who have both silent Celiac Disease and Type 1 diabetes.

Dr. Leffler presented research that shows that up to 50% of potential Celiacs will develop full blown Celiac Disease over a 5 year period and reminded us that TTG antibodies can cause harm even if there are no intestinal changes. He also stated that in order to be diagnosed with “potential” Celiac Disease that one must have an abnormally high TTG antibody level on at least 2 separate occasions (this is to rule out a false positive on the initial test).

I felt that the take home message from this lecture/debate was that those with silent and potential Celiac Disease should be on the GF diet, but that much more research is needed. Per my notes, they recommended that silent Celiacs should be GF, but it was not explicitly stated that potential Celiacs need to be GF. My concern is that many potential Celiacs may actually have full blown Celiac Disease that was not picked up on biopsy (see my previous ICDS post for information on how biopsies can be done incorrectly and that the damage from Celiac Disease can be missed). I will update all of my ICDS posts once I can get my hands on the power point presentations from the lectures, which I hope is soon! We were unable to take photos of the slides and although I tried to write as quickly as I could, I will add in key information that I may have missed.

Also, as a total aside, I am thankful to the anonymous reader who has nominated me for the WEGO Health “Geek Health Activist” of the year award. I have never been so proud to be called a geek in my entire life!

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“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!

Reference:

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!