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!

9 thoughts on “ICDS 2013: The Celiac Iceberg Revisited

  1. Gill

    Hello Jess,

    I don’t always take the time to respond to your posts but I read every single one eagerly because without fail you give me answers to questions which have puzzled me for years. For example, now I know why my TTG done five years ago when I was diagnosed with osteoporosis was “normal”, yet several years ago I developed severe dermatitis herpetiformis and a myriad of other equally miserable symptoms.

    Five months of being totally GF (and dairy, soy, grains and corn free) and I have my quality of life back after 4 decades of missed diagnosis! A lot of what I have learned over the last five months about this condition has come from you, and Dr Leffler’s book “Real Life with Celiac Disease”.

    Thank you so much for the incredible gift you are giving to your fellow strugglers.

    1. Jess Post author

      Hi Gill,
      Thanks for writing! I am so glad that your quality of life has improved so much since going GF. You really seem to be a poster child for a “potential” Celiac who actually had full blown Celiac Disease the entire time. Wow. A little off topic, but Dr. Peter Green did mention during the ICDS that anyone with dermatitis herpetiformis has Celiac Disease (no need for biopsy in these cases!)
      Also, thank you for the recommendation for Leffler’s book. It is going to go on my “to read” list right now. Does he have Celiac Disease himself?

  2. Pingback: 2013 International Celiac Disease Symposium Poster Highlights | The Patient Celiac

  3. MJ

    I have just discovered your blog and it is awesome! Dr. Leffler is my doctor and he is amazing. I think his book (co-written with nutritionist Melinda Dennis who has Celiac disease) is the best book out there on the subject. Truly a must read for every Celiac.

    1. Jess Post author

      Hi MJ,
      You are so lucky to have Dr. Leffler as your Celiac doctor, and yes, I know that I need to read this book. I have this super long “to read” list that keeps growing and their book is on it. I didn’t realize that Melinda Dennis is also a Celiac patient. Have you been able to meet her as well?
      I really appreciate your kind words about my page. Please let me know if there are any specific topics that you think would be helpful for me to review. Hope to hear for you from time to time too!

  4. Meredith

    I have partial IgA deficiency. My last test listed my level around 34. I know that IgA deficiency is more common n people with celiac and believe the reverse is true also. I don’t have many celiac symptoms, but I do have ADD and depression. My gastrointestinal symptoms are nonexistent to mild, but I’ve always had a lot of gas. (I do wonder if I’ve normalized what it feels like for me and if I really do have symptoms that I don’t notice.) My stomach also grumbles a lot, and people notice it when it is quiet.

    I know that it’s recommended that people being tested for celiac should also be tested for IgA deficiency; but for the life of me, I can’t find any information anywhere about whether people with IgA deficiency should be routinely screened for celiac. Are there no recommendations regarding this? I’m adopted, so I don’t have a family history I can go by. I’ve considered going gluten free to see if I feel any better, but I know that could make it difficult to get a diagnosis later. I guess I could try it, do a gluten challenge, and then request a test from the doc; but I wish there was some way I could just get a direct to consumer tTG IgG test to ease my mind, but I don’t think that exists. I’m pretty sure my doctor won’t order it because I also suffer from anxiety and probably just thinks I’m being a hypochondriac (which I am a tiny bit).

    I know I don’t have any nutrient deficiencies because I was tested for that when I had some major intestinal issues a year ago. The doc decided it was probably just a bug (that lasted about six weeks or so) and did not test for celiac at that time. My calcium was slightly low the first time, but was normal with the next test, and everything else was normal. My inflammatory levels were also checked, and those were also all normal. My white counts were a little low but not worrisome, but I’m pretty sure that’s actually normal for me.

    In one of the papers I read while browsing, I saw that silent forms of celiac are more common in people with IgA deficiency. Maybe I should just quit worrying and stop searching out so many trials online…

    1. Jess Post author

      Hi Meredith,
      Based on this recent study on the association between selective IgA deficiency and autoimmune diseases, you should probably be tested. I’ve cut and paste the abstract below.

      J Clin Immunol. 2014 Mar 2. [Epub ahead of print]
      Association Between IgA Deficiency & Other Autoimmune Conditions: A Population-Based Matched Cohort Study.
      Ludvigsson JF1, Neovius M, Hammarström L.
      Author information
      To examine autoimmune disorders in patients with IgA deficiency compared with the general population.
      Nationwide prospective population-based cohort study. Through six university hospitals in Sweden we identified 2100 individuals with IgA deficiency (IgA levels < .07 g/L) diagnosed between 1980 and 2011. Each patient with IgA deficiency was matched on age, sex, place of residence, and year of diagnosis with up to 10 general population controls (n = 18,653). Data on nine autoimmune disorders were retrieved from the Swedish National Patient Register (including inpatient and non-primary outpatient care). Autoimmune disorders were defined as having at least two visits listing the relevant international classification of disease (ICD) code as main diagnosis. Prevalences and prevalence ratios (PRs) were calculated. RESULTS: Individuals with IgA deficiency more often had celiac disease (6.7 % vs. 0.19 % in controls) and type 1 diabetes (5.9 % vs. 0.57 %) corresponding to a 35-fold higher PR for celiac disease and 10-fold higher for type 1 diabetes. Also for the other autoimmune diseases did we see statistically significantly elevated prevalences and PRs (juvenile idiopathic arthritis (0.76 % vs. 0.09 % in controls, PR = 8.9), systemic lupus erythematosus (0.57 % vs. 0.06 %; PR = 8.9), inflammatory bowel disease (3.9 % vs. 0.81 %; PR = 5.0; specifically Crohn's disease (2.4 % vs. 0.42 %; PR = 5.7) and ulcerative colitis (1.7 % vs. 0.46 %; PR = 3.9)), hypothyreosis (0.76 % vs. 0.16 %; PR = 4.6), rheumatoid arthritis (2.2 % vs. 0.50 %; PR = 4.5), and hyperthyreosis (1.7 % vs. 0.43 %; PR = 3.9), but not with myasthenia gravis (0.05 % vs. 0.02 %; PR = 3.0). CONCLUSIONS: Individuals with IgA deficiency have a higher prevalence of several other autoimmune disorders.

  5. Meredith

    Thank you. I think I may get it checked out, and it would be helpful to bring something like this to my doctor.

    1. Jess Post author

      You’re welcome Meredith.
      If you search on pubmed.gov you will be able to find the actual abstract to bring to your doctor. I’m sure she (or he) will appreciate that you’ve done your research!
      Good luck to you.

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