ID-100114989

2013 International Celiac Disease Symposium Poster Highlights

Although I did not allot enough time to check out all of the posters of abstracts that were on display at the International Celiac Disease Symposium (ICDS) in person, all of us received a spiral bound book that contained the hundreds of scientific posters that were presented. Abstracts are summaries of new research studies, and in many cases, they have not yet been published in a journal. I have started to review the book of abstracts that I received from the ICDS and there are some abstracts that are truly fascinating. We’ll hopefully hear more about these studies in the future as they get published in journals.

Here is a brief synopsis of five of the most interesting studies that I’ve been reading about:

1. “Nine years of follow-up of potential celiac disease in children.” A group of researchers from Naples, Italy (Aurrichio, et al) followed 156 with potential celiac disease who were not on a GF diet. Potential celiac disease, as I discussed here, is when a patient has abnormally high celiac antibodies on blood screening, and often symptoms, but a normal intestinal biopsy. The management is currently controversial. In this study, over a 5-year period, 46.8% of the children with potential celiac disease developed full-blown celiac disease.

2. “Celiac disease detection in asymptomatic children of 2 and 11 years old in a primary care health center using a transglutaminase antibodies quick test.” A Spanish team (Vallejo, et al) screened groups of 2 and 11 year olds for celiac disease in an outpatient clinic using rapid tests. 2% of the 2 year olds had confirmed celiac disease, and 1.5% of the 11 years had celiac disease. The overall rate of celiac disease in their population was 1.7%, which is higher than previously described.

3. “Absence of HLA-DQ2 and HLA-DQ8 does not exclude celiac disease in Brazilian patients.” HLA DQ2 and DQ8 are the 2 main celiac disease genes and are the ones that are currently tested for by most U.S. laboratories. In this study, a Brazilian team (Kotze, et al) performed gene tests on 101 patients with biopsy confirmed celiac disease. They found that 9 (8.9%) of their patients with celiac disease were DQ2 and DQ8 negative. They suspect that this is related to having such an ethnically diverse population in Brazil.

4. “Neurological dysfunction in patients with newly diagnosed celiac disease: a large prospective study.” Dr. Hadjivassiliou and team from the UK performed neurological evaluations on 73 patients with newly diagnosed celiac disease. 63% complained of neurologic symptoms; the most common were frequent headaches, problems with balance, and sensory symptoms. 32% had abnormal white matter lesions on MRI scanning and 43% had abnormal spectroscopy of the vermis of the cerebellum. The cerebellum is the part of the brain involved in balance and posture.

5. “Potential or definite celiac disease: push enteroscopy changes the diagnosis.” A celiac research team from the UK, lead by Dr. Eross, evaluated 16 patients with “potential” celiac disease. Potential celiac disease, as discussed above, is the term for when a patient has abnormally elevated celiac antibodies but no evidence of celiac disease on small bowel biopsy. They found that when their original duodenal biopsies were re-reviewed and biopsies of the jejunum (2nd part of the small intestine that is not typically biopsied when a patient is evaluated for celiac disease) were performed that 15 of the 16 patients actually did have celiac disease. They recommend that a diagnosis of potential celiac disease can only be made if the jejunum has been evaluated by biopsy.

Please let me know if you are interested in reading more about the abstracts that were presented at the ICDS poster session, as there are literally hundreds more that I can summarize for you. Also, I would love to hear about any interesting research that you have stumbled upon!

7 thoughts on “2013 International Celiac Disease Symposium Poster Highlights

  1. Lee Jenkins

    Hi, Thanks for the work and useful information you post. I was diagnosed with Coeliac Disease 16 years ago. I have since found that I am also intolerant to salicylates, amines and glutamates. I understand it’s not uncommon when you have one food intolerance to also have others. However I am finding it difficult to access information, support and recipes and wondered if you, or others who belong to this forum, have any information they could share with me. Many thanks, Lee

    1. Jess Post author

      Hi Lee,
      Thanks for writing. I agree that there seem to be many of us with both celiac disease and multiple food intolerances. I really hope that this is something that the celiac research experts will eventually study. Right now it seems like we are all finding each other and swapping stories on the online forums and webpages. I am unable to eat gluten, soy, and foods and beverages with sulfites. I have actually found the most support in some Facebook groups that for each food intolerance, i.e. there is one group that is called sulfites no more that has been really helpful as I’ve tried to navigate the sulfite-free life. Yasmina, the Low Histamine Chef, has some great recipes and resources on her blog as well, although I am not sure whether or not she restricts or limits salicylates and glutamates like you have to. Her website is http://www.thelowhsitaminechef.com. I will let you know if I come across any other resources, but FB has been very helpful for me. I hope that others will read through this post and be able to give you advice as well. Also, please report back if you find any good resources that you think are worth sharing!
      Jess

  2. Kathy J.

    Thanks for sharing the symposium highlights, Jess! It would be great to hear more about other posters that caught your attention. Among the topics that most interest me (I’ll use “gluten intolerance” as a catch-all phrase to encompass all shades of sensitivity, celiac, etc.):

    ~ What is the relationship between gluten intolerance and casein intolerance? From some studies I’ve encountered, the latter sometimes accompanies or mimics the former. Are the two often related, and should those with gluten sensitivity also assume that dairy should be eliminated from their diets? Studies such as the following are very interesting to me: http://www.ncbi.nlm.nih.gov/pubmed/19268534

    ~ Are consuming the products (meat & dairy) derived from grain-fed livestock a threat to those with gluten intolerance? I haven’t seen any published research on this topic, and so far, have only encountered discussions on the anecdotal level, such as: http://www.thesavvyceliac.com/2011/01/21/can-a-gluten-free-person-eat-grain-fed-meat/

    ~ How common is sensitivity to corn gluten, among those with gluten sensitivity? http://celiacdisease.about.com/b/2013/04/16/study-finds-some-evidence-for-corn-cross-reactivity-in-celiac-disease.htm

    ~ I’m always intrigued to hear about the wide range of neurological symptoms associated with gluten sensitivity. I have experienced stroke-like symptoms myself after eliminating and then reintroducing gluten to my diet, and am still trying to work out the causes of remaining health issues, now that I am permanently gluten-free.

    ~ How treatable/reversible is neurological damage caused by gluten intolerance/leaky gut/etc.? Any studies following people diagnosed with gut damage that is later repaired is of great interest to me. I’m eager to see how the in-progress clinical trials of Dr. Terry Wahls pan out: http://www.terrywahls.com/

    ~ Any formal studies linking gut floral compositions/deficits to gluten intolerance would be very interesting. http://www.ncbi.nlm.nih.gov/pubmed/22570928 ; http://www.ncbi.nlm.nih.gov/pubmed/16393236 Developments in this area hold the promise of treatments!

    Keep up the great work! :)

    Kathy

    1. Jess Post author

      Hi Kathy,
      Thanks for much for taking the time to post your questions and thoughts.
      I’ll do my best to answer based on what I can recall (I did attend every lecture but we are still waiting to obtain access to the actual PP slides, so everything I have comes from memory and my chicken-scratch notes, with the exception of the poster abstract summaries!)
      I do not recall any discussion or information about gluten intolerance being related to casein intolerance, outside of the mention that there was one study that showed that some with “wheat sensitive” IBS are also sensitive to dairy.
      During the session in which they debunked celiac “myths”the experts explicitly stated that it is safe for Celiac patients to eat grain fed meats, eggs from chickens that are fed grains, and dairy from grain fed cows. They also said that corn is safe for people with celiac disease and Dr. Guandalini actually seemed to have the viewpoint that there are not any foods that “cross-react” with gluten.
      During the actual lectures, there was very little that actually addressed the neurologic symptoms from gluten, outside of pilot research that some schizophrenics seem to be gluten sensitive. I have personally experienced neurologic symptoms from gluten (peripheral neuropathy) and I have experienced a slow resolution, but it comes back every time I am glutened. They did mention that the TTG antibodies that attack the nervous system are type 6 and right now they are used for research purposes only. Apparently only type 2 TTG antibodies are evaluated on commercially available celiac panels, at least in the U.S. I came across Dr. Wahls’ story and research last fall when I was in the midst of being evaluated for multiple sclerosis and I am also intrigued and eager to see how her research progresses!
      The probiotic/microbiome/gut flora research seems to really be in its infancy in regards to Celiac disease. There was only one lecture by Dr. Rubio-Tapia in which he discussed the scant literature and the 1st pilot study from last winter in which patients with celiac disease were given probiotics v. placebo (had no effect on leaky gut symptoms, but did improve some GI symptoms and led to a lower TTG antibody load). This is a topic that I am going to be following very closely. Are you taking a probiotic?
      Also, just as an aside, you mentioned that you have some remaining health issues….I have no idea what they are, and I’m not asking you to announce them on here, but I was just diagnosed with mast cell activation syndrome this past summer and it really helped to explain some of my residual symptoms (IBS, multiple food intolerances, brain fog, palpitations, etc) that did not disappear when I went GF. Unlike mastocytosis, many with mast cell activation do not have rashes or overt skin symptoms (I did not). I’ll be writing about my experiences with MCAS on here soon, but I am bringing it up because almost everyone else I have encounter ed with it has either celiac disease or non celiac gluten sensitivity, and our mast cells have all started to act up after adopting the GF diet.
      Hope we can keep the conversation going!
      Jess

  3. Kim

    Recently, my vision deteriorated over a matter of days. After losing nearly all my vision in one eye, an MRI confirmed optic neuritis and one day later, on the basis of the MRI, showing white matter on my brain, optic nerve and spinal cord, I was diagnosed with MS. However, as I try to process this, I cannot help but thinking, “But what of the other things I have been experiencing since I was a kid, that no one has really dealt with?” To be honest, I am just tired of feeling sick, lacking the energy to make it through the day, and being told to really just deal with it. My weight has fluctuated drastically for a long time and the doc last told me, “You just need to get a new scale.” I resonated with your story. Starting at age 3 or 4, I remember, being curled on in a ball on the bathroom floor after dinner in pain. I was diagnosed with IBS later on, have struggled for years with joint pain, insomnia, depression and many, many other things. As of today, I possess 41 of the symptoms listed on the Celiac Symptoms chart, and many more that are on University of Chicago’s Comprehensive Symptoms list. I think this something to look into. You mentioned reports of brain abnormalities with Celiac when reviewing a study. Any thoughts for me? Just FYI, I had an MRI and spinal tap 8 years ago that showed no evidence of MS–I was experiencing horrible headaches and dizziness. Questions I should ask my neurologist? To be clear, I am not saying I don’t have MS, I am just trying to figure out what questions to ask and how best to advocate for myself. I went to my primary earlier this week to discuss having further blood work done, and the response was, “I will not order further blood work. There is no reason. Now, we can just say all that you have been experiencing was the MS.” Really? So the insomnia and stomach pain that started at 3 or 4 was the MS? Thanks for anything you offer. I appreciate your vulnerability. One last thing, my dad and sister have both been diagnosed with gluten allergies in the last couple of years. Anyway, thanks in advance for your empathy.

    1. Jess Post author

      Hi Kim,
      My heart goes out to you as I read you story and learned about what you’ve been experiencing for so long. I am also sorry about your new diagnosis of M.S. Have you been tested for Celiac Disease by blood tests and biopsy? With your ongoing IBS symptoms, autoimmune diagnosis, and family history of gluten intolerance, it really, really sounds like you need to be tested for Celiac Disease if you haven’t already. The best time to do this is before going GF, because if you are GF when you get tested, the tests for Celiac can be falsely negative. I agree with you that MS diagnosed in mid life would not have caused you to have gastrointestinal issues!! Now that I have 4 kids of my own, I can fully appreciate that spending hours doubled over in abdominal pain is not normal. Can you get a new doctor? I personally just switched primary care physicians as I realized that my previous doctor, although nice, was not a good fit for me!
      I went through an evaluation for MS last fall. Prior to that I did not know much about it, as I am a neonatologist, therefore I do not see MS in my patient population. I also scoured all of the literature for research linking MS and celiac disease. I was able to find several studies that showed that untreated celiac disease can lead to brain and spinal cord lesions that can mimic MS on MRI, but I was unable to find any case reports of untreated celiac disease leading to optic neuritis. I will check to see if any new studies have been published on pubmed.gov and will let you know if I come across anything. Those of us with celiac disease, unfortunately, often develop other autoimmune disorders. In my case I have Hashimoto’s Disease and mast cell activation syndrome as well. I have met others who have both celiac and MS.
      I am unable to give you any medical advice on here (which I am pretty sure you already know), but as a friend, when I was confronted with the possibility of MS, I was all set to start on the Wahls diet-based protocol for treatment. If you look in some of the previous comments on this thread, Kathy J has posted a link to Dr. Wahl’s web page above.
      I hope this helps and that you are able to get some answers (and possibly a new doctor!)
      All the best to you. I am glad that you wrote.
      Jess

      1. Kim

        Thank you for your response. I am working to get in with a new primary, who I think will be a better fit. Thank you for the words on Dr. Wahl’s also. I am going to press to get tested for Celiac when I visit my new primary this week or next.

        Your website is very helpful. Amazing how much our sharing stories and knowledge can positively impact the life of others…your words have both encouraged and normalized. It is nice to feel like someone else gets it. Thanks!

Comments are closed.