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Recap of Non Celiac Gluten Sensitivity ICDS Pre-Conference 9.22.2013

I was fortunate to be able to attend the International Celiac Disease Symposium (ICDS) in Chicago last week, during which I was able to hear lectures given by world expert doctors, researchers, and nutritionists.  Although I got home 3 days ago, my mind is still spinning from all of the information that I learned and tried to absorb during the 22 hours of lectures.  I was also fortunate to meet some awesome people from the Celiac internet community, including Erica from Celiac and the Beast, Rebecca from Pretty Little Celiac, G-Free Laura, and The Gluten-Free Professor. Although I was not one of the official bloggers from the conference, I did learn some information that I’d like to share with you.

Over the next few weeks I plan to summarize much of the information that I learned about both Celiac Disease and Non Celiac Gluten Sensitivity (NCGS) at the symposium, as well as to try to convince you to attend the next ICDS in Prague in 2015 with me, as my dear husband has already declined.

On Sunday night there was a pre-conference on NCGS with a panel of speakers who are world’s experts on NCGS.  I am very interested in this topic as I have several family members who have NCGS and I am amazed by the lack of awareness of this condition in the medical community. There are many doctors who believe that you cannot get sick from gluten unless you have Celiac Disease (intestinal damage) and as you may already know, this is not true!

The experts who presented information about NCGS included Drs. Fasano, Green, Kelly, Mooney, Volta, Schuppan, and Leffler. Below is a summary of some of the information that was shared with the audience:

Patients with NCGS experience adverse symptoms after ingesting gluten but they do not meet the criteria for getting diagnosed with Celiac Disease (namely, they do not have the findings of Celiac Disease on small bowel biopsy).  NCGS is a “diagnosis of exclusion” meaning that, ideally, Celiac Disease is ruled out before a diagnosis of NCGS is given. Despite this, many with NCGS are self-diagnosed.

Between 0.5 to 6% of U.S. population has NCGS, depending on which study is referenced.  The average age of diagnosis is around 40 years, but the research on NCGS is really still in its infancy. Some patients with NCGS have abnormally high antibodies that are associated with Celiac Disease, such as TTG IgA and/or anti-gliadin antibodies, and others do not. About half of patients with NCGS have one of the two main Celiac genes (HLA-DQ2 and/or DQ8) and half do not.  There are currently no biomarkers for NCGS, which plays a large part in the difficulty of diagnosis.

In a large Italian survey, the most common symptoms associated with NCGS included abdominal pain, bloating, diarrhea, fatigue, headache, anxiety, and a “foggy mind.” This mirrors the symptoms that have been described in previous studies.

Dr. Green introduced the acronym PWAWG which stands for People Who Avoid Wheat and Gluten.  According to Dr. Green, not all PWAWGs have NCGS, and many have other problems such as small intestinal bacterial overgrowth (SIBO) and fructose intolerance.  In one recent study, which has gotten a lot of attention, many NCGS patients’ reactions to gluten totally disappear when FODMAPs are also removed from the diet (see link to paper in references below).  However, the researchers only looked for a resolution of abdominal and digestive symptoms and we do not know if other symptoms of NCGS, such as headaches and anxiety, also improved when FODMAPs were removed.  More research is needed in this area. Although I will discuss FODMAPs more in the upcoming weeks, you can refer to Stanford’s website for more information on the low FODMAP diet if interested.

I learned that both autism and schizophrenia have been associated with anti-gliadin antibodies. There was a publication in 2011 that showed that there is subset of autistic children whose symptoms improve on a gluten free and casein free diet.  There are also ongoing clinical trials to see if the GF diet can help improve symptoms associated with schizophrenia.  The tissue transglutaminase antibody (TTG) type 6 looks to be a marker of neuroinflammation and is a possible biomarker for schizophrenia. TTG type 2 antibodies are what are currently measured in blood tests for Celiac Disease.

The pathogenesis of NCGS appears to involve the innate immune system and it is possible that wheat amylase trypsin inhibitors (ATIs), a totally different portion of wheat than the gluten proteins, may be involved. I wrote about this a bit last winter (see link) and the article referenced can be found in the references below.

During the panel discussion, we were reminded that the only way that a NCGS individual who is already GF can find out if he or she has Celiac Disease is to undergo a “gluten challenge.”

One of the last questions to the panel was, “Who should be avoiding gluten?” The answer given was patients with Celiac Disease, NCGS, and possibly autism and schizophrenia.

I also learned that Dr. Fasano recently published a book called “A Clinical Guide to Gluten-Related Disorders,” which I plan to purchase a copy of ASAP. It is available on Amazon.com (see here).


Dr. Fasano reminded us that there is currently more confusion than understanding of NCGS, and that it is similar where we were with understanding Celiac Disease 20 to 30 years ago. The great thing is NCGS is finally being recognized and properly studied!

For a great overview of NCGS, please check out the following abstract from PubMed by Dr. Volta, who was one of the experts on NCGS at the symposium:

Volta U, Caio G, Tovoli F, De Giorgio R.Cell Mol Immunol. Non-celiac gluten sensitivity: questions still to be answered despite increasing awareness.  2013 Sep;10(5):383-92. doi: 10.1038/cmi.2013.28. Epub 2013 Aug 10.

Recently, the increasing number of patients worldwide who are sensitive to dietary gluten without evidence of celiac disease or wheat allergy has contributed to the identification of a new gluten-related syndrome defined as non-celiac gluten sensitivity. Our knowledge regarding this syndrome is still lacking, and many aspects of this syndrome remain unknown. Its pathogenesis is heterogeneous, with a recognized pivotal role for innate immunity; many other factors also contribute, including low-grade intestinal inflammation, increased intestinal barrier function and changes in the intestinal microbiota. Gluten and other wheat proteins, such as amylase trypsin inhibitors, are the primary triggers of this syndrome, but it has also been hypothesized that a diet rich in fermentable monosaccharides and polyols may elicit its functional gastrointestinal symptoms. The epidemiology of this condition is far from established; its prevalence in the general population is highly variable, ranging from 0.63% to 6%. From a clinical point of view, non-celiac gluten sensitivity is characterized by a wide array of gastrointestinal and extraintestinal symptoms that occur shortly after the ingestion of gluten and improve or disappear when gluten is withdrawn from the diet. These symptoms recur when gluten is reintroduced. Because diagnostic biomarkers have not yet been identified, a double-blind placebo-controlled gluten challenge is currently the diagnostic method with the highest accuracy. Future research is needed to generate more knowledge regarding non-celiac gluten sensitivity, a condition that has global acceptance but has only a few certainties and many unresolved issues.

Additional References from ICDS pre-conference:

1. DiGiacomo, et al. Prevalence of gluten-free diet adherence among individuals without celiac disease in the USA: results from the Continuous National Health and Nutrition Examination Survey 2009-2010. Scand Journal Gastroenterol. 2013 Aug;48(8):921-5. doi: 10.3109/00365521.2013.809598. Epub 2013 Jul 8.

2. Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, et al. Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol 2011;106:508–14.

3. Biesiekierski JR., et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology. 2013 Aug;145(2):320-8.e1-3. doi: 10.1053/j.gastro.2013.04.051. Epub 2013 May 4.

4. Junker, et al. Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor 4. J Exp Med. 2012 Dec 17;209(13):2395-408. doi: 10.1084/jem.20102660. Epub 2012 Dec 3.



15 thoughts on “Recap of Non Celiac Gluten Sensitivity ICDS Pre-Conference 9.22.2013

  1. Marilyn Russell


  2. Jess Post author

    Hi Marilyn,
    Thank you so much! It really means a lot to know that I my page has been helpful…this is the biggest reason why I started it late last year. I am continually learning more about celiac disease and other problems associated with gluten everyday and I love being able to share the info. that I come across.
    If you have just been diagnosed and are newly GF, I hope that you begin to feel well soon. It can take some time to get used to the GF lifestyle, but once you start to feel better, it is becomes easier and easier to maintain it. Although I still have bad days once in a while, I overall feel like a new person compared to who I was prior to being diagnosed.
    Please feel free to ask questions at any time and welcome aboard!
    P.S. Your message came at the perfect time because just prior to reading it I had received a disgruntled email from someone who dislikes my page. You can’t please everyone, right?

    1. Vik

      Jess, thank you for recap! I was bragging about you at my celiac support group meeting today. They were asking if anyone had been to the celiac conference sessions. One person attended conference but not able to see many sessions b/c she was working. I told them how I read your twitter feeds during, and that you were going to publish posts about the conference, and that you were a doctor (and they all went oooooo ahhhhh). I offered, that once you and a couple of the other bloggers started posting, that I would email your blog addresses to a coordinator who would email it to the group! And they said, yay!

      1. Jess Post author

        Hi Vik,
        That is so awesome of you to share my page. Thank you! I am trying to figure out how to manage my time to be able to write up more of the conference while it is still fresh in my mind.
        Is your Celiac support group helpful? The first group that I joined was not, but I found a group that is about a 30 to 40 minute drive from me, and they are absolutely phenomenal (now I understand why people recommend that we should all be in a support group of some sort!)
        It has been really nice to get to know you on here! Hope you’re having a good week!

  3. Cherish

    Hi, Jess.

    This was a really interesting post, but I just wanted to mention that a lot of the research on autism and the gluten-free/casein-free diets has not panned out. (http://www.edb.utexas.edu/education/assets/files/ltc/gfcf_review.pdf) That being said, if I were a parent, I’d still want to give it a try. My older son is mostly GF simply because we are in the house…but we recently tried removing milk from his diet, and boy did his ADHD get better. And I just have this feeling that grains really aren’t the best diet for us, anyway. :-)

    1. Jess Post author

      Hi Cherish,
      The expert panel definitely stressed that it the GF diet does not seem to work for all with autism, but that it seems like a worthwhile thing for parents to try. The research that they presented on the GF and improvement of schizophrenic symptoms was pretty remarkable though. Some of the pilot data should be published soon, but there was an improvement in less than 2 weeks in most cases.
      So interesting about the ADHD. I know a pharmacist whose 2 sons’ ADHD totally resolved when she took gluten and processed foods out of her home. They went off of all ADHD medications within just a few months. There is still so much to learn!
      P.S. Still have the ketogenic diet on my reading list!

      1. Cherish

        Thanks for the clarification. I have a couple friends whose kids are autistic, so I’m never sure if I should pass on this information or not. The kids already have a lot of food allergies, so it seems like the obvious thing would be to remove processed foods. However, that’s a lot harder for some people to do than it was for me. (And I struggle with that with my own kids.)

        BTW, the milk idea came after our email discussion. I found a lot of interesting stuff out and I’m still a bit on the fence about goat’s milk (different casein than the one in cow’s milk and it’s supposed to be less harmful). Of course, we’ve been using almond milk, and all the ‘paleo’ people say to stay away from nuts. I’m getting the feeling there’s no way to win this one. Anyway, glad you mentioned the milk because he’s much happier and we’re now trying a trial of reduced meds to see how he handles it. Anyway, I came across this interesting post on how food sensitivities, especially gluten and milk, can cause problems with ADHD: http://diagnosisdiet.com/food-sensitivities-and-adhd/

        1. Jess Post author

          Hi Cherish,
          Thanks for the link to the Diagnosis Diet blog. I was not familiar with it and I like the way that she writes and explains everything. I will definitely recommend it to others.

  4. Sharon

    Hi Jess,

    Still owe you that PhD’s name from the Celiac Sprue Assn regarding the seaweed/carrageenan AA sequencing from an Email off my old barely bootable machine (on my list!). Take your time on the postings from the conference, I am just getting caught up (hah!) as I spend much of my time helping folks with the GF diet and adding to my own “white paper” on this evolving disorder. Of course if you wait too long, something will surely change with CD or GS (will have to be better about using NCGS)!

    Great info, though I am shocked that joint pain did not make the NCGS list of most common symptoms….The FODMAPs are something I started reading about this summer and learning more about at a local celiac conference.

    In searching on CRP (C-Reactive Protein for those who do not know) & celiac disease came upon this very interesting case study from 2007: A Case of Sequential Development of Celiac Disease and Ulcerative Colitis http://www.medscape.com/viewarticle/560764_2 . It forces you to sign up for Medscape – even if you paste it into your browser but just Google “CRP and celiac disease” and you will be able to get at it w/o signing on. There are abstracts of it out there and the medical search sites should allow you to get at it.
    The astounding thing to me was the workup for this woman was right on (and they know celiac in Ireland) yet she was negative by antibody testing and her villi were normal. She was diagnosed 5 years later with CD, then about a year after that the comorbid colitis. CD is sneaky, stealth, and even the best diagnosticians can miss it with the current technology – and genetic testing is too expensive to keep patients in a constant rule-in/rule-out loop.

    It is also still astonishing the number of apparent NCGS folks who do not have the genes – though present, except for the autoimmune issues, like those with CD-though again what about the CD and NCGS shared issue with arthritic symptoms?

    Was there any discussion about that third gene HLA-DRB1, as the GI doctor was amazed my husband (quite symptomatic and Irish with a family full of weird autoimmune and immune issues and cancers) did not have the HLA genes and tested negative for CD.

    One other interesting note from my recent research….I had a long history of Tygeson’s Superficial Punctate Keratitis – severe for many years now long in low level of remission. It completely cleared after 30 years with my recent CD diagnosis and GF diet (did not tell my ophthalmologist about the CD but he astonishingly reported no signs of inflammation – asking if I was on an anti-inflammatory drug). Apparently, here is a possible genetic link of TSPK to the HLA-DR3 antigen, associated with Graves’ disease, multiple sclerosis and celiac disease so possibly an immune issue for people with TSPK? Pardon by weak genetics from undergrad school, but I think there is a lot to learn about CD and what we don’t know is impacting the ability to properly diagnose it with those tricky cases – like the woman who was symptomatic but negative.

    1. Jess Post author

      Hi Sharon,
      Thanks for sharing all of your insights and thoughts. I thought of you during the conference because they discussed on online database/bank where the chemical structures of different foods are analyzed and the researchers figure out how closely related to gluten they are. It is called http://www.allergenonline.org. I searched and came up empty-handed in regards to carrageenan, or any seaweed for that matter, but perhaps I missed something.
      As for HLA-DRB1, I don’t recall it being discussed at all, even during the genetic talk. I do have a huge book of abstracts of all of the posters that were presented, so if I come across something in there regarding DRB1, I will let you know.
      Also, I have let the carrageenan thread lapse a little bit which I feel bad about. There is a woman who emailed me and would like to discuss the issue with you via email. Can I share your email with you?
      I think that we will eventually have answers to most of our questions about Celiac Disease and NCGS. It would be great if it was to happen during our lifetimes though :)

  5. Sharon

    Certainly, Jess. You can send my Email along to her.
    I booted that old machine to life long enough to gather the emails from CSA scientist re: carrageenan and seaweed in text format. (Had moved machine to another room…has to be one of the last Vista OS converted to Windows 7 with no WiFi card!!! else I would have forwarded them directly). I will send them to your website’s email address.


  6. Laura

    The study on FODMAPS and NCGS seems questionable to me, since they used whey protein as a placebo. The whey protein would contain casein, which cross-reacts with gluten. They used a commercial whey protein product, which would not be carefully purified of casein. In Carrochio’s study the majority of people with NCGS also reacted to cow’s milk confirmed by double-blind placebo-controlled food challenges.
    My delayed food allergies aren’t related to FODMAPS content.

    1. Jess Post author

      I have also tested many of the GF FODMAPs foods back when I did my elimination diet in 2012 and I did not appreciate any reactions either…which I am thankful for because beans are one of my main protein sources these days!

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