Celiac experts always made time for questions

Celiac experts always made time for questions

Well it was a jam-packed event FILLED with celiac disease research at the International Celiac Disease Symposium in Chicago. Each day filled with a great breakfast, snacks and lunch, and even more fantastic information. The speakers and experts were there not only presenting their research, but answering people’s questions after each session (see photo right).

I have a few thoughts on the biggest points to take away from this conference are as well as what some of the attendees thought.

Celiac Myths

Some gals from Omaha were sitting next to me in Wednesday’s session, including Kathleen Couchonnal and her partner in crime @GFOmaha (so sorry I didn’t get your name!) — they help run the Celiac Sprue Association Support Group Chapter in Omaha, NE.  The hot topics they mentioned were the celiac myths that were debunked on Tuesday.


This group from Omaha was also interested about the Low FODMAP diet which involved non-celiac gluten sensitivity and Irritable Bowel Syndrome.  The discussion by experts asked whether gluten may or may not be the culprit for those folks. FODMAP means:







To explain, low FODMAP does not equal gluten free, and gluten free does not equal low FODMAP.    If you are already gluten free, you already have a good start, but the FODMAP diet will be even more restrictive for you.  For example, on a gluten-free diet you can eat any fruits and vegetables.  On a Low FODMAP diet, you can’t have foods like apples, asparagus, and watermelon.  Low FODMAP eaters can’t have wheat, but they can have other gluten-containing grains (if they aren’t already on a gluten-free diet). Researchers wondered if going on the Low FODMAP diet may help the GI issues that can come with these foods.  (As always, consult your doctor and nutritionist before going on a diet like this)

Slow Gut Healing

The Omaha group (along with possibly everyone else in the audience) was surprised to hear a consistent theme from researchers: that while blood tests may improve on the gluten-free diet, the villous atrophy may still not get better or it may take longer to heal than others.  Dr. Alberto Rubio-Tapia from the Mayo Clinic reported that after 2 years on a gluten free diet, 34% of patients had gut healing.  After five years that number went up to 66%.  We were pretty astonished that  better serology tests did not equal better gut recovery.   Doctors recommend a follow-up biopsy to ensure healing is happening.

A patient whose gut doesn’t heal could have non-responsive celiac or refractory celiac disease.  Non-responsive celiac most often is getting some sort of gluten contamination in their diet.  A dietitian can help sort out how that is happening.  Refractory Celiac can be much more complicated than that.  These folks just don’t get better on a gluten-free diet.  There is a Type 1 and Type 2.  Type 1 can be treated with steroids.  Type 2 is very serious and can cause lymphoma.  Refractory celiac affects only 1% of non-responsive celiacs.


I talked to Bareket Roni from Chicago.  He has a 3-year-old with celiac disease.  He feels the public just doesn’t know enough about celiac and that education as a whole is very important.  He would like to see food industries get together and “tell us what is in our food…not just gluten.”

Then a participant with celiac from Canada said her takeaway was to “go get her kids tested”.  “I thought because they had no symptoms, they didn’t need to get tested,” she said.  Hearing some of the non-gut symptoms like canker sores made her think twice about her kids.

One of the biggest quotes that really hit home to me was about silent celiac.  Dr. Dan Leffler of Beth Israel Deaconess Medical Center in Boston said,

“Osteoporosis, liver disease, fertility issues are silent symptoms of celiac until they are not.”

That was a quote that might live with me forever.  So true!

Book of research abstracts from ICDS2013

Book of research abstracts from ICDS2013

Another point researchers drove home was that those over-the-counter glutenase enzymes that say they can help you if you get “glutened” — really don’t work.  This information was put in the celiac myths story already published.

Believe me there were SO many other points and subjects discussed at ICDS2013.  I have a book of more than 250 research abstracts to sift through.  I will try to tackle many of the topics, research and issues here in the coming weeks (or even months perhaps)….given all the information we have received.

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3 Responses to “Top ‘Takeaways’ on Celiac Disease at #ICDS2013”

  1. Thank You for Sharing.

  2. Wow, what a treasure trove of valuable information, between the experts, literature AND attendees. I can’t wait to learn more as you set yourself to the task of digesting and sharing it all. Keep up the great work, Amy!

  3. Thanks Belinda!

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