International Celiac Disease Symposium 2013: Recap Day 1

International Celiac Disease Symposium September 23-25, 2013
International Celiac Disease Symposium September 23-25, 2013

Wow. Just wow. That is all I can say right now after my first day at the ICDS 2013.

I am forever grateful and thrilled I was able to attend this monumental event in Chicago. The information I learned already is so incredibly valuable and helps wade through much of the misinformation you find on the internet or hear through the grapevine.

The biggest thing I’ve learned so far is not to trust information found on the internet, even studies! They are filled with inaccuracies, small sample sizes or inconclusive information that can spread like wildfire. There are world-renowned celiac experts at this conference, sharing their findings, beliefs and information about celiac disease.

If you aren’t sure what the heck I’m talking about yet, the International Celiac Disease Symposium is a 3 day event held every 2 years in cities all over the world. Here is what the conference is all about directly from the ICDS2013 website,

“While the 15th ICDS meeting will continue to build upon the successes of 40 years of past ICDS scientific programs, the Chicago meeting is designed to address the interests of all of those affected by celiac disease and gluten-related disorders – from physicians and researchers to patients and clinicians to family and friends. The ICDS Chicago will present two distinct interactive educational tracks. The meeting will bring together the world’s top scientists and physicians to discuss the most recent scientific advances in managing and treating celiac disease and gluten-related disorders while a separate clinical forum will be held to further educate dietitians, clinicians, and patients.“

It’s impossible for me to share all the information I learned today into one blog post so I am going provide some information based on the major points of the discussions. If you head over to Twitter and do a #ICDS2013 search, there are hundreds, if not thousands, of tweets from the event that will blow your mind!

Here are some great things I learned today:

  1. We are not born with celiac disease. Genes, yes but the actual disease can develop at any age or stage of life.
  2. Women are diagnosed 2-3 times more frequently than men.
  3. When a biopsy is done, advocate and ask for 4-6 biopsy samples to be taken during the procedure. 2 is simply not enough.
  4. There is a major lack of follow-up with doctors and celiac patients – patients must advocate for their health and not only see their doctor for follow-up appointments, but work with a registered dietitian to ensure proper nutrition is being received by the celiac patient. There are inadequate follow-up visits, no assessment of compliance with diet, no follow-up biopsies are being done and inadequate f/u serology testing.
  5. Gluten alters bowel function in patients with irritable bowel syndrome if they are positive for the HLA-DQ2 or HLA-DQ8 gene but do not have celiac disease.
  6. Just because you have the HLA-DQ2 or HLA-DQ8 genes, it does not mean you have celiac disease.
  7. Celiac disease is seriously under diagnosed in men.
  8. There is not enough information to diagnose non celiac gluten sensitivity and no reliable information is available to determine how many people may be affected by this because screening is unknown as well.
  9. Small Intestinal Bacterial Overgrowth may be a problem in people who have similar symptoms as IBS or Celiac but aren’t diagnosed. There isn’t a lot of research on this but a hydrogen test is available. (Actually, this test is something I have at my house to take next week when I get back from the conference)
  10. A gluten-free diet should never be started prior to ruling out or being diagnosed with celiac disease.
  11. Doctors are still recommending a gluten challenge for people who have been gluten-free on their own merit or for other reasons and then need to be tested for celiac disease.
  12. If you have a first degree relative diagnosed with celiac disease, you should be tested.
  13. Support groups for children and adolescents are the best way to help them cope with their diagnosis. If you can’t find one, create one yourself. Sometimes we need to take these matters into our own hands in order to help the kids.
  14. Osteoporosis normalizes within 3 years of following a gluten-free diet of people with celiac disease.
  15. Failure to adhere to a gluten-free diet will cause continued bone density loss and contribute to osteoporosis.

The 4 out of 5 Signs Rule for having celiac disease – you should have 4 of 5 of these done in order to diagnosed celiac disease:

  1. Presence of signs and/or symptoms compatible with celiac disease
  2. Positive serology testing (TTG +/- EMA)
  3. Compatible HLA genes (DQ2 e/0 DQ8 positive)
  4. Positive internal biopsy with enteropathy (damage) typical of celiac disease
  5. Resolution of symptoms with a strict compliance with a gluten free diet

In total, my mind was filled with information and excitement to not only learn about celiac disease, but also to have safe foods to snack on and enjoy for 3 full days. Stay tuned for more information from tomorrow and Wednesday!

 

Gluten Free Review: Maggiano’s Little Italy (awesome)

maggianos
Today I found a hidden gem of the gluten free foodie world. My best friend and blogger – Sara Wyen of Words To Run By went with me to the Celiac Awareness Tour in Cincinnati, Ohio today. We were excited to see all the fun, new gluten free goodies with all the vendors. Another blog post coming soon on that…

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While we were there, Maggiano’s Little Italy chef Karl Lenz was there speaking and doing a gluten free demo. Well, I knew exactly where the Maggiano’s Kenwood was located and we zipped on over there for lunch. I am so glad we did.

Upon entering the restaurant, I asked for the gluten free menu. They explained rather than having a gluten free menu, the Assistant Manager would come out and explain the gluten free options and ensure my meal was allergy safe.
Matthew Powell, the Assistant General Manager came over to the table after our waiter quickly brought us drinks and very thoroughly explained how 90% of their menu items can be made into gluten free dishes. He walked me through the menu and made sure I was clear on food preparation, ingredients and options for celiac disease.

This was the most gluten friendly and celiac aware place I’ve been to yet.

90% of their menu items could be made gluten free – surely it wasn’t so. This place isn’t on any of the safe lists or gluten free places to eat. Oh boy, did they knock my socks off.

I decided to try their corn pasta.

It. Was. Amazing.

Gluten Free Corn Poasta Maggiano's
Gluten Free Corn Poasta Maggiano’s

Sara and I ended up sharing a meal because it was really big. You know what the best part was? They have several menu items that you can get a to go item FREE if you order from the list. Yup – I got 2 meals for the price of one. 1 being a gluten free specialty menu item – without paying extra. Our entire lunch with the meal, Cesar salad for Sara and 2 iced teas was $24.

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Can you tell we didn’t like it? Just kidding.

Matthew even came out after the meal and ensured everything was ok and up to my gluten free liking! Of course I explained.
The chef that was doing the demo at the Celiac Awareness Tour, Karl Lenz – was back before we finished lunch and he even came out to welcome us and explain their cooking methods and showed me their pastas!

Maggiano's Corn Pasta
Maggiano’s Corn Pasta

I felt completely safe eating here, had no stomach ailments after my meal and will certainly make this a go to spot when we are in Cincinnati. The manager, chef and waiter all made me feel comfortable and took care of me the way a restaurant should with people suffering from food allergies. We already have a big enough burden of having this food allergy, we shouldn’t have to feel like one while eating out.

Rebecca

Maggiano’s Little Italy Cincinnati

Kenwood Mall

7875 Montgomery Rd.
Cincinnati, OH 45236

513.794.0670