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 Pizza Delivery? Just Call Donatos!

Donatos Gluten Free Pizza
Donatos Gluten Free Pizza

Gluten Free Pizza Delivery? Just Call Donatos!

Just a few weeks ago, I sat in my office with Laura and told her one of the things I miss the most about living gluten-free is the ease of just being able to order a pizza. For once, like the old days, I want to call a pizza place and have them deliver a safe, gluten-free pizza. It seems just a few days after this conversation, Donatos Pizza emailed us to work with them on launching their new gluten-free pizza with Udi’s gluten-free pizza crust.

I went to a meeting at their facility here in Columbus and actually was able to meet the chef that helped create this line for them. Her son and husband have a gluten sensitivity and their family is gluten-free. She presented the idea to Donatos and they decided to run with it. Now, here is the best part…

The take and bake frozen pizza’s are on Udi’s gluten-free crust and created in a dedicated gluten-free facility. However, Donatos offers two different ways to get their gluten-free pizzas.

If you go to the store or order one for delivery, you can get one made and cooked for you in the store. However, this option is typically only good for people with a sensitivity because there is a high risk of cross contamination. I mean it is a pizza place! They can’t be sure 100% of all surface areas are perfectly clean and sanitized so they want to make sure people are aware of that before ordering.

But, what if I told you there is a second option. A better option. An option every celiac has been waiting for….

Picture this…. Your family is over for a party and everyone wants pizza. You decide to call Donatos and place an order. While you are on the phone with them, you walk over to your oven and preheat it to 425 degrees. Then you order a FROZEN gluten-free pizza – free from cross contamination and cooked in a dedicated facility and when it arrives, you pop it in the oven for 11-14 minutes and are able to enjoy a pizza night with your family? You can order a cheese or pepperoni frozen pizza! Now, because of cross contamination issues, they cannot bring you extra toppings to put on your frozen pizza, but that doesn’t mean you can’t add your own at your house!

Well, the wait is over folks and this is now a reality! You can now have this pizza delivered to your house and safely enjoy it with your family!!!

Donatos Gluten Free Pepperoni Pizza
Donatos Gluten Free Pepperoni Pizza

If you are in the frozen food section of your grocery story, look for the Sonoma Flatbreads by Donatos. They have a gluten-free line also and are just as good as the Donatos gluten free take and bakes. We found them at Raisin Rack and Kroger grocery stores but they are quickly expanding, so be sure to check your frozen food section next time you are at the grocery store. You can also contact them online and see where you can find one near you!

Sonoma Flatbread
Sonoma Flatbread

Donatos gave me one of each pizza to try & I must tell you they blow the competition out of the water as far as gluten-free pizza. Especially the Donatos gluten-free take and bake. If you want something that tastes like regular pizza, then this is the one for you. Make sure you check with your local Donatos before ordering to ensure they have them in stock!

If you live around central Ohio and want to try them, Donatos is sponsoring my BlogDay Party on August 29th! Click here for more information or to RSVP!

Come to my BlogDay Party!!
Come to my BlogDay Party!!

 

Gluten in Medicine Disclosure Act – Interview Congressman Tim Ryan

gluteninmedicine
Gluten in Medicine Disclosure Act

I had the pleasure of interviewing U.S. Representative from the 13th District of Ohio, Tim Ryan,

about the Gluten in Medicine Disclosure Act.

Rep. Tim Ryan (D)
Rep. Tim Ryan (D)

I am from North East Ohio and am proud to say this is Congressman Ryan’s district! Unfortunately, he was called to vote and I only had a brief 10 minutes to talk to him about the Act. But, you can listen to our conversation right here…

According to Congressman Ryan’s website,

The Gluten in Medicine Disclosure Act has been endorsed by: American Celiac Disease Alliance, National Foundation for Celiac Awareness, Celiac Disease Foundation, Celiac Sprue Association, Gluten Intolerance Group, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and the American College of Gastroenterology.

So,  what can you do to help?

You can call or write to your local representative and tell them you support this Act! Most of our congressmen have email addresses that you can contact them. This bill was reintroduced this year, after failing last year despite thousands of letters of support to congress. Our letters got this Act reintroduced and it’s up to you to keep the momentum by reaching out and contacting your congressmen!

Click Here to find out who your congressman or woman is to contact regarding the Gluten in Medicine Disclosure Act!

Click Here if you need help with how to write a letter to congress!

Click Here if you want to contact Congressman Tim Ryan!

If you would like a good guide about the medications, http://www.glutenfreedrugs.com/ is a great resource and website for information on gluten in medications.

Do you have a story about gluten in medications?

Do you have tips for other people that struggle with gluten in medicine at the pharmacy or getting answers?

I wanna her about it – post in the comment section below :)

 

 

Celiac Awareness and The Buckeye Journal

The Buckeye Journal Cover
The Buckeye Journal Cover

I can honestly say this is the best week of my life.

I’ve dedicated the last 8 months to Pretty Little Celiac and Bexa Body Fitness and all of those accomplishments were showcased this week. First with the Columbus Business First Forty under 40 award and now with the COVER of The Buckeye Journal.

Is this real life?

IMG_1094

This magazine circulates to thousands of central Ohio residents who will read about celiac disease and hopefully this will bring awareness and education to all that take the time to read it! My vision for the article is that everyone who picks up a copy will understand the struggles we go through and maybe even could help someone get diagnosed. There are people I will reach and I won’t even know it but that’s okay because I know in my heart I helped. If you’ve been reading my blog for a while, or maybe you just stopped by today – you should know I’m a type-A, overachiever who loves helping other people. It makes my day when I get emails, messages, comments and more letting me know how much our stories are alike or that I helped you through a difficult time. You have no idea how much it personally affects me!

IMG_1025

I have the most amazing things planned  for Pretty Little Celiac until the end of 2013. I know we are ending celiac awareness month but it’s my goal to make every month dedicated to celiac awareness. My projects are going to help so many people, that I just can’t wait to get them done and share them with the world. I hope you can sense my excitement for this blog because I think I might jump out of my chair.

Thanks for reading – Stay tuned for what’s to come!

IMG_1074

 

I’m a WeGo Health Activist Finalist for Rookie of the Year Award 2012!!!

I’m a finalist for the Rookie of the Year Award!
I’m a finalist for the Rookie of the Year Award!

I am SO excited that I’m just smiling ear to ear today after hearing I am a finalist for the Rookie of the Year award by the WeGo Health website! Click on the link to see the other finalists and share or comment on the post!

What does the WeGo Health program do?

WEGO Health is a different kind of social network, built from the ground up for the community leaders, bloggers and tweeters who are actively involved in health online. WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities. And it’s free.

Our goal is to equip our network with opportunities designed for the active contributor, relevant content, powerful educational resources and shareable interactive media. We hope that the bloggers, tweeters, and community leaders that we call Health Activists will find inspiration, strength and support here.

All I can say is THANK YOU to my followers and the gluten free and celiac community for opening your arms to me and bringing me into your world.

 

xo

Rebecca