International Celiac Disease Symposium 2013: Recap Day 1

International Celiac Disease Symposium September 23-25, 2013

International Celiac Disease Symposium September 23-25, 2013

International Celiac Disease Symposium 2013: Recap Day 1

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. – See more at: http://www.icds2013.org/#sthash.h38JWynZ.dpuf

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!

Rebecca

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Comments

  1. Thank you so much for sharing this information. Currently my GI specialist thinks I have gluten intolerance and staying off gluten has proven to be very effective in eliminating my symptoms and most ailments.

    He, the specialist, has ordered the HLA gene testing and has referred me to see a Registered Dietician to ensure I’m getting the proper nutrients on this new diet.

    This blog has been wonderful to read and comforting as this has been a life changing summer for me. My sensitivity came after having a very bad stomach flu and things have not been the same for me ever since. I also eliminated potatoes and rice from my diet. Any cross contamination of either/or and I’m so sick I am end up in emergency to be rehydrated through IVs. Because cross contamination causes extreme nausea and vomiting, the specialist gave me a prescription for Zofran, which has really helped me when I have accidentally ingested something that makes me ill.

    I’m looking forward to reading more about your conference experience.

  2. Wow, thank you for this great information, and looking forward to more! You are right about all of the conflicting information on the Internet, and my HMO doesn’t seem to know a lot about celiac either, so what you’re passing on is especially valuable to me. Did they say how soon after beginning a GF diet that blood should get retested? I’m also wondering what they think about food made on shared equipment. I won’t eat anything that is, you hear that the machinery is cleaned, but gluten is so tiny. I am also leery of dried beans because they are often cleaned or processed on shared equipment, but at least you can really rinse them prior to cooking. I’ve never found canned beans that aren’t made on shared equipment. And lentils are often grown in rotation with wheat so I haven’t eaten any since diagnosis. I’m a vegan, so legumes are a big deal for me. If a bakery has GF offerings, among products with gluten, I don’t trust that. Well, you can see I have a few million questions about cross-contamination. :-). Again, thank you,

  3. Kelly Baron says:

    Hmmm….all sounds good except for the part about non celiac gluten sensitivity. I say that only because they do have a way to diagnose it, just not a clinical test. Dr. Fassano uses a trial elimination after testing for Celiac comes back negative — they do know what a lot of the symptoms. I’m just a little worried that he was trying to say it didn’t exist because there are number of “Celiac” docs out there who still dismiss it as a problem. :( Did you get that sense?

    Also — mine also started after a bad stomach illness. According to Dr. Fassano it is a known trigger, but they can’t pinpoint the illness or illnesses.

  4. Thanks for posting, Rebecca. I was hoping to be there so I will live vicariously through you! I hope whoever spoke about the Internet didn’t poke fun at it as I’ve heard one of the doctors (who is at this conference) has done before. While I think it is wise to question any info we receive about celiac disease and gluten sensitivity (including that from our MD), I appreciate the benefits the Internet has provided me. The fact is that we just don’t know enough about both of these disorders at the moment, . I learned through my journey that I know more than my MD about both CD and NCGS (thanks to the Internet…maybe she should do a little surfing). I am forever grateful for modern technology especially the Internet. If it wasn’t for the World Wide Web, my son would not be healed of autism. I would have not had the means to do the research to figure out was burdening his body. I was able to collect information, connect with parents across the US and figure out how to heal my son and I did it single handedly with NO HELP from western medicine…just parents uniting to heal our children.

    Keep the info coming!

Trackbacks

  1. […] No. Absolutely Not. Diagnosis requires much more than a blood test. See my earlier blog post on the 4 of 5 tests needing completed to confirm a diagnosis. If someone diagnoses you based on a […]

  2. […] status and primarily it’s been because I feel in limbo. You might remember that I attended the International Celiac Disease Symposium in September hosted by the University of Chicago Celiac Disease Center. During some of the […]

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