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Thursday, May 12, 2016
Would You Eat Gluten for $160?
A very interesting email popped up in my inbox yesterday that got me angrier the more I read it. The University of Chicago Celiac Disease Center is recruiting patients for a clinical trial for a pill to treat celiac disease. I've said it before but I would never want to take a pill for celiac disease. I would rather pay attention to the food I am ingesting daily. I've been doing it for almost 35 years now so adding another medication to my body is of no interest to me! On the flip side, I do know many of my readers are interested in some kind of medication to manage celiac disease and might be willing to be in a clinical trial.

But this trial rubbed me the wrong way. If enrolled in the study, you need to eat gluten bread, go in for six study visits, have blood drawn, provide stool samples, and get an endoscopy in exchange for a whopping $160. Wait, what??? 

First of all, I would miss multiple days of work if I had to eat even one quarter of a slice of regular gluten bread. Traveling to and from the trial would become impossible unless I had a toilet nearby! I would also miss a full day of work for an endoscopy. That is approximately 3-4 days of missed work and is worth way more to me than $160.

Second of all, I don't believe there is not enough evidence about the long-term damage of eating even a little bit of gluten on someone with celiac disease. Have the trial coordinators considered this in their preparation?

Lastly, I would like to understand UPFRONT the way Montelukast will treat celiac disease and how symptoms will be monitored. According to the Mayo Clinic website, Montelukast has side effects that include: "abdominal or stomach pain, flu-like symptoms, general feeling of discomfort or illness, headache, joint pain, shortness of breath or troubled breathing, and unusual tiredness or weakness."
Sorry University of Chicago, but you won't get a clinical trial study out of me. I don't know about you, but I have at least two or three of these symptoms (if not all) every time I ingest gluten. NO THANK YOU.

What do you think about this trial? Do you think you would participate? If not, why? I would love your comments below!



A Pill to Treat Celiac Disease?
Now enrolling patients to a clinical study! 

WHO: you may be eligible for this study if:

  • You are age 18 and older
  • You have celiac disease
  • You have been on a gluten-free diet for at least one year
  • You are willing to eat gluten (bread)

WHAT: testing of Montelukast (a drug that has been approved by the FDA for treatment of asthma) for the treatment of Celiac Disease

If enrolled, you will be given the drug or a placebo and asked to:

  • Come to up to 6 study visits
  • Have multiple blood draws, endoscopy with biopsy and brushings, and provide stool samples
  • Answer some questions regarding your health


WHERE: University of Chicago Medical Center

Subjects will be reimbursed up to $160.00 if all visits are completed and will receive parking vouchers.



NOTE: This is the exact email I got about the trial. If you have questions, please contact the University of Chicago Celiac Disease Center directly. 

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Monday, September 14, 2015
Save the Date: Celiac Education Day and Free Blood Screening in Chicago
It is time to sign up for the annual celiac disease blood screening day at the University of Chicago Celiac Disease Center. This is a wonderful yearly event that allows people who might otherwise not be tested due to insurance restrictions to get tested for free. Pre-registration is required and there are only 500 spots available. Don't delay, register today!

You are eligible for the Blood Screening if:

  • You have been on a gluten-containing diet for at least 12 weeks prior to testing
  • You have a close family member that has celiac disease or Type 1 diabetes
  • You have Down Syndrome;
  • You have a related autoimmune condition such as rheumatoid arthritis; Type 1 diabetes
  • You have digestive problems, chronic fatigue, osteopenia/osteoporosis; Type 1 diabetes
  • You have other related symptoms or conditions

To learn more and to register, please visit www.cureceliacdisease.org

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Tuesday, October 29, 2013
Free Celiac Blood Screening in Chicago on November 16th
Every fall, the University of Chicago Celiac Disease Center holds a free blood screening to test people who are at risk for Celiac. My friend's daughter got tested and diagnosed with Celiac after this screening in 2013. If you or your loved ones live near Chicago and haven't been tested for Celiac, now is your chance!

According to the Center's website: "You are eligible for this free blood screening if you are at risk for celiac disease and are eating a regular, gluten-containing diet. There is no need to fast before the test. The antibody screening tests for celiac disease are not accurate if one is following a gluten-free diet. If you have removed gluten from your diet, it will typically require that gluten is reintroduced on a daily basis, with at least one serving per day (1/2 slice of bread or a cracker), for at least 12 weeks prior to the antibody blood screening tests. This is sometimes referred to as a gluten challenge, which should only be conducted under a physician’s supervision."

Pre-registration is mandatory, so please visit the University of Chicago Celiac Disease Center website today to begin your pre-screeming and registration.

http://www.cureceliacdisease.org/living-with-celiac/screening

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Tuesday, September 10, 2013
NYC Launch Party for The University of Chicago Celiac Disease Center
I'm really excited to announce this event to my New York City readers! I will definitely be there.



BUY YOUR TICKETS TODAY!


EVR Lounge
54 West 39th Street New YorkNY 10018

Friday, October 18, 2013
6:00 PM to 9:00 PM (EDT)



We have celiac disease. We eat gluten-free. But that doesn't mean we don't know how to PARTY! 
You're officially invited to The University of Chicago Celiac Disease Center's debut fundraising bash in NYC!
It's a night you'll want to be part of, and your ticket INCLUDES:
  • An hour-long open vodka bar hosted by Devotion Vodka (6-7pm)
  • Delicious, hot, gluten-free Margherita pizzas served by world-renowned pizza chef Roberto Caporuscio of Don Antonio's
  • Live music by AJ Smith
  • Celebrity Host Miss New Jersey Jenna Drew
  • A silent auction/raffle with fabulous prizes from the best NYC gluten-free hotspots
  • Your favorite gluten-free finger foods
It doesn't matter if you have celiac disease, a gluten intolerance, or have no idea what gluten is. Party among friends and make new ones that share one simple thing: they eat gluten-free or know someone who does!  
Come support your friends or family and the cause in honor of one of the least understood but most widespread (and growing) health problems of our age at the largest gluten-free party in the city.
100% of the proceeds - yes, every single cent raised - goes toward supporting The University of Chicago Celiac Disease Center's awareness and outreach programs. Learn more on the right sidebar and at http://cureceliacdisease.org.
***
MAJOR SPONSORS
EVR Lounge
Devotion Vodka
Don Antonio's
AJ Smith
Jenna Drew, Miss New Jersey
Nora Zelevansky, Author
WithumSmith + Brown

LOCAL SPONSORS
Whole Foods Market
Bistango Ristorante
Rosa Mexicano
Tu-Lu's Gluten-Free Bakery
Palà
Hu Kitchen
Pip's Place Cakery
Babycakes
S'MAC
Sun In Bloom
Be Well With Arielle
Get That Healthy Feeling
***

BUY YOUR TICKETS TODAY!


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