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Tuesday, November 25, 2014
Get Paid to Eat Gluten!
Last night, I received a late email from the Celiac Disease Center at Columbia University. The email was a request for participants in a research study. Here is the body of the email: 

Does Gluten Make You Sick? Adults with celiac disease or non-celiac gluten sensitivity needed for a research study! 

Why?
To find out more about the bacteria that live in your colon and on your skin. 

What Is Involved? 
Eat 2 slices of bread a day for 2 weeks (“gluten challenge”) Do 3 blood tests, take 5 skin swabs and submit 5 stool samples. 

Will I be paid? You will receive $150 for your time 

Let me preface this post by saying I have a lot of respect for the doctors at the Celiac Disease Center. I have known the doctors and staff at the Celiac Disease Center for years. Many of my NYC Celiac Meetup members have been diagnosed with celiac disease by the doctors at this Center. I hold an annual fundraiser for the Celiac Disease Center. I always suggest the center to people in NYC and the surrounding areas looking for answers about their gastrointestinal health.

But when I read this email last night, I couldn't help but be confused and slightly offended. I understand research needs participants, but how do you monetize someone's health and well being? How do you put a price on pain and suffering people with celiac need to endure in order to further your research? Is $150 enough money for me to be violently ill for 2 week of gluten hell?




I was sure I was not alone with my feelings, so I took this email and posted it on both Twitter and Facebook. WHOA. The overwhelming response from my readers is that they are also offended and many are especially angry. Here are a few examples:

"$150 for your "time"? I'm very curious if the pioneers of this study have celiac themselves, and if they know how it feels to have the disease and eat 2 slices of bread for even just one day. The years leading up to my diagnosis that I unknowingly suffered the disease and ate gluten were some of the hardest years of my life, affecting me both physically and mentally. You can't put a price on your health and extreme discomfort. Celiacs who eat gluten for 2 weeks will continue to feel the affects for longer than just those 14 days, some more severely than others."
"a mere $150? seriously?? I couldn't do it for $150,000 -- it is not worth it!" 
"Could have done it when newly diagnosed but not now. I do understand the need for research subjects, though. I wish there was a lot more research into treating celiac." 
"If they paid me the money I would miss for not working for a month or more, plus pain and suffering, maybe. And a full skud of extra soft TP."
 "NO, NO, NO, NO!"

Again, I understand that doctors need to do research. I just wonder how exactly how much damage two-weeks worth of gluten would do to my body. Do doctors even know the long-term affects of feeding a celiac gluten after they have healed their body? Does this two-week challenge increase the chances of additional intestinal complications such as cancers, infertility, and more?

I went through a gluten challenge (intentionally eating gluten) thirty years ago when I was six years old. The doctor scheduled the gluten challenge for a Friday. My parents had to tell my teachers that I was allowed to eat gluten for the day. I vaguely remember getting violently ill by the end of day one and stopping the challenge that weekend. It was the only time in my life that the doctor gave me the green light to eat gluten and if a doctor ever told me to eat gluten again, I would find a new doctor immediately.

As I have gotten older, my reaction to gluten has become more severe. I would not be able to complete day one of this Celiac Disease Center study. I would be on the floor of the bathroom with the gluten coming out from all ends. I would be dizzy, foggy, and confused. I would be tired and achy. I would be MISERABLE.What is my suffering worth? It's definitely not worth a measly $150.

Join the Facebook conversation. I want to hear from you! Put your comments below. I want to know what you think!





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2 Comments:

Thanks again for sharing the info on this study, Erin, as well as your own personal experience on how severely you react to gluten. I so agree with you. There just has to be a better way to research celiac/NCGS.

As one person said when I shared this info on my FB page, they're likely to get folks who are not strictly gluten free because they don't have severe reactions and that fact alone will skew their study results.

If anyone who is celiac or strictly gluten free for any other medical reasons takes part, they're likely to see other serious health conditions triggered. Will they follow these participants down the road and see what happens to them? Not likely, but we all have been warned of how even a tiny bit of gluten can keep damage going and predispose us to the development other autoimmune conditions. Just crazy on so many levels.

Shirley

Anonymous Cari A said...

They need to seek out people who have just been diagnosed and haven't gone gluten free yet. Once you've gone gluten free and begun to feel better, the idea of going back to consuming gluten is just unfathomable.

Seriously, as much as I believe in furthering research, I would never participate in such a study for any amount of money.

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