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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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Blogger Dick said...

You left out the best part: "If enrolled, you will be given the drug or a placebo and asked to: ...". Or a placebo! So probably half the people in the study are guaranteed to get glutened without even any help (debatable) from the study drug.

I'm retired, so I wouldn't miss any work, but I could get pretty sick up to six times. And from what you've found out, a person could have some fairly unpleasant symptoms even if they got the study drug and it worked. Besides, the UofC area is about an hour drive from where I live. $160 would not be nearly enough.

Blogger Unknown said...

I cannot imagine willingly eating gluten. Beyond missing work and not being able to function for days, what about the long-term damage? Crazy.

Anonymous Anonymous said...

Absolutely NO!

Anonymous Anonymous said...

I think at this stage in the trials, it may be best suited for "silent celiacs" to do the study, i.e. the ones who don't have many life-interrupting symptoms of getting glutened but their antibody levels/small intestine still respond to the presence or absence of gluten.

Blogger Unknown said...

Insanity. Anyone who is a true celiac would never endure the pain consuming gluten entails, only for a drug that promises the same side effects! It's not always easy to avoid gluten, but no piece of cake, slice of pie, or crunchy cookie is worth it. A drug that can help alleviate symptoms after accidentally being "glutenated" is a more worthwhile goal. But again, if the side effects of the drug are the same as being glutenated I wouldn't take it.

Blogger Mom said...

I wouldn't do it. Just simply not worth it to me regardless of the reimbursement.

Anonymous Anonymous said...

Understand your frustration with this study, but looking at the bright side we're starting to hear about drugs to treat celiac. Very exciting....

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