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New Drug For Celiac Disease? Would You Take It?


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9 replies to this topic

#1 LFitts

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Posted 11 January 2013 - 10:08 AM

When we were at the GI for a follow-up visit this week, there were signs up asking for adult volunteers for Phase III clinical trials for a new drug that will soon be on the market for patients with celiac disease. The drug will supposedly break down gluten and protect patients from damage. I have a pretty good understanding of the drug trial processes and steps, and it will be a very long time (10+ years) before a pediatric version becomes available, assuming the adult form proves to be safe.

I'm interested in knowing if you would take such a drug? Are any of you entering the phase III clinical trials? I would like to hear updates as people begin taking the drug!
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9 year old daughter diagnosed celiac November / December 2012
Postive endoscopy / biopsy, positive antibody test, positive genetic test

She's been gluten free since diagnosis. I've been gluten free with her since Jan 2013.


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#2 Takala

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Posted 11 January 2013 - 03:11 PM

No. These are for formally diagnosed celiacs. They don't acknowledge gluten intolerance. Secondly, it's insane to ask people who don't have problems with willingly complying with a gluten free diet, to further risk their health and continue to create severe auto-immune damage, because a trial would mean that some testers would be getting a placebo, not the drug, and secondly, there is no guarantee the drug would work. I also think that the drug is going to encourage bad behaviors, because of human nature, there are going to be a lot of people who are deliberately then eating gluten anyway, and expecting this drug to "protect" them, just as there are people who just eat way too much junk and fast food in any other category, then expect various statins and diet weight loss pills and hypertensive meds and diabetes meds to "protect" them from the consequences.

Trying to use drugs to make up for the lack of diagnostics and contaminated food supply is doing it backwards, in my opinion.
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#3 Christine0125

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Posted 12 January 2013 - 05:23 PM

I would consider it as a safety net when dining out or at social gatherings. I would not knowingly ingest gluten even with a drug.
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#4 LFitts

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Posted 14 January 2013 - 08:38 PM

After reading through these blogs for the last week, it seems to me that many people have ongoing issues that the gluten-free diet is not fully addressing. If the pill reduced zonulin production or otherwise aided in healing the leaky gut, I would be quite tempted to sign myself up as a guinea pig. Of course, it's not my choice since I'm not the one who is sick, but I will definitely be watching for research and developments.
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9 year old daughter diagnosed celiac November / December 2012
Postive endoscopy / biopsy, positive antibody test, positive genetic test

She's been gluten free since diagnosis. I've been gluten free with her since Jan 2013.


#5 KristenS

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Posted 21 January 2013 - 12:52 PM

I would absolutely try a drug. I would love to be able to eat whatever I wanted again. I am a foodie, and this restrictive life long diet sucks. As I understand it, the IL-15 drug trials were fast tracked due to the sheer volume of people affected by celiac. I am hopefull they pass clinical trials, and is fast tracked to fda approval. If so, I will be travelling to the US to get some! I would give anything for a croissant... ;)
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31 years old

Diagnosis: Severe Malnutrition due to Celiac - November 2012 via biopsy.
Severely iron deficient for 3+ years before diagnosis. No GI Symptoms. Two negative blood tests before biopsy.
IV iron infusions & monthly B12 injections


#6 vbecton

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Posted 21 January 2013 - 01:15 PM

I would! Only because of my lifestyle. When I'm home in my own country eating gluten isn't necessary. When I'm overseas, it's sometimes unavoidable. And only because I have other medical conditions that further restrict my diet to a paleo type diet (but no fruit for me). When I'm in a 3rd world country and all that's available in a village are some pastries filled with meat...that pill would help. Otherwise I eat from my "prohibitive" meat sources I've smuggled over the border. Sometimes my stash gets confiscated, but I always risk it because I've been caught too many times in small villages and no food source. So, bring it on!!
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Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010
Dairy Free 06/2010
Soy Free 05/2010
Legume Free 05/2010
Caffeine Free 05/2007

#7 cavernio

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Posted 21 January 2013 - 05:39 PM

I might try it if trials turned out alright for occasional eating out for celebrations (eg: christmas dinner CC...had to avoid it this year) or going on a trip. But I'm pretty skeptical about many drugs not just for efficacy but side-effects too. Particularly with a drug like this I'd be concerned it'd be geared to break down gliadin only or something and so wouldn't work for barley or oats. And I'm also off dairy and and many others have issues with corn and soy and then there's some foods that are supposed to be gluten free but people still react to as if they had gluten. I can't imagine this drug being anywhere near good enough for me to feel safe while on it.
If there's drugs out there that are designed to stop the immune reaction that would also have it's own issues, like the fact that my peripheral neuropathy isn't apparently caused by the same type of T cells that damaged my intestines and of course if a drug were more general in reducing an immune reaction there's always the worry about other infections.

I don't want to be in trials.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#8 rehh05

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Posted 21 January 2013 - 06:42 PM

I would take a proven drug in a heart beat... but I would not participate in a drug test.
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#9 Zibby

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Posted 22 January 2013 - 02:08 AM

I agree with Cavernio. Drugs have side-effects and some are not identified until they've been on the market for a while. That and I am so sensitive to medications, I think being on a gluten-free diet would be a healthier, more natural approach until the medication is proven safe long-term. It's great though that companies are working on a solution though and I really hope it turns out well!
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#10 anngf4life

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Posted 22 January 2013 - 06:34 PM

I agree with the safety net option for nights out or on vacation but not for everyday, not too big on taking pills.
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