Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Drug For Celiac Disease? Would You Take It?


LFitts

Recommended Posts

LFitts Apprentice

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

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.

Christine0125 Contributor

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.

LFitts Apprentice

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.

KristenS Rookie

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... ;)

vbecton Explorer

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!!

cavernio Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rehh05 Apprentice

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

Zibby Rookie

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!

anngf4life Rookie

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - dixonpete commented on dixonpete's blog entry in Pete Dixon
      1

      An early incubation and inoculation

    2. - nanny marley replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Is it gluten?

    3. - nanny marley replied to nanny marley's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      New here help needed

    4. - Woodster991 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Is it gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,571
    • Most Online (within 30 mins)
      7,748

    Emi9catch
    Newest Member
    Emi9catch
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • nanny marley
      I was also told I had IBS years ago like literally it's just IBS the docter said I've had lots of  the symptoms you say there plus much more but I'm convinced it's not just IBS although I feel very sorry for people who get told this too because IBS is a real problem for people too it's awfull how much ignorance is around in the world these days from docters try the elimination diet like I did gluten free I also did lactose because it was still bothering me I found a real big change I've read some members here say  it can be quite hard to get a diagnosis and help but there is plenty of self help here it's not wrong to self diagnose if you find that it truly is a Life changer be true to your own needs and ask people already suffering for advise it's about your quality of life now and for future this us were I'm heading if I have no luck with docters I will have luck helping myself 🤗
    • nanny marley
      Thankyou for that information yes I totally relate to that it's a very good read and I've felt like that too to the point were going out for dinner was aniexty before I even left home and it's funny her name is jean because that was my grandma's name and I also  believe she  coeliac undiagnosed because I look back now and she couldn't tolerate most things like me unfortunately she got bowel cancer it's such a shame it's so unrecognised by the medical profession and by people too who do t suffer it because it can be very hard living with it so thankyou so much for this 
    • Woodster991
      I've had ibs for years however I have noticed recently when I've had alcohol and then the usual hangover takeaway I get a whole range of symptoms. To start with  Gurgling in stomach  Brain fog Occasional cramps  Diarrhea  Severe constipation where it comes out in slithers and very dry  Knot in lower right abdo side. Sensitive area to touch  Alot of mucus when passing stools  Feel sick    Had tests done but all came back okay apart from low in vitamin d
    • nanny marley
      Your on the right track lactose was a good change for me too this is a great forum keep asking questions I think we both found a pot of gold here to help us 😊 x
    • trents
      Ichthus is the Greek word (using English letters) for fish. The letters in the actual Greek word form an acronym that come from the first letters in the Greek words for "Jesus", "God's Son," "Savior".   Now, back to your family's denial of your celiac disease, I think you can relate to this:  
×
×
  • Create New...