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Lotte18

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Lotte18 Enthusiast

Hi Aretaeus,  Sorry to hear you didn't get into any of the trials.  But I assume if they can turn people away they're getting enough candidates.  And that's good news I suppose.  I thought about several of those as well, but I just balk at the idea of placebos.  It's one thing not to get the drug, in let's say, a cancer trial.  But for us to not get the drug, and voluntarily poison ourselves with the gluten challenge, (the Stanford study looks like daily gluten intake) just seems so wrong.  How long does the placebo effect actually last?  One, two, three weeks?

Did you ever try Zed1227?  I can't remember the numbers exactly, but it was something like that.


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Aretaeus Cappadocia Collaborator
On 3/16/2026 at 3:46 PM, Aretaeus Cappadocia said:

I volunteered for a total of 3 this year (that's all I found). All rejected me, but one only rejected me because I don't live near a study center for the trial, so maybe if they open new trial centers they'll contact me.

https://celiac.org/icureceliac/participate-in-research/

- AVALON is a Phase 1 clinical trial assessing VTP-1000. Phase I trial for a drug to reduce celiac disease symptoms from accidental gluten exposure by promoting tolerance to gluten

- Forte Biosciences Celiac Disease Study (FB102-301). Phase II trial for a drug to treat symptoms and intestinal damage when gluten is ingested

https://clinicaltrials.stanford.edu/trials/p/NCT04524221.html

- PTG-100 for Patients With Celiac Disease. Phase I trial for a dye to be used with diagnostic endoscopy without requiring a gluten challenge

As a side note to the moderators ( @Scott Adams ), "Clinical Trial Tracking" would be a good Forum topic for this site (maybe I'm just using the wrong search terms).

Gonna reply to myself here...

There don't seem to be many celiac-related clinical trials that are actively recruiting for volunteers. I am aware of the 3 listed directly above, and now a 4th one:

DAISY Study Recruiting Now. To be eligible, you need to be 18–75 years of age, have a diagnosis of celiac disease with intestinal damage, and still experience symptoms of celiac disease despite attempting a gluten-free diet for at least 1 year. 

https://celiac.org/2026/03/19/daisy-study-recruiting-now-travel-compensation-included/

I didn't read further or contact them because I wouldn't qualify. However, if anyone is still seeing symptoms after trying to go gluten free, I would recommend looking into this study. Even if you don't volunteer, you might learn something useful to your situation.

Aretaeus Cappadocia Collaborator
On 3/17/2026 at 6:42 AM, Lotte18 said:

Hi Aretaeus,  Sorry to hear you didn't get into any of the trials.  But I assume if they can turn people away they're getting enough candidates.  And that's good news I suppose.  I thought about several of those as well, but I just balk at the idea of placebos.  It's one thing not to get the drug, in let's say, a cancer trial.  But for us to not get the drug, and voluntarily poison ourselves with the gluten challenge, (the Stanford study looks like daily gluten intake) just seems so wrong.  How long does the placebo effect actually last?  One, two, three weeks?

Did you ever try Zed1227?  I can't remember the numbers exactly, but it was something like that.

@Lotte18, somehow I missed your post until today. Please don't misunderstand: these trials need more volunteers. They turned me away because I didn't meet their criteria. When a clinical trial gets enough candidates they simply close the enrollment (they don't continue reviewing candidates).

fwiw, Phase I trials rarely, if ever, use a placebo arm. 

The current Stanford trial with PTG-100 does not involve a gluten challenge. It's possible that they would use gluten challenge in some arms of Phase II, but I don't know. I was particularly interested in this study because the dye they are using for a diagnostic in my mind has the potential to be further developed into a relatively benign treatment targeting the transglutaminase.

I know it is counter-intuitive to be willing to take a gluten challenge only to get a placebo. However, depending on what I thought of the program, I would be willing to do it. I don't know for sure if I would have gone through with it in the Avalon or Forte studies because I don't know enough about their programs. If they hadn't rejected me outright I would have then done more due diligence on them before fully committing.

I know what placebo effect is, but I don't know how to answer your question about it.

You did accurately remember "Zed1227". Currently they are not recruiting volunteers, but I probably wouldn't qualify for that program either because my celiac seems to be well controlled by my gluten free diet.

Aretaeus Cappadocia Collaborator
1 hour ago, Aretaeus Cappadocia said:

Gonna reply to myself here...

There don't seem to be many celiac-related clinical trials that are actively recruiting for volunteers. I am aware of the 3 listed directly above, and now a 4th one:

DAISY Study Recruiting Now. To be eligible, you need to be 18–75 years of age, have a diagnosis of celiac disease with intestinal damage, and still experience symptoms of celiac disease despite attempting a gluten-free diet for at least 1 year. 

https://celiac.org/2026/03/19/daisy-study-recruiting-now-travel-compensation-included/

I didn't read further or contact them because I wouldn't qualify. However, if anyone is still seeing symptoms after trying to go gluten free, I would recommend looking into this study. Even if you don't volunteer, you might learn something useful to your situation.

responding to myself one last time.

Should have thought of this one sooner. If anyone is interested in knowing about or volunteering for a clinical trial, this is the gold standard resource (the link is preloaded for celiac, but you can change the search parameters):

https://clinicaltrials.gov/search?viewType=Card&cond=celiac&aggFilters=status:rec

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