Jump to content
  • 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

Celiac Pill


hit2win1

Recommended Posts

hit2win1 Newbie

Open Original Shared Link

Thoughts? Ideas? Is anyone going to do it?

Basically, it's a pill taken before meals (three times/day) that will allow the taker to digest gluten. During the trial, you MUST NOT eat gluten...they will deliver the gluten via pill, so they know how much the taker has recieved.

It sounds interesting, and makes me hopeful, if nothing else...


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



Celiac.com Sponsor (A8-M):



hit2win1 Newbie

Open Original Shared Link

Thoughts? Ideas? Is anyone going to do it?

Basically, it's a pill taken before meals (three times/day) that will allow the taker to digest gluten. During the trial, you MUST NOT eat gluten...they will deliver the gluten via pill, so they know how much the taker has recieved.

It sounds interesting, and makes me hopeful, if nothing else...

confusedks Enthusiast

Wow! I didn't read the article, but I don't think I could EVER purposely eat gluten. :o It scares me so much! Lol! I could see maybe taking a pill in case I got glutened a restaurant.

Kassandra

ladybugpumpkin Contributor
Open Original Shared Link

Thoughts? Ideas? Is anyone going to do it?

Basically, it's a pill taken before meals (three times/day) that will allow the taker to digest gluten. During the trial, you MUST NOT eat gluten...they will deliver the gluten via pill, so they know how much the taker has recieved.

It sounds interesting, and makes me hopeful, if nothing else...

If I actually had Celiac, I'd do it. I'm just intolerant though, so they probably wouldn't want me. But you're right...definately something to cross our fingers for and look forward to!

cyberprof Enthusiast

I would be interested in it. What a breakthrough it would be if there was a pill to stop not only the bad stomach problems but also the damage. I'd like to help that kind of research. If I was getting glutened on the placebo, though, I'm not sure I could continue if I felt bad, there's only so much I could take.

It's offered at the hospital where I was diagnosed! I'll ask my M.D. at my appointment in September.

Open Original Shared Link

Thoughts? Ideas? Is anyone going to do it?

Basically, it's a pill taken before meals (three times/day) that will allow the taker to digest gluten. During the trial, you MUST NOT eat gluten...they will deliver the gluten via pill, so they know how much the taker has recieved.

It sounds interesting, and makes me hopeful, if nothing else...

happygirl Collaborator

Dr. Fasano is a leading researcher/physician in the field of Celiac Disease. His center is here : www.celiaccenter.org. More info about the pill and the research trials are at: www.albatherapeutics.com.

This isn't the first trial, but its a step in the process.

There were two separate topics about this, so I merged the two threads.

hit2win1 Newbie

I know, it's scary thought. But someone needs to do it. The way the trial works is you stay on your gluten-free diet, and have one of four choices in reguards to the pill:

1) Real pill, placibo gluten pill (they are delivering the gluten via pill so they know how much you are digesting)

2) Real pill, real gluten pill

3) Placibo pill, placibo gluten pill

4) Placibo pill, real gluten pill (this is the one no one wants)


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star
The way the trial works is you stay on your gluten-free diet, and have one of four choices in regards to the pill:

Since it's a randomized double blind study, the more accurate way to state this is: You will be in one of these four subsets and neither you nor your doctor will know which one.

cruelshoes Enthusiast

I would totally participate. Anything to get the pill closer to a reality. Looks like it is going to take place in Seattle, too. I think I will email Alba and see what I need to do to get on the list.

JNBunnie1 Community Regular
I know, it's scary thought. But someone needs to do it. The way the trial works is you stay on your gluten-free diet, and have one of four choices in reguards to the pill:

1) Real pill, placibo gluten pill (they are delivering the gluten via pill so they know how much you are digesting)

2) Real pill, real gluten pill

3) Placibo pill, placibo gluten pill

4) Placibo pill, real gluten pill (this is the one no one wants)

I don't understand why they would include just straight gluten. I mean, they know you have Celiac already, right? So there's no scientific value to damaging people who already they're 'damageable'. Only the other three options have any scientific validity.

Jestgar Rising Star

To rule out the percentage of people who aren't Celiac, had intestinal damage from some other source and happened to get cured at the same time they stopped eating gluten. Crazy, yes, but scientifically a valid control.

Gemini Experienced

I just have huge doubts about the whole thing. It's an autoimmune response and, as the medical profession still knows so little about the immune system and how to control it, I don't see a gluten pill as reality anytime soon. Would I be interested? No. I am so comfortable with th gluten-free lifestyle, I could care less if I ever eat gluten again. I was so sick at the end before diagnosis, the thought of gluten turns my stomach. :unsure:

amberleigh Contributor

I would TOTALLY do this study...but I don't see it in Missouri anywhere. Can you participate if it's not in your state?

par18 Explorer
I just have huge doubts about the whole thing. It's an autoimmune response and, as the medical profession still knows so little about the immune system and how to control it, I don't see a gluten pill as reality anytime soon. Would I be interested? No. I am so comfortable with th gluten-free lifestyle, I could care less if I ever eat gluten again. I was so sick at the end before diagnosis, the thought of gluten turns my stomach. :unsure:

Same here. I "can" participate but not the least bit interested. I feel fine on the diet and don't wish to eat gluten in any form. However good luck to the researchers and all who do wish to participate.

Tom

hit2win1 Newbie

You can, but you may need to pay for travel to/from the doctors...and I don't know how often you'd need to see them. I know that because I'm on a clinical trial for a different illness that my treatments need to be done in the medical office. But my treatment is given via IV...and it isn't three times a day.

I would bet on monthly visits. If you don't mind a day in the car, and you can drive to the doctor's office, then you probably could participate.

I would call the office nearest you, and see what they say. It can't hurt to ask

SunnyDyRain Enthusiast

I have thought about this, even before this post. I would be willing to do this if i had no other commitments. I think I can deal with being sick in the name of resreach, I can't deal with being poor and unemployed and homeless and being sick. If i didn't have to work for a living and be employed to live i'd do it. But I doubt the trial pays enough for me to be sick for monthes.

pixiegirl Enthusiast

I have no desire to eat gluten again, however; with all the travel I do... I'd welcome this pill... I very rarely get glutened, maybe once a year at most however my last glutening was LAST NIGHT and I'm so ill that if I had the ability to take a pill before I ate out, I would. I certainly hope the pill not only blocks the "sick" response but somehow makes it so you don't get gut damage. But either way, anything that would prevent me from going thru how sick I get when I get any gluten at all would be so welcome.

Susan

hit2win1 Newbie

Yes...they say that the pill works to break down the gluten before it reaches your intestines...making it as if you hadn't eaten any in the first place.

buffettbride Enthusiast

As a parent of a child Celiac, I don't know if would blatently let her have gluten and rely on a pill to make her better, but I'd love it as an option if she were accidentally glutened to help ease some of those symptoms. Perhaps on a special, special occasion let her have one of her favorite gluten foods. We too have embraced the gluten-free lifestyle and it is wonderful to have a healthy, happy daughter again. I bet if she were an adult, she would volunteer for the study on her own.

However, I commend ALL of you who would potentially be sick (and/or damaged) for a long time to help further this research. The immune system is a tricky booger, but you have got to start somewhere I suppose. Look at all the advances made for diabetics just in the last 50 years?

So, to anyone who chooses to participate, thank you. :D

Phyllis28 Apprentice

I would also like to thank anyone who chooses to participate and takes the risk of being ill. I can not participate because I was not diagnosed by a biopsy.

I would still eat gluten free even if a pill is available. I would only take it prior to eating out to prevent a glutening from Cross Contamianation.

JodiC Apprentice

I just spoke with the Mayo Clinic (I doctor with Murray) and they are doing the trials right now. In fact this is the 2nd phase of trials they are doing. I am not able to do the trial because I only quit smoking a week ago and you have to be quit for 6months or longer. Also your BMI must be between 18.5 and 38, no alcohol for 48 hours before the tests, cannot be on medications such as enzymes, anti-imflammatories, PPI's, ets. Also minimal amounts of Vita D can be taken (I take 50000 IU/week). They do testing once a week and you need an overnight urine collection for the appts. You see the gastroenterologist 4 times during the 60 day trial. You consume no gluten during it except for the pill. I would do this study in a heartbeat but do not qualify and I live 4 hours from the Mayo Clinic. They do however pay for gas/mileage and $350 at the end of the study.

I commend all who are doing the study. I would gladly be a participant if able. I guess the first phase of the study looked very promising and they will have information available very soon.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.