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 Apprentice
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
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.