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
      132,555
    • Most Online (within 30 mins)
      7,748

    Laura65
    Newest Member
    Laura65
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.