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Celiac Pill


hit2win1

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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...


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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)


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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.

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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