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
hit2win1
Posted

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
hit2win1
Posted
  • Author

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
confusedks
Posted

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
ladybugpumpkin
Posted
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
cyberprof
Posted

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
happygirl
Posted

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
hit2win1
Posted
  • Author

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
Jestgar
Posted
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
cruelshoes
Posted

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
JNBunnie1
Posted
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
Jestgar
Posted

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
Gemini
Posted

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
amberleigh
Posted

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
par18
Posted
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
hit2win1
Posted
  • Author

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
SunnyDyRain
Posted

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
pixiegirl
Posted

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
hit2win1
Posted
  • Author

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
buffettbride
Posted

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
Phyllis28
Posted

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
JodiC
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
    2. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    3. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    4. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    5. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,294
    • Most Online (within 30 mins)
      7,748
    laurallee
    Newest Member
    laurallee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • 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.