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

Has Anyone Heard Of The New Enzyme Being Developed?

metsfan11

Recommended Posts

metsfan11 Newbie
metsfan11
Posted

My mom told me about it the other day, and said that a lab in Maryland had a successful trial with an enzyme that enables celiacs to have gluten and be ok. I googled it and got this:

Open Original Shared Link

Open Original Shared Link

Sounds good to me! ;)

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

Celiac.com Sponsor (A8-M):


Teacher1958 Apprentice
Teacher1958
Posted

If that ever happens, I will fly straight to New York City and eat out at Da Nico's. That would be sooooooooooooo awesome!!! Next, I would fly back and drive to Wooster, Ohio, where I would have a Coccia House Pizza. Then I would find somewhere that serves vegetable tempura. After that, I would go to the Olive Garden and have their eggplant parmesan. I'd find a Mexican place and scarf down some chili rellenos. I would also need to track down some spaghetti, a chimichanga, and the Floridian French toast at First Watch, then to Bob Evans for some blueberry pancakes followed by anything vegetarian at Cafe Tandoor in Westlake, Ohio. I would have to have several types of scones to celebrate my Irish heritage as well. This could go on forever theoretically, so I will stop now. Suffice it to say that eating out used to be my favorite activity in the whole world!

holdthegluten Rising Star
holdthegluten
Posted

I guess I will at this to my prayer list...........please say it works!

holdthegluten Rising Star
holdthegluten
Posted

I just noticed that the article is almost a year old...... hopefully they are still trying to approve it

  • 2 weeks later...
namklak Newbie
namklak
Posted

It appears that clinical trials are next. Who will pay for a clinical trial of a cheap food mold? This will include the cost of repeated EGDs. Clinical trials include a control group who will be taking a placebo and eating gluten - care to volunteer? I'm not feeling real positive about this will ever happening...

SunnyDyRain Enthusiast
SunnyDyRain
Posted
It appears that clinical trials are next. Who will pay for a clinical trial of a cheap food mold? This will include the cost of repeated EGDs. Clinical trials include a control group who will be taking a placebo and eating gluten - care to volunteer? I'm not feeling real positive about this will ever happening...

I agree, I have been interested in doing trials before, and It always came down to...what If i'm in the placebo group?

If it does come through, I would prolly use this sparingly. Prolly pop one if I'm eating out, or a If I want some thing with a small amount of gluten.

I probally would not have myself a big bowl of pasta.

chrissy Collaborator
chrissy
Posted

there are a couple of things hoping to treat celiac disease in the works right now. besides the enzyme, there is the zonulin antagonist that dr. fasano is working on-----it is already in the second phase of human trials. i have read somewhere that a combo of the enzyme and the antagonist might work pretty well. our ped gi tells me that there are hopes of developing a celiac vaccine. of course, this wouldn't help my girls any since they already have it, but their kids might not have to worry about celiac.

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

Celiac.com Sponsor (A8-M):


Murph Newbie
Murph
Posted

I've heard of 2 such efforts (AT1001 & a Stanford effort) but I don't believe either will work. celiac disease is not like lactose intolerance where the symptoms are temporary and relatively minor compared to celiac disease.

I think it just doesn't work that way - it's not just a missing enzyme.

I've had far too many of the symptoms on these 2 pages to ever consider having gluten again. (Especially the 2nd list)

https://www.celiac.com/st_prod.html?p_prodi...-15104373588.a8

https://www.celiac.com/st_prod.html?p_prodi...-15104373588.a8

debmidge Rising Star
debmidge
Posted

I don't think Zonulin is an enzyme ... I think they have a website to read how it works. It's not like lastase (Lactaid) - I believe it works on the cell level.

It's already in human trials.

chrissy Collaborator
chrissy
Posted

the AT1001 is a zonulin antagonist. zonulin is the chemical in our bodies that controls the "gates" in the small intestine that let food proteins out where they don't belong. in celiacs these gates get stuck open. AT1001 controls the amount of zonulin so that the gates stay shut when a person eats gluten. this is by no means intended to be a cure, but it sure could make things easier for celiacs.

Derek Borckmann Newbie
Derek Borckmann
Posted

I looked on thier website and found some results of the testing. Seems real positive but time will tell.

Open Original Shared Link

  • 4 weeks later...
maryjk Newbie
maryjk
Posted
our ped gi tells me that there are hopes of developing a celiac vaccine. of course, this wouldn't help my girls any since they already have it, but their kids might not have to worry about celiac.

I was just at the GIG conference and heard Dr. Fasano speak.

According to him, the vaccine would be for EVERYONE. Even if you already have Celiac, it would be for you.

Also, the time frame that he gave was

2-3 years for detoxified grains

5-8 years for Anti-Zonulin Pill

15-20 years for the Vaccine

He spent quite a while explaining how the pill would work. It is not like lactaid or whatever it is called. It blocks the production of Zonulin. Zonulin is what opens the doors in our intestines and allows the gluten in. Keep the doors locked and the gluten would not enter. (This is a very general explanation. The doctor spoke for an hour, this being the topic for about a third of it

Guest Doll
Guest Doll
Posted
I've heard of 2 such efforts (AT1001 & a Stanford effort) but I don't believe either will work. celiac disease is not like lactose intolerance where the symptoms are temporary and relatively minor compared to celiac disease.

I think it just doesn't work that way - it's not just a missing enzyme.

I've had far too many of the symptoms on these 2 pages to ever consider having gluten again. (Especially the 2nd list)

https://www.celiac.com/st_prod.html?p_prodi...-15104373588.a8

https://www.celiac.com/st_prod.html?p_prodi...-15104373588.a8

AT-1001 actually CLOSES the leaky gut. I am *very* excited about it. It could be applied to the treatment of *all* autoimmune diseases.

I cannot wait. It actually fixes one of the root causes of the pathology of autoimmune disease, including Celiac.

debmidge Rising Star
debmidge
Posted

It sounds very exciting and more info can be found at albatheraputics.com

  • 2 weeks later...
mfl Newbie
mfl
Posted
My mom told me about it the other day, and said that a lab in Maryland had a successful trial with an enzyme that enables celiacs to have gluten and be ok. I googled it and got this:

Open Original Shared Link

Open Original Shared Link

Sounds good to me! ;)

radgirl Enthusiast
radgirl
Posted

This would be an absolute God send. We can gather as a big group and fly all over the world and eat like kings. :D

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. 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...
    2. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      7

      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...
    3. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      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...
    4. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
    5. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Thanks to those who have replied. To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia. Generally feeling unwell. To Trents, We didn’t do any of the construction but did v...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,288
    • Most Online (within 30 mins)
      7,748
    Greg R.
    Newest Member
    Greg R.
    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

    • 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.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
×
×
  • 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.