GliadinX

[CristinaR]

Good morning, I am new to this forum so forgive me if this has been asked a thousand times already. But for those who have tried gliadinX, do you feel it has worked for you? Any side effects? I follow a gluten-free diet very strictly, but I feel like I have lost my love of going to restaurants. I am wondering if this supplement might help me feel more confident about having a meal outside of home again. Curious about other’s experience with it. Thanks!

[trents]

I would caution against seeing gliadinX as anything more than a stopgap measure when you are in a situation where you have no choice but to eat out and you are simply doing what you can to mitigate cross contamination even though you have been appropriately selective in your menu choices as a celiac. I would not encourage you to see it as something giving you permission to eat out free of worry about being glutened.

[Scott Adams]

So my daughter, mother and myself have been using it for a couple of years now with no side effects whatsoever. Full disclosure they are a site sponsor here. You can read this true story of an incident with my mom, who is also gluten-free, at a past Thanksgiving dinner at my house:

I disagree that it is just a "stopgap," and personally believe that it is one of the most important developments that has happened in the 25 years I have been operating this Web site. If I could afford to take one with every meal, even the ones we prepare at home, I would do that. AN-PEP has been well studied and does break down small amounts of gluten in the gut, so is perfect for dealing with cross-contamination or trace amounts of gluten that could still be found in products, which can even happen in ones that are labelled "gluten-free."

Several studies have shown that up to 90% of celiacs who eat outside of their homes are getting regular gluten contamination in their diets. Personally I think AN-PEP should be part of every celiac's standard treatment, just like certain vitamins and mineral supplements are.

[trents]

Thanks for the correction, Scott. I had the wrong impression from some other things you had said about your daughter's use of it. I have never used it personally. I just want the OP to understand using GliadinX is not a silver bullet for celiac disease and should not tempt her to throw caution to the wind when eating out.

[Scott Adams]

I agree that AN-PEP or any other enzyme product (there are other companies that make similar products), should never replace a vigilant 100% gluten-free diet, or lead anyone who use them to lower their guard or deliberately eat gluten. That said, I believe it could help many who have ongoing issues with contamination, and those who will cheat (up to 25% of people when we last did a survey--don't cheat on your diet!).

[CristinaR]

6 hours ago, trents said:

Thanks for the correction, Scott. I had the wrong impression from some other things you had said about your daughter's use of it. I have never used it personally. I just want the OP to understand using GliadinX is not a silver bullet for celiac disease and should not tempt her to throw caution to the wind when eating out.

I’m way too scared to purposely ingest gluten. But sometimes eating outside of home feels like such a gamble and has taken away the fun of it. I’d love to just be able to let go of some of the anxiety of possible cross contamination. I don’t know, I suppose that gets better over time. But here I am almost 3 years on a gluten-free diet and it still effects my ability to relax and just enjoy myself.

[Scott Adams]

I think that like anything, some people might abuse these and use them to eat gluten. However, if you maintain your strict gluten-free diet, and then add these to it, especially whenever you eat outside your home, I believe that this approach will improve the health of most celiacs. As the article I posted mentions, there also seems to be no issues with taking more of them, like 3-5 capsules, should you ever accidentally eat gluten.

[Kate333]

20 hours ago, CristinaR said:

I’m way too scared to purposely ingest gluten. But sometimes eating outside of home feels like such a gamble and has taken away the fun of it. I’d love to just be able to let go of some of the anxiety of possible cross contamination. I don’t know, I suppose that gets better over time. But here I am almost 3 years on a gluten-free diet and it still effects my ability to relax and just enjoy myself.

Same here. 

IMO these dietary "supplements"--like so many others on the market offer customers no more than unproven marketing claims, wishful thinking, and dangerous false sense of security that can actually seriously hurt people with celiac disease disease by misleading them.  (Beano and Lactaid are 2 others that come to mind, and supplements are not even regulated for safety, effectiveness in the US.)  It's like deciding to go out into a rainstorm with an umbrella full of holes and magical thinking, hoping you won't get drenched because you don't want to get drenched.  People who risk doing this remind me of those who wash down triple bacon cheeseburgers with a Diet Coke, thinking the Coke will protect them from the health consequences of eating a diet high in saturated fat....LOL 

Bean/dairy indigestion alone cannot irreparably damage the intestine.  Gluten CAN and GI experts tell us avoiding ALL gluten is the ONLY effective treatment to date.  (Hopefully, that will change very soon if recent vaccine research/trials begin to bear fruit.)  In the meantime, why would anyone--even those with few overt symptoms (so-called "silent" celiacs)--want to take even a remote risk of damaging their gut?? 

Cristina is right.  Living with constant health anxiety and food paranoia really stinks...but it's far preferable to sustaining real, possibly irreversible intestinal damage.    

[RMJ]

Sometimes life does not allow one to avoid all dietary risks of damaging the gut without assistance.  When visiting my 96 year old father  (prior to COVID) I stayed in his apartment and had to eat in the dining hall at his facility.  I ordered items marked gluten free from their menu but I didn’t trust them.  So I also took GliadinX.  I am a scientist, I have read the scientific papers about the enzymes and I feel that they can help without doing harm.

Some doctors seem to think that one shouldn’t take an enzyme like GliadinX because it doesn’t take care of 100% of any amount of ingested gluten.  That is like saying don’t wear any mask during the pandemic because a mask isn’t a 100% guarantee that one won’t get COVID. I don’t take GliadinX so I can cheat or be careless.  I take it to handle the tiny bit of gluten contamination that is unavoidable in some situations.

[docaz]

7 hours ago, Kate333 said:

Same here. 

IMO these dietary "supplements"--like so many others on the market offer customers no more than unproven marketing claims, wishful thinking, and dangerous false sense of security that can actually seriously hurt people with celiac disease disease by misleading them.  (Beano and Lactaid are 2 others that come to mind, and supplements are not even regulated for safety, effectiveness in the US.)  It's like deciding to go out into a rainstorm with an umbrella full of holes and magical thinking, hoping you won't get drenched because you don't want to get drenched.  People who risk doing this remind me of those who wash down triple bacon cheeseburgers with a Diet Coke, thinking the Coke will protect them from the health consequences of eating a diet high in saturated fat....LOL 

Bean/dairy indigestion alone cannot irreparably damage the intestine.  Gluten CAN and GI experts tell us avoiding ALL gluten is the ONLY effective treatment to date.  (Hopefully, that will change very soon if recent vaccine research/trials begin to bear fruit.)  In the meantime, why would anyone--even those with few overt symptoms (so-called "silent" celiacs)--want to take even a remote risk of damaging their gut?? 

Cristina is right.  Living with constant health anxiety and food paranoia really stinks...but it's far preferable to sustaining real, possibly irreversible intestinal damage.    

This is just a recent paper that describes how enzymes including AN-PEP (the main enzyme in GliadinX) break down the gliadin molecule before it enters the small intestine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6530343/ 

These enzymes do not cure celiac disease because they do not have any systemic effect on the body but what they do is essentially help maintaining a gluten-free diet by breaking down contaminants.

Here is a publication by clinicians at the University of Chicago suggesting that GliadinX can break down 1/8 of a slice of bread. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6024684/

It is only unproven for those who chose to ignore the research but fortunately, the opinion has been changing over the last couple of years. Yes, there are many formulations with catchy names that do not work but clinicians are seriously looking into enzymes that are promising, including the Mayo Clinic that is in the process of studying Latiglutenase, which works similarly to GliadinX.

To use your metaphor, by not taking a 50 cents capsule you go out in a rainstorm with an umbrella with holes because a true gluten-free diet does not exist unless you never eat anything out of your house and you never eat any processed food inside your house. You never know when gluten will rain through an umbrella and every single celiac person has encountered contamination unknowingly or even knowingly. Some people can live in complete isolation but for most that is not a lifestyle they can or wish to maintain. Some people want to go to a family dinner or go on vacation, or send their kids to a party with friends or go to a business lunch without unpacking their own food. Other people can isolate themselves and either do not participate in such events or bring their own food but that carries an huge emotional burden which is very well documented. 

A vaccine is at least 10 years away because a recent one Nexvax turned out to be a failure and there is nothing in the works.

I have created GliadinX because two of my children are celiac and I wanted them to have a better lifestyle. I am fortunate to have been in the biotech field and was able to connect with the creators of AN-PEP in Europe before it even came to the market. The blood levels of my children have been very high when they were diagnosed but then stayed excellent over the last 8 years since they did started taking GliadinX. 

I can also mention, that one of the largest double blinded clinical studies is in the works to be conducted soon (unless COVID causes a delay) by a group of internationally recognized clinicians. I hope for the sake of my own children and every other celiac person that a vaccine will be found and that GliadinX will become obsolete because GliadinX is a crutch but so far it is the best there is.

 

 

[Dorene Stahl]

I was diagnosed two years ago and am on a strict gluten free diet. I never go out to eat and cleaned out all old pans, utensils and cutting boards. 
had an EGD done in December because I was still feeling sick and results came back saying I have gluten in me. 
i am so anxious and depressed by this. 
checked with pharmacist about my medication and he says it’s all gluten free. I’m at a loss and afraid to eat anything!  

[trents]

2 hours ago, Dorene Stahl said:

I was diagnosed two years ago and am on a strict gluten free diet. I never go out to eat and cleaned out all old pans, utensils and cutting boards. 
had an EGD done in December because I was still feeling sick and results came back saying I have gluten in me. 
i am so anxious and depressed by this. 
checked with pharmacist about my medication and he says it’s all gluten free. I’m at a loss and afraid to eat anything!  

 

Do you use prepared foods, even those labeled gluten free? "Certified Gluten Free" should be safer and more consistently live up to the billing.

Do you use foods whose allergen label says things like, "produced on equipment that also handles wheat .  .  .?"

Could you be absorbing gluten externally through shampoos, lotions, etc.?

Edited January 4, 2021 by trents

[Dorene Stahl]

I do only eat certified gluten. I check lotions etc.  I have in the past eaten stuff that does say gluten free but manufactured in a plant that handles wheat. Perhaps that could be my problem. I won’t anymore. 

[Mikeymike93]

On 12/23/2020 at 9:21 PM, CristinaR said:

I’m way too scared to purposely ingest gluten. But sometimes eating outside of home feels like such a gamble and has taken away the fun of it. I’d love to just be able to let go of some of the anxiety of possible cross contamination. I don’t know, I suppose that gets better over time. But here I am almost 3 years on a gluten-free diet and it still effects my ability to relax and just enjoy myself.

Same with me. I was gluten free for 2yrs and was scared to ingest gluten because of the stories of how I might react. But I was told to go on a gluten challenge and retest. I was scared to start and even held off starting the diet bc work was busy and I didn't want to get sick. However after starting it I didnt feel any different so I guess everybody is different. The only way to know how you will react is to try eating a tiny bit of gluten and see what happens. Then you would know. Because I dont react bad initially, I become curious why not cheat once in a blue moon. Lol

[docaz]

GliadinX was designed for all these situations in which contamination could be present. I encourage all to read the studies that are on the GliadinX website to understand how GliadinX works. It might take a little time but I am convinced that you will find it worth while. 

On a different note, we have instituted a program for people who are in great financial need in particular because of the current pandemic and made GliadinX available for $1 plus the shipping charge of 5.90 (which is our cost for the fulfillment). At this time, the program is only available within the US and you can find it on the GliadinX homepage www.GliadinX.com towards the bottom of the page. Please note, that this is not an advertisement promotion but it is our contribution to help people who are financially struggling. We do not check the financial situation of people ordering and rely on honesty and hope to keep the program going for as long as we can. 

[RMJ]

I had a dream last night where I ate a regular (gluten-containing) cookie,  something I would never do in real life. I was so upset, especially because I realized in my dream that I wasn’t at home and thus didn’t have any GliadinX available!

[docaz]

Here is publication from this month summarizing human and animal studies for various promising ways to address celiac disease including AN-PEP (bottom of page 7), which is the main active component of GliadinX

https://www.researchgate.net/publication/348337489_Going_Beyond_Gluten-Free_a_Review_of_Potential_Future_Therapies_for_Celiac_Disease#fullTextFileContent

[docaz]

For all who are wondering if GliadinX is beneficial or not, the answer will be available. One of the most reputable celiac research centers has evaluated the preliminary data and is now conducting a double blind study on 80 patients comparing placebo with GliadinX. The study is well designed and evaluates multiple parameters including residual gluten immunogenic peptide in stool and urine. This will give a very good indication if GliadinX can prevent and immunogenic reaction.  The study is not sponsored by any company and the only contribution to the study are the active capsules and the placebo capsules. Here is the link to the National Library of Medicine link https://clinicaltrials.gov/ct2/show/NCT04788797

[trents]

Looking forward to this. Please follow-up when the results are in.

[docaz]

5 minutes ago, trents said:

Looking forward to this. Please follow-up when the results are in.

It will take some time because the researchers have learned from earlier studies that were too short including a previous study with AN-PEP that showed no difference between placebo and the active product because there was not enough time for the placebo group to deteriorate. The same problem occurred with a latiglutenase study which was conducted for FDA approval. In both studies the participants who were given gluten a gluten challenge together with the active ingredient did not deteriorate but neither did the participants who received a placebo. This study will be over a period of 8 weeks. The first 4 weeks are basically to establish the difference and the data is collected during the following 4 weeks. The nice thing about this study is also that it is a follow up study of a previous widely discussed one that showed that a very high percentage of people who are on a gluten-free diet ingest gluten unknowingly. The setup is the same so that the gluten-challenge does not represent an ethical issue. You never know how the results of a study will turn out but based on my own experience, I have high hopes that results will show the benefits and will lead to a greatly improved quality of life for many but the data will speak for itself. 

[trents]

I can handle 8 weeks or so. No problem.