GliadinX available

[PME]

Just a little PSA...maybe most folks here already know this out of pure vigilance...but GliadinX is now available to be ordered again. Just ordered mine from Amazon. Interested to try it.

[CKOwen]

Enzymes don’t work for Celiac Disease though. This idea that people can just take an enzyme and it will make eating gluten okay needs to go away. Why risk your health on this? 

[trents]

10 minutes ago, CKOwen said:

Enzymes don’t work for Celiac Disease though. This idea that people can just take an enzyme and it will make eating gluten okay needs to go away. Why risk your health on this? 

You misunderstand what the purpose of GliadinX is and it's intended use. No one is saying that if you use GliadinX you can eat all the gluten you want. It is designed to provide some measure of protection against minor amounts of gluten such as you might get through cross contamination when eating out. And your statement, "enzymes don't work for celiac disease" is not a proven fact, though it may be your opinion. GliadinX seems to help some celiacs when used for it's intended purpose. This is largely anecdotal at this point but our administrator, Scott Adams, testifies that it works for him.

[PME]

14 minutes ago, CKOwen said:

Enzymes don’t work for Celiac Disease though. This idea that people can just take an enzyme and it will make eating gluten okay needs to go away. Why risk your health on this? 

I just posted this for the sake of  others who posted that GliadinX has given them relief when they'd been accidentally "glutened."  My intent was not to imply that this is any kind of cure for celiac. I have not tried it myself yet but am hoping to do so. 

[CKOwen]

22 minutes ago, trents said:

You misunderstand what the purpose of GliadinX is and it's intended use. No one is saying that if you use GliadinX you can eat all the gluten you want. It is designed to provide some measure of protection against minor amounts of gluten such as you might get through cross contamination when eating out. And your statement, "enzymes don't work for celiac disease" is not a proven fact, though it may be your opinion. GliadinX seems to help some celiacs when used for it's intended purpose. This is largely anecdotal at this point but our administrator, Scott Adams, testifies that it works for him.

I don’t misunderstand the purpose of Gliadin X at all. While the use of enzymes is being studied as a way of helping to manage Celiac Disease, as of now, there are no enzymes that have been found effective for this use. None. The studies on these enzymes thus far show that they don’t survive the acid in your stomach and they don’t break down gluten in a way that would stop the immune response in people with Celiac Disease. I’m not trying to be a scold here but this is a serious disease and citing anecdotal usage is irresponsible and dangerous. There is a gulf between “seems to help” and “actually helps”. People come here for help and guidance and when there’s already so much misinformation out there about this disease it’s frustrating to see more of it here.

[CKOwen]

36 minutes ago, PME said:

I just posted this for the sake of  others who posted that GliadinX has given them relief when they'd been accidentally "glutened."  My intent was not to imply that this is any kind of cure for celiac. I have not tried it myself yet but am hoping to do so. 

I understand. My issue here is that people have this idea that it’s helping. Studies have shown that it doesn’t. We’ve all been accidentally glutened and it sucks. I wish there was something out there that actually worked. Hopefully there will be one day.

[Parent of celiac teen]

49 minutes ago, trents said:

You misunderstand what the purpose of GliadinX is and it's intended use. No one is saying that if you use GliadinX you can eat all the gluten you want. It is designed to provide some measure of protection against minor amounts of gluten such as you might get through cross contamination when eating out. And your statement, "enzymes don't work for celiac disease" is not a proven fact, though it may be your opinion. GliadinX seems to help some celiacs when used for it's intended purpose. This is largely anecdotal at this point but our administrator, Scott Adams, testifies that it works for him.

My daughter's  gastroenterologist said GliadinX is NOT for Celiac patients-only for gluten intolerant people. Gluten is a very tough protein and the Gliadin X does not break down the gluten before it reaches the small intestines which is where the damage to a celiac is done!  

[PME]

12 minutes ago, CKOwen said:

I understand. My issue here is that people have this idea that it’s helping. Studies have shown that it doesn’t. We’ve all been accidentally glutened and it sucks. I wish there was something out there that actually worked. Hopefully there will be one day.

Agreed. And I never interpreted people's claims that GliadinX "helps" to mean that it prevented or mitigated intestinal damage; only that it seemed to ease symptoms. It would be great if this could be stated explicitly somewhere...specifially what GliadinX does and does NOT do. 

[trents]

12 minutes ago, CKOwen said:

I understand. My issue here is that people have this idea that it’s helping. Studies have shown that it doesn’t. We’ve all been accidentally glutened and it sucks. I wish there was something out there that actually worked. Hopefully there will be one day.

There us currently a study being done on the effectiveness of GliaddinX's main active ingredient: https://clinicaltrials.gov/ct2/show/NCT04788797 . The study was put on the back burner due to the COVID overload of the healthcare system but is due to be complete in December of 2022.

docaz is the inventor of the product, a sponsor of this forum and an occasional participant. See his post from 1/11/22:

Perhaps we will have a more definitive answer about the effectiveness of this product next year.

[trents]

12 minutes ago, Parent of celiac teen said:

My daughter's  gastroenterologist said GliadinX is NOT for Celiac patients-only for gluten intolerant people. Gluten is a very tough protein and the Gliadin X does not break down the gluten before it reaches the small intestines which is where the damage to a celiac is done!  

If it doesn't break down the gluten protein then why would it benefit NCGS people?

[CKOwen]

16 minutes ago, trents said:

There us currently a study being done on the effectiveness of GliaddinX's main active ingredient: https://clinicaltrials.gov/ct2/show/NCT04788797 . The study was put on the back burner due to the COVID overload of the healthcare system but is due to be complete in December of 2022.

docaz is the inventor of the product, a sponsor of this forum and an occasional participant. See his post from 1/11/22:

Perhaps we will have a more definitive answer about the effectiveness of this product next year.

The use of the AN-PEP enzyme that Gliadin X touts has already been studied once before (way back in 2011) and was found to be ineffective at cutting gluten because it doesn’t survive the acid in the stomach. I can’t imagine that much of anything will change with that. But again, the use of enzymes continues to be studied as it should be. Anything that is actually proven to help would be a good thing. But we aren’t there yet. 

[Kate333]

4 hours ago, CKOwen said:

Enzymes don’t work for Celiac Disease though. This idea that people can just take an enzyme and it will make eating gluten okay needs to go away. Why risk your health on this? 

I--and my personal GI docs and other prominent GI docs--agree with you, so I will not "try it and see what happens". 

Personally, I feel like I have worked too hard and too long to FINALLY get my TTG gluten antibody test results down to a "normal" range of 13 (YAY!!) from a high of 224 at first diagnosis, so I am not about to consciously let down my guard even a little bit and risk cross-contamination in the wishful hope that I won't get terribly sick after "an accident" and undo this progress--even if I take a supplement marketed as "protective" first.   But then, my diagnosis and this pandemic have taught me to be SUPER-CAUTIOUS.  I have not returned to eating out and trusting restaurants who tout gluten-free menus, or to buying packaged, processed food labeled as "gluten-free" because I know that gluten-free diets can ironically make a person MORE sensitive/reactive to even minute gluten ingestion.   [And, yes, I still wear masks everywhere in public, crowded places, despite government decisions to drop the mask mandates for the same reason I don't try Gliadin-X or other touted celiac disease enzymes:  because I...just..don't..want...to..risk..getting...sick.  LOL]   Also, G damage to the small intestine can be subtle ("silent"), so even if one is fortunate enough to not get overtly sick after cross contamination while using an enzyme, that doesn't mean the gut wasn't damaged by it.   

That said, I also know that this website accepts paid advertising/funding from Gliadin-X.  My advice, as always, is to consult a GI specialist before considering doing anything other than adhering to a strict gluten-free product.    

[Scott Adams]

4 hours ago, CKOwen said:

I understand. My issue here is that people have this idea that it’s helping. Studies have shown that it doesn’t. We’ve all been accidentally glutened and it sucks. I wish there was something out there that actually worked. Hopefully there will be one day.

Please share any studies that show that it does not work. There have been multiple studies done on AN-PEP at this point, and all are linked to from their site:

https://www.gliadinx.com/publications

I've gone through each and they do support it breaking small amounts of gliadin down in the stomach.

[Parent of celiac teen]

3 hours ago, trents said:

If it doesn't break down the gluten protein then why would it benefit NCGS people?

I do not know why it is ok for people who are gluten intolerant. The dr. explained it but I honestly just dont remember. You could research and see if it is ok and why.

[Russ H]

3 hours ago, CKOwen said:

The use of the AN-PEP enzyme that Gliadin X touts has already been studied once before (way back in 2011) and was found to be ineffective at cutting gluten because it doesn’t survive the acid in the stomach. I can’t imagine that much of anything will change with that. But again, the use of enzymes continues to be studied as it should be. Anything that is actually proven to help would be a good thing. But we aren’t there yet. 

AN-PEP does seem to be active in the stomach and small intestine. In the study I saw, it cut by half the amount reaching the small intestine following a small dose of gluten. That is not enough for me to try using it - I think it is better to concentrate on avoiding gluten exposure. Here is brief nature article on it's gut activity:

https://www.nature.com/articles/ncpgasthep0645

[Scott Adams]

The other thing to keep in mind is that you can take 1-5 pills, or more, with no real side effects, other than more AN-PEP will break down more gliadin. Again, this does not in any way mean that you should use them to knowingly eat gluten, but the sad reality is that most restaurant food, even ones with gluten-free menus, has some contamination according to studies we've summarized on Celiac.com. As many as 1/3 cheat on their gluten-free diets regularly, and for those like me, who believe that travelling and eating out are too important to cut out of their lives, it does offer an option that may help (I can say that it has helped me).

The maker of GliadinX @docaz may have more points to make.

[docaz]

10 hours ago, CKOwen said:

I don’t misunderstand the purpose of Gliadin X at all. While the use of enzymes is being studied as a way of helping to manage Celiac Disease, as of now, there are no enzymes that have been found effective for this use. None. The studies on these enzymes thus far show that they don’t survive the acid in your stomach and they don’t break down gluten in a way that would stop the immune response in people with Celiac Disease. I’m not trying to be a scold here but this is a serious disease and citing anecdotal usage is irresponsible and dangerous. There is a gulf between “seems to help” and “actually helps”. People come here for help and guidance and when there’s already so much misinformation out there about this disease it’s frustrating to see more of it here.

Nobody questions the severity of the disease but please be so kind to read this post and check for yourself the information that is presented and I hope that it will be worth your time.

There is a tremendous amount of research that shows that AN-PEP (the active ingredient of GliadinX) withstands the stomach acidity. Even more so, it has the highest activity at pH 2-4 and is less active at a lower acidity. Specifically because of that, GliadinX contains a component that enhances the acidity to boost the efficacy even if taken with food that lessens the acidity. Enzymatic degradation of gluten with multiple enzyme formulations is actively researched at the Mayo Clinic and several other world class centers with products such as AN-PEP, Latiglutenase, KumaMax and Gluteguard. Here is a paper that proves that AN-PEP works best in an acidic environment and has the capability of breaking down the immunogenic component of gluten. It also explains how it can minimize the inflammatory reaction in the small intestine https://journals.physiology.org/doi/full/10.1152/ajpgi.00034.2006

Based on the promising existing studies there are multiple studies going on right now that are designed to further investigate the reduction of inflammatory markers in blood, urine and stool. Here is an example

https://clinicaltrials.gov/ct2/show/NCT04788797

Until a cure will be found, enzymatic degradation is the only available method with a lot of research behind it showing the ability to deal with cross-contamination. Not all enzymes work and for that reason it is important to understand which have catchy names and which one have been proven to break down gliadin. These are not intended to be careless but as an adjunct to gluten-free diet understanding that a 100% gluten-free diet does not exist and knowing very well that virtually everybody has experienced cross-contamination or accidental gluten exposure. 

[docaz]

10 hours ago, Parent of celiac teen said:

My daughter's  gastroenterologist said GliadinX is NOT for Celiac patients-only for gluten intolerant people. Gluten is a very tough protein and the Gliadin X does not break down the gluten before it reaches the small intestines which is where the damage to a celiac is done!  

Your GI could possibly not be aware of the many studies showing exactly how GliadinX (AN-PEP) breaks down the proline bindings of gliadin. Indeed, gliadin is a very tough protein because it has many proline bindings and the human body does not have the capability to break down these bindings. There are several enzymes that have the capability of breaking down these bindings including AN-PEP (GliadinX), Latiglutenase, Kumamax, Gluteguard and these are all actively researched at major centers such as the Mayo Clinic. 

I suggest that you speak with your GI again and print out these papers in preparation for the discussion

https://www.mdpi.com/2072-6643/12/7/2095/htm

https://www.researchgate.net/publication/6338053_Efficient_degradation_of_gluten_by_a_prolyl_endoprotease_in_a_gastrointestinal_model_Implications_for_coeliac_disease

https://journals.physiology.org/doi/full/10.1152/ajpgi.00034.2006

http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.611.8053&rep=rep1&type=pdf

[docaz]

6 hours ago, Russ314 said:

AN-PEP does seem to be active in the stomach and small intestine. In the study I saw, it cut by half the amount reaching the small intestine following a small dose of gluten. That is not enough for me to try using it - I think it is better to concentrate on avoiding gluten exposure. Here is brief nature article on it's gut activity:

https://www.nature.com/articles/ncpgasthep0645

You are absolutely right that it is important to concentrate on maintaining a gluten-free diet and GliadinX is not designed to change that. Even the most careful person will be in a situation that raises questions at a family event, in a social situation or at a restaurant that is not completely gluten-free but has gluten-free items on the menu. The only way around it is complete social isolation. The question is not if one should be careful or not. Of course, one should be careful but the question is if it is worth spending 50 cents for a product that has a large amount of promising research to add an additional layer helping to maintain a gluten-free diet in certain situations, that everybody encounters and one is not 100% sure.

[docaz]

7 hours ago, Kate333 said:

 

That said, I also know that this website accepts paid advertising/funding from Gliadin-X.  

There are a lot of comments suggesting that Scott from celiac.com promotes GliadinX just for the paid advertisement.  First of all, before GliadinX was allowed to be an advertiser, the data had to be presented because otherwise it would have never made it on the site. It so happened that Scott had in his family a situation of cross contamination in which GliadinX helped tremendously. Secondly, without going into details, neither Scott nor I (who developed GliadinX) are getting rich on this. For me, the motivation was to help two of my own children who have celiac disease and their numbers were sky high when they were diagnosed. The numbers went down on a gluten-free diet but much lower when GliadinX was added. I am fortunate to own a very lucrative biotech company and used my resources to help my own children but then decided to go further. The highest satisfaction that I can get from this is if GliadinX can provide a better lifestyle until a true cure is found and I would be delighted if GliadinX looses the reason for its existence not the least for my own children who are running around wherever they go with enzymes in their pockets. 

[Parent of celiac teen]

18 minutes ago, docaz said:

You are absolutely right that it is important to concentrate on maintaining a gluten-free diet and GliadinX is not designed to change that. Even the most careful person will be in a situation that raises questions at a family event, in a social situation or at a restaurant that is not completely gluten-free but has gluten-free items on the menu. The only way around it is complete social isolation. The question is not if one should be careful or not. Of course, one should be careful but the question is if it is worth spending 50 cents for a product that has a large amount of promising research to add an additional layer helping to maintain a gluten-free diet in certain situations, that everybody encounters and one is not 100% sure.

I think everyone needs to do whatever makes them comfortable. 😃 

33 minutes ago, docaz said:

Your GI could possibly not be aware of the many studies showing exactly how GliadinX (AN-PEP) breaks down the proline bindings of gliadin. Indeed, gliadin is a very tough protein because it has many proline bindings and the human body does not have the capability to break down these bindings. There are several enzymes that have the capability of breaking down these bindings including AN-PEP (GliadinX), Latiglutenase, Kumamax, Gluteguard and these are all actively researched at major centers such as the Mayo Clinic. 

I suggest that you speak with your GI again and print out these papers in preparation for the discussion

https://www.mdpi.com/2072-6643/12/7/2095/htm

https://www.researchgate.net/publication/6338053_Efficient_degradation_of_gluten_by_a_prolyl_endoprotease_in_a_gastrointestinal_model_Implications_for_coeliac_disease

https://journals.physiology.org/doi/full/10.1152/ajpgi.00034.2006

http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.611.8053&rep=rep1&type=pdf

Thank you for the resoonse and information

[Parent of celiac teen]

On 5/11/2022 at 10:36 AM, CKOwen said:

Enzymes don’t work for Celiac Disease though. This idea that people can just take an enzyme and it will make eating gluten okay needs to go away. Why risk your health on this? 

The reason a gluten intolerant person can take Giladin is because it breaks down some of the gluten and it helps alleviate the discomfort they get when ingesting  gluten. They suffer no damage from gluten, just extreme discomfort. I do not mean to minimize their discomfort! I just mean to say that they do not suffer the same health effects as a person with Celiacs. The reason a person with Celiacs should not take Giladin and think they can eat gluten is because the smallest amount of gluten that reaches  the small intestine can cause damage, symptoms or not, which leads to other health issues.  A person with Celiacs may take it if they think they have been accidentally  glutened to help reduce,possibly, the damage to their small intestine.  To date, and to the best of my knowledge, the only way to avoid health issues for a person with Celiacs is  to avoid gluten .  I agree with other posts who state that  it is just not worth it!

 

 

 

[docaz]

22 hours ago, Parent of celiac teen said:

The reason a gluten intolerant person can take Giladin is because it breaks down some of the gluten and it helps alleviate the discomfort they get when ingesting  gluten. They suffer no damage from gluten, just extreme discomfort. I do not mean to minimize their discomfort! I just mean to say that they do not suffer the same health effects as a person with Celiacs. The reason a person with Celiacs should not take Giladin and think they can eat gluten is because the smallest amount of gluten that reaches  the small intestine can cause damage, symptoms or not, which leads to other health issues.  A person with Celiacs may take it if they think they have been accidentally  glutened to help reduce,possibly, the damage to their small intestine.  To date, and to the best of my knowledge, the only way to avoid health issues for a person with Celiacs is  to avoid gluten .  I agree with other posts who state that  it is just not worth it!

 

 

 

It is very important to emphasize that nowhere is the product advertised for intentional gluten ingestion. This is done prominently and is not just a hidden footnote.  You are very correct that even the smallest amount of gluten (specifically the gliadin molecule) can cause damage in the small intestine. Your are also correct that avoiding gluten is the best way to manage celiac disease) GliadinX is designed add ad safety layer because all experts agree that a 100% gluten-free diet does not exist and a very famous "doggie bag" study and many others has shown that a very high percentage of people who think that they do not ingest gluten, the are in fact ingesting gluten. This has bee shown by examining the inflammatory markers in stool (longer term exposure) and urine (shorter term exposure). The active ingredient of GliadinX has been studied extensively and has shown that it can break down the gliadin molecule. One of the best studies has been done with a nasogastric-tube in which gluten and AN-PEP was introduced and samples taken from the small intestine showed that gliadin was broken down.  This is one of the original ones at the University of Leiden which is one of the oldest and most reputable Universities in Europe It shows that AN-PEP has the potential to prevent inflammation and not just symptoms  https://pubmed.ncbi.nlm.nih.gov/16690904/

This is a study that was done for European approval  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5638938/

Here is a summary of various research with AN-PEP (GliadinX has the highest concentration of AN-PEP)  https://www.metagenicsinstitute.com/wp-content/uploads/2018/07/MET2110-AN-PEP-Research-Review_MI.pdf

Everybody will be in a situation such as a family event, restaurant, social or work event where even if the food is gluten-free, contamination is not 100% excluded. One has the choice to always bring food along or not to eat. For many that is very hard to do and they take a chance (with gluten-free food, not the whole wheat pizza) and in that case, GliadinX helps ensuring the even small amounts of gliadin do not make it to the small intestine. 

[Parent of celiac teen]

14 hours ago, docaz said:

It is very important to emphasize that nowhere is the product advertised for intentional gluten ingestion. This is done prominently and is not just a hidden footnote.  You are very correct that even the smallest amount of gluten (specifically the gliadin molecule) can cause damage in the small intestine. Your are also correct that avoiding gluten is the best way to manage celiac disease) GliadinX is designed add ad safety layer because all experts agree that a 100% gluten-free diet does not exist and a very famous "doggie bag" study and many others has shown that a very high percentage of people who think that they do not ingest gluten, the are in fact ingesting gluten. This has bee shown by examining the inflammatory markers in stool (longer term exposure) and urine (shorter term exposure). The active ingredient of GliadinX has been studied extensively and has shown that it can break down the gliadin molecule. One of the best studies has been done with a nasogastric-tube in which gluten and AN-PEP was introduced and samples taken from the small intestine showed that gliadin was broken down.  This is one of the original ones at the University of Leiden which is one of the oldest and most reputable Universities in Europe It shows that AN-PEP has the potential to prevent inflammation and not just symptoms  https://pubmed.ncbi.nlm.nih.gov/16690904/

This is a study that was done for European approval  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5638938/

Here is a summary of various research with AN-PEP (GliadinX has the highest concentration of AN-PEP)  https://www.metagenicsinstitute.com/wp-content/uploads/2018/07/MET2110-AN-PEP-Research-Review_MI.pdf

Everybody will be in a situation such as a family event, restaurant, social or work event where even if the food is gluten-free, contamination is not 100% excluded. One has the choice to always bring food along or not to eat. For many that is very hard to do and they take a chance (with gluten-free food, not the whole wheat pizza) and in that case, GliadinX helps ensuring the even small amounts of gliadin do not make it to the small intestine. 

If , as you stated , "Gliadin X helps ensure that even small amounts of gliadin do not make it to the small intestine"  then this supposes that a person can eat gluten and take GliadinX and the gluten protein will be broken down and not reach the small intestine. I think everyone needs to make their own decisions and do their own resewrch on this. But I believe if the statement which I quoted from you were true then that would mean people can eat gluten with no worries. It is , according to everthing I have read, not true. Nothing, as of now , can break down gluten when ingested.  I think that is not a message that should be conveyed on this forum where people are looking for help with managing this disease. 

[docaz]

49 minutes ago, Parent of celiac teen said:

If , as you stated , "Gliadin X helps ensure that even small amounts of gliadin do not make it to the small intestine"  then this supposes that a person can eat gluten and take GliadinX and the gluten protein will be broken down and not reach the small intestine. I think everyone needs to make their own decisions and do their own resewrch on this. But I believe if the statement which I quoted from you were true then that would mean people can eat gluten with no worries. It is , according to everthing I have read, not true. Nothing, as of now , can break down gluten when ingested.  I think that is not a message that should be conveyed on this forum where people are looking for help with managing this disease. 

ABSOLUTELY NOT!! It means exactly what it says. Implying that this is designed to eat gluten freely is a baseless interpretation. The studies show that a small amount of gluten is digested but nowhere is that posted or advertised in conjunction with GliadinX. It is everywhere prominently posted that It is intended for possible cross-contamination and NOT for intentional gluten ingestion and that includes the mixed frier.

Reality is that everybody even if they worry, eats gluten knowingly or unknowingly. By telling people just keep doing what they are doing and maintain a gluten-free diet, is truly endangering them because almost 100% of people are exposed to gluten. I do not know what you read but the links that I posted are high quality research papers that clearly show that AN-PEP can break down gluten (and so do Latiglutenase by ImmunogenX, KumaMax by Takeda and Caricain by Gluteguard which are not on the US market yet) By adding GliadinX they they are adding a safety component. Advising against GliadinX is not protecting anybody against a "bad product" but truly removing an additional precaution and endangering people and encouraging them to continue being exposed to gluten. 

I actually do not understand why you would not celebrate the fact that there is something that allow to take at least some of the stress of dealing with gluten. I am not sure if you or your teen is gluten-free but I do have teens who are gluten-free and the social implications are enormous and reality is that they are constantly tested. Giving them a little extra wiggle room not to bring their own food wherever they go is a big deal. By posting such negativity, and ignoring the research that is presented you are not protecting but endangering because you basically ensure that they will be exposed to gluten. 

It is very simple, if you go to a restaurant and eat from the gluten-free menu or you go to grandma's holiday dinner you are taking a chance. You can choose not eat and bring your own food but that's not realistic for many. If you eat in such situations, you will for sure occasionally deal with cross-contamination. Now you have a choice to add a 50 cents GliadinX capsule for extra protection or not. If you do not, you will be for sure exposed to occasionally to gluten and if you do take a capsule all research shows that there is a good chance that it can be helpful.