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Alaina

Help with staying gluten free

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Hello,

I have been gluten free for about four years due to celiac disease but struggle with staying gluten free. I know that I could get cancer or other serious illnesses. I live in a house of gluten eaters so I am surrounded by gluten but I can not move or get away from it due to financial issues. I am also in college and work a lot so I always go for convince over health. So I guess I am hoping to get advise on how to stay on a gluten free diet. I am desperate and could use any help. 

Thank you,

A

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NO judgement here. I’ve been in your shoes and Its. SO. Hard.

My advice would be to surround yourself with gluten free snacks at all times. Try to have some salty and some sweet to curb any craving. Fruit is great and often cheaper than gluten-free products. whenever you’re feeling tempted, pick up one of your own treats from your bag. Not sure if you’re living with roommates or family, but if it’s roommates maybe let them try some of your snacks (not a lot—gluten-free snacks are expensive!) My friends love eating cheese and crackers and they loved my gluten-free crackers so much they switched to them completely and it made my life a little easier. If it’s family, i would ask them to keep gluten out of the house until you can find your own place.

I really feel you on this! I was diagnosed at 12 and I struggled to stick to gluten free much more than it seems older adults seemed to be able to. I don’t want to scare you, but I did end up getting horribly sick in college when I finally pushed it too far. I “broke my body” junior year and started having celiac symptoms I never had before like vomiting and skin rashes. I still get these symptoms now:/ during accidental glutenings and I really wish I had been more careful. I don’t cheat any more AT ALL so it is possible and necessary to get there :)

Best wishes!

 

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On 5/30/2020 at 12:27 AM, Alaina said:

Hello,

I have been gluten free for about four years due to celiac disease but struggle with staying gluten free. I know that I could get cancer or other serious illnesses. I live in a house of gluten eaters so I am surrounded by gluten but I can not move or get away from it due to financial issues. I am also in college and work a lot so I always go for convince over health. So I guess I am hoping to get advise on how to stay on a gluten free diet. I am desperate and could use any help. 

Thank you,

A

I am sorry you have to deal with that. I live alone. But i for some reason got paranoid about certain things that i know is gluten. Like the reptile sticks for my turtles and wheat bread for the opossums. When i get near those i put on a mask.  lol  I don't even want to be breathing it. I also have a undiagnosed condition where my nose is probably a million more times more sensitive than a normal human.  Are you having a lot of symptoms? 

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Since you live in a house with gluten eaters you may want to look into gluten digesting enzymes like GliadinX (full disclosure they are a sponsor of this site). In many studies they have been shown to break down small amounts of Gluten, for example the amount you might get with cross-contamination. This might mitigate the problems of living with people who are preparing Gluten food along side your gluten-free food.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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On 5/30/2020 at 12:27 AM, Alaina said:

Hello,

I have been gluten free for about four years due to celiac disease but struggle with staying gluten free. I know that I could get cancer or other serious illnesses. I live in a house of gluten eaters so I am surrounded by gluten but I can not move or get away from it due to financial issues. I am also in college and work a lot so I always go for convince over health. So I guess I am hoping to get advise on how to stay on a gluten free diet. I am desperate and could use any help. 

Thank you,

A

Evidently you don't get as sick as I do. If you knew one little "cheat" would cause at least a week of severe nausea and diarrhea you would be much more careful.

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On 5/31/2020 at 2:02 PM, Scott Adams said:

Since you live in a house with gluten eaters you may want to look into gluten digesting enzymes like GliadinX (full disclosure they are a sponsor of this site). In many studies they have been shown to break down small amounts of Gluten, for example the amount you might get with cross-contamination. This might mitigate the problems of living with people who are preparing Gluten food along side your gluten-free food.

This is one of the latest independent study that shows that GliadinX completely breaks down the damaging component of gluten contaminants and it does it very fast in the acidic environment of the stomach. In an alkaline environment, it still worked but it was slower but that's not clinically relevant because the stomach environment is acidic. For disclosure, I am involved with GliadinX but I did not sponsor in any way that study and I was not even aware of it until it showed up on a web-search. The study was actually sponsored by a competitive product but the author was honest in his reporting and disclosed all products that were effective.

Relative rates of gluten digestion by nine commercial dietary digestive supplements
Greg Tanner1, Angela Juhasz2, Christakis Florides3, Michelle Colgrave2
1The University of Melbourne, VIC, Australia, 2Edith Cowan University, WA, Australia, 3Murdoch University, WA, Australia
Nine commercial gluten digesting protease preparations were compared: 1 Gluteguard, 2 GlutenBlock, 3 GliadinX, 4 GlutnGo, 5 GlutenRescue, 6 Eat E_Z Gluten+, 7 Glutenease, 8 Glutezyme, and 9 Gluten Digest. The rate of digestion of pepsin/ trypsin treated gluten, at pH 3.5 (to mimic stomach digestion) or pH 7 (small intestine digestion) was measured by Ridascreen and Gluten‐Tec competitive ELISA. Ridascreen (pH 7), showed preparation 1 was the fastest‐acting of the nine preparations, more than twice as fast as the next fastest preparations, 5, 6, 7 and 8. Ridascreen (pH 7) of preparations 2, 3 and 4 showed little activity, but Gluten‐Tec identified low activity levels. Ridascreen (pH 3.5), showed preparation 1 acted more than twice as fast as the next fastest preparations 2 and 3 but Gluten‐Tec (pH 3.5) showed preparations 2 and 3 were over two times faster than enzyme 1. The faster‐acting enzyme preparations may be more efficient at digesting immuno‐stimulatory gluten peptide fragments. MALDI TOFF MSMS was used to characterise the cleavage specificity of the four most active proteases. Preparations 1, 2, 3, 4 cleaved on the C‐ and N‐terminal side of glutamine and proline residues. None of the immuno‐toxic alpha 33‐mer epitopes (PFPQPQLPY, PYPQPQLPY and PQPQLPYPQ) were detected after digestion with enzymes 1, 2, 3 or 4. Preparation 1 most rapidly digested the key immuno‐reactive gluten epitopes ‐ identified by the R5 antibody in the Codex approved competitive Ridascreen ELISA method associated with symptoms and pathology of celiac disease and gluten sensitivities.
Contact author: Greg Tanner – read_right@grapevine.com.au

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11 hours ago, docaz said:

This is one of the latest independent study that shows that GliadinX completely breaks down the damaging component of gluten contaminants and it does it very fast in the acidic environment of the stomach. In an alkaline environment, it still worked but it was slower but that's not clinically relevant because the stomach environment is acidic. For disclosure, I am involved with GliadinX but I did not sponsor in any way that study and I was not even aware of it until it showed up on a web-search. The study was actually sponsored by a competitive product but the author was honest in his reporting and disclosed all products that were effective.

Relative rates of gluten digestion by nine commercial dietary digestive supplements
Greg Tanner1, Angela Juhasz2, Christakis Florides3, Michelle Colgrave2
1The University of Melbourne, VIC, Australia, 2Edith Cowan University, WA, Australia, 3Murdoch University, WA, Australia
Nine commercial gluten digesting protease preparations were compared: 1 Gluteguard, 2 GlutenBlock, 3 GliadinX, 4 GlutnGo, 5 GlutenRescue, 6 Eat E_Z Gluten+, 7 Glutenease, 8 Glutezyme, and 9 Gluten Digest. The rate of digestion of pepsin/ trypsin treated gluten, at pH 3.5 (to mimic stomach digestion) or pH 7 (small intestine digestion) was measured by Ridascreen and Gluten‐Tec competitive ELISA. Ridascreen (pH 7), showed preparation 1 was the fastest‐acting of the nine preparations, more than twice as fast as the next fastest preparations, 5, 6, 7 and 8. Ridascreen (pH 7) of preparations 2, 3 and 4 showed little activity, but Gluten‐Tec identified low activity levels. Ridascreen (pH 3.5), showed preparation 1 acted more than twice as fast as the next fastest preparations 2 and 3 but Gluten‐Tec (pH 3.5) showed preparations 2 and 3 were over two times faster than enzyme 1. The faster‐acting enzyme preparations may be more efficient at digesting immuno‐stimulatory gluten peptide fragments. MALDI TOFF MSMS was used to characterise the cleavage specificity of the four most active proteases. Preparations 1, 2, 3, 4 cleaved on the C‐ and N‐terminal side of glutamine and proline residues. None of the immuno‐toxic alpha 33‐mer epitopes (PFPQPQLPY, PYPQPQLPY and PQPQLPYPQ) were detected after digestion with enzymes 1, 2, 3 or 4. Preparation 1 most rapidly digested the key immuno‐reactive gluten epitopes ‐ identified by the R5 antibody in the Codex approved competitive Ridascreen ELISA method associated with symptoms and pathology of celiac disease and gluten sensitivities.
Contact author: Greg Tanner – read_right@grapevine.com.au

 

Where was this study published?  Can you please provide a link instead of an email address (which seems dubious).  I have determined that the report you cut and pasted  indicates that this was done in a lab, on not on humans.  Please correct me if I am wrong.   

The only known treatment for celiac disease is a gluten free diet.  

I found a study (Gastroenterology publication) that  looked at various supplements designed to breakdown gluten in the stomach and concluded that they were not safe for celiacs.  While they did not test your product,  they did mention a comparable product containing AN-PEP enzymes:

While Tolerase G effectively reduced the amount of consumed gluten that was exposed to the duodenum in a clinical study, it did not completely degrade the gluten.9 Therefore, it is not an effective treatment for celiac disease, as no safe concentration of gluten in the duodenum has been determined, and the same study even states, ‘AN-PEP is not intended to treat or prevent coeliac disease’.9 Tolerase G, being a dietary supplement, is also not FDA regulated and therefore has the same regulation concerns as the supplements evaluated in this study.

With the potential hazards and lack of evidence of efficacy of the glutenase products we investigated, it appears entirely inadvisable for patients with celiac disease to use the products. Rather, it remains that the only valid treatment option presently available for celiac disease is lifelong adherence to the GFD.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5424869/

Granted you are not promoting  Tolerase G, but your product, Gliadin X, which contains the same AN-PEP enzymes (comparable).  

It is unethical, in my opinion, that you come on to the forum section of Celiac.com to promote your product.  While many members on this forum offer tips and recommendations based on their personal experiences, they are not profiting from it.  I stand by celiac research centers and association’s current recommendations: 

https://nationalceliac.org/celiac-disease-questions/gliadinx-product-digestive-enzyme-supplement/

Some day,  we may know if products like GliadinX work each and every time a celiac consumes gluten.  Until then, Maybe we should  wait for the research that proves the efficacy and safety of this AN-PEP supplement for those who have celiac disease.  

 


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I find it pretty cavalier that anyone would push a product like  GliadinX.  

 

It may kill some of the gluten but it doesn’t kill all of it! Which still means that your autoimmune disease is activated! Which in turn damages your body. With or without physical symptoms. This is Celiacs.com. I assumed the advice would be for people with celiacs! The GliadinX clearly states it is. Not for people with celiacs. 

 

I highly doubt this this comment will make it through. This website has been my bible throughout this roller coaster diagnosis. 

 

Im very disappointed. Shame on you. 

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27 minutes ago, Kellyjall said:

I find it pretty cavalier that anyone would push a product like  GliadinX.  

 

It may kill some of the gluten but it doesn’t kill all of it! Which still means that your autoimmune disease is activated! Which in turn damages your body. With or without physical symptoms. This is Celiacs.com. I assumed the advice would be for people with celiacs! The GliadinX clearly states it is. Not for people with celiacs. 

 

I highly doubt this this comment will make it through. This website has been my bible throughout this roller coaster diagnosis. 

 

Im very disappointed. Shame on you. 

I would say shame on you for making statements like this because you completely ignore the fact that all experts agree that a gluten free diet without contamination is not impossible.

 

38 minutes ago, cyclinglady said:

 

Where was this study published?  Can you please provide a link instead of an email address (which seems dubious).  I have determined that the report you cut and pasted  indicates that this was done in a lab, on not on humans.  Please correct me if I am wrong.   

The only known treatment for celiac disease is a gluten free diet.  

I found a study (Gastroenterology publication) that  looked at various supplements designed to breakdown gluten in the stomach and concluded that they were not safe for celiacs.  While they did not test your product,  they did mention a comparable product containing AN-PEP enzymes:

While Tolerase G effectively reduced the amount of consumed gluten that was exposed to the duodenum in a clinical study, it did not completely degrade the gluten.9 Therefore, it is not an effective treatment for celiac disease, as no safe concentration of gluten in the duodenum has been determined, and the same study even states, ‘AN-PEP is not intended to treat or prevent coeliac disease’.9 Tolerase G, being a dietary supplement, is also not FDA regulated and therefore has the same regulation concerns as the supplements evaluated in this study.

With the potential hazards and lack of evidence of efficacy of the glutenase products we investigated, it appears entirely inadvisable for patients with celiac disease to use the products. Rather, it remains that the only valid treatment option presently available for celiac disease is lifelong adherence to the GFD.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5424869/

Granted you are not promoting  Tolerase G, but your product, Gliadin X, which contains the same AN-PEP enzymes (comparable).  

It is unethical, in my opinion, that you come on to the forum section of Celiac.com to promote your product.  While many members on this forum offer tips and recommendations based on their personal experiences, they are not profiting from it.  I stand by celiac research centers and association’s current recommendations: 

https://nationalceliac.org/celiac-disease-questions/gliadinx-product-digestive-enzyme-supplement/

Some day,  we may know if products like GliadinX work each and every time a celiac consumes gluten.  Until then, Maybe we should  wait for the research that proves the efficacy and safety of this AN-PEP supplement for those who have celiac disease.  

 

The study was a poster session by a very reputable researcher at the University of Melbourne. Indeed it was a laboratory study but below are clinical studies. AN-PEP is NOT intended to replace a gluten free diet but works exactly like your car insurance in case of an accident. Experts agree that a completely gluten-free diet with ever being contaminated DOES NOT EXIST. Everybody gets contaminated and we do not know when and with what. When you go to a family event out of your house, can you 100% guarantee that you will not ingest gluten? On the contrary, it is almost 100% sure that at it will happen . AN-PEP does not treat, prevent or modify celiac disease but it breaks down the gluten before it hits the small intestine.

Even this study shows that it reduces gluten. Would you not want to reduce the gluten even if it is not completely eliminated? Would you like a lot of gluten or a little gluten when you get contaminated and no gluten is not the option? 

I suggest you look at these studies also:

https://onlinelibrary.wiley.com/doi/epdf/10.1111/apt.13266

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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3793137/

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

https://pubmed.ncbi.nlm.nih.gov/28644353/#:~:text=Extraintestinal symptoms included abnormal liver,puberty%2C osteoporosis%2C and infertility.

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

https://17fwxf1trr45xut7r3i2d4ya-wpengine.netdna-ssl.com/wp-content/uploads/2018/07/MET2110-AN-PEP-Research-Review_MI.pdf

 

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38 minutes ago, Kellyjall said:

I find it pretty cavalier that anyone would push a product like  GliadinX.  

 

It may kill some of the gluten but it doesn’t kill all of it! Which still means that your autoimmune disease is activated! Which in turn damages your body. With or without physical symptoms. This is Celiacs.com. I assumed the advice would be for people with celiacs! The GliadinX clearly states it is. Not for people with celiacs. 

 

I highly doubt this this comment will make it through. This website has been my bible throughout this roller coaster diagnosis. 

 

Im very disappointed. Shame on you. 

So not everyone can, or wants to, prepare all the meals they'll eat for the rest of their lives at home using only whole foods and plain, simple ingredients. Some people like, or need, to eat out, where cross-contamination is common. This supplement is not marketed in a way that encourages cheating on the gluten-free diet, but is marketed as an option for those who don't always have full control over their diets, for example when eating out, at a friend's house, office party, etc. 

~25% of people with celiac disease report that they cheat on their diets regularly. 

As mentioned, most people get gluten in their diets, even when they believe they have been 100% gluten-free, and this study indicates that up to 90% of people test positive for gluten ingestion over time:

If you actually take the time to look at the studies posted you will see that this supplement can mitigate small amounts of cross-contamination, so I see no shame in having this choice. You can take it or leave it.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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24 minutes ago, Kellyjall said:

I find it pretty cavalier that anyone would push a product like  GliadinX.  

 

It may kill some of the gluten but it doesn’t kill all of it! Which still means that your autoimmune disease is activated! Which in turn damages your body. With or without physical symptoms. This is Celiacs.com. I assumed the advice would be for people with celiacs! The GliadinX clearly states it is. Not for people with celiacs. 

 

I highly doubt this this comment will make it through. This website has been my bible throughout this roller coaster diagnosis. 

 

Im very disappointed. Shame on you. 

I hope you have a chance to read the publications that I posted above and I hope that you will realize that this is not about pushing a product but acknowledging that a 100% gluten-free diet does not exist and there is something that is researched in clinical and laboratory studies and has shown over and over again that it breaks down especially the alpha 33-mer epitopes of gliadin which is causing damage in celiacs. It does that by breaking down the proline bindings which the body can not do.   Of course, GliadinX can not treat or prevent of modify the autoimmune response of celiac disease because it has not anti-inflammatory or any other system function but it helps maintaining a gluten-free diet by breaking down contaminants. It is for sure NOT intended to cheat on a gluten-free diet but to help maintaining it for example in social setting when one is not sure. Not everybody is comfortable pulling out their own food out of a bag during a business meeting at a restaurant or when grandma cooked at at family event and she forgot that soy sauce contains gluten. How about going on vacation in a foreign country? Some people choose to forgo all these activities to avoid all risk but this has an impact on entire families and they try desperately to live a somehow normal life. 

On a different note, my own children had a very hard 18 months before we introduced AN-PEP in our house and now about 7 years later, the are still so happy to know that they can go to social events with a lot less fear of contamination and their blood levels have stayed perfect. I am not ashamed but I am a very, very happy father that I was able to help my children and by extension the entire family. My hope that others will also live a life with less anxiety. By the way, the recent topic of the University of Chicago Celiac center was the tremendous impact of celiac disease on mental health. 

I am also not ashamed but I am grateful that I was able to introduce a program to offer GliadinX for $1 for people struggling during this time of crisis because I am fully aware that many families who are suffering financially because of the pandemic and in addition have to purchase more expensive gluten-free food are double hit. AN-PEP is a very expensive enzyme and this is not some gimmick or marketing scheme but the company relies on the honesty of the customers and I hope that we can finance this program for as long as the pandemic lasts and maybe beyond.  

 

 

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@cyclinglady As a moderator you know that we've always allowed companies to come here to defend their products against criticism, which is exactly what @docaz was doing here. There is nothing unethical about this, and it doesn't violate our board's rules against self promotion. He's responding to criticism of his product, which we've always allowed.

Quote

It is unethical, in my opinion, that you come on to the forum section of Celiac.com to promote your product.  While many members on this forum offer tips and recommendations based on their personal experiences, they are not profiting from it.  I stand by celiac research centers and association’s current recommendations: 

https://nationalceliac.org/celiac-disease-questions/gliadinx-product-digestive-enzyme-supplement/

The link you keep posting totally ignores several other studies on AN-PEP, even ones that show that AN-PEP does indeed prevent the T cell response in those sensitive to gluten: "AN-PEP rapidly breaks down gluten peptides and intact gluten proteins, helps prevent gluten peptides from stimulating T cells, and has been verified to safely break down gluten in clinical studies."

Also, their complaint is that in a double blind study that too many in the placebo celiac group, that is the celiacs who were eating gluten but not getting AN-PEP, dropped out of the study...is this a surprise?:

  • CONCLUSION: AN-PEP appears to be well tolerated. However, the primary endpoint was not met due to lack of clinical deterioration upon placebo, impeding an effect of AN-PEP.

If a gluten-free diet worked people would not be seeking out products like this. Unfortunately the GFD doesn't work for many people, and research has shown this over and over. Products labelled "gluten-free" are sometimes found to contain gluten. Restaurants with "gluten-free" menus often serve food that is contaminated with gluten. Family members who cook for celiacs make mistakes. Taking a tablet or two before I eat outside my house has helped me, not hurt me.


Scott Adams

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Founder Celiac.com

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5 hours ago, cyclinglady said:

 

Where was this study published?  Can you please provide a link instead of an email address (which seems dubious).  I have determined that the report you cut and pasted  indicates that this was done in a lab, on not on humans.  Please correct me if I am wrong.   

The only known treatment for celiac disease is a gluten free diet.  

I found a study (Gastroenterology publication) that  looked at various supplements designed to breakdown gluten in the stomach and concluded that they were not safe for celiacs.  While they did not test your product,  they did mention a comparable product containing AN-PEP enzymes:

While Tolerase G effectively reduced the amount of consumed gluten that was exposed to the duodenum in a clinical study, it did not completely degrade the gluten.9 Therefore, it is not an effective treatment for celiac disease, as no safe concentration of gluten in the duodenum has been determined, and the same study even states, ‘AN-PEP is not intended to treat or prevent coeliac disease’.9 Tolerase G, being a dietary supplement, is also not FDA regulated and therefore has the same regulation concerns as the supplements evaluated in this study.

With the potential hazards and lack of evidence of efficacy of the glutenase products we investigated, it appears entirely inadvisable for patients with celiac disease to use the products. Rather, it remains that the only valid treatment option presently available for celiac disease is lifelong adherence to the GFD.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5424869/

Granted you are not promoting  Tolerase G, but your product, Gliadin X, which contains the same AN-PEP enzymes (comparable).  

It is unethical, in my opinion, that you come on to the forum section of Celiac.com to promote your product.  While many members on this forum offer tips and recommendations based on their personal experiences, they are not profiting from it.  I stand by celiac research centers and association’s current recommendations: 

https://nationalceliac.org/celiac-disease-questions/gliadinx-product-digestive-enzyme-supplement/

Some day,  we may know if products like GliadinX work each and every time a celiac consumes gluten.  Until then, Maybe we should  wait for the research that proves the efficacy and safety of this AN-PEP supplement for those who have celiac disease.  

 

I am sure that your statement are meant very well but I am not sure if you read the study that you posted. Here are two important statements

The authors agree that there are laboratory and human studies with promising results and they also agree that at the time of the study they did not evaluate AN-PEP.

No serious scientific discussion can be based on a publication that admits not evaluating the product in question. 

You are obviously very passionate but I think that you are in fact not helping but actually hurting. If you read the title of the post, it come from someone who tries everything possible to stay gluten-free and can not.

We have something NOW available that has proven to help.

Your posts actually can hurt someone physically and emotionally!!

 

Tolerase G, the AN-PEP-based supplement, was not evaluated in this study because it was not found via the search methods used. This is likely a result of the time at which the searches were conducted, the search terms used, and the Google search algorithm. Tolerase G became commercially available in June,

 

Tolerase G, a commercially available dietary supplement sold by DSM (Kaiseraugst, Switzerland) that contains Aspergillus niger derived prolyl endoprotease (AN-PEP), has had very promising in vitro, ex vivo, and in vitro initial results.8,9

 

 

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you might want to keep your own dishes and wash them separately. as for any gluten enzymes that are marketed, they don't work. 

one thing you can try is an ascorbate cleanse, which is where you drink lots of water, take a ridiculous amount of vitamin C (like 1 gram per hour). drinking lots of water in general will flush your system, the excess vitamin C will draw it into your intestines. make sure you don't do this at work, because it might make you crap your pants. 

I also read some offshoot article that vitamin C deficiency has been making people less resistant to allergens, I wouldn't put too much faith in it but if you aren't eating vegetables enough try it out

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