Pizza shop really safe?

[Fenrir]

3 minutes ago, docaz said:

This discussion points out to me that most likely there will be two types of restaurants emerging. One type that will be completely gluten-free and one type that will serve gluten and taking as much precautions as it makes financial sense given the high cost. Of course even under the most careful circumstances, mistakes will happen in particular since restaurant workers have a high turnover and are not exactly the highest trained and paid people. Consumers will then have to choose if these precautions are good enough or not. I think that it is unreasonable to hold all restaurants to the strictest standards because that would become cost-prohibitive for some places and from what I understand from friends of mine in the industry, the profit margin is not that high in many places. 

There will never be wide spread truly gluten-free restaurants. 

There are literally zero gluten-free restaurants with in an hour of where I live. Unless you live in an urban area there are probably zero or few gluten-free restaurants available. So unless you want to never go out to eat and never be able to share a dine out experience with friends or family you are going to have to eat at places that could possibly have cross contamination issues. 

I think you do your best to go to the most celiac friendly places and there may be some you simply can't do. Generally speaking traditional Chinese and Mexican places are almost for sure not good for celiacs (at least ones anywhere near me). Mostly because they are small family run places that have no awareness of celiac disease because people of their cultures largely don't have problems with gluten.  It seems that East Indians, Caucasians and Middle Eastern folks are the most likely to have celiac disease. Asian and Hispanic folks are least likely. Seems like Caucasians of Northern European ancestry and Indians from Northern India are have the highest rates. 

I think for some ethnic foods it's always going to be more difficult to find gluten-free options. Bottom line is there are very, very few places you can go and eat without some risk of cross contamination. It's either you need to not eat out or understand you will have to take some risks but you can minimize those risks and you can use things like GliadinX to lower the risk even more.  

[jobwabe]

47 minutes ago, Fenrir said:

There will never be wide spread truly gluten-free restaurants. 

There are literally zero gluten-free restaurants with in an hour of where I live. Unless you live in an urban area there are probably zero or few gluten-free restaurants available. So unless you want to never go out to eat and never be able to share a dine out experience with friends or family you are going to have to eat at places that could possibly have cross contamination issues. 

I think you do your best to go to the most celiac friendly places and there may be some you simply can't do. Generally speaking traditional Chinese and Mexican places are almost for sure not good for celiacs (at least ones anywhere near me). Mostly because they are small family run places that have no awareness of celiac disease because people of their cultures largely don't have problems with gluten.  It seems that East Indians, Caucasians and Middle Eastern folks are the most likely to have celiac disease. Asian and Hispanic folks are least likely. Seems like Caucasians of Northern European ancestry and Indians from Northern India are have the highest rates. 

I think for some ethnic foods it's always going to be more difficult to find gluten-free options. Bottom line is there are very, very few places you can go and eat without some risk of cross contamination. It's either you need to not eat out or understand you will have to take some risks but you can minimize those risks and you can use things like GliadinX to lower the risk even more.  

Very well said!!!  I'm in complete agreement.  And have just recently ordered GliadinX.  If it proves worthy to it's claim then I will be de-lighted as there are only three restaurants in my city that are truly gluten free and therefore safe to me.  Those are Chipotle Grill, In and Out Burger, and P F Chiang's.  The owners of these chains, I believe have personal acquaintance  with Celiac and can be trusted. But even there I stress the importance to my server.  Since I almost lost my life from my then ignorance of my dietary requirements I have since known that indeed I cannot socially attend meals out at friends' or at other restaurants unless they understand that I would bring my own meal.  This is a reality for Celiacs but unfortunately most don't know it.  The only reason I know was that I was enlightened by a new Celiac friend.  He has one of those immaculate minds and had studied to become a Physician but left the medical school upon gaining the knowledge of big pharm's grip on modern medicine.  He has a library of every medical study concerned with Celiac Sprue and the complete ability to understand all of it.  He is a Celiac himself as well as his wife and all his grown kids, one of which is a practicing Physician.  He says there is only 2 Dr.s in the Western United States who he would trust in the matter of Celiac.  One of which is Dr. Fine who operates a Gastrono Institute in Texas-forgot the name.  My friend communicates with Dr Fine personally as well.   Now the last Gastro Dr I visited admitted to me, when I gave him some Celiac medical study reports the subject of which he wasn't familiar, "Jobwabe I'm just a butt Dr."  I liked him.  He was honest on his limitations.  I construed from these events that Celiacs just cannot depend on these Drs.  I had, but almost died because of my reliance on them.  So while all the Celiac.com bloggers have great intentions and can certainly  be helpful we should be careful to remember their limitations.  Thanks for your most excellent and helpful reply!

[jobwabe]

15 hours ago, RMJ said:

The California Pizza Kitchen procedures have been evaluated and the pizzas tested by the certifying organization.  Pizzas have also been tested by the Gluten Free Watchdog.  If any customer feels “violated” they can report it not just to the restaurant but also to the certifying organization (GIG) who takes complaints very seriously (I had to complain once about a different type of restaurant that they certify).

If you’re not comfortable with that, don’t eat there.

Excellent information.  Very helpful.  Thanks

[Fenrir]

Most celiacs wouldn't consider  Chipotle Grill, In and Out Burger, and P F Chiang's as truly gluten free. Chipotle often have employees that don't change gloves between touching tortillas and are dipping hands into containers of ingredients. In and Out Burger, I'm not sure on but if they don't have friers dedicated to french fries (don't also fry breaded items in the same grease) the fries aren't safe and there is a chance to get exposed, same with PF Chiang. 

I got glutened pretty good at PF Chiangs when I first started eating gluten-free. 

 

Not saying you shouldn't ever eat at these places but if you are one of the folks can only eat 100% gluten-free places these places are a risk for cross contamination. 

[docaz]

4 hours ago, Fenrir said:

There will never be wide spread truly gluten-free restaurants. 

There are literally zero gluten-free restaurants with in an hour of where I live. Unless you live in an urban area there are probably zero or few gluten-free restaurants available. So unless you want to never go out to eat and never be able to share a dine out experience with friends or family you are going to have to eat at places that could possibly have cross contamination issues. 

I think you do your best to go to the most celiac friendly places and there may be some you simply can't do. Generally speaking traditional Chinese and Mexican places are almost for sure not good for celiacs (at least ones anywhere near me). Mostly because they are small family run places that have no awareness of celiac disease because people of their cultures largely don't have problems with gluten.  It seems that East Indians, Caucasians and Middle Eastern folks are the most likely to have celiac disease. Asian and Hispanic folks are least likely. Seems like Caucasians of Northern European ancestry and Indians from Northern India are have the highest rates. 

I think for some ethnic foods it's always going to be more difficult to find gluten-free options. Bottom line is there are very, very few places you can go and eat without some risk of cross contamination. It's either you need to not eat out or understand you will have to take some risks but you can minimize those risks and you can use things like GliadinX to lower the risk even more.  

I do in fact live in an urban area and there are many more choices. I thought that the gluten-free awareness has reached a high level  and that most places would have pure gluten-free restaurants (at least in the US) but I guess, I am wrong.

Obviously, I think that GliadinX is of great help but many pople who do not read the studies supporting it are skeptical. It also does not help that some people who have big online followings are posting negative comments but without ever mentioning any studies. Their reasoning is that it might encourage people to cheat and these people have to be protected but people are cheating anyway. The fact that Nevaxx did not pan out is unfortunate so we have to live for now with what we have. 

[Fenrir]

39 minutes ago, docaz said:

I do in fact live in an urban area and there are many more choices. I thought that the gluten-free awareness has reached a high level  and that most places would have pure gluten-free restaurants (at least in the US) but I guess, I am wrong.

Obviously, I think that GliadinX is of great help but many pople who do not read the studies supporting it are skeptical. It also does not help that some people who have big online followings are posting negative comments but without ever mentioning any studies. Their reasoning is that it might encourage people to cheat and these people have to be protected but people are cheating anyway. The fact that Nevaxx did not pan out is unfortunate so we have to live for now with what we have. 

Yes, realistically, there are about 4 places in our town that I eat at but none of them are truly gluten-free. They are places that have items on the menu that are made of gluten-free ingredients but there is a risk for cross contamination. I've worked with the restaurants to give them advice on how to make their process more celiac friendly. 

#1- When someone states celiac or gluten sensitive, clean the area of the grill used to cook their items. 

#2- Cooks should wash hands and change gloves before handling gluten-free items. 

#3- where possible as separate station should be used.

#4- educated them on if they have multiple fryers they should just dedicate one to french fries, that way they can offer gluten-free french fries. 

#5- Suggested cases where they could us corn starch to make food instead of flour and it would have minimal impact of flavors. 

Not all of them took the advise but some did and while they may not be truly gluten-free they are doing what they can to minimize exposure.  

[jobwabe]

19 hours ago, Fenrir said:

Yes, realistically, there are about 4 places in our town that I eat at but none of them are truly gluten-free. They are places that have items on the menu that are made of gluten-free ingredients but there is a risk for cross contamination. I've worked with the restaurants to give them advice on how to make their process more celiac friendly. 

#1- When someone states celiac or gluten sensitive, clean the area of the grill used to cook their items. 

#2- Cooks should wash hands and change gloves before handling gluten-free items. 

#3- where possible as separate station should be used.

#4- educated them on if they have multiple fryers they should just dedicate one to french fries, that way they can offer gluten-free french fries. 

#5- Suggested cases where they could us corn starch to make food instead of flour and it would have minimal impact of flavors. 

Not all of them took the advise but some did and while they may not be truly gluten-free they are doing what they can to minimize exposure.  

Thank you for your time in posting.  I have come to wonder if food processors have now come to the conclusion that the FDA will not become involved with a "gluten free" product complaint even though it has been legislated that they are to enforce.  I have had two violations in the last year's time, both being labeled "gluten free".  I registered an official complaint with the FDA but listed the violation as "non life-threatening".  I have kept the remainder of the product waiting for a response but to no avail.  So I did not submit the second complaint.  I think if these processors don't get fined then the legislation will be ignored.  It's such a shame that Britain has their act so together as a nation yet our Country still remains profit oriented.  Sorry I have strayed off topic.  Please forgive.

[jobwabe]

21 hours ago, Fenrir said:

Most celiacs wouldn't consider  Chipotle Grill, In and Out Burger, and P F Chiang's as truly gluten free. Chipotle often have employees that don't change gloves between touching tortillas and are dipping hands into containers of ingredients. In and Out Burger, I'm not sure on but if they don't have friers dedicated to french fries (don't also fry breaded items in the same grease) the fries aren't safe and there is a chance to get exposed, same with PF Chiang. 

I got glutened pretty good at PF Chiangs when I first started eating gluten-free. 

 

Not saying you shouldn't ever eat at these places but if you are one of the folks can only eat 100% gluten-free places these places are a risk for cross contamination. 

BUMMER.  At In and Out, nothing goes into the fryer but fresh potatoes, and their gluten allergy free meals' contents (Protein Burger) are gluten free sourced. They have a dedicated prep and cooking surface. But there's always that employee responsibility thing.  Guess I'll start taking GliadinX which is new to me.  I will inquire further.   At Chipotle you have to ask them to change gloves.  They used to change the metal serving spoons as well but seem to no longer do this.  I've always thanked them and told them that had they not be willing to change gloves that I wouldn't be able to eat in one of my few restaurants.  I also tip well. They're always good about it even in rush times.  I always remind my server at P F Chiang's how harmful a violation would be.  And always order the gluten free meals, of course.  My friend did violate there once having eaten there many times.  He phoned the manager who was extremely concerned and apologetic, but...   It can take me 3 months to return to normalcy after a violation so I always give a lot of communication about it to my servers. I will now probably take GliadinX every time out as I just can't afford violations at my age.

[cyclinglady]

On 2/11/2020 at 1:33 PM, docaz said:

I do in fact live in an urban area and there are many more choices. I thought that the gluten-free awareness has reached a high level  and that most places would have pure gluten-free restaurants (at least in the US) but I guess, I am wrong.

Obviously, I think that GliadinX is of great help but many pople who do not read the studies supporting it are skeptical. It also does not help that some people who have big online followings are posting negative comments but without ever mentioning any studies. Their reasoning is that it might encourage people to cheat and these people have to be protected but people are cheating anyway. The fact that Nevaxx did not pan out is unfortunate so we have to live for now with what we have. 

I still like this topic.  

What studies?  I have been to the Gliadin-X website and can not find any  randomized, controlled trial studies pertaining to this particular supplement.    Most of the studies listed are not even related to this particular product.  The studies on enzymes generally conclude that while promising in theory, further studies are needed.  Please read them yourself:

https://www.gliadinx.com/publications

Testing in a “test tube”  is not the same as testing on an actual person who has celiac disease.  In theory it may work, but it is just a theory.    Most of the studies listed on the Gliadin-X website are not even cited correctly (as any high school student can attest).  Just listing the names of the “studies” sounds impressive, but for example, when you open one of them it links you to blogger!  How credible is that?  Others are just theories.  Nothing concrete.   Call that being skeptical, but I am waiting for input from major celiac centers or the Gastroenterologist’s Association before I make a recommendation to forum members to take enzymes to prevent a celiac disease flare up.  

Too often medical has jumped on the bandwagon of implementing treatment plans without science-based evidence.  Things like fat causes heart disease (but now people are fatter than ever and diabetes has increased dramatically), stents prevent heat attacks, vaccines cause illness,  the list is endless.  Sometimes, more harm is caused.  

Does Gliadin-X work?  I am sure not willing to risk recommending something that all major celiacs centers in the world are not backing.  When I hear doctors like Dr. Joseph Murray or Dr. Alessio Fasano recommend an enzyme supplement to help offset a gluten contamination exposure,  then I will support it.  I can not rely on a few layman who swears it works.  That they, as laymen, are doing cutting edge research.  That they know more that medically trained researchers.  The risk is too high.  I certainly do not want to harm members.  

This is what is on the Gliadin-X website.  Nice to make a donation, but they do not have an endorsement”

“Gliadin-X® is supporting research in the field of gluten digestion and is a proud sponsor of the University of Chicago Celiac Disease Center*.

*The University of Chicago Celiac Disease Center does not endorse or recommend this or any other product.”

This article does quote Dr. Fasano and other celiac disease experts in 2017 on the subject:

https://www.healthline.com/health-news/could-enzyme-help-gluten-free-diet#1

If you have celiac disease, please be careful.  

 

 

Edited February 12, 2020 by cyclinglady

[docaz]

These are all great questions and the great skepticism has been caused by mostly DPP-IV enzymes that break down the gliadin molecule in smaller segments but do not cut the immunogenic component in smaller segments therefor they do not have any influence on the inflammatory response. 

Alls studies on the this page https://www.gliadinx.com/publications are performed with AN-PEP which is the main ingredient in GliadinX and it has a higher concentration than any other product. So all quoted studies are relevant.

This is one publication by the former head of the University of Chicago Celiac Center (who is on par with Dr. Murray) and particularly names GliadinX as one of the promising options. See section 12 (It suggests that only .2gm of gluten can be broken down but that is already amazing because that is more than most cross-contamination) There is evidence that it can do better but I think that all agree that this is already very good https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6024684/  

This is clinical study and as the title says it is a randomized clinical study with exactly the ingredient in GliadinX

(It shows how under real conditions AN-PEP completely broke down a large amount of gluten before it entered the small intestine. Now critics might say that the volunteers were healthy but the enzymes work independently of the fact that the patient is healthy or not because they work in the stomach and not related to the immune system)

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

Here is another randomized clinical trial with the ingredient in GliadinX. This was done for European approval because the regulations in Europe are different than in the US.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5638938/

You mentioned Dr. Murray who is the head of the Mayo Clinic Celiac Center.

This is what he wrote about AN-PEP

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3788609/

 

Here is a link to the pdf of the Celiac Symposium from a few months ago in France. You have to search the document for the abstract but you can see that GliadinX (named specifically) has shown to completely break down the alpha-gliadin 33mer that is responsible for the reaction in celiac disease. This study also showed just like others that DPP-IV does not work

https://www.snfge.org/download/file/fid/3685

Yes, there is also a link to a blogger but that is a publication specifically looking at current trends and describes the findings in lay terms which the publications do not do. 

On a different note, I am actually in touch with one of the clinicians who you quoted and we are designing a gluten-challenge test. It is indeed unfortunate the there are only a couple of center that have credibility. This is unlike any other field who is not dependent on the opinion of 5 people. One of the main centers has a conflict of interest because they are in the process of studying another product. 

I think that we would all agree that the above links are pointing to publications that are quite compelling

 

 

[docaz]

11 minutes ago, docaz said:

These are all great questions and the great skepticism has been caused by mostly DPP-IV enzymes that break down the gliadin molecule in smaller segments but do not cut the immunogenic component in smaller segments therefor they do not have any influence on the inflammatory response. 

Alls studies on the this page https://www.gliadinx.com/publications are performed with AN-PEP which is the main ingredient in GliadinX and it has a higher concentration than any other product. So all quoted studies are relevant.

This is one publication by the former head of the University of Chicago Celiac Center (who is on par with Dr. Murray) and particularly names GliadinX as one of the promising options. See section 12 (It suggests that only .2gm of gluten can be broken down but that is already amazing because that is more than most cross-contamination) There is evidence that it can do better but I think that all agree that this is already very good https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6024684/  

This is clinical study and as the title says it is a randomized clinical study with exactly the ingredient in GliadinX

(It shows how under real conditions AN-PEP completely broke down a large amount of gluten before it entered the small intestine. Now critics might say that the volunteers were healthy but the enzymes work independently of the fact that the patient is healthy or not because they work in the stomach and not related to the immune system)

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

Here is another randomized clinical trial with the ingredient in GliadinX. This was done for European approval because the regulations in Europe are different than in the US.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5638938/

You mentioned Dr. Murray who is the head of the Mayo Clinic Celiac Center.

This is what he wrote about AN-PEP

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3788609/

 

Here is a link to the pdf of the Celiac Symposium from a few months ago in France. You have to search the document for the abstract but you can see that GliadinX (named specifically) has shown to completely break down the alpha-gliadin 33mer that is responsible for the reaction in celiac disease. This study also showed just like others that DPP-IV does not work

https://www.snfge.org/download/file/fid/3685

Yes, there is also a link to a blogger but that is a publication specifically looking at current trends and describes the findings in lay terms which the publications do not do. 

On a different note, I am actually in touch with one of the clinicians who you quoted and we are designing a gluten-challenge test. It is indeed unfortunate the there are only a couple of center that have credibility. This is unlike any other field who is not dependent on the opinion of 5 people. One of the main centers has a conflict of interest because they are in the process of studying another product. 

I think that we would all agree that the above links are pointing to publications that are quite compelling

 

 

I am writing this on a separate note because many people are hoping for an FDA approval of such a product but because there is a combination of facts that makes it impossible for such a product to be FDA approved and here are the reasons

1. Celiac disease is common but not common enough to be big enough to make it big.

2. The moment such a product is approved, the over-the counter version which would be much cheaper would be preferred and then the 10 years of struggle and the money is lost. Enzymes do not have to be FDA approved if there is no specific indication related to a disease. 

3. Celiac disease has a relatively slow onset and slow recovery and because of that a gluten challenge has to be done over 6 months or more and it is almost impossible to do a controlled study over such a long period of time because it would be too intrusive on the live style. The only way that this might change if the FDA will accept certain extrapolations such as proof that the gliadin is in fact completely broken down and this simulates a gluten-free diet. The other issue is that enzymes do not cure or prevent celiac disease, they only help to maintain a gluten-free diet so they have no influence on the disease itself

Keeping that in mind, buy not recommending taking AN-PEP are we protecting a person from a bad product or are we asking someone to give up the only possible option to make life a little safer?

[Fenrir]

@cyclinglady

I'm not sure what you'r reading but at least three of the studies on they list on the site are on humans. One is randomized double-blind controlled....?

My only concern about the product is that if in capsule form does it get mixed well enough in the stomach to be effective. I'm not and expert in stomach function but that is the question I would raise. According tot he studies, the low PH of the stomach actually makes the enzyme more effective at breaking down gluten so I think the reaction is valid. I just wonder if enough of the enzyme gets into contact with gluten to naturalize it. The studies do take food from the stomach and small intestine showing that the gluten is greatly reduced, so I'm inclined to say that it mixes well enough. 

[cyclinglady]

44 minutes ago, Fenrir said:

@cyclinglady

I'm not sure what you'r reading but at least three of the studies on they list on the site are on humans. One is randomized double-blind controlled....?

My only concern about the product is that if in capsule form does it get mixed well enough in the stomach to be effective. I'm not and expert in stomach function but that is the question I would raise. According tot he studies, the low PH of the stomach actually makes the enzyme more effective at breaking down gluten so I think the reaction is valid. I just wonder if enough of the enzyme gets into contact with gluten to naturalize it. The studies do take food from the stomach and small intestine showing that the gluten is greatly reduced, so I'm inclined to say that it mixes well enough. 

One study was done with self-reported gluten sensitive people while the other studies were done on healthy people and/or in vitro.    In the study that included celiacs, sample size was tiny and the duration was too short.  Promising, but inconclusive.    It stated that more studies were needed.  It did not recommend the product.  

I am not a scientist or a medical doctor.  I am only pointing out that I will not endorse or recommend a product that has not been vetted by the major celiac centers.  I will stick with the current method of treatment which is a gluten free diet.  

 

 

Edited February 13, 2020 by cyclinglady

[docaz]

5 minutes ago, cyclinglady said:

Only one study was done with celiacs while the other studies were done on healthy people and/or in vitro.    In the study that included celiacs, sample size was tiny and the duration was too short.  Promising, but inconclusive.    It stated that more studies were needed.  It did not recommend the product.  

I am not a scientist or a medical doctor.  I am only pointing out that I will not endorse or recommend a product that has not been vetted by the major celiac centers.  I will stick with the current method of treatment which is a gluten free diet.  

 

 

I can completely understand the skepticism because of the many products that made false promises.

As mentioned before, enzymes work the same way in healthy patients as in celiacs and to do the study in the safest environment, healthy patients were chosen. Actually enzymes are not vetted by major center but are investigated including ALV003 and KumaMax. Some publication that I posted are from these major centers. Yes, you can point out possible issues with one or the other study. Not all are perfect but if we look at them cumulatively, the work is excellent. (I can post a 100 plus page doctor thesis from the University of Leiden by Dr. C. Mitea or you can google it yourself but it very hard to read). You do not have to recommend the product but let's go along with you that it is inconclusive but promising. If that's the case, would you not spend 50 cents just in case it helps? Worst case scenario, you lost 50 cents and best case scenario it actually helped. 

It is really important to mention that this in not instead of a gluten-free diet but to HELP maintaining a gluten-free diet. 

All experts agree (including Dr. Murray who is these days one of the most prominent clinicians in that field) that a true gluten-free diet is not realistic and are speaking of a gluten-reduced diet because occasional contamination or accidental ingestion is unavoidable. Most people can not avoid social or family situation where they eat in a non-gluten-free environment. My teenage daughter and my son for example want to go eating with their friends without having to pack out food and explain a million things to all around them. Yes, we want to go eating at the grandparents' house. We want to travel to foreign countries in which we might take chances. Some people will not take these risks and that's perfectly OK but for those who do and there are plenty who do even if there is a remote chance that it will help, why not? Everybody will decide what works best for their life-style. 

My celiac kids had very high tTG and one of them had a positive biopsy. They are taking all these chances and their blood levels have stayed normal and even better than on a gluten-free diet alone. They have stayed asymptomatic, have normal growth. Their anxiety (yes, impact on mental health associated with celiac disease is well documented) level has gone down significantly since they started taking enzymes and I think that this is one of the best things that could happen to them. 

By the way, I did go to medical school and even though this is not my specialty, I made it my specialty because that's what a father does to help his kids if it is possible and every time they are in an iffy situation and they take and enzyme, I am smiling inside. Every year, when they get their normal blood tests I am ecstatic and I really wish to others to have the same experiences. 

 

[Fenrir]

8 minutes ago, cyclinglady said:

Only one study was done with celiacs while the other studies were done on healthy people and/or in vitro.    In the study that included celiacs, sample size was tiny and the duration was too short.  Promising, but inconclusive.    It stated that more studies were needed.  It did not recommend the product.  

I am not a scientist or a medical doctor.  I am only pointing out that I will not endorse or recommend a product that has not been vetted by the major celiac centers.  I will stick with the current method of treatment which is a gluten free diet.  

 

 

You rely on the major celiac centers too much, IMO. They basically wouldn't back anything not FDA approved as a prescription medication. There's little money to be made treating such a small number of people that can also be treated with no medication at all. If there is no money to be made, no major pharma companies are going to pay the amount it takes to get FDA approval or fund the major studies. 

The science is actually pretty clear, it does breakdown gluten. There  are multiple studies on humans saying that it works in vivo. People that oppose it keep changing the bar, "well there are no human studies", yes there are. "There are no double blind, controlled studies on humans", yes there are. "There are no double blind controlled studies on celiacs"......

As I've stated elsewhere, I'm pretty versed in reading research having been in research labs before and also working in medical labs. There is less compelling evidence for some widely prescribed prescription drugs approved by the FDA than there is for AN-PEP. 

Nobody on here is really asking for your endorsement or the endorsement of the Celiac Foundation or the University of Chicago Celiac center....

Let me ask this:

Do you endorse taking vitamins?

Do you endorse flu shots?

There's actually pretty iffy evidence that they work as well. 

 

[RMJ]

36 minutes ago, docaz said:

My celiac kids had very high tTG and one of them had a positive biopsy. They are taking all these chances and their blood levels have stayed normal and even better than on a gluten-free diet alone. They have stayed asymptomatic, have normal growth. Their anxiety (yes, impact on mental health associated with celiac disease is well documented) level has gone down significantly since they started taking enzymes and I think that this is one of the best things that could happen to them. 

Docaz, are you saying that your children’s blood antibody levels with gluten-free diet plus enzyme are lower than with gluten-free diet alone?  Do they take them with every meal, or only if contamination is expected?

My blood levels are normal, but one of them is just barely in the normal range.  I’m wondering if the enzymes could improve that one.  Sometimes I don’t have a choice as to where I eat, for example when I visit my 95 year old father at the senior facility where he lives.

[Fenrir]

2 minutes ago, RMJ said:

Docaz, are you saying that your children’s blood antibody levels with gluten-free diet plus enzyme are lower than with gluten-free diet alone?  Do they take them with every meal, or only if contamination is expected?

My blood levels are normal, but one of them is just barely in the normal range.  I’m wondering if the enzymes could improve that one.  Sometimes I don’t have a choice as to where I eat, for example when I visit my 95 year old father at the senior facility where he lives.

It would probably really depend on if you are getting exposed to gluten you're unaware of or not. If your levels are just on the upper end of normal and it has nothing to do with gluten exposure then it probably won't make any difference if you take GliadinX.

IME, you still need to know where you may be getting exposed in order for GliadinX to be useful. It's not really practical to take it with every meal (IMO). I suppose if you are unable to identify the source you could take it every time you eat something but that could be expensive. 

[cyclinglady]

3 hours ago, docaz said:

I can completely understand the skepticism because of the many products that made false promises.

As mentioned before, enzymes work the same way in healthy patients as in celiacs and to do the study in the safest environment, healthy patients were chosen. Actually enzymes are not vetted by major center but are investigated including ALV003 and KumaMax. Some publication that I posted are from these major centers. Yes, you can point out possible issues with one or the other study. Not all are perfect but if we look at them cumulatively, the work is excellent. (I can post a 100 plus page doctor thesis from the University of Leiden by Dr. C. Mitea or you can google it yourself but it very hard to read). You do not have to recommend the product but let's go along with you that it is inconclusive but promising. If that's the case, would you not spend 50 cents just in case it helps? Worst case scenario, you lost 50 cents and best case scenario it actually helped. 

It is really important to mention that this in not instead of a gluten-free diet but to HELP maintaining a gluten-free diet. 

All experts agree (including Dr. Murray who is these days one of the most prominent clinicians in that field) that a true gluten-free diet is not realistic and are speaking of a gluten-reduced diet because occasional contamination or accidental ingestion is unavoidable. Most people can not avoid social or family situation where they eat in a non-gluten-free environment. My teenage daughter and my son for example want to go eating with their friends without having to pack out food and explain a million things to all around them. Yes, we want to go eating at the grandparents' house. We want to travel to foreign countries in which we might take chances. Some people will not take these risks and that's perfectly OK but for those who do and there are plenty who do even if there is a remote chance that it will help, why not? Everybody will decide what works best for their life-style. 

My celiac kids had very high tTG and one of them had a positive biopsy. They are taking all these chances and their blood levels have stayed normal and even better than on a gluten-free diet alone. They have stayed asymptomatic, have normal growth. Their anxiety (yes, impact on mental health associated with celiac disease is well documented) level has gone down significantly since they started taking enzymes and I think that this is one of the best things that could happen to them. 

By the way, I did go to medical school and even though this is not my specialty, I made it my specialty because that's what a father does to help his kids if it is possible and every time they are in an iffy situation and they take and enzyme, I am smiling inside. Every year, when they get their normal blood tests I am ecstatic and I really wish to others to have the same experiences. 

 

Very well stated.  ?

I do think we have hijacked this thread.  Maybe it is time to start a new thread for discussion.  My apologies to all for getting off topic. 

[docaz]

2 hours ago, RMJ said:

Docaz, are you saying that your children’s blood antibody levels with gluten-free diet plus enzyme are lower than with gluten-free diet alone?  Do they take them with every meal, or only if contamination is expected?

My blood levels are normal, but one of them is just barely in the normal range.  I’m wondering if the enzymes could improve that one.  Sometimes I don’t have a choice as to where I eat, for example when I visit my 95 year old father at the senior facility where he lives.

Yes, this is exactly what happend. My daughter started out at just below 100 and my son in the 30s. We had a completely gluten free house (with the exception of a small drawer where I hid some things) for about 18 months and socially and traveling was very difficult. We have to travel because we have family overseas and about 8 years or so ago, having anything gluten-free was very hard. This has changed since. We brought food everywhere with us and ran around with translated restaurant cards to inform the waiters that this is serious and they really have to pay attention. Their levels went down to the higher limit of the normal range. We know of several times when we thought things would be gluten-free and they were not. Obviously we assume that there were times when this happened and we never found out. 

Being in the biotech field, I looked for any studies, I could enroll my kids in. The only study that was going on was the Alvine study but that was for adults. (This is by the way a good product but will possibly never make it through the FDA because of reasons I mentioned earlier)  Then I read about the work with AN-PEP and went to Europe to meet the researchers and was fortunate to receive a sample from the first production batch. We started filling capsules at home. The next blood test came low normal and so did every single one since and we know for sure that the kids have been exposed to gluten. When we really, really know that the food is gluten-free, they do not take enzymes but when there is any doubt the take enzymes.

[docaz]

3 hours ago, Fenrir said:

It would probably really depend on if you are getting exposed to gluten you're unaware of or not. If your levels are just on the upper end of normal and it has nothing to do with gluten exposure then it probably won't make any difference if you take GliadinX.

IME, you still need to know where you may be getting exposed in order for GliadinX to be useful. It's not really practical to take it with every meal (IMO). I suppose if you are unable to identify the source you could take it every time you eat something but that could be expensive. 

This is very true. Unfortunately, the AN-PEP is more expensive than many other enzymes and it only comes from one source and was discovered by chance because it make cold brewed beer clear faster. The cloudy proteins in beer are proline-rich just like the gliadin and that's what prompted the researchers to look into the gluten degradation. Generally though, 50 cents per meal is not too bad. 

[docaz]

36 minutes ago, cyclinglady said:

Very well stated.  ?

I do think we have hijacked this thread.  Maybe it is time to start a new thread for discussion.  My apologies to all for getting off topic. 

Sounds like a plan

[julie falco]

On 2/10/2020 at 9:17 PM, cyclinglady said:

Wow!  A first time poster and you really have to go on the attack?  

Did you read my earlier post on this subject?  Some celiacs are more sensitive than others and flour in the air is a real thing (read my links).  But it does sound like you only get salads and not gluten free pizza at pizza joints.  Is that correct?  

Many celiacs are asymptomatic.  Symptoms can wax and wane.  How do you know that you are not getting sick?  Have you had follow-up testing?  A repeat biopsy?  How do we know that you “have a clue”?  Just your personal opinion?  

As I said before, I like this debate.  ?

Just something to think about.  

I know of a couple of people that have celiac yet show no signs of being glutenated yet they are still doing the damage to there small intestins it is a know fact look it up