docaz

These findings are very helpful because they might obsolete unnecessary biopsies but they do beg the question of why even measuring IgA as a standard celiac screening test if it does not correlate with the disease. 

16 hours ago, Guest FrenchFried said:

Please make sure you don’t also have a POTATO ALLERGY when consuming GliadinX. 

Indeed, the flow agent maltodextrin that is in GliadinX is potato derived. Sometimes that component is wheat derived but the potato source was chosen (even if the wheat derived option is also considered gluten-free because of the purification) to avoid any concern of gluten contamination. I do not know how common potato allergies are but if someone is allergic to potatoes, then this is a consideration. 

My contribution to this thread is inspired by Dr. Guandalini who is a world renowned expert

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I have spoken recently to him and his opinion is that biopsies are widely overused in the US because the blood tests are in most situations sufficient. In a situation like this one, a gluten-free diet will be recommended regardless of the outcome of the biopsy. 

Just a few days ago, I happened to talk to Dr. Guandalini, the founder of the University of Chicago Celiac Center (please feel free to do a web-search, who he is) about the recent good test results of my own children and how it relates to GliadinX. He actually performed the endoscopy on one of my children. His opinion is that endoscopy is widely overused for diagnosis of celiac disease in the US and that many, if not most endoscopies are not necessary. 

2 hours ago, Guest Renee said:

I definitely get very sick ( GI problems, severe migraine) drinking distilled alcohol made from gluten. 
Before I was even diagnosed with celiac and thus reacted to gluten, I knew I could drink Tanqueray and feel fine but if I drank Bombay I was very sick. Tanqueray is not made from wheat and Bombay is. 
This is terrible news for very sensitive Celiacs! 

In order to have a somehow normally functioning society, if all restrictions are based on the few exceptions instead of the large majority, the system collapses. Obviously the FDA has the task of protecting as many people as possible but if only medications or devices would be approved that have 0 complications, then nothing would get approved. Therefore acknowledging that the distillation process gets rid of gluten is great news for the large majority because it takes the fear away and whoever is very sensitive, needs to make adjustments accordingly. This is the case anyway because the FDA recognizes something as gluten-free if it has less than 20ppm gluten content but very few people appear to react to as little as 5ppm but the FDA does not want to overburden the industry and causing a big price increase for already more expensive products and accepts the higher limit.  

This is a big step forward from the FDA, removing scientifically unsubstantiated uncertainty regarding gluten content which is not detectable in distilled beverages.

I made a slight variation today in an instant pot duo by first cooking the chicken in the pressure cooker for 20 minutes and then using the air fryer lid for 10 minutes and then turning the chicken on the other side and frying for 10 more minutes following this recipe of the marinade with minor variations and it turned out absolutely excellent (as judged by my picky kids). Thanks for sharing! 

On 4/9/2020 at 4:20 PM, Guest Hank said:

After my Celiac diagnosis more than a decade ago I've had a perfect track record of not just thinking' What the heck!' and wolfing down food I know contains gluten, and I've educated myself on the sources people normally wouldn't expect.
It would be a good thing to know the average unintended exposure a person might get and the threshold before auto-immune damage begins to occur.
The idea of an enzyme pill taken before a trip to a restaurant is one I've seen here before, something like that would go a long way towards allowing Celiac patients a better quality of life.

Yes, this is exactly the reason for AN-PEP / GliadinX.

It appears that the threshold is not the same for all people. For some it is 200ppm and for some as low as 5ppm but unfortunately it is hard to figure it out. 

19 hours ago, Guest Ryan said:

I just wanted to point out that this article says that GliadinX/AN-PEP helps with gluten sensativity, a claim which is contradicted by the article posted March 2020 about enzymes for breaking down gluten. 

GliadinX/AN-PEP does not have any effect on celiac disease or gluten sensitivity because these are systemic diseases but it is very effective in breaking down the gliadin molecule and that's how it helps celiac patients and some gluten sensitive people (only the ones related to the gliadin molecule) maintaining a gluten-free diet. There is no contradiction at all because there is a big difference if something has an effect on the body or on the ingested food. GliadinX has no effect on the body and only on the food. It is clearly established that a gluten-free diet without any cross-contamination is very unrealistic. We can see just on this site alone how many people who are very careful, report cross-contamination or accidental gluten-ingestion. GliadinX breaks down the contaminants in the stomach into small harmless fragments but unlike a vaccine for example, it does not change the underlying disease and until we will have a cure that will change the underlying disease, this is the best we have so far and lots of research shows that it is very good. There are several people on this site who dispute that but are only either expressing their own opinion or referring to other opinions that are not based on any study because all studies with the exception of one study show how effective it is. The only study that is ambiguous is one in which celiac patients were challenged with gluten and AN-PEP was given. They did not have symptoms or got worse but the placebo did the same and this is because the study was much too short. 

Finally!! The data was clear for a long time that blood tests are very specific and sensitive. Subjecting children to a general anesthetic when the diagnosis was determined anyway by the blood tests is not only expensive but poses unnecessary risks. The concept that biopsy is the gold standard is just not true because even with a negative biopsy, if the blood tests are positive, the diagnosis is established. This is not how a gold standard works. 

Looking at the government clinical trial page, it appears that the study is requiring the participants to maintain a gluten free diet and it is not a gluten challenge study? Is that the case, or are some participants actually ingesting gluten? Thx for the info.

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Very well written. It is always a struggle finding the balance between not being cautious enough and risking exposure to gluten or going overboard and making live unnecessarily hard. 

5 hours ago, RMJ said:

I didn’t say it should be withheld, I just disagreed with worst case.

OK, I see your point and agree with it.  

2 minutes ago, RMJ said:

I think the worst case is that someone will think that taking the enzyme means they can be less careful, and they eat more gluten which harms them.

I can see that but should that be a reason to withhold it from people who are very, very careful?

4 hours ago, cyclinglady said:

If it is so amazing, why is this product not being recommended by the world’s leading celiac disease research centers?  Could it be due to the study participant size of just 18 people and that more research is needed?  

This is a very good question and indeed, major centers are looking at AN-PEP but are still cautious.  The enzymes have been available for laboratory testing about 14 years ago but have been on the market only for a few years. It is clearly proven the AN-PEP does break down the immunogenic component of gluten, the attenuation of the inflammatory reaction in the small intestine is extrapolated but not proven yet. The challenge is that a study has to be performed over a very long period of time because it takes a while for the inflammatory reaction to kick in and also a long time for it to resolve. 

This is a publication by the team of the University of Chicago Celiac Center (section 12 of the paper)

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The above mentioned publication by the National Celiac Association (with members from all major celiac centers) is also cautiously optimistic.

This is one of the early studies from a leading center in Leiden, Netherlands 

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This is a study authored by the head of the Mayo Clinic and you can see in section C that AN-PEP is considered to be very effective in breaking down gluten and it goes so far to suggest that it has the ability to decrease inflammation. "In vitro studies have also shown that ANPEP eliminates the ability of gluten to stimulate T cells [Open Original Shared Link]."

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In this years' expert panel discussion sponsored by Beyond Celiac, all panelists agreed that it is impossible to keep a 100% gluten-free diet without unacceptable social implications. No study has ever suggested that oral enzymes have negative effects. In worst case one wasted money and in best case scenario, these enzymes can help to maintain a gluten-free diet because accidental consumption will for sure happen.

Particularly when traveling, cross-contamination is a higher risk because of language and cultural barrier. I think that everybody should have AN-PEP enzymes in their "emergency kit". Even under best conditions, contamination or accidental gluten consumption is not always available but in particular traveling adds stress and I think that this article is very well written how to prepare. We travel a lot and follow many of the described recommendations. 

Here is one of many studies showing how effective AN-PEP is

Open Original Shared Link

For disclosure, I am involved in a company that manufactures an AN-PEP formulation that I personally think has some significant advantages over others but I purposely do not want to mention the name because I do not want this to distract from the value of this amazing enzyme that is now available in various formulations.

1 hour ago, psawyer said:

Check out the sodium content, before deciding that this is a "healthy" food choice.

Keeping a gluten-free diet is not easy and sometimes we will eat too much sodium, saturated fats, carbohydrates, nitrates or whatever else there is and if it is in moderation we can say sometimes "Yes" just because we enjoy it, instead of always "No".

This burger is available to restaurants and they can put it on whatever bun they want. I am not gluten free but my kids are. I must admit that I ordered it a restaurant that is very "gluten-free-aware" but I had it on a regular wheat bun because I wanted to do my own experiment how it compares to a regular beef burger and it was really very good. I might sound like a rep of the company but I am not at all. My kids and I just really liked this one and the beyond burger.  I did not find the impossible in grocery stores but we buy the beyond and while it tastes differently both of them taste much closer to meat than other veggie burgers that I tried in the past (if the goal is to have a meat burger taste without the meat, which is not always the case).

The question that is also worth evaluating is how much adhering to a gluten-free diet is causing a psychopathology in addition to studying how gluten is the culprit. There is no question that a gluten-free diet has social implications and puts a lot of stress on the children, on parents and others because a simple dinner at a restaurant or at relatives house or any friend's birthday celebration comes with a certain amount of anxiety. 

I like eating meat and wanted to try this burger in a restaurant just because. I was very impressed. With all the condiments, I am not sure I would be able to tell the difference between meat and the impossible and I tried that patty by itself and it was also very good. 

My kids also like beef burgers and I grilled just to try out a different brand, the beyond burger and it absolutely got my kids' approval. I would not be surprised if these two and maybe others will take a "big bite" out of the traditional meat burgers, so the fact that they are gluten-freee is awesome news.

Two of my children were diagnosed about 7 years ago and the yearly blood draws were quite traumatic for one of them. I did order this test and it was a much nicer experience for the younger one. The other preferred the blood draw because she picked on the wound and it bothered her so I guess, it is a matter of preference but it was great for our younger one. The fact that the head of the University of Chicago Celiac Center is on the advisory board of that company is also reassuring that the test does what it is supposed to do.