Diagnosed only 3 days ago with coeliac disease :-( Gliodan antibodies high and duodenal biopsies showed ‘subtotal villous atrophy’. Have done abrupt withdrawal from gluten and I honestly feel worse now off gluten than I did on it :-(

[Wheatwacked]

I solved my lactose issue by making my own fermented pickles to increase my lactobacillus. Most of our lactase comes from bacteria in our gut that are overwhelmed by the bad guys and antibiotics. Our denovo production of lactase is really only enough for infants. Daytime milk was ok but I still would wake in the night with stomach upset if I drank milk before bed. So I switched to grain free, 100% pasture fed milk and problem solved. Milk is an important source of potassium and calcium in my diet.

"Grass-fed dairy and organic dairy cows provide milk significantly higher in beneficial fatty acids and lower in omega-6."   Grass-fed cows produce healthier milk | UMN Extension   https://extension.umn.edu/pasture-based-dairy/grass-fed-cows-produce-healthier-milk

[Oldturdle]

22 hours ago, docaz said:

This is exactly the problem. The moment you go to place that has also gluten, your chance of being exposed to gluten is quite high and every study has confirmed this.

If you have a family with kids who want to have a social life and spend time with other kids or you have to go to a business meeting or just eating at grandmother's house for a holiday, you are risking to be exposed to gluten.  Avoiding these situations puts you and your family complete social isolation and that can be pretty tough and maybe even more challenging than celiac disease itself. 

Also, if you are in a more rural area or in a country that does not have adequate resources, you might not have a dedicated gluten-free restaurant or bakery. 

For this reason, experts are actually looking into calling it "gluten-restriction" rather than "gluten-free" diet since they recognize that only very few people can live a life without any risk of exposure. It appears that if the exposure is rare enough, the effects are manageable but since we do not know how often is "rare enough" one should be cautious.

https://www.glutenfreeliving.com/gluten-free-foods/diet/is-a-truly-gluten-free-diet-possible/

This is the reason, why I worked on GliadinX to help maintaining a gluten-free diet and I know for sure that my kids have been exposed to gluten but their blood levels have stayed within the normal range for 8 years. For disclosure, they did not have a follow up endoscopy and some clinicians suggest that this would be a more adequate test but they are completely asymptomatic.  Of course, a sample of two is not enough information to extrapolate for everybody but hopefully the ongoing study with 80 volunteers will shed more light on the efficacy of GliadinX. 

 

Docaz,  thank you so much for developing Gliadinx!  You are so right about how much a diagnosis of celiac disease can interfere  with the enjoyment of a social life.  For example, yesterday I attended a very large Memorial Day barbeque/potluck.  There were many different dishes being served,  with many different cooks creating them.  I am sure the cross contamination was rampant from every direction.  I choose foods that I knew were gluten free, and took one Gliadinx before eating, and another one before I went in for "round two."  I hope this is how you intended these capsules to be used.  I thoroughly enjoyed myself, and felt very "normal."  (Gluten free beer is a nice invention, too!)  I had no Ill effects from this party, and again thank you for putting Glidinx on the market.

[docaz]

1 hour ago, Oldturdle said:

Docaz,  thank you so much for developing Gliadinx!  You are so right about how much a diagnosis of celiac disease can interfere  with the enjoyment of a social life.  For example, yesterday I attended a very large Memorial Day barbeque/potluck.  There were many different dishes being served,  with many different cooks creating them.  I am sure the cross contamination was rampant from every direction.  I choose foods that I knew were gluten free, and took one Gliadinx before eating, and another one before I went in for "round two."  I hope this is how you intended these capsules to be used.  I thoroughly enjoyed myself, and felt very "normal."  (Gluten free beer is a nice invention, too!)  I had no Ill effects from this party, and again thank you for putting Glidinx on the market.

Hi,

This is exactly how GliadinX should be used. You still have to be cautious but hopefully it alleviates some of the anxiety in any setting that is not completely controlled. At this time, GliadinX is not my primary source of income and in fact it is not profitable yet and the type of experience you have is what makes me very happy. 

Even if AN-PEP (GliadinX) has by far more publications than any other available product on the market it is unfortunately still often lumped in into the same category with lots of products that have shown not to work (mostly DPP-IV formulations with catchy names). On some Facebook groups, members are discouraged to discuss this because the administrators feel that they have to protect their members from useless products. It is quite unfortunate the they are not willing to at least read the independent high quality peer-reviewed publications. Each one of the papers either confirms that AN-PEP works or at the minimum, they suggests that AN-PEP promising. Virtually no publication has shown negative effects and only one publication could not prove the benefits because the duration of the study was very short and neither the AN-PEP group nor the placebo group showed increase in inflammation. So, if you are on some of those groups (and be prepared to be attacked), please spread the word. 

On a separate note, AN-PEP was originally used to make cold brewed beer clear (Brewers Clarex) and the Dutch scientist/inventor Luppo Edens (who I had the pleasure to meet), realized that the what makes the beer cloudy is a proline-rich protein. Gliadin, which is the inflammatory component in celiac disease is also very proline-rich and the human body can not digest proline rich proteins. At this time, there is gluten-removed or gluten-reduced beer treated with AN-PEP and the resulting beer does not have detectable gliadin but there is a concern that the testing methods are not accurate enough and for that reason, those beers are not considered safe. In my opinion, it is just a matter of time until the testing methods will be validated. The enzyme concentration might also need to be tweaked to completely remove all gluten and then a gluten-removed beer which tastes like regular beer might be considered safe. Here is a blog that is pretty good and explains the pros and cons of gluten-reduced beer. 

https://bestglutenfreebeers.com/the-gluten-eating-enzyme-thats-revolutionizing-gluten-free-beer/

 

 

[Oldturdle]

If you are talking about Omission beer, that is what I was drinking at the barbeque.  Delicious!

[docaz]

On 9/6/2021 at 7:33 PM, Oldturdle said:

If you are talking about Omission beer, that is what I was drinking at the barbeque.  Delicious!

Yes, Omission beer is treated with the same endopeptidase that is the main ingredient of GliadinX. You can read on their website that according to existing tests, their gluten content is less than 20ppm but the issue is that the reliability of the testing method that is used to measure how much gluten was removed is not fully validated. I hope that within not too long time, we will have a way to validate the tests and that will be very useful not only for beer but for many other products that start out with a gluten-containing ingredient and then the gluten is removed. There is also promising work done with gluten-free bread that actually tastes like real bread. 

 

[Oldturdle]

16 hours ago, docaz said:

Yes, Omission beer is treated with the same endopeptidase that is the main ingredient of GliadinX. You can read on their website that according to existing tests, their gluten content is less than 20ppm but the issue is that the reliability of the testing method that is used to measure how much gluten was removed is not fully validated. I hope that within not too long time, we will have a way to validate the tests and that will be very useful not only for beer but for many other products that start out with a gluten-containing ingredient and then the gluten is removed. There is also promising work done with gluten-free bread that actually tastes like real bread. 

 

Sign me up for that bread!

[fllstuart77]

codex wheat bread..

its real wheat.. just that the gluten has been washed out or something

[trents]

7 hours ago, fllstuart77 said:

codex wheat bread..

its real wheat.. just that the gluten has been washed out or something

https://www.theglutenfreeblogger.com/what-is-gluten-free-wheat-starch-and-is-it-safe-for-coeliacs/

Just a caution here. 20ppm is proving to not be a strict enough standard for many celiacs. And with regard to the expectation that codex wheat starch will return the true wheat texture to gluten free baking? Remember, gluten is the protein responsible for causing real bread to "hold together" so well and not crumble.

[Oldturdle]

Fllstuart77,

I have done some minor research on the codex wheat starch, which apparantly just got cleared to be used in gluten free products in the U.S.  this must be included in the ingredient list, and listed as a possible allergen below the ingredients list.  The product needs to be labeled gluten free, tested so that any gluten particles are in the range considered safe for all celiacs, (20 parts per million?)  This codex wheat starch has seemingly been used for quite some time in Europe, and considered safe.  My question is, does anyone know of any bread made from this that is available in the U.S?  I have read that Schar brand has  a codex wheat starch baguette available, but have not seen it.

[GodsGal]

1 hour ago, Oldturdle said:

Fllstuart77,

I have done some minor research on the codex wheat starch, which apparantly just got cleared to be used in gluten free products in the U.S.  this must be included in the ingredient list, and listed as a possible allergen below the ingredients list.  The product needs to be labeled gluten free, tested so that any gluten particles are in the range considered safe for all celiacs, (20 parts per million?)  This codex wheat starch has seemingly been used for quite some time in Europe, and considered safe.  My question is, does anyone know of any bread made from this that is available in the U.S?  I have read that Schar brand has  a codex wheat starch baguette available, but have not seen it.

Is that what DiGiorno is using in it's gluten free crust?

[fllstuart77]

DiGiorno tested positive for gluten...

plus its dairy...     do most celiacs  still eat dairy?

 

 

=========

Can you explain???

I have celiac disease and was looking forward to something different from your company, to find out that it still has Wheat in it. The product wouldn't be gluten free if it had Wheat. Can you explain the process of this. It would be nice to have an all gluten free pizza not just the crust

 

Response from Nestlé Goodnes:

DiGiorno® Brand Ambassador 

· a month ago  

While we cannot provide specific dietary advice to our consumers who have celiac disease or who are otherwise sensitive to gluten, we can assure you that these products meet the FDA requirements for gluten free foods, which can be tolerated by most people with celiac disease. Also, the wheat starch that we use goes through a rinsing process to remove gluten.

[GodsGal]

3 minutes ago, fllstuart77 said:

DiGiorno tested positive for gluten...

plus its dairy...     do most celiacs  still eat dairy?

I personally don't, but I know some that will eat a bit from time to time. 

[trents]

8 minutes ago, fllstuart77 said:

DiGiorno tested positive for gluten...

plus its dairy...     do most celiacs  still eat dairy?

 

 

=========

Can you explain???

I have celiac disease and was looking forward to something different from your company, to find out that it still has Wheat in it. The product wouldn't be gluten free if it had Wheat. Can you explain the process of this. It would be nice to have an all gluten free pizza not just the crust

 

Response from Nestlé Goodnes:

DiGiorno® Brand Ambassador 

· a month ago  

While we cannot provide specific dietary advice to our consumers who have celiac disease or who are otherwise sensitive to gluten, we can assure you that these products meet the FDA requirements for gluten free foods, which can be tolerated by most people with celiac disease. Also, the wheat starch that we use goes through a rinsing process to remove gluten.

I still consume dairy and have no issues and I think many or most celiacs do still do consume dairy without issue. A significant number of celiacs cannot tolerate dairy. It is common but maybe not typical. That would be my take. What I thought might be dairy intolerance turned out to be egg intolerance, or a partial egg intolerance. I can still eat egg in limited amounts.