Help with staying gluten free

[docaz]

22 hours ago, Kate333 said:

I feel for you because it must be very hard, challenging to live in a house with gluten-eaters.  It's also hard, challenging to live with constant worry about getting CC from G consumed by others.  The safest thing is to prepare your own meals using your own utensils, plates, pots/pans, etc. (as shared ones can expose you to others' bread crumbs).  Sounds like a big headache but you will get the hang of it with experience.  Also, many stores sell cute, small microwaves.  I would also advise you to tell your roomies a bit about your medical condition so they will better understand how avoiding G is not just your desire to follow a cool new diet "trend" but actually vital to your health.  It's amazing how considerate, protective people can be once they realize they can actually help boost your health by making a few simple changes in the kitchen.  

Re: the GliadinX comments. I gotta agree with CL on this issue.  Also, at the risk of having my comment deleted, I must say that I think it does a disservice--esp. to already scared, overwhelmed celiac disease newbies like myself who are here merely to find hope, encouragement, and learn gluten-free living tips from survivors--to make direct sales pitches for products not yet proven or accepted by the medical community as safe or effective....Products that can potentially harm celiac disease patients with a false sense of security about G exposure.  Perhaps someday GliadinX will be proven THE miracle treatment  (or not) we all pray for...But until then, I would NEVER roll the dice and risk my health/life on by eating G any more than I would try Hydroxychloroquine as a pandemic panacea simply because politicians, celebrities, or paid marketers with zero medical knowledge are on TV touting it. 

 

This posts misrepresents the previous statements and completely ignores the fact that NOBODY suggests to roll the dice and eat gluten. 

You are actually rolling the dice every time when you eat out of your house because you know with almost 100% certainty that you will unknowingly be exposed to gluten. In fact, you create a false sense of security but stating that it is possible to keep a gluten-free diet. You can only do that if you never leave your home and cook from 100% raw ingredients which very few people can or want to do. 

GliadinX is not a a miracle treatment and has never been promoted as such and in fact your statements could be hurtful because they are false and can prevent someone to add a an additional level of precaution and therefore are exposed to gluten.  

Your statement about the medical community is completely false. The medical community is slowly but surely accepting the concept of utilizing enzymes to combat contamination. Here is a publication from the University of Chicago Celiac Center that states that GliadinX can break down 1/8 of a slice of bread

https://pubmed.ncbi.nlm.nih.gov/28644353/

Here is another review publication discussing the mechanism how enzymes break down the 33-mer gliadin epitopes (see section 5)

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

Here is one more (and there are many more)

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

Furthermore, the Mayo Clinic is recruiting patients for a gluten-challenge study in combination with an enzyme that is working is a similar way by breaking down the proline-glutamine bindings of the gliadin molecule

https://www.mayo.edu/research/clinical-trials/cls-20438530

Your statements have no scientific basis and can physically hurt someone by not combating almost certain contamination and emotionally hurting someone by perpetuating the constant fear of being helpless against cross-contamination in any social setting. Making references to the current pandemic not only belittles the huge amount of research that has been done for the benefit of so many (which you may or may not have read) but also belittles the current serious situation we are in. 

If you feel that any of these statements are incorrect, please post publications or scientific documentation that would substantiate that. 

 

[DJFL77I]

these trials are dangerous.. you're basically just a guinea pig...

they should be paying people tens of thousands of dollars and additional perks to experiment on themselves

[docaz]

1 hour ago, DJFL77I said:

these trials are dangerous.. you're basically just a guinea pig...

they should be paying people tens of thousands of dollars and additional perks to experiment on themselves

You are suggesting that Dr. Joseph Murray, the the head of the Mayo Clinic who is one of the most respected celiac experts in the world and who is quoted on this site over and over again, is conducting a dangerous study without regard to his patients. Please substantiate your statement so that we can all understand why you think that's the case.

By the way the original AN-PEP studies were performed on healthy volunteers and the food bolus was given in the stomach together with the enzyme and the gluten content was measured with a naso-gastric tube showing that no residual gluten was detected in the small intestine but many complain that it is not valid because the volunteer were healthy. In fact the digestive system works for celiacs and healthy patients in the same way with the only difference that celiacs react to gliadin and healthy people do not. 

It is evident to me that some people do not want something that will help them but want everybody to live in complete social isolation. 

 

 

 

[docaz]

3 hours ago, DJFL77I said:

these trials are dangerous.. you're basically just a guinea pig...

they should be paying people tens of thousands of dollars and additional perks to experiment on themselves

By the way, who should offer tens of thousands of dollar and additional perks to all the people who are exposed to gluten unintentionally. How about to the many that sometimes intentionally cheat because they can not take it anymore to live in a zip-lock bag? 

All medical trials come with risks but before they are started at least in the US, they have to be presented in front of an ethical board and the benefit has to outweigh the risk to start the trial. Without such trials, we would have no medical advancement at all. 

There are people who are willing to take a chance (and yes, every study comes with risks just like the Nexvax study that unfortunately failed) that something might come out of it that can help them and others. My children have a much, much better quality of live which is worth a lot more than tens of thousands of dollars and in fact, I can not put a price high enough on that when I give my kids a kiss just before they leave the house to go out with friends. 

If you want to be 100% gluten-free you can never go to a family event without bringing your own food, you can never let your children go to any social event without bringing their own food (and that's not so enticing to most teenagers), you can never travel to most countries, you can never go to a business meeting, you can never go to a restaurant that is completely gluten-free, you can never trust any processed food in the supermarket. For many this is unbearable and are gladly volunteering for a study that is well designed and is based on solid basic research. 

 

Please feel free to prove me wrong but if you do so, please substantiate your arguments with more than your opinion. 

 

[DJFL77I]

Travel is easy..  as long as you cook for yourself.. I can travel 10,000 miles to Thailand and I know i would be able to cook for myself daily gluten free..  even on a tiny little island like kho samui in the middle of the ocean..  

It's not that hard to eat gluten free... unless you have zero self control . 

 

[docaz]

1 minute ago, DJFL77I said:

Travel is easy..  as long as you cook for yourself.. I can travel 10,000 miles to Thailand and I know i would be able to cook for myself daily gluten free..  even on a tiny little island like kho samui in the middle of the ocean..  

It's not that hard to eat gluten free... unless you have zero self control . 

 

I am very glad that it is easy for you. I am not sure if you travel alone or with others.  I have been on kho samui and it is a wonderful island. For our family before adding enzymes, traveling was a nightmare. We brought all kind of foods with us but it was still very hard. We have three very active kids with all kind of different tastes for food and cooking every single meal while on vacation is not something that we can or want to do. We have taken bus tours through Island where there is not time to cook or cruises for example, where you are not even allowed to cook for yourself and while the cruise lines are very careful, we all know that mistakes happen all the time. 

I think that the term "zero control" underestimates the level of stress necessary to keep a gluten-free diet away from home. 

 

[DJFL77I]

Then just don't take cruises or bus tours.. can still vacation...  

Only time I'd worry about travel is on the plane menu.. they have gluten free option but who knows whats in it.. when I flew to Thailand on emirates I was still not diagnosed a d had no symptoms but I remember seeing gluten free meals.. 

If I ever go back I will just rent a condo with a kitchen and cook for myself

[docaz]

16 minutes ago, DJFL77I said:

Then just don't take cruises or bus tours.. can still vacation...  

Only time I'd worry about travel is on the plane menu.. they have gluten free option but who knows whats in it..

I am making the assumption (and please correct me if I am wrong) that you travel alone and in that case it is much easier.

Well, we do like cruises and guided bus tours. My kids also want to go to camps or other social gatherings or just simply have a sleepover at a friends house. All that is not possible and I think that we can not minimize the emotional impact on not being able to do that without a lot of stress. 

We do not like carrying pots and pans with us and constantly go shopping for the next meals. 

[DJFL77I]

I travel with 1 other.. but ya it's easy for me..

Well then I guess they'll learn from a much earlier age that life ain't usually fair 

[docaz]

2 minutes ago, DJFL77I said:

I travel with 1 other.. but ya it's easy for me..

Well then I guess they'll learn from a much earlier age that life ain't usually fair 

It is true that life is not fair but I am trying to teach them to be kind to others and to be resourceful whenever possible.  They take enzymes and just two days ago the yearly blood tests came out perfect. 

[DJFL77I]

So you're saying they're eating gluten foods sometimes while taking enzyms?

[docaz]

4 minutes ago, DJFL77I said:

So you're saying they're eating gluten foods sometimes while taking enzyms?

It gives us the freedom to eat gluten-free food in situations in which we do not have complete control over the environment. The trip on the picture below, would not have been possible without the enzymes.