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Charli61

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Charli61 Apprentice

Hi all,

I just ordered a bottle of GliadinX capsules, has anyone else tried them?  I am both excited at the thought of being able to order French fries etc. without concern of CC and terrified to try!

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Ennis-TX Grand Master

We had a major discussion on this product a few weeks ago. It will not help you much if you have actual celiac. As it is a autoimmune disease, your body is reacting with antibodies to the gluten proteins. This starts before it even gets to the gut, as soon as you body detects teh gluten in the mouth and stomach it starts producing the antibodies that will attack your body. Now the GliadinX might help with the prolonged abdominal discomfort, but it will not stop the damage to your villi. DO NOT think of it as some miracle pill. You should still avoid gluten, hell your better off buying test kits to test your food eating out then the gliadin pills.

Do this at your own risk but please try not to confuse new comers with this product.  

YES i have a personal vendetta against such products using enzymes to make gluten "Safer" for celiacs  I fell for the same BS years ago.

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kareng Grand Master
44 minutes ago, Ennis_TX said:

We had a major discussion on this product a few weeks ago. It will not help you much if you have actual celiac. As it is a autoimmune disease, your body is reacting with antibodies to the gluten proteins. This starts before it even gets to the gut, as soon as you body detects teh gluten in the mouth and stomach it starts producing the antibodies that will attack your body. Now the GliadinX might help with the prolonged abdominal discomfort, but it will not stop the damage to your villi. DO NOT think of it as some miracle pill. You should still avoid gluten, hell your better off buying test kits to test your food eating out then the gliadin pills.

Do this at your own risk but please try not to confuse new comers with this product.  

YES i have a personal vendetta against such products using enzymes to make gluten "Safer" for celiacs  I fell for the same BS years ago.

I agree that's this isn't a way To cheat and eat Gluten if you have Celiac.  These are supplements - not medication, so who knows what they do or don't do.  There are currently medicines in actual FDA medical trials that look like they may degrade gluten in the stomach, before it reaches   the small  Intestine.  

The gluten antibody reaction does not happen in your mouth, or your nose, or your stomach - it happens in the small intestine.  So, if we can destroy/ degrade/zap gluten in the short time it is in the stomach, that would be helpful.  

 

 

 

 

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Ennis-TX Grand Master
6 minutes ago, kareng said:

The gluten antibody reaction does not happen in your mouth, or your nose, or your stomach - it happens in the small intestine.

Are you sure it does not start at least some kind of production in other areas? I can get sores in my mouth, lymph nodes normally have a reaction within 30mins of consuming something with a flour or breading. I also notice issues with the fog, anxiety etc. with inhaled flours sometimes if I go by the bakery some times at stores.  Now the gut issues and other issues take a hour or so after consuming before it gets real bad for me. Those are the truly evil ones that lay me out for hours, with vomiting, motion control issues, and D or C.

I can see the anxiety part perhaps being a psychological manifestation. But the rest are obviously some kind of triggered reaction to it. Perhaps it depends on ones sensitivity to gluten or mine for all I know might be a combination with a allergy to it. (Testing is out of date for my allergies by 4 years)

Sorry for any misinformation due to my incompetence in the matter and assumptions based on my personal reactions.

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kareng Grand Master
2 hours ago, Ennis_TX said:

Are you sure it does not start at least some kind of production in other areas? I can get sores in my mouth, lymph nodes normally have a reaction within 30mins of consuming something with a flour or breading. I also notice issues with the fog, anxiety etc. with inhaled flours sometimes if I go by the bakery some times at stores.  Now the gut issues and other issues take a hour or so after consuming before it gets real bad for me. Those are the truly evil ones that lay me out for hours, with vomiting, motion control issues, and D or C.

I can see the anxiety part perhaps being a psychological manifestation. But the rest are obviously some kind of triggered reaction to it. Perhaps it depends on ones sensitivity to gluten or mine for all I know might be a combination with a allergy to it. (Testing is out of date for my allergies by 4 years)

Sorry for any misinformation due to my incompetence in the matter and assumptions based on my personal reactions.

I think,  if you could read  real Medical info about Celiac, it would say it's a reaction in the small intestine. When I went to the International Celiac symposium, the lectures about the drugs to break down gluten weren't to break it down on your plate! Lol  they were talking about keeping it from your small intestine.  

You may be having allergic reactions, maybe the gluten is passing thru your stomach quickly, maybe it's something else?  Our own experiences and assumptions about them do not make a " scientific fact".  I think you have recently found that you have some other medical diagnoses that may be coming into play?

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knitty kitty Grand Master

I agree with Ennis.  Digestion starts in the mouth. Enzymes in saliva get right to work breaking down gluten in the mouth.  Some of these enzymes are produced by the bacteria living in one's mouth.  

Here's a really cool article:   

Open Original Shared Link

This article describes a study of the oral bacteria in people with Celiac Disease as compared to non-celiac people.  Celiacs have more bacteria that secrete gluten digesting enzymes.  

Here's a quote:

"While the pathophysiological link between the oral and gut microbiomes in celiac disease needs further exploration, the presented data suggest that oral microbe-derived enzyme activities are elevated in subjects with celiac disease, which may impact gluten processing and the presentation of immunogenic gluten epitopes to the immune system in the small intestine. IMPORTANCE Ingested gluten proteins are the triggers of intestinal inflammation in celiac disease (celiac disease). Certain immunogenic gluten domains are resistant to intestinal proteases but can be hydrolyzed by oral microbial enzymes. Very little is known about the endogenous proteolytic processing of gluten proteins in the oral cavity. Given that this occurs prior to gluten reaching the small intestine, such enzymes are likely to contribute to the composition of the gluten digest that ultimately reaches the small intestine and causes celiac disease. "

Wow!  Are the bacterial enzymes producing weird half digested gluten molecules that trigger celiac disease, or are they helping?  Can't wait for follow up studies on this subject!   So exciting in an "Amy Farrah Fowler/Sheldon Cooper" sorta way... but I digress...

Airborne flour bothers me, too.  The sinus passages, eyes, lungs, mouth and throat all can absorb airborne antigens directly from the environment into the bloodstream. Once there, the antibodies attack, just the same as if the antigen was eaten and absorbed into the bloodstream from the digestive tract. 

And, no, the GliadinX pills won't work.  

 

 

 

 

 

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ravenwoodglass Mentor
10 hours ago, Ennis_TX said:

 This starts before it even gets to the gut, as soon as you body detects teh gluten in the mouth and stomach it starts producing the antibodies that will attack your body.

Celiac is an autoimmune disease not just a gut disorder.  If one doubts that they have only to look at folks with DH or Ataxia that don't (yet) have GI presentations. The antibodies start to be formed when gluten comes into contact with mucous membranes. There was research being done trying to find a way to diagnose us without having to do a gluten challenge. They used a swab either in the cheek or rectum (buccal and rectal challenge) and then biopsied the area a few hours later and were able to detect the antibodies. I don't have time to look for those research studies but they are there and were peer reviewed.  If I can find a copy of the paper I wrote in college about this I will post the references I used. I know one was the NIH but not sure of the others. Maybe some of you folks that enjoy and have time for the research might be able to find info on the studies. I might have even posted about this and provided links years ago.  At he time I thought it was great they were looking for ways that were less barbaric to diagnose folks that had already gone gluten free.

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Posterboy Mentor
On 3/18/2017 at 4:50 PM, Charli61 said:

Hi all,

I just ordered a bottle of GliadinX capsules, has anyone else tried them?  I am both excited at the thought of being able to order French fries etc. without concern of CC and terrified to try!

Charli61,

I think for most Celiac's we are afraid that it would do more harm than good.

See this thread by Jefferson Adams that asked the same question about Celiac "drugs" in the pipeline.

https://www.celiac.com/articles/24099/1/Why-All-the-Hate-for-Celiac-Disease-Drug-Treatments/Page1.html

Unless we can be 100% sure we are not doing damage to our Small Intestine it isn't worth the effort/risk for most Celiac's.

If you are a NCGS then knock yourself out.

If I was traveling and knew it might lessen might  a reaction from being "glutened" by the waiter then I might be glad to try it as a  fall back but not as a first line of dense and press my luck and end up hurting my GI tract again.

When full gut recovery can take up to two year's is it really worth the effort to cheat with french fries when you can go to Five Guys and get gluten free fries! instead.

see this link https://www.celiac.com/articles/24693/1/Full-Gut-Recovery-from-Celiac-Disease-Can-Take-Up-to-Two-Years/Page1.html

If we are lucky we have only messed up our insides for 6 months.

just my two cents worth.

posterboy,

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Charli61 Apprentice

Hi, I only got them for the odd time I  want to eat out, maybe have french fries even without a dedicated fryer.  I live in a small city in BC Canada and there aren't a lot of choices.  I don't intend to take them and intentionally eat gluten.  I am far too sensitive for that.  I just thought that if I could take one or two and maybe just maybe not get CC on my gluten-free food it would be worth it. 

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Charli61 Apprentice
On 3/18/2017 at 3:45 PM, Ennis_TX said:

We had a major discussion on this product a few weeks ago. It will not help you much if you have actual celiac. As it is a autoimmune disease, your body is reacting with antibodies to the gluten proteins. This starts before it even gets to the gut, as soon as you body detects teh gluten in the mouth and stomach it starts producing the antibodies that will attack your body. Now the GliadinX might help with the prolonged abdominal discomfort, but it will not stop the damage to your villi. DO NOT think of it as some miracle pill. You should still avoid gluten, hell your better off buying test kits to test your food eating out then the gliadin pills.

Do this at your own risk but please try not to confuse new comers with this product.  

YES i have a personal vendetta against such products using enzymes to make gluten "Safer" for celiacs  I fell for the same BS years ago.

Thank you, I wish I had asked BEFORE I spent $100 on the bottle.  I just thought for the odd time  I am out and the only choice is french fries and no dedicated fryer I would maybe cut down the risk of CC.

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  • 1 month later...
JMR1104 Newbie

Hello,

I am biopsy diagnosed celiac.  I have had celiac for 15 years.  I have used GliadinX several times.  It has been a lifesaver.  I have been able to take it when I eat out just in case a restaurant makes a mistake.  Most recently, I traveled to Peru.  I took GliadinX with my meals and ate regular chocolate cake, bread on two different days and even pasta.  NO problems.  I feel great!

The doctor who developed this has lots of REPUTABLE scientific research behind it.  He worked with a pharmaceutical company to develop GliadinX's unique delivery system.  It has the highest dose of the enzyme (that breaks down gliadin in the gut) and it has a unique delivery system of citric acid which makes sure the acidity level is right for the enzyme to work in the stomach. You may see claims for other gluten enzymes on the market but none have the citric acid delivery system and scientific research to prove they work.   The doctor personally tested it on family members and is well regarded in the medical community.  Please check out the site and the studies on the site for more information! Open Original Shared Link

 

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Ennis-TX Grand Master
On 5/2/2017 at 8:31 PM, JMR1104 said:

Hello,

I am biopsy diagnosed celiac.  I have had celiac for 15 years.  I have used GliadinX several times.  It has been a lifesaver.  I have been able to take it when I eat out just in case a restaurant makes a mistake.  Most recently, I traveled to Peru.  I took GliadinX with my meals and ate regular chocolate cake, bread on two different days and even pasta.  NO problems.  I feel great!

The doctor who developed this has lots of REPUTABLE scientific research behind it.  He worked with a pharmaceutical company to develop GliadinX's unique delivery system.  It has the highest dose of the enzyme (that breaks down gliadin in the gut) and it has a unique delivery system of citric acid which makes sure the acidity level is right for the enzyme to work in the stomach. You may see claims for other gluten enzymes on the market but none have the citric acid delivery system and scientific research to prove they work.   The doctor personally tested it on family members and is well regarded in the medical community.  Please check out the site and the studies on the site for more information! Open Original Shared Link

 

Nice it works for better then me,  I recall  trying it.....still sick for hours puking. And has given me a personal vandetta against this company and it making people think it is a "Miracle Pill" that allows you to eat gluten. I will keep advocating against it til they  state it is not safe for people with celiacs to use this and eat gluten foods. NO ONE should suffer the thoughts of thinking oh lets eat gluten and this pill will save me then damage their intestines doing so and set themselves back.   IT HELPS A BIT, not a miracle cure pill that will allow you to eat what ever, good for chances of CC.  YOU WILL STILL damage your intestines eating gluten with this.

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Jmg Mentor
On 5/3/2017 at 2:31 AM, JMR1104 said:

Most recently, I traveled to Peru.  I took GliadinX with my meals and ate regular chocolate cake, bread on two different days and even pasta.  NO problems.  I feel great!

Hi and welcome :)

I must say I read your post with some surprise. Even understanding the science behind the product I'm surprised you've used it for outright gluten consumption as opposed to safeguarding against possible contamination. Can I ask what your usual gluten symptoms are and how sensitive you'd assess yourself as? I'd also be interested in what if any side effects you noticed. 

For background, I'm not diagnosed celiac but react to gluten. I've been considering having these in case I'm travelling overseas and have difficulty getting dedicated gluten-free meals. I'd not thought of actually ordering regular bread or pasta!

 

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JMR1104 Newbie

Hello,

I took GliadinX everytime I ate out on my trip in Peru.  Many times they promised gluten-free and it was not.  I know for certain the chocolate cake and pita bread were not gluten-free.  The tour guide apologized the next day on both. I asked many questions due to suspision.  I did not get sick at all. I am so grateful I was able to do this trip as I have not left the country in 20 years for fear of traveling and being exposed to gluten. My kids have celiac as well and I am extremely cautious.   I think dining out protection is the perfect use for GliadinX.    I think it's best and safest for dining out where we never can really be sure what is in our food.  Thanks for asking.  Glad I could clarify.:)

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Gemini Experienced
55 minutes ago, JMR1104 said:

Hello,

I took GliadinX everytime I ate out on my trip in Peru.  Many times they promised gluten-free and it was not.  I know for certain the chocolate cake and pita bread were not gluten-free.  The tour guide apologized the next day on both. I asked many questions due to suspision.  I did not get sick at all. I am so grateful I was able to do this trip as I have not left the country in 20 years for fear of traveling and being exposed to gluten. My kids have celiac as well and I am extremely cautious.   I think dining out protection is the perfect use for GliadinX.    I think it's best and safest for dining out where we never can really be sure what is in our food.  Thanks for asking.  Glad I could clarify.:)

If you have been a diagnosed Celiac for 20 years, then your reactions to gluten may have changed and become less severe.  I have been diagnosed for 12 years and there have been big changes to my reactions since diagnosis.  At first, they were debilitating with severe GI issues. Fast forward 12 years and, I admit to only being glutened 2 times in the past 6 years because I am THAT careful, and my gut reactions are minor, compared to when first diagnosed. However, I have severe neuro issues now that can last up to week.

The reason I say this is because you may have been gluten-free and careful for so long, your reactions are not the same but damage is still being done. I cringed when I read you ate cake and bread. Did the tour guide or restaurant tell you it was gluten-free, so this is why you consumed it?  I am glad you did not feel sick but I don't think I would do that when traveling. But I also would like to go to Peru also.

I generally strip it down when traveling to foods that are most likely not to be cc'd or have any gluten, unless the restaurant is dedicated or is owned/operated by Celiac's.  It has worked pretty well for me on a number of trips.

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