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AJS3849

Do enzymes help mitigate inadvertent gluten ingestion?

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I have celiac and have followed a strict gluten-free diet for seven years.  Now that we are retired, my husband and I travel a lot and that means dining out a lot.  I always inform wait staff of my celiac disease and my need to avoid gluten but still occasionally get glutened and suffer the miserable results.  I see ads for enzymes that break down gluten and wonder if they are effective in mitigating the reaction.  I understand that they are not designed to allow celiacs to consume gluten freely, but I would like to be able to have an antidote that will at least make the reaction less severe.  Has anyone found these to be effective in that way?

Edited by AJS3849
Needed to correct incorrect wording.

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They are supposed to make the symptoms shorter and less severe be eliminating some of the gluten. In theory they work, I know when I tried them years ago....I saw no effect, gluten was gluten and I was sick. This is why I am so against them and their marketing scheme and have advocated against them for a long time. PS some people on this board are paid by the companies for referrals, link clicks etc. -_- I just kicked a  hornets nest but this much is true.  I think for the $100 dollar cost of pills, the fact your still doing damage to you intestines or worse, and still get sick regardless they are not wort it. NOW if you take samples well, a NIMA Sensor can be used to detect gluten in food when eating out. Still very expensive, it is HYPER sensitive and will go off often on things less then 20ppm with even the tiniest bit of gluten. It can enable you to test you food and avoid the entire OH they glutened me I am sick, weeks worth of raised antibodies etc.
PS I am a ambassador for NIMA Sensor, but I am not paid or compensated here for sales/purchases etc. I just love how it opened up some foods that were iffy to my diet and I can sometimes try new things with peace of mind.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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I find they do work. I currently use  Enzymedica Digest Spectrum (it does gluten and a bunch of other things). I used to use Enzymedica Gluten Ease but as I got older I like the broader spectrum digestive enzymes better. I find if I do get cross contamination taking 2 will eliminate the symptoms of needing to urgently go to the bathroom right away. If I don't have any on me then I need to go, and go, and go. But if I do then after the 1st time and then I take the pills I'm good. 

If I go to a new restaurant or someplace I am not sure of I try to take them at the beginning of the meal. Then I never know if I got glutened at all. Many times on a trip I just take them before every meal so I don't have to worry about it.

I still seek out the safest restaurants where the personnel seem to know what they are doing and tell them it is a gluten allergy order.

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I think you should look for ones that are fairly new and made by an actual doctor that is doing research on a world wide level.  They are developing one but the clinical trials in the US will make it take a while to get out.  So.... maybe they have released it as a "supplement"?  But it won't be some of the ones that have no real scientific research .


 

 

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i use them whenever i'm not sure or if i feel a sudden mood change after eating.  They do help a lot, but only for small amounts of gluten.  I also purchased a nima sensor.  expensive but worth it. Best thing to do when eating out is to check reviews for celiac safe restaraunts ,most will tell you if they are celiac friendly. also if youi like india food, almost everything is gluten free naturally.  gem of india is now my favorite safest and delicious place to eat.

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On 11/14/2017 at 5:15 AM, Ennis_TX said:

They are supposed to make the symptoms shorter and less severe be eliminating some of the gluten. In theory they work, I know when I tried them years ago....I saw no effect, gluten was gluten and I was sick. This is why I am so against them and their marketing scheme and have advocated against them for a long time. PS some people on this board are paid by the companies for referrals, link clicks etc. -_- I just kicked a  hornets nest but this much is true.  I think for the $100 dollar cost of pills, the fact your still doing damage to you intestines or worse, and still get sick regardless they are not wort it. NOW if you take samples well, a NIMA Sensor can be used to detect gluten in food when eating out. Still very expensive, it is HYPER sensitive and will go off often on things less then 20ppm with even the tiniest bit of gluten. It can enable you to test you food and avoid the entire OH they glutened me I am sick, weeks worth of raised antibodies etc.
PS I am a ambassador for NIMA Sensor, but I am not paid or compensated here for sales/purchases etc. I just love how it opened up some foods that were iffy to my diet and I can sometimes try new things with peace of mind.

What's the benefit of the NIMA Sensor? It's $5.00 per test for food that either already ordered and/or in front of me or I'm at an event and not sure of the contents of the food so want to test it? That's a steep cost to know if I can eat something that I may not come into contact with again. Anything else, I'd have the ingredients list for or be making myself. I'm sure there's something I'm missing....I'm new to this.

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3 hours ago, mommy2x said:

What's the benefit of the NIMA Sensor? It's $5.00 per test for food that either already ordered and/or in front of me or I'm at an event and not sure of the contents of the food so want to test it? That's a steep cost to know if I can eat something that I may not come into contact with again. Anything else, I'd have the ingredients list for or be making myself. I'm sure there's something I'm missing....I'm new to this.

With me I use it differently now days, I take a sample from food I buy not labeled gluten free and test it, NOTE I am talking about order 10-25lbs at a time and testing a bit to make sure the whole batch is "probably safe" In the past there were some foods I used it on to test as I was unsure of (Uptons BBQ. Certain Chips, Spices, Seasonings, Sauces, etc), and when I used to eat out a few times a year...I have not eaten out in over a year so only test some stuff when new shipments come in IE cases of ground meats, huge bags of nut, or seed flours.....I bulk buy for food services I run.

Many people just use them when they are eating out for special occupations or getting something made by others, IE birthdays, weddings, cruises, vacations. I can't Imagine risking my life daily eating out in mixed places and spending extra to test each food on my plate, and sides every day multiple times a day.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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GliadinX (full disclosure...they are a sponsor) Makes an enzyme that has been shown to break down Gluten in the stomach in several studies, and has been mentioned in a publication by Dr. Stefano Guandalini, Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, University of Chicago Celiac Disease Center-Comer Children’s Hospital, Chicago, IL, and was published in Nutrients 2018, 10(6), 755:

 

"12. Treatment of the Extra-Intestinal Manifestations of CD
the only one that is currently on the market is the gluten-specific enzyme, GliadinX (AN-PEP). Unfortunately, it is only capable of detoxifying 0.2 g of gluten or roughly that of 1/8 of a slice of gluten-containing bread. For this reason, it should only be used as an adjunct to the GFD when there are concerns for accidental gluten contamination and in an effort to ameliorate symptoms, not as a replacement for the GFD."


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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On 8/3/2019 at 11:49 AM, mommy2x said:

What's the benefit of the NIMA Sensor? It's $5.00 per test for food that either already ordered and/or in front of me or I'm at an event and not sure of the contents of the food so want to test it? That's a steep cost to know if I can eat something that I may not come into contact with again. Anything else, I'd have the ingredients list for or be making myself. I'm sure there's something I'm missing....I'm new to this.

I have a Nima Sensor - I generally only bring it along for traveling in other countries, where language issues might be a problem.  I will say it saved me one time, and that alone was worth the cost.  The restaurant was absolutely insisting that the meal was gluten free but something on it was questionable, so I tested it  -- saved me from so much pain and difficulty, as we were in a place where finding proper facilities would have definitely been a problem.

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Upfront for full disclosure, I am involved with GliadinX so my comments have to be seen in that light. I am financially benefiting from it (but not really because at this time it is not very profitable and I am fortunate that I do not depend on income from this).

The bottles were never $100 and recently 30 capsule bottles became available for just over $20.

I have worked on GliadinX after two of my children have been diagnosed with celiac disease and they started out with very high tTG numbers. They went on a gluten-free diet and the number greatly improved but still were on the high end of the normal. After they added AN-PEP to eliminate contaminants, their numbers went down to low normal and that for 7 years (because I had access to AN-PEP before it came on the market). The research is solid and here are just a few publications but there are many more https://www.gliadinx.com/publications

I can be accused of trying to benefit financially from this but whenver others can experience the same increase in quality of life as my children (and therefore our entire family) have experienced, I get a satisfaction that goes much beyond money. 

Some are very heavy scientific papers, some are reviews for laymen. Some are on healthy volunteers and one is even with celiac patients (and the reason why the conclusions for that one are very cautious is because the test group and the placebo group did well because the study was not long enough but still there was no damage with a gluten challenge).

One of the studies shows that these particular enzymes work much faster in a more acidic environment and breaks down the gliadin molecule quickly in the stomach. The idea is to catch it before it enters the duodenum where it causes inflammation. GliadinX is the only formulation that has a food grade acid that was one of the ingredients of that study.

There is a lot of well founded skepticism because there are many DPP-IV products which promise a lot and are in fact breaking down a component of the gliadin molecule but not the immunogenic 8 amino-acid sequence that causes the inflammatory reaction. AN-PEP does exactly that because it breaks down the proline bindings of that sequence and that has been proven in clinical and laboratory studies. The clinical studies have been performed on healthy individuals but since the enzyme only act in the stomach and not systemically the results are valid. 

It is important that I emphasize that the enzymes are only designed to help support a gluten-free diet but not to cheat. This is an extra level of safety and for a capsule price between 50 cents to $1 that is not a big cost. Is 50 cents too much for even a potential level of safety when all research is so encouraging? So by not recommending it, are we protecting someone from wasting a Dollar or are we preventing that person from possibly adding an extra level of safety that in the best case helps a lot in the worst case, does nothing? The research is pretty convincing. In addition critics, suggest that this might lead to being careless. I think this is very patronizing. Would we ever say to borderline diabetics that they should not get insulin because they should be more careful with the sugars they eat?

By the way, AN-PEP was accidentally discovered  to break down gluten because it was originally used to make cold brewed beer clear faster and the scientists noticed that after the treatment the beer contained no more gluten. The beer can not be sold as gluten free because it started out with gluten but the gluten level after treatment with AN-PEP is not detectable and there are many studies about that also. 

 

 

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2 hours ago, RKBrumbelow said:

My immune response starts as soon as gluten hits a mucosal membrane, or anything similar, in other words my tongue is the first thing to start to feel the effects. 

unfortunately, it does take a few seconds so I may have several bites before I notice anything. This AN-PEP products will help reduce the initial hit in my case, but with everything else autoimmune going on it is not worth the risk. 
 

my protocol now for gluten exposure is 2 capsules of AN-PEP, 100 mg of cortisol IM and 1 L of d5w in a clysis IV  bag (subQ) with constant glucose and bp monitoring. Again though, 1 my gluten reaction is severe, 2 I am not the average patient. So since every gluten exposure leaves me with more unresolvable damage, I cook and prep all my own food  

Your reaction sounds more like an allergy than Celiac Disease. In celiac disease I don't think you can really even have a reaction to anything that doesn't reach your small intestine. It takes anywhere from 1-3 hours for it get from the stomach to the small intestine before it causes a reaction. I doubt Celiacs will react within seconds, if so  they may be placebo effect. I know for me reaction time depends on how much gluten I get exposed to. A large exposure I will violently vommit about 2.5 hours later. Cross contamination will typically take longer than that and will be headaches and terrible reflux. 

I've found GliadinX to work very nicely for mitigating cross contamination. I haven't used it for  a large exposure yet as I haven't had one since I discovered the product but It definitely isn't a scam like non-AN-PEP gluten products. 


Abdominal Pain/GI symptoms started= ~01/02/2014

Gallbladder out= 02/20/14

tTG IgA Postive= 03/21/14

DX via Biopsy (Marsh 3b)= 04/21/14

Celiac Antibodies within Normal range(Gluten free diet)= 10/23/2014

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Didn't in tend to be condescending if that's how it came off. I'm just going based on the science of a celiac reaction. As far as I've been able to find there's no proof that a celiac can react to gluten that hasn't reached the small intestine. I'm open to being proven wrong but I haven't seen anything yet that indicates this is possible. 

I only mentioned it because you are new to the site and we get a lot of folks that are completely new to celiac disease and come here relatively uneducated about it. I'm not discounting that you're reacting to the food that as gluten in it, just that it may not be celiac disease causing that reaction given how quickly you react and from just touching it. It just sounds more like an allergy than celiac disease, perhaps you have both or maybe there's something else in those foods that causes that sort of reaction. 

Placebo effect maybe be a poor term in this case but what I meant was that if you realize you ate something with gluten in it, you may have a reaction because of the anxiety. It's well documented that people can experience symptoms of a disease if they have it. So I'm just saying that the stress/anxiety knowing you've been exposed may cause symptoms early. 


Abdominal Pain/GI symptoms started= ~01/02/2014

Gallbladder out= 02/20/14

tTG IgA Postive= 03/21/14

DX via Biopsy (Marsh 3b)= 04/21/14

Celiac Antibodies within Normal range(Gluten free diet)= 10/23/2014

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Celiac disease is very clearly defined and is triggered by the gliadin molecule leaking into the lining of the small intestine. It then causes an inflammatory reaction that then causes a multitude of secondary issues.

That said, many people react to gluten or gluten containing foods and products such as make-up or soap for example but this by definition is something other than celiac disease.

Of course, someone can have celiac disease and at the same time have a separate sensitivity or allergy to gluten. (By the way, many sensitivities are now being attributed to fructans which are commonly found in gluten-containing foods and therefore FODMAP diet seems to help for many gluten sensitive people)https://www.vox.com/2017/11/21/16643816/gluten-bloated-carb-wheat-fructan-problem-fodmaps

An enzyme does not prevent any of these reactions because enzymes are not anti inflammatory and do not have any systemic action. All they do, is break down the gliadin molecules in smaller pieces so that they normally occurring enzymes (pepsin) in the body can further digest them before they can leak in the small intestine. Given that enzymes break down gliadin, they can not prevent or cure celiac disease but they can help keeping a more gluten-free diet in situations that have started this thread where someone decides to eat in a restaurant. Some people are comfortable taking their own food wherever they go but for some that's not an option and in that case, AN-PEP has proven over and over again that it is helpful and not one single study suggested that it is damaging or contraindicated. 

Edited by docaz
working on spelling and grammar

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9 minutes ago, docaz said:

Celiac disease is very clearly defined and is triggered by the gliadin molecule leaking into the lining of the small intestine. It then causes an inflammatory reaction that then causes a multitude of secondary issues.

That said, many people react to gluten or gluten containing foods and products such as make-up or soap for example but this by definition is something other than celiac disease.

Of course, someone can have celiac disease and at the same time have a separate sensitivity or allergy to gluten. (By the way, many sensitivities are now being attributed to fructans which are commonly found in gluten-containing foods and therefore FODMAP diet seems to help for many gluten sensitive people)https://www.vox.com/2017/11/21/16643816/gluten-bloated-carb-wheat-fructan-problem-fodmaps

An enzyme does not prevent any of these reactions because enzymes are not anti inflammatory and do not have any systemic action. All they do, is break down the gliadin molecules in smaller pieces so that they normally occurring enzymes (pepsin) in the body can further digest them before they can leak in the small intestine. Given that enzymes break down gliadin, they can not prevent or cure celiac disease but they can help keeping a more gluten-free diet in situations that have started this thread where someone decides to eat in a restaurant. Some people are comfortable taking their own food wherever they go but for some that's not an option and in that case, AN-PEP has proven over and over again that it is helpful and not one single study suggested that it is damaging or contraindicated. 

Yup, and I expect most of those reactions happen because the makeup/lip balm..ect ends up in their mouth in inadvertently and then into the GI tract. 


Abdominal Pain/GI symptoms started= ~01/02/2014

Gallbladder out= 02/20/14

tTG IgA Postive= 03/21/14

DX via Biopsy (Marsh 3b)= 04/21/14

Celiac Antibodies within Normal range(Gluten free diet)= 10/23/2014

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