Nima testing tool

[MolD]

 Can someone tell me whether they’ve had success using the Nima food testing tool—And any other ways you test for gluten in your food?

[kareng]

Home testing for gluten is not very accurate for a lot of reasons.  One is that people don’t prepare samples or use the tests correctly. 
 

Here is some info about the Nima 

https://www.glutenfreewatchdog.org/news/gluten-free-watchdogs-updated-position-statement-on-the-nima-sensor-for-gluten/

 

joining the gluten-free watchdog is a good way to find out about the gluten-free status of foods.  They test many different ones in a lab. 

[Scott Adams]

I would not recommend that organization as they claim that Cheerios and other General Mills cereals that use gluten-free oats are not gluten-free, but don’t provide evidence to back this claim up. Years ago they had a blog post that said that they would make their evidence on this public “soon,” then never released it. 

Nima’s app is the best way to get free info on their test results which is posted by hundreds of Nima owners.

[cyclinglady]

Why not take advice from a celiac disease foundation/non-profit?  

https://www.celiac.ca/cca-statement-nima-gluten-sensor/

https://www.beyondceliac.org/celiac-news/the-nima-sensor-a-portable-gluten-testing-device/

Me?  I think it is better to ask questions and talk to restaurant manager or chef rather than ordering my food and trying to test it while everyone else is eating.  This “not-labeled-medical-device” has not gone under rigorous studies like a glucose meter or other medical devices.  It is not FDA approved.  

Studies indicate that gluten is getting into our diets despite our best efforts.  The figure is as high as 60 to 70% of celiacs not healing.  I think we rely way too much on restaurant and processed foods.  We need to keep advocating for our government to help protect us.  Like it would be nice if we knew for sure which drugs are gluten free or not.  But Congress is not interested.  Another big corporation pay-off?  

I totally support the Gluten Free Watchdog.  Like Consumer Reports which tests products, your subscription covers the cost for the GFW to test products that subscribers request.  Unfortunately, only a few products are tested each month.  I wish more people would support her cause.  Trisha also advocates for celiacs by working with the FDA.  

This 8th grader did a science project on Cherrios.  I think she did a good job.  It certainly makes you wonder if Cherrios are safe.  I think not.  I am worried that General Mills needs to get their money out of their mechanical sorting machine.  I think those mechanically-sorted oats are being sold to small gluten-free manufacturers.  Just a theory.  

https://atlantajewishtimes.timesofisrael.com/8th-graders-celiac-warning-gluten-in-cheerios/

I rarely eat out and mostly at gluten-free dedicated restaurants.  The exception is on a cruise where everyone gets to know me.  I also try to avoid processed foods.  This strategy has worked for me.  My last endoscopy revealed healed and healthy villi.  My celiac disease is in remission.  I still eat out with friends.  I just order a drink, enjoy their company and remain well.  

Buyer beware or to each his own?  Unfortunately, you have to figure this out on your own.  

 

[Scott Adams]

I would recommend enzymes for anyone not healing. Take them before meals and they should handle small amounts of contamination. GliadinX is a good one, and sponsors this site, but did not pay me to mention them.

[cyclinglady]

7 hours ago, Scott Adams said:

I would recommend enzymes for anyone not healing. Take them before meals and they should handle small amounts of contamination. GliadinX is a good one, and sponsors this site, but did not pay me to mention them.

Not to be mean, but can you really recommend a product that is not recommended by any celiac disease research center or non-profit celiac disease support organization?  Maybe they might be helpful for those who are gluten free as a means of losing weight or a FODMAP issue.  But in that case, gluten does not cause them any serious  harm anyway.....

https://nationalceliac.org/celiac-disease-questions/gliadinx-product-digestive-enzyme-supplement/

https://celiac.org/about-the-foundation/featured-news/2015/08/study-demonstrates-current-enzyme-supplements-for-celiac-disease-ineffective/

Enzymes might be okay for those who do not have celiac disease:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6143542/

https://www.medicalnewstoday.com/articles/317341.php#1

I know we are not experts or doctors on this forum, but we should at least follow current celiac disease treatment guidelines.  If you meant that the “gluten” enzymes are only for those without celiac disease (as the manufacturer implies), then please be more clear.  

(The manufacturer of GliadinX has no published reports on their website demonstrating that their product is effective in celiac disease patients by preventing an autoimmune response.   It seems it can work in vitro (test tube) in breaking  down gluten, but all their published reports indicate that a trial must be done celiac patients — real world.)

While these enzymes may not cause harm, they will not prevent a celiac disease flare up or help heal from celiac disease.  A gluten free diet is ONLY treatment for celiac disease at this time.  

 

[Mirilu]

My daughter has Celiac disease and has been using a Nina sensor for the past two and a half years. I am a huge supporter of the sensor and feel like it has made a big difference in my daughter’s quality of life, and has certainly saved her from getting very sick in many situations. 

A lot of the negative reviews about the sensor, including the Canadian Celiac Association’s statement against the Nima sensor, make it seem like using it puts you in an either/or position. Either I use discretion, ask tons of questions and do everything in my power to minimize my risk when eating out or eating manufactured products, or I use my Nina sensor and rely on a result that isn’t foolproof. Nima has always taken the position that using the sensor to test a product provides an additional data point in making a decision about whether a food is safe or not. 

Before we purchased the sensor I read all of the information on Nima’s website as well as all of the positive and negative reviews. We went in with our eyes open, knowing that the sample we test might not represent the entire dish and therefore might still be unsafe. However we have not changed our previous behavior of asking all of our questions to ensure that we feel comfortable ordering that dish in the first place, and trusting that the procedures are in place to ensure it is being made in as safe a manner as possible. We then use the test as a last step before she eats it. We have also decided that we will err on the side of caution, knowing that we might get a “gluten found” test result even if the amount is less than 20ppm. The 20ppm standard was set based on the value of gluten that could reliably be detected at the time standards were set for what “gluten free” meant. To us, a 19ppm result is no safer than a 20 or 21ppm result, so we are ok with rejecting anything that comes back with discernible gluten in it. If you are not ok with that, then the Nina sensor might not be for you. 

I could give you many examples of times that we have called a restaurant in advance to discuss if they could accommodate our needs, spoken with the chef to order our meal, and done all of the things that are recommended to people to make sure the risk of eating out is minimized to a point that we feel confident in the food we will be getting, only to have the result test positive for gluten. It is always difficult starting the conversation with the manager or chef after that point, but the outcomes have been illuminating. In one case the head chef found out that whenever the kitchen got too busy the dedicated gluten free fryer was used to handle the non gluten free overflow. He was very thankful that he was able to uncover what was a clear lack of understanding by the kitchen staff regarding allergen protocols. We have been pleasantly surprised by the interest shown in many restaurants to figure out why there might have been gluten found in the food, and in most cases positive changes came as a result. From our perspective we have learned a lot from the type of response we receive, and are much more likely to return to the restaurants that try to make it right than the ones that are dismissive of our concerns. 

Without making this response too much longer than it already is, I want to share with you our anecdotal experience using the Nima sensor around the world. 

- We have almost no “gluten found” results in countries that hold restaurants to a higher standard when it comes to allergen protocols. In the UK and Australia we are often met with incredulous looks when asking our barrage of questions before ordering in restaurants, with the response being, “Of course we take all of those precautions, or it wouldn’t actually be gluten free.” Our experience in N America has been that restaurants cater to a level they call “gluten friendly”, and despite going through the same precautions here, our tests are at about the 50/50 level for safety. 

- Baked goods and take-out pizza from non-dedicated gluten-free providers are close to 100% gluten found for us (again only in N America) to the point that we rarely even try anymore, not wanting to waste the capsules. 

Obviously, everyone is entitled to decide for themselves what level of risk they are willing to accept, as well as to what lengths they are willing to go to protect themselves. This is what works for our family, but only because we don’t use it to replace research, common sense and good judgement, rather to enhance it. 

[Rob S.]

I agree with Mirilu above.

I have a NIMA unit.  When I first got it, I tested everything. I also wrote to companies and scoured their web sites, just as everyone else on here has done. Over time, as I became comfortable with certain products, the frequency of testing dropped.

The same is true of restaurants. When I go to a restaurant for the first few times, like all of you, I question the wait staff and chef. I also test everything. After a few times of success at one place, I may fell comfortable in not testing.

I have discovered quite a few places which talked the talk, but could not walk the walk, i.e., despite knowing what to do, they were unable to transfer that knowledge into safe practice.  One of these was a restaurant that claimed to be entirely gluten free: Three different meals, three failures.

I travel quite a bit and have to say that it is a big help on the road.

[Fenrir]

Personallyu

On 1/15/2020 at 10:27 PM, cyclinglady said:

Not to be mean, but can you really recommend a product that is not recommended by any celiac disease research center or non-profit celiac disease support organization?  Maybe they might be helpful for those who are gluten free as a means of losing weight or a FODMAP issue.  But in that case, gluten does not cause them any serious  harm anyway.....

https://nationalceliac.org/celiac-disease-questions/gliadinx-product-digestive-enzyme-supplement/

https://celiac.org/about-the-foundation/featured-news/2015/08/study-demonstrates-current-enzyme-supplements-for-celiac-disease-ineffective/

Enzymes might be okay for those who do not have celiac disease:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6143542/

https://www.medicalnewstoday.com/articles/317341.php#1

I know we are not experts or doctors on this forum, but we should at least follow current celiac disease treatment guidelines.  If you meant that the “gluten” enzymes are only for those without celiac disease (as the manufacturer implies), then please be more clear.  

(The manufacturer of GliadinX has no published reports on their website demonstrating that their product is effective in celiac disease patients by preventing an autoimmune response.   It seems it can work in vitro (test tube) in breaking  down gluten, but all their published reports indicate that a trial must be done celiac patients — real world.)

While these enzymes may not cause harm, they will not prevent a celiac disease flare up or help heal from celiac disease.  A gluten free diet is ONLY treatment for celiac disease at this time.  

 

Well, actually there are plenty of studies showing the ingredients in GliadinX in fact does break down gluten by 50-85% before it reaches the small intestine. I believe the reason Scott recommends using it when you are having issues after going gluten free is the help ease the symptoms until you can find the source of gluten you may be getting exposed to but haven't pin pointed it yet. I don't think it's an unreasonable recommendation, if you're new to gluten-free diets and dealing with cross contamination you can make a lot of mistakes. These sorts of supplements are not going to help with a large exposure but may help reduce the effects of a cross contamination. I would personally have loved to know about this when I was first starting out because I was still learning. 

I understand that you may choose to rely only on the major celiac organizations for direction but also at the same time you should realize they are always going to be on the very cautious side of things. I think if you are using it as a recovery aid, opposed to a means of eating gluten safely, it does what it's supposed to do and is proven in multiple studies. 

 Also, in the article you posted it says :

“The AN-PEP enzyme has been developed as a dietary supplement that in conjunction with a gluten-free diet may help subjects intolerant to gluten to digest unintended dietary gluten. Despite these promising results, the data does not prove that AN-PEP allows subjects intolerant to gluten to ingest gluten safely.”¹

[Fenrir]

Also, the same logic people use against using enzymes could be applied to the Nima device. The Nima device has many issues and you are still possibly being exposed to gluten. Like enyzmes, the Nima device doesn't replace properly implementing gluten safe measures but people will use both outside of their applicable purposes and get exposed as a result. 

Both are tools they may have a use in certain situations. However, if you take enzymes thinking you can now eat gluten safely or you use the Nima device to test everything and deem everything negative gluten free you're likely going to have some bad experiences. 

[Scott Adams]

I am not sure what you mean by "The Nima device has many issues" as the device very accurately measures whatever you put into it. The issue is not the device, but perhaps the possibility that some of the food you didn't put into the test has gluten in it. The device works very well, and is only designed to give you more info to make a choice, rather than having less info.

The enzymes mention work well for surprisingly large amounts of cross contamination. That said, celiacs should try to avoid such contamination, but certainly if you travel or have to eat away from home taking these enzymes would be be far better than not taking them. Likewise, testing with a Nima device will give you more info than not testing with it.

[Fenrir]

28 minutes ago, Scott Adams said:

I am not sure what you mean by "The Nima device has many issues" as the device very accurately measures whatever you put into it. The issue is not the device, but perhaps the possibility that some of the food you didn't put into the test has gluten in it. The device works very well, and is only designed to give you more info to make a choice, rather than having less info.

The enzymes mention work well for surprisingly large amounts of cross contamination. That say, celiacs should try to avoid such contamination, but certainly if you travel or have to eat away from home taking these enzymes would be be far better than not taking them. Likewise, testing with a Nima device will give you more info than not testing with it.

I didn't mean the device itself is faulty just that even if used properly it can give you false negatives. The comparison is that both are effective but you can still have a reaction using them. 

Most of the problem with using the Nima is that if the piece of food you put in there doesn't have gluten in it, it will be negative but another piece for a different area of the food could have gluten. 

My main point is neither of them should be used to replace proper gluten avoidance methods via knowledge of possible sources of gluten. I think both are good, particularly for people new to eating gluten-free because you don't have the base of knowledge yet that you need in order to be strictly gluten-free. 

I wouldn't be comfortable at this point (going on 6 years gluten-free) using Nima VS my knowledge. One exception is if I'm going somewhere to eat that i'm not 100% sure on how they handle gluten-free in their kitchens. In that case, I would do my best to make sure they understand about cross contamination and then maybe I would also test with Nima and use the enzyme just in case. However, this many years down the road, unless I'm traveling somewhere knew I already know where I can eat. 

[Scott Adams]

I eat out regularly because it's a part of life too important for me to give up. I also take precautions, but never fully trust what anyone tells me at restaurants. I just take enzymes before eating, and I've not had issues. I likely have gotten contamination, which is why I took the enzymes.

[Scott Adams]

@kareng the articles you cite against GliadinX really just say that you shouldn’t use them in order to knowingly eat gluten, which is what the maker says.

One of the organizations you cite, formerly the Celiac Sprue Assoc., famously said sorghum and quinoa were not gluten free and safe for celiacs, and held on to this position for over 10 years. Celiac.com disputed that based on science.

You often cite the Chicago Celiac Center...

The quote below was made 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.”

Last, read the science on the enzymes:

Sources: Scientific publications on AN-PEP enzymes:

• Extra-Intestinal Manifestation of Celiac Disease in Children. Nutrients 2018, 10(6), 755; doi:10.3390/nu10060755
• Efficient degradation of gluten by a prolyl endoprotease in a gastrointestinal model
• Enzymatic gluten detoxification: the proof of the pudding is in the eating!
• Highly efficient gluten degradation with a newly identified prolyl endoprotease: implications for celiac disease
• Degradation of gluten in wheat bran and bread drink by means of a proline-specific peptidase

[Ennis-TX]

I am a fan of both products but use them a bit differently. I do not eat out anymore except at Across the Pond up in North Richland Hills where the owner has celiac in the family.

The way I use the Nima is to test new products I am trying packaged, like a new brand of a baking ingredient, spice, marinade, etc. Also always test a bit from bulk orders like 25-50lb bags of coconut or almond flour. Few times I have suspected something got me with gluten, I took a bit of everything I ate that day, threw it in a blender with a bit of water, and tested the paste for reassurance. The capsules are too expensive to test everything.

GliadinX I use when I do eat out at that one restaurant, or when I use kitchen somewhere else even with my own pans/utensils (OCD since I have gotten sick from flour on a counter or residue from a fridge handle in shared kitchens). I also use it when I try hemp proteins, as they have a high chance of minor CC (yes I use certified ones but ran into some that tested for gluten in the past and just do not trust them) or anything new for that matter.
I honestly need to purchase another bottle soon but am low in funds.


 

[kareng]

5 hours ago, Scott Adams said:

@kareng the articles you cite against GliadinX really just say that you shouldn’t use them in order to knowingly eat gluten, which is what the maker says.

One of the organizations you cite, formerly the Celiac Sprue Assoc., famously said sorghum and quinoa were not gluten free and safe for celiacs, and held on to this position for over 10 years. Celiac.com disputed that based on science.

You often cite the Chicago Celiac Center...

The quote below was made 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 celiac disease
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.”

Last, read the science on the enzymes:

Sources: Scientific publications on AN-PEP enzymes:

• Extra-Intestinal Manifestation of Celiac Disease in Children. Nutrients 2018, 10(6), 755; doi:10.3390/nu10060755
• Efficient degradation of gluten by a prolyl endoprotease in a gastrointestinal model
• Enzymatic gluten detoxification: the proof of the pudding is in the eating!
• Highly efficient gluten degradation with a newly identified prolyl endoprotease: implications for celiac disease
• Degradation of gluten in wheat bran and bread drink by means of a proline-specific peptidase

What?  I only gave one link to something about issues with the Nima sensor.  I didn’t put anything  about GliadinX.  Why are you attacking me?     I believe I was actually on- topic with my response
 

I was actually there a few years ago when the research was presented.  I don't believe I have said anything against it since then and I can’t see where I said anything about it in this thread. 
 

and , yes, I do quote the univ of Chicago a lot.  It’s because they do Celiac research.  They are one of the few places with easy to access and understand  Celiac information.  It’s very hard for most people, including some who post them, to read a real scientific paper and understand it.  

Edited January 23, 2020 by kareng

[GFinDC]

I take CVS Me and My Gluten Assist when eating out.  And sometimes some Biocor DPP-IV.  I think it makes sense to be a little proactive about possible cross-contamination.  Even if the place is usually safe.  I think both these enzymes can help break down gluten in small amounts.  That doesn't mean they will prevent an AI reaction though.  But maybe it wouldn't be as bad.  I don't eat out very often.

Edited January 23, 2020 by GFinDC

[Fenrir]

15 hours ago, Scott Adams said:

I eat out regularly because it's a part of life too important for me to give up. I also take precautions, but never fully trust what anyone tells me at restaurants. I just take enzymes before eating, and I've not had issues. I likely have gotten contamination, which is why I took the enzymes.

I eat out about twice a month and I typically only go to places I know are safe. I don't feel the need to take enzymes or use a Nima at these places as I've been there several times with no issues. I would probably take enzymes if I went to a new place though.

[Scott Adams]

@kareng sorry about directing that to you, I meant @cyclinglady, my bad...and why I shouldn’t post at midnight! Sorry about that!
 

Also, my response wasn’t intended to “attack” anyone, not even @cyclinglady, but I can see how you could view it that way give its misdirection...

if anything I was going after the CSA, who likely changed their name, in part due to their longstanding and questionable positions that were not supported by science.

[Scott Adams]

Not to rehash the quote too much here about GliadinX, but it being shown to “only” detox up to 1/8 of a slice of wheat bread means it should be ideal for its intended use...as a precaution against cross-contamination. It should never be used to knowingly eat gluten.

On a sidenote it did save my mom one Thanksgiving a couple of years ago when someone handed her a piece of regular gluten pumpkin pie and she ate it (instead of the gluten-free pumpkin pie). Normally she would’ve been more or less debilitated for the rest of the trip, but she took four or five capsules and ended up having zero side effects. This really happened, so I am a believer.

[Fenrir]

30 minutes ago, Scott Adams said:

Not to rehash the quote too much here about GliadinX, but it being shown to “only” detox up to 1/8 of a slice of wheat bread means it should be ideal for its intended use...as a precaution against cross-contamination. It should never be used to knowingly eat gluten.

On a sidenote it did save my mom one Thanksgiving a couple of years ago when someone handed her a piece of regular gluten pumpkin pie and she ate it (instead of the gluten-free pumpkin pie). Normally she would’ve been more or less debilitated for the rest of the trip, but she took four or five capsules and ended up having zero side effects. This really happened, so I am a believer.

Should be noted that 1/8th a slice of bread normally would result in a pretty bad reaction for many Celiacs. Last time I was exposed to that much gluten it made me puke and I was in pain for days and bad reflux for about a month. So, IMO, that's pretty a pretty significant exposure. So if it works on that it should be fairly effective for cross contamination.

[kareng]

this has gone so far off topic.  Why not start a new thread to debate these enzymes?  
 

let’s get back to the question of what we think of the Nima and if we have any other way to test food.  

[Fenrir]

I started this one:

It's more about the dosage but open for any discussion on enzymes.