Gluten Free Coffee

[Feeneyja]

I have posted this link elsewhere, but it's worth reading. The neurological affects of gluten are not the same process as involved in celiac disease. Cross reactivity of gliadin peptides with Purkinje epitopes in the cerebellum as well as cross reactivity of gliadin antibodies with sinapsin 1 are what is suspected. I have contacted Dr. Hadjivassilou personally on this. You do not have to have celiac disease to have gluten ataxia or neuropathy. Those with neurological symptoms appear to be more sensitive and it takes much longer to resolve.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

Those with neurological symptoms need to be more careful. It appears as if 20ppm guideline was determined for those with intestinal damage and does not apply to those with neurological symptoms. 

[AristotlesCat]

16 minutes ago, Feeneyja said:

I have posted this link elsewhere, but it's worth reading. The neurological affects of gluten are not the same process as involved in celiac disease. Cross reactivity of gliadin peptides with Purkinje epitopes in the cerebellum as well as cross reactivity of gliadin antibodies with sinapsin 1 are what is suspected. I have contacted Dr. Hadjivassilou personally on this. You do not have to have celiac disease to have gluten ataxia or neuropathy. Those with neurological symptoms appear to be more sensitive and it takes much longer to resolve.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

Those with neurological symptoms need to be more careful. It appears as if 20ppm guideline was determined for those with intestinal damage and does not apply to those with neurological symptoms. 

This isn't what is going on. I was fine on the previous brand of coffee. People here really should stop diagnosing people with things remotely. 

[GFinDC]

1 hour ago, AristotlesCat said:

The cross contamination issue came up in other threads with some of the same posters. My statement about that was taken those other threads into account. 

I am saying there are a few key posters downplaying the risks or possibility of cross contamination. I also think saying flat out it is virtually impossible that I had a reaction to the coffee is odd. Like I said, I've whittled down the possibilities with the help of my Doctor (and I dietician). The preponderance of evidence points to the coffee which is why I wanted recommendations for other brands I could try. Honestly this isn't an aspect of the post I expected to have to defend. I just wanted suggestions and found myself trying to justify my reasons to posters. And like I was saying, my argument wasn't that I am getting CC every time I have a K-Cup. It is that I was having some exposure from this brand and that was causing celiac symptoms. 

What really annoyed me though is even when people conceded my point it was with great reluctance and done in a way that made it sound like my case was atypical, caused by something other than celiac or I was crazy. My celiac is pretty typical. Most celiacs will react to CC. That isn't controversial. 

 

Right, cc is a known issue.  With coffee it is a somewhat unusual issue I think, but then I don't drink coffee anymore but rarely.  Maybe if you can ditch the Keurig machine you can try grinding your own beans and avoid the possibility of cc?

I want to mention B-12 and D vitamins, as celiacs are sometimes low on them.  But it sounds like your medical team is on the ball and would have checked that already.

Two years is a long time to not notice a celiac reaction.  Are you a silent celiac?  Meaning you don't have the usual GI system symptoms?  Having silent celiac can make things tough as you don't always know when you have been glutened.  So then you have to be extra careful of new foods.  And maybe get tested every 6 months for antibodies.

The internet is a great thing for communication, but also a lousy thing for communication.  It's easy to misunderstand someone's intention when you are a thousand miles away on a web browser.  Heck, it's hard enough to understand some people when they are standing right in front of you.  If we were all sitting around a table drinking gluten-free beers I imagine we'd get along great.   At least until the beer ran out...

 

 

 

[Feeneyja]

Geesh!  I am not trying to diagnos.  I was just adding to the information. I know that some of the folks here posting on this thread have neurological symptoms. My only point is that this CAN be an issue and that small amounts of cc are a problem particularly in those who have neurological symptoms.  

[ravenwoodglass]

40 minutes ago, AristotlesCat said:

This isn't what is going on. I was fine on the previous brand of coffee. People here really should stop diagnosing people with things remotely. 

Did you look at the atricle? If you have pn you have neuro impact. The article actually supports what you are saying about small amounts of CC in coffee causing your symptoms. Get one of the empty reuseable k-cup filters, run some vinegar through your machine and then a few cycles of clear water and use a whole bean you grind yourself or something from the place you found that certifes their coffee is gluten free.  Meanwhile make sure they have tested your B12 levels and compare with previous readings. If you are getting CC then you may not be utilizing B12 from your diet or regular supplements. PN is one of the things you would see if that was the case.  A sub-lingual B12 may be helpful in healing faster. Not trying to diagnose you but I had severe neuro impact and B12 helped my nerves heal a bit faster.

[kareng]

I just want to point out that when this thread started, it was not in The Super Sensitive Section.  I, and likely most other posters, were not  responding to a self-identified Super Sensitive.  Never did he identify as Super Sensitive. 

[knitty kitty]

On 5/10/2017 at 9:32 PM, AristotlesCat said:

I was diagnosed with celiac about seven years ago I think. At the time it showed up on an endo and I tested positive for antibodies. I was having tingling in my legs and feet and other symptoms. Went on the gluten free diet and my antibodies went down, my symptoms went away. No more tingling feet. This lasted for years. Then about two years ago symptoms returned. My legs not only began to tingle but the neurologist tested the nerves and found I had developed peripheral neuropathy. I can't feel my feet and my fingertips are almost completely numb.  I've started testing positive for antibodies and it shows up again on an endo. The doctor is nearly 100% convinced something with gluten has simply worked itself into my diet and if I can weed that out, I'll be fine. 

I trust my doctors. I don't trust random posters on a forum to diagnose my medical condition. Especially comments about my Crohns. My GI doctor is my crohns specialist and my crohns is stabilized. None of the Crohn's activity is responsible for the neuropathy or the vitamin issues (I have perianal crohn's so this is much lower down the digestive tract and quite under control). 

AristotlesCat, 

You said you tested positive for antibodies. Were the tests specific for gliadin antibodies? Or just antibodies of inflammation in general?

Coffee contains polyphenols.  The amount of polyphenols can vary with the roasting time of the coffee beans.  Perhaps the coffee you've switched to contains more polyphenols.  

Polyphenols destroy Thiamine (B1).  Thiamine deficiency symptoms include fatigue, peripheral neuropathy, and irritability.  

You said you had issues with vitamin deficiencies.  Are you taking vitamin supplements with your coffee?  If you take thiamine containing vitamins with coffee, the polyphenols in the coffee will bind with the thiamine in the vitamins and make it unusable to the body.  Same with the thiamine in foods taken at the same time as coffee.

Not trying to diagnose, just trying to offer alternative explanations for your conundrum since most of the forum members agree plain coffee is gluten free and not problematic.  

I had a horrible time with vitamin deficiencies which caused peripheral neuropathy before diagnosis.  All B vitamins work together, so if you're low on one, you'll recover faster if you take them all as in a Stress B Complex.

Oh, check your toothpaste.  Sulfites and sulfates will deactivate thiamine, too.

Hope this helps. Really hope you feel better soon.

 

 

 

[CoffeeLobby]

On 5/10/2017 at 5:54 PM, Gemini said:

One more thing that is not going to be popular......supermarkets are not required to prevent cc for the Celiac population. The world does not revolve around us. We are a minority and the rest of the population doesn't have to do this so this is why education is so important. "Naturally gluten free" is just that......it has no gluten in it's natural state but it is not up to the supermarket to provide it with a safe space for sale to Celiac's. You will have to use your own judgement on whether you want to purchase it.

You know.....neurological symptoms can takes years to improve or resolve and sometimes they never do.  Mine took 3 years to go away. It just may be that you have not healed yet.  Doctors are not always correct or helpful after diagnosis, either. Sometimes the road to recovery is long and painful, unfortunately.

I think this is a very important point that people need to understand before demanding things like accuracy in labeling laws: you are a minority of the population and minorities have fewer rights than the rest of us. This is just how society operates. Thankfully someone has said what I am sure we are all thinking. It is about time we stopped blaming food manufactures, who bring you things like delicious mountain roasted coffee, and start blaming the consumer when they refuse to take the steps necessary to contact us and get to the bottom of things. 

[CoffeeLobby]

On 5/10/2017 at 0:34 PM, Gemini said:

You will never find certified gluten-free coffee because coffee is naturally gluten free.  In 12 years of being gluten-free and many, many cups of coffee later, I have never been cc'd by coffee either.  It is highly doubtful that coffee would be cc'd

No one has ever had a reaction to coffee, and no one ever will. It is naturally gluten free. What more is there to know? 

Astounded how complicated people make things sometimes. Sad. Very sad. 

[CoffeeLobby]

On 5/10/2017 at 9:02 PM, AristotlesCat said:

Again, I should specify, this isn't about the coffee creating any stomach symptoms. I have both celiac and crohns and generally find I handle coffee just fine. The problem is something in my diet within the last couple of years has triggered other celiac symptoms and so I am attempting to find a brand I can be more certain is gluten free. One of the changes I made to my diet was switching to the K Cups about two years ago (which is around the time my symptoms returned). 

Either way, I do not know why the idea that some coffee brands may have trace amounts of gluten and this could be an issue is at all controversial on a celiac site. 

Obviously this is a strange reaction. People have already explained coffee is naturally gluten free. Suggesting that it has gluten it, when the we all know coffee has no gluten, is just non-scientific. I agree with the other posters who say this is probably a result of the coffee irritating your digestive system. This can happen when you consume inferior blends. Be sure to buy premium coffee and see if that helps. 

[Ennis-TX]

1 hour ago, CoffeeLobby said:

Obviously this is a strange reaction. People have already explained coffee is naturally gluten free. Suggesting that it has gluten it, when the we all know coffee has no gluten, is just non-scientific. I agree with the other posters who say this is probably a result of the coffee irritating your digestive system. This can happen when you consume inferior blends. Be sure to buy premium coffee and see if that helps. 

Out of the 7 companies I contacted about gluten in the flavored coffees, 3 got back to me saying not to use their products. As mentioned across line contamination with packing when a company does flavored blends is a huge cause for concern with these especially the K-cups.  

ON a side note ChristopherBeanCoffee just assured me their coffee is safe and say the flavoring is done with a gluten free liquid that is added to the beans after roasting. The person talking to me about it says they have crohns and their mother is a celiac. Seems quite promising and they have a HUGE desert coffee line up.   I have asked for detailed information on their flavoring and will post a update when this is acquired,

[Feeneyja]

"Out of the 7 companies I contacted about gluten in the flavored coffees, 3 got back to me saying not to use their products."

I want to thank you Ennis for checking this out.  It demonstrates a few very important points:

- Check it out if you are wondering (I know, who has time???  You just want a recommendation so you can move on).

- any time there is flavor added, be cautious until you can confirm or make sure it is labeled gluten free. (I know, good luck finding a coffee labeled gluten free because, as already stated, it is naturally gluten free).

- charitable responses are possible

[CoffeeLobby]

25 minutes ago, Ennis_TX said:

Out of the 7 companies I contacted about gluten in the flavored coffees, 3 got back to me saying not to use their products. As mentioned across line contamination with packing when a company does flavored blends is a huge cause for concern with these especially the K-cups.  

ON a side note ChristopherBeanCoffee just assured me their coffee is safe and say the flavoring is done with a gluten free liquid that is added to the beans after roasting. The person talking to me about it says they have crohns and their mother is a celiac. Seems quite promising and they have a HUGE desert coffee line up.   I have asked for detailed information on their flavoring and will post a update when this is acquired,

Except the OP wasn't talking about flavored coffees. I suppose we could massively retool the entire system and all of society for 1% of the population and the fraction of a percent of that population who might get exposed to the incredibly unlikely, and nearly impossible, cross contamination concern. But lets be honest, these companies are in the business of making money. If they glutened you all the time, they wouldn't make any money. Your fellow celiacs have pointed out, even celiac organizations say coffee is fine. It is naturally gluten free. So many impossible things would need to occur for gluten to get into your coffee, and the most likely situation here is someone had a digestive reaction to an inferior blend. If they only purchased something like Peet's Uzuri African Blend, this whole problem could be avoided. 

[Feeneyja]

And I believe the OP was just looking for confirmed gluten-free coffee from someone who might have experience.  Judgement on the necessity of said request is really not necessary. 

[CoffeeLobby]

7 minutes ago, Feeneyja said:

And I believe the OP was just looking for confirmed gluten-free coffee from someone who might have experience.  Judgement on the necessity of said request is really not necessary. 

But coffee is naturally gluten free. It is nearly impossible that this person's coffee was causing them any celiac problems at all. This is a myth that needs to be dispelled because it will lead to increased prices and loss of jobs if we go down that road of demanding companies test for gluten for naturally gluten free foods. As I said, this is a business, making money is the goal. Coffee makers can't make money if they lose your trust. So it just isn't in their interest to allow cross contamination to occur. It is such a non-issue. 

But since we are recommending brands here I highly suggest trying Stumptown Coffee Roasters Colombia El Admirador whole bean coffee. Very rich and creamy flavor. 

[Feeneyja]

As Ennis post confirmed, flavored coffees can contain gluten and many companies share the same line. The statements about shared lines are comepletely voluntary. It is entirely possible that there is cross contamination.  Even gluten free foods get recalled periodically.  

The fact remains that, while many do not react to under 20ppm, there are some that do.  Maybe it is the minority, but for that minority it is 100% their reality.  

Again, OP is just looking for some options. Not a retooling of the system.  Ennis was kind enough to pursue it. 

[Sweischedel]

See below, as I've copied and pasted from the Folger's website.  Even though coffee is naturally gluten free, cross contamination is an issue for those with neurological symptoms related to Celiac.  Our orignal poster just wanted a recommendation of some brands that were certified gluten free. 

 

Coffee is not a source of gluten, and our Folgers roast and ground coffee items are produced in a dedicated facility where no other types of agricultural crops are handled or processed; however, due to the use of common equipment within the agricultural community to harvest, store, and transport crops, our roast and ground products may contain trace amounts of grain-based ingredients. Additionally, our flavored coffee products may contain added ingredients that are not gluten free.

[CoffeeLobby]

6 minutes ago, Sweischedel said:

See below, as I've copied and pasted from the Folger's website.  Even though coffee is naturally gluten free, cross contamination is an issue for those with neurological symptoms related to Celiac.  Our orignal poster just wanted a recommendation of some brands that were certified gluten free. 

 

Coffee is not a source of gluten, and our Folgers roast and ground coffee items are produced in a dedicated facility where no other types of agricultural crops are handled or processed; however, due to the use of common equipment within the agricultural community to harvest, store, and transport crops, our roast and ground products may contain trace amounts of grain-based ingredients. Additionally, our flavored coffee products may contain added ingredients that are not gluten free.

As another poster pointed out, these are just legal mumbo jumbo to protect the companies from lawsuits. Unfortunately until we get serious tort reform, it will be difficult for companies to communicate in plain and straightforward English to their customers. Coffee is naturally gluten free and cross contamination pretty much never happens with these kinds of foods. This kind of fear is not helpful because it causes unnecessary concern and food avoidance. The last thing we want is to inadvertently promote Avoidant Restrictive Food Intake Disorder (a very serious eating disorder that can be brought on by overthinking food safety issues).  

[CoffeeLobby]

11 minutes ago, Feeneyja said:

As Ennis post confirmed, flavored coffees can contain gluten and many companies share the same line. The statements about shared lines are comepletely voluntary. It is entirely possible that there is cross contamination.  Even gluten free foods get recalled periodically.  

The fact remains that, while many do not react to under 20ppm, there are some that do.  Maybe it is the minority, but for that minority it is 100% their reality.  

Again, OP is just looking for some options. Not a retooling of the system.  Ennis was kind enough to pursue it. 

Almost no celiac reacts to 20 PPM. Those who do usually have much more serious conditions. And we must care for and treat these people. But we shouldn't radically alter how we run things or force testing that can only increase prices. And the FDA has clearly stated that any food identified as gluten free or naturally gluten free must have under 20 ppm. So there is no problem here. If the food is naturally gluten free, then it is by definition under 20 ppm. 

[CoffeeLobby]

On 5/10/2017 at 2:37 PM, Gemini said:

....and if this were actually a real problem in life, Celiac organizations would be warning us to find gluten free, certified coffee.  This is overkill and it really misinforms and scares people.  The vast majority of Celiac's do not have to follow the Fasano diet. We heal well on the standard, strict gluten-free diet. Key word....strict, with no cheating or risk taking. I would be willing to bet that those who do follow it have other issues going on that impedes their recovery in the beginning. The Fasano diet strips everything down to basic nutrition and that type of diet works well for a lot of other problems that Celiac's can suffer from.

This is exactly the problem. It is absolutely overkill and can only lead to reduced quality of life. Who wants to go through their daily routine denying themselves perfectly safe cups of coffee because they are worried about an issue not even the most ardent advocates of celiac disease speak on. Simply put there isn't a problem with gluten and coffee. Celiacs can enjoy coffee just like anyone else and the suggestion that they can't is almost offensive to me. 

[CoffeeLobby]

On 5/10/2017 at 3:26 PM, AristotlesCat said:

I have to push back on this. I am not saying everyone should drink certified gluten free coffee. I am saying I was looking for certified gluten free because MY DOCTOR SAID my celiac is still not under control and coffee is the only thing I am currently eating that it could be coming from. So I am hoping to find a better brand than the one I am currently using. And your reaction is to basically dismiss me. 

This in fact may be the problem. I know there is a small trend toward eating coffee beans whole, even using ground coffee to flavor meat and other food items. For most people this practice is fine but if you have a sensitive digestive system, eating coffee whole could produce irritation. Try drinking coffee instead and see if that helps. 

[Cathy D]

"Pure" coffee is gluten free. When a manufacturer uses the same machine to make both "pure" coffee and also flavored coffees, cross contamination can occur.

After calling or emailing several companies that make coffee, I decided to go with Peets coffee. I have only tried  their Sumatra, which I make daily at home.  I only drink coffee that I have prepared in my coffee machine,  and  I have only used Peets Sumatra  in this coffee machine.

Here is their email:

Kathy (Peet's Coffee and Tea)

Jul 3, 2016 6:06 PM PDT

Hi Cathy,

Thank you for your email.

Coffee does not contain gluten. We do not purchase coffee where cross-contamination with gluten is known, and we do not add any gluten before, during, or after roasting.

In regards to our retail store beverage ingredients they are gluten free, however our drinks are crafted in an environment where gluten is present.

Thank you for contacting us. Please call us on Tuesday when we are back in the office if you have any further questions or concerns.

Kathy | Customer Service Specialist | Peet's Coffee & Tea | Mon-Fri 6am-6pm PST | 800.999.2132

I hope this information is helpful.

Cathy

 

 

[Ennis-TX]

I just ordered several of the most questionable flavored coffees from christophebean, and will be testing them when they come in, my results are not lab level and it is a high tannin based product which could throw off the results but I will try testing the grounds regardless for the, french toast, chocolate doughnut, and a few others using both a EZ-Strip kit and a nima. Again will not be lab accurate but should give a idea and if they show up negative I just found a nice flavored coffee that is safe.

I know the flavored coffee is not what the original post was about, it was about finding recommendations on coffee that was 100% safe and he would not have to worry about and feed back on issues others have had with certain brands of coffee. I am approaching this at the angle if you can find a company that claims no gluten and the items most likely to be contaminated (flavored coffees with dough etc. flavoring) is gluten free then the plain coffee from said company has a much higher chance of being truly safe.

And to address the most recent ranting troll to our board who seems to have just made an account to toy with and mess with people. CoffeeLobby, some of us do react to below 20ppm, some of us have near life threatening reactions to this. Full motor loss, brain damage, vomiting on the floor for hours followed by spending the next day between the toilet and the bed......yeah gluten is not a joke if you find it funny you should just leave. Given we all have different reactions assume someone is always a highly sensitive individual and that these issues are life threatening. This is a autoimmune disease that can dramatically effect ones life and well being.

Yes we can be a bit paranoid and YES the majority of PURE coffee is gluten free, HELL if we stuck to whole beans ground our own and only used main name brands I am sure we would all be fine. But in cases of K-cups, off brands, preground, etc. we will run into CC issues and gluten in coffee. 

 

 

[Gemini]

2 hours ago, CoffeeLobby said:

As another poster pointed out, these are just legal mumbo jumbo to protect the companies from lawsuits. Unfortunately until we get serious tort reform, it will be difficult for companies to communicate in plain and straightforward English to their customers. Coffee is naturally gluten free and cross contamination pretty much never happens with these kinds of foods. This kind of fear is not helpful because it causes unnecessary concern and food avoidance. The last thing we want is to inadvertently promote Avoidant Restrictive Food Intake Disorder (a very serious eating disorder that can be brought on by overthinking food safety issues).  

Nice to see another poster who doesn't live with extreme food fear.  If people want to believe that everything is contaminated, I have no problem with that. To each his own. I am a sensitive Celiac who has to be very careful but also learned what reality is with the food I eat. With certain foods and drink, cc is so unlikely its not worth getting your knickers in a twirl over it. I am done trying to help people who are worried over things they should not be worried about.  There is just too much fear in Celiac-land and that's a shame.  However, I still like helping people on here navigate the newness of the gluten-free diet and hopefully, teach them their life does not end because they can't eat gluten. There is so much great food out there we can safely eat and travel is getting easier so it's all good!

[kareng]

3 hours ago, CoffeeLobby said:

Except the OP wasn't talking about flavored coffees. I suppose we could massively retool the entire system and all of society for 1% of the population and the fraction of a percent of that population who might get exposed to the incredibly unlikely, and nearly impossible, cross contamination concern. But lets be honest, these companies are in the business of making money. If they glutened you all the time, they wouldn't make any money. Your fellow celiacs have pointed out, even celiac organizations say coffee is fine. It is naturally gluten free. So many impossible things would need to occur for gluten to get into your coffee, and the most likely situation here is someone had a digestive reaction to an inferior blend. If they only purchased something like Peet's Uzuri African Blend, this whole problem could be avoided. 

Thats a big turn around for you, AC