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AristotlesCat

Gluten Free Coffee

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Hi Aristotlescat,

 Going off coffee is not a bad thing for an ill person.  Coffee puts a strain on our bodies as it creates an artificial boost and then a crash.  That isn't a good thing if your body is struggling to maintain itself IMHO.

Would you consider dropping the coffee for a month to see if it helps?  It may or may not, all depends on how your own unique body reacts to coffee.  Myself I don't do well with coffee except in minimal and infrequent amounts.

It may also help to simplify your diet down to meats, veggies, eggs and nuts.  Eliminate processed foods and dairy for a couple months.  If you don't get better on a simple, whole foods diet then there is something else going on.

Sometimes we have to be detectives to find food culprits.  An elimination diet should work though, if you have the patience for it.

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10 minutes ago, GFinDC said:

Hi Aristotlescat,

 Going off coffee is not a bad thing for an ill person.  Coffee puts a strain on our bodies as it creates an artificial boost and then a crash.  That isn't a good thing if your body is struggling to maintain itself IMHO.

Would you consider dropping the coffee for a month to see if it helps?  It may or may not, all depends on how your own unique body reacts to coffee.  Myself I don't do well with coffee except in minimal and infrequent amounts.

It may also help to simplify your diet down to meats, veggies, eggs and nuts.  Eliminate processed foods and dairy for a couple months.  If you don't get better on a simple, whole foods diet then there is something else going on.

Sometimes we have to be detectives to find food culprits.  An elimination diet should work though, if you have the patience for it.

No. I am not giving up coffee or caffein. Been drinking coffee since I was 13, so stopping now is a non-starter. We have narrowed it down to the coffee though it seems and switching to the certified brand will likely improve things. 

The issue here isn't stomach upset. It is peripheral neuropathy and other issues like vitamin deficiency due to a celiac reaction. All of my physicians agree I introduced something into the diet about two years ago and that was the problem. None of this should be controversial for anyone. My doctors are all well respected in the area I live and there is no reason for me to ignore their advice because of people on a forum. 

All I was hoping to get here is some recommendations for brands of coffee people have had success with and suffered no visible reactions too. If they can recommend gluten free labeled or certified gluten free coffee, even better. I don't know why over half the responses have been about other things or have even questioned my diagnosis. 

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10 hours ago, AristotlesCat said:

Also anyone else have positive or negative experiences with certain brands of coffee? 

I drink a fair amount of coffee, 90% of which is decaffeinated. I take it black and unsweetened. Occasionally I will get  a churning stomach from one brand, but I don't put that down to gluten but to coffee's natural effect on the gut.

I guess if I were looking to improve my diet I'd look at cutting down or cutting completely, but hell, I've not got many vices left and occasionally I really enjoy a caffeine buzz, so it's staying :D

 

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Just now, Jmg said:

I drink a fair amount of coffee, 90% of which is decaffeinated. I take it black and unsweetened. Occasionally I will get  a churning stomach from one brand, but I don't put that down to gluten but to coffee's natural effect on the gut.

I guess if I were looking to improve my diet I'd look at cutting down or cutting completely, but hell, I've not got many vices left and occasionally I really enjoy a caffeine buzz, so it's staying :D

 

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. 

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10 hours ago, AristotlesCat said:

I am a coffee drinker and have celiac, and my doctors are telling me my celiac isn't under control. I am getting really bad peripheral neuropathy as a result and my energy levels are insanely low. I've been fanatical about checking labels and in the past few months (just out of pure vigilance to get to the bottom of things) I've only eaten food that is certified gluten free. I am not even making stuff from the produce section out of an abundance of caution. But still my celiac symptoms remain and the doctor tells me it isn't under control. The only possible thing I think it can be is coffee. I do drink Kuerig K-Cups (the Green Mountain Breakfast Blend). When I've contacted them they say there is no gluten in the coffee itself, but I am guessing it is possible there is a cross contamination issue. Does anyone know of coffee brands that are certified gluten free (or at least labeled gluten free and have a good reputation)? I will even go with instant if I have to. 

Also anyone else have positive or negative experiences with certain brands of coffee? 

Consider joining The Gluten Free Watchdog.  It is like the Consumer Reports of Gluten Testing.  She tests all kinds of products for gluten contamination.  The very coffee you have been drinking, though not labeled gluten free, tested as gluten free.  So, this coffee is safe.  I would provide a link, but it requires a subscription.  You can see some text discussing this brand before actually going into the site in a google  search "coffee gluten free Watchdog".  

Google result:

"See if we found Green Mountain Coffee (Keurig) (NOT LABELED gluten-free) to be gluten free in our exclusive testing. Eat smart: Use our test results to decide if Green Mountain Coffee (Keurig) (NOT LABELED gluten-free) is ..." 

You might look to another source for gluten contamination.  

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1 minute ago, cyclinglady said:

Consider joining The Gluten Free Watchdog.  It is like the Consumer Reports of Gluten Testing.  She tests all kinds of products for gluten contamination.  The very coffee you have been drinking, though not labeled gluten free, tested as gluten free.  So, this coffee is safe.  I would provide a link, but it requires a subscription.  You can see some text discussing this brand before actually going into the site in a google  search "coffee gluten free Watchdog".  

Google result:

"See if we found Green Mountain Coffee (Keurig) (NOT LABELED gluten-free) to be gluten free in our exclusive testing. Eat smart: Use our test results to decide if Green Mountain Coffee (Keurig) (NOT LABELED gluten-free) is ..." 

You might look to another source for gluten contamination.  

I am a member of gluten free watch dog. They tested it for one report. That doesn't mean it is safe forever or that there are no cross contamination issues with the brand. You could have ten boxes that are fine and one box that isn't, and that one box is going to create issues in your body for weeks. I think Gluten Free Watch Dog is great, but you can't rely on one report from that site (especially if a particular product is giving you ongoing issues). 

What I have found by contacting Green Mountain myself is they don't do any kind of testing on site and their efforts to prevent cross contamination are minimal. They also share their lines with gluten free coffees and coffees that contain gluten. 

Bottom line for me is this: The preponderance of evidence suggests the K Cups are the issues. Probably not every single K Cup I consume, but cross contamination is enough of a problem that my symptoms have become quite bad over the course of about two years of drinking it. My plan is to shift to the certified brand and see if that improves things. 

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2 minutes ago, AristotlesCat said:

I am a member of gluten free watch dog. They tested it for one report. That doesn't mean it is safe forever or that there are no cross contamination issues with the brand. You could have ten boxes that are fine and one box that isn't, and that one box is going to create issues in your body for weeks. I think Gluten Free Watch Dog is great, but you can't rely on one report from that site (especially if a particular product is giving you ongoing issues). 

What I have found by contacting Green Mountain myself is they don't do any kind of testing on site and their efforts to prevent cross contamination are minimal. They also share their lines with gluten free coffees and coffees that contain gluten. 

Bottom line for me is this: The preponderance of evidence suggests the K Cups are the issues. Probably not every single K Cup I consume, but cross contamination is enough of a problem that my symptoms have become quite bad over the course of about two years of drinking it. My plan is to shift to the certified brand and see if that improves things. 

Point taken.  Anything that is processed is a risk.  Anything.  Switch brands to see if it helps.  I sincerely hope you find a solution.  

 

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Also I do want to point out, because I think it is important, that I started a thread asking a community called celiac.com what coffees they would recommend, if they knew of any certified gluten free coffees. I don't think anyone recommended a single brand except Ennis_TX. Most of the responses were either people telling me coffee should be fine, people suggesting my problem wasn't celiac related, etc. I don't need remote opinions about my medical condition from random posters on the internet. I just wanted coffee brand recommendations. 

This is not what I expected to get on a site devoted to celiac disease. I think there is a lot of outdated information being spread here. 

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I think we wanted you to know why you don't need a " certified gluten-free coffee".  Just to make life easier

Ok -brand's I have used & not been glutened. - k- cups - green mtn, Kirkland, donut shop , Roastarie

ground or bean- Starbucks, Caribou, kirkland (Costco) , roasterie, and several I don't remember the name of.  Never found an actual flavored one with gluten, either.

Edited by kareng

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I assumed from something you posted that you knew you were having Celiac issues  because your antibodies were still high?  Or you had a repeat endo and they found Celiac damage?       that was what made me think you were talking refractory .  

Edited by kareng
Stupid spell check

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21 minutes ago, kareng said:

I assumed from something you posted that you knew you were having Celiac issues  because your antibodies were still high?  Or you had a repeat endo and they found Celiac damage?       that wasn't what made me think you were talking refractory .  

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). 

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7 hours ago, AristotlesCat said:

Also I do want to point out, because I think it is important, that I started a thread asking a community called celiac.com what coffees they would recommend, if they knew of any certified gluten free coffees. I don't think anyone recommended a single brand except Ennis_TX. Most of the responses were either people telling me coffee should be fine, people suggesting my problem wasn't celiac related, etc. I don't need remote opinions about my medical condition from random posters on the internet. I just wanted coffee brand recommendations. 

This is not what I expected to get on a site devoted to celiac disease. I think there is a lot of outdated information being spread here. 

I go with Wegmans brand ground. You may want to get whole beans and grind them yourself. If you felt the need you could even rinse them off before grinding if it gives you peace of mind.  You are going to have a hard time finding very many coffees that are just coffee that are certified. If I am not mistaken the FDA doesn't want companies to label single ingredient items that are naturally gluten free as gluten free. I just took a look at the website of Terra Farms and it is their facilty that is certified if I read it correctly as they don't produce any gluten containing items. If going with a different coffee doesn't help do check the possibility that it may be non-food items that are getting you. Craft or building supplies or a significant others kisses for example.

In addition the folks on this board are trying to help you and you have been extremely rude. I understand you are not feeling well and are frustrated but some of your replies are over the top nasty.

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9 hours ago, AristotlesCat said:

I don't think anyone recommended a single brand except Ennis_TX.

I'm in the UK so I doubt many of the brands I would choose would be available to you. I have had the Kirkland (Costco) coffee without a problem and it's excellent value. :)

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14 hours ago, AristotlesCat said:

 

This is not what I expected to get on a site devoted to celiac disease. I think there is a lot of outdated information being spread here. 

I am going to have to say it and then I will say no more.  This website is literally filled with people who give the most current, up to date information on Celiac Disease.  We take it very seriously here.  It is also difficult to dispense information on the web when everyone has different health issues tied to Celiac BUT I know personally we have helped a lot of people over the years with problems and questions they have had.  The problem lies with people who don't like what they are being told but we have no control over that. But, this time, AristotlesCat, you are wrong. This is not a celebrity website on healthy, gluten free eating, it is run by people who know their stuff and dispense the most up to date information out there.

 

 

 

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21 hours ago, 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.

With all due respect, Gemini, AristotlesCat is not "the vast majority of celiacs", he is a specific person who has posted on the forum 

 

16 hours ago, AristotlesCat said:

They do not think I have refractory celiac disease. My celiac was completely under control for years, then I started showing symptoms and the GI doctor, as well as my neurologist and a celiac specialist agreed that the problem was something I introduced into my diet later was likely causing the problem. Doctor doesn't have an issue with me drinking coffee. Guys, I don't need your remote diagnosis. I just wanted to know if there was a certified gluten free brand of coffee. Apparently there is. 

Hi AristotlesCat,

I'm sorry about some of the responses you have had here. I felt pretty annoyed on your behalf that this is still happening on the forum. I also posted a while back about my symptoms that were not under control despite being a savvy, long-time strict adherer to the diet and I experienced a similar situation on here. I received an apology for it and an assurance that this does not reflect the what the forum is about. Please don't be discouraged or put off. I agree with what you say, things are different and each person's medical situation is different. You sound like you know what you are talking about and questions understandably come up too as our health and diet evolves. 

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He actually has a point on the coffee concern, with all the "Artisan" coffees and flavored blends out there now days, ESPECIALLY if you get preground where they use the same burr grinder. OR god forbid you use the bulk beans and grinder at a grocery store. You have a high chance for CC with gluten.

I have mentioned this over the years but I HAVE gotten gluten containing coffee before and GLUTEN CCed coffee. IT IS common for some companies to put roasted barely, Roasted oats, malt in artisan blends of coffee, at least down here. I have seen sugar cookie coffee, ginger bread coffee, coffee cake flavored coffee, oatmeal cookie coffee, flavors down here in Texas and they all contain gluten. I have seen them in bulk coffee bins at whole foods, central market, and in other forms. People buy them grind them using the provided grinder to everyone......you get CC.

NOW while this topic was covering K-cups originally with a much lower chance for contamination, consider K-cup manufactures do NOT JUST MAKE COFFEE. they now have k-cups for broths, teas, etc. And some do contain gluten. Lets go out on a limb here and say MAYBE one company that makes these did not clean the packing equipment, and some of the dust from a gluten containing dry concentrate wafers they load in these is on the packing equipment.....you see what can happen? 

Funny thing about industrial packing of commercial food products......it is common to use the same packing equipment for ALL lines in the company just cleaning it between runs. If a company makes a "Sauced" "Seasoned" etc. line of foods......well guess what a naturally gluten free canned or frozen food can be CCed. .....OH AND GUESS WHAT this has happened with birdseye and some people this year since they started the SAUCED lines and they admit they can not keep stuff 100%gluten-free now (there were post of this starting mid last year here on the forum of people getting sick)

YES I might be overly cautions, yes my OCD might be acting up, yes I might be bloody paranoid. But guess what.....I get neurological and gut effects from gluten and I will be honest, I care more about the brain ones......having your own mind turn on you.....it drives you nuts, it is the damned scariest thing on this earth and I have a damn good right to be overly paranoid about it.

Sorry for the rant.

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22 hours ago, 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.

With all due respect, Gemini, AristotlesCat is not "the vast majority of celiacs", he/she is a specific person who has posted on the forum because a doctor has advised that their celiac disease is not under control. Repeating the same old information again and again about the standard gluten free diet, being strict etc etc isn't going to help every single person you encounter on the forum. Everyone has a different level of experience with gluten, health and diagnositic status. 

Finally, the Fasano diet does not strip everything down to basic nutrition. I have been on it for six months and have had tests and detailed assessments of what I am eating that show an abundance of every known nutrient and micronutrient. Cutting out processed food (as per the Fasano diet) and doing strict food trials, AristotlesCat, can be a way to determine what might be causing the issue.

Good luck

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16 minutes ago, Ennis_TX said:

He actually has a point on the coffee concern, with all the "Artisan" coffees and flavored blends out there now days, ESPECIALLY if you get preground where they use the same burr grinder. OR god forbid you use the bulk beans and grinder at a grocery store. You have a high chance for CC with gluten.

I have mentioned this over the years but I HAVE gotten gluten containing coffee before and GLUTEN CCed coffee. IT IS common for some companies to put roasted barely, Roasted oats, malt in artisan blends of coffee, at least down here. I have seen sugar cookie coffee, ginger bread coffee, coffee cake flavored coffee, oatmeal cookie coffee, flavors down here in Texas and they all contain gluten. I have seen them in bulk coffee bins at whole foods, central market, and in other forms. People buy them grind them using the provided grinder to everyone......you get CC.

NOW while this topic was covering K-cups originally with a much lower chance for contamination, consider K-cup manufactures do NOT JUST MAKE COFFEE. they now have k-cups for broths, teas, etc. And some do contain gluten. Lets go out on a limb here and say MAYBE one company that makes these did not clean the packing equipment, and some of the dust from a gluten containing dry concentrate wafers they load in these is on the packing equipment.....you see what can happen? 

Funny thing about industrial packing of commercial food products......it is common to use the same packing equipment for ALL lines in the company just cleaning it between runs. If a company makes a "Sauced" "Seasoned" etc. line of foods......well guess what a naturally gluten free canned or frozen food can be CCed. .....OH AND GUESS WHAT this has happened with birdseye and some people this year since they started the SAUCED lines and they admit they can not keep stuff 100%gluten-free now (there were post of this starting mid last year here on the forum of people getting sick)

YES I might be overly cautions, yes my OCD might be acting up, yes I might be bloody paranoid. But guess what.....I get neurological and gut effects from gluten and I will be honest, I care more about the brain ones......having your own mind turn on you.....it drives you nuts, it is the damned scariest thing on this earth and I have a damn good right to be overly paranoid about it.

Sorry for the rant.

I have seen flavored teas with barley in them.  Anything that has added flavor is a possible problem IMHO, and needs to be checked.  Or avoided.  Avoidance is actually a pretty effective solution usually.

Aristotlescat seems to be saying that the forum members don't understand the cross-contamination issue.  But I don't see where anyone suggested cross-contamination is not a possible issue.  CC may not happen a lot with coffee, but it is possible.  CC issues are talked about fairly frequently on the forum.  It's a well known issue here.  When I was drinking coffee I had plain old Folgers coffee both regular and decaf and had no problems with it.

Ennis, I think you are right about nuerological effects being a big problem.  They are slow to resolve also.  No fun.

 

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4 minutes ago, GFinDC said:

I have seen flavored teas with barley in them.  Anything that has added flavor is a possible problem IMHO, and needs to be checked.  Or avoided.  Avoidance is actually a pretty effective solution usually.

Aristotlescat seems to be saying that the forum members don't understand the cross-contamination issue.  But I don't see where anyone suggested cross-contamination is not a possible issue.  CC may not happen a lot with coffee, but it is possible.  CC issues are talked about fairly frequently on the forum.  It's a well known issue here.  When I was drinking coffee I had plain old Folgers coffee both regular and decaf and had no problems with it.

Ennis, I think you are right about nuerological effects being a big problem.  They are slow to resolve also.  No fun.

 

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. 

 

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Well I am off to search for some more coffee, this has a interesting thing I would love to check. I am going to find flavored coffees in K-cups and ground. I am going to check with several companies and see if I track down some gluten free ones. Lets face it a chance at indulging in the forbidden flavors we can not have in a gluten free beverage form does sound a bit enticing.  I have already mailed off inquiries to over 7 different companies. I will then follow up, order some if they say it is safe....try it in a EZ-strip and a Nima test .....high tannin this could be a issue but anyway. THEN I will try them myself and post results.

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AristotlesCat,

You're not alone in this issue!  My celiac manifests it's symptoms with absence seizures, brain fog, fatigue, joint pain, and peripheral neuropathy.  I too have been "glutened" by coffee, from Folgers to K-cups.  I've contacted several coffee companies, both K-cup and standard coffee companies and have been told the same by all.  "Although coffee is a naturally gluten free product, we can not guarantee our product to be gluten free due to manufacturing processes."  I've also found myself to be sensitive to oats, so it sounds like we're in similar boats  :)

The best solution I've found has been a pre-packaged organic coffee at my local grocery store and I have purchased my own 4 cup coffee pot that I don't allow anyone else in my house to use.  Good luck!

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2 minutes ago, Sweischedel said:

AristotlesCat,

You're not alone in this issue!  My celiac manifests it's symptoms with absence seizures, brain fog, fatigue, joint pain, and peripheral neuropathy.  I too have been "glutened" by coffee, from Folgers to K-cups.  I've contacted several coffee companies, both K-cup and standard coffee companies and have been told the same by all.  "Although coffee is a naturally gluten free product, we can not guarantee our product to be gluten free due to manufacturing processes."  I've also found myself to be sensitive to oats, so it sounds like we're in similar boats  :)

The best solution I've found has been a pre-packaged organic coffee at my local grocery store and I have purchased my own 4 cup coffee pot that I don't allow anyone else in my house to use.  Good luck!

Thanks for the information. 

I just want to clarify something here as well, since it didn't occur to me this might be what people are zeroing in on: Peripheral Neuropathy is not an unusual celiac symptom. If some of the other posters were trying to suggest that my PN was caused by some other condition I have, let me assure them: my neurologist, my GI physician and a celiac specialist on my care team all concur (and in communication with each other) that the PN is linked to the celiac, not something else. And that it is being caused by mild exposure through something I have introduced into my diet in the past couple of years. 

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18 hours ago, badcasper said:

if you knock off coffee for a while and your energy level is low you will be a walking zombie.  i never trust flavored coffees i always grind my own in my own grinder. i drink kicking horse 454 its not acidic and so good i can drink it without creamer. i never use creamer. i recently switched iron pills from walmart brand to garden of life raw iron { my energy level is awesome} and they do not any negative effects

 

Thankfully creamer isn't an issue for me. I only use it occasionally and since I've been on the look out for the problem, I've only been taking the coffee black until I get to the bottom of things. 

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