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AristotlesCat

Gluten Free Coffee

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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? 

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1 hour 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? 

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.

However, coffee is an irritant to the gut so maybe you should just stop drinking if for awhile to see if things improve?  Have you had your antibodies checked to see if it is actually a gluten related problem?  Your symptoms can be caused by so many other things.

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I have been CCed by coffee from a local blend where they used toasted barely ground in with the grounds to give it a desert flavor. I use FreshRoastedCoffee now days just fine with now issues and get a low acid one like sumatra.   Your issue might stem from a contaminated machine or coffee mug more then the coffee being contaminated. Or you might be reacting bad to the coffee itself. Try dropping coffee for a bit and seeing if that is it....might sound insane but I sometimes rotate off of coffee and to  a strong tea from republic of tea (They make a high Caffeine version also) a for a week.  I can suggest some things to help with the nurothapy a bit like certain supplements I take daily.

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The FDA has found trace gluten in coffee. Please look into the Fasano Gluten Cross Contamination Elimination Diet. It was designed for a clinical trial for celiacs who were not responding to a standard gluten free diet. It is based around avoiding processed foods and those such as grains which show up as containing gluten even if 'naturally gluten free'.

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56 minutes ago, NightSky said:

The FDA has found trace gluten in coffee. Please look into the Fasano Gluten Cross Contamination Elimination Diet. It was designed for a clinical trial for celiacs who were not responding to a standard gluten free diet. It is based around avoiding processed foods and those such as grains which show up as containing gluten even if 'naturally gluten free'.

....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.

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2 hours ago, 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.

However, coffee is an irritant to the gut so maybe you should just stop drinking if for awhile to see if things improve?  Have you had your antibodies checked to see if it is actually a gluten related problem?  Your symptoms can be caused by so many other things.

Gemini. Just because something is naturally gluten free, doesn't mean cross contamination can't happen. Many things are naturally gluten free in their original state but can easily stop being gluten free if they come into contact with something like flour.  I am frankly astounded that you haven't been cc'd if you've been freely drinking just any brand of coffee (because some manufacturers I've contacted have told me their coffees probably are not safe for celiacs). My understanding is it can occur at many different points of production (from being harvested and processed on shared equipment that also is used for wheat, to coming into contact with other products at the manufacturer's. 

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2 hours ago, 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.

However, coffee is an irritant to the gut so maybe you should just stop drinking if for awhile to see if things improve?  Have you had your antibodies checked to see if it is actually a gluten related problem?  Your symptoms can be caused by so many other things.

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. 

That said, I think there is a strong argument to be made that celiac organizations should be pushing harder on companies that sell 'naturally gluten free' products. The amount of gluten it takes to trigger a reaction in a celiac is incredibly small and just a little bit of contact with something else being processed in their facility is enough. So it isn't like this is some crazy thing I am proposing. I am not saying all coffee is bad for celiacs or that everyone needs to go 100% gluten free. But it is pretty obvious there isn't enough being done to prevent cross contamination in some areas of the super market. And too many companies rely on 'naturally gluten free' to shield them from having to take steps to prevent cross contamination in their facility. And just an FYI, most coffee manufacturers I have contacted, do not takes such steps even if the coffees share the line with things like flavored coffees that have gluten. 

Edited by AristotlesCat
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1 hour ago, Ennis_TX said:

I have been CCed by coffee from a local blend where they used toasted barely ground in with the grounds to give it a desert flavor. I use FreshRoastedCoffee now days just fine with now issues and get a low acid one like sumatra.   Your issue might stem from a contaminated machine or coffee mug more then the coffee being contaminated. Or you might be reacting bad to the coffee itself. Try dropping coffee for a bit and seeing if that is it....might sound insane but I sometimes rotate off of coffee and to  a strong tea from republic of tea (They make a high Caffeine version also) a for a week.  I can suggest some things to help with the nurothapy a bit like certain supplements I take daily.

Thanks. I have considered switching to Republic of Tea (since i noticed they do have a certified gluten free label). I've been a coffee drinker my whole life so that is more of a last resort thing. 

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2 hours ago, Gemini said:

You will never find certified gluten-free coffee because coffee is naturally gluten free. 

Also, I just found a certified brand. Terra Farm apparently makes certified gluten free coffee. 

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Not sure about how the K cups really work, but is anyone else using the machine?  Those with flavors or from other manufacturers could have gluten.  

I drink coffee without any issues, but just the plain stuff.  I think coffee is not on the Fasano diet because it can be harsh on a damaged GI system.  

Are you consuming oats?  About 10% of celiacs can not consume oats even if they are certified gluten free.  Do you eat out?  How many processed foods do you eat, including certified gluten free?   Have you been checked for vitamin or mineral deficiencies by your GI?  How many times has your antibodies been tested since your diagnosis.  It can a year or longer for antibodies to come down.  Years to heal from nerve damage...and some never heal.  Have you been tested for Hashimoto's Thyroiditis?  

Just throwing out suggestions.  I hope you figure it out.  ?

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1 hour ago, AristotlesCat said:

Also, I just found a certified brand. Terra Farm apparently makes certified gluten free coffee. 

That is great!  It should give you piece of mind.   

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1 hour ago, AristotlesCat said:

Thanks. I have considered switching to Republic of Tea (since i noticed they do have a certified gluten free label). I've been a coffee drinker my whole life so that is more of a last resort thing. 

We use Republic of Tea.  It is certified gluten free, but mostly we love all the Downton Abbey flavors!   Makes us feel as if we were in England!  

We also drink a lot of plain old Lipton too!  

 

Edited by cyclinglady

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5 minutes ago, cyclinglady said:

Not sure about how the K cups really work, but is anyone else using the machine?  Those with flavors or from other manufacturers could have gluten.  

I drink coffee without any issues, but just the plain stuff.  I think coffee is not on the Fasano diet because it can be harsh on a damaged GI system.  

Are you consuming oats?  About 10% of celiacs can not consume oats even if they are certified gluten free.  Do you eat out?  How many processed foods do you eat, including certified gluten free?   Have you been checked for vitamin or mineral deficiencies by your GI?  How many times has your antibodies been tested since your diagnosis.  It can a year or longer for antibodies to come down.  Years to heal from nerve damage...and some never heal.  Have you been tested for Hashimoto's Thyroiditis?  

Just throwing out suggestions.  I hope you figure it out.  ?

I am the only one who uses the machine. 

I don't consume oats. My GI physician hasn't tested me for any reaction to oats themselves, but because things are not under control and I also have crohn's disease, he has advised that I not consume any oats at all just in case I am in that camp of people who also can't digest them. 

I have have been diagnosed for many years and the problems started again about two years ago (around the time I switched to the K Cup in fact). He is basing the conclusion on my antibody levels but also vitamin levels, ongoing damage to the nerves (which they tested for), and other symptoms. He basically said he is 98% sure my worsening peripheral neuropathy is due to the celiac not being under control. 

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1 hour ago, AristotlesCat said:

Gemini. Just because something is naturally gluten free, doesn't mean cross contamination can't happen. Many things are naturally gluten free in their original state but can easily stop being gluten free if they come into contact with something like flour.  I am frankly astounded that you haven't been cc'd if you've been freely drinking just any brand of coffee (because some manufacturers I've contacted have told me their coffees probably are not safe for celiacs). My understanding is it can occur at many different points of production (from being harvested and processed on shared equipment that also is used for wheat, to coming into contact with other products at the manufacturer's. 

Most companies, even drug companies (unfortunately), will not recommend their products for celiacs if they do not test their final product.  Ah, those corporate attorneys are always on the watch for product liability.  They love issuing a blanket statement like, "Although our products are naturally gluten free or we use no ingredients that contain gluten, we can not guarantee them to be gluten free.

what is a celiac to do?  Common sense, experience and the advice of our celiac friends help reduce the risk.  

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2 minutes ago, cyclinglady said:

Most companies, even drug companies (unfortunately), will not recommend their products for celiacs if they do not test their final product.  Ah, those corporate attorneys are always on the watch for product liability.  They love issuing a blanket statement like, "Although our products are naturally gluten free or we use no ingredients that contain gluten, we can not guarantee them to be gluten free.

what is a celiac to do?  Common sense, experience and the advice of our celiac friends help reduce the risk.  

With medications I think they should be forced to test for them and they should make all medications that can be gluten free. If you have to take a pill every day and you have no choice, you shouldn't have a question mark on it. It should be gluten free. 

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41 minutes ago, AristotlesCat said:

I am the only one who uses the machine. 

I don't consume oats. My GI physician hasn't tested me for any reaction to oats themselves, but because things are not under control and I also have crohn's disease, he has advised that I not consume any oats at all just in case I am in that camp of people who also can't digest them. 

I have have been diagnosed for many years and the problems started again about two years ago (around the time I switched to the K Cup in fact). He is basing the conclusion on my antibody levels but also vitamin levels, ongoing damage to the nerves (which they tested for), and other symptoms. He basically said he is 98% sure my worsening peripheral neuropathy is due to the celiac not being under control. 

Ah, like me and so many others, you are managing two or more autoimmune  disorders.  It is pretty difficult outside of pharmaceuticals to manage Crohn's.  I suspect you have carefully confirmed that drugs you are taking are gluten free.  

I have recently been dealing with hives.  My GI and allergist are not sure of the source, but we are thinking a Mast Cell Activation issue or plain old autoimmune urticaria (hives).  Despite my thyroid shrinking and nodules resolved, my thyroid antibodies are high.  Not as high as in the past, but still very active.  I am wondering if my immune system is provoking my both my thyroid and celiac antibodies to remain elevated.  My IgA level is high indicating constant inflammation.  The problem is that I will never know.  No one has studied this, and believe me I have been researching.  

Perhaps, you are developing refractory celiac disease and that is something to consider.  Perhaps, another lovely AI is developing (let's hope not).  

The best we can do is to move forward.  I am sure you are doing your best to remain gluten free.  I completely understand your frustration.    I hope your doctors are supportive and not critical.  

Consider the Fasano or some modification of it.  It just might help.  It can not cause harm to focus on Whole Foods.  

I wish you well.  

 

 

Edited by cyclinglady
Typos....ugh!

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9 minutes ago, AristotlesCat said:

With medications I think they should be forced to test for them and they should make all medications that can be gluten free. If you have to take a pill every day and you have no choice, you shouldn't have a question mark on it. It should be gluten free. 

I agree!!!  Unfortunately, this bill keeps getting lost in the shuffle in Congress.  I am self-employed, am involved with Band boosters, Girl Scouts, have a kid in high school,  and am in an Orchestra.  I have not time to champion this worthy cause.  If you or others have time, please consider helping this bill get passed.  We should work towards a solution for gluten free medication!  

 

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1 hour ago, AristotlesCat said:

Gemini. Just because something is naturally gluten free, doesn't mean cross contamination can't happen. Many things are naturally gluten free in their original state but can easily stop being gluten free if they come into contact with something like flour.  I am frankly astounded that you haven't been cc'd if you've been freely drinking just any brand of coffee (because some manufacturers I've contacted have told me their coffees probably are not safe for celiacs). My understanding is it can occur at many different points of production (from being harvested and processed on shared equipment that also is used for wheat, to coming into contact with other products at the manufacturer's. 

AristotlesCat.  I have not been freely drinking just any coffee and stick to a couple of brands, for taste preference.  But when I travel and they ask me if I want a cup of coffee after the meal, I do not grill them on where they get the beans from.  In 12 years, I have never been glutened or cc'd by coffee and that is not a really astounding fact. 

Most good coffee is done by companies that just do coffee so there is no need to find out where the coffee comes from. I am talking of unflavored coffee only. I tend to like coffee flavored coffee.  ;)  The odds of coffee being processed on the same lines as a gluten containing product is probably slim to none.

Manufacturers tend to respond to questions in the manner you were answered in because they are wary of people and lawsuits and don't want to go there or they are truly ignorant of the facts on Celiac and say that because it's a safe answer.........for them.  You are overthinking this and again, if it were a concern AT ALL, I am pretty sure Celiac organizations would be warning us to screen coffee well.  They don't.  Honestly, after 12 years, if I were being glutened by some of the issues I have seen on here, I never would have healed. But I have healed really well and I love my coffee.

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4 minutes ago, Gemini said:

AristotlesCat.  I have not been freely drinking just any coffee and stick to a couple of brands, for taste preference.  But when I travel and they ask me if I want a cup of coffee after the meal, I do not grill them on where they get the beans from.  In 12 years, I have never been glutened or cc'd by coffee and that is not a really astounding fact. 

Most good coffee is done by companies that just do coffee so there is no need to find out where the coffee comes from. I am talking of unflavored coffee only. I tend to like coffee flavored coffee.  ;)  The odds of coffee being processed on the same lines as a gluten containing product is probably slim to none.

Manufacturers tend to respond to questions in the manner you were answered in because they are wary of people and lawsuits and don't want to go there or they are truly ignorant of the facts on Celiac and say that because it's a safe answer.........for them.  You are overthinking this and again, if it were a concern AT ALL, I am pretty sure Celiac organizations would be warning us to screen coffee well.  They don't.  Honestly, after 12 years, if I were being glutened by some of the issues I have seen on here, I never would have healed. But I have healed really well and I love my coffee.

maybe you are not the sole source of experience on all things gluten gemini. It is pretty obvious to me, having narrowed down the suspects, this K Cup is likely the source of the problem. And I've even found a certified brand. You can poo-poo peoples' concerns and just dismiss them. But it only takes about a minute of thought to see how cross contamination could occur with may coffees. Frankly looking at your posts, you are one of the most careless celiacs I've heard from. And I think your attitude is part of why celiacs have such a hard time. I am by no means a person who buys into gluten myths. but you have such a false sense of confidence on these points. 

Bottom line, you were the one who said no such thing as certified gluten free coffee exists. I found it. What do you know. You were wrong and I was right. 

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2 hours ago, 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. 

No, I am not dismissing you at all, just trying to educate you on the reality on living with Celiac, without becoming overly worried and overthinking everything. Your statement about your condition not being well controlled so it must be the coffee is very general and leaves so many questions unanswered that no one is under any obligation to answer. There could be many reasons for this or the docs could have it wrong and you have something else going on....which is very normal for a Celiac to encounter.

That said, I think there is a strong argument to be made that celiac organizations should be pushing harder on companies that sell 'naturally gluten free' products. The amount of gluten it takes to trigger a reaction in a celiac is incredibly small and just a little bit of contact with something else being processed in their facility is enough. So it isn't like this is some crazy thing I am proposing. I am not saying all coffee is bad for celiacs or that everyone needs to go 100% gluten free. But it is pretty obvious there isn't enough being done to prevent cross contamination in some areas of the super market. And too many companies rely on 'naturally gluten free' to shield them from having to take steps to prevent cross contamination in their facility. And just an FYI, most coffee manufacturers I have contacted, do not takes such steps even if the coffees share the line with things like flavored coffees that have gluten. 

The one thing anyone who is diagnosed with Celiac MUST DO is read truthful literature from reliable Celiac organizations or medical literature to learn the disease well and how to read labels and figure out what is safe. I spent upwards of a year doing this and the information I learned has served me well. Many people, and I am not saying YOU, do not do this so this is why there is so much misinformation out there.  I am astounded myself that I am seeing the same inaccurate information 12 years after my diagnosis.

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.

 

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1 minute ago, Gemini said:

 

Gemini I already explained to you, MY DOCTOR has concluded this is celiac not being well controlled and believes gluten is getting into my diet somehow. The coffee is the most likely source I was able to narrow down. Not 100% for sure, but the most likely. So I was looking for recommendations on reliable coffee brands. You replied by saying you have never been glutened by coffee ever, and I shouldn't worry so much. Then you suggested I was uninformed. I have done the research. I only rely on medical literature, my doctor and ignore stuff from health magazines and websites. So please stop acting like you are the prophet of celiac. 

And yes I think your attitude is harmful. We are a minority but we get very sick when gluten works its way into our food. Supermarkets are not legally obligated to ensure naturally gluten free products remain so, but I believe they ought to be. We might be 1% of the population but we shouldn't have to play these stupid games with manufacturers and supermarkets every time we want a food item. 

And I also have been diagnosed for many years. Frankly I think part of the problem is you are an old celiac. Someone who was diagnosed back in the day and operating on outdated information. But whatever. 

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15 minutes ago, AristotlesCat said:

maybe you are not the sole source of experience on all things gluten gemini. It is pretty obvious to me, having narrowed down the suspects, this K Cup is likely the source of the problem. And I've even found a certified brand. You can poo-poo peoples' concerns and just dismiss them. But it only takes about a minute of thought to see how cross contamination could occur with may coffees. Frankly looking at your posts, you are one of the most careless celiacs I've heard from. And I think your attitude is part of why celiacs have such a hard time. I am by no means a person who buys into gluten myths. but you have such a false sense of confidence on these points. 

Bottom line, you were the one who said no such thing as certified gluten free coffee exists. I found it. What do you know. You were wrong and I was right. 

I never said I was the sole source of experience with gluten and I will forgive your snarkiness because I understand you are not well. I will also forgive your comment about being a careless Celiac because you do not know me, you do not know that I almost died from this disease and I can pretty much guarantee you that I am as careful as a Celiac can be with regards to education and following this diet. After reading your other posts and learning you have Crohn's, that explains a lot but I will not say anything on that subject because you seem to resent advice unless it agrees with your thought process. I hope you find the source of your troubles and this improves your mindset.

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I am not even sure why you are asking about coffee.  if the docs think you may have Refractory Celiac - I don't think coffee is allowed on the Gluten Elimination Diet (Fasano Diet).  Most doctors want you to try that for 6 -8 weeks (if I remember the time frame correctly) before going to steroids or whatever the next step is.  It usually "cures" the supposedly refractory Celiac, which is fabulous!  No one really wants to go to treatments for that.

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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

 

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1 hour ago, kareng said:

I am not even sure why you are asking about coffee.  if the docs think you may have Refractory Celiac - I don't think coffee is allowed on the Gluten Elimination Diet (Fasano Diet).  Most doctors want you to try that for 6 -8 weeks (if I remember the time frame correctly) before going to steroids or whatever the next step is.  It usually "cures" the supposedly refractory Celiac, which is fabulous!  No one really wants to go to treatments for that.

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. 

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