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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Please Don't Let It Be Coffee
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22 posts in this topic

I recently tested positive on a celiac blood test but negative on a GI biopsy. I went on a gluten-free diet for 2 weeks before consulting a nutritionist and then decided to try an elimination diet (no corn, soy, eggs, legumes dairy, yeast, nightshade veggies, alcohol, added sugar, or of course, gluten) with a hefty dose of daily probiotics. She would have preferred that I give up caffeine as well, but that was the one food I have found nearly impossible to give up.

 

The trouble is, I find that on days where I do have a cup of coffee, I'm getting the same bad digestive symptoms I had when I was on gluten. I'm hoping that maybe my stomach is just being overly sensitive now that my diet has radically changed, but after reading an article about molecular mimicry and certain food proteins causing people to react the same way they do to gluten, I am freaking out. I'm feeling horribly, horribly depressed. I really am ready to give up anything and everything other than coffee. Has anyone had this issue and found a away to make their stomach more tolerant to coffee? Some sort of enzymes or probiotics? I would be willing to give it up temporarily if it meant I could drink it in the long run. I am willing to do just about anything to be able to handle coffee. Please give me some hope.

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I am happy to tell you that the vast majority of coffee is gluten-free......plain old coffee flavored coffee.   :)   The "cross re-activity" theory has no basis in reputable science.

It seems to be making it's rounds on the internet but I wouldn't give that any credence.  Coffee can be an irritant to the GI tract and if you are new to the diet, that might be the problem.  It's not from gluten. 

 

I wouldn't give up coffee either.  Love the stuff!  I just limit the amount I drink but I never gave it up and I healed just fine.  Maybe switch to tea or something else temporarily for a few weeks and try again?  Hang in there and rest assured that you will most likely be able to drink it again without issue.

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Do you add milk to your coffee?  Perhaps dairy is causing a problem?

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I can't drink coffee either, don't understand why. I quit for a few months tried it again and can't tolerate it, don't understand it and I miss my coffee. I drink hot tea now but not the same at all.... I WANT MY COFFEE!!!!  :(

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I am happy to tell you that the vast majority of coffee is gluten-free......plain old coffee flavored coffee.   :)   The "cross re-activity" theory has no basis in reputable science.

It seems to be making it's rounds on the internet but I wouldn't give that any credence.  Coffee can be an irritant to the GI tract and if you are new to the diet, that might be the problem.  It's not from gluten. 

 

I wouldn't give up coffee either.  Love the stuff!  I just limit the amount I drink but I never gave it up and I healed just fine.  Maybe switch to tea or something else temporarily for a few weeks and try again?  Hang in there and rest assured that you will most likely be able to drink it again without issue.

Gemini, you are the second person today to caution me against the cross-reactivity theory, so I am going to calm way the hell down and hope that you're right. Thanks for the much needed dose of realism/optimism. 

 

Out of curiosity, how long did it take you to heal on a gluten-free diet? I've only been off gluten for a month, so maybe I'm being massively impatient, but I'm really tired of always having stomach pain. 

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Do you add milk to your coffee?  Perhaps dairy is causing a problem?

Nope. No milk. Spoils the taste. :)

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I used to drink tons of coffee.  Gave it up when I quit smoking.  But when I was last tested for food intolerances, I tested as intolerant to green coffe.  I would assume that would mean roasted coffee too.  I don't know.  Haven't tried any coffee since.  Don't know that this is your problem but it could happen.  You might try switching to strong tea for a couple of weeks and see if things get better.

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Gemini, you are the second person today to caution me against the cross-reactivity theory, so I am going to calm way the hell down and hope that you're right. Thanks for the much needed dose of realism/optimism. 

 

Out of curiosity, how long did it take you to heal on a gluten-free diet? I've only been off gluten for a month, so maybe I'm being massively impatient, but I'm really tired of always having stomach pain. 

 It can take a few months to a couple of years to heal.  Be patient!   :)   I had a little trouble in the beginning with coffee, but I recall just skipping one day!  Instead, I just limited it to one savory cup.  In a few weeks, I was back to my two to three cups a day.

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I'm a one cup a day person. I can't survive without that, but if I have too much i get jittery and my stomach isn't happy with me. It's more the acidity level, which is actually reduced by putting milk in it (if you have problems with dairy, try almond. very tasty). If you're still healing, then your stomach is more sensitive and can't handle too much. Go easy on it, but it's definitely not going to "gluten" you.

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Hi, Dr David Clark , youtube name is 'clarkchiro'  talks about certain brands of coffee having a cross reaction for gluten antibodies. 

he has a video on it.  " foods that cross react with gluten sensitivity" 

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Hi, Dr David Clark , youtube name is 'clarkchiro'  talks about certain brands of coffee having a cross reaction for gluten antibodies. 

he has a video on it.  " foods that cross react with gluten sensitivity" 

 

 

He's not actually a medical doctor, is he?  Associated with any of the Celiac research Centers?  No.  I could call myself a doctor and put a Youtube video and say the opposite of this guy.  Hmmm.....Maybe I should! 

 

 

this is from actual MD's that research Celiac Disease.

 

http://www.cureceliacdisease.org/archives/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity

 
"What’s with all the talk about certain types of food causing “cross-reactivity?”

There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue."

 

 

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Gemini, you are the second person today to caution me against the cross-reactivity theory, so I am going to calm way the hell down and hope that you're right. Thanks for the much needed dose of realism/optimism. 

 

 

 

well, Karen told you just now and so, I'll be the 4th to tell you the cross-reactive theory is just that....a theory. :)

Many celiacs drink coffee and we are fine. Your gut is still healing, so it may just not be liking the coffee just now.

I could not drink coffee, alcohol, citrus and eat a bunch of things when I was very sick and just DXed.

It gets better. I promise.

 

One month is just the beginning of your healing, hon--so hang in there .

We all take different rates to heal. 

Try to be patient and we'll keep cheering you on.

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I can not tolerate coffee either, but....it's because coffee (caffeine more appropriately) is an inflammatory to the body. Maybe that's the issue?
Maybe if you just love the taste of coffee and it's not the caffeine, try decaf coffee, see how you do. :)

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Components in coffee are not structurally similar to gluten.  Coffee isn't even a similar plant.

 

If you have problems with coffee, it can be because it is hard on the stomach.  It has been found to be contaminated with barley in some cases which could also be the cause of your problems: http://www.usp.org/food-ingredients/food-fraud-database

 

I buy whole beans and grind them myself to cut down on that possibility.

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I have been gluten-free for many years and am surprised by the places you find cross contamination. I've worked in restaurants for 15 years and can certainly attest to the fact that most times, you are risking some kind of problem. 

 

What does this have to do with coffee? Last summer, I worked for a place that also owned a coffee shop. It was a high end chain of cafes that boasted roasting their own beans. Well, the place where the beans were roasted and the person doing the roasting we definitely causing cross contamination! Another product was also being made using the grinder and a thickener was added to that - the thickener containing gluten. The practices were sloppy and the grinder/facility was not properly cleaned between uses. I found this out when I could find no other source of my sickness beyond the coffee. So, unless you grind yourself from beans that the company assures you are gluten free you risk cross contamination. I know people this doesn't bother. Me, I'm very sensitive to cc! Everyone is different.

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You mentioned you were avoiding corn too, yes?  If corn turns out to be a problem, and you are very sensitive to it, coffee may be corn contaminated, as well. Corn can be used during the processing of the coffee; the polishing process, if I recall right. :-/

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I did post that cross contamination thing. I do not believe it now. I was having problems with tea. Someone told me that was the reason. I am 3 months in. I am back to drinking tea just fine. Sometimes when your grasping at things to find a reason. You grasp at the wrong thing. Thats what I did. I apologized. I just grasped and took it as the truth, but it is not the truth. I have since learned that. Ok I am going to go enjoy drinking my tea now :) 

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well, Karen told you just now and so, I'll be the 4th to tell you the cross-reactive theory is just that....a theory. :)

Many celiacs drink coffee and we are fine. Your gut is still healing, so it may just not be liking the coffee just now.

I could not drink coffee, alcohol, citrus and eat a bunch of things when I was very sick and just DXed.

It gets better. I promise.

 

One month is just the beginning of your healing, hon--so hang in there .

We all take different rates to heal. 

Try to be patient and we'll keep cheering you on.

Thanks for the support and encouragement. It's frustrating being in pain so much of the time, but I'm hoping you're right and that it gets better. Thank you. 

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I have been gluten-free for many years and am surprised by the places you find cross contamination. I've worked in restaurants for 15 years and can certainly attest to the fact that most times, you are risking some kind of problem. 

 

What does this have to do with coffee? Last summer, I worked for a place that also owned a coffee shop. It was a high end chain of cafes that boasted roasting their own beans. Well, the place where the beans were roasted and the person doing the roasting we definitely causing cross contamination! Another product was also being made using the grinder and a thickener was added to that - the thickener containing gluten. The practices were sloppy and the grinder/facility was not properly cleaned between uses. I found this out when I could find no other source of my sickness beyond the coffee. So, unless you grind yourself from beans that the company assures you are gluten free you risk cross contamination. I know people this doesn't bother. Me, I'm very sensitive to cc! Everyone is different.

Wow! Good to know. I do have a coffee grinder at home and like to grind my own beans because it tastes much better, but the coffee at my work place is pre-ground. I'm trying to avoid coffee altogether for a couple weeks until my stomach stops hating me.  

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Well Karen, Dr Clark is actually a chiropracter with advanced degrees in functional neurology.

I have found his videos quite informative and i think he is head and shoulders above most of the "medical" doctors I personally have seen.

 

 

 

what he does say is that  " instant" coffee has an ingredient that cross reacts with gluten antibodies. 

personally, i can say i tried some instant coffee and a short time later experienced brain fog, so that's it for me and instant coffee.

 

here is the link to his video on youtube where he talks about it.

 

 

 

 

 

 

He's not actually a medical doctor, is he?  Associated with any of the Celiac research Centers?  No.  I could call myself a doctor and put a Youtube video and say the opposite of this guy.  Hmmm.....Maybe I should! 

 

 

this is from actual MD's that research Celiac Disease.

 

http://www.cureceliacdisease.org/archives/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity

 
"What’s with all the talk about certain types of food causing “cross-reactivity?”

There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue."

 

 

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Just because you choose to believe some guy on the internet - it doesn't make him a doctor or a valid Celiac researcher.  Until a reputable source proves "cross-reactivity", I will continue to call it "baloney".

 

Just an interesting fact, at the International Celiac Disease Symposium, they served lots of coffee as well as repeated that they have no evidence of "cross-reactivity".  In fact, the rep for the lab that starts with a C and does all these bogus cross-reactivity tests admitted that - when they checked the instant coffee that "cross-reacted" they found it had wheat in it.  So it wasn't a cross-reaction at all.  They seem to be backing down from the coffee theory.

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I found I have an intolerance to coffee, tea, cola etc. Nothing to do with gluten, in fact I found out about the coffee thing long before I knew about gluten as an issue.

Just a thought for another explanation.

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