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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.

Help? With Coffee?
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25 posts in this topic

Can anyone help me sort through the mass of opinions on coffees. From what I am reading starbuck, gevallia and maxwell house may have trace amount despite their being 100% coffee. But I read other posts where folks say some of the above are garanteed gluten-free

 

I feel like something is dosing me and I drink up so a 8-10 cup pot a day some days so even trace amoutns would be my best guess for whats making me feel sick despite being gluten-free now. I haven't toasted bread yet, or shared cuttign boards. The only thing I have shared was pots after being cleaned in soap and hot water, so coffee seems to be the most viable culprit of my continued issues

 

I would appreciate any thoguhts or information on how to find a brand that is a safe gluten-free brand. I really really prefer dark roasts but of course I prefer not having fog on the brain and feeling weak and dragging all day or being glued to the bathroom

 

Thanks in advance. I must say it has been such a relief to find so many resources such as this on the web these last couple months. I can't imagine how hard it must have been for some of you veterans before technology.

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Coffee is harsh on your system. If you are just starting and healing, that alone might be the reason why you are having issues with it.

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Can anyone help me sort through the mass of opinions on coffees. From what I am reading starbuck, gevallia and maxwell house may have trace amount despite their being 100% coffee. But I read other posts where folks say some of the above are garanteed gluten-free

 

I feel like something is dosing me and I drink up so a 8-10 cup pot a day some days so even trace amoutns would be my best guess for whats making me feel sick despite being gluten-free now. I haven't toasted bread yet, or shared cuttign boards. The only thing I have shared was pots after being cleaned in soap and hot water, so coffee seems to be the most viable culprit of my continued issues

 

I would appreciate any thoguhts or information on how to find a brand that is a safe gluten-free brand. I really really prefer dark roasts but of course I prefer not having fog on the brain and feeling weak and dragging all day or being glued to the bathroom

 

Thanks in advance. I must say it has been such a relief to find so many resources such as this on the web these last couple months. I can't imagine how hard it must have been for some of you veterans before technology.

I think to answer your question, you should tell us where you are regarding testing, symptoms, dietary issues and duration.  Coffee is gluten free.

 

If you are in an office situation, supply your own coffee.  And not too sure your fog

and dragging feeling is due to your coffee intake. :rolleyes:  You might want to keep a food journal for a while.

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Coffee is gluten free; however, if you are a "newbie", caffeine can cause symptoms (certainly 8 to 10 cups a day).  

 

http://celiacdisease.about.com/od/Gluten-Free-Beverages/f/Is-Coffee-Gluten-Free.htm

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I have read that coffee contains a protein mimics gliadin... that our bodies interpret as gluten- therefore it can trgger the same symptoms. Since going off coffee (even decaf) I feel much better. Good luck to you....

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I have read that coffee contains a protein mimics gliadin... that our bodies interpret as gluten- therefore it can trgger the same symptoms. Since going off coffee (even decaf) I feel much better. Good luck to you....

There is no real medical evidence for that. Some one who calls them self a " Home Economist" is not a legitimate medical or scientific source.

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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Coffee in a facility that possibly cross contaminated ??? Maby call the company ? Ask if it is cross contaminated? 

I am a tea drinker, I hear Tea can be cross contaminated. This all can be so darned confusing!! 

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Thanks everyone. Well I found a copy of a response from gevalia customer service and starbucks. Gevalia said there are trace amounts of gluten. And starbucks says who knows some do lol. I haven't found any company responses about gluten making it's way into maxwell house. I realize it's naturally gluten free but it would seem some have cross contamination issues, and supposedly starbucks adds "solid"? gluten to some...the starbucks repoorts were wacky because one person received two different responses on two seperate occassions of calling starbucks and her report of her conversations was as close as I could get to investigating starbucks.

 

One indivual called 8 o'clock coffee and they were adament that it's gluten-free so I figured I would try that

 

Thank you for the other ideas, I guess I've been drinking coffee so long and people joke about my stomach of steel that i didn't think twice that coffee alone, regardless of gluten could be irritating it. If the brand swap doesn't work maybe I can try tea, but oh boy that will be tough

 

Regarding testing etc. In 2009 i was told I should some elevated levels but not enough to be celiac...being i try to avoid web searching my issues too soon i had no idea that my cutting out wheat on suggestion from a friend before the test likely affected my results. I was probably still consuming some gluten but absolutely no breads pastas and wheat to see if helped....when he said "ahh it's just sensitivity and IBS youre fine" I went back to my wheat rules the world diet, like a zombie i fell in line believe white anything was trash haha. So ironically enough uninformed about my testing prob being off with the month of no wheat before, i went back to my ways, the last 2 years I lost 10 pounds and My body always always loves 5'77"135, period...i can even gain to 140 easily...being stuck at 125, cramming in extra mil;kshakes at every meal and fighting to gain weight to no avail...the last year my stomach has been worse, the last 6 months i could bear it, doubled over in pain and tied to a bathroom...i let it go on a while because i have a rare spinal cord thing and it can cause bowel stuff with too hyperactive or the opposite, sluggish so in order to keep myself from assuming the identity of a sick person sometimes im too dismissive of sickness or new symtpoms not wanting to worry i attribute them to my cavity in my spinal cord, etc...so finally a freidn interveined and reminded me their femal friend at my age, 32, had the same problem, weight loss, doubled over, in the bathroom, feeling wasted and brain fog, I felt like I did 8 years ago when I have a severe eating disorder which is crazy because I was eating 3000 calories to try and gain weight and still felt malnourished physically and mentally

 

I couldn't get into the GI for a while so I said forget the testing i don't care if I can feel better and not like a train hit me every day I want to feeel better now..and oh my goodness, aside from the one time i cheated and paid dearly I haven't been doubled over in over a month and I can't remember the last time. I have had a little discomfort sporadically and while a huge amount of fog has lifted and i feel better, i still feel half in the bag and undernourished so looking at my diet all i could think of was cross contamination in my house or coffee because i've been very careful after my one cheat night doubled me over and left me in the bathroom for a day

 

I can't believe i didn't realize this was going on 6 months ago haha but so far I've gained 5 pounds in 1.5 months and feel 75% better than the last 6 months or year ...gosh even to be able to use the bathroom like a normal person, i feel like I have never known what that's like lol.

 

Recoverying from a ED, and so many years of restriction i HATE being restricted now, i love my freedom in my food and weight etc. So I was expecting me to have a difficult time with will power but to be honest i was in so much pain and so sick that i don't ever feel like i want to eat any of it because all i can feel and imagine is that gripping stomoach pain and cramps and the train hit me feelign the next day, like i got drunk the night before. And I'm eating better just because I am forced to prepare more and plan more for meals. I'm pretty laid back usually and eat a lot but whatever i want so on top of everything else I am even feeling a little proud of myself for eating more veggies and fruits, rice..instead of huge bowls of just pasta haha (a kathi typical meal)

 

don't know if that's to long lol, but that's my non tested how I got here story. I really really appreciate so many of you taking time to answer my questions, and my friends friend who sent me a gluten-free fact sheet, bewares, do's and don't lol. I always love seeing communities of people supporting each other. I have a small group who have my spinal cord condition (syringomyelia) and it's a blessing to have support in both areas now. Have a good night everyone. I

 

I am may try to call the aboive companies and if I get anything I would post it and tag it for others wondering the same :)

 

Kat

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 I love fresh brewed ,fresh ground (unflavored ) Coffee :wub:  ,, I ♥ mine black but I am sure you have checked anything you add to your coffee ( creamers , sugar ect. are a potential source of CC  and /or gluten ..)

 

Even though gluten free,  coffee was causing issues for me .  ( but EVERYTHING was at that point )     I eliminated coffee altogether ( horrible thought  I know ) for an extended period  (during my elimination diet and for quite some time  after )while my gut healed.

I have since reintroduced coffee with no issues

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Coffee in a facility that possibly cross contaminated ??? Maby call the company ? Ask if it is cross contaminated? 

I am a tea drinker, I hear Tea can be cross contaminated. This all can be so darned confusing!! 

tea can be flavored  so stick with a brand that does not make you ill and always  ,always check the label

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I thought coffee was ALWAYS safe, but learned the hard way that it can be CC'd in the same way that anything else can be!

Every time we went to the in-laws, we refused all food and I would volunteer to make the drinks so that I could inconspicuously wash the cups......and yet every time I would end up with all my glutening symptoms.

In CSI mode, lol, we quickly worked out what had happened. The coffee at hubby's parents is contaminated.....how? She likes to drink "Barleycup" and Horlicks, both are gluten containing drinks. It doesn't take much to work out that when she makes herself and her husband a drink, she puts one spoon of horlicks into a cup, then dips the same (dry) spoon into the coffee to make hubby a drink. Possibly, lots of times. Voila, coffee now laced with gluten. Pity I didn't think of that before......

 

Any chance of that happening?

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I remember the Gevalia thing.  They just kept insisting they have gluten in their coffee even though they don't list it in the ingredients.  I think its probably like Starbucks - they don't test for gluten so they won't say gluten-free.  Doesn't mean there is any gluten in the coffee.

 

I drink starbucks and any other brands.  But if coffee is bothering you, for whatever reason, stop drinking it.

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I drink plain, unflavored  coffee from DD, Starbucks, and just about any restaurant or friend's home  I have ever gone into and I have never had a problem. 

 

Gluten in coffee is extremely rare (those barley coffees are the exception) and if you look at the list from that first teenage blogger you posted, you'll notice he is listing many chocolate drinks, cocoa, etc. as having gluten.

That's not coffee, really.

 

More likely, the issue is your gut is bothering you from........ too much coffee! 8-10 cups is abrasive on the gut.

and acts as a diuretic.

 

Cut back......... and drink more water?   :)

 

The cross-reactivity thing is baseless nonsense and cc issues get overblown sometimes. People blame symptoms on gluten all the time, but sometimes things other than gluten are the cause. We can feel crappy from too much ice cream, sugar, wine, beans or caffeine for example.

 

Hope you feel better soon!

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tea can be flavored  so stick with a brand that does not make you ill and always  ,always check the label

Ty so much!! I will look mine up!! I drink Cardemon  tea <-spelling , I usually buy it on line! I actually do think the brand I usually drink does have Gluten in it,(Now that I think about it) I usually run to rest room after drinking a couple of cups, always blamed it on Caffeine, Now I am out of that kind ,drinking something eles , lo and behold no running to the rest room!! I will def be investigating!! TY so much...

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I think the thing with Starbucks is that some of the "coffees" you can buy at their stores with all kinds of flavorings and other stuff might have some gluten in them. But just plain old coffee doesn't have gluten. I never gave up my 8 cups a day and it never bothered me at all, but you may have had more damage than I did. Cut back for a while. They SAY that after two cups you have already gotten all of the "wake up" you will get and that all the rest just gives you nervous stomach.

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Do you also drink flavoured coffee in Starbucks? Like white mocha or nut latte or mocha frappuccino?

I live in Turkey and the Starbucks here has no idea about gluten so I try to explain it all the time but still do not trust their cleaned equipments used for frappuccinos.

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Coffee is gluten free.  I've heard that people who react to gluten can also have problems with dairy.  We are vegan so I wouldn't know, but do you think there might be a problem with milk? That much caffeine would give me tummy problems.  Caffeine is a diuretic.

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What I do to cut down on cc possibilities is to buy whole bean unflavored coffee and grind it myself.  I had to buy a grinder, but fresh ground coffee is better anyway and pushing the button on the grinder isn't too much of an effort.

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 fresh ground coffee is better anyway and pushing the button on the grinder isn't too much of an effort.

 

agreed..... and it smells good too. :)

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My husband it Gluten intolerant & he can only drink Nescafe instant coffee he loved going to tim horton's but can't drink there coffee he has the same reaction to it as he does if he has wheat or anything to do with wheat products he tryed max well house coffee in our coffee maker but still got sick from it he did use folgers but said it had a weird taste to it so if anyone can help with what might be good for him that would be great.

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My husband it Gluten intolerant & he can only drink Nescafe instant coffee he loved going to tim horton's but can't drink there coffee he has the same reaction to it as he does if he has wheat or anything to do with wheat products he tryed max well house coffee in our coffee maker but still got sick from it he did use folgers but said it had a weird taste to it so if anyone can help with what might be good for him that would be great.

See I've read about this from multiple people who try different coffees and find they only get sick with certain brands. I guess CC makes sense but I can see how the other poster said it gets overused (CC). I guess having spent have of my life enjoying my coffee I'm doing a *hopeful dance* that my discomfort is brand specific lol and not the coffee as others have suggested. Problem is they could be right haha. It's very probable that with eliminating something that gave me stomach pain and issues daily has allowed me to differentiate the discomfort that is due to good old plain caffeine and an abundance of it. glad you hubby found a brand that works. 

 

What I do to cut down on cc possibilities is to buy whole bean unflavored coffee and grind it myself.  I had to buy a grinder, but fresh ground coffee is better anyway and pushing the button on the grinder isn't too much of an effort.

I never thought of this but makes a lot of sense. I'm guessing that in many places CC can occur in the grinding phase. Curious what type of grinder? mine is fairly small (magic bullet type of grinder) So I have to do two rounds for a pot and it so finely ground it clumps together and is a little bit of a productions to get off the edges and mash the clumps. 

 

Coffee is gluten free.  I've heard that people who react to gluten can also have problems with dairy.  We are vegan so I wouldn't know, but do you think there might be a problem with milk? That much caffeine would give me tummy problems.  Caffeine is a diuretic.

I haven't noticed an issue with milk, thank you god lol. I LOVE a huge glass of milk to wash down every meal haha. I think gluten-free would be traumatizing if it included eliminating dairy :) From what I read the lactose intolerance is more due to the damaged gut as after sufficient gluten-free time to heal a person can better handle the dairy. Is this true?

 

I think the thing with Starbucks is that some of the "coffees" you can buy at their stores with all kinds of flavorings and other stuff might have some gluten in them. But just plain old coffee doesn't have gluten. I never gave up my 8 cups a day and it never bothered me at all, but you may have had more damage than I did. Cut back for a while. They SAY that after two cups you have already gotten all of the "wake up" you will get and that all the rest just gives you nervous stomach.

You know I hate to admit it but you are probably so right on the mark @ 2cups. Often I think the benefits of my coffee are psychosomatic and associative after a certain point :) more so than it really is helping me perk up. After all the discussion I am definitely going to try cutting it way back even 2 cups in the am and one in afternoon would be an improvement, sad eh? ;).

 

While I don't think it's outlandish to think some may be sensitive to CC as I konw a person who gets really ill from CC. But I think many are right that it could be merely an abrasive thing that has nothing to do with gluten. I don't doubt there is a great deal of damage in my stomach as I've struggled unsuccessfully until gluten-free, for 2.5 years to put on weight (a problem I never ever had my body always finding it's set point in the 135-140 range) and every time I ate I was doubled over. We sadly bought the whole wheat everything is the best and literally had a wheat version of everything that was available lol...Even for non celiacs that's probably not the healthiest so if nothing else I have learned to not fall in line and blindly follow the extremist nutritional hype

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As mentioned, we're vegan, so we don't have milk, eggs, honey or any meat or other animal byproducts but I do know a lot of coeliacs who also cannot tolerate dairy whether that be from lactose intolerance or a caseine sensitivity.  That's a hell of a lot of coffee though so it could be over-consumption of caffeine causing issues.

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Coffee has sometimes been found to fraudulently contain barley.  http://www.themedifastplan.com/main/online-database-helps-consumers-detect-and-avoid-food-fraud/

 

That might be the cause of some people's issues.

Then buy whole beans and grind at home or in the store.

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    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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