Gluten Dude

There’s a reason for the three question marks above. This seems to be an issue that just won’t go away.

I used to think coffee was just weird.

And that the people who drank coffee were weird.

Growing up, my parents had this old-fashioned coffee pot and every weekend morning, it seemed a big production just to make this ‘brown stuff that smelled funny’.

Occasionally, I would try to act like a big-boy and join my parents in a cup of coffee. But of course, I would load it with 9 tablespoons of sugar and a half-gallon of milk. And the taste still repulsed me.

Fast forward to my early twenties and my roommate in New York City would start every morning grinding his coffee beans, waking my ass up from a deep slumber, and all I could think was “Really…a cup of coffee is worth this much effort and noise??”

Being that I was bartending back in those days and usually didn’t get to sleep until the wee hours, it was not a welcoming sound at 7am.

I simply did not understand why people drank coffee.

Until I started drinking coffee.

And then I got it.

Boy…did I get it.

And for the past twenty years, not a morning has gone by where I have not had a cup of joe (or 2…or 3).

I love everything about it. The aroma, the routine, the caffeine kick.

When I was diagnosed with celiac, my first two questions were “Can I still drink alcohol and can I still drink coffee?”

Thankfully, the answers to both questions were a resounding YES!

But recently, there have been some reports that perhaps those with celiac disease should not drink coffee.

I feel like this issue has been debunked by all of the celiac experts over the years, but the topic still comes up annoyingly often.

Somebody on Facebook sent me an article titled “Gluten Issues or Celiac: Don’t Drink Coffee” (link). Here’s what they say:

“In a nutshell, fairly recent lab research has revealed that 10% of coffee is a protein that cross reacts with gluten antibodies.”

Judging from the 194 comments left on that article, it seems that many celiacs are now on suicide watch because of this.

Now…did the article provide ANY medical proof to back up its facts? It did not.

Plus the article says it’s still possible to be gluten sensitive and not cross react to coffee.  But you’ll have to do some expensive lab testing with a knowledgeable doctor to find out and they link you to some Lab Testing website.

So honestly, the article seems like a load of crap.

But other articles I’ve read say that while coffee may not contain gluten, it can cause the same reaction as gluten to those with celiac disease.

So tell me wise celiacs…

CAN I GO MAKE A CUP OF COFFEE OR NOT??

102 thoughts on “Hey Celiacs…Should We Drink Coffee???

  1. I still drink my one 20oz half decaf half regular everday. I usually buy it at WAWA so I know what I am getting. DD sometimes slips me all regular. I am not giving it up. But, i have been alcohol free since November 2011 because of my stomach and liver damage.

    I say yes. Have your cup of Joe. It’s one creature comfort that still remains for us.

  2. I was told by my doc (one who I actually trust) just to watch out for flavored stuff, because that is where gluten tends to hide in coffee. Regular coffee, though, should *theoretically* be okay. I have a Keurig, and I use Green Mountain because even their flavored coffee is GF. I think sometimes all it takes is one person taking a CYA statement out of context to set off a whole witch-hunt scale event. Gluten is evil, yes, but maybe not EVERYTHING else?

    At least, that’s what I hope. Because if I have to give up coffee, all hell WILL break loose.

      • I ditched coffee as part of my Whole30 month and am two weeks in. Yes, I miss it. But actually not as much as I thought I would (once the headaches went away). But I will return…with a vengeance.

        • I think it depends on how sensitive your body is. As long as it’s a plain brand that is made at a safe place, and processed out of reach from other wheat stations it should be fine. Though if it is grown nearby a place where wheat is grown, or processed in a building where it can become contaminated it might cause pain.

          Take a 30 day period off and stick to what you know is safe, then introduce it back in to see if it works. Won’t be hard to tell if it’s ok or not :)

          Personally love coffee, but giving it up for a healthy life is worth it in my book. Can’t really say I’m that good with sticking to a strict diet just yet as I’ve been sick for many years. I guess it’s just a choice one have to make, just make it while not contaminated. It’s easy do the wrong thing when in the fog. Good luck x)

          • I think a lot of people have missing the point. Coeliac disease is NOT AN ALLERGY OR AN INTOLERANCE although some people think it is either one or the other. It is actually an autoimmune disease and as such even trace amounts of gluten can continue to exert long term effects on the body even when there are no apparent problems. Even the smallest amounts in the system can trigger, for example memory problems, thinning hair and possibly even diabetes and bowel cancer. The effects of gluten are known to last several weeks or even months after consumption of gluten has stopped. This is why it is such a problem. As an former state registered (UK) dietitian AND a coeliac this is why I think good compliance at all times is so important. I for one wish to avoid any of the long-term potential complications. Just because you feel OK does not mean there are no issues. Personally I am not prepared to play Russian Roulette with my health.

  3. I give up coffee and go back on it – give it up and go back on it – I have not noticed a difference when off… I gave it up once for a month – no change.

    Calling Irish Heart – I bought the Enzymedica Digest Gold – it has helped immensely!! I take one a day and most of the rumbles and burning have gone away. Thank you so much for sharing.

  4. Does one cup of good, high-end coffee with a healthy option for “cream” bother you?

    I drink 1 big mug of organic coffee with a splash of organic light coconut milk every morning. I “get” your comment about loving everything about your cup of coffee. I love my mug, I love my good coffee, I love the smell, and I love the mix of coconut milk from its BPA-free can. It’s the first thing I do in the morning. I love everything about it. I even bring my own little coffee making set up, coffee, and coconut milk when I travel. It’s a bit of a pain, but worth it. The first thing I do when I check into a hotel is ask for a complete set up of dishes (I bring a lot of my own food, too). I hate drinking coffee from a plastic cup. I want a real mug.

    SO — I have found no compelling scientific evidence that people with celiac should give up coffee.

    “In a nutshell, fairly recent lab research has revealed that 10% of coffee is a protein that cross reacts with gluten antibodies.”

    Really? Where is the “fairly recent” lab research? They tested all coffee? My coffee?

    BUT since we have touchy digestive systems, we should go for the high-end stuff and only drink one or two cups. Choose organic coffee, choose organic, dairy-free “creamers” and not that fake stuff, drink in moderation, and enjoy it. There are so many variables that it’s hard to say coffee is evil. Some versions might be, but overall, I don’t believe it should be on the “do not touch” list for people with celiac disease. Just my opinion.

    I did a blog post ages ago on this topic. I’ll see if I can dig it up and send you the link.

    Gosh, life is about enjoying the little things, so if you don’t have to give up the pleasure you get from this simple ritual, then don’t. Again, just my humble opinion.

    Have a good week, GD.
    Melissa

    • Melissa said:

      “I have found no compelling scientific evidence that people with celiac should give up coffee.”

      I agree (me neither, and I have looked) .

      P.S. I am reading your book The Gluten -Free Edge (that you co-wrote with Peter Bronski) and as someone whose muscles, tissues, tendons and bones/joints were horribly impacted by long-unDXed celiac, I am trying to rehab my body and I find your words inspiring. :) I never give up hope that I can do all the things I used to do some day.

      Thanks for all you do for the celiac/gluten free community. :)

      • Oh, Irish Heart, thank you, thank you!! I also had terrible joint pain, but an anti-inflammatory, GF diet and restorative yoga saved the day. It took some time and when I stray from anti-inflammatory foods (which I rarely do), I pay the price. Sorry for co-opting your blog post, GD, but I had to respond. =)

        Good luck, Irish Heart!
        Melissa
        PS: I’ll look for the link GD. Unfortunately, I don’t follow keyword-rich protocol. I name my posts bizarre names and then can never find them again.

  5. I recently read that Gevalia will not certify that their coffee is gluten-free. Unfortunately, I cannot remember where I read this. I do know that Caribou will certify theirs.

  6. Since starting the whole foods September challenge, I have been more in tune with what bothers my stomach and what doesn’t. Coffee seems to be fine as long as I don’t overdo it (which I am prone to do). 1-2 cups in the morning is fine for me, any more than that can get me into trouble.

    I say see how you feel when you reintroduce it at the end of the month.

    As for cross-reaction, I haven’t seen enough evidence to make me quit my morning habit. I seriously LOVE coffee and get excited to go to sleep at night JUST so I can get up and have coffee in the morning. :)

  7. When I did an elimination diet a few years ago, coffee came up as one of my big no nos.

    I’ve tried 2 or 3 times since, it still kills my stomach.

    You are in a great place to find out – when you start reintroducing foods, try it(you know thd drill, only one thing at a time, so maybe not dunking the tequila cookies I know you have lined up). If you are ok, drink it.

    I’d drink it if I could. I’d go with the advice to drink the good stuff, but only because life is too short to drink bad coffee.

    I know nothing at all of the evidence on this one, we all have make our own way through the jungle.

    Opinions over x

  8. I gave it up and have no issues doing it. Yes there are things that I miss about it but the only way that I’ve found that it doesn’t bother me is when I drink a less acidic coffee which I don’t enjoy. I’ve tried a brand from Whole Foods. I think what it comes down to is just like everything else, make sure it’s GF, listen to what your body is telling you and if you don’t feel well when you drink it, you should probably give it up. In the end what does it matter what the experts say? They don’t know your body, only you do and it’s going to be different for everyone. I’m pretty sure that even if I drank a GF coffee that was pretty acidic it would still bother my weak stomach.

  9. I love my cafe con leche. I live in Spain where every other store is a cafe. I’m seriously addicted to it. I’ve cut down to 2 a day sometimes 1. Coffee does aggravate my stomach. I just refuse to give up thinking “MY BODY WILL GET USED TO THIS.” I”m trying to force my body to get used to it when in reality I know that I have to cut it out. I used to drink 4 cups a day so i’m down to 1-2 and that’s pretty good. My stomach does hurt afterwards but just a little and I can tolerate it. When I don’t have my coffee I get migraines and i’m very aggravated so that’s when I give in and have my coffee.

    Maybe for some there is no reaction but I do know that I need to cut it out of my diet because it does aggravate my stomach a little.

    • That’s the thing Bianca. How much do we continue to give up to try to lead a 100% pain-free life? If coffee definitely had gluten, of course you give it up. But if it just doesn’t agree with you, but you still get so much pleasure from it (kind of sadistic in a way), do we make the sacrifice?

      At what point do we say “This hurts, but I’m not giving it up.”

      • I have a nepresso machine and my capsules say “gluten free!”

        There are times where I eat at home all week and i’m very careful and my stomach just wants to act up for no reason. The pain is so intense I’m curled up screaming and yelling so having a little upset stomach for 2 minutes after a cup of coffee is worth it to me. It doesn’t hurt too bad just a little annoying but coffee is one of those things I don’t want to give up I feel like I’ve given up so much is it asking too much to have this one thing.

        • It’s not gluten, it’s caffeine and acid. If it’s making you feel this bad, give it up for a few months. Why suffer???

          The reason you are getting headaches from not drinking it –is because of caffeine withdrawal, honey!

    • A lot of people have trouble with coffee because of the acidity. Try cold brewing it, it cuts the acidity down to 30%, or so. I couldn’t have coffee at all with normal brewing, but now i can get away with 1, or 2.

  10. a gluten free diet hasnt been ENOUGH for me .( but must be and am still gluten free) since im learning bout other food sensitivies involved i listen better to my body and live a life of trial and error and this has been the best for me. i love coffee but can only have it in small amounts, however didnt know some wasnt gluten free :(

  11. “In a nutshell, fairly recent lab research has revealed that 10% of coffee is a protein that cross reacts with gluten antibodies.” Maybe the recent research, like a lot of other research was on mice and not real people and perhaps in really excessive quantities like so much other research that has “indications” that we should not eat, drink or enjoy whatever “it” is that is being researched! I am skeptical about it. I wouldn’t give it up until there is more realistic research and information.

    I traveled the coffee route from yuk to awesome like you. I don’t know what I would do without that ritual/boost today! Let us know how you feel when you introduce it back. Good luck!

    And just a little cheer for your Whole30 diet since I missed it the other day. GO DUDE! KEEP UP THE GOOD WORK!!! I can’t imagine how hard it is. We’re here for you!

  12. You told my story exactly. I never drank coffee until I was in my late thrities – and then it was because I wanted to be a “big girl” and drink it with everyone at work. Now I love EVERYTHING about my coffee. My favorite coffee now is Don Franscisco Hawaiian Hazelnut and they have assured me that all of their coffees are gluten free. OMG – so very good! Lord, please don’t make me give up coffee too….

  13. When I’ve been “glutened” I cannot drink coffee at all. Once the gut is back to “normal” whatever that is, I can tolerate coffee. I did buy some decaf to see if that worked better for me and I had huge gut issues, the brand was Seattle’s Best, decaf level 3. That stuff kills me.

    I put the coffee maker on auto, and wake up to the wonderful aroma of fresh brewed coffee. I love that!

    GD, at the end of the month, I will be lifting my cup of Joe and my glass of wine to you!

    (I just answered the security question wrong, need another cup of Joe!)

  14. I became very sensitive to coffee after being an addict who drank 4 cups in the morning and more throughout the day. I gave it up for 3 months. I tried it once in there and it upset my stomach badly. I also went through a week of a terrible headache withdrawing from the caffeine at first. I got into herbal teas and found a strong one at Trader Joe’s called Red Rooibos that I enjoy in the place of coffee. Now I drink one cup of decaf coffee in the morning, after breakfast, and that’s it. I feel free of an addiction that made me a monster if I didn’t get it and made me pee constantly. I find it a relief to put coffee in it’s place.

      • Irish tea, maybe….it is delicious and makes your socks curl,
        but otherwise…I did the green tea, oolong, peppermint, ginger…and herbals of all kinds….blech.

        Just My Humble Opinion, of course. Please, do not yell at me anyone.
        :)

        Cheers!!

  15. First-time commenter here…hello!
    I was a pretty hardcore coffee drinker for years. Before I figured out I had Celiac, my gut was always messed up so the coffee didn’t really bother me. Now that I think I’ve figured out what all my other food sensitivities are (potato being the biggest), I can have a cup of coffee, as long as it isn’t on an empty stomach. But then 3 years ago I also found out I have osteoporosis due to Celiac, and then got kidney stones this past February, so I avoid coffee like the plague now. I miss it, but after giving up so many things, I’ve gotten pretty good about being able to say goodbye and not looking back. If it makes you happy and doesn’t bother you, I say go for it! And have a cup for me, while you’re at it! ;)

  16. I would be a Celiac on suicide watch if I had to give up my coffee!
    I have never had an issue with my coffee, I just don’t drink the flavored stuff. All of these replies before me have been Great! I buy Starbucks and grind it at home.

  17. I get all my celiac information from my doctor (internist) and local RDs…Everything I find online I take with a grain of salt.

    I drink coffe just fine….The gluten free diet is restrictive enough without getting rid of the few things left for me to enjoy. Coffee…a good glass of wine…allowed grains…in moderation of course.

    I don’t go to chiropractors, naturopaths or any other any other bogus type of *doctor*. I figure if my insurance won’t pay for treatment from these people, they probably don’t have a whole heck of a lot of credibility. In fact, naturopaths are not licensed in my state…that tells me something right there!

    I suppose the only exception might be a chiropractor for back pain…but even then, I would try the physical therapist my Dr. recommends first.

  18. I have never had any problem with coffee. I drink it black – no sweetner, no whitener/cream. I drink it weak, strong, even warm it in the microwave if need be. I have half-caf at home and the real stuff at the office. Either is fine with me. I don’t care for flavors or fancy stuff so maybe that is why I never have a reaction. I think the plain kind is safe. I guess I’d survive if I had to give it up, but I surely do hope it never comes to that. Nothing better than fresh coffee first thing every A.M.

  19. I cannot give up coffee, I need it to be more awaker in the morning part of the day. Also, I get to use a line from one of my favorite movies, Airplane. When asked about cream and sugar, I, a married hetero white guy always says “black, like my men”. Yes, I am terrible.

  20. Have your coffee, sweets.

    Honestly, there is no scientific or medical evidence whatsoever that coffee is detrimental to celiacs.

    None! and if you all know me by now, from either here or on c.com. you know I HAVE RESEARCHED THIS TO DEATH. I am like a dog with a bone when it comes to issues like this one.

    Yes, if your gut is “grouchy” …well, lay off the coffee, the booze, the citrus, the acidic foods, the chocolate, the jalapenos, the spices. Until you can handle them.

    But, otherwise, ………..drink up, but watch the caffeine!!—it makes the heart race.

    IF COFFEE WERE AN ISSUE FOR CELIACS, IT WOULD BE FRONT PAGE NEWS!! The major celiac research centers would say “do not drink coffee!!”

    The so-called “lab tests’ and “data” FOR THIS “cross reactivity” issue? (to coffee and 17 other foods?) NOT validated or peer-reviewed. No evidence.

    This comes up repeatedly, but I can never find anything substantial to prove it.

      • I always tell you the truth as I know it, kiddo. ;)

        if I find anything to the contrary, you’ll be the first to know.

        (well, second, technically, because I will know it and then, I’ll tell you)

  21. Meant to add:

    this is from a neurobiologist who also researched this for us on c.com:

    “There is peer-reviewed literature on dairy cross-reactions, a poorly executed study on corn cross-reactions (their corn turned out to be CC’d with 80 ppm gluten), and some very old articles showing that people with celiac tend to have more food antibodies to dairy and soy. I haven’t found anything peer-reviewed on the coffee so I don’t know how they determined that it’s a cross-reaction with gluten vs. an occasional food sensitivity.

    There is no harm in eliminating coffee for a few weeks to see how you feel. Even if it’s not a gluten cross-reaction it can be an allergy/sensitivity. Just make sure you’re drinking something else caffeinated like tea or taper off to avoid caffeine withdrawal headaches.”

    Makes sense to me.

  22. One of the biggest lessons I had to learn after diagnosis was that gluten was not the cause of every stomach ache I got. Six months after diagnosis I started getting horrible stomach aches and other digestive issues. Was gluten the cause? Nope, it was apples (and I’ve yet to see any articles suggesting there’s gluten in apples). I sometimes get sharp stomach pains after drinking coffee and tea. Is it gluten? Nope, it only happens when I drink them on an empty stomach. If there’s food in there I have no problems.

    • You are very wise. ;) Nope, no gluten in apples! :)

      This happens to me too, Else. I agree. It’s not always about “the gluten”
      or even because we have celiac. People without celiac have digestive problems, too.

      Sometimes, it’s too much acid in the gut. Coffee is acidic and 2-3 cups (as some people indulge in)–is just too much.

      Coffee is beneficial. It contains antioxidants and it can reduce the risk of diabetes, heart disease, and cirrhosis of the liver.

      ….but like all things, moderation is the key.

        • apples have a high pectic level and are very acidic. Do you have problems with oher acidic foods such as OJ, lemon and limes? I was told by my GI doc to only eat sweet apples such as Gala and to pass on the Granny Smith’s or tart apples. Mostly due to acid reflux.

    • Else! I have the same reaction to apples! Except for an allergy to kiwis, I have no problem with any other fruits. Eating a raw apple causes horrible stomach cramps, but, oddly, they don’t seem to bother me if they are cooked. I have no explanation for this..

      • Hi.
        I receently found out apples, kiwi, banana, avacado, payaya,Mango, Peaches, tomato and all pited fruit food allergies are related to the rubber tree/latex. if you react to one, you may react to all. You can eat something 100 times and not react, then you do. I just had a life threateing allergic reaction last week mostly likely due to tomato, peace, mango salsa with a apple juice chaser:-)

        • Linda, I was also told by my allergist that if allergic to kiwi one is also highly prone to being allergic to others in the same plant family. My mother had a severe latex allergy so we always bought latex-free products. When asked before surgery if I had a problem with latex I responded that I don’t know. We never had any latex products in our house and when I left home I just continued the practice out of habit. When told about my kiwi allergy the nuse told me that I should always be sure that no latex was used with me in hospital settings. So far I’ve been okay with the other fruits (don’t know about latex), but I do keep an epipen with me just in case.

      • Eggs. for me, it’s the eggs. :(

        Baked IN things, no problem!

        A couple over easy or scrambled or boiled?

        An afternoon of nausea and stomach pain.

        No clue why.

      • I was just told last week that cooking what you are allergic to lowers your response. Therefore, it makes sense that you can handle the apples when they are cooked. But, it doesn’t mean your body isn’t starting an immune response and causing inflammation which leads to stomach problems as well. I was told if something bothers you raw, don’t eat it cooked because your body will still have an immunological response while it might be small and unnoticable it’s still not good for you.

    • If you have a problem with apples, you might want to look into fructose malabsorption.

      http://www.happyceliac.com/celiac-disease-associated-fructose-malabsorption/

      http://www.celiac.com/gluten-free/topic/79133-fructose-malabsorption/

      I don’t know if I have this, but before I ever thought about being gluten-free, I would get stomach aches from apples. Watermelon would cause problems, I never wanted to eat grapes, pears, raisins, any fruit juice other than 100% unsweetened grapefruit. All which are foods higher in fructose. Oh, and of course I could never drink regular soda (high fructose corn syrup).

      If you find any similarities to things described in those links, you might want to get a test, or just try to cut them out of your diet.

  23. IrishHeart kicks arse for researching this. Kudos for someone trying to bring the truth out.

    This whole issue keeps coming up because everyone seems to believe they put gluten in everything. Occasionally, something can bother our stomachs for no other reason other than that its a irritating substance, not because there’s gluten in it. Or other symptoms those commenters mention can be explained by a variety of natural phenomenon.

    You have no idea how many times I have to reiterate that correlation does not equal causation when the Paranoid Pennys start acting up.

    BTW, the doctor she links in the article is a Chiropractic Neurologist. Who the heck takes their dietary advice from their chiropractor? What a nut.

  24. Since the “healthy home economist” also claimed that celiacs could eat sourdough bread:

    http://www.thehealthyhomeeconomist.com/can-celiacs-eat-true-sourdough-bread/

    and had a bunch of celiacs tell her NO! (but she took those posts out and left the ones that were complimentary) and once claimed celiac could be “cured” buy “healing a leaky gut” (yes, I saw it!)

    (and she took that thread completely down after a barrage of posts by celiacs)

    well, I have NO use for what she has to say about what celiacs can or cannot eat or drink.

    As for the “doctor” she links to? well, he is a chiropractor “practicing medicine” just like Tom O’Byran ( a chiropractor) who runs Cyrex labs who “runs the 18 cross reactive food tests. ”

    Seeing a pattern here?

    $$$$$$$$$$$$$$ to be made off gullible celiacs.

    Here are his “credentials” as posted on his website:

    “Dr. David Clark found Chiropractic during his journey to change his own health and poor habits. Before obtaining his Doctor of Chiropractic degree he studied the use of herbs and nutrition as methods to improve health without drugs and surgery. After reading the chiropractic philosophy that the body has the ability to heal itself naturally through unrestricted communication with brain and nervous system, he knew instantly that becoming a chiropractor would allow him to help as many people as possible and fulfill his passion for education.

    Dr. Clark graduated summa cum laude Salutatorian from Parker College of Chiropractic where he received awards for achievement as “Outstanding Intern” and for “Outstanding in Basic Sciences.” It was there he began intensively studying Neurology so he could offer his patients a higher level of service.

    In 2005 Dr. Clark became one of less than 1,000 board-certified Chiropractic Neurologists in the world. Chiropractic Neurology is the newest, state of the art diagnostic and treatment technique. It brings together current research findings from fields such as psychology, neuropsychiatry, neurology, neurophysiology and nutrition—and uses this knowlege to bring hope to the sick, unhappy and hurting of all ages.

    Dr. Clark continues to train extensively in neurology in order to stay current with new research findings and offer his patients the most effective and individualized treatment recommendations.

    In April of 2008 he received a second Chiropractic Neurology Certification as a Vestibular Rehabilitation Specialist. With this training Dr. Clark offers a drug-free solution to those suffereing from vertigo, dizziness and balance problems.

    In 2009, Dr. Clark was awarded as a Fellow of the American College of Functional Neurology and Fellow of the American Board of Vestibular Rehabilitation.

    In March 2010, he was honored as a Diplomate of the College of Clinical Nutrition.

    And as if that weren’t enough…Dr. Clark has heavily trained in Functional Endocrinology, Functional Blood Chemistry Analysis and Functional Immunology”.

    Pul- leeze!!!!!!!!!! he “trains intensively” in all these subjects??
    …meaning he reads some articles, applies for some courses, passes a test and gets “credits” and a certificate. (well, whoohoo!!)

    Gee, I have certificates too–including ones in advanced life saving, safe campfire building (Girl Scouts), extraordinary and exceptional tap dancing (I was once featured in a major dance contest when I was 11) & DOS systems,from 1996 (but am a computer doofus) American Sign Language I and II, and…for when I was so graciously nominated several times by students to “Who’s Who Among American College Teachers”–which is so very sweet, but is a marketing ploy used to SELL BOOKS. I have one of the books right here..yup, there’s my name!!

  25. NOOOOO! Since I found out I couldn’t drink my FAVORITE alcoholic drink (whiskey) coffee is the one thing I have left! It’s the reason I get up in the morning! Sometimes the ONLY reason! It pisses me off when people try to make money on our fear and vulnerability in having such a “mystery” disease.

    • “It pisses me off when people try to make money on our fear and vulnerability in having such a “mystery” disease.”

      Amen to that. Damn vultures.

  26. Make it the first thing you add back to your diet and see how your newly clean tummy handles it.

    This is me pulling an ostrich move.

    I don’t wanna read any of the replies or research* because I don’t WANNA know if I can’t have coffee!!

    Don’t wanna. Lalalalalalalala. Can’t hear you.

    Let’s sing:
    http://www.youtube.com/watch?v=b7N0vujYieE

    *ok, i peeked a little… with one eye closed.

    • Anne,

      There is no reason not to drink whiskey —unless your gut cannot handle it. It is not a “gluten danger”, I promise. Just heal first, then try it again.

      GlutenFreekIM .

      Sweets, IH would never steer you wrong–in regards to what is safe for a celiac. I pinky swear. :)

      Drink up…but if’n you get heart palps…go to decaf. That’s the caffeine talking.

      Miss DEE,

      That’s my girl!! :)

      OKAY>>>>>>

      To all: if your gut burns, that’s the acid talking at ya. So, stop it and wait for awhile.

      HELLO !! EVERYONE!!

      Coffee is safe for celiacs— as far as the demon gluten goes (but watch the flavored thingies). I do not “do” those myself.

      IF COFFEE WERE DETRIMENTAL TO CELIACS, I’D BE DEAD BY NOW!!

      Coffee is not the beast some make it out to be.

      Neither are envelopes, tea bags, mascaras, vinegars, vitamin E and other assorted items that people suggest are gluten- laden and will kill us. Just MYTHS!!!!

      Celics need to use common sense.

      For the love of mike!!…if people would just READ LABELS they would STOP posting this alarmist Bullshyte on the internet.

      Sometimes, it is hard to be a celiac warrior…..
      myth-busting is tiring.

      I need a vacation, methinks…..:(

      • I was told by my dietician that there is no way of measuring the removal of gluten (or something like that) in whiskey or malt beverages. I know some sites say it’s okay, but the Celiac Sprue Association says it’s not (which scares me). Hopefully some specific whiskey research can come up with answers (because it’s probably a big priority for Celiac research) (:

        • I know what the celiac sprue association says, but they are the only ones that maintain this stance. They are non-profit support group, not a celiac research center.

          The science proving that the distillation process removes gluten is a few years old now. Both Dr. Fasano, Dr. Green, Shelley Case, GIG agree on the issue.

          I am quoting a respected member, moderator on celiac.com, my good friend and veteran celiac of 12 years: “Whiskey, etc. is made from grains which contain gluten, but it is generally accepted by experts that the distillate is gluten free. Having said that, there are a few people who have reported problems with distilled spirits or distilled vinegar. These are individual reactions— but not necessarily a gluten reaction. But most thinking is that the risk from distilled spirits is just an urban myth. I have no adverse effects from Bailey’s or from scotch whiskey. Just because something is not on a particular gluten-free list does not necessarily mean it contains gluten.”

          I say, drink up: coffee or plain wine and booze.

          FWIW, many celiacs I know drink both alcohol and coffee in moderation of course, and they have nice, healthy re-grown villi upon re-biopsy.

          But, as always, do whatever is best for you!

          Cheers!

          • I don’t know about the moderation part, :-) IH, I live in paradise, and that does not come up over here very often, AND, for what it is worth for everyone else here on GD, I have no problems with vodka NOT from potatoes. I do not like whiskey therefore, all celiacs should not drink whiskey. but my husband loves whiskey so it should be ok, oops he’s not a celiac…. just kidding.

            GD, I’m counting down the days where I am double fisted with coffee in one hand, and the libation of the day in the other, and even though you will be in bed when I toast you, (b/c of the time change), I will be toasting your 30 day, without.

            All seriousness aside , are you better?

            Jules aka, Aloha Julie

            P.S. this is the 2nd time in a week where I’ve answered the security question wrong, so maybe I should drink whiskey! And I could have counted on my fingers and toes to get it correct. sheesh…. rum is good. right? (a rhetorical question)

            Love all of you!

            Jules

            • Jules,

              I love your pretend faulty logic statements so much. You crack me up. girl. :)

              I am sure moderation is very difficult as I am sure life itself is majorly stressful, living on a tropical island. Sun, ocean, warm breezes, fresh fruit and veggies and seafood on a consistent basis…ah. Sounds like a hell hole.

              What a horrible place to live. You poor thing. :)

              Aloha, babes.
              Love, IH

              ooooh, I got an easy one this time 4 +3 …hehehe

            • of course, malt is a huge no-no…did not mean to gloss over that part.

              “Tricia Thompson, MS, RD is a nutrition consultant, author and speaker specializing in celiac disease and the gluten-free diet. She is the author of The Gluten-Free Nutrition Guide and has a MS degree in nutrition from Tufts University in Boston, Massachusetts”

              She covers almost all the questionable products and ingredients and busts some myths too. Take a look!

              http://www.diet.com/dietblogs/read_blog.php?title=Confusion+Over+Malt+Extract+%26+Gluten-Free+Foods&blid=16712

              http://glutenfreedietitian.com/gluten_free_books.php

              best wishes to you!

              • Okay sorry I hate to drag this out so far. But I recently tried Jack Daniel’s again and got gluten symptoms so I thought I would check out Tricia’s website and she had this link:
                http://www.ttb.gov/rulings/2012-2.pdf
                I just want to make sure the info is out there in case other people might be as confused as I was.

                So now I guess I better listen to my dietician. ):

                • I am familiar with the information in the article, but honestly, I think you may be missing the main point.

                  This statement regarding the “level of gluten in a product”
                  applies to ALL GF items deemed “safe for celiacs” (not just alcohol).

                  < 20ppm is the "acceptable" threshold —according to the celiac research center experts.

                  Would we like it to be 0?–sure, but that is not going to happen.

                  I am very sensitive to trace gluten and never eat anything from a source that uses shared equipment or "processed in a facility" with wheat.

                  This "safe level" is true for foods with a giant black certified GF label (determined by GIG) and distilled grains or anything else we all consume on a daily basis. They have to be under 20ppm to get that label.

                  Do you eat foods with a GF label? If so, it's the same thing.

                  But it's voluntary. It's not mandatory—yet. This is the law we are all waiting on.

                  It's the level that has been determined as acceptable for celiacs to consume and not do any damage to the villi.

                  This is the relevant part of the studies.

                  Celiacs who consume alcohol, coffee, etc.— HEAL just fine.

                  If you, personally, are reacting to alcohol, then yes, you should not drink it. It could very well be that you simply cannot tolerate it just now–because your gut is still raw. But it is not because the distilled grain is causing damage to your villi.

                  The gluten is distilled out.

                  If this were the case, NO celiacs would ever heal their guts and get well. If this were the case, my friends with 6, 7, and 12 years in (who drink alcohol almost daily) would not have healed their totally flattened villi, and, honestly, I'd surely be dead by now.

                  But it is incorrect to suggest that distilled grains contain a level of gluten that will harm a celiac.

                  Distillation is an extremely effective process in which all prolamines (the type of proteins that trigger celiac symptoms) are removed. This means that unless gluten-containing flavorings have been added, all pure vodkas, tequilas, rums, brandies, whiskeys and gins are gluten-free.

                  Liqueurs are distilled liquors that have flavorings added, and you will want to check that the flavorings are gluten-free.

                  My hubs, a senior chemist for 30 years has explained it all to me but please, read this article, written by a PhD chemist. Maybe it will put your mind at ease.

                  http://www.celiac.com/articles/21886/1/Distilled-Spirits-Grain-Alcohols-and-Vinegar-Are-they-Gluten-Free/Page1.html

                  Yes, you will see that some ultra sensitive celiacs stated in the commentary section that they "react to alcohol".The bottom line is, if anything makes you feel unwell, do not consume it.

                  ( Or people can try wine or potato-based vodka).

                  As always, it is my wish to help keep celiacs informed –not to argue or be "right" or "make them do something"—so, if after considering all this, you still feel it is detrimental to your health, then please, do not drink it. Your body, your rules. That's what I do for myself too. :)

                  Best wishes to you!

                  • thanks so much for your well-informed response- I was just diagnosed this year and I worry so much about these things so much to the point that I have nightmares that I accidentally ate toast! It’s so hard when you hear different things from different people, even professionals, because no one is sure of anything. you sound as though you have really researched these things and it’s good that there are some people who are well-versed in celiac (: I will keep whiskey for very special occasions!

                    • I agree, hon–it IS very difficult to decide what is “correct” when you hear so many different “theories” –but for what it is worth, here is how I decide what is “true”:

                      (1) what do the leading Celiac Research Centers and doctors who run them say?

                      In particular, Dr. Alessio Fasano, Dr. Peter Green, Dr. Joseph Murray, Dr. Stephano Guandalini

                      (2) what does GIG say? (the gluten intolerance group)

                      (3) what do registered dieticians who are celiac-savvy and make their living working with celiacs recommend? Check : Shelly Case and Tricia Thompson.

                      (4) what do trusted, veteran celiacs say? (the ones who are healed, happy, healthy.) Those who share their wisdom with others….Jules Shepherd, Melissa Jory, Peter Bronski, Mary Capone, among so many others!! … just like the Gluten Dude.

                      (5) and some on celiac.com can help too :)

  27. I love it!!!! I have been drinking coffee since I was 10 years old…I have given up a lot in this life because of Celiac disease and coffee is not one of them.

    Been sypmtom free off and on for 4 years.

  28. I can see all points of view here, but would like to share my experiences with you all.

    I am both a former state registered UK dietitian and a coeliac. I used to be a total coffee addict prior to diagnosis, early in 2010. Then I gave it up as it made me so sick. I now follow a very strict gluten free diet (in fact almost paleo to remove all the various types of ‘glutens’). As a result of this I am generally extremely fit and well and have zero health problems. About 5 months ago I started drinking coffee again and initially I had no problems – then suddenly WHAM my body gave me all the glutening symptoms in one fell swoop and my hair started to fall out in fairly alarming little clumps! I was nauseous and sickly all the time. I kept drinking the coffee thinking it could not possibly contain gluten! How wrong I was. I checked everything that touched my body. No gluten anywhere. Only when I stopped drinking the coffee did they symptoms go away!! I would not have believed it but now I definitely do. MY BODY THINKS COFFEE IS GLUTEN! However, bizarre this might sound it it certainly true for me. I was in denial for quite a while. I just love coffee. So I have to agree with the guy who says that in some coeliacs coffee is a bad idea! Once I quit the coffee my hair started growing back too! I now feel so much better.

    So if you are not 100% well I would suggest you try avoiding the coffee – however evil and unpleasant it sounds! (OH How I wish I could go back to drinking it again!)

  29. I have struggled with regular coffee making me run to the bathroom, but my personal testing has shown that it was just the caffeine increasing peristalsis. Yet, espresso doesn’t do it to me. Isn’t that odd? Neither does decaf.

  30. Well, I have figured out I can drink dunkin doughnuts decaf, I cannot tolerate caffeinated coffee, I’ll be in the bathroom all day. That is odd that expresso does not bother you, but hey, everyone is different.

    Amanda, how about these winds!? Our power was out for 2 hours yesterday.

  31. Wow! You must be on Oahu then, yeah? Those winds were pretty gnarly, and the rain was just pounding all night. I have to admit though, I love it. During the summer I long for a good rainstorm. The dryness gets to me.

  32. All I can say is, it seems to be fine for the most part, but I CANNOT have it when I’m already sick from something else. My body treats it very similarly to gluten if I haven’t fully recovered from something else I ate.

  33. I am in the camp that says if it hurts your stomach or makes you sick you probably need to give it up- most of us celiacs have many food issues more than just gluten and we have to go that extra mile to get well.. Me included. I have said good bye to all theses because my body reacts BADLY to them.. grains, all things dairy, soy, all beans, sunflowers/safflowers, corn syrup, stevia, peanuts, nightshades except tomatoes and some raw veggies- not fun at all. Going gluten free was hard.. giving up grains and legumes really sucked- I love black beans and rice!- giving up dairy made me cry -seriously I sobbed- inwardly anyway I miss cheese!.. and my beloved potatoes that have been my life long companion turned on me too- hussy!
    .but I am healing and feel much much better so it is worth it..
    However,.In saying that . I don’t have a bad reaction to coffee. As long as my body can tolerate it-I WILL NOT GIVE UP COFFEE!!! To quote one of my favorite tv characters-I can’t stop drinking the coffee. I stop drinking the coffee. I stop the standing and the walking and the words putting into sentence doing-Lorelei Gilmore
    I can’t imagine a happy life minus my morning liquid comfort- I love the way it smells, tastes and makes me feel- it makes me happy ,makes me calm, makes me nicer- and a better Christian.- keeps me from growling and snarling.hee hee.. But hey I have 8 kiddos 7 still at home. I,don’t get enough sleep, I have stress in my life.. I need coffee to keep me sane and give me enough energy to face the day and to clear away the brag fog ..

  34. I’m one of those that DOES have a reaction to coffee. I get the same tummyaches, bloatedness and lethargy as having gluten. The only way you’re gonna know is to cut it out and see how you feel. It’s bad enough having to cut out gluten, but coffee as well?! I’ll be in a dark space rocking back and forth hugging my knees to my chest as I try to figure out a substitute for Monday mornings!

  35. I loved my coffee in the morning. I bought fair trade, organic beans and ground them, and used filtered water. It WAS the whole experience for me. But I did feel that it was time to give it up. I did it s-l-o-w-l-y, so that I would not have withdrawal headaches. And I substituted high end, organic, loose black tea. It was absolutely worth the effort for me.

    I am gluten sensitive; I do not have celiac. But even though my migraines were cut in half by eliminating gluten, I still had a fair amount of abdominal discomfort, and migraines. Clearly I have multiple sensitivities. Did the gluten sensitivity cause me to be more sensitive to other things? Perhaps.

    Quality of life was what was most important. My nutritionist told me that coffee is difficult for the liver to process. Why was I resistant then? I had to make a conscious decision that I wanted healing foods for my body. I don’t approach food any more with a list of can’t-have’s. I am just thankful for the foods I can eat. My tummy, my brain and my psyche are all the healthier for it.

  36. Dude, love your blog. I saw some Youtube video come up in my recommended list and it was some doctor who was trying to say that rice had gluten and 10% of coffee has cross-reactive proteins that do the same thing as gluten. Idiots. So I googled around and found this, thanks for having great SEO! Suicide watch – I laughed out loud! I had to give up coffee when I was diagnose as celiac and when I was able to try it again, I felt my whole body light up. I call it fuel for my Chi. Happy.

    Anyhow, I got glutened a few weeks ago, and was having continuing problems, so I was drawn in by the coffee theory video, but I just don’t buy it.

    As a former scientist who had to develop immunoassays to detect proteins, I can assure everyone that just because something in the petri dish cross-reacts with the antibodies in your mix doesn’t mean it is the same biological process as your immune system reacting to gluten.

    These antibodies are produced by taking pure gluten (or, it might be pure, or might have a tiny, tiny bit of something that’s in coffee too) and injecting it into sheep, goats, chickens – whatever. You then draw blood as their immune system reacts to it, and purify those antibodies with a column of beads with fixed gluten (again, maybe not 100% pure). You wash away the junk, then release the antibody from the gluten and get a mostly pure batch of antibodies that react to gluten. But it’s never a 100% this antibody only reacts to gluten antibody, and gluten is hardly ever the only protein one of those antibodies will ever react to. It’s a good enough reaction to test most of the time… but not all of the time. It could very well be that there is a non-specific interact in with something in coffee.

    See, some proteins just stick together in a non-specific way. Some proteins that stick can be washed away, others just have similar shapes as the gluten and might react in the test tube with the antibody, but if your immune system saw that protein in the real world, it wouldn’t act the same way necessarily that it would with gluten. Sure, that key might go into the antibody’s lock, but the combination wouldn’t be right to open it up into the crazy-go-nuts reaction us celiacs get.

    That said, coffee has a stimulating effect on the digestive system. If you are prone to diarrhea, or have been glutened or recently diagnosed, and are sensitive, it might be a good idea to back off the coffee for a while until the small intestine heals. But I have yet to find any scientific studies that link coffee to villous atrophy. Alcohol, on the other hand, can lead to v.a. in serious alcoholics who aren’t celiac, as can some drugs and radiation.

    You can take the celiacs off suicide watch…

  37. I have the Hashimoto’s spectrum of symptoms, which has a number of symptoms in common with Celiac and is also autoimmune, usually with endocrine issues. Before I gave up all grass grains, I could not drink coffee or tea without getting disabled by mood swings. Now I can drink coffee without that symptom as long as I have no grass grain exposure…but tea is still a no-no, probably due to immune stimulating antioxidants?? Given my experience, I tend to trust my own testing and observation much more than I would a lab test or most research. But given how little we really know about celiac and about the immune system, and how many different symptoms I have occurring independently with different triggers, I wouldn’t be surprised if damage was occurring without overt symptoms. And we know that’s the case with many celiac patients, so why not other parts of the body? Especially with leaky gut and brain immune barriers allowing things in to overwhelm the immune system….okay, I’ll stop there!!! ;-)

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