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I have been drinking the most delicious and healthy coffee substitute, Dandy Blend. It is a blend of roasted dandelion root (which detoxes) and beets. It is also a blend of rye and barley extracts...I know, I know. Apparently gluten is removed and only the extracts are used and the product is repeatedly tested. I get no reaction to Dandy Blend that would suggest gluten, but I worry that the mild side-effects I get from it could be ataxia. It contains less than 5 ppm of gluten. I'm not sure what that means... I love this stuff, so I hope I can keep drinking it.

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Repeated research shows that the traditional tests for gluten do not appropriately detect barley gluten and show far less than is actually present once a test that will detect it is done. This means that the tests that have been done showing less than 5 ppm are completely worthless. For what it is worth, I wouldn't touch that crap with a 10 foot pole. I also get different reactions to wheat and barley contamination with different recovery periods. (Never been rye contaminated to the best of my knowledge.)

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I looked at it.....I wouldn't use it. Maybe its safe but I think its easy to avoid this product. If I have to chance something, it would be a medication I REALLY needed for a short time....not a beverage.

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No, the chocolate peanut butter is a very different issue. I'm pretty sure I'm allergic to chocolate. I never react to Dandy Blend, but it might be time to toss it. Sad. The woman who posted about it and where I found it has a wonderful web site and is a gluten-free vegan. She is a Celiac, so maybe I'll mention this to her.

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If barley gluten is not accurately tested by ELISA tests then this is quite a problem because barley extracts and enzymes are used in many gluten free products like Soy Dream and Rice Dream.

  This was in interesting article:

 

http://www.glutenfreedietitian.com/newsletter/barley-enzymes-in-gluten-free-products/

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Yes, it is a problem that has been frequently discussed here. Many react to these products, and either call the company and come here flamin' pissed or simply come here confused about why they are getting sick from these products when other rice/soy doesn't bother them.

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I may have found another option in coffee substitutes. I'm contacting the company now. It's called Ersatz and is not made with barley or any extracts of it at all. It is apparently not processed with anything like gluten or barley or soy. They list it as gluten-free. Very excited to check it out. Thought someone else might be interested...

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I may have found another option in coffee substitutes. I'm contacting the company now. It's called Ersatz and is not made with barley or any extracts of it at all. It is apparently not processed with anything like gluten or barley or soy. They list it as gluten-free. Very excited to check it out. Thought someone else might be interested...

Just curious. Since these really don't resemble coffee, why not just drink tea? Lots of varieties and flavors to choose from.

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Just curious. Since these really don't resemble coffee, why not just drink tea? Lots of varieties and flavors to choose from.

 

 

I thought earlier today when I read this but could not respond until now....just drink water????! :)

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I thought earlier today when I read this but could not respond until now....just drink water????! :)

People like a hot beverage sometimes. Plain old hot water doesn't quite do it.

But I thought maybe some easy to find, easy on the wallet tea?

coffeebath.gif

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Just curious. Since these really don't resemble coffee, why not just drink tea? Lots of varieties and flavors to choose from.

Um...because I want coffee. Tea gets old. I'm Polish. We drink more tea than the English--much, much more. No more tea. I'm tea-ed out. Sick of it. Green tea, white tea, black tea, darjeeling, Thai tea, jasmine, rooibos... had them all. And the coffee substitutes absolutely do resemble coffee. Have you tried them? Taste much better actually. Don't intend on letting Celiac disease rob me of having a rich life.

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Um...because I want coffee. Tea gets old. I'm Polish. We drink more tea than the English--much, much more. No more tea. I'm tea-ed out. Sick of it. Green tea, white tea, black tea, darjeeling, Thai tea, jasmine, rooibos... had them all. And the coffee substitutes absolutely do resemble coffee. Have you tried them? Taste much better actually. Don't intend on letting Celiac disease rob me of having a rich life.

Why not just drink coffee? It's gluten-free!

Edited to say - why not decaf coffee?

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   Ha, good question. I have Mitral Valve Prolapse and get heart palpitations. I've had numerous trips to the ER over this, and usually not at my request. A doctor sent me to the ER after he gave me Lidocaine by injection at age 21 when I was in college. All started then. It's not comforting when your doctor starts to panic. I remember sitting there with all the heart attack victims thinking, this is way too young to be in this section of the hospital. Eventually I was told not to consume caffeine. I can't even drink decaf because that is still too much caffeine for me. I drink decaf green tea and decaf black tea. It's bad.

   Oh and incidentally...this article explains that the gluten intolerant and Celiacs should not drink coffee...

:-(

http://www.thehealthyhomeeconomist.com/gluten-issues-or-celiac-dont-drink-coffee/

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Ha, good question. I have Mitral Valve Prolapse and get heart palpitations. I've had numerous trips to the ER over this, and usually not at my request. A doctor sent me to the ER after he gave me Lidocaine by injection at age 21 when I was in college. All started then. It's not comforting when your doctor starts to panic. I remember sitting there with all the heart attack victims thinking, this is way too young to be in this section of the hospital. Eventually I was told not to consume caffeine. I can't even drink decaf because that is still too much caffeine for me. I drink decaf green tea and decaf black tea. It's bad.

   Oh and incidentally...this article explains that the gluten intolerant and Celiacs should not drink coffee...

:-(

http://www.thehealthyhomeeconomist.com/gluten-issues-or-celiac-dont-drink-coffee/

The " article" you reference is not from any doctor or medical center. Yet, somehow this person has managed to become an "Internet legend" with her " Internet myth". There is no scientific evidence for this coffee cross- reactive nonsense.

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Apparently there is a doctor saying the same thing:

 

http://drclark.typepad.com/dr_david_clark/2011/09/coffee-and-gluten-sensitivity-surprising-news.html

 

Don't know. Don't care. I don't drink coffee anyway. Didn't realize I'd have to do citations like in a dissertation. Do you need an M.D. to chat on here? Didn't realize. Perhaps you have an M.D.? No? Is there absolute proof that Dandy Blend has gluten in it? Probably not.  I thought the forum was for Celiacs looking for help and support. I can do MLA, APA or Chicago Style citations if you want. I mean I am an English Professor. Not good enough I guess.

 

Not finding a lot of friendly support on Celiac.com. I think deleting my profile and refraining from the forums would be best. Won't recommend the site to Celiac friends...Peace out.

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Apparently there is a doctor saying the same thing:

 

http://drclark.typepad.com/dr_david_clark/2011/09/coffee-and-gluten-sensitivity-surprising-news.html

 

Don't know. Don't care. I don't drink coffee anyway. Didn't realize I'd have to do citations like in a dissertation. Do you need an M.D. to chat on here? Didn't realize. Perhaps you have an M.D.? No? Is there absolute proof that Dandy Blend has gluten in it? Probably not.  I thought the forum was for Celiacs looking for help and support. I can do MLA, APA or Chicago Style citations if you want. I mean I am an English Professor. Not good enough I guess.

 

Not finding a lot of friendly support on Celiac.com. I think deleting my profile and refraining from the forums would be best. Won't recommend the site to Celiac friends...Peace out.

 

This doctor info includes him trying to sell stuff. When someone is trying to sell me stuff rather than educate me their opinion is always suspect.

 

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

 

This is actual valid information from a leading source. The reason that it is being disputed is because those of us who are aware that not only the University of Chicago but other leading celiac researchers in the US and around the world all say over and over that the coffee thing is complete bulls$#& and we're trying to stop people from spreading more lies. If you can't handle suggestions and being told when the information you have is bad and is causing you to unnecessarily avoid things or even possibly cause you harm then you're right, maybe a forum isn't the right place for you. At any rate, no one was mean and you seem to just be taking it all quite personally that you got bad info. People offered alternatives and alternate solutions, that's what we do here, that is what community is about.

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Apparently there is a doctor saying the same thing:

 

http://drclark.typepad.com/dr_david_clark/2011/09/coffee-and-gluten-sensitivity-surprising-news.html

 

Don't know. Don't care. I don't drink coffee anyway. Didn't realize I'd have to do citations like in a dissertation. Do you need an M.D. to chat on here? Didn't realize. Perhaps you have an M.D.? No? Is there absolute proof that Dandy Blend has gluten in it? Probably not.  I thought the forum was for Celiacs looking for help and support. I can do MLA, APA or Chicago Style citations if you want. I mean I am an English Professor. Not good enough I guess.

 

Not finding a lot of friendly support on Celiac.com. I think deleting my profile and refraining from the forums would be best. Won't recommend the site to Celiac friends...Peace out.

 

"Dr. Clark" is a chiropractor posing a theory, hon...not a celiac expert. So, no, sorry---- I do not give him much credence.

 

I'm a retired English Professor myself :) 

 

We like to provide links to reputable sites on c.com so newbies can find reliable and solid information.

 

Sorry you are not finding the friendly support here that so many people do. Just because someone disagrees with you, it does not mean

they are not being friendly. They are trying to help.

 

The people who responded to you--are all very helpful and supportive experienced celiacs.

 

Hope you'll change your mind and stick around. If not, best wishes to you. 

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You know, Ciel......whether you read this or not, people who don't like the honest and correct answers they get on this forum when seeking answers, and then go into a snit about it and accusing us of not being supportive are not helping themselves at all.  Coffee is absolutely safe for Celiacs to drink, unless you have a caffeine problem like yourself.  There is no such thing as cross reactive....it's nonsense. Right up there with the notion that all gluten free processed foods are contaminated with gluten. There are many self professed experts on the internet who know nothing. If coffee was not safe, any reputable Celiac organization out there would be telling us this and they are not.  Nutritionists do not tell us to avoid coffee and those of us who enjoy a good cup of joe heal well.  It's just plain common sense.  I am sorry coffee is off limits for you but coffee is safe as far as Celiac Disease is concerned.

 

We also told you that your Dandy Blend was not safe because of the barley content.  There is a new beer out there which uses barley but that is off limits to us.

They distill it down so there is minimal barley content.  Many choose to drink it but I would not.  It has barley in it and that's one of the big three that's off limits for Celiacs.  You can do whatever you want in life and consume whatever you feel is safe but you might end up feeling bad down the road and you won't know why.

Don't become angry with those of us who try to give you good information when you don't seem ready to hear it.

 

I wish you luck and good health!

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Apparently there is a doctor saying the same thing:

 

http://drclark.typepad.com/dr_david_clark/2011/09/coffee-and-gluten-sensitivity-surprising-news.html

 

Don't know. Don't care. I don't drink coffee anyway. Didn't realize I'd have to do citations like in a dissertation. Do you need an M.D. to chat on here? Didn't realize. Perhaps you have an M.D.? No? Is there absolute proof that Dandy Blend has gluten in it? Probably not.  I thought the forum was for Celiacs looking for help and support. I can do MLA, APA or Chicago Style citations if you want. I mean I am an English Professor. Not good enough I guess.

 

Not finding a lot of friendly support on Celiac.com. I think deleting my profile and refraining from the forums would be best. Won't recommend the site to Celiac friends...Peace out.

 

Please don't do that.  If all the polite supportive people leave as a reaction to those less polite and supportive, that will make the forum a less supportive place to all those other about to be diagnosed celiacs out there.  Please stay and try to help the tone of the forum.

 

I have looked at the cross reactivity studies and I think that you might want to have a look at them yourself before assuming that it is true.  I don't believe that cross reactivity of gluten and coffee has been well shown.  I believe that they right still, but for the wrong reasons.  I think that the problem comes from food fraud: 

http://www.usp.org/food-ingredients/food-fraud-database

They found barley, rye, soybeans, grain, malt and corn in coffee.

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Stephanie....not one person on this thread was unsupportive or rude to ciel.  She did not like the answers she got and left in a huff.  That was her choice.  I hope she calms down and realizes that the information we gave her was good information and comes back here to join in again but that is up to her.

 

As far as cross reactivity for whatever reasons, your stance is that the whole food chain is contaminated and Celiac's do not really heal because they don't eat like you do. That is right up there with cross reactivity between coffee and gluten because your body recognizes coffee as gluten. If people choose to believe this nonsense, and that everything is contaminated and not safe, they can do whatever they want but they will only be making their gluten free life harder without cause. There has been a lot of bombardment on this forum of junk science and Celiac urban myths and if some choose to be angry when we call it like it is, then so be it.  I'm sure that some of the food supply isn't 100%, that goes without saying, but coffee is safe and the vast majority of it is not contaminated.  No one would heal if it was and Celiac organizations, the ones that matter, would be warning people about it.  They aren't.

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Gemini,

You are putting strange words in my mouth.  That is not my stance.  The vast majority of celiacs have no need to eat the way I do.  The whole food chain is not contaminated even when you do eat like I do.  I buy some things in regular stores and markets like everyone else does. 

 

My stance is that some celiacs do not heal because they need a more careful diet as shown by this study: http://www.biomedcentral.com/1471-230X/13/40/abstract

 

Things shown by peer reviewed studies published by celiac experts in reputable journals are not junk science or urban myths.

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I don't think so, Stephanie.  You have repeatedly had the stance that most foods have trace amounts of gluten in them, without having any proof that this is so.  There are many reasons why people heal more slowly than others but you insist that it is probably because of all this trace gluten......that no one has absolutely shown proof of.  The vast majority of people who take this diet seriously eat a very careful diet and that's why we heal well. Most start with an unprocessed diet and graduate to more foods as they heal, so I am not sure how more careful you can be than that, without slipping into paranoia about the food chain. If there is so much cc and food fraud, how is it that most Celiac's heal just fine? Most do but it may take a little longer for some, for many reasons which are discussed on this forum. You only back track when people question your posts and try to dig deeper. 

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I can't do coffee, gives me GERD intstantly, a wicked headrush and migraine.

 

It took cleaning up my diet, and doing a serious elimination to work that out.

 

I can't do coffee, but it aint cause of gluten. Nor are the corn, soy, sesame, alchohol and myriad other things I can't eat. The dairy, now there is some evidence of links, but I don't think even that comes under cross reactivity.

 

It took me ages (like, years) to get my head round this stuff. I came here in September 2012, couldn't believe the extremes in diet that people went to to get better. By January, I understood it, cleaned up, and am now 10 times better than I have been for over 20 years. It is really hard to know how to say that without sounding like a know it all expert. Our dilemma is whether to tell newbies how we got better or just say go out and by all the processed gluten-free c*** you can and cross your fingers.

 

I have my life back, and there is not a minute of any day that I don't thank those who helped me when I arrived.

 

I hope you find a beverage which suits you :) I like redbush tea best now, and can do decaff coffee a few times a week.

 

Good luck with recovery

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AVOID this! Dandy blend has made me sick! I have been drinking it for about a month and have noticed constant abdominal pain.  This is the only change I have made to my diet.  It is such a shame that the company markets the product to people who need to be gluten free yet it is hurting people who drink it.  The process they use obviously doesn't remove all the gluten.

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