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Please Don't Let It Be Coffee

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Posted 11 September 2013 - 09:21 PM

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

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Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 


Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Posted 12 September 2013 - 06:13 AM

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

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Recovering Gluten Eater 

DX'd June 17th 2013



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Posted 13 September 2013 - 08:12 PM

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

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

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

It gets better. I promise.


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

We all take different rates to heal. 

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

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

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Posted 13 September 2013 - 08:14 PM

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


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

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

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Posted 01 October 2013 - 08:44 AM

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

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




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

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


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







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



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



"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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Posted 01 October 2013 - 09:26 AM

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


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

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Posted 01 October 2013 - 10:40 AM

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

Just a thought for another explanation.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

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