Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Feeling Cross About "cross Sensitivity"


  • Please log in to reply

10 replies to this topic

#1 Raywuwei

 
Raywuwei

    Community Member

  • Advanced Members
  • PipPipPip
  • 37 posts
 

Posted 01 February 2013 - 05:35 PM

I've already written here about oats a few times because I am desperate to reintroduce them into my diet, but I am being strong and sticking with the one year elimination plan. But now that I've swallowed that pill, I just learned at a GIG meeting that people can be as cross reactive to coffee, dairy and yeast as they are to oats! They all have proteins that are super similar to gluten. People, I live in Portland Oregon. And they're trying to tell me I can't have my coffee??

I just can't seam to get a handle on this diet. Just when I think I am being strict enough (following doctor and naturopaths orders, btw!) I hear from some strict celiacs that there is more I need to cut out. Or that I'll never be able to eat something again. And so I can't even tell if I am feeling healthy or not, and I am just so confused about what to put into my body. Aren't we all a little different? Oh, I dont know, UGH!

So about this cross sensitivity stuff. At the GIG meeting they were saying that if you reacted to coffee, oats, dairy or yeast, then you'd have to eliminate it for life. That there is no training your body to understand their proteins are different from gluten. I think I feel fine when I have coffee, but I mean it's a laxative so how do I know if my resulting bathroom things are a bad reaction or regular coffee stuff? I know I'm fine with dairy, I feel great when I have kefir and icelandic yogurt. I dunno about yeast.

And apparently there is a test you can order on this stuff, Cyrex #4 Cross reactivity test. Anyone heard of that? I don't have health insurance, so I can'r order one up. But would you trust those results anyway? I hear that the whole IgA, IgG distinction of sensitivity and intolerance is still greatly debated because again, no one in the health community can agree about what we celiacs should be eating. Grrrr.
  • 0
4/25/12 tTG blood work tested at >200
5/11/12 Endoscopy confirmed scalloped Duodenum
Gluten Free since 5/11/12

Celiac.com Sponsor:

#2 kareng

 
kareng

    Be Royal

  • Moderators
  • PipPipPipPipPipPip
  • 14,121 posts
 

Posted 01 February 2013 - 05:57 PM

Your insurance wouldn't pay for that sort of unproven testing.

This " cross- reactivity", the proteins are almost like gluten, theory has no real scientific merit that I have seen. People have posted all kinds of things on here to prove it - a woman with no medical or chemical training and a blog, something that looked like a kids high school sciene paper, info from websites trying to sell tests, books, miracle cures, etc.

Most of us who want to, drink coffee. A few people with Celiac have a problem with coffee. A few people without Celiac have a problem with coffee. My SIL can't have dairy but she doesn't have Celiac ( they have looked a few times). I can have dairy and I have Celiac ( they only had to take a quick glance).

An interesting thought - brewed coffee has almost no protein - like 0.2-0.3 grams per cup. Perhaps they are eating coffee beans?
  • 0

LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
Celiac.com - Celiac Disease Board Moderator
 

 


#3 Lisa

 
Lisa

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,799 posts
 

Posted 01 February 2013 - 05:57 PM

Cross reaction is a relativly new terminology and definition. And I'm not too sure that there are substantiated studies for cross reaction, but there may be. Although, it's very typical that many people here have multiple intolerances that they have self discovered over a number of years. I'm not one of them. What is the common demonator, I don't know.

I would recomend that you stay exclusively on the gluten free diet, keep a food diary for several months. And after some time, you still have issues, then explore other possible intolerances.

An allergy test could be an aid, but I have no experience with that. AND follow your gut.... enjoy your coffee! :)
  • 0
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#4 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,550 posts
 

Posted 01 February 2013 - 05:57 PM

No peer-reviewed scientific evidence/articles whatsoever of this "cross reactivity" theory
or the "tests" that prove it. I have looked for them in Pub Med.

No celiac specialists support this "theory" at this time --nor do they find
any of those Cyrex lab tests valid.

I find it astounding that someone at a GIG meeting is telling you this.

Unless you have digestive issues with coffee or dairy or yeast, etc. or an allergy to them,
there is no reason for a celiac to avoid those "alleged" cross-reactive foods.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 kareng

 
kareng

    Be Royal

  • Moderators
  • PipPipPipPipPipPip
  • 14,121 posts
 

Posted 01 February 2013 - 06:04 PM

I will say I have seen people use the term " cross reactive" in different ways. Some just mean they are intolerant to something and it feels like when they are glutened. It does not mean that the offending food had a gluten- like protein. For example, bananas make me burp and bloat much like gluten does. Some would say I " cross react" to bananas because they cause me the same discomfort/ issues as gluten.

The definition I think you are asking about has been bouncing around the Internet, first spread by a non- medical, non- chemist's blog. This theory is that your body looks at all that protein in coffee ( less than a third of a gram) and thinks its gluten. I'm not a chemist, but I don't see how the proteins in such diverse foods could all resemble each other.

  • 0

LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
Celiac.com - Celiac Disease Board Moderator
 

 


#6 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 01 February 2013 - 06:07 PM

It is a brave soul indeed who would get up and say "All celiacs should avoid x, y, z " (apart from gluten of course),or "No gluten intolerant should eat a, b, c "(apart from gluten) because there is so much we don't know, such a paucity of scientific evidence and so much pseudo-science spread around on the internet and in books. Everywhere we turn someone is promoting this or pooh-poohing that with very little support for any statement. The best way to determine what your body tolerates is to test it out, one food at a time. It is still the most infallible test. If it doesn't like it this year, test it next year. If it doesn't like it then, it is up to you whether you want to try it again or not.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 Raywuwei

 
Raywuwei

    Community Member

  • Advanced Members
  • PipPipPip
  • 37 posts
 

Posted 01 February 2013 - 06:33 PM

Perhaps they are eating coffee beans?

Haha! Who knows.

AND follow your gut.... enjoy your coffee! :)

Thank you, I WILL!

No peer-reviewed scientific evidence/articles whatsoever of this "cross reactivity" theory or the "tests" that prove it. I have looked for them in Pub Med. No celiac specialists support this "theory" at this time --nor do they find any of those Cyrex lab tests valid.

Oh, thank goodness. I'm glad you've looked into it!

The best way to determine what your body tolerates is to test it out, one food at a time. It is still the most infallible test.

Good, that is what I had thought before this craziness!

Thank you all, I feel very much relieved :)
  • 0
4/25/12 tTG blood work tested at >200
5/11/12 Endoscopy confirmed scalloped Duodenum
Gluten Free since 5/11/12

#8 Celiac Mindwarp

 
Celiac Mindwarp

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,167 posts
 

Posted 01 February 2013 - 10:23 PM

I agree with the posts above. It seems to me reading around that lots of celiacs and those with NCGI have ranges of intolerances, maybe cross reactivity, but that the only thing we all share beyond needing to avoid gluten is that we all have to find our own way through and find out what we react to, and in which quantities and combinations.

If you have already done a year of elimination diet you are more than up to keeping going and working out what works for you.

It might be worth trying a coffee elimination, who knows if it will make a difference. I am one who did have to give it up, but you can be sure I wouldn't if I didn't have to.

The other thing I have seen here is that sometimes people gain foods back after eliminating for months or years. I have been able to handle 2 to 3 cups of regular tea i a week in the past year, after 9 years without.

One of the things I love about this board is that people tend to make suggestions, rather than give instructions. Looking at all the range of experience has saved me years of trial and error in elimination. I am not there yet, but on the way. Mourning a few loses , celebrating some gains and new foods and combinations.

Sounds to me like you are doing a great job, keep it up :)
  • 0
- 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

#9 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 02 February 2013 - 06:42 AM

My local celiac group broke with GIG because they were accepting non scientifically validated theories. I wonder if that was what they were talking about? I have looked and read and I found very little in the way of scientific validation for cross reactivity. I'm pretty sure that there is none for most of those things that you mentioned. There definitely is evidence for cross reactivity for oats. Botanically speaking, oats are fairly close to wheat, barley and rye. Coffee is not.

As mentioned above, some celiacs do better eliminating coffee and the best way to find out is to stop drinking it for a couple of weeks. That is a lot less expensive than a questionable test array.
  • 0

#10 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,134 posts
 

Posted 02 February 2013 - 07:09 AM

Hi Ray,

I agree with the posters before also. We all can develop intolerances ourselves, or not, but they aren't all the same for everyone. Coffee is a stimulant, but I don't think it causes D for most people. I doubt there would be very many Starbucks around if it did that. that's a pretty unpopular side affect for a product. So, IMHO, if coffee is causing you D then something may be going on there. It could be the coffee itself or something you put in it . Like creamer or other. Eliminating it for a while is a good test. I had cut out coffee a few years ago and all caffeine, but I can now drink black tea. I haven't tried coffee though.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 eers03

 
eers03

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 224 posts
 

Posted 16 February 2013 - 05:28 PM

Ray, when I saw my Celiac specialist at Mayo he told me that coffee does not have gluten in it. I mentioned the same points that you just did regarding cross sensitivity. He was not the least bit concerned about me consuming coffee.

However, the dietician there did not want to see me exceed a 3 cup serving per day. Hope this helps.
  • 0
Diagnosis 11/2012




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: