Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Cyrex Cross Reactivity Test Accuracy?
0

19 posts in this topic

Hi All,

I received my results from the Cyrex Cross Reactivity Test, and I was shocked to find out that in addition to gluten sensitivity, I cross react with a bunch of other foods including: corn, rice, potato, chocolate, quinoa and amaranth! I am so upset, since all of the gluten-free foods are made with rice, corn and/or potato flour! So, after 3 years of eating what I thought was gluten-free, I was eating foods which my body recognized as gluten.

I am wondering if anyone else has done this Cyrex cross reactivity test, and found it to be accurate? Did your health improve further when you removed the offending foods? I want to get some feedback from people who have actual experience with this test before I drastically change my diet again. Thank you!

Laura

1

Share this post


Link to post
Share on other sites


Ads by Google:

I had a blood test for antibodies.  I don't know how that compares to your test, because it wasn't the same test.  I have felt better since only eating foods I didn't react to.  I would give it a try!  I hope you can find substitutes, I have been doing okay with that.  I wish you well and encourage you to keep proceeding with your mind analyzing.

 

Diana

0

Share this post


Link to post
Share on other sites

This whole cross reactive hype is total nonsense.  The only thing your body recognizes as gluten is gluten itself.....wheat, barley, rye and oats, in some people.

If you have been having symptoms after going gluten-free, then you most likely have additional intolerances or something else going on.  Many Celiacs cannot tolerate other grains or potatoes for awhile but can add them back in after their gut has healed.  I would disregard this and focus on figuring out what foods bother you with a journal.  Then you can try adding them back in when you feel better.

1

Share this post


Link to post
Share on other sites

Wow, okay, thanks for the info. So it seems like many people don't think this test is valid. That may be true, it is hard to tell sometimes.

0

Share this post


Link to post
Share on other sites




Wow, okay, thanks for the info. So it seems like many people don't think this test is valid. That may be true, it is hard to tell sometimes.

 

 

I don't think they are valid because there is no medical evidence they are valid.  Unfortunately, in the US, it appears you can make many medical claims with no proof.

0

Share this post


Link to post
Share on other sites

Hi All,

I received my results from the Cyrex Cross Reactivity Test, and I was shocked to find out that in addition to gluten sensitivity, I cross react with a bunch of other foods including: corn, rice, potato, chocolate, quinoa and amaranth! I am so upset, since all of the gluten-free foods are made with rice, corn and/or potato flour! So, after 3 years of eating what I thought was gluten-free, I was eating foods which my body recognized as gluten.

I am wondering if anyone else has done this Cyrex cross reactivity test, and found it to be accurate? Did your health improve further when you removed the offending foods? I want to get some feedback from people who have actual experience with this test before I drastically change my diet again. Thank you!

Laura

Laura

 

So little is known about cross reaction today that you will not find very much information about it. It is still in the research stage. The only thing known is that it really does exist, except the exact mechanism is unknown.

 

National Institutes of Health (NIH) study:

http://www.ncbi.nlm.nih.gov/pubmed/17475890

0

Share this post


Link to post
Share on other sites

This whole cross reactive hype is total nonsense.  The only thing your body recognizes as gluten is gluten itself.....wheat, barley, rye and oats, in some people.

If you have been having symptoms after going gluten-free, then you most likely have additional intolerances or something else going on.  Many Celiacs cannot tolerate other grains or potatoes for awhile but can add them back in after their gut has healed.  I would disregard this and focus on figuring out what foods bother you with a journal.  Then you can try adding them back in when you feel better.

Respectfully, I must disagree. I seem to be sensitive to corn in a way that is indeed cross-reactivity. Corn triggers my celiac disease. I had given up wheat for years when i was suddenly having full-fledged gluten reactions -- those hours-long, agonizing attacks that empty your guts? The kind of attacks that lead me to cry real tears. And I didn't cry or scream or yell when giving birth to my daughter, either. 

 

I went to the GI doc totally mystified, told him I had been eating a lot of popcorn (one of my favorite foods, forever) and he said it was the corn. I stopped the corn, and the nasty attacks went away. But I continue to have trouble, and I continue to have low-level symptoms of gluten problems -- I'm sure you know the kind, where your poop is the wrong color and the wrong consistency, and you have some pain, but it isn't agonizing, as in worse than childbirth -- and perpetual symptoms of vitamin and mineral deficiencies. 

 

I got so sick, so depleted, I stopped taking my blood pressure meds when I ran out because it was too much trouble to do what needed to be done to get some more. And for the first time in a couple of years, those low level problems I was having stopped. they are back now, I think because so many meds have corn in them, and I simply cannot always not taking any of them. 

 

You may say the problem is wheat contamination. BUt I must disagree there, too. I accidentally ate some wheat a while back, and expected a terrible reaction. But I had none. No reaction. Nothing. That means I have truly been avoiding wheat and had no antibodies circulating. (I have confirmed the celiac thing by going back on wheat for months, and having the reaction build up to full-fledged from nothing over a period of about two months.) So, if I am constantly in a state of low-level reaction, and it isn't to wheat, and corn is in almost everything, then I think corn is what is causing me so much trouble. ANd when I do successfully cut those small amounts of corn out, I get better. But it is not possible to avoid it completely, unfortunately, at least, not for me. Not until they do something about it, and not until I can get compounded meds. And that won't happen until there is widespread acceptance that corn can cause cross-sensitivity reactions. As far as I am concerned, it absolutely can. 

0

Share this post


Link to post
Share on other sites

Respectfully, I must disagree. I seem to be sensitive to corn in a way that is indeed cross-reactivity. Corn triggers my celiac disease. I had given up wheat for years when i was suddenly having full-fledged gluten reactions -- those hours-long, agonizing attacks that empty your guts? The kind of attacks that lead me to cry real tears. And I didn't cry or scream or yell when giving birth to my daughter, either. 

 

I went to the GI doc totally mystified, told him I had been eating a lot of popcorn (one of my favorite foods, forever) and he said it was the corn. I stopped the corn, and the nasty attacks went away. But I continue to have trouble, and I continue to have low-level symptoms of gluten problems -- I'm sure you know the kind, where your poop is the wrong color and the wrong consistency, and you have some pain, but it isn't agonizing, as in worse than childbirth -- and perpetual symptoms of vitamin and mineral deficiencies. 

 

I got so sick, so depleted, I stopped taking my blood pressure meds when I ran out because it was too much trouble to do what needed to be done to get some more. And for the first time in a couple of years, those low level problems I was having stopped. they are back now, I think because so many meds have corn in them, and I simply cannot always not taking any of them. 

 

You may say the problem is wheat contamination. BUt I must disagree there, too. I accidentally ate some wheat a while back, and expected a terrible reaction. But I had none. No reaction. Nothing. That means I have truly been avoiding wheat and had no antibodies circulating. (I have confirmed the celiac thing by going back on wheat for months, and having the reaction build up to full-fledged from nothing over a period of about two months.) So, if I am constantly in a state of low-level reaction, and it isn't to wheat, and corn is in almost everything, then I think corn is what is causing me so much trouble. ANd when I do successfully cut those small amounts of corn out, I get better. But it is not possible to avoid it completely, unfortunately, at least, not for me. Not until they do something about it, and not until I can get compounded meds. And that won't happen until there is widespread acceptance that corn can cause cross-sensitivity reactions. As far as I am concerned, it absolutely can.

It does sound like you might have a problem with corn. That does not mean your body thinks its gluten. Your body thinks its corn and doesn't like corn. Maybe wheat/ gluten isn't your issue at all? You didn't react to it when you had some. Maybe it's the corn?

0

Share this post


Link to post
Share on other sites

Sounds like you have a corn problem, as kareng stated. Corn protein can give some people grief but it's because they are allergic or intolerant of corn.  Many poeple have a corn problem without having a wheat problem.  You can certainly choose to believe what you want but either way, you should not eat corn. And, yes, it is in everything so you'll have to be vigilant about not ingesting it.  BTW...popcorn is really hard to digest and if you do have Celiac and your gut is compromised, you will have trouble digesting popcorn because it's hard to digest anyway.

 

Most people react more violently to wheat after eliminating it from their diet. Some people can eat lots of wheat, as a Celiac, and not react at all, due to being asymptomatic.  It does happen.  It sounds like you do not know 100% for sure what is causing your problems. Did your doctor ever run a Celiac panel on you?  The fact that you did not react to wheat does NOT mean that you have no antibodies circulating...only blood work will confirm or deny that and only if you have suffienct IgA to run the panel correctly.  Where have you been reading this type of erroneous information?

0

Share this post


Link to post
Share on other sites

I'm posting late to this thread but the topic is important so am adding my thoughts just in case it helps someone else in the future.

 

As I understand it, the theory behind cross reactivity (and yes, scientific research is beginning to document the problem, specifically regarding corn) is pretty basic. While a gluten protein chain is long and contains many segments, only short sub-segments (as small as three links in the chain) are recognized as toxic. Those same short segment sequences occur in other the protein chains of other foods as well and, for some, the body will also start to react to them because it doesn't distinguish one food from another, just one sequence in the chain from another.

 

The issue is complicated by the fact that the body isn't always reacting to a single segment of the chain. It is possible to develop multiple sensitivities along the chain. Again as I understand it, cross reactivity is totally based on the specific antigens your body has developed. The fewer, the better, obviously.

 

I, personally, cannot tolerate any of the 'gluten free' products on the shelves. And, yes, it is depressing.

 

PaleoMom gives the best explanation I have seen so far:  http://www.thepaleomom.com/2013/03/gluten-cross-reactivity-update-how-your-body-can-still-think-youre-eating-gluten-even-after-giving-it-up.html

 

 

 

 

0

Share this post


Link to post
Share on other sites

I'm posting late to this thread but the topic is important so am adding my thoughts just in case it helps someone else in the future.

 

As I understand it, the theory behind cross reactivity (and yes, scientific research is beginning to document the problem, specifically regarding corn) is pretty basic. While a gluten protein chain is long and contains many segments, only short sub-segments (as small as three links in the chain) are recognized as toxic. Those same short segment sequences occur in other the protein chains of other foods as well and, for some, the body will also start to react to them because it doesn't distinguish one food from another, just one sequence in the chain from another.

 

The issue is complicated by the fact that the body isn't always reacting to a single segment of the chain. It is possible to develop multiple sensitivities along the chain. Again as I understand it, cross reactivity is totally based on the specific antigens your body has developed. The fewer, the better, obviously.

 

I, personally, cannot tolerate any of the 'gluten free' products on the shelves. And, yes, it is depressing.

 

PaleoMom gives the best explanation I have seen so far:  http://www.thepaleomom.com/2013/03/gluten-cross-reactivity-update-how-your-body-can-still-think-youre-eating-gluten-even-after-giving-it-up.html

 

 

Sorry.  I don't consider a blogger to be scientific evidence.  

0

Share this post


Link to post
Share on other sites

Sorry.  I don't consider a blogger to be scientific evidence.  

That blogger is an award winning Phd who spent the majority of her professional life in medical research.

0

Share this post


Link to post
Share on other sites

"We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support."

 

http://www.cureceliacdisease.org/archives/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex

 

 

"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."

 

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

0

Share this post


Link to post
Share on other sites

I am intolerant corn. My reation to corn is different than my reaction when I'm glutened. I am also intolerant to nightshades. Once again, a totally different reaction than I get to either corn or gluten. I can't eat blueberries either. But it's not the same as my reaction to the other things. I would think if these were so-called "cross-reactive" reactions, they would all be the same.

 

Also, if there were any truth to this, why aren't we ALL reacting to the same things?

0

Share this post


Link to post
Share on other sites

"We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support."

 

http://www.cureceliacdisease.org/archives/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex

 

 

"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."

 

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

 

I understand what you are saying and this is a controversial subject. The theory makes sense, however, and understanding it has helped me significantly. And it is important to note that not everyone with celiac reacts to foods other than the standard gluten ones. We probably see a higher percentage here because you have to be pretty desperate to spend a lot of time on a disease forum looking for answers.

 

Personally, I'm not interested in going the Cryex or Eurolab route and I have no idea how accurate the tests are. I don't need a lab test to tell me that my forbidden list includes corn, soy, rice and nightshades. And I certainly don't need to spend a small fortune to know that I have yet to find a 'gluten free' product on the shelf that didn't make me sick.

 

Anyway, beyond the accuracy of lab tests, the following info might prove useful for some. I still prefer the way it is explained by the link provided above.

http://www.scirp.org/Journal/PaperInformation.aspx?paperID=26626

http://www.ncbi.nlm.nih.gov/pubmed/22298027

http://www.ncbi.nlm.nih.gov/pubmed/371884

http://gut.bmj.com/content/54/6/769.full

http://www.usbiotek.com/Downloads/information/criticalReview.pdf

http://publications.nigms.nih.gov/structlife/chapter1.html

0

Share this post


Link to post
Share on other sites

Also, if there were any truth to this, why aren't we ALL reacting to the same things?

 

Again, based on my understanding of the theory, it is entirely dependent on the specific antibodies your body has developed.

 

Honestly, read the link. It is fascinating.

 

I've taken too much space on this thread :( Sorry. I'll leave you all alone now.

0

Share this post


Link to post
Share on other sites

I determined that I had a problem with a number of the things from the cross reactivity panel before actually knowing about the test from Cyrex so had an aha moment when I found this out.  The Paleo Mom doesn't write anything that she cannot back up with science.  Cross reactivitydoes exist - otherwise there would not be any such thing as oral allergy syndrome!  I've found that if I eliminate my cross reactants for several months, I can reintroduce in small amounts so, it seems to me, that cross reactivity is concentration dcependent (concentration of my antibodies) which makes sense.  Finally, I cannot remember the exact number, but there are numerous epitopes (small chains of amino acids that the antibodies react to) to which celiacs can react.  I might have an antibody response to epitope 1 and 6 which cross react with coffee  while someone else might have and immune response to epitopes 2 and 9 which might cross react to amaranth or something else which explains why we all react to different things.  As for corn reactors, take a look at this paper http://www.ncbi.nlm.nih.gov/pubmed/24152750

0

Share this post


Link to post
Share on other sites

.  Cross reactivity does exist - otherwise there would not be any such thing as oral allergy syndrome!  I

 

 

Allergies are different than Celiac disease.  Currently there isn't evidence that there are other foods besides gluten that cause Celiac disease.

 

 

http://www.cureceliacdisease.org/archives/faq/whats-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."

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,890
    • Total Posts
      919,515
  • Topics

  • Posts

    • Easy Soy-Mirin Glazed Salmon (Gluten-Free)
      If you're looking for and easy yet exotic way to serve fish, look no further than this soy and mirin glazed salmon. It's easy to make and offers a delicious departure from standard fare. View the full article
    • Mexican?
      Chipotle is one of my favorite places to eat, but it is a 50/50 chance of having a reaction due to cross-contamination.  Yes, they graciously make an effort to be gluten-free and will change gloves.  BUT, before that they used gloves and handled flour tortillas and then used same gloves to reach into the lettuce and cheese--voila--cross-contaminated food.  Changing gloves for you does not avoid this cross-contamination problem.  I started having reactions and my daughter advised me to avoid all the corn products there because of what she read on their website about allergens--so no more chips, or crispy taco shells, or corn.  I also avoid the green salsa and the pico de gallo--not that I am aware of cross contamination but she never eats that there and she has been successful at not having reactions, so that is what I do now and have had much success. Here is what I get:   burrito bowl with either white or brown cilantro lime rice, grilled veggies, black beans, barbacoa, red salsa, cheese, sour cream, guacamole, and lettuce on top.  So GOOD! and so far, safe for me.
    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle.   To be honest, to this day I am not sure if I actually had zoster sine herpete.  It was one of several suggestions by bewildered doctors.  What I can tell you is that I had to have MRIs  because one doctor thought I might have trapped nerve in my spine and I thought it would reveal something dreadful being the sort of person who gets weird nerve sensations - and it didn't reveal a thing.   It was unsettling to have symptoms like that for so long but what made me think my brother in law might have been right was because the worst of the symptoms lasted a year which I gather is pretty typical (but don't panic, because they can go a lot faster!)   My nutritionalist told me that if we get run down we are more prone to shingles so that is something to watch. Easy to say (and I'm speaking to myself here!) try not to spend too much time by yourself worrying about these things because anxiety never helps with nerve pain. I found that rest was very beneficial so I would recommend you try to get as much of that as you can.  Also, someone suggested a warm bath for 20 minutes with some Epsom salts.  That helped too. As I say, just one reason you might be getting this pain but I would continue with the investigations and perhaps mention the pain to your doctor and ask if it could be shingles.      
    • Rudy's Not Gluten Free
      Rudy's is one of my favorite places to eat, but you do have to be VERY careful due to cross-contamination.  I always get the cutter's choice brisket, some form of potatoes (new potatoes or baked potato), pinto beans, 3-bean salad and use generous slathering of their regular BBQ sauce, not the Sissy Sauce.   My daughter has gotten sick a couple of times dining with us at Rudy's, but we have narrowed down the culprit to cross contamination.  She usually orders the stuffed baked potato, gets brisket (chopped up)--not the chopped BBQ, and asks them to use a new plastic knife to  cut open the potato.  They use tissue to pick up the chopped meat and put it on the potato which also comes with sour cream, butter/margarine, and grated cheddar cheese.  They have always been very courteous about accommodating us.  This has eliminated my daughter from having reactions.  (The regular metal knife had been used on bread.)  I also reach over the tray as it is being filled and place one of their paper tissues over my meat or potato so that when they place my husband's bread slices or sandwich (made with regular bread), crumbs won't get on my food.  I am so thankful for Rudy's--it is so good--and with taking these precautions, I believe it is relatively safe.  
    • I'm actually scared to go to the doctor and could use some advice
      Thank you, squirmingitch. I'll pass that on to Mom, too. Cristiana, did they ever determine what caused your nerve pain or do you now think it was related to Celiac? That form of shingles sounds awful (well, any form sounds awful - my mom's had it 3 times!) and fortunately I do not think that's what's ailing me.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,936
    • Most Online
      1,763

    Newest Member
    Emmyow
    Joined