Cyrex Cross Reactivity Test Accuracy?

[laura4669]

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

[kareng]

Well...you paid a lot of money.  They have to give you something to make it seem it was worth it.  There is no scientific basis for this "cross-reactivity" stuff, either.

 

 

Open Original Shared Link

 

 

Open Original Shared Link

[1desperateladysaved]

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

[Gemini]

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.

[laura4669]

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.

[kareng]

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.

[L8discovery]

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:

Open Original Shared Link

[etm567]

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. 

[kareng]

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?

[Gemini]

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?

[Foolish-Michie]

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:  Open Original Shared Link

 

 

 

 

[kareng]

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:  Open Original Shared Link

 

 

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

[Foolish-Michie]

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.

[kareng]

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

 

Open Original Shared Link

 

 

"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."

 

Open Original Shared Link

[bartfull]

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?

[Foolish-Michie]

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

 

Open Original Shared Link

 

 

"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."

 

Open Original Shared Link

 

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.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[Foolish-Michie]

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.

[biochemmama]

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 Open Original Shared Link

[kareng]

.  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.

 

 

Open Original Shared Link

 

"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."