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Mixy

Gluten Reintroduction Before Doing Cyrex Labs Tests

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Hi all,

 

I am new to this forum and i am very happy to have found it... 

 

I am pretty sure I have Gluten Sensitivity. (probably non-celiac). I started to get quite brain fog after lunch, and I started to suspect that the lack of focus and mood changes had to do something with food consumption 

 

So, I did an elimination diet, and I concluded that wheat could be the main cause of it . So, I went gluten-free and the brain fog is gone... every now and again i eat a bit of wheat to confirm the symptoms and yes, it does not agree with my brain... I don't have any gastrointestinal issues 

 

I would like to get tested. In a way a positive result would be a relief, because i will stop investigating, I will fully accept and I won't feel tempted to eat a slice of pizza after a couple of wine glasses.

I read about the most complete tests that would also detect non-celiac gluten sensitivity and the Array 3 test from Cyrex Labs is constantly cited as the test to do.

The "problem" is that I have been off gluten for 6 months and you need some gluten exposure before testing. The reality is that I cannot understand how much exposure you need before doing the tests. I have read different things about gluten reintroduction before the tests.

In Cyrex's FAQ I read that you need sufficient exposure to gluten of at least 25 days before the test. Instead, Dr Perlmutter (the Grain Brain author) states that that would not be necessary because "IgG levels which persist for at least a year following exposure" . I read other healthcare practitioners that recommend to eat "half a slice of bread per day for 10 days. Stop and then wait 25 days before doing your blood sample"

 

I am confused. Do you have any experience on gluten reintroduction before doing Cyrex Labs tests?

 

Thanks

 

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I am not sure why you are so positive you don't have Celiac.  Ideally, you would have gotten a legitimate medical test for Celiac before removing gluten from your diet.

 

Please read these links from actual Celiac medical doctors. If you are going to do a gluten challenge ,why not get the real tests for Celiac disease so you know what you have?

 

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

 

http://www.cureceliacdisease.org/archives/faq/can-i-be-screened-for-gluten-sensitivity

 

"Can I be screened for non-celiac gluten sensitivity?

There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity."

 

http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge


 

 

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I agree with Kareng. There's lots of people who have celiac who have mild symptoms or even no symptoms. Symptoms alone can't tell you what you have. The best bet is to reintroduce gluten for 8-12 weeks and get a full celiac blood panel from your doctor. 


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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So Mixy, it sounds like you need conclusive diagnosis at this point, which I can completely understand -- going gluten-free is a big burden from my persepective three weeks in. The realities of going really gluten-free shouldnt be dismissed or minimized -- it IS tough to turn away from donuts and office treats, and to order "special" foods when you are out with friends. It is manageable when you know for a fact that this is what you must do to avoid further repercussions. :-)

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Welcome to the board.

 

I agree that you should not rule out celiac disease yet.  My cousin's son, who also has celiac disease, only had brain fog for a symptom and nothing else.  He is tall, strong, and never gets a stomach ache unless he eats too much junk.  And remember, some celiacs get no obvious symptoms at all - low nutrients and mild anemia may not make themselves readily apparent.

 

If possible, get tested for celiac disease.  You will need to resume eating gluten for 2-3 months prior to testing for it to be accurate but if you are the type who will occasionally eat that slice of pizza with just a sensitivity, which you know you have based on symptoms, then you really should rule it out.  A celiac who once a month eats a slice of pizza, or doesn't worry about contamination, or the gluten in non-obvious places (like soy sauce) will make themselves sicker and sicker and possibly develop other health problems in the future.  :(

 

There are a bunch of tests, try to get as many as possible done.

 

As for the Igg food sensitivity tests, I think they can be useful but they are not the most reliable way to check for a gluten sensitivity.  I heard of a celiac (from my cousin who's son has celiac disease) who had it done and it came out negative (they had been gluten-free for over 6 months), and then there is my oldest son (who I know has issues with a few foods, and may be a celiac) had it done and his results were negative too.  I don't trust those tests completely to not miss some sensitivities.  I do have some friends who had it done and said they felt much better after they eliminated the positive foods from their diet, but what about false negatives like I mentioned?  Something to consider.

 

Currently the only medically accepted way to diagnose non-celiac gluten sensitivity (NCGS) is a positive response to the gluten-free diet... And you've had that.  ;)

 

Best wishes in whatever you decide to do.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Hi all

 

Thanks a lot to everybody for your great and warm replies. Much appreciated!

 

I think that you are right. If I am going to go through the challenge of reintroducing gluten, why not doing the standard celiac tests done. It makes sense

Reintroducing wheat is a nightmare though...

 

I have to admit i am very confused about Cyrex Labs Tests. On the one hand, you get very respected doctors and neurologists like Dr. Perlmutter (The grain brain) and Dr Tom O'bryan (theDr.com) recommending Cyrex tests to patients and other doctors. On the other hand, you get other very respected sources that don't recognize the tests because their lack of rigorous validation tests. So confusing...

 

Thanks again!

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Hi all

 

Thanks a lot to everybody for your great and warm replies. Much appreciated!

 

I think that you are right. If I am going to go through the challenge of reintroducing gluten, why not doing the standard celiac tests done. It makes sense

Reintroducing wheat is a nightmare though...

 

I have to admit i am very confused about Cyrex Labs Tests. On the one hand, you get very respected doctors and neurologists like Dr. Perlmutter (The grain brain) and Dr Tom O'bryan (theDr.com) recommending Cyrex tests to patients and other doctors. On the other hand, you get other very respected sources that don't recognize the tests because their lack of rigorous validation tests. So confusing...

 

Thanks again!

 

Actually.... I don't think those "doctors" with all the things to sell are considered reputable by the actual medical community.   :ph34r: 


 

 

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That's true.  I enjoyed the Grain Brain book but I noticed errors, although I can't remember what anymore, when he was discussing celiac disease.  He was off on something, as far as I understood it.  It was good reading, and I am sure there was lots of science behind it, but many of his ideas are not accepted by the medical community.  He could be wrong, or he could be ahead of his time, but I couldn't say for sure which yet.

 

Be careful of Cyrex, their tests tend to have a higher (false) positive rate than normal celiac disease tests would... and higher by a fair bit.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I agree with the above opinions on Cyrex.  Perlmutter has some interesting thoughts on Celiac and the affect on the brain which I agree with totally because I do think it affects the brain greatly, from personal experience and from what I have seen in others whom I suspect have undiagnosed Celiac.  But Tom O'Bryan really riles me because he makes a lot of money from trying to be a Celiac expert when in reality, he is a chiropractor.  I have a world of respect for chiropractors because I have a phenomenal one myself but I don't ask him for GI opinions, just bone and muscle issues.  I think O'Bryan rips people off so have no use for his supposed expertise.

 

Ditto for Cyrex......there is NO test for gluten sensitivity as of yet but I think, in future, this will change.  Always refer to the Celiac experts, as they exist today.  Dr. Fasano is great, although I still have issues with their protocol for diagnosis, especially where kids are concerned.  Dr. Green and those at the Chicago Celiac Disease Center....another good choice for information.  If push comes to shove, then you can always do a dietary trial to see if removing gluten has any affect on symptoms you are having.  Some people may never get a definitive diagnosis but if cutting out gluten makes you feel a world better, then believe in that result. I never doubt people who tell me that not eating gluten makes them feel better. 

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You're so right, Gemini!

 

I've been gluten free for over 5 years without a definitive diagnosis. The only thing that really matters to me is being a productive functioning member of society! LOL!

 

It's important to do the testing first, but after all testing is complete, you can always try the diet strictly. It's perfectly okay to refuse all forms of gluten with no doctor's note. Lots of us do it! :)


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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You're so right, Gemini!

 

I've been gluten free for over 5 years without a definitive diagnosis. The only thing that really matters to me is being a productive functioning member of society! LOL!

 

It's important to do the testing first, but after all testing is complete, you can always try the diet strictly. It's perfectly okay to refuse all forms of gluten with no doctor's note. Lots of us do it! :)

 

BlessedMommy, I think that you have the right approach to it. If you feel better gluten-free that should be enough reason to do it. In a way, I think it is a psychological issue that somehow I would feel more reassured with the positive result of the test, even though I would probably end up eating the same food as now... It is the strange feeling of knowing... :-)

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I agree with the above opinions on Cyrex.  Perlmutter has some interesting thoughts on Celiac and the affect on the brain which I agree with totally because I do think it affects the brain greatly, from personal experience and from what I have seen in others whom I suspect have undiagnosed Celiac.  But Tom O'Bryan really riles me because he makes a lot of money from trying to be a Celiac expert when in reality, he is a chiropractor.  I have a world of respect for chiropractors because I have a phenomenal one myself but I don't ask him for GI opinions, just bone and muscle issues.  I think O'Bryan rips people off so have no use for his supposed expertise.

 

Ditto for Cyrex......there is NO test for gluten sensitivity as of yet but I think, in future, this will change.  Always refer to the Celiac experts, as they exist today.  Dr. Fasano is great, although I still have issues with their protocol for diagnosis, especially where kids are concerned.  Dr. Green and those at the Chicago Celiac Disease Center....another good choice for information.  If push comes to shove, then you can always do a dietary trial to see if removing gluten has any affect on symptoms you are having.  Some people may never get a definitive diagnosis but if cutting out gluten makes you feel a world better, then believe in that result. I never doubt people who tell me that not eating gluten makes them feel better. 

 

 

I really enjoyed Grain Brain, because he was describing something I was really experiencing, a very annoying brain fog which disappeared once i was off wheat.  I felt very closed to his neurological perspective of gluten in general. 

The  part that still really baffles me is that a respected neurologist which book and thoughts are backed by science would recommend a test procedure he does not think it works or that creates false positives. I just cannot understand why he would use many success stories in his book about patients who were diagnosed gluten sensitive after doing a non believable cyrex lab test, and then use science to describe his theories

 

I am not saying he is right, I am just saying it is confusing :-)

 

I have respect for Dr. Fasano too. I will also check more the  Chicago Celiac Disease Cente, which was also cited by @kareng in her reply

 

Thanks again!!!

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I really enjoyed Grain Brain, because he was describing something I was really experiencing, a very annoying brain fog which disappeared once i was off wheat.  I felt very closed to his neurological perspective of gluten in general. 

The  part that still really baffles me is that a respected neurologist which book and thoughts are backed by science would recommend a test procedure he does not think it works or that creates false positives. I just cannot understand why he would use many success stories in his book about patients who were diagnosed gluten sensitive after doing a non believable cyrex lab test, and then use science to describe his theories

 

I

 

I am not sure he is actually an MD neurologist?  I am having trouble finding anything but himself calling himself a "functional neurologist".  He may be an MD neurologist?  I can't tell.  Is he one of the owners of that lab?  I don't know.  I have spent too much time on him and that company.  I wish the US would have some regulations about this stuff!   :angry:

 

Anyway.... if you are going to have to eat gluten, you might as well get a test that all medical doctors will recognize and your insurance will pay for.


 

 

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I agree , with all that said! Eat a slice of pizza for me please!! Some Celiacs have no symptoms. So don't dismiss , just having brain fog. I think if one does not get tested they are always tempted at one point or another. My daughter being one! But if your tested and know for sure, You don't have as hard a time saying no to a piece of pizza. 


Recovering Gluten Eater 

DX'd June 17th 2013

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I agree , with all that said! Eat a slice of pizza for me please!! Some Celiacs have no symptoms. So don't dismiss , just having brain fog. I think if one does not get tested they are always tempted at one point or another. My daughter being one! But if your tested and know for sure, You don't have as hard a time saying no to a piece of pizza. 

 

Yes, I should go for it. The idea scares me but I can see the benefits of getting diagnosed in the long run

 

One question I have: all the gluten challenges relate to eating wheat... would drinking a beer or two have the same effect on the tests?

Also, if you test positive in the standard celiac tests, how do you know whether it was a gluten reaction, or just a reaction to wheat for example?

 

Thanks!

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Yes, I should go for it. The idea scares me but I can see the benefits of getting diagnosed in the long run

 

One question I have: all the gluten challenges relate to eating wheat... would drinking a beer or two have the same effect on the tests?

Also, if you test positive in the standard celiac tests, how do you know whether it was a gluten reaction, or just a reaction to wheat for example?

 

Thanks!

Beer - might or might not be the same. A lot of beers actually don't have very much gluten. When they recommend a slice of bread, they know it would have enough gluten.

A Celiac test tests for antibodies that your body make to gluten. These antibodies start attacking the small intestine. Gluten is found in wheat, rye and barley. Because wheat is the most common thing people eat, it's easier to tell someone to eat Triscuits or bread. So....Celiac tests test for a reaction to gluten.


 

 

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Beer - might or might not be the same. A lot of beers actually don't have very much gluten. When they recommend a slice of bread, they know it would have enough gluten.

A Celiac test tests for antibodies that your body make to gluten. These antibodies start attacking the small intestine. Gluten is found in wheat, rye and barley. Because wheat is the most common thing people eat, it's easier to tell someone to eat Triscuits or bread. So....Celiac tests test for a reaction to gluten.

 

 

You were right about the beer. I reintroduced it without noticeable effects. The only beer that made me foggy was Guinness (I have no idea of their gluten content)

 

Another thing: this Easter I reintroduced wheat for a few days. As expected, I felt foggy. It even gave a hangover the following day (not nice). Once I went back to work, I stopped eating wheat again because I really cannot afford a foggy brain right now. My question is, if I eat wheat only on Friday and Saturday for many weeks, would that be enough exposure to do the tests?

 

Thanks 

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All the experts recommend eating gluten daily for a challenge. Sorry!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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That sounds pretty painful, but thanks a lot to you all for your replies and help

It may be. Let your doctor know if symptoms get too severe but if you are going to challenge for testing you don't want to end up with a false negative because you didn't get enough gluten. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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