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Hello,

Testing indicated I do not have celiac disease. However, after performing another "gluten" test on my own (after maintaining a gluten-free diet for awhile), I received my answer. Waiting on blood work to verify. Does anyone have experience with NCGS? Any helpful insights?

Thank you! 

 

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Hi ML123, could you give us more details? 

2 hours ago, ML123 said:

Testing indicated I do not have celiac disease.

Did they run a complete celiac blood panel? Endoscopy/biopsy?

(Blood tests = Gliadin IgG, Gliadin IgA, Endomysium IgG, Endomysium IgA, Tissue transglutaminase IgG, Tissue transglutaminase IgA, Total IgA)

2 hours ago, ML123 said:

another "gluten" test on my own

What do you mean, please?

2 hours ago, ML123 said:

Waiting on blood work to verify.

NCGS can't be verified by bloodwork..

This is a great forum (helped me a lot) and the members have amazing knowledge, but I think more info is needed :)

Thanks  

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Hello,

Thank you for your reply! Yes, all of those things were checked in bloodworm for celiac. The Dr. said it wasn't worth further investigation (i.e., scope, biopsy). All that appeared was a positive marker for "Q8" - but Dr. said this indicated only a 1-4% chance of developing celiac disease over the course of lifetime.

I got food allergy testing done with an MRT/LEAP test kit. Not sure the accuracy.

For my own gluten test, I had a small bite of bread. Reaction hit within 4 hours. GI distress and brain fog for 4 days.

Thank you for any insight.

 

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Were you eating a regular gluten full diet before your blood work was done? If not them you will have a false negative. Some doctors will consider a low positive to be negative or want all the tests to be positive.  You may want to get copies of the tests and post the results and the lab ranges and post them here. Many are familiar with the tests and can give you some insight. There are cases where folks have been negative with blood work but positive on the biopsy so it would be a good idea to have the biopsy done to be sure.

Blood tests for food allergies are not the same as celiac tests. They also have high rates of false positives. 

If you want further testing for celiac you have to go back to eating gluten for 3 months and then retest.  If you become too ill to continue the challenge then you have your answer but not a formal diagnosis.

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I hhad been gluten free for several years for my daughter (who also is NCGS). It turns out that I am also gluten intolerant. I went on a gluten challenge for testing. Only lasted 1 month (supposed to be 3 months long).  I did not test positive so am technically also NCGS. I haven't pursued genetic testing for either of us yet.  

But I can tell you that NCGS is no laughing matter. I do not buy that it is "only a sensitivity" and doesn't cause damage. It affected my nervous system, it felt like my teeth were going to fall out, I could barely stand up and function. The reality is that celiac testing is really good at picking up those with the intestinal damage. It is not good at diagnosing those who have already gone gluten free. It is not good at diagnosing those with neurological symptoms. 

There is no good definition of NCGS and no way to test for it.  Strict gluten free is the only treatment. The same as celiac disease. 

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1 hour ago, ML123 said:

Thank you for your reply!

You're welcome :)

1 hour ago, Feeneyja said:

But I can tell you that NCGS is no laughing matter. I do not buy that it is "only a sensitivity" and doesn't cause damage.

I totally agree.

4 hours ago, ML123 said:

Does anyone have experience with NCGS? Any helpful insights?

Yes, I have NCGS. My blood tests were negative and I didn’t pursue an endoscopy/biopsy. It was my personal choice – the main reason was that I don’t trust doctors in my country enough to let them perform it. There are risks involved – e.g. small intestine perforation. They ask you to sign an informed consent before the procedure, so even if something happens, it’s never their fault, of course (!).  

So, yes, I may be an undiagnosed celiac, in fact.

I’ve decided not to worry about not having a formal diagnosis. I stick to the gluten-free diet, don’t cheat and like cooking so I actually enjoy the food I eat and don’t feel deprived really.

As Feeneyja said, it is not uncommon to have neurological symptoms as a NCGS. In my case these were migraine headaches, diziness, vertigo, brain fog, fatigue, tingling in my left arm, anxiety and irritability.

Going off gluten has helped a lot! :) 

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