Should I Bother With Further Testing?

[ThisIsMyUserName]

I've got a diagnosis of non-celiac gluten intolerance from my GI; my symptoms were horrible and abated with gluten-free, and a one-time gluten challenge (single blind, sine I ate a *lot* of gluten thinking it was gluten-free) led to three days of horirble symptoms. I don't see any ambiguity that gluten is a problem. Biopsy negative for celiac, blood test negative for celiac. I am curious, though, whether what I have is sort of a pre-celiac or an unrelated thing; I'm not sure the science is even caught up here, but I've seen studies where a significant percentage of people with intolerance but not celiac have celiac genes, or that they may be on the road to celiac. Should I bother getting the genetic tests? I can see a few upsides: being pre-celiac would lead me to never, ever try gluten again, whereas if I thought it might be a random intolerance, I might try a challenge every few years. Also, knowing the genetics would help me in deciding whether to watch my kids closely on this topic. Are there downsides (expense? not good to have on your medical record? invasive?)? Are there other tests that might help figure out why I have what I have?

[cyclinglady]

You could ask for the gentic test. It would help you rule out celiac disease.

I think you just have to bite the bullet and go gluten free as a long-term test. Can it be done? Sure. My husband has been gluten-free for 14 years now. He went gluten-free per the advice of my allergist and his GP. There was a steep learning curve, but he found that it worked. We definitely know when he has been glutened. Feeling good has kept him on the diet. He refuses to do a gluten challenge and I can not blame him. We know that gluten makes him sick.

But....do not discount other things that could be causing you symptoms. Try keeping a food diary to uncover possible food intolerances.

As far as your medical record is concerned, I do not think it is as important. We are self-employed and I waited until the Affordable Healthcare Act kicked in before testing my symptomless daughter.

[nvsmom]

I agree.  Get the test done some time in the future if you wish but it isn't needed - you already have a diagnosis of NCGS.  Don't discount the seriousness of NCGS though.  Those with NCGS can have the same symptoms as a celiac, just without the dh skin rash or villious atrophy.  They can have ataxia, arthritis, GI problems, neuropathies, migraines, fatigue and a boatload of inflammation which can lead to other health issues.  If you have NCGS, you do need to be gluten-free too.

 

Did you have all of the blood tests done?  It is not unusual to get a false negative celiac test, for the older anti-gliadin antibodies tests, false negative results can occur for over half of all celiacs.

 

These are the tests:

tTG IgA and tTG IgG

DGP IgA and DGP IgG 9deaminated gliadin peptides)

EMA IgA

total serum IgA

AGA IgA and AGA IgG (antigliadin antibodies)

 

You need to be eating gluten in the 2-3 months prior to testing for the tests to be as accurate as possible.

 

Best wishes.