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Accuracy Of Testing, Symptoms, And Gene Testing?

elliemay32

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elliemay32 Newbie
elliemay32
Posted

Hi, I'm new here, and I am hoping someone might have some advice/info that might help me out. Here is some history: I was diagnosed with GERD as a 24 year old (all the symptoms came on kind of suddenly), no meds helped, so they did a surgery to fix it. Sort of improved for a year or so, then symptoms came back. Also diagnosed as IBS (which I think just means, we don't know what is causing your issues), after a myriad of testing etc. I have had 2 tests for Celiac's, 1 inconclusive, 1 negative. I had also tried gluten free, and didn't really feel any improvement (only did this for about 1-2 weeks since testing didn't validate it). Both tests were before having my son. Now, after having him, things are on the rise again. Most notable are the horrible stomach cramps/pain either right after eating, or within 1 hour, and diarrehea. ( I also am hypothyroid, very low adrenal, vitamin D def., and low progesterone, have been anemic, but not sure if I am now) I decided to cut out all breads, etc. I still ate rice and corn products, to see if my symptoms improved, and it seemed to help (been on it for a little over a week). Went off that diet the past four days, and the horrible cramps and diarrehea have come back. I am obviously believing it was adding the grains back in, but I am confused. Is it possible for my testing to say negative but my still having the disease? I'm wondering if maybe the pregnancy/birth triggered the celiac's in me and if I got tested now it might be positive? I'm going gluten free again now because I felt so much better, but I'm concerned about the possiblity of my having the genes, and having passed them onto my son. Any insight would be so great. I also wondered if anybody knows about the gene testing, how it is done, how much is it, etc. Thanks for your time!

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Kamma Explorer
Kamma
Posted

I don't think they do gene testing in Canada, where I am located, but they do it in the US. Perhaps someone else can speak to that.

Regarding your testing, some people have tested negative on the celiac panel but have had positive biopsies, some people test negative but respond exceedingly well to going gluten free and some people are IgA deficient so the ttg IgA test will show up as normal. I'm assuming that they tested you for IgA deficiency.

Keep in mind that non-celiac gluten intolerance will not show up as a positive on a test designed for celiac. NCGI exists and they are currently designing diagnostics tests specifically for it.

The best indicator, in my opinion, is if you respond to going gluten free and you find an abatement in your symptoms. I'd keep going with the gluten-free diet. You have nothing to lose and so much to gain. You can always give yourself at least six months on the diet (and be strict! :)) to see if it helps.

guest134 Apprentice
guest134
Posted

They don't do genes in Canada. It is possible to do it but you will have to send it to a U.S lab and must be prepared to pay an arm and leg (I am talking 500 to 1000 dollars).

peeptoad Apprentice
peeptoad
Posted

Keep in mind that non-celiac gluten intolerance will not show up as a positive on a test designed for celiac. NCGI exists and they are currently designing diagnostics tests specifically for it.

This is cool and I wasn't aware of this... do you have any more information about these new tests?

Kamma Explorer
Kamma
Posted

This is cool and I wasn't aware of this... do you have any more information about these new tests?

Only that the Centre for Celiac Research is still trying to develop them. Dr. Fassano believes, based on the evidence, that non-celiac gluten intolerance is a reaction from the innate immune system, not the adaptive immune system. I guess I should also start using the term 'gluten sensitivity' as that is the accepted name for NCGI.

Excerpt, Dr. Fassano Interview Sept/12:

"There are currently no evidence-based tests to measure biomarkers for gluten sensitivity. The Center for Celiac Research is currently conducting very promising research to develop a reliable evidence-based test.:

Full Interview continued here: Open Original Shared Link

elliemay32 Newbie
elliemay32
Posted
  • Author

Thanks for all the tips/help so far, keep it coming! I live in the US so I know I can get the gene testing, I just don't know how much and if insurance covers it. Like I mentioned, I am more concerned about whether or not my son could develop it some day. I only care about diagnosing me for certain so that we can be aware of him, especially since I know several people who had no symptoms whatsoever but have Celiacs, so waiting until he "has symptoms" doesn't seem like the best game plan to me. I would ideally like to get gene testing done on him to find out if he has either or both gene, just not sure how to go about it. If it isn't celiac's for me, then it very well may be the gluten intolerance, because even for such a short period of time off it, I felt tons better.

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