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Testing Questions....

kpryan

By kpryan
in Coping with Celiac Disease

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kpryan Apprentice
kpryan
Posted

I've been gluten free now for about 2 years. I had first asked my allergist about gluten intolerance/celiac and he said the best test was to eliminate it and see if I felt better. I did eliminate it and fairly quickly felt better than I had my whole life.

Then a new Celiac clinic opened up. And they were offereing Celiac screenings. So I contacted the nurse in charge, told her i wanted to be screened but that I was already eating gluten-free. She said to eat gluten the 2 weeks leading up to the test. I did that (and felt terrible) and was tested. They did 2 blood tests (I think it was Total IgA and Trans IgA...I have them at home) but the results were within the normal range. Since they were normal, the center didn't pursue any further testing.

Regardless of the results, I continued my gluten-free diet b/c I felt so much better off it. But to this day, I wonder if those results were right. Was 2 weeks enough to be eating gluten for? What I read now suggests that you should be eating gluten for 6 weeks for it to show up on a blood test....

I won't be going back to eating gluten to get tested again. But now I am thinking that I might get the gene test done. If I have the gene, then I know that there's a possibility of celiac vs a gluten intolerance. Plus I know that I may have passed it to my daughters.

I don't know why but I just feel like I need to know....like I feel like a hypochondriac if I don't have some kind of "answer".... stupid I know....

Any opinions/advice? Thanks!

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julandjo Explorer
julandjo
Posted

Well I'm sort of in the same boat. I had been gluten free for 3 months (not nearly as long as you!), then I saw a GI doctor who wanted to run the bloodwork. [i'm hoping to get a diagnosis so that my kids, who have been gluten free since birth except for a few 2-3 day trials that yielded horrible results, can be diagnosed without having to ever go through the testing. No way would I have them eat gluten for weeks and weeks!]

Anyway, I don't have my results yet. They ran the Prometheus Celiac Plus test, which does the serum and the genes. The doctor and nurse both assured me that 2 weeks on gluten, as long as I "hit it hard", should be sufficient. I felt like garbage the whole time, but I really have my doubts whether it was long enough. We'll see I guess...

Philippa Rookie
Philippa
Posted

I don't think 2 weeks is long enough. I thought the standard gluten challenge was 3 months.

I don't know what to advise regarding how to proceed. The thought of eating gluten on purpose even for a week sounds awful to me. However, there are advantages to a definitive diagnosis. If it were me though, I don't think I'd eat the gluten.

lucia Enthusiast
lucia
Posted

I thought the bloodwork was independent of whether or not a person was eating gluten??? (My doctor thought so.) I was negative on my IGA & IGG tests (as below), but my blood was drawn after I'd stopped eating gluten. I'd been off for 6 weeks at that point.

I'm feeling miserable today after eating some oats yesterday, in Udi's gluten-free granola. I know not everybody with gluten intolerance has issues with oats, but (at least at this point) oh, I do! I think that's a better test than these labs.

The problem is that I'm still suffering from neuropathy, joint pain, fatigue, and, probably now, depression. Could this really be from gluten if I've been off it for 2 months? I know it's possible - statistical even - but I still find myself wondering ... it's hard not to have a definite diagnosis sometimes.

GLIADIN/RETICULIN/TTG (P2752)

! TISSUE TRANSGLUTAM AB IGA

<3 U/mL <5 *1

Interpretation: Negative

Tests: (2) (P2752)

! GLIADIN AB (IGA) 3 U/mL <11 *2

Interpretation: Negative

Tests: (3) (P2752)

! GLIADIN AB (IGG) 7 U/mL <11 *3

Interpretation: Negative

Tests: (4) HLA TYPING,CELIAC DISEASE (17135X)

! HLA-DQ2(DQA*05/DQB1*02)

Negative *5

! HLA-DQ8(DQA*03/DQB1*0302)

Positive

WheatChef Apprentice
WheatChef
Posted

The blood tests can only tell you if you have a gluten problem, not if you don't. Your allergist was correct in the best form of "testing".

txplowgirl Enthusiast
txplowgirl
Posted

You need to be eating the equivelant of about 2 to 3 slices of bread for a good 2 to 3 MONTHS for the tests to show positive and even then you still may show negative. That is why for some people it can take up to 10 years or longer to get a diagnosis.

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