This Testing Is Starting To Mess With My Head...

[Mum in Norway 4]

Sooo long story short.

I have suspected that I have celiac for years, but been told I don't by a doctor soly based on a hometest that only tests for tTg IgA.

Then this spring, after beeing glutenfree light for years, another doc wanted to give me propper testing when I mentiond this when I was just in for a regular allergy test (pollen, mainly).

This test came back almost normal, exept DGP IgG was 9, when it was suposed to be less that 7. Some reserch, and i found that had it been 10 it would have been considerd positive for celiac, so I called the doctor and explained that as I had been glutenfree light for years and the test was borderline positive, maybe I needed to do a gluten challange for a few weeks to see if that changed anything? Yes, that was a good idea, says doc.

So I started my challange, and got reeeealy ill. After two weeks I gave up and had the second test done. My DGP IgG was now 10, but I do not know if any of the other antibodys had changed as I do not have a print of the results, only told that all the others was within the normal range.

But this was enough for doc to order a biopsy.

The hospital told me to follow a 'normal' diet (bread 3 times a day an something containing gluten for dinner two or three times a week) for two months.

This made me so so sick, I could not even go to work. But I survived.

A week ago I decided to have a third bloodtest done. I figured it would be hard to believe it if the biposy came back negative, but if I also saw that the antibodies in my blood had not changed, I would trust the result and conclude I 'just' have gluten sensitivity.

I had the biopsy 5 days ago, so I don't have the results yet, But I called today to ask about the bloodtest.

Funny thing!

DGP IgG was now 11! I would have thought it would be a little more positive by now, if I actually do have celiac? But still, that IS positive, and I do get really ill from consuming gluten.

I have not seen the results yet, I was only told on the phone that DGP IgG is 11 and that tTg IgA is less than one, when normal is less than 7. I'm going by the docs office later today to get a copy of the results.

 

What am I suposed to make of this?

More elevated = I have celiac?

Only slightly more elevated after two months of challange = not significant?

 

I do know that DGP IgG is very spesiffic for celiac, like 98-99%.

[ravenwoodglass 1,403]

Have they ever tested your total IGA? If that is low that would cause a false negative on the IGA testing. Your other test was positive and you reacted badly to the challenge. No matter what label you are given by the doctors your body is telling you it needs you to avoid gluten. I hope you get a clear answer from the biopsy but those can also be a false negative for many reasons.

Glad your done with testing and can now just go gluten free and heal. Hope you feel better soon.

[Mum in Norway 4]

For some more strangeness; I now got the full results of all my three tests. And that shows that as my serum IgA has been at a stabile 2,2, the tTG IgA has gon from 2 on the first test throug 1 on the second and is now <1. WHAT is THAT about!?

 

Thank you ravenwoodglass, I have been glutenfree for a week now and already feel so much bether

[nvsmom 334]

The antibody level aren't completely linked to the amounts of gluten you eat. Some people have total villi damage yet they don't have positive blood tests, and others might have sky-high blood tests yet have no, or just minor damage to their villi. There are "classic" cases where antibody levels, villi damage, and gluten amounts consumed correlate perfectly but that is not everybody... I doubt it is even the majority of celiacs.

 

When I was diagnosed, I had two blood tests done: EMA IgA and tTG IgA. Both were positive. After over a year gluten-free, my EMA was negative but my tTG IgA was still positive - not as high as it was, but still positive. Those autoantibodies can linger a looong time, and conversely take a long time to build up to measurable levels.

 

You have two different positive blood tests on more than one occassion, which is more than many people get. You have a positive response to the gluten-free diet too, and you may end up with a positive biopsy.... It is definitely time to go gluten-free.

 

I would say you have celiac disease. Non-celiac gluten intolerance NEVER causes a positive tTG IgA or DGP IgA. A low tTG IgA can be caused by other factors but when it is combined with DGP tests, well... that really only points to celiac. So even if the doctors don't say it, I think you should claim the diagnosis for yourself. You are a celiac.

 

I hope you continue to feel better on the gluten-free diet and have very clear cut biopsy results.