Partial Blood Test Results

[greenbeanie]

I got my blood test results today. The doctor only ran a partial celiac panel, despite the fact that I'd brought in the complete list of test and also highlighted the list on a factsheet from the Chicago Celiac Center. My results:

 

TISSUE TRANSGLUTAMINASE AB, IGA: <1 (with normal as <4)

GLIADIN (DEAMIDATED) AB (IGA): 3 (with normal as <20)

GLIADIN (DEAMIDATED) AB (IGG): 2 (with normal as <20)

 

She did not run a total serum IgA test, even though I asked for it three times and showed her the part on the factsheet about how important it is to check for IgA deficiency. I've read enough at this point to know that the first two results are meaningless without knowing my overall IgA. But how reliable is the last test? Is "Gliadin (deamidated) AB IgG" just another name for the DGP test, or is it the older gliadin IgG test that is known to be unreliable?

 

I've been gluten-light for the last 15 years, then strictly gluten-free for just 12 days in April, then I ate moderate amounts of wheat daily for 18 days before the blood tests. I have so many classic symptoms of celiac (and have since childhood) that I'd really thought these tests would show something. And I know I haven't been eating a lot of gluten, so I'm a prime candidate for false negative results, but I feel so awful when I eat even a tiny bit that I was sure the tests would pick up the problem if it is indeed celiac. Fortunately, I have a referral to a GI doctor for next month anyhow, because clearly something is causing my 20+ years of diarrhea, insomnia, night sweats, deteriorating coordination, and other symptoms. So I'm still hopeful that we'll get to the bottom of this soon one way or another. And celiac still seems overwhelmingly likely to me, but at this point I'm not sure whether I'm just deluding myself because I want answers so desperately.

 

 

[nvsmom]

I agree that a total serum IgA would have been a smart test to include. Yes, only 5% of celiacs are deficient in that but 1/20 is enough that it should be checked. Hopefully your GI will run it.

 

The DGP IgG is very specific to celiac (99+%) but it's sensitivity is not as good as the other two tests (catches 70-95% of celiacs). Open Original Shared Link I agree that the other tests would be helpful to have. I do think it was the DGP test, the other one is the AGA (anti-gliadin antibodies).

 

Are you going to continue eating gluten until your GI appointment next month? If you can stomach it, it's probably a good idea to eat at least 2 servings a day so if the GI retests, the results will be more certain.

 

There is a good chance that you are Non-Celiac Gluten Intolerant/sensitive (NCGI). It is much more common than celiac disease. I've seen various stats stating that 6-30% of the population has this (most stats are closer to the 6% end). The symptoms are identical. The only difference is that celiacs have villi damage and very specific skin involvement (dh rashes), and there (frustratingly) is no way to diagnose it with blood tests - just how you feel on  the gluten-free diet.

 

Good luck! I hope you get more answers soon.

[greenbeanie]

Thanks. I am going to continue eating gluten until my GI appointment in 3 1/2 weeks, though that seems pretty overwhelming right now. I'm certainly never going to go through this again, so I'll do whatever I can in the short term to make sure the tests are accurate.

 

I have had horrible, itchy, blistering/oozing rashes since childhood too, often over large portions of my body. I have some scars from scratching it when I was younger. Right now it's only on my scalp, which I assume would be hard to biopsy, but if the GI route is inconclusive I will try to get a referral to a dermatologist. Would a gluten-free diet affect a skin biopsy for DH? 

[Deaminated Marcus]

Hi greenbeanie,

 

That is so frustrating that the doctor doesn't know about the importance of theTotal IgA

blood serum test and that she wouldn't listen to you. 

How dumb can they get. ?

Are you in Canada?

My Celiac panel was almost identical except it included the Total IgA.

 

Can you go to a walk in clinic with your test results and ask another doctor for the IgA test?

 

Yes the DGP-IgG is the newer of the Celiac tests and very specific.

 

"When tTG-gliadin undergoes hydrolysis (steals a water to cut the two apart), the result is deamidated gliadin.

Deamidated gliadin peptides are more inflammatory relative to natural peptides. "

Open Original Shared Link

 

 

It is 75 to 95 % sensitive and 99 to 100 % specific  

page 12 of Open Original Shared Link

 

So I'd say to focus on doing that one again in a few weeks.

 

 

Maybe you should chat with the ladies in the Dermatitis Herpetiformis  section.

 

Maybe that is another way for you to get diagnosed.

 

Good luck and keep us posted.

[1desperateladysaved]

When I had blood tests, they had excess blood.  Perhaps you could have them further check without another draw. Maybe you would want to wait longer since you are continuing gluten.

 

I know that feeling of feeling like you want celiac just to have answers.  The day I got my results was bittersweet.  Your symptoms are not "normal", so I hope you can get to the root of them.

[nvsmom]

I don't know much about sh except if you do get it biopsied, I believe they are supposed to biopsy the area to the side of the rash.

If no one offers advice on dh, you might want to start another thread on it, or check in the dh sub-forum.

I hope your next three weeks aren't too hard for you. Good luck.