Testing

[GlutenFreeAustinite]

I know I've been posting a lot, but I wanted to get some opinions here.

I'm 18 years old. All my life I've been very susceptible to infections. I always had ear and eye infections growing up. I had a stubborn staph infection in my junior year that wouldn't go away. I battle yeast infections every month. This year, I was diagnosed with an atypical mycobacterial infection on my leg, that despite nearly four months of doxycycline, still is not fully cleared up.

In 2006, I was diagnosed with gastritis after severe stomach pains landed me in the ER. I've always had a queasy stomach.

In 2009, I began suffering daily migraine headaches. I went gluten free and had great success.

Fast forward to May 2012. I wanted some definitive answers, as definitive as we can get with the testing. Housing at my university will accommodate me if I have a diagnosis. I have a family history of autoimmune diseases, and I'd rather know now if I have one.

A note on my family history--includes Crohn's, rheumatoid arthritis, gallbladder issues, cancer (my aunt recently passed away due to gallbladder cancer), osteoarthritis, gout, etc.

Anyway, I've been on gluten for just over two months. The first time they blood tested me, after one month, none of my tests were positive. They were tTG IGA/IGG, and gliadin IGA/IGG (I haven't a clue whether they were AGA or DGP, but my doctor alluded to the fact that they were unable to use the most up-to-date tests because of cost). The second time, my gliadin IGA and IGG were above the normal levels, and my gastroenterologist called them "weak positive." My tTG were still negative, though I think they increased some. I suspect the fact that I was gluten free for 18 months has something to do with it. None of my doctors seem to factor that in, or seem to see that even though my numbers are low, they are increasing every time I get tested.

I know the gliadin IGA/IGG doesn't specifically indicate celiac, but doesn't that indicate that something that isn't supposed to be in my bloodstream is leaking into my blood? I was reading somewhere that those elevated antibodies mean that gluten protein is getting into my blood, signaling intestinal damage.

I've also been miserable. I've had stomachaches, diarrhea, constipation, mucus in stools, bloating, horrible joint pain (in all my major joints-hips, ankles, wrists, jaw, shoulders), tingling in my fingers, muscle weakness (to the point I can't lift a 24 pack of soda....they also recently blood tested for muscle inflammation or degeneration), and fatigue. I'm scheduled for a biopsy in two weeks, and I'll know for sure. I'm also scheduled for a gallbladder sonogram because of my family history of gallbladder issues. I have a sense in my gut that this is true celiac and not gluten intolerance. Any thoughts on which it could be?

Thanks for listening to me rant. Any thoughts/comments would be appreciated.

[Skylark]

Remember that the old AGA IgA has a specificity of maybe 80% for celiac (numbers vary between studies). Having both AGA IgG and IgA is somewhat more specific. Doctors prefer the newer DGP with >95% specificity, but AGA IgA isn't as poor a test as you seem to be thinking.

Your symptoms sound progressive and very celiac. Sorry you're feeling so rotten and good luck hanging in there for the biopsy.

Your doctor is not trying to interpret increases in your TTG that are within the reference range because the reference range represents the noise in the assay. If your immune system is basically the same from one test to the next, there is still a 50% chance that the second test would be higher than the first. If you're looking at two tests, both will go up 25% of the time.

By the way, if you have a copy of your lab slip you can call and find out exactly what test was performed.

[GlutenFreeAustinite]

That is good to know...my GI doctor says the gliadin IGA/IGG only indicates gluten sensitivity not celiac. He also told me that non celiac gluten sensitive individuals can tolerate small amounts of gluten. I'm not so sure.

It's been very validating to hear that I'm not making this stuff up, or exaggerating. I feel due to the progressive nature and definite systemic problems that it is celiac. We always thought that my grandmother had it...she tested negative on the blood test in the early 1990s, but was never biopsied. She had Crohn's, ankylosing spondylitis, extremely fragile bones due to osteoporosis, IBS, etc.

[Skylark]

Your GI doctor has forgotten that AGA IgA was the major diagnostic test for celiac in the '80s, along with anti-reticulin which was developed in the '70s. I take it he's young?

[GlutenFreeAustinite]

Your GI doctor has forgotten that AGA IgA was the major diagnostic test for celiac in the '80s, along with anti-reticulin which was developed in the '70s. I take it he's young?

No, actually, the guy is probably in his mid 70s, and was actually retired but agreed to come back two days a week because he is so popular.