The Irony

[Marilyn R]

This evening it dawned on me how ironic it is that for months and months I questioned doctors about what was wrong and could come up with nothing (except osteopenia, hypoparathyroidism and IBS). All of my doctors would tell me "all of your blood tests are perfectly normal". Maybe you should see a psychiatrist. (So I did, without any relief.)

Now that I've been gluten-free a year, my blood tests come back bizarre. I had a high calcium level which made my gastroenterologist decide that my parathyroidectomy was a failure. I had a blood test that showed that I had Mixed Connective Tissue Disease, and got referred to a rheumatologist. I have none of the symptoms and don't have MCTD. And my calcium levels are normal now.

Next I was told, based on a blood test, that I most likely have sarcidosis. I didn't make an appointment with a pulmonoligist because I don't have any symptoms, despite the recommendation from my GP. But when I saw a neurologist in the same practice, she encouraged me to see a lung specialist because of those blood tests. I told her that I sometimes get wierd lab results, elaborated, and she looked at me like I had a tree growing out of my head. Then she asked in a condescending tone if I would like to have that test repeated. I agreed.

Well yippee skippy. I picked up a copy of my lab results yesterday and I am within limits of that obscure blood draw.

The neurologist also tried to talk me into a nerve biopsy. She told me I have permanent and irreversable nerve and muscle damage based on the EMG and merve test. I told her that pre gluten-free diet my pain from neuropathy was an 8, now it's a 2, sometimes one, so I couldn't see the reason for a biopsy. She said it would help her diagnose what disease I have, especially since my tests for celiac disease were inconclusive.

Nobody ran a celiac panel on me when I was sicker than a dog and just wanted to lay down and die. Now I'm getting diagnosed with everything but I'm not sick a day in my life unless I get glutened. That's the irony of it all.

So, I'm interested if there are other similar stories. And anyone new to this, please don't freak out if you have wierd blood test results. It seems like they come and go.

[rdunbar]

I heard about a new lab that is doing much more comprehensive testing.

It's called Cyrex laboritories. aside from testimg for the IgG & IgA antibodies, they test for

wheat germ agglutinin,

gliadin 15, 17, & 33,

glutenin,

gluteomorphin,

prodynorphin,

transglutaminase,

glutamic acid.

the lack of the full array of tests accounts for false negatives, as an individual may have just a few of the above, and not nessisarily the IgG & IgA which they are looking for exclusively.

when i heard about this, I finally had to give testing some credit!!

try to find a practicioner that can use this lab.