Wednesday, September 24, 2008

No Celiac Disease For Me ...

It just figures.

Right when I'd come around to thinking that celiac disease could be a blessing of a diagnosis if it fixed all my problems, or even most, I find out that the tests the rheumatologist ran last week came back normal.

I'm hoping to get a copy of the results tomorrow when I see my internist, and I'll let you know exactly what they were then. The nurse I spoke to a little while ago said the tests run were an
IgG and an IgM (I think -- it might have been an IgA) as well as
the anti-tissue transglutaminase antibody (tTG) and anti-endomysial.

So I could be wrong, but I think that pretty well rules out celiac disease and certainly my rheumy felt it ruled out the need for biopsies of my small intestine.

It's just kind of funny because once I got over the hassle it would be to change the way we cook and eat in our house -- totally worth it if it would help, but a hassle nonetheless -- I realized that of all the possible diagnoses that have been thrown around for me, this would be one of the better ones because it wouldn't require medication or surgery, just diligence on my part. And I'm assuming that once I realized how much better I felt on a gluten-free diet, it would reinforce my diligence. (But, boy, I sure would have missed my husband's homemade challah ...)

I'd done some reading online about it, talked to dietician friend Joan whose somewhat an expert on celiac disease and gluten-free diets, discovered a list of local restaurants with gluten-free menus (or at least meals). And it was all starting to sound not so incredibly bad. Especially when Joan told me that if it was celiac disease, I would start to notice an improvement within days. That definitely sounded good to me!

So, back to the drawing board.

I think I need to follow up with my immunologist, which I've put off doing for a few months now. I'm waiting to hear back what the rheumatologist wants to do next since we left things hanging on these test results.

Man, I sure wish I didn't always have to be so complicated all the time!!! :)


SharonMV said...

Hi Aviva,
Did you ever finish all the tests with the immunologist? Some people with PIDs can have Celiac even with negative blood tests. I think especially those with low IGA.


Anonymous said...

I might be biased being Celiac myself and all, but you might try going off gluten anyway and see what happens. Two weeks should be enough time for you to notice a difference

Aviva said...

hey Sharon,

That's actually on my list of top priorities. I need to follow up with the immunologist. I plan to call and make an appontment tomorrow!

Thanks for the reminder!!