Just Diagnosed (I Think)

[heather806]

Hello all, I've been googling info about Celiac since I received my blood test results today. My doc is on vacation and is supposed to call me on Mon to advise me about how to proceed, but the test results were:

transglutaminase IGA: 90 (nurse said the range is 0-3) !!

endomysial IGA: positive (she didn't give me a number)

There are mentions of biopsies to confirm...is there any sense in doing that given these results? I would like to avoid it of course.

I am happy to have an answer to my 4+ year-long medical mystery (low nutrients, especially calcium and iron, to the point of hospitalization for a week in 08 bc of low calcium and magnesium, and receiving iron infusions here and there). Several docs over the years have asked if I have gastro symptoms but I would say "no" and they wouldn't pursue anything like Celiac. I don't feel like I have gastro symptoms and my heart goes out to all of you who do have them!

Thanks for any input...a little overwhelmed by all the info online tonight but nice to find a forum!

[MitziG]

Well, with two very positive blood tests (and EMA is specific to celiac) you definitely have it. Your dr may be old school and insist on a biopsy before he gives you an official dx however, which is unfortunate.

Biopsies used to be considered "the gold standard" for dx celiac, but now that there are such specific blood tests, they aren't really necessary most of the time.

However, there is value in having one done to asess the level of damage done so far. Just beware that if you have minimal damage, or an inexperienced GI, you may be told your biopsy is negative for celiac.

Don't believe that. You have it. Once the biopsy is done, go gluten free. Your life will change for the better!

[Lisa]

If you do have Celiac or a gluten intolerance, a biopsy would not be a bad thing.

ANY history of digestive issues, should be endoscoped. If for nothing else, but to look for more serious issues.

[VydorScope]

Well,

I would chat with your doc about the scope, you may or may not want to do it. The key thing is if you want to do it, you need to do it now, before you go gluten free. Once you start the diet the scope will be less and less likely to yield a positive dx.

But as the others said, regardless of a scope, with those numbers you need to go gluten free for life. So if you decide you want the scope, wait a till after the scope, otherwise start now.

When does your doc get back from vacation?

[heather806]

My doctor gets back from vacation on Monday. This is just my primary doctor. I was seeing him to get my calcium, iron, etc blood tests done just to check my levels. I take massive amounts of calicum, vitamin d, b vitamins, magnesium every day just to try to compensate for the malabsorption.

My best friend who has been trying gluten-free for a couple of months to help with her endometriosis and fertility issues suggested I get the tests done after reading how Celiac can cause the vitamin deficiencies I've been dealing with for years. So it wasn't even a doctor who suggested the test! My doc kind of poo-poo'ed the idea but said sure, we'll test for it...

I suppose he'll refer me to a gastro.

My hope is that with a gluten-free diet I can eventually stop taking all these massive vitamin doses and I won't have to worry about my levels so much.