Very confused

Ga girl · Joined: 20 Sep 2006 Posts: 5

In Sept 06, after being sick for 2 months with a stomach issues, I had a Celiac Panel and Upper Endoscope done. At my follow up I was told by my Dr that I had a Positive Celiac Panel but the biopsy came back negative. The lab work stated that my biopsy looked like "someone who has been treated for/or the early stages of Celiac Disease." My Dr told me that she was quite sure that I had Celiac and to start a Gluten Free diet. I was also informed that I needed to have regular bloodwork done about every 6 months to check my levels. I had bloodwork done 6 months later and got a call from my Dr's PA that I still had Celiac and to continue with the diet. I had my bloodwork done in April 2007 and her PA called me and said that I still had Celiac and to continue with the gluten free diet.

Fast forward to yesterday. I scheduled to have bloodwork yesterday and saw my Dr. The last time that I had seen her was for my follow up in Sep. 2006. As she was looking at my chart she said that my antigliadin levels were elevated from my last bloodwork in April of 07. Everything else was negative. She went over my whole chart and said that she did not believe I had Celiac, even though she TOLD me I did after my follow up to my endoscope. I told her that I did not understand as the PA had called me with the results from the bloodwork and said that I had still had Celiac and to continue with the gluten free diet. My Dr told me that the PA must have not have understood what she was reading. WHAT???? I am so confused by all of this. I did call back and speak to the nurse to ask why my numbers were and she told me that my antigliadin was 9 and that my endomysial antibody was 559. I have no idea what these numbers mean and am doing my best to try to figure out why my antigliadin levels are elevated. I have a colonoscopy and bloodwork scheduled next month. Any info. that you can give me would be appreciated.

aklap · Joined: 02 Oct 2004 Posts: 8502 Location: WI, USA

Hi GA,

Oh gosh, what a mess!

I would request copies of your lab results and your biopsy results any office notes your docs have regarding these visits. Once you get those numbers, maybe we can help figure it out a bit.

Since there's no reference range [what's high, low, normal] it's hard to tell about the EMA test score, but I'm thinking 559 is NOT anywhere near normal!

The antigliadin levels can be skewed by other factor - not just gluten. This is why they have fallen out of favor. The are useful in that they can tell you if gluten might be causing problems. Did they re-run the EMA tests? Is it possible you're getting some hidden gluten?

So, how have you felt being GF? Better? Worse? The same?

It might not hurt to get a 2nd opinion. I don't understand the "You still have Celiac, stay on the diet" remark. Are they expecting for it to go away? Once a celiac always a celiac.

Here's some info on the tests: http://www.labtestsonline.org/understanding/analytes/celiac_disease/test.html
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa