Not Sure What To Do

[CarolynV]

Hi,

I just found this forum and am so glad.

I tested positive for celiac disease last Thursday after almost 4 months of strange neuological symtoms. My neurologist did every sort of neuological test he could think of and found nothing so he referred me to a very well respected rheumatologist in my area. The rheumatologist is the one who found me positive. I was shocked because I never had considered having celiac and asked her if that was the reason for all my weird symptoms (immense fatigue, muscle pain and twitching). She said that celiac could absolutely cause all my symptoms. The problem is, when I started researching celiac, it said that needed to be on a regular diet in order for the results to be accurate. About a month ago, I had started a gluten free diet which was recommended by a friend. I actually called my GP and my neurologist and asked if it was OK to do this and they both said it wouldn't hurt me. My rheumatologist knew that I was on this diet when she tested me, so she did a complete celiac panel on me. So, the positive result came back in the IgG Antiliadin which I've now found on the internet is not very specific. My IgA results were negative (which is more definitive). So, I'm not quite sure what to do. The rheumatologist was so convinced on Thursday that I had celiac disease that she said she didn't even need to see me again. She said that I just needed to stay on the diet that I'm already on. I do know that I will place a call in to her tomorrow, but I just wanted to know what you all thought. I've also read on line that a positive result for celiac disease is not only a blood test, but a biopsy. Have any of you done both? Also, have any of you seen a nutritionist?

Thanks for any thought that you have on the matter. If this is what I have, I actually consider myself lucky, since I was tested for so many other worse things.

CarolynV

[elye]

Hi, Carolyn!

You've come to the right place. Lots of knowledge and support to be found here!

I had both the blood panel and the biopsy done. If there are questions about you blood results, the biopsy may confirm celiac. However, like the blood panel, the biopsy can only rule the disease IN...it cannot rule it OUT. The GI may not see any damage, and the biopsy samples may not show any, either, but since you have 22 feet of lower intestine, areas can easily be missed.

The only truly accurate diagnostic tool for this illness is dietary response. Sounds like you may have your answer just from this.

Welcome to the board, and good luck!

[aeshlea]

I would stay on the diet if I were you. It won't hurt, and you will know for sure as soon as you accidentally eat gluten, or do a challenge. Like the above poster said, a positive result from the dietary changes is really the true indication of what your body is trying to tell you. I have not seen a nutritionist because after I read up on what I could and could not eat, it was fairly easy. Not easy at first finding the things I could eat, but you get use to reading labels and before you know it you will be a pro at scanning for gluten ingredients. If seeing a nutritionist would make you feel better though, go for it.