Before Diagnosis

[Viola 1]

I hadn't even heard of it until I came home one day and there was a message on my answering machine with my GI giving me my results and saying I was positive for celiac disease. I had to replay the message a few times to figure out what the heck was he saying and how do you spell it????

He gave you the results on a answering machine!!! Wow, our office phones and asks us to come and and see the doctor with something like that!

[Canadian Karen]

He gave you the results on a answering machine!!! Wow, our office phones and asks us to come and and see the doctor with something like that!

Yep, and to boot it was on Christmas Eve!!!! I guess he didn't want me getting all glutened up through Christmas! LOL!

Karen

[mouse]

The sum total I knew was zip. I had never heard of Celiac and did not even know what gluten was. My doctor told me to go on the internet and learn as he did not think a nutritionist would know much either. And he knew nothing about how the diet works.

[Jestgar]

I had never heard the words gluten or Celiac. I had a vague notion that some people avoided wheat to reduce inflammation for RA.

[celiacgirls]

My grandmother had celiac disease only she called it sprue. I knew she couldn't have any wheat flour. She was trying to do this diet from a very small town beginning in the 60's. We always had forgotten cookies (meringue), rice krispy treats, and oatmeal cookies at her house. She had some strange flour around, too, and she ate rice and corn chex. Now I know she wasn't totally gluten-free but she was doing the best she could without the internet for information.

I never connected her problem with me until my youngest daughter had D when I gave her wheat and the doctor mentioned a rare disease where she would have to be on a very strict diet and avoid all traces of gluten. At that point, I was pretty sure it must be my daughter's problem because it seemed like too big of a coincidence that my grandmother had it and my daughter had signs of it. It took 7 years to be fully convinced that it was her problem because her blood tests were always negative but we did try the diet off and on over the years.

We still haven't really been diagnosed other than by Enterolab but we are very strictly gluten-free.

[kbtoyssni]

I had a friend mention it a few years pre-diagnosis so I knew what it was, but that's it. I'm lucky she mentioned it, though. I diagnosed myself through an elimination diet and probably would have thought I only had a wheat problem if she hadn't. I'm pretty sure I didn't even know what tortillas were made of. So when my server says "we have wheat tortillas and regular tortillas" I cut them a little slack.

[gabby]

Count me in as someone who had never even heard of Celiac disease. After decades of being sick and nobody being able to figure out what was wrong with me, I was in the hospital for a battery of unrelated tests and a doctor discovered the celiac by accident. Sort of like: by the way, you know you have celiac disease.

I believe it saved my life.