Monday, April 21, 2008

Celiac Journey: Diagnosis

Well the waiting for test results is over (for now). Last Monday (4/14) we were at Mayo for an apt. with Dr. Grothe, another blood draw, and an apt. with a dietitian that specializes in Celiac education. Then we went home to wait for a week. I guess it was good that it was a VERY busy week (I spend much of the weekend sleeping to recover.)

Friday night Dr. Grothe called to discuss the test results (I had called earlier that day.)

The end result is that we have a diagnosis of "Latent Celiac." In simple terms this refers to someone that has positive blood tests, but a negative biopsy for Celiac (with or without symptoms). This may be because the disease is indeed inactive, but more likely because we were testing earlier enough that it was difficult to find damage in the intestines.

The plan now is to follow a completely gluten-free diet for 6 months and then to do another complete celiac panel, and if the panel is normal, or closer to normal, after eating a gluten-free diet, then that should confirm a celiac diagnosis. Of course we'll also be watching Nessa's symptoms throughout the six months.

The doctor has advised that we also remove lactose from her diet for at least the first month so that we aren't confused about what could be causing some of the symptoms. And most Celiacs are lactose intolerant at least initially (some remain so). So, in addition to no wheat, barely (malt) or rye, we also have to avoid most dairy products or use lactose free versions (and there are more options here now too).

We have learned a lot already, and have many more resources yet to explore. We are especially blessed with a supportive daycare with teachers that care enough to be following these guidelines above and beyond what I even expected from them (and I already knew they were great). And of course we know all of you will understand when we visit (or take forever to order at a restaurant when out together) -- 100% gluten-free means totally 100% -- including cross contamination -- from crumbs to things needing to be cooked on separate surfaces, etc.

Thank you all so much for all of your thoughts, prayers and support.

1 comment:

Christie CC said...


I know it isn't exactly "good" news, but I'm at least glad for you that you have a plan for the next 6 months.

I wish you a smooth transition and lots of support from the people IRL.

Nessa's so lucky to have parents like you!