Friday, October 2, 2009

My Diagnosis

It’s been over a year since I heard the term “Celiac.” A coworker was diagnosed with gluten intolerance and suggested that I see her doctor. I hoped that he would be able to help my myriad of symptoms, but knew that if he said “Celiac” that my life would be over.

As with most Celiacs, the road to diagnosis is never straightforward. On my first visit he said “no gluten.” And drew some blood to test for the “Celiac gene.” This gene does not mean that you have Celiac, but 95 percent of Celiacs have the gene, so it’s a pretty good indicator. I stopped eating gluten. Started feeling better. Blood test came back negative for the gene. Now, I’ve played over what exactly the doctor told me at that point. I’m not sure what he said, but I'm sure it wasn't what I heard (and did) which was this: Don’t eat gluten…most of the time. In a couple months when Thanksgiving and Christmas comes, a little gluten won’t hurt you.

So, by the time the fourth family Christmas (yep. My first Christmas as a married lady involved 4 family Christmases) rolled around, I had thrown caution to the wind and was eating pretty much every warm, sweet, gluten-y thing I could put in my mouth.

January. Back at the doctor with stomach pain that won’t go away. He takes one look at my distended abdomen and says “what have you been eating?” Ummm… bagels every day this week? Right. I was presenting with classic celiac symptoms. Also, my blood work showed some of the malabsorption issues and the deficiencies that had begun to correct themselves were getting worse. “No gluten.” That was my answer. I was one of the 5 percent. (No, I did not have a small bowel biopsy done. It is the gold standard of Celiac disease testing, but the blood work and gluten test were enough to convince my doctor, so that’s good enough for me. I also had an antibody test, which showed gluten antibodies.)

Now, one might assume that I went home, purged my life of gluten and lived happily ever after… Well, I never claimed to be the brightest crayon in the box, so that night I went out and ate ½ a large Plank’s pizza. I was so sick for days afterward that from that day on, I have not purposely eaten gluten. Anyone who has observed a gluten free lifestyle knows, however, that purpose is only part of the battle. I’m still figuring out the gluten free life; still training my husband not to poison me with his crumbs; still explaining that no, a “little bit” will actually hurt me. That is what I want to share here.

I have learned so much from the seasoned Celiacs in the web community that I want to share my own challenges, goof ups, victories, and stories. And so I give you: A Gluten for Punishment. I hope you enjoy!

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