Tuesday, August 24, 2010

genetic test for Celiac: I'm HLA DQ8 Heterozygous

Quick update- the results of the genetic test for Celiac came in today. I'm heterozygous for HLA DQ8. She only ran the test for DQ2 and DQ8. My understanding is that this indicates a "moderate" risk for Celiac, but isn't really indicative one way or the other.

Monday, August 16, 2010

update: "Mild villous blunting"

Today marks 6 weeks post-biopsy, and 6 weeks on the gluten-free diet. On the bright side, I have seen some gradual improvement in GI symptoms- the rumbling, gas & bloating that I used to get after most meals seems almost totally gone. Additionally, I'm starting to have stretches where rather than having 3-5 bowel movements daily (my previous "normal"), I'll have only a single BM/day for several days in a row. I still have days with 3-4 BMs, but they're getting rarer.

I had a follow-up visit with the gastroenterologist this afternoon. Based on the GI improvement mentioned above, she feels that "it's likely you have (Celiac) Sprue", even though the biopsy labwork was unable to confirm it. So she wants me to stay the course on the GF-diet and check back with her in about 3 months. She also ordered the Celiac genetic test, for which I had blood drawn today.

On my way out I asked for copies of my biopsy results. You can view them here. Sitting in the parking lot reading them over I found this interesting phrase: "Mild villous blunting"! Isn't this pretty much indicative of Celiac? Does that mean she visually observed blunting during the procedure? Is that even possible? Why didn't she mention this before? Why doesn't the pathologist's report seem to agree with this?  I wish I had discovered this during the appointment rather than afterwards in the parking lot. This was pretty surprising, since she told me the biopsy had been totally normal. I'm very interested in hearing from my readers what the significance of "mild villous blunting" might be.

So in addition to the GI improvement I mentioned, I've also seen some occasional improvement in my dexterity. This will last a day or so, then revert back to feeling like I'm typing with mittens on. Perhaps related to this, my neurologist also remarked that my left-side reflexes have recently improved (they were a bit exagerated previously).

Sadly though, I've had no improvement in fatigue; in fact, it seems a lot worse than before I started the diet. I spent most of last week sitting on the couch staring at the wall. I've been totally unable to work the past week or so. My employer has so far been understanding, but I've burned through nearly all of my PTO at this point. It's a tiny company, and I doubt they can afford to keep me on for much longer in this state of non-productivity.

I'm really quite freaked out about being unable to work. So I made an appointment with a psychologist that specializes in chronic fatigue/pain issues. I didn't have a lot of success with this kind of therapy in the past, but I'm not sure what else to do. I'll report back on that in another posting.

Thanks for reading.