I still cannot help but wonder about my diagnosis because it all seems so strange. I will fail the blood tests for celiac, but have the Dermatitis Herpetiformis associated with the disease. Though it is true that my digestive system feels better being off gluten, couldn’t that also be true of most people who eliminate gluten from their diets?
Additionally, I thought perhaps we had caught the celiac disease early on, thinking maybe there just wasn’t enough damage done to my intestines to show up anywhere. But on the other hand, I have osteopenia—a thinning of the bones. And though my cholesterol numbers and blood pressure seem fine (bp 104/78 at my last doctor visit), my heart has an ejection fraction (EF) of 55%, which is borderline low—indicating some kind of previous damage.
When I questioned the doctor about the damage done to my heart, he suggested that it may be a result of myocarditis or cardiomyopathy, yet he sees my EF as a good sign because it may well be on its way up, as opposed to a couple months ago when I was at my sickest. He also suggested that with continued exercise and a gluten-free diet, my EF should rise to normal again, though it may take some time.
Was my barely-noticeable celiac so bad that it could do this kind of damage to my heart?
It is clear that whatever is making me ill is not finished— my immune system seems greatly compromised. I no sooner feel better then I feel sick again! The good news: last week was the longest stretch of good days I have had in three months. The bad news: what if it is not celiac at all? What if we are missing the mark and all this time is going by and I am getting worse? My instinct says we are on the right track with the celiac, but my instinct also tells me that we don’t have enough of the pieces to finish the puzzle.
Something— whether it is celiac-related or not— is taxing my body to no end. My bones, my heart, my kidneys… So many times I have been discouraged because it seems like I can’t work on the puzzle because I can’t see the whole picture. I often feel like I won’t ever completely heal until all the puzzle pieces are there and I can see the picture. And then I found this quote yesterday by Tyler Fick, a beautiful young woman who lost her battle with Cystic Fibrosis at the age of 22:
“Do not accept failure in your life. When life gets hard, get hard on life. Never feel sorry for yourself” (http://www.tylerfick.org/).
Okay life, watch out! I may be down, but I’m not out for the count yet! Let's keep working on this puzzle so that I can begin to heal completely.
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2 comments:
Oh, I admire you for having this blog and helping people! I never dreamnt I would ever be as ill as I am in my life! I thought that after I was diagnosed with celiacs that I would get better after being strictly GF!! I now have addisons and feel that complete wellness seems like a far off dream!
I understand where you are coming from, Kimber! Addison's is closely related to celiac. I have often wondered if that isn't in my future somewhere as well. You will get there. I actually felt worse for a while after going gluten-free, and I have heard from many celiacs that it gets worse before it gets better. Hang in there and don't give up!
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