Week 7: G-Free Recap

The week didn’t start out terribly bad— I knew I was still recovering from a cold and each day I seemed a little better. I was still feeling some faint heart palpitations, particularly in the afternoons (must be when I’m getting tired or something), but at least the sneezing and coughing was going away. I took my newly prescribed Vitamin D (50,000 IUs) on Sunday, 3 days after the first dose.

I continued to increase my time on the treadmill-- two walks a day, plus a 20 minute Pilates workout to rebuild my strength, and 10 minutes of weight bearing exercises using a Pilates machine. I was still getting heart palpitations several minutes into my treadmill walks, and began wondering which would be better: shorter time on the treadmill but a faster pace? Or a longer time with a slower pace? Which method would be more beneficial to strengthening my heart (more about this later)?

Additionally, I was still feeling some congestion or fullness in my upper left chest that sometimes spread into the left side of my neck and my left armpit. I wondered again—why is it always my left side? Still no answers.

I took my third prescribed Vitamin D dose on Wednesday, two days after my last dose because I am supposed to take it twice a week. I figured Wednesdays and Sundays were just as good days as any, right? Within a couple hours of taking the Vitamin D, however, I began to feel nauseous. What had started out as a pretty good day went downhill quite rapidly. Within a couple more hours, a few random hives started popping up here and there. I made no connection to the vitamin, yet, because I had no reaction to it last week.

My back started aching on the same day, and I was beginning to feel flu-like. The last two times I experienced nausea and a back ache, I had a kidney infection. AGAIN??? I didn’t sleep a wink the entire night, and by the next day, I was even more nauseous, couldn’t eat, and for the first time since going gluten-free, felt distended and constipated. I tried my treadmill routine in the morning, but by the time I finished I felt like I was about to go into shock—cold and clammy, lightheaded and queasy. My heart was feeling very weak, and whenever I laid down to rest, I felt like I could very easily stop breathing-- my heart would jump back into action again.... very weird, and I lack the literary skills to put it into proper words.

I managed to get in to see my doctor that afternoon —the only medical professional I’ve seen all this time that I actually trust. My back pain was not in the right place to be a kidney concern, so that was good news to me. He offered a beta blocker for the palpitations, which I turned down because I don’t want anything messing with my heart as it is —and he offered a regular prescription of clonazepam for anxiety and to help me rest (which I also declined—for now). He decided that I may be reacting to the Vitamin D, in which side effects listed everything I was going through. Stop the vitamin for a week, try it again, and see what happens. Sounded like a plan to me!

I continued to develop a couple of random hives that night, and my stomach began to hurt just as if I had been gluten-ized!! And yet, I hadn’t eaten anything that I was aware of that could have caused a gluten reaction!  I wondered if the vitamin had gluten, but I had been assured by the pharmacist that it did not.

The next day, my stomach was very sore. I felt like I had been run over by a truck —the last time I felt that bad was when I first decided to go gluten-free back in December and see if it helped. I still felt queasy, but not enough to give up my treadmill walks —getting my heart stronger is my first priority.

My doctor had suggested a target heart rate of around 160, and so I walked 30 minutes, twice a day, for the rest of the week, keeping my heart rate at or below (and sometimes a little above) that target heart rate. Following that pattern for the rest of the week all but eliminated the heart palpitations. They gradually stopped happening during my walks, and have hardly happened since then at all!

The only drawback to the two 30-minute walks is something new for me: sore hips —whether it is related to my osteopenia, I don’t know —because my back has been very sore, and my injured left ring finger decided to flare up again also —but, I don’t think it is related —at least I hope not. I think my hip flexors just need to get used to walking for an hour a day.

My new question: Did I react to the Vitamin D because there was only two days between the last dose (and three days between the first two)? In other words, should I wait three days between each Vitamin D dose?  Or still go three days and two days?

Week 6 Recap: Missing the Hurdle

Just when I thought I was over one hurdle, the next one came up and I missed it completely. Two days into the new week, I caught a cold and my feeling good days suddenly vanished and turned into feeling sick and miserable days.

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.