Week 10 Recap: Gluten Reactions?

People have warned me about reactions to gluten once you have been g-free for any length of time. I have been told that each accidental exposure seems to result in a different or worse reaction than before. If what I experienced last week was a result of an accidental exposure, I think I ran the gamut of every sick feeling I’ve ever had -- and all in less than five days.

The week started out great, well into the 90th-percentile for me. I continued my “physical therapy” with two 30-minute treadmill walks, upped my Pilates time to 30 minutes, and upped my weight-bearing exercises to 15 minutes. My plan was to do continue with a six-day exercise program.

I also decided that I didn’t want to continue using clonazepam to help me sleep anymore. I have never liked the idea of taking drugs that do anything to my brain, and I don't like the idea of having to be “weaned” off of medications, especially ones that might require additional medications to counter the side effects of weaning. Well, the idea was a good one but I ended up taking lorazepam instead (Ativan). It was a tiny dose and I figured it would be a good way to slow down. It worked— I slept through the entire night for the first time I can remember in a long time!

But by Tuesday I started having a lot of what I call “subclavian” pain (just because it is in the general area of the subclavian vein --below my shoulder). It was so pronounced I gave it a 5.5 on the pain scale: moderate pain. It was not the first time I have experienced pain or congestion in that same area, but it seemed pretty strong this time and the pain radiated from the left subclavian area toward my left armpit as well. It lasted off and on all day and I ended up taking lorazepam to help me sleep again.

By Wednesday, I wasn’t feeling very good. I was feeling flu-like and couldn’t seem to keep my heart rate down during my treadmill walks. At the same time I developed a migraine headache on the right side of my head that steadily worsened throughout the day. By bedtime I was feeling weak and shaky and my insides were “trembling” again. I was so uncomfortable I resorted to lorazepam again to help me sleep because it had worked so well the previous two nights. It didn’t occur to me that the lorazepam might contain gluten.

The next day I continued to have trouble keeping my heart rate down during my treadmill walk and ended up reducing the speed and held on to the rails when I felt too winded. I also continued to battle the right-sided migraine as well as left chest pain that radiated upward into that left shoulder/subclavian area. The only good news was that my headache went away when I did my treadmill walks and suspected it was due to the increase in oxygen in my body. I determined not to take any more medications to help me sleep, and took Advil to dull the headache, instead.

As you can imagine, I didn’t sleep that night, and had to put up with internal muscle trembling which seemed to start in my esophagus at bedtime and worked its way all the way through to my intestines by morning. At least the headache went away! That Friday was the day I noticed the involuntary gasps which have happened several times over the past week or two, sometimes during the day, mostly at night, and for no apparent reason. The kind of involuntary gasps you experience while crying. Sometimes just a single one, sometimes 2 or 3 in quick succession; sometimes in the day time, but mostly at night. Chalked it up to just another one of those things, but wondered if it wasn’t somehow connected to everything else I was experiencing that week!!

Throughout most of Friday I was feeling very weak. Once again, I had a hard time keeping my heart rate down during the treadmill walk, sometimes exceeding 95% of my heart rate by several beats. I didn’t feel hungry, but forced myself to eat and ended up with a bad case of reflux all afternoon in spite of the twice daily omeprazole (Prilosec). It felt like the reflux was pressing against my lungs and chest, making my chest feet very full.

To ease the reflux and the bloating I was feeling, I took Mylanta twice that evening, but it didn’t do much good. I hardly slept again that night, and I felt intestinal trembling all night long, clear into dawn again—it was like I had a motor running that I couldn’t turn off.  (If you ever want to know how this trembling feels, stand in the shower and let the spray beat down on your chest.  That is how it feels, but from the inside.)

I spent most of Saturday morning feeling “weird and weak” like I either had low blood-sugar or low blood-pressure. My stomach felt hungry, but my brain didn’t. I weighed myself for the first time in I-don’t-know-how-many months (my only weight came from doctors' offices) and was at 108 lbs. That is probably the lowest I have been in 5 years, since the DH (dermatitis herpetiformis) first showed up. Though 108 is actually a good weight for me (between 105 and 110 is generally when I feel my best-- I am a small person), I am not trying to lose weight. If I was trying to lose weight and felt good, I wouldn’t care, but I don’t feel good, so I’m not sure that it’s such a good thing.

It took another night before all these weird symptoms even began to subside. I decided to skip the sixth day with Pilates and weight training and even came close to giving up the treadmill for that day, but somehow I managed to get it done, and that made me happy. My exercise totals for the week: 18.85 miles on the treadmill, 130 minutes with Pilates and 60 minutes in weight-training.

Overall, it was a rough week and I don’t want a repeat of this week any time soon— in fact, never again would be nice.

I believe I was having a reaction to gluten, though I do not know the source for sure. I know that I am very strict with my diet, and so I suspect it may be the lorazepam which was prescribed for me during one ER visit to help me get over the “hurdles.” Regardless, I won’t be taking it again!