Week 9 Recap: Weird Things

Week 9 was actually a good week—I didn’t feel completely healed by any means, but definitely on my way. Every day felt somewhere in the 90% range for me. What could make it better? More sleep, more energy, and more stamina—I think they are all related, aren’t they?

Some Weird things I experienced this past week:

• Random hives inside my elbows and knees that seemed to disappear as quickly as they appeared, and often only on the left side (there is that left side again!!).  
• Feeling weak, fluttery, and “weird” come about 8:30 or 9 in the evenings. I suspect it may have something to do with low blood sugar because that is the longest time of day I go without eating (don’t eat after dinner anymore). I ended up taking clonazepam every night that week when I went to bed to help me get past these odd, fluttery sensations. 
• I usually feel fine in motion, but when I have to stand still for any length of time (whether in the check-out line at the store, or cooking at the stove), I begin to feel queasy, light-headed, and like I’d really like to sit down. Maybe it is a blood pressure thing? I don’t know.

And yet another really weird thing that happened this past week happened on Monday afternoon. I experienced some sudden, stabbing pain in left shoulder (subclavian) area which made me a little nauseous and sweaty for a few seconds. I checked my food/symptom journal and found it was the first time I have felt pain or congestion in that area in about two weeks. It had been so long, I had almost forgotten about it!! That oh-so-common left shoulder/subclavian pain and congestion had disappeared completely during the time I was off of ergocalciferol (Vitamin D) and all forms of Vitamin D, about 10 days. In fact, now that I think of it, that is the only time it disappeared.—but I’m not saying they’re related. Yet, why did it go away, and why did it return so suddenly (the day after I restarted the ergocalciferol)?

Could the left shoulder/subclavian pain have anything to do with ordinary Vitamin D? Even before the ergocalciferol prescription, I was still taking Vitamin D3, 1000 IUs/day and still feeling that congestion. Maybe for some odd reason my body does not react well to any Vitamin D.  Either way, it is turning more into pain than congestion, these days.

Once I restarted the ergocalciferol, I didn’t notice any other adverse affects from the 50,000 IUs of Vitamin D like I had previously, so besides the pain in the left subclavian area, I suppose that is good news. If it bothers me, my doctor has instructed to reduce the dose to once a week, rather than twice a week. Let’s hope the left shoulder/subclavian congestion and pain doesn’t have anything to do with it.  On the other hand, if there is a link then I should be able to avoid that pain by stopping the D vitamins-- just have to get some more sunshine, I guess. 

Maybe I should invest in a tanning bed.  :)

I didn’t experience so much back pain this week like I did with the previous week, but I did wake up with head and neck pain (always the left side!) on five different mornings which is something I’d really like to take care of, but don’t know how—it doesn’t seem to be related to my pillow because I have also experienced it during the middle of the day, far from my pillow.

I continued my “physical therapy” all throughout the week: two 30-minute treadmill walks a day, increasing in mileage by small degrees every day. The photo here shows the exact model treadmill that I own, and it has probably saved my life more than once! But this week I still experienced that left shoulder/subclavian pain and congestion through at least one of the treadmill walks every day…. Regardless, I walked 18.39 miles this last week on that treadmill.

The other two parts of my “physical therapy” include strengthening my core muscles 20 minutes a day with Pilates (using a resistance band and the “wheel” as pictured here-- that's not me with the band), in addition to using the Pilates Power Gym for 10 minutes a day for weight-bearing exercises to strengthen my arms and legs.

This is the exact model of the Pilates Power Gym I purchased about 18 months ago when I knew I was slacking on exercise and wanted to get back into shape again. We used to keep it in front of the TV so that all of us could use it while watching TV.  It ended up being used mostly as an ottoman or footrest, so now it has been relegated to my room where I use it six days a week.

So Week 9 not only included 18.39 miles on the treadmill, but also 120 minutes with Pilates, and 90 minutes on the Pilates Power Gym. I’m not feeling any exercise highs or anything like that because it is hard work-- it is not fun.  For me, it is simply therapy. My goal is to get strong enough so that I can feel “normal” again— so that I can increase my strength and and gain some energy in the process. I hope it works!

Week 8 Recap: Nice Feelings

Though the week started off with some residual back pain, it wasn’t too bad a week. In fact, I found a name for one of the mysterious “symptoms” I’d been having off and on through most of my life: silent reflux (as explained in a previous post).

For four days I couldn’t figure out why I felt like reflux was going up into my neck and attaching itself to my voice box. I was also salivating more, and developed a post-nasal drip without any apparent reason. Someone in one of my celiac support groups mentioned that she had “silent reflux” and when I looked it up, there were all my symptoms!

Well, now that I understood what was bothering me, I tried to look back at what I had eaten during the past four days—because my diet was mostly a GERD diet anyway: no fatty/fried foods; no sugary foods; no chocolate; no caffeine; no acidic foods; no tight clothing; no laying down after eating, etc. The only thing I could find in my food journal (that’s right, I have learned to keep one) were about 3 or 4 Kettle chips (g-free, of course, and low-fat) every day during that time.

Obviously, my body wasn’t healed enough to handle those chips, yet! So I did the reasonable thing, and stopped eating the chips… I also learned that I should be taking the omegprazole (Prilosec), and so started that regimen up again during the middle of the week. Once I started the Prilosec, I have to say, my days began to improve: maybe it was coincidence, maybe not; maybe it was because I simply wasn't eating those chips-- even though they were in very small amounts.

Also during the week, I continued my exercise regimen of two 30-minute treadmill walks (six days a week); a 20-minute Pilates workout (five days a week); and 10 minutes of weight bearing exercises (using a Pilates machine, five days a week).

Each 30 minute treadmill walk started out with a 5-minute warm-up walk and ended with a 5-minute cool-down walk, and for those 20 minutes in between I tried to keep my heart rate as near my target heart rate (as suggested by my doctor) as possible. I started out the week walking 2.744 miles in a day, and ended the week walking 3.003 miles in a day. That is 17.35 miles total (of course, this does not count the daily run-around and errands throughout the day); 100 minutes of Pilates; and 50 minutes of weight-bearing exercises.  So I feel this week was very successful in strengthening my heart and my core muscles. The best part: almost no heart palpitations this week, and that is a great feeling!!

Also, this week marked the beginning of a new class which I must take or my financial aid will be revoked. I was supposed to take two classes this time, but because of my health, I postponed that double-up (my final two classes) until the next term. I have been lucky enough to keep my GPA high (3.98)—which may be as high as I can get it, thanks to one A- a few years ago. Amazing how one little A- can affect your GPA. Regardless, I will be graduating summa cum laude, and that is a nice feeling.

The only drawback to this week was that I had to resort to clonazepam almost every night to help me sleep through the bouts of silent reflux, or symptoms that feel like hypoglycemia. Yet, all in all, by the end of the week, my days were very good—and back in the 90% range, which is a very good feeling.

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 3: Recap

I would not be honest if I said that since I have been gluten-free, it has been smooth sailing.  In fact, it has been quite the contrary.  After the holidays, and since my last recap, I can honestly say that to the best of my knowledge, I have been 100% gluten-free.  It was only until I made absolutely sure that everything I put in my mouth was g-free, that I could even begin to recover.

Early on, however, I continued to feel nauseous from time to time, feeling some chest congestion and tightness and daily headaches.  I still did not know the results of my blood tests (tTG) or even what my cholesterol numbers were. Was this nausea and general malaise part of celiac disease?

At the same time, I was feeling the symptoms of another kidney infection caming on-- including the same back pain on the same left side. My skin was tingling and flushing again, and it seemed like some of the symptoms that sent me to the ER last October were returning. I couldn't shake the feeling that I was coming down with something. I was feeling flu-like again. Worse, I was beginning to doubt my original self-diagnosis of celiac disease. What else could it be??  I did more research, wondering just how much time would need to go by before I would feel the benefits of being g-free.

I found that:

"Greater than 90% of those with celiac disease have improvement in symptoms within two weeks of starting a gluten-free diet (CeliacDisease.net)"

So I determined to give it more time. After all, if celiac was present in my body all these years, it was certainly going to take some time to heal. Digging around on the internet a little more, I found a chart on Celiac.com in which 19 members posted how long it took for their symptoms began to subside. I have borrowed that chart and posted it here.  Clearly it is not a scientific poll in the annals of the medical community but it represents that recovering from celiac complications does take time.

I finally called the clinic to find out the results of my blood tests. The tTG came back as less than 1.2, while the standard for having celiac is a minimum of 4. This was discouraging news indeed, because if I didn't have celiac, what did I have?? On the other hand, my cholesterol was at 162 and all numbers within that score were healthy.


Needless to say, this was getting very frustrating for me. Did this mean I had GERD after all? Then why is it that it didn't seem to matter what I ate, no matter how bland? It didn't matter what I ate or when I ate it-- if I ate it, I felt bad. All I knew was that it had to be food related.

Doubting my own diagnosis of CD, I resolved to go back to eating gluten-- after all, if the tTG was negative (normal), what did it matter? I must not have CD after all.

I ate a roll.

I figured that in order to rule out celiac disease, I would simply have to incorporate gluten into my diet again.

It was not a good time. It wasn't long before stomach hurt-- the same familiar "gluten stomach ache" I had experienced before. I was so frustrated. I couldn't do anything-- I couldn't clean the house, I couldn't cook, I couldn't take the kids to their appointments during the day, I couldn't do my homework, and it was all I could do to just get out of bed.

Week 3 was a difficult week, but not as difficult as the week to come...

Going Gluten-Free

Saturday morning, I woke up and fixed myself a breakfast that I thought would go down well. I have been having pretty regular stomach pain and indigestion for months, but only in the past two months had it worsened considerably. I even ended up in the ER, thinking I was having a heart attack, which I couldn't comprehend since I didn't really have the risk factors.

Two months ago, in a drastic attempt to find out what was wrong with me (after my little stint in the ER), I started drinking only water, stopped eating sugar and processed foods, and almost all meat (except for small portions of white chicken meat, no skin). I also stopped eating anything fried, and stopped eating fatty foods, and stopped taking all OTC medicines and vitamin supplements. On top of that, I started monitoring everything I ate, and kept track in a food/symptom journal. I ate foods that were supposed to reduce heartburn and acid reflux.

But the stomach pains never really went away, and I had a low-grade fever almost every day. My back was also beginning to bother me, but I thought it was just poor posture hunched over the computer all day. Three weeks after the ER, still on a very strict diet, I became very ill with a kidney infection. I took cipro antibiotics for five days, and felt quite a bit better.

But still, the stomach pains never really went away. Some days were good days and some days were bad days, and I never knew what kind of day I would have from one day to the next. I couldn't plan anything, and since it was peak holiday season, it was a very difficult time.

So what did I have for breakfast three days ago that sent me on this new journey? Homemade blueberry toast with a small pat of (real) butter. Within 45 minutes, I was hit with a sudden wave of nausea, a bad stomach ache and painful back ache. Within 15 more minutes I was feeling very weak, and was trembling. 15 more minutes later, I had a 100.4-degree fever and was sick to my stomach. Being a Saturday, the clinic was closed, and I knew something was wrong. I kept running to the bathroom, thinking I could "push it out" because my whole abdomen was hurting so bad.

I thought maybe I could try some Pepto-Bismol, but the label said not to take if you have a fever, or an ulcer (still an unknown for me at this point), but we called the hopsital and the nurse said it was okay to take the Pepto-Bismol, and some Tylenol for the fever, which I did because my fever was still rising. I felt a little better, but my stomach was still very sore. Needless to say, I was afraid to eat anything.

When I did eat during the day, I stuck to my now "usual" strict and bland diet, yet it was becoming all too clear to me that this diet wasn't the answer to my digestive troubles.

I laid on our inversion table (at 60-degrees) for 15 minutes, which seemed to alleviate the back pain quite well, but still had a serious knot in my stomach for the rest of the day. In fact, I had noticed that the sore "area" in my body was shaped like a giant teardrop, the tip of the tear being between my lower ribs, and the round "bowl" of the tear extending below my navel, encompassing the pelvic basin.

I couldn't sleep that night because I couldn't seem to find a comfortable position. I woke up on Sunday with both stomach pain and back pain. I was feeling nauseous and bloated, just like the day before. Only this time I felt like my abdomen had been run over by a truck-- it felt sore, but like an old injury, rather than anything new.

I decided that during that day (Sunday) I would not eat any gluten and see what happened. I researched the foods that I could eat without gluten and stuck to those kinds of foods: dried mangoes; fresh apples; mashed potatoes; peas; foods of that basic nature. And guess what? Though my stomach was sore, there was no new hurt, no new inflammatory-type pain, no new intestinal distress.... just peace, for the first time in a long time.

I did the inversion therapy again for 15 minutes to alleviate the back pain, and it worked quite well. I also practiced yoga breathing and some simple yoga movements, which I started as an attempt to reduce stress a couple weeks ago. I found that I enjoy the feeling I get with the yoga breathing and improved posture. Overall, the day was a much better day for my digestive system.

The next day, Monday (Day 2), I woke up with a small stomach ache, --more from the 'old injury' and nothing new. I wondered how long it would take to heal a sore stomach? I had to skip breakfast because I was scheduled to get my cholesterol checked at the clinic, for which fasting for 12 hours is required. It wasn't the first time I noticed how much better I felt without food in my stomach!!

For the second day in a row, I stuck to foods with no gluten. I also continued with the 15-minute inversion therapy sessions for my sore back. And guess what? I felt pretty good!! I even made a loaf of gluten-free bread because bread is such a big comfort food for me. All in all, not a bad day!

Websites that I found particularly helpful:

• http://www.gicare.com/diets/Gluten-Free.aspx
  Very informative for me because I came into this with preconceived notions and ideas of how CD would leave me with no reason to eat again...
• http://www.glutenfree-supermarket.com/default.aspx
  I haven't used this site yet, but like the fact that it (and many others) are there because G-Free food is scattered about this town and difficult to find economically feasible and in one location.
• http://www.csaceliacs.org/IntheKitchen.phpThis site is a godsend-- I can still eat chocolate (unless it is a "no-no" for my acid reflux which has not been ruled out, yet)!!

I hope to continue this journey until I can find answers to my digestive problems. I suspect, that if I have Celiac Disease, I may likely still have acid reflux, or even a hiatal hernia. But perhaps finding answers to one, will lead to answers to the other. We will see how this day pans out