Week 25 was a very busy week, but I made sure I remembered to use the proper bioidentical hormone creams twice daily as I attempted to see if there would be any changes in the trembling I had been experiencing most notably during the night. I started with progesterone cream and would continue with this for a couple weeks and then stop for a week before starting estrogen cream.
Early in the week I noted that my heart doesn’t seem to like it when I lay down in certain positions, such as directly on my left side. It often feels as though it loses its pumping efficiency and I find myself changing positions so that I can breathe easier. I found that if I lay at an angle (not directly on either side, but leaning forward or back), breathing becomes more comfortable.
The trembling I had experienced over the past several weeks had died down somewhat during the first part of the week and so I thought maybe the progesterone cream was working, but the trembling reoccurred in the chest area about midweek, though it was relatively minor.
My exercise routine actually seemed to get easy enough for me to kick it up a notch and walk a bit faster at about 4 mph. This lasted for several days, but by the end of the week it felt like more of a challenge again. During one session on the Pilates Reformer I felt some mild heart fluttering and so took it easy during that session. That was the only time something like that happened during the week. Exercise totals included 90 minutes strength-training and 15.5 miles on the treadmill.
Overall, it was not a remarkable week and contained all the usual stresses of life. In spite of the days I didn't feel like exercising or was too stressed, I continued to keep it up even if it was at a minimum. I'm not ready to give up yet. It ain't over!
Wednesday, June 30, 2010
Week 24 Recap: Celiac and Menopause?
Week 24 started out much better than the previous week, though I still wasn’t sleeping very well and continued to experience pronounced night-time internal trembling. At one point, the nocturnal trembling/tremors got to me and I did more Googling even though I hadn’t been able to find much about it with previous internet searches. This time was different.
This time I found a website called PowerSurge which is “an informative and supportive menopause community for women going through the transition of perimenopause to postmenopause.” I was very excited about this because I also knew that this was the exact time of life I was going through. My mind began to make instant connections.
The more I read on this website the more I began to believe that perimenopause might be the cause of just about everything I had gone through for at least the past year! I continued to read about the “34 Signs of Menoapuse” which I will list here even though I do not have all of these symptoms and most women never will have all of them at once:
I also figured that many of my symptoms were alleviated by going gluten-free. I wondered if there was a connection between gluten intolerance and hormones or more specifically, peri- and- menopause.
Though Week 24 was a long and difficult one, culminating in a dance recital for my girls and additional schoolwork toward my college degree, I felt my health was once again on the rebound. I was able to clock in over three hours of strength training (105 minutes of Pilates and 100 minutes on the Reformer), and logged 17.3 miles on the treadmill—all with complete normalcy… and that is a good thing.
This time I found a website called PowerSurge which is “an informative and supportive menopause community for women going through the transition of perimenopause to postmenopause.” I was very excited about this because I also knew that this was the exact time of life I was going through. My mind began to make instant connections.
The more I read on this website the more I began to believe that perimenopause might be the cause of just about everything I had gone through for at least the past year! I continued to read about the “34 Signs of Menoapuse” which I will list here even though I do not have all of these symptoms and most women never will have all of them at once:
- Hot flashes, flushes, night sweats and/or cold flushes
- Bouts of rapid heartbeat (including palpitations, skipped heartbeats and irregular heartbeats)
- Irritability
- Mood swings, sudden tears
- Trouble sleeping
- Irregular periods (including phantom periods when you experience the symptoms that come with the onset of a period, but no period arrives. This is apparently common in perimenopause.)
- Loss of libido
- Vaginal dryness
- Crashing fatigue
- Anxiety, feeling ill at ease
- Feelings of dread, apprehension, and doom
- Difficulty concentrating, disorientation, and mental confusion
- Disturbing memory lapses
- Incontinence
- Itchy, crawly skin
- Aching, sore joints, muscles and tendons
- Increased tension in muscles
- Breast tenderness
- Headache change (increase or decrease
- Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
- Sudden bouts of bloat
- Depression
- Exacerbation of any existing conditions
- Increase in allergies
- Weight gain (particularly around waist and thighs)
- Hair loss or thinning
- Dizziness, light-headedness, episodes of loss of balance
- Changes in body odor
- Electric shock sensation under the skin and in the head
- Tingling in the extremities
- Gum problems, increase bleeding
- Burning tongue
- Osteoporosis (after several years)
- Brittle fingernails, which peel and break easily
- Dry skin / skin changes
- Internal shaking / tremor-like feelings
- Acne and other skin eruptions
- Itching wildly and erratic rashes
- Shoulder pain / joints / arthritis development or flare-up
- “Heart pain” – a feeling of pain in the area of the heart
- Acid reflux / heartburn / difficulty digesting certain foods
HELLO? What is going on with the medical community these days? During the first three months of the onset of my ‘illness’, I was offered anti-anxiety drugs by at least three different medical providers without even looking further into any physical reason for why I was suddenly (keyword) having these symptoms.
The Internal shaking/tremor forum comments ran well into the thousands and I could read every day for hours and never be able to keep up with them all as more are being posted every day. But the general consensus seems to be that no one knows why these tremors/tremblings happen. Some have them in place of hot flashes, and some have them at specific times of the month, but most believe it is related somehow to our endocrine system and the fluctuations in estrogen and progesterone.
This caused me to think two things: First, I was okay. If thousands of other women were experiencing this around the globe and were going through the same ‘change of life’ as myself, then it was probably harmless. Second, I remembered back to when these tremors started – almost a year ago when I stopped using estrogen and progesterone creams because I couldn’t afford them. Probably within a couple months, the tremors started in my neck. I remember this distinctly even though it didn’t happen very often -- at first I thought my carotid pulse was racing! But when I put my hand on my chest or when I felt my carotid artery, it was calm. I didn’t think much of it as it happened off and on throughout the end of summer and early fall. By late fall, things came crashing down and my journey here began.
I also made the connection between the strange, oblong vertical bumps on my fingernails and the endocrine system (I found it here). Again—the endocrine system—which in general, regulates our hormones and glands.
I figured it was time to get back on the estrogen and progesterone creams and see if there was any improvement with anything. More about the endocrine system can be found at the National Institute of Health.
I also figured that many of my symptoms were alleviated by going gluten-free. I wondered if there was a connection between gluten intolerance and hormones or more specifically, peri- and- menopause.
Though Week 24 was a long and difficult one, culminating in a dance recital for my girls and additional schoolwork toward my college degree, I felt my health was once again on the rebound. I was able to clock in over three hours of strength training (105 minutes of Pilates and 100 minutes on the Reformer), and logged 17.3 miles on the treadmill—all with complete normalcy… and that is a good thing.
Week 23 Recap: Pressing the Re-Set Button
About 10 years ago I fell in love with an X-Box game my kids used to play called Need For Speed. It was a racing game in which as you earned points you could buy better and faster cars and race against other drivers in beautiful locations around the world. If I ever got stuck or couldn't maneuver, I could push the black re-set button and my car would be re-positioned and ready to go. I have oftened wished for a re-set button in life.
As the month of May ended and June began, it marked the seventh month since my journey to regain my health began. The question as to whether or not I actually have celiac disease remains debatable, though my personal inclination is to lean toward a gluten intolerance brought on by something else, possibly a virus. Swine flu was running rampant through the town last year, and in fact I believe one of my own children came down with it as well. Perhaps there was something in all the viruses floating around that attacked my system in a different way.
Week 23 started out with almost no sleep again, with my personal GPS (code for vertigo) still out of whack, frequently causing bouts of nausea and an upset stomach. And if that wasn’t enough, I was walking around with an internal ‘buzz’ for most of the week, like some kind of massive caffeine high (I haven't had any caffeine for 7 months).
With the onset of the vertigo last week I decided I’d had enough with all the drugs and vitamin supplements. I rebelled and quit taking the prescribed ergocalciferol, and all the vitamins with the exception of calcium/magnesium, iron, and 325 mg enteric-coated aspirin (prescribed by the internist when they thought I might have had a TIA).
I went to my internist on Tuesday to discuss the results of the thyroid blood draws the previous week and the vertigo. The blood tests were all within normal range, and though he had no explanation for the vertigo, he performed the canalith repositioning exercises on me (a good description of this procedure can be found here) and in the process taught me how to do it myself until the vertigo went away. He explained that he experienced it himself last summer and took care of it successfully.
I performed the repositioning exercises faithfully at least four times a day, and even though most of the reactions seemed delayed (about 20 seconds after changing positions) and sometimes the reactions hit with a bang, the vertigo gradually improved until it was completely gone within 48 hours after my first repositioning session.
The end of the week brought more pronounced internal (and nocturnal) trembling in the chest area. Sometimes it even seemed to migrate down my arms towards my hands. Was it because I eliminated the extra vitamin supplements from my diet? Was this yet another withdrawal reaction? I don’t know. Only time will tell.
My exercise routine was very successful throughout the week with just over 4 hours of strength training exercises including 150 minutes of Pilates and 100 minutes on the Reformer. Additionally I walked 19 miles on the treadmill at a brisk pace.
It was a good week, but one which was clouded with apprehension with the reminder that anything could go wrong with little warning.
As the month of May ended and June began, it marked the seventh month since my journey to regain my health began. The question as to whether or not I actually have celiac disease remains debatable, though my personal inclination is to lean toward a gluten intolerance brought on by something else, possibly a virus. Swine flu was running rampant through the town last year, and in fact I believe one of my own children came down with it as well. Perhaps there was something in all the viruses floating around that attacked my system in a different way.
Week 23 started out with almost no sleep again, with my personal GPS (code for vertigo) still out of whack, frequently causing bouts of nausea and an upset stomach. And if that wasn’t enough, I was walking around with an internal ‘buzz’ for most of the week, like some kind of massive caffeine high (I haven't had any caffeine for 7 months).
With the onset of the vertigo last week I decided I’d had enough with all the drugs and vitamin supplements. I rebelled and quit taking the prescribed ergocalciferol, and all the vitamins with the exception of calcium/magnesium, iron, and 325 mg enteric-coated aspirin (prescribed by the internist when they thought I might have had a TIA).
I went to my internist on Tuesday to discuss the results of the thyroid blood draws the previous week and the vertigo. The blood tests were all within normal range, and though he had no explanation for the vertigo, he performed the canalith repositioning exercises on me (a good description of this procedure can be found here) and in the process taught me how to do it myself until the vertigo went away. He explained that he experienced it himself last summer and took care of it successfully.
I performed the repositioning exercises faithfully at least four times a day, and even though most of the reactions seemed delayed (about 20 seconds after changing positions) and sometimes the reactions hit with a bang, the vertigo gradually improved until it was completely gone within 48 hours after my first repositioning session.
The end of the week brought more pronounced internal (and nocturnal) trembling in the chest area. Sometimes it even seemed to migrate down my arms towards my hands. Was it because I eliminated the extra vitamin supplements from my diet? Was this yet another withdrawal reaction? I don’t know. Only time will tell.
My exercise routine was very successful throughout the week with just over 4 hours of strength training exercises including 150 minutes of Pilates and 100 minutes on the Reformer. Additionally I walked 19 miles on the treadmill at a brisk pace.
It was a good week, but one which was clouded with apprehension with the reminder that anything could go wrong with little warning.
Week 22 Recap: …And Two Steps Back
Week 22 started out with a scare. I was getting ready for the day, doing my Facemaster (which I have used for about 6 years now), when I suddenly started having multiple palpitations (a rather large flip-flop) to the point where my heart began to pound rapidly. It was rather frightening because for about 5-10 seconds my heart just could not get back on track. My pulse jumped to about 110. I didn't know what to make of it. I wasn't stressed, wasn't thinking about anything in particular, just watching TV while doing my face. I was completely relaxed, although after that little incident I have to admit I was pretty frightened.
I couldn’t remember the last time I felt like that. In the past I had experienced a sudden rapid and pounding heart beat, and had experienced the multiple palpitation/flip-flop feeling but couldn't remember when/if I had ever felt the two of them together. It was quite disconcerting because I thought I was over all of that!
After the ‘incident’ my left chest was aching, as well as my left arm. I was thinking it may be an anxiety reaction. I wasn’t under stress, but felt frustrated because I had been doing so much better, and now this – totally out of the blue, for no apparent reason. I couldn’t shake the anxiety and so ended up taking 1 mg lorazepam, which made me groggy for the rest of the day. Though I felt physically fine, I was emotionally let down. It depressed me because I felt like I went through an event that had no reason for happening. If I knew the cause, I could dismiss it and move on. Perhaps last week’s stomach upsets and chest fluttering led to this latest development?
I determined to ignore it the best I could. Just -- it is what it is-- it happened, I don't know what it is, get on with life.
After about two weeks of quitting Prilosec my stomach finally began to settle down, though I continued to experience the internal trembling that no doctors have been able to address so far. When it happens during the day it is like a major caffeine buzz, but at night it seems more pronounced and can be felt through the skin. I began to wonder if all this internal trembling is related to something with my nervous system that may also occasionally interfere with the electrical conduction of my heart.
I had a checkup with the internist this week and talked to him about the sudden flip-flop I had experienced out of the blue. He said if I had a mitral valve prolapse (MVP) it would have been spotted on the echocardiogram we did back in January, and that he didn’t think I had dysautonomia, but he wanted to recheck all of my thyroid levels—particularly because he noticed that my weight had gone up and then back down quite rapidly (in a few months time). He also mentioned that he was going to be talking with someone else about my case to help get some answers, which is always nice to know.
I asked him when I might see an improvement in the osteopenia and he said it could take up to 2 years to see a difference in bone density. It was a good visit – my blood pressure was 102/74 and my pulse was 84 – a little elevated for me but probably because I was nervous. I had about 5 tubes of blood drawn for the thyroid and iron blood tests.
The internal trembling continued throughout the week and at night it even felt like my eyelids were trembling. Another strange and new symptom began appearing this week: dizziness especially upon awakening and upon sitting up. In the meantime, I continued to take the clobetasol proprionate ointment as prescribed for the rashes on my arms.
I began to have stress days. For some weird reason I just couldn’t seem to control my levels of stress. My brain was telling me something was wrong or going go happen even though there was no physical indication or rationale for such an event. I felt like the Star Trek character Data when his emotion chip is implanted and it goes awry. Once it is deactivated he normalizes. It felt as though my stress ‘chip’ had gone awry and I didn’t know what to make of it. I had never felt that way before. I took a lorazepam and went to bed.
As I have learned since becoming seriously ill last October —if there is ever any type of new symptom I need to first look at what I’ve been doing differently or what drug was recently prescribed for me. In this case, the only thing new was the clobetasol proprionate ointment. I did a little Googling and found that it has been well established that low doses of topical clobetasol proprionate can cause adrenal suppression in some people. The adrenals are responsible for our ability to deal with stress! I immediately made the mental connection, though I was completely caught off-guard —it had never occurred to me that a topical ointment could produce this kind of reaction in me —but then again, over the past seven months my body had been reacting to everything!
One particular article I found came from the Journal of the Royal Society of Medicine entitled “Adrenal Suppression Following Low-dose Topical Clobetasol Proprionate” which said specifically:
The article described “4 patients who used clobetasol propionate cream over a prolonged period; 3 patients used less than 50 g per week (7.5, 25 and 30 g per week) and yet all developed secondary adrenal failure for up to 4 months after cessation of therapy” (Boldface added).
The conclusion was that “relatively small doses of clobetasol propionate cream may cause adverse systemic effects, with suppression of the HPA axis occurring more commonly than has previously been recognized.”
So what is the HPA axis and what happens when it is suppressed?
My first thoughts were: Could this really be the case? Just applying a small amount as prescribed? But I already knew my answer. My second thoughts were: That's all I need to know. My adrenals were already fatigued by my own diagnosis. Stop taking it. Immediately.
ODD THINGS DURING THE WEEK:
I couldn’t remember the last time I felt like that. In the past I had experienced a sudden rapid and pounding heart beat, and had experienced the multiple palpitation/flip-flop feeling but couldn't remember when/if I had ever felt the two of them together. It was quite disconcerting because I thought I was over all of that!
After the ‘incident’ my left chest was aching, as well as my left arm. I was thinking it may be an anxiety reaction. I wasn’t under stress, but felt frustrated because I had been doing so much better, and now this – totally out of the blue, for no apparent reason. I couldn’t shake the anxiety and so ended up taking 1 mg lorazepam, which made me groggy for the rest of the day. Though I felt physically fine, I was emotionally let down. It depressed me because I felt like I went through an event that had no reason for happening. If I knew the cause, I could dismiss it and move on. Perhaps last week’s stomach upsets and chest fluttering led to this latest development?
I determined to ignore it the best I could. Just -- it is what it is-- it happened, I don't know what it is, get on with life.
After about two weeks of quitting Prilosec my stomach finally began to settle down, though I continued to experience the internal trembling that no doctors have been able to address so far. When it happens during the day it is like a major caffeine buzz, but at night it seems more pronounced and can be felt through the skin. I began to wonder if all this internal trembling is related to something with my nervous system that may also occasionally interfere with the electrical conduction of my heart.
I had a checkup with the internist this week and talked to him about the sudden flip-flop I had experienced out of the blue. He said if I had a mitral valve prolapse (MVP) it would have been spotted on the echocardiogram we did back in January, and that he didn’t think I had dysautonomia, but he wanted to recheck all of my thyroid levels—particularly because he noticed that my weight had gone up and then back down quite rapidly (in a few months time). He also mentioned that he was going to be talking with someone else about my case to help get some answers, which is always nice to know.
I asked him when I might see an improvement in the osteopenia and he said it could take up to 2 years to see a difference in bone density. It was a good visit – my blood pressure was 102/74 and my pulse was 84 – a little elevated for me but probably because I was nervous. I had about 5 tubes of blood drawn for the thyroid and iron blood tests.
The internal trembling continued throughout the week and at night it even felt like my eyelids were trembling. Another strange and new symptom began appearing this week: dizziness especially upon awakening and upon sitting up. In the meantime, I continued to take the clobetasol proprionate ointment as prescribed for the rashes on my arms.
By mid-week it was clear that this was
going to continue to be a very strange week!
I began to have stress days. For some weird reason I just couldn’t seem to control my levels of stress. My brain was telling me something was wrong or going go happen even though there was no physical indication or rationale for such an event. I felt like the Star Trek character Data when his emotion chip is implanted and it goes awry. Once it is deactivated he normalizes. It felt as though my stress ‘chip’ had gone awry and I didn’t know what to make of it. I had never felt that way before. I took a lorazepam and went to bed.
As I have learned since becoming seriously ill last October —if there is ever any type of new symptom I need to first look at what I’ve been doing differently or what drug was recently prescribed for me. In this case, the only thing new was the clobetasol proprionate ointment. I did a little Googling and found that it has been well established that low doses of topical clobetasol proprionate can cause adrenal suppression in some people. The adrenals are responsible for our ability to deal with stress! I immediately made the mental connection, though I was completely caught off-guard —it had never occurred to me that a topical ointment could produce this kind of reaction in me —but then again, over the past seven months my body had been reacting to everything!
One particular article I found came from the Journal of the Royal Society of Medicine entitled “Adrenal Suppression Following Low-dose Topical Clobetasol Proprionate” which said specifically:
“The use of topical steroids is associated with adverse systemic effects such as suppression of the hypothalamic-pituitary-adrenal (HPA) axis, and application of more than 50 g per week of clobetasol propionate cream has been shown to cause secondary adrenal failure” (Volume 80, July 1987).
The article described “4 patients who used clobetasol propionate cream over a prolonged period; 3 patients used less than 50 g per week (7.5, 25 and 30 g per week) and yet all developed secondary adrenal failure for up to 4 months after cessation of therapy” (Boldface added).
The conclusion was that “relatively small doses of clobetasol propionate cream may cause adverse systemic effects, with suppression of the HPA axis occurring more commonly than has previously been recognized.”
So what is the HPA axis and what happens when it is suppressed?
According to Oregon State University’s Student Health Services:
“The HPA axis can be thought of as the body's ‘stress sytem’. It controls the levels of cortisol (the ‘stress hormone’) and other important stress-related hormones. The HPA axis can also be thought of as the body's energy regulator, because it is also responsible for controlling virtually all of the hormones, nervous system activity and energy expenditure in the human body, as well as modulating the immune system. When the HPA axis becomes suppressed, your body will not be able to properly regulate your stress and energy levels, which can manifest in fatigue, suppressed immune system, depression, and anxiety. If you are experiencing such symptoms, you should see your health care provider for recommendations on the appropriate course of action.”
My first thoughts were: Could this really be the case? Just applying a small amount as prescribed? But I already knew my answer. My second thoughts were: That's all I need to know. My adrenals were already fatigued by my own diagnosis. Stop taking it. Immediately.
The very next day, I woke up dizzy again. So much so, that as I sat up and leaned back to get a Kleenex off my nightstand, the room began spinning violently. I waited for it to subside and slowly stood up to use the bathroom but found myself leaning and kept tripping. As I went to get breakfast, I continued to feel very light-headed and off balance. I knew it was vertigo, and made an appointment to see my internist. He was out of town and so I was seen by a Nurse Practitioner, who subsequently diagnosed me with benign paroxysmal positional vertigo (BPPV) and recommended canalith repositioning exercises with a physical therapist (at this point, dollar signs began spinning around the room with everything else. I decided to wait until my internist got back into town and ask his advice.)
In the meantime, the NP prescribed meclizine (for the nausea that accompanied the dizziness) and a nasal spray: fluticasone proprionate. Great… more drugs…. I took the nasal spray and the meclizine the first day, but nothing more after that.
ODD THINGS DURING THE WEEK:
- Experienced some minor tightness/twinges of pain in upper left side of chest off and on early in the week.
- Experienced some mild left-subclavian pain again off and on
- Vertigo throughout the latter half of the week
- More pronounced internal trembling particularly in chest area
When thinking back and wondering why I felt like I had been slipping backwards that week, I thought about my first heart events (for lack of a better work) last October. It seemed like they really slammed me down hard. A lot of things were going wrong before I was finally able to climb back up. And that is how I felt at this point. The strong cardiac flip-flop last Sunday followed by weird new symptoms: vertigo/dizziness and more weight loss without trying and without exercising most of the week. It was all so weird. Whether anything was connected to the other I had no way of knowing—especially after feeling so much better for a couple of months. It truly did feel like two steps backward.
Tuesday, June 29, 2010
Week 21 Recap: One Step Forward…
With normalcy gradually creeping back into my life, I started my last two classes for my bachelor’s degree in Business Administration. It would have been a lot easier if only I could get some decent hours of sleep!
The week started out less than ideal due to intermittent stomach aches which I chalked up to Prilosec withdrawal. I was perfectly aware that rebound reflux would occur with withdrawal, and it certainly did occur! The stomach aches lasted most of the week and I probably did not help by ingesting some questionable potato chips: Maui chips. Feeling so much better and thinking I probably did not have celiac after all, I became a little lax in checking ingredients. I sampled several Maui chips but within a day was not too happy about that little indiscretion. It was a stupid mistake.
As if the stomach aches weren’t bad enough, I began breaking out in random hives toward the end of the week. For my ailing stomach I ended up taking Mylanta, but it didn’t seem to do much to alleviate the discomfort.
I continued my exercise routines, however, but almost every day there was some gastric-type fluttering in my upper chest along with a ‘foamy’ (for lack of better description) feeling in chest and esophagus—the kind that goes with an upset stomach.
By the end of the week, nausea was accompanying my stomach aches. Saturday marked my 11th day since I had stopped taking Prilosec completely. I knew the withdrawal stomach aches could last two weeks or so, but I wasn’t expecting it to be this bad! The last time my stomach felt this bad was when I was eating wheat bread—hence the wondering if I had been glutened by those Maui chips early in the week.
ODD THINGS THIS WEEK:
The week started out less than ideal due to intermittent stomach aches which I chalked up to Prilosec withdrawal. I was perfectly aware that rebound reflux would occur with withdrawal, and it certainly did occur! The stomach aches lasted most of the week and I probably did not help by ingesting some questionable potato chips: Maui chips. Feeling so much better and thinking I probably did not have celiac after all, I became a little lax in checking ingredients. I sampled several Maui chips but within a day was not too happy about that little indiscretion. It was a stupid mistake.
As if the stomach aches weren’t bad enough, I began breaking out in random hives toward the end of the week. For my ailing stomach I ended up taking Mylanta, but it didn’t seem to do much to alleviate the discomfort.
I continued my exercise routines, however, but almost every day there was some gastric-type fluttering in my upper chest along with a ‘foamy’ (for lack of better description) feeling in chest and esophagus—the kind that goes with an upset stomach.
By the end of the week, nausea was accompanying my stomach aches. Saturday marked my 11th day since I had stopped taking Prilosec completely. I knew the withdrawal stomach aches could last two weeks or so, but I wasn’t expecting it to be this bad! The last time my stomach felt this bad was when I was eating wheat bread—hence the wondering if I had been glutened by those Maui chips early in the week.
ODD THINGS THIS WEEK:
- Several flutterings in chest during treadmill walks and weight-resistance exercises.
- Heart flutter that caused me to cough (that hasn’t happened in a while!)
My exercise totals included 80 minutes of strength-training (20 minutes Pilates, 60 minutes weight-bearing exerciseso on the reformer), and 11 miles on the treadmill. I didn’t do as well this week due to the chronic stomach aches.
Even in spite of the setbacks, I still felt I was progressing because at least I knew this Prilosec withdrawal was to be expected and I knew in time it would pass. So I was still on the right path…
Week 20 Recap: Finding Ordinary
Week 20 started off well with Mother’s Day, which translated into a movie (Iron Man 2) and dinner with the whole family. Any time I get to watch Robert Downey, Jr. is a good day. So seeing Robert Downey, Jr. and spending it with family was indeed a rare treat!!
Though I continued to have problems sleeping, I began feeling 100% on more days than not. Once the trembling subsided (presumed Prilosec withdrawal) I decided that I would stop taking it completely rather than gradually eliminating the dosage. I figured I’d rather suffer and get it over with now than continue this off-and-on thing all summer long.
On Wednesday I removed the biopsy stitches out of my arms myself. I did pretty well until the last stitch which was somewhat embedded into my skin and required a bit of digging. Started feeling queasy – don’t recommend it to others!! I’d much rather remove someone else’s stitches than my own!
No sooner had I finished pulling the stitches out, the dermatologist called. She said no sign of celiac was found in the biopsies but she was not really expecting anything to be found because the rash was no longer active—just old, chronically scratched skin-- not dermatitis herpetiformis. She said she asked the pathologist if IgA would show up and she was told that as long as the rash is still itchy it would still be present. So based on that information, she said she didn't think I had celiac. But the rash has not been itchy. In fact, it hasn’t been itchy or active since I went gluten-free. When it does itch I believe it is because of the scabbing that is trying to take place.
Regardless, the dermatologist prescribed an ointment for me which she said would make the rash go away once and for all. The prescription was for Clobetasol Proprionate USP, 0.05% which I was supposed to apply at least twice a day.
Almost all of my exercise workouts during the week were uneventful: nothing going on out of the ordinary other than some minor fluttering late in the week which felt gastric-related. I also felt some brief left-sided chest pain off and on for a day or so, but nothing alarming.
My exercise totals for the week: 100 minutes strengthening exercises, including 20 minutes of Pilates and 80 minutes weight-bearing exercises; and 14 miles on the treadmill as well.
This week was nothing much to write about.... if fact, it was rather ordinary. But do you know what? That is a good thing!
Though I continued to have problems sleeping, I began feeling 100% on more days than not. Once the trembling subsided (presumed Prilosec withdrawal) I decided that I would stop taking it completely rather than gradually eliminating the dosage. I figured I’d rather suffer and get it over with now than continue this off-and-on thing all summer long.
On Wednesday I removed the biopsy stitches out of my arms myself. I did pretty well until the last stitch which was somewhat embedded into my skin and required a bit of digging. Started feeling queasy – don’t recommend it to others!! I’d much rather remove someone else’s stitches than my own!
No sooner had I finished pulling the stitches out, the dermatologist called. She said no sign of celiac was found in the biopsies but she was not really expecting anything to be found because the rash was no longer active—just old, chronically scratched skin-- not dermatitis herpetiformis. She said she asked the pathologist if IgA would show up and she was told that as long as the rash is still itchy it would still be present. So based on that information, she said she didn't think I had celiac. But the rash has not been itchy. In fact, it hasn’t been itchy or active since I went gluten-free. When it does itch I believe it is because of the scabbing that is trying to take place.
Regardless, the dermatologist prescribed an ointment for me which she said would make the rash go away once and for all. The prescription was for Clobetasol Proprionate USP, 0.05% which I was supposed to apply at least twice a day.
Almost all of my exercise workouts during the week were uneventful: nothing going on out of the ordinary other than some minor fluttering late in the week which felt gastric-related. I also felt some brief left-sided chest pain off and on for a day or so, but nothing alarming.
My exercise totals for the week: 100 minutes strengthening exercises, including 20 minutes of Pilates and 80 minutes weight-bearing exercises; and 14 miles on the treadmill as well.
This week was nothing much to write about.... if fact, it was rather ordinary. But do you know what? That is a good thing!
Tuesday, May 11, 2010
Week 19 Recap: The Road Ahead
The week started out with more trembling and fluttering than I care to deal with, particularly because it worsened at night and often lasted till morning. If you’ve been following this blog, then you know that I found a possible connection between these bizarre symptoms and PPI (Prilosec) withdrawal (or any drug withdrawal, for that matter). Once I figured this out, I knew it would pass and determined not to take any more drugs for anything, if it can be helped.
I saw a dermatologist during the week with regard to the rash on my right wrist/forearm which I have had for almost six years now (possible dermatitis herpetiformis), as well as the rash near my left elbow which showed up about a year ago. She did not say what she thought of either rash, other than the one on my right wrist is clearly quite aged. She proceeded to take a biopsy of each, and I left her office with an unexpected six stitches, three in each arm. It will be interesting to see what she finds, if anything.
Toward the end of the week the night-time trembles began to die down in intensity, and other than being extremely busy sewing costumes for an upcoming talent show in which my dancing girls were participating, there were no new symptoms or return of any old symptoms. In spite of the exhaustion that comes from very little sleep and too much to do, it was a good week.
I tried to maintain my “physical therapy” even during this very busy week because it is the one thing I am not yet willing to trade-off for more time. I have to take care of my body, and the physical exercise is probably the biggest and best thing I can do right now. All of my treadmill walks went very well (walking 18.8 miles), and I feel my heart has finally reached a significant point of healing. Though I still get a heart palpitation about once a week or so, I have had none during any treadmill walks, nor have I had any chest pain of any kind.
I was not as successful in maintaining Pilates during the week (only 30 minutes), probably because it is usually the form of exercise I do last (in the evening) and all my evenings were absorbed in sewing and fitting costumes. I did, however, keep up the weight-bearing exercises on the Pilates Reformer (110 minutes)—which I know will continue to benefit my bones.
ODD THINGS THIS WEEK:
From where I stand now, the road ahead appears to be a good one. I am not even so sure I want to "test" myself with gluten because I am doing so much better now, even though it has been a long time coming. Yet I know the dreaded "test" must probably be done at some point in the future so I have a certain answer, one way or the other, as to what was/is making me sick, and so I know how to react in the future should I be "contaminated" in any way.
I can only say that prior to last year, I had never been sensitive to any foods, nor any medications whether it be over-the-counter or prescription. I do know that I suffered a traumatic event when my husband suffered a massive heart attack, and though it was the hardest thing I had ever had to deal with from all aspects of my life up until then, I felt it was behind us. And then there was the added stress of the "heart attack fallout" -- no money, no way to pay the bills, and watching my credit that I had worked so hard to build take a nosedive. As if that wasn't enough, dealing with my husband and his erratic mood swings was apparently more than my body could take. I felt I was on the verge of a major breakdown almost every week... turns out, my body did breakdown-- it just wasn't mental, it was physical.
All these events may have very well served as the catalyst, the trigger that set off the illness that slammed me down late last fall. Interestingly, celiac can be triggered by just such events. Though some people will not believe I have celiac, and though I have tried to dismiss it myself, I can't -- no matter how badly I want to -- and so life moves on.
I saw a dermatologist during the week with regard to the rash on my right wrist/forearm which I have had for almost six years now (possible dermatitis herpetiformis), as well as the rash near my left elbow which showed up about a year ago. She did not say what she thought of either rash, other than the one on my right wrist is clearly quite aged. She proceeded to take a biopsy of each, and I left her office with an unexpected six stitches, three in each arm. It will be interesting to see what she finds, if anything.
Toward the end of the week the night-time trembles began to die down in intensity, and other than being extremely busy sewing costumes for an upcoming talent show in which my dancing girls were participating, there were no new symptoms or return of any old symptoms. In spite of the exhaustion that comes from very little sleep and too much to do, it was a good week.
I tried to maintain my “physical therapy” even during this very busy week because it is the one thing I am not yet willing to trade-off for more time. I have to take care of my body, and the physical exercise is probably the biggest and best thing I can do right now. All of my treadmill walks went very well (walking 18.8 miles), and I feel my heart has finally reached a significant point of healing. Though I still get a heart palpitation about once a week or so, I have had none during any treadmill walks, nor have I had any chest pain of any kind.
I was not as successful in maintaining Pilates during the week (only 30 minutes), probably because it is usually the form of exercise I do last (in the evening) and all my evenings were absorbed in sewing and fitting costumes. I did, however, keep up the weight-bearing exercises on the Pilates Reformer (110 minutes)—which I know will continue to benefit my bones.
ODD THINGS THIS WEEK:
- Stomach ache again followed by same symptoms as usual-- kind of like a huge caffeine buzz-- nervousness and inner trembling.
- Discovered vertical rows of tiny bumps on my fingernails, most noticeable on my ring fingers. They are not the vertical ridges (which I also have), but tiny oblong bumps. Since they run the entire length of the nail I am guessing they have been there for a while. The dermatologist did not seem to know what they were and was unsuccessful at getting a good photograph of them.
- During one night, I felt strong muscle tremors in neck-- so much so that it woke me up. I remember making a mental note of it.
From where I stand now, the road ahead appears to be a good one. I am not even so sure I want to "test" myself with gluten because I am doing so much better now, even though it has been a long time coming. Yet I know the dreaded "test" must probably be done at some point in the future so I have a certain answer, one way or the other, as to what was/is making me sick, and so I know how to react in the future should I be "contaminated" in any way.
I can only say that prior to last year, I had never been sensitive to any foods, nor any medications whether it be over-the-counter or prescription. I do know that I suffered a traumatic event when my husband suffered a massive heart attack, and though it was the hardest thing I had ever had to deal with from all aspects of my life up until then, I felt it was behind us. And then there was the added stress of the "heart attack fallout" -- no money, no way to pay the bills, and watching my credit that I had worked so hard to build take a nosedive. As if that wasn't enough, dealing with my husband and his erratic mood swings was apparently more than my body could take. I felt I was on the verge of a major breakdown almost every week... turns out, my body did breakdown-- it just wasn't mental, it was physical.
All these events may have very well served as the catalyst, the trigger that set off the illness that slammed me down late last fall. Interestingly, celiac can be triggered by just such events. Though some people will not believe I have celiac, and though I have tried to dismiss it myself, I can't -- no matter how badly I want to -- and so life moves on.
Thursday, May 6, 2010
Omeprazole (Prilosec) Withdrawal
Writing often helps me to sort out my thoughts. It has been that way for my entire life. If I want to figure something out, all I need to do is start writing. And true to form, while writing my weekly recap it suddenly occurred to me that the strange stomach aches and trembling I had been feeling for the past couple of weeks might be connected to my cutting back on Prilosec, as per doctor's orders.
I checked back in my Food/Symptom journal and sure enough, the trembling began within a few days of cutting my daily Prilosec dosage in half, from 40 mg/day, to 20 mg/day. The last time I experienced trembling of the same sort was when I stopped taking clonazepam. The trembling lasted about a couple weeks. Could it be that my body simply "withdraws" from chemicals in this bizarre way? Could a simple, over-the-counter drug have this kind of effect on the body? I had to check it out.
Doing the usual internet search (Google), I was amazed to find so much information available about Prilosec withdrawal. Why hadn't anyone warned me that it was possible and what I might expect?
According to many websites, the side effects for medications are also the side effects of withdrawal. The particular Prilosec I have been taking is omeprazole, delayed-release capsules. Prilosec is a proton-pump-inhibitor (PPI).
So what is a Proton Pump Inhibitor (PPI)? Without getting into too much detail, the stomach produces acid (mainly hydrochloric acid) in order to break down our food so it can be digested. This acid is released through proton pumps which allow the chemical to pass into the stomach. Sometimes the stomach produces too much acid, which may spill into the esophagus and cause heart burn or acid reflux. The proton pump inhibitor (PPI) is supposed to inhibit the body's ability to produce stomach acid.
Omeprazole (brand name Prilosec) "blocks the final step of acid production.... Animal studies indicate that after rapid disappearance from plasma, omeprazole can be found within the gastric mucosa for a day or more" (i.e., the effects linger on) (PharmaInfo).
According to the July 1, 2009 edition of Family Practice News, after 8 weeks on a PPI, patients ended up with rebound heartburn, acid regurgitation, and dyspepsia (upset stomach or indigestion). The article "PPI Withdrawal Triggers Acid Hypersecretion" by Mary Ann Moon points out that "Rebound symptoms were clinically significant in the study subjects, causing mild to moderate discomfort for at least 2 weeks after withdrawal of daily PPI therapy--a 'remarkable' finding given that 40% of the study subjects had never experienced such symptoms before, wrote Dr. Reimer of the department of medical gastroenterology at Copenhagen University and her associates."
Symptoms of PPI withdrawal may include:
Interestingly, the study (double-blind, placebo-controlled design, including blinded withdrawal of PPI) found that "greater than 40% of healthy volunteers who have never been bothered by heartburn, acid regurgitation, or dyspepsia, develop such symptoms in the weeks after cessation of PPI" (Gastroenterology, boldface added).
I am not the only one to believe PPIs are greatly over-prescribed. I have seen it in my friends, and I have seen it in my own family: Feeling a little indigestion? Let's put you on a PPI and dismiss it as that. As what?? My daughter was seen for an "nervous stomach" by a doctor while she was attending college. The doctor said "You must have a hiatal hernia" and prescribed Prilosec, and never saw her again. That was three years ago! She has been on Prilosec ever since, never knowing whether she actually had a hiatal hernia or not. When she stopped the Prilosec (expensive on a young adult's budget), she developed all the symptoms of withdrawal.
The internet abounds with forums and patient discussion groups regarding PPIs. Perusing a handful of these websites, I found some patient-oriented information with regard to PPI withdrawal:
Incidentally, it is a known fact that "long-term use of proton pump inhibitors increases the risk of hip fractures in adults over 50" (Ray Sahelian, MD, "Proton Pump Inhibitor Drug benefit and side effects, safety, danger and risk").
I'm not saying all doctors over-prescribe medications, but I do think that both sides of the equation carry some blame. Most patients (particularly American patients) want a quick fix. If they don't feel well, they go to the doctor and get something for it. In an attempt to avoid expensive tests and follow-ups, many doctors will give the patient what he or she asks: a quick fix. There are many more factors and sides to this ideology, but that is not my purpose in writing today.
I do have to say that I think there is a big gap between the pharmaceutical industry and patient knowledge. Somewhere between those two points lies a gap that needs to be addressed and filled. The pharmaceutical industry is getting far ahead of the medical industry and governing the direction which doctors should take. Shouldn't the medical industry govern the pharmaceutical industry, rather than the other way around? Just my two-cents...
Recommended Further Reading:
http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS001650850900780X.pdf
http://www.ncbi.nlm.nih.gov/pubmed/19362552
I checked back in my Food/Symptom journal and sure enough, the trembling began within a few days of cutting my daily Prilosec dosage in half, from 40 mg/day, to 20 mg/day. The last time I experienced trembling of the same sort was when I stopped taking clonazepam. The trembling lasted about a couple weeks. Could it be that my body simply "withdraws" from chemicals in this bizarre way? Could a simple, over-the-counter drug have this kind of effect on the body? I had to check it out.
Doing the usual internet search (Google), I was amazed to find so much information available about Prilosec withdrawal. Why hadn't anyone warned me that it was possible and what I might expect?
According to many websites, the side effects for medications are also the side effects of withdrawal. The particular Prilosec I have been taking is omeprazole, delayed-release capsules. Prilosec is a proton-pump-inhibitor (PPI).
So what is a Proton Pump Inhibitor (PPI)? Without getting into too much detail, the stomach produces acid (mainly hydrochloric acid) in order to break down our food so it can be digested. This acid is released through proton pumps which allow the chemical to pass into the stomach. Sometimes the stomach produces too much acid, which may spill into the esophagus and cause heart burn or acid reflux. The proton pump inhibitor (PPI) is supposed to inhibit the body's ability to produce stomach acid.
Omeprazole (brand name Prilosec) "blocks the final step of acid production.... Animal studies indicate that after rapid disappearance from plasma, omeprazole can be found within the gastric mucosa for a day or more" (i.e., the effects linger on) (PharmaInfo).
According to the July 1, 2009 edition of Family Practice News, after 8 weeks on a PPI, patients ended up with rebound heartburn, acid regurgitation, and dyspepsia (upset stomach or indigestion). The article "PPI Withdrawal Triggers Acid Hypersecretion" by Mary Ann Moon points out that "Rebound symptoms were clinically significant in the study subjects, causing mild to moderate discomfort for at least 2 weeks after withdrawal of daily PPI therapy--a 'remarkable' finding given that 40% of the study subjects had never experienced such symptoms before, wrote Dr. Reimer of the department of medical gastroenterology at Copenhagen University and her associates."
Symptoms of PPI withdrawal may include:
- Rebound acid hypersecretion within two weeks of withdrawal
- Heartburn
- Acid reguritation
- Dyspepsia
Interestingly, the study (double-blind, placebo-controlled design, including blinded withdrawal of PPI) found that "greater than 40% of healthy volunteers who have never been bothered by heartburn, acid regurgitation, or dyspepsia, develop such symptoms in the weeks after cessation of PPI" (Gastroenterology, boldface added).
I am not the only one to believe PPIs are greatly over-prescribed. I have seen it in my friends, and I have seen it in my own family: Feeling a little indigestion? Let's put you on a PPI and dismiss it as that. As what?? My daughter was seen for an "nervous stomach" by a doctor while she was attending college. The doctor said "You must have a hiatal hernia" and prescribed Prilosec, and never saw her again. That was three years ago! She has been on Prilosec ever since, never knowing whether she actually had a hiatal hernia or not. When she stopped the Prilosec (expensive on a young adult's budget), she developed all the symptoms of withdrawal.
The internet abounds with forums and patient discussion groups regarding PPIs. Perusing a handful of these websites, I found some patient-oriented information with regard to PPI withdrawal:
- Taper off slowly to reduce stomach pain and hypersecretion of stomach acid
- Take Rolaids Antacid tablets as needed during withdrawal
- pH levels may be out of whack
- Food allergies and sensitivities may crop up
- May experience loss of appetite
- Trembling, shaking, "buzz"
- Troubles with Vitamin D and calcium defiencies to the extent of severe bone density problems
- Risk factor for Clostridium difficile -associated diarrhea
Incidentally, it is a known fact that "long-term use of proton pump inhibitors increases the risk of hip fractures in adults over 50" (Ray Sahelian, MD, "Proton Pump Inhibitor Drug benefit and side effects, safety, danger and risk").
I'm not saying all doctors over-prescribe medications, but I do think that both sides of the equation carry some blame. Most patients (particularly American patients) want a quick fix. If they don't feel well, they go to the doctor and get something for it. In an attempt to avoid expensive tests and follow-ups, many doctors will give the patient what he or she asks: a quick fix. There are many more factors and sides to this ideology, but that is not my purpose in writing today.
I do have to say that I think there is a big gap between the pharmaceutical industry and patient knowledge. Somewhere between those two points lies a gap that needs to be addressed and filled. The pharmaceutical industry is getting far ahead of the medical industry and governing the direction which doctors should take. Shouldn't the medical industry govern the pharmaceutical industry, rather than the other way around? Just my two-cents...
Recommended Further Reading:
http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS001650850900780X.pdf
http://www.ncbi.nlm.nih.gov/pubmed/19362552
Monday, May 3, 2010
Week 18 Recap: Fine Tuning
Now that I am finally feeling like some healing is taking place in my body, it is time to start fine tuning and working on the last remaining “symptoms” that have either not been addressed or not completely gone away.
Last week went quite well – at least during the day time. All of my treadmill walks were completely normal, the palpitations and left subclavian pain have all but dissipated, and there was very little to report out of the ordinary, other than the internal trembling and fluttering that seems to be increasing, particularly in the evenings and at night. Trouble is, I can’t think of a way to describe what is going on, but I will try anyway.
It has become common for me to experience a mild stomach ache after eating—the larger the meal, the greater the stomach ache. The higher the fat content, the higher the chance for digestive problems. It will usually start with an ache, not long followed by a sensation of mild foaming or reflux, which then triggers a trembling or quivering, usually beginning in the chest makes me feel like my heart is fluttering when it is not). This is not something new for me—it has happened in the past, but it had stopped for at least a month, and then started again on April 20th and has since then increased in regularity and intensity.
The inner trembling often lasts throughout the night, and sometimes during the day as well. Sometimes it gets so bad that it feels like it triggers heart palpitations, causing me to be short of breath in the middle of the night. When that happens I have to sit up, or change positions in bed. It is scary, but I am usually so groggy it is something for which I simply make a mental note, and really don’t remember all that well.
I read recently that sometimes gallbladder disease goes hand in hand with celiac, and will do a little research on it to see if it matches these weird symptoms that have cropped up again, and promise to post the results of my research here.
ODD THINGS THIS WEEK:
Though I have mentioned the odd trembling to doctors before (for which all medical professionals gave me puzzled looks), I have yet to mention the upset stomach after eating. It will be next on my list to fine tune my health…
Last week went quite well – at least during the day time. All of my treadmill walks were completely normal, the palpitations and left subclavian pain have all but dissipated, and there was very little to report out of the ordinary, other than the internal trembling and fluttering that seems to be increasing, particularly in the evenings and at night. Trouble is, I can’t think of a way to describe what is going on, but I will try anyway.
It has become common for me to experience a mild stomach ache after eating—the larger the meal, the greater the stomach ache. The higher the fat content, the higher the chance for digestive problems. It will usually start with an ache, not long followed by a sensation of mild foaming or reflux, which then triggers a trembling or quivering, usually beginning in the chest makes me feel like my heart is fluttering when it is not). This is not something new for me—it has happened in the past, but it had stopped for at least a month, and then started again on April 20th and has since then increased in regularity and intensity.
The inner trembling often lasts throughout the night, and sometimes during the day as well. Sometimes it gets so bad that it feels like it triggers heart palpitations, causing me to be short of breath in the middle of the night. When that happens I have to sit up, or change positions in bed. It is scary, but I am usually so groggy it is something for which I simply make a mental note, and really don’t remember all that well.
I read recently that sometimes gallbladder disease goes hand in hand with celiac, and will do a little research on it to see if it matches these weird symptoms that have cropped up again, and promise to post the results of my research here.
ODD THINGS THIS WEEK:
- Felt some right-ear pain a couple of times during one night but didn’t happen again all week. Wondering if it has anything to do with being shocked by the treadmill (ear buds) several days ago.
Though I have mentioned the odd trembling to doctors before (for which all medical professionals gave me puzzled looks), I have yet to mention the upset stomach after eating. It will be next on my list to fine tune my health…
Monday, April 26, 2010
Week 17: Healing
The line between illness and healing has been a wide and blurry one for me. There has been no particular day that I can say “this is the day I began to heal.” Rather, it has been a process of careful decisions, conscientious effort, and my body’s unique timeframe. It is a process that I suspect will continue for some time, and may take many more weeks or longer. But I can say, that life is slowly returning to “normal.”
This past week was not a bad week. My sleep has actually improved (if only by minutes) and even though there were a few quirky things that occurred this week (see ODD THINGS), there was nothing to really worry me enough to consider mentioning to any health care personnel.
Early in the week I received a phone call from the gastroenterologist who performed my EGD, the stomach and small intestine biopsies, and the genetic screen for celiac disease. She told me that she had done the screen for the two genes that most commonly show celiac and that I had neither gene. She went on to tell me that even though celiac can be found on other genes, in her opinion the likelihood of that was extremely unlikely and rare. She stopped short of saying I did not have celiac, and in fact said it could still be a possibility, but she was feeling it may be gluten intolerance or even an allergy to wheat. Regardless, she recommended a follow-up with the internist who diagnosed the celiac and further recommended a visit with a dermatologist regarding the rash on my right forearm.
Not having the gene for celiac made me rethink all of my symptoms from the family history of digestive disorders, the onset of the rash five years ago, to the visits to the ER, the myocarditis, the osteopenia, the general symptoms of malnutrition and malaborption (inability to absorb nutrients which went on for years). What other illnesses or diseases could cause these types of symptoms? Why, after almost four months of going gluten-free, is my skin beginning to feel soft and supple again (after a lifetime of rough and bumpy skin)? Everything still seemed to point to celiac disease. Could a gluten intolerance have the same affect on the small intestinal villi?
I believe that I was at my sickest in mid-January of this year—about a month after going g-free, and about two-and-a-half months after radically changing my diet. Originally thinking I had GERD, I had stripped my diet of all dairy products, fatty and/or fried foods, sugar, citrus, and acidic foods. Six weeks into the GERD diet, I further eliminated all gluten. A month later, I was suffering from congestive heart failure, and an almost nonexistent immune system. Could a radical change in dietary habits cause this type of strain on my heart? Is it normal to get sicker on a gluten-free diet before getting better?
Being a member of two different celiac disease support groups, I posed this same question to the members there and received a resounding YES! I was surprised by the number of people who experienced the same story, some of which had the exact same symptoms that I experienced. Coincidence? Maybe, but it is something to think about.
Also, still having issues with the Vitamin D (ergocalciferol) and its propensity to make me feel bloated and distended, I did some research and found that large doses of magnesium may be helpful until the distension passes (http://www.easy-immune-health.com/is-constipation-a-side-effect-of-vitamin-d-comments.html and www.ctds.info/magdiet.html), so I determined to ask the doctor about this during my follow-up appointment. Could I be slightly magnesium deficient? Toward the end of the week I resorted to the good ole’ fashioned milk of magnesia cure, which worked beautifully by the next morning.
My follow-up appointment with the internist went very well, and though he gave me the option of testing myself with small amounts of gluten, he stuck to his original diagnosis of celiac disease. There are just too many other factors that point to the disease (not discounting the possibility of a gluten intolerance), and the genetic tests are not the best diagnostic tool, which made sense to me.
He also told me that the Vitamin D capsule I’m taking is made from pig’s feet (the shell coating) and that I may be having difficulty digesting it, and that when I take the Vitamin D, I should cut it open and put it in applesauce. He also told me to take 600-800 mg Magnesium with it-- that high a dose because only about 10% is actually absorbed through OTC supplements.
ODD THINGS THIS WEEK:
So even though the road between sickness and health has been bumpy beyond belief at times, and sometimes the road nearly imperceptible, the rocks and potholes are gradually thinning out, and I am beginning to see more smooth pavement than gravel.
It is a good feeling.
This past week was not a bad week. My sleep has actually improved (if only by minutes) and even though there were a few quirky things that occurred this week (see ODD THINGS), there was nothing to really worry me enough to consider mentioning to any health care personnel.
Early in the week I received a phone call from the gastroenterologist who performed my EGD, the stomach and small intestine biopsies, and the genetic screen for celiac disease. She told me that she had done the screen for the two genes that most commonly show celiac and that I had neither gene. She went on to tell me that even though celiac can be found on other genes, in her opinion the likelihood of that was extremely unlikely and rare. She stopped short of saying I did not have celiac, and in fact said it could still be a possibility, but she was feeling it may be gluten intolerance or even an allergy to wheat. Regardless, she recommended a follow-up with the internist who diagnosed the celiac and further recommended a visit with a dermatologist regarding the rash on my right forearm.
Not having the gene for celiac made me rethink all of my symptoms from the family history of digestive disorders, the onset of the rash five years ago, to the visits to the ER, the myocarditis, the osteopenia, the general symptoms of malnutrition and malaborption (inability to absorb nutrients which went on for years). What other illnesses or diseases could cause these types of symptoms? Why, after almost four months of going gluten-free, is my skin beginning to feel soft and supple again (after a lifetime of rough and bumpy skin)? Everything still seemed to point to celiac disease. Could a gluten intolerance have the same affect on the small intestinal villi?
I believe that I was at my sickest in mid-January of this year—about a month after going g-free, and about two-and-a-half months after radically changing my diet. Originally thinking I had GERD, I had stripped my diet of all dairy products, fatty and/or fried foods, sugar, citrus, and acidic foods. Six weeks into the GERD diet, I further eliminated all gluten. A month later, I was suffering from congestive heart failure, and an almost nonexistent immune system. Could a radical change in dietary habits cause this type of strain on my heart? Is it normal to get sicker on a gluten-free diet before getting better?
Being a member of two different celiac disease support groups, I posed this same question to the members there and received a resounding YES! I was surprised by the number of people who experienced the same story, some of which had the exact same symptoms that I experienced. Coincidence? Maybe, but it is something to think about.
Also, still having issues with the Vitamin D (ergocalciferol) and its propensity to make me feel bloated and distended, I did some research and found that large doses of magnesium may be helpful until the distension passes (http://www.easy-immune-health.com/is-constipation-a-side-effect-of-vitamin-d-comments.html and www.ctds.info/magdiet.html), so I determined to ask the doctor about this during my follow-up appointment. Could I be slightly magnesium deficient? Toward the end of the week I resorted to the good ole’ fashioned milk of magnesia cure, which worked beautifully by the next morning.
My follow-up appointment with the internist went very well, and though he gave me the option of testing myself with small amounts of gluten, he stuck to his original diagnosis of celiac disease. There are just too many other factors that point to the disease (not discounting the possibility of a gluten intolerance), and the genetic tests are not the best diagnostic tool, which made sense to me.
He also told me that the Vitamin D capsule I’m taking is made from pig’s feet (the shell coating) and that I may be having difficulty digesting it, and that when I take the Vitamin D, I should cut it open and put it in applesauce. He also told me to take 600-800 mg Magnesium with it-- that high a dose because only about 10% is actually absorbed through OTC supplements.
ODD THINGS THIS WEEK:
- Random hives mostly on my fingers
- Inner trembling returned this week, though fairly mild.
- Pain under mandible off and on for a few days.
- While at dance performance, my right ear started aching. It was a generalized ache—one I at first mistook for the beginning of a headache. But it occurred later and was more distinctly in the right ear and not a headache. This has been happening every day since then. I hope it has nothing to do with the prosthesis. In the 21 years since the prosthesis was put in place, I have never had a problem with that ear.
So even though the road between sickness and health has been bumpy beyond belief at times, and sometimes the road nearly imperceptible, the rocks and potholes are gradually thinning out, and I am beginning to see more smooth pavement than gravel.
It is a good feeling.
Monday, April 19, 2010
Week 16 Recap: Celiac or Gluten Intolerant?
Well, it’s here! Summer has unofficially arrived in Montana after our usual 7 months of winter followed by 8 hours of spring. We may get hail storms from time to time through the summer, but I don’t expect any more snow until this fall. Yet, you know what they say in Montana, never say never!
On to last week’s recap in my adventures of going gluten free…
My follow-up with the GI specialist went very well. My blood pressure was 102/80 and my pulse was 76. I am not IgA deficient, so that is nice to know. There was no sign of cancer or any disease in my stomach and small intestine—only a small 3 mm hiatal hernia. She recommended that I stop taking Prilosec (omeprazole) in the evenings, and take it only in the mornings, half hour before breakfast. After a month or two, I am to reduce the Prilosec to every other day for a month or two, and then eventually stop taking it altogether. Additionally, the GI specialist also wants me to see a dermatologist for the DH (dermatitis herpetiformis) once the results of the genetic screen for celiac comes in.
ODD THINGS THIS WEEK:
The following quotes I found in the Winter 2009 edition of the online “Easy Eats” magazine (“Easy Eats: The magazine for gluten-free living”), and thought they were especially pertinent in my particular case:
Whatever the case—celiac or gluten intolerant—the treatment remains the same. The next question will be: is gluten intolerance inherited (should my kids be worried)?
On to last week’s recap in my adventures of going gluten free…
I am actually still in the process of determining whether I even have celiac disease or not. We are in the final throes of testing—the genetic screen has been sent to California to determine whether I have the gene for celiac or not. The results should arrive later this week. All other tests and biopsies at this point in time are normal.
My follow-up with the GI specialist went very well. My blood pressure was 102/80 and my pulse was 76. I am not IgA deficient, so that is nice to know. There was no sign of cancer or any disease in my stomach and small intestine—only a small 3 mm hiatal hernia. She recommended that I stop taking Prilosec (omeprazole) in the evenings, and take it only in the mornings, half hour before breakfast. After a month or two, I am to reduce the Prilosec to every other day for a month or two, and then eventually stop taking it altogether. Additionally, the GI specialist also wants me to see a dermatologist for the DH (dermatitis herpetiformis) once the results of the genetic screen for celiac comes in.
ODD THINGS THIS WEEK:
- Some twitching and slight thumping in chest, followed by slight pain to left of sternum as well as left subclavian and achy left arm.
- Very slight fluttering in chest several different times this week
- One morning, while eating my morning yogurt, my tongue started tingling. Not long after, my hands were feeling numb and flushed.
- Late in the week I experienced a painful double heart palpitation which caused me to cough, while sitting on my bed working on my laptop.
Though I can only speculate what my serology results and biopsies would have shown three or four months ago when I first suspected celiac disease, my current lab results are all completely within the normal range for everything.
The following quotes I found in the Winter 2009 edition of the online “Easy Eats” magazine (“Easy Eats: The magazine for gluten-free living”), and thought they were especially pertinent in my particular case:
“Celiac disease patients with lesser degrees of villous atrophy are less likely to have positive celiac serologies” (“Digestive Disturbances and Science,” 2004).
"Recent literature data showed that serology (not only EMA, but also anti-tTG) seems to be ineffective in detecting most patients affected by subclinical/silent disease" -- i.e., gluten sensitivity rather than celiac disease ("Digestive and Liver Disease," 2007).
"If eliminating gluten from your diet results in your body feeling better, that is a positive test" (Dr. Vikki Peterson, DC, CCN, Founder of HealthNOW Medical Center, 2009).
Whatever the case—celiac or gluten intolerant—the treatment remains the same. The next question will be: is gluten intolerance inherited (should my kids be worried)?
Sunday, April 18, 2010
Week 15 Recap: Still Learning
Did you know that most Yoplait Lite yogurts contain aspartame? I had been so busy looking for “GLUTEN FREE” on the labels I failed to notice the aspartame listed in the ingredients. I don’t react every time to aspartame, but suspect I am more sensitive to it now, than in the past.
I think I accidentally glutened myself over Easter weekend… one of those things that in retrospect I ask myself “What was I thinking?” I used distilled white vinegar in a recipe and think that may have done it. As to whether vinegar is safe or not, is debatable.
According to Gluten Free: The Celiac Site:
While according to Celiac.com and the Celiac Sprue Association (CSA):
I may have been reacting to something else, such as Hershey’s Kisses, but it sure felt like a gluten stomach-ache! Do achy joints have anything to do with being glutened?
The results to my EGD (endoscopy) last week came in, and both biopsies of the stomach and small intestine were normal. Yay! The doctor did not expect to find anything relating to celiac due to the time I’ve spent gluten-free (three months now), but there was also no sign of GERD (gastroesophageal reflux disease). This does not mean I don’t have reflux, it just means it hasn’t advanced to the stage of disease—so I guess I have caught it early enough, which is a good thing!
Besides waking up in the wee hours of the morning every single day and not getting enough sleep, the week was not a bad week. In fact, my treadmill walks were the best ever, feeling almost completely normal! For the first time in about eight weeks, my heart was feeling stronger and stronger—almost as if it has healed. I hope that is the case.
ODD THINGS THIS WEEK:
It is ironic that the more I learn about celiac disease and how my body reacts to gluten, the less I realize I know about celiac and my body! I am still learning, but it is a good learning. Because I can be somewhat stubborn and hard-headed, it may take a couple of times to get through my head, but getting through my head it is-- and hopefully sooner than later-- I will finally reach the "Level Two" step (Step 1 = Beginning self-management and Foundation; Step 2 = Intermediate self-management and Expansion; Step 3 = Advanced level self-management and Maintenance) (Celiac Sprue Assocation).
This second step of "rehabilitation" includes (CSA):
I think I accidentally glutened myself over Easter weekend… one of those things that in retrospect I ask myself “What was I thinking?” I used distilled white vinegar in a recipe and think that may have done it. As to whether vinegar is safe or not, is debatable.
According to Gluten Free: The Celiac Site:
“Distilled vinegar (or white vinegar) has been listed as unsafe for people with celiac disease by the major organizations in the United States, but not by organizations in any other countries. This position changed in 2001. The Gluten Intolerance Group® and the Celiac Disease Foundation now state that all vinegar (except malt vinegar) is safe for people with celiac disease to consume. The American Dietetic Association has also stated…that distilled vinegar is gluten free.”
While according to Celiac.com and the Celiac Sprue Association (CSA):
“Distilled vinegar, however, is still on the CSAs ‘Low Gluten Items to Avoid List.’ The CSA still maintains that distilled vinegar and alcohol are ‘questionable,’ even if there is no detectable gluten/gliadin in them, and even though the Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF) and the new guidelines from the American Dietetic Association (ADA) all include them on their safe lists . The CSA urges celiacs to ascertain the source of any questionable ingredients from their manufacturers.”
I may have been reacting to something else, such as Hershey’s Kisses, but it sure felt like a gluten stomach-ache! Do achy joints have anything to do with being glutened?
The results to my EGD (endoscopy) last week came in, and both biopsies of the stomach and small intestine were normal. Yay! The doctor did not expect to find anything relating to celiac due to the time I’ve spent gluten-free (three months now), but there was also no sign of GERD (gastroesophageal reflux disease). This does not mean I don’t have reflux, it just means it hasn’t advanced to the stage of disease—so I guess I have caught it early enough, which is a good thing!
Besides waking up in the wee hours of the morning every single day and not getting enough sleep, the week was not a bad week. In fact, my treadmill walks were the best ever, feeling almost completely normal! For the first time in about eight weeks, my heart was feeling stronger and stronger—almost as if it has healed. I hope that is the case.
ODD THINGS THIS WEEK:
- A little pain to the left of my sternum, off and on for a couple of days.
- Minor left subclavian pain, off and on all week.
- Tingling tongue, and upper lip, also!
- Strange hives on my knuckles during the week.
- Minor right subclavian pain for about three days.
- Weirds pangs under mandible again.
- Fluttery sensations in chest from time to time, particularly when not feeling well.
It is ironic that the more I learn about celiac disease and how my body reacts to gluten, the less I realize I know about celiac and my body! I am still learning, but it is a good learning. Because I can be somewhat stubborn and hard-headed, it may take a couple of times to get through my head, but getting through my head it is-- and hopefully sooner than later-- I will finally reach the "Level Two" step (Step 1 = Beginning self-management and Foundation; Step 2 = Intermediate self-management and Expansion; Step 3 = Advanced level self-management and Maintenance) (Celiac Sprue Assocation).
This second step of "rehabilitation" includes (CSA):
- Establishing an individual treatment plan
- Keeping a daily diary and recording all intake, amounts, and reactions
- Identifying and eliminating immune-response triggers
- Waiting 2-4 weeks before reintroducing new or questionable items.
- Expanding knowledge of CD/DH
Tuesday, April 6, 2010
Week 14 Recap: Finding "Normal"
This week I found out that our neighborhood has levels of PCE (the nasty carcinogen, tetrachloroethylene) higher than the state allows due to the laundromat leakage in 1989 about a block away, and have been wondering what this means for us... I've always believed this house was making us sick. I drink more water than anyone in this family and I drink it out of the tap. If PCE isn't in the water, is it in the ground? We’ve kept a vegetable garden for years! Our house was not one of the random houses tested, but it would be interesting to know.
In spite of some very minor setbacks with the EGD procedure and possibly with ergocalciferol, it was a good week.
Well, back to the recap:
I’m beginning to believe ergocalciferol (prescription dose Vitamin D) might be causing or contributing to what I call occasional “left subclavian” pain— pain that is in the general area below my left shoulder that tends to follow the left subclavian vein/artery. Sure enough, within a day of taking the ergocalciferol, this annoying and random pain was back. The good news is that it is not a long, sustained pain, but something that is just felt off and on throughout the day.On Wednesday morning I went in for the EGD (esopagogastroduodenoscopy), in which the doctor sent a scope down my esophagus and took a look around. At 8:30 in the morning, I was prepped and ready to go. My blood pressure at the time was 106/72, and I was hooked up to a saline IV solution. By 9:15 I was wheeled into the procedure room full of monitors and equipment.
The nurse told me she was going to inject some medicine into my IV that would make me sleepy, and then told me to lay on my left side. I proceeded to lay on my left and the next thing I remember, I was waking up in a completely different room, the procedure already completed. I was informed that the doctor had tried to talk to me but apparently I was still out cold. It doesn’t take much to knock me out, it just takes a bit to keep me there! I don’t have complete memory of laying on my left side, so I am sure somebody must have been there to catch me. We joked later about the medical staff taking bets to see how long till the patient hits the table. Somebody could have scored big on me!!
As it turns out, I have a “small hiatal hernia” and biopsies were taken from both the stomach and the duodenum (small intestine). I doubt anything will turn up regarding celiac disease since I have been gluten-free for three months (to the best of my knowledge and abilities).
After the procedure, I felt a bit woozy, but otherwise fine. I tried to sleep off the medication, but in a noisy house full of kids, telephones, and barking dogs, even a medicated sleep was impossible. Oh, how I would have loved to sleep! Once the medication finally did wear off I realized just how sore my throat, stomach, and small intestine actually were! To top it off, I had to deal with this achiness for about two more days, including the continual taste of blood in the back of my throat, and an unpleasant three-day flare-up of acid reflux.
The arrival of the weekend marked my next dose of ergocalciferol, and right on schedule, I felt the first definite heart palpitation I’d felt all week and a double palpitation later in the day. I was also experiencing left subclavian pain again off and on all day, just when the same pain earlier in the week had finally settled down. One other thing I noticed with the ergocalciferol is that for a day or two after taking it, my stomach will feel somewhat glutened and achey. I’ve been having doubts as to whether there isn’t some cross-contamination or small amount of gluten in the pill.
ODD THINGS DURING THE WEEK:- A headache enough to make me nauseous-- not so much when I sat down but whenever I stood-- both sides of the head.
- Left arm felt slightly numb, and the front of my left shoulder a little achy, and left hand tingling-- on two separate days during the week.
- Tongue began tingling again, late in the week.
- In the wee hours of one morning I woke up enough to feel a heavy trembling in my neck. I was too groggy to worry and noticed only that it was a very heavy trembling when compared any previous trembling I had felt. I fell back asleep almost immediately.
In spite of some very minor setbacks with the EGD procedure and possibly with ergocalciferol, it was a good week.
Wednesday, March 31, 2010
Week 13 Recap: Healing
Last week was a pretty good week, with most of my days in the 90th percentile. I continued my twice-daily treadmill walks, along with daily sessions of Pilates and weight-bearing exercises. I also continued to wait on the University of Washington Medical Center for the records regarding my stapedectomy 21 years ago. We cannot go forward with the MRI without knowing what kind of prosthesis is in my right ear.
Why were we interested in an MRI? Probably because there were times when my neck was feeling congested and achy, as if my arteries or veins were backed up or something. I could often look in the mirror (particularly in the evenings) and see about three inches my left carotid artery bulging outward and throbbing. This was somewhat disconcerting to my husband, who finally called the internist on-call one night, who told him that I should be seen, but it isn’t really an emergency unless it interferes with my breathing…. which it wasn’t. Regardless, the swelling went down with sleep and rest, but I ended up back at the doctor’s the next evening.
My doctor ordered a CT scan and angiogram, as well as a carotid ultrasound. He mentioned that I had a strong carotid “up-stroke” which I took to be good news.
On Thursday morning I went to the hospital for the carotid ultrasound and the CT scan/angiogram. The ultrasound technician said he could see nothing out of the ordinary, and then I went on to do the CT scan with the dye injection—and my, what an interesting sensation that turned out to be. The feeling of hot dye coursing rapidly through my veins made me feel something like a potato being cooked in a microwave. It was a good thing I have lots of orifices to let the steam to escape.
The follow-up appointment with my doctor the next day was very interesting. Turns out I have at least three (probably congenital) defects:
DOCTOR: “Wow, there’s a lot of wax in there… Want me to pull it out?”
ME: “I don’t know… Will it hurt?”
DOCTOR: “Probably…”
ME: “OK”
DOCTOR proceeds to remove a lot of earwax, which is indeed painful and I can feel myself pulling away from him. DOCTOR takes a look at ear canal again.
DOCTOR: “It does look really raw in there. That could be causing you some pain…. (pause)…. Wow, there’s still a lot of wax in there.”
I would have laughed but now my ear really hurt. “Are my tubes narrow?”
DOCTOR: “No.”
DOCTOR looks in my right hear (the one with the prosthesis) and says “Your right ear is fine. And by the way, your prosthesis is steel. Your records finally came in yesterday afternoon.”
I asked if that was MRI safe and he said (paraphrasing very much) “No, it’s not that it’s magnetic, but that it would cause it to vibrate, heating the metal up substantially, to the point where it could do considerable damage.”
So it’s no MRIs for me, ever. I should have a medical bracelet or something I suppose. I ended up with a prescription for ear drops to soften the wax and fight any infection.
The visit with my doctor wasn’t all bad. He did tell me my arteries have no plaque or buildup or narrowing, so that is good news-- at least above my heart. But I do wonder about clots still. Thanks to the ear drops, I had to go around with about half my normal hearing capacity, and my hearing wasn’t very good to begin with.
I thought I had some other good news to report during the week, but it turned out to be bogus. I had thought I wasn’t bruising as severely as I had in the past with needle punctures, but by the end of the week it looked like I had been in an arm wrestle with an octopus and I was definitely at the disadvantage.
ODD THINGS DURING THE WEEK:
So this was a healing week. I am hoping for many more in a row.
Why were we interested in an MRI? Probably because there were times when my neck was feeling congested and achy, as if my arteries or veins were backed up or something. I could often look in the mirror (particularly in the evenings) and see about three inches my left carotid artery bulging outward and throbbing. This was somewhat disconcerting to my husband, who finally called the internist on-call one night, who told him that I should be seen, but it isn’t really an emergency unless it interferes with my breathing…. which it wasn’t. Regardless, the swelling went down with sleep and rest, but I ended up back at the doctor’s the next evening.
My doctor ordered a CT scan and angiogram, as well as a carotid ultrasound. He mentioned that I had a strong carotid “up-stroke” which I took to be good news.
On Thursday morning I went to the hospital for the carotid ultrasound and the CT scan/angiogram. The ultrasound technician said he could see nothing out of the ordinary, and then I went on to do the CT scan with the dye injection—and my, what an interesting sensation that turned out to be. The feeling of hot dye coursing rapidly through my veins made me feel something like a potato being cooked in a microwave. It was a good thing I have lots of orifices to let the steam to escape.
The follow-up appointment with my doctor the next day was very interesting. Turns out I have at least three (probably congenital) defects:
- a gland in my left neck is shrunken or never grew (I think it was tonsular in nature)
- the left side of my chest is narrower than the right, which can sometimes cause problems with the left subclavian (which might explain the left subclavian pain I sometimes feel)
- and my right subclavian goes directly out of the aorta rather than the branch that comes out of the aorta (aberrant??).
DOCTOR: “Wow, there’s a lot of wax in there… Want me to pull it out?”
ME: “I don’t know… Will it hurt?”
DOCTOR: “Probably…”
ME: “OK”
DOCTOR proceeds to remove a lot of earwax, which is indeed painful and I can feel myself pulling away from him. DOCTOR takes a look at ear canal again.
DOCTOR: “It does look really raw in there. That could be causing you some pain…. (pause)…. Wow, there’s still a lot of wax in there.”
I would have laughed but now my ear really hurt. “Are my tubes narrow?”
DOCTOR: “No.”
DOCTOR looks in my right hear (the one with the prosthesis) and says “Your right ear is fine. And by the way, your prosthesis is steel. Your records finally came in yesterday afternoon.”
I asked if that was MRI safe and he said (paraphrasing very much) “No, it’s not that it’s magnetic, but that it would cause it to vibrate, heating the metal up substantially, to the point where it could do considerable damage.”
So it’s no MRIs for me, ever. I should have a medical bracelet or something I suppose. I ended up with a prescription for ear drops to soften the wax and fight any infection.
The visit with my doctor wasn’t all bad. He did tell me my arteries have no plaque or buildup or narrowing, so that is good news-- at least above my heart. But I do wonder about clots still. Thanks to the ear drops, I had to go around with about half my normal hearing capacity, and my hearing wasn’t very good to begin with.
I thought I had some other good news to report during the week, but it turned out to be bogus. I had thought I wasn’t bruising as severely as I had in the past with needle punctures, but by the end of the week it looked like I had been in an arm wrestle with an octopus and I was definitely at the disadvantage.
ODD THINGS DURING THE WEEK:
- Strange pain under mandible that hurt only when touched-- happened on a couple different days
- Was leaning forward to reach computer keyboard (leaning over my knee) and there were several thumps and pounding in my chest-- felt like at least a double palpitation, possibly a triple. Have found that leaning over my knee tends to do that for some reason, as if my chest is more sensitive to anything touching it. Maybe leaning on my knee blocks that subclavian artery for a second, or something. It is a common position for me (leaning over my knee) so not sure why it happens now and not in the past.
So this was a healing week. I am hoping for many more in a row.
Monday, March 22, 2010
Week 12 Recap: What Recap?
Recap, recap, what is there to recap? The new "Symptom of the Week"?
What can I say to spice things up a bit? Basically, the congestion in my chest has shifted up to my neck. I was hoping to find some answers this week with the scheduled MRI, but it never happened. The most frequent “new symptom” was feeling like I had the mumps on the left side: numb below the ear and an achy jaw, every single day.
I did have some good news this past week: the heart palpitations have calmed down considerably; and the other good news (though not such good news for my kids) -- my kids all got sick, but I didn’t —which is the first time in a long time. This could be the result of one of two scenarios: (1) my immune system is finally kicking in, or (2) they all had the swine flu for which I was inoculated late last fall. I’m putting my money on the stronger immune system.
I found a little bit of a pattern in the heart palpitations recently. It seems as though when my oxygen supply either runs short or gets backed up by a kink in the neck (just my guess) I end up with a palpitation—such as when craning my neck to see something, or when talking for a long enough period of time that I need to take a breath.
During the week, I continued to wean myself off of clonazepam (again) by taking smaller and smaller doses. I found this helps avoid the inevitable headaches and sleepless night when I stop suddenly.
I also continued my physical therapy, comprised of two 30-minute treadmill walks, 20 minutes of Pilates, and 10 minutes of weight-bearing exercises, for six days a week, though I did miss one or two Pilates sessions. I kept my treadmill walks slow so as to determine whether I could do it without any heart palpitations, and the results were pretty good —I felt only one palpitation during a treadmill walk all week. The only thing I had to deal with was some upper chest constriction (as if my lungs refused to fully inflate) and some chronic neck congestion, almost entirely on the left side.
Last week's total physical therapy consisted of: 80 minutes of Pilates, 50 minutes of weight-bearing exercises, and walking 17.19 miles.
ODD EVENTS DURING THE WEEK:
That very same day, I had a consultation with a GI specialist, who seemed rather perturbed that my doctor did not confirm my celiac disease with a small intestine biopsy. She accused him of making a lot of generalizations without confirming the disease, but also admitted he could be correct in the diagnosis. As for herself, she refused to call it celiac until something shows up in a biopsy (of which she said celiac likely won't show up now, having been g-free for three months), or I have the gene for it (which they will apparently do at the same time). So bottom line, I go in for an esophagogastroduodenoscopy (EGD) on March 31.
At the same time, this procedure can be used for:
With the EGD, the GI-specialist can look for things like:
Till next time...
What can I say to spice things up a bit? Basically, the congestion in my chest has shifted up to my neck. I was hoping to find some answers this week with the scheduled MRI, but it never happened. The most frequent “new symptom” was feeling like I had the mumps on the left side: numb below the ear and an achy jaw, every single day.
I did have some good news this past week: the heart palpitations have calmed down considerably; and the other good news (though not such good news for my kids) -- my kids all got sick, but I didn’t —which is the first time in a long time. This could be the result of one of two scenarios: (1) my immune system is finally kicking in, or (2) they all had the swine flu for which I was inoculated late last fall. I’m putting my money on the stronger immune system.
I found a little bit of a pattern in the heart palpitations recently. It seems as though when my oxygen supply either runs short or gets backed up by a kink in the neck (just my guess) I end up with a palpitation—such as when craning my neck to see something, or when talking for a long enough period of time that I need to take a breath.
During the week, I continued to wean myself off of clonazepam (again) by taking smaller and smaller doses. I found this helps avoid the inevitable headaches and sleepless night when I stop suddenly.
I also continued my physical therapy, comprised of two 30-minute treadmill walks, 20 minutes of Pilates, and 10 minutes of weight-bearing exercises, for six days a week, though I did miss one or two Pilates sessions. I kept my treadmill walks slow so as to determine whether I could do it without any heart palpitations, and the results were pretty good —I felt only one palpitation during a treadmill walk all week. The only thing I had to deal with was some upper chest constriction (as if my lungs refused to fully inflate) and some chronic neck congestion, almost entirely on the left side.
Last week's total physical therapy consisted of: 80 minutes of Pilates, 50 minutes of weight-bearing exercises, and walking 17.19 miles.
ODD EVENTS DURING THE WEEK:
- On one day, I ended up with a sudden bout of nausea and a weird feeling on the left side of my head. When I barely touched my head above my left ear, I felt pain sensations shoot out and upward.
- Another day I experienced some minor ringing in my left ear.
- Occasionally, my neck would throb in various areas, sometimes on the right side, but mostly on the left.
- My throat felt itchy and sore, and the right glands felt swollen.
- At least twice that week I awoke to a bloody taste in my mouth, and a lot of left-sided head and neck pain.
- One day I went to use my earbuds while on my treadmill but the left one kept shocking me for some reason, and created an earache in that ear. Decided to opt out of using earbuds while on the treadmill.
On the day that I was scheduled for the head/neck MRI, the hospital ran a CT scan first to determine the nature of the prosthetic in my right ear (having had a stapedectomy almost 20 years ago). Turns out, there was some kind of metal in the prosthesis, and the MRI could not be done. Now what? We faxed the University of Washington Medical Center for my records so we could get a brand and model number of the prosthesis, but the MRI would have to be rescheduled. I left feeling very disappointed because I still had no answers.
That very same day, I had a consultation with a GI specialist, who seemed rather perturbed that my doctor did not confirm my celiac disease with a small intestine biopsy. She accused him of making a lot of generalizations without confirming the disease, but also admitted he could be correct in the diagnosis. As for herself, she refused to call it celiac until something shows up in a biopsy (of which she said celiac likely won't show up now, having been g-free for three months), or I have the gene for it (which they will apparently do at the same time). So bottom line, I go in for an esophagogastroduodenoscopy (EGD) on March 31.
The EGD will look at my esophagus, stomach, and duodenum (first part of the small intestine) with an endoscope, which can also be used to biopsy different areas if necessary. According to SurgeryEncylopedia.com, it can be used:
"to diagnose early-stage cancer and can frequently help determine whether a growth is benign or malignant. The doctor can obtain biopsies of inflamed or suspicious tissue for examination in the laboratory by a pathologist or cytologist. Cell scrapings can also be taken by introducing a small brush through the endoscope; this technique is especially helpful in diagnosing cancer or an infection."
At the same time, this procedure can be used for:
- removal of polyps and other noncancerous (benign) tissue growths
- stretching narrowed areas (strictures) in the esophagus
- stopping bleeding from ulcers or blood vessels
- removing foreign objects that have been swallowed, such as coins, pins, buttons, small nails, and similar items
With the EGD, the GI-specialist can look for things like:
- causes of abdominal pain
- achalasia, a defect in the muscular opening between the esophagus and the stomach
- Barrett's esophagus, a precancerous condition of the cells lining the esophagus
- Crohn's disease and inflammatory disease of the small intestine
- esophageal cancer
- gastroesophageal reflux disease (GERD), a condition caused by excess stomach acid
- hiatal hernia
- irritable bowel syndrome
- rectal bleeding
- stomach cancer
- stomach ulcers
- swallowing problems
The only thing that worries me at this point is that I still have random heart palpitations and that we don't know what is going on in my head and neck. An EGD is contraindicated in patients who are at risk for heart complications or stroke (NIH), and in my mind, as long as we still don't know why I get random heart palpitations or whether I actually had a TIA or am at risk for a stroke (where was that MRI when I needed it?), there is some risk involved with the EGD. It may be a low risk, but without answers, to me it is still a risk. Better safe, than sorry, right? But I guess we won't know until the actual procedure.
Till next time...
Wednesday, March 17, 2010
Week 11 Recap: More Questions, but No Answers
Although this past week was better than the one before, it was still full of questions as new symptoms seemed to pop out of nowhere.
For example:
Can GERD cause spasms or trembling of the esophagus? If so, I finally realized the connection this past week. While still in bed on Sunday morning, I noticed that when I shifted positions, my esophagus would start trembling and then eventually settle down. It always happened on the same side on which I was laying. I wondered if a little stomach acid wasn’t leaking into my esophagus with the changing of positions. Was the trembling a reaction to that acid? Could this cause any kind of damage to the nerves?
And most importantly:
Why was this still happening on a strict g-free and GERD diet? The reflux was bad enough that I couldn’t eat because my stomach always felt full, and I spent most of the week with a constant knot under my sternum. I wondered if my esophagus wasn’t inflamed because it was so difficult to eat and drink.
I started out the week with my usual “physical therapy” which consisted of two 30-minute treadmill walks, about 20 minutes of Pilates, and about 10 minutes of basic weight-bearing exercises— six days a week….
...well, that was the plan, anyway...
Monday’s exercise was fine— in fact, almost too easy! The previous week I had difficulty keeping my heart rate down, and now all of a sudden, I couldn’t keep my heart rate up! Even the Pilates and weight-bearing exercises seemed suddenly easy. This made me happy because I felt like I finally cleared another hurdle and was getting stronger!
...But it didn’t last…
Tuesday started out fine, but I began to feel double and triple palpitations as opposed to a single random one here and there. Though multiple palpitations had happened in the past, this was the first time it had ever happened more than once in the same day! Additionally, while I was taking one of my kids to the middle school for band, I felt a pain in my upper left chest that rapidly branched out and then dissipated. It was weird.
Weirder still:
By late afternoon, the jaw behind my left ear began aching. During my second treadmill walk my heart rate was not very high but still felt like I couldn’t get enough air. I experienced a lot of congestion in my neck—as though someone’s hands were around my neck. Why were these double and triple palpitations happening and why did it feel like I couldn’t get a good breath? Will more happen like this?
That same night, we had company come for a short visit that and at about 9 o’clock I started to speak and couldn’t without stammering and stuttering. I couldn’t get my lips and tongue to shape the words I wanted to say. I have no idea what could have caused it but it seemed to clear up a little later—probably in less than a minute. Had I not tried to speak I would never have noticed! Trying to ignore the thoughts racing in the back of my head, I ended up taking a ½ clonazepam to settle myself down and go to sleep.
Medicated or not, I barely slept, and that was the story for the next couple of days. I resorted to one treadmill walk and no other exercise during that time because the heart palpitations seemed to occur much more frequently than before. Also, my neck still felt tight during the walks, even though I had slowed them down considerably, and my chest would ache for the rest of the day. The lumps and bumps in my neck seemed to ache (not my throat, just my neck) and felt tender. I went around with two knots all day: one at the base of my throat, and one on the top of my stomach.
I finally had to admit that Tuesday night’s inability to speak sounded suspiciously like a “mini stroke” or TIA (transient ischemic attack). I knew that a TIA could possibly lead to a full-blown stroke and determined I needed to see my doctor. My doctor performed a neurological evaluation and noticed that I have a “bent” carotid artery—the same left carotid artery that had been numb and tender most of the week. He ordered a head/neck MRI for the following week and told me to take an enteric-coated full-strength aspirin (325 mg) every day for now. I knew this was to help thin the blood (avoiding more clots), so as long as it didn’t irritate my stomach (hence the enteric-coating), I was fine with that. And still, on the way home, I experienced another double or triple palpitation, even though I was actually feeling pretty good. Why?
By the weekend, the GERD was not so bad and the constant knot seemed to die down. I slowly reduced the clonazepam throughout the week and hope not to need it again…. but it is there to get me through any more anxious nights.
I have my own theory as to why I might have blood clots floating around, but since I am not a doctor, it is just a lay-person's wild idea. Back when my heart wasn't doing so well (some kind of myocarditis or cardiomyopathy), my ejection fraction dropped to borderline low (55%). When the heart does not pump out efficiently (systolic), some of that blood can kind of "back up" so to speak-- and cause some clotting. With all my aerobic exercise since then, perhaps some of those clots have been breaking loose-- whereever they may be hidden. But that is just my wild-eyed-theory and probably far from reality.
Just the same, I experienced too many mysterious events this week and as usual it can be very frustrating. My hope is that we will have answers this new week with the MRI and a GI consultation on the same day.
Stay tuned…
For example:
Can GERD cause spasms or trembling of the esophagus? If so, I finally realized the connection this past week. While still in bed on Sunday morning, I noticed that when I shifted positions, my esophagus would start trembling and then eventually settle down. It always happened on the same side on which I was laying. I wondered if a little stomach acid wasn’t leaking into my esophagus with the changing of positions. Was the trembling a reaction to that acid? Could this cause any kind of damage to the nerves?
And most importantly:
Why was this still happening on a strict g-free and GERD diet? The reflux was bad enough that I couldn’t eat because my stomach always felt full, and I spent most of the week with a constant knot under my sternum. I wondered if my esophagus wasn’t inflamed because it was so difficult to eat and drink.
I started out the week with my usual “physical therapy” which consisted of two 30-minute treadmill walks, about 20 minutes of Pilates, and about 10 minutes of basic weight-bearing exercises— six days a week….
...well, that was the plan, anyway...
Monday’s exercise was fine— in fact, almost too easy! The previous week I had difficulty keeping my heart rate down, and now all of a sudden, I couldn’t keep my heart rate up! Even the Pilates and weight-bearing exercises seemed suddenly easy. This made me happy because I felt like I finally cleared another hurdle and was getting stronger!
...But it didn’t last…
Tuesday started out fine, but I began to feel double and triple palpitations as opposed to a single random one here and there. Though multiple palpitations had happened in the past, this was the first time it had ever happened more than once in the same day! Additionally, while I was taking one of my kids to the middle school for band, I felt a pain in my upper left chest that rapidly branched out and then dissipated. It was weird.
Weirder still:
By late afternoon, the jaw behind my left ear began aching. During my second treadmill walk my heart rate was not very high but still felt like I couldn’t get enough air. I experienced a lot of congestion in my neck—as though someone’s hands were around my neck. Why were these double and triple palpitations happening and why did it feel like I couldn’t get a good breath? Will more happen like this?
That same night, we had company come for a short visit that and at about 9 o’clock I started to speak and couldn’t without stammering and stuttering. I couldn’t get my lips and tongue to shape the words I wanted to say. I have no idea what could have caused it but it seemed to clear up a little later—probably in less than a minute. Had I not tried to speak I would never have noticed! Trying to ignore the thoughts racing in the back of my head, I ended up taking a ½ clonazepam to settle myself down and go to sleep.
Medicated or not, I barely slept, and that was the story for the next couple of days. I resorted to one treadmill walk and no other exercise during that time because the heart palpitations seemed to occur much more frequently than before. Also, my neck still felt tight during the walks, even though I had slowed them down considerably, and my chest would ache for the rest of the day. The lumps and bumps in my neck seemed to ache (not my throat, just my neck) and felt tender. I went around with two knots all day: one at the base of my throat, and one on the top of my stomach.
I finally had to admit that Tuesday night’s inability to speak sounded suspiciously like a “mini stroke” or TIA (transient ischemic attack). I knew that a TIA could possibly lead to a full-blown stroke and determined I needed to see my doctor. My doctor performed a neurological evaluation and noticed that I have a “bent” carotid artery—the same left carotid artery that had been numb and tender most of the week. He ordered a head/neck MRI for the following week and told me to take an enteric-coated full-strength aspirin (325 mg) every day for now. I knew this was to help thin the blood (avoiding more clots), so as long as it didn’t irritate my stomach (hence the enteric-coating), I was fine with that. And still, on the way home, I experienced another double or triple palpitation, even though I was actually feeling pretty good. Why?
By the weekend, the GERD was not so bad and the constant knot seemed to die down. I slowly reduced the clonazepam throughout the week and hope not to need it again…. but it is there to get me through any more anxious nights.
I have my own theory as to why I might have blood clots floating around, but since I am not a doctor, it is just a lay-person's wild idea. Back when my heart wasn't doing so well (some kind of myocarditis or cardiomyopathy), my ejection fraction dropped to borderline low (55%). When the heart does not pump out efficiently (systolic), some of that blood can kind of "back up" so to speak-- and cause some clotting. With all my aerobic exercise since then, perhaps some of those clots have been breaking loose-- whereever they may be hidden. But that is just my wild-eyed-theory and probably far from reality.
Just the same, I experienced too many mysterious events this week and as usual it can be very frustrating. My hope is that we will have answers this new week with the MRI and a GI consultation on the same day.
Stay tuned…
Monday, March 8, 2010
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!
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!
Thursday, March 4, 2010
Genetic links to celiac disease identified: Commentary
Well, I thought we had already established that celiac disease was genetic, but just a couple of days ago it was announced that according to London scientists, new genetic links to celiac disease have been discovered. An international team of researchers found close to “40 different inherited risk factors which predispose to the disease” (DNA India, boldface added).
We all know that genetics are pretty much entirely responsible for our physical makeup, but I find it interesting that there are so many risk factors that make celiac disease something for which we may be “predisposed.” Just the fact that there are so many millions of people around the world that have CD fascinates me, and it is relatively new disease, historically speaking… rumor even has it that it has something to do with the genetically modified super-gluten that has crept into almost all mainstream food products.
In her book "Harvest for Hope: A Guide to Mindful Eating", famed primatologist Jane Goodall said of genetically modified foods: "We simply do not know the long-term effects of genetically altering foods" (2006, p. 46). She also sadly pointed out that "The children of North America have now become the world's lab animals on whom to study the long-term effects of eating GM [genetically modified] products" (p. 62). We are predisposing ourselves, I often think.
The British-led team of medical researchers identified “four aspects of immune system disturbances that lead to the development of celiac disease” (United Press International).
Toxic wheat proteins…. I’m all for the advancement of science and particularly in medicine, but when our food supply becomes toxic to our own bodies (at least as our body sees it), it is time to stop tampering with what goes into our bodies and start focusing on preventative medicines and treatment, that are both natural and non-toxic, regardless of what levels the FDA deem safe.
It is good news that the scientific and medical communities are spending the time in research considering celiac disease is becoming so prevalent around the world. According to Reuters, these new findings may help “speed the search for better ways to diagnose and treat the gluten-intolerance disorder” (Reuters.com).
The bad news is that the “study also shows that there is substantial evidence to indicate a shared risk between the gene associated with coeliac disease and many other common chronic immune mediated diseases” including diseases such as type 1 diabetes and rheumatoid arthritis (DNA India, Reuters).
With my own research, I already know that CD is caused by an abnormal immune response to gluten, which can be found in wheat, rye, and barley products and can be hidden just about anywhere —from medicines and vitamins to lip balms and lipsticks. I know that the reaction causes damage to the lining of the small intestine, essentially flattening the villi, which are the tiny, hairlike projections that normally stand upright (mental image: a field of grass moving with the breeze). Each tiny little villi absorbs nutrients which then get absorbed into the blood stream. When the villi are flattened, the body can no longer properly absorb nutrients.... and you may never know it is happening until the damage has already been done.
You may be eating to your heart’s content, but as long as your body cannot receive nutrients on a cellular level, your body will be literally starving to death. This is why the disease affects so many organs and systems in the body—it affects your entire body. You may end up with weakened bones, anemia, chronic fatigue syndrome, weight loss or weight gain, or any one or combination of over 300 symptoms.
In simplest terms for me, gluten is the alien that created crop circles in my gut, substantially reducing my nutrient harvest. There is no cure for it and that the only treatment is a life-long diet free of gluten and avoiding all hidden sources of gluten. So I have CD. I live, and I move on. Do I miss all those bread products and over-processed snacks and addiction to sugar? Actually.... surpisingly, no. I don't. What's to miss? Horrible stomach pain, a weakened heart, failing organs and a reduced standard of health (i.e., living)?
I think not. Keep plugging away, researchers!
We all know that genetics are pretty much entirely responsible for our physical makeup, but I find it interesting that there are so many risk factors that make celiac disease something for which we may be “predisposed.” Just the fact that there are so many millions of people around the world that have CD fascinates me, and it is relatively new disease, historically speaking… rumor even has it that it has something to do with the genetically modified super-gluten that has crept into almost all mainstream food products.
In her book "Harvest for Hope: A Guide to Mindful Eating", famed primatologist Jane Goodall said of genetically modified foods: "We simply do not know the long-term effects of genetically altering foods" (2006, p. 46). She also sadly pointed out that "The children of North America have now become the world's lab animals on whom to study the long-term effects of eating GM [genetically modified] products" (p. 62). We are predisposing ourselves, I often think.
The British-led team of medical researchers identified “four aspects of immune system disturbances that lead to the development of celiac disease” (United Press International).
"We can now shed light on some of the precise immune disturbances leading to coeliac disease. These include how T cells in the body react to toxic wheat proteins, how the thymus gland eliminates these T cells during infancy, and the body's response to viral infections.
"We now understand that many of these genetic risk factors work by altering the amounts of these immune system genes that cells make.
"The data also suggests that coeliac disease is made up of hundreds of genetic risk factors, we can have a good guess at nearly half of the genetic risk at present" (Prof. David van Heel, professor of gastrointestinal genetics at Barts; DNA India; Nature Genetics journal, boldface added).
Toxic wheat proteins…. I’m all for the advancement of science and particularly in medicine, but when our food supply becomes toxic to our own bodies (at least as our body sees it), it is time to stop tampering with what goes into our bodies and start focusing on preventative medicines and treatment, that are both natural and non-toxic, regardless of what levels the FDA deem safe.
It is good news that the scientific and medical communities are spending the time in research considering celiac disease is becoming so prevalent around the world. According to Reuters, these new findings may help “speed the search for better ways to diagnose and treat the gluten-intolerance disorder” (Reuters.com).
The bad news is that the “study also shows that there is substantial evidence to indicate a shared risk between the gene associated with coeliac disease and many other common chronic immune mediated diseases” including diseases such as type 1 diabetes and rheumatoid arthritis (DNA India, Reuters).
With my own research, I already know that CD is caused by an abnormal immune response to gluten, which can be found in wheat, rye, and barley products and can be hidden just about anywhere —from medicines and vitamins to lip balms and lipsticks. I know that the reaction causes damage to the lining of the small intestine, essentially flattening the villi, which are the tiny, hairlike projections that normally stand upright (mental image: a field of grass moving with the breeze). Each tiny little villi absorbs nutrients which then get absorbed into the blood stream. When the villi are flattened, the body can no longer properly absorb nutrients.... and you may never know it is happening until the damage has already been done.
You may be eating to your heart’s content, but as long as your body cannot receive nutrients on a cellular level, your body will be literally starving to death. This is why the disease affects so many organs and systems in the body—it affects your entire body. You may end up with weakened bones, anemia, chronic fatigue syndrome, weight loss or weight gain, or any one or combination of over 300 symptoms.
In simplest terms for me, gluten is the alien that created crop circles in my gut, substantially reducing my nutrient harvest. There is no cure for it and that the only treatment is a life-long diet free of gluten and avoiding all hidden sources of gluten. So I have CD. I live, and I move on. Do I miss all those bread products and over-processed snacks and addiction to sugar? Actually.... surpisingly, no. I don't. What's to miss? Horrible stomach pain, a weakened heart, failing organs and a reduced standard of health (i.e., living)?
I think not. Keep plugging away, researchers!
Tuesday, March 2, 2010
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:
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.
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.
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.
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!
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