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no sign of celiac was found in the biopsies but she was not really expecting anything to be found because the rash was no longer active—just old, chronically scratched skin-- not dermatitis herpetiformis.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!
Showing posts with label biopsy. Show all posts
Showing posts with label biopsy. Show all posts
Tuesday, June 29, 2010
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.
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)?
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.
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...
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