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no sign of celiac was found in the biopsies but she was not really expecting anything to be found because the rash was no longer active—just old, chronically scratched skin-- not dermatitis herpetiformis.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 Dermatitis Herpetiformis. Show all posts
Showing posts with label Dermatitis Herpetiformis. 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)?
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!
Monday, February 8, 2010
Week 6 Recap: Missing the Hurdle
Just when I thought I was over one hurdle, the next one came up and I missed it completely. Two days into the new week, I caught a cold and my feeling good days suddenly vanished and turned into feeling sick and miserable days.
I still cannot help but wonder about my diagnosis because it all seems so strange. I will fail the blood tests for celiac, but have the Dermatitis Herpetiformis associated with the disease. Though it is true that my digestive system feels better being off gluten, couldn’t that also be true of most people who eliminate gluten from their diets?
Additionally, I thought perhaps we had caught the celiac disease early on, thinking maybe there just wasn’t enough damage done to my intestines to show up anywhere. But on the other hand, I have osteopenia—a thinning of the bones. And though my cholesterol numbers and blood pressure seem fine (bp 104/78 at my last doctor visit), my heart has an ejection fraction (EF) of 55%, which is borderline low—indicating some kind of previous damage.
When I questioned the doctor about the damage done to my heart, he suggested that it may be a result of myocarditis or cardiomyopathy, yet he sees my EF as a good sign because it may well be on its way up, as opposed to a couple months ago when I was at my sickest. He also suggested that with continued exercise and a gluten-free diet, my EF should rise to normal again, though it may take some time.
It is clear that whatever is making me ill is not finished— my immune system seems greatly compromised. I no sooner feel better then I feel sick again! The good news: last week was the longest stretch of good days I have had in three months. The bad news: what if it is not celiac at all? What if we are missing the mark and all this time is going by and I am getting worse? My instinct says we are on the right track with the celiac, but my instinct also tells me that we don’t have enough of the pieces to finish the puzzle.
Something— whether it is celiac-related or not— is taxing my body to no end. My bones, my heart, my kidneys… So many times I have been discouraged because it seems like I can’t work on the puzzle because I can’t see the whole picture. I often feel like I won’t ever completely heal until all the puzzle pieces are there and I can see the picture. And then I found this quote yesterday by Tyler Fick, a beautiful young woman who lost her battle with Cystic Fibrosis at the age of 22:
Okay life, watch out! I may be down, but I’m not out for the count yet! Let's keep working on this puzzle so that I can begin to heal completely.
I still cannot help but wonder about my diagnosis because it all seems so strange. I will fail the blood tests for celiac, but have the Dermatitis Herpetiformis associated with the disease. Though it is true that my digestive system feels better being off gluten, couldn’t that also be true of most people who eliminate gluten from their diets?
Additionally, I thought perhaps we had caught the celiac disease early on, thinking maybe there just wasn’t enough damage done to my intestines to show up anywhere. But on the other hand, I have osteopenia—a thinning of the bones. And though my cholesterol numbers and blood pressure seem fine (bp 104/78 at my last doctor visit), my heart has an ejection fraction (EF) of 55%, which is borderline low—indicating some kind of previous damage.
When I questioned the doctor about the damage done to my heart, he suggested that it may be a result of myocarditis or cardiomyopathy, yet he sees my EF as a good sign because it may well be on its way up, as opposed to a couple months ago when I was at my sickest. He also suggested that with continued exercise and a gluten-free diet, my EF should rise to normal again, though it may take some time.
Was my barely-noticeable celiac so bad that it could do this kind of damage to my heart?
It is clear that whatever is making me ill is not finished— my immune system seems greatly compromised. I no sooner feel better then I feel sick again! The good news: last week was the longest stretch of good days I have had in three months. The bad news: what if it is not celiac at all? What if we are missing the mark and all this time is going by and I am getting worse? My instinct says we are on the right track with the celiac, but my instinct also tells me that we don’t have enough of the pieces to finish the puzzle.
Something— whether it is celiac-related or not— is taxing my body to no end. My bones, my heart, my kidneys… So many times I have been discouraged because it seems like I can’t work on the puzzle because I can’t see the whole picture. I often feel like I won’t ever completely heal until all the puzzle pieces are there and I can see the picture. And then I found this quote yesterday by Tyler Fick, a beautiful young woman who lost her battle with Cystic Fibrosis at the age of 22:
“Do not accept failure in your life. When life gets hard, get hard on life. Never feel sorry for yourself” (http://www.tylerfick.org/).
Okay life, watch out! I may be down, but I’m not out for the count yet! Let's keep working on this puzzle so that I can begin to heal completely.
Friday, January 29, 2010
Celiac, IgA, and Dermatitis Herpetiformis
Having been down the road of testing, waiting for results, and then not fully understanding the results and their implications, I thought I might try to clear something up -- particularly with regard to my own diagnosis of celiac disease.
There are several standard tests that should be performed as part of a celiac panel. First, serology tests look for three antibodies that are usually found in celiac patients and should ideally be done at the same time. These tests include:
The NDDIK (National Institute of Diabetes and Digestive and Kidney Diseases) and NIH (National Institute of Health) states:
In my personal case, I went gluten-free for almost a week before I could get into the clinic to talk to anybody about my idea of the posssibility that gluten might be making me sick. Armed with information printed from the NIDDK and NIH, I saw a nurse practitioner, she read the information, and told me to go back on gluten for the weekend and then we would take the tTG Antibody test because it was supposed to have a success rate of 95%. Afterall, "tTG is released from the damaged intestine during active celiac disease, and antibodies to TTG are found to be elevated in the blood of most patients with untreated celiac disease" (Dr. Sheila Crowe, New York Times, Jan. 12, 2010).
The EMA test listed above isn't as sensitive as the tTG, but it is highly speicific for celiac, with close to a 100% accuracy. Many medical providers don't always choose this test because it is more expensive and time-consuming and is also subject to interpretation by whoever is reading the results. Additionally, when combined with the results of a tTG, people with a milder case of celiac may go unnoticed. Regardless, I never received this test.
The AGA test is not normally used because it just doesn't seem to be as sensitive or specific enough to used routinely but come in handy for very small children and babies who might otherwise end up with false negative results with the other tests.
Genetic testing is another way to identify specific genes which may determine your likelihood of having celiac, whether you are exhibiting any symptoms or not. It is widely accepted that those people with celiac have the genetic material or human leukocyte antigen (HLA) or something called HLA-DQ2 or HLA-DQ8. The complicated part is that almost half of all Americans will have this in common and not necessarily have celiac disease (NIDDK). So it would have to be used in conjunction with other tests, particularly if a family member has been diagnosed with celiac and you want to know if you might end up with it sooner or later.
Well, the tests mentioned above are certainly not the end of the story. I failed the tTG Antibody test. My results showed < 1.2 while the standard for diagnosis is 4 or greater. Naturally, in a test with such high rate of accuracy, I assumed I must not have celiac disease and maybe I was just gluten intolerent. I was wrong to make that assumption, and several medical providers continued to tell me the same thing. I should have had the whole panel of tests done, not just the one, and I should not have stopped eating gluten before approaching the clinic with my self-diagnosis. At the time, I was just so happy to be feeling better-- and coupled with my own ignorance, I really didn't care. I was feeling better, and that's all that mattered at the time! But alas, I am not a medical professional, and didn't know any better.
So why was my tTG negative? I don't know what second test was used during my last visit to the ER but the doctor mentioned it would show antibodies for celiac if I had it, and it, too, was negative. Of course, I had been gluten free for quite a while when the blood was drawn, so it didn't surprise me that it might be negative. The ER doctor told me that because my symptoms were cross-organ and cross-systems in the body, that the brain was calling the shots and I was probably just anxious. That was at the tail end of my frustration, for lack of a nicer term...
There is something called IgA Deficiciency (Immunoglobulin Antibodies), and somewhere "between 2 and 3 percent of celiac patients have selective IgA deficiency" (NIDDK), and if the tTG or EMA are negative but celiac still likely, then the IgA levels should be measured. Mine never were tested.
So what is Selective IgA Deficiency? If you are deficient in IgA, then you are deficient in immunoglobulin antibodies. The "anti-self" anitobodies are anti-endomysial and anti-tissue transglutaminase IgA (American Celiac.org)-- the latter is usually abbreviated tTG. Mine was negative, or "normal" which I took to mean that I didn't have celiac, right? Wrong.
According to Immune Disease.com:
Just because you may not be producing enough IgA, however, does not mean your body is falling apart and you're not producing others to help your body function. In fact, that is why they call is "Selective IgA Deficiency." Nobody really knows why or how IgA deficiency happens, but it can be quite common.
So what does IgA deficincy have to do with me? Well, it could be one reason why my blood tests were normal, and it could also explain my susceptability to respiratory infections which have plagued me most of my life-- everything from chronic allergies, sinusitis, bronchitis, ear infections (as a child), and pneumonia.
Though I have not experienced food allergies that I know of (knock on wood), food allergies are also associated with IgA deficiencies.
Well, it certainly wouldn't surprise me!!
Another aspect of IgA deficiency includes gastrointestinal infections and chronic diarrhea which I did not experience, at least not enough for me to notice. These illnesses occur because IgA protects the mucosal surfaces, and so without it, we become much more susceptible to infection, and in turn, longer periods of antibiotic treatments, which I still immensely disklike.
So how do you diagnose IgA Deficiency? Well, if you have any of the symptoms I have discussed above, you are probably a candidate for testing-- with or without a celiac disease diagnosis. The test is done through a blood sample, and is often done with a complete blood count (CBC), measurement of lung function, and a urinaylsis (Immune Disease.com):
Currently, there really isn't any treatment for low IgA, but in my case, it might just help to answer a few more questions. If I get an infection (kidney or otherwise), I take appropriate antibiotics, whether I like it or not. If I don't repond well to the antibiotic (which I apparently don't always), there is the alternate possibility of "replacement gamma globulin" (Immune Diseases.com).
During this research I also learned why my allergy shots I took for so many years didn't work. According to the Immune Disease website, "It is not known whether immunotherapy (allergy shots) is helpful in the allergies associated with Selective IgA Deficiency, although there is no evidence of any increased risk associated with this therapy in these patients." Hmmm....
What to do about an IgA Deficiency? Stay in touch with your doctor. You don't want to end up with problems later down the road for something else that crops up due to a low or non-existent IgA. It could even progress to something called Common Variable Immunodeficiency, which in part, according to the Merck Manual, sounds suspiciously like celiac diease.
The moral of my story this time is that the IgA Deficiency may have led these high-accuracy tests to yield false negative results which is one of the reasons why that test should not be performed alone, such as was mine. Additionally, a person has to be eating a lot of gluten (not just a little or some, but a lot) at the time the test is performed. The "weekend" that I added gluten back into my diet was not a gluten-filled weekend. In fact, I was eating minimal amounts because it was a Christmas week ahead and there were many recitals and things I needed to attend to and did not want to be sick to my stomach during that week. I felt if I ate a couple of pieces of bread, I was okay. Again, in my own ignorance, I was wrong. Also, if there has been less damage to the small intestine (a lesser degree of villous atrophy), the test may be negative.
And what does all this have to do with dermatitis herpetiformis? I never had the small intestinal biopsy because I have dermatitis herpetiformis. According to the New York Times and Dr. Sheila Crowe (a professor in the division of gastroenterology and hepatology in the department of medicine at the University of Virginia), the "exception to this rule occurs when a patient has a skin condition known as dermatitis herpetiformis, in which case a characteristically abnormal skin biopsy result can subsitute for checking intestinal biopsies" (New York Times). This was also confirmed by my doctor, who has been the most helpful in diciphering all the clues and helping me understand my diagnosis.
So I don't know if I am actually IgA deficient, but it sounds like it might be a good thing to know, particularly in the long run. It does raise another question for me which I can probably answer myself: Would an IgA Deficiency improve with a gluten-free diet? My answer: probably not.
There are several standard tests that should be performed as part of a celiac panel. First, serology tests look for three antibodies that are usually found in celiac patients and should ideally be done at the same time. These tests include:
- anti-tissue transglutaminase (tTG) antibodies
- endomysial antibodies (EMA)
- antigliadin antibodies (AGA)
The NDDIK (National Institute of Diabetes and Digestive and Kidney Diseases) and NIH (National Institute of Health) states:
"The most sensitive antibody tests are of the immunoglobulin A (IgA) class, but immunoglobulin G (IgG) tests may be used in patients with IgA deficiency. Because no one serologic test is ideal, panels are often used. However, the tests included in a celiac panel vary by lab and may include one or more that are unwarranted. The American Gastroenterological Association recommends beginning with tTG in the clinical setting."
In my personal case, I went gluten-free for almost a week before I could get into the clinic to talk to anybody about my idea of the posssibility that gluten might be making me sick. Armed with information printed from the NIDDK and NIH, I saw a nurse practitioner, she read the information, and told me to go back on gluten for the weekend and then we would take the tTG Antibody test because it was supposed to have a success rate of 95%. Afterall, "tTG is released from the damaged intestine during active celiac disease, and antibodies to TTG are found to be elevated in the blood of most patients with untreated celiac disease" (Dr. Sheila Crowe, New York Times, Jan. 12, 2010).
The EMA test listed above isn't as sensitive as the tTG, but it is highly speicific for celiac, with close to a 100% accuracy. Many medical providers don't always choose this test because it is more expensive and time-consuming and is also subject to interpretation by whoever is reading the results. Additionally, when combined with the results of a tTG, people with a milder case of celiac may go unnoticed. Regardless, I never received this test.
The AGA test is not normally used because it just doesn't seem to be as sensitive or specific enough to used routinely but come in handy for very small children and babies who might otherwise end up with false negative results with the other tests.
Genetic testing is another way to identify specific genes which may determine your likelihood of having celiac, whether you are exhibiting any symptoms or not. It is widely accepted that those people with celiac have the genetic material or human leukocyte antigen (HLA) or something called HLA-DQ2 or HLA-DQ8. The complicated part is that almost half of all Americans will have this in common and not necessarily have celiac disease (NIDDK). So it would have to be used in conjunction with other tests, particularly if a family member has been diagnosed with celiac and you want to know if you might end up with it sooner or later.
Well, the tests mentioned above are certainly not the end of the story. I failed the tTG Antibody test. My results showed < 1.2 while the standard for diagnosis is 4 or greater. Naturally, in a test with such high rate of accuracy, I assumed I must not have celiac disease and maybe I was just gluten intolerent. I was wrong to make that assumption, and several medical providers continued to tell me the same thing. I should have had the whole panel of tests done, not just the one, and I should not have stopped eating gluten before approaching the clinic with my self-diagnosis. At the time, I was just so happy to be feeling better-- and coupled with my own ignorance, I really didn't care. I was feeling better, and that's all that mattered at the time! But alas, I am not a medical professional, and didn't know any better.
So why was my tTG negative? I don't know what second test was used during my last visit to the ER but the doctor mentioned it would show antibodies for celiac if I had it, and it, too, was negative. Of course, I had been gluten free for quite a while when the blood was drawn, so it didn't surprise me that it might be negative. The ER doctor told me that because my symptoms were cross-organ and cross-systems in the body, that the brain was calling the shots and I was probably just anxious. That was at the tail end of my frustration, for lack of a nicer term...
There is something called IgA Deficiciency (Immunoglobulin Antibodies), and somewhere "between 2 and 3 percent of celiac patients have selective IgA deficiency" (NIDDK), and if the tTG or EMA are negative but celiac still likely, then the IgA levels should be measured. Mine never were tested.
So what is Selective IgA Deficiency? If you are deficient in IgA, then you are deficient in immunoglobulin antibodies. The "anti-self" anitobodies are anti-endomysial and anti-tissue transglutaminase IgA (American Celiac.org)-- the latter is usually abbreviated tTG. Mine was negative, or "normal" which I took to mean that I didn't have celiac, right? Wrong.
"To help prevent false negatives, most laboratories will measure the total IgA level at the same time as the TTG IgA level. If you are IgA deficient, then your total IgA level will be very low, and that means there’s a very good chance that the TTG IgA test will be inaccurate (falsely low or normal) because you can’t make IgA antibodies to TTG or gliadin. In this case, your doctor will need to proceed to intestinal biopsies to confirm the suspicion of celiac disease. Occasionally your doctor may order other blood tests, such as TTG IgG or DGP IgG, if they are available" (Crowe, NYT)
According to Immune Disease.com:
"IgA antibodies are transported in secretions to mucosal surfaces and play a major role in protecting these surfaces from infection. Other immunoglobulin classes are also found in secretions at mucosal surfaces, but not in nearly the same amount as IgA. This is why IgA is known as the secretory antibody. If our mucosal surfaces were spread out they would cover an area equal to one and one-half tennis courts, so the importance of IgA in protecting our mucosal surfaces cannot be overstated."
Just because you may not be producing enough IgA, however, does not mean your body is falling apart and you're not producing others to help your body function. In fact, that is why they call is "Selective IgA Deficiency." Nobody really knows why or how IgA deficiency happens, but it can be quite common.
So what does IgA deficincy have to do with me? Well, it could be one reason why my blood tests were normal, and it could also explain my susceptability to respiratory infections which have plagued me most of my life-- everything from chronic allergies, sinusitis, bronchitis, ear infections (as a child), and pneumonia.
"Studies have indicated that as many as one in every five hundred people have Selective IgA Deficiency. Many of these individuals appear healthy, or have relatively mild illnesses and are generally not sick enough to be seen by a doctor and may never be discovered to have IgA deficiency" (Immune Disease.com), but is "much more common in those with celiac disease" (Crowe, NYT).
Though I have not experienced food allergies that I know of (knock on wood), food allergies are also associated with IgA deficiencies.
"Symptoms associated with food allergies are diarrhea or abdominal cramping. It is not certain whether there is an increased incidence of allergic rhinitis (hay fever) or eczema in Selective IgA Deficiency" (Immune Disease.com)
Well, it certainly wouldn't surprise me!!
Another aspect of IgA deficiency includes gastrointestinal infections and chronic diarrhea which I did not experience, at least not enough for me to notice. These illnesses occur because IgA protects the mucosal surfaces, and so without it, we become much more susceptible to infection, and in turn, longer periods of antibiotic treatments, which I still immensely disklike.
So how do you diagnose IgA Deficiency? Well, if you have any of the symptoms I have discussed above, you are probably a candidate for testing-- with or without a celiac disease diagnosis. The test is done through a blood sample, and is often done with a complete blood count (CBC), measurement of lung function, and a urinaylsis (Immune Disease.com):
"Other tests that may be obtained in specific patients include measurement of thyroid function, measurement of kidney function, measurements of absorption of nutrients by the GI tract, and the test for antibodies directed against the body’s own tissues (autoantibodies)."
Currently, there really isn't any treatment for low IgA, but in my case, it might just help to answer a few more questions. If I get an infection (kidney or otherwise), I take appropriate antibiotics, whether I like it or not. If I don't repond well to the antibiotic (which I apparently don't always), there is the alternate possibility of "replacement gamma globulin" (Immune Diseases.com).
During this research I also learned why my allergy shots I took for so many years didn't work. According to the Immune Disease website, "It is not known whether immunotherapy (allergy shots) is helpful in the allergies associated with Selective IgA Deficiency, although there is no evidence of any increased risk associated with this therapy in these patients." Hmmm....
What to do about an IgA Deficiency? Stay in touch with your doctor. You don't want to end up with problems later down the road for something else that crops up due to a low or non-existent IgA. It could even progress to something called Common Variable Immunodeficiency, which in part, according to the Merck Manual, sounds suspiciously like celiac diease.
The moral of my story this time is that the IgA Deficiency may have led these high-accuracy tests to yield false negative results which is one of the reasons why that test should not be performed alone, such as was mine. Additionally, a person has to be eating a lot of gluten (not just a little or some, but a lot) at the time the test is performed. The "weekend" that I added gluten back into my diet was not a gluten-filled weekend. In fact, I was eating minimal amounts because it was a Christmas week ahead and there were many recitals and things I needed to attend to and did not want to be sick to my stomach during that week. I felt if I ate a couple of pieces of bread, I was okay. Again, in my own ignorance, I was wrong. Also, if there has been less damage to the small intestine (a lesser degree of villous atrophy), the test may be negative.
And what does all this have to do with dermatitis herpetiformis? I never had the small intestinal biopsy because I have dermatitis herpetiformis. According to the New York Times and Dr. Sheila Crowe (a professor in the division of gastroenterology and hepatology in the department of medicine at the University of Virginia), the "exception to this rule occurs when a patient has a skin condition known as dermatitis herpetiformis, in which case a characteristically abnormal skin biopsy result can subsitute for checking intestinal biopsies" (New York Times). This was also confirmed by my doctor, who has been the most helpful in diciphering all the clues and helping me understand my diagnosis.
So I don't know if I am actually IgA deficient, but it sounds like it might be a good thing to know, particularly in the long run. It does raise another question for me which I can probably answer myself: Would an IgA Deficiency improve with a gluten-free diet? My answer: probably not.
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