Though the week started off with some residual back pain, it wasn’t too bad a week. In fact, I found a name for one of the mysterious “symptoms” I’d been having off and on through most of my life: silent reflux (as explained in a previous post).
For four days I couldn’t figure out why I felt like reflux was going up into my neck and attaching itself to my voice box. I was also salivating more, and developed a post-nasal drip without any apparent reason. Someone in one of my celiac support groups mentioned that she had “silent reflux” and when I looked it up, there were all my symptoms!
Well, now that I understood what was bothering me, I tried to look back at what I had eaten during the past four days—because my diet was mostly a GERD diet anyway: no fatty/fried foods; no sugary foods; no chocolate; no caffeine; no acidic foods; no tight clothing; no laying down after eating, etc. The only thing I could find in my food journal (that’s right, I have learned to keep one) were about 3 or 4 Kettle chips (g-free, of course, and low-fat) every day during that time.
Obviously, my body wasn’t healed enough to handle those chips, yet! So I did the reasonable thing, and stopped eating the chips… I also learned that I should be taking the omegprazole (Prilosec), and so started that regimen up again during the middle of the week. Once I started the Prilosec, I have to say, my days began to improve: maybe it was coincidence, maybe not; maybe it was because I simply wasn't eating those chips-- even though they were in very small amounts.
Also during the week, I continued my exercise regimen of two 30-minute treadmill walks (six days a week); a 20-minute Pilates workout (five days a week); and 10 minutes of weight bearing exercises (using a Pilates machine, five days a week).
Each 30 minute treadmill walk started out with a 5-minute warm-up walk and ended with a 5-minute cool-down walk, and for those 20 minutes in between I tried to keep my heart rate as near my target heart rate (as suggested by my doctor) as possible. I started out the week walking 2.744 miles in a day, and ended the week walking 3.003 miles in a day. That is 17.35 miles total (of course, this does not count the daily run-around and errands throughout the day); 100 minutes of Pilates; and 50 minutes of weight-bearing exercises. So I feel this week was very successful in strengthening my heart and my core muscles. The best part: almost no heart palpitations this week, and that is a great feeling!!
Also, this week marked the beginning of a new class which I must take or my financial aid will be revoked. I was supposed to take two classes this time, but because of my health, I postponed that double-up (my final two classes) until the next term. I have been lucky enough to keep my GPA high (3.98)—which may be as high as I can get it, thanks to one A- a few years ago. Amazing how one little A- can affect your GPA. Regardless, I will be graduating summa cum laude, and that is a nice feeling.
The only drawback to this week was that I had to resort to clonazepam almost every night to help me sleep through the bouts of silent reflux, or symptoms that feel like hypoglycemia. Yet, all in all, by the end of the week, my days were very good—and back in the 90% range, which is a very good feeling.
Monday, February 22, 2010
Saturday, February 20, 2010
"Sugar and gluten are like squirting gasoline..."
I received a message through a Yahoo celiac support group called Silly Yaks, and thought it was so interesting, I got permission from the author to post it here on my blog:
I found the analogy so interesting, I just had to share. Thank you, Michael, for attending the meeting and for sharing this information! There are people with celiac disease who can handle small amounts of gluten with no apparent adverse effects, and yet it still does internal damage all the way into the cellular level.... something to think about!
The following websites are highly recommended:
Sueson Vess's website: http://www.specialeats.com/
Dr. Tom O'Bryan's website: http://www.thedr.com/
Nancy Appleton's article: www.rheumatic.org/sugar.htm
Last night I attended the Wheaton Gluten-Free Support Group meeting, with Sueson, our fearless leader and Dr. Tom O'Bryan lecturing on "Inflammation: Sources and Solutions". The big surprise is that they took aim at sugar. Sueson said that "Sugar feeds cancer. For a PET scan, you have to eliminate all sugar for 24 hours. Then they inject you with nuclear sugar. It all goes to the cancer." She cited http://rheumatic.org/sugar.htm
Dr. O'Bryan said "Sugar is an inflamatory compound...Every disease is an inflammatory disease." He talked about trying to light charcoals, and the experience of having to lay a lit match on the already lighter fluid soaked coals, and squirting more fluid on the coals around the match, and having the splashed droplets of fluid hitting the match, and finally getting the charcoal to light. He asked "What would happen if you squirted gasoline on the coals with the lit match on them? Sugar and gluten are like squirting gasoline...Inflammation is the mechanism of all degenerative disease, at the cellular level."
He clarified a statement he made in October: Celiac "blood tests are only accurate when you have total villous atrophy. Otherwise they are wrong 7 out of 10 times." (Michael)
I found the analogy so interesting, I just had to share. Thank you, Michael, for attending the meeting and for sharing this information! There are people with celiac disease who can handle small amounts of gluten with no apparent adverse effects, and yet it still does internal damage all the way into the cellular level.... something to think about!
The webpage on sugar is mindblowing, even to me (I've been sugar-free, starch-free, alcohol-free, caffeine-free since hypoglycemia diagnosos in 1980) showing it to be the cause of so many cancers. Sueson really emphasized to women the necessity to eliminate sugar, citing reasons #9 and #92 from Nancy Appleton's "146 Reasons Why Sugar Is Ruining Your Health" (Michael)
The following websites are highly recommended:
Sueson Vess's website: http://www.specialeats.com/
Dr. Tom O'Bryan's website: http://www.thedr.com/
Nancy Appleton's article: www.rheumatic.org/sugar.htm
Friday, February 19, 2010
Laryngopharnygeal Reflux (Silent Reflux)
I learned something new yesterday from one of the celiac support groups of which I am a member. There is something called Silent Reflux!
For several days, I had been experiencing something like acid reflux, but it seemed to get stuck inside my throat. It was a very uncomfortable feeling and made my glands and voice box feel swollen.
I couldn't understand it. So I followed all the guidelines for GERD (no acidic foods, no laying down after eating for several hours, no drinking caffeinated beverages, avoided fatty and fried foods, sugary foods, chocolate) -- and it seemed to make no difference what I ate, or what time of day I ate.
According to the MidWest EN&T, “many people with LPR never have heartburn” (italics added) and because it is so “silent,” it can be difficult to diagnose. For people who have had it in the past without realizing it, we don’t feel the heartburn because the “acid does not have enough time to irritate the esophagus and cause heartburn” (MWEN&T).
For several days, I had been experiencing something like acid reflux, but it seemed to get stuck inside my throat. It was a very uncomfortable feeling and made my glands and voice box feel swollen.
I did a little research and came across a website at the MidWest Ear, Nose & Throat P.A. (MWEN&T) which names the problem as Laryngopharyngeal Reflux (LPR) and describes some of the symptoms as:
- Hoarseness
- A "lump" in the throat
- Trouble swallowing
- Chronic cough
- Too much throat mucus
- Heartburn
Also, when I was originally diagnosed with GERD back in late October 2009 with my first couple visits to the ER, I couldn’t understand how it could be GERD because I had never been one to have acid reflux (at least as I understood it) and rarely had heartburn. And suddenly, these medical professionals were telling me I was experiencing acid reflux but it didn’t feel like any acid reflux!
I couldn't understand it. So I followed all the guidelines for GERD (no acidic foods, no laying down after eating for several hours, no drinking caffeinated beverages, avoided fatty and fried foods, sugary foods, chocolate) -- and it seemed to make no difference what I ate, or what time of day I ate.
According to the MidWest EN&T, “many people with LPR never have heartburn” (italics added) and because it is so “silent,” it can be difficult to diagnose. For people who have had it in the past without realizing it, we don’t feel the heartburn because the “acid does not have enough time to irritate the esophagus and cause heartburn” (MWEN&T).
On the other hand, if that backflow does end up all the way into the throat, apparently even more damage can be done because the throat and voice box are very sensitive to stomach acid and can even injure your lungs and cause difficulty breathing. Damage can occur not only to the larynx but to the trachea, bronchi, and lungs (hmmm…. thinking chronic bronchitis, here).
Many times over the years, I have had difficulty clearing my throat, and my voice was often hoarse, particularly if I had to lay down (whether on the table at the doctor’s office, the dental chair, or anywhere). MidWest EN&T also suggests that some people “have a problem with too much nose and throat drainage, that is, too much mucus or phlegm.” And yet another sign is a post-nasal drip (which I suddenly developed out of no where with no sign of sneezing or sinus trouble).
“The lack of GERD symptoms can mean that silent reflux damage is quite advanced when it is finally diagnosed. Long-term silent reflux damage increases the risk of acid reflux complications” (Michael McGrath, “Silent Reflux, Esophageal Reflux and Symptoms") .
Many times over the years, I have had difficulty clearing my throat, and my voice was often hoarse, particularly if I had to lay down (whether on the table at the doctor’s office, the dental chair, or anywhere). MidWest EN&T also suggests that some people “have a problem with too much nose and throat drainage, that is, too much mucus or phlegm.” And yet another sign is a post-nasal drip (which I suddenly developed out of no where with no sign of sneezing or sinus trouble).
Did you know that studies "demonstrate that LPR patients are more likely to have reflux in an upright position whereas GERD patients are more likely to reflux in a supine position" (Postma and Halum, “Laryngeal and Pharyngeal complications of gastroesophageal reflux disease” GI Motility Online)? This might explain why I would experience this silent reflux while sitting up, watching TV or typing away on my computer.
Did you also know that it takes longer to treat and resolve LPR than GERD ? LPR can take several months to heal, while GERD symptoms can improve rapidly (Postma and Halum). The bad news is that people with silent reflux have a greater chance of esophageal dysplasia (cellular changes in the esophagus) and cancer than those with regular GERD (for cancer to develop as a result of LPR, the LPR must be very severe and go untreated for many years. Source: MWEN&T). As well, esophageal damage by acid and pepsin exposure can be reversible, while your voice box and throat can be easily and irreversibly damaged (Postma and Halum).
Did you also know that symptoms of LPR can also include chest pain (McGrath)? Yep, have had that in my little line-up of symptoms, but I'm not saying that is the cause. According to McGrath, “Hoarseness is most common in the mornings, as lying down increases the chances of esophageal reflux.” I’ve had plenty of experience with that. McGrath also states that “if stomach acid reaches the salivary glands, the glands may flood the mouth with a sour, salty liquid called water brash.” Again, another new experience during my 4-day silent reflux also. I couldn’t figure out why my mouth was watering at weird random times.
Did you know that LPR and GERD are not treated in the same way? They need to be treated differently because the laryngeal mucosa is so much more easily damaged than esophageal mucosa. Postma and Halum say that “the esophagus can tolerate exposure of up to 50 episodes of reflux a day without injury” and that “as few as three isolated episodes of laryngeal acid/pepsin exposure per week have been shown to induce injury.” In a nutshell, GERD is easier to treat and responds to treatment, but successful treatment of LPR requires chronic therapy.
Did you know that LPR and GERD are not treated in the same way? They need to be treated differently because the laryngeal mucosa is so much more easily damaged than esophageal mucosa. Postma and Halum say that “the esophagus can tolerate exposure of up to 50 episodes of reflux a day without injury” and that “as few as three isolated episodes of laryngeal acid/pepsin exposure per week have been shown to induce injury.” In a nutshell, GERD is easier to treat and responds to treatment, but successful treatment of LPR requires chronic therapy.
That might explain why the clinic orginally had me on the Prilosec (omeprazole, a PPI or proton-pump-inhibitor) twice a day rather than once daily (more commonly for GERD). For LPR, you would need “twice daily PPI coverage” and would need to take it 30 – 45 minutes before breakfast, and again before dinner.
I actually had stopped taking the Prilosec once I finally got the official diagnosis of celiac disease because it didn’t seem to matter whether I took it or not. However, I also found out later that I was not taking it properly (on an empty stomach, at least 30 minutes before eating). It wasn’t until recently that I felt the silent reflux (LPR) again and this time it lasted for several days. But at the time, I didn’t even know it was silent reflux—I just thought it was “reflux” and couldn’t figure out what the heck it was doing in my neck and getting stuck in my throat!!
Just for the record, I am not a pill person. Taking vitamins is bad enough, but at least I know they are all natural, and have no fillers or extra chemicals. Whereas, these medications—I would just as soon do without. Yet, according to Postma and Halen, I need to stay on it for at least 6 months, and if the inflammation is gone I can taper off and eventually discontinue the antireflux meds. According to Postma and Halen, “50% of LPR patients on twice-daily PPI therapy have symptomatic improvement at 2 months, and an additional 22% improve from 2 to 4 months after initiating therapy.”
Other treatments may be as simple as basic antacids like Mylanta and Maalox. MidWestEN&T recommend 1 tablespoon four times a day—basically, one after each meal and one before bedtime. In case you haven’t already noticed with my own personal story (and according MWEN&T), when you have LPR, changing habits and diets don’t always work. So stick to treatment.
What is the connection with celiac disease? According to Postma and Halum, “immunocompromised patients may mount little response with infectious laryngitis” and as such are more susceptible to infections. More chronic forms of LPR can be found in those with autoimmune diseases: “autoimmune diseases that produce laryngeal inflammation most commonly have coexistent systemic symptoms” (i.e. people with an autoimmune disease uaully have symptoms that affect multiple organs, systems, etc.) and if not treated properly, there is a greater rate of reoccurrence and complications.
According to Natural-Reflux-Cure.com, “digestive juices can get into the upper throat at night as with regular acid reflux or GERD, but more people with LPR have damage occur during the day than at night” --which explains my daytime symptoms completely.
The Natural-Reflux-Cure website lists the following as common possible symptoms of LPR:
- Asthma or asthma-like symptoms
- Bad breath that won’t go away
- Belching or burping
- Chronic Cough
- Difficulty singing or extended talking
- Dysphonia (changes with the voice)
- Ear pain
- Feeling of a lump or something stuck in the throat
- Hoarseness
- Laryngospasm (feeling like one can’t catch one’s breath)
- Post nasal drip
- Sore throat
- Throat clearing
- Trouble swallowing
- Weak voice
- Wheezing
How do they diagnose LPR? A throat exam is the first step in the diagnosis because your throat will likely look red and swollen. A couple nights ago, for example, my voice box felt so swollen I had to breathe through my mouth a few times, or scoot my jaw foreward (which I find myself doing a lot anyway because my jaw seems set too far back-- at least that was my reasoning for breathing better, anyway).
Tests for LPR include pH monitoring (or pH-metry) and a barium swallow in which you swallow a chalky liquid that can be seen on x-rays. It will reveal any narrowing or abnormalities in the throat or esophagus (MWEN&T). The pH-metry involves a 24-hour, over-night test (done at home) in which a tube is placed through your nose and stays in your throat to measure acid.
And believe it or not, LPR can occur in babies and children! It can cause throat and lung problems and even breathing problems in babies who seem to have a lot of phlegm of difficulty swallowing or nursing. I would have never guessed a baby could have acid reflux!
Personal conclusion: Sometimes I wonder if this is why I could never yell (my yells end in fits of coughing) or speak loudly (why I am always so ‘quiet’) or read aloud for long periods of time—my voice becomes weak and hoarse and I begin coughing or just lose my voice. When I was younger, doctors would just dismiss it and say “Oh, its probably just scar tissue from repeated bouts of strep throat.” I’m beginning to think I’ve had this LPR off and on, all my life.
Monday, February 15, 2010
Week 7: G-Free Recap
The week didn’t start out terribly bad— I knew I was still recovering from a cold and each day I seemed a little better. I was still feeling some faint heart palpitations, particularly in the afternoons (must be when I’m getting tired or something), but at least the sneezing and coughing was going away. I took my newly prescribed Vitamin D (50,000 IUs) on Sunday, 3 days after the first dose.
I continued to increase my time on the treadmill-- two walks a day, plus a 20 minute Pilates workout to rebuild my strength, and 10 minutes of weight bearing exercises using a Pilates machine. I was still getting heart palpitations several minutes into my treadmill walks, and began wondering which would be better: shorter time on the treadmill but a faster pace? Or a longer time with a slower pace? Which method would be more beneficial to strengthening my heart (more about this later)?
Additionally, I was still feeling some congestion or fullness in my upper left chest that sometimes spread into the left side of my neck and my left armpit. I wondered again—why is it always my left side? Still no answers.
I took my third prescribed Vitamin D dose on Wednesday, two days after my last dose because I am supposed to take it twice a week. I figured Wednesdays and Sundays were just as good days as any, right? Within a couple hours of taking the Vitamin D, however, I began to feel nauseous. What had started out as a pretty good day went downhill quite rapidly. Within a couple more hours, a few random hives started popping up here and there. I made no connection to the vitamin, yet, because I had no reaction to it last week.
My back started aching on the same day, and I was beginning to feel flu-like. The last two times I experienced nausea and a back ache, I had a kidney infection. AGAIN??? I didn’t sleep a wink the entire night, and by the next day, I was even more nauseous, couldn’t eat, and for the first time since going gluten-free, felt distended and constipated. I tried my treadmill routine in the morning, but by the time I finished I felt like I was about to go into shock—cold and clammy, lightheaded and queasy. My heart was feeling very weak, and whenever I laid down to rest, I felt like I could very easily stop breathing-- my heart would jump back into action again.... very weird, and I lack the literary skills to put it into proper words.
I managed to get in to see my doctor that afternoon —the only medical professional I’ve seen all this time that I actually trust. My back pain was not in the right place to be a kidney concern, so that was good news to me. He offered a beta blocker for the palpitations, which I turned down because I don’t want anything messing with my heart as it is —and he offered a regular prescription of clonazepam for anxiety and to help me rest (which I also declined—for now). He decided that I may be reacting to the Vitamin D, in which side effects listed everything I was going through. Stop the vitamin for a week, try it again, and see what happens. Sounded like a plan to me!
I continued to develop a couple of random hives that night, and my stomach began to hurt just as if I had been gluten-ized!! And yet, I hadn’t eaten anything that I was aware of that could have caused a gluten reaction! I wondered if the vitamin had gluten, but I had been assured by the pharmacist that it did not.
The next day, my stomach was very sore. I felt like I had been run over by a truck —the last time I felt that bad was when I first decided to go gluten-free back in December and see if it helped. I still felt queasy, but not enough to give up my treadmill walks —getting my heart stronger is my first priority.
My doctor had suggested a target heart rate of around 160, and so I walked 30 minutes, twice a day, for the rest of the week, keeping my heart rate at or below (and sometimes a little above) that target heart rate. Following that pattern for the rest of the week all but eliminated the heart palpitations. They gradually stopped happening during my walks, and have hardly happened since then at all!
The only drawback to the two 30-minute walks is something new for me: sore hips —whether it is related to my osteopenia, I don’t know —because my back has been very sore, and my injured left ring finger decided to flare up again also —but, I don’t think it is related —at least I hope not. I think my hip flexors just need to get used to walking for an hour a day.
My new question: Did I react to the Vitamin D because there was only two days between the last dose (and three days between the first two)? In other words, should I wait three days between each Vitamin D dose? Or still go three days and two days?
I continued to increase my time on the treadmill-- two walks a day, plus a 20 minute Pilates workout to rebuild my strength, and 10 minutes of weight bearing exercises using a Pilates machine. I was still getting heart palpitations several minutes into my treadmill walks, and began wondering which would be better: shorter time on the treadmill but a faster pace? Or a longer time with a slower pace? Which method would be more beneficial to strengthening my heart (more about this later)?
Additionally, I was still feeling some congestion or fullness in my upper left chest that sometimes spread into the left side of my neck and my left armpit. I wondered again—why is it always my left side? Still no answers.
I took my third prescribed Vitamin D dose on Wednesday, two days after my last dose because I am supposed to take it twice a week. I figured Wednesdays and Sundays were just as good days as any, right? Within a couple hours of taking the Vitamin D, however, I began to feel nauseous. What had started out as a pretty good day went downhill quite rapidly. Within a couple more hours, a few random hives started popping up here and there. I made no connection to the vitamin, yet, because I had no reaction to it last week.
My back started aching on the same day, and I was beginning to feel flu-like. The last two times I experienced nausea and a back ache, I had a kidney infection. AGAIN??? I didn’t sleep a wink the entire night, and by the next day, I was even more nauseous, couldn’t eat, and for the first time since going gluten-free, felt distended and constipated. I tried my treadmill routine in the morning, but by the time I finished I felt like I was about to go into shock—cold and clammy, lightheaded and queasy. My heart was feeling very weak, and whenever I laid down to rest, I felt like I could very easily stop breathing-- my heart would jump back into action again.... very weird, and I lack the literary skills to put it into proper words.
I managed to get in to see my doctor that afternoon —the only medical professional I’ve seen all this time that I actually trust. My back pain was not in the right place to be a kidney concern, so that was good news to me. He offered a beta blocker for the palpitations, which I turned down because I don’t want anything messing with my heart as it is —and he offered a regular prescription of clonazepam for anxiety and to help me rest (which I also declined—for now). He decided that I may be reacting to the Vitamin D, in which side effects listed everything I was going through. Stop the vitamin for a week, try it again, and see what happens. Sounded like a plan to me!
I continued to develop a couple of random hives that night, and my stomach began to hurt just as if I had been gluten-ized!! And yet, I hadn’t eaten anything that I was aware of that could have caused a gluten reaction! I wondered if the vitamin had gluten, but I had been assured by the pharmacist that it did not.
The next day, my stomach was very sore. I felt like I had been run over by a truck —the last time I felt that bad was when I first decided to go gluten-free back in December and see if it helped. I still felt queasy, but not enough to give up my treadmill walks —getting my heart stronger is my first priority.
My doctor had suggested a target heart rate of around 160, and so I walked 30 minutes, twice a day, for the rest of the week, keeping my heart rate at or below (and sometimes a little above) that target heart rate. Following that pattern for the rest of the week all but eliminated the heart palpitations. They gradually stopped happening during my walks, and have hardly happened since then at all!
The only drawback to the two 30-minute walks is something new for me: sore hips —whether it is related to my osteopenia, I don’t know —because my back has been very sore, and my injured left ring finger decided to flare up again also —but, I don’t think it is related —at least I hope not. I think my hip flexors just need to get used to walking for an hour a day.
My new question: Did I react to the Vitamin D because there was only two days between the last dose (and three days between the first two)? In other words, should I wait three days between each Vitamin D dose? Or still go three days and two days?
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.
Sunday, February 7, 2010
Hypoglycemia, Celiac, Adrenal Cortical Insufficiency, and Addison’s Disease
I happened to run across a website the other day, that mentioned the “inner trembling” I often feel, particularly late at night when all else is quiet, about 5 or 6 hours after my last meal. The website lists three different types of hypoglycemia (low blood sugar), but the one that caught my eye was regarding Type 2 (Adrenergic Type):
Hmmmm….. I knew I didn’t have a thyroid problem because my thyroid test results were normal. However, this led me to think about the kidney problems I’d had over the last few months (the adrenals are on the kidneys) and did a little research on adrenal cortical insufficiency, and I found that adrenal cortical insufficiency can be caused by nutritional deficiencies (think: celiac disease and nutrient malsabsorption):
This led me to yet another idea: What is Addison’s Disease?
According to the Mayo Clinic:
Symptoms include:
What is the connection?Your adrenal glands have two parts: one that produces adrenaline-type hormones and one that produces corticosteroids such as glucocorticoids and mineralcorticoids. Cortisol is one of the glucocorticoids. According to the Mayo Clinic, glucocorticoids “influence your body's ability to convert food fuels into energy, play a role in your immune system's inflammatory response and help your body respond to stress” and the mineralcorticoids “maintain your body's balance of sodium and potassium and water to keep your blood pressure normal.”
What does any of that mean to me? The glucocorticoids play a part in my immune system’s ability to respond (why am I catching every "bug" that walks through the door?) and the mineracorticoids maintain my electrolytes (something I have questioned several times). It may be something, it may be nothing.
What does it have to do with celiac disease? According to the Mayo Clinic: “The failure of your adrenal glands to produce adrenocortical hormones is most commonly the result of the body attacking itself (autoimmune disease). For unknown reasons, your immune system views the adrenal cortex as foreign, something to attack and destroy.”
According to the Journal of Clinical Endocrinology & Metabolism, there is an increased rate of Addison’s Disease (AD) in celiac patients (Peter Elfström, Scott M. Montgomery, Olle Kämpe, Anders Ekbom and Jonas F. Ludvigsson. “Risk of Primary Adrenal Insufficiency in Patients with Celiac Disease” The Journal of Clinical Endocrinology & Metabolism Vol. 92, No. 9 3595-3598, Copyright © 2007 by The Endocrine Society). These authors believe that “there was a statistically significantly positive association between CD and subsequent AD” and they “suggest an increased awareness of AD in individuals with CD.”
What I’ve been talking about so far is primary adrenal insufficiency. I should also mention that there is also a secondary adrenal insufficiency in which your pituitary gland is having problems. In this case, there wouldn't be enough adrenocorticotropic hormone (ACTH), “which stimulates the adrenal cortex to produce its hormones” (Mayo Clinic).
Treatment for AD would mean “taking hormones to replace the insufficient amounts being made by your adrenal glands, in order to mimic the beneficial effects those naturally made hormones would normally produce” (Mayo Clinic).
Personal conclusion? Perhaps the tremors/trembling I feel inside my body is related to an adrenergic type hypoglycemia which may have been caused by an adrenal insufficiency or even Addison’s disease, which is something that can be found in patients with celiac disease. Perhaps this why I have been getting sick so easily? Regardless, it is another hurdle that I must try to overcome, and something for which I will seek additional answers.
“After ingestion of glucose the blood sugar rises for the first three hours followed by a hypoglycemic rebound at 4 to 6 hours. Symptoms associated with this type of response are tiredness 2 hours after eating, allergic responses or food intolerances, and shakiness before meals. When blood sugar falls rapidly, the early symptoms are those brought on by a compensating secretion of adrenalin; these include sweating, weakness, hunger, racing pulse and an ‘inner trembling’. This response can be due to adrenal cortical insufficiency or thyroid deficiency” (www.diagnose-me.com/cond/C18558.html).
Hmmmm….. I knew I didn’t have a thyroid problem because my thyroid test results were normal. However, this led me to think about the kidney problems I’d had over the last few months (the adrenals are on the kidneys) and did a little research on adrenal cortical insufficiency, and I found that adrenal cortical insufficiency can be caused by nutritional deficiencies (think: celiac disease and nutrient malsabsorption):
“People with mild adrenal insufficiency may suffer from the same symptoms as those with Addison's Disease. Symptoms can include headaches, muscular aches and pains, joint pains, confusion, impaired memory, low motivation, and many others. Additionally, such people may suffer from an increased susceptibility to all kinds of infections including those caused by bacteria, viruses, parasites, yeast, and fungi” (www.mbschachter.com/adrenal.htm).
This led me to yet another idea: What is Addison’s Disease?
According to the Mayo Clinic:
“Addison's disease is a disorder that results when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison's disease, your adrenal glands produce too little cortisol, and often insufficient levels of aldosterone as well. Also called adrenal insufficiency or hypocortisolism."
This piqued my interest even more because cortisol is the hormone that regulates stress and helps you to sleep. Being a lifelong insomniac, it made me want to know more. Though Addison’s disease can occur at any age, it “is most common in people ages 30 to 50” (Mayo Clinic).
Symptoms include:
- Muscle weakness and fatigue
- Weight loss and decreased appetite
- Darkening of your skin (hyperpigmentation)
- Low blood pressure, even fainting
- Salt craving
- Low blood sugar (hypoglycemia)
- Nausea, diarrhea or vomiting
- Muscle or joint pains
- Irritability
- Depression
- Pain in your lower back, abdomen or legs
- Severe vomiting and diarrhea, leading to dehydration
- Low blood pressure
- Loss of consciousness
- High potassium (hyperkalemia) (thoughts of my 2nd ER visit when a medical worker popped her head into the treatment room after they did a UA and asked if I was taking a potassium supplement – I was not.)
Have I lost you yet?
Going from Hypoglycemia to Adrenal insufficiency to Addison’s disease?
What is the connection?
What does any of that mean to me? The glucocorticoids play a part in my immune system’s ability to respond (why am I catching every "bug" that walks through the door?) and the mineracorticoids maintain my electrolytes (something I have questioned several times). It may be something, it may be nothing.
What does it have to do with celiac disease? According to the Mayo Clinic: “The failure of your adrenal glands to produce adrenocortical hormones is most commonly the result of the body attacking itself (autoimmune disease). For unknown reasons, your immune system views the adrenal cortex as foreign, something to attack and destroy.”
According to the Journal of Clinical Endocrinology & Metabolism, there is an increased rate of Addison’s Disease (AD) in celiac patients (Peter Elfström, Scott M. Montgomery, Olle Kämpe, Anders Ekbom and Jonas F. Ludvigsson. “Risk of Primary Adrenal Insufficiency in Patients with Celiac Disease” The Journal of Clinical Endocrinology & Metabolism Vol. 92, No. 9 3595-3598, Copyright © 2007 by The Endocrine Society). These authors believe that “there was a statistically significantly positive association between CD and subsequent AD” and they “suggest an increased awareness of AD in individuals with CD.”
What I’ve been talking about so far is primary adrenal insufficiency. I should also mention that there is also a secondary adrenal insufficiency in which your pituitary gland is having problems. In this case, there wouldn't be enough adrenocorticotropic hormone (ACTH), “which stimulates the adrenal cortex to produce its hormones” (Mayo Clinic).
How do we find out one way or the other? There are several tests, including a blood test to measure your sodium, potassium, cortisol and ACTH, and also for antibodies associated with Addison’s disease (AD). Other tests include ACTH stimulation test, and insulin-induced hypoglycemia test (according to the Mayo Clinic, after an injection of insulin, your glucose level should fall and cortisol level should rise). Additionally, a CT scan will reveal any abnormalities on your adrenals.
Treatment for AD would mean “taking hormones to replace the insufficient amounts being made by your adrenal glands, in order to mimic the beneficial effects those naturally made hormones would normally produce” (Mayo Clinic).
Personal conclusion? Perhaps the tremors/trembling I feel inside my body is related to an adrenergic type hypoglycemia which may have been caused by an adrenal insufficiency or even Addison’s disease, which is something that can be found in patients with celiac disease. Perhaps this why I have been getting sick so easily? Regardless, it is another hurdle that I must try to overcome, and something for which I will seek additional answers.
Monday, February 1, 2010
Week 5: G-Free Recap: Overcoming the Hurdle
For 12 weeks in a row, I was sick – nearly every single day. I might have a good day or two, and then more illness would plague my body. For the first 8 weeks, I had no clue why I was feeling so sick, and hence no change in my diet. Once I tried going gluten-free for nearly a week, I felt so much better I was sure I had just diagnosed myself! But over the next 4 weeks, through trial and error, through the holidays, through sorting out misleading blood tests, and through two kidney infections, life was rough for me. I envied people who walked around "like normal" while I felt sick to my stomach all the time.
When January 2010 hit, I determined to make sure I ingested no gluten, whatsoever, and to the best of my knowledge, that’s the way it has been. The worst things I had to deal with were a kidney infection and Chronic Fatigue Syndrome— maybe CFS was another self-diagnosis, but I had all the symptoms, and so it fit.
During the last week of January (this past week) I felt like I finally had cleared the hurdle. It was the best week in 13 weeks. Almost every day was a 100% day.
I began working out with Pilates again, gradually rebuilding my strength and my “core” for about 20 minutes a day, five days a week. I also continued to walk/jog on the treadmill at least twice a day for 15 minutes at a time, averaging a distance of just over a mile-and-a-half a day.
Though I still feel I am not completely healed and there may be some overlying complications, I do feel as though I can “rejoin the living” again. I can go to the store without worrying if I will get sick, and no longer fear being left alone ("in case something happens").
Slowly, and by degrees, I feel like I am living again, and it is a nice feeling.
When January 2010 hit, I determined to make sure I ingested no gluten, whatsoever, and to the best of my knowledge, that’s the way it has been. The worst things I had to deal with were a kidney infection and Chronic Fatigue Syndrome— maybe CFS was another self-diagnosis, but I had all the symptoms, and so it fit.
During the last week of January (this past week) I felt like I finally had cleared the hurdle. It was the best week in 13 weeks. Almost every day was a 100% day.
I began working out with Pilates again, gradually rebuilding my strength and my “core” for about 20 minutes a day, five days a week. I also continued to walk/jog on the treadmill at least twice a day for 15 minutes at a time, averaging a distance of just over a mile-and-a-half a day.
Though I still feel I am not completely healed and there may be some overlying complications, I do feel as though I can “rejoin the living” again. I can go to the store without worrying if I will get sick, and no longer fear being left alone ("in case something happens").
Slowly, and by degrees, I feel like I am living again, and it is a nice feeling.
Emulsifiers: Gluten-Free or Not?
As a self-confessed chocoholic, I am having a hard time finding convenient sources of chocolate that I can safely eat. I heard that Hershey’s Kisses were gluten-free and I munched on them freely during the Christmas holidays, but ended up sick almost the entire week. Whether it was actually the Kisses, I can’t be certain, but they are the only "questionable" candies I ate with consistency between Christmas and New Year’s.
Looking at the ingredients of Hershey’s Kisses, the only term that I could not find on any gluten-free "Safe List" was “emulsifier” and the more chocolate I looked at, the more emulsifiers I found. Could this be my particular problem with so-called gluten-free chocolates? I had to find out.
So what is an emulsifier in the first place? Well, to put it simply, when you mix water and oil together and shake it as hard as you can, you get little droplets of oil and water together, but sooner or later, once the shaking stops, the water and oil will begin to separate again.
To get a better picture, think of it like this: An emulsifier is shaped something like a lollipop with a round head and a thin tail. The head is water-loving, and the tail is oil-loving. It gets between the oil and water (the head holding onto the water and the tail holding onto the oil), and helps stabilize the mixture, the little droplets remain suspended—you get an emulsion.
The emulsifier also has “the ability to interact with other food ingredients. In this way, various functionalities can be obtained, for example, interaction with proteins or carbohydrates. The emulsifier may be an aerating agent, starch complexing agent and/or crystallization inhibitor” (Emulsifiers.org).
According to Jeanne Turner of Baking-Management.com: “Dried whole eggs help emulsify and strengthen sweet dough properties, such as in a cinnamon roll. Other emulsifiers have anti-staling properties.” Emulsifiers have a very positive role in foods because they also improve texture and aeration (think: Three Musketeers candy bar) and can even extend shelf life.
Emulsifiers are everywhere, and not just in food products. You will also find emulsifiers in soaps and detergents: how else is Dawn going to pull grease away from your dirty dishes and Tide going to pull stains out of your laundry?
OK, so what kinds of things are emulsifiers? Common emulsifiers include such ingredients as egg yolks, and lecithin (which is a type of fat found in eggs, soy, and other food products) and mono- and diglycerides (Hozey, Rachel, Ehow.com). Other examples include honey, mustard in which the mucilage surrounding the seed hull acts as the emulsifier (Wikipedia), as well as the locust bean gum (from carob beans), and gelling agents and thickeners, such as pectin (Food.gov.uk).
Tragacanth is one of the oldest known natural emulsifiers. Many sources, such as CSPI (Center for Science in the Public Interest) believe this can cause severe allergic reactions (Wilson, Lester, csaceliacs.org). Hydroxypropyl methylcellulose is a gum from a modified plant fiber used as an emulsifier (gluten-free) for thickening.
And what do emulsifiers have to do with gluten? According to csaceliacs.org, “Emulsifiers alter the surface properties of other ingredients they contact… and may contain gluten from grain.”
Emulsifiers are everywhere: ice cream, breads and other foods made with grain, soft drinks, chewing gum, mayonnaise, and creamy dressings (Hozey). They can also be found in vegetables, whether fresh, frozen, dried or canned “unless they contain thickening agents to evaluate” (Wilson). Additionally, “canned products may contain emulsifiers, preservatives, stabilizers, and food starch not defined by source" (Wilson).
As well, popular drinks contain emulsifiers and include “coffee, tea, chocolate made from cocoa, fruit juices, carbonated drinks and some nut and rice drinks. Instant or processed drinks without malt, additives, stabilizers, or emulsifiers added that must be evaluated” (Wilson). Some root beers are gluten-free, and some are not, so be sure to check.
Be sure to also check any medication you take. If you have a prescription, ask the pharmacist to call the manufacturer to make sure it is gluten-free. I warn you, not all pharmacists are happy to do this, but it is necessary for your health. I have had some pharmacists say “That is your job, not mine!” Other times, they just give a heavy sigh, and sometimes roll their eyes and sometimes do all three. Just be sure you do it during the day time because at night, there is no one for them to call and you are stuck. “All medications have fillers or dispersing agents, some of which may include wheat starch” (dietsite.com).
GI Care.com states that any of the following on food labels "usually means that a grain containing gluten has been used:"
When it Doubt, Do Without!!
Looking at the ingredients of Hershey’s Kisses, the only term that I could not find on any gluten-free "Safe List" was “emulsifier” and the more chocolate I looked at, the more emulsifiers I found. Could this be my particular problem with so-called gluten-free chocolates? I had to find out.
So what is an emulsifier in the first place? Well, to put it simply, when you mix water and oil together and shake it as hard as you can, you get little droplets of oil and water together, but sooner or later, once the shaking stops, the water and oil will begin to separate again.
To get a better picture, think of it like this: An emulsifier is shaped something like a lollipop with a round head and a thin tail. The head is water-loving, and the tail is oil-loving. It gets between the oil and water (the head holding onto the water and the tail holding onto the oil), and helps stabilize the mixture, the little droplets remain suspended—you get an emulsion. “When an emulsifier is added to the system, the droplets remain dispersed, and a stable emulsion is obtained” (Emulisifiers.org).
The emulsifier also has “the ability to interact with other food ingredients. In this way, various functionalities can be obtained, for example, interaction with proteins or carbohydrates. The emulsifier may be an aerating agent, starch complexing agent and/or crystallization inhibitor” (Emulsifiers.org).
According to Jeanne Turner of Baking-Management.com: “Dried whole eggs help emulsify and strengthen sweet dough properties, such as in a cinnamon roll. Other emulsifiers have anti-staling properties.” Emulsifiers have a very positive role in foods because they also improve texture and aeration (think: Three Musketeers candy bar) and can even extend shelf life.
Emulsifiers are everywhere, and not just in food products. You will also find emulsifiers in soaps and detergents: how else is Dawn going to pull grease away from your dirty dishes and Tide going to pull stains out of your laundry?
OK, so what kinds of things are emulsifiers? Common emulsifiers include such ingredients as egg yolks, and lecithin (which is a type of fat found in eggs, soy, and other food products) and mono- and diglycerides (Hozey, Rachel, Ehow.com). Other examples include honey, mustard in which the mucilage surrounding the seed hull acts as the emulsifier (Wikipedia), as well as the locust bean gum (from carob beans), and gelling agents and thickeners, such as pectin (Food.gov.uk).
Tragacanth is one of the oldest known natural emulsifiers. Many sources, such as CSPI (Center for Science in the Public Interest) believe this can cause severe allergic reactions (Wilson, Lester, csaceliacs.org). Hydroxypropyl methylcellulose is a gum from a modified plant fiber used as an emulsifier (gluten-free) for thickening.
And what do emulsifiers have to do with gluten? According to csaceliacs.org, “Emulsifiers alter the surface properties of other ingredients they contact… and may contain gluten from grain.”
Emulsifiers are everywhere: ice cream, breads and other foods made with grain, soft drinks, chewing gum, mayonnaise, and creamy dressings (Hozey). They can also be found in vegetables, whether fresh, frozen, dried or canned “unless they contain thickening agents to evaluate” (Wilson). Additionally, “canned products may contain emulsifiers, preservatives, stabilizers, and food starch not defined by source" (Wilson).
As well, popular drinks contain emulsifiers and include “coffee, tea, chocolate made from cocoa, fruit juices, carbonated drinks and some nut and rice drinks. Instant or processed drinks without malt, additives, stabilizers, or emulsifiers added that must be evaluated” (Wilson). Some root beers are gluten-free, and some are not, so be sure to check.
Be sure to also check any medication you take. If you have a prescription, ask the pharmacist to call the manufacturer to make sure it is gluten-free. I warn you, not all pharmacists are happy to do this, but it is necessary for your health. I have had some pharmacists say “That is your job, not mine!” Other times, they just give a heavy sigh, and sometimes roll their eyes and sometimes do all three. Just be sure you do it during the day time because at night, there is no one for them to call and you are stuck. “All medications have fillers or dispersing agents, some of which may include wheat starch” (dietsite.com).
GI Care.com states that any of the following on food labels "usually means that a grain containing gluten has been used:"
- stabilizer
- starch (some starch, such as from corn, is okay)
- flavoring
- emulsifier
- hydrolyzed
- plant protein
When it Doubt, Do Without!!
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