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?
Showing posts with label Kidney. Show all posts
Showing posts with label Kidney. Show all posts
Monday, February 15, 2010
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.
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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