Sunday, May 20, 2012
Roller Coaster
Not much has changed... Although I had two wonderful, symptom-free weeks at one point. That was about two months ago... I also started tracking my food through sparkpeople.com, which has proven to be a big help, not only with IBS control, but with getting fit and healthy as well. I began exercising more regularly, too. It was going GREAT, until I had to travel out of state several times and was unable to stay on a regulated diet. The stress of traveling didn't help, either! Fast forward to this past week when I began my three day struggle with mysterious, crashing waves of pain in my bowels - It was terrible. These waves were relentless - doubling me over in pain, making me weak and shaky, and causing my body to refuse any type of movement. I first felt them at 3am one night, and was in the bathroom for quite a while - half asleep, of course. Slowly, I forced myself to crawl back into bed, because I knew I'd have to be at work bright and early that morning. I woke up thinking I'd be fine, but that's when I realized I would be dealing with waves for the entire day. Little did I know how long it would really last. I was at work two of those three days, and boy did I have a difficult time with it. I would stop in my tracks whenever the waves would hit, unable to move or think straight. Praying for break time to come around JUST for the chance to sit down and be still, if only for a moment. It's fading away now, and I'm starting to feel like myself. Soon, I'll schedule a return visit to my doctor, and perhaps request to try a different medicine. Not that the Dicyclomine doesn't help, but I'd like to give other meds a try. Might as well, right? I've also been wanting to see a psychotherapist... But not sure if it's in the cards. I think it would help me a lot... not just with IBS and anxiety, but with other stuff too. Ah, well, a girl can dream.
Thursday, March 1, 2012
Treatment Update - Dicyclomine
I've done my research on IBS and Dicylomine, so I think I'm pretty educated on what I'm dealing with. Dicyclomine is an anticholinergic - it's supposed to block specific receptors in my stomach and intestinal muscles, reducing muscle contractions. These muscles must contract to properly digest food, but mine contract irregularly. When I eat, the muscles spasm like crazy causing my digestive system to malfunction. And stress makes it even worse.
It's been almost a month since I started taking Dicyclomine for Irritable Bowel Syndrome. It hasn't been easy, either. I struggled with it from the beginning due to the dosage of 3-4 times per day at least 30 minutes before meals. Eating sporadically has been my natural instinct for as long as I can remember. Even as a child I didn't have a steady meal routine, and as my health worsened, so did my ability to follow routines. Battling my digestive organs at all hours of the day has made it impossible for me. So I was only able to take it 2-3 times a day at the most, and timing it right was difficult because I'm so forgetful. I have to stop in my tracks, run to my locker half an hour BEFORE break time, take my pill and then go back to work until break time just to eat a small portion of food and make it through the next 3 hours. But my job is fast paced, busy and requires all of my focus, so most of the time I end up taking it less than 30 minutes before eating, which is not encouraged. After about a week and a half of taking Dicyclomine, I started experiencing anxiety and felt like I was completely out of my right mind. I stopped taking it for a couple of days and felt more like myself. I resumed taking it, but reduced dosage to 1-2 times a day depending on what I eat. And that's where I am now. It's not a very reliable means of symptom control. Sometimes it helps, sometimes it doesn't work at all. I never know for sure if it's going to be effective, which kinda defeats the purpose. However, any relief for any amount of time is like gold for me. I had forgotten what 100% felt like until I tried this medicine. It had been soooo long since I had a symptom free day, and I've had couple just this month. It's precious to me. And I'm like a different person on those days. I laugh and smile so much more; I catch myself in this carefree euphoria and I just close my eyes and breathe in deep, thinking "Healthy feels so wonderful. How blessed I am for this moment". I'm so grateful for those days, to just catch my breath and get a break from this burden... it's what I've wanted for so long - a break from the hell. So it feels like I'm not on a medication for symptom relief... It's more like a medication for short, random symptom 'breaks'. If I take too little, it doesn't work. When it doesn't work, I get really frustrated and it stresses me out causing my symptoms to worsen. If I take the recommended dosage, I go 'insane-in-the-membrane' and can't function. I haven't found my happy medium yet, but I'll be thrilled if and when I finally do. I was told to report back to my doctor if I wasn't satisfied with this particular medicine and we'd try something else. But I don't think I should give up on it just yet, since this first month was a bit shaky. Every IBS case is different, so I am aware I'm not following dosage as I'm expected to, and I definitely want to give it a fair chance.
But I have had other things distracting me from proper IBS treatment, like the knee injury I sustained from martial arts a few months back. I didn't take it as seriously as I should have so It has worsened over the past few weeks, adding more stress to my day-to-day life. I've had to take two weeks off from martial arts to give my knee time to bounce back, but it's looking like I'm going to need a lot more time off than that. And maybe even time off from work, or at least light duty. My job can be pretty strenuous at times, so it hasn't had time to heal and my performance has suffered. I've had to stop strenuous exercises as well, so my cardio is lacking. I've had to trade my stationary bike cardio for stationary boxing cardio. Even grocery shopping has become more frustrating in that it seems like people are constantly shoving past me, causing me to twist my knee without thinking twice.
I've experienced a few other misfortunes this month, but I'll spare you the snooze-fest. Needless to say the past few weeks have been a little rough. But even though my body is working against me, the fighter in me refuses to let go. I've been through a lot, and as a result, I've become a stronger person. I'll always have bad days that bring me down and tear me to pieces, but the more I go through, the more resilient I become because I see myself growing with every struggle and I can't help but appreciate that. It may sound silly, but I can't help feeling like all this struggle is preparing me for something much bigger. I've felt that way since I was a little girl. God made me different and I ask him why everyday, even though I know He won't answer a moment too soon.
It's been almost a month since I started taking Dicyclomine for Irritable Bowel Syndrome. It hasn't been easy, either. I struggled with it from the beginning due to the dosage of 3-4 times per day at least 30 minutes before meals. Eating sporadically has been my natural instinct for as long as I can remember. Even as a child I didn't have a steady meal routine, and as my health worsened, so did my ability to follow routines. Battling my digestive organs at all hours of the day has made it impossible for me. So I was only able to take it 2-3 times a day at the most, and timing it right was difficult because I'm so forgetful. I have to stop in my tracks, run to my locker half an hour BEFORE break time, take my pill and then go back to work until break time just to eat a small portion of food and make it through the next 3 hours. But my job is fast paced, busy and requires all of my focus, so most of the time I end up taking it less than 30 minutes before eating, which is not encouraged. After about a week and a half of taking Dicyclomine, I started experiencing anxiety and felt like I was completely out of my right mind. I stopped taking it for a couple of days and felt more like myself. I resumed taking it, but reduced dosage to 1-2 times a day depending on what I eat. And that's where I am now. It's not a very reliable means of symptom control. Sometimes it helps, sometimes it doesn't work at all. I never know for sure if it's going to be effective, which kinda defeats the purpose. However, any relief for any amount of time is like gold for me. I had forgotten what 100% felt like until I tried this medicine. It had been soooo long since I had a symptom free day, and I've had couple just this month. It's precious to me. And I'm like a different person on those days. I laugh and smile so much more; I catch myself in this carefree euphoria and I just close my eyes and breathe in deep, thinking "Healthy feels so wonderful. How blessed I am for this moment". I'm so grateful for those days, to just catch my breath and get a break from this burden... it's what I've wanted for so long - a break from the hell. So it feels like I'm not on a medication for symptom relief... It's more like a medication for short, random symptom 'breaks'. If I take too little, it doesn't work. When it doesn't work, I get really frustrated and it stresses me out causing my symptoms to worsen. If I take the recommended dosage, I go 'insane-in-the-membrane' and can't function. I haven't found my happy medium yet, but I'll be thrilled if and when I finally do. I was told to report back to my doctor if I wasn't satisfied with this particular medicine and we'd try something else. But I don't think I should give up on it just yet, since this first month was a bit shaky. Every IBS case is different, so I am aware I'm not following dosage as I'm expected to, and I definitely want to give it a fair chance.
But I have had other things distracting me from proper IBS treatment, like the knee injury I sustained from martial arts a few months back. I didn't take it as seriously as I should have so It has worsened over the past few weeks, adding more stress to my day-to-day life. I've had to take two weeks off from martial arts to give my knee time to bounce back, but it's looking like I'm going to need a lot more time off than that. And maybe even time off from work, or at least light duty. My job can be pretty strenuous at times, so it hasn't had time to heal and my performance has suffered. I've had to stop strenuous exercises as well, so my cardio is lacking. I've had to trade my stationary bike cardio for stationary boxing cardio. Even grocery shopping has become more frustrating in that it seems like people are constantly shoving past me, causing me to twist my knee without thinking twice.
I've experienced a few other misfortunes this month, but I'll spare you the snooze-fest. Needless to say the past few weeks have been a little rough. But even though my body is working against me, the fighter in me refuses to let go. I've been through a lot, and as a result, I've become a stronger person. I'll always have bad days that bring me down and tear me to pieces, but the more I go through, the more resilient I become because I see myself growing with every struggle and I can't help but appreciate that. It may sound silly, but I can't help feeling like all this struggle is preparing me for something much bigger. I've felt that way since I was a little girl. God made me different and I ask him why everyday, even though I know He won't answer a moment too soon.
Monday, February 6, 2012
A Diagnosis of Exclusion
"A diagnosis of exclusion is a medical condition reached by a process of elimination.
Diagnosis by exclusion tends to occur where scientific knowledge is scarce, specifically where the means to verify a diagnosis by an objective method is absent.
An example of such a diagnosis is... Irritable Bowel Syndrome."
--Wikipedia
On January 19th I finally had my first visit with a general practitioner regarding my abnormal digestive behavior. I figured it was as good a time as any, as my symptoms were at their worst and I was getting really frustrated with how things were going. I told him about all of my symptoms, letting him know that the constipation has greatly decreased and nausea and abdominal distention have been my worst symptoms since I changed my diet. I told him that I have tried blaming certain foods but can never seem to pinpoint them. He decided to do some blood work, testing me for Celiac Disease (per my request), Crohns Disease and Colitis. He also checked my thyroid. He then sent me on my way, and for the longest two weeks of my life I waited for my next appointment (set for Feb. 2). I did my best to be positive, hopeful, faithful and patient. But I could only think about one thing - Irritable Bowel Syndrome. The doctor had mentioned that he thought it might end up being IBS; little did he know how much I dreaded those awful words.
You see, I've researched digestive diseases and disorders for a long time, and although I am by no means a professional, I do understand the hidden reality of Irritable Bowel Syndrome. Over time, I came to the conclusion that it is a broad term used when the doctor can't find definitive evidence of a disease by their selected means. And it concerns me that so many people, some of which I know personally, who have been diagnosed with Crohns, Celiac, Colitis etc. have said that they were first misdiagnosed with IBS... more than once.
My hopes all along in my search for answers was to find a name for this illness, for it to be taken seriously... and to find a way around it. It seems to me that IBS is supposed to cover many different symptoms in many different combinations without sufficient categories or severity levels. Also, it's a term that commonly begs inaccurate preconceptions of outsiders, and the only relief currently available is through constant medication that merely pacifies the symptoms. All in all, I can't help feeling that Irritable Bowel Syndrome isn't a true-blue diagnosis; It's too indirect and generalized. It just doesn't satisfy my thirst for an answer... And I really believe that there are many people who feel the same way.
Suffice it to say that in the end, all tests came back negative and during my second doctor's appointment I was loosely diagnosed with Irritable Bowel Syndrome, leaving me in a confused daze in the days that followed. Still, I took it better than I expected. I did have the two weeks between testing and failing to reach a calm state of mind which helped, I'm sure. The doctor prescribed a medication known as 'Dicyclomine' that I must take 3-4 times a day, timing it to at least 30 minutes to an hour before meals. It's a lot harder than it sounds, especially given my sporadic eating schedule. My meals are always based on my symptoms, because if I'm nauseated I won't have an appetite, and that usually occurs at least once a day. But alas, I'm giving it the old college try, because I make it a point in my life to give everything a chance - to try anything twice :)
I'll be studying up on IBS and I'll be sure to update as soon as I get used to the meds and can give an accurate account of the outcome.
As a side note, I should probably explain that while I might seem like a diva to the unfamiliar, I'm actually quite the opposite in reality. I really only express these concerns in this way on my blog because it's the one place where I can rant freely, letting my mind wander. I can be vulnerable without a care. Sometimes I feel that writing is my only escape from the confines of society. In society I know that to protect all that I am, I must hide behind the wall I build between myself and the world... welcoming only those few precious souls that can knock it down... and rebuilding it again. Here, I'm free to whine and complain and show my weakness because it doesn't negatively affect me. In order to rid my life of negativity, I have to take it somewhere else. And maybe others will recycle it into positivity and make use of it :)
Resources:
Wikipedia - Irritable Bowel Syndrome
Pub Med Health - Irritable Bowel Syndrome
Pub Med Health - Dicyclomine
NDDIC - Irritable Bowel Syndrome
Diagnosis by exclusion tends to occur where scientific knowledge is scarce, specifically where the means to verify a diagnosis by an objective method is absent.
An example of such a diagnosis is... Irritable Bowel Syndrome."
--Wikipedia
On January 19th I finally had my first visit with a general practitioner regarding my abnormal digestive behavior. I figured it was as good a time as any, as my symptoms were at their worst and I was getting really frustrated with how things were going. I told him about all of my symptoms, letting him know that the constipation has greatly decreased and nausea and abdominal distention have been my worst symptoms since I changed my diet. I told him that I have tried blaming certain foods but can never seem to pinpoint them. He decided to do some blood work, testing me for Celiac Disease (per my request), Crohns Disease and Colitis. He also checked my thyroid. He then sent me on my way, and for the longest two weeks of my life I waited for my next appointment (set for Feb. 2). I did my best to be positive, hopeful, faithful and patient. But I could only think about one thing - Irritable Bowel Syndrome. The doctor had mentioned that he thought it might end up being IBS; little did he know how much I dreaded those awful words.
You see, I've researched digestive diseases and disorders for a long time, and although I am by no means a professional, I do understand the hidden reality of Irritable Bowel Syndrome. Over time, I came to the conclusion that it is a broad term used when the doctor can't find definitive evidence of a disease by their selected means. And it concerns me that so many people, some of which I know personally, who have been diagnosed with Crohns, Celiac, Colitis etc. have said that they were first misdiagnosed with IBS... more than once.
My hopes all along in my search for answers was to find a name for this illness, for it to be taken seriously... and to find a way around it. It seems to me that IBS is supposed to cover many different symptoms in many different combinations without sufficient categories or severity levels. Also, it's a term that commonly begs inaccurate preconceptions of outsiders, and the only relief currently available is through constant medication that merely pacifies the symptoms. All in all, I can't help feeling that Irritable Bowel Syndrome isn't a true-blue diagnosis; It's too indirect and generalized. It just doesn't satisfy my thirst for an answer... And I really believe that there are many people who feel the same way.
Suffice it to say that in the end, all tests came back negative and during my second doctor's appointment I was loosely diagnosed with Irritable Bowel Syndrome, leaving me in a confused daze in the days that followed. Still, I took it better than I expected. I did have the two weeks between testing and failing to reach a calm state of mind which helped, I'm sure. The doctor prescribed a medication known as 'Dicyclomine' that I must take 3-4 times a day, timing it to at least 30 minutes to an hour before meals. It's a lot harder than it sounds, especially given my sporadic eating schedule. My meals are always based on my symptoms, because if I'm nauseated I won't have an appetite, and that usually occurs at least once a day. But alas, I'm giving it the old college try, because I make it a point in my life to give everything a chance - to try anything twice :)
I'll be studying up on IBS and I'll be sure to update as soon as I get used to the meds and can give an accurate account of the outcome.
As a side note, I should probably explain that while I might seem like a diva to the unfamiliar, I'm actually quite the opposite in reality. I really only express these concerns in this way on my blog because it's the one place where I can rant freely, letting my mind wander. I can be vulnerable without a care. Sometimes I feel that writing is my only escape from the confines of society. In society I know that to protect all that I am, I must hide behind the wall I build between myself and the world... welcoming only those few precious souls that can knock it down... and rebuilding it again. Here, I'm free to whine and complain and show my weakness because it doesn't negatively affect me. In order to rid my life of negativity, I have to take it somewhere else. And maybe others will recycle it into positivity and make use of it :)
Resources:
Wikipedia - Irritable Bowel Syndrome
Pub Med Health - Irritable Bowel Syndrome
Pub Med Health - Dicyclomine
NDDIC - Irritable Bowel Syndrome
Wednesday, January 18, 2012
Times are Hard
"I hate square one... I don't want to go back. Times are hard; I believe prayer can help me, but it's been a long time coming and I'm losing hope... Maybe the turmoil will give way to one night's reprieve and my secret strength will pull me through the rest." --Nina
I just wanted to give a brief description of what the past two days have been like for me. I've been waiting for my day off (tomorrow) to see a general practitioner about my illness and a possible gastroenterologist referral for Celiac Disease testing. I'm not really nervous about the visit itself, because I feel that I have developed a better understanding of my body and symptoms through blogging and paying more attention. With the worsening of my symptoms over the last couple of months, I've really had no choice but to confront the illness head-on. It has really consumed my life. I spend all of my time, thoughts and efforts on it; It has become my main focus and my top priority. It's the least I can do for myself after so long. My only fear is remaining undiagnosed longer than I already have. I need a diagnosis before I can ever find relief, and I'm tired of waiting to feel normal while my symptoms worsen. This fear has taken over my mind this week - it's hard to describe.
The past couple of days have been bad for me. I've had to work both days, and each night I've had painful bowel cramping like I have to go really bad but my body isn't ready to. So I just wait out the cramping until I'm able to use the bathroom, which lasts late into the night. The mornings become shorter due to lack of rest. And as a result of being stuck in the bathroom in the mornings, too, I've been late to work both days. When I got to work I felt extremely weak and have been feeling the urge to faint. I've been shaky, and today I ended up in the bathroom dry-heaving within the first thirty minutes of my shift. Then I've have to feel the bowel cramping all day at work too, which has been miserable. I've found myself hunched over in pain several times, unable to stand up straight. But when your 'higher-ups' expect you to be a top performer at all times, and you don't have a name for your illness... there is no room for excuses. I wanted to 'call in' sick this morning, but I don't like the idea of 'calling in' unless you're 'can't-get-out-of-bed' sick. Luckily my job was light-duty anyways and I started feeling better towards the end of my shift.
By the time I get home, I'm feeling awful again. I go straight to the couch and lay down while my special guy brings me the Pepto-Bismol. My appetite has decreased, so I have to push myself to eat so I won't have hunger pains on top of everything else. I've lost weight, which is very noticeable on my small frame. Everyday on break at work I've had people questioning my food choices, poking fun at what I've been eating or shouting "Surely you aren't on a diet, you skinny thing!" It's very obnoxious, to say the least. Although I keep to myself, people still find a way to be rude.
In other news, I did go to Big Lots today and was excited to find several all-natural, gluten free products on their shelves. I was in there for an hour reading ingredients and browsing, and I found some cool stuff that I'm really interested in trying. I haven't been confirmed as being intolerant of gluten, but after that pita bread incident, I don't want to take any chances of doing more damage to my body. Better to be safe than sorry.
I don't know what's going on with my body, and I'm sure a diagnosis is further down the road than I'd like it to be, but I'm still welcoming the bright side of life and finding things to smile about everyday. I know that as my body weakens my mind gets stronger, which means that there is still some good in this.
Wish me compassion and understanding from intelligent doctors!
I just wanted to give a brief description of what the past two days have been like for me. I've been waiting for my day off (tomorrow) to see a general practitioner about my illness and a possible gastroenterologist referral for Celiac Disease testing. I'm not really nervous about the visit itself, because I feel that I have developed a better understanding of my body and symptoms through blogging and paying more attention. With the worsening of my symptoms over the last couple of months, I've really had no choice but to confront the illness head-on. It has really consumed my life. I spend all of my time, thoughts and efforts on it; It has become my main focus and my top priority. It's the least I can do for myself after so long. My only fear is remaining undiagnosed longer than I already have. I need a diagnosis before I can ever find relief, and I'm tired of waiting to feel normal while my symptoms worsen. This fear has taken over my mind this week - it's hard to describe.
The past couple of days have been bad for me. I've had to work both days, and each night I've had painful bowel cramping like I have to go really bad but my body isn't ready to. So I just wait out the cramping until I'm able to use the bathroom, which lasts late into the night. The mornings become shorter due to lack of rest. And as a result of being stuck in the bathroom in the mornings, too, I've been late to work both days. When I got to work I felt extremely weak and have been feeling the urge to faint. I've been shaky, and today I ended up in the bathroom dry-heaving within the first thirty minutes of my shift. Then I've have to feel the bowel cramping all day at work too, which has been miserable. I've found myself hunched over in pain several times, unable to stand up straight. But when your 'higher-ups' expect you to be a top performer at all times, and you don't have a name for your illness... there is no room for excuses. I wanted to 'call in' sick this morning, but I don't like the idea of 'calling in' unless you're 'can't-get-out-of-bed' sick. Luckily my job was light-duty anyways and I started feeling better towards the end of my shift.
By the time I get home, I'm feeling awful again. I go straight to the couch and lay down while my special guy brings me the Pepto-Bismol. My appetite has decreased, so I have to push myself to eat so I won't have hunger pains on top of everything else. I've lost weight, which is very noticeable on my small frame. Everyday on break at work I've had people questioning my food choices, poking fun at what I've been eating or shouting "Surely you aren't on a diet, you skinny thing!" It's very obnoxious, to say the least. Although I keep to myself, people still find a way to be rude.
In other news, I did go to Big Lots today and was excited to find several all-natural, gluten free products on their shelves. I was in there for an hour reading ingredients and browsing, and I found some cool stuff that I'm really interested in trying. I haven't been confirmed as being intolerant of gluten, but after that pita bread incident, I don't want to take any chances of doing more damage to my body. Better to be safe than sorry.
I don't know what's going on with my body, and I'm sure a diagnosis is further down the road than I'd like it to be, but I'm still welcoming the bright side of life and finding things to smile about everyday. I know that as my body weakens my mind gets stronger, which means that there is still some good in this.
Wish me compassion and understanding from intelligent doctors!
Tuesday, January 17, 2012
Possible Lead On Mystery Illness?
After the Fodmap Elimination trial, the first thing I reintroduced was Gluten. I ate a few of Saltine crackers one morning, no big deal. That afternoon, I great deal on a bag of pita bread. When I returned home, I decided to try a piece by itself. It tasted good, but half way through the thing I got extremely nauseous. To the point where all I wanted to do was lay down and take Pepto Bismol. It was more intense than the daily nausea I'm used to. But I wasn't 100% sure if i should blame the pita bread. So when I felt better, I decided to try it again to be sure. I ate a couple more pieces and the next thing I know I'm just as sick as before, except this time it lasts until the morning! It was very unexpected because I've never noticed a problem while eating regular, homemade lunch-meat sandwiches on whole wheat/whole grain bread. But upon reading the pita bread ingredients, "high gluten flour" was first on the list, which got my 'wheels' turning...
I already knew that the intolerance of Gluten is immediately related to Celiac Disease, but that was the extent of my knowledge of CD. So the detective that I am, I hopped on Google and started typing away.
The symptoms of Celiac Disease (with asterisks by the ones that I've experience/am experiencing) include:
Details:
"A growing portion of diagnoses are being made in asymptomatic persons as a result of increased screening; the condition is thought to affect between 1 in 1,750 and 1 in 105 people in the United States. Celiac disease is caused by a reaction to gliadin, a prolamin (gluten protein) found in wheat.... Upon exposure to gliadin, and specifically to three peptides found in prolamins, the enzyme tissue transglutaminase modifies the protein, and the immune system cross-reacts with the small-bowel tissue, causing an inflammatory reaction. That leads to a truncating of the villi lining the small intestine (called villous atrophy). This interferes with the absorption of nutrients, because the intestinal villi are responsible for absorption. The only known effective treatment is a lifelong gluten-free diet. While the disease is caused by a reaction to wheat proteins, it is not the same as wheat allergy." --Wikipedia
Complications (Celiac Complications):
Malnutrition
Loss of calcium and bone density
Lactose Intolerance
Cancer
Neurological complications
If you read my story, then you know that there a lot of similarities between CD and what I've been experiencing for the past few years. I have several other symptoms that I didn't mention in my story that line up perfectly with CD as well. I have a strong feeling that I may have finally found my diagnosis, so much so that I've set up an appointment with a general practitioner with hope that he will be able to prepare a Celiac test for me. I'm trying not to get my hopes up. I have a BIG problem with needles, and the first step is a blood test. So I'm really nervous about that. But the second step of CD diagnosis is an Endoscopy, which freaks me out even more, mainly because I don't know what to expect but for other more obvious reasons as well... But if it wasn't worth it to me, I wouldn't do it. I am pretty stubborn, after all.
I'm trying not to get my hopes up, but I want so badly to be diagnosed. Some might think that a diagnosis is bad news, but if you've suffered from a mysterious illness for a long time then you understand why it isn't. I already know I have a problem, so a doctor telling me I do makes no difference. A diagnosis is a solve to a painful mystery; I can't help but to crack a hopeful smile :)
Since the initial gluten reaction, I have removed gluten from my diet entirely. I've felt a lot better, but I'm still experiencing stomach distention and some nausea. My constipation has further decreased but I'm now experiencing bowel cramps, and my stool consistency has changed significantly. But as I've read online, the damage that has been done to my intestinal lining could be the cause of my remaining symptoms. Nothing is certain, but a lead is a lead.
I am, however, inclined to believe that if the tests come back negative, and I reach a dead end once again, I might just self-destruct. I'm not sure if I'll be able to handle the disappointment . I know it is a likely outcome, but I've invested too much in this to react nonchalantly.
Until then, I have high hopes, crossed-fingers and many prayers. Wish me luck!
Resources:
Wikipedia
Celiac Disease Foundation
Celiac Disease
Mayo Clinic
I already knew that the intolerance of Gluten is immediately related to Celiac Disease, but that was the extent of my knowledge of CD. So the detective that I am, I hopped on Google and started typing away.
The symptoms of Celiac Disease (with asterisks by the ones that I've experience/am experiencing) include:
Classic symptoms may include:
- Abdominal cramping, intestinal gas ** (Bloating vs. Distention)
- Distention and bloating of the stomach **
- Chronic diarrhea or constipation (or both) **
- Steatorrhea – fatty stools
- Anemia – unexplained, due to folic acid, B12 or iron deficiency (or all)
- Unexplained weight loss with large appetite or weight gain **
- Dental enamel defects
- Osteopenia, osteoporosis
- Bone or joint pain **
- Fatigue, weakness and lack of energy **
- Bruising easily **
- Infertility – male/female
- Depression or Anxiety **
- Mouth ulcers **
- Delayed puberty
- Tingling or numbness in hands or feet **
- Migraine headaches
Some long-term conditions that can result from untreated CD:
- Iron deficiency anemia
- Early onset osteoporosis or osteopenia
- Vitamin K deficiency associated with risk for hemorrhaging
- Vitamin and mineral deficiencies
- Central and peripheral nervous system disorders - usually due to unsuspected nutrient deficiencies
- Pancreatic insufficiency
- Intestinal lymphomas and other GI cancers (malignancies)
- Gall bladder malfunction
- Neurological manifestations
Details:
"A growing portion of diagnoses are being made in asymptomatic persons as a result of increased screening; the condition is thought to affect between 1 in 1,750 and 1 in 105 people in the United States. Celiac disease is caused by a reaction to gliadin, a prolamin (gluten protein) found in wheat.... Upon exposure to gliadin, and specifically to three peptides found in prolamins, the enzyme tissue transglutaminase modifies the protein, and the immune system cross-reacts with the small-bowel tissue, causing an inflammatory reaction. That leads to a truncating of the villi lining the small intestine (called villous atrophy). This interferes with the absorption of nutrients, because the intestinal villi are responsible for absorption. The only known effective treatment is a lifelong gluten-free diet. While the disease is caused by a reaction to wheat proteins, it is not the same as wheat allergy." --Wikipedia
Complications (Celiac Complications):
Malnutrition
Loss of calcium and bone density
Lactose Intolerance
Cancer
Neurological complications
If you read my story, then you know that there a lot of similarities between CD and what I've been experiencing for the past few years. I have several other symptoms that I didn't mention in my story that line up perfectly with CD as well. I have a strong feeling that I may have finally found my diagnosis, so much so that I've set up an appointment with a general practitioner with hope that he will be able to prepare a Celiac test for me. I'm trying not to get my hopes up. I have a BIG problem with needles, and the first step is a blood test. So I'm really nervous about that. But the second step of CD diagnosis is an Endoscopy, which freaks me out even more, mainly because I don't know what to expect but for other more obvious reasons as well... But if it wasn't worth it to me, I wouldn't do it. I am pretty stubborn, after all.
I'm trying not to get my hopes up, but I want so badly to be diagnosed. Some might think that a diagnosis is bad news, but if you've suffered from a mysterious illness for a long time then you understand why it isn't. I already know I have a problem, so a doctor telling me I do makes no difference. A diagnosis is a solve to a painful mystery; I can't help but to crack a hopeful smile :)
Since the initial gluten reaction, I have removed gluten from my diet entirely. I've felt a lot better, but I'm still experiencing stomach distention and some nausea. My constipation has further decreased but I'm now experiencing bowel cramps, and my stool consistency has changed significantly. But as I've read online, the damage that has been done to my intestinal lining could be the cause of my remaining symptoms. Nothing is certain, but a lead is a lead.
I am, however, inclined to believe that if the tests come back negative, and I reach a dead end once again, I might just self-destruct. I'm not sure if I'll be able to handle the disappointment . I know it is a likely outcome, but I've invested too much in this to react nonchalantly.
Until then, I have high hopes, crossed-fingers and many prayers. Wish me luck!
Resources:
Wikipedia
Celiac Disease Foundation
Celiac Disease
Mayo Clinic
Tuesday, January 10, 2012
Trapped
My work schedule changed a bit this week, and within the past two days I've only had about 5-6 hours of sleep including a 2 1/2 hour nap I took after work yesterday. As a result, my food intake has been kinda rough. It was the last (and most painful) day of my fodmap elimination trial. My bowels loosened up and of course it couldn't go smoothly, it had to kick my butt. I'm bloated again (it never fully went down) and it's not getting any better. Everything about today has been full of pain, frustration and exhaustion. Early this morning when I finally forced myself out of bed for work, I was so sick to my stomach that I started dry heaving/gagging like crazy. But my stomach was empty and nothing came of it.
At work, while my co-workers worked at a regular pace, laughing and having fun, I was suffering silently in the backdrop - struggling to stay focused and keep up, hiding my swollen belly as not to look pregnant and start hurtful rumors. I insist on wearing a loose shirt when I'm so bloated - I've had some people criticize my 'belly' to each other and, while I pretended not to hear out of humiliation, it didn't feel good. So I try not to draw attention to it.
My biggest vexation is to appear and feel physically or emotionally weaker than the average person. It's the one thing I'm constantly trying to avoid and distract from. So when I'm sick, hurting, upset... no one knows. I'm not sure why I'm like that... I didn't used to be this way. Maybe it's pride. And it's good in that it combats the feeling of vulnerability, but it's not very helpful when everyone around you holds you to the bar you set for yourself on one of your good days. One month, your illness let up just enough for you to do a fantastic job at work, now you're damned if you don't perform at a steady rate. When you're trying your best to keep up with a disadvantage, but it's just not good enough. These are the things that devastate me.. that go against everything I want for myself.
The perfect end to a perfect day: I hurt my knee about 3 months ago training in Hapkido, and it's been randomly tricky ever since. Every once in a while, pain will spike through my knee and it locks up. As usual, I just swallowed the pain and didn't really bring it up. I had a class today, and I always train a bit before I even go. But one wrong move, and it was all over for me. I couldn't do much else (as far as training goes) after that. My special guy agreed that I shouldn't go to class tonight, and maybe not for a couple of weeks until my knee feels better. He was right, but I got so frustrated. To feel so weak and pathetic contradicts who I am inside. I feel like a strong, competent person trapped in this fragile shell. It's what I love about martial arts - it makes me feel powerful. But here I sit, waiting for my guy to return from Hapkido class, wondering what I'm missing and wishing I could keep up - knowing that I'm capable of so much more.
It's now 9pm, and I made it through the day. But my spirit is broken... wrapped up in myself and all the commotion in my body. It may seem self-centered to the outsider looking in, but to me it's survival. What happens next...? I think a weekend trip to my hometown in Tennessee is in order. Maybe there is something there waiting for me... to make me feel alive!
At work, while my co-workers worked at a regular pace, laughing and having fun, I was suffering silently in the backdrop - struggling to stay focused and keep up, hiding my swollen belly as not to look pregnant and start hurtful rumors. I insist on wearing a loose shirt when I'm so bloated - I've had some people criticize my 'belly' to each other and, while I pretended not to hear out of humiliation, it didn't feel good. So I try not to draw attention to it.
My biggest vexation is to appear and feel physically or emotionally weaker than the average person. It's the one thing I'm constantly trying to avoid and distract from. So when I'm sick, hurting, upset... no one knows. I'm not sure why I'm like that... I didn't used to be this way. Maybe it's pride. And it's good in that it combats the feeling of vulnerability, but it's not very helpful when everyone around you holds you to the bar you set for yourself on one of your good days. One month, your illness let up just enough for you to do a fantastic job at work, now you're damned if you don't perform at a steady rate. When you're trying your best to keep up with a disadvantage, but it's just not good enough. These are the things that devastate me.. that go against everything I want for myself.
The perfect end to a perfect day: I hurt my knee about 3 months ago training in Hapkido, and it's been randomly tricky ever since. Every once in a while, pain will spike through my knee and it locks up. As usual, I just swallowed the pain and didn't really bring it up. I had a class today, and I always train a bit before I even go. But one wrong move, and it was all over for me. I couldn't do much else (as far as training goes) after that. My special guy agreed that I shouldn't go to class tonight, and maybe not for a couple of weeks until my knee feels better. He was right, but I got so frustrated. To feel so weak and pathetic contradicts who I am inside. I feel like a strong, competent person trapped in this fragile shell. It's what I love about martial arts - it makes me feel powerful. But here I sit, waiting for my guy to return from Hapkido class, wondering what I'm missing and wishing I could keep up - knowing that I'm capable of so much more.
It's now 9pm, and I made it through the day. But my spirit is broken... wrapped up in myself and all the commotion in my body. It may seem self-centered to the outsider looking in, but to me it's survival. What happens next...? I think a weekend trip to my hometown in Tennessee is in order. Maybe there is something there waiting for me... to make me feel alive!
Sunday, January 8, 2012
A Little More Fodmap Elimination Info
The town where I live is a lot less populated than the one I was raised in. I'm used to seeing more health/organic food stores; this town just doesn't have any. It's something the surrounding areas are lacking as well. But I have been able to find a few things to get me through the fodmap elimination trial, mostly at Kroger because they actually have an organic food 'section' in their stores.
During the trial, one thing I did have trouble with was just... getting started. I wasn't sure if I was doing it right, and I didn't know how to go about the planning and preparation of meals that would sufficiently satisfy my hunger. Most of the time, when buying the fodmap-free foods, I was just taking a risk because I had no idea what I was doing. I didn't know if what I was buying was going to taste good enough to eat or if I was just going to waste my money. And organic food is expensive! But some of the things I ended up buying and eating are as follows:
White Rice Bread
Chicken
Turkey Bacon
Eggs
Tuna
Gluten-Free Oats
Bananas, Grapes and Strawberries
Rice Crispies Cereal
Pamela's Products Chunky Chocolate Chip Gourmet All Natural Cookies
White Rice Bread: I'm just gonna be honest... It tasted really bad. It was not yummy at all, it has a very gritty texture that just didn't make me think of 'bread'. Basically, you can tell it's not what you're used to eating, which is expected - can't really complain, it's only an alternative. BUT a trick I learned pretty early on is to always lightly toast the bread before eating it, even if it's for a sandwich. It changes the texture to more of a regular bread-like consistency.
Chicken: Something I ate often was roasted or grill chicken along side roasted/grilled fodmap-free veggies and potatoes or fodmap-free rice. You just have to be careful how you season it. And you don't have a lot of options when it comes to dipping sauces, if you're into that.
Turkey Bacon: It's great! It defintely met my 'breakfast food needs'. Tastes a lot like the real thing, just healthier... and fodmap-free! I ate it with my fried eggs several times, and even made a BLT on my day 4.
Gluten-free Oats: I bought them later on in the trial, and they were a little pricey; I think I payed around 6 bucks for 2lbs. But I was really wanting some oatmeal. Add some sugar and fodmap-free milk and you're good to go for a sweet and filling breakfast, lunch or (if you're weird like me) dinner too!
Rice Crispies Cereal: It was a great replacement cereal for my usual choices because it's crispy, and I added a little sugar and slices of banana which almost felt a bit self-indulgent.
But do be careful, because some brands contain high fructose corn syrup. I almost bought an off-brand before I double checked the ingredients and noticed that I missed one. Kelloggs Rice Crispies is the one that does not contain high fructose corn syrup, but of course always double check anyways.
Pamela's Products Chunky Chocolate Chip Gourmet All Natural Cookies: These are amaaazzziinngg! I don't know if it's because I was delirious from having all yummy baked goods banned from my diet, but when I discovered these babies at Kroger I was more than willing to pay $4 for 9 cookies just to get my fill. And boy was it worth it. I expected them to taste like tree-bark, but they were actually really good and bursting with chocolate chips. And microwaving them makes them even yummier! Actually, I just finished my second box... yikes. But the brand has many other yummy products too! I'm now a big fan of Pamela's Products, just for the sheer genius behind the company. To me, that is impressive. Go Pamela!
I just wanted to give you an idea of what I bought and ate throughout the trial, now that I'm nearing the end. And if your interested in looking into and trying it, maybe this will help you get started too :)
Resources:
Pamela's Products
Pamela's Products on Facebook
During the trial, one thing I did have trouble with was just... getting started. I wasn't sure if I was doing it right, and I didn't know how to go about the planning and preparation of meals that would sufficiently satisfy my hunger. Most of the time, when buying the fodmap-free foods, I was just taking a risk because I had no idea what I was doing. I didn't know if what I was buying was going to taste good enough to eat or if I was just going to waste my money. And organic food is expensive! But some of the things I ended up buying and eating are as follows:
White Rice Bread
Chicken
Turkey Bacon
Eggs
Tuna
Gluten-Free Oats
Bananas, Grapes and Strawberries
Rice Crispies Cereal
Pamela's Products Chunky Chocolate Chip Gourmet All Natural Cookies
White Rice Bread: I'm just gonna be honest... It tasted really bad. It was not yummy at all, it has a very gritty texture that just didn't make me think of 'bread'. Basically, you can tell it's not what you're used to eating, which is expected - can't really complain, it's only an alternative. BUT a trick I learned pretty early on is to always lightly toast the bread before eating it, even if it's for a sandwich. It changes the texture to more of a regular bread-like consistency.
Chicken: Something I ate often was roasted or grill chicken along side roasted/grilled fodmap-free veggies and potatoes or fodmap-free rice. You just have to be careful how you season it. And you don't have a lot of options when it comes to dipping sauces, if you're into that.
Turkey Bacon: It's great! It defintely met my 'breakfast food needs'. Tastes a lot like the real thing, just healthier... and fodmap-free! I ate it with my fried eggs several times, and even made a BLT on my day 4.
Gluten-free Oats: I bought them later on in the trial, and they were a little pricey; I think I payed around 6 bucks for 2lbs. But I was really wanting some oatmeal. Add some sugar and fodmap-free milk and you're good to go for a sweet and filling breakfast, lunch or (if you're weird like me) dinner too!
Rice Crispies Cereal: It was a great replacement cereal for my usual choices because it's crispy, and I added a little sugar and slices of banana which almost felt a bit self-indulgent.
But do be careful, because some brands contain high fructose corn syrup. I almost bought an off-brand before I double checked the ingredients and noticed that I missed one. Kelloggs Rice Crispies is the one that does not contain high fructose corn syrup, but of course always double check anyways.
Pamela's Products Chunky Chocolate Chip Gourmet All Natural Cookies: These are amaaazzziinngg! I don't know if it's because I was delirious from having all yummy baked goods banned from my diet, but when I discovered these babies at Kroger I was more than willing to pay $4 for 9 cookies just to get my fill. And boy was it worth it. I expected them to taste like tree-bark, but they were actually really good and bursting with chocolate chips. And microwaving them makes them even yummier! Actually, I just finished my second box... yikes. But the brand has many other yummy products too! I'm now a big fan of Pamela's Products, just for the sheer genius behind the company. To me, that is impressive. Go Pamela!
I just wanted to give you an idea of what I bought and ate throughout the trial, now that I'm nearing the end. And if your interested in looking into and trying it, maybe this will help you get started too :)
Resources:
Pamela's Products
Pamela's Products on Facebook
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