If you've read the previous posts, you'll know that gluten is derived from wheat, barley or rye so people like me should avoid eating bread, pastries, pastas, cookies, cakes, etc. (technically most things baked). It might seem a bit difficult but many people go on carb-free diets so it should be simple, right? Not quite.
You see, gluten is actually a hidden component in many of our everyday lives. Toothpaste for example, some brands contain gluten. Processed meats (like burgers and sausages), packaged soups, soy sauce; all those contain gluten. And I'm just giving you examples here! Some brands of lipstick and lipgloss have gluten in them too, the sticky back of stamps has gluten as well (I'm not sure why!).
Now you'd probably wonder...even if these things have gluten, they must be in traces so it shouldn't hurt if she swallows a little bit of that. How much harm can it do? Let me tell you, my immune system (well anybody with CD's immune system really) doesn't care if it is traces or if I've eaten a whole loaf of gluten-laden bread. It will still react and attack my gut, and I won't be feeling well for a while until my system gets over being glutenized (my friend came up with the term!). So really, it's not worth it taking chances.
What I DO eat are foods that are gluten free such as fresh fruits and vegetables, fresh meats that I get cut and prepared the way I want them as well as gluten-free products made out of corn or rice instead of the usual wheat. There are gluten-free pastas and pizzas and breads and cookies , etc. But these aren't generally found in your local supermarket. I have to go to specialized food markets and hypermarkets to find what I'm looking for. When I first started I called it the hunt for gluten-free food.
I will admit, it wasn't easy. For every 20 kinds of regular glutenized foods I find 1 or 2 that are gluten free. I HAVE to read labels everytime I go food-shopping because I am still in the process of acclamating myself to what foods contain gluten versus what don't. For instance I thought all rice-crackers were safe, I mean they ARE made of rice! But boy was I mistaken...my accidental brush-up with gluten happened last week while I was having my evening cracker snack. Something was off, I wasn' feeling very good after I'd finished eating. I decided to check the ingredients on the package, and lo-and-behold! Wheat germ! So no, not everything made out of rice is gluten-free. I have learned to look at the labels. It either has to say gluten-free product or I have to decipher all the ingredients to make sure that there are no traces of gluten whatsoever. It's a bit of a trying process but it becomes second nature with time and the more you shop the more you know what brands are safe for consumption. But still every once in a while I will have to check the ingredients on my "safe foods" because the manufacturer can change the ingredients without my knowledge and the product might have to be placed on my black-list.
So that's about my food shopping. What about eating outside? I will be honest. The first week after my diagnosis was a nightmare. I work from 8am to 6pm and live alone. A lot of the times I don't have time to cook, also most of my socialization with friends takes place in restaurants and coffee shops, which in this part of the world still have not heard the word gluten and do not cater for CD patients. I was starving that first week, too scared to eat anything, too paranoid to order the simplest of things. But then I went on and researched my options online and now I can make educated choices about what to put on my plate. Mind you, going to fast food restaurants or food-courts in malls limit my choices to almost 1 or 2 (that being the 2 types of 'green' salads they have on the menu, and that too without the sauce). My friends have been supportive about that (Cheers to you guys, and girls!). When food is in the plans (which is 95% of the time) I am asked about my preferences: Where do you want to eat? What can you eat there? Do you prefer we go somewhere else? I know it sounds silly, but just the fact that they care this way and listen to what I have to say is touching beyond words. The first time it happened I swear I got tears in my eyes. It's not easy having CD but it becomes WAY more easier when you've got friends like mine.
I still tend to keep it safe. I eat grilled meats (with minimal dressing), salads (a bigger variety), vegetables, potatoes, fish. It's a huge variety, to me anyway. I go from being limited to one or two "safe-ish" options in a fast food joint to at least 10 or 15 things that I can eat and enjoy. I still have to be a bit picky (I hate that) and ask that whatever is cooked has been made in a clean pot or pan (dangers of cross-contamination). If the restaurant is good andnot so crowded that day, and if you make it clear what you're doing is due to health reasons and not because you're some kind of diva they will generally accomodate you.
So here is my thought for the day. If you have CD, be careful about what you eat, even the traces can hurt you. Oh and remember that some drugs do contain gluten so the next time you're in the hospital or clinic make sure you tell the nurse/doctor that you are gluten intolerant and don't be surprised if they ask you " Come again?", especially if it's a nurse. Just explain patiently that you are allergic to gluten or wheat and to make sure that goes into your file so the doctor does not give you drugs that contain the dreaded component. When you get your drugs ask the pharmacist if they contain gluten, if he/she don't know call the manufacturer. I know it's a hassle but as I said it becomes second nature after a while. Make educated food choices and do not succumb to peer pressure when they tell you "it's just a little bit" or "a bit won't hurt you" because it will!
To you who are able to glutenize yourselves without harm please be mindful of your friends if they aren't like you. Do not try to push them into eating something they aren't sure is safe for them, because if it's bad they'll be the ones feeling it, not you!
And please have some patience with us, we know we're picky and believe me it exhausts us too!
Thursday, July 30, 2009
How did I get diagnosed with CD?
The first time I went to my nutritionist, I was talking to her about how much I had gone through in order for me to get diagnosed. She looked at me and told me I was "lucky"! Imagine being told that? She told me about a patient she had who'd been running around for 7 years, jumping from one doctor to another. She'd lost 20 kgs and was too exhausted to do anything. The fact that I got diagnosed in 3 months (she told me) was incredible and, in her experience, unprecedented. So yeah, lucky me!
If you've read about me, you know I'm 23 (and a half...I hate that midway where you're not quite 23, and not quite 24). What you don't know is that I removed my gall bladder at 21. And apparently this is when things started to fall apart. You might want to call it a trigger of sorts.
I will admit that I never had what you'd call a gut made of steel, I wasn't one of those people who could eat from a shabby place and come out of it feeling like I had a good meal. If the food was bad, I'd know because I would feel "off" after eating it. But I was never majorly sick, except for 2 episodes (1 at the age of 15 that lasted 2 months and 1 at the age of 19 that lasted 2 weeks) where I felt the kind of pain that prevents you from eating and causes you to lose weight like you were on some kind of starvation diet (which technically I was).
Even after I had my gall bladder removed, I felt great! I mean I wasn't overly worried I had to undergo such a procedure at the young age of 21. My mother, grandmother and aunt (from my mother's side) all had it removed (granted they were all older, had already had children), but then I was probably genetically predisposed so it wasn't such a big deal. For the record, all the women I mentioned (and many others) lead normal lives after their surgeries. They just have to minimize their fat intake (That's another long story for another blog post!).
I was fine too; for over a year it felt like I was back to normal. Until March of 2009...when my journey through hosptials began. Let me remind you that CD is sometimes triggered by physical trauma such as surgery. I probably had probably been suffering from CD but without any of the symptoms, which is not uncommon.
It started with nausea and moved on to a stomach ache, it soon gave way to IBS symptoms (let's not even go there, a lot of people aren't comfortable talking about bowel movements and their troubles, so I will respecting their fragile states. You can however research IBS online; it is very common and very openly discussed these days, if you feel curious). I went through a series of blood and urine tests that indicated I had an inflammation "somewhere" (please note the somewhere, no doctor was able to tell me WHERE it was), and had to take doses of antibiotics. When that didn't work we moved on to an endoscopy after which I was diagnosed with Gastritis (both in the stomach and the small intestine) and had to take Pariet for over 3 months (I still do sometimes when the pain hits back). When that didn't work we moved on to another doctor who agreed I had Gastritis but went on to diagnose me with IBS.
I was fine for a month after that. Then the pain hit me with full force, no amount of Pariet could alleviate it. No change of diet could take it away. And I'd just swtiched positions in the company I worked in! I couldn't take a sick leave! Not NOW! So I stalled going to the doctor until things just got unbearable, so I went and was told that I had to undergo another endoscopy. I asked what my other options are (don't get me wrong, endoscopies are generally very simple things, and since you're under the influence of anesthetic you don't remember a thing but they're still exhausting and I'd had a bad experience with that particular doctor). And that's when he scheduled a blood test. The results came in 2 days later. I was positive for IgA (the normal level was below 15, mine was 33), and that was how I got diagnosed.
Just note that it took me 13 doctors (not counting the 10 trips to the ER) to know what was wrong with me. Just goes to show that persevarance gets you places!
And to all you people with unexplainable symptoms...I know it's frustrating when people tell you you're overreacting, or that it's all in your head. Or that you're doing it to seek attention. I know what that's like. If you know something is wrong with you, then it probably is (unless you have a manic personality). So go, get a second, a third, fourth, heck, get a fiftieth opinion if that's what it takes. Just DON'T give up!
If you've read about me, you know I'm 23 (and a half...I hate that midway where you're not quite 23, and not quite 24). What you don't know is that I removed my gall bladder at 21. And apparently this is when things started to fall apart. You might want to call it a trigger of sorts.
I will admit that I never had what you'd call a gut made of steel, I wasn't one of those people who could eat from a shabby place and come out of it feeling like I had a good meal. If the food was bad, I'd know because I would feel "off" after eating it. But I was never majorly sick, except for 2 episodes (1 at the age of 15 that lasted 2 months and 1 at the age of 19 that lasted 2 weeks) where I felt the kind of pain that prevents you from eating and causes you to lose weight like you were on some kind of starvation diet (which technically I was).
Even after I had my gall bladder removed, I felt great! I mean I wasn't overly worried I had to undergo such a procedure at the young age of 21. My mother, grandmother and aunt (from my mother's side) all had it removed (granted they were all older, had already had children), but then I was probably genetically predisposed so it wasn't such a big deal. For the record, all the women I mentioned (and many others) lead normal lives after their surgeries. They just have to minimize their fat intake (That's another long story for another blog post!).
I was fine too; for over a year it felt like I was back to normal. Until March of 2009...when my journey through hosptials began. Let me remind you that CD is sometimes triggered by physical trauma such as surgery. I probably had probably been suffering from CD but without any of the symptoms, which is not uncommon.
It started with nausea and moved on to a stomach ache, it soon gave way to IBS symptoms (let's not even go there, a lot of people aren't comfortable talking about bowel movements and their troubles, so I will respecting their fragile states. You can however research IBS online; it is very common and very openly discussed these days, if you feel curious). I went through a series of blood and urine tests that indicated I had an inflammation "somewhere" (please note the somewhere, no doctor was able to tell me WHERE it was), and had to take doses of antibiotics. When that didn't work we moved on to an endoscopy after which I was diagnosed with Gastritis (both in the stomach and the small intestine) and had to take Pariet for over 3 months (I still do sometimes when the pain hits back). When that didn't work we moved on to another doctor who agreed I had Gastritis but went on to diagnose me with IBS.
I was fine for a month after that. Then the pain hit me with full force, no amount of Pariet could alleviate it. No change of diet could take it away. And I'd just swtiched positions in the company I worked in! I couldn't take a sick leave! Not NOW! So I stalled going to the doctor until things just got unbearable, so I went and was told that I had to undergo another endoscopy. I asked what my other options are (don't get me wrong, endoscopies are generally very simple things, and since you're under the influence of anesthetic you don't remember a thing but they're still exhausting and I'd had a bad experience with that particular doctor). And that's when he scheduled a blood test. The results came in 2 days later. I was positive for IgA (the normal level was below 15, mine was 33), and that was how I got diagnosed.
Just note that it took me 13 doctors (not counting the 10 trips to the ER) to know what was wrong with me. Just goes to show that persevarance gets you places!
And to all you people with unexplainable symptoms...I know it's frustrating when people tell you you're overreacting, or that it's all in your head. Or that you're doing it to seek attention. I know what that's like. If you know something is wrong with you, then it probably is (unless you have a manic personality). So go, get a second, a third, fourth, heck, get a fiftieth opinion if that's what it takes. Just DON'T give up!
Wednesday, July 29, 2009
What is Celiac Disease?
So you're reading Celiac Disease- CD, and you're wondering, what on Earth is she talking about? I've never heard of anything like this. What is gluten anyway?
Others have a vague idea about what I'm talking about, but they aren't quite sure about the specifics.
So let me feed your curiousity, and please remember, I am no doctor. What I am about to tell you is strictly through my own research and knowledge.
What is Celiac Disease?
Celiac Disease or CD is a disorder that originates from the body having an intolerance to Gluten. Again, what is gluten? Gluten is a protein found in wheat, rye and barley, which is used in many foods as well as other everyday items of life. But more on that later.
When I say intolerance, I am not talking about your general food allergy reaction where your tongue swells or your skin itches. The intolerance experienced in CD is also through an overreaction of the immune system, but instead of releasing histamines into the blood, the immune system of CD patients moves on to attack their small intestine. Yes, you read that right. Everytime a person eats a food item that contains gluten the immune system does not recognize gluten for what it is and destroys the small villi that are present in the small intestine. (Small biology brush up: Villi are small finger-like structures that cover the inner lining of the small intestine. These villi are the structures that absorb nutrients from the food).
Therefore with the destruction of these villi, people with CD tend to suffer from malnutrition.
What are CD symptoms?
CD patients display a wide range of symptoms: They're exhausted most of the time. They also tend to suffer from diarrhea or constipation (actually many people with CD tend to be misdiagnosed with Irritable Bowel Syndrome or IBS). They also lose a lot of weight because their small intestines are not absorbing the nutrients from the food. In children the malnutrition can result in stunted growth and irritibality. In adults, other effects of malnutrition can be seen such as osteoporosis, anemia and arthritis just to name a few. The reasons symptoms of CD are all over the chart are because of the variables between the patients. Their age group, the amount of gluten they consume and the degree of damage to the small intestine all play a roll in the symptoms.
How do people get CD?
So now that we have explained what it is, the next step would be to explain how people get it. Don't worry, if a person with CD sneezes in your face you won't be getting anything from them (except for the flu maybe). CD is a genetic disorder, which means it generally runs in families although you could be suffering from CD without any of your family having suffered from it (like me!).
Although CD is genetic it can remain dormant for years and becomes active due to a physical trauma (like a surgery), or because of an emotional trauma (such as bereavement or severe depression). It is also useful to know that CD is one of the most misdiagnosed diseases in the world.
It was thought that CD was a rare condition, but it is now known that in the States 1 of 133 people will have CD (1 in 22 if a direct family member has it). Yeah, that's a lot of people isn't it?
How does CD get diagnosed?
So how ARE people diagnosed with CD? There are several methods, but I am 100% sure of 2 so I will write about those.
1) Blood Test. This test will measure the amount of IgA in your blood level. What is IgA? It is an antibody that generally protects your body from infections. High levels of IgA are a very good indication of CD, although some patients will have a negative result.
2) A more sure way to test for CD is through an endoscopic biopsy. Endoscopy is a a procedure where a tube-like structure will be inserted through the mouth and moved downwards through the digestive tract to reach the area that needs to be checked. In case of CD that would be the small intestine, where the doctor would take a biopsy (a small tissue sample) and check to see if the villi is damaged. If they are, that is a positive indication of CD.
What is the cure for CD?
Now comes the tricky part. How do you cure CD? Unfortunately, upto the moment of me writing this blog no cure has been found that prevents the antibodies from reacting to gluten. The only way a patient can improve and allow the small intestine to heal is through a strict gluten free diet.
The definition of strict is not variable. It is not like a weight loss diet where a person can be allowed to "cheat" and eat something unhealthy every once in a while. All gluten has to be cut from the diet for good. Even the smallest amounts of gluten ingested cause damage to the small intestine.
Generally following a strict gluten-free diet allows the intestines to heal completely (from 4 to 6 weeks in children, and 4 to 6 months in adults).
If you are diagnosed with CD, do not despair. As one of my friends once pointed out: At least you now know what's wrong.
I've read about people who've suffered for years (some for almost 20-30 years) before getting diagnosed, so just knowing what you have is a relief.
Many people lead healthy normal lives, they just have to be careful around gluten :)
If you don't have CD but know someone who does, please be supportive. The first few days or weeks after the diagnosis may be a bit of a whirlwind, and hopefully with enough support and help that person can get through it.
If you are neither, please keep what I wrote in mind. You never know when you need it!
Others have a vague idea about what I'm talking about, but they aren't quite sure about the specifics.
So let me feed your curiousity, and please remember, I am no doctor. What I am about to tell you is strictly through my own research and knowledge.
What is Celiac Disease?
Celiac Disease or CD is a disorder that originates from the body having an intolerance to Gluten. Again, what is gluten? Gluten is a protein found in wheat, rye and barley, which is used in many foods as well as other everyday items of life. But more on that later.
When I say intolerance, I am not talking about your general food allergy reaction where your tongue swells or your skin itches. The intolerance experienced in CD is also through an overreaction of the immune system, but instead of releasing histamines into the blood, the immune system of CD patients moves on to attack their small intestine. Yes, you read that right. Everytime a person eats a food item that contains gluten the immune system does not recognize gluten for what it is and destroys the small villi that are present in the small intestine. (Small biology brush up: Villi are small finger-like structures that cover the inner lining of the small intestine. These villi are the structures that absorb nutrients from the food).
Therefore with the destruction of these villi, people with CD tend to suffer from malnutrition.
What are CD symptoms?
CD patients display a wide range of symptoms: They're exhausted most of the time. They also tend to suffer from diarrhea or constipation (actually many people with CD tend to be misdiagnosed with Irritable Bowel Syndrome or IBS). They also lose a lot of weight because their small intestines are not absorbing the nutrients from the food. In children the malnutrition can result in stunted growth and irritibality. In adults, other effects of malnutrition can be seen such as osteoporosis, anemia and arthritis just to name a few. The reasons symptoms of CD are all over the chart are because of the variables between the patients. Their age group, the amount of gluten they consume and the degree of damage to the small intestine all play a roll in the symptoms.
How do people get CD?
So now that we have explained what it is, the next step would be to explain how people get it. Don't worry, if a person with CD sneezes in your face you won't be getting anything from them (except for the flu maybe). CD is a genetic disorder, which means it generally runs in families although you could be suffering from CD without any of your family having suffered from it (like me!).
Although CD is genetic it can remain dormant for years and becomes active due to a physical trauma (like a surgery), or because of an emotional trauma (such as bereavement or severe depression). It is also useful to know that CD is one of the most misdiagnosed diseases in the world.
It was thought that CD was a rare condition, but it is now known that in the States 1 of 133 people will have CD (1 in 22 if a direct family member has it). Yeah, that's a lot of people isn't it?
How does CD get diagnosed?
So how ARE people diagnosed with CD? There are several methods, but I am 100% sure of 2 so I will write about those.
1) Blood Test. This test will measure the amount of IgA in your blood level. What is IgA? It is an antibody that generally protects your body from infections. High levels of IgA are a very good indication of CD, although some patients will have a negative result.
2) A more sure way to test for CD is through an endoscopic biopsy. Endoscopy is a a procedure where a tube-like structure will be inserted through the mouth and moved downwards through the digestive tract to reach the area that needs to be checked. In case of CD that would be the small intestine, where the doctor would take a biopsy (a small tissue sample) and check to see if the villi is damaged. If they are, that is a positive indication of CD.
What is the cure for CD?
Now comes the tricky part. How do you cure CD? Unfortunately, upto the moment of me writing this blog no cure has been found that prevents the antibodies from reacting to gluten. The only way a patient can improve and allow the small intestine to heal is through a strict gluten free diet.
The definition of strict is not variable. It is not like a weight loss diet where a person can be allowed to "cheat" and eat something unhealthy every once in a while. All gluten has to be cut from the diet for good. Even the smallest amounts of gluten ingested cause damage to the small intestine.
Generally following a strict gluten-free diet allows the intestines to heal completely (from 4 to 6 weeks in children, and 4 to 6 months in adults).
If you are diagnosed with CD, do not despair. As one of my friends once pointed out: At least you now know what's wrong.
I've read about people who've suffered for years (some for almost 20-30 years) before getting diagnosed, so just knowing what you have is a relief.
Many people lead healthy normal lives, they just have to be careful around gluten :)
If you don't have CD but know someone who does, please be supportive. The first few days or weeks after the diagnosis may be a bit of a whirlwind, and hopefully with enough support and help that person can get through it.
If you are neither, please keep what I wrote in mind. You never know when you need it!
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