The other day I was walking through the mall with my mother, we'd gone on a mother-daughter-shopping-bonding-spree. As we were talking we both noticed this beautiful child, a little girl, couldnt be more than 1 year old, new to the walking business and in a cute red dress. She was running (or attempting to, probably tottering would be a better description), and looking behind her. An older boy (who I assumed was her brother) was running after her making scary faces and playing mock-catch with her. All the time she was looking behind her and I guess she was acting it, but she had a horrified look on her face and tried to run faster. And as is the case with all toddlers she tripped on her own feet and fell down. But before she hit the floor, a man caught her. I assumed the man to be her father because as she was being lifted up, a childish look of amazement came up on her face and when she saw her savior, a huge grin lifted the corners of her mouth and she let out the cutest childish giggle I'd heard in a while.
Then it hit me...most of us are just like that little girl, looking behind us at all the things that scare/hurt/bother us. We forget to look in front of us and we stumble. Some of us are lucky to have saviors that pick us up before we fall and hurt ourselves, others aren't so lucky.
You might be wondering where all that fits into feeling sick. Again, I will be speaking from my own experience, and I might be generalising but bear with me please! I told you about how sick I'd felt and how many doctors I'd seen. And yes I'd gotten over it, and now I know what's wrong, blah blah. But I have to be honest and admit, I'm always scared. They say the mind does not keep vivid memories of pain. You know you felt terrible when you had that (fit in whatever incident in your life has given you the most excurciating experience you ever had), but which if you can honestly REMEMBER what it was like, bring it back again? You can't! They say that's one way mothers can give birth again, because their memories of labor pains aren't as vivid as the real thing. And that's obviously a good thing. But sometimes it's not so good.
After my diagnosis, and after I went gluten free, a lot of my symptoms got better, notably the pain. It receded, and rarely popped in to visit. But I was still scared. A little bit of pain or feeling unwell would send me back to my bubble. I was so scared of feeling bad again that I would stress over it. And generally the stress made things worse; if I'd ignored that feeling it would have been there for maybe 10-15 mins before it went away. But stress is the food of many physical (and mental) ailments. Plus, in my head all that was the trigger for even worse things to come. And I just shut myself away.
Before I got sick, I was fairly social. I won't say I was a party animal, but i liked to hang out with my friends. Whenever a plan was in motion I was involved in it, or was following it and going out. When I got sick, I just didn't know what to tell people. The "I'm not feeling well" card had gone way beyond it's expiry date, and I didn't know what to tell the people around me. I didn't even know what was wrong! Plus, in our society, pain is an irrelevant thing, you have to rise above it and "stop being such a baby" (but more on that in another blog). I won't say that was what was said to me, but I felt like people were thinking that. I felt others thought I was craving for attention. So I just closed up, locked myself in a small sphere and only allowed a handful of people in. I declined invitations from friends to go out, I really wasn't feeling well and on the rare occassions when I was I just didn't feel upto going out. Slowly, the circle of people around me dwindled. And it is my fault, I admit it.
Now that I am better, and that I can go out and not be plagued with fatigue and pain I still haven't reconnected with the people I lost along the way. One, I was embarrassed (still am actually) that I let them go, and didn't share what was happening to me with them. Two, a part of me still fears a relapse, and I don't feel upto declining all offers I get all over again. Three, I'm still healing, both physically and emotionally. I need sometime alone to understand, be grateful, and to figure out how I'm going to go about things now. I know its been more than a month since my diagnosis but it hasn't been an uneventful one. That is something I would prefer not to share at this moment of time. This is why I hadn't blogged anything for a while.
I've been looking behind me all this time, terrified of all that had plagued me. And I tripped, I'm still on the floor actually, but I am slowly getting up and looking forward. I haven't found my savior yet, but there isn't anything in front of me that scares me, so I guess I will look forward and deal with things as they come.
There isn't much of a thought of the day. But let me tell you, looking behind makes you miss out on many good things and blessings that come your way. What I'd been missing out on? I hadn't had a seriously bad day (one which I needed to stay in bed, felt miserable in, or one in which I had to cancel plans with the friends that are around me), in more than 2 to 3 weeks now (Knocks on every wood surface in the vicinity!). And I only realized that yesterday! So look ahead, and look all the good things straight in the face and ENJOY them!!!
Sunday, August 9, 2009
Wednesday, August 5, 2009
The Silver Lining
People always talk about the brighter side of things, of looking at that silver lining, and most of the time it's just a bunch of nonsense coming out of people who don't know better. I do. I've been through the darkest clouds and the raging storms. And I've survived it! I came out to tell you that there IS a silver lining somewhere.
I won't preach and tell you to look around you and to search for it, because again, that's just a bunch of C***. You know those silver linings? You don't find them, they find you, and in the most unexpected ways too! You'll look at me and ask, what are your silver linings? You've got CD! Bring me the cheerful aspect of that little condition (and you'd probably say it sarcastically). My blog, this blog, is a silver lining. At least I see it that way! I love to talk, I love to learn new things, and I love sharing what I learn with the people around me. Admittedly, I never thought I'd be educating people about a health condition, but that's a start.
I've also began taking better care of my health, and not in that "I-want-to-look-like-the-model-in-the-magazine-way". I genuinely care about what I eat, when I eat and how well my body deals with what I eat. And it's not just about the gluten, it's about everything that I do eat. I don't think I would have ever done this SERIOUSLY if I hadn't gotten ill. In the past I dabbled a bit with healthy eating and what-not, but never stuck to it seriously because I never really had anything to worry about. People all around me were eating anything and everything, processed refined stale food and they were doing well. I was 20, what did I have to worry about?
It takes a lot to get to the silver lining, allow me to regale you with one of my tales in search of gluten-free food. I find that story funny now; wasn't so funny to me back then.
It was the very first time I went food-shopping, gluten-free food shopping. I was back home in Abu-Dhabi and was lucky enough to have a friend, Fadi, to help me out. I really wasn't sure where to start! We hopped on to Abella, a hypermarket that carries a lot of western products which we assumed be a safe start. We get out of the car, and walk into the place. Fadi goes up to the clerk and asks, " Is there a gluten-free food section here?". The clerk looks confused and replies, " Sir, you mean glue?". Most people would find that hilarious and would probably burst out laughing. Most people do when I tell them the story now. GLUE? In food???
Anyhow, we undersood that we were going to have a long shopping spree and that things were not as simple as we first thought. There was no special food section. We just had to hunt, literally, in the aisles. The gluten-free foodswere hidden in between all the regular ones. Now I understood what my nutritionist meant when she said "LABELS! Always read them". It took us around an hour to buy a bunch of stuff, and I'm not talking major food items, just crackers and the like. Our next stop was Spinney's, another hypermarket similar to Abella. And the same scenario was repeated. It was really morale deflating, and again, I only came with a couple of things, most of them being snacks and some rice-noodles. My food bill that day tipped 500 dhs. That's a lot of money for nothing much. It's also depressing to know that food shopping wasn't going to be easy anymore.
But in all honesty having Fadi by my side took off a lot of the pressure. I will admit, I was embarrassed, I felt like a freak. And I didn't want to be seen as that sick girl, and he went around asking for me. He kept telling me it would be ok, that I would find things I could eat, that I will eventually fall into a pattern and be comfortable with my condition. Just hearing those words was a relief, because no matter how much you think them just hearing somebody else saying them validates them to you. At least that's what happened to me
That is my other silver lining. Finding out what my friends were like. Discovering all that compassion and understanding and patience in the people that surround you. I don't know about you, but I generally took my friends for granted. I didn't really get to know them, I just knew their basic qualities but never went in depth. And now I do, now I know WHO they are. It's true that sometimes you discover things that aren't that great in people, and sometimes that means that you two can;t be friends anymore and that has happened with me. But for every 1 ex-friend I have I've got 3 who have steadfastly remained at my side, who I know will support me no matter what.
So thank you Fadi, and thank you Friends, you are the biggest silver lining anybody could wish for!
And the though of the day is: Don't hunt down your silver linings. They'll be looking for you, and they WILL find you! Just be patient and live through the turbulence that life throws your way. Mourn, feel sad, but don't let tha destroy you. Once you and the silver lining meet, you'll be all the much stronger!
I won't preach and tell you to look around you and to search for it, because again, that's just a bunch of C***. You know those silver linings? You don't find them, they find you, and in the most unexpected ways too! You'll look at me and ask, what are your silver linings? You've got CD! Bring me the cheerful aspect of that little condition (and you'd probably say it sarcastically). My blog, this blog, is a silver lining. At least I see it that way! I love to talk, I love to learn new things, and I love sharing what I learn with the people around me. Admittedly, I never thought I'd be educating people about a health condition, but that's a start.
I've also began taking better care of my health, and not in that "I-want-to-look-like-the-model-in-the-magazine-way". I genuinely care about what I eat, when I eat and how well my body deals with what I eat. And it's not just about the gluten, it's about everything that I do eat. I don't think I would have ever done this SERIOUSLY if I hadn't gotten ill. In the past I dabbled a bit with healthy eating and what-not, but never stuck to it seriously because I never really had anything to worry about. People all around me were eating anything and everything, processed refined stale food and they were doing well. I was 20, what did I have to worry about?
It takes a lot to get to the silver lining, allow me to regale you with one of my tales in search of gluten-free food. I find that story funny now; wasn't so funny to me back then.
It was the very first time I went food-shopping, gluten-free food shopping. I was back home in Abu-Dhabi and was lucky enough to have a friend, Fadi, to help me out. I really wasn't sure where to start! We hopped on to Abella, a hypermarket that carries a lot of western products which we assumed be a safe start. We get out of the car, and walk into the place. Fadi goes up to the clerk and asks, " Is there a gluten-free food section here?". The clerk looks confused and replies, " Sir, you mean glue?". Most people would find that hilarious and would probably burst out laughing. Most people do when I tell them the story now. GLUE? In food???
Anyhow, we undersood that we were going to have a long shopping spree and that things were not as simple as we first thought. There was no special food section. We just had to hunt, literally, in the aisles. The gluten-free foodswere hidden in between all the regular ones. Now I understood what my nutritionist meant when she said "LABELS! Always read them". It took us around an hour to buy a bunch of stuff, and I'm not talking major food items, just crackers and the like. Our next stop was Spinney's, another hypermarket similar to Abella. And the same scenario was repeated. It was really morale deflating, and again, I only came with a couple of things, most of them being snacks and some rice-noodles. My food bill that day tipped 500 dhs. That's a lot of money for nothing much. It's also depressing to know that food shopping wasn't going to be easy anymore.
But in all honesty having Fadi by my side took off a lot of the pressure. I will admit, I was embarrassed, I felt like a freak. And I didn't want to be seen as that sick girl, and he went around asking for me. He kept telling me it would be ok, that I would find things I could eat, that I will eventually fall into a pattern and be comfortable with my condition. Just hearing those words was a relief, because no matter how much you think them just hearing somebody else saying them validates them to you. At least that's what happened to me
That is my other silver lining. Finding out what my friends were like. Discovering all that compassion and understanding and patience in the people that surround you. I don't know about you, but I generally took my friends for granted. I didn't really get to know them, I just knew their basic qualities but never went in depth. And now I do, now I know WHO they are. It's true that sometimes you discover things that aren't that great in people, and sometimes that means that you two can;t be friends anymore and that has happened with me. But for every 1 ex-friend I have I've got 3 who have steadfastly remained at my side, who I know will support me no matter what.
So thank you Fadi, and thank you Friends, you are the biggest silver lining anybody could wish for!
And the though of the day is: Don't hunt down your silver linings. They'll be looking for you, and they WILL find you! Just be patient and live through the turbulence that life throws your way. Mourn, feel sad, but don't let tha destroy you. Once you and the silver lining meet, you'll be all the much stronger!
Sunday, August 2, 2009
I am not a Saint
If you've read my previous posts you would probably decipher from the language that I am not resenting the fact that I have CD. You would probably read and think that I am very accepting of my situation and that I am reacting well, maybe too well some might think. But let me tell you it wasn't always so.
When I initially got diagnosed I wasn't aware of the depths and compliations of gluten-free eating. I was just happy that I finally had a label for whatever it was that was causing me to be ill. I think my doctor (the gastroentoelogist who diagnosed me with CD) was misinformed. When he broke the news to me, he said I would have to go gluten-free for only 6 month to allow my gut to heal but that after that I would be allowed to eat foods that contained gluten in small amounts so as not to trigger the reactions in my body. In my head I thought "Ok,that kinda sucks. But it's not so bad". Then I went to my nutritionist, Dr. Rana and that's when I realized just how serious CD is. I told about what my doctor had told me, but before I could even finish the sentence she interrupted me, "Absolutely NOT! You should never have any foods that contain gluten ever again. And I mean nothing at all". I was a bit shocked when she'd told me that, but then that shock turned to wonder as she explained to me why exactly she'd told me that (look at my previous post "What DO I eat" for further details".
I left the nutritionist in a daze. Let me tell you one thing about me. I'm not squeamish or queasy, nor am I afraid of taking radical decisions. If a doctor would've told me that they would have to remove my stomach but that I could lead a normal life after that I wouldn't have thought twice about it. But what I was being told is that I have a life-long condition that I have to be very careful with, and that if I slipped up I would get sick again. There was no medication to fix that and no way around it. And that made me angry.
For a while I played the "It's not so bad" card, and the "it could've been worse" one as well. Outside I was smiling, telling people I was fine. But from the inside I was upset. I was an emotional roller-coaster, believing what I was saying at times, and feeling like I was putting a mask at others. I remember one outburst I had with a friend, he was joking about my condition (in attempts to make me feel better) and I was smiling but from the inside I wasn't seeing the humorous side of things. Finally I bursted out "You don't know what it's like. I'm 23, I shouldn't be obsessing about what I eat! I shouldn't be worried that if I eat something wrong I might be getting cancer! Do you know what the rest of your life is when you're 23?!!". I will admit, I was bitter and angry. I was lucky that my friend was sympathetic and was not offended by what I'd said.
I'm better now, I have accepted what I have. I've also began seeing the brighter side of things. But for me to get to where I am now I had to go through mourning. Yes, mourning, there is no other word to describe it. At first it's the shock of the diagnosis. Then it's the anger resentment, then you move on to the depression and finally when you've hit rock-bottom, when you've drained out all of the negativity you begin to accept it. With that acceptance comes the realization that you either do nothing and just "exist" or you try to make things better for yourself. This blog of mine is one of those things.
I've discovered that one of the best ways to finally let go of all the anger and the bitterness is for the people around you to be aware of your condition (and hopefully understanding of it as well). You don't want to go through the frustration of why you can't eat the salad sprinkled with bread crumbs or why you won't be having a bite of the birthday cake and so on and so forth over and over again. I have been lucky to be surrounded by understanding people who, even if they don't quite believe what I say, never push me to eat things I refuse to eat. My mother has been researching CD in her spare time and called me a couple of days ago to tell me she will be trying out new soup recipes in hopes of finding some that are gluten-free AND taste good. She has also banished Maggi as a cooking stock (yes, Maggi is one those well-hidden gluten sources!).
I had to go all the day down before I could go up. I no longer feel bad when the people around me are digging into their breaded, fried, gluten filled food (ok, I'm lying I do feel the occassional tinge, but nothing serious). I actually throw jokes about my condition nowadays, and do not feel bad about it. I have learned to say no to things that harm me without feeling embarassed or feeling like a freak. The best of all? I can honestly say I am not angry anymore, if anything I am grateful that what I have is CD. And I am happy to be talking about this to all of you!
When I initially got diagnosed I wasn't aware of the depths and compliations of gluten-free eating. I was just happy that I finally had a label for whatever it was that was causing me to be ill. I think my doctor (the gastroentoelogist who diagnosed me with CD) was misinformed. When he broke the news to me, he said I would have to go gluten-free for only 6 month to allow my gut to heal but that after that I would be allowed to eat foods that contained gluten in small amounts so as not to trigger the reactions in my body. In my head I thought "Ok,that kinda sucks. But it's not so bad". Then I went to my nutritionist, Dr. Rana and that's when I realized just how serious CD is. I told about what my doctor had told me, but before I could even finish the sentence she interrupted me, "Absolutely NOT! You should never have any foods that contain gluten ever again. And I mean nothing at all". I was a bit shocked when she'd told me that, but then that shock turned to wonder as she explained to me why exactly she'd told me that (look at my previous post "What DO I eat" for further details".
I left the nutritionist in a daze. Let me tell you one thing about me. I'm not squeamish or queasy, nor am I afraid of taking radical decisions. If a doctor would've told me that they would have to remove my stomach but that I could lead a normal life after that I wouldn't have thought twice about it. But what I was being told is that I have a life-long condition that I have to be very careful with, and that if I slipped up I would get sick again. There was no medication to fix that and no way around it. And that made me angry.
For a while I played the "It's not so bad" card, and the "it could've been worse" one as well. Outside I was smiling, telling people I was fine. But from the inside I was upset. I was an emotional roller-coaster, believing what I was saying at times, and feeling like I was putting a mask at others. I remember one outburst I had with a friend, he was joking about my condition (in attempts to make me feel better) and I was smiling but from the inside I wasn't seeing the humorous side of things. Finally I bursted out "You don't know what it's like. I'm 23, I shouldn't be obsessing about what I eat! I shouldn't be worried that if I eat something wrong I might be getting cancer! Do you know what the rest of your life is when you're 23?!!". I will admit, I was bitter and angry. I was lucky that my friend was sympathetic and was not offended by what I'd said.
I'm better now, I have accepted what I have. I've also began seeing the brighter side of things. But for me to get to where I am now I had to go through mourning. Yes, mourning, there is no other word to describe it. At first it's the shock of the diagnosis. Then it's the anger resentment, then you move on to the depression and finally when you've hit rock-bottom, when you've drained out all of the negativity you begin to accept it. With that acceptance comes the realization that you either do nothing and just "exist" or you try to make things better for yourself. This blog of mine is one of those things.
I've discovered that one of the best ways to finally let go of all the anger and the bitterness is for the people around you to be aware of your condition (and hopefully understanding of it as well). You don't want to go through the frustration of why you can't eat the salad sprinkled with bread crumbs or why you won't be having a bite of the birthday cake and so on and so forth over and over again. I have been lucky to be surrounded by understanding people who, even if they don't quite believe what I say, never push me to eat things I refuse to eat. My mother has been researching CD in her spare time and called me a couple of days ago to tell me she will be trying out new soup recipes in hopes of finding some that are gluten-free AND taste good. She has also banished Maggi as a cooking stock (yes, Maggi is one those well-hidden gluten sources!).
I had to go all the day down before I could go up. I no longer feel bad when the people around me are digging into their breaded, fried, gluten filled food (ok, I'm lying I do feel the occassional tinge, but nothing serious). I actually throw jokes about my condition nowadays, and do not feel bad about it. I have learned to say no to things that harm me without feeling embarassed or feeling like a freak. The best of all? I can honestly say I am not angry anymore, if anything I am grateful that what I have is CD. And I am happy to be talking about this to all of you!
Thursday, July 30, 2009
What DO I eat?
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!
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!
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!
Subscribe to:
Posts (Atom)
Posts
