When beginning a gluten free lifestyle you have to train yourself to read labels and prevent cross-contamination. It's like forgetting everything you know about products, food, and cooking and starting over from scratch. It even goes as far as getting rid of certain appliances and starting with brand new to avoid contamination. There are things that you don't even realize are affected and it's an overwhelming and daunting task to undertake.
The first major lesson I had to learn was to read labels. In the beginning I wanted to read the labels for the products that seemed most likely to contain wheat, barley, and rye. Those were my first two mistakes. Now most people know gluten is a protein found in wheat, barley and rye but not everyone realizes to also check for the less common grains and the "hybrid" grains that also contain gluten. These include: malt and malt flavoring which is made from barley (maltodextrin is fine), spelt, kamut, graham, triticale and oats (see my note for oats at the end of the post). The second mistake was that specifically wheat and malt are ingredients in a vast array of unsuspecting foods. Malt tends to be a key ingredient in most cereals. It's responsible for making things like Corn Flakes off limits. My favorite is finding wheat as an ingredient in cooking spray. I mean really? Other un-obvious foods include: prepared pudding cups, shredded cheeses, spice mixes, sauces (salad dressings and condiments), and boxed rice dishes. The moral of this lesson is even if you think there is no way a certain product contains gluten check it. And don't check it once and let it go. Companies change ingredients and recipes all the time. In the past few months Lays changed the recipe for some of their chips and some that were gluten free aren't anymore.
The next lesson I had to learn was that certain appliances and cookware are more prone to cause contamination than others. Metal pans like cookie sheets and cake pans and baking stones do not get completely clean so it is not a good idea to use them for both gluten free and gluten containing foods. Wooden spoons are another thing that do not come completely clean. This goes for bread machines too. As long as items are washed thoroughly things like plates, silverware and glassware including glass casserole and serving dishes are safe. If you live in a household that has people consuming gluten I recommend having separate sections for the foods that have had gluten on them and those that haven't.
Another unsuspecting place you can come into contamination are in medications and beauty products. Check labels on all over the counter medications you purchase, even liquids. Most pharmacies, including Walgreens where I go, will mark your account as having to have gluten free. People can still make mistakes though so double check the inactive ingredients. If in doubt there are companies that will custom make medications gluten free. It's going to be expensive but beats the alternative. Gluten products are also used in beauty products from mascara and lipstick to shampoo and conditioner. Lip products are the most likely to be accidentally ingested so they are the most important to ensure are gluten free. Using hypoallergenic brands can help eliminate some of the concern, but it's always best to double check. Research has not found concrete evidence that things like shampoo or mascara can cause a reaction. I know people that have had a reaction, though I have never have. I still choose to use all gluten free products. It's always better to be safe than sorry!
Keeping track of all the labels you have to read and the various grains you have to watch out for is difficult. I carry around cards with grains that are acceptable and grains that are not so I have a cheat sheet. You can purchase these online from various gluten free groups, find a list in every issue of Living Without magazine. If you live in the continental US I have custom cards I created that I would be happy to share with you, I can only send five to one person, so if interested you can send me an email.
OATS: Oats are a huge subject for debate among the gluten free community. Oats in and of themselves do not contain gluten, however, oats are processed in the same grain elevators and stored in the same silos as wheat which causes contamination. Specialty oats are available that are grown and processed to avoid contamination so they are safe for a gluten free diet. Some doctors and patients alike insist that regular oats are acceptable. I experimented with it and after a few months on a consistent gluten free diet I tried oats and I had a reaction. I have thus given oats up except those specifically intended to be gluten free. Though other people claim they do not have a reaction I do not recommend anyone eating them, but at the end of the day it is your choice!
Monday, February 27, 2012
Wednesday, February 22, 2012
Being Defined by a Disease
One of the biggest struggles I face on a daily basis is one that I could not have and did not anticipate. I have found that, especially among young adults, that I am defined solely by my health complications. Having moved to a new place right after being diagnosed with Celiac and then RA I did not have a close knit group of friends and I have found it extremely difficult to build many meaningful friendships with people my own age simply because of my health issues; this is something that has really come to bother me. Perhaps it's from introductions when I first meet someone; the inevitable question I have come to dread is, hands down, "so what do you do?" I have debated for almost two years now how to properly answer that question. The answer doesn't seem terribly complicated: "due to some serious health problems I am on disability", but for some reason this response is a huge obstacle a lot of people can't seem to get past.
I have tossed around a number of theories around as to why exactly this phenomenon occurs. One theory that seems to fit is that people who have never experienced serious medical problems cannot relate. It's fair to say that at twenty five I have had to experience things that people twice my age have not and will not have to experience. Some experiences are hard for people to look past, especially when they cannot relate. Though I cannot blame them, it is an extremely frustrating life experience.
It sounds like the ending to a sappy Hollywood movie, or a cliché, but being sick has made me look at the world differently. It has made me understand what is truly important in life and what isn't. That view of the world is usually reserved for those at the end of their life or those who have faced what seemed to be the end of their life. Again, it sounds like a cliché but it's absolutely true! Taking this into account, sometimes I have a hard time relating to those who do not appreciate and understand the truly important things and people in life.
Understanding why I have a hard time trying to meet new people simply because I am defined by a disease doesn't make it any less frustrating. Sometimes I want to respond to people and say, "I am NOT just a Celiac patient, or an RA patient...I am an actual person who is interested in books, music, movies, politics and life itself," though I really doubt that would have any affect.
Another one of my theories, not just with meeting new people but with members of my own family, is people thinking I am just making up all of my complications. This is especially true for people whose health problems aren't outwardly obvious. When I have a flare of my pancreatitis or am accidentally glutenized (yes, I am making up words) it's not something you can see. If I had a dime for every person who has said to me "well you don't look sick," I wouldn’t be relying on Social Security! I am always tempted to respond, "I guess it's a good thing my disability isn't based on appearances!" I do not know the perfect way to respond to people who do not believe that I have serious health issues except to say that I do everything in my power to remove myself from situations in which I am surrounded by people who not only disrespect me but who disrespect my diseases.
Unfortunately, there is nothing that can be done with these types of people. The people who don't care, or try to care, about the strictness of a Celiac's gluten free diet, are sadly and unfortunately stubborn and hard headed. They're convinced we are all a bunch of hypochondriacs with doctors who love nothing more than to support pharmaceutical companies by writing an endless number of prescriptions. I have family members who have seen my joints during RA flares and still choose to believe I am making it up. As much as I would like to smack them upside the head until they get it, it's not worth the resulting assault charge. And I am not sure they do real gluten free food in prison! :) As hurtful as it is to especially have certain family members not acknowledge the seriousness of my health, the reality is that I cannot change their mind or their actions.
I often ask doctors and people I meet who have serious health problems how to respond to those who question my health problems or treat me like I have the plague; so far, everyone I have asked has given me pretty much one of two answers. One: People just don't know how to relate so they'll ask you how you're feeling to be polite then move on. And two: Some people just don't get it and you can't force someone to understand. Neither answer is very satisfying...nor do I know who to ask to get a better answer.
I would be lying if I told you it was easy to let things go when you know you are being unfairly judged. It's not easy to do, and sometimes it really gets to me and makes me incredibly mad. I have found it helps to tell myself anyone who judges me or shies away from me isn't worth my time anyway. My beagle Barclay helps too, because when I don't feel good he senses it and won't let me out of his sight. I don't think I will ever find an answer because I don't think one exists. Being in this position, the only thing you can really do is rely on those who know that genetic diseases are not contagious!
I have tossed around a number of theories around as to why exactly this phenomenon occurs. One theory that seems to fit is that people who have never experienced serious medical problems cannot relate. It's fair to say that at twenty five I have had to experience things that people twice my age have not and will not have to experience. Some experiences are hard for people to look past, especially when they cannot relate. Though I cannot blame them, it is an extremely frustrating life experience.
It sounds like the ending to a sappy Hollywood movie, or a cliché, but being sick has made me look at the world differently. It has made me understand what is truly important in life and what isn't. That view of the world is usually reserved for those at the end of their life or those who have faced what seemed to be the end of their life. Again, it sounds like a cliché but it's absolutely true! Taking this into account, sometimes I have a hard time relating to those who do not appreciate and understand the truly important things and people in life.
Understanding why I have a hard time trying to meet new people simply because I am defined by a disease doesn't make it any less frustrating. Sometimes I want to respond to people and say, "I am NOT just a Celiac patient, or an RA patient...I am an actual person who is interested in books, music, movies, politics and life itself," though I really doubt that would have any affect.
Another one of my theories, not just with meeting new people but with members of my own family, is people thinking I am just making up all of my complications. This is especially true for people whose health problems aren't outwardly obvious. When I have a flare of my pancreatitis or am accidentally glutenized (yes, I am making up words) it's not something you can see. If I had a dime for every person who has said to me "well you don't look sick," I wouldn’t be relying on Social Security! I am always tempted to respond, "I guess it's a good thing my disability isn't based on appearances!" I do not know the perfect way to respond to people who do not believe that I have serious health issues except to say that I do everything in my power to remove myself from situations in which I am surrounded by people who not only disrespect me but who disrespect my diseases.
Unfortunately, there is nothing that can be done with these types of people. The people who don't care, or try to care, about the strictness of a Celiac's gluten free diet, are sadly and unfortunately stubborn and hard headed. They're convinced we are all a bunch of hypochondriacs with doctors who love nothing more than to support pharmaceutical companies by writing an endless number of prescriptions. I have family members who have seen my joints during RA flares and still choose to believe I am making it up. As much as I would like to smack them upside the head until they get it, it's not worth the resulting assault charge. And I am not sure they do real gluten free food in prison! :) As hurtful as it is to especially have certain family members not acknowledge the seriousness of my health, the reality is that I cannot change their mind or their actions.
I often ask doctors and people I meet who have serious health problems how to respond to those who question my health problems or treat me like I have the plague; so far, everyone I have asked has given me pretty much one of two answers. One: People just don't know how to relate so they'll ask you how you're feeling to be polite then move on. And two: Some people just don't get it and you can't force someone to understand. Neither answer is very satisfying...nor do I know who to ask to get a better answer.
I would be lying if I told you it was easy to let things go when you know you are being unfairly judged. It's not easy to do, and sometimes it really gets to me and makes me incredibly mad. I have found it helps to tell myself anyone who judges me or shies away from me isn't worth my time anyway. My beagle Barclay helps too, because when I don't feel good he senses it and won't let me out of his sight. I don't think I will ever find an answer because I don't think one exists. Being in this position, the only thing you can really do is rely on those who know that genetic diseases are not contagious!
Saturday, February 18, 2012
Symptoms that Allude Diagnosis
As I said before I basically have had medical problems my entire life, however, I do not think my Celiac became active until I was about fourteen, after I had sinus surgery. If that is in fact when it became active then it was active for approximately six years before my diagnosis. For most of those six years I did not have typical gastrointestinal symptoms. Instead I was chronically ill, became hypoglycemic, developed endometriosis as well as various other problems. Between such random symptoms and the lack of knowledge about Celiac Sprue it is no doubt that they didn't find that diagnosis for so long. Once I began showing symptoms I was lucky in that diagnosis took about four months. Within those four months I still began to question whether it was all in my head. Having atypical symptoms of anything is one of the most frustrating aspects to health problems and can cause you to second guess yourself.
I started suffering from severe joint pain and swelling a few months after the Celiac diagnosis. They ran blood work for rheumatoid arthritis but it was normal. I tried for months to get in to see a rheumatologist but couldn't find one that would see me since my blood work looked fine and I was so young. It wasn't until I moved to St. Louis and received a referral from my gastroenterologist that I was able to see one, and a good one. She did the blood work but also did a physical exam, took my history, and had x-rays taken. Despite the atypical blood work she diagnosed me with rheumatoid arthritis and began treatment. The time between my diagnosis and when my symptoms began was incredibly frustrating and I started to wonder if I was crazy.
Just this last week I have found myself in a similar frustrating position. A few days ago I had an appointment with my gastroenterologist because I have been having severe heartburn and vomiting blood. I was concerned, of course, which is why I scheduled the appointment, and I assumed I had a bleeding ulcer and/or a hiatal hernia. However, I wasn't as concerned as my doctor was who sent me directly to the hospital and had me admitted. She was concerned of course due to my past medical history, and the fact that I have recently been having headaches severely low iron, which can be a sign of anemia and blood loss. When I arrived at the hospital they immediately ran blood work and scheduled an EGD for the next morning.
I fully expected the results of the EGD to show something, but unfortunately they were absolutely clean. It's beyond frustrating, especially considering I spent a night in the hospital! I know I am not crazy and I know that that my symptoms are real, and I know my doctors believe me, but if they can't find a cause what else can they do? I am stuck back in the limbo of knowing there is something going on and the fact that my doctors cannot find any evidence of a problem.
Where I go from here is more doctors appointments, more tests, and more convincing myself that I am not crazy and something really is going on. I have no idea how long it will take or if I will get better or worse before it gets figured out! Thankfully I have an excellent team of doctors that I fully trust. It doesn't take away from pain and frustration though, but as I have learned many times over now it gets resolved eventually if not by diagnosis than by healing itself.
I think the worst aspect of the atypical symptoms that seem to allude a diagnosis is patience, especially when you don't feel good. You have to focus on the present. You can't dwell on how long you've been sick or how you'll feel tomorrow. I have tried and all it does is drive me crazy. It sounds like one of the world's biggest cliches and something I am currently telling myself, but there is so much truth in it.
I started suffering from severe joint pain and swelling a few months after the Celiac diagnosis. They ran blood work for rheumatoid arthritis but it was normal. I tried for months to get in to see a rheumatologist but couldn't find one that would see me since my blood work looked fine and I was so young. It wasn't until I moved to St. Louis and received a referral from my gastroenterologist that I was able to see one, and a good one. She did the blood work but also did a physical exam, took my history, and had x-rays taken. Despite the atypical blood work she diagnosed me with rheumatoid arthritis and began treatment. The time between my diagnosis and when my symptoms began was incredibly frustrating and I started to wonder if I was crazy.
Just this last week I have found myself in a similar frustrating position. A few days ago I had an appointment with my gastroenterologist because I have been having severe heartburn and vomiting blood. I was concerned, of course, which is why I scheduled the appointment, and I assumed I had a bleeding ulcer and/or a hiatal hernia. However, I wasn't as concerned as my doctor was who sent me directly to the hospital and had me admitted. She was concerned of course due to my past medical history, and the fact that I have recently been having headaches severely low iron, which can be a sign of anemia and blood loss. When I arrived at the hospital they immediately ran blood work and scheduled an EGD for the next morning.
I fully expected the results of the EGD to show something, but unfortunately they were absolutely clean. It's beyond frustrating, especially considering I spent a night in the hospital! I know I am not crazy and I know that that my symptoms are real, and I know my doctors believe me, but if they can't find a cause what else can they do? I am stuck back in the limbo of knowing there is something going on and the fact that my doctors cannot find any evidence of a problem.
Where I go from here is more doctors appointments, more tests, and more convincing myself that I am not crazy and something really is going on. I have no idea how long it will take or if I will get better or worse before it gets figured out! Thankfully I have an excellent team of doctors that I fully trust. It doesn't take away from pain and frustration though, but as I have learned many times over now it gets resolved eventually if not by diagnosis than by healing itself.
I think the worst aspect of the atypical symptoms that seem to allude a diagnosis is patience, especially when you don't feel good. You have to focus on the present. You can't dwell on how long you've been sick or how you'll feel tomorrow. I have tried and all it does is drive me crazy. It sounds like one of the world's biggest cliches and something I am currently telling myself, but there is so much truth in it.
Monday, February 13, 2012
The Importance of a Support System
Every body needs a support system at one point or another in their life. Embarking on a gluten free lifestyle is no different and I have come to learn that there are three types of people: those who are fellow sufferers; those who empathize and try to understand; and those that either just don't get it or care to get it.
I unfortunately didn't know any other Celiacs at the time of my diagnosis. It is an incredibly lonely world! In fact it wasn't until very recently that I have gotten to know other Celiacs and realized I am not alone. Since the opening of New Day Gluten Free, a gluten free cafe here in St. Louis, I go usually once a week, have a tasty turkey sandwich and read a book. It has given me the opportunity to chat with not only other patrons but the owners. For the first time I've been able to talk with people who understand exactly what the disease entails and other health issues that go along with it.
Thankfully Celiac Disease is becoming more well known and things like the internet make it easier to connect with others, purchase food, and check out restaurants. Even simply reading Facebook posts from other sufferers gives some comfort and reassurance that you're not alone.
The type of support I relied on after my diagnosis are those who could only empathize. Since the seriousness and carefulness required in the gluten free lifestyle is hard for people to understand I had friends and family read Gluten Free for Dummies by Danna Korn. It's a great resource, easy to understand, and she adds little bits of humor making it an easy read. After reading it I found that when I would go out to eat with people my friends and family would speak up before I could about my dietary restrictions, or they let me choose the restaurant so I can research it ahead of time.
Finally the third, and worst type. Some people just don't get it. I worked with a man who thought I blew the entire diet totally out of proportion because "a little bit of anything won't hurt you". My best strategy for dealing with such people is to say this "you may not agree or like my needs, but you do have to respect them!" There are always going to be those out there that can't wrap their heads around it so you just have to let it go, and whatever you do DO NOT let them cook for you, and try to resist the urge to slap them. I still have family members that after five years forget about my diet. Unfortunately you cannot control the actions of others!
The best thing you can do is to surround yourself with those that do support you and try to reach out to those that have been there. It's not an easy lifestyle change but it's worth it!
I unfortunately didn't know any other Celiacs at the time of my diagnosis. It is an incredibly lonely world! In fact it wasn't until very recently that I have gotten to know other Celiacs and realized I am not alone. Since the opening of New Day Gluten Free, a gluten free cafe here in St. Louis, I go usually once a week, have a tasty turkey sandwich and read a book. It has given me the opportunity to chat with not only other patrons but the owners. For the first time I've been able to talk with people who understand exactly what the disease entails and other health issues that go along with it.
Thankfully Celiac Disease is becoming more well known and things like the internet make it easier to connect with others, purchase food, and check out restaurants. Even simply reading Facebook posts from other sufferers gives some comfort and reassurance that you're not alone.
The type of support I relied on after my diagnosis are those who could only empathize. Since the seriousness and carefulness required in the gluten free lifestyle is hard for people to understand I had friends and family read Gluten Free for Dummies by Danna Korn. It's a great resource, easy to understand, and she adds little bits of humor making it an easy read. After reading it I found that when I would go out to eat with people my friends and family would speak up before I could about my dietary restrictions, or they let me choose the restaurant so I can research it ahead of time.
Finally the third, and worst type. Some people just don't get it. I worked with a man who thought I blew the entire diet totally out of proportion because "a little bit of anything won't hurt you". My best strategy for dealing with such people is to say this "you may not agree or like my needs, but you do have to respect them!" There are always going to be those out there that can't wrap their heads around it so you just have to let it go, and whatever you do DO NOT let them cook for you, and try to resist the urge to slap them. I still have family members that after five years forget about my diet. Unfortunately you cannot control the actions of others!
The best thing you can do is to surround yourself with those that do support you and try to reach out to those that have been there. It's not an easy lifestyle change but it's worth it!
Thursday, February 9, 2012
The Strange New World of Gluten Free Living
After my doctor gave me the Celiac diagnosis I returned home with that deer in the headlights look. It was one of those slow motion movie moments with flashes of pizza, doughnuts, and brownies. Before being allowed to dwell on all the foods that were being ripped from my fingertips my cousin Lee grabbed her keys and said "let's head to Wild Oats and find you foods you can eat!"
To this day I am so thankful she did that, and I would HIGHLY recommend EVERYONE that is newly diagnosed with any dietary change to head to Wild Oats, Whole Foods, Trader Joe's, etc before you let yourself get wrapped up in all the things you can no longer have. It seems obvious that dwelling on the negatives is a waste of time and will make coping more difficult, however, when faced with not just a dietary change, but an entire lifestyle change, there is no room for contemplating the past and the unfairness of it all! (This is so much easier said than done, I know!)
Now most of the food I purchased that day rivaled plywood in the taste department, but it was a start. I had to learn to read labels in an instant to distinguish which foods are naturally gluten free versus those that are always a no no. It was like being thrown into the ocean and told to swim or die. I also came to the realization upon seeing wheat flour listed as an ingredient in cooking spray that there is an apparent over supply of wheat in this country and not enough demand causing them to throw it into random products!
At first I found it easier to focus on foods that were naturally gluten free like fruits and vegetables, but decided to give the nutritionist my doctor recommended a try. I only saw the nutritionist once and she gave me a few tips on healthy alternatives to gluten and dairy and suggested I try a Chinese herb that worked as a pro-biotic and was supposed to accelerate the healing process. This herb cost me about $125/bottle and I took 3-4 pills a few times a day.
In hindsight I should never have fallen for this ploy. I blame it on being ignorant and overwhelmed by my new life. Just a week or two into my "magic" herbs I began having the same excruciating stomach pains again. I was sick, frustrated, and confused about where the contamination was coming from. I ruled things out one by one when it came time for me to look into the herbs. I remember thinking to myself surely a nutritionist that was supposed to help me adjust to a new gluten free lifestyle would not give me herbs that were made from wheat flour, but sure enough, she did.
It took some research to figure it out. The entire bottle was written in Chinese. When I did I was absolutely furious. I felt so taken advantage of! I called the nutritionist immediately and explained what had happened. They of course apologized and offered me a refund. I wish I could say they learned their lesson, but I am pretty sure their only concern was not being sued. Had I not been so sick I might have pursued a lawsuit, if only to ensure that didn't happen to anyone else. But at the time, my only true concern was survival! I did at least report the incident to my doctor who stopped referring patients to the nutritionist.
After that initial hiccup I slowly began to adjust to gluten free living. It was a slow process and there were definitely bumps along the way, but I slowly started to see changes. My nails started to grow stronger, my hair wouldn't break the way it used to, my skin had more color and I wasn't tired all the time. Looking back I didn't realize at the time how sick I was until I finally started feeling better. The road ahead would be long and bumpy, but I was on my way!
To this day I am so thankful she did that, and I would HIGHLY recommend EVERYONE that is newly diagnosed with any dietary change to head to Wild Oats, Whole Foods, Trader Joe's, etc before you let yourself get wrapped up in all the things you can no longer have. It seems obvious that dwelling on the negatives is a waste of time and will make coping more difficult, however, when faced with not just a dietary change, but an entire lifestyle change, there is no room for contemplating the past and the unfairness of it all! (This is so much easier said than done, I know!)
Now most of the food I purchased that day rivaled plywood in the taste department, but it was a start. I had to learn to read labels in an instant to distinguish which foods are naturally gluten free versus those that are always a no no. It was like being thrown into the ocean and told to swim or die. I also came to the realization upon seeing wheat flour listed as an ingredient in cooking spray that there is an apparent over supply of wheat in this country and not enough demand causing them to throw it into random products!
At first I found it easier to focus on foods that were naturally gluten free like fruits and vegetables, but decided to give the nutritionist my doctor recommended a try. I only saw the nutritionist once and she gave me a few tips on healthy alternatives to gluten and dairy and suggested I try a Chinese herb that worked as a pro-biotic and was supposed to accelerate the healing process. This herb cost me about $125/bottle and I took 3-4 pills a few times a day.
In hindsight I should never have fallen for this ploy. I blame it on being ignorant and overwhelmed by my new life. Just a week or two into my "magic" herbs I began having the same excruciating stomach pains again. I was sick, frustrated, and confused about where the contamination was coming from. I ruled things out one by one when it came time for me to look into the herbs. I remember thinking to myself surely a nutritionist that was supposed to help me adjust to a new gluten free lifestyle would not give me herbs that were made from wheat flour, but sure enough, she did.
It took some research to figure it out. The entire bottle was written in Chinese. When I did I was absolutely furious. I felt so taken advantage of! I called the nutritionist immediately and explained what had happened. They of course apologized and offered me a refund. I wish I could say they learned their lesson, but I am pretty sure their only concern was not being sued. Had I not been so sick I might have pursued a lawsuit, if only to ensure that didn't happen to anyone else. But at the time, my only true concern was survival! I did at least report the incident to my doctor who stopped referring patients to the nutritionist.
After that initial hiccup I slowly began to adjust to gluten free living. It was a slow process and there were definitely bumps along the way, but I slowly started to see changes. My nails started to grow stronger, my hair wouldn't break the way it used to, my skin had more color and I wasn't tired all the time. Looking back I didn't realize at the time how sick I was until I finally started feeling better. The road ahead would be long and bumpy, but I was on my way!
The First Diagnosis
People have been encouraging me for quite a while to share my experiences. As you can see I have finally relented. Let me first start by telling you all a little about myself and why I want share my story...
I am 25 years old and I live in St. Louis, MO. Due to my various medical conditions I have been out of work since April 2010, have had to quit school and have been placed on disability. This was definitely not the life I planned on or envisioned for myself! But as most of you are well aware life is never as you expect it and you have to adapt to survive.
I met with the gastroenterologist and he ordered an EGD (esophagogastroduodenoscopy), which is where under anesthesia they insert a camera down your esophagus into your stomach and your small intestine to look for abnormalities and signs of disease. After the procedure he went over the results of the EGD and the biopsies he took and explained there were no abnormalities. Nothing to explain the "stomach flu" type symptoms I had been having for about 6 weeks. He then proceeded to tell me based on my weight loss that it was all in my head or that I was bulimic and claiming to have a medical condition to cover it up. He subsequently referred me to a psychiatrist
Needless to say I was somewhat less than impressed with him and refused to contact the psychiatrist. I decided to just deal with it and cope as best as I can. My coping lasted only another three weeks before I had to be admitted to the hospital. I had lost close to 20 lbs, (being 5'3'' and only weighing about 125lbs) was dehydrated, and in severe stomach pain. In the hospital I was assigned to a new gastroenterologist and had another EGD. This time instead of finding absolutely nothing she said there was significant sign of disease, my entire abdominal tract looked red and "angry" and there was definitely something going on. Her first impression was Crohn's Disease and I was discharged from the hospital with that initial diagnosis and would follow up at her office a couple weeks later.
I began doing Crohn's research immediately to see what my prognosis would be. In one book I purchased there was a section of diseases that were often misdiagnosed as Crohn's. There was a short little paragraph about Celiac Sprue an autoimmune condition that caused the body to attack and destroy the intestines when the patient consumed gluten, a protein found in wheat, barley and rye. I thought to myself, man that disease would SUCK! and never gave it another thought!
When my follow up appointment came I felt I was prepared to deal with Crohn's and was maintaining a positive outlook. The last thing I was expecting was for her to come into the room, place her hand on my shoulder and say "Angela, you have Celiac Disease. You will need to follow a strict gluten free diet for the rest of your life, starting immediately!" It was like all the wind was knocked out of me! And thus my Celiac and autoimmune journey began!
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