So I have mentioned before about the effects of Celiac disease/Gluten Intolerance before on my life. If I would have known about this before my life would have turned out quite differently. Let me tell you how it affected me, it affects people differently so one persons case can be quite different than another.
In fact let me quickly tell you how it effects my little niece. Her mother was worried about her from just about the beginning of her life. She couldn't breast feed her very well so she had to bottle feed, let me tell you the stuff that they put in powdered baby formula is nothing anyone should be drinking. The formula she was using included wheat ingredients, and my little niece started to have terrible diarrhea and rashes on her bottom. Plus she could never seem to get enough food. So her mom started to feed her rice cereal, which was contaminated by gluten ingredients. She has always had terrible diarrhea and rashes, which have always worried my sister in law. The doctor couldn't explain it so he gave her creams to use, but nothing helped. So after I found out about my gluten intolerance I suggested taking her daughter off of all common allergens. After about two weeks she had her first normal bowel movement and the rash cleared up on her bum.
This has not been the case for me, although it has been more insidious than you can imagine.
Here is how it has affected me. I cannot remember a time when I was not depressed, when my world was not cloudy and I was not dizzy. In fact I remember it being that way when I climbed down from the crib that I shared with my brother to see what my mom was doing in the other room. Despite the depression (which has always been the worst in the winter), I was an imaginative and creative kid. I had fun with my brother and cousins, but I had to deal with the depression.
My older brother has Autism, the signs started appearing when he was about two, he was on a medication for a long time called "Dilantin." They had me on it as well for a while because I had a couple of seizures, but they eventually decided I didn't need it and took me off of it. I remember thinking that there was indeed something wrong with me and that I should get to take the medicine too. My younger brothers have ADD/ADHD, and I think my little sister has to deal with things the same way I did.
My older brother has clear behaviors that you can point to and see that he needs help. He has high anxiety levels (in fact he is on medication right now to deal with it), he has facial twitches, he gets in this mode where he has to work on a project and will not leave it alone. He has other "ticks" as well, like twitching his hands, but he has actually been able to control his twitches through mental effort. I have had some of the same problems, high anxiety, some facial twitches (though no one would notice), and compulsions for projects.
Depression has probably been one of the worst things about this disease for me. One of my early memories is walking on the cement border to the playground at Preschool/Headstart and singing the song "The Sun Will Come Out Tomorrow," from the movie "Annie," and crying. I also remember having a difficult time making friends.
I was depressed during elementary school. I had a difficult time focusing, making friends, dealing with my anxiety, I had a lot of free floating anxiety. I would hide in the girls bathroom by the stalls on a ledge in-between the stalls and the window, because I felt safe there. There were "mean girls," that liked to pick on me because I was different.
The only times that I was really happy were during during the summer playing with my brother and cousins or during the winter, playing in the snow.
I felt dizzy all of the time, I felt tired, I was depressed and I thought it was because I couldn't make any friends. I was uneasy with too much open space around me (I liked to be sitting or leaning against something), I was also uneasy with too many people around me.
I always felt like I was trying to run to catch up to everyone socially and in general. I wasn't dumb, I was just very introspective. I was the kid wandering around in Kindergarten during story time because I wanted to paint. I was the quiet one, I wasn't really shy, I think that the other kids didn't know what to think of me so they just left me alone.
I hated school, although I did well, I just didn't like being there. I would walk the six blocks back to our house and find books to teach myself with. I liked being safe at home where no one would tease or bother me. The anxiety, the dizziness and the depression stayed with me throughout elementary school, then junior high.
In high school things got so bad for me that I started to walk home after second period, stumble home more like. I was always exhausted and I couldn't run, I could never run (I remember the humiliation of it well, every PE from elementary school on was terrible for me). When I got home I would sleep, sleep and sleep it was a terrible blackness that wouldn't go away.
I was always trying to figure out what I had done wrong, what was wrong with me. I was always psychoanalyzing myself to try and clear up whatever "issues" I had that were making me depressed, it didn't work. I tried to get my mom to bring me to a psychiatrist, even in elementary school, but I never saw one (thank goodness, they would probably just have given me medication).
Then there were the doctors visits to try and figure out what was wrong with me. One doctor decided I had Mononucleosis, another gave me Prozac. I took Prozac once felt like killing myself and never touched it again. I also remember the day that I noticed the tinnitus, which is a ringing in the ears. I was sitting in a totally silent room, probably during my sophomore year, taking a test, suddenly I heard a terrible sharp pitched ringing. I looked around, then decided it was the TV in the room, I tried to nudge my cousin for a sympathetic person to complain to about the noise. I thought everyone would have noticed it for sure, but strangely no one seemed to notice it, it was surreal looking around with the ringing sound driving me nuts and no one else moving or complaining about it. That class period was torture, I was glad when it was over. The doctor decided that a nasal spray would help with that, but that one just dried out my sinuses and made me sick because I could taste it in my mouth. Later on when I was an adult I tried to see if the doctor could help me with the dizziness. He had me do tests, like touching my nose and walking in a straight line. Then he prescribed a medication to get rid of the "excess water" in my body which he theorized was causing pressure to build up in my ears to cause dizziness. That medicine also made me ill so I didn't take it either.
In high school I tried to change how I dressed and acted, because nothing had worked before. I got incredibly confused and out of control. If I had been in my right mind I would never have gotten involved with the guy that I eventually married, for a lot of reasons, but I did and I got pregnant at 16.
Then my life was a blur, I finished high school, then went to college. I got an associates degree in behavioral science, then decided to keep going and got a bachelors degree in Accounting. During this time I also had another baby, then four miscarriages (which the doctors couldn't explain, but are very common in cases of gluten intolerance/Celiac disease) then another baby, then later 6 more miscarriages before getting pregnant with my fourth baby, a little girl.
In 2006 I made a decision that drastically changed my life (I guess again). I decided that I wanted to lose about 10-15 pounds, so I joined Weight Watchers. The program worked really well for me and I lost the weight, but I felt like a Robot. I was basically eating very little fat, very little meat, tons of vegetables, "spray butter," and wheat products. I exercised, but later on would be too fatigued to stand and would have to sit down, this was towards the end of getting my bachelors degree. I was working at a temporary job and I had to work up the energy to walk from place to place so I would walk around as quick as possible.
After I finished that job, I decided to try something new, walnuts on my cereal. How could that make a difference? Well, I had been restricting my fat in order to lose weight. So the omega-3's from the walnuts made me feel uncommonly happy. In fact this was after the birth of my little girl and my mom came by with a salad. I was sitting in my living room and looked around, in the best mood that I had been in for a long time. So I started to recommend walnuts to everyone who would listen, it was really the omega-3's.
Then I went through a really tough time trying to figure out what food I should eat. I wanted to be a Vegan, so I went out and bought TVP, or Textured Vegetable Protien and some nutritional yeast, not-chicken nuggets and the like. Plus I decided to try and cook everything myself.
So I started to make bran muffins, to be extra healthy and all. But things started to backfire, big time. I had planned on helping my dad make a garden that year, but I was actually becoming progressively weaker and weaker. The bran muffins made me extremely constipated and bloated. I backed off, only to have the same reaction to the TVP. One week I made TVP lasagna, and then TVP spaghetti and then the TVP meatballs really through me over the edge. The ringing in my ears became worse then ever, I became extremely angry at my mom and my sister (I can't remember why now). I was banging my hands on my bed and screaming in anger at them but knew it was irrational. I felt so sick I thought I had food poisoning, I lay on my bed and I really thought I was dying, I actually was very close. I didn't want to go to the hospital because I didn't have insurance and couldn't cover the bill. I figured food had got me there and food would get me out (I had become very distrustful of doctors at this point).
I finally called my pediatrician, he was my doctor from the time I was born and still see's my kids. He thought that I had alkalosis from changing the protein source in my diet too quickly, so he told me to breath into a paper bag, that didn't really work. So I decided to drink vinegar (too alkaline, drink something acidic), that seemed to help a bit.
I remember walking around, too weak almost to lift my baby in her car seat. Doing the shopping, and walking very slowly. I went over to my mom's and sat at their table, the same one my Grandpa sat at for 5 years after my Grandma died. I sat there, so, so weak, people walked by and I felt like crying. I told my mom that I felt like I was going to die and she thought I was being over dramatic. I decided to go home and lay in my bed, I laid there, still breast feeding and taking care of my baby. I talked to my friend who was a health nut like me and she told me to avoid eating wheat/gluten. I gave it a chance and almost immediately I started feeling better.
My mind was clearing up, the "brain fog" started to go away, the anxiety started to disappear even my baby started to act different. I had a terrible time with anxiety and compulsions before but those started to go away too. As an example of these compulsions I remember one time when we were supposed to go to my cousins baby's birthday. But things felt out of control for me at that time. So although I knew the party was at a certain time I was cleaning and cleaning, I meant to go but kept putting off getting ready. When I left the house I thought I would just hop over to the store to see if they had a high chair and they did so I bought it and I went home and couldn't leave until I put it together and I never got to the party. Things like that happened all of the time, I would stay home and clean, I would work on a project sometimes all night and all day. I could clean all night, I couldn't leave it. Now although a dirty house bugs me, I don't feel compelled to stay up all night cleaning it.
I was always super organized, yet disorganized at the same time, because I could not get the things done that I needed to do or wanted to do. I have learned a lot though because I love to read, but I would feel compelled to read all night until I finished. Now I can put down a book and finish it another time instead of staying up all night to read it.
After a couple of weeks on the diet my depression cleared up quite a bit, my breathing became easier, and this summer I ran for the first time for 10 minutes on the trail back to my home.
I didn't have the proof that it was gluten and my mom and family thought I was nuts!! But I knew it was, and no one could tell me otherwise. Now it's strange when I do something that I have done before because I feel different, like walking through the store, it is amazing to compare the difference. Where once the store felt chaotic and I had to hold onto the shopping cart and focus really hard to get through it, now I can stroll and see the whole store clearly and do what I need to.
Going to the hospital is not as intimidating, the doctors office, driving, doing Christmas things together, going sledding. Everything is different, because I can think clearly. For a long time I was dazed and unsure of myself, not sure what to do with my time and not sure how to reach my goals. In fact a lot of my goals had been compulsive before. I just felt I "had" to learn this or that, so it was a weeding process to see what I really want to do, what I really liked.
I also had a food sensitivity test done, which also helped me figure out which foods to avoid to feel better. I finally paid for an independent lab test to find out if I was "really" gluten intolerant and that came back positive so I have "proof." But my mom still continues to distrust my word on a lot of things because she is on Weight Watchers and can't imagine slathering butter all over her green beans like I do. I learned that a lot of different cultures around the world eat a very healthy diet without counting calories and worrying like Americans do and it works for me. I usually stay around 130 pounds, but I have gained a few because of the M/C.
So this is where the title of my post comes in. I was looking in the mirror the other day, I sat down on the counter and looked into my own eye's, someone once told me they could see the green in them. It was surreal because I was looking at someone who had been masked by an unseen disease. I saw the real me, and I realized that I wouldn't have the life that I have if I hadn't have had this disease, I cried because of the irony. I wouldn't be married to my husband, I wouldn't have these children, in fact it was like waking up with a family that you didn't consciously decide to have (although I love them).
Someone once told me though about the difference in tree's and people who have been exposed to adversity. Tree's that grow in a fertile field with all they need in water and nutrients, have shallow roots. When a strong wind blow's, the tree will fall because it didn't have to dig it's roots down too deep. The same thing happens to people, those that grow up with little challenges will sometimes be blown over by a big challenge. Where as tree's that grow up having to fight for their "lives" grow strong and tall and their roots are deep. People too, grow strong through adversity.
I am glad that I have had the chance to grow strong, though in some way's I have to try and figure out how to live again because everything is new again, but I am glad for the challenge.
Now it's really late, and I just want to wish you all a good night.
~Strawberry Girl
In fact let me quickly tell you how it effects my little niece. Her mother was worried about her from just about the beginning of her life. She couldn't breast feed her very well so she had to bottle feed, let me tell you the stuff that they put in powdered baby formula is nothing anyone should be drinking. The formula she was using included wheat ingredients, and my little niece started to have terrible diarrhea and rashes on her bottom. Plus she could never seem to get enough food. So her mom started to feed her rice cereal, which was contaminated by gluten ingredients. She has always had terrible diarrhea and rashes, which have always worried my sister in law. The doctor couldn't explain it so he gave her creams to use, but nothing helped. So after I found out about my gluten intolerance I suggested taking her daughter off of all common allergens. After about two weeks she had her first normal bowel movement and the rash cleared up on her bum.
This has not been the case for me, although it has been more insidious than you can imagine.
Here is how it has affected me. I cannot remember a time when I was not depressed, when my world was not cloudy and I was not dizzy. In fact I remember it being that way when I climbed down from the crib that I shared with my brother to see what my mom was doing in the other room. Despite the depression (which has always been the worst in the winter), I was an imaginative and creative kid. I had fun with my brother and cousins, but I had to deal with the depression.
My older brother has Autism, the signs started appearing when he was about two, he was on a medication for a long time called "Dilantin." They had me on it as well for a while because I had a couple of seizures, but they eventually decided I didn't need it and took me off of it. I remember thinking that there was indeed something wrong with me and that I should get to take the medicine too. My younger brothers have ADD/ADHD, and I think my little sister has to deal with things the same way I did.
My older brother has clear behaviors that you can point to and see that he needs help. He has high anxiety levels (in fact he is on medication right now to deal with it), he has facial twitches, he gets in this mode where he has to work on a project and will not leave it alone. He has other "ticks" as well, like twitching his hands, but he has actually been able to control his twitches through mental effort. I have had some of the same problems, high anxiety, some facial twitches (though no one would notice), and compulsions for projects.
Depression has probably been one of the worst things about this disease for me. One of my early memories is walking on the cement border to the playground at Preschool/Headstart and singing the song "The Sun Will Come Out Tomorrow," from the movie "Annie," and crying. I also remember having a difficult time making friends.
I was depressed during elementary school. I had a difficult time focusing, making friends, dealing with my anxiety, I had a lot of free floating anxiety. I would hide in the girls bathroom by the stalls on a ledge in-between the stalls and the window, because I felt safe there. There were "mean girls," that liked to pick on me because I was different.
The only times that I was really happy were during during the summer playing with my brother and cousins or during the winter, playing in the snow.
I felt dizzy all of the time, I felt tired, I was depressed and I thought it was because I couldn't make any friends. I was uneasy with too much open space around me (I liked to be sitting or leaning against something), I was also uneasy with too many people around me.
I always felt like I was trying to run to catch up to everyone socially and in general. I wasn't dumb, I was just very introspective. I was the kid wandering around in Kindergarten during story time because I wanted to paint. I was the quiet one, I wasn't really shy, I think that the other kids didn't know what to think of me so they just left me alone.
I hated school, although I did well, I just didn't like being there. I would walk the six blocks back to our house and find books to teach myself with. I liked being safe at home where no one would tease or bother me. The anxiety, the dizziness and the depression stayed with me throughout elementary school, then junior high.
In high school things got so bad for me that I started to walk home after second period, stumble home more like. I was always exhausted and I couldn't run, I could never run (I remember the humiliation of it well, every PE from elementary school on was terrible for me). When I got home I would sleep, sleep and sleep it was a terrible blackness that wouldn't go away.
I was always trying to figure out what I had done wrong, what was wrong with me. I was always psychoanalyzing myself to try and clear up whatever "issues" I had that were making me depressed, it didn't work. I tried to get my mom to bring me to a psychiatrist, even in elementary school, but I never saw one (thank goodness, they would probably just have given me medication).
Then there were the doctors visits to try and figure out what was wrong with me. One doctor decided I had Mononucleosis, another gave me Prozac. I took Prozac once felt like killing myself and never touched it again. I also remember the day that I noticed the tinnitus, which is a ringing in the ears. I was sitting in a totally silent room, probably during my sophomore year, taking a test, suddenly I heard a terrible sharp pitched ringing. I looked around, then decided it was the TV in the room, I tried to nudge my cousin for a sympathetic person to complain to about the noise. I thought everyone would have noticed it for sure, but strangely no one seemed to notice it, it was surreal looking around with the ringing sound driving me nuts and no one else moving or complaining about it. That class period was torture, I was glad when it was over. The doctor decided that a nasal spray would help with that, but that one just dried out my sinuses and made me sick because I could taste it in my mouth. Later on when I was an adult I tried to see if the doctor could help me with the dizziness. He had me do tests, like touching my nose and walking in a straight line. Then he prescribed a medication to get rid of the "excess water" in my body which he theorized was causing pressure to build up in my ears to cause dizziness. That medicine also made me ill so I didn't take it either.
In high school I tried to change how I dressed and acted, because nothing had worked before. I got incredibly confused and out of control. If I had been in my right mind I would never have gotten involved with the guy that I eventually married, for a lot of reasons, but I did and I got pregnant at 16.
Then my life was a blur, I finished high school, then went to college. I got an associates degree in behavioral science, then decided to keep going and got a bachelors degree in Accounting. During this time I also had another baby, then four miscarriages (which the doctors couldn't explain, but are very common in cases of gluten intolerance/Celiac disease) then another baby, then later 6 more miscarriages before getting pregnant with my fourth baby, a little girl.
In 2006 I made a decision that drastically changed my life (I guess again). I decided that I wanted to lose about 10-15 pounds, so I joined Weight Watchers. The program worked really well for me and I lost the weight, but I felt like a Robot. I was basically eating very little fat, very little meat, tons of vegetables, "spray butter," and wheat products. I exercised, but later on would be too fatigued to stand and would have to sit down, this was towards the end of getting my bachelors degree. I was working at a temporary job and I had to work up the energy to walk from place to place so I would walk around as quick as possible.
After I finished that job, I decided to try something new, walnuts on my cereal. How could that make a difference? Well, I had been restricting my fat in order to lose weight. So the omega-3's from the walnuts made me feel uncommonly happy. In fact this was after the birth of my little girl and my mom came by with a salad. I was sitting in my living room and looked around, in the best mood that I had been in for a long time. So I started to recommend walnuts to everyone who would listen, it was really the omega-3's.
Then I went through a really tough time trying to figure out what food I should eat. I wanted to be a Vegan, so I went out and bought TVP, or Textured Vegetable Protien and some nutritional yeast, not-chicken nuggets and the like. Plus I decided to try and cook everything myself.
So I started to make bran muffins, to be extra healthy and all. But things started to backfire, big time. I had planned on helping my dad make a garden that year, but I was actually becoming progressively weaker and weaker. The bran muffins made me extremely constipated and bloated. I backed off, only to have the same reaction to the TVP. One week I made TVP lasagna, and then TVP spaghetti and then the TVP meatballs really through me over the edge. The ringing in my ears became worse then ever, I became extremely angry at my mom and my sister (I can't remember why now). I was banging my hands on my bed and screaming in anger at them but knew it was irrational. I felt so sick I thought I had food poisoning, I lay on my bed and I really thought I was dying, I actually was very close. I didn't want to go to the hospital because I didn't have insurance and couldn't cover the bill. I figured food had got me there and food would get me out (I had become very distrustful of doctors at this point).
I finally called my pediatrician, he was my doctor from the time I was born and still see's my kids. He thought that I had alkalosis from changing the protein source in my diet too quickly, so he told me to breath into a paper bag, that didn't really work. So I decided to drink vinegar (too alkaline, drink something acidic), that seemed to help a bit.
I remember walking around, too weak almost to lift my baby in her car seat. Doing the shopping, and walking very slowly. I went over to my mom's and sat at their table, the same one my Grandpa sat at for 5 years after my Grandma died. I sat there, so, so weak, people walked by and I felt like crying. I told my mom that I felt like I was going to die and she thought I was being over dramatic. I decided to go home and lay in my bed, I laid there, still breast feeding and taking care of my baby. I talked to my friend who was a health nut like me and she told me to avoid eating wheat/gluten. I gave it a chance and almost immediately I started feeling better.
My mind was clearing up, the "brain fog" started to go away, the anxiety started to disappear even my baby started to act different. I had a terrible time with anxiety and compulsions before but those started to go away too. As an example of these compulsions I remember one time when we were supposed to go to my cousins baby's birthday. But things felt out of control for me at that time. So although I knew the party was at a certain time I was cleaning and cleaning, I meant to go but kept putting off getting ready. When I left the house I thought I would just hop over to the store to see if they had a high chair and they did so I bought it and I went home and couldn't leave until I put it together and I never got to the party. Things like that happened all of the time, I would stay home and clean, I would work on a project sometimes all night and all day. I could clean all night, I couldn't leave it. Now although a dirty house bugs me, I don't feel compelled to stay up all night cleaning it.
I was always super organized, yet disorganized at the same time, because I could not get the things done that I needed to do or wanted to do. I have learned a lot though because I love to read, but I would feel compelled to read all night until I finished. Now I can put down a book and finish it another time instead of staying up all night to read it.
After a couple of weeks on the diet my depression cleared up quite a bit, my breathing became easier, and this summer I ran for the first time for 10 minutes on the trail back to my home.
I didn't have the proof that it was gluten and my mom and family thought I was nuts!! But I knew it was, and no one could tell me otherwise. Now it's strange when I do something that I have done before because I feel different, like walking through the store, it is amazing to compare the difference. Where once the store felt chaotic and I had to hold onto the shopping cart and focus really hard to get through it, now I can stroll and see the whole store clearly and do what I need to.
Going to the hospital is not as intimidating, the doctors office, driving, doing Christmas things together, going sledding. Everything is different, because I can think clearly. For a long time I was dazed and unsure of myself, not sure what to do with my time and not sure how to reach my goals. In fact a lot of my goals had been compulsive before. I just felt I "had" to learn this or that, so it was a weeding process to see what I really want to do, what I really liked.
I also had a food sensitivity test done, which also helped me figure out which foods to avoid to feel better. I finally paid for an independent lab test to find out if I was "really" gluten intolerant and that came back positive so I have "proof." But my mom still continues to distrust my word on a lot of things because she is on Weight Watchers and can't imagine slathering butter all over her green beans like I do. I learned that a lot of different cultures around the world eat a very healthy diet without counting calories and worrying like Americans do and it works for me. I usually stay around 130 pounds, but I have gained a few because of the M/C.
So this is where the title of my post comes in. I was looking in the mirror the other day, I sat down on the counter and looked into my own eye's, someone once told me they could see the green in them. It was surreal because I was looking at someone who had been masked by an unseen disease. I saw the real me, and I realized that I wouldn't have the life that I have if I hadn't have had this disease, I cried because of the irony. I wouldn't be married to my husband, I wouldn't have these children, in fact it was like waking up with a family that you didn't consciously decide to have (although I love them).
Someone once told me though about the difference in tree's and people who have been exposed to adversity. Tree's that grow in a fertile field with all they need in water and nutrients, have shallow roots. When a strong wind blow's, the tree will fall because it didn't have to dig it's roots down too deep. The same thing happens to people, those that grow up with little challenges will sometimes be blown over by a big challenge. Where as tree's that grow up having to fight for their "lives" grow strong and tall and their roots are deep. People too, grow strong through adversity.
I am glad that I have had the chance to grow strong, though in some way's I have to try and figure out how to live again because everything is new again, but I am glad for the challenge.
Now it's really late, and I just want to wish you all a good night.
~Strawberry Girl
1 comment:
Amazing, I like the part in the end about the trees. I think I need to eat more Omega-3's, I have ground up flax, but I always forget to put it in my food. I don't think I have any food allergies/intolerances and I'm thankful for that.
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