My doctor called me back this afternoon. I had already gotten the other results, but she had run a vitamin B, ANA antibodies (that can indicate autoimmune disorders... mine had been elevated before, and she wanted to check it), and the full celiac panel. The results:
Vitamin B= in good range (I figured this since I've been taking a good complex now for quite some time).
ANA antibodies= negative (good news!)
Celiac Panel= all negative (I'd been off of gluten again for three weeks, so not sure, but then again, I know that many, many people get negatives. I figured I would, too).
I wasn't surprised by this last thing. So, maybe I'm just gluten intolerant. It's hard to say. I figure in the future, I'll order the stool sample kit from Enterolab. Sounds gross, but I'd know if there are antibodies or if I have genes for either GI or CD. It's worth it to me, but it might be a few months.
The doctor said, "keep on your gluten free diet until your symptoms get better."
Hmm. I said, "I'm staying on it, period! It's the only way I feel good."
How about you? Did the celiac panel indicate anything for you if you've had it run?
Friday, January 20, 2012
Thursday, January 19, 2012
My Story, Part IX: The Darkest Before the Dawn and This Is What Normal People Feel Like
In late 2009, we found ourselves in Texas. It was an exciting time due to new job prospects for my husband and in 2010, a passion for writing blossomed for me.
Another benefit there was having a housekeeper whom my family loved who came in bi-monthly. For me, that was a huge deal. Remember, I was tired and fatigued all the time, so most things were not done well when it came to having a clean house. I am sure I've been looked upon as lazy, etc., but I remember staring at a pile of whatever and seeing no way to get it done. I think it was part of the brain fog and the malnutrition that I later found out about.
So, things were a bit better on that front, but the physical stuff went on. I was now up to an even higher weight than before. I remember once we moved, I got a new scale, and I cried at what I saw on it, though I had suspected as much after weighing in at least twice a week for the last few years and monitoring the rise. I could have never envisioned being at that weight. It was like a nightmare, and I didn't know how to wake up from it.
I was still napping most days and struggling to get up in the morning. My right eye jumped most days for not reason I could ascertain, and both eyes were terribly dry. I suffered from migraines about once a week. I'd also noticed that my collarbone was sore, and the bones in my legs ached (ouch! No way to find that out like going to get a pedicure with a friend!). Also, I was short of breath and dizzy. Sometimes, I slurred words or had trouble finding the right one. I wondered if people noticed. I was afraid I was dying. Then, one day in April, I had strange pains around my stomach and back that I couldn't identify, and I felt terrible. I went to the doctor immediately, and I hated going to the doctor back then. Remember, I was fat, and the only answers I'd gotten were eat less, exercise more and don't worry so much even though you feel terrible. You're fat. Of course you feel awful!
"A kidney stone... maybe and your b.p. is elevated, so let's get you on something for that." The doctor gave me pain pills and a new b.p. prescription and sent me on my way with a scheduled ultrasound.
Kidney stones made sense to me. After all, my dad had had a few. But after a day or so, nothing happened. I didn't have the awful pain the doctor had predicted. I took my meds, tried to eat well, and found a new doctor after the ultrasound showed no kidney stone.
In July of 2010, the answers started coming to me. I'd been reading up on the various mysterious ailments I had and thought maybe just maybe I'm gluten intolerant or have celiac. By this point, my sister had been diagnosed with M.S... in her early 30s. I wondered what had caused two autoimmune disorders at such a young age or at least what was linked with such a phenomenon. I started reading more.
Gluten? Could it be a problem for me and maybe for others on both sides of my family? I thought about the insatiable sweet tooth some of us have and how fat some of my relatives are on one side. It is well known that that is just the Gay genes. (Gay is my maiden name). Then I read that massive, unexplained weight gain can be caused by GI or CD (abbreviations).
I went to the doctor and demanded a food allergy test.. IgE. It wasn't the best choice, looking back because it doesn't really determine gluten intolerance or CD, but at least it showed that I had some intolerance to wheat and rye. Hmm. Interesting. The doctor did a big panel of blood work and found that my vitamin B level was insanely low as was my vitamin D-- two other red flags for gluten issues... malabsorption. Also, one of the markers for developing anemia was high as was my ANA number (that indicates autoimmune stuff). My liver count was elevated. My glucose was borderline, and cholesterol was too. The list never seemed to end. But the two numbers on the celiac panel (he didn't do the complete one) were fine. No antibodies. I'll get back to how that doesn't mean much one way or the other later...
The doctor said try cutting out gluten. Eat well and exercise. I did. I came back to him a few months later. My B and D took a while to get up and I was megadosing on D with 50000 units a week for several months. The blood sugar got better. My pains subsided, and the liver enzyme numbers were down. Everything looked better. Oh, and I'd also lost fifteen pounds or more by December with really only changing the gluten issue. I didn't exercise for hours a day or cut calories any more than I'd already been trying to do.
Hmm. Interesting. I rocked on like that for a while with my numbers getting better mostly and my energy and thinking much clearer. My bones were no longer sore now that the vitamin B and D were in normal range, and exercise was easier, too. The only problem was, I still let gluten into my diet once in a while. Slow learner? Yes, that's me. :) Oh, and as you probably know, gluten is everywhere! And when you tell people you don't eat it, they look at you like you've grown three heads. Not the easiest thing to jump into fully, especially without a celiac diagnosis and a doctor saying, "if you eat this, you will die of stomach cancer and/or do other terrible damage to yourself. The only cure is not eating gluten."
Then in February of 2011, I started bleeding and wouldn't stop... I know it's not something guys want to read about, but I'm talking menstrual bleeding. After a few days or being afraid to leave my house for fear of flooding in public, I went to the doctor. He put me on low dose metformin after finding out my hormones were all whacked. He said, "you probably have PCOS... irregular periods, secondary infertility, and now this." I went along with the low dosage for a while.
Then I decided to see an endocrinologist. He upped the metformin a bit. Now, by this time, our lives were getting really stressful with some job changes that were looming for my husband. It was for the best, but gluten had come back into my life. I'd lost maybe 21 pounds, but a few came back on. I wasn't strict about the diet anymore, so I was bloated, tired etc.
We ended up back in Alabama in August of last year. I ignored how lousy I felt for a while and was still letting some gluten into my diet. My weight loss had stopped and was starting to come back on. In early November, the doctor upped my metformin dosage, but I knew the main issue was gluten.
This Must Be What Normal People Feel Like
I'd finally had enough of feeling terrible, and giving up wheat in the form of cookies, birthday cake, and more seemed like a little exchange for health.
I looked myself in the mirror this time and developed my mantra on December 10, 2011. "Gluten is poison... for me." And that has worked. I'm getting more done. I don't need daily naps unless I've been really busy or up late. The brain fog has lifted. Writing is easier; working is better. The laundry pile is nothing like it once was. And my weight loss started again as soon as I quit gluten for good.
I am still healing, and I think it will take at least six months to feel 100% (from what others who have been here say), but most days I wake up and think "this is what normal people feel like, and I feel good." Oh, and I don't fight binging or compulsive overeating, or crave food all day. That gnawing feeling in my stomach? It only comes back when I've accidentally gotten some gluten in my system. Otherwise, I feel full, and the whole eating thing is much easier. I never dreamed I could be normal with food, but apparently, I can. Last week when I went to the doctor, she said, "wow. You lost five pounds since I saw you last... and probably more and over the holidays!"
It wasn't tough since I didn't eat wheat in large amounts like I figure many folks do during holidays, especially Christmas.
Yes, gluten is everywhere, and yes, there are moments that it is not easy. When people ask, "can't you just have a little?" it drives me crazy.
I should find out in the next day or so about the celiac panel-- maybe. The gold standard is endoscopy or Enterolab to at least show that you have the genes for this stuff. But even the endoscopy is sometimes negative in an obviously positive person (one who is losing massive weight and has diarrhea and such all the time in the presence of gluten). In some ways, having a definite yes for celiac disease would be a relief. Then I could say to that person who says, "Can't you just eat a little?" that, no, even a little bit damages my intestines, every time. With gluten intolerance, it's a slower death, but I know it's still a premature one. It is death in the midst of life. So, I've realized it doesn't matter what other people think about it. They haven't lived my life. I have, and it's better on this side.
That's my story. I'll add to it as time goes on and I remember details I've left out. It is nice to feel good again, maybe better than I ever have in my life. Oh, and my recent bloodwork? My cholesterol was down 60 points with the HDL in the healthy range. The other numbers were much better, too. No elevated liver enzymes now and no tenderness in that spot (I forgot to mention that before). Gluten really does mess up everything and getting it out of the diet starts reversing the damage.
Another benefit there was having a housekeeper whom my family loved who came in bi-monthly. For me, that was a huge deal. Remember, I was tired and fatigued all the time, so most things were not done well when it came to having a clean house. I am sure I've been looked upon as lazy, etc., but I remember staring at a pile of whatever and seeing no way to get it done. I think it was part of the brain fog and the malnutrition that I later found out about.
So, things were a bit better on that front, but the physical stuff went on. I was now up to an even higher weight than before. I remember once we moved, I got a new scale, and I cried at what I saw on it, though I had suspected as much after weighing in at least twice a week for the last few years and monitoring the rise. I could have never envisioned being at that weight. It was like a nightmare, and I didn't know how to wake up from it.
I was still napping most days and struggling to get up in the morning. My right eye jumped most days for not reason I could ascertain, and both eyes were terribly dry. I suffered from migraines about once a week. I'd also noticed that my collarbone was sore, and the bones in my legs ached (ouch! No way to find that out like going to get a pedicure with a friend!). Also, I was short of breath and dizzy. Sometimes, I slurred words or had trouble finding the right one. I wondered if people noticed. I was afraid I was dying. Then, one day in April, I had strange pains around my stomach and back that I couldn't identify, and I felt terrible. I went to the doctor immediately, and I hated going to the doctor back then. Remember, I was fat, and the only answers I'd gotten were eat less, exercise more and don't worry so much even though you feel terrible. You're fat. Of course you feel awful!
"A kidney stone... maybe and your b.p. is elevated, so let's get you on something for that." The doctor gave me pain pills and a new b.p. prescription and sent me on my way with a scheduled ultrasound.
Kidney stones made sense to me. After all, my dad had had a few. But after a day or so, nothing happened. I didn't have the awful pain the doctor had predicted. I took my meds, tried to eat well, and found a new doctor after the ultrasound showed no kidney stone.
In July of 2010, the answers started coming to me. I'd been reading up on the various mysterious ailments I had and thought maybe just maybe I'm gluten intolerant or have celiac. By this point, my sister had been diagnosed with M.S... in her early 30s. I wondered what had caused two autoimmune disorders at such a young age or at least what was linked with such a phenomenon. I started reading more.
Gluten? Could it be a problem for me and maybe for others on both sides of my family? I thought about the insatiable sweet tooth some of us have and how fat some of my relatives are on one side. It is well known that that is just the Gay genes. (Gay is my maiden name). Then I read that massive, unexplained weight gain can be caused by GI or CD (abbreviations).
I went to the doctor and demanded a food allergy test.. IgE. It wasn't the best choice, looking back because it doesn't really determine gluten intolerance or CD, but at least it showed that I had some intolerance to wheat and rye. Hmm. Interesting. The doctor did a big panel of blood work and found that my vitamin B level was insanely low as was my vitamin D-- two other red flags for gluten issues... malabsorption. Also, one of the markers for developing anemia was high as was my ANA number (that indicates autoimmune stuff). My liver count was elevated. My glucose was borderline, and cholesterol was too. The list never seemed to end. But the two numbers on the celiac panel (he didn't do the complete one) were fine. No antibodies. I'll get back to how that doesn't mean much one way or the other later...
The doctor said try cutting out gluten. Eat well and exercise. I did. I came back to him a few months later. My B and D took a while to get up and I was megadosing on D with 50000 units a week for several months. The blood sugar got better. My pains subsided, and the liver enzyme numbers were down. Everything looked better. Oh, and I'd also lost fifteen pounds or more by December with really only changing the gluten issue. I didn't exercise for hours a day or cut calories any more than I'd already been trying to do.
Hmm. Interesting. I rocked on like that for a while with my numbers getting better mostly and my energy and thinking much clearer. My bones were no longer sore now that the vitamin B and D were in normal range, and exercise was easier, too. The only problem was, I still let gluten into my diet once in a while. Slow learner? Yes, that's me. :) Oh, and as you probably know, gluten is everywhere! And when you tell people you don't eat it, they look at you like you've grown three heads. Not the easiest thing to jump into fully, especially without a celiac diagnosis and a doctor saying, "if you eat this, you will die of stomach cancer and/or do other terrible damage to yourself. The only cure is not eating gluten."
Then in February of 2011, I started bleeding and wouldn't stop... I know it's not something guys want to read about, but I'm talking menstrual bleeding. After a few days or being afraid to leave my house for fear of flooding in public, I went to the doctor. He put me on low dose metformin after finding out my hormones were all whacked. He said, "you probably have PCOS... irregular periods, secondary infertility, and now this." I went along with the low dosage for a while.
Then I decided to see an endocrinologist. He upped the metformin a bit. Now, by this time, our lives were getting really stressful with some job changes that were looming for my husband. It was for the best, but gluten had come back into my life. I'd lost maybe 21 pounds, but a few came back on. I wasn't strict about the diet anymore, so I was bloated, tired etc.
We ended up back in Alabama in August of last year. I ignored how lousy I felt for a while and was still letting some gluten into my diet. My weight loss had stopped and was starting to come back on. In early November, the doctor upped my metformin dosage, but I knew the main issue was gluten.
This Must Be What Normal People Feel Like
I'd finally had enough of feeling terrible, and giving up wheat in the form of cookies, birthday cake, and more seemed like a little exchange for health.
I looked myself in the mirror this time and developed my mantra on December 10, 2011. "Gluten is poison... for me." And that has worked. I'm getting more done. I don't need daily naps unless I've been really busy or up late. The brain fog has lifted. Writing is easier; working is better. The laundry pile is nothing like it once was. And my weight loss started again as soon as I quit gluten for good.
I am still healing, and I think it will take at least six months to feel 100% (from what others who have been here say), but most days I wake up and think "this is what normal people feel like, and I feel good." Oh, and I don't fight binging or compulsive overeating, or crave food all day. That gnawing feeling in my stomach? It only comes back when I've accidentally gotten some gluten in my system. Otherwise, I feel full, and the whole eating thing is much easier. I never dreamed I could be normal with food, but apparently, I can. Last week when I went to the doctor, she said, "wow. You lost five pounds since I saw you last... and probably more and over the holidays!"
It wasn't tough since I didn't eat wheat in large amounts like I figure many folks do during holidays, especially Christmas.
Yes, gluten is everywhere, and yes, there are moments that it is not easy. When people ask, "can't you just have a little?" it drives me crazy.
I should find out in the next day or so about the celiac panel-- maybe. The gold standard is endoscopy or Enterolab to at least show that you have the genes for this stuff. But even the endoscopy is sometimes negative in an obviously positive person (one who is losing massive weight and has diarrhea and such all the time in the presence of gluten). In some ways, having a definite yes for celiac disease would be a relief. Then I could say to that person who says, "Can't you just eat a little?" that, no, even a little bit damages my intestines, every time. With gluten intolerance, it's a slower death, but I know it's still a premature one. It is death in the midst of life. So, I've realized it doesn't matter what other people think about it. They haven't lived my life. I have, and it's better on this side.
That's my story. I'll add to it as time goes on and I remember details I've left out. It is nice to feel good again, maybe better than I ever have in my life. Oh, and my recent bloodwork? My cholesterol was down 60 points with the HDL in the healthy range. The other numbers were much better, too. No elevated liver enzymes now and no tenderness in that spot (I forgot to mention that before). Gluten really does mess up everything and getting it out of the diet starts reversing the damage.
Wednesday, January 18, 2012
My Story, Part VIII: Doctor, Can You Help Me?
During our second year in Vancouver, I went to the doctor for a checkup. My weight had gone up another fifteen pounds or so. If you're adding, that made me pretty hefty at that point on a 5'6" frame. I'm leaving the hard number out of it, but at some point, I'll post all of that for those who are still around to read it later (in a weight chart on here I guess). The doctor did blood work... the regular short panel of vitamins, cholesterol, blood sugar and so on and pronounced nothing amiss. And maybe it just hadn't fully hit at that point, but I felt fifty. My knees hurt, joints ached and cracked, and I didn't want to do much of anything.
Despite what the doctor had said, I knew something wasn't right. I just didn't know what. I was still trying to be sugar free and still believed I was a sugar addict and that if I could just get a handle on the sugar I ate, all would be well. I finally gave that idea up since I could never seem to let go of sugar and make it through all seven steps of the program. It also never seemed to matter if I ate in a calorie range that should have promoted weight loss. It didn't for me. When I saw pictures of myself, I was always horrified at the bloated, puffy, pale, unhealthy looking woman in them.
Then a new symptom sprang up. I didn't know what it was at first. My husband rode the bus or his bike to work, or sometimes we picked him up. One early evening, I got ready to get my daughter out in the car, and sheer panic gripped me. The thought of driving there made my breath catch, and I got dizzy for a moment. I willed myself through it thinking, what is happening to me?
I had never had a panic attack or anything remotely like one, not until that day. And it happened a few other times. Again, I trace this back to gluten, nutritional imbalances, crazy blood sugar and so on. My body was working overtime to keep itself well, but it was losing the battle.
In 2007, the position my husband had taken ended as we knew it would and we headed back to the States. By that point, I was at an all time high weight for me. Let's put it this way. I had literally almost doubled my weight from high school. I couldn't believe it. I wondered over and over again: how does someone gain fifty pounds in a couple years and double that in five years? And this while exercising much of the time and even counting calories/dieting and non-dieting the whole time in a desperate attempt to keep it from happening.
I didn't know, but I plodded on... and to Mississippi we went.
From 2007 to 2009, I spent a lot of time talking to friends about these issues online, and one dear friend, Sue, told me about having celiac disease. She was the first person to ask me in 2009, "Do you think you might be gluten intolerant?"
I waved the idea away. It was too fantastical. After all, Sue was a very small woman and had been underweight when diagnosed finally in her 50s. I was fat! One commonality we did share, though, was disordered eating. She had been bulimic. I binged... not as much as I had, but I still did from time to time, and compulsive overeating was a weekly struggle for me. These problems had plagued me since childhood, but I didn't see how they had anything to do with gluten.
Maybe You... But Not Me
It made me wonder, but I didn't buy it. After all, most doctors don't believe celiac disease is that common (1 in 133, more prevalent than autism) or that gluten intolerance is either (probably 1 in 8). Why would I have thought I could have something like that?
So, it all rocked on with me still feeling terrible but managing to lose a little weight and going up and down on the scale. I was taking fish oil and the vitamins I thought were important, but still I saw no major improvements in my situation. I kept asking myself if I'd ever see a stable weight and a good life again.
Another symptom that had cropped up was secondary infertility. My husband and I had not tried for another child in the previous years when we had been moving, but we figured that though this job was another postdoctoral position, we were back in the States, and it would be a good time to try. Nothing happened, and this after my getting pregnant right away the first time around.
Two years passed, and 2010 brought with it more changes... and a light in the darkness through which I'd been staggering for years.
Despite what the doctor had said, I knew something wasn't right. I just didn't know what. I was still trying to be sugar free and still believed I was a sugar addict and that if I could just get a handle on the sugar I ate, all would be well. I finally gave that idea up since I could never seem to let go of sugar and make it through all seven steps of the program. It also never seemed to matter if I ate in a calorie range that should have promoted weight loss. It didn't for me. When I saw pictures of myself, I was always horrified at the bloated, puffy, pale, unhealthy looking woman in them.
Then a new symptom sprang up. I didn't know what it was at first. My husband rode the bus or his bike to work, or sometimes we picked him up. One early evening, I got ready to get my daughter out in the car, and sheer panic gripped me. The thought of driving there made my breath catch, and I got dizzy for a moment. I willed myself through it thinking, what is happening to me?
I had never had a panic attack or anything remotely like one, not until that day. And it happened a few other times. Again, I trace this back to gluten, nutritional imbalances, crazy blood sugar and so on. My body was working overtime to keep itself well, but it was losing the battle.
In 2007, the position my husband had taken ended as we knew it would and we headed back to the States. By that point, I was at an all time high weight for me. Let's put it this way. I had literally almost doubled my weight from high school. I couldn't believe it. I wondered over and over again: how does someone gain fifty pounds in a couple years and double that in five years? And this while exercising much of the time and even counting calories/dieting and non-dieting the whole time in a desperate attempt to keep it from happening.
I didn't know, but I plodded on... and to Mississippi we went.
From 2007 to 2009, I spent a lot of time talking to friends about these issues online, and one dear friend, Sue, told me about having celiac disease. She was the first person to ask me in 2009, "Do you think you might be gluten intolerant?"
I waved the idea away. It was too fantastical. After all, Sue was a very small woman and had been underweight when diagnosed finally in her 50s. I was fat! One commonality we did share, though, was disordered eating. She had been bulimic. I binged... not as much as I had, but I still did from time to time, and compulsive overeating was a weekly struggle for me. These problems had plagued me since childhood, but I didn't see how they had anything to do with gluten.
Maybe You... But Not Me
It made me wonder, but I didn't buy it. After all, most doctors don't believe celiac disease is that common (1 in 133, more prevalent than autism) or that gluten intolerance is either (probably 1 in 8). Why would I have thought I could have something like that?
So, it all rocked on with me still feeling terrible but managing to lose a little weight and going up and down on the scale. I was taking fish oil and the vitamins I thought were important, but still I saw no major improvements in my situation. I kept asking myself if I'd ever see a stable weight and a good life again.
Another symptom that had cropped up was secondary infertility. My husband and I had not tried for another child in the previous years when we had been moving, but we figured that though this job was another postdoctoral position, we were back in the States, and it would be a good time to try. Nothing happened, and this after my getting pregnant right away the first time around.
Two years passed, and 2010 brought with it more changes... and a light in the darkness through which I'd been staggering for years.
My Story, Part VII: The Spectre of Autism
Vancouver is a progressive city with tons of cool people, but it's also cold and rainy for more than three months out of the year. Once September arrives, forget it. Add to that, my husband was doing a demanding postdoctoral research position, and I had a toddler in a basement apartment.
Yeah, that was a bit challenging. We had a good church support network we'd found early on there, and that was a blessing. But still, the tiredness, fatigue, bloating, and unhappiness went on. Its friend irritability also showed up. I found my temper short and my words harsh.
I didn't like who I'd become, and I remember a particular sermon in church about the fruit of the Spirit. I realized I didn't have several of them, and I cried over that. But I wasn't sure what to do about it. I couldn't seem to get out of the funk I was in, though I had a beautiful daughter and a husband who had made a courageous career change that seemed like a good idea along with friends who cared.
I was down in a black hole of depression that I now blame 90% on gluten.
I did my best for my daughter, and all was well with her for the first year. She walked a bit early and talked using three syllable words.
Then she turned three.
I'll never forget it. We went down to the beach to see my parents. By that point, I was managing to hold my weight a bit above where it had been in Pennsylvania, but I craved bread and wheat all the time and still fought the old compulsions.
My daughter fought getting her bathing suit on that week.. with screaming fits and thrashing... though she wanted to swim. After three days of it, my nerves were totally shot and I remember going out to the beach with my husband where I cried salty tears in the salty waves. "What is wrong with her?" I asked him. He just shook his head.
When we got back home, she wouldn't let me cut her fingernails but would arch and scream. I was beside myself and started researching. I figured it out within days:
Autism
And I knew I was right. I've long had a smidgen of intuition when it comes to people and these sorts of things, and I knew it in my gut. At first my husband didn't believe it, but he was soon to be swayed as the fits went on over certain clothes and just everyday things. My daughter couldn't answer a simple question at three and a few months old: What's your name?
We got her into the wonderful Canadian healthcare system for this-- and yes, I stand by that claim about it. We were covered under my husband's insurance anyway, and a pediatrician took my concerns seriously and referred us on. A whole panel diagnosed my daughter as high functioning autistic. The doctor tried to reassure me as I wept. "She's autistic, but she'll mainly be quirky...if you get her the therapy she needs."
She got play based therapy and came a long way. Today, she is a bright, quirky girl. I can't imagine my world without her.
But I have cried many tears since then-- especially in the last year. I wonder what might have been if I had known about my gluten intolerance before I got pregnant and had been gluten free? You see, autism, like many autoimmune disorders, has a strong association with celiac disease (which I may or may not have) and gluten intolerance.
This is a tough pill to swallow, and it is part of why I am so passionate about getting my story out there. I hope it serves to get someone else on the gluten free diet as soon as possible. Because it's not just about you... especially not if you're a woman planning to have children. The damage gluten can do to your body and that of the life you carry can't be overemphasized.
Was that the only factor involved in my sweet daughter's autism? I don't think so, but I feel certain it is one of the major ones.
Yeah, that was a bit challenging. We had a good church support network we'd found early on there, and that was a blessing. But still, the tiredness, fatigue, bloating, and unhappiness went on. Its friend irritability also showed up. I found my temper short and my words harsh.
I didn't like who I'd become, and I remember a particular sermon in church about the fruit of the Spirit. I realized I didn't have several of them, and I cried over that. But I wasn't sure what to do about it. I couldn't seem to get out of the funk I was in, though I had a beautiful daughter and a husband who had made a courageous career change that seemed like a good idea along with friends who cared.
I was down in a black hole of depression that I now blame 90% on gluten.
I did my best for my daughter, and all was well with her for the first year. She walked a bit early and talked using three syllable words.
Then she turned three.
I'll never forget it. We went down to the beach to see my parents. By that point, I was managing to hold my weight a bit above where it had been in Pennsylvania, but I craved bread and wheat all the time and still fought the old compulsions.
My daughter fought getting her bathing suit on that week.. with screaming fits and thrashing... though she wanted to swim. After three days of it, my nerves were totally shot and I remember going out to the beach with my husband where I cried salty tears in the salty waves. "What is wrong with her?" I asked him. He just shook his head.
When we got back home, she wouldn't let me cut her fingernails but would arch and scream. I was beside myself and started researching. I figured it out within days:
Autism
And I knew I was right. I've long had a smidgen of intuition when it comes to people and these sorts of things, and I knew it in my gut. At first my husband didn't believe it, but he was soon to be swayed as the fits went on over certain clothes and just everyday things. My daughter couldn't answer a simple question at three and a few months old: What's your name?
We got her into the wonderful Canadian healthcare system for this-- and yes, I stand by that claim about it. We were covered under my husband's insurance anyway, and a pediatrician took my concerns seriously and referred us on. A whole panel diagnosed my daughter as high functioning autistic. The doctor tried to reassure me as I wept. "She's autistic, but she'll mainly be quirky...if you get her the therapy she needs."
She got play based therapy and came a long way. Today, she is a bright, quirky girl. I can't imagine my world without her.
But I have cried many tears since then-- especially in the last year. I wonder what might have been if I had known about my gluten intolerance before I got pregnant and had been gluten free? You see, autism, like many autoimmune disorders, has a strong association with celiac disease (which I may or may not have) and gluten intolerance.
This is a tough pill to swallow, and it is part of why I am so passionate about getting my story out there. I hope it serves to get someone else on the gluten free diet as soon as possible. Because it's not just about you... especially not if you're a woman planning to have children. The damage gluten can do to your body and that of the life you carry can't be overemphasized.
Was that the only factor involved in my sweet daughter's autism? I don't think so, but I feel certain it is one of the major ones.
My Story, Part VI: A New Climate and Oh, Baby...
We moved to a small college town near Pittsburgh, PA where my husband is from. He took a professor position, and I taught adjunct and worked at my tutoring job that went everywhere with me (it's an online job). The job wasn't great, and we were making plans soon to leave along with the other new faculty that had come in and balked at how crazy things were there.
I wasn't sure what was wrong with me, but the gray sky climate there seemed to zonk me, or so I thought, as a life long Alabama girl used to lots of sunlight and blue skies. I had even less energy than before, and I hibernated in the snowy, cold fall and winter that first year. Oh, and I got pregnant that October. Actually four months into it, I started feeling great, and I enjoyed my pregnancy. We took long walks up and down hills until I couldn't do it anymore in late pregnancy.
One thing I noticed, though, was that I had terrible edema with the pregnancy early on... like even before I was showing. My ankles were huge and puffy all the time. I didn't get it, and my blood pressure was fine as was my blood sugar, so the doctor said not to worry about it. I had cut out coffee but not gluten of course. I just didn't know.
My daughter was born in July of 2003, and I was happy but tired. I lost 30 pounds almost overnight (I had gained 45 with the pregnancy... way too much, and that was with exercise and trying to eat sensibly the whole time), but that still put me at a high weight. I had been packing on the pounds since my move. It was as if my gluten sensitivity and the changes had pushed everything into a new mode-- one in which things got bad for me quickly. So, when it was all said and done, I got back under a magic weight number for me... not svelte, but one that had people saying I looked good. Mesomorphs can carry a good bit of weight, after all, with the extra musculature. But I'll never forget one person asking me "when is your stomach going to go back like it was?"
Yeah, that's a question you don't erase from memory, though I'm sure that person has. Now I think it was the combo of gluten tummy and skin that didn't just bounce back after having a baby. We're all different after all.
A strange thing happened, though as I ate the usual fare at home and on campus and fought my food cravings and time marched on... plenty of healthy whole wheat (ugh! Now I want to scream!!), Subway sandwiches in the lunch hall, whole white pita wraps with tons of veggies and turkey. But still, I gained weight... another 25 pounds. Just getting up in the morning to teach was a struggle. I often picked my daughter up from childcare in those early years and took her home. I'd nap right alongside her, exhausted though I wasn't sure why.
I thought I was just depressed due to the climate and the crappy place we lived full of narrow minded people and not many I wanted to get close to.
And my weight. I couldn't understand it. I tried Weight Watchers, and it only made the binging I could try to control get worse. I figure that was because I was eating even more wheat than usual.
After that, I tried non-dieting. You know, eat when you're hungry, stop when you're full and float down to your body's desired weight. Airy fairy magic pie in the sky! So easy even an idiot could do it.
Um, yeah, right. As a person with gluten issues who was literally starving from not absorbing nutrients and whose hunger signals screamed for hours on end each day, you can figure out how wonderfully that went. I would go up and down on the scale and never understood how people knew they were satisfied when hunger just gnawed away at me.
After that, I found a program called Potatoes Not Prozac/Radiant Recovery. Then I thought, Oh, this is it! I'm sugar sensitive or addicted to sugar!
My husband rolled his eyes but supported me while saying, "another diet? Why can't you just eat and stop when you're full?"
I said, "I don't know. I'm not like you. I just can't."
It made a lot of sense. After all, sugar was like a drug for me, wasn't it? I couldn't stop after one brownie or cookie or... could I? So, I struggled with this program for several years on and off all told. I deeply respect Ms. DesMaisons, but I've come to believe that many of the people who land at her program have gluten intolerance, celiac, and food allergies and THAT is why they can't seem to stop eating! It's not really the sugar.
When I'd try to eat on program, I would get sick feeling and hungry after a big breakfast shake of oats, milk, and protein powder. Duh. Oats can really bother folks who have gluten issues, and I think I'm a bit sensitive to milk. So, yeah, Not a good thing. I remember noticing that when I took almost all the oats out, I felt better. Magic!
I still felt sick, tired, and awful. I'd suffered from terrible postpartum depression, and I wasn't sure why. Now, I think it was related to depleted vitamins and minerals in my malnourished body.
By 2005, my husband had found another job, and we were off to a new adventure, one that I looked forward to.
We headed to Canada, and the story of gluten and its effects on my life would unfold even more fully there...
I wasn't sure what was wrong with me, but the gray sky climate there seemed to zonk me, or so I thought, as a life long Alabama girl used to lots of sunlight and blue skies. I had even less energy than before, and I hibernated in the snowy, cold fall and winter that first year. Oh, and I got pregnant that October. Actually four months into it, I started feeling great, and I enjoyed my pregnancy. We took long walks up and down hills until I couldn't do it anymore in late pregnancy.
One thing I noticed, though, was that I had terrible edema with the pregnancy early on... like even before I was showing. My ankles were huge and puffy all the time. I didn't get it, and my blood pressure was fine as was my blood sugar, so the doctor said not to worry about it. I had cut out coffee but not gluten of course. I just didn't know.
My daughter was born in July of 2003, and I was happy but tired. I lost 30 pounds almost overnight (I had gained 45 with the pregnancy... way too much, and that was with exercise and trying to eat sensibly the whole time), but that still put me at a high weight. I had been packing on the pounds since my move. It was as if my gluten sensitivity and the changes had pushed everything into a new mode-- one in which things got bad for me quickly. So, when it was all said and done, I got back under a magic weight number for me... not svelte, but one that had people saying I looked good. Mesomorphs can carry a good bit of weight, after all, with the extra musculature. But I'll never forget one person asking me "when is your stomach going to go back like it was?"
Yeah, that's a question you don't erase from memory, though I'm sure that person has. Now I think it was the combo of gluten tummy and skin that didn't just bounce back after having a baby. We're all different after all.
A strange thing happened, though as I ate the usual fare at home and on campus and fought my food cravings and time marched on... plenty of healthy whole wheat (ugh! Now I want to scream!!), Subway sandwiches in the lunch hall, whole white pita wraps with tons of veggies and turkey. But still, I gained weight... another 25 pounds. Just getting up in the morning to teach was a struggle. I often picked my daughter up from childcare in those early years and took her home. I'd nap right alongside her, exhausted though I wasn't sure why.
I thought I was just depressed due to the climate and the crappy place we lived full of narrow minded people and not many I wanted to get close to.
And my weight. I couldn't understand it. I tried Weight Watchers, and it only made the binging I could try to control get worse. I figure that was because I was eating even more wheat than usual.
After that, I tried non-dieting. You know, eat when you're hungry, stop when you're full and float down to your body's desired weight. Airy fairy magic pie in the sky! So easy even an idiot could do it.
Um, yeah, right. As a person with gluten issues who was literally starving from not absorbing nutrients and whose hunger signals screamed for hours on end each day, you can figure out how wonderfully that went. I would go up and down on the scale and never understood how people knew they were satisfied when hunger just gnawed away at me.
After that, I found a program called Potatoes Not Prozac/Radiant Recovery. Then I thought, Oh, this is it! I'm sugar sensitive or addicted to sugar!
My husband rolled his eyes but supported me while saying, "another diet? Why can't you just eat and stop when you're full?"
I said, "I don't know. I'm not like you. I just can't."
It made a lot of sense. After all, sugar was like a drug for me, wasn't it? I couldn't stop after one brownie or cookie or... could I? So, I struggled with this program for several years on and off all told. I deeply respect Ms. DesMaisons, but I've come to believe that many of the people who land at her program have gluten intolerance, celiac, and food allergies and THAT is why they can't seem to stop eating! It's not really the sugar.
When I'd try to eat on program, I would get sick feeling and hungry after a big breakfast shake of oats, milk, and protein powder. Duh. Oats can really bother folks who have gluten issues, and I think I'm a bit sensitive to milk. So, yeah, Not a good thing. I remember noticing that when I took almost all the oats out, I felt better. Magic!
I still felt sick, tired, and awful. I'd suffered from terrible postpartum depression, and I wasn't sure why. Now, I think it was related to depleted vitamins and minerals in my malnourished body.
By 2005, my husband had found another job, and we were off to a new adventure, one that I looked forward to.
We headed to Canada, and the story of gluten and its effects on my life would unfold even more fully there...
My Story, Part V: Graduate School and the Calm Before the Storm
I thought of one other thing about my college days. A guy I dated for a while during that period observed that if I didn't get my food on time, I got grumpy. As in, I needed to eat early in the evening or on time. The same went for lunch.
He was right. I always just thought I had big blood sugar issues. Little did I know, I truly was hungry most of the time and not getting enough nutrients. In my family of origin, dinner often came after 7pm most evenings. I remember being starving by that time, especially after a healthy whole wheat based snack after school! :)
After college, I went on to graduate school and marriage. I managed to keep my weight stable for quite some time. But the belly was still there as always. I worked out several days at week at the university complex, but my energy was low, and I never felt great.
I still had terrible brain fog, and writing my thesis was hell. I couldn't seem to put everything together. Fortunately, I kept my grades up, but I've often wondered how I did it when it seems I was using a third of my brainpower!
But honestly, I didn't realize that I felt that bad. I just thought everyone felt like I did. Sometimes just walking across campus winded me, and I was at a normal weight at that time.
During my first or second year of graduate school, my sister was diagnosed with Hashimoto's Thyroiditis, a condition of hypothyroidism-- at a young age. All the first degree relatives, including me, were tested and found negative for it. But it is an autoimmune disorder, and gluten and those disorders go hand in hand. I didn't know that at the time... in fact, I had never heard in 1999 or 2000 that gluten could be a bad thing.
By the end of graduate school, I had gained more weight, though I was still exercising. Then, we graduated, and moved... and my decline went into hyper speed.
He was right. I always just thought I had big blood sugar issues. Little did I know, I truly was hungry most of the time and not getting enough nutrients. In my family of origin, dinner often came after 7pm most evenings. I remember being starving by that time, especially after a healthy whole wheat based snack after school! :)
After college, I went on to graduate school and marriage. I managed to keep my weight stable for quite some time. But the belly was still there as always. I worked out several days at week at the university complex, but my energy was low, and I never felt great.
I still had terrible brain fog, and writing my thesis was hell. I couldn't seem to put everything together. Fortunately, I kept my grades up, but I've often wondered how I did it when it seems I was using a third of my brainpower!
But honestly, I didn't realize that I felt that bad. I just thought everyone felt like I did. Sometimes just walking across campus winded me, and I was at a normal weight at that time.
During my first or second year of graduate school, my sister was diagnosed with Hashimoto's Thyroiditis, a condition of hypothyroidism-- at a young age. All the first degree relatives, including me, were tested and found negative for it. But it is an autoimmune disorder, and gluten and those disorders go hand in hand. I didn't know that at the time... in fact, I had never heard in 1999 or 2000 that gluten could be a bad thing.
By the end of graduate school, I had gained more weight, though I was still exercising. Then, we graduated, and moved... and my decline went into hyper speed.
Tuesday, January 17, 2012
My Story: Part IV... The Teen and College Years
From a young age, I was known as "aloof and standoffish." In fact, my nickname is the Ice Queen. Again, some of this is personality type, but I've also read that it can be part of how gluten intolerance/celiac presents.
As I moved into my teen years, I noticed that I was quite emotional, and mood swings plagued me. I'm not sure that I was totally unusual in that, but I did lock myself away many an afternoon and listen to The Cure... book in hand of course. My energy remained fairly low, though I stayed active with exercise and dance.
I remember taking senior pictures when I was 18. I'll never forget getting dressed for one of them and hating the way my belly pooched out in a silky, green, fitted shirt I had. At 5'6" 130 lbs. or so, I was certainly not fat, but I carried weight in my stomach as I had for years. That was just me, or so I thought.
The College Years
When I went away to college, things got worse. I packed on about forty pounds by the end of my freshman year. Take that, freshman 15! :) I'm not sure quite how much it was, but my clothes didn't fit at all. The binging behaviors and compulsive overeating I had engaged in also became more marked. A big change for an introvert led to stress. That first semester was tough for me, and still the always hungry feeling remained. I realize now, too, that I was eating in the dining hall and wheat was a bigger part of the fare there than it was at home. So, I put this weight gain down to 20% emotional and 80% compulsion that had always been with me. And of course, I was no longer exercising for hours each day. Just walking across campus and taking dance classes was it, but still, the weight gain was huge. I remember feeling so tired just walking from one place to the next.
My mother, to tell the truth, had always cracked the whip on me when I lived at home, so even though I was tired, sluggish, and the rest, I kept going-- making all As, being the golden girl, getting voted most talented my senior year, having a steady boyfriend and then dating around. But once I got to college, the momentum let up. Oh, the grades were still good, but as my nutrition worsened (and I was not eating badly, mind you... just more wheat in the main dishes we had, big bowls of bran flakes with milk for breakfast! The horror!), things got tougher.
I remember spending half days in bed. I put it down to "depression." Now I see that it was gluten fog that brought low energy and depression along with it. It's a bad cycle. Feel bad... eat wheat, bran, or oatmeal based food... feel bad. Rinse, repeat.
Now That I'm Thin, All My Dreams Will Come True!
The summer before my sophomore year of college, I went home. During that time, my family was doing a diet at church called First Place. I have mixed feelings about it to this day. Did I lose weight? Oh yes, I did. Here's how. We did a basic calculation of your weight X 10 for weight loss, focusing on "healthy foods." Bagels? Heck yes! Low fat? Check.
I was a smashing success with all my self control, and I lost from probably 165 lbs all the way down to 124 lbs. Now, I was a mesomorph with a muscular frame to this point, keep in mind. I have been told that I look great at 155 lbs. and 5'6" (when I'm working out regularly) because of that muscle.
To accomplish this feat of massive loss, I went all the way down to 1200 to 1400 calories per day as a 19 year old super active woman. I spent hours at the gym most days and took walks besides. Oh, yes. I lost weight, so much so that I remember my best friend's mom going "Wow! I can't believe how thin you are," with a worried frown. And no wonder, I was starving myself. I realize now that I should have been eating no less than 1800 calories for my age and activity level, not to mention my weight. The diet put no prohibition on going lower than that.
My hair also fell out at this weight, and my muscles disappeared. I still didn't think I looked all that great, and I was fighting anorexic tendencies and compulsive calorie counting. And of course, my good buddy wheat was there! I ate bagels, cheez-its, and of course sugary wheat based foods.
Needless to say, when I got back to college, I put some of the weight back on and landed at maybe 140 by the end of sophomore year. I bounced from there to 158 over the rest of my college years. That was with working out at the gym and watching what I ate as well as dancing. And I still felt lousy and sometimes missed classes from oversleeping.
But here's the crazy thing. I double majored in college, and I won an award in psychology my senior year. I sometimes look back on my life and think: how the heck did I manage? I felt so terrible for most of it... and remember sitting in my room thinking nothing for long periods of time-- in a gluten fog of sapped energy.
As I moved into my teen years, I noticed that I was quite emotional, and mood swings plagued me. I'm not sure that I was totally unusual in that, but I did lock myself away many an afternoon and listen to The Cure... book in hand of course. My energy remained fairly low, though I stayed active with exercise and dance.
I remember taking senior pictures when I was 18. I'll never forget getting dressed for one of them and hating the way my belly pooched out in a silky, green, fitted shirt I had. At 5'6" 130 lbs. or so, I was certainly not fat, but I carried weight in my stomach as I had for years. That was just me, or so I thought.
The College Years
When I went away to college, things got worse. I packed on about forty pounds by the end of my freshman year. Take that, freshman 15! :) I'm not sure quite how much it was, but my clothes didn't fit at all. The binging behaviors and compulsive overeating I had engaged in also became more marked. A big change for an introvert led to stress. That first semester was tough for me, and still the always hungry feeling remained. I realize now, too, that I was eating in the dining hall and wheat was a bigger part of the fare there than it was at home. So, I put this weight gain down to 20% emotional and 80% compulsion that had always been with me. And of course, I was no longer exercising for hours each day. Just walking across campus and taking dance classes was it, but still, the weight gain was huge. I remember feeling so tired just walking from one place to the next.
My mother, to tell the truth, had always cracked the whip on me when I lived at home, so even though I was tired, sluggish, and the rest, I kept going-- making all As, being the golden girl, getting voted most talented my senior year, having a steady boyfriend and then dating around. But once I got to college, the momentum let up. Oh, the grades were still good, but as my nutrition worsened (and I was not eating badly, mind you... just more wheat in the main dishes we had, big bowls of bran flakes with milk for breakfast! The horror!), things got tougher.
I remember spending half days in bed. I put it down to "depression." Now I see that it was gluten fog that brought low energy and depression along with it. It's a bad cycle. Feel bad... eat wheat, bran, or oatmeal based food... feel bad. Rinse, repeat.
Now That I'm Thin, All My Dreams Will Come True!
The summer before my sophomore year of college, I went home. During that time, my family was doing a diet at church called First Place. I have mixed feelings about it to this day. Did I lose weight? Oh yes, I did. Here's how. We did a basic calculation of your weight X 10 for weight loss, focusing on "healthy foods." Bagels? Heck yes! Low fat? Check.
I was a smashing success with all my self control, and I lost from probably 165 lbs all the way down to 124 lbs. Now, I was a mesomorph with a muscular frame to this point, keep in mind. I have been told that I look great at 155 lbs. and 5'6" (when I'm working out regularly) because of that muscle.
To accomplish this feat of massive loss, I went all the way down to 1200 to 1400 calories per day as a 19 year old super active woman. I spent hours at the gym most days and took walks besides. Oh, yes. I lost weight, so much so that I remember my best friend's mom going "Wow! I can't believe how thin you are," with a worried frown. And no wonder, I was starving myself. I realize now that I should have been eating no less than 1800 calories for my age and activity level, not to mention my weight. The diet put no prohibition on going lower than that.
My hair also fell out at this weight, and my muscles disappeared. I still didn't think I looked all that great, and I was fighting anorexic tendencies and compulsive calorie counting. And of course, my good buddy wheat was there! I ate bagels, cheez-its, and of course sugary wheat based foods.
Needless to say, when I got back to college, I put some of the weight back on and landed at maybe 140 by the end of sophomore year. I bounced from there to 158 over the rest of my college years. That was with working out at the gym and watching what I ate as well as dancing. And I still felt lousy and sometimes missed classes from oversleeping.
But here's the crazy thing. I double majored in college, and I won an award in psychology my senior year. I sometimes look back on my life and think: how the heck did I manage? I felt so terrible for most of it... and remember sitting in my room thinking nothing for long periods of time-- in a gluten fog of sapped energy.
Part III: Tween Purgatory and the Early Teen Years
I'm blowing through these posts, but I have some time, and I've been thinking a lot about my past. Today and this week seem like the right time to get it all down on paper... or screen. :)
So, age nine passed with the last of my mysterious nosebleeds and the bad "growing pains" I often had in my legs at night. After reading, I have found that nosebleeds and growing pains are quite common for those with gluten issues. It was passed off as normal as so many things would be with me.
By age ten, to say I was physically developed would have been an understatement. I had the largest breasts of any of my peers, and I began my period in fifth grade. This was a bit uncomfortable, and boys being what they are in fifth grade, I got teased a bit about my new looks. After the first few menstrual cycles, I realized mine were irregular: 33-62 days even then. Just another thing to tick off on the list of "strange things" that doctors waved away as normal or variations that wouldn't hurt me.
Overall, though, for the next few years, I grew into a curvy body (except for my flat butt... another trait of gluten intolerant development I've read now).
The mild, floating depression and other issues I'd had were still with me, but I had several good friends and maintained my high grades-- all As until tenth grade. The one issue I had in academic settings was a bit of trouble in forming a fast verbal response or mashalling a good spoken response to questions from peers or in cases that needed analysis. I noticed it then, and it's continued with me. Some of this is part of introversion, but much of it is that my brain was bogged down and made it tough to think clearly and quickly.
I also found that I could sleep for hours after meals or at odd times and felt foggy in the morning and around 3 p.m. I remember having a big lunch on Sundays after church and then crawling into bed; this routine was my norm. I would sleep for at least an hour until my mom woke me up and we'd go to the Y. I always felt terrible, foggy and hungover when I got up and wondered why I needed so much sleep just after eating... and I wanted to keep sleeping. On school days, I always wanted a snack as soon as I got home; the constant hunger rarely left me, and I could eat huge portions. Seconds and thirds were the norm for me.
My stomach had a permanent pooch by this time that never seemed to go away. I didn't think much of it but was aware that not everyone looked like that.
By age thirteen, I was spending hours most days at either the YMCA or at dance classes, but I never had what I'd call a thin physique... always the muscular calves of a mesomorph and a soft tummy. I did realize that I needed to exercise a fair amount even to stay at the "a bit larger than my peers" size that I was back then. I wore anywhere from a size 9/10 to a 15 in those years.
I write part of this to bring attention to the myth of the thin gluten intolerant or celiac person. 40% of us are chubby to fat, and that is documented in the scientific literature, even though many doctors still don't know it and think all celiacs/gluten intolerant folks are underweight or thin. The truth is that the body responds differently in different people to starvation or semi-starvation (not being able to absorb gluten leads to other malabsorption issues as I found out).
One of my good friends who is celiac presented as very tall and extremely thin all through childhood and teen years... nearly gaunt until she got much older.
And of course... the binging and overeating remained with me. I ate in secret, and I ate a lot. I despaired, but whom could I tell? And how could they help me? I remember feeling sure they couldn't. I don't recall telling anyone about my eating habits in this period of my life. I just labeled myself as a freak and a deviant and often wondered how I would keep from getting fat. And of course, it was isolating and painful. I spent many nights praying about it and repenting of gluttony once I learned that word and asking God to show me a way out. Basically, I always felt I was pushing myself through life as sluggishness and some sort of mental ooze threatened to mire me under for good.
So, age nine passed with the last of my mysterious nosebleeds and the bad "growing pains" I often had in my legs at night. After reading, I have found that nosebleeds and growing pains are quite common for those with gluten issues. It was passed off as normal as so many things would be with me.
By age ten, to say I was physically developed would have been an understatement. I had the largest breasts of any of my peers, and I began my period in fifth grade. This was a bit uncomfortable, and boys being what they are in fifth grade, I got teased a bit about my new looks. After the first few menstrual cycles, I realized mine were irregular: 33-62 days even then. Just another thing to tick off on the list of "strange things" that doctors waved away as normal or variations that wouldn't hurt me.
Overall, though, for the next few years, I grew into a curvy body (except for my flat butt... another trait of gluten intolerant development I've read now).
The mild, floating depression and other issues I'd had were still with me, but I had several good friends and maintained my high grades-- all As until tenth grade. The one issue I had in academic settings was a bit of trouble in forming a fast verbal response or mashalling a good spoken response to questions from peers or in cases that needed analysis. I noticed it then, and it's continued with me. Some of this is part of introversion, but much of it is that my brain was bogged down and made it tough to think clearly and quickly.
I also found that I could sleep for hours after meals or at odd times and felt foggy in the morning and around 3 p.m. I remember having a big lunch on Sundays after church and then crawling into bed; this routine was my norm. I would sleep for at least an hour until my mom woke me up and we'd go to the Y. I always felt terrible, foggy and hungover when I got up and wondered why I needed so much sleep just after eating... and I wanted to keep sleeping. On school days, I always wanted a snack as soon as I got home; the constant hunger rarely left me, and I could eat huge portions. Seconds and thirds were the norm for me.
My stomach had a permanent pooch by this time that never seemed to go away. I didn't think much of it but was aware that not everyone looked like that.
By age thirteen, I was spending hours most days at either the YMCA or at dance classes, but I never had what I'd call a thin physique... always the muscular calves of a mesomorph and a soft tummy. I did realize that I needed to exercise a fair amount even to stay at the "a bit larger than my peers" size that I was back then. I wore anywhere from a size 9/10 to a 15 in those years.
I write part of this to bring attention to the myth of the thin gluten intolerant or celiac person. 40% of us are chubby to fat, and that is documented in the scientific literature, even though many doctors still don't know it and think all celiacs/gluten intolerant folks are underweight or thin. The truth is that the body responds differently in different people to starvation or semi-starvation (not being able to absorb gluten leads to other malabsorption issues as I found out).
One of my good friends who is celiac presented as very tall and extremely thin all through childhood and teen years... nearly gaunt until she got much older.
And of course... the binging and overeating remained with me. I ate in secret, and I ate a lot. I despaired, but whom could I tell? And how could they help me? I remember feeling sure they couldn't. I don't recall telling anyone about my eating habits in this period of my life. I just labeled myself as a freak and a deviant and often wondered how I would keep from getting fat. And of course, it was isolating and painful. I spent many nights praying about it and repenting of gluttony once I learned that word and asking God to show me a way out. Basically, I always felt I was pushing myself through life as sluggishness and some sort of mental ooze threatened to mire me under for good.
My Story, Part II: A Hungry Little Girl... One Isn't Enough
From about age six on, I knew I was different around food than many of my peers. I had been very thin up to that point, probably because I couldn't eat much due to my throat always hurting in the years before the tonsillectomy. After I got my tonsils removed, I gained weight more easily, and I ate.
One incident sticks in my mind to this day. I had gone over to my best friend's house, and her mother had made brownies. My friend had one and walked away. I had one and wanted more and ate as many as I could get away with eating. All I could think about was brownies, and I easily could have eaten half the pan then and come back for more hours later. This compulsion of mine shamed me. Other people seemed to eat and get enough and walk away... I couldn't understand that.
And it didn't end there. I'm going to really honest here. I know there are others of you out there who are like me who feel ashamed of how you eat, what you eat, when you eat. You ask yourself: what is WRONG with me? You look for answers, and some sound good. You are known as the serial dieter in your family, and people roll their eyes at your latest schemes as you only grow fatter. Sound familiar? You have read books that tell you you are an emotional eater, that you are addicted to sugar, that you are a glutton, or that you need to just put down the food. But somehow... you can't, not for very long anyway because you never feel full. Something is gnawing at you, missing inside of you, driving you to eat.
I believe for many of you, you eat emotionally no more often than the average person does (and studies of fat people have borne this out. Everyone uses food for pleasure sometimes, but that's just it. It's sometimes, and pleasure is not what is driving you to eat... it's the gnawing, never full feeling). There is a physiological, not a psychological, reason behind your weight/the ease with which you bloat up or gain weight after eating one "bad food." More about all of this in later parts of my story...
So, since I was hungry, it was either feel that unsettled sensation in my stomach and mind (yes, thoughts were always on food, too) all or most of the time or eat more in hopes that the gnawing, slight burning would go away. I tried both. I never tried to explain to anyone in those years how my stomach felt after a meal. I didn't know it wasn't normal.
Other snapshots of that time: I remember eating lunch at school and not feeling full after the typical turkey sandwich on whole wheat with fruit and a Little Debbie cake. I could always eat more, and sometimes I did, but I didn't feel satiated. Little wonder, since those lunches were mainly wheat based and part of the low fat trend of the day.
Looking back, the only times I did feel satiated mentally and physically after a meal were when my mom cooked peas, fish, and whole foods. I still believe that's why I used to eat peas like crazy when she made them (my body wanted those nutrients and the protein in them) and why I love fish and collard greens. My body knew what I needed!
Another incident that sticks out from this time is how many pancakes I could eat... seven during one competition with my grandfather. They never did fill me up, but I loved the taste. Looking back, this was a clear indicator that something was "off" with me. I craved wheat, yet it never satisfied me.
Looking at pictures of myself at age 8 or 9, I was chubby by that point with the typical gluten belly... a pooch on the upper or lower part of one's stomach (or both). You see, I was eating, but my body was likely malnourished and still said, "give me food." This continued on through the years, and I'll talk more about how this hunger manifested at various stages in my life.
I also spent most of my time reading. I realize now that it was likely because I never felt that great. Reading didn't demand much of me, and I could lie down or sit while I did it.
My other main pursuit was dance, and I liked ballet. The slow movement worked for me. I was NOT athletic at all, and I knew running or another sport like that would never work for me. My body was speaking, but I didn't know how to decipher its messages.
What Is the Meaning of Life? Depression by age 9
I remember battling with feelings of low self esteem and depression at a young age. I wondered about the meaning of life and whether living was worth it. Yes, I did, and I'm talking about that for the first time now.
I also had OCD (obsessive/compulsive) symptoms at this age, though I wouldn't have known to call them that-- repetitive, bothersome thoughts I couldn't seem to banish. I guess you could say I was a serious child, not known for my bubbly personality. :) Some of that was personality type, but much of it is that I just didn't see what there was to be really happy about. All of these emotional/psychological symptoms are also part of gluten intolerance/celiac.
One incident sticks in my mind to this day. I had gone over to my best friend's house, and her mother had made brownies. My friend had one and walked away. I had one and wanted more and ate as many as I could get away with eating. All I could think about was brownies, and I easily could have eaten half the pan then and come back for more hours later. This compulsion of mine shamed me. Other people seemed to eat and get enough and walk away... I couldn't understand that.
And it didn't end there. I'm going to really honest here. I know there are others of you out there who are like me who feel ashamed of how you eat, what you eat, when you eat. You ask yourself: what is WRONG with me? You look for answers, and some sound good. You are known as the serial dieter in your family, and people roll their eyes at your latest schemes as you only grow fatter. Sound familiar? You have read books that tell you you are an emotional eater, that you are addicted to sugar, that you are a glutton, or that you need to just put down the food. But somehow... you can't, not for very long anyway because you never feel full. Something is gnawing at you, missing inside of you, driving you to eat.
I believe for many of you, you eat emotionally no more often than the average person does (and studies of fat people have borne this out. Everyone uses food for pleasure sometimes, but that's just it. It's sometimes, and pleasure is not what is driving you to eat... it's the gnawing, never full feeling). There is a physiological, not a psychological, reason behind your weight/the ease with which you bloat up or gain weight after eating one "bad food." More about all of this in later parts of my story...
So, since I was hungry, it was either feel that unsettled sensation in my stomach and mind (yes, thoughts were always on food, too) all or most of the time or eat more in hopes that the gnawing, slight burning would go away. I tried both. I never tried to explain to anyone in those years how my stomach felt after a meal. I didn't know it wasn't normal.
Other snapshots of that time: I remember eating lunch at school and not feeling full after the typical turkey sandwich on whole wheat with fruit and a Little Debbie cake. I could always eat more, and sometimes I did, but I didn't feel satiated. Little wonder, since those lunches were mainly wheat based and part of the low fat trend of the day.
Looking back, the only times I did feel satiated mentally and physically after a meal were when my mom cooked peas, fish, and whole foods. I still believe that's why I used to eat peas like crazy when she made them (my body wanted those nutrients and the protein in them) and why I love fish and collard greens. My body knew what I needed!
Another incident that sticks out from this time is how many pancakes I could eat... seven during one competition with my grandfather. They never did fill me up, but I loved the taste. Looking back, this was a clear indicator that something was "off" with me. I craved wheat, yet it never satisfied me.
Looking at pictures of myself at age 8 or 9, I was chubby by that point with the typical gluten belly... a pooch on the upper or lower part of one's stomach (or both). You see, I was eating, but my body was likely malnourished and still said, "give me food." This continued on through the years, and I'll talk more about how this hunger manifested at various stages in my life.
I also spent most of my time reading. I realize now that it was likely because I never felt that great. Reading didn't demand much of me, and I could lie down or sit while I did it.
My other main pursuit was dance, and I liked ballet. The slow movement worked for me. I was NOT athletic at all, and I knew running or another sport like that would never work for me. My body was speaking, but I didn't know how to decipher its messages.
What Is the Meaning of Life? Depression by age 9
I remember battling with feelings of low self esteem and depression at a young age. I wondered about the meaning of life and whether living was worth it. Yes, I did, and I'm talking about that for the first time now.
I also had OCD (obsessive/compulsive) symptoms at this age, though I wouldn't have known to call them that-- repetitive, bothersome thoughts I couldn't seem to banish. I guess you could say I was a serious child, not known for my bubbly personality. :) Some of that was personality type, but much of it is that I just didn't see what there was to be really happy about. All of these emotional/psychological symptoms are also part of gluten intolerance/celiac.
My Story: Part I... Gatorgirl and Tonsillitis
Every story of someone with gluten intolerance (or even celiac disease) is different. Mine continues...
My doctor just did a celiac panel that I should have the results of by the end of this week. She wanted the test run after I told her about my experience with gluten and that a close family member has two autoimmune diseases and she was intrigued after hearing some of my story and seeing the changes in my blood work.
We'll see if it turns up anything. If not, that's fine. It would be good to know for tax purposes and to make things easier for me (having a doctor's vetted diagnosis like that). Many times, though, the panel shows nothing, and even the colonosopy can produce a false negative. I do plan in the future to have an Enterolab test when I have some extra money to throw around. :) It's a test that looks at stool samples for the genetic markers, etc. of celiac and gluten intolerance.
Okay, back to my story. So, let's begin at the beginning, shall we? I expect this story to have many parts (maybe up to ten, I'm not sure). I am trying to give a faithful and complete retelling of my life in the hopes that my experiences will help someone else.
January 20, 1977... A Gatorgirl Is Born: My thirty-fifth birthday is close, so it seemed fitting to start writing the story of my life this week.
As a baby, I dove for my bottle and was known as Gatorgirl due to the zest with which I drank it. I was also only 5 lbs. 15 oz. at birth. I'm thinking that I came into the world hungry and it makes me wonder if I was already experiencing the effects of undernourishment/inability to absorb nutrients in the womb and at birth that gluten intolerance or celiac causes in most people. I think it's quite possible.
I also had terrible colic as a baby and spent hours of my life screaming in pain. Back then, it was just considered the effect of having a stomach that was still immature or not fully formed. Now, it's a sign of an allergy or other issue. I have since read that many, many gluten intolerant or CD folks had terrible colic as babies. I was tough to deal with, and my mother will say that to this day. She and her friends who remember those days still chuckle and say I was a "demanding child."
Fast Forward to Early Childhood... the Tonsillitis Years
From age four on, I guess, I had terrible tonsillitis. I was always at the doctor getting antibiotics and developed a penicillin allergy quickly. By age six, my tonsils were gone via a tonsillectomy. One of the many symptoms of CD or GI (from here on, I'll shorten celiac disease and gluten intolerance to these) is repeating tonsil infections.
If only I had known...
My health improved after that, but other things popped up rather quickly. I'll cover those in Part II.
My doctor just did a celiac panel that I should have the results of by the end of this week. She wanted the test run after I told her about my experience with gluten and that a close family member has two autoimmune diseases and she was intrigued after hearing some of my story and seeing the changes in my blood work.
We'll see if it turns up anything. If not, that's fine. It would be good to know for tax purposes and to make things easier for me (having a doctor's vetted diagnosis like that). Many times, though, the panel shows nothing, and even the colonosopy can produce a false negative. I do plan in the future to have an Enterolab test when I have some extra money to throw around. :) It's a test that looks at stool samples for the genetic markers, etc. of celiac and gluten intolerance.
Okay, back to my story. So, let's begin at the beginning, shall we? I expect this story to have many parts (maybe up to ten, I'm not sure). I am trying to give a faithful and complete retelling of my life in the hopes that my experiences will help someone else.
January 20, 1977... A Gatorgirl Is Born: My thirty-fifth birthday is close, so it seemed fitting to start writing the story of my life this week.
As a baby, I dove for my bottle and was known as Gatorgirl due to the zest with which I drank it. I was also only 5 lbs. 15 oz. at birth. I'm thinking that I came into the world hungry and it makes me wonder if I was already experiencing the effects of undernourishment/inability to absorb nutrients in the womb and at birth that gluten intolerance or celiac causes in most people. I think it's quite possible.
I also had terrible colic as a baby and spent hours of my life screaming in pain. Back then, it was just considered the effect of having a stomach that was still immature or not fully formed. Now, it's a sign of an allergy or other issue. I have since read that many, many gluten intolerant or CD folks had terrible colic as babies. I was tough to deal with, and my mother will say that to this day. She and her friends who remember those days still chuckle and say I was a "demanding child."
Fast Forward to Early Childhood... the Tonsillitis Years
From age four on, I guess, I had terrible tonsillitis. I was always at the doctor getting antibiotics and developed a penicillin allergy quickly. By age six, my tonsils were gone via a tonsillectomy. One of the many symptoms of CD or GI (from here on, I'll shorten celiac disease and gluten intolerance to these) is repeating tonsil infections.
If only I had known...
My health improved after that, but other things popped up rather quickly. I'll cover those in Part II.
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