I thought I'd check in here. I know it's been forever, but the gluten free journey is still in the forefront of my mind. What's new with me? Well, I'm 31.5 weeks pregnant now, due in late June. :) I credit this pregnancy partially to being very strict with getting serious about things in December of 2011...for good. By the next September, I was pregnant. I am feeling quite well, especially for an old pregnant lady (hey! I am 36).
I will also say that this time around, I have only gained 13 pounds so far. I haven't been exercising like a fiend to keep the weight off either. I walk most days if I do anything. And I eat--a lot because I'm growing a baby, and I'm hungry. My body just isn't holding on to every calorie now or retaining water like crazy like it did with my first child (I think I gained 42 lbs. total. Yep. Seriously, and I was watching what I ate and was already quite overweight as I am now. Too bad I didn't know what to eat to feel better). I think kicking gluten to the curb has been a key to much less weight gain and a lack of the horrible edema I had the first time around.
As far as other stuff, my almost 10 year old daughter is going to have blood tests (celiac panel) done. She is pretty "healthy" as far as body weight, etc. The problem is that she's been sick on and off for about 9 months now. It started last fall with allergy stuff, and she has been to the doctor about six times this year so far--at least once a month. That is unacceptable to me--if there is something I can do about it. She had been eating less wheat, and her allergies had cleared up well for the last month. The last couple weeks, she's been into some wheat cereal, though. Then, strep hit; I'm not saying that is related, but I wonder about immunity and other stuff the more wheat one eats.
And... I know all about that baddie strep. I had it over and over and over again from age 4 on until my tonsils came out at age 6, I think. Guess what strep and other infections are linked to? Yes, gluten. I have read that over and over from people who are celiac or gluten intolerant. So are recurring allergies. I figure with DD having autism and having complained of the same "growing pains" I had as a kid, it won't hurt to have the panel (vits, celiac, and thyroid). The panel might show up negative as it has for me. If DD keeps getting sick, I'll push for other means of diagnosis, etc. if I need to. I have always had a good sense of things. I KNEW first that she had autism. No one else believed me. I feel the same knowing now. If my daughter is gluten sensitive or celiac, I don't plan to bury my head in the sand and let her suffering reach the proportions that mine did. I wouldn't want anyone to go through the years of hell that I did before figuring out what was going on.
I was also thinking that I wrote a list of my gluten intolerance symptoms before, but the more time has gone on, the more I've added to the list. Reading blogs with others' experiences will really make things click for you that didn't before. I figured I'd write those symptoms out along with which have resolved. There are many more than these that other people have experienced. I think the main thing to know is that if you have gluten intolerance or celiac, your health issues are not just going to go away if you ignore them and continue to eat gluten. They will generally only get worse. But if you stop eating gluten, they will very likely get much better. Mine have. So here goes nothing. I'll add to these as I think of them:
terrible colic
huge appetite all my life
craved gluten filled foods
recurring tonsillitis and tonsillectomy at age 6
bloated belly from a very young age...even when I was thin (I could never understand why it bloated up, seemingly no matter what I ate. I would look different on different days).
bathroom issues
bad "growing pains" in my legs
nosebleeds as a child
lethargy from a young age (It's getting better)
brain fog most of my life as far as I can remember (much improved!)
depression of varying degrees (so much improved)
feelings of isolation
exhaustion (Many days I lived for naps...especially once I hit age 25 or so on.)
aches and pains everywhere
elevated liver enzymes (gone)
extreme paleness
bloated face
puffy eyelids (all much improved)
high cholesterol (gone)
low B
low D (both resolved)
high ANA number (lowered now)
crankiness (much better)
infertility (not now...finally)
inability to lose weight once things got really bad no matter what I did (when I went gluten free, this changed. I am well below my high weight now, even pregnant)
family history of autoimmune disorders
food cravings
itching on skin and scalp (shampoo with wheat or barley does this to me as do eye creams containing barley from what I have found).
scaly bumps on my scalp after using gluten containing shampoos
hair with build up on it (Hair dressers had commented on this for years, and I could not figure it out. My hair grows lifeless, limp and weighed down with gunky spots in it--I know, gross--when I use gluten containing products on it. Very strange, but true).
hives or a red rash on my neck and chest at times after ingesting gluten or using gluten containing products
irregular heartbeat (not anymore)
rapid heartbeat
trouble catching my breath at times
migraines (rarely)
inability to wake up easily
feeling 80 when I was 30 (not anymore)
muscle weakness
irregular cycles
screwy hormones and insulin levels (possible PCOS. I am still dealing with some of this, but my blood sugar levels are good right now during this pregnancy.)
binge eating disorder (what I know would be labeled that. I really thought I had an eating disorder. Turns out, I have a problem with gluten. It makes me crave more food and eat like a wild animal. Now, I can enjoy some of something and leave the rest. I have sweets in my house and don't binge).
a feeling that I was not "normal"
twitching eyelid on and off that I rarely if ever have now
joint pain (not now, and I'm still a big girl)
bronchitis and sinusitis for years every winter (not now, though I still have sinus issues sometimes)
panic attacks when things were at their worst that came seemingly out of nowhere
dry, itchy eyes most of the time (fine as long as I don't ingest gluten)
gluten ataxia
clumsiness
slurred words
gnawing/burning/unsettled sensation in my stomach after eating (gluten). It was like I was never satisfied.
pain where my liver is (gone for a long time now)
spots of enamel gone on my teeth (yellowing and other related issues)
brittle nails
bleeding gums
terrible memory that was once good
memory loss
low heat tolerance (all of these are much better)
compulsive overeating (not being able to ever feel full. This is resolved as long as I don't have gluten).
If I do eat gluten, I find it takes me between 48-72 hours to lose the bloat and other symptoms. It makes sense to me now why I always felt bad! Every day started a new cycle since I was eating gluteny foods regularly.
There are probably many more symptoms I am forgetting. I have a close relative that would have her own list of probably fifty of them as well (many very different from my own, some the same).
Sufferers and experts have identified over 300 symptoms associated with celiac and gluten intolerance. This list is often used by celiac treatment centers. How many do you have?
http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/#.UYCIEkrov5k
Sound familiar? Have any to add? I know there are many, many other symptoms and illnesses related to gluten intolerance and/or celiac. Every story is different, but if you read enough of them, they start to sound very similar. It's easy to see the overlapping threads in these tales of woe.
With my daughter's struggles, my pregnancy, and other things, I've been thinking a lot about health lately. If you can reach for feeling great most of the time, why not do it? Why settle for recurring health issues that might be solved with making a change? Why feel like you are 50 when you are 36...or 25? There are so many people who have health issues they have little control over (like cancer and many other problems), but if gluten is a root cause of my problems, what is my excuse? After all, it's my life...and yours and the lives of those you love. That's why I'm writing again here. If one person reads this and sees herself in what I've been through, the time was worth it. If it causes you problems and pain and has taken your health, don't let gluten steal another minute of your life...or the lives of those you love.
Tuesday, April 30, 2013
Thursday, February 2, 2012
Just life...
I am feeling pretty darn good these days. I am amazed at how my health is slowly returning to me. I remember when it felt tough to clean up the kitchen, wash clothes, do simple tasks well. Now, it's a breeze. I knew I was sick, but I'm realizing just how sick I've been.
I still have days where I feel tired and I can usually link that to staying up too late (I'm guilty of this often as a night owl!) or getting gluten from eating out/cross contamination in some way or in something I didn't think about, but it never lasts all day anymore. I think I get more done in one day than I did in two or three in the past. Pretty sad.
And I'm still marveling at the feeling of normal hunger and usually not feeling hungry. Amazing. I am honestly pretty happy with where I am right now in my healing. I plan to continue on with it and monitor/journal for food reactions, etc. as I've been doing. I am thinking that I want to lose more weight, sure, but I do better focusing on every day health and ignoring the weight most of the time. Weighing in a couple times a week seems to help me do that. Then, I can listen to the hunger/fullness cues I now actually have! And if something is off with those, I know something is weird about what I've eaten or that I need more protein or water. Pretty easy to hear it now.
I'll post more when I have something that's not boring or when I hit a bump in the road.
I still have days where I feel tired and I can usually link that to staying up too late (I'm guilty of this often as a night owl!) or getting gluten from eating out/cross contamination in some way or in something I didn't think about, but it never lasts all day anymore. I think I get more done in one day than I did in two or three in the past. Pretty sad.
And I'm still marveling at the feeling of normal hunger and usually not feeling hungry. Amazing. I am honestly pretty happy with where I am right now in my healing. I plan to continue on with it and monitor/journal for food reactions, etc. as I've been doing. I am thinking that I want to lose more weight, sure, but I do better focusing on every day health and ignoring the weight most of the time. Weighing in a couple times a week seems to help me do that. Then, I can listen to the hunger/fullness cues I now actually have! And if something is off with those, I know something is weird about what I've eaten or that I need more protein or water. Pretty easy to hear it now.
I'll post more when I have something that's not boring or when I hit a bump in the road.
Friday, January 20, 2012
Blood Test Results...
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?
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?
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...
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