Another Piece Of The Puzzle, 30 Years Late. Do I Laugh Or Cry?
Posted 07 January 2012 - 09:37 AM
"Mom, isn't it a shame that when they found out I was allergic to wheat, they never thought to test for Celiac?"
Mom: "Oh you were never allergic to wheat honey."
Me: "Say what?"
Mom: "No. Your allergy tests were negative. But you were throwing up several times a week. So I told your doctor, "Listen, this kid has the flu every week! So the Dr. said you couldn't tolerate wheat and high fiber. But that you would outgrow it."
SO...I am guessing, apparently this dr suspected Celiac, but like many doctors, just didnt know enough about it to bother explaining it thoroughly? Or he didnt see the need for a test?
Anyway, mom started sending me peanut butter and jelly on hardtack to school, or sometimes rice cakes. At some point we switched to Wonder Bread, but she didnt like that because she knew it wasn't healthy. Apparently she did not understand that wheat bread did not have to be brown.
I remember eating sherbert instead of ice cream, because ice cream had wheat in it. Huh? Was ice cream different in the 1980's? I remember having corn bran and rice chex for breakfast instead of Wheaties. I remember throwing up alot of pizza, pancakes and oatmeal.
I did get some better. I didnt throw up as MUCH. ANd when I got to be a teenager, I quit throwing up altogether or several years. I switched over to diarrhea. We all thought I "outgrew" my wheat allergy and just inherited my Dad's "sensitive stomach."
At 16 I started puking again. Horrible stomach pains. This time we saw two different doctors. They did an upper GI. They said I probably had small ulcers that werent visible. Gave me cartons of Maalox and an RX for Pepcid.
At 30 I had attacks of horrible, excruciating stomach pain and vomiting. The doctors thought gallbladder. they did an altrasound. Did the HIDA Scan. Told me there was nothing wrong with me. "I was upset. They said, "What, you think we should just cut you open and look around?" I stormed out of the office in tears.
For 32 years my stomach issues waxed and waned. I was always fatigued, never had the energy to do anything. Struggled with infertility, finally got pregnant and miscarried. Had two miserable pregnanacies and then slept through my childrens early childhood.
Spent thousands and thousands of dollars on tests and scans and medicines that did nothing but bankrupt us. All because ONE doctor, 30 years ago didn't EXPLAIN HIMSELF THOROUGHLY??? Really?
I know so many of you have been through similar, and far worse experiences. I am just struggling with this latest revelation a bit...
Posted 07 January 2012 - 10:01 AM
I was always nauseous, never played sports (didn't have the energy), had a hard time concentrating in school, suffered from osteoarthritis and chronic back pain from my early teens, didn't finish my degree because I just couldn't focus even though I knew I was smart enough, suffered from infertility and repeated miscarriages ....
But. Given the choice between laugh and cry, I always choose to laugh. My life is amazing NOW and that's what matters. I still live with a level of pain that would likely send the average person to the ER but it's better than it has been since I was 9.
Yes, I wish I had been diagnosed as a child but right now I am 35, happy, healthy and looking forward to the next 60+ years I have left to me.
Busy mom to 3 great kids (4, 8 and 18)
Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes
Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.
Posted 07 January 2012 - 10:01 AM
But today thanks to Dr Fasano & Dr Green more are becoming enlightened...and more are getting Dx'd. That I'm thankful for.. People in their 70"s & 80's now know they were not crazy that they do & did have a true illness..
Hope ypour future is much better than your past!
Posted 07 January 2012 - 10:12 AM
Posted 07 January 2012 - 11:50 AM
and I had stomach aches all the time and laid around as a kid and didn't want to do anything. My family thought I was lazy. I remember if I stayed home from school my mom ignored me because she didn't want me to get extra special attention for staying home. She thought that if she did that it made me wanna stay home more. How sad sick and lonely that was. She was a good mom, but dam I wasn't faking.
Then I slept through everything extracurricular in high school and college. I barely made it to class and home before I would crash.
I too, slept through my son's childhood and I feel terrible about it. While everyone went to the zoo, I would stay on the couch. If I went, I would sleep for two days afterward. It sucked to be so out of it during my kids develpmental years. And here he is 17 and about ready to start his own life and here I am just now well enough to be a mom. It isn't fair. But at least he knows that gluten makes him extemely sick. And when I feel sad about all of my lost years....well, I think that at least my son won't have to sleep through his college years and he will be able to function. You see, while I was sleeping on the couch, he was wheezing with asthma and barely able to function himself due to muscle weakeness and fatigue. So we two just slept whole years away when we weren't going to yet another Dr. to find out what was wrong with us. One year ago we both woke up and when we got rid of the gluten we started to live. I'm sad to the bone about all those lost years with him, but at least I know that he won't have to be 48 before he gets an answer. All of his asthma is gone. All of his fatigue and depression are gone. He is wrestling in school now and this is his first sports participation ever.
I have a hard time staying in the here and now. Things are great because we both feel wonderful for the first time in our lives. So I guess I better just try to laugh at the fact that I threw up on my teacher's present. And try to forgive myself for spending years trying to bake the perfect loaf of bread because I didn't have the energy to do anything else. How ironic is that? I never knew why when I tried to be suzy homemaker I would get horribly depressed and anxious. Gluten can destroy your whole life.
Thank you for sharing your story. I really related to the part about sleeping through your children's childhood. I hate that part more than anything I lost. For those who are reading my story for the 45th time...sorry bout that. I keep hoping it will get better if I get it out. Thanks again.
Just re-read this. Wow...sounds so depressing. I'm really not. The truth is I feel that I have been dropped off on a strange and wonderful new planet and I can live in the real world now. But every once in a while I remember where I came from. And I hope "they" never come back for me. I'm staying in the land of Gluten Free.
Posted 07 January 2012 - 12:45 PM
Posted 07 January 2012 - 01:14 PM
I am grateful to at least have found out NOW, rather than 30 years from now. And I am very thankful that my kids were dx early so they will be spared a lifetime of misery!
Posted 07 January 2012 - 01:33 PM
Posted 07 January 2012 - 01:35 PM
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
Posted 07 January 2012 - 01:44 PM
Posted 07 January 2012 - 03:51 PM
I was first diagnosed with celiac sprue when I was 4 or 5 months old. I was "lucky" since I reacted to eating the baby porridge and formulae. I got pneumonia and stopped growing. They put me into isolation at the hospital. Changing my diet so I was off all gluten grains was the only thing that worked.
My first memories were of being healthy and strong. This lasted my first four years. Everyone else would get sick but me. After that however things slowly started to change--though it took a couple of years. I was reintroduced to wheat--I actually remember that morning, being allowed to choose the shredded wheat instead of rice porridge. The doctor thought I had outgrown my sensitivity since I continued to grow. However what they didn't notice is that I progressively moved from being a very healthy, extremely strong and coordinated and intelligent child into a sickly, weak one with periods of high intelligence and being subnormal, unable to talk clearly--fumbling with my words etc. I also started having visions occasionally--seeing and hearing people who weren't there though I did not make a fuss about it since I quickly gathered that was considered being crazy, which I wanted none of.
I hated school lunches, especially things like sloppy joes and velvetta cheese. I started not eating lunch because it made me feel so strange. I didn't really like breakfast much either. I had trouble sleeping and would always wake up last with a terrible coated tongue and sore gunky throat. I was very thin with a large belly. I did not get diarrhea; instead I got constipation, ringing ears, the sore throat, sores in my mouth, a white tongue, nasal congestion and feeling sleepy and out of it but as I said, difficulty sleeping. I would have to hypnotise myself to sleep using stories I made up. I actually would go into a trance with the images go around in a circle which I think is why it was difficult for anything or anyone to wake me up.
I was regarded with contempt by my older brother and sisters since I was always the first to get sick and had it the longest, as well as being very uncoordinated and "out of it". This after having done feats of coordination as a small child. No one seemed to notice. I just notice in retrospect, especially being reminded of it f om old photographs a few years ago, though at night I had dreams back then of being very fit.
I liked walking, but noticed sometimes my gait would miss and I would fall to the ground to my knees. Sometimes I passed out. Everything seemed like it was in a mist. I became obsessed with figuring out what was real and what was not. I would rely on my habits to make up for the fact my consciousness was always blipping off. I could not trust myself. One moment I was doing something and the next who knows what and the next I was back again, having to retrace my steps.
I had terrible gum boils after I got my silver amalgam fillings. I had them for years. The dentist said nothing. Eventually they started to implode my molars. My teeth never hardened up until I completely went off all gluten years later.
At age six I started wetting my bed at night after having quit that when I was three. This was humiliating as you might imagine. It also did not make me popular with my mother. She even got me one of those metal electric devices to put on the bed to shock me awake at night when I would get wet, however it never woke me up. Finally it was so falling apart she took it away.
I used to peel my fingernails. They were terribly striated and flaky with large white spots.
Originally I loved exercise and was quite good at it. I even wanted to be either a gymnast or ballerina. But then by age six I became too weak and uncoordinated to do it any more--except for walking, which I always loved. When I did finally join the girls basketball team in the seventh grade I quickly developed a bad bladder infection and infected large toe from jumping around so I had to quit. I was determined to ride a bicycle and eventually learned how by the time I was a teenager. Before that I was always falling off. This from a girl who could balance on the one inch thick top edge of a fence and could do cartwheels and somersaults and the splits and would dance around on the tips of my toes and quickly climb up to the top of tall piles of rocky petroglyphs (my parents were archaeologists) and loved to climb tall trees etc. when I was ages four and five before the gluten really got to me again.
I too did not get glasses until fairly late in the game. My vision was better than most of my siblings, so my mom thought that was good enough. I became very good at guessing--though of course sometimes I was wrong. I didn't get glasses until just after I was married when my husband noticed I didn't see some of the cars I passed too closely and then asked me about the snow on the mountains--and I said: "What mountains?"
I didn't complain since we were mostly Scottish, and complaining just didn't do anything except win contempt.
By the time I was 23 I developed recurring kidney infections and lost half my right kidney while I was in graduate school studying political science. Of course I had to quit my studies. The doctors wanted to put me on antibiotics permanently. However they made my ears ring and I got red welts on my joints from them, so I quickly declined. Fortunately my grandmother suggested I might be allergic to some foods, though she never mentioned the wheat family. So I went on an elimination diet and figured out that I had many food intolerance including the wheat family. I also started exploring the world of herbs. In many ways things like dandelion root, marshmallow root and uva ursi saved my life.
I never thought however that I had celiac since no one said a word and I knew nothing of the condition. I am upset at my parents for never saying anything. However they really believed celiac sprue was something you grew out of--just like my mother had supposedly grown out of hers (--instead it just made her kind of crazy plus she had joint and eye problems as well as constipation and frequent bladder infections). They really had no idea how serious a condition it was. So who really is to blame??
As it turns out my eldest sister has celiac as does my younger brother who has Down's syndrome. My sister the nurse however is in deep denial even though she has all the classic signs--constant diarrhea, osteoporosis, depression and a bad disposition with past migraine trouble. She has gotten tested for it with an endoscopy and they found nothing. She recently has started fainting and broke her other hip. And my older brother bumbles through life with joint pains and depression, memory problems, confusion and no real sense of purpose, smelly gas partly being off gluten but never totally off it either. He helps himself though by riding his bicycle a lot (fast). He used to run, but now his ankle joints are too fragile for it.
Although I mostly was off gluten for years, I did not know I needed to be off all trace gluten. I was always getting sick, eventually for months at a time. However I avoided getting more kidney problems for the most part. My herbs served me well. I was constantly detoxing using them. I was getting weaker and weaker over time however. My nerve sheath was down to 50% and I started shaking. My heart was fibrillating a lot over any kind of small stress. I had anxiety over nothing--like cleaning my room although I have always been good at organizing people for events or construction or an art organization and delegating effectively. I also got osteoporosis of the neck.
Finally my eldest sister alerted me to the necessity of being off all trace gluten. I scoffed but then tried it. Instead of getting sick all the time, I just got diarrhea (big surprise!) for a day or two if I got exposed to gluten. I also got a bacterial infection in my lungs and eventually my kidneys after being glutened and taking my mother to the hospital the following day. I learned to lie low when and right after being glutened so this would not happen again.
Since then, my heart no longer bothers me (since I take nattokinase and co-enzyme B vitamins) and my nerves have greatly improved as has my general health and clarity of mind--especially since I also discovered I also have salicylate sensitivity too. I actually don't space out any more overall. I don't see visions of people who aren't there or hear music or voices of my mind's own making. Now I rarely if ever get sick, and if so it usually only lasts 3 days at most. I am sleeping better at long last though I still have to take epsom salt baths and often a homeopathic for restless legs. I walk most every day. My joints, bones and tendons are finally stronger, especially taking plenty of minerals including silica drops.
And finally now I am on a more or less macrobiotic diet with rice and fish and beans (with digestive enzymes for that!!) and lots of low salicylate vegetables. This is helping my liver and gall bladder out a lot, with the addition of my old favorite, dandelion root tea with barberry and nettles now and then.
I am now 62 yeas young. I wish like the rest of you that I had known that I had this condition a lot sooner since I literally wasted years being sick. However it has also given me a sense of compassion for others I might not otherwise have developed to as great a degree. Certainly having this condition has been humbling. It did I think develop my imagination to a high degree, helping to make me the artist and poet that I am. I think it also helped me learn how to delegate since I literally couldn't do so many projects by myself given my condition.
I figure I still have a lot of good years left in me. I am a lot stronger and more flexible than many people my age and in far better health. Pretty ironic, eh? But that is what many of us get to enjoy finally, a more productive, healthier old age despite all the suffering we have gone through in our younger years.
Posted 07 January 2012 - 05:26 PM
Posted 07 January 2012 - 06:02 PM
Posted 07 January 2012 - 06:05 PM
Posted 08 January 2012 - 12:59 AM
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