Another Piece Of The Puzzle, 30 Years Late. Do I Laugh Or Cry?

[MitziG]

So, my childhood recollections are of throwing up ALOT. I remmeber being told by my mom that I was allergic to wheat, so I always ate Wonder Bread. I remembered having allergy testing (the skin prick kind) So the other day, I asked my my mom,

"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...

[Poppi]

It's hard to look back at all the years we didn't get to live to our full potentials.

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.

[mamaw]

Thanks for sharing your story.ANd years ago that is the way it was... sooooo sad...And to some point it still is today only I don't hear much ever about out growing celiac any longer.. Small step for all those years..

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!

blessings

[areyoufreakingceliac?]

Oh I hear you! My Mom jsut recently said, "You did have a lot of stomach problems as a kid. I never thought to ask the doctor." You never thought to ask a doctor when your kid had to lie down after every meal? Just be thankful we figured it all out when we did.

[eatmeat4good]

I remember throwing up on my first grade teacher's Christmas present on the school bus and I handed it to her saying, "Merry Christmas, Sorry I threw up on it."

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.

[rosetapper23]

Ah, yes, the "lost" years. We all have them, it seems. My childhood Hellish experiences pretty much revolved around bone, joint, muscle, ligament, and tendon problems. I didn't have any stomach issues until my mid-40's. All through school, I was the kid who fainted all the time (from iron anemia), whose teeth broke, who had no energy, and who had to be picked up and carried back to class after PE because I would collapse when my muscles, tendons, and ligaments couldn't take the stress. I spent my entire childhood feeling different and embarrassed about it, and I absolutely abhorred PE. My bones and joints ached all the time, I was uncoordinated, and my muscles would inexplicably stop working if I was asked to do an exercise for more than a few repetitions. Add that to the fact that my parents couldn't afford to buy me glasses, I was so near-sighted, I kept getting hit in the face and head with balls. Did you all have similar experiences in PE? I learned to love exercise AFTER leaving high school because I finally convinced my doctor to let me see a physical therapist--by that time, I could barely walk and experienced muscle spasms and tremors pretty much 24/7. The physical therapist told me that people like me (who were born with Rickets) usually began physical therapy as babies and continued with physical therapy throughout their lives. I learned a great deal from the physical therapists I've seen over the years and enjoy exercises that strengthen my naturally weak muscles and stretch the overly tight ones. However, what helped the most was finding out that I had celiac when I was 47 and following a gluten-free diet. No more bone, joint, muscle, ligament, or tendon issues! Except for injured tendons and ligaments, I no longer have any issues. Are there others of you out there who experienced these types of difficulties as children? I know that there are studies about how celiac affects muscles, etc., but I'd like to hear first hand from the "experts"--you!

[MitziG]

I appreciate so much hearing all of your stories. I know it doesn't change anything for any of us, but just knowing you aren't alone in the anger and frustration over lost time and lost health is comforting. It frustrates me so much now that I see SO many people going through similar health issues, and when I try to tell them about Celiac, they blow me off. I wish SO much that just ONE person would have suggested it to me over the years, and here I am telling them something that could change their life and they don't care. I want so badly to educate people, especially doctors. I wish they would just start screening people for Celiac at least. It could make such a difference!

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!

[rosetapper23]

I agree with everything you've said! My son, who was diagnosed at 16, is indeed lucky and will not suffer my long-suffering fate. This is one of the silver linings....

[mushroom]

As awful as it was, what you went through, the rest of your life is now too short to be able to afford the time to cry over it So laugh and live it as joyfully as you can because you have been given a reprieve which deserves celebrating, eery minute of every day. Your mom is not the first person that didn't know Wonder bread is made from wheat and, unfortunately, probably not the last either I am so glad your children are getting a better start at life than you did..

[researchmomma]

My neighbor sat next to a woman at Sammy's Woodfried Pizza. She ordered gluten free and he said "my neighbor has Celiac, do you?". She said yes, I suffered for almost 60 years and NOW they diagnose me at the age of 70. She was so angry and bitter that she suffered her entire life and doctor after doctor told her it was all in her head. She said she feels great now though and she is happy about that!

[YoloGx]

These stories are so amazing--they make me cry for all of us who suffered without anyone to help. Thankfully now people are starting to recognize this condition earlier on. However in my family there is still a lot of denial and thus a lot of continued suffering. But there are other people that I know (including my boyfriend) who do see and hear and are motivated to make the changes they need to be healthy.

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.

[beebs]

Sounds very similar to me, especially the bit as a child throwing up all the time, my mother took me to doctors and they told me I had a 'weak stomach' - when I said that to my kids paed GI he just pissed himself laughing - I had never thought to query it, but apparently there is no such thing as a weak stomach Doh! I didn't work out I had a problem until I was 33 years old - and add to that more autoimmune disorders that are coming to light (and I believe they were trigger because I was an undiagnosed celiac eating gluten for 33 years) and I too am really annoyed!

[Googles]

I threw up a lot as a kid. All the way through elementary and middle school (maybe once a month some more some less). I wasn't diagnosed until I was 26. I never thought that the throwing up could be connected. I always thought it was stress (there was a lot of stress in my family). My parents never took me to the doctor for it. My family only went to the doctor for "major" things. My brother had crohn's and was in and out of the hospital, so a little throwing up was not considered something to sweat about. I never thought this might be connected. I also had a lot of the other things like when I get glutened now. I had really bad anxiety, and cried at the drop of the hat. I would become emotionally overwhelmed at the drop of the hat. I didn't have any other major physical symptoms that caused problems (that i know of, though I am much shorter than everyone else in my immediate family). I wonder now....

[beebs]

I have severe growing pains and constant gushing nose bleeds as kid as well - every day for two years. And I always had mouth ulcers. Always told it was nothing blah blah. My Rheumy says that those can be early indicators or autoimmune diseases.

[rosetapper23]

Yeah, Beebs--I can relate. My son had daily nosebleeds from the time he was two. One of my neighbors finally called me up when he was six and said, "So, hey, your son just bled all over my house. Does he have AIDS or something? The whole neighborhood wants to know." Geez...... And then my daughter had mouth ulcers and stomach pain throughout her entire childhood, and her dentist was right on when he told me that she must have some kind of auto-immune disease because the mouth ulcers weren't ordinary canker sores. And growing pains? OMG! Mine were so terrible, I had to soak in a warm bath every morning just to be able to walk to the school bus stop. Yes, ah, the memories...

[beebs]

I have only had one or two mouth ulcers in the year since going gluten free - I usually have several a month - amazing to think isn't it?? These warning signs there for us all to see - but noone (medical) really understands!

[cyberprof]

I appreciate so much hearing all of your stories. I know it doesn't change anything for any of us, but just knowing you aren't alone in the anger and frustration over lost time and lost health is comforting. It frustrates me so much now that I see SO many people going through similar health issues, and when I try to tell them about Celiac, they blow me off. I wish SO much that just ONE person would have suggested it to me over the years, and here I am telling them something that could change their life and they don't care. I want so badly to educate people, especially doctors. I wish they would just start screening people for Celiac at least. It could make such a difference!

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!

Thanks for this thread Mitzi.

For me:

Weekly mouth/canker sores - check

Arthritis at age 16 - check

"Growing pains" daily from age 8 - check

Decaying teeth - check

Horrendous stomach pain after eating - check

Big D almost daily - check

I am so grateful that I was able to have a relatively normal life but it could have been much better. I just ignored the pain after docs hinted that I was a hypocondriac. But my over-riding gratitude is that we were able to help my son so that his teenaged years weren't spent sick and weak and that he is now healthy. And at least one of my siblings listened and is gluten-free.

[KatieCartoon]

Although I mostly was off gluten for years, I did not know I needed to be off all trace gluten.

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.

How does trace gluten hurt us? I mean if I get a trace of arsenic it isn't a big problem. I just don't understand the logic. I have many problems that can be caused by cCeliac,but I think I may be hoping for a miracle if I just assume everything that is wrong with me is from gluten. I mean my depression may be just depression right?

[mushroom]

Well, yes, a lot of disease entities exist on their own, with no definable cause. In fact, it probably was once thought that there was really no definable cause for most of what ails us. But 100 years from now people may well be saying, can you believe that back then they didn't know that x was caused by y. Until proven otherwise, if something is associated with or often co-exists with gluten intolerance, treat it as being caused by gluten. Now, not eating gluten may not cause it to go away, but it may improve it somewhat. On the other hand, it may disappear entirely -- stranger things have happened -- or it may be totally unphazed by a gluten free diet.

Many people report their depression lifting completely once gluten is eliminated. Many autism spectrum behaviors disappear, temper tantrum children become more amenable and sometimes, to their parents' amazement, delightful. Joint pains can disappear, diabetes brought under control - you would be surprised. But there are, of course, no guarantees.

Trace gluten hurts us because it arouses our autoimmune system to make antibodies to fight it, and it is these antibodies that do the damage. And antibodies have to react to the smallest of stimuli to prevent the viruses and bacteria that invade us and are smaller than the gluten particles that your IgA antibodies are reacting to. Now, it is inevitable that you will not be able to constantly maintain 100% gluten free, but that should be your aim - you can do no more than your best. But if you are careless about gluten you will have antibodies continually on alert marching around and doing their damage. And if you continually get enough traces of arsenic - well, murders have been committed that way.

I see this is your first post, so welcome to the forum, and I do hope that the depression you have apparently been fighting is lessened soon.