Stories

[Fishy Guy]

as I did before with other posts, I am writing a paper for school on a health disorder, I chose celiac disease mainly because I already know a lot about it and have the disease myself. my story isn't that amazing, but It would be pretty cool if I could get some of your guy's stories. Don't worry, I will quote. Thanks!

~Phil

[Sweetfudge]

what specifically do you want to know about? throw out a few general questions for us it's a good topic to write about. i did a paper on celiac for my biology class last year. great way to spread the understanding!

[flourgirl]

Do you just want the down and dirty about symptoms? Or do you want like a life history with all of the years of doctor shoulder shrugs and guesses. misdiagnosis and strange cures? I'd be willing to "talk"....no bright lights and torture needed, I just need to know how much and what type of information you are looking for. Thanks.

[Fishy Guy]

well, I would like to know basically what your symptoms are, how you found out you were a celiac, and basically the difficulties you have had with and as a celiac. ~Phil

[nikky]

well, I would like to know basically what your symptoms are, how you found out you were a celiac, and basically the difficulties you have had with and as a celiac. ~Phil

I was pretty much asymptomatic, the only thing i had was anemia which could of been down to anything (all the females in my close family had suffered with it at some point and none of them have coeliac). I found out because a locum doctor checked me for anemia then wanted to know why i was aneamic and so she checked for coeliac. Needless to say it came back positive.. over 250 infact when the norm from that lab was below 10.

I was then referred to a peadiatrition and gasteroenternologist who did a biopsy fully expecting it to be positive ... and it showed: nada.. he had taken about 7 samples from as many different places as he could reach, he got 5 pathologits to look at them .. but no one could see any damage at all, i guess you could say that was a difficulty .

So he repeated the bloods which came back defiantly positive and a little confusing (i mean i was the only one in my country with bloods so high and then having a negative biopsy in the last 5 or so years and the only one he had treated like that in the last 10). After a few more checks he decided to scrap the biopsy and go with the bloods. (He wasnt prepared to do more than the nessacery amount of tests but he did want to make sure the lab hadnt screwed the bloods up. He also wasnt prepared to wait for me to get symptoms because he hates children suffering.)

No real difficulties as yet, not being able to eat anything from my school is a bit of a pain if i forget my luch (which thankfully i havent done.. yet). Also having people eating stuff infront of me which i have a craving for is not really that helpful.

Good luck, hope this helps.

[spkerens]

well, I would like to know basically what your symptoms are, how you found out you were a celiac, and basically the difficulties you have had with and as a celiac. ~Phil

Growing up I was extremely skinning and my parents just thought it was because of my high metabolism and that I was actively involved with sports. I also had a very terrible problem about breaking bones. By the time I was 14 I had had 8 broken bones including both my wrists, collarbone, various fingers, fractured skull. Then when I was 16 I broke my leg playing soccer. My parents were a little worried that I had broken so many bones.

I went and saw various doctors, but none had any idea. I had x-rays, bone density tests, and stool samples taken to try and figure how why I was so fragile. They did blood work and noticed there was a very high chance of having celiac disease. I personally had never heard of this disease and didn't know what it was. They confirmed it with a biopsy. They were a little taken back that I had never had any symptoms of a typical celiac patient. I ate wheat filled food although my childhood and never had so much as an upset stomach.

I am now 18 and been on a gluten free diet for the past 2 years. I am still fairly small only about 5'9 and weight about 130 pounds. Still pretty active when it comes to sport playing soccer for my high school and club team. Haven't suffered any broken bones since I was diagnosed with celiac. Now next year I am heading off for college and sticking to a gluten free diet is going to be extremely tough.

[taylor-]

Hey! so can I just say that just about all my papers from elementary school to now college have had something to do with celiac disease/gluten-free diet in some way..kind of sad..but it always gets a good grade

My story really isn't interesting at all, but i thought i would put my 2 cents in since its been a while since i've posted anything here. And i'm one of the ones that was diagnosed verrry early, so to give you a different perspective..

I was diagnosed at 18 months old through an endoscopy. As a baby I was fairly calm and didn't do much, a few months before my first birthday i started dropping weight really fast. I had a distended belly and very very skinny arms and legs. My parents pretty much stopped taking me out to eat because I would always make a scene with the vomiting and everything. I went to a series of doctors who tried all the "normal" test and decided to try taking me off dairy, that helped a little, but overall did not have much of an effect. I have my classic first birthday picture with cake all over my face, but i look miserable and severely malnourished. On the 5th doctor (my mom tells me that the 4 other doctors later told her they would have eventually come to the correct diagnosis, but she tells me that told them she she didn't have "eventually," her baby was dying.) it was decided to try to biopsy my small intestine to see how much damage there might be, and from there they diagnosed me. Oh, I should note that back then they didnt have the blood test and the stool test. I went off gluten for a year, and had a second biopsy done. By the time I was almost 3, I was very fat and healthy looking. I never had the 3rd biopsy but my doctor said the improvement was obvious enough for a complete diagnosis.

So don't remember gluten, which has its benefits and downfalls. I grew up learning what foods were OK and which ones were bad, and often times had to tell my teachers and friends in elementary school what was OK. I could spot the "bad foods" on an ingredients not long after i could read, and tell whether french fries were battered or fine by looking at them, haha. I definitely still missed not being apart of what everyone else was eating. The gluten free food market was relatively new and could only be ordered through a magazine, and was extremely expensive. Usually my lunch consisted of a sandwich made of rice cakes. I went to a meeting every once in a while with my mom, but the support group in my area kind of scared us both because it was all much older people who had several other problems because of a late diagnosis.

Skipping over a few years, middle school and high school i did not want to bring rice cakes to school for lunch, or have weird looking bread, so often times i wouldn't eat. some of my friends would make fun of my food or ask to try it and then tell me how gross it was, and this was really discouraging and just stopped me from eating with them. I also started cheating some, ordering things at a restaurant, having them be sent out wrong, and refusing to send them back because i didn't want to cause a seen with my friends. This is when the early diagnosis was a bad thing. I didn't know what it was like to be really sick, and my friends had never seen me sick before, so it was often hard convincing them, and myself, that i would get sick.

So i struggled with that during middle school and early on in high school, slowly more and more info came out and more gluten free products. Once I was getting ready to go off to college I decided to get an apartment so i could cook for myself..and now i can honestly say that i eat enough every day and that it is healthy and safe.

Wow, that was long..and i was sort of quick at the end..like i said its not that interesting..if you want more info on the "struggling" part just let me know and i could elaborate more..

[Fishy Guy]

Thanks guys! This will help a ton! Phil

[Fishy Guy]

I was pretty much asymptomatic, the only thing i had was anemia which could of been down to anything (all the females in my close family had suffered with it at some point and none of them have coeliac). I found out because a locum doctor checked me for anemia then wanted to know why i was aneamic and so she checked for coeliac. Needless to say it came back positive.. over 250 infact when the norm from that lab was below 10.

I was then referred to a peadiatrition and gasteroenternologist who did a biopsy fully expecting it to be positive ... and it showed: nada.. he had taken about 7 samples from as many different places as he could reach, he got 5 pathologits to look at them .. but no one could see any damage at all, i guess you could say that was a difficulty .

So he repeated the bloods which came back defiantly positive and a little confusing (i mean i was the only one in my country with bloods so high and then having a negative biopsy in the last 5 or so years and the only one he had treated like that in the last 10). After a few more checks he decided to scrap the biopsy and go with the bloods. (He wasnt prepared to do more than the nessacery amount of tests but he did want to make sure the lab hadnt screwed the bloods up. He also wasnt prepared to wait for me to get symptoms because he hates children suffering.)

No real difficulties as yet, not being able to eat anything from my school is a bit of a pain if i forget my luch (which thankfully i havent done.. yet). Also having people eating stuff infront of me which i have a craving for is not really that helpful.

Good luck, hope this helps.

I can definatly relate to your story nikki. I had about the same thing happen for 3 years befor I knew I had celiac. I started having symptoms around 4th grade, and then it grew into extream pain in the stomache, untill 6th grade, they told me I had celiac. and as for lunch, I don't mind, Ill pack a thermas from yesterdays steak and mashed potatoes whil everyone else has pizza. I can't complain.

~Phil

[IxMissxMysticxPizza]

in elementary school no one could figure out what was wrong with me, i was malnourised, super skinny(chicken legs), hair thin from falling out, i had pains and stomach acid but i still thought i was a normal child. i wasn't even on the charts for where i was supposed(in terms of growing) to be. i saw lots of doctors and tried lots of diets until finally my doctor decided to test me for celiac in 2005. it came up positive. a couple more tests and it was confirmed i had celiac disease. so i began staying my diet, being a little freak, and boom i was on the charts. growing for times i missed, im on tract now, no more stomach pain...i still look super young and still feel leftout but at least i know whats wrong with me.