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Would Love To Be Reassured That I'm Not The Only One Struggling!(new Here)

Miki-chan

By Miki-chan
in Meet Up Room

Recommended Posts

Miki-chan Newbie
Miki-chan
Posted

Um hi? I'm new here and would love to be able to talk about being Celiac and other health issues that my genetics blessed me with...heh heh.. thank you if you read all this, i've been dying to find somewhere where I can talk to other teens who are going through things such as me

I've gone through a LOT of diagnoses....and after a year and three thirds, I got a DECENT diagnosis... =.=

During July in 2008, thats when I started to get sick. I was going to run a local 4km race for teens when halfway during it, my knee began to intensely painful. I pulled out and days later, my whole body was in pain....i couldn't hold anything. my cousin has Rhuematrioid Arthiritis so we panicked quite a bit. all the blood works were negative and it was put aside by my rhuematologist as 'growing pains' or 'all in my head'.... the next rhuematologist thought it was reactive arthiritis and put me on some anti-inflammitory medicine which i can't remember at the moment. when i started to feel better, i started to get horrible stomach pains, unusual rashes i've never had before and intense pain to any vibrations. no one had any clue what it was. i went through some heavy physio and accupuncture during that time.

when it became 2009, we started to see an alternative G.P who got a gluten test done just out of curiosty - and guess what? it was off the charts. how suprising! he suspected it was celiac and had a biopsy done but there was no signs of damage to my gut so it was passed off as just a sensitivity. my bad(sorry about the language) rhuematologist wanted to get me off her case so just passed me along to a chronic pain team. they diagnosed it as chronic neural sensitization syndrome but they ignored the fact that I was sore ALL over and I was having joint pain and stiffness.... i tried a lot of meds for it but most of them gave me bad reactions(i've had allergies ever since i was a baby)

Only just recently I went to Australia to see a doctor who specializes in chronic illnesses under the age of 25. He was the only one who took on all the symtoms. So it turns out I have polymyalgia rheumatica, celiac(obviously), multiple sensitivities syndrome, insulin resistance, emotionally fragile(how is that a diagnosis?!) and some other ones which I can't be stuffed remembering... I was really hoping he would say I could go back onto gluten so when I heard I did have Celiac, I burst into tears and could not stop crying for the rest of the 2 hour appointment.

I thought I was only going to be gluten free temporarily but now...I can't get over the fact that I'm gluten free for the rest of my life...an

I only go to school three mornings a week...about 1 and a half days because I have so much muscle, joint and stomach pain. it's so hard to explain to my friends why I can't eat any of the food they offer or why I can't run around with them... i'll end up usually feeling really bad - I hate seeming troubled and people asking me if I'm ok. Well you know what? I'm not ok!! just shut up!! (...I can understand why I was diagnosed as emotionally fragile xD)

how do you guys deal with going out with friends? i'm really struggling finding somewhere to eat that serves gluten free food that's decent! most of the cafes usually just serve little slices of gluten free cake, which isn't the best option for me with my insulin resistance. its such a hassle having to ask waiters if things have any gluten or wheat in it

i just want the pain to go and to cope with being gluten-free so I can get along with life again.

Thanks for reading this btw xD i'm just glad you were bothered to listen to this pathetic story

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luvthelake21 Rookie
luvthelake21
Posted

Just wanted to say hello and welcome to the forum. Keep on the gluten-free diet and maybe you will start feeling better. :)

nikky Contributor
nikky
Posted

Miki -chan

first of all welcome to the community! :)

your not the first to struggle, and you wont be that last, so dont beat yourself up about it, its a big change to deal with and it effects us all in different ways. Sometimes it can be difficult for friends to understand not only what coeliac is in the first place, but also why it has to be taken so seriously. one of my first thoughts when i was told i might have celiac disease was how was i going to explain this to people. I had to take my friends to the side one-by-one and explain to tehm all seperatly. Some of them just needed the basics, i.e. no gluten or i get sick, others needed to be made aware of the seriousness by being told long term effects. Until i did that, my friends repeatedly said things like 'just one wont hurt', when clearly, it will. if your struggling to make them understand, you could show them this website, or go to www.celiacteens.com thats got a pretty good explanation too. My friends STILL dont really know what i can and cant eat and ive had celiac disease for 2 years now, but they are way better than before, so dont worry sweetie,your friends will get better.

Eating out is sometimes a bit of a problem, but usually its all about planning, if you know where your going then call the places in advnce and see if they have anything to offer you. On a few occasions ive had places make specific meals for me that werent originally on the menu once i (or my parents) have explained the situation.. but thats not garunteed. At first it real is a case of trial and error, once you know the places around you that you can eat at, it'll be like clockwork, and that goes for sticking to the diet too. The more you look the more you'll find that there are a wide range of replacement products on the market, and that range is getting bigger. As my GI once sadi to me... if they can make money out of you they will.. which means more manufacturers will 'cash in' giving us more choice.

if you need someone to talk to about all this, you can message me here, or email me / add my msn .. luckychik123@hotmail.co.uk

keep going, it WILL be ok

Miki-chan Newbie
Miki-chan
Posted
  • Author
Miki -chan

first of all welcome to the community! :)

your not the first to struggle, and you wont be that last, so dont beat yourself up about it, its a big change to deal with and it effects us all in different ways. Sometimes it can be difficult for friends to understand not only what coeliac is in the first place, but also why it has to be taken so seriously. one of my first thoughts when i was told i might have celiac disease was how was i going to explain this to people. I had to take my friends to the side one-by-one and explain to tehm all seperatly. Some of them just needed the basics, i.e. no gluten or i get sick, others needed to be made aware of the seriousness by being told long term effects. Until i did that, my friends repeatedly said things like 'just one wont hurt', when clearly, it will. if your struggling to make them understand, you could show them this website, or go to www.celiacteens.com thats got a pretty good explanation too. My friends STILL dont really know what i can and cant eat and ive had celiac disease for 2 years now, but they are way better than before, so dont worry sweetie,your friends will get better.

Eating out is sometimes a bit of a problem, but usually its all about planning, if you know where your going then call the places in advnce and see if they have anything to offer you. On a few occasions ive had places make specific meals for me that werent originally on the menu once i (or my parents) have explained the situation.. but thats not garunteed. At first it real is a case of trial and error, once you know the places around you that you can eat at, it'll be like clockwork, and that goes for sticking to the diet too. The more you look the more you'll find that there are a wide range of replacement products on the market, and that range is getting bigger. As my GI once sadi to me... if they can make money out of you they will.. which means more manufacturers will 'cash in' giving us more choice.

if you need someone to talk to about all this, you can message me here, or email me / add my msn .. luckychik123@hotmail.co.uk

keep going, it WILL be ok

thanks! your words made my day~ its nice to know that someone else can relate to me~ it will definately take time but like you said, i will get better - just a matter of aiming for it now :)

GFinDC Veteran
GFinDC
Posted

Hi Miki-chan,

I am a bit older than you but I hope you don't mind me chiming in. I am only half a century so not that big a difference right? :rolleyes: I hang around here and read quite a bit. One thing that might be interesting to you is that several people have reported their other autoimmune disease symptoms were reduced after following the gluten free diet a while. Some of the people reported less joint pain, better blood glucose levels, less muscle pain etc. So, I know you are aware of the risks of not following the diet, but I wanted to share that their are positive benefits to being strict about the diet also.

Some of us need to avoid other things besides gluten, like dairy or soy etc. I think dairy is the 2nd most common food for celiacs to avoid.

I am posting a link to another thread you might like to read. The post by Missys'mom has a link to Michelle's blog which is by a young woman doing the Paleo gluten-free/CF diet and how it is helping her diabetes symptoms.

https://www.celiac.com/gluten-free/index.ph...mp;#entry577842

This 2nd link is to a thread with a little info on Auckland gluten-free food.

https://www.celiac.com/gluten-free/index.php?showtopic=62796

Welcome to the forum and the gluten-free life! We are all learning things about being celiac here. I learn new stuff all the time and I have been doing this for 2 years now. It does get easier in time as you learn more about how to avoid gluten and how your body reacts to foods. Oh, check out the recipes / cooking section also, lots of good info there too.

Miki-chan Newbie
Miki-chan
Posted
  • Author
Hi Miki-chan,

I am a bit older than you but I hope you don't mind me chiming in. I am only half a century so not that big a difference right? :rolleyes: I hang around here and read quite a bit. One thing that might be interesting to you is that several people have reported their other autoimmune disease symptoms were reduced after following the gluten free diet a while. Some of the people reported less joint pain, better blood glucose levels, less muscle pain etc. So, I know you are aware of the risks of not following the diet, but I wanted to share that their are positive benefits to being strict about the diet also.

Some of us need to avoid other things besides gluten, like dairy or soy etc. I think dairy is the 2nd most common food for celiacs to avoid.

I am posting a link to another thread you might like to read. The post by Missys'mom has a link to Michelle's blog which is by a young woman doing the Paleo gluten-free/CF diet and how it is helping her diabetes symptoms.

https://www.celiac.com/gluten-free/index.ph...mp;#entry577842

This 2nd link is to a thread with a little info on Auckland gluten-free food.

https://www.celiac.com/gluten-free/index.php?showtopic=62796

Welcome to the forum and the gluten-free life! We are all learning things about being celiac here. I learn new stuff all the time and I have been doing this for 2 years now. It does get easier in time as you learn more about how to avoid gluten and how your body reacts to foods. Oh, check out the recipes / cooking section also, lots of good info there too.

Thanks for the advice! The link you gave me for gluten free food is very helpful - its pretty hard to find a decent gluten free bread or lunch here...

I'm feeling better about staying gluten-free for the rest of my life now...thanks very much~

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