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My Celiac Story
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9 posts in this topic

I hope this is the right forum to post this in, but I thought I would join and I'd like to share my Celiac story..

Celiac, or not Celiac. that is my question. and it is a question that will never be clearly answered. It IS depressing to know the only proof I have of having celiac disease is my own physical diagnosis...simply a trial of seeing what symptoms I suffer from actually match up to those of celiac disease..

I never will forget the day I became ill, or at least noticably ill. I remember about 4 years ago going back to school after lunch with a stomach ache frequently, always just assuming I had either ate too much or too quickly..

Last New Years day I had half a styrofoam glass of Clamato juice because I was thirsty and everything else was put away on the way home. I know that being allergic to tomatoes always caused me to have cramps that would go away in a day. But this time they didnt..

After 5 days of sever pain I went to the doctor. Between the day I got ill and mid February 2003(When I started the diet) I went through countless bloodtests, an ultrasound, and a barium xray. Everything came back negative. I was in the doctors office at least twice a month last year, so by the end of the year they quit asking me who was calling. Because SK has the longest waiting lists, I never had my Endoscopy til March 9th and my Colonoscopy May 26th...2004 <_< ...Because of the length of time on the gluten-free diet both came back negative. My family doctor suggested this July, when I received my colonoscopy results, to join the main association. And also said the only way to actually prove having celiac disease is to go off the diet for at least a year and retake the tests...I refuse..

Unless you are in my situation, I believe it is impossible to know what I'm going through...

~Being 20 years old

~Losing 20 lbs in the first month of being sick

~Starving or suffering at all family gatherings because of VERY little support..I've actually begun to skip out on events(only to be yelled at) or taking my own food(only to be glared at)

~Suffering from the majority of symptoms even when sticking to diet

~The extreme difficulty of going out with friends

~Spending an average $100 a month just to feed myself, when I'd rather be saving up the money so I could go to Uni.

~Nobody understanding what celiac disease is even after I explain

~Going from a size 12 waist to the size 5 I am at now, and being annoying at MANY people telling me how pale and tiny I am. And trust me, for a 5' 6 1/2" tall person, size 5 IS tiny.

So now you know my Celiac story. I am sure I am not the only one going through something like this, but I can tell you this is not how I ever imagined spending my life at my age...

~lisa~

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:( i feel for you lisa and it does sound like celiacs--i was never dr. diagnosed either, i was always told it was IBS and eventually decided it was in my head, that i must be crazy or something--if you have been gluten free for this long and still feeling ill, then i think you are getting gluten somewhere that you have discovered yet or maybe there is another allergy showing its ugly head too--many celiacs have more then one allergen, many have many--keep your chin up--deb :rolleyes:
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I'm sorry to hear you're getting no support from your family. I've never understood this, but I've always gotten nearly complete support.

If you're absolutely sure you've eliminated all sources of gluten and you're still having symptoms, then something else is going on as well. Two things that come to mind are other food intolerances (dairy, corn) or the possibility of bacterial overgrowth. You can usually take care of the second simply by taking probiotics.

Finally, if you have the facilities to cook for yourself this way of eating does not have to be expensive. I spend less now because I don't eat out as much. But I also don't buy those expensive gluten-free specialty foods. I bascially cook with raw meats and fresh fruits and vegetables (not that I don't use any canned or processed goods -- I do).

richard

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I think you'll find a lot of people who are in or have gone through the same exact situation you are now in.

Sorry to hear that your life isn't the way you want it. I know I didn't expect to be 19 and so different form those around me. But after 2 years I have found that I can do a lot of things that my peers do when I am not sick. It took me awhile to fully be symptom free but once youre there everything is so much better.

I get very depressed over my Celiacs often and it is such a pain and the copst and everything you listed. In the end I know that this life is better than a life filled with wheat and I better try to find the postive. The food is way too expensive but some of it does taste good. Ha.

Anyways, I hope this forum offers you a lot of help AND support!

Kristina

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Thanks guys, I have a feeling there will be a lot more support here than I will find out there in person.

And what I meant by still having all the symptoms even when I stick to the diet, I meant that I dont feel the pain from eating gluten, but I suffer from pretty much everything else. Its a real pain and I know I get really depressed too sometimes..

At least I have all of you :)

~lisa~

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Hi Lisa,

Welcome to the forum and you will receive much support from us, as I have since I have joined.... It is incredibly reassuring just having someone who can empathize with your situation, especially considering the fact that you are lacking the support of your family, which never ceases to amaze me.....

Many of us are still suffering symptoms of Celiac even though a gluten free diet is being followed. That's what is so helpful, not only having other people in your situation so you don't feel so alone, but also, there are "gluten sleuthers" here who can help you pick out hidden sources of gluten (which there always are).

Have a great day!

Karen

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Oh, and I forgot to mention,

I am the Number One Leafs Fan!!!!! Go Leafs Go!! (That is when they get around to playing again!!!!)

Karen

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"I am the Number One Leafs Fan!!!!! Go Leafs Go!! (That is when they get around to playing again!!!!)"

IF they get around to playing again. There's some speculation that this strike could kill off the NHL.

richard

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Hi I am 20 too and I know how you feel. I totally know. I went to school in NYC and had to come back, I spent $1000 USD on food alone in one month. Oh man if you wanna talk, I have a similar experience with the medicined aspect. I am extremely reactive to gluten and can't get a diagnosis (loove canada) and therefore can't get better. My parents friend is a doctor and he says it might be in the middle of the small bowel and only the camera pill can find the damage. Mybe that is why i have constipation and not diarrhea.

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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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