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My Celiac Story


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8 replies to this topic

#1 num1habsfan

 
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Posted 24 October 2004 - 09:16 PM

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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...Flames vs. Panthers, and Lifehouse, were best experiences OF MY LIFE!!...
...26 years old...
...Look in my forum profile for ways to read my public sports articles...

R.I.P. Uncle Gus (Sept. 21, 1971 - Oct. 2, 2004) ... R.I.P. Baba (Oct. 12, 1911 - Feb. 28, 2006) ... R.I.P. Uncle Lawrence (Aug. 7, 1943 - Jan. 4, 2009)


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#2 darlindeb25

 
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Posted 25 October 2004 - 01:05 AM

:( 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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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#3 lovegrov

 
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Posted 25 October 2004 - 07:10 AM

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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#4 MySuicidalTurtle

 
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Posted 25 October 2004 - 02:28 PM

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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#5 num1habsfan

 
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Posted 25 October 2004 - 02:38 PM

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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...Flames vs. Panthers, and Lifehouse, were best experiences OF MY LIFE!!...
...26 years old...
...Look in my forum profile for ways to read my public sports articles...

R.I.P. Uncle Gus (Sept. 21, 1971 - Oct. 2, 2004) ... R.I.P. Baba (Oct. 12, 1911 - Feb. 28, 2006) ... R.I.P. Uncle Lawrence (Aug. 7, 1943 - Jan. 4, 2009)


#6 Canadian Karen

 
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Posted 25 October 2004 - 06:48 PM

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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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#7 Canadian Karen

 
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Posted 25 October 2004 - 06:49 PM

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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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#8 lovegrov

 
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Posted 26 October 2004 - 06:00 AM

"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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#9 Mballerina

 
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Posted 07 November 2004 - 04:55 PM

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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Magdalena (1st celiac disease, than the world)




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