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This Place Is Wonderful


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6 replies to this topic

#1 glen4cindy

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Posted 20 July 2004 - 05:11 PM

I just wanted to take a moment and say how much I really appreciate everyone's time in this forum. I would not have a clue how to live, how to cope, even recognize my problem if it were not for people like you. If you are reading this, then the "you" I am talking about is you. Look in the mirror if there is any confustion. :)

It has been wonderful to find this place. I was beginning to wonder if I was ill with some sort of horrible cancer that the doctors couldn't find, or some such other disasterous disease. My wife was to the point of forcing me to go to the Dr. because she was frustrated and worried at the same time with me being "sick" like 90% of the time. It got to the point that I was trying to find out some way to avoid food. If I didn't eat, I could not get sick from something I ate. The only problem with that solution is that I really don't want to die from starvation. At the same time, I didn't know what to eat because there was not rhyme nor reason to what would make me sick. It became so incredibly frustrating. I didn't want to go anywhere at all for the fear that I would be too far from a toilet. Sorry if that statement is too blunt, but, it is true.

Just finding this place has been a real Godsend. It is like, WOW! I know why I am sick!! I am not some mental case, or some hypocrondriac (sp?) or some kind of crazy knucklehead! I knew that SOMETHING was making me sick. I cannot even describe how frustrating it has been fighting with this THING that I never knew anything about. In the beginning of finding out just what was wrong with me, the Dr. never mentioned Celiac. I am not sure that it is Celiac, may be wheat gluten intolerance. I am going to order the tests from EnteroLab to find out for sure. It was really hard to convey to people around me how sick I was. Some I know thought I was just a baby. 'Get over it' is what I imagined they were saying. 'Get away from me, act like a MAN,' All of those things went thru my mind. I didn't want to go anywhere and do anything with the guys from Church or anything because I always had to worry about being sick, and running to the bathroom 50 million times an hour.

One final thing, I had it in my mind that Celiac was more of a woman's disease. I don't mean any putdown whatsoever by saying that, so please don't take it that way. I have suffered massive headaches my entire life. Some of my earliest memories from being 5, 6, 9, etc. are MASSIVE headaches that I now know are migraines. Most reasearch shows that more women suffer migraine headaches than men do. It is really a pleasure to see men here, from teenagers to how ever old they are. Because now I can see that this is not a womans ailment. You see all the TV commercials about Zelnorm, IBS with constipation, only the Zelnorm is only for women.

Thanks again for this forum. Sorry if I have droned on and on, it has just been great to find this place!

Glen
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#2 celiac3270

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Posted 20 July 2004 - 05:41 PM

hypocrondriac (sp?)

Hypochondriac.......close....just the "h"...I wouldn't have said anything, but I had that as a spelling word in fifth grade...only two years ago, or 2 and a half, so I still remember...lol. :P


Whenever I see those Zelnorm ads, I always think about celiac disease....since it's always misdiagnosed as IBS, etc. In addition, I don't take your comment about it seeming more prevalent in women offensively....based upon the migraine symptom, it would seem that way. Thank you for your thank yous :) . I concur...this is a terrific board........ :D :D

-celiac3270
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#3 Guest_jhmom_*

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Posted 20 July 2004 - 07:32 PM

Hi Glen! We are glad you found this place too. Scott has done a wonderful thing by creating this website and message board *clapping for Scott*!!!!

I love this board and do not think I would have made it this far without it. THe people here are wonderful, they share and support one another. I know for sure I would not have been dx as early as I was because my GI doc thought it was IBS too but I knew it was something more than that, at one point (after losing 40lbs in 2 motnhs) I thought it could be cancer or something, very scary stuff!!!

Anyway, we are glad you are here and receiving support and information! After all we are all in this together :D !!!
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#4 Guest_~wAvE WeT sAnD~_*

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Posted 21 July 2004 - 09:51 PM

Just finding this place has been a real Godsend.  It is like, WOW!  I know why I am sick!!  I am not some mental case, or some hypocrondriac (sp?) or some kind of crazy knucklehead!  I knew that SOMETHING was making me sick.  I cannot even describe how frustrating it has been fighting with this THING that I never knew anything about.  In the beginning of finding out just what was wrong with me, the Dr. never mentioned Celiac.



That is SO true...it's exactly what I went/am going through. All signs point to Celiac's for me as well, and most of the doctors I've seen never found it. If you haven't yet, see a Gastroenterologist. If you have, ask him to perform and IgG or any of the other Gluten tests.

So don't let anyone tell you to "be a man about it." You have been a man about it--any responsible adult has to take control of his/her own life and health--you've off to a good start.

If you've already had these tests, keeping fighting for answers...it's your life, and unlike medical bills, insurance, and all the idiotic s*** doctors pull that one has to put up with, life is PRICELESS.
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#5 Guest_Lindam_*

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Posted 22 July 2004 - 03:40 AM

:) I also agree with Glen... Thank goodness for this forum. I have shared so much information with my doctor which he is very greatful for.

Glen, I know exactly what you are talking about, can't go anywhere without knowing where a bathroom is, not wanting to eat anything for fear of getting sick. I do believe people were sick and tired or hearing how bad my stomach felt... until that first fateful day when I had a horrible reaction at work, then I think people started to think I wasn't being a baby, and just complaining all the time.

For everyone, Thank You, Thank You, Thank You. I have found so much useful, helpful and encouraging information here, I don't know what I would've done.

Linda :P :P :P
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#6 Canadian Karen

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Posted 24 July 2004 - 03:11 PM

Hi Glen,

I know exactly how you feel. I too feel blessed that I have found this site as I now know that there are others out there who are dealing with exactly what I am dealing with and I am not alone. I have read so many posts here that I could swear I was reading about my own life!!!! I have had flare ups that I swear I would not be alive six months from then, sure I was dying of cancer. I eventually live through them and now try to tell myself each time, "Okay Karen, we have gone through this before, this too will pass......" There are also so many people who's health mirrors my own here also, i.e. dealing with Celiac Disease, hypothyroidism, chronic anemia, fatigue, depression, just to name a few! The times when I feel I can't cope anymore (which for me is very difficult, I have four young children, including 3 yr old twins, that need my attention.....), I just have to remember the people here and the support that I receive here, even though I am a newbie, everyone makes you feel welcome here......

I am also learning so much here, it is so informative and helpful advice how to know where the gluten is hidden......

Best wishes,
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."
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Laughter is the shortest distance between two people.
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"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."
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#7 catfish

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Posted 25 July 2004 - 10:13 AM

You're definitely not the only "man" on this board! I had the IBS dx for so many years, I also had to "suck it up" and deal with it. My wife seemed to get so irritated when I was too sick to go somewhere, like I was intentionally ruining her fun by being ill. Never mind that I was not only also missing out on the fun myself, but also writhing in pain. People really have no sympathy at all, do they? Now when my wife gets the least bit sick she expects me to pour on the sympathy and understanding, but I tell you that's hard for me to do. I'm a pretty generous person, but even so, I just want to say, "Now you have a tiny taste of what I have put up with 24/7 for the last 20 years!" It's like the world shuts down when she gets ill, but when I'm sick it's just because I'm trying to mess up her fun. Now that I'm gluten-free, she "tries" to be supportive, but she still complains endlessly about how the gluten-free food tastes, how expensive it is, how I'm still not 100% better yet... <_< I guess it's human nature to not understand what we don't personally experience. Ah, well. Really she's not all bad, that's just my little rant.

I agree that it has been wonderful to find this forum, and I am very grateful for it. Whenever I have had to suffer an affliction of some sort, from Bell's Palsey to Celiac Sprue, it has been an online forum that I've looked for to find the answers that doctors couldn't give me. Rarely have I found one as active, friendly, and helpful as this one.
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