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#1 McDougall

 
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Posted 05 December 2004 - 07:01 PM

I was wondering how long this board has been here? I feel like there is an epidemic in our society that is being ignored. I do get overdramatic at times so maybe it's just me whose life is forever changed (I know it's not JUST me I have talked to many others) but how epidemic is it? Is it the 134-1 numbers commonly seen here or is it just the rare poor bastard like me and you that the doctors and usa society ignore? Maybe and likely this has all been discussed before and I just need the proper link to the proper thread? I wonder how many people like me are out there that have no clue? Someone mentioned that celiac has become much more known about since '97? I would think the interent has helped alot of people like me, it is the way I figured it out., not the docters, media ect...
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#2 darlindeb25

 
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Posted 05 December 2004 - 08:12 PM

:( my dad is 71 and just diagnosed a month ago--he has had stomach probs for as long as i can remember--he has been very sick since the day he retired 3 yrs ago--he is 6' tall and weighed at least 250 and is now finally going back up and is now at 167--he was down to 150 and so very sick--almost constant diarrhea and the doctors had no clue--we asked to have him tested 2 yrs ago for celiacs and they didnt do it--he has been gluten-free now for over 3 weeks and is feeling better--i do believe there are a lot of us out there not yet diagnosed--i also believe that many people are gluten intolerant because we have so hyper breed our crops that we cant handle them anymore--celiacs is hereitary, but some of the intoerances is enviromental---deb
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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 FreyaUSA

 
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Posted 06 December 2004 - 03:53 PM

I often wonder this, too. Being on these boards makes me think there are more people like me (and my kids) than maybe there are. Then, this last weekend I went to a holiday party where there were only about 100 people. Guess what? There were 4 people (including me) with celiac disease. We were all stunned. Random sample and it was 1 in 25. :huh:
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#4 celiac3270

 
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Posted 06 December 2004 - 05:50 PM

This specific board has been here since Dec. 31, 2003. There was, however, another board that was here before then. Because it was more cumbersome to navigate, a new board was created. The board still exists and you can read old topics...the old homepage is here: http://celiac.master...B&cmd=showlogin.
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#5 debmidge

 
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Posted 10 December 2004 - 02:41 AM

I agree, it seems like society is ignoring Celiac. Other diseases are plastered in the media all over the place, everyday, celiac is only sometimes mentioned. Let's think about this, is the number of people with confirmed celiac about the same number of people in this country with AIDS? There might be more people with celiac than with AIDS or HIV.

Also, I don't know about you all, but I feel that society doesn't want to deal with people who have celiac or wheat allergies. Food manufacturers had to be forced by law to show if they have wheat on their labels - what does that tell you? Sometimes I feel that society feels that if they ignore celiac, maybe it'll just go away and leave them alone. I feel that unless someone famous comes down with celiac, there won't be anymore focus in the media than there is right now.

Celiac has no prescriptions which the pharmaceutical companies can make money on, so they ignore the disease. There's no push or campaign other than what the celiac disease associations do. No one writes to the Pres of US to tell him that more funding needs to go into celiac disease like they do for AIDS/HIV.

I work with a man who is celiac, who is constantly eating wheat bread and wheat bakery goods (I know this because he's even brought regular rolls in from the bakery on numerous occasions himself and offered it to us - he also eats the birthday cakes we bring in. I do holler at him, and he just grins and says he knows.) My husband is a severe celiac. People at work look at me strangely as I tell them how sick my husband is, and how he has lost a lot of weight and he's weak; then they look at my celiac co-worker and say to me "Well, so and so has it, and he looks good -- look he eats wheat products and it doesn't affect him?" So now to them they think I am making this up and my husband is pretending to be sick so as not to work. My co-worker's naughtiness negates my testimony about my husband's celiac. It's hard to live that down. So what are these people learning about celiac then? I try to tell them that my co worker is errant and that he's only hurting himself. They look at me like I am crazy. They have no clue about celiac and what the symptoms are.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#6 FreyaUSA

 
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Posted 10 December 2004 - 06:09 AM

I feel for you, Deb! Someday, however, your coworker will suddenly be hit big time, be it like your husband or cancer or brain damage. If he has all the damage to his intestines, it really is just a matter of time. As irritating as he is, you should also pity him. (And pity can be so much more annoying to another person than irritation! ^_^ )

With four of us positive here in my house, I see all the different levels of reactions. My eldest has the worst reactions of us all, meanwhile his good friend, also positive (with a much higher positive blood workup than my son) has almost no reaction when he eats something. They are both being far more careful than your coworker (there must be a maturity/intelligence thing going on here that has nothing to do with age :P) Lol! I guess I get angry too when people are just stupid. (You should play up the long term health effects on celiacs who eat gluten, get your other coworkers to realize the one in your office isn't the brightest bulb in the office.)

Oops, sorry, I'm in a mood...
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#7 McDougall

 
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Posted 10 December 2004 - 07:07 AM

I'm having many of the same feeling. Like there is no profit in helping celiacs so we must find out on our own, left to fend for ourselves by the medical community. There is little press on the issue, why? I can't figure that out, I would think and editor somewhere would have this and make a stink. And because the doctors ignore the problem everyone else (my family, friends ect...) don't buy really seem to buy it. I tell people what is wrong with me and how much better I fell after just 9 days gluten-free and they just don't seem to buy it, it's embarrasing almost. I wonder if this is another problem, people like me stop trying to tell others because of the reactions they get? I'd really like to understand all the causes for me finding out on my own what 5 doctors over 6 years could not figure out, it is insane, I'm not very bright. I figured it out. 1 of those 5 doc's coudn't have just thought "well, try not to eat gluten for a week" How hard is that? I had near every symptom and did tell them. My goal is to find 3 people who are still suffering from celiac and let them know what's up.
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#8 darlindeb25

 
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Posted 10 December 2004 - 08:16 AM

;) that's a wonderful goal mcdougall-- :) wonderful, just remember even when trying to help some people they will ignore you :( --i worked with a girl--her mom has been diagnosed with fibromyalgia, i told her to tell her mom about celiacs and to ask for a blood test at least to see what comes up--get this <_< --her mom agreed that maybe she is celiac, but she would rather deal with the pain then to give up her food----sad huh-- :rolleyes: my own brother suffers migraines and stomach probs--my sis and i are both celiacs, but he refuses to listen to reason--he went as far as to say he was making us barley soup and wanted us to eat it so he could prove we are wrong :angry: never gonna happen bro--we did finally get our dad to be tested and now he has been gluten-free for 5 weeks :D and doing much better--but do try to meet that goal ;) maybe you can convince someone--deb
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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!

#9 debmidge

 
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Posted 11 December 2004 - 12:37 PM

As a P.S. I have to add that my celiac co worker is 78 years old. I guess he figures what does he have to lose at this age. He came down with celiac disease when he was about 72. WHen I holler at him, he looks at me like he did something wrong. You really can't stay mad at him, but it does make my husband look like he's nuts - that celiac disease really can't be that bad if so and so is eating wheat...
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#10 stef_the_kicking_cuty

 
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Posted 11 December 2004 - 02:11 PM

I feel that unless someone famous comes down with celiac, there won't be anymore  focus in the media than there is right now.

I work with a man who is celiac, who is constantly eating wheat  bread and wheat bakery goods (I know this because he's even brought regular  rolls in from the bakery on numerous occasions himself and offered it to us  - he also eats the birthday cakes we bring in.  I do holler at him, and he just grins and says he knows.)    My husband is a severe celiac.  People at work look at me strangely as I tell them how sick my husband is, and how he has lost a lot of weight and he's weak;  then they look at my celiac co-worker and say to me  "Well, so and so has it, and he looks good --  look he eats wheat products and it doesn't affect him?"  So now to them they think I am making  this up and my husband is pretending to be sick so as not to work.    My co-worker's naughtiness negates my testimony about my husband's celiac.  It's hard to live that down.  So what are these people learning about celiac then?  I try to tell them that my co worker is errant and that he's only hurting himself.  They look at me like I am crazy.  They have no clue about celiac and what the symptoms are.

Gosh, i hate people like that :angry: . They make the whole thing look ridicoulesly (spell?) easy <_< . Well... it's not. When i hear something like that, that makes me want to slap and shake those people that it's not even funny anymore :ph34r: . I mean, helloooo!!! Wake uuuhuup!!! If they want to suffer from it, then they should just eat their wheat and shut the f* up. Nobody has to know that they are celiac.... Just sh.... Understand what I mean? But noooo, those people have to ruin the hard work we've been doing in getting other people to understand celiac in a split second. Sorry for my harsh words here, but i get so mad, when i hear things like that.

And while speaking about famous people with celiac. OK, this guy wasn't actually famous, I even forgot his name... lol :lol: . But well, he toured with Kid Rock and died i think during they toured. At least that is what i heard. He had to take over 50 medications every day. Some people say, he died from drugs (i mean the forbidden drugs like pot, you know what i mean?). Well, that's not right, he was celiac. They never made a big deal out of it. Even if that guy wasn't famous, the fact that he toured with a famous guy would have brought us some advertising. Oh well :( I guess, it shouldn't be...

Stef
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Stef

Next goals:
Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#11 debmidge

 
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Posted 12 December 2004 - 03:09 AM

Now if that guy from "Kid Rock" survived and came out with his "celiac" we'd have something there. We'll never really know what he died from, but we all know that untreated celiac could be a factor (by untreated I mean not following diet 100% for many years)

But even still, I'd like to see the numbers for # of confirmed celiacs in USA vs. # of AIDS/HIV in USA and see which is higher. With all due respect to those with AIDS/HIV, why can't celiac get that kind of media coverage?

Sarcasm & tongue in cheek & a dose of sick humor perhaps... Maybe we should start a rumor that you can get celiac by sitting on a toilet seat....then maybe there'd be a rush to get a cure or a medication for it.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#12 darlindeb25

 
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Posted 12 December 2004 - 04:49 AM

:lol: very good deb----if they only knew how much time some of us spent on a toilet seat, they would be afraid to go potty :P deb
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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!

#13 tarnalberry

 
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Posted 12 December 2004 - 11:56 AM

The 1 in 133 number is how many people probably have some variety of elevated antibodies to gluten. That's about 10x more than have been actually diagnosed - so it's not surprising, sometimes, to feel alone in this one. But boards like this remind us that we're not alone. :-)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
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