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dally099

Staggering Statistic-why?seems Simple To Me

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so im reading on the internet on another celiac website (american celiac sprue website) and the stats were that 1 in 133 Amercians have celiac and yet only 3% are diagnosed. thats crazy!!!! are docs so in the dark that this is the best we can do? now i seem to be one of those people who have negative blood results, and my enterolab results were right on the border, but i most deffinatly have the genes (DQ3,8 and DQ1,5) i refuse to go for the biopsy as this means going back on gluten and frankly i have been poked by enough docs in my life time. but it seems so simple that you can go in for genetic testing. i mean not everyone with the genes is showing symptoms but it would certainly give you a heads up in what to look out for. am i the only one who figures this? just thought i would ask,


Nadine

mom of 4 great kids - 2 diagnosed with autism and 2 typical kids (thank goodness)

all this started after my hysterectomy in March of 2006

G.F. since Feb 2007

Soy free since April 2007

Blood work was negatvie (after 2 weeks of being on the gluten-free diet)

entrolab results:

Antigliadin 9 (normal <10)

HLA-DQB1 Allele 1 - 0302

HLA-DQB2 Allele 2 - 0502

HLA-DQ 3,1 (subtype 8,5)

carrying one celiac gene and one gluten intolerant gene

nurse at entrolab figures i caught this early and dont eat gluten anymore

life is like a box of chocolates;sometimes you get stuck with the yukky coconut fillet one

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I know. It's mind-boggling isn't it?

Up until about 10 years ago they had no idea that it was that common. They used to think that it was a rare childhood condition that kids grew out of. In medical school, they were told that they probably would only see one case of it in their entire careers, if that.

So even as information has gotten into medical journals that should wake even caring doctors up, I think that oftentimes doctors will just scan the headlines (like all of us do with magazines) and just wouldn't bother to read an article about celiac. After all, reading something about a disease that is so rare that they may never see a case of it, may not be worth their time considering all the articles there are to read.

Then there are the doctors who really just have a superiority complex and don't give a rat's booty about anyone but themselves and their ego. Heaven forbid they could be wrong about something. <_<

When I went to the doctor, I brought a printout of the celiac page from the National Institutes of Health. (It's part of the federal government.) http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

It helps because it shows that this is serious, it's real and it's known about. They have the 1 in 133 statistic in there as well.

The NIH also launched a Celiac Awareness Campaign, initially not to bring more awareness to the public, but to bring awareness to DOCTORS. Because what good would it be to have a public service announcement to tell people to go see their doctors to be tested for celiac, if the doctor has no clue what's going on? http://www.celiac.nih.gov/

When I joined this board less than two years ago it was very rare for people to come here post-diagnosis. Most people just happened across celiac while they were trying to figure things out for themselves. Now, it's really encouraging to see people come here with a diagnosis in hand because it shows how many doctors are really paying attention to the possibility of celiac for so many people.

I'm guessing that the celiac organizations are working to inform and educate doctors first, then hopefully they will create a public awareness campaign.

So it is slowly getting better. But yea, that 1 in 133 statistic with only 3% knowing is really shocking. Now that I think about it, they used to say only 2% know. We must be making progress. :D

You never thought you'd be a trail-blazer did you? ;)

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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so im reading on the internet on another celiac website (american celiac sprue website) and the stats were that 1 in 133 Amercians have celiac and yet only 3% are diagnosed. thats crazy!!!! are docs so in the dark that this is the best we can do? now i seem to be one of those people who have negative blood results, and my enterolab results were right on the border, but i most deffinatly have the genes (DQ3,8 and DQ1,5) i refuse to go for the biopsy as this means going back on gluten and frankly i have been poked by enough docs in my life time. but it seems so simple that you can go in for genetic testing. i mean not everyone with the genes is showing symptoms but it would certainly give you a heads up in what to look out for. am i the only one who figures this? just thought i would ask,

Yea but gene testing is expensive, and if we know that we have the gene then when all the symptoms show up it wouldn't take 10 to 15 years of expensive tests and all the billions of dollars to be made from us would be gone. Our health care system would have serious money deficits and just think of all the rows of tummy meds and such that would not be sold on a daily basis. Immodium would become a relic of a bygone age like laudnum. And think of the effects of the psychology business, all the folks who wouldn't be depressed or anxious and need a sleeping pill or antidepressant. Dermatologists would lose a lot when teens cystic acne disappeared and many cases of excema and contact dermatitis didn't occur. Infertility clinics would also feel the pinch along with rheumatalogists and neurologists. It just doesn't make finacially sound sense to diagnose us till we are almost dead.

I know the above is a total exageration by a long misdiagnosed and rather bitter old woman, but when you get right down to it in our pill popping, instant relief society celiac will be the last thing they look for........Until they make a pill with lots of nasty side effects anyway.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Yea but gene testing is expensive, and if we know that we have the gene then when all the symptoms show up it wouldn't take 10 to 15 years of expensive tests and all the billions of dollars to be made from us would be gone. Our health care system would have serious money deficits and just think of all the rows of tummy meds and such that would not be sold on a daily basis. Immodium would become a relic of a bygone age like laudnum. And think of the effects of the psychology business, all the folks who wouldn't be depressed or anxious and need a sleeping pill or antidepressant. Dermatologists would lose a lot when teens cystic acne disappeared and many cases of excema and contact dermatitis didn't occur. Infertility clinics would also feel the pinch along with rheumatalogists and neurologists. It just doesn't make finacially sound sense to diagnose us till we are almost dead.

Great post, Ravenwood :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I wouldn't say gene testing - since nearly a third of people may carry the gene, and it doesn't tell you if you have celiac disease. But screening with the basic five celiac blood tests would be good.


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

Bellevue, WA

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I wouldn't say gene testing - since nearly a third of people may carry the gene, and it doesn't tell you if you have celiac disease. But screening with the basic five celiac blood tests would be good.

You are right,Tiffany......NOT finding the gene just rules it out.....or at least for now, as there is some research going for non DQ2/DQ8 . Getting the 5 tests is where you start. Of course ,it takes an enlightened medical establishment and an educated public to pull this off.

Raven, wish there was something I could say to make some of your hurt go away. You certainly have reason to be bitter,,,,,,but I'm convinced it just eats away at us more. It is hard to be positive some days.....I'm struggling with it now.......but having this terrific site to just be ourselves and vent and be happy and just be.........well, THANKS,SCOTT !!!


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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Raven, wish there was something I could say to make some of your hurt go away. You certainly have reason to be bitter,,,,,,but I'm convinced it just eats away at us more. It is hard to be positive some days.....I'm struggling with it now.......but having this terrific site to just be ourselves and vent and be happy and just be.........well, THANKS,SCOTT !!!

I don't know what I would do without this site, it helps a great deal just to know your not alone. Last week was hard with my son home, he is trying to live with gluten eaters and has been suffering now for 3 months with 9 more to go before the lease is over. I think seeing what undiagnosed celiac did to him gets to me even more than what it did to me. It is so hard to watch this young man suffer and not be able to do anything. I also have been hiding my possible 'complication' from him so he won't worry needlessly. Like us all I have good weeks and bad, the last couple have been pretty bad. Having this board and the other ones that are not celiac related (or at least don't know they are) helps a great deal. Some times I think I went through everything I did because having had the worst case senerio diagnosis wise puts me in a position to be able to help others who are going through the same thing. For me that helps mentally more than anything else. That and my garden.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I have troubles counting the amount of doctors, who when asked about some of my symptoms and if they are related to Celiac, just scoffed at me and told me 'no'. Frankly I don't think many doctors have a clue about celiac's effects and symptoms.

For instance I went to 5 different skin doctors for a skin condition and asked each one of them if celiac disease was the cause. Every one of them responded with an afffirmative 'no'. After countless drugs I eventually gave up. Later I finally quit eating wheat for a few months and the skin conditions went away.

I have countless other stories that leave me rather puzzled about a few in the medical community.

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I know my local doctors are idiots, but am used to that as I have lived in small towns all my life.....

I think back to the one who said "you have migraine's because when you were 16 you fought with your mother and you dont go to church on sunday" granted I did fight with my mother at 16, who didn't? And at the time I worked sunday mornings, so no I wasn't going to church but what did that have to do with my headaches!?!?!?!?!?!

The scary part is, he still practices!


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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I know my local doctors are idiots, but am used to that as I have lived in small towns all my life.....

I think back to the one who said "you have migraine's because when you were 16 you fought with your mother and you dont go to church on sunday" granted I did fight with my mother at 16, who didn't? And at the time I worked sunday mornings, so no I wasn't going to church but what did that have to do with my headaches!?!?!?!?!?!

The scary part is, he still practices!

Sigh...

I'm at a loss for words.

:blink:

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Yea but gene testing is expensive, and if we know that we have the gene then when all the symptoms show up it wouldn't take 10 to 15 years of expensive tests and all the billions of dollars to be made from us would be gone. Our health care system would have serious money deficits and just think of all the rows of tummy meds and such that would not be sold on a daily basis. Immodium would become a relic of a bygone age like laudnum. And think of the effects of the psychology business, all the folks who wouldn't be depressed or anxious and need a sleeping pill or antidepressant. Dermatologists would lose a lot when teens cystic acne disappeared and many cases of excema and contact dermatitis didn't occur. Infertility clinics would also feel the pinch along with rheumatalogists and neurologists. It just doesn't make finacially sound sense to diagnose us till we are almost dead.

I know the above is a total exageration by a long misdiagnosed and rather bitter old woman, but when you get right down to it in our pill popping, instant relief society celiac will be the last thing they look for........Until they make a pill with lots of nasty side effects anyway.

When you think of all the pharmaceutical dollars that wouldn't be spent if people knew they had Celiac, it kind of explains the lack of action. Most medical research is funded by drug companies hoping to find a cure they can sell. Maybe I'm cynical but I don't expect to see national awareness until they either have a pill to sell us or enough Celiacs spread enough awareness that people start making their docs test them. Personally speaking, I haven't had to take Prevacid since I found out I have Celiac.


Karen B.

diagnosed with Celiac Nov. 2003

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I think back to the one who said "you have migraine's because when you were 16 you fought with your mother and you dont go to church on sunday"

:lol::lol:

...that must be why I get them on occasion!!!

:lol::lol:


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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I agree that most medical research is done by those with the money to do it...pharmaceutical industry...and most medical research is thus done with the ultimate idea of managing conditions with more new, advanced high-class drugs. Most textbooks in medical schools are published through the pharmaceutical industry, and even the "Bible" of diagnostics, the Merck Manual, is of course, written through MERCK!

I've also read that over the past four or five decades, we've eaten more and more gluten, mainly as wheat, in that snack foods and junk foods have become ubiquitous. That might make sense: people used to have regular meals ONLY...eggs bacon and biscuits/ soup beans and cornbread / pork chops and mashed potatoes, with maybe a piece of homemade pie once or twice a week. Over the years, more wheat-based, packaged snack foods have become a regular part of in-between meals, sandwiches form the basis of many meals, etc...it could be that gluten toxic overload has hit the Western, industrialized, fast-paced, snack-eating nations, and diagnosing the REASON for all of the current chronic conditions (maybe ultimately due to gluten ingestion...who knows?) is stalled because of everything being directed by the pharmaceutical industry.

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my husband grew up on a farm and he has said that its amazing to see all the health conditions arising due to food. in the "good old days" people ate out of their gardens and got meat from the local butcher fresh. ate way less canned goods, baked their own breads, and treats rarely ate in resteraunts and it seems to me that while they still had some health issues certainly not like we are having today. some thing to be said in favor of the "good old days"


Nadine

mom of 4 great kids - 2 diagnosed with autism and 2 typical kids (thank goodness)

all this started after my hysterectomy in March of 2006

G.F. since Feb 2007

Soy free since April 2007

Blood work was negatvie (after 2 weeks of being on the gluten-free diet)

entrolab results:

Antigliadin 9 (normal <10)

HLA-DQB1 Allele 1 - 0302

HLA-DQB2 Allele 2 - 0502

HLA-DQ 3,1 (subtype 8,5)

carrying one celiac gene and one gluten intolerant gene

nurse at entrolab figures i caught this early and dont eat gluten anymore

life is like a box of chocolates;sometimes you get stuck with the yukky coconut fillet one

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And think how people didnt have as many allergies as we have now. I dont remember people being allergic to stuff when i was little. Now everyone has allergies either of food, dust, stuff in the air and what not. It is ridicoulos.

There are days im glad i live in this day and age, but i think life would have been better on little house of the praire. But I would miss being a part of this group lol

paula


gluten, casein and soy free

on low carb/low sugar diet

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