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srthomas21

Are There Really Only 60,000 Diagnosed People With Celiac In The Country?

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I just read this on my local Celiac disease support website and couldn't believe. According them there are only 1000 people diagnosed with Celiac in Utah and 60,000 in the country.

I thought it was being diagnosed a lot more.

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Considering the extent of the disease that seems an extraordinarily low figure. Of course, given the diagnostic ability of the doctors, that could be possible :o:(


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Many people choose to avoid an "official," biopsy diagnosis, for various reasons.

#1) The biopsy has a fairly high chance of a false negative, is invasive, and does carry some risk. More and more people are starting to look at it as unnecessary, especially as the sophisticated blood tests of today were not available 50 years ago, when the biopsy was declared the "gold standard" of diagnosis.

#2) Many people feel that the biopsy is often ordered, not because it is the only way to be sure, but because it earns more money than an office visit. (Having said this, I do want to point out that if intestinal symptoms continue even after a strict gluten/casein-free diet, then I personally do believe further investigation is warranted.)

3) An official diagnosis of celiac disease has been used by both health and life insurance companies as reason to deny coverage ("pre-existing condition"). Gene testing may carry the same risk of denial.

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http://www.celiaccentral.org/SiteData/docs...c%20disease.pdf

Yet, 97% of people with Celiac Disease, go undiagnosed, or misdiagnosed.

Until doctors become more informed about the prevalence of this disease and better diagnostic methods are established, it will remain a generally self-diagnosed disease.

An unwarranted biopsy should not be considered, but due to the fact that many, if not most people here have had extended histories of digestive issues, it should be considered. Currently the biopsy/endoscopy exam and the Serologic Blood Panel are the best options toward diagnosis. A positive dietary response is also supportive.

While Celiac Disease warrants a level of concern, other unchecked diseases could warrant a much greater concern. Celiac Disease is linked to intestinal lymphoma, if neglected. A biopsy should never be dismissed. And worries about a "pre-existing" condition, should never deter you from seeking a proper diagnoses to regain your health or perhaps save your life. ;)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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The number of diagnosed Celiacs seems to have risen, recently. Although we've been hearing, for years, that 97% of Celiacs are undiagnosed, the National Institute of Health is now saying it is 95%, This new percentage was also echoed in a NY Times article on Dec. 15, which is referenced in a thread in the Publicatons and Publicity forum. At least there's some progress happening, however slowly.

http://celiac.nih.gov/FAQ.aspx


Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

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I just read this on my local Celiac disease support website and couldn't believe. According them there are only 1000 people diagnosed with Celiac in Utah and 60,000 in the country.

I thought it was being diagnosed a lot more.

Hi ...

being an ex engineer - this number crunch may help you.

60,000 people would be about .02% of the US population (based on 320 million).

They say that 1 in 133 Americans are celiac, (even though I think it is more like 1% (Australia and UK))

If it is 1 in 133, then the total number or celiacs would be 2.4 Million people - most articles round it up to 3 million.

If only 5% WERE diagnosed - then 5% of 2.4 million would be 120,000.

I have read articles that suggest that the diagnosis rate may only be 2.5% which matches your original 60,000 figure. Amazingly Australia has nearly 20% diagnosed, but your media machine gives America a higher market growth rate.

One thing you should realise though is that America is blessed with entreprenuers / capitalists that see Gluten Free as a very lucrative niche. America now has the highest gluten free online demand of any country! The reason that diagnosis levels are so low is access to cheap healthcare, people's awareness of the symptoms (often taking ten years to diagnose) and medical doctors understanding celiac disease and be willing to test for it.

That said, gluten free online demand is booming in the USA. As 2009 was the highest growth year in five years. The best way to spread the word in your local community (IMHO) is to get your favourite eating places to extend their gluten-free options or you go elsewhere.

ALSO while celiac diagnosis is very low, friends and family of celiacs multiply their number and power considerably.

In Aust, while gene testing for DQ2 and DQ8 celiac genes gives you maybe 95% 'proof', biopsy is still the stongest method. If your give up gluten well before going for a biopsy, your test may be inconclusive. IN Australia, the celiac society will not accept you for membership unless your doctor writes this as a full diagnosis - hence some actual and practicing celiacs are not included in the stats.

Hope that helps.

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