Celiac Social Awareness

Celiac is an inherited autoimmune disease. 
It affects 1% of the global population.

In the U.S. celiac is 97-99% undiagnosed, which means that almost 3 million people have celiac and do not know it. 

These undiagnosed people often learn to ignore "minor" symptoms, accept their symptoms as "normal", or are told they have other conditions - which often result in expensive treatments or serious consequences. Some have tried to figure out health problems for decades. 

Undiagnosed celiac can result in debilitating chronic conditions and fatal illnesses.
The cost for undiagnosed celiac could easily be tens of thousands of dollars per person.

Celiac Disease fits the criteria for universal testing or screening, according to World Heath Organization (WHO) standards. 
It affects every global region, families, villages, generations. 
Its broad-scale identification would save many lives and benefit society.   
It has a known effective treatment.

Undetected celiac is very expensive. The earlier in life celiac is detected, the more money and health resources are saved, especially because the likelihood of developing other autoimmune disease.
It is cost-effective for every community to do so. 

Celiac is sometimes diagnosed in the process of cancer treatment, aftercare of childbirth tragedy, during the onset of diabetes or or when other conditions or disease caused by celiac are found, such as TB and infections, joint deterioration or osteoporosis.

Question: Why do you think celiac screening has not been 
established as standard medical practice, and smart health policy?  

Why is patient advocacy so important? 
It is vitally important to share information to alert doctors 
and patients alike about celiac, celiac symptoms and need for testing!
Doctors in the U.S. are averaging over 10 years to diagnose celiac, 
once a patient seeks help for specific symptoms. 
This is a serious, dangerous failure and simply not acceptable that testing is not done, or done when people are irreversibly harmed by failure to diagnose.

 

Here are some patients' ideas of what has been going on:
Failure to know about celiac.
Failure to ask the right diagnostic questions. 
Failure to recognize symptoms. 
Poor attention paid to symptoms and medical history clues. 

Wrong or premature conclusion.
Misdiagnosis of other conditions. 
Hasty prescription of pharmaceuticals to fix symptoms.
(Diagnosis pattern does not fit any trendy pharmaceutical profile.)

Let's Advocate!
AMA Letter: Proper follow-up care for celiac is rare. Well-informed doctors are hard to find. To sign a letter to the AMA about education for this: <Letter>

Political representatives Letter:

Local Medical Office/ School Letter: 
Let us know if you would like a celiac information package & complimentary 
Gluten-free Samples gift basket sent to an office in your local community: <Info Pkg> 

Celiac Expertise
In the NY area:
Dr. Peter Green, Columbia University Celiac Disease Center

List of national celiac organizations 

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