Patient Advocacy: It's YOUR health care!

Celiac meets the World Health Organization criteria for universal testing, which has yet to be done, and yet is extremely under-diagnosed. It occurs in 1% of the global population. In the US, only 3% (90,000) are diagnosed - and 97% (2,910,000) have NOT been diagnosed.  

These statistics are significant. For every 3 diagnosed, 100 do not know!

Doctors often miss clear symptoms, and diagnosis takes over 10 years on average, once an adult seeks medical help. Some take many decades. Most doctors do not know how to treat celiac, except for mention of avoiding gluten. Unfortunately, for patients, this is very dangerous and very expensive. 

Some patients experience life-threatening or painful chronic and other preventable complications of celiac without ever knowing that a gluten-free diet is the simple preventative solution. 
As patient advocates, we need to help doctors to overcome the obstacles and find celiac.

Patient Advocacy - Things you can do!
To be a good patient advocate, ask questions, check sources and keep an open mind.

(1) Keep your own health record. Note visit dates and tests. Note changes and whenever something unusual happens.

(2) Get reports in writing: Always get a copy of each diagnosis and test results. Note any verbal advice. Do not be put off.

(3) Ask questions, expect straight answers. When you do not understand, say so. When you disagree or have concerns, keep notes in your record, to remember important health clues.  

(4) Be informed. The Internet is NOT for medical advice, but you can learn a lot. This video and other informative links will be useful.

Have You Been Tested? 
A good motto is Test everyone, test often.

Celiac signs and symptoms may come and go. So a person can have celiac, have no current noticable symptoms, and still have harmful autoimmune activity brewing.

If you ask your doctor to test you and your request is refused FOR ANY REASON, find another doctor. The test is a simple blood test, and should be part of a thorough physical workup. Even if you have had previously negative results! There is NEVER a good reason not to include this test with other thorough check up or with investigative blood work.

Get tested if you have a family member with celiac or you have related health conditions.

Test & Test Results
A POSITIVE test result is always a confirmation of celiac. 

Some Negative test results are really a "maybe". It is possible to have celiac and have a negative result multiple times before the level of antibodies registers a positive test result.

This article offers a fascinating explanation about the antibodies and testing: About Blood Tests.  

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