Diagnosis of Celiac

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About five years ago, when we started to think our oldest daughter may just have Celiac, we did not know what to do.  The landscape has changed drastically since then, but you did not hear much of Celiac.  We completed the blood test, which came back positive.  At that moment, we did not know what to do next.  Go on to the endoscopy to prove it without doubt?  Go ahead and start a gluten-free diet to see if things improved, even though we may always wonder if the diagnosis was definite?  We went ahead with the endoscopy to conclusively know she did suffer from Celiac Disease.

A few years later when our other daughter started to show symptoms, we went ahead and did the blood test, which came back positive.  Knowing her sister’s background with Celiac, we did not go forward with the endoscopy…just started a gluten-free diet, which quickly improved her condition.

We recently found a website and newsletter (http://www.cureceliacdisease.org/wp-content/uploads/2012/01/CdC_Newsletter_0112_v4-link.pdf) that updates us on the status of Celiac diagnosis.  It sounds like maybe you can complete additional tests:

For a child at risk for celiac disease
because of a close relative with celiac or a
related condition such as Down syndrome,
Type 1 Diabetes, or short stature:
1. This child should have the gene test to
determine if he carries the gene for celiac
2. If so, he should have the tissue transglutaminase antibody (TTG-IgA) test and
total serum IgA test;
3. If the result is greater than three times
normal, he should be referred for a biopsy.
If the result is positive but less than three
times normal, he should:
4. Have the endomysial antibody (EMA)
test. If that comes back positive, the child
should be referred for a biopsy. If negative,
there needs to be further investigation,
while the child stays on a normal diet.

So maybe some changes to help more quickly identify those with Celiac and get them on the right track.  Definitely good for all of us to stay current on all the work going on in this field.

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