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Genetic Testing A Must?


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#1 mamamonkey

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Posted 15 January 2013 - 03:28 PM

Hi everyone! I am new here. So, here's the back story. I had diarrhea, pain after eating, fatigue, and abdominal bloating for 4 years after the birth of my son. I had my gallbladder removed when he was 10 weeks old due to gallstones from pregnancy; so, I chalked all my GI symptoms up to no gallbladder.

Fast forward to this past May 2012. I decided to try going gluten free in a last ditch attempt to get off of Topamax that I had to take for migraines. Within 2 days of going gluten free, my GI symptoms significantly improved. After a month, I had dropped a pant size in bloat. I was able to get off of Topamax. (I know, I know, I should have gotten tested then)

In December, I had some additional issues that ended me up seeing GI. She then decided that I could possibly have celiac since all of my symptoms dramatically improved with cutting gluten. Serology was negative (I wasn't eating gluten). EGD showed mild inflammation, possibly suggestive of partially treated celiac (I ate gluten daily the week before my test).

So, now, I would like to have the genetic testing done. Since it requires prior authorization from my insurance, the GI is now saying that with my symptoms, symptom resolution off gluten, and the biopsy results that I don't need the genetic testing.

My question is, how hard should I push for this? I mean, is it worth changing docs over?
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Hi, I'm Melissa

Mostly gluten-free 5/12 in an attempt to help migraines

Surprise! All my GI symptoms resolved (that I was blaming on not having a gallbladder)

EGD 1/13; biopsies showed inflammation suggestive of partially treated celiac

Bloodwork negative (of course, I was gluten-free)

GI dx'd celiac 1/13


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#2 kareng

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Posted 15 January 2013 - 03:46 PM

This was just posted on the University of Chicago Celiac center's Facebook page:

"True or false? Genetic screening is the best way to know for sure if someone has celiac disease."


"The University of Chicago Celiac Disease Center Answer: False. Genetics are often times not even included in the diagnostic process. 30% of the U.S. has the genes for celiac disease, but <5% have it become active. In addition, if the genes aren't present then celiac can all but be ruled out as the cause of symptoms.
Like · Reply · 6 · 6 hours ago"
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#3 mamamonkey

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Posted 15 January 2013 - 04:11 PM

Thank you Karen. :)
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Hi, I'm Melissa

Mostly gluten-free 5/12 in an attempt to help migraines

Surprise! All my GI symptoms resolved (that I was blaming on not having a gallbladder)

EGD 1/13; biopsies showed inflammation suggestive of partially treated celiac

Bloodwork negative (of course, I was gluten-free)

GI dx'd celiac 1/13



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