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Genetic Testing A Must?

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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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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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    • pablito, here is the full serum (blood) panel. Make sure your doc runs ALL of the tests on it, not just 1 or 2. Insist!!!!! YOU are in charge. Remember that. Some people test negative on the most common 1 or 2 tests they run so it's always better to have the full panel run. Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG Remember that celiac disease is a genetically inherited disease so it's important for you to find out if you have it and if so, then your kids & all first degree relatives (siblings, parents) need to be tested every 2 years in the absence of symptoms but right away if symptoms present. Do not go gluten free after the blood work as if you get positive blood work, you will need an endoscopy which you'll need to continue eating gluten for. The pimple things may or may not be the celiac rash as there are many skin problems associated with celiacs.
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