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Genetic Testing A Must?

mamamonkey

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mamamonkey Rookie
mamamonkey
Posted

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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kareng Grand Master
kareng
Posted

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"

mamamonkey Rookie
mamamonkey
Posted
  • Author

Thank you Karen. :)

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      Feeling ill

      By knitty kitty · Posted

      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
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      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
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      fed up italian

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      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
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      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
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      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
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