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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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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    • That's good to know about Texas Children's, unfortunately I don't believe they accept our insurance. Our former pediatrician joined with one of their medical groups and we had to find a new one due to insurance. I'll check out their site though.
    • 9 months ago I went to my doctor for normal blood work.  She called me to tell me everything looked great, but o yeah, my gluten sensitivity levels were extremely high.  I should probably stop eating gluten since it looks like I have celiac.  She hung up and I never heard from her again.  I cut out gluten completely, even though I have never experienced one single symptom of celiac.  9 months later, I decided to reach out to another doctor to get a second opinion, as I experienced absolutely zero change on 9 months of strict gluten free diet.  All this doctor did was request the results from the previous doctor, tell me it is confirmed I have celiac, and hung up the phone.  This angers me tremendously on two counts.  One, I have absolutely zero symptoms of celiac, and would NEVER know if I was "glutened".  Two, the complete lack of information or support from both doctors is horrifying to me.  And finally, I simply do not believe the diagnosis and as considering just starting to eat a normal diet again.  I would never know the difference.  I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free.  Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten.  I could just pretend I never heard from either terrible doctor and go on living my life.  Someone has to have been in the same situation as me, right?
    • Texas children's hospital in the med center has a celiac center now.   https://www.texaschildrens.org/departments/celiac-disease-clinic Good luck!  
    • this is a very common subject on here.  personally, most of my tests were negative, but i did the same thing you did (stopped eating gluten before the tests) my gi advised me to continue eating gluten free because i was so malnourished and when i stopped the gluten i actually began to gain weight.  in other words, i think she was afraid for me to do the challenge bc it might kill me lolz.  some people want a definite dx if they have kids that need to be tested in the future, some will not follow a strict g//f diet without a firm diagnosis (they think they can cheat just bc they were never formally diagnosed) what happened with my scope is the dr saw evidence of damage.  that and my response to the diet were enough for me.  she advised me to stay gluten-free and i agreed.  it's been tough sometimes, but i never purposely cheated (that's how near death i was - swore i was dying of the big 'c'.......what a relief to not have that and my 'chemo' is 'impasta'.  or fake bread. )  welcome to the forum and good luck with whatever you choose 
    • I'm already noticing a difference after five days on the gluten-free diet...acid reflux is gone and stomach pain is getting better. I am glad you're going to try the gluten-free diet, Vanillabean, and get copies of all your results. I hope you find some relief from the pain soon! I'm still waiting for my biopsy results. I did call my doctor's office today and found out the genetic test was positive for a celiac gene (DQ8). My doctor was hoping to rule out celiac with that test, but now it's still up in the air. Still waiting.
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