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Is It Really Celiac's?


Now I know

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Now I know Newbie

Hi All~

I was recently (this week) diagnosed with Celiac's. However, after reading so many posts in here I wonder if I was misdiagnosed!! I don't/haven't had all the sypmtoms that you guys have had. Mine started about a year ago of just instant diahrrea after eating, sometimes not. Little cramping, little gas, no bloating. The dr. did a biopsy of small intestine and blood work. I wonder if she diagnosed this because she didn't know what else it could be. Should I get a second opinion? If that is different...then what???? LOL

Thanks for the help!!!

L.


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happygirl Collaborator

If you were diagnosed by biopsy, then you have Celiac. There can be a range of presentations...from a silent Celiac (no symptoms) to someone who is debilitated by symptoms. Most people fall somewhere in the middle, but with varying symptoms. There isn't "one" type of Celiac.

Here are some good sites for reading:

www.celiac.com

Open Original Shared Link

www.celiacdiseasecenter.columbia.edu

www.celiaccenter.org

Misdiagnosis usually happens the other way, i.e., someone has it but it isn't recognized. Celiac damage is pretty specific to Celiac, so if you have the signs of it, you have it. The biopsy is the "gold standard" for a Celiac diagnosis.

elye Community Regular

I was one of those silent celiacs before diagnosis, i.e., I had no noticeable symptoms with the exception of low iron. Quite amazing, really, that I was diagnosed at all, considering that the average celiac waits eleven years for a correct diagnosis, and many of them have very obvious, often debilitating symptoms!

If they've found the antibodies in your blood, then you're celiac. The blood panel rules the condition in if positive (it doesn't rule it out if negative, however...but that's another whole post!)

Welcome to the board! :)

babygirl1234 Rookie

it toke a year before i was DX i started with really bad stomach pains the doctor though i was crazy was ammited off and on in the hosp they though i was making it up, and fanilly my mom went to my ped doctor after a whole yr of being amitted being told i was faking it she fanilly got them to refe me to a GI doctor they did a snono for galstones then they did the enogscope and bi thats how they found out that i had celiac disease and after my bday i went gluten-free and this past yr i went back to having stomach pains everytime i ate the D, went to the doctor was amitted for 14 days did tests all came back fine, went for the both scopes showed that it was my celiac disease acting up, it toke all those years i hardly cheated maybe once a year, nope not doing it anymore because if i do i get bad stomach pains and feel like tossing my cookies,

Now I know Newbie
If you were diagnosed by biopsy, then you have Celiac. There can be a range of presentations...from a silent Celiac (no symptoms) to someone who is debilitated by symptoms. Most people fall somewhere in the middle, but with varying symptoms. There isn't "one" type of Celiac.

Here are some good sites for reading:

www.celiac.com

Open Original Shared Link

www.celiacdiseasecenter.columbia.edu

www.celiaccenter.org

Misdiagnosis usually happens the other way, i.e., someone has it but it isn't recognized. Celiac damage is pretty specific to Celiac, so if you have the signs of it, you have it. The biopsy is the "gold standard" for a Celiac diagnosis.

Well! That definately clears that up!!!! Thanks for taking the time to respond! Going shopping today for books and info. Good day!

happygirl Collaborator

Pick up Dr. Green's book....its awesome!!!!

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    • Mari
    • trents
      Sorry, I think I got you mixed up with another poster.
    • rei.b
      I hadn't been eating gluten free before having the antibody test done. I started eating gluten free after having the test done because the gastro PA told me to eat gluten-free for 6 months. I'm now 3 months in.
    • trents
      I tend to agree with RMJ. Your doc took the reasonable and practical approach to diagnosis. All things considered, it was the right way to go. However, if you have first degree relatives that show signs of possible celiac disease, urge them to get formally tested before they start the gluten free diet.
    • RMJ
      It sounds like you have a very reasonable GI doctor, who diagnosed you based on family history and symptoms after eating gluten. I would consider you lucky! The other option would be to make yourself very sick by doing weeks of a gluten challenge prior to an endoscopy.
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