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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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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