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silvervelvet

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silvervelvet Newbie

First I have to say "THANKS everyone for all of the great info here!" I'm so excited about finding this message board. I went on a gluten free diet almost 3 days ago and can fit into my clothes again!! Last week I looked pregnant by the end of the day everyday. So, on Tuesday Im going to call my Dr. and request testing. I dont know what to ask for. Also, how long do I have to be on a gluten diet before testing can be done? I cant wait until this weekend is over!

My friends think that Im nuts for giving up bread and such but initially the Dr. thought I had cancer. If I can deal with that cancer scare then I can give up bread. Today I made pancakes from rice and tapioca flour. Even my daughter and her friend ate them.

So, think about what you would have done differently now that youre in the know, and tell me.

In Jan. of 05 I had allergy testing done. One of the items listed was wheat. It came out negative (Im pos. to just about every tree, grass, mold, etc) and I thought to myself "well, I dont have Celiac". I had no idea that it was a totally different test. If I knew the right questions then I could have asked my reg. doctor for further testing. I just dont know enough.


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If you are testing for Celiac there is a complete celiac panel.

I hear that you have to be on a lot of gluten for a while to get a pos. test.

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      Any chance you are getting traces of gluten in your diet? 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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      Your interpretation is on the right track! Based on your results, you do have one of the genetic markers associated with celiac risk—HLA-DQ8—which means you inherited DQA1*03 from one parent and DQB1*0302 from the other. These two alleles together form the HLA-DQ8 haplotype, so having both confirms the DQ8 positivity (not just one alone). Since you’re DQ2-negative but DQ8-positive, this still means you have a genetic predisposition to celiac (though not everyone with DQ8 develops it). If you’re experiencing symptoms, the next step would be discussing antibody testing (like tTG-IgA) or an endoscopy with your doctor, but I think you decided not to do the gluten challenge and just go gluten-free.
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      A quick Google search turns up lots of options, but be careful eating out, as cross-contamination is common--even in restaurants that offer a gluten-free menu: https://www.google.com/search?q=gluten-free+in+Wilmington%2C+DE&rlz=1C1CHBF_enUS981US983&oq=gluten-free+in+Wilmington%2C+DE
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      It’s absolutely possible for celiac flares to affect your eyes—many people with celiac disease or gluten sensitivity report eye inflammation (like uveitis or dry eyes) during systemic reactions. Since celiac is an autoimmune condition, the inflammation isn’t limited to just your gut; it can trigger immune responses elsewhere, including the eyes. The fact that your symptoms coincide suggests a clear connection, even if your diet has been strict. Cross-contamination or hidden gluten could still be playing a role, or it might be worth exploring other autoimmune triggers (like vitamin deficiencies or coexisting conditions). Have you talked to your doctor about testing for inflammation markers or seeing an ophthalmologist? It’s frustrating when symptoms persist despite your best efforts, but you’re not imagining this—research and patient accounts back it up. Here is a recent scientific paper on this: https://www.cureus.com/articles/358124-ocular-insights-exploring-uveitis-as-a-manifestation-of-celiac-disease#!/
    • Scott Adams
      Your journey sounds incredibly frustrating—dealing with mysterious symptoms for years, only to piece together the puzzle yourself, is both impressive and exhausting. It’s wild how something as routine as antibiotics can seemingly trigger such a cascade of issues, and it must’ve been scary to deal with the hives and swollen tongue without clear answers. The fact that cutting gluten and adjusting vitamin D has brought such dramatic relief (even when doctors didn’t connect the dots) speaks volumes. It’s so validating when the body finally responds to changes, even if it means giving up foods you love. The skepticism from others must be tough—it’s frustrating when people dismiss what you’ve lived through, especially when the proof is in your improving symptoms! Whether it’s NCGS or something else, your experience is real, and it’s amazing you’ve taken control of your health despite the lack of outside support. Fingers crossed that dropping the last of the Zyrtec goes smoothly and that your progress continues. 
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