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Was Just Tested


simplyconfused

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simplyconfused Newbie

i was just hospitaliized for having acid reflux disease. ive had ard for over 10 yrs now and ive had 2 major surgerys to try and fix it. i had a tumor in my asophagus when i was 12 and at the age of 14 had another major surgery to remove the tumor again. well im getting off subject. i was having major pains i my stomach and chest and was hospitalized they went to do an endoscopy well i dont know why but they decided to go into my small intestine and take a biopsy. im scared that with all that is wrong with me so far that this is just going to push eerything over the edge. i havent gotten the results back yet but i have a feeling that i am going to be diagnoised with celiac disease. im already limited to what i can eat such as no milk products no citris and no tomatoes. im a huge pasta lover and i dont think ill be able to give it up. it makes me sick but im full blown italan and love it. im so confused on what to do. any help?


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tarnalberry Community Regular

keep eating pasta - but get the gluten free kind.

the diet is a major shift, but *once you get past the learning curve* it doesn't have to be that hard. you find the alternatives that work FOR YOU. and there are so many foods out there (which you probably haven't tried before, but could eat) that can taste excellent (even if they're not a substitute for what you know). take it one day at a time, and be patient with yourself. (and read lots of the posts here. :) )

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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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