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Borderline Positive Bloods?


mayakeller

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mayakeller Newbie

i have been perousing through the topics and reading all these topics about help diagnosing people's results etc., and finding it overwhelming - particularily because my paed didn't give me the values......she called me and said they were positive for celiac and they were referring me to the gastro - called later in the day and said not to stop the gluten yet as specialist said the values were borderline........

so if a result is borderline does it mean there is just an intolerance there and not the disease - i guess what i am getting at is something should be making the results abnormal - so if not celiac then what?

my ds is 2.5 and having many symptoms - we are seeing allergist as allergies are almost a positive just not sure exactly what they are yet and getting results from a sleep study done as ds has major issues with sleeping etc.,

thanks for your time,

beflustered mom of logan


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ravenwoodglass Mentor

Any result in the positive level is positive. If you are going to chose to biopsy, and that is your choice, you do need to stay on a full gluten diet. If you are chosing not to biopsy then you can go gluten free. However if you are doing the biopsy and have been gltuen free and are challenging for a month or two and you become very ill please be sure to let your doctor know right away.

Also biopsies are hit and miss so even if the doctor says that the endo was fine you should still do the diet for at least a couple of months strictly to see if it helps.

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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.
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      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.
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