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Between the blood and endoscopy test


Staceyb09

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Staceyb09 Newbie

my blood test came back positive for celiac a little over a week ago. I immediately eliminated gluten from my diet. It will still be a few weeks before my endoscopy, and I didn't realize I was supposed to keep eating gluten. Will I be ok, or do I need to go back to eating it for the test to be accurate. I'm just starting to feel better and don't want to go back and forth. What do you recommend? Thanks. 


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GFinDC Veteran

Hi Stacey,

I think you should go back on gluten now.  Why go through an expensive internal procedure and not be prepared as best you can be?  It's not something you want to repeat for no good reason.  You really shouldn't stop eating gluten until all the tests are done and the test results received.  It's rare, but sometimes test results get lost and then you wouldn't want to start all over.  Your doctor should have told you not to go off gluten until testing was finished.  That's bad on them.  You don't need to eat a lot of gluten, I think they say 1 or 2 slices of wheat bread is enough.  It might be worthwhile asking the gatroendocrinologist they can put you on a will call list.  Where you might get in sooner if someone else cancels their appointment.

In the meantime you could stop eating dairy now.  Dairy can cause a lot of symptoms in untreated celiacs.  But stopping it won't affect your celiac disease testing.

Welcome to the forum! :)

Irene Joanne Explorer

You need to be eating gluten every day for the biopsy to be accurate. 

For blood work it's 3 months and for biopsy two weeks is enough according to some docs. 

cyclinglady Grand Master

Why take a advice from strangers on the internet (though it is excellent advice and correct)?   Here is what the experts say:

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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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