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Question For A Doctor


msimpson

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msimpson Newbie

Last April I had an upper endoscopy to rule out Eosinophilic gastroenteritis and Sprue and the results showed slight atrophy of the duodenal mucosa. Doesn't that mean Celiacs Disease??


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happygirl Collaborator

What did your doctor say about it?

If you are concerned about your doctor missing the diagnosis, it may be worth it to contact a local Celiac support group to ask for a recommendation for a knowledgable doctor, and visit them with your records, including your biopsy/pathology report.

Here is some info on the biopsy:

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  • 4 weeks later...
trickyricky585 Newbie

Hi sorry this just seemed like the right place to post this. I have recently had a blood test for celiacs disease but came up negative even though whenever I eat gluten I get bloated stomach, stomach pain and the big D. When I went back to the doctors they put me on a gluten free diet and told me to reintroduce things slowly however I could only take small amounts of things before I felt ill again. I am now not sure what to do as I dont want to cut out gluten unnecessarily but also dont want to feel ill? should I get a biopsy just to check that I dont have something else and am excluding gluten needlessy?

Kind Regards

Richard Freeman

Jestgar Rising Star

Your body is more accurate than any lab test. If something (anything) makes you sick when you eat it, it's a good indication that you probably shouldn't be eating it.

You could get a biopsy, if you think it will help you understand what your body is doing, but even if it's negative, you're still stuck with the fact that gluten makes you feel bad when you eat it.

trickyricky585 Newbie

thanks for the advice suppose your right doesnt really matter if I am celiac or not if I still cant eat wheat :lol: back to looking for some nice gluen free bread in asda and thank you again

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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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