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Guest Zmom

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Guest Zmom

Doctors have been giving me funny looks for over 10 years when I say I have nerve pain all over my body. Then I read the enterolab brosure that listed the nerves as one of the things the immune system can turn on with celiacs...

Its much better off the gluten but this humid weather agrivates it. No one thinks its fibromyalgia.


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Guest nini

what do you mean "no one" thinks it's fibromyalgia? That's another one of those illnesses that most Dr.s are absolutely clueless about...

I have nerve pain all over my body, staying active makes it bearable although GETTING active when I'm hurting is extremely difficult... and I'm hurting a lot today. I was also diagnosed with Fibromyalgia, based on having the trigger points and many related syndromes and no other explanation for it.

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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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