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Help - Need Some Advise


aussiechick4jc

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aussiechick4jc Rookie

Hi everyone,

My name is Karen and at the end of this year I will turn 50. I would really appreciate any input or advise anyone can give me.

I have finally found a doctor who is taking me and my medical issues seriously. Although this has been great, all the tests that I


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mommida Enthusiast

The rule of thumb, once a Celiac, always a Celiac.

How were you tested for Celiac? You should not go gluten free until all Celiac testing is completed.

Did you ever have your thyroid checked?

Allergy testing?

Start keeping a food journal.

aussiechick4jc Rookie

My Celiac's test was bloods and so was the Sjogrens tests.

I have had thyroid checked - all good.

Had allergy testing - NOTHING. Tests where also bloods.

I have been Gluten free for neally a week now and have already noticed some improvement, which makes me very happy.

Am planning on keeping food diary as I'm sure I will get the Gluten free thing wrong in the initial stages. This may help me also if I have any other good issues.

Any additional advise would be much appreciated.

Thanks heaps

Karen

mommida Enthusiast

Why is sleeping a problem? Insomnia? Try taking some sublingual vitamin B12. Or is it painful to lie down?

If your symptoms don't start getting better, and it could take 2 years to feel perfect, you may have to get an endoscopy with biopsy. So keep looking for a doctor that listens to you.

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    • 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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      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.
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      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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      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
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