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Confusing test results, help?


confusedandsearching

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confusedandsearching Newbie

Hi all I am new to the group and extremely confused!

A little background about me - I have not had a solid stool in 6 years. Yup 6 flipping years

My original family doctor said it was IBS - tested for parasites etc (all negative) and told me to move on. I got a new GP and at this point it had been 4 years of solely diarrhea so he referred me to a specialist . I literally go 8-11 times a day - it's insane IMO.

Anyways I received my blood results that were 2.75g/l for IGA and TTG 0.05% (for which I have no idea what this is/means) other than that it is negative? no idea how close to negative or not.

I had an endo scope and a colonoscopy as well. My GI called me and said "I rarely have pathologist call me about files but I have a meeting with 2 to discuss your findings' and said my results came back essentially positive for celiac, crohn's and some colitis' and  that my throat is so narrow as it is so lined with white blood cells there is a growing concern of choking.

She said they are so confused as essentially I am missing an element of each disease ie crohn's while my biopsies are positive there are no ulcers visible to her - so I have an MRI in 2 weeks Celiac my blood is negative so she doesn't think it is that,,,,anyways I went and saw an allergist yesterday and he was 99% that it is celiac - he diagnosed the rash on my hands as dermatitis herpetiformis, my nail beds and being indicative to malnutrition (bumpy/brittle) and said the little silica like fat globs I describe in my stool all point to celiac

any insight or able to decipher the blood test results?

Sorry if this is confusing or poorly written Im soooooooooo tired!

Thank you for responding/reading


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tessa25 Rising Star

You should get the full Celiac blood panel done. It includes the following tests: TTG IGA and IGG, DGP IGA and IGG, EMA, IGA. A positive on any one test combined with celiac evidence on the endoscopy = Celiac.

There are people here who only fail one of the tests you didn't have.

If Celiac testing is complete and you still don't have answers there's nothing preventing you from going gluten free for several months 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.
    • 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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