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Waiting For Test Results


Kathy'sUnicorns

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Kathy'sUnicorns Apprentice

Hi all;

I had my blood test done Saturday and they still don't have the results back. This is my second day of being gluten free and I feel like a new person. On Monday I had left over japaneese steak house food (a last time out there if positive) for lunch. I was feeling so out of it. I felt drugged up, I couldn't concentrate on anything for an hour or so. Then that night for dinner I had fish that was breaded and started having the most excrusiating pain I've ever had and decided to go gluten free the next day. Even if my test results are negative I have had major improvement in just two days.

A little about myself. I have lupus (another autoimmune disease) so I'm sure I probably have Celiac Sprue. I've had problems with having bloating and pain in my stomach off and on for about 8 years. When I think back now I believe the times I didn't have pain I was on high doeses of prednisone.

Since about Spring I've started dropping things, having to look at words twice because I would read them wrong, when I spoke I would want to say one word but another one would come out (that made no sence <_< ) amoung other things. I read a post here the other day (not sure if it was this forum or not) that someone was saying things they had happening to them before being diagnosed and it was me to a T! I was so excited to finally find out I may not be as crazy as I thought I was.

Hope to get to know you all very well and will definately come to you for help and my time of uncertanty.


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Guest keegans_mommy

I use to do that with words too! I would try and say one thing but another would come out, I would stutter and look stupid constantly! I hated public functions because of this nonesense!

I am happy you are starting to feel better! It will continue to feel better the longer you go without gluten. :)

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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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