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Pre-diagnosis, symptoms. My story.


Munch.abe

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Munch.abe Newbie

I'm new to this site. So hi all!.

As of today, I've came to a self-diagnosis that I may have Celiac disease. I've setup an appointment to see the doctor, but I did try a gluten-free burger and well it went fine! Of course I'd didn't like the taste, but I didn't want to throw up after I ate it.

A bit of a back story, but I didn't come to the conclusion that I had Celiac disease till today. I'm 21. As far as I can remember I've always had bad stomachaches when I was a child. I was always going to the nurses office in elementary school and they thought I was faking so they'd kick me out. They'd blame my parents for not feeding me well and why I was always sickly skinny. Doctors' thought it was many things, but none of them were correct. I'd always throw up my food, not on purpose of course or it'd run through me quick that I'd go to the bathroom within 10 minutes of eating. I never bothered to look into it because doctors said it was nothing. I knew what celiac disease was, but again it didn't occur to me that I might have it. I figured it was an anxiety thing because of my generalized anxiety disorder. It wasn't until a year ago that I took human anatomy and physiology and it was there that those symptoms fit with what I've experienced.

So yeah, I may have cut a lot out to get to the point, but my eating habits were horrible. I'd eat junk food, fast food and I'd get sick all the time, but I'd be better after.

I'm afraid it's too late to make the change to my diet, but I don't know. I'm just afraid what the doctor will say when I take those test.

Thank you all!


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frieze Community Regular

never too late to change your diet.  But get all testing done first.  the anxiety could be a symptom in and of itself.

mommida Enthusiast

You have to eat gluten during the testing.

Anxiety is a symptom, most likely from vitamin B 12 deficiency.

Changing your diet seems overwhelming at first.  There are so many products on the market now and the general population has more knowledge.  You need to have a positive attitude of "what you can eat"; don't concentrate on can't.

Good luck with testing, and feel better soon!

GFinDC Veteran

Yep, you need to get tested first before starting the gluten-free diet.  The blood antibodies are usually tested first and then an endoscopy is done to check for intestinal damage.  If you stop eating gluten before the testing it causes the immune reaction to decrease and the antibodies to decline.  So the tests for antibodies are not going to be much use then.

Going gluten-free is a good diet though.  You will probably end up eating a much healthier diet than your peers.  That's a good thing.

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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.
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