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Diagnosed With Just Celiac Panel?


amarieski

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amarieski Apprentice

Im newly diagnosed , but as far as I thought the true way to diagnose is through intestinal biopsy correct? I had the celiac panel as far as I know (blood test) and what my doc said was one was normal not sure which, next was above normal and last was abnormally high <_< so what was suggested is gluten free diet, vitamin levels checked next week, referral to gi doc and then retest levels in one month. Im also pregnant so I would assume any internal testing would wait a bit until after the baby arrives. I guess also what I thought was any gluten restraint should wait until after biopsy or internal testing to be accurate so why would they suggest the diet now? and wouldnt that effect a proper diagnosis?

thanks a million

Dee


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lovegrov Collaborator

First, I am not a doctor or a medical person.

I don't know which of your blood tests were positive, but celiac blood tests are rarely false positive. There's a good chance you have celiac.

Normally you would indeed stay on gluten until the biopsy but the fact that you're pregnant complicates things. Untreated celiac affects your ability to absorb nutrients and vitamins and so has the potential to cause problems with pregnancies. Many women have perfect pregnancies with untreated celiac, but the chance of problems increases. So even without a biopsy, it would seem to me your doctor has given you prudent advice -- go gluten free. If you want to do a challenge and have a biopsy after the pregnancy you can do that.

richard

Rikki Tikki Explorer

I believe the blood panel is enough to be positive for celiac. You are right that if you go gluten free the villi will heal, but you are pregnant and to ensure the baby receives nutrients I think you should remain gluten free. I just don't think the biopsy is necessary to prove you have it. If I had known what I do now about celiac I would have just had the blood test and would not believe the endscopy was necessary, but I was not told the blood was positive until after the biopsy confirmed it for the doctor.

amarieski Apprentice

Thankyou guys very much, my thoughts exactly that bc I am pregnant is why she told me to go gluten free, considering I wasnt sure if the panel was enough, Im sure now through reading again more info that a biopsy just confirms it more. So that puts me a little at rest that the blood tests are enough, I cant see why then after the baby they would tell me to get back on gluten just so they could do a biopsy lol. I already have a daughter and shes great, ultrasounds so far show this child also is just fine so Im thankful, and luckily the baby is taking what he needs from me eitherway so I know why I feel cruddy! only 10 weeks left also so hopefully this diet will help more if naything:)

Thanks so much again

Dee

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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
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    • Churley
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