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Diagnosis - Blood Test But No Biopsy?


mama pie

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mama pie Newbie

Hi

I saw a specialist a couple of months ago who ran the blood tests for Coeliacs. He told me that if I need a biopsy I would hear within a couple of weeks. I didn't hear back and my follow up is in July.

Is it possible that you can get a postive blood test that is, say, high enough that they think no biopsy is needed? Or could he not have called me back for a biopsy because the test is negative and so there's no point in the biopsy?

Has anyone been diagnosed on the blood test alone?

THanks :)


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mouse Enthusiast

I was diagnosed by blood test alone. I was too sick to have them do the bioipsy. I went gluten-free on the day of the blood test and following the doctor's orders immed. went gluten-free. I also have a problem with the thing going down my throat. Something to do with the meds. they use. The last time they did that to me was six years ago when I had a rare pneumonia. They had to stop and spent an hour regulating my heart and I ended up in cardiac intensive care for the next week and a half. Needless to say, I am curious about where my villi are now (since I am still so tired, after almost 28 months), but not curious enough to go through hell.

Guest nini

I too was dx'ed by blood test alone. My symptoms were very severe and I had had previous luck on the gluten-free diet and my Dr. said based on that to go on the gluten-free diet immediately too. My antibodies were highly positive for Celiac. It took my Dr 10 days to call me back...

If you haven't heard from the Dr. by now, call them back and see what's up, and then if he's not planning on doing a biopsy, go ahead and go on the diet and see if it helps you, if you haven't already.

Good luck with it all. I don't feel that the biopsy is as accurate a test as the medical community would like you to believe. Positive dietary response is the most valid diagnostic tool. If you feel better on the gluten-free diet and your symptoms start to improve, then you have your answer.

mama pie Newbie

Thank you both for your answers. I'm the in the UK so at the whim of the NHS, I've tried calling the Dr but never get anything but an answerphone. It's also possible that he didn't make a note on my file about calling me back and a different person filed my results.

Shouldn't I wait until I see if they do want to do a biopsy before starting gluten free?

Thanks again.

Guest nini
Thank you both for your answers. I'm the in the UK so at the whim of the NHS, I've tried calling the Dr but never get anything but an answerphone. It's also possible that he didn't make a note on my file about calling me back and a different person filed my results.

Shouldn't I wait until I see if they do want to do a biopsy before starting gluten free?

Thanks again.

Yeah, you shouldn't start the diet if they want to do a biopsy, but I would reccommend that regardless of the results, you try the diet after that and see if it helps. You do not need a Dr.s permission to eat foods that are naturally gluten-free. Are gluten-free specialty foods in the UK only available by prescription or can you get those at a grocery or health food store?

VydorScope Proficient

Personaly I think the biospy should be completely droped as a diagnostic tool for celiac disease, but not like I have any say in the matter. :)

Guest nini
Personaly I think the biospy should be completely droped as a diagnostic tool for celiac disease, but not like I have any say in the matter. :)

LOL!!! I completely agree!


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mama pie Newbie

I have hypothyroid disease already which entitles me to free prescriptions for life so yeah it would be nice to get foods for free on prescription - but I can buy them. My sister has a lot of IgA problems (is that the right term?) so I'm pretty familiar with exclusion diets. I had pretty much decided that I would go gluten free but a diagnosis always shuts people up doesn't it? My husband being one of them.... :D

mama pie Newbie

I meant to ask as well - can you get a positive blood test and NOT have celiac disease?

tarnalberry Community Regular
I meant to ask as well - can you get a positive blood test and NOT have celiac disease?

nope

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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    • Samanthaeileen1
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