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Testing

mstrain

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mstrain Rookie
mstrain
Posted

I was diagosed with celiac's three years ago at what seemed to be the onset of the disease. Once diagnosed, is it necessary to have testing repeated? Blood tests, biopsies, other? If the "treatment" is to eat gluten-free, what would the point of repeated teasting be? I am ignorant to "follow-up care" if such a thing is necessary. Please enlighten me!

Thanks!

Michele

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ECD Newbie
ECD
Posted

so, my doctor told me that you get diagnosed, and then sometimes they use the tests to confirm the diagnosis because there may be something else going on that might be serious if left untreated. sometimes, a positive dietary response is enough, but that's fairly subjective as there can be a large placebo effect, etc., so they like to have something a bit more concrete than "i'm feeling so much better!" i don't know if that's just mine or if that's the medical standard. i'd rather know for sure, but i think a large part of that is from getting a lot of 'diagnoses' in the past which basically amounted to "i don't really know what you have, so i'm going to say its this," you know? i think at this point (and this is just me - i'm sure lots and lots of people disagree), if all my tests came back negative and the doctor wanted to pursue other legitimate tests, i'd totally do it... while eating gluten-free :) i'm just afraid, without confirmation, that maybe it's wrong again! obviously, i'm a bit too trusting of the medical profession, though, because if they told me tests were negative but still believed it was celiac disease, then i would be okay with that... as long as it resolved my symptoms. is that completely crazy? sorry for rambling at you but it's late and it's been a long day :)

LuvMoosic4life Collaborator
LuvMoosic4life
Posted

You should have repeat testing done to make sure you are healing and that you are not getting gluten in your diet.

happygirl Collaborator
happygirl
Posted

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Gemini Experienced
Gemini
Posted
I was diagosed with celiac's three years ago at what seemed to be the onset of the disease. Once diagnosed, is it necessary to have testing repeated? Blood tests, biopsies, other? If the "treatment" is to eat gluten-free, what would the point of repeated teasting be? I am ignorant to "follow-up care" if such a thing is necessary. Please enlighten me!

Thanks!

Michele

I was diagnosed via blood work only....the endo was not needed. I have had repeat testing to ensure that no gluten is getting in but I only did that to shut the doctor up. I went from being end stage Celiac and extremely ill to resolution of all symptoms and a much needed, 15 pound weight gain. As far as I'm concerned, that, along with my blood work, was proof enough that I was healing.

I think it all depends on how well you feel and whether you are confident enough with food ingredients to know you are not ingesting any gluten. I personally feel that because the endo is so invasive, it should only be done if a person is not responding 100% to the diet or there are other, in your face symptoms of something else.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

My son's GI wanted to do another biopsy 4 months after his first biopsy. He said it was because he wanted to make sure gluten free was working and there weren't other issues going on (like my son's food allergies). I'm glad we did it because he discovered that Pepcid was not doing anything for my son's reflux and he put him on different meds.

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