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Newly Tested - Advice?

marcia24

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marcia24 Apprentice
marcia24
Posted

My blood test was positive for celiac and I am waiting for my biopsy...can someone please give me some honest feedback? How accurate is the blood test, should I assume that I have it based on that and is the biopsy just a confirmation? Also, can someone walk me through the biopsy - what happens exactly? I am kind of wimpy so I need honest answers to prepare myself for what will happen. Thanks in advance!!

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Lister Rising Star
Lister
Posted

as for the biopsy i have not had one done so i cant answer that, only things i have had done is a upper GI so far and a catscan, gi is where the found what they think is a sign of celiac, and im having blood work done tomorrow

but as for the blood work from what i have read its impossible to have a false positive but its easy to get a false negative

oh and welcome to the community

tarnalberry Community Regular
tarnalberry
Posted
My blood test was positive for celiac and I am waiting for my biopsy...can someone please give me some honest feedback? How accurate is the blood test, should I assume that I have it based on that and is the biopsy just a confirmation? Also, can someone walk me through the biopsy - what happens exactly? I am kind of wimpy so I need honest answers to prepare myself for what will happen. Thanks in advance!!

Since you are scheduled for a biopsy, do NOT go gluten free until after your biopsy. You have celiac disease (since your blood test is positive) but some doctors want the biopsy since celiac is technically defined by damage to the intestines, and you 'have to see it to believe it'. Once you have th biopsy, however, you can go gluten-free immediately.

I haven't had the biopsy, however, so I can't say anythinga bout the process.

AmandaD Community Regular
AmandaD
Posted

Marcia - My ttg bloodtest came out to just 10.5 and the doc was not totally certain I had celiac, she thought it might be stress. But sure enough when they did the biopsy - where they took TONS of samples from different places in the duodenum and jejunum (make sure they do this with you too)...they actually found the very beginning of Celiac...so my doc actually said to me "Man, is my blood test good or what?"

Get the biopsy done, because then they can a)make the accurate diagnosis of celiac and B) they can tell you how things look in there and how much damage there is so they can watch you heal. The biopsy is extraordinarily easy. They get you in the room, put some drugs in you to make you have amnesia and you're out for around 2 to 3 hours. Afterwards your doctor will tell you how you looked, but you have to wait until the biopsies are back to determine whether or not it's celiac. He said I looked great inside, but the biopsy said differently.

I've had Celiac since September and if you have any more questions feel free to pm me. Amanda

penguin Community Regular
penguin
Posted
as for the biopsy i have not had one done so i cant answer that, only things i have had done is a upper GI so far and a catscan, gi is where the found what they think is a sign of celiac, and im having blood work done tomorrow

but as for the blood work from what i have read its impossible to have a false positive but its easy to get a false negative

oh and welcome to the community

You've been gluten free for two weeks, right? That will probably yield a negative result, you have to be eating gluten to create antibodies...

Lister Rising Star
Lister
Posted

so your saying they can only see the damage with a biopsy so are my doctors lying to me when he said he could see stuff with my GI or does that meen i have tones of damage? he said subsarin folds in my small intestines.

I hope your biopsy goes well hang in there

SueC Explorer
SueC
Posted

Blood work is accurate but the endoscopy will tell you for sure. How high were your levels?

The endoscopy is no big deal at all! You will be given a mild sedative and won't remember anything. My throat was a little sore afterward but nothing too bad. I was back to work the next day. Don't worry about it.

You do need to be eating gluten though so don't go gluten-free until after your tests.

Good luck and welcome to the celiac community. This website is a very good source of information.

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penguin Community Regular
penguin
Posted
so your saying they can only see the damage with a biopsy so are my doctors lying to me when he said he could see stuff with my GI or does that meen i have tones of damage? he said subsarin folds in my small intestines.

I hope your biopsy goes well hang in there

I don't know what that means. Unless you have advanced celiac disease, it's not likely he'd see it through the upper GI alone. Actually, even if your intestines look like linoleum I don't know how he'd see celiac damage. To see the villous atrophy, biopsies of the villi must be analyzed with a microscope.

About your blood test, if you've been gluten-free for 2 weeks, it will likely skew the results. I'd reschedule the blood test for a few weeks from now and eat all the gluten in that time that you possibly can.

SueC Explorer
SueC
Posted

It is possible to see evidence of celiac during the endoscopy if it is really advanced. There are what is known as scalloping folds in the intestinal wall that is pretty specific of celiac. This is my understanding anyway. My GI doc told me that by looking at by bowel he pretty much knew what the pathologist would tell him.

Lister Rising Star
Lister
Posted

i told the doctor that and he said that they had made advancements in the tests and you dont have to have gluten for acurate results. and as for my GI it was a upper GI with some sort of milkshake thing they made me drink then tehy took x-rays all the way down, and found subsarian folds in my small intestine- aparently he says these folds are a sign of celiac disease and so he schedualed me for the bloodwork

anyways sorry for straying off topic

Guest nini
Guest nini
Posted

with the bloodtest, yes you have it, regardless of what the biopsy says, go gluten free anyway, but do not go gluten-free until after the biopsy, it will skew the results.

AmandaD Community Regular
AmandaD
Posted

To add, my doc also saw "scalloping folds of duodenum" - and that is also characteristic of Celiac and could be seen with the naked eye, the villous atrophy they can't see...

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