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Blood Positive Biopsy Negative

carolp

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carolp Newbie
carolp
Posted

Saw my Doctor yesterday , I had my blood tests months ago all showed high positive. Have been gluten free for a while when I had my biopsy I ate gluten for a week and had my test.

Biopsy came back negative.

Doctor gave me a choice 1.To eat gluten for 4 months and be retested.

2.leave it alone stay on diet, as I am getting better, but the gold standard for celiac is still the biopsy.

She said she could not be 100% sure I have celiac

I am slightly confused as what to do

Is my blood a false positive?

I also have graves and had my thyroid radiated two years ago

Ihave terrible pain in most of my body but since I have been on the diet it has been getting better

The "D" has been getting better also

As I left her office she also told me to make sure to get my kids tested

Has anyone else had this happen to them?????

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FaithInScienceToo Contributor
FaithInScienceToo
Posted
Has anyone else had this happen to them?????

<{POST_SNAPBACK}>

Hi -

No, I have not had happen to me exactly what you had happen to you, but I did go gluten-free before getting a biopsy, only because I never thought I would agree to a biopsy in the first place, since I had already had WAY too many invasive tests - and I had read that biopsies can also produce false negatives - they can be performed incorrectly, and read incorrectly.

I will attach my 'signature' (my history) for you. MyGI officially diagnosed me "celiac disease" even though my biopsy came back 'no current damage seen,' because I had a high positive blood test (29 IgA) at 53 days gluten-free, and a very positive response to a gluten-free diet. Perhaps yours can too (if you ask, again), or you can find one that will do so, IF you need an official diagnosis.

Your doc did not do a 'proper gluten challenge,' BTW. One week of ingesting gluten post being gluten-free for a while will not produce villi damage - your doc should have known that... Did she explain that to you?

Reading about your situation, though, I would never again ingest gluten if I were you. I do hope that you do not 'need' a positive biopsy test for insurance purposes.

If you want to do it and if you can afford it, you can still do Enterolab testing, though, even after being gluten-free. It may also help you understand 'where you stand' if you get genetically tested (Enterolab does that, too).

Getting your kids tested is wise, and it is good that your doc told you to do that.

Best wishes.

Gina

nettiebeads Apprentice
nettiebeads
Posted
Saw my Doctor yesterday , I had my blood tests months ago all showed high positive. Have been gluten free for a while when I had my biopsy I ate gluten for a week and had my test.

Biopsy came back negative.

Doctor gave me a choice 1.To eat gluten for 4 months and be retested.

  2.leave it alone stay on diet, as I am getting better, but the gold standard for celiac is still the biopsy.

She said she could not be 100% sure I have celiac

I am slightly confused as what to do

Is my blood a false positive?

I also have graves and had my thyroid radiated two years ago

Ihave terrible pain in most of my body but since I have been on the diet it has been getting better

The "D" has been getting better also

As I left her office she also told me to make sure to get my kids tested

Has anyone else had this happen to them?????

<{POST_SNAPBACK}>

I agree with Gina. A positive result is much more reliable than a neg result. Whap probably happened is one and/or two of three things. - you went gluten-free, your intestines healed enough for neg. results. 2. the biopsy didn't locate the damaged area. 3. enough healing occured so that the biopsy was misread. To me, you've had two positive results - bloodwork AND diet challenge. The fact that your symptoms have subsided and you feel more normal on the gluten-free diet is proof of celiac disease, or at least gluten problems. Either way, the treatment is the gluten-free diet. Do you have to have a positive biopsy? If you don't, I would strongly recommend just doing the gluten-free and get on with your healing and healthier life.

KaitiUSA Enthusiast
KaitiUSA
Posted

First, biopsies can rule celiac in but not out. If you were gluten free damage could have healed, there could be sporadic damage, or could be in beginning stages and not show damage yet.

I would definitely go with your blood tests...also you said you have been improving on the diet which is the ultimate tests.

I would for sure stick with it....4 months of damaging yourself for a maybe positive biopsy is not worth it...even if you went back on it there is a chance it would not come back positive and you could still have it...it's so not worth it.

I also have Graves Disease and thyroid disease is common among celiacs.

You should get your kids tested and stay off gluten 100%(this includes beauty products, medications, etc)

Guest nini
Guest nini
Posted

I did not have the biopsy at all... With my positive blood test results my GI said that I did not need the biopsy. He also said that according to the latest info, the biopsy is NO LONGER THE GOLD STANDARD. Anyone still clinging to that outdated notion is missing too many people that really do have it. The biopsy cannot rule it out, it can only rule it in if they find damage. With the positive blood test and positive dietary results you DO have it... Stay 100% gluten free, have your kids tested, but don't be afraid to try them on the diet regardless of what the test results are.

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