They said that the intestines are inflamed.
Question
Just got a call from dr office they said blood test is not showing celiac disease but want to retest in 6 weeks
I don’t understand because they said that the intestines are inflamed I am confused as how can they know that from blood test. Also I have all symptoms that points direction of cd
So if anyone has any advice for me I would appreciate it. Dr said I should come back in 6 weeks ok so what do I do in mean time I am tired of fighting this awful illness whatever it is
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Celiac Disease 3 years 32 Answers 698 views 0
Answers ( 32 )
Keep gf. If it is celiac you will feel better. It still may not show in test.
Can’t be gluten free for bloodwork to show
My blood test was negative, but my biopsy came back as CD. Doctor told me it was because I was gf for 3 weeks before blood test.
That’s just it I am not gf yet
Well just to let you know you do not have to have a definitive diagnosis from a doctor to go gluten-free. We do not have one for my daughter and that is because the blood test showed negative for celiac and the doctor refused to do anymore testing. However we knew that we were up against a terrible battle and decided to do it ourselves. So we removed gluten from my daughters diet and she is now growing, gaining weight, sleeping has no chronic constipation, no abdominal pain no stomach pain no headaches. So in my opinion quite frankly I take the testing some time with a grain of salt
That’s sure what I am thinking. This has been hard and heavy for 20 years
My sister has all symptoms bt she jt has iretel bowel syndrome
Christina Hall that’s what they said mine was 20 years ago
She is gluten and dairy free now she better I have celiac
They said I had iretel bowel syndrome when I was a kid it wasn’t til I was 25 I gt told I had celiac
Wheat belly is a good book that mentions that even people who don’t test as celiacs have symptoms that point to it… and symptoms improve with wheat removal. He called them celiac lite I think. Because it’s obvious the body is responding negatively to wheat. But it’s not coming back on tests. Ibs is a common thing, so is acid reflux.
Tuesday was the first time they ever mentioned celiac and I had heard of it but didn’t know what it was
Thank you all so very much
There are two tests for celiac disease. The first is blood and the second is a biopsy of the small intestine. Did both tests come back negative for CD or just the blood test?
Just the blood test Sharon
They haven’t done biopsy yet
The blood test was pretty accurate for me. Iï¸ tested positive and then had the biopsy done, definitely celiac.
Don’t you also have to have a certain amount daily for the tests to even be accurate?
I just don’t understand why they put me off for 6 weeks if they ran in my shoes one day they might hurry along. Always exhausted no matter how much rest you get
My blood work doesn’t show im celiac but biopsy does. I’m 4th level grade b celiac. Ask for biopsy for celiac and colonoscopy. My GI does not do blood work for me anymore bcz my blood work doesn’t represent the right numbers. Good luck
Have you done a gene test?
No gene test
I am new to all this don’t know what to ask for
Did they put you on a restrictive diet?
Antibodies, gene (those are both bloodwork) then a scope \nAll 3 of those are the \
No they told me not to go on gf until next blood test in 6 weeks gi doesn’t want to see me for 6 weeks this is crazy
It totally makes sense. Celiac is an autoimmune disease where your body reacts by producing an antibody. If you are eating gluten but do not produce the antibody, it is possible to have a false negative. (Which is why they would retest)
You can have inflammation from lots of stuff, including Celiac. Did you do an endoscopy? They will look for flattened villi which would conclusively diagnose Celiac.
There isn’t one set of symptoms of CD either, some people live their whole life and never know they have it.
Leaky gut, IBS and lots of other things can have similar symptoms. Good luck!
Ok thank you all I am just so lost on all this \nCeliac was just told to me on Tuesday at the Dr appt but blood test did not confirm so here I am asked for advice thank you all. This group is so good and informative have no idea myself about this
One more question do any of you break out in little bumps like a rash sorta
I do and hard to get them to heal
So my blood test was negative but my endoscopy was positive with biopsies..so blood test isn’t always correct
Ask for the egd