how many people have had celiac antib... - Gluten Free Guerr...

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how many people have had celiac antibody blood tests come back negative? but they still think they've got coeliac disease?

glutenhater profile image
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glutenhater
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11 Replies

Hi glutenhater, my results came back negative for both the blood test and the biopsy but im pretty sure i have it. Although i am having so many issues right now its hard for me to say what i do have and what i think i might have!!

Paula

anniestourport profile image
anniestourport

Hi

I didnt have a blood test, sent straight for an endoscopy where the biopsy results were inconclusive. Have been reading a lot now about gluten sensitivity and have every symptom but one so feeling a lot better about it. I guess bottom line is if it makes you poorly avoid it!!! Seems to be working well for me now

sassyl profile image
sassyl

My son came back negative but I swear he's coeliac in waiting, like me at his age.

I was diagnosed from a biopsy, not bloods. I have an IgA deficiency which made blood diagnosis really hard (it's heriditary too). Ask them to check your IgA levels too and do a genetic test or a biopsy.

freelancer profile image
freelancer

I tested negative on a private blood test after going gluten-free suddenly "cured" me of all the symptoms I'd assumed were from another autoimmune disease. But by that stage I'd been off gluten for eight months or so and only went back on it for 10 days to do the test, which I later learned may not have been enough.

I don't eat gluten because I feel like a different person without it, but I'd really like to have an official medical reason!

Angelbelle profile image
Angelbelle

My blood test came back negative but I have proved that foods with gluten give me "problems". I have put myself on a gluten free diet which makes me feel better and everyone keeps commenting on how well I look.

Lexy profile image
Lexy

My blood test came back negative but my doctor told me to stay gluten free (I guess I'm lucky) because it was so obviously making me feel better. However the investigations (they suspect Dermatitis Herpetiformis) is ongoing and I'm awaiting to hear skin biopsy results in a few weeks.

glutenhater profile image
glutenhater

I KNOW ITS FRUSTRATING, mines came back normal biopsy and blood test but i dont care i am still going ahead and continuing with the gf diet.

trekpole profile image
trekpole

I have a had a negative blood test and biopsy but probably false as i am gluten free. Do not eat gluten or lactose and feel a lot better. That is proof enough for me.

jackieO profile image
jackieO

I had a slightly abnormal biopsy in 1991 that was not actioned by the medics who did it. They did chase up the folate deficiency anaemia I had and as the gut symptoms I had presented with settled down it was another 10 years before I looked for help again.

The general malaise, depression, low level anaemia all persisted. By now I was out of the Army and my previous medical history was therefore sketchy to the GPs where I live. I went on a diet that excluded wheat (therefore MOST gluten) to try and help my arthritis. I felt loads better but the most dramatic effect ewas the massive gut symptoms when I did eat a sandwich at my brothers wedding 10 weeks later!

Blood tests were borderline and so was a biopsy but I had only had 8 days notice of the test so had not been eating gluten for long. However the diarrhoea and pain were so dramatic they said I almost certainly had CD. I suppose I met the right combination of doctors too.

Eccentrica profile image
Eccentrica

My blood tests have been negative over the past year but I have increased intra epithelial lymphocyte activity upon biopsy.

I asked the Gastro if anything other than Coeliac caused this and he said "No".

So, apparently I am a "latent" and he didn't want to put me on a gluten free diet because of the potential "hardships".

I had a chat with my GP and we both agreed to try gluten free and if I felt better then to stay that way.

I never had significant bowel problems as per the "usual" symptoms, but since being gluten free I definately have a flatter tummy.

E,x

s-unrise profile image
s-unrise

My blood test has come back normal, started gluten free day after blood test anyway. On my third day and still woke with stomach cramps and achy joints, bm aren't as loose. Hopefully this is just my body detoxing and I will start feeling better soon. Not got heartburn as much!! I really thought my test would be positive but decided to try and go gluten free anyway, bit emotional.

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