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HI all:),

Does anyone know if small intestinal biopsies are always conclusive for celiac? If your tests come back normal, does that mean you cant have celiac? I was just wondering because isnt it possible for the biopsy to come back normal, but still have damage in other places? I mean its just a small section. what if the section they took the biopsy on was normal(say in the duodenum) but there are othere spots(say in the jejunum: or however you spell it). Any input is appreciated!!

Tyler

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Biopsies are not 100% accurate. If you get a positive result, that's usually pretty accurate, but if it comes out negative, you should not rule out celiac disease. Like you said, the damage can be in another area. So even if the samples they take show no damage, there could be a different section where the villi are completely gone. Also, if you have been eating little or no gluten, you might see little or no intestinal damage, even though you have celiac. That's why if someone who's been on the diet long enough (5-12 months for most) and they perform another biopsy, it will test negative for celiac disease, even if the person actually has the disease. Simply, you're right--it's not always accurate. If you have positive bloodwork or Enterolab results, I would find that conclusive enough in my mind and would not worry about negative biopsy results.

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Yes a biopsy can miss the diagnosis altogether. I know a lot of people who have had positive blood results but negative biopsies because of lack of damage or looking in the wrong areas. I agree with celiac3270, if you have blood test and Enterolab results that are positive then I would not worry if the biopsy was negative.

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I was fortunate: the doc that did my endoscopy was looking specifically for damage. He said he saw patches that were red and inflamed, so he took the biopsy samples from those patches. Otherwise, the diagnosis would have been missed, because not all of my small intestine was damaged at the time. A doctor that is not so careful might have missed it, and I would still be consuming gluten and not getting better.

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I had a doctor who didn't want to find any damage. She only took 3 samples and did not go very far into my intestines. She did not look for damaged spots, and I have a feeling that she would have taken the samples from a normal looking area, just to confirm her diagnosis of IBS...I hate feeling like this about her, but she absolutely refuses to accept that I feel better off gluten, and she won't even believe that I have the gene...

BTW, my biopsy was negative, and we opted out of biopsies for the kids. Their pediatric GI doesn't like to do them unless it is absolutely necessary. I was okay with them not having the biopsy.

God bless,

Mariann

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Guest BellyTimber

Pardon my commenting on this:

a lot of you people are very cool about not having biopsies or not thinking them important.

I think that is massively healthy.

Over here in the UK the snag however is that doctors won't send you for one in good time.

There is a rumour going around the UK that if one takes gluten to make a biopsy work, the danger to health is extreme.

Is this correct?

Everything in the UK hinges on the doctor who is a state servant so I don't see any way of being able to get a meaningful certificate to show my employer to negotiate a reasonable attendance target for on & off ailments.

Parents who change their children's diet when young, seem to get kids that are healthier than a person who has ate wrong for 50 years, whatever other consequences ...(?)

Michael

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Hi, 'Gapspan',

I, too, am from UK - just received +ve blood tests for celiac disease from Haematologist following VERY long term (almost 30 years) iron deficiency anaemia. Been referred to GE clinic (could take up to 17 weeks!) and dietician. Haematologist mentioned I 'might need a biopsy', but wasn't sure if I should go gluten free beforehand or not!

Because I'm really desparate to get a +ve biopsy, I've actually 'upped' my gluten intake! Probably a BAD idea, because now I have 'gastro' symptoms too. Mind, that's probably 'proof' in itself that I have celiac disease - but as you said in your post, may be it's actually dangerous??

I want a +ve biopsy because otherwise I still won't know why I've been anaemic for so long and why I have all the accompanying 'symptoms' that go along with anaemia. And at last I will be able to start getting myself better. (Also can't get gluten-free food on prescription without +ve biopsy - and I really need to be able to do that! And I want my drs to ckeck my children, and I'll have more 'ammunition' to convince them with if I get +ve result.)

I think my best plan will be to go 'low' gluten until I know exactly when biopsy date will be and then pile the gluten on for a few weeks before. Knowing the NHS it will be several weeks/months after I see the GE before the biopsy takes place. Mind, as much as I hate the long waits that happen sometimes, I do LOVE the NHS - it's (mostly) free and when you need care IMMEDIATELY you usually get it - at least my husband (re acute pancreatitis) and my son (re kidney problems) did.

Sorry - I'm 'waffling' as usual! I should be studying for my degree now, not writing an essay on the benefits or otherwise of the NHS!

All the best

Ruth

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I personally do not think you need to have the biopsy done if you do not need it.

I was diagnosed with blood and improved 100% on the diet. The diagnosis made sense to me right away and I didn't think to go for further testing on it.

However, my brother had a biopsy done even though blood came back positive along with the fmaily line but he wanted to be more confirmed.

In instances like his I don't see any need to have the procedure but to have a double check.

I don't think I could ever go back on gluten just to see what a biopsy says.

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