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Gluten Free Guerrillas
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Coeliac - positive biopsy, negative bloods

Hello there. I had scopes in December, the colonoscopy was routine as I have Crohn's however the consultant also ordered an upper scope (sorry I don't know the term) as I am having lots of upper pain and a ridiculous amount belching! aswell as feeling unwell. I've been informed my stomach biopsy came back positive for coeliac and blood work was ordered. The bloods however (including the ones that test for the deficiency which can cause false negatives) have apparently come back normal. I'm so confused now and actually quite upset as I thought I had a reason for feeling so rubbish. Just to say my crohn's is inactive so the symptoms are not from that. Just wondered if anyone else has been in this position? What does it all mean? I'm worried about what is happening with my body. I do have an appointment with my consultant on the 23rd

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It is possible to have a negative blood test and still be Coeliac. The biopsy is the definitive diagnosis.

Perhaps have a read of Coeliac U.K. to understand more about it all.

coeliac.org.uk/coeliac-dise...

Hope the consultant meeting goes well.

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Totally agree with Penel.

good luck!

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Thank you for your reply. I had read it was "possible but rare" so it kind of threw me a bit you know? My crohn's diagnosis was so straightforward, biopsy positive, bloods positive so this feels a bit unsure

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I know 2 C oeliacs who have negative blood tests - not that rare ☺

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I attended a research talk on coeliac disease recently, and a lady in the audience was like you - she had CD confirmed by biopsy, but because the blood work later came back negative, she presumed the biopsy was incorrect and had continued to eat gluten. The doctor giving the talk confirmed that the biopsy is always the definitive diagnosis.

Unfortunately it means you do have coeliac disease, and so you need to adopt a gluten free diet.

They are working on a better blood test, as this one has a few too many false negatives!

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Thank you for the information 🙂 I guess I maybe put too much weight on the out come blood work!

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The Celiac lab tests are not very accurate. False negatives are common. However, by now you should have remove gluten from your diet and that will tell you without a doubt. It's amazing how much better you feel so quickly.

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I haven't as yet, my GP has said not to until I've spoken with my consultant incase the GP hasn't completed all necessary blood work. It's such a frustrating situation

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I've been off gluten for 10 days and feel better than I have in 15 years!

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Ah really? That's great, so pleased you've found some relief 😌 Really really hope that's the case for me too

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Can there be false positives in blood work as well? I had positive blood results last October and went GF. I have not seen any significant improvement in symptoms.

FYI, I'm on a wait list for the biopsy and will have to return to eating gluten 6 weeks prior to the test date. Since I could be waiting for 18 to 24 months for the biopsy I decided to go GF for now.

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I was diagnosed with Celiac over 10 years ago and I felt so much better so fast. However I was recently a blood test said I was allergic to Dairy. I avoided that as long as I could but after a couple weeks, I remove Dairy and I finally understood what people meant by bloating and cramping. When it went away. So while I don't have any doubt at all that you're Celiac because of your endoscopy, it may not be that that's all you have to deal with. So if things don't get perfect right away, don't give up hope.

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That's interesting thank you, will make sure I monitor things if I don't see an improvement

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Hi shelleybob77,

That is what happened to me which left me confused whither i had it or not for few month. Biopsy positive ,blood negative. My consultant was convinced i had celiac and ordered genetic blood test. After that came back showing i had the gene for celiac with the positive busy i was then officially diagnosed.

Hope you get answers soon as that being in limbo isnt nice.

Take care

Ang74

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It's interesting to see so many people have the same issue. I don't think you can get a false positive on a biopsy, the damage is usually obvious, and it's only coeliac disease that causes it.

After the biopsy, they do run blood tests, but it should simply be to check whether you're complying to a gluten free diet.

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I've just had more information from my GP, she tells me the test results how "an increase in lymphocytes linked to gluten sensitivity" is this what they class as a positive coeliac biopsy? My GP is pretty clueless about it in all honesty!

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What a weird way to phrase it! It sounds like your GP doesn't know what it means!

It definitely still suggests you need to go gluten free. I think a consultant will only say the same. If you're having severe gastro symptoms, I would cut back to one bread sized portion of gluten per day until you see the consultant, and take the chance to enjoy some of the GF goods you'll miss most!

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That's what's worrying me, sounds very ambiguous which makes me think there could be something different going on

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This sounds very minor compared with coeliac, but lactose / dairy intolerance can certainly cause belching and discomfort. Might be worth experimenting by cutting that out while waiting for your appointment.

I hope you get more clarity when you have the appointment.

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hi there - I'm diagnosed coeliac but have always had negative coeliac blood tests (and also not IGA deficient, so that wasn't the reason). Biopsy 2.5 years ago showed substantial villi damage and lead to a definite diganosis.

Recent biopsies to check my progress (as obviously they can't check my bloods) have shown a huge response to the GF diet, villi almost normal. So definitely coeliac :D. I do understand your worry, I remember feeling unsure myself.

By the way the "increase in lymphocytes" is something that comes along with villi damage I think, I definitely had the same wording on my diagnosis report. In fact they reported there was still some "increase in lymphocytes" on one area of the recent biopsies (I think that can continue even once the villi have started to heal, ie the last thing to resolve), but nothing they were concerned about.

Hope this helps

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Thank you for that Tilly, it's good to hear firstly that someone else had the same experience and more importantly that your stomach is healing :) you've made me feel a bit better!

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Good luck on the 23rd.

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Thank you all for your support. My consultant has said the increase lymphocytes can be nothing and with negative bloods also that means categorically I do not have coeliac. He had no answer for my increasingly severe symptoms other than IBS so I guess I'm going to have to try and just get on with things.

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Have a look at the Low Fodmaps diet to help you cope with IBS. I have found it very useful. It was developed by the Monash University in Australia. Lots of recipes on line and a phone app to help identify foods.

healthline.com/nutrition/lo...

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