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Coeliac Disease

7 replies

Pennypebbles · 15/12/2015 19:11

I'm confused and wondered if anyone had any knowledge or advice.

I've been having issues with anaemia not being corrected by iron supplements so had a blood test that was negative for coeliac disease. I was referred to gastroenterology and sent for a gastroscopy. I went to the GP for the results today and apparently I have a hernia (but he said that is unimportant) and also the biopsy showed evidence of coeliac disease.

My GP says he doesn't know what this means and will write to gastroenterology to ask them, he's never seen this before, but a quick google seems to suggest that you can have a negative blood test and yet have coeliac disease. I asked about cutting out gluten but he said I can't do that until its proven one way or the other. I came out of the appointment really confused and with no advice on what to do other than to wait for another hospital appointment, which could be months.

Anyone got any thoughts? Thanks.

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CMOTDibbler · 15/12/2015 20:21

If the biopsy showed coeliac disease, then you have it and should go GF - its the gold standard for diagnosis so theres nothing more to do.

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Pennypebbles · 15/12/2015 20:39

Thanks. Should I go gluten free straight away do you think, or go back and talk to the GP/wait for gastro appointment? I feel quite let down by the GP, he was just shrugging his shoulders although he's had the results for a week so could have checked anything he wasn't sure of before I saw him.

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Hassled · 15/12/2015 20:44

I read that there are quite a high number of false negatives in the coeliac blood test, which is why they then go for gastroscopy to be sure. The evidence they'll have seen will be what the villi on the lining of the intestine look like - they flatten with Coeliac. So it sounds to me (non medic) that it has been proven - I don't really understand what the GP means. Is it worth making an appointment with a different GP to ask for some clarification?

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Lizawithaz · 15/12/2015 20:51

My mother has just been diagnosed as coeliac. My understanding is that the only reason to continue with gluten is in order to have correct results with the gut biopsy - but you've already had that and it says you have coeliac disease. As other posters have said, it is the gut biopsy that makes the final confirmation of coeliac disease.

So your GP should be getting you an appointment with a dietician and putting you on an order for gluten free food on prescription (bread, pizza bases, flour etc). I would suggest you ring the charity Coeliac UK for further advice as well.

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PoshPenny · 15/12/2015 21:06

Very good suggestion to contact coeliac UK. It sounds like you have coeliac disease, but your doctor doesn't have much knowledge of the condition. My understanding is that the biopsy is the definitive way of diagnosing it. I had a negative blood test too, apparently the false negative is quite common, according to the gastroenterologist I saw. That was following a rock bottom of normal range ferritin result, they decided to run a coeliac test on me. I may be one myself, I went GF 2 years ago after the negative blood test but was too scared to have the endoscopy until a month ago. maybe my GP has the results although my follow up appt isn't til January with the gastro people. I must phone tomorrow to see. The GF diet made a huge difference, I started to feel better within days.

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Pennypebbles · 15/12/2015 21:09

Thanks, I will give them a ring tomorrow. I came out so confused and now I'm trying to get my head around something with no medical support.

It's a one-man-band GP surgery unfortunately so no chance to see someone else.

I'm just frustrated as I feel like I've been left hanging, I know GPs don't know about everything but he could have found out and I just feel like he didn't see it as important, but it is a major thing for me if it is Coeliac disease - I'll have to make massive changes. I suppose it isn't the most serious thing he'll see that day but he just really didn't seem bothered at all. A quick google told me it is possible to have negative blood tests and still have it, but he told me he didn't know if that was even possible.

Time for a surgery change I think.

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Pennypebbles · 18/12/2015 22:48

Got a letter through the post this morning to say that my GP is retiring on the 31st December - might explain his complete lack of interest in my guts!

So will be changing surgery mid-diagnosis it seems. Nevermind, I've only had a ferritin level so low it is officially measured as undetectable since March, no rush or anything. It's leaving me on my knees with tiredness and constantly going to the loo is really impractical when you're a teacher.