confusion over tests

Has anyone got any suggestions on what I should do please. I have a diagnosis of SLE lupus and sjgrens this came to light because I had pancreatitis for a second time. on a blood test Dec 2013 it showed positive for coeliac, a biopsy in Jan 2014 was negative. Because I was having lots of problems, pains, bloating etc I followed a coeliac diet and started to feel much better, less pain, no bloating unless I made a mistake with food. I have to have regular blood tests and each time the coeliac screen comes up positive. The GP phoned today saying my bloods are positive again so they want me to have another biopsy.

My daughter was diagnosed with coeliac July 2014, she says they shouldn't need to do a biopsy as she has the diagnosis and is a first degree relative?

Here's my dilemma I've eaten 'normal' food this week and am really beginning to feel ill, I'm not sure I can cope making myself suffer for six weeks. Does it matter if I don't have an official diagnosis? could it be Lupus or sjgrens that causes the bloods to be wrong? All I know is I feel better for following a coeliac diet and don't really want to make myself ill.

5 Replies

  • Have a very in depth conversation with gps and consultants at hospital because you cant only get a coeliac diagnosis from blood it has to be biopsy

  • Hi Chris, this is a dilemma and I agree that you need to discuss this with your GP. There is a link between both lupus and sjorgrens with CD and it gets even more complicated as some people with sjorgrens have silent CD and some have non-coeliac gluten sensitivity and some just feel better avoiding gluten. So in my opinion you're obviously having a reaction to gluten regardless of why.

    However there are advantages to a formal diagnosis so before giving up on the gluten challenge and your Dr is being diligent so again talk to them first. And it might be worth discussing a genetic test especially as your daughter has a formal diagnosis. The genetic test is a private test and it only shows that you have the genes that can trigger CD (have a predisposition to CD)

    Here's a link from the archives of previous posts that may interest you:

    And good luck as you've enough going on at the moment with out a gluten challenge so you will have the sympathy of other members of GFG and let us know how you get on.

  • If you have an enlightened doctor I think they should diagnose without the biopsy. Contact them as soon as possible. You have enough to deal with lupus and coeliac and family. It is possible to have a false negative biopsy and although it was seen as gold standard in the past rhis is not always the case. In children for example they may miss out the biopsy. A relative of mine had negative biopsy but symptoms plus coeliac in both parents families so the doctor was in no doubt the biopsy was wrong and had just picked an unaffected area of the gut this was before the blood test was available.

    A positive blood test is nearly 100% reliable and if you are getting repeated positives I cant believe they need the biosy as well in addition to symptoms and first degree relative etc. This is not rocket science! You could phone coeliac uk for advice before you contact the consultant but definitely see whether you can get diagnosis without biopsy. If not try another consultant, I think you can ask to be referred elsewhere.

    In discussions like this with my sons doctors I asked them what else would give positive blood test except coeliac disease and they did not have an answer. I believe it is just that the biopsy is the established method of diagnosis and was established before the blood test was available.

  • Thank you for all your comments, it is reassuring to know that others understand. I have discussed it with the GP and we have agreed to wait a few weeks as I have an appointment with the Rheumatologist who instigated sending me to the Gastroenterologist in the first instance, I'll see what he thinks AND I'm stopping gluten again :) It will be interesting to see if they go with just blood results or not.

  • Best of luck to you Chris. I feel what your going through. My situation is probably worse, though fortunately I don't have to do biopsies or surgeries (I hate all of that stuff). I never used to but at some point the amount of time spent in hospitals and the amount of cock ups they make in this country, I just got fed up and frankly would only go into hospital on a life-threatening emergency basis. but then again I'm stubborn and don't care if I live or die at this point haha! :|

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