Positive result for blood test, normal for endoscopy?

[Maqh]

Can anyone shed any light on receiving a positive blood test and a normal endoscopy result. This is for my daughter, I have been diagnosed CD via biopsy, so it is in the family.

[FionaGFG Administrator]

Hi Maqh - this is always a tricky situation.

Sometimes coeliacs test positive for the blood test which is around 99% accurate. Yet when they have a endoscopy and biopsy the doctor declares there's no sign of coeliac disease. This could be due to a 'false' positive blood test. Fairly unlikely - you could ask to have this repeated. Or because the 'gold standard' test for coeliac disease is classified as obvious signs of completely flattened villi via the biopsies. If the villi aren't flattened then Coeliac disease is not diagnosed. In America, New Zealand and Italy many coeliac doctors are now looking at what comes before coeliac disease i.e. what stages are there before the villi are totally flattened due to the immune system response.

"Imagine gluten ingestion on a spectrum, says Dr. Fasano. ‘At one end, you have people with celiac disease, who cannot tolerate one crumb of gluten in their diet. At the other end, you have the lucky people who can eat pizza, beer, pasta and coolies – and have no ill effects whatsoever. In the middle, there is this murky area of gluten reactions, including gluten sensitivity. This is where we are looking for answers about how to best diagnose and treat this recently identified group of gluten-sensitive individuals, “ says Dr. Fasano, University of Maryland school of medicine.

So it could be that your daughter is somewhere in this grey between a reaction and full blown coeliac disease. Or it could be that they didn't take biopsies from the right area of the duodenum. I've read on many Facebook pages of patients have symptoms for 10 yrs or more and repeated biopsies in which only after their 3rd or so they were confirmed as coeliacs. Who knows if this was due to not taking them in right area in the first place or because the patients didn't show flattened villi in the early days? The body is a complex machine and we still have a lot to learn especially regarding auto-immune issues!

I'd suggest you talk this all through with your GP or Gastro doctor. It maybe that they'll be happy to review and re-test your daughter in a year or two. Or it maybe they'll now explore different causes for her symptoms. Sadly many auto-immune diseases e.g. Thyroid, Pernicious Anaemia and others can cause similar symptoms which makes it tricky for a doctor to diagnose what the real problem is. Personally I wouldn't recommend placing your daughter on a gluten free diet until you know what the real cause of her problems are. It can make it doubly difficult for any future re-tests if you speed ahead and place her on a gf diet to prevent her problems even with your family history.

Do let us know what advice the doctors have given you and feel free to tell us a bit more about her symptoms, age etc and others maybe able to advise on how they've managed a similar situation.

Good Luck.

[Maqh]

Hi Fiona, I should have said my grown up daughter, we don't even live in the same area let alone the same house. She is 26 and probably doesn't eat a lot of gluten in her normal diet, but has a terrible reaction to pasta specifically. when she phoned for her blood results her doctor said 'you have a touch of coeliacs' !!So she doesn't seem to know much about cd and daughter had to tell her where to look for information and that she should have an endo. She hasn't been given any further advice since the endoscopy and is unsure as to what to do re her diet. Understandably, she is reluctant to push for further diagnosis as it will probably lead to more endo's. She is however going back to the docs as she is still getting bad stomachs etc.

[manga666]

your daughter needs to insist on seeing a dietician who will help her, if they are any good with what foods she can and can't eat. If she lives in the UK she can get certain food on prescription like bread, pasta and flour. A dietician will be able to help her adapt to her "new and exciting diet"- that was my dieticians choice of works 15 years ago. hope this helps xx

[FionaGFG Administrator]

Hi Maqh - despite the offputting thought of further prodding and poking for diagnosis I'd recommend you urge your daughter to seek advice from her GP. After all it could be something else that is causing the stomach pains. Worth her keeping a food diary on her mobile and running thru any patterns she spots with her GP so their is more evidence. Also worth her ringing the practice and asking to see a Dr who deals with stomach problems. As I said before not all people show up with Coeliac positive biopsies until years after having problems. Keep us posted.

[m0ezp]

Might she have been avoiding normal bread, pasta etc between the blood test and the endoscopy?