I'm very confused - Coeliac Disease

[Pokeroot]

I had a blood test for coeliac disease which came back positive, so then had a biopsy. The doctor doing the biopsy said he could see atrophy in my duodenum but couldn't say whether it was coeliac disease or not.

Anyway its been 5 weeks since the biopsy and I hadn't heard anything so I rang up my GP to see if they had heard anything. The receptionist said all the test results are marked to say that they are all ok

The consultants secretary can't tell me anything other than to wait for a letter. The last letter I got was typed the day after the tests it was telling me about so I don't have much hope that it will arrive any time soon.

Can anyone make sense of this please? I feel like my life is on hold.

[denialandpanic]

dp had this he had to have another test a gastroscopy.I think they go further down.basically he had no villi for them to sample I'm not convinced the consultant was ever totally convinced it's coeliac but gluten was reading his stomach do that was their begrudging conclusion.

[Pokeroot]

Thanks for the reply denial, I hope your dp is better now.

The consultant only did the test to rule coeliac disease out, he didn't think it fitted my symptoms but wanted to make sure. When I was first told about the positive blood test I really hoped it wasn't that but now I want to have coeliacs as that means all I hopefully have to do is change my diet to feel better!

I just can't understand how the GP receptionist can say all tests including the biopsy are fine when the doctor doing the biopsy could see damage

[denialandpanic]

dp is much happier and much healthier gluten free.now even a tiny amount makes him very ill. he also has low bone density probably from years of not absorbing nutrients.he would never have had the scan without the diagnosis. our kids have been tested,dd was symptomatic and is now treated as coeliac and thriving. I feel it's really worth pushing for definitive answers.

[pansyflimflam]

Generally speaking you do not get an incorrect positive blood test. I cannot see why it is not good enough without the biopsy, they do have a failure rate for these but not for blood tests as far as I know. My 2 dds were diagnosed with blood tests alone, they were high positives - good enough for me without putting them through the trauma of a procedure.

[Pokeroot]

Denial I am glad your dp is better now, I have sort of been gluten free since I had the biopsy 5 weeks ago and I feel so much better.

Pansy I'm glad your dds didn't have to have the biopsy, it wasn't pleasant. I don't know what my blood test results were other than positive, and I don't see how the biopsy could come back negative when the doctor said he could see atrophy Unless the atrophy is caused by something else but then the receptionist wouldn't have said all results were ok. I'm going to see if I can speak to my GP on Monday, maybe the receptionist got the results wrong.