Gluten Free Guerrillas
8,482 members3,503 posts

Difficult diagnosis

Hi ,it's been a while since I asked a question on this site and for the last year it was difficult to confirm my diagnosis. Last year I had an endoscopy due to constant nausea,stomach ache and feeling generally unwell. I had had these symptoms for a few years. Biopsy showed partial villus atrophy,all blood test negative. I didn't respond to the gluten free diet for 12 weeks when the Dr decided to do the genetic tests which states that I am negative to HLA DQ 2 and 8/ 10 (can't remember which). Had another endoscopy even though I was feeling really well by this time which showed no atrophy . Dr said start to slowly introduce gluten , I was fine for 3 months and then started with the old symptoms. Had yet another endoscopy 2 weeks ago which proves that I have partial villus atrophy again,so back to GF. Do any of the members also have these confusing results ? I am glad to be going back to GF as I know in a few months I will feel much better. Thank you to you all for helping so much last year, I doesn't feel such a big thing this time round . X

4 Replies

My experience is equally confusing and quite opposite. Having been referred by my GP to a haematologist due to all my 'perplexing' blood and other symptoms which were 'an enigma', I was tested for Coeliac among other things and found positive for 2 separate Coeliac antibodies. I was signed off by the haematologist and sent back to my GP 'for management of this'. GP said the blood test was the definitive diagnosis; I didn't need a biopsy and I was to start a GF diet straight away (which I did).

I asked to be referred to a dietician to support and monitor me on this. The dietician said that the definitive test was a biopsy and if I wanted, she would request this to my GP, who would have to refer me to the gastro-enterologist. But, I would have to go back on to gluten for at least a month before the biopsy. What she also said, is that they are changing the focus of the diagnosis from biopsy to include anaemia (tick for me) and osteopenia (also tick for me).

At the time (earlier this week), I decided not have the biopsy but now I wonder whether I did the right thing.


Thanks for replying Judy, I wish it was more straight forward but I think it's just one of those things that's not! If you are worried about the endoscopy though don't be. I had mine under sedation and don't remember a thing. A positive really,no work,no housework,no cooking and no taxiing the kids around for the day!


For me personally, the best course of action has always been to listen to my body when the tests seem to be confusing. There are many medical conditions that benefit from removing gluten and wheat from the diet. It works for me. I don't eat gluten and wheat and I haven't for almost 7 years. I don't find it difficult and never plan to go back. You are the captain of your medical team. Listen carefully to all the expert advice that's given to you by your medical care givers, then you make an informed choice. It's your body... it's your life.


Liana that's very true. For me now I just don't want to carry on with the symptoms so this time I welcome going GF . I am sure there are foods I will miss but feeling well is the priority.


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