Have Been gluten-free Free For 2 Weeks But Going For Gastroscopy

[MattUK]

Hey you all.

I posted a few posts before but this is my story and where I am.

Have been ill since I was 15 and told that my shortness of breath and aneamia was ashthma. Ive been back and forth to the docs since with Bloated stomach and absolutely chronic fatigue since then. I am 32 now. Ive also had knee rash that wouldnt go away, chronic hayever, constant puffy wet red eyes, headaches, upset stomach and recent mental foggyness, and constipation and diarrohea and now my teeth enamel is thin and flaking. My GP (doctor) finally snapped at me three weeks ago that it must be in my head because 'weve tested you for everything except Celiac disease'. So, they blood tested for celiac disease but i hadnt been eating wheat for weeks. I went back to get my negative results from a different GP (we have a pool of five) and he said 'its negative, you dont have celiac'. I explained my history and what the last doc said about Celiac and he snorted 'She was really scraping the bottle of the barrel' When I assured him I was sure I have celiac disease and that it can test false negative he said 'Have you ever thought about having counselling'. I wish id said 'Have you ever thought about being trained'. Its not an exaggeration to say I was incandescant with rage. (Thats my new word, im using it alot these days )

Anyway, I saw my better GP today and I am privately going for a Gastroscopy next friday and will get the results three days later. However, I have been eating gluten-free for the last two weeks and despite a couple of slip ups I definitely feel somewhat better. Ive been less tired and the foggy ness has started to go. Before that I was eating a lot of bread and pasta solidly for a week. Before those weeks I had cut most bread and pasta out, still had some, but had still been drinking beer for a few weeks.

Advice id like from you:Recently, I was told that if i hadnt eaten wheat for 6 weeks every day then I would get a negative blood test and negative biopsy. But today, the Coeliac helpline in the UK told me that if i had eaten gluten in he last few months at all and have been having symptoms then I will probably get a positive result. Is this true? I dont want to go through this procedure if it will be a false negative. I would really appreciate your advice. Its Friday night today, im off out for a few beers and intend to eat wheat for the next three or four days to see if it gives me a boost. Whats my best course of action do you think? I really cant face eating Gluten for the next six weeks when im sacred for my health and it makes me feel TERRIBLE! (By the way, the reason i want to get tested is because you cant get bone scans etc etc unless you are tested positive. I cant face not being taken seriously for the rest of my life).

Thanks so much people, its great to know there are others to talk about this stuff to.

Matt

[nettiebeads]

Sorry, I'm no help when it comes to medical diagnostic procedures. I was dx'd via diet challenge alone. But I'm just posting to say I know it's not in your head. It definitely sounds like celiac to me. I'm fairly confident that you still have damage in your small intestine since you haven't been completely gluten-free for a long enough time to get the healing really started. I wish you the best.

Annette

[Guest Robbin]

Yikes! Sounds like doctors there aren't much better than here. Gee, I think it's a world-wide epidemic of "celiac phobia" amongst the doctors. I think you are right. Many people here are diagnosed by diet improvment alone. I wish you the best and hope you get a doctor that takes you seriously. This forum is a wonderful way to get the support you need. It has probably saved my life. Take care