Sick and fed up

[elliespal]

Hi everyone,

 

I received a positive blood test for coeliac a month ago after persistently experiencing stomach pains for quite some time.

 

Yesterday I got a phone call from my local gastro department to let me know that I would receive my endoscopy appointment letter within the next 4-6 weeks (meaning the actual appointment date could be 2 months +).

 

I’m from the UK so am reliant on NHS at the moment, but was wondering if it’s normal to incur such a long wait for an endoscopy? I got a bit emotional when I received the phone call because the thought of feeling like this for another 2 months seems horrible (FYI I have been and will be eating gluten until the endoscopy).

 

I spoke to my GP on the phone last night and told him that my appointment might be some time yet I feel run down, my skin is dry and flaky, my hair feels thin, I have patches of eczema on my face which I’ve never had before, I’m constantly tired, constantly cold and just generally feel awful! My GP said that on my blood test in February, my ferritin level was on the low side but everything else was fine so there was nothing that they could do for me right now. He said that taking supplements would likely be counterproductive right now anyway as my body probably isn’t able to absorb nutrients (hence why I feel so ill).

 

I do understand the difficulty of this ‘limbo’ stage before the endoscopy but am I really just expected to feel worse and worse? The GP wasn’t concerned about rechecking my blood levels from now until the endoscopy so I just feel very alone and isolated.

 

My dad is also very concerned atm because 5 years ago I was hospitalised with severe anorexia (fully recovered now!) which I have pinpointed as the beginning of my stomach symptoms (no childhood illness or any signs of coeliac before getting ill). I moved from Scotland to England last year so I’m unsure if my English GP have my Scottish medical records showing my ED history. When I registered with my English GP I told a nurse about my history which I assumed would be on my file, however, my dad (having spoken to a family friend who worked previously as an ED nurse) believes that my previous illness should mean that my coeliac diagnosis should be treated more seriously. I’m not sure whether he is just being a wary father or if there is actually any evidence to this – anyone with similar experience would be a great help!

 

If anyone has any advice on getting through these next couple of months I’d be truly grateful! I didn’t know that this disease would cause me to feel so helpless so soon.

[ravenwoodglass]

Sorry you are suffering and having to endure such a long wait.  You could try and see if you can get on your GI doctors cancellation list if you can get in on short notice. that way if someone cancels sooner they might be able to get you in. Another alternative is to talk to your GP and see if they will give you a formal diagnosis if you go gluten free now and your blood tests go into the negative range or drop significantly and your symptoms are relieved.  If not you don't have to eat a lot of gluten to keep the damage going. A slice or two of bread or some other gluten food once a day should be enough. I hope you get some relief soon.