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Has anyone given up on getting diagnosed?

Posted , 4 users are following.

lillie1989
lillie1989

Two years ago I stopped eating gluten after having worsening symptoms for 10 years. I had constant D and pain, severe bloating (so I would struggle to breathe), a rash that made my skin red and flaky, gastritis, irritability and a foggy head amongst other things. I was told i has IBS, i was bulimic and 'sometomes young women just throw up a lot' . i ended up in hospital twice as my stomach had gone into spasm.I had a low paid basic job and was struggling to hold on to that.

When I had been off gluten for a month I realised this was what was causing my problems (even ones that I had come to believe we're 'just me' like irritability) and I asked for a blood test for coeliac. I wasn't aware that it would come back negative if I was off wheat.

I was recently diagnosed with interstitial cystitis and have been sent to a gastro specialist for gastritis (which went away but came back, probably as I was given naproxen for my bladder). I feel that if I accidentally gluten myself it makes my bladder much worse but was told there's no link. I told the gastro guy I'm off wheat and he proceeded to tell me I don't have coeliac and to say 'wheat sensitivity' in air quotes for the rest of the conversation.

As far as I've read you have to eat wheat again to get diagnosed and I just couldn't do that for a prolonged period. Has anyone else had a similar experience where they took it into your own hands? Do you still get dismissed by doctors? Do you think it could link to other conditions you have? Do you struggle with feeling depressed that the medical profession think it's all in your head?

I don't know whether I have coeliac but I know I can't eat gluten. I just feel very alone right now and wondered if others could share similar stories and what you did/ are doing. Thanks.

1 like, 3 replies

3 Replies

  • marlene21102
    marlene21102 lillie1989

    Posted

    You need to keep eating gluten right up to when getting tested , I had private bloods done last year ,yes it was confirmed I had gluten etc allergies , if you want peace of mind go private . Im not Coeliac , but I know someone in my family who is ,and I didn't have a couple of markers she has . I had my thyroid checked when I went private route , killed 2 birds at same time ,but well worth the cost to getting answers . I look at everything I eat now . I to have IBS since my issues began . No it's not all in your head ,go with your gut feeling . 
  • lynda01728
    lynda01728 lillie1989

    Posted

    Dear Lillie,

    Just had to write,

    Firstly you are not going mad and it is not all in your head.....it's in your gut!

    Like youI had been ill for years and tested for just about everything. I was then told it was 'a virus'.....'the menopause',,,,,,and finally 'depression'. I then came out in a rash that the doctor said looked like dermatitis herpetiformis and tested me for Coeliac. Hey, surprise,surprise, it came back negative because like you I was barely eating any gluten. She was adamant that it wasn't Coeliac though and put me on antidepressants.

    I got sicker and sicker and eventually under pressure she referred me to a gastroenterlogist and as luck would have it there wasn't one at my nearest hospital and I ended up at Southampton General. The Consultant there was puzzled by the confusion and said I had text book symptoms of Coeliac. He did genetic testing which came back positive and after 1 week he diagnosed me as Coeliac. The GP still seems to have trouble accepting this diagnosis because I haven't been biopsied but the very senior Consultant said I'd ben through enough and that it wasn't necessary.

    That was 2 years ago. You don't recover overnight(although a week off gluten completely and I did feel very much better) I have lots of other food sensitivities now and cannot tollerate dairy or oats. I have been on a FODMAP diet for 12 weeks and am gradually reintroducing to see what I'm ok with. However, I have steadily improved since giving up all gluten. I am extremely careful but it is worth it. I weaned myself off the antidepressants which my GP would probably have left me on forever more.....

    I am angry and bitter that so many opportunities to help me were missed and that I suffered so much for so long, It may sound dramatic but I think I wouldn't have lasted much longer if I;d continued poisoning myself.

    Please do not give up. Get a different GP. Insist you see a gastroenterologist. Arm yourself with as much information as you can, Ask for genetic testing (apparently expensive so they don't like to do it)

  • laurie99463
    laurie99463 lillie1989

    Posted

    Hi Lillie, It is not entirely accurate that you have to eat gluten to determine if you have celiac.  I believe that you need to have an endoscopy.  This will determine whether or not your small intestines are inflamed and the villi are atrophied.  Our symptoms are so varied that sometimes we think we are nuts!  Your skin, shortness of breath, foggy mind, digestive challenges certainly scream celiac.  BTW, not every doctor believes in our disease.  Not every doctor graduated with an "A" either!  I know for a fact that celiacs have been misdiagnosed because of a doctor's bias only to discover later that indeed, they had celiac all the time.  You see, you can't prescribe medicine for celiac ... (a hint of sarcasm).  The other digestive challenges you can.  

     

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