1. Community
  2. Gut, bowel and stomach
  3. Coeliac Disease

NHS what now?

Posted , 3 users are following.

Cemo
Cemo

I've had problems ever since I was 2. My mother noticed my symptoms and had taken me to the gp at the age of 8 as I was only 20kg. I was terribly thin, always dark circles under my eyes (sign of malnutrition). I'd be put off food and still am. My weight has always fluctuated. I'm currently 1.79m and 63kg. I was 78kg 2 years ago when I was on a strict diet of meat, salads, fish, fruits and vegetables whilst working out. I always took multivitamins daily. So my blood test results for my vitamin levels come back fine. At first (when I were around 10) I'd feel tired after eating gluten containing foods. It then advanced to headaches and sleepiness. I remember sleeping a whole day straight. Now it got to the point my other organs are acting up. I'd vomit after noodles and now I have hypoglycemia attacks after bread. My gp told me to continue eating wheat for 6 weeks to prove I am a coeliac. I was eating half a biscuit (not enough) once every 2 days as I'd be really sick and tired. My bones have also aching ever since I was a child. Doctors always pushed me away and tried to diagnose me as a patient who has anxiety and depression. "panic attacks". When they're in fact hypoglycaemia attacks. So my blood antibodies test for coeliac came back negative, but I had high antibodies within the "normal range". According to how much wheat I ate that's a positive for me. It got to the stage I had to drop out of a top 20 uk university as the NHS has never been helping since I was a child. They booked me for an endoscopy in which I have to wait 3-4 months for. So I went overseas to Istanbul, Turkey. Paid for everything from ct scans to an endoscopy, to full on blood and urine scan. The whole time I was eating wheat and the last day of my trip (I was luckily at the hospital). I had a full on attack and was rushed to emergency, my heart rate was at 170 and doctors didn't know what it was. The head doctor arrived and asked my father what I had eaten. My father said I had him eat a whole bread. My father also had a stomach surgery to remove a part which had a hole after bile reflux from his coeliac. Problem is he never diagnosed himself and refuses. He explained everything to the doctor and I was diagnosed a coeliac at Turkey. The doctor stated there is no 100 percent accurate test for a coeliac. Now I return back to London with all my results including my endoscopy which shows an inflammation and destroyed villi. Yet the NHS refuse to accept this. They state "we must carry out the observations". What should I do? I've seen dozens of doctors and been to different gps. I'm sick and tired. I'm a severe coeliac patient with kidney problems (high calcium crystals in urine). I've literally given up. I'm in student debt, the nhs is inefficient on an extreme scale. If it's left to them I should be dead before being diagnosed. Sorry for the long question and info.

1 like, 3 replies

3 Replies

  • antpring
    antpring Cemo

    Posted

    So sorry you've suffered so much already. Maybe just go with what other doctors say and become gluten free on your own - there's only a few staple foods you can get on prescription anyway. Ring coeliac UK helpline??

    • Cemo
      Cemo antpring

      Posted

      Thank you for showing interest and reading. I've never thought of calling the hotline. I'll try that, I hope they're better than 111 or 999 ambulance. I got told once I'm on the queue for an ambulance when I eventually blacked out.
  • Actiquser
    Actiquser Cemo

    Posted

    Hi Sorry to hear your very sad tale of suffering.

    I am gluten intolerant , lactose intolerant due to short bowel syndrome. I do not get Gluten free product from NHS because the only way you get them is if they diagnose you with doing a biopsy with you having been gluten free, then a second biopsy having eated gluten for 6 weeks to find atrophy and damage of the villi in your small intestine due to gluten allergy and I am not eating gluten for 6 weeks.

    and suffering. I am surprised that they do not accept your endoscope results.

    This is despite seeing a dietician every month and her confirmimg I am gluten intolerant.

    I buy gluten free pasta and some other gluten free product but in the main do not like them. I prefer to buy other food that are gluten free due to no wheat in them and veggies.

    I have to have Ensure supplements (1500 calories a day) that keep my calories up and hydrate me as I am at risk of kidneys not working at 100% due to dehydration.

    Try to get yourself a dietician that specialises in gastroenterology problems . Mine is fantastic and has been more help than a lot of Drs have.

    The products you get on the nhs are limited and you get a months supply of bread at a time and have to freeze it. I buy glutenfree bread and rolls and freeze them and use as I need. Use a lot of rice , rice noodles, potatoes and vegtables. Its quite easy really and is not any more expensive. The gluten free products use rice or potatoe flour instead of wheat flour.

    I would do as the other responder has suggested and go gluten free on your own whats stopping you if you know you are gluten intolerant.

    You have nothing to loose and a lot to gain. Stop blaming the NHS and get on with having a good life.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.